Living With Dementia: A Meta-synthesis of Qualitative Research on the Lived Experience

PubMed Central

Górska, Sylwia; Forsyth, Kirsty; Maciver, Donald

2018-01-01

Abstract Purpose of the Study To identify and examine the published qualitative research evidence relative to the experience of living with dementia. Design and Methods Metasynthesis was used as the methodological framework to guide data collection and analysis. Results Three themes were identified. The first theme considered the main condition-related changes experienced by people with dementia (PWD) and showed how these are interlinked and impact upon various areas of people’s lives. The second theme indicated that amidst these changes, PWD strive to maintain continuity in their lives by employing various resources and coping strategies. The third theme underlined the role of contextual factors. The reviewed evidence indicates that, the emerging experience of PWD and their potential to adjust to the continuous changes is influenced by access to and quality of both personal and contextual resources which remain in a constant, transactional relationship to each other. Implications The findings were interpreted and discussed in the context of relevant theoretical frameworks and research evidence. It was considered that current evidence and findings presented in this review can be further explored and expanded upon in a more systematic way through research conducted within the theoretical framework of dynamic systems theory. Further research would be also beneficial to explore the subjective experience of dementia from a participatory perspective. Exploring the application of these theoretical standpoints would contribute to the current state of knowledge and offer both PWD and carers fresh perspective on the nature of change and potential for adaptability in dementia. PMID:28069886

Better self-management and meaningful activities thanks to tablets? Development of a person-centered program to support people with mild dementia and their carers through use of hand-held touch screen devices.

PubMed

Kerkhof, Yvonne J F; Graff, Maud J L; Bergsma, Ad; de Vocht, Hilde H M; Dröes, Rose-Marie

2016-11-01

To offer good support to people with dementia and their carers in an aging and Internet society the deployment of hand-held touch screen devices, better known as tablets, and its applications (apps) can be viable and desirable. However, at the moment it is not clear which apps are usable for supporting people with dementia in daily life. Also, little is known about how people with dementia can be coached to learn to use a tablet and its apps. A person-centered program, with tools and training, will be developed that aims to support people with mild dementia and their (in)formal carers in how to use the tablet for self-management and meaningful activities. The program will be developed in accordance with the Medical Research Council's (MRC) framework for developing and evaluating complex interventions and the study will cover the following phases: a preclinical or theoretical (0) phase; a modeling phase (I) and the exploratory trial phase (II). The users (people with dementia and their carers) will be involved intensively during all these phases, by means of individual interviews, workshops, focus groups, and case studies. The iterative process inherent to this framework makes it possible to develop a user-oriented intervention, in this case a person-centered program, for the use of tablets in dementia care. Preparatory work will be done to perform a methodologically sound randomized controlled trial (RCT) in the near future, which aims to investigate the contribution of this person-centered program for tablet use to the quality of life of people with dementia and their carers.

ICF-Based Analysis of Communication Disorders in Dementia of Alzheimer's Type

PubMed Central

Badarunisa, Mohamad Basheer; Sebastian, Daly; Rangasayee, Raghunath Rao; Kala, Baby

2015-01-01

Purpose Dementia of Alzheimer's type (DAT) is a major cognitive communication disorder. The present study attempted to analyse communication disorders in DAT in the International Classification of Functions (ICF) framework. The study investigated the impact of the severity of communication disorders in persons with DAT on activity participation and environment components of the ICF. Method Thirty bilingual individuals with DAT in the age range of 65-88 years were classified into three groups of mild, moderate and severe degree of dementia. Forty-three items of the American Speech-Language-Hearing Association Functional Assessment of Communication Skills for Adults (ASHA FACS) were linked to the ICF framework. A few additional items were also added for a complete profiling of DAT. A total of 50 (ASHA FACS + ICF) items were rated and administered for the purpose of the study. Results The study revealed a disproportionate impact of the severity of DAT on activity participation and environment components of the ICF. Conclusion The present study investigated the utility of the ICF framework for profiling the functionality of persons with DAT. This profiling highlighted the need for ensuring effective communication and quality of life in the DAT population. PMID:26955380

Dementia skills for all: a core competency framework for the workforce in the United Kingdom.

PubMed

Tsaroucha, Anna; Benbow, Susan Mary; Kingston, Paul; Le Mesurier, Nick

2013-01-01

One of the biggest challenges facing health and social care in the United Kingdom is the projected increase in the number of older people who require dementia care. The National Dementia Strategy (Department of Health, 2009) emphasizes the critical need for a skilled workforce in all aspects of dementia care. In the West Midlands, the Strategic Health Authority commissioned a project to develop a set of generic core competencies that would guide a competency based curriculum to meet the demands for improved dementia training and education. A systematic literature search was conducted to identify relevant frameworks to assist with this work. The core competency framework produced and the methods used for the development of the framework are presented and discussed.

'This is my story, how I remember it': In-depth analysis of Dignity Therapy documents from a study of Dignity Therapy for people with early stage dementia.

PubMed

Johnston, Bridget; Lawton, Sally; Pringle, Jan

2017-07-01

Dementia is a progressive condition that impacts on individuals, families and care professionals. Maintaining quality of life through engagement with the person with dementia is an important part of their care. Dignity Therapy is an interactive, psychotherapeutic intervention that uses a trained dignity therapist to guide the person with dementia through an interview that then creates a written legacy called a generativity document. This can provide knowledge to inform care, as the condition progresses. Generativity documents were analysed using framework analysis. Main themes from the analysis were origin of values, essence and affirmation of self, forgiveness and resolution and existentialism/ meaning of life. These themes provide evidence of the type, scope and contribution that information generated from Dignity Therapy can make to the care and support of people with dementia. They provide information about the values, self-identity and the people and events that have been important to them and influenced their lives.

Curing and Caring: The Work of Primary Care Physicians With Dementia Patients

PubMed Central

CarolinaApesoa-Varano, Ester; Barker, Judith C.; Hinton, Ladson

2013-01-01

The symbolic framework guiding primary care physicians’ (PCPs) practice is crucial in shaping the quality of care for those with degenerative dementia. Examining the relationship between the cure and care models in primary care offers a unique opportunity for exploring change toward a more holistic approach to health care. The aims of this study were to (a) explore how PCPs approach the care of patients with Alzheimer’s disease (AD), and (b) describe how this care unfolds from the physicians’ perspectives. This was a cross-sectional study of 40 PCPs who completed semistructured interviews as part of a dementia caregiving study. Findings show that PCPs recognize the limits of the cure paradigm and articulate a caring, more holistic model that addresses the psychosocial needs of dementia patients. However, caring is difficult to uphold because of time constraints, emotional burden, and jurisdictional issues. Thus, the care model remains secondary and temporary. PMID:21685311

Theoretical foundations guiding culture change: The work of the Partnerships in Dementia Care Alliance

PubMed Central

Dupuis, Sherry; McAiney, Carrie A; Ploeg, Jenny; de Witt, Lorna

2016-01-01

Longstanding concerns about quality care provision, specifically in the area of long-term care, have prompted calls for changing the culture of care to reflect more client-driven and relationship-centred models. Despite an increase in culture change initiatives in both Canada and the United States, there is insufficient information about the theories and approaches that guide culture change. The purpose of this paper is to describe a culture change initiative currently underway in Canada, the Partnerships in Dementia Care Alliance, and the theoretical foundations informing our work. More specifically, we describe how the theoretical and philosophical underpinnings of the Alzheimer Disease and Related Dementias framework, the authentic partnership approach, participatory action research and Appreciative Inquiry have been integrated to guide a culture change process that encourages working collaboratively, thinking and doing differently and re-imagining new possibilities for changing the culture of dementia care. PMID:24419355

Theoretical foundations guiding culture change: The work of the Partnerships in Dementia Care Alliance.

PubMed

Dupuis, Sherry; McAiney, Carrie A; Fortune, Darla; Ploeg, Jenny; Witt, Lorna de

2016-01-01

Longstanding concerns about quality care provision, specifically in the area of long-term care, have prompted calls for changing the culture of care to reflect more client-driven and relationship-centred models. Despite an increase in culture change initiatives in both Canada and the United States, there is insufficient information about the theories and approaches that guide culture change. The purpose of this paper is to describe a culture change initiative currently underway in Canada, the Partnerships in Dementia Care Alliance, and the theoretical foundations informing our work. More specifically, we describe how the theoretical and philosophical underpinnings of the Alzheimer Disease and Related Dementias framework, the authentic partnership approach, participatory action research and Appreciative Inquiry have been integrated to guide a culture change process that encourages working collaboratively, thinking and doing differently and re-imagining new possibilities for changing the culture of dementia care. © The Author(s) 2014.

Group engagement in persons with dementia: The concept and its measurement.

PubMed

Cohen-Mansfield, Jiska; Hai, Tasmia; Comishen, Michael

2017-05-01

Although a few papers documented benefits of group therapeutic activities for individuals with dementia, there is a dearth of studies that have investigated the effects of group activities on persons with dementia. This paper introduces a theoretical framework of studying group therapeutic recreational activity, the Comprehensive Process Model of Group Engagement, and an assessment tool, the Group Observational Measurement of Engagement (GOME). We also report the psychometric properties of this assessment. One hundred and four persons with dementia took part in ten different group activities, with each activity conducted twice at random order so that 20 activities were observed for each group of participants. Following each group activity, research and therapeutic recreation staff members used the GOME assessment to independently rate participants on individual-level measures of attendance duration and engagement, and group level measures (e.g., positive and negative interactions among group members). Reliability and validity analyses comparing observer ratings for each group activity on the individual-level measures of attendance and engagement showed good psychometric properties. Different measures collected on a group level differed with respect to their psychometric quality. We present a theoretical framework to understand group engagement and present measures that could be used in future research and practice. Copyright © 2017 Elsevier Ireland Ltd. All rights reserved.

An extended review of couple-centred interventions in dementia: Exploring the what and why - Part B.

PubMed

Bielsten, Therése; Hellström, Ingrid

2017-01-01

This scoping review is an extended version of a narrative review of couple-centred interventions in dementia shared in part A and the previous publication in this edition. The rationale for expanding study A emerged through the fact that most dyadic interventions have samples consisting of a majority of couples. The exclusion of interventions with samples of mixed relationships in part A therefore contributed to a narrow picture of joint dyadic interventions for couples in which one partner has a dementia. The aim of this second review is to explore the 'what' (types of interventions) and the 'why' (objectives and outcome measures) of dyadic interventions in which sample consists of a majority of couples/spouses and in which people with dementia and caregivers jointly participate. Method A five-step framework for scoping reviews guided the procedure. Searches were performed in Academic Search Premier, CINAHL, PsycINFO, PubMed, Scopus, and Web of Science. Results Twenty-one studies with various types of psychosocial interventions were included. The main outcome measure for people with dementia was related to cognitive function, respectively caregiver burden and depression for caregivers. Conclusions The findings of this extended review of joint dyadic interventions in dementia are in line with the findings of part A regarding the negative approach of outcomes, lack of a genuine dyadic approach, lack of tailored support, neglect of interpersonal issues and the overlook of the views of people with dementia. This review also recognises that measures of caregiver burden, as well as relationship quality should be considered in samples of mixed relationships due to the different significance of burden and relationship quality for a spouse as opposed to an adult child or friend.

Multidimensional assessment of challenging behaviors in advanced stages of dementia in nursing homes-The insideDEM framework.

PubMed

Teipel, Stefan; Heine, Christina; Hein, Albert; Krüger, Frank; Kutschke, Andreas; Kernebeck, Sven; Halek, Margareta; Bader, Sebastian; Kirste, Thomas

2017-01-01

Assessment of challenging behaviors in dementia is important for intervention selection. Here, we describe the technical and experimental setup and the feasibility of long-term multidimensional behavior assessment of people with dementia living in nursing homes. We conducted 4 weeks of multimodal sensor assessment together with real-time observation of 17 residents with moderate to very severe dementia in two nursing care units. Nursing staff received extensive training on device handling and measurement procedures. Behavior of a subsample of eight participants was further recorded by videotaping during 4 weeks during day hours. Sensors were mounted on the participants' wrist and ankle and measured motion, rotation, as well as surrounding loudness level, light level, and air pressure. Participants were in moderate to severe stages of dementia. Almost 100% of participants exhibited relevant levels of challenging behaviors. Automated quality control detected 155 potential issues. But only 11% of the recordings have been influenced by noncompliance of the participants. Qualitative debriefing of staff members suggested that implementation of the technology and observation platform in the routine procedures of the nursing home units was feasible and identified a range of user- and hardware-related implementation and handling challenges. Our results indicate that high-quality behavior data from real-world environments can be made available for the development of intelligent assistive systems and that the problem of noncompliance seems to be manageable. Currently, we train machine-learning algorithms to detect episodes of challenging behaviors in the recorded sensor data.

Enhancing Communication in Adults with Dementia and Age-Related Hearing Loss

PubMed Central

Mamo, Sara K.; Oh, Esther; Lin, Frank R.

2017-01-01

For many adults with dementia, age-related hearing loss is undiagnosed and/or untreated. Untreated hearing loss can exacerbate common dementia-related behavioral symptoms, such as depression, apathy, agitation. Despite the potential benefits to the individual and the family, pursuing and adopting hearing aids for persons with dementia presents with many challenges. As such, this group of vulnerable older adults is well suited for alternative approaches that adopt an interventional audiology framework. This article reviews alternative hearing care models that we have tested when working with older adults with cognitive impairments. We have found that some individuals show improvements in dementia-related problem behaviors and/or in measures of social engagement after brief aural rehabilitation interventions that provide non-custom amplification. We have developed simple training materials to help family and professional caregivers use communication strategies and non-custom amplification. Providing services that can be integrated into the person's broader dementia care has the potential to improve communication and quality of life for individuals and families. There are opportunities in this population to provide basic, simple strategies and make substantial improvements as long as we adopt approaches that bring the services to the people, instead of bringing the people to us in the audiology clinic. PMID:28522892

Assembling the salon: Learning from alternative forms of body work in dementia care.

PubMed

Ward, Richard; Campbell, Sarah; Keady, John

2016-11-01

This article explores the labour and experiences of a hitherto entirely overlooked section of the dementia care workforce: care-based hairdressers. Reporting on findings from the ESRC-funded 'Hair and Care' project, the analysis and discussion focus upon the 'doing of hair' in the context of dementia care. The authors challenge existing assumptions and approaches to the management of appearance in dementia care, arguing for greater recognition of the subjective and culturally meaningful qualities of a visit to the salon. The article draws upon a wider debate on body work as a framework for the discussion, and considers the employment and working conditions of this largely hidden group of workers in the care system. The article offers an account of the praxis of care-based hairdressing, with particular attention paid to narrative, intercorporeal and place-making practices in the salon, showing how a particular approach to the body shapes the labour, relationships and activities that unfold within it. The authors argue that as an alternative form of body work much can be learned from hairdressing that can inform and enhance the provision of dementia care. © 2016 Foundation for the Sociology of Health & Illness.

[Development and validation of the Inventory of Needs in Memory Impairment (BIG-65): illness-related needs in people with cognitive impairment and dementia].

PubMed

Schmid, R; Eschen, A; Rüegger-Frey, B; Martin, M

2013-06-01

There is growing evidence that individuals with cognitive impairment and dementia require systematic assessment of needs for the selection of optimal treatments. Currently no valid instrument is applicable for illness-related need assessment in this growing population. The purpose of this study was to develop and validate a new instrument ("Bedürfnisinventar bei Gedächtnisstörungen", BIG-65) that systematically assesses illness-related needs. The development was based on an adequate theoretical framework and standardised procedural guidelines and validated to an appropriate sample of individuals attending a Swiss memory clinic (n = 83). The BIG-65 provides a comprehensive range of biopsychosocial and environmental needs items and offers a dementia-friendly structure for the assessment of illness-related needs. The BIG-65 has high face validity and very high test-retest reliability (rtt = 0,916). On average 3.5 (SD = 3.7) unmet needs were assessed. Most frequently mentioned needs were: "forget less" (50%), "better concentration" (23.2%), "information on illness" (20.7%), "information on treatments" (17.1%), "less worry", "less irritable", "improve mood", "improve orientation" (13.4% each). Needs profiles differed between patients with preclinical (subjective cognitive impairment, mild cognitive impairment) and clinical (dementia) diagnosis. The BIG-65 reliably assesses illness-related needs in individuals with moderate dementia. With decreasing cognitive functions or an MMSE <20 points, additional methods such as observation of the emotional expression may be applied. According to our results, individuals with cognitive impairment and dementia pursue individual strategies to stabilize their quality of life level. In addition to the assessment of objective illness symptoms the selection of optimal treatments may profit from a systematic needs assessment to optimally support patients in their individual quality of life strategies.

Content and Quality of Information Provided on Canadian Dementia Websites

PubMed Central

Dillon, Whitney A.; Prorok, Jeanette C.; Seitz, Dallas P.

2013-01-01

Purpose Information about dementia is important for persons with dementia (PWD) and their caregivers and the Internet has become the key source of health information. We reviewed the content and quality of information provided on Canadian websites for Alzheimer’s disease (AD). Methods We used the terms “dementia” and “Alzheimer” in Google to identify Canadian dementia websites. The contents of websites were compared to 16 guideline recommendations provided in Canadian Consensus Conference on Diagnosis and Treatment of Dementia. The quality of information provided on websites was evaluated using the DISCERN instrument. The content and quality of information provided on selected websites were then described. Results Seven websites were identified, three of which provided relatively comprehensive and high-quality information on dementia. Websites frequently provided information about diagnosis of dementia, its natural course, and types of dementia, while other topics were less commonly addressed. The quality of information provided on the websites varied, and many websites had several areas where the quality of information provided was relatively low according to the DISCERN instrument. Conclusions There is variation in the content and quality of dementia websites, although some websites provide high-quality and relatively comprehensive information which would serve as a useful resource for PWD, caregivers, and healthcare providers. Improvements in the content and quality of information provided on AD websites would provide PWD and their caregivers with access to better information. PMID:23440180

Introducing Namaste Care to the hospital environment: a pilot study.

PubMed

St John, Kimberley; Koffman, Jonathan

2017-10-01

The rising prevalence of dementia is impacting on acute hospitals and placing increased expectations on health and social care professionals to improve the support and services they are delivering. It has been recommended that good practice in dementia care relies on adopting a palliative approach to care and meeting people's physical, psychological, social and spiritual needs. Increased dementia training for staff that includes initiatives that promote dignity; enhancing communication skills and recognizing that a person with dementia may be approaching the end of their lives are needed. Our study aim was to explore whether Namaste Care is an acceptable and effective service for people with advanced dementia being cared for on an acute hospital ward. This was an exploratory qualitative interview, pilot study. Individual, semi-structured, face-to-face interviews were conducted with hospital healthcare staff working in an area of the hospital where Namaste Care had been implemented. Data were analysed using the framework approach. Eight interviews were completed with members of the multidisciplinary ward team. Two themes were identified: (I) difficulties establishing relationships with people with dementia in hospital (subthemes: lack of time and resources, lack of confidence leading to fear and anxiety); (II) the benefits of a Namaste Care service in an acute hospital setting (subthemes: a reduction in agitated behavior; connecting and communicating with patients with dementia using the senses; a way of showing people with dementia they are cared for and valued). This small-scale study indicates that Namaste Case has the potential to improve the quality of life of people with advanced dementia being cared for in an acute hospital setting. However, further research is required to explore more specifically its benefits in terms of improved symptom management and wellbeing of people with dementia on acute hospitals wards.

Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale: secondary analysis of RightTimePlaceCare data.

PubMed

Römhild, Josephine; Fleischer, Steffen; Meyer, Gabriele; Stephan, Astrid; Zwakhalen, Sandra; Leino-Kilpi, Helena; Zabalegui, Adelaida; Saks, Kai; Soto-Martin, Maria; Sutcliffe, Caroline; Rahm Hallberg, Ingalill; Berg, Almuth

2018-06-28

To assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement. Cross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n = 854 receiving home care and n = 476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis. The overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item 'Marriage' weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings. Proxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.

Spiritual Diversity and Living with Early-Stage Dementia.

PubMed

McGee, Jocelyn Shealy; Zhao, Holly Carlson; Myers, Dennis R; Seela Eaton, Hannah

2018-01-01

Attention to spiritual diversity is necessary for the provision of culturally informed clinical care for people with early-stage dementia and their family members. In this article, an evidence-based theoretical framework for conceptualizing spiritual diversity is described in detail (Pargament, 2011). The framework is then applied to two clinical case studies of people living with early-stage dementia to elucidate the multilayered components of spiritual diversity in this population. The case studies were selected from a larger mixed-methods study on spirituality, positive psychological factors, health, and well-being in people living with early-stage dementia and their family members. To our knowledge this is the first systematic attempt to apply a theoretical framework for understanding spiritual diversity in this population. Implications for clinical practice are provided.

Quality of Care Provided by a Comprehensive Dementia Care Comanagement Program.

PubMed

Jennings, Lee A; Tan, Zaldy; Wenger, Neil S; Cook, Erin A; Han, Weijuan; McCreath, Heather E; Serrano, Katherine S; Roth, Carol P; Reuben, David B

2016-08-01

Multiple studies have shown that quality of care for dementia in primary care is poor, with physician adherence to dementia quality indicators (QIs) ranging from 18% to 42%. In response, the University of California at Los Angeles (UCLA) Health System created the UCLA Alzheimer's and Dementia Care (ADC) Program, a quality improvement program that uses a comanagement model with nurse practitioner dementia care managers (DCM) working with primary care physicians and community-based organizations to provide comprehensive dementia care. The objective was to measure the quality of dementia care that nurse practitioner DCMs provide using the Assessing Care of Vulnerable Elders (ACOVE-3) and Physician Consortium for Performance Improvement QIs. Participants included 797 community-dwelling adults with dementia referred to the UCLA ADC program over a 2-year period. UCLA is an urban academic medical center with primarily fee-for-service reimbursement. The percentage of recommended care received for 17 dementia QIs was measured. The primary outcome was aggregate quality of care for the UCLA ADC cohort, calculated as the total number of recommended care processes received divided by the total number of eligible quality indicators. Secondary outcomes included aggregate quality of care in three domains of dementia care: assessment and screening (7 QIs), treatment (6 QIs), and counseling (4 QIs). QIs were abstracted from DCM notes over a 3-month period from date of initial assessment. Individuals were eligible for 9,895 QIs, of which 92% were passed. Overall pass rates of DCMs were similar (90-96%). All counseling and assessment QIs had pass rates greater than 80%, with most exceeding 90%. Wider variation in adherence was found among QIs addressing treatments for dementia, which patient-specific criteria triggered, ranging from 27% for discontinuation of medications associated with mental status changes to 86% for discussion about acetylcholinesterase inhibitors. Comprehensive dementia care comanagement with a nurse practitioner can result in high quality of care for dementia, especially for assessment, screening, and counseling. The effect on treatment QIs is more variable but higher than previous reports of physician-provided dementia care. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Risk of Care Home Placement following Acute Hospital Admission: Effects of a Pay-for-Performance Scheme for Dementia.

PubMed

Kasteridis, Panagiotis; Mason, Anne; Goddard, Maria; Jacobs, Rowena; Santos, Rita; Rodriguez-Sanchez, Beatriz; McGonigal, Gerard

2016-01-01

The Quality and Outcomes Framework, or QOF, rewards primary care doctors (GPs) in the UK for providing certain types of care. Since 2006, GPs have been paid to identify patients with dementia and to conduct an annual review of their mental and physical health. During the review, the GP also assesses the carer's support needs, including impact of caring, and ensures that services are co-ordinated across care settings. In principle, this type of care should reduce the risk of admission to long-term residential care directly from an acute hospital ward, a phenomenon considered to be indicative of poor quality care. However, this potential effect has not previously been tested. Using English data from 2006/07 to 2010/11, we ran multilevel logit models to assess the impact of the QOF review on the risk of care home placement following emergency admission to acute hospital. Emergency admissions were defined for (a) people with a primary diagnosis of dementia and (b) people with dementia admitted for treatment of an ambulatory care sensitive condition. We adjusted for a wide range of potential confounding factors. Over the study period, 19% of individuals admitted to hospital with a primary diagnosis of dementia (N = 31,120) were discharged to a care home; of those admitted for an ambulatory care sensitive condition (N = 139,267), the corresponding figure was 14%. Risk factors for subsequent care home placement included older age, female gender, vascular dementia, incontinence, fall, hip fracture, and number of comorbidities. Better performance on the QOF review was associated with a lower risk of care home placement but only when the admission was for an ambulatory care sensitive condition. The QOF dementia review may help to reduce the risk of long-term care home placement following acute hospital admission.

Sexuality, aging, and dementia.

PubMed

Benbow, Susan Mary; Beeston, Derek

2012-07-01

Sexuality in later life and its relationship to dementia is a neglected topic: greater understanding of the area has the potential to contribute to the quality of life of people with dementia, their family members, and formal carers. We review current knowledge about sexuality, aging, and dementia. We undertook a review of the recent literature to examine of the following areas: what is known about sexuality and aging, and about attitudes to sexuality and aging; what is known about the relevance of sexuality and aging to people living with dementia and their care; and the management of sexual behaviors causing concern to others. Sexual activity decreases in frequency with increasing age but many older people remain sexually active; there is no age limit to sexual responsiveness; and sexuality is becoming more important to successive cohorts of older people, including people living with dementia and gay, lesbian, bisexual, and transgendered elderly people. Attitudes and beliefs toward sexuality and aging are strongly influenced by stereotypes and myths, not only among the general public but also among those working in health and social care. Professional bodies should include sexuality, aging, and dementia in their training curricula. More work is needed on the impact of environmental issues, particularly in group living situations, on older adults' sexuality, and on consent issues. Ethical decision-making frameworks can be useful in practice. Organizations should investigate how to support staff in avoiding a problem-orientated approach and focus on providing holistic person-centered care.

Implementation of personalized music listening for assisted living residents with dementia.

PubMed

Murphy, Kelly; Liu, Winston W; Goltz, Daniel; Fixsen, Emma; Kirchner, Stephen; Hu, Janice; White, Heidi

2018-05-03

Personalized music listening (PML) has been touted as a safe and inexpensive means of improving the quality of life, mood, and behavior of persons with dementia. A PML program was implemented in an assisted living facility and evaluated across the five dimensions of the RE-AIM framework: reach, effectiveness, adoption, implementation, and maintenance. The first 17 residents invited to participate were enrolled and followed over eight months. Effectiveness was evident in staff-reported mood improvement in 62% of encounters. Adoption was evident in qualitative feedback collected from medication technicians. Implementation was facilitated by low costs, engagement of external volunteers, highlighting outcomes that are relevant to staff, and attention to playlists over time. Maintenance required continued engagement of volunteers, ongoing fundraising, attention to facility staff engagement, and iterative adjustments to the program framework as staffing changes occurred. PML was found to be a meaningful intervention that is possible at a reasonable cost. Copyright © 2018 Elsevier Inc. All rights reserved.

Using dementia as the organizing principle when caring for patients with dementia and comorbidities.

PubMed

Lazaroff, Alan; Morishita, Lynne; Schoephoerster, George; McCarthy, Teresa

2013-01-01

Most patients with dementia have other chronic health concerns as well. Because dementia affects every aspect of a patient's life, its consequences need to be considered in each care decision, including the treatment of comorbid illnesses. In this article, we present a framework for organizing the care of such patients around their dementia, rather than around their other conditions.

How Can We Best Assess the Quality of Life of People with Dementia? The Bath Assessment of Subjective Quality of Life in Dementia (BASQID)

ERIC Educational Resources Information Center

Trigg, Richard; Skevington, Suzanne M.; Jones, Roy W.

2007-01-01

Purpose: The study aim was to develop a measure of self-reported quality of life (QoL) for people with mild to moderate dementia based on their views--the Bath Assessment of Subjective Quality of Life in Dementia (BASQID). Design and Methods: We developed the measure through multiple stages. Two field tests of the measure (ns = 60 and 150)…

The Determinants of Quality of Life of Nursing Home Residents with Young-Onset Dementia and the Differences between Dementia Subtypes.

PubMed

Appelhof, Britt; Bakker, Christian; Van Duinen-van den Ijssel, Jeannette C L; Zwijsen, Sandra A; Smalbrugge, Martin; Verhey, Frans R J; de Vugt, Marjolein E; Zuidema, Sytse U; Koopmans, Raymond T C M

2017-01-01

The aims of this study are to (1) explore the determinants of quality of life (QoL) in nursing home residents with young-onset dementia (YOD), (2) investigate whether there are differences between dementia subtypes (Alzheimer dementia, vascular/mixed dementia, frontotemporal dementia, other) regarding these determinants, and (3) compare QoL profiles of YOD nursing home residents across dementia subtypes. This cross-sectional study included 207 nursing home residents. Multilevel modeling was used to determine the relationships between QoL and neuropsychiatric symptoms (NPS), dementia severity, psychotropic drug use (PDU), dementia subtype, age, and gender. Additional multilevel models were used to compare aspects of QoL between dementia subtypes. Residents' QoL was negatively associated with advanced dementia, PDU, and NPS. In general, the relationships between the determinants and QoL were similar across the dementia subtypes. Aspects of QoL differed by dementia subtype. Residents with frontotemporal dementia showed less negative emotions, accepted more help and experienced better quality of relationships with professional caregivers, had a more positive self-image, felt more comfortable in the nursing home environment, and experienced lower quality of social relationships. Considering the high rates of NPS and PDU in YOD residents and their negative associations with QoL, we recommend emphasizing services to manage and reduce NPS and PDU in nursing home residents with YOD. Furthermore, our findings suggest accounting for differences in aspects of QoL by dementia subtype to address specific needs and thereby improve QoL. © 2017 The Author(s) Published by S. Karger AG, Basel.

Neuropsychiatric symptoms and quality of life in patients in the final phase of dementia.

PubMed

Koopmans, Raymond T C M; van der Molen, Marloes; Raats, Monique; Ettema, Teake P

2009-01-01

To assess neuropsychiatric symptoms and quality of life in a group of patients in the final phase of dementia. All patients with dementia (n = 216) residing on dementia special care units of two Dutch nursing homes were included in the study provided they met the criteria for the final phase of dementia. Neuropsychiatric symptoms were assessed with the Neuropsychiatric Inventory Nursing Home version (NPI-NH) and the Cohen Mansfield Agitation Inventory (CMAI). Quality of life was assessed with the QUALIDEM. Of the 216 dementia patients 39 met the criteria for the final phase of dementia. The patients showed a specific pattern of behaviours with a high prevalence of apathy, agitation and behaviours that were mainly observed during morning care such as making strange noises, grabbing, performing repetitious mannerism, spitting, hitting, screaming and pushing. Overall quality of life of these patients in the final phase of dementia was moderate. In this small sample, patients in the final phase of dementia show specific behavioural problems, that mainly should be addressed with psychosocial interventions. (c) 2008 John Wiley & Sons, Ltd.

Non-Pharmacological Approaches to Reducing Negative Behavioral Symptoms: A Scoping Review

PubMed Central

Wong, Carin; Leland, Natalie E.

2017-01-01

Background The management of negative behavioral symptoms among residents with dementia is a challenge that nursing homes face in delivering quality care. Objective Examine evidence documenting non-pharmacological interventions that reduce negative behavioral symptoms among nursing home residents with dementia and the role occupational therapy practitioners have in this area. Method A scoping review was completed for intervention studies published from 1987 to 2014, targeting negative behavioral symptoms among nursing home residents over 60 years of age with dementia. Interventions were categorized based on the AOTA Occupational Therapy Practice Framework. Results Twenty-two studies met the inclusion criteria. Four types of interventions were identified: occupation-based interventions, context and environment interventions, exercise interventions, and daily routine-based interventions. Conclusion The non-pharmacological interventions were found to align with the scope of occupational therapy. This suggests that occupational therapy practitioners can contribute to the development and evaluation of non-pharmacological interventions aimed to reduce negative behavioral symptoms. PMID:27504691

Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers.

PubMed

Samsi, Kritika; Manthorpe, Jill

2013-06-01

Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored. Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts. Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers' active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this. Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.

Dementia and well-being: A conceptual framework based on Tom Kitwood's model of needs.

PubMed

Kaufmann, Elke G; Engel, Sabine A

2016-07-01

The topic of well-being is becoming increasingly significant as a key outcome measure in dementia care. Previous work on personhood of individuals with dementia suggests that their subjective well-being can be described in terms of comfort, inclusion, identity, occupation and attachment The study aimed to examine Tom Kitwood's model of psychological needs and well-being in dementia based on the self-report of individuals with moderate or severe dementia and to differentiate and elaborate this model in the light of the empirical qualitative data. Nineteen inhabitants of a special long-term care unit were interviewed using a semi-structured interview. Data were analysed using content analysis. Thirty components within Kitwood's model have been identified. A conceptual framework of subjective well-being in dementia was developed based on a theoretical background. The study was able to find indications that Kitwood's model has empirical relevance. Nevertheless, it requires to be extended by the domain agency. Furthermore, the study suggests that individuals with dementia are important informants of their subjective well-being. © The Author(s) 2014.

Factors associated with the quality of life of family carers of people with dementia: A systematic review.

PubMed

Farina, Nicolas; Page, Thomas E; Daley, Stephanie; Brown, Anna; Bowling, Ann; Basset, Thurstine; Livingston, Gill; Knapp, Martin; Murray, Joanna; Banerjee, Sube

2017-05-01

Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Searches on terms including "carers," "dementia," "family," and "quality of life" in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes. A total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies (n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer-patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future. The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it. Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.

Tailored educational intervention for primary care to improve the management of dementia: the EVIDEM-ED cluster randomized controlled trial.

PubMed

Wilcock, Jane; Iliffe, Steve; Griffin, Mark; Jain, Priya; Thuné-Boyle, Ingela; Lefford, Frances; Rapp, David

2013-11-20

Early diagnosis of dementia is important because this allows those with dementia and their families to engage support and plan ahead. However, dementia remains underdetected and suboptimally managed in general practice. Our objective was to test the effect of a workplace-based tailored educational intervention developed for general practice on the clinical management of people with dementia. The tailored educational intervention was tested in an unblinded cluster randomized controlled trial with a pre/post-intervention design, with two arms: usual/normal care control versus educational intervention. The primary outcome measure was an increase in the proportion of patients with dementia who received at least two documented dementia-specific management reviews per year. Case identification was a secondary outcome measure. 23 practices in South-East England participated. A total of 1,072 patients with dementia (intervention: 512, control: 560) had information in their medical records showing the number of reviews within 12 months (or a proportion of) before intervention or randomization and within 12 months (or a proportion of) after. The mean total number of dementia management reviews after the educational intervention for people with dementia was 0.89 (SD 1.09; minimum 0; median 1; maximum 8) compared with 0.89 (SD 0.92; minimum 0; median 1; maximum 4) before intervention. In the control group prior to randomization the mean total number of dementia management reviews was 1.66 (SD 1.87; minimum 0; median 1; maximum 12) and in the period after randomization it was 1.56 (SD 1.79; minimum 0; median 1; maximum 11). Case detection rates were unaffected. The estimated incidence rate ratio for intervention versus control group was 1.03 (P = 0.927, 95% CI 0.57 to 1.86). The trial was timely, coinciding with financial incentives for dementia management in general practice (through the Quality Outcomes Framework); legal imperatives (in the form of the Mental Capacity Act 2005); policy pressure (The National Dementia Strategy 2009); and new resources (such as dementia advisors) that increased the salience of dementia for general practitioners. Despite this the intervention did not alter the documentation of clinical management of patients with dementia in volunteer practices, nor did it increase case identification. NCT00866099/Clinical Trials.

The role of higher education in transforming the quality of dementia care: dementia studies at the University of Bradford.

PubMed

Downs, M; Capstick, A; Baldwin, P C; Surr, C; Bruce, E

2009-04-01

There is now widespread concern about the inadequate care and support provided to people with dementia from diagnosis to death. It is acknowledged that while there is a range of effective ways to care for and support people with dementia and their families from diagnosis to death, these have yet to become integral to practice. In England, for example, the National Dementia Strategy seeks to transform the quality of dementia care. One of the key components to transforming the quality of care is to ensure we have an informed and effective workforce. We argue here that in order to transform the quality of care we need to distinguish between the aims of training and education. Whilst there is a place for skills-based workplace training, Higher Education in dementia studies has a key role to play in the provision of specialist knowledge and skills in dementia care emphasizing as it does the development of critical thinking, reflection and action. In this paper we describe dementia studies at Bradford University available at both undergraduate and postgraduate levels. We outline their aims and learning outcomes, curricula, approach to teaching, learning and assessment. We describe the nature of students who study with us, noting their fit with the Higher Education Funding Council in England's agenda for widening participation in higher education. Higher Education in dementia studies has a unique role to play in equipping practitioners and professionals with the information, skills and attitudes to realize the potential for quality of life for people with dementia and their families.

[Quality of life in dementia, opinions among people with dementia, their professional caregivers, and in literature].

PubMed

Gerritsen, D L; Dröes, R M; Ettema, T P; Boelens, E; Bos, J; Meihuizen, L; de Lange, J; Schölzel-Dorenbos, C J M; Hoogeveen, F

2010-12-01

Different definitions of quality of life (QOL) are found in the literature. This raised the question which domains are viewed as really important by persons with dementia. In an explorative study the opinions of persons with dementia (community-dwelling and living in nursing homes), were compared to those of professional carers and instruments for QOL in dementia. Data were gathered through interviews, focus groups and literature study. Most QOL-domains mentioned as important by persons with dementia were also acknowledged by carers and in measurement instruments. Some domains, however, were not mentioned by the carers ('sense of aesthetics', 'financial situation', 'being useful' and 'spirituality'), or not selected in the measuring instruments ('security and privacy', 'self-determination and freedom', 'being useful' and 'spirituality'). This indicates differences in perspectives on quality of life between persons with dementia, professional caregivers and researchers. Subsequently it was studied to what degree professionals focus on the QoL-domains that persons with dementia consider essential. Caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire (N = 374). They reported to focus at least to some degree on most domains considered important by persons with dementia. However, little attention was paid to the domains 'financial situation' and 'being useful'. Professionals offering daytime activities focused more than 24-hour care staff on 'attachment', 'enjoyment of activities', 'sense of aesthetics', and 'being useful'. This article is a translation and merging of 1) Dröes et al. Quality of life in dementia in perspective; an explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia: The International Journal 2006; 5 (4): 533-558, and 2) Gerritsen et al. Differences in perspective: do professional caregivers focus on the Quality of life domains that are important for people with dementia? American Journal of Alzheimer's Disease and Other Dementias 2007; 22:176-183.

Dementia quality of life instrument--construct and concurrent validity in patients with mild to moderate dementia.

PubMed

Voigt-Radloff, S; Leonhart, R; Schützwohl, M; Jurjanz, L; Reuster, T; Gerner, A; Marschner, K; van Nes, F; Graff, M; Vernooij-Dassen, M; Rikkert, M O; Holthoff, V; Hüll, M

2012-03-01

To translate the Dementia quality of life instrument (DQoL) into German and assess its construct and concurrent validity in community-dwelling people with mild to moderate dementia. Dementia quality of life instrument data of two pooled samples (n=287) were analysed regarding ceiling and floor effects, internal consistency, factor reliability and correlations with corresponding scales on quality of life (Quality of Life in Alzheimer's Disease and SF-12), cognition (Mini-Mental State Examination, Alzheimer's Disease Assessment Scale - cognitive), depression (Cornell Scale for Depression in Dementia) and activities of daily living (Interview of Deterioration in Daily Living Activities in Dementia). We found no floor effects (<2%), minor ceiling effects (1-11%), moderate to good internal consistency (Cronbach's α: 0.6-0.8) and factor reliability (0.6-0.8), moderate correlations with self-rated scales of quality of life (Spearman coefficient: 0.3-0.6) and no or minor correlations with scores for cognition, depression or activities of daily living (r<0.3). The original five-factor model could not be confirmed. The DQoL can be used in dementia research for assessing positive and negative affect, feelings of belonging and self-esteem. The findings suggest further research to improve the structure of the scales aesthetics, feelings of belonging and self-esteem. © 2011 The Author(s). European Journal of Neurology © 2011 EFNS.

Dementia and Friendship: The Quality and Nature of the Relationships That Remain

ERIC Educational Resources Information Center

Harris, Phyllis Braudy

2013-01-01

Friendships are an integral part of the human experience. Yet, dementia often takes a toll on social relationships, and many friends withdraw. This research, however, focuses on friendships that remain, despite a diagnosis of dementia. It examines the quality of the friendships of people with dementia and long-term friendships. Data were collected…

Associations between Race and Dementia Status and the Quality of End-of-Life Care.

PubMed

Luth, Elizabeth A; Prigerson, Holly G

2018-04-05

Non-Hispanic black and dementia patients receive more invasive and futile treatment at end of life (EOL) relative to others. Little is known about the relationship between race/ethnicity, dementia, and EOL care quality. Identify the relationship between race/ethnicity, dementia, and proxy reporters' evaluation of EOL care quality in older adults. Latent class analysis (LCA) of national survey data. 1588 deceased Medicare beneficiaries age 65 and older from the National Health and Aging Trends Study (2011-2016). LCA identified three types of quality EOL care using nine measures of symptom management, quality of healthcare encounters, and dignified treatment. Race and dementia were primary predictors of EOL care quality type. Adjusted models controlled for decedent education, sex, marital status, age, number of illnesses, number of hospitalizations, self-rated health, place of death, hospice involvement, and proxy relationship to decedent and familiarity with care. Over 20% of proxies report that dying individuals experienced suboptimal EOL care quality, characterized by pain, sadness, poor communication, and inattention to personal care needs. In adjusted analyses, proxies for non-Hispanic black decedents were less likely to provide negative care assessments than proxies for non-Hispanic white decedents (adjusted odds ratio [AOR]: 0.58; 95% confidence interval [CI]: 0.40-0.86). Proxies for decedents with dementia were less likely to provide negative assessments than proxies for decedents without dementia (AOR: 0.70; 95% CI: 0.51-0.97). Efforts to improve EOL care quality are needed. More positive EOL care quality assessments for non-Hispanic Black and dementia decedents appear counterintuitive given research demonstrating that these groups of individuals are likely to have received suboptimal EOL care. Because caregiver expectations for care may differ by decedent race and dementia status, research is needed to explore the role of caregiver expectations for EOL care to explain these paradoxical findings.

The Role of Family Functioning in the Stress Process of Dementia Caregivers: A Structural Family Framework

ERIC Educational Resources Information Center

Mitrani, Victoria B.; Lewis, John E.; Feaster, Daniel J.; Czaja, Sara J.; Eisdorfer, Carl; Schulz, Richard; Szapocznik, Jose

2006-01-01

Purpose: The purpose of the study was to evaluate the role of family functioning in the stress process in a sample of caregivers of dementia patients by using a structural family framework. The stress-process model of caregiver distress included family functioning as an intervening variable in the relationship between objective burden and…

Development of the Japanese version of the Quality of Life in Late-stage Dementia Scale.

PubMed

Nagata, Yuma; Tanaka, Hiroyuki; Ishimaru, Daiki; Uematsu, Masayasu; Naito, Yasuo; Nishikawa, Takashi

2018-03-01

Until now, there has been no instrument to measure the quality of life (QoL) of patients with severe dementia in Japan. The purpose of this study was to translate the Quality of Life in Late-stage Dementia Scale and to evaluate the reliability and validity of the Japanese version (QUALID-J). We translated the Quality of Life in Late-stage Dementia into Japanese with permission from the original authors. We assessed a total of 70 dementia patients (14 men, 56 women; mean age: 87.4 ± 7.9 years) with the QUALID-J. The test-retest and inter-rater reliability of the QUALID-J was significant. With regard to the criterion-related validity, the correlation coefficient for the total score between the QUALID-J and Quality of Life for Alzheimer's Disease was -0.287 (P < 0.05). With regard to the construct validity, the QUALID-J total score was significantly correlated with the Mini-Mental State Examination (ρ = -0.346, P < 0.01), the Cognitive Test for Severe Dementia (ρ = -0.323, P < 0.01), the Neuropsychiatry Inventory-Nursing Home version (ρ = 0.386, P < 0.01), the Cornell Scale for Depression in Dementia (ρ = 0.262, P < 0.05), the Physical Self-Maintenance Scale (ρ = -0.283, P < 0.05), and the Pain Assessment in Advanced Dementia (ρ = 0.530, P < 0.01). The results of this study showed that the QUALID-J is a reliable and valid quality of life scale for severe dementia. This scale finally enables an adequate assessment of the quality of life of patients with severe dementia in Japan, which has not been possible until now. © 2018 Japanese Psychogeriatric Society.

Quality in residential care from the perspective of people living with dementia: The importance of personhood.

PubMed

Milte, R; Shulver, W; Killington, M; Bradley, C; Ratcliffe, J; Crotty, M

2016-01-01

Providing quality care for people with dementia to meet the growing demand for services is a significant challenge to Australia and globally. When it comes to planning for current and future care needs, limited information is available on what people living with dementia and their family members consider the meaning of "quality" in residential care services. To describe the meaning of quality residential care from the perspective of people with cognitive impairment and their family members. Qualitative data collection via in-depth interviews and focus groups was undertaken with people with dementia or cognitive impairment living in residential care or the community (n=15), and family members of people with dementia (n=26). Thematic analysis was undertaken to identify key themes. The theme of supporting personhood was identified as the overarching concept of importance to both people with dementia and their family members and as the foundation for quality care. There were subtle differences in how this concept was expressed by people with dementia themselves and their family members. However, for both groups, access to meaningful activities and opportunities to feel useful and valued were identified as important ways to support personhood in residential care. Separate to this theme of personhood, family members also talked about the importance of a supportive physical environment in the care home, while for the people with dementia themselves maintaining a connection with family was an important contributor to their experience of good quality residential care. Supporting personhood was identified as a critical key concept underpinning quality residential aged care, from the perspective of both people with cognitive impairment and their family members. This highlights the important contribution that the psychological and social characteristics of care make to providing a good quality residential care experience from the perspective of consumers with dementia. Copyright © 2015 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

Evaluation of the 'Ladder to the Moon, Culture Change Studio Engagement Programme' staff training: Two quasi-experimental case studies.

PubMed

Guzmán, Azucena; Wenborn, Jennifer; Swinson, Tom; Orrell, Martin

2017-09-01

To evaluate the impact of the CCSEP on care home staff in two care settings for older people in one nursing home and one residential home. Care homes provide personal care and accommodation for older people. The English Dementia Strategy aims to improve the quality of service provision for people with dementia. This includes specific mention of improving the quality of life in care homes and as such includes objectives related to developing the workforce knowledge and skills. The Ladder to the Moon Culture Change Studio Engagement Programme (CCSEP) is a staff training approach based on the Positive Psychology framework that uses theatre- and film-based activities. This study used a wait-list controlled design. However, the data analysis plan was amended to reflect difficulties in data collection, and a quasi-experimental case study approach was consequently utilised. Outcome measures for staff attitudes and beliefs were as follows: Sense of Competence in Dementia Care Staff; Approaches to Dementia Questionnaire; Job Satisfaction Index; Brief Learning Transfer System Inventory; and Scale of Positive and Negative Experience. The Quality of Interaction Schedule (QUIS) was used to observe changes in staff-resident interaction. Fifty staff in two care homes completed the questionnaires and forty-one undertook formal CCSEP training. In Home A (nursing home), there was no significant change in any of the measures. In Home B (residential home), the QUIS showed an increase in positive interactions post intervention; a significant increase in the Building Relationship subscale of Sense of Competence; and a significant increase in staff sense of hopefulness towards people with dementia. The Brief Learning Transfer System Inventory showed a significant decrease post-intervention. The intervention did not significantly affect the happiness or job satisfaction of care home staff. The results of this study provide tentative evidence about the efficacy of this staff training programme. Some significant improvement in staff attitudes to people with dementia, staff sense of competence and positive staff-resident interactions were found in one of two homes. It is likely that the organisational problems affecting the other care home limited the implementation and therefore efficacy of the intervention there. The results therefore suggest that when a supportive management structure is in place, CCSEP may be more effective in improving staff attitudes, sense of competence and interactions with residents. © 2017 John Wiley & Sons Ltd.

The underlying meaning of stimuli: Impact on engagement of persons with dementia

PubMed Central

Cohen-Mansfield, Jiska; Thein, Khin; Dakheel-Ali, Maha; Marx, Marcia S.

2010-01-01

In a previous article, we discussed a theoretical framework asserting that a combination of stimulus attributes, person attributes and environmental attributes as well as interactions among these affect engagement with stimuli by persons with dementia (Cohen-Mansfield et al., in press). Based on this framework, we tested the impact on engagement of the personal meaning of stimuli, specifically examining work-like stimuli, stimuli based on the person’s identity, and gender role based activities. We hypothesized that having such meanings will render stimuli more engaging than stimuli without these meanings. Participants were 193 residents of 7 Maryland nursing homes. All participants had a diagnosis of dementia. Results confirmed the hypotheses, demonstrating that the meaning of the stimulus impacts engagement shown by persons with dementia. Interventions that involve objects or tasks with meaning specific to the person with dementia will be more likely to engage that person. Future research could explore more identity roles as well as other mechanisms affecting engagement. PMID:20392502

The Association between Quality Improvement Initiatives in Dementia Care and Supportive Psychosocial Work Environments in Nursing Homes.

PubMed

Nakanishi, Miharu; Tei-Tominaga, Maki

2018-05-08

Background : Quality improvement initiatives can help nursing homes strengthen psychosocial work environments. The aim of the present study was to examine the association between supportive psychosocial work environment, and professional and organizational characteristics regarding quality improvement initiatives in dementia care. Methods : A paper questionnaire survey was administered to a convenience sample of 365 professional caregivers in 12 special nursing homes in Japan. Psychosocial work environment was assessed using the Social Capital and Ethical Climate at the Workplace Scale to calculate a score of social capital in the workplace, ethical leadership, and exclusive workplace climate. Variables for quality improvement initiatives included type of home (unit-type or traditional), presence of additional benefit for dementia care, and professionalism in dementia care among caregivers evaluated using the Japanese version of the Sense of Competence in Dementia Care Staff Scale. Results : Elevated professionalism and unit-type home were significantly associated with high social capital, strong ethical leadership, and low exclusive workplace climate. The presence of dementia care benefit was not associated with any subscale of psychosocial work environment. Conclusions : Quality improvement initiatives to foster supportive psychosocial work environment should enhance professionalism in dementia care with unit-based team building of professional caregivers in special nursing homes.

Linguistic validation and reliability properties are weak investigated of most dementia-specific quality of life measurements-a systematic review.

PubMed

Dichter, Martin Nikolaus; Schwab, Christian G G; Meyer, Gabriele; Bartholomeyczik, Sabine; Halek, Margareta

2016-02-01

For people with dementia, the concept of quality of life (Qol) reflects the disease's impact on the whole person. Thus, Qol is an increasingly used outcome measure in dementia research. This systematic review was performed to identify available dementia-specific Qol measurements and to assess the quality of linguistic validations and reliability studies of these measurements (PROSPERO 2013: CRD42014008725). The MEDLINE, CINAHL, EMBASE, PsycINFO, and Cochrane Methodology Register databases were systematically searched without any date restrictions. Forward and backward citation tracking were performed on the basis of selected articles. A total of 70 articles addressing 19 dementia-specific Qol measurements were identified; nine measurements were adapted to nonorigin countries. The quality of the linguistic validations varied from insufficient to good. Internal consistency was the most frequently tested reliability property. Most of the reliability studies lacked internal validity. Qol measurements for dementia are insufficiently linguistic validated and not well tested for reliability. None of the identified measurements can be recommended without further research. The application of international guidelines and quality criteria is strongly recommended for the performance of linguistic validations and reliability studies of dementia-specific Qol measurements. Copyright © 2016 Elsevier Inc. All rights reserved.

Change in quality of life in older people with dementia participating in Paro-activity: a cluster-randomized controlled trial.

PubMed

Jøranson, Nina; Pedersen, Ingeborg; Rokstad, Anne Marie Mork; Ihlebaek, Camilla

2016-12-01

The aim of this study was to investigate effects of robot-assisted group activity with Paro on quality of life in older people with dementia. Nursing home residents with severe dementia often experience social withdrawal and lower quality of life, which are suggested to be enhanced by non-pharmacological interventions. A cluster-randomized controlled trial. Ten nursing home units were randomized to robot-assisted intervention or control group (treatment as usual). Data were collected between March 2013-September 2014. 27 participants participated in group activity for 30 minutes twice a week over 12 weeks, 26 participated in the control group. Change in quality of life was assessed by local nurses through the Quality of Life in Late-Stage Dementia scale at baseline, after end of intervention and at 3 months follow-up. The scale and regular psychotropic medication were analysed stratified by dementia severity. Analysis using mixed model, one-way anova and linear regression were performed. An effect was found among participants with severe dementia from baseline to follow-up showing stable quality of life in the intervention group compared with a decrease in the control group. The intervention explained most of the variance in change in the total scale and in the subscales describing Tension and Well-being for the group with severe dementia. The intervention group used significantly less psychotropic medication compared with the control group after end of intervention. Pleasant and engaging activities facilitated by nursing staff, such as group activity with Paro, could improve quality of life in people with severe dementia. The trial is in adherence with the CONSORT statement and is registered at www.clinicaltrials.gov (study ID number: NCT02008630). © 2016 John Wiley & Sons Ltd.

Quality of Life of Nursing Home Residents with Dementia: A Comparison of Perspectives of Residents, Family, and Staff

ERIC Educational Resources Information Center

Crespo, Maria; Bernaldo de Quiros, Monica; Gomez, M. Mar; Hornillos, Carlos

2012-01-01

Purpose: Quality of Life (QoL) has become increasingly valued as a key outcome in dementia both in clinical practice and in research. This study compares the QoL of long-term residents with dementia as assessed by the individuals, their relatives, and their care staff. Design and Methods: Data on residents with dementia were collected in 11…

Feedback on end-of-life care in dementia: the study protocol of the FOLlow-up project.

PubMed

Boogaard, Jannie A; van Soest-Poortvliet, Mirjam C; Anema, Johannes R; Achterberg, Wilco P; Hertogh, Cees M P M; de Vet, Henrica C W; van der Steen, Jenny T

2013-08-07

End-of-life care in dementia in nursing homes is often found to be suboptimal. The Feedback on End-of-Life care in dementia (FOLlow-up) project tests the effectiveness of audit- and feedback to improve the quality of end-of-life care in dementia. Nursing homes systematically invite the family after death of a resident with dementia to provide feedback using the End-of-Life in Dementia (EOLD) - instruments. Two audit- and feedback strategies are designed and tested in a three-armed Randomized Controlled Trial (RCT): a generic feedback strategy using cumulative EOLD-scores of a group of patients and a patient specific feedback strategy using EOLD-scores on a patient level. A total of 18 nursing homes, three groups of six homes matched on size, geographic location, religious affiliation and availability of a palliative care unit were randomly assigned to an intervention group or the control group. The effect on quality of care and quality of dying and the barriers and facilitators of audit- and feedback in the nursing home setting are evaluated using mixed-method analyses. The FOLlow-up project is the first study to assess and compare the effect of two audit- and feedback strategies to improve quality of care and quality of dying in dementia. The results contribute to the development of practice guidelines for nursing homes to monitor and improve care outcomes in the realm of end-of-life care in dementia. The Netherlands National Trial Register (NTR). NTR3942.

The nutritional care of people living with dementia at home: A scoping review.

PubMed

Mole, Louise; Kent, Bridie; Abbott, Rebecca; Wood, Chloë; Hickson, Mary

2018-01-24

There are an increasing number of people with dementia living in their own home for longer, often supported by a family member. The symptoms of dementia can affect an individual's nutritional status, which can lead to a reduced quality of life for the person with dementia and their family members. A scoping review was conducted from July 2016 until September 2016, using a recognised framework, to explore what is currently known, and identify any gaps in the research regarding the nutritional care of people living with dementia at home. This included any interventions that may have been trialled or implemented, and the views of those living with dementia, carers and clinicians. Six electronic databases were searched from inception to July 2016. A review team was involved in screening and data extraction for selected articles. Published qualitative and quantitative studies were included that explored the nutritional care of people living with dementia at home. Methods included data extraction and conventional content analysis. Stakeholders were involved in the development of final categories. Following screening, 61 studies reported in 63 articles were included. Most studies were cross-sectional (n = 24), cohort (n = 15) or qualitative (n = 9). Only three were randomised controlled trials. Three overarching categories represented the results: Timely identification of nutritional risk and subsequent regular monitoring of nutritional status, multi-component tailored interventions and the influence of the care-giving dyad on nutritional status. Many studies identify people living at home with dementia as a vulnerable group prone to malnutrition; however, a lack of interventions exists to address the increased risk. There is a lack of research exploring the role of home care providers and healthcare professionals in the provision of nutritional care. Further research is required to explore how the emotional aspect of the care-giving dyad influences nutritional care. © 2018 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.

Effects of dog-assisted intervention on quality of life in nursing home residents with dementia.

PubMed

Kårefjärd, Ann; Nordgren, Lena

2018-04-25

People with dementia often have a poor quality of life. Therefore, methods that can improve their life situation must be identified. One promising method is dog-assisted intervention. This study aimed to investigate the effects of dog-assisted intervention on quality of life in nursing home residents with dementia. A one-group, pretest post-test study design was used. Quality of life was measured using the QUALID in 59 nursing home residents prior to and after a dog-assisted intervention. Non-parametric tests were used to analyze the data, and effect sizes were calculated. The participants' total scores improved significantly between baseline and post-test 1 (p = < 0.001) and worsened significantly at post-test 2 (p = 0.025). The largest effect size was found for the item 'Verbalization suggests discomfort' (p = 0.001). The results indicate that dog-assisted interventions can have positive effects on quality of life in nursing home residents with moderate to severe dementia. The results contribute to a growing knowledge base about non-pharmacological methods that can be used in dementia care. Occupational therapists should consider dog-assisted interventions when planning activities that can reduce the illness burden and improve the quality of life for people with dementia.

Quality of Mental Health Care for Nursing Home Residents: A Literature Review

PubMed Central

Grabowski, David C.; Aschbrenner, Kelly A.; Rome, Vincent F.; Bartels, Stephen J.

2010-01-01

Because of the high proportion of nursing home residents with a mental illness other than dementia, the quality of mental health care in nursing homes is a major clinical and policy issue. The authors apply Donabedian's framework for assessing quality of care based on the triad of structure, process, and outcome-based measures in reviewing the literature on the quality of mental health care in nursing homes. Quality measures used within the literature include mental health consultations and hospitalizations, inappropriate use of medications, and mental health survey deficiencies. Factors related to the resident's welfare (nurse staffing), provider norms (locality), and financial factors (payer mix) were associated with the quality of mental health care. Although future research is necessary, the extant literature suggests that persons with mental illness are frequently admitted to nursing homes and their care is often of poor quality and related to a series of resident and facility factors. PMID:20223943

Change in quality of life of people with dementia recently admitted to long-term care facilities.

PubMed

Beerens, Hanneke C; Zwakhalen, Sandra M G; Verbeek, Hilde; Ruwaard, Dirk; Ambergen, Antonius W; Leino-Kilpi, Helena; Stephan, Astrid; Zabalegui, Adelaida; Soto, Maria; Saks, Kai; Bökberg, Christina; Sutcliffe, Caroline L; Hamers, Jan P H

2015-06-01

To assess which factors are associated with change in quality of life of people with dementia who have recently been admitted to long-term care facilities. Many people with dementia will be admitted to long-term care facilities at some point during their disease. It is currently unknown which factors are associated with improvement and/or deterioration of quality of life immediately following admission. An observational and longitudinal survey. Data on 343 people with dementia who have been recently admitted to long-term care facilities across eight European countries were collected between November 2010-April 2012. Quality of life was assessed by people with dementia and their proxies using the 'Quality of Life-Alzheimer's Disease scale'. Explanatory variables included cognitive status, comorbidities, activities of daily living, depressive symptoms and neuropsychiatric symptoms. Descriptive and multilevel regression analyses were performed. Better cognitive abilities at baseline were associated with a decrease in self-reported quality of life. Greater dependency and more depressive symptoms at baseline were associated with declined proxy-reported quality of life. Furthermore, an increased dependency and an increase of depressive symptoms between baseline and follow-up were associated with a decreased proxy-reported quality of life. On an individual level, three groups were identified, namely people whose quality of life: (1) decreased; (2) stayed the same; and (3) increased. Cognitive functioning, functional rehabilitation and treatment of depressive symptoms should receive special attention. However, quality of life of people with dementia does not necessarily decrease after institutionalization. © 2014 John Wiley & Sons Ltd.

The Appropriate Use of Neuroimaging in the Diagnostic Work-Up of Dementia

PubMed Central

Bermingham, SL

2014-01-01

Background Structural brain imaging is often performed to establish the underlying causes of dementia. However, recommendations differ as to who should receive neuroimaging and whether computed tomography (CT) or magnetic resonance imaging (MRI) should be used. Objectives This study aimed to determine the cost-effectiveness in Ontario of offering structural imaging to all patients with mild to moderate dementia compared with offering it selectively according to guidelines from the Canadian Consensus Conference on the Diagnosis and Treatment of Dementia (CCC). We compared the cost-effectiveness of CT and MRI as first-line strategies. Methods We performed a systematic literature search (2000 to 2013) to identify cost-effectiveness studies of clinical prediction rules and structural imaging modalities. Studies were assessed for quality and applicability to Ontario. We also developed a model to evaluate the cost-effectiveness of clinical guidelines (image all versus according to CCC) and modalities (CT versus MRI). Transition probabilities, utilities, and costs were obtained from published literature or expert opinion. Results were expressed in terms of costs and quality adjusted life years (QALYs). Results No relevant cost-effectiveness analyses were identified in the published literature. According to the base-case results of our model, the most effective and cost-effective strategy is to image patients who meet CCC criteria with CT and to follow-up with MRI for suspected cases of space-occupying lesions (SOL). However, the results were sensitive to the specificity of MRI for detecting vascular causes of dementia. At a specificity of 64%, the most cost-effective strategy is CCC followed by MRI. Limitations Studies used to estimate diagnostic accuracy were limited by a lack of a gold standard test for establishing the cause of dementia. The model does not include costs to patients and their families, nor does it account for patient preferences about diagnostic information. Conclusions Given the relative prevalence of vascular dementia and SOLs, and the improvement in QALYs associated with treatment, the strategy with the greatest combined sensitivity (CCC with CT followed by MRI for patients with SOLs) results in the greatest number of QALYs and is the least costly. Due to limitations in the clinical data and challenges in the interpretation of this evidence, the model should be considered a framework for assessing uncertainty in the evidence base rather than providing definitive answers to the research questions. Plain Language Summary There is wide debate about whether or not brain scans should routinely be used to assess patients with mild to moderate dementia. Proponents say that imaging is important to detect or rule out possible underlying causes of dementia, such as silent strokes and tumours. Opponents call for a more selective approach, considering the need for clinical judgement and the cost of the technology. Using data from published research, a model was developed to study the cost-effectiveness of different approaches to brain imaging for a hypothetical group of patients with dementia. The model compared 2 strategies: imaging all patients and imaging selectively based on clinical practice guidelines from the Canadian Consensus Conference on the Diagnosis and Treatment of Dementia (CCC). It also compared 2 types of technology: computed tomography (CT) and magnetic resonance imaging (MRI). The results of the model depended on the accuracy of CT and MRI in diagnosing dementia caused by vascular disease. Unfortunately, because there is no “gold standard” approach to diagnosing dementia, interpreting the published research is challenging. Based on current evidence, in which diagnostic strategies are assessed using a mix of methods, the model showed that the most effective and least costly strategy is to image selectively according to the CCC guidelines, using CT first and then MRI as a follow-up for patients suspected of having space-occupying lesions such as tumours. However, if we assumed that MRI plus clinical assessment is the gold standard, then imaging all patients with MRI is the most cost-effective strategy, despite the higher cost of this technology. The model did not take into account the value that physicians, patients, and families place on having diagnostic information, even if effective treatment does not yet exist. The model was not able to answer the specific research questions with confidence, but it provides a framework for identifying areas where more research is needed to support decision-making in the diagnosis of dementia. PMID:24592297

Influencers on quality of life as reported by people living with dementia in long-term care: a descriptive exploratory approach.

PubMed

Moyle, Wendy; Fetherstonhaugh, Deirdre; Greben, Melissa; Beattie, Elizabeth

2015-04-23

Over half of the residents in long-term care have a diagnosis of dementia. Maintaining quality of life is important, as there is no cure for dementia. Quality of life may be used as a benchmark for caregiving, and can help to enhance respect for the person with dementia and to improve care provision. The purpose of this study was to describe quality of life as reported by people living with dementia in long-term care in terms of the influencers of, as well as the strategies needed, to improve quality of life. A descriptive exploratory approach. A subsample of twelve residents across two Australian states from a national quantitative study on quality of life was interviewed. Data were analysed thematically from a realist perspective. The approach to the thematic analysis was inductive and data-driven. Three themes emerged in relation to influencers and strategies related to quality of life: (a) maintaining independence, (b) having something to do, and (c) the importance of social interaction. The findings highlight the importance of understanding individual resident needs and consideration of the complexity of living in large group living situations, in particular in regard to resident decision-making.

[Critical reflections concerning euthanasia for persons with dementia].

PubMed

De Lepeleire, J; Beyen, A; Burin, M; Fabri, R; Ghijsebrechts, G; Lisaerde, J; Temmerman, B; Van den Eynden, B; Van den Noortgate, N

2010-01-01

In the public debate on the extension of euthanasia for people with dementia, in addition to ethical considerations and arguments, other issues have to be kept in mind. The diagnosis of dementia is difficult and the clinical picture is very fluctuating. The assessment and especially the operationalization of legal capacity and the use of advance directives are complex problems. The discussion should be conducted against the backdrop of a cultural framework in which the interpretation and development of palliative care is crucial. The development of a framework like advance care planning creates opportunities. The question remains whether the legal issues can be clarified and whether a legal approach generates solutions for the problems described.

The relationship between the quality of the built environment and the quality of life of people with dementia in residential care.

PubMed

Fleming, Richard; Goodenough, Belinda; Low, Lee-Fay; Chenoweth, Lynn; Brodaty, Henry

2016-07-01

While there is considerable evidence on the impact of specific design features on problems associated with dementia, the link between the quality of the built environment and quality of life of people with dementia is largely unexplored. This study explored the environmental and personal characteristics that are associated with quality of life in people with dementia living in residential aged care. Data were obtained from 275 residents of 35 aged care homes and analysed using linear regression. The quality of the built environment was significantly associated with the quality of life of the resident measured by global self-report. Environmental ratings were not associated with proxy or detailed self-report ratings. Higher quality of life is associated with buildings that facilitate engagement with a variety of activities both inside and outside, are familiar, provide a variety of private and community spaces and the amenities and opportunities to take part in domestic activities. © The Author(s) 2014.

Reviewing the definition of crisis in dementia care

PubMed Central

2013-01-01

Background Crisis is a term frequently used in dementia care lacking a standardized definition. This article systematically reviews existing definitions of crisis in dementia care literature to create a standardized definition that can be utilized for research, policy and clinical practice. Methods We systematically searched for articles containing definitions of crisis in the context of dementia care. We created an operational framework of crisis based on retrieved definitions. Recommendations to address crisis situations were reviewed and classified according to care settings. Results Abstracts and titles of 1,113 articles, screened from PubMed and EMBASE, were narrowed down to 27 articles. After review, crisis in dementia was defined as a process where a stressor causes an imbalance requiring an immediate decision to be made which leads to a desired outcome and therefore a resolution of the crisis. If the crisis is not resolved, the cycle continues. Recommendations for resolving crisis involving persons with dementia and their caregivers include awareness therapy after diagnosis and increased contact with general practitioners, case manager consultations, caregiver support and education. Furthermore, nursing home staff should be attuned to the environmental, physical and psychological needs of persons with dementia. Conclusions This is the first article to review the definition of crisis in the context of dementia care. A review of the literature indicated that the definition of a crisis is idiosyncratic. Therefore, it is difficult to prevent or plan for all crises. We used an operational framework to compile types of crisis stressors and recommendations from the crisis literature based on three different perspectives; the person with the dementia, the caregiver and the healthcare providers. PMID:23374634

Reviewing the definition of crisis in dementia care.

PubMed

MacNeil Vroomen, Janet; Bosmans, Judith E; van Hout, Hein P J; de Rooij, Sophia E

2013-02-01

Crisis is a term frequently used in dementia care lacking a standardized definition. This article systematically reviews existing definitions of crisis in dementia care literature to create a standardized definition that can be utilized for research, policy and clinical practice. We systematically searched for articles containing definitions of crisis in the context of dementia care. We created an operational framework of crisis based on retrieved definitions. Recommendations to address crisis situations were reviewed and classified according to care settings. Abstracts and titles of 1,113 articles, screened from PubMed and EMBASE, were narrowed down to 27 articles. After review, crisis in dementia was defined as a process where a stressor causes an imbalance requiring an immediate decision to be made which leads to a desired outcome and therefore a resolution of the crisis. If the crisis is not resolved, the cycle continues. Recommendations for resolving crisis involving persons with dementia and their caregivers include awareness therapy after diagnosis and increased contact with general practitioners, case manager consultations, caregiver support and education. Furthermore, nursing home staff should be attuned to the environmental, physical and psychological needs of persons with dementia. This is the first article to review the definition of crisis in the context of dementia care. A review of the literature indicated that the definition of a crisis is idiosyncratic. Therefore, it is difficult to prevent or plan for all crises. We used an operational framework to compile types of crisis stressors and recommendations from the crisis literature based on three different perspectives; the person with the dementia, the caregiver and the healthcare providers.

Financial errors in dementia: Testing a neuroeconomic conceptual framework

PubMed Central

Chiong, Winston; Hsu, Ming; Wudka, Danny; Miller, Bruce L.; Rosen, Howard J.

2013-01-01

Financial errors by patients with dementia can have devastating personal and family consequences. We developed and evaluated a neuroeconomic conceptual framework for understanding financial errors across different dementia syndromes, using a systematic, retrospective, blinded chart review of demographically-balanced cohorts of patients with Alzheimer’s disease (AD, n=100) and behavioral variant frontotemporal dementia (bvFTD, n=50). Reviewers recorded specific reports of financial errors according to a conceptual framework identifying patient cognitive and affective characteristics, and contextual influences, conferring susceptibility to each error. Specific financial errors were reported for 49% of AD and 70% of bvFTD patients (p = 0.012). AD patients were more likely than bvFTD patients to make amnestic errors (p< 0.001), while bvFTD patients were more likely to spend excessively (p = 0.004) and to exhibit other behaviors consistent with diminished sensitivity to losses and other negative outcomes (p< 0.001). Exploratory factor analysis identified a social/affective vulnerability factor associated with errors in bvFTD, and a cognitive vulnerability factor associated with errors in AD. Our findings highlight the frequency and functional importance of financial errors as symptoms of AD and bvFTD. A conceptual model derived from neuroeconomic literature identifies factors that influence vulnerability to different types of financial error in different dementia syndromes, with implications for early diagnosis and subsequent risk prevention. PMID:23550884

Dementia beyond 2025: Knowledge and uncertainties.

PubMed

Kenigsberg, Paul-Ariel; Aquino, Jean-Pierre; Bérard, Alain; Gzil, Fabrice; Andrieu, Sandrine; Banerjee, Sube; Brémond, François; Buée, Luc; Cohen-Mansfield, Jiska; Mangialasche, Francesca; Platel, Hervé; Salmon, Eric; Robert, Philippe

2016-01-01

Given that there may well be no significant advances in drug development before 2025, prevention of dementia-Alzheimer's disease through the management of vascular and lifestyle-related risk factors may be a more realistic goal than treatment. Level of education and cognitive reserve assessment in neuropsychological testing deserve attention, as well as cultural, social, and economic aspects of caregiving. Assistive technologies for dementia care remain complex. Serious games are emerging as virtual educational and pleasurable tools, designed for individual and cooperative skill building. Public policies are likely to pursue improving awareness and understanding of dementia; providing good quality early diagnosis and intervention for all; improving quality of care from diagnosis to the end of life, using clinical and economic end points; delivering dementia strategies quicker, with an impact on more people. Dementia should remain presented as a stand-alone concept, distinct from frailty or loss of autonomy. The basic science of sensory impairment and social engagement in people with dementia needs to be developed. E-learning and serious games programs may enhance public and professional education. Faced with funding shortage, new professional dynamics and economic models may emerge through coordinated, flexible research networks. Psychosocial research could be viewed as an investment in quality of care, rather than an academic achievement in a few centers of excellence. This would help provide a competitive advantage to the best operators. Stemming from care needs, a logical, systems approach to dementia care environment through organizational, architectural, and psychosocial interventions may be developed, to help reduce symptoms in people with dementia and enhance quality of life. Dementia-friendly environments, culture, and domesticity are key factors for such interventions. © The Author(s) 2015.

Dementia and representative democracy: Exploring challenges and implications for democratic citizenship.

PubMed

Sonnicksen, Jared

2016-05-01

Despite growing recognition of the rights of people with dementia for full citizenship, issues related to democracy, whether from theoretical or practical perspectives, remain neglected. Especially since discourses on dementia have expanded to this rights-based approach, it is imperative to begin to examine the meanings and practices of democracy within a context of dementia. Accordingly, the purpose of this article is to assess implications of dementia in the context of democracy. Rather than surveying the variety of democratic concepts, it will focus the analytical framework on representative democracy and then outline several challenges to and for representative democracy and citizens with dementia. The intention is to begin to identify paths for ensuring representation, inclusion and participation for those who have dementia. © The Author(s) 2016.

Development and evaluation of the content validity, practicability and feasibility of the Innovative dementia-oriented Assessment system for challenging behaviour in residents with dementia.

PubMed

Halek, Margareta; Holle, Daniela; Bartholomeyczik, Sabine

2017-08-14

One of the most difficult issues for care staff is the manifestation of challenging behaviour among residents with dementia. The first step in managing this type of behaviour is analysing its triggers. A structured assessment instrument can facilitate this process and may improve carers' management of the situation. This paper describes the development of an instrument designed for this purpose and an evaluation of its content validity and its feasibility and practicability in nursing homes. The development process and evaluation of the content validity were based on Lynn's methodology (1998). A literature review (steps 1 + 2) provided the theoretical framework for the instrument and for item formation. Ten experts (step 3) evaluated the first version of the instrument (the Innovative dementia-oriented Assessment (IdA®)) regarding its relevance, clarity, meaningfulness and completeness; content validity indices at the scale-level (S-CVI) and item-level (I-CVI) were calculated. Health care workers (step 4) evaluated the second version in a workshop. Finally, the instrument was introduced to 17 units in 11 nursing homes in a field study (step 5), and 60 care staff members assessed its practicability and feasibility. The IdA® used the need-driven dementia-compromised behaviour (NDB) model as a theoretical framework. The literature review and expert-based panel supported the content validity of the IdA®. At the item level, 77% of the ratings had a CVI greater than or equal to 0.78. The majority of the question-ratings (84%, n = 154) and answer-ratings (69%, n = 122) showed valid results, with none below 0.50. The health care workers confirmed the understandability, completeness and plausibility of the IdA®. Steps 3 and 4 led to further item clarification. The carers in the study considered the instrument helpful for reflecting challenging behaviour and beneficial for the care of residents with dementia. Negative ratings referred to the time required and the lack of effect on residents´ behaviour. There was strong evidence supporting the content validity of the IdA®. Despite the substantial length and time requirement, the instrument was considered helpful for analysing challenging behaviour. Thus, further research on the psychometric qualities, implementation aspects and effectiveness of the IdA® in understanding challenging behaviour is needed.

A disease management program for families of persons in Hong Kong with dementia.

PubMed

Chien, Wai Tong; Lee, Yuet Ming

2008-04-01

This study tested the effectiveness of a dementia care management program for Chinese families of relatives with dementia on caregivers' and patients' health outcomes over a 12-month follow-up period. The dementia care management program is an educational and supportive group for caregivers that lasts six months. A controlled trial was conducted with 88 primary caregivers of persons with dementia in two dementia care centers in Hong Kong. Family members were assigned randomly to either the dementia care program or standard care. The two groups were compared for patients' symptoms and institutionalization rates and caregivers' quality of life, burden, and social support upon recruitment and six and 12 months after group assignment. Over the 12-month follow-up period, patients with family members in the dementia care program showed significantly greater improvements in symptoms and institutionalization rates and their caregivers reported significantly greater improvements in quality of life and burden compared with the control group. The findings provide evidence that the dementia care management program can improve the psychosocial functioning of Chinese persons with dementia and their caregivers.

Systematic review of recent dementia practice guidelines.

PubMed

Ngo, Jennifer; Holroyd-Leduc, Jayna M

2015-01-01

dementia is a highly prevalent acquired cognitive disorder that interferes with activities of daily living, relationships and quality of life. Recognition and effective management strategies are necessary to provide comprehensive care for these patients and their families. High-quality clinical practice guidelines can improve the quality and consistency of care in all aspects of dementia diagnosis and management by clarifying interventions supported by sound evidence and by alerting clinicians to interventions without proven benefit. we aimed to offer a synthesis of existing practice recommendations for the diagnosis and management of dementia, based upon moderate-to-high quality dementia guidelines. we performed a systematic search in EMBASE and MEDLINE as well as the grey literature for guidelines produced between 2008 and 2013. thirty-nine retrieved practice guidelines were included for quality appraisal by the Appraisal of Guidelines Research and Evaluation II (AGREE-II) tool, performed by two independent reviewers. From the 12 moderate-to-high quality guidelines included, specific practice recommendations for the diagnosis and/or management of any aspect of dementia were extracted for comparison based upon the level of evidence and strength of recommendation. there was a general agreement between guidelines for many practice recommendations. However, direct comparisons between guidelines were challenging due to variations in grading schemes. © The Author 2014. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Effectiveness of a structured education reminiscence-based programme for staff on the quality of life of residents with dementia in long-stay units: a study protocol for a cluster randomised trial.

PubMed

O'Shea, Eamon; Devane, Declan; Murphy, Kathy; Cooney, Adeline; Casey, Dympna; Jordan, Fionnuala; Hunter, Andrew; Murphy, Edel

2011-02-14

Current projections indicate that there will be a significant increase in the number of people with dementia in Ireland, from approximately 40,000 at present to 100,000 by 2036. Psychosocial interventions, such as reminiscence, have the potential to improve the quality of life of people with dementia. However, while reminiscence is used widely in dementia care, its impact on the quality of life of people with dementia remains largely undocumented and there is a need for a robust and fair assessment of its overall effectiveness. The DementiA education programme incorporating REminiscence for Staff study will evaluate the effectiveness of a structured reminiscence-based education programme for care staff on the quality of life of residents with dementia in long-stay units. The study is a two-group, single-blind cluster randomised trial conducted in public and private long-stay residential settings in Ireland. Randomisation to control and intervention is at the level of the long-stay residential unit. Sample size calculations suggest that 18 residential units each containing 17 people with dementia are required for randomisation to control and intervention groups to achieve power of at least 80% with alpha levels of 0.05. Each resident in the intervention group is linked with a nurse and care assistant who have taken the structured reminiscence-based education programme. Participants in the control group will receive usual care. The primary outcome is quality of life of residents as measured by the Quality of Life-AD instrument. Secondary outcomes include agitation, depression and carer burden. Blinded outcome assessment is undertaken at baseline and at 18-22 weeks post-randomisation. Trials on reminiscence-based interventions for people with dementia have been scarce and the quality of the information arising from those that have been done has been undermined by methodological problems, particularly in relation to scale and scope. This trial is powered to deliver more credible and durable results. The trial may also convey process utility to a long-stay system in Ireland that has not been geared for education and training, especially in relation to dementia. The results of this trial are applicable to long-stay residential units in Ireland and internationally. Current Controlled Trials ISRCTN99651465.

Pain in dementia: prevalence and associated factors: protocol of a multidisciplinary study.

PubMed

van Kooten, Janine; Delwel, Suzanne; Binnekade, Tarik T; Smalbrugge, Martin; van der Wouden, Johannes C; Perez, Roberto S G M; Rhebergen, Didi; Zuurmond, Wouter W A; Stek, Max L; Lobbezoo, Frank; Hertogh, Cees M P M; Scherder, Erik J A

2015-03-21

Pain is a common problem in people with dementia, however the exact prevalence of pain in dementia subtypes, e.g. Alzheimer's Disease (AD), Vascular Dementia (VaD), Frontotemporal Dementia (FTD) and dementia with Lewy Bodies (DLB), is unknown, as is the relation between pain and the different subtypes of dementia. In this study, the prevalence of pain in people with dementia will be investigated per dementia subtype and the relationship between the various subtypes of dementia and the presence of specific types of pain (i.e. musculoskeletal pain, neuropathic pain and orofacial pain) will be examined. Secondly, associations between various types of pain, cognitive functioning, neuropsychiatric symptoms and quality of life in people with dementia will be examined. A third purpose is to study the value of the assessment of autonomic responses in assessing pain in people with dementia. Finally, the effect of feedback to the attending physician on the presence of pain, based on examination by investigators with backgrounds in neuropsychology, geriatric dentistry and elderly care medicine, will be evaluated. A cross-sectional, partially longitudinal observational study in 400 participants with dementia, aged 60 years and older. Participants will be recruited from an outpatient memory clinic and dementia special care units. All participants will be examined by an elderly care medicine trainee, a dentist with experience in geriatric dentistry, and a neuropsychologist. The primary outcome is presence of pain. Secondary outcomes will include oral health, autonomic responses to pain stimulus, vital sensibility and gnostic sensibility, musculoskeletal examination, cognitive functioning, neuropsychiatric symptoms, and quality of life. This study will help to enhance our knowledge regarding the prevalence of different types of pain in different dementia subtypes i.e. AD, VaD, FTD and DLB. This study also aims to contribute to a better understanding of oral health status in people with dementia, the use of autonomic responses in the assessment of pain in people with dementia and the relationships between pain and cognitive symptoms, neuropsychiatric symptoms and quality of life in people with various dementia subtypes and in different stages of the disease.

Quality of life in dementia patients: nursing home versus home care.

PubMed

Nikmat, Azlina Wati; Hawthorne, Graeme; Al-Mashoor, S Hassan

2011-12-01

Care management providing a high quality of life (QoL) is a crucial issue in dealing with increasing numbers of dementia patients. Although the transition from informal (home-based) care to formal (institutional) care is often a function of dementia stage, for those with early dementia there is currently no definitive evidence showing that informal or formal care provides a higher QoL, particularly where informal care is favored for local cultural reasons. This paper outlines the research protocol for a study comparing formal and informal care in Malaysia. It seeks to provide evidence regarding which is more appropriate and results in higher QoL in early dementia. This is a quasi-experimental study design involving 224 early dementia patients from both nursing home and community settings. Participants will be assessed for cognitive severity, QoL, needs, activities of daily living, depression and social isolation/connectedness by using the Mini-Mental State Examination (MMSE), Cognitive Impairment Scale - 4 items (CIS-4), EUROPE Health Interview Survey-Quality of Life (WHO8), Assessment of Quality of Life (AQoL8), Camberwell Assessment of Need for the Elderly - Short Version (CANE-S), Barthel Index (BI), Cornell Scale for Depression (CSDD), Geriatric Depression Scale - 15 items (GDS-15), and Friendship Scale (FS) respectively. This study aims to provide a better understanding of care needs in early dementia. Given population aging, the study findings will provide evidence assisting decision-making for policies aimed at reducing the burden of caregiving and preserving the QoL of dementia patients.

A review of conceptualisation of expressed emotion in caregivers of older adults with dementia.

PubMed

Li, Chao-Yin; Murray, MaryAnne

2015-02-01

To clarify the concept of 'expressed emotion' and its application to caregivers of older adults with dementia. Expressed emotion has been a useful construct for understanding the quality of family relationships affecting patients with mental illness and their caregivers. However, this concept has been developed without precisely defining 'expressed emotion' as it pertains to dementia patients. Clarity regarding expressed emotion will enable nurses to apply knowledge of expressed emotion and provide important information for the development of new clinical interventions for this specific population. Integrative review. A review of literature on expressed emotion by caregivers of older adults with dementia. The inclusion criteria were: (1) published in English or Chinese during 1970-2012; (2) included both research and theoretical review articles on expressed emotion in nursing and other disciplines such as psychology, psychiatry and sociology. Initially, 236 articles were screened, and finally, 32 articles were evaluated for this review. Emotional expression and expressed emotion were discussed to clarify the distinctions and address overlap between these two similar terms. In addition, expressed emotion was examined further from three different aspects: trait or state, social control and cross-cultural. Finally, the results of reviewed papers for expressed emotion on dementia patients were explored and synthesised. A conceptual definition and a theoretical framework for the concept of expressed emotion are urgently needed to further our understanding of this critical phenomenon. With increasing attention to caregiving for patients with dementia, including the concept of expressed emotion in the research of this field may accelerate understanding of the importance of the family dynamics in advanced ageing caregiving. The expressed emotion concept could guide much of current clinical practice and help professional nurses understand the family's experience and perspective on mental illness, especially regarding dementia within the family. © 2014 John Wiley & Sons Ltd.

A Visual Arts Education pedagogical approach for enhancing quality of life for persons with dementia (innovative practice).

PubMed

Tietyen, Ann C; Richards, Allan G

2017-01-01

A new and innovative pedagogical approach that administers hands-on visual arts activities to persons with dementia based on the field of Visual Arts Education is reported in this paper. The aims of this approach are to enhance cognition and improve quality of life. These aims were explored in a small qualitative study with eight individuals with moderate dementia, and the results are published as a thesis. In this paper, we summarize and report the results of this small qualitative study and expand upon the rationale for the Visual Arts Education pedagogical approach that has shown promise for enhancing cognitive processes and improving quality of life for persons with dementia.

Depression associated with dementia.

PubMed

Gutzmann, H; Qazi, A

2015-06-01

Depression and cognitive disorders, including dementia and mild cognitive impairment, are common disorders in old age. Depression is frequent in dementia, causing distress, reducing the quality of life, exacerbating cognitive and functional impairment and increasing caregiver stress. Even mild levels of depression can significantly add to the functional impairment of dementia patients and the severity of psychopathological and neurological impairments increases with increasing severity of depression. Depressive symptoms may be both a risk factor for, as well as a prodrome of dementia. Major depressive syndrome of Alzheimer's disease may be among the most common mood disorders of older adults. Treating depression is therefore a key clinical priority to improve the quality of life both of people with dementia as well as their carergivers. Nonpharmacological approaches and watchful waiting should be attempted first in patients who present with mild to moderate depression and dementia. In cases of severe depression or depression not able to be managed through nonpharmacological means, antidepressant therapy should be considered.

Communicating with patients who have advanced dementia: training nurse aide students.

PubMed

Beer, Laura E; Hutchinson, Susan R; Skala-Cordes, Kristine K

2012-01-01

The increase of dementia in older adults is changing how medical care is delivered. Recognizing symptoms of pain, managing behaviors, and providing quality of life for people who have advanced dementia requires a new skill set for caregivers. Researchers in this study targeted nurse aide students to test an educational module's effect on students' perceptions of dementia and their ability to care for patients with dementia. The results indicated the training was effective regarding nurse aides' understanding of residual cognitive abilities and need for meaningful contact among patients with advanced dementia; however, the training was not successful in terms of nurse aides' comfort level or perceived skills in working with this population of patients. The findings suggest a need to transform how caregivers are trained in communication techniques. Incorporating this training into nurse aide education has the potential to increase quality of life for people with dementia.

Quasi-experimental evaluation of a multifaceted intervention to improve quality of end-of-life care and quality of dying for patients with advanced dementia in long-term care institutions.

PubMed

Verreault, René; Arcand, Marcel; Misson, Lucie; Durand, Pierre J; Kroger, Edeltraut; Aubin, Michèle; Savoie, Maryse; Hadjistavropoulos, Thomas; Kaasalainen, Sharon; Bédard, Annick; Grégoire, Annie; Carmichael, Pierre-Hughes

2018-03-01

Improvement in the quality of end-of-life care for advanced dementia is increasingly recognized as a priority in palliative care. To evaluate the impact of a multidimensional intervention to improve quality of care and quality of dying in advanced dementia in long-term care facilities. Quasi-experimental study with the intervention taking place in two long-term care facilities versus usual care in two others over a 1-year period. The intervention had five components: (1) training program to physicians and nursing staff, (2) clinical monitoring of pain using an observational pain scale, (3) implementation of a regular mouth care routine, (4) early and systematic communication with families about end-of-life care issues with provision of an information booklet, and (5) involvement of a nurse facilitator to implement and monitor the intervention. Quality of care was assessed with the Family Perception of Care Scale. The Symptom Management for End-of-Life Care in Dementia and the Comfort Assessment in Dying scales were used to assess the quality of dying. A total of 193 residents with advanced dementia and their close family members were included (97 in the intervention group and 96 in the usual care group). The Family Perception of Care score was significantly higher in the intervention group than in the usual care group (157.3 vs 149.1; p = 0.04). The Comfort Assessment and Symptom Management scores were also significantly higher in the intervention group. Our multidimensional intervention in long-term care facilities for patients with terminal dementia resulted in improved quality of care and quality of dying when compared to usual care.

Dementia-specific training for nursing home staff : A systematic literature review.

PubMed

Riesch, Julia; Meyer, Lucy; Lehr, Bosco; Severin, Thomas

2017-08-22

For people with dementia high-quality care is vital, since at present dementia cannot be cured. In nursing homes this care is provided by the staff, who therefore require dementia-specific training enabling them to improve the quality of life for people with dementia. This article compares existing dementia-specific training for nursing home staff with recommendations, based on the current state of research, by the Alzheimer's Association and the National Institute for Health and Care Excellence, and discusses the outcome of this training. A systematic review of the literature was conducted to identify studies addressing dementia-specific training. The electronic databases Embase, Medline, Cochrane, CINAHL, PsychINFO, PSYNDEX, and ScienceDirect were searched. The training topics most commonly considered were person-centered care, communicating with people affected by dementia, and information about dementia. The roles of different social and healthcare professionals, palliative care of people with dementia, and understanding family dynamics are least featured in the training. There are training concepts which focus not only on the transfer of knowledge but also on practical exercises. In general, the recommended topics were addressed in dementia-specific training concepts, but there is potential for optimization. Further research is needed to identify success criteria in dementia-specific training and identify the successful combination of theoretical knowledge and practical exercise.

General practitioners' perceptions of the barriers and solutions to good-quality palliative care in dementia.

PubMed

Carter, Gillian; van der Steen, Jenny T; Galway, Karen; Brazil, Kevin

2015-04-16

The general practitioner (GP) is in a pivotal position to initiate and adapt care for their patients living with dementia. This study aimed to elicit GPs' perceptions of the potential barriers and solutions to the provision of good-quality palliative care in dementia in their practices. A postal survey of GPs across Northern Ireland was conducted with open-ended items soliciting for barriers in their practices and possible solutions; 40.6% (138/340) were returned completed. Barriers to palliative care in dementia were perceived to be a dementia knowledge deficit for healthcare staff and the public, a resource shortfall within the GP practice and community, poor team coordination alongside inappropriate dementia care provision, and disagreements from and within families. These findings have significant implications for educators and clinicians as enhanced dementia education and training were highlighted as a strong agenda for GPs with the suggestions of dementia awareness programmes for the public. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

Living better with dementia: strengths-based social work practice and dementia care.

PubMed

McGovern, Justine

2015-01-01

This article first argues that quality of life is possible despite the onset of dementia in late life. It also demonstrates how core concepts of social work practice, such as family systems theory, the strengths perspective, and use of self, can be applied to practice with dementia-affected persons. In addition, it provides practical suggestions for supporting care partners in nurturing "we-ness", focusing on what remains rather than was is lost, and remaining authentic. When strengths-based social work practice is integrated into dementia care protocols, wellbeing can increase. As a result, the more than 40 million persons worldwide who are affected by dementia do not have to resign themselves to the despair, devastation and inevitable demise of quality of life that dominate perception of the illness.

Ethical dilemmas concerning autonomy when persons with dementia wish to live at home: a qualitative, hermeneutic study.

PubMed

Smebye, Kari Lislerud; Kirkevold, Marit; Engedal, Knut

2016-01-19

Caring for people with dementia living in their own homes is a challenging care issue that raises ethical dilemmas of how to balance autonomy with their safety and well-being. The theoretical framework for this study consisted of the concepts of autonomy, beneficence, non-maleficence, paternalism and from the ethics of care. The aim of this study was to explore ethical dilemmas concerning autonomy that were identified when persons with dementia wished to live at home. This Norwegian study had a qualitative, hermeneutic design and was based on nine cases. Each case consisted of of a triad: the person with dementia, the family carer and the professional caregiver. Inclusion criteria for the persons with dementia were: (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2 i.e. dementia of moderate degree (4) able to communicate verbally and (5) expressed a wish to live at home. The family carers and professional caregivers registered in the patients' records were included in the study. An interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day care centre. By means of deductive analysis, autonomy-related ethical dilemmas were identified. The final interpretation was based on perspectives from the theoretical framework. The analysis revealed three main ethical dilemmas: When the autonomy of the person with dementia conflicted with (1) the family carer's and professional caregiver's need to prevent harm (non-maleficence) (2) the beneficence of family carers and professional caregivers (3) the autonomy of the family carer. In order to remain living in their own homes, people with dementia accepted their dependence on others in order to uphold their actual autonomy and live in accordance with their identified values. Paternalism could be justified in light of beneficence and non-maleficence and within an ethics of care.

Living with early-stage dementia: a review of qualitative studies.

PubMed

Steeman, Els; de Casterlé, Bernadette Dierckx; Godderis, Jan; Grypdonck, Mieke

2006-06-01

This paper presents a literature review whose aim was to provide better understanding of living with early-stage dementia. Even in the early stages, dementia may challenge quality of life. Research on early-stage dementia is mainly in the domain of biomedical aetiology and pathology, providing little understanding of what it means to live with dementia. Knowledge of the lived experience of having dementia is important in order to focus pro-active care towards enhancing quality of life. Qualitative research is fundamentally well suited to obtaining an insider's view of living with early-stage dementia. We performed a meta-synthesis of qualitative research findings. We searched MEDLINE, CINAHL, and PsycINFO and reviewed the papers cited in the references of pertinent articles, the references cited in a recently published book on the subjective experience of dementia, one thesis, and the journal Dementia. Thirty-three pertinent articles were identified, representing 28 separate studies and 21 different research samples. Findings were coded, grouped, compared and integrated. Living with dementia is described from the stage a person discovers the memory impairment, through the stage of being diagnosed with dementia, to that of the person's attempts to integrate the impairment into everyday life. Memory loss often threatens perceptions of security, autonomy and being a meaningful member of society. At early stages of memory loss, individuals use self-protecting and self-adjusting strategies to deal with perceived changes and threats. However, the memory impairment itself may make it difficult for an individual to deal with these changes, thereby causing frustration, uncertainty and fear. Our analysis supports the integration of proactive care into the diagnostic process, because even early-stage dementia may challenge quality of life. Moreover, this care should actively involve both the individual with dementia and their family so that both parties can adjust positively to living with dementia.

Individual Cognitive Stimulation Therapy for dementia (iCST): study protocol for a randomized controlled trial

PubMed Central

2012-01-01

Background Improving the quality of care for people with dementia and their carers has become a national priority in many countries. Cognitive Stimulation Therapy (CST) groups can be beneficial in improving cognition and quality of life for people with dementia. The aim of the current study is to develop and evaluate a home-based individual Cognitive Stimulation Therapy (iCST) programme for people with dementia which can be delivered by their family carer. Methods This multi-centre, pragmatic randomised controlled trial (RCT) will compare the effectiveness and cost-effectiveness of iCST for people with dementia with a treatment as usual control group. The intervention consists of iCST sessions delivered by a carer for 30 minutes, 3 times a week over 25 weeks. For people with dementia the primary outcome measures are cognition assessed by the ADAS-Cog, and quality of life assessed by QoL-AD. For carers, quality of life using the SF-12 is the primary outcome measure. Using a 5% significance level, comparison of 306 participants will yield 80% power to detect an effect size of 0.35 for cognition as measured by the ADAS-Cog, and quality of life as measured by the QoL-AD. Quality of life for the carer will be measured using the SF-12. The trial will include a cost-effectiveness analysis from a public sector perspective. Discussion The UK Department of Health has recently stressed that improving access to psychological therapies is a national priority, but many people with dementia are unable to access psychological interventions. The development of a home-based individual version of CST will provide an easy to use, widely available therapy package that will be evaluated for effectiveness and cost-effectiveness in a multi centre RCT. PMID:22998983

Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial.

PubMed Central

Orgeta, Vasiliki; Leung, Phuong; Yates, Lauren; Kang, Sujin; Hoare, Zoe; Henderson, Catherine; Whitaker, Chris; Burns, Alistair; Knapp, Martin; Leroi, Iracema; Moniz-Cook, Esme D; Pearson, Stephen; Simpson, Stephen; Spector, Aimee; Roberts, Steven; Russell, Ian T; de Waal, Hugo; Woods, Robert T; Orrell, Martin

2015-01-01

BACKGROUND Group cognitive stimulation therapy programmes can benefit cognition and quality of life for people with dementia. Evidence for home-based, carer-led cognitive stimulation interventions is limited. OBJECTIVES To evaluate the clinical effectiveness and cost-effectiveness of carer-delivered individual cognitive stimulation therapy (iCST) for people with dementia and their family carers, compared with treatment as usual (TAU). DESIGN A multicentre, single-blind, randomised controlled trial assessing clinical effectiveness and cost-effectiveness. Assessments were at baseline, 13 weeks and 26 weeks (primary end point). SETTING Participants were recruited through Memory Clinics and Community Mental Health Teams for older people. PARTICIPANTS A total of 356 caregiving dyads were recruited and 273 completed the trial. INTERVENTION iCST consisted of structured cognitive stimulation sessions for people with dementia, completed up to three times weekly over 25 weeks. Family carers were supported to deliver the sessions at home. MAIN OUTCOME MEASURES Primary outcomes for the person with dementia were cognition and quality of life. Secondary outcomes included behavioural and psychological symptoms, activities of daily living, depressive symptoms and relationship quality. The primary outcome for the family carers was mental/physical health (Short Form questionnaire-12 items). Health-related quality of life (European Quality of Life-5 Dimensions), mood symptoms, resilience and relationship quality comprised the secondary outcomes. Costs were estimated from health and social care and societal perspectives. RESULTS There were no differences in any of the primary outcomes for people with dementia between intervention and TAU [cognition: mean difference -0.55, 95% confidence interval (CI) -2.00 to 0.90; p-value = 0.45; self-reported quality of life: mean difference -0.02, 95% CI -1.22 to 0.82; p-value = 0.97 at the 6-month follow-up]. iCST did not improve mental/physical health for carers. People with dementia in the iCST group experienced better relationship quality with their carer, but there was no evidence that iCST improved their activities of daily living, depression or behavioural and psychological symptoms. iCST seemed to improve health-related quality of life for carers but did not benefit carers' resilience or their relationship quality with their relative. Carers conducting more sessions had fewer depressive symptoms. Qualitative data suggested that people with dementia and their carers experienced better communication owing to iCST. Adjusted mean costs were not significantly different between the groups. From the societal perspective, both health gains and cost savings were observed. CONCLUSIONS iCST did not improve cognition or quality of life for people with dementia, or carers' physical and mental health. Costs of the intervention were offset by some reductions in social care and other services. Although there was some evidence of improvement in terms of the caregiving relationship and carers' health-related quality of life, iCST does not appear to deliver clinical benefits for cognition and quality of life for people with dementia. Most people received fewer than the recommended number of iCST sessions. Further research is needed to ascertain the clinical effectiveness of carer-led cognitive stimulation interventions for people with dementia. TRIAL REGISTRATION Current Controlled Trials ISRCTN65945963. FUNDING This project was funded by the National Institute of Health Research (NIHR) Health Technology Assessment (HTA) programme and will be published in full in Health Technology Assessment; Vol. 19, No. 64. See the NIHR Journals Library website for further information. PMID:26292178

A feasibility study of dementia communication training based on the VERA framework for pre-registration nurses: Part II impact on student experience.

PubMed

Naughton, Corina; Beard, Chloe; Tzouvara, Vasiliki; Pegram, Anne; Verity, Rebecca; Eley, Rhiannon; Hingley, David

2018-04-01

People living with dementia have complex communication needs, especially during acute hospital admissions. The VERA framework (validation, emotion, reassurance, activity) was designed to promote person centred communication between student nurses and people living with dementia, but there is limited evaluation of its impact. To measure the impact of dementia communication training (based on VERA) plus older adult unit (OAU) placement on students' ability to recognise opportunities for person centred (PC) communication compared to OAU placement alone. A control pre-post-study design was used. Dementia communication training plus follow-up during OAU placement was delivered to 51 students (5 OAU, two hospitals) while 66 students (7 OAUs, five hospitals) acted as controls. The primary outcome was students' ability to recognise PC communication assessed using case vignettes. Data were collected using electronic survey and focus group interviews. Data analysis used independent non-parametric Mann-Whitney U test and thematic analysis. In total 52 students (response rate 40%) completed surveys at the end of placements (38 intervention, 14 control group students). In the intervention group, participants were significantly more likely to identify PC responses with a mean score of 10.5 (SD 3.0) compared with 7.5 (SD 3.0) in the control group (p = 0.006). In focus group interviews (n = 19 students), the main themes were connecting with patients, VERA in practice, communication challenges, and learning environment. VERA was described as a flexible approach that added to participants' communication toolkit. The learning environment, complexity of patients and organisational resources were important contextual factors. The VERA framework has potential as a foundation level dementia communication training intervention, but it requires more rigorous testing. Nursing can lead the way in developing and embedding evidence-based, interdisciplinary dementia communication training in preregistration curricula. Copyright © 2018 Elsevier Ltd. All rights reserved.

"Psychogeritechnology" in Japan: Exemplars from a super-aged society.

PubMed

Leroi, Iracema; Watanabe, Kentaro; Hird, Nick; Sugihara, Taro

2018-05-31

The burgeoning field of gerontechnology, which is the interdisciplinary field of applying technology to ageing issues, has focused primarily on "active ageing" and maintaining independence for older adults. To date, there has been less focus on people who develop dementia. Here, we argue for the field of gerontechnology to have a greater emphasis on clinical applications for dementia. This can be captured under the rubric of "psychogeritechnology," a term we have coined to describe the range of technology approaches to the prevention, prediction, screening, assessment, diagnosis, management, and monitoring of people at risk of, or living with, dementia. Using Japan as the world's leading "super-aged' nation as a paradigm, the purpose of this paper is to provide a narrative review of the use of innovative technology for the diagnosis, management and support of people at risk of, or living with, dementia. By following the "life course" of dementia, we will use clinical exemplars and case studies of psychogeritechnological applications from a Japanese context, specific to each stage of dementia, from the preclinical to the advanced stage. In the preclinical stage, the focus will be on prevention and early detection of degenerative cognitive-functional trajectories. In the early-stage of dementia, we will outline examples of screening, assessment, diagnosis, and clinical monitoring, as well as the use of technology to support independent living and autonomy. In the moderate stage, examples of safety monitoring systems, and assistive technology to foster independence, quality of life will be outlined. Finally, in the advanced stage of dementia, our focus will be on assistive technology in the care home setting, and the need to foster secure and efficient communication among care providers. We will discuss these applications in terms of the evolution of the "technological roadmap" for dementia, and the need for a theoretical underpinning for the field, a meaningful and flexible evaluation framework, and consideration of the "wider perspective" including safety-critical issues, ethical issues, and the relation to policy and health economics. Japan, as a rapidly ageing society, is on the forefront of developing technology to support people with dementia. The new field of psychogeritechnology must harness the potential of such developments, while furthering the methodology to implement and evaluate the changes. Copyright © 2018 John Wiley & Sons, Ltd.

From Research to Application: Supportive and Therapeutic Environments for People Living With Dementia.

PubMed

Calkins, Margaret P

2018-01-18

The evidence about the role the designed and built environment plays in supporting individuals living with dementia has been steadily mounting for almost 40 years. Beginning with the work of M. Powell Lawton at the Weiss Pavilion at the Philadelphia Geriatric Center, there are now dozens of researchers who are exploring how the environment can be either supportive and therapeutic, indeed even serving as a prosthetic for various changes in cognition, or be a barrier to independent functioning and high quality of life. Two recent literature reviews published on the impact of environmental factors and characteristics on individuals living with dementia clearly delineate evidence that the environment can have a therapeutic or a debilitating impact on individuals living with dementia. Rather than duplicate these excellent reviews, this article puts the knowledge gleaned from this research into the shifting context that is long-term care. This article begins with an exploration of the evolution of approaches to the design of spaces for individuals living with dementia from traditional or medical models, to special care units (SCUs), to person-centered care (PCC), which is the organizing theme of this supplemental issue. A novel, person-centered way of conceptualizing the domains of environmental systems is then presented and used as the framework for structuring recommendations and creating supportive and therapeutic environments for individuals living with dementia. Although there are distinct pathophysiological and behavioral manifestations of different forms of dementia, there is almost no evidence that suggests alternative environmental characteristics are better for one type of dementia over another. Thus, this article will refer to "individuals living with dementia" as opposed to Alzheimer's disease or other specific forms of dementia. Further, this article only addresses residential environments: homes in the community, independent and assisted living residences and nursing homes. It does not address other settings, such as hospitals or hospice, or work and public community spaces, such as stores. It is recognized that individuals living with dementia do spend time in all these spaces, and fortunately, there is growing interest in creating more dementia-friendly communities, but they will not be addressed in this article. Most of the research that has been done has focused on shared residential settings, so that will be the primary focus on this article. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Dementia-specific quality of life instruments and their appropriateness in shared-housing arrangements--a literature study.

PubMed

Gräske, Johannes; Fischer, Thomas; Kuhlmey, Adelheid; Wolf-Ostermann, Karin

2012-01-01

Shared-housing arrangements (SHA) in Germany are a specific type of housing arrangement that belongs to the global concept of small-scale living arrangements. This caring approach comprises characteristics of both home and institutional care for persons with dementia. To evaluate the impact of SHA on the quality of life (QoL) of residents, an appropriate setting- and dementia-specific QoL instrument is needed. This article aims to identify QoL instruments that relate to the core domains of SHA. After a comprehensive literature review, existing dementia-specific QoL instruments were evaluated to determine whether any have been specifically designed for or applied in SHA. Additionally, each domain of the instruments was matched with the core domains of SHA. None of the existing instruments was identified as having been developed for SHA. Matching of the instrument domains with the SHA core domains leads to the conclusion that Quality of Life-Alzheimer's Disease, Dementia Quality of Life, Alzheimer Disease-Related Quality of Life, and QUALIDEM are adequate instruments for measuring the dementia-specific QoL of persons living in SHA. For the first time, a basis has been created for valid QoL evaluations of residents with dementia living in SHA. The 4 identified instruments are considered applicable in SHA. Conducting a performance test and evaluating further attributes according to the Scientific Advisory Committee of the Medical Outcomes Trust (e.g., reliability and validity) will further elucidation of the appropriateness of the instruments for SHA. Copyright © 2012 Mosby, Inc. All rights reserved.

Interventions for confusion and dementia. 5: Changing cultures.

PubMed

Woodrow, P

Previous articles in this series (Vol 7(15): 891-94; Vol 7(17): 1018-20; Vol 7(19): 1145-49; Vol 7(20): 1247-50) have explored the promotion of quality of life for people with dementia and how this can be achieved through existing interventions. This final article moves from discussing specific interventions to cover wider issues around healthcare beliefs and values. A brief historical overview of dementia care is given, outlining the inherited structures and values. Much valuable work has been carried out by the Bradford Dementia Group, who has described changes in dementia care as moving from an 'old' to a 'new' culture. This 'new culture', offering a comprehensive person-centred approach to holistic care, is explored with reference to the work of Kitwood, who has done much to promote quality of life for people suffering from dementia.

Oral health and orofacial pain in older people with dementia: a systematic review with focus on dental hard tissues.

PubMed

Delwel, Suzanne; Binnekade, Tarik T; Perez, Roberto S G M; Hertogh, Cees M P M; Scherder, Erik J A; Lobbezoo, Frank

2017-01-01

The aim of this review was to provide a systematic overview including a quality assessment of studies about oral health and orofacial pain in older people with dementia, compared to older people without dementia. A systematic literature search was performed in PubMed, CINAHL, and the Cochrane Library. The following search terms were used: dementia and oral health or stomatognathic disease. The quality assessment of the included articles was performed using the Newcastle-Ottawa Scale (NOS). The search yielded 527 articles, of which 37 were included for the quality assessment and quantitative overview. The median NOS score of the included studies was 5, and the mean was 4.9 (SD 2.2). The heterogeneity between the studies was considered too large to perform a meta-analysis. An equivalent prevalence of orofacial pain, number of teeth present, decayed missing filled teeth index, edentulousness percentage, and denture use was found for both groups. However, the presence of caries and retained roots was higher in older people with dementia than in those without. Older people with dementia have worse oral health, with more retained roots and coronal and root caries, when compared to older people without dementia. Little research focused on orofacial pain in older people with dementia. The current state of oral health in older people with dementia could be improved with oral care education of caretakers and regular professional dental care.

Spousal caregivers and persons with dementia: Increasing participation in shared leisure activities among hospital-based dementia support program participants.

PubMed

DiLauro, Michelle; Pereira, Amanda; Carr, Jennifer; Chiu, Mary; Wesson, Virginia

2015-02-20

Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses' participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers' needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

Quality improvement in neurology: dementia management quality measures.

PubMed

Odenheimer, Germaine; Borson, Soo; Sanders, Amy E; Swain-Eng, Rebecca J; Kyomen, Helen H; Tierney, Samantha; Gitlin, Laura; Forciea, Mary Ann; Absher, John; Shega, Joseph; Johnson, Jerry

2014-03-01

Professional and advocacy organizations have long urged that dementia should be recognized and properly diagnosed. With the passage of the National Alzheimer's Project Act in 2011, an Advisory Council for Alzheimer's Research, Care, and Services was convened to advise the Department of Health and Human Services. In May 2012, the Council produced the first National Plan to address Alzheimer's disease, and prominent in its recommendations is a call for quality measures suitable for evaluating and tracking dementia care in clinical settings. Although other efforts have been made to set dementia care quality standards, such as those pioneered by RAND in its series Assessing Care of Vulnerable Elders (ACOVE), practitioners, healthcare systems, and insurers have not widely embraced implementation. This executive summary (full manuscript available at www.neurology.org) reports on a new measurement set for dementia management developed by an interdisciplinary Dementia Measures Work Group (DWG) representing the major national organizations and advocacy organizations concerned with the care of individuals with dementia. The American Academy of Neurology (AAN), the American Geriatrics Society, the American Medical Directors Association, the American Psychiatric Association, and the American Medical Association-convened Physician Consortium for Performance Improvement led this effort. The ACOVE measures and the measurement set described here apply to individuals whose dementia has already been identified and properly diagnosed. Although similar in concept to ACOVE, the DWG measurement set differs in several important ways; it includes all stages of dementia in a single measure set, calls for the use of functional staging in planning care, prompts the use of validated instruments in patient and caregiver assessment and intervention, highlights the relevance of using palliative care concepts to guide care before the advanced stages of illness, and provides evidence-based support for its recommendations and guidance on the selection of instruments useful in tracking patient-centered outcomes. It also specifies annual reassessment and updating of interventions and care plans for dementia-related problems that affect families and other caregivers as well as individuals with dementia. Here, a brief synopsis of why major reforms in healthcare design and delivery are needed to achieve substantive improvements in the quality of care is first provided, and then the final measures approved for publication, dissemination, and implementation are listed. © 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.

Knowledge gap regarding dementia care among nurses in Taiwanese acute care hospitals: A cross-sectional study.

PubMed

Lin, Pei-Chao; Hsieh, Mei-Hui; Chen, Meng-Chin; Yang, Yung-Mei; Lin, Li-Chan

2018-02-01

The quality of dementia care in hospitals is typically substandard. Staff members are underprepared for providing care to older people with dementia. The objective of the present study was to examine dementia care knowledge, attitude and behavior regarding self-education about dementia care among nurses working in different wards. This was a descriptive cross-sectional study. The present study was carried out from July 2013 to December 2013. In total, 387 nurses working in different wards were recruited from two hospitals in Taiwan by using convenience sampling. The nurses completed a self-report questionnaire on demographic data, experience and learning behavior, and attitude towards dementia care, and a 16-item questionnaire on dementia care knowledge. Descriptive and inferential statistics were used to analyze the status and differences in dementia care knowledge among nurse in different wards. The average dementia care knowledge score was 10.46 (SD 2.13), with a 66.5% mean accuracy among all nurses. Dementia care knowledge was significantly associated with age, nursing experience, possession of a registered nurse license, holding a bachelor's degree, work unit, training courses and learning behavior towards dementia care. The dementia care knowledge of the emergency room nurses was significantly lower than that of the psychiatric and neurology ward nurses. A significantly lower percentage of emergency room nurses underwent dementia care training and actively searched for information on dementia care, compared with the psychiatric and neurology ward nurses. Hospital nurses show a knowledge gap regarding dementia care, especially emergency room nurses. Providing dementia care training to hospital nurses, particularly emergency room nurses, is crucial for improving the quality of care for patients with dementia. Geriatr Gerontol Int 2018; 18: 276-285. © 2017 Japan Geriatrics Society.

Online Dementia Care Training for Healthcare Teams in Continuing and Long-Term Care Homes: A Viable Solution for Improving Quality of Care and Quality of Life for Residents

ERIC Educational Resources Information Center

MacDonald, Colla J.; Stodel, Emma J.; Casimiro, Lynn

2006-01-01

The purpose of this research was to design, develop, deliver, and evaluate an online dementia care program aimed at enabling healthcare teams deliver better service to residents with dementia in continuing (CC) and long-term care (LTC) facilities. A Community-Based Participatory Research (CBPR) orientation (Minkler & Wallerstein, 2003) was adopted…

Day care for dementia patients from a family caregiver's point of view: a questionnaire study on expected quality and predictors of utilisation - Part II.

PubMed

Donath, Carolin; Winkler, Angelika; Graessel, Elmar; Luttenberger, Katharina

2011-04-13

The investigation of the predictive variables for utilisation of day care and the views of family caregivers of dementia patients about quality of day care are the goals of this work. The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Participants were 404 family caregivers of dementia patients, of these 128 were users of day care, 269 were non-users and 7 gave no details about utilisation. Qualitative and quantitative data were analysed using qualitative content analysis and binary logistic regression analysis. The assessment of how helpful day care is for the individual care situation and the age of the family caregiver are significant predictors for utilisation of day care. Caregivers most frequently cited a programme of activities suited to the abilities of the dementia patients as quality criterion. In order to reduce the number of those caregivers who think they don't need day care compared with the number who really don't need it, caregivers should be transparently informed of the relevant advantages and quality principles of using day care. According to caregivers' wishes, the organisation of day care centres must include activities suited for dementia patients.

Individual music therapy for agitation in dementia: an exploratory randomized controlled trial.

PubMed

Ridder, Hanne Mette O; Stige, Brynjulf; Qvale, Liv Gunnhild; Gold, Christian

2013-01-01

Agitation in nursing home residents with dementia leads to increase in psychotropic medication, decrease in quality of life, and to patient distress and caregiver burden. Music therapy has previously been found effective in treatment of agitation in dementia care but studies have been methodologically insufficient. The aim of this study was to examine the effect of individual music therapy on agitation in persons with moderate/severe dementia living in nursing homes, and to explore its effect on psychotropic medication and quality of life. In a crossover trial, 42 participants with dementia were randomized to a sequence of six weeks of individual music therapy and six weeks of standard care. Outcome measures included agitation, quality of life and medication. Agitation disruptiveness increased during standard care and decreased during music therapy. The difference at -6.77 (95% CI (confidence interval): -12.71, -0.83) was significant (p = 0.027), with a medium effect size (0.50). The prescription of psychotropic medication increased significantly more often during standard care than during music therapy (p = 0.02). This study shows that six weeks of music therapy reduces agitation disruptiveness and prevents medication increases in people with dementia. The positive trends in relation to agitation frequency and quality of life call for further research with a larger sample.

Gender-dependence of substituted judgment on quality of life in patients with dementia

PubMed Central

2011-01-01

Background Substituted judgment asks the proxy to decide what the patient would have decided, had he or she been competent. It is unclear whether substituted judgment of the patient's quality of life can serve as a surrogate measure in patients with dementia. Methods 212 patients with dementia and their proxies were interviewed in their homes. Dementia syndrome was characterized with cognitive, non-cognitive and functional scales. Quality of life (QoL) was assessed with the QoL-AD. Results Substituted judgment of the patient's QoL was unrelated to dementia severity but also correlated with the proxie's own QoL (r = 0.356; p < 0.001). Gender-specific analysis reveals that for male proxies the most important variable is severity of patient's depression (r = -0.895; p = 0.001) while for female proxies it is the proxie's own QoL (r = 0.371; p < 0.001). Subjective burden correlates with the proxie's QoL in females (r = -0.282; p = 0.001) but not in males (r = -0.163, p = 0.161). Conclusion Substituted judgment of the patient's QoL does not correlate with dementia severity. Substituted judgment is subject to proxy-related variables in a gender-dependent fashion and therefore not suited to serve as an appropriate surrogate of the patients' quality of life. PMID:21961477

Quality care for persons experiencing dementia: the significance of relational ethics.

PubMed

Sellevold, Gerd S; Egede-Nissen, Veslemøy; Jakobsen, Rita; Sørlie, Venke

2013-05-01

The degree of success in creating quality care for people suffering from dementia is limited despite extensive research. This article describes healthcare providers' experience with the ethical challenges and possibilities in the relationship with patients suffering from dementia and its impact on quality care. The material is based on qualitative, in-depth individual narrative interviews with 12 professional healthcare providers from two different nursing homes. The transcribed interview texts were subjected to a phenomenological-hermeneutical interpretation. To provide quality care to patients with dementia, the healthcare providers emphasized the importance of sensing and understanding the patients' emotional and bodily expressions through sentient attentiveness and recognition of the patient as a person. They also described reciprocity of expressions in the relationship where the patient recognized them both as persons and healthcare providers. The analyses of the findings are, inter alia, discussed in light of Løgstrup's relational philosophy of ethics.

The effect of a disease management intervention on quality and outcomes of dementia care: a randomized, controlled trial.

PubMed

Vickrey, Barbara G; Mittman, Brian S; Connor, Karen I; Pearson, Marjorie L; Della Penna, Richard D; Ganiats, Theodore G; Demonte, Robert W; Chodosh, Joshua; Cui, Xinping; Vassar, Stefanie; Duan, Naihua; Lee, Martin

2006-11-21

Adherence to dementia guidelines is poor despite evidence that some guideline recommendations can improve symptoms and delay institutionalization of patients. To test the effectiveness of a dementia guideline-based disease management program on quality of care and outcomes for patients with dementia. Clinic-level, cluster randomized, controlled trial. 3 health care organizations collaborating with 3 community agencies in southern California. 18 primary care clinics and 408 patients with dementia age 65 years or older paired with 408 informal caregivers. Disease management program led by care managers and provided to 238 patient-caregiver pairs at 9 intervention clinics for more than 12 months. Adherence to 23 guideline recommendations (primary outcome) and receipt of community resources and patient and caregiver health and quality-of-care measures (secondary outcomes). The mean percentage of per-patient guideline recommendations to which care was adherent was significantly higher in the intervention group than in the usual care group (63.9% vs. 32.9%, respectively; adjusted difference, 30.1% [95% CI, 25.2% to 34.9%]; P < 0.001). Participants who received the intervention had higher care quality on 21 of 23 guidelines (P < or = 0.013 for all), and higher proportions received community agency assistance (P < or = 0.03) than those who received usual care. Patient health-related quality of life, overall quality of patient care, caregiving quality, social support, and level of unmet caregiving assistance needs were better for participants in the intervention group than for those in the usual care group (P < 0.05 for all). Caregiver health-related quality of life did not differ between the 2 groups. Participants were well-educated, were predominantly white, had a usual source of care, and were not institutionalized. Generalizability to other patients and geographic regions is unknown. Also, costs of a care management program under fee-for-service reimbursement may impede adoption. A dementia guideline-based disease management program led to substantial improvements in quality of care for patients with dementia. Current Controlled Trials identifier: ISRCTN72577751.

An Evaluation of an Online Postgraduate Dementia Studies Program

ERIC Educational Resources Information Center

Innes, Anthea; Kelly, Fiona; McCabe, Louise

2012-01-01

Education is key to addressing the challenges of providing high-quality care to the ever growing number of people with dementia. Although dementia education is required for multiple professions and disciplines working with people with dementia and their families and friends, there is a gap in knowledge of students' views about university-level…

A Systematic Review of Strategies to Foster Activity Engagement in Persons with Dementia

ERIC Educational Resources Information Center

Trahan, Maranda A.; Kuo, Julie; Carlson, Michelle C.; Gitlin, Laura N.

2014-01-01

Dementia is a growing public health issue. Activity, a positive therapeutic modality, has potential to enhance quality of life and reduce behavioral symptoms in persons with dementia--outcomes eluding pharmacological treatments. However, it is unclear how to effectively engage persons with dementia in activities for them to derive desired…

Enhanced Data Representation by Kernel Metric Learning for Dementia Diagnosis

PubMed Central

Cárdenas-Peña, David; Collazos-Huertas, Diego; Castellanos-Dominguez, German

2017-01-01

Alzheimer's disease (AD) is the kind of dementia that affects the most people around the world. Therefore, an early identification supporting effective treatments is required to increase the life quality of a wide number of patients. Recently, computer-aided diagnosis tools for dementia using Magnetic Resonance Imaging scans have been successfully proposed to discriminate between patients with AD, mild cognitive impairment, and healthy controls. Most of the attention has been given to the clinical data, provided by initiatives as the ADNI, supporting reliable researches on intervention, prevention, and treatments of AD. Therefore, there is a need for improving the performance of classification machines. In this paper, we propose a kernel framework for learning metrics that enhances conventional machines and supports the diagnosis of dementia. Our framework aims at building discriminative spaces through the maximization of center kernel alignment function, aiming at improving the discrimination of the three considered neurological classes. The proposed metric learning performance is evaluated on the widely-known ADNI database using three supervised classification machines (k-nn, SVM and NNs) for multi-class and bi-class scenarios from structural MRIs. Specifically, from ADNI collection 286 AD patients, 379 MCI patients and 231 healthy controls are used for development and validation of our proposed metric learning framework. For the experimental validation, we split the data into two subsets: 30% of subjects used like a blindfolded assessment and 70% employed for parameter tuning. Then, in the preprocessing stage, each structural MRI scan a total of 310 morphological measurements are automatically extracted from by FreeSurfer software package and concatenated to build an input feature matrix. Obtained test performance results, show that including a supervised metric learning improves the compared baseline classifiers in both scenarios. In the multi-class scenario, we achieve the best performance (accuracy 60.1%) for pretrained 1-layered NN, and we obtain measures over 90% in the average for HC vs. AD task. From the machine learning point of view, our proposal enhances the classifier performance by building spaces with a better class separability. From the clinical application, our enhancement results in a more balanced performance in each class than the compared approaches from the CADDementia challenge by increasing the sensitivity of pathological groups and the specificity of healthy controls. PMID:28798659

The use of socially assistive robots for dementia care.

PubMed

Huschilt, Julie; Clune, Laurie

2012-10-01

Innovative solutions for dementia care are required to address the steady rise in adults living with dementia, lack of adequate staffing to provide high-quality dementia care, and the need for family caregivers to provide care for their loved ones in the home. This article provides an overview of the use of socially assistive robots (SARs) to offer support as therapists, companions, and educators for people living with dementia. Social, ethical, and legal challenges associated with the use of robotic technology in patient care and implications for the use of SARs by nurses are discussed. These items considered, the authors conclude that SARs should be considered as a viable way to assist people living with dementia to maintain their highest possible level of independence, enhance their quality of life, and provide support to overburdened family caregivers. Further research is needed to evaluate the merits of this technological approach in the care of adults with dementia. Copyright 2012, SLACK Incorporated.

The long reach of Alzheimer's disease: patients, practice, and policy.

PubMed

Bynum, Julie P W

2014-04-01

The impact of Alzheimer's disease and related dementias reaches well beyond the health care needs of the person with dementia. As dementia inexorably progresses, the patient becomes increasingly dependent on others for basic daily care and routine tasks, a physically safe environment, and protection from exploitation or abuse. Addressing the diverse medical and social care needs of the burgeoning US population with Alzheimer's disease and related dementias requires the adoption of a broad-based policy framework and agenda that explicitly acknowledge the complex and unique needs of people with dementia and the impacts of dementia on caregivers and society at large. Public policies related to social service providers, agencies that provide appropriate housing, financial and legal services, and law enforcement must complement other policies focused on prevention and risk reduction, effective treatment development, and efficient health care delivery.

The costs of caring: medical costs of Alzheimer's disease and the managed care environment.

PubMed

Murman, D L

2001-01-01

This review summarizes the medical costs associated with Alzheimer's disease (AD) and related dementias, as well as the payers responsible for these medical costs in the US health care system. It is clear from this review that AD and related dementias are associated with substantial medical costs. The payers responsible for a majority of these costs are families of patients with AD and the US government through the Medicare and Medicaid programs. In an attempt to control expenditures, Medicare and Medicaid have turned to managed care principles and managed care organizations. The increase in "managed" dementia care gives rise to several potential problems for patients with AD, along with many opportunities for systematic improvement in the quality of dementia care. Evidence-based disease management programs provide the greatest opportunities for improving managed dementia care but will require the development of dementia-specific quality of care measures to evaluate and continually improve them.

Dementia-friendly communities: challenges and strategies for achieving stakeholder involvement.

PubMed

Heward, Michelle; Innes, Anthea; Cutler, Clare; Hambidge, Sarah

2017-05-01

Dementia-friendly communities (DFCs) are a UK policy initiative that aims to enable people with dementia to feel supported and included within their local community. Current approaches to DFC creation rely on stakeholder involvement, often requiring volunteer assistance. There is though a lack of evidence that examines the reality of achieving this. This paper critically assesses the challenges and strategies for achieving stakeholder involvement in DFCs. The evidence base is drawn from an inter-agency project funded by the National Health Service in the South of England where seven DFCs were developed by steering group partners and four part-time project workers (PWs). Data from the independent evaluation undertaken in the first year (2013-2014) of the project were analysed: 14 semi-structured interviews and a focus group examined PWs' experiences; while progress and key milestones are determined from monthly progress forms, good news stories, locality steering group minutes and press releases. Analysis was undertaken using a directed content analysis method, whereby data content for each locality was matched to the analytical framework that was drawn from Alzheimer's Society guidance. Challenges to achieving stakeholder involvement were identified as: establishing networks and including people representative of the local community; involving people affected by dementia; and gaining commitment from organisations. Strategies for achieving stakeholder involvement were recognised as: a sustainable approach; spreading the word; and sharing of ideas. By highlighting these challenges and the approaches that have been used within communities to overcome them, these findings form the foundation for the creation of DFC initiatives that will become embedded within communities. Stakeholder involvement is unpredictable and changeable; therefore, reliance on this approach questions the long-term sustainability of DFCs, and must be considered in future policies designed to enhance quality of life for people affected by dementia. © 2016 John Wiley & Sons Ltd.

A dementia care management intervention: which components improve quality?

PubMed

Chodosh, Joshua; Pearson, Marjorie L; Connor, Karen I; Vassar, Stefanie D; Kaisey, Marwa; Lee, Martin L; Vickrey, Barbara G

2012-02-01

To analyze whether types of providers and frequency of encounters are associated with higher quality of care within a coordinated dementia care management (CM) program for patients and caregivers. Secondary analysis of intervention-arm data from a dementia CM cluster-randomized trial, where intervention participants interacted with healthcare organization care managers (HOCMs), community agency care managers (CACMs), and/ or healthcare organization primary care providers (HOPCPs) over 18 months. Encounters of 238 patient/caregivers (dyads) with HOCMs, CACMs, and HOPCPs were abstracted from care management electronic records. The quality domains of assessment, treatment, education/support, and safety were measured from medical record abstractions and caregiver surveys. Mean percentages of met quality indicators associated with exposures to each provider type and frequency were analyzed using multivariable regression, adjusting for participant characteristics and baseline quality. As anticipated, for all 4 domains, the mean percentage of met dementia quality indicators was 15.5 to 47.2 percentage points higher for dyads with HOCM--only exposure than for dyads with none (all P < .008); not anticipated were higher mean percentages with increasing combinations of provider-type exposure-up to 73.7 percentage points higher for safety (95% confidence interval 65.2%-82.1%) with exposure to all 3 provider types compared with no exposure. While greater frequency of HOCM-dyad encounters was associated with higher quality (P < .04), this was not so for other provider types. HOCMs' interactions with dyads was essential for dementia care quality improvement. Additional coordinated interactions with primary care and community agency staff yielded even higher quality.

Stakeholders' perspective on issues and challenges associated with care and treatment of aging-related cognitive impairment disorders in Singapore.

PubMed

Setia, Monika; Islam, Amina M; Thompson, James P; Matchar, David B

2011-11-01

An expanding elderly population poses challenges for the provision of care and treatment for age-related physical and mental disorders. Cognitive impairment (CI)/dementia is one such mental disorder that is on the rise in Singapore and has concomitant implications for social and health systems. The objective of this study is to understand the perspectives of prominent stakeholders about current and future issues and challenges associated with CI/dementia among the elderly in Singapore. Using indepth interviews, this qualitative study obtained the views of multiple stakeholders on issues and challenges associated with CI/dementia in Singapore. The 30 individuals interviewed as part of the study included clinicians, policy-makers, researchers, community workers, administrators, and caregivers. Using a framework approach, interview texts were indexed into domains and issues by utilizing NVivo 9.0 software. The stakeholders expressed concerns related to multiple domains of the CI/dementia care system: attitude and awareness, economics, education, family caregiving, inputs to care system, living arrangements, prevention, screening and diagnosis, and treatment and management of care. Within each domain, multiple issues and challenges were identified by respondents. The study identifies a complex set of inter-related issues and challenges that are associated with the care and treatment of people with CI/dementia. The results suggest that CI and dementia profoundly affect patients, families, and communities and that the issues related to the two disorders are truly system-wide. These findings lay the foundation for utilization of a systems approach to studying CI/dementia and provide an analytic framework for future research on complex health care issues.

UK quality statements on end of life care in dementia: a systematic review of research evidence.

PubMed

Candy, Bridget; Elliott, Margaret; Moore, Kirsten; Vickerstaff, Victoria; Sampson, Elizabeth; Jones, Louise

2015-10-19

Globally, the number of people who die with dementia is increasing. The importance of a palliative approach in the care of people with dementia is recognised and there are national polices to enhance current care. In the UK implementation of these polices is promoted by the National Institute for Health and Care Excellence (NICE) Dementia Quality Standards (QS). Since publication of the QS new care interventions have been developed. To explore critically the current international research evidence on effect available to inform NICE Dementia QS relevant to end of life (EOL) care. We used systematic review methods to seek the research evidence for three statements within the Dementia QS. These are those that recommend: (1) a case management approach, (2) discussing and consideration of making a statement about future care (SFC) and (3) a palliative care assessment (PCA). We included evaluative studies of relevant interventions that used a comparative design, such as trials and cohort studies, and measured EOL care outcomes for persons dying with moderate to severe dementia. Our primary outcome of interest was whether the intervention led to a measurable impact on wellbeing for the person with dementia and their family. We assessed included studies for quality using a scale by Higginson and colleagues (2002) for assessment of quality of studies in palliative care, and two authors undertook key review processes. Data sources included Cinahl, Embase, and PsychINFO from 2001 to August 2014. Our search strategy included free text and medical subject headings relevant to population and recommended care. We found seven studies evaluating a care intervention; four assessed SFC, three PCA. None assessed case management. Studies were of weak design; all used retrospective data and relied on others for precise record keeping and for accurate recall of events. There was limited overlap in outcome measurements. Overall reported benefits were mixed. Quality statements relevant to EOL care are useful to advance practice however they have a limited evidence base. High quality empirical work is needed to establish that the recommendations in these statements are best practice.

Development of a new assessment scale for measuring interaction during staff-assisted transfer of residents in dementia special care units.

PubMed

Thunborg, Charlotta; von Heideken Wågert, Petra; Götell, Eva; Ivarsson, Ann-Britt; Söderlund, Anne

2015-02-10

Mobility problems and cognitive deficits related to transferring or moving persons suffering from dementia are associated with dependency. Physical assistance provided by staff is an important component of residents' maintenance of mobility in dementia care facilities. Unfortunately, hands-on assistance during transfers is also a source of confusion in persons with dementia, as well as a source of strain in the caregiver. The bidirectional effect of actions in a dementia care dyad involved in transfer is complicated to evaluate. This study aimed to develop an assessment scale for measuring actions related to transferring persons with dementia by dementia care dyads. This study was performed in four phases and guided by the framework of the biopsychosocial model and the approach presented by Social Cognitive Theory. These frameworks provided a starting point for understanding reciprocal effects in dyadic interaction. The four phases were 1) a literature review identifying existing assessment scales; 2) analyses of video-recorded transfer of persons with dementia for further generation of items, 3) computing the item content validity index of the 93 proposed items by 15 experts; and 4) expert opinion on the response scale and feasibility testing of the new assessment scale by video observation of the transfer situations. The development process resulted in a 17-item scale with a seven-point response scale. The scale consists of two sections. One section is related to transfer-related actions (e.g., capability of communication, motor skills performance, and cognitive functioning) of the person with dementia. The other section addresses the caregivers' facilitative actions (e.g., preparedness of transfer aids, interactional skills, and means of communication and interaction). The literature review and video recordings provided ideas for the item pool. Expert opinion decreased the number of items by relevance ratings and qualitative feedback. No further development of items was performed after feasibility testing of the scale. To enable assessment of transfer-related actions in dementia care dyads, our new scale shows potential for bridging the gap in this area. Results from this study could provide health care professionals working in dementia care facilities with a useful tool for assessing transfer-related actions.

A comprehensive approach to psychometric assessment of instruments used in dementia educational interventions for health professionals: a cross-sectional study.

PubMed

Wang, Yao; Xiao, Lily Dongxia; He, Guo-Ping

2015-02-01

Suboptimal care for people with dementia in hospital settings has been reported and is attributed to the lack of knowledge and inadequate attitudes in dementia care among health professionals. Educational interventions have been widely used to improve care outcomes; however, Chinese-language instruments used in dementia educational interventions for health professionals are lacking. The aims of this study were to select, translate and evaluate instruments used in dementia educational interventions for Chinese health professionals in acute-care hospitals. A cross-sectional study design was used. A modified stratified random sampling was used to recruit 442 participants from different levels of hospitals in Changsha, China. Dementia care competence was used as a framework for the selection and evaluation of Alzheimer's Disease Knowledge Scale and Dementia Care Attitudes Scale for health professionals in the study. These two scales were translated into Chinese using forward and back translation method. Content validity, test-retest reliability and internal consistency were assessed. Construct validity was tested using exploratory factor analysis. Known-group validity was established by comparing scores of Alzheimer's Disease Knowledge Scale and Dementia Care Attitudes Scale in two sub-groups. A person-centred care scale was utilised as a gold standard to establish concurrent validity of these two scales. Results demonstrated acceptable content validity, internal consistency, test-retest reliability and concurrent validity. Exploratory factor analysis presented a single-factor structure of the Chinese Alzheimer's Disease Knowledge Scale and a two-factor structure of the Chinese Dementia Care Attitudes Scale, supporting the conceptual dimensions of the original scales. The Chinese Alzheimer's Disease Knowledge Scale and Chinese Dementia Care Attitudes Scale demonstrated known-group validity evidenced by significantly higher scores identified from the sub-group with a longer work experience compared to those in the sub-group with less work experience. The use of dementia care competence as a framework to inform the selection and evaluation of instruments used in dementia educational interventions for health professionals has wide applicability in other areas. The results support that Chinese Alzheimer's Disease Knowledge Scale and Chinese Dementia Care Attitudes Scale are reliable and valid instruments for health professionals to use in acute-care settings. Copyright © 2014 Elsevier Ltd. All rights reserved.

Ethical issues in caring for patients with dementia.

PubMed

Hughes, Julian; Common, Jill

2015-08-05

This article discusses issues that might count as 'ethical' in the care of people with dementia and some of the dilemmas that occur. Ethical theories, such as virtue ethics, deontology and consequentialism are discussed, and ethical approaches that can be useful are outlined. Thinking about matters case-by-case is another approach, one that forms the first component of the Nuffield Council's ethical framework for dementia care, which is described. Case examples are provided, raising issues of autonomy, diagnosis, restraint and withholding treatment. The notion of personhood and the need to understand the person with dementia as broadly as possible are emphasised. Recommendations for nursing practice are included.

Individual music therapy for agitation in dementia: an exploratory randomized controlled trial

PubMed Central

Stige, Brynjulf; Qvale, Liv Gunnhild; Gold, Christian

2013-01-01

Objectives: Agitation in nursing home residents with dementia leads to increase in psychotropic medication, decrease in quality of life, and to patient distress and caregiver burden. Music therapy has previously been found effective in treatment of agitation in dementia care but studies have been methodologically insufficient. The aim of this study was to examine the effect of individual music therapy on agitation in persons with moderate/severe dementia living in nursing homes, and to explore its effect on psychotropic medication and quality of life. Method: In a crossover trial, 42 participants with dementia were randomized to a sequence of six weeks of individual music therapy and six weeks of standard care. Outcome measures included agitation, quality of life and medication. Results: Agitation disruptiveness increased during standard care and decreased during music therapy. The difference at −6.77 (95% CI (confidence interval): −12.71, −0.83) was significant (p = 0.027), with a medium effect size (0.50). The prescription of psychotropic medication increased significantly more often during standard care than during music therapy (p = 0.02). Conclusion: This study shows that six weeks of music therapy reduces agitation disruptiveness and prevents medication increases in people with dementia. The positive trends in relation to agitation frequency and quality of life call for further research with a larger sample. PMID:23621805

Cognitive syndromes after the first stroke.

PubMed

Salihović, Denisa; Smajlović, Dževdet; Mijajlović, Milija; Zoletić, Emina; Ibrahimagić, Omer Ć

2018-05-19

The aim of this study is to determine impairments of certain cognitive functions in certain vascular cognitive syndromes and to identify predictors of dementia. One-year prospective study included 275 patients, who were hospitalized at the Department of Neurology Tuzla and therefore fulfilled certain criteria. Patients were divided into following subgroups of vascular cognitive impairment (VCI): dementia of strategic infarct (DSI), cortical dementia (CD), sub cortical dementia (SCD), hemorrhagic dementia (HD), and patients without dementia. Each of the patients underwent the clinical examination and scoring with appropriate measurement scales. Some of the types of VCI were verified in 190 (69%) patients, and the most common was SCD (58%). There was statistically significant connection between the level of intelligence and occurrence of VCI in patients after stroke (p < 0.001). We found significant connection between occurrence of dementia and impairment in narrative memory, numerical memory, visual perceptive, and visual constructive functions in patients with dementia compared with non-demented (p = 0.0001). The executive functions were statistically impaired in patients with CD (p = 0.004) and SCD (p < 0.001). Patients without dementia have significantly better quality of life than the demented ones (p < 0.0001). The algorithm "tree of decision" can help us in the prediction of dementia based on the impairment of certain cognitive functions. Vascular cognitive syndromes are common after stroke. Some of the cognitive functions are significantly impaired in patients with dementia. Impairment of the certain cognitive functions can help in predicting the onset of dementia. Patients without dementia have better quality of life.

Predicting Desire for Institutional Placement among Racially Diverse Dementia Family Caregivers: The Role of Quality of Care

ERIC Educational Resources Information Center

Sun, Fei; Durkin, Daniel W.; Hilgeman, Michelle M.; Harris, Grant; Gaugler, Joseph E.; Wardian, Jana; Allen, Rebecca S.; Burgio, Louis D.

2013-01-01

Purpose: Literature on institutionalization of patients with dementia has not considered the role of caregivers' quality of care, which encompasses caregivers' exemplary care (EC) behaviors and caregivers' potentially harmful behaviors (PHBs) toward care recipients. This study sought to understand the role of quality of care in mediating between…

End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation.

PubMed

Goodman, Claire; Froggatt, Katherine; Amador, Sarah; Mathie, Elspeth; Mayrhofer, Andrea

2015-09-17

There has been an increase in research on improving end of life (EoL) care for older people with dementia in care homes. Findings consistently demonstrate improvements in practitioner confidence and knowledge, but comparisons are either with usual care or not made. This paper draws on findings from three studies to develop a framework for understanding the essential dimensions of end of life care delivery in long-term care settings for people with dementia. The data from three studies on EoL care in care homes: (i) EVIDEM EoL, (ii) EPOCH, and (iii) TTT EoL were used to inform the development of the framework. All used mixed method designs and two had an intervention designed to improve how care home staff provided end of life care. The EVIDEM EoL and EPOCH studies tracked the care of older people in care homes over a period of 12 months. The TTT study collected resource use data of care home residents for three months, and surveyed decedents' notes for ten months, Across the three studies, 29 care homes, 528 residents, 205 care home staff, and 44 visiting health care professionals participated. Analysis of showed that end of life interventions for people with dementia were characterised by uncertainty in three key areas; what treatment is the 'right' treatment, who should do what and when, and in which setting EoL care should be delivered and by whom? These uncertainties are conceptualised as Treatment uncertainty, Relational uncertainty and Service uncertainty. This paper proposes an emergent framework to inform the development and evaluation of EoL care interventions in care homes. For people with dementia living and dying in care homes, EoL interventions need to provide strategies that can accommodate or "hold" the inevitable and often unresolvable uncertainties of providing and receiving care in these settings.

A meta-analysis of Chinese herbal medicines for vascular dementia.

PubMed

Qin, Xiude; Liu, Yu; Wu, Yanqing; Wang, Shuo; Wang, Dandan; Zhu, Jinqiang; Ye, Qiaofeng; Mou, Wei; Kang, Liyuan

2013-06-25

To investigate the efficacy and safety of Chinese herbal medicines in the treatment of patients with vascular dementia. We retrieved publications from Cochrane Library (2004 to July 2011), PubMed (1966 to July 2011), the Chinese Science and Technique Journals Database (1977 to July 2011), the China National Knowledge Infrastructure (1979 to July 2011), Google Scholar (July 2011), and the Chinese Biomedical Database (1977 to July 2011) using the key words "Chinese medicine OR Chinese herbal medicine" and "vascular dementia OR mild cognition impair OR multi-infarct dementia OR small-vessel dementia OR strategic infarct dementia OR hypoperfusion dementia OR hemorrhagic dementia OR hereditary vascular dementia". Randomized controlled trials comparing Chinese herbal medicines with placebo/western medicine in the treatment of patients with vascular dementia were included. Diagnostic standards included Diagnostic and Statistical Manual of Mental Disorders-IV, and National Institute of Neurological Disorders and Stroke and Association Internationale pour la Recherché et l'Enseignement en Neurosciences. Two participants independently conducted literature screening, quality evaluation and data extraction. The quality of each trial was assessed according to the Cochrane Reviewers' Handbook 5.0. Effective rate, Mini-Mental State Examination scores, Hasegawa Dementia Scale scores, and incidence of adverse reactions. We identified 1 143 articles discussing the effects of Chinese medicine on vascular dementia. Thirty-one of these were included in the analysis. These studies involved a total of 2 868 participants (1 605 patients took Chinese medicine decoctions (treatment group); 1 263 patients took western medicine or placebo). The results of our meta-analysis revealed that Chinese herbal remedies in the treatment group were more efficacious than the control intervention (relative risk (RR) = 1.27; 95% confidence interval (CI): 1.18-1.38, P < 0.01). Mini-Mental State Examination scores were higher in patients taking Chinese herbal medicines than in those in the control group (weighted mean difference (WMD) = 2.83; 95%CI: 2.55-3.12, P < 0.01). Patients in the treatment group showed better disease amelioration than those in the control group (Hasegawa Dementia Scale scores; WMD = 2.41, 95%CI: 1.48-3.34, P < 0.01). There were also considerably fewer adverse reactions among those in the treatment group compared with those in the control group (RR = 0.20, 95%CI: 0.08-0.47, P < 0.01). Chinese herbal medicine appears to be safer and more effective than control measures in the treatment of vascular dementia. However, the included trials were generally low in quality. More well-designed, high-quality trials are needed to provide better evidence for the assessment of the efficacy and safety of Chinese medicines for vascular dementia.

Dementia Care at End of Life: Current Approaches.

PubMed

Bartley, Mairead M; Suarez, Laura; Shafi, Reem M A; Baruth, Joshua M; Benarroch, Amanda J M; Lapid, Maria I

2018-06-23

Dementia is a progressive and life-limiting condition that can be described in three stages: early, middle, and late. This article reviews current literature on late-stage dementia. Survival times may vary across dementia subtypes. Yet, the overall trajectory is characterized by progressive decline until death. Ideally, as people with dementia approach the end of life, care should focus on comfort, dignity, and quality of life. However, barriers prevent optimal end-of-life care in the final stages of dementia. Improved and earlier advanced care planning for persons with dementia and their caregivers can help delineate goals of care and prepare for the inevitable complications of end-stage dementia. This allows for timely access to palliative and hospice care, which ultimately improves dementia end-of-life care.

Development of a Self-Report Checklist to Assess Dementia Care by Nurses in Hospital Settings.

PubMed

Ikegami, Chikako; Ota, Katsumasa

2018-03-01

Nurses working at general hospitals face difficulties in providing dementia care. The current study examined aged care nurses' dementia care practices in the hospital setting and developed a dementia care checklist that nurses can use to review their own care practice. A self-administered questionnaire was given to 676 participants; responses were collected from 595 participants. Exploratory factor analysis identified six factors (e.g., patient understanding prompted by concern and interest for the patient, respect for patients' voluntary behavior, early detection of abnormalities) among the questionnaire's 28 items. This analysis provided a framework for the checklist and verified that it had satisfactory internal consistency and construct validity. The frequency of care practices varied with participants' knowledge of dementia care requirements, satisfaction with their own dementia care practice, confidence in their ability to judge patients' physical condition, and cooperation with colleagues. This checklist might improve dementia care in hospital settings. [Res Gerontol Nurs. 2018; 11(2):91-102.]. © 2018 Ikegami and Ota.

Preparatory planning framework for Created Out of Mind: Shaping perceptions of dementia through art and science

PubMed Central

Brotherhood, Emilie; Ball, Philip; Camic, Paul M; Evans, Caroline; Fox, Nick; Murphy, Charlie; Walsh, Fergus; West, Julian; Windle, Gill; Billiald, Sarah; Firth, Nicholas; Harding, Emma; Harrison, Charles; Holloway, Catherine; Howard, Susanna; McKee-Jackson, Roberta; Jones, Esther; Junghaus, Janette; Martin, Harriet; Nolan, Kailey; Rollins, Bridie; Shapiro, Lillian; Shapiro, Lionel; Twigg, Jane; van Leeuwen, Janneke; Walton, Jill; Warren, Jason; Wray, Selina; Yong, Keir; Zeilig, Hannah; Crutch, Sebastian

2017-01-01

Created Out of Mind is an interdisciplinary project, comprised of individuals from arts, social sciences, music, biomedical sciences, humanities and operational disciplines. Collaboratively we are working to shape perceptions of dementias through the arts and sciences, from a position within the Wellcome Collection. The Collection is a public building, above objects and archives, with a porous relationship between research, museum artefacts, and the public.  This pre-planning framework will act as an introduction to Created Out of Mind. The framework explains the rationale and aims of the project, outlines our focus for the project, and explores a number of challenges we have encountered by virtue of working in this way. PMID:29387805

International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans.

PubMed

Watchman, Karen; Janicki, Matthew P; Splaine, Michael; Larsen, Frode K; Gomiero, Tiziano; Lucchino, Ronald

2017-06-01

The World Health Organization (WHO) has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down's syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. An International Summit on Intellectual Disability and Dementia, held in Scotland, reviewed the inclusion of ID in national plans and recommended that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes, and greater advocacy is required from national organizations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

Dementia ascertainment using existing data in UK longitudinal and cohort studies: a systematic review of methodology.

PubMed

Sibbett, Ruth A; Russ, Tom C; Deary, Ian J; Starr, John M

2017-07-03

Studies investigating the risk factors for or causation of dementia must consider subjects prior to disease onset. To overcome the limitations of prospective studies and self-reported recall of information, the use of existing data is key. This review provides a narrative account of dementia ascertainment methods using sources of existing data. The literature search was performed using: MEDLINE, EMBASE, PsychInfo and Web of Science. Included articles reported a UK-based study of dementia in which cases were ascertained using existing data. Existing data included that which was routinely collected and that which was collected for previous research. After removing duplicates, abstracts were screened and the remaining articles were included for full-text review. A quality tool was used to evaluate the description of the ascertainment methodology. Of the 3545 abstracts screened, 360 articles were selected for full-text review. 47 articles were included for final consideration. Data sources for ascertainment included: death records, national datasets, research databases and hospital records among others. 36 articles used existing data alone for ascertainment, of which 27 used only a single data source. The most frequently used source was a research database. Quality scores ranged from 7/16 to 16/16. Quality scores were better for articles with dementia ascertainment as an outcome. Some papers performed validation studies of dementia ascertainment and most indicated that observed rates of dementia were lower than expected. We identified a lack of consistency in dementia ascertainment methodology using existing data. With no data source identified as a "gold-standard", we suggest the use of multiple sources. Where possible, studies should access records with evidence to confirm the diagnosis. Studies should also calculate the dementia ascertainment rate for the population being studied to enable a comparison with an expected rate.

Assessing Care of Vulnerable Elders – Alzheimer's Disease: A Pilot Study of a Practice Redesign Intervention to Improve the Quality of Dementia Care

PubMed Central

Reuben, David B.; Roth, Carol P.; Frank, Janet C.; Hirsch, Susan H.; Katz, Diane; McCreath, Heather; Younger, Jon; Murawski, Marta; Edgerly, Elizabeth; Maher, Joanne; Maslow, Katie; Wenger, Neil S.

2013-01-01

Objectives To determine whether a practice redesign intervention coupled with referral to local Alzheimer's Association chapters can improve the quality of dementia care. Design Pre-post intervention Setting Two community-based physician practices Participants Five physicians in each practice and their patients age 75 and older with dementia Intervention Adaptation of the Assessing Care of Vulnerable Elders (ACOVE)-2 intervention (screening, efficient collection of clinical data, medical record prompts, patient education/empowerment materials, and physician decision support/education). In addition, physicians faxed referral forms to local Alzheimer's Association chapters who assessed patients, provided counseling and education, and faxed information back to the physicians. Measurements Audits of pre- (5 per physician) and post- (10 per physician) intervention medical records using ACOVE-3 quality indicators for dementia to measure the quality of care provided. Results Based on 47 pre- and 90 post-intervention audits, the percentage of quality indicators satisfied rose from 38% to 46% with significant differences on quality indicators measuring the assessment of functional status (20% versus 51%), discussion of risk/benefits of antipsychotics (32% versus 100%), and counseling caregivers (2% versus 30%). Referral of patients to Alzheimer's Association chapters increased from 0 to 17%. Referred patients had higher quality scores (65% versus 41%) and better counseling about driving (50% versus 14%), caregiver counseling (100% versus 15%) and surrogate decision-maker specification (75% versus 44%). However, some quality indicators related to cognitive assessment and examination did not improve. Conclusions This pilot study suggests that a practice-based intervention can increase referral to AA chapters and improve quality of dementia care. PMID:20374405

Desire to Institutionalize a Relative with Dementia: Quality of Premorbid Relationship and Caregiver Gender

ERIC Educational Resources Information Center

Winter, Laraine; Gitlin, Laura N.; Dennis, Marie

2011-01-01

The quality of the relationship between individuals with dementia and their family caregivers has an impact on important clinical outcomes for both. It is unclear, however, how quality of relationship (QoR) affects caregivers' desire to place their relative in a nursing home. We examined the association of QoR with caregivers' desire to…

Responsiveness of the quality of life in late-stage dementia scale to psychotropic drug treatment in late-stage dementia.

PubMed

Martin-Cook, Kristin; Hynan, Linda S; Rice-Koch, Kathleen; Svetlik, Doris A; Weiner, Myron F

2005-01-01

We report on the responsiveness of a previously validated quality-of-life scale, the Quality of Life in Late-Stage Dementia scale (QUALID), as an outcome measure in a clinical trial of two psychotropic medications. Secondary analyses were conducted comparing outcome measures used in a randomized double-blind trial of two antipsychotics (olanzapine and risperidone) for the treatment of dementia-related behavioral symptoms. The QUALID was completed for 31 of the patients in addition to several measures of behavior-related dementia symptoms including the Neuropsychiatric Inventory, the Withdrawn Behavior subscale of the Multidimensional Observation Scale for Elderly Subjects, the Mini-Mental State Examination, and the Clinical Global Impression. Measures of safety and adverse effects included the Simpson-Angus Scale and records of specific adverse events. A significant positive relationship was found between QUALID score and improvement in behavioral symptoms, and a negative association was found with adverse medication effects. The QUALID was sensitive to both the treatment effects and the adverse effects of medication in this sample of patients.

Collaborative care management reduces disparities in dementia care quality for caregivers with less education.

PubMed

Brown, Arleen F; Vassar, Stefanie D; Connor, Karen I; Vickrey, Barbara G

2013-02-01

To examine educational gradients in dementia care and whether the effect of a dementia collaborative care management intervention varied according to the educational attainment of the informal caregiver. Analysis of data from a cluster-randomized controlled trial. Eighteen clinics in three healthcare organizations in southern California. Dyads of Medicare recipients aged 65 and older with a diagnosis of dementia and an eligible caregiver. Collaborative care management for dementia. Caregiver educational attainment, adherence to four dimensions of guideline-recommended processes of dementia care (assessment, treatment, education and support, and safety) before and after the intervention, and the adjusted intervention effect (IE) for each dimension stratified according to caregiver education. Each IE was estimated by subtracting the difference between pre- and postintervention scores for the usual care participants from the difference between pre- and postintervention scores in the intervention participants. At baseline, caregivers with lower educational attainment provided poorer quality of dementia care for the Treatment and Education dimensions than those with more education, but less-educated caregivers had significantly more improvement after the intervention on the assessment, treatment, and safety dimensions. The IEs for those who had not graduated from high school were 44.4 for the assessment dimension, 36.9 for the treatment dimension, and 52.7 for the safety dimension, versus 29.5, 15.7, and 40.9 respectively, for college graduates (P < .001 for all three). Collaborative care management was associated with smaller disparities in dementia care quality between caregivers with lower educational attainment and those with more education. © 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.

A review of couple-centred interventions in dementia: Exploring the what and why - Part A.

PubMed

Bielsten, Therése; Hellström, Ingrid

2017-01-01

Introduction Symptoms of dementia bring about challenges to couples' relationships. Relationship-focused support has been highlighted to be of significant importance for sustained relationship quality and to reduce the negative impact of dementia on the dyadic relationship. This review aimed to explore the 'what' and 'why' of interventions aimed at couples where one partner has a diagnosis of dementia and in which the couple jointly participate. Method Searches were performed in Academic Search Premier, CINAHL, PsycINFO, PubMed, Scopus and Web of Science from January 2000 to August 2017. Results Six studies were included. Objectives for the person with dementia was related to cognitive function and for the care partner the objectives were related to well-being. The majority of the outcomes were mirrored by the objectives and focused on cognitive function for people with dementia and depression and relationship quality for care partners. Our findings indicate that people with dementia should be included in the assessment of the relationship in order to gain an overall picture of relationship dynamics and to increase tailored support in couple-centred interventions. Conclusions The findings of this review indicate that joint interventions for people with dementia and care partners are lacking a genuine dyadic approach where both partners' views of their relationship are valued. In order to identify targets for support and to use the appropriate outcome measures, the quality of the relationship should be recognised and taken into account. Moreover, there is a lack of a salutogenic approach in couple-centred interventions in which couples' strengths and resources can be identified and supported.

[The participation of patients with dementia in individualised intervention plan meetings: the impact on their well-being and the quality of life].

PubMed

Villar, Feliciano; Vila-Miravent, Josep; Celdrán, Montserrat; Fernández, Elena

2013-01-01

An individualised intervention plan (IIP) offers a new paradigm in the care of the elderly with dementia, with the aim of increasing their quality of life through personalisation, respect for their freedom, and their participation in the decisions that affect their lives. To evaluate the impact of the residential home patient with dementia and their quality of care when they take part in the interdisciplinary meeting in which their care plan is decided. A total of 52 elderly patients with dementia took part in the study. They were distributed into two groups, one experimental (37 residents) and another control (15 residents). The Dementia Care Mapping (DCM) tool was used to assess the well-being and quality of care of the residents. This tool was used twice, before and after the intervention. The well-being of the resident, evaluated using the DCM, was similar before and after the intervention in the experimental group. No differences were observed either on comparing the control and experimental groups. However, some indicators of carer behaviour were different before and after the intervention, and when the control and experimental group were compared. The inclusion of elderly persons with dementia in their IIP meeting had a positive effect in the interaction of the staff with the residents, but not on the well-being of the resident. Copyright © 2012 SEGG. Published by Elsevier Espana. All rights reserved.

How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures

PubMed Central

Robinson, Jonah; Robalino, Shannon; Finch, Tracy; McColl, Elaine

2018-01-01

Background In the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves. However, there is lack of consensus on the most suitable instrument(s) for undertaking this. Methods A systematic review of the literature using COSMIN methodology. Searching of electronic databases (Medline, PsycINFO, CINAHL and Web of Science), reference list and citation searching of key papers was undertaken. COSMIN methodology was used to simultaneously extract data from and assess methodological quality of included studies, and make a recommendation for the instrument with the most high quality evidence for its measurement properties. Results Ten instruments were suitable for inclusion in this review. The Carer well-being and support questionnaire (CWS) has the best quality evidence for the greatest number of measurement of properties. The Caregiver Well-Being Scale is also worthy of consideration. There is not presently a measure which could be recommended for use in economic evaluations, however the Impact of Alzheimer’s Disease on the Caregiver questionnaire (IADCQ) could potentially be used following further investigation of its measurement properties in a representative population. Conclusion The CWS is the most appropriate instrument to recommend for the assessment of quality of life in informal carers of people with dementia at present. All instruments included in this review would benefit from more rigorous evaluation of their measurement properties. PMID:29538433

The Unforgettables: a chorus for people with dementia with their family members and friends.

PubMed

Mittelman, Mary Sherman; Papayannopoulou, Panayiota Maria

2018-01-29

Summary/Abstract Our experience evaluating a museum program for people with dementia together with their family members demonstrated benefits for all participants. We hypothesized that participation in a chorus would also have positive effects, giving them an opportunity to share a stimulating and social activity that could improve their quality of life. We inaugurated a chorus for people with dementia and their family caregivers in 2011, which rehearses and performs regularly. Each person with dementia must be accompanied by a friend or family member and must commit to attending all rehearsals and the concert that ensues. A pilot study included a structured assessment, take home questionnaires and focus groups. Analyses of pre-post scores were conducted; effect size was quantified using Cohen's d. Results showed that quality of life and communication with the other member of the dyad improved (Effect size: Cohen's d between 0.32 and 0.72) for people with dementia; quality of life, social support, communication and self-esteem improved (d between 0.29 and 0.68) for caregivers. Most participants stated that benefits included belonging to a group, having a normal activity together and learning new skills. Participants attended rehearsals in spite of harsh weather conditions. The chorus has been rehearsing and performing together for more than 6 years and contributing to its costs. Results of this pilot study suggest that people in the early to middle stage of dementia and their family members and friends can enjoy and learn from rehearsing and performing in concerts that also engage the wider community. It is essential to conduct additional larger studies of the benefits of participating in a chorus, which may include improved quality of life and social support for all, and reduced cognitive decline among people with dementia.

Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health.

PubMed

Janssen, Eveline P C J; de Vugt, Marjolein; Köhler, Sebastian; Wolfs, Claire; Kerpershoek, Liselot; Handels, Ron L H; Orrell, Martin; Woods, Bob; Jelley, Hannah; Stephan, Astrid; Bieber, Anja; Meyer, Gabriele; Engedal, Knut; Selbaek, Geir; Wimo, Anders; Irving, Kate; Hopper, Louise; Gonçalves-Pereira, Manuel; Portolani, Elisa; Zanetti, Orazio; Verhey, Frans R

2017-01-01

To identify caregiver profiles of persons with mild to moderate dementia and to investigate differences between identified caregiver profiles, using baseline data of the international prospective cohort study Actifcare. A latent class analysis was used to discover different caregiver profiles based on disease related characteristics of 453 persons with dementia and their 453 informal caregivers. These profiles were compared with regard to quality of life (CarerQoL score), depressive symptoms (HADS-D score) and perseverance time. A 5-class model was identified, with the best Bayesian Information Criterion value, significant likelihood ratio test (p < 0.001), high entropy score (0.88) and substantive interpretability. The classes could be differentiated on two axes: (i) caregivers' age, relationship with persons with dementia, severity of dementia, and (ii) tendency towards stress and difficulty adapting to stress. Classes showed significant differences with all dependent variables, and were labelled 'older low strain', 'older intermediate strain', 'older high strain', 'younger low strain' and 'younger high strain'. Differences exist between types of caregivers that explain variability in quality of life, depressive symptoms and perseverance time. Our findings may give direction for tailored interventions for caregivers of persons with dementia, which may improve social health and reduce health care costs.

Quality of Dying in Nursing Home Residents Dying with Dementia: Does Advanced Care Planning Matter? A Nationwide Postmortem Study

PubMed Central

Vandervoort, An; Houttekier, Dirk; Vander Stichele, Robert; van der Steen, Jenny T.; Van den Block, Lieve

2014-01-01

Background Advance care planning is considered a central component of good quality palliative care and especially relevant for people who lose the capacity to make decisions at the end of life, which is the case for many nursing home residents with dementia. We set out to investigate to what extent (1) advance care planning in the form of written advance patient directives and verbal communication with patient and/or relatives about future care and (2) the existence of written advance general practitioner orders are related to the quality of dying of nursing home residents with dementia. Methods Cross-sectional study of deaths (2010) using random cluster-sampling. Representative sample of nursing homes in Flanders, Belgium. Deaths of residents with dementia in a three-month period were reported; for each the nurse most involved in care, GP and closest relative completed structured questionnaires. Findings We identified 101 deaths of residents with dementia in 69 nursing homes (58% response rate). A written advance patient directive was present for 17.5%, GP-orders for 56.7%. Controlling for socio-demographic/clinical characteristics in multivariate regression analyses, chances of having a higher mean rating of emotional well-being (less fear and anxiety) on the Comfort Assessment in Dying with Dementia scale were three times higher with a written advance patient directive and more specifically when having a do-not-resuscitate order (AOR 3.45; CI,1.1–11) than for those without either (AOR 2.99; CI,1.1–8.3). We found no association between verbal communication or having a GP order and quality of dying. Conclusion For nursing home residents with dementia there is a strong association between having a written advance directive and quality of dying. Where wishes are written, relatives report lower levels of emotional distress at the end of life. These results underpin the importance of advance care planning for people with dementia and beginning this process as early as possible. PMID:24614884

Cross-cultural differences in dementia: the Sociocultural Health Belief Model.

PubMed

Sayegh, Philip; Knight, Bob G

2013-04-01

Many minority ethnic (ME) older adults face several culturally associated and systemic barriers to timely dementia diagnoses that may result in delays to dementia care-seeking. We aimed to develop and propose a model illustrating variables that influence dementia care-seeking among ME older adults. We conducted a literature review on the effects of these barriers on diagnostic delays and impairment levels at initial evaluation. We also strived to provide a basis for the Sociocultural Health Belief Model (SHBM) to guide future research and service planning pertaining to culture and dementia care-seeking. There was consistent evidence that ME older adults with dementia tended to have greater diagnostic delays and higher levels of cognitive impairment and behavioral and psychological symptoms of dementia at initial evaluation than their non-Hispanic White counterparts. We also found several barriers to dementia care-seeking among ME groups. These barriers included lower levels of acculturation and accurate knowledge about dementia, more culturally associated beliefs about dementia, such as the perception of memory loss as normal aging and stigma associated with dementia, and health system barriers. The SHBM provides an empirically based conceptual framework for examining cross-cultural differences in dementia care-seeking among diverse groups. We provide recommendations for future research, such as the need for research with more diverse ethnic subgroups and the examination of group-specific cultural values. We conclude with a discussion of the clinical and service implications of our review, including potential interventions aimed at facilitating timely dementia diagnoses among ME older adults.

Does an Interdisciplinary Network Improve Dementia Care? Results from the IDemUck-Study

PubMed Central

Köhler, Leonore; Meinke-Franze, Claudia; Hein, Jürgen; Fendrich, Konstanze; Heymann, Romy; Thyrian, Jochen René; Hoffmann, Wolfgang

2014-01-01

Background: Most persons with dementia live at home and are treated in the primary care. However, the ambulatory health care system in Germany contains a lot of “interface problems” and is not optimized for the future challenges. Innovative concepts like regional networks in dementia care exist on a project level and need to be tested for efficacy to encourage implementation. The goal of the study is the scientific evaluation of an already existing regional dementia network. Methods: Prospective randomized controlled trial of 235 community-living elderly with dementia and their family caregivers of network treatment (n=117) compared to usual care (n=118) in a predominantly rural region. The allocation to intervention or control group was based on network membership of their General Practitioner. Intervention patients received diagnostic evaluation and subsequent treatment according to network guidelines. Main outcome measures were the early contact with a neurologic or psychiatric specialist and dementia-specific medication as well as quality of life of the patients, and as secondary outcomes caregiver burden and caregiver health-related quality of life. Results: Network patients were more likely to receive antidementive drugs (50.5 % vs. 35.8 %; p=0.035) and had more often contact to a neurologist (18.6 % vs. 2.8 %; p<0.001). No group differences were found on patient’s quality of life nor overall effects or treatment by time effects. Intervention caregivers reported no significant improvements in health related quality of life measured by SF-36 and EQ-5D. Conclusion: The management of dementia patients in an interdisciplinary regional network solelyprovides measurable advantages with respect to the provision of dementia-specific medication and utilization of medical treatment i.e. referral rates to specialists. Further evaluation research is needed to identify relevant mechanismsof collaborative processes with respect to their impact on patient and caregiver related outcomes. PMID:24938504

The use of cognitive behaviour therapy in the management of BPSD in dementia (Innovative practice).

PubMed

Koder, Deborah

2018-02-01

Psychosocial approaches to the management of behavioural and psychological symptoms of dementia have received much support in the scientific literature. The following paper focuses on cognitive behaviour therapy as a valid framework in assessing and treating people with behavioural and psychological symptoms of dementia. The importance of identifying symptoms of depression and anxiety is emphasized, as cognitive behaviour therapy has been shown to be an effective intervention for these conditions in older adults. Modifications of cognitive behaviour therapy for those with dementia are discussed based on available evidence, with emphasis on incorporating nursing home staff in treatment programs and focusing on behavioural elements of cognitive behaviour therapy such as activity scheduling. The paper concludes with suggestions regarding how to incorporate and promote the use of cognitive behaviour therapy in dementia care settings.

The Italian Dementia National Plan. Commentary.

PubMed

Di Fiandra, Teresa; Canevelli, Marco; Di Pucchio, Alessandra; Vanacore, Nicola

2015-01-01

The Italian Dementia National Plan was formulated in October 2014 by the Italian Ministry of Health in close cooperation with the regions, the National Institute of Health and the three major national associations of patients and carers. The main purpose of this strategy was to provide directive indications for promoting and improving interventions in the dementia field, not limiting to specialist and therapeutic actions, but particularly focusing on the support of patients and families throughout the pathways of care. Four main objectives are indicated: 1) promote health- and social-care interventions and policies; 2) create/strengthen the integrated network of services for dementia based on an integrated approach; 3) implement strategies for promoting appropriateness and quality of care; and 4) improve the quality of life of persons with dementia and their families by supporting empowerment and stigma reduction. These objectives and the pertaining actions are described in the present paper.

Care staff training based on person-centered care and dementia care mapping, and its effects on the quality of life of nursing home residents with dementia.

PubMed

Yasuda, Mami; Sakakibara, Hisataka

2017-09-01

To assess the effects of care staff training based on person-centered care (PCC) and dementia care mapping (DCM) on the quality of life (QOL) of residents with dementia in a nursing home. An intervention of staff training based on PCC and DCM was conducted with 40 care staff members at a geriatric nursing home. The effects of the staff training on the QOL of residents with dementia were evaluated by the DCM measurements of 40 residents with dementia three times at about one-month intervals (first, baseline; second, pre-intervention; third, post-intervention). The well-being and ill-being values (WIB values) of the residents with dementia measured by DCM were not different between the first and second rounds before the staff training (p = 0.211). Meanwhile, the WIB values increased from the first and second rounds to the third post-intervention round (p = 0.035 and p < 0.001, respectively); over 50% of the residents had better WIB values. The behavior category 'interactions with others' in DCM also demonstrated a significant increase in the third round compared to the first round (p = 0.041). Staff training based on PCC and DCM could effectively improve the QOL of residents with dementia.

Designing for Quality: The Understanding Dementia MOOC

ERIC Educational Resources Information Center

King, Carolyn; Kelder, Jo-Anne; Doherty, Kathleen; Phillips, Rob; McInerney, Fran; Walls, Justin; Robinson, Andrew; Vickers, James

2014-01-01

The introduction of Massive Open Online Courses (MOOCs) as a vehicle for education delivery presents opportunities and challenges. In the context of the Wicking Dementia Research and Education Centre (Wicking Centre), the driver to develop a MOOC was the promise of addressing the international deficit in evidence-based dementia education, as well…

Montessori-based activities among persons with late-stage dementia: Evaluation of mental and behavioral health outcomes.

PubMed

Wilks, Scott E; Boyd, P August; Bates, Samantha M; Cain, Daphne S; Geiger, Jennifer R

2017-01-01

Objectives Literature regarding Montessori-based activities with older adults with dementia is fairly common with early stages of dementia. Conversely, research on said activities with individuals experiencing late-stage dementia is limited because of logistical difficulties in sampling and data collection. Given the need to understand risks and benefits of treatments for individuals with late-stage dementia, specifically regarding their mental and behavioral health, this study sought to evaluate the effects of a Montessori-based activity program implemented in a long-term care facility. Method Utilizing an interrupted time series design, trained staff completed observation-based measures for 43 residents with late-stage dementia at three intervals over six months. Empirical measures assessed mental health (anxiety, psychological well-being, quality of life) and behavioral health (problem behaviors, social engagement, capacity for activities of daily living). Results Group differences were observed via repeated measures ANOVA and paired-samples t-tests. The aggregate, longitudinal results-from baseline to final data interval-for the psychological and behavioral health measures were as follows: problem behaviors diminished though not significantly; social engagement decreased significantly; capacities for activities of daily living decreased significantly; quality of life increased slightly but not significantly; anxiety decreased slightly but not significantly; and psychological well-being significantly decreased. Conclusion Improvements observed for quality of life and problem behaviors may yield promise for Montessori-based activities and related health care practices. The rapid physiological and cognitive deterioration from late-stage dementia should be considered when interpreting these results.

Cognitive stimulation therapy in the Italian context: its efficacy in cognitive and non-cognitive measures in older adults with dementia.

PubMed

Capotosto, Emanuela; Belacchi, Carmen; Gardini, Simona; Faggian, Silvia; Piras, Federica; Mantoan, Vanessa; Salvalaio, Elisa; Pradelli, Samantha; Borella, Erika

2017-03-01

Cognitive stimulation therapy (CST) has been shown to have significant benefits in enhancing cognitive functioning and improving the quality of life of people with mild to moderate dementia. The present study examines the efficacy of the Italian version of the therapy (CST-IT). Older adults with mild to moderate dementia (n = 39) were randomly assigned to two programs: one group participated in the CST-IT, consisting of 14 sessions (twice a week for 7 weeks) and the active control group took part in alternative general activities. The outcome measures were cognitive functioning (measured by the Mini-Mental State Examination-MMSE-, the Alzheimer's Disease Assessment scale-cognitive subscale, the backward digit span test, and a narrative language test); quality of life (Quality of life--Alzheimer's Disease scale); mood (Cornell scale for depression in dementia and the social and emotional loneliness scale); functional activities in daily living (Disability Assessment for Dementia); and behavior (neuropsychiatric inventory). After the intervention, only the CST-IT group maintained its MMSE score, while the control group displayed deterioration. The CST-IT group also performed better in some of the cognitive measures (Alzheimer's Disease Assessment Scale-Cognitive subscale and narrative language), mood measures (Cornell scale, social and emotional loneliness scale with a decrease in reported loneliness), and the Quality of life--Alzheimer's Disease scale. No other treatment effect was observed. The findings confirm the efficacy, at least in the short term, of the CST in sustaining cognitive functions and perceived quality of life in older adults with dementia in the Italian care setting as well. Copyright © 2016 John Wiley & Sons, Ltd.

Anxiety and Stigma in Dementia: A Threat to Aging in Place

PubMed Central

Riley, Rebecca J.; Burgener, Sandy

2014-01-01

Synopsis The number of Americans with dementia is expected to increase as the population ages. Developing dementia is feared by many older adults and may result in anxiety in persons with dementia (PwD). This article focuses on anxiety, one of the least understood symptoms associated with dementia in community-dwelling older adults, the stigma of dementia, and the relationship between anxiety and stigma in dementia. When undetected and untreated, anxiety and associated stigma can adversely affect quality of life and the ability to age in place. The paper begins by describing dementia-related anxiety. Next, based on research by the authors and others, the association between stigma and anxiety is examined. The paper concludes with recommendations for assessment and treatment of anxiety and stigma in persons with dementia that will better allow them to age in place. PMID:24846469

Prevalence of and associations with agitation in residents with dementia living in care homes: MARQUE cross-sectional study.

PubMed

Livingston, Gill; Barber, Julie; Marston, Louise; Rapaport, Penny; Livingston, Deborah; Cousins, Sian; Robertson, Sarah; La Frenais, Francesca; Cooper, Claudia

2017-07-01

Agitation is reportedly the most common neuropsychiatric symptom in care home residents with dementia. To report, in a large care home survey, prevalence and determinants of agitation in residents with dementia. We interviewed staff from 86 care homes between 13 January 2014 and 12 November 2015 about residents with dementia with respect to agitation (Cohen-Mansfield Agitation Inventory (CMAI)), quality of life (DEMQOL-proxy) and dementia severity (Clinical Dementia Rating). We also interviewed residents and their relatives. We used random effects models adjusted for resident age, gender, dementia severity and care home type with CMAI as a continuous score. Out of 3053 (86.2%) residents who had dementia, 1489 (52.7%) eligible residents participated. Fifteen per cent of residents with very mild dementia had clinically significant agitation compared with 33% with mild (odds ratios (ORs)=4.49 95% confidence interval (CI)=2.30) and 45% with moderate or severe dementia (OR=6.95 95% CI=3.63, 13.31 and OR=6.23 95% CI=3.25, 11.94, respectively). More agitation was associated with lower quality of life (regression coefficient (rc)=-0.53; 95% CI=-0.61, -0.46) but not with staffing or resident ratio (rc=0.03; 95% CI=-0.04, 0.11), level of residents' engagement in home activities (rc=3.21; 95% CI=-0.82, 7.21) or family visit numbers (rc=-0.03; 95% CI=-0.15, 0.08). It was correlated with antipsychotic use (rc=6.45; 95% CI=3.98, 8.91). Care home residents with dementia and agitation have lower quality of life. More staffing time and activities as currently provided are not associated with lower agitation levels. New approaches to develop staff skills in understanding and responding to the underlying reasons for individual resident's agitation require development and testing. None. © The Royal College of Psychiatrists 2017. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) license.

Prevalence of and associations with agitation in residents with dementia living in care homes: MARQUE cross-sectional study

PubMed Central

Barber, Julie; Marston, Louise; Rapaport, Penny; Livingston, Deborah; Cousins, Sian; Robertson, Sarah; La Frenais, Francesca; Cooper, Claudia

2017-01-01

Background Agitation is reportedly the most common neuropsychiatric symptom in care home residents with dementia. Aims To report, in a large care home survey, prevalence and determinants of agitation in residents with dementia. Method We interviewed staff from 86 care homes between 13 January 2014 and 12 November 2015 about residents with dementia with respect to agitation (Cohen-Mansfield Agitation Inventory (CMAI)), quality of life (DEMQOL-proxy) and dementia severity (Clinical Dementia Rating). We also interviewed residents and their relatives. We used random effects models adjusted for resident age, gender, dementia severity and care home type with CMAI as a continuous score. Results Out of 3053 (86.2%) residents who had dementia, 1489 (52.7%) eligible residents participated. Fifteen per cent of residents with very mild dementia had clinically significant agitation compared with 33% with mild (odds ratios (ORs)=4.49 95% confidence interval (CI)=2.30) and 45% with moderate or severe dementia (OR=6.95 95% CI=3.63, 13.31 and OR=6.23 95% CI=3.25, 11.94, respectively). More agitation was associated with lower quality of life (regression coefficient (rc)=−0.53; 95% CI=−0.61, −0.46) but not with staffing or resident ratio (rc=0.03; 95% CI=−0.04, 0.11), level of residents’ engagement in home activities (rc=3.21; 95% CI=−0.82, 7.21) or family visit numbers (rc=−0.03; 95% CI=−0.15, 0.08). It was correlated with antipsychotic use (rc=6.45; 95% CI=3.98, 8.91). Conclusions Care home residents with dementia and agitation have lower quality of life. More staffing time and activities as currently provided are not associated with lower agitation levels. New approaches to develop staff skills in understanding and responding to the underlying reasons for individual resident’s agitation require development and testing. Declaration of interest None. Copyright and usage © The Royal College of Psychiatrists 2017. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) license. PMID:28794896

Dementia care mapping to support staff in the care of people with intellectual disability and dementia: a feasibility study.

PubMed

Schaap, Feija D; Fokkens, Andrea S; Dijkstra, Geke J; Reijneveld, Sijmen A; Finnema, Evelyn J

2018-04-24

The number of people with intellectual disability and dementia increases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intellectual disability-care. This qualitative study examines the feasibility of DCM for older people with intellectual disability and dementia. The present authors obtained data in focus groups and interviews with professional users and analysed using a framework for feasibility studies. With experts in dementia and intellectual disability researches, the present authors determined the overall feasibility. DCM was found to be feasible in intellectual disability-care, regarding five domains of feasibility. Staff reported DCM to be useful and valuable and addresses to their demand for skills and knowledge. All professional users found DCM feasible in intellectual disability-care, which was confirmed by experts. DCM is feasible in intellectual disability-care. When fully tailored to intellectual disability-care, DCM is useful and provides opportunities to assess its effectiveness. © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

Best practice in caring for adults with dementia and learning disabilities.

PubMed

Strydom, André; Al-Janabi, Tamara; Houston, Marie; Ridley, James

2016-10-05

People with learning disabilities, particularly Down's syndrome, are at increased risk of dementia. At present, services and care tailored to people with both dementia and a learning disability are unsatisfactory. This article reviews the literature specific to dementia in people with learning disabilities, including: comprehensive screening, diagnosis, management, environmental considerations, end of life care and training issues for nursing staff. Recommendations for best practice and service improvement are made to improve the quality of life for individuals with dementia and learning disabilities, pre and post-diagnosis.

Effectiveness of a Psycho-Educational Staff Training Program on Attitudes of Staff in a Long-Term Care Facility: A Pilot Study and Framework

ERIC Educational Resources Information Center

Elpers, Kathy; Amano, Takashi; DeCoster, Vaughn; Johnson, Missy

2017-01-01

Managing Behavioral and Psychological Symptoms of Dementia (BPSD) is a significant challenge for staff working in long-term care facilities. This study examines the effectiveness of a psycho-educational training aimed at changing staff's attitudes. The results indicated that participants' attitudes toward dementia were more positive,…

Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis

PubMed Central

Maio, Laura; Rait, Greta; Iliffe, Steve

2014-01-01

Background: People with dementia do not always receive good quality end-of-life care, with undertreated pain, aggressive medical interventions and limited access to hospice care being common. Family carers often provide the majority of informal care for people with dementia, therefore may be best placed to comment on quality of care. Aim: We explored what quality end-of-life care for dementia is from the perspective of family carers. Design: A review of qualitative evidence taking a systematic approach using a narrative synthesis with tabulation, textual description of studies and thematic analysis as tools, following the guidelines from the Economic and Social Research Council. Data sources: Keywords and subject headings were searched in MEDLINE, EMBASE, CINAHL, SCIE and PsycINFO for studies from 1990 in April 2012 and updated in May 2013. Reference lists were checked and citation searches undertaken. Results: Eight studies were included. There was an overarching theme of ‘A family’s belief of death and their choice of treatment’. Three further themes were then identified to explain family carers’ beliefs: the relationship with professionals as a core component of care quality; emotional and commitment pressures of caring and finally, family carers’ ability to think about death and dying. Conclusion: It is difficult to define what constitutes high-quality end-of-life care for people with dementia from the perspective of family carers. Their views expressed in the literature appear to demonstrate more variation of preference of care and treatment and their uncertainty of this. PMID:24625567

The Effect of Aroma Hand Massage Therapy for People with Dementia.

PubMed

Yoshiyama, Kazuyo; Arita, Hideko; Suzuki, Jinichi

2015-12-01

Clinical aromatherapy is a complementary therapy that may be very helpful for elderly dementia care. Aromatherapy may reduce the behavioral and psychological symptoms of dementia (BPSD), improve quality of care, and thus improve the quality of life for people with dementia. In this pilot study, aroma hand massage therapy was used for elderly patients in a medical institution in Japan. The study assessed the effectiveness and safety of clinical aromatherapy as part of routine integrative care among people with dementia in a clinical care setting. The randomized, crossover pilot trials were performed among 14 patients with mild-to-moderate dementia older than age 65 years living in a nursing home in Nara, Japan. Participants were divided into two groups and offered, alternately, control therapy and clinical aromatherapy 3 times a week for the 4-week trials. The effects on BPSD and activities of daily living (ADLs) were evaluated quantitatively before and after the study and 4 weeks after the study ended as a follow-up. Observation records were also collected to obtain qualitative data. The quantitative data showed that neither therapy significantly improved the BPSD or ADL results. The qualitative data were classified into four main categories-mood, behavior, verbal communication, and nonverbal communication-reflecting the positive experiences of participants during both therapies. No harmful reactions or changes in medication occurred during the study. This pilot study demonstrated that clinical aromatherapy was clinically safe but did not lead to statistically significant improvements in BPSD or ADL among people with dementia. Further research on therapeutic effects is needed to develop high-quality care with clinical aromatherapy for elderly patients with dementia in Japan and to fully establish evidence for effective and safe practice in health care institutions.

A qualitative exploration of perceived key knowledge and skills in end-of-life care in dementia patients among medical, nursing, and pharmacy students.

PubMed

Nguyen, Christopher M; Jansen, Bannin De Witt; Hughes, Carmel M; Rasmussen, Wendy; Weckmann, Michelle T

2015-01-01

The steady increase in the number of people living and dying with dementia, coupled with the recent focus on quality of care, has highlighted the importance of dementia training for health care professionals. This exploratory study aimed to discover which skills health care students felt were important in providing quality end-of-life care to dementia patients. Ninety-four medicine, nursing, and pharmacy students participated in a larger study using open-ended and closed questions to explore attitudes related to caring for dementia patients at the end of life. This study looks at the student responses to an open-ended question regarding the skills and knowledge they believe are needed to provide end-of-life care to dementia patients. Individual responses were reviewed by the researchers, coded into key issues, and tabulated for frequency of occurrences and group differences. Several common issues emerged: knowledge, patience, empathy, understanding, family involvement, compassion, medication knowledge, respect/patient autonomy, communication, quality of life, and patient education. Significant differences were observed among the participant groups on the following issues: Patience and understanding (pharmacy students mentioned these issues less frequently than medical and nursing students), compassion (medical students mentioned this issue more frequently than pharmacy students), and medication knowledge (pharmacy students mentioned this issue more frequently than medical and nursing students). Different health care disciplines (in-training) value different skill sets for the provision of dementia care at the end-of-life. As health care education for dementia patients at the end of life is expanded, it will be important to understand which skills both patients and health care students value.

A Simple and Practical Index to Measure Dementia-Related Quality of Life.

PubMed

Arons, Alexander M M; Schölzel-Dorenbos, Carla J M; Olde Rikkert, Marcel G M; Krabbe, Paul F M

2016-01-01

Research on new treatments for dementia is gaining pace worldwide in an effort to alleviate this growing health care problem. The optimal evaluation of such interventions, however, calls for a practical and credible patient-reported outcome measure. To describe the refinement of the Dementia Quality-of-life Instrument (DQI) and present its revised version. A prototype of the DQI was adapted to cover a broader range of health-related quality of life (HRQOL) and to improve consistency in the descriptions of its domains. A valuation study was then conducted to assign meaningful numbers to all DQI health states. Pairs of DQI states were presented to a sample of professionals working with people with dementia and a representative sample of the Dutch population. They had to repeatedly select the best DQI state, and their responses were statistically modeled to obtain values for each health state. In total, 207 professionals working with people with dementia and 631 members of the general population completed the paired comparison tasks. Statistically significant differences between the two samples were found for the domains of social functioning, mood, and memory. Severe problems with physical health and severe memory problems were deemed most important by the general population. In contrast, severe mood problems were considered most important by professionals working with people with dementia. The DQI is a simple and feasible measurement instrument that expresses the overall HRQOL of people suffering from dementia in a single meaningful number. Current results suggest that revisiting the discussion of using values from the general population might be warranted in the dementia context. Copyright © 2016 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

The role of music in the lives of older adults with dementia ageing in place: A scoping review.

PubMed

Elliott, Melanie; Gardner, Paula

2018-02-01

The number of people around the world living with dementia is predicted to rise from 44 million to 135 million by 2050. Traditional treatments for dementia have been largely unsuccessful and prompted the emergence of alternative strategies. Music is emerging as an effective therapeutic strategy for older adults with dementia however, most of the work to date has focused on institutions. The purpose of this scoping review was to summarize what is known about the role and impact that music plays in the lives of community-dwelling older adults with dementia. Using a five-stage framework for conducting a scoping review, analysis revealed three ways in which music influences the lives of community-dwelling older adults with dementia: (a) reduced agitation, (b) improved cognition, and (c) enhanced social well-being. The concept of personhood provided a lens with which to conceptualize the findings and highlights the need for continued research.

The dementia diagnosis: a literature review of information, understanding, and attributions.

PubMed

Stokes, Laura; Combes, Helen; Stokes, Graham

2015-09-01

This review examines how people understand and make sense of a dementia diagnosis. The review explores how lay frameworks and information presented at diagnosis may inform a caregiver's understanding of dementia in a family member. Existing qualitative research exploring how caregivers understand and make sense of dementia is reviewed. A literature search was conducted, and the results indicated that family carers often receive little or unclear information about dementia, with diagnostic information often delivered in euphemistic terms. Lack of clarity regarding diagnosis and prognosis creates uncertainty for caregivers and impacts future care planning. Caregiver's understandings of the condition vary, with some symptoms often not attributed to the condition. The literature highlights significant gaps and misconceptions in public knowledge regarding dementia, which raises questions about how family caregivers understand the condition. Further research is required to explore how information is presented to family carers at the time of diagnosis and how this is used to understand the condition. © 2014 The Authors. Psychogeriatrics © 2014 Japanese Psychogeriatric Society.

Quality of relationships as predictors of outcomes in people with dementia: a systematic review protocol.

PubMed

Edwards, Hannah B; Savović, Jelena; Whiting, Penny; Leach, Verity; Richards, Alison; Cullum, Sarah; Cheston, Richard

2016-04-04

Serious adverse outcomes for people with dementia include institutionalisation, hospitalisation, death, development of behavioural and psychiatric symptoms, and reduced quality of life. The quality of the relationship between the person with dementia and their informal/family carer is thought to affect the risk of these outcomes. However, little is known about which aspects of relationship quality are important, or how they affect outcomes for people with dementia. This will be a systematic review of the literature. Electronic databases MEDLINE, EMBASE, Web of Science, PsycInfo, the Cochrane Database, ALOIS and OpenGrey will be searched from inception. 2 independent reviewers will screen results for eligibility with standardised criteria. Data will be extracted for relevant studies, and information on the associations between relationship quality and dementia outcomes will be synthesised. Meta-analysis will be performed if possible to calculate pooled effect sizes. Narrative synthesis will be performed if study heterogeneity rules out meta-analysis. Ethical review is not necessary as this review summarises data from previous studies. Results will be disseminated via peer-reviewed publication. Results will also be disseminated to a patient and public involvement group and an expert panel for their views on the findings and implications for future work. CRD42015020518. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Effects of group music therapy on quality of life, affect, and participation in people with varying levels of dementia.

PubMed

Solé, Carme; Mercadal-Brotons, Melissa; Galati, Adrián; De Castro, Mónica

2014-01-01

There is substantive literature reporting the importance and benefits of music and music therapy programs for older adults, and more specifically for those with dementia. However, few studies have focused on how these programs may contribute to quality of life. Objectives for this exploratory study were: (a) to evaluate the potential effect of group music therapy program participation on the quality of life of older people with mild, moderate, and severe dementia living in a nursing home; (b) to identify and analyze changes in affect and participation that take place during music therapy sessions; and (c) to suggest recommendations and strategies for the design of future music therapy studies with people in various stages of dementias. Sixteen participants (15 women; 1 man), with varying level of dementia participated in 12 weekly music therapy sessions. Based on Global Deterioration Scale (GDS) scores, phases of cognitive function were as follows: mild (n = 9; GDS 3-4), moderate (n = 5; GDS 5), and severe (n = 2; GDS 6-7). Data were collected using the GENCAT scale on Quality of Life. Sessions 1, 6, and 12 were also video recorded for post-hoc analysis of facial affect and participation behaviors. There was no significant difference in quality of life scores from pre to posttest (z = -0.824; p =0.410). However, there was a significant improvement in median subscale scores for Emotional Well-being (z = -2.176, p = 0.030), and significant worsening in median subscale scores for Interpersonal Relations (z =-2.074; p = 0.038) from pre to posttest. With regard to affect and participation, a sustained high level of participation was observed throughout the intervention program. Expressions of emotion remained low. Authors discuss implications of study findings to inform and improve future research in the areas of music therapy, quality of life, and individuals with dementia. © the American Music Therapy Association 2014. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

A Landscape for Training in Dementia Knowledge Translation (DKT)

ERIC Educational Resources Information Center

Illes, Judy; Chahal, Neil; Beattie, B. Lynn

2011-01-01

Meaningful translation of dementia research findings from the bench to the bedside is dependent on the quality of the knowledge to transfer and the availability and skills of investigators engaged in the knowledge translation process. Although there is no shortage of research on dementia, the latter has been more challenging. Results from a survey…

Effects of Ginkgo biloba on dementia: An overview of systematic reviews.

PubMed

Yuan, Qiuju; Wang, Chong-Wen; Shi, Jun; Lin, Zhi-Xiu

2017-01-04

To assess the cumulative evidence on the efficacy and effectiveness of Ginkgo biloba extract (GbE) in the treatment of dementia. Overview of systematic reviews. PubMed/MEDLINE, EMBASE, Cochrane, and Google Scholar were searched in June 2016. Systematic reviews (SRs) of randomized controlled trials (RCTs) evaluating the effects of GbE on different outcomes in people with dementia or cognitive impairment were included. Methodological quality of the included SRs was assessed using the AMSTAR tool. The quality of evidence of the primary studies was assessed using GRADE. Twelve SRs with meta-analyses met the eligibility criteria. The quality of the evidence reported in these SRs varies ranging from low to moderate level. Overall, the available evidence suggests that GbE has potentially beneficial effects over placebo on cognitive performance, activities of daily living, and clinical global impression in the treatment of dementia at doses greater than 200mg/day (usually 240mg/day) administrated for 22 weeks or longer, and that GbE appears to be safe for human consumption. No sufficient evidence supports the favorable effects of GbE administrated for less than 22 weeks. The available evidence consistently indicates that a dose less than 200mg/day of GbE may not be adequate to yield clinical relevant effects in the treatment of dementia. GbE has potentially beneficial effects for people with dementia when it is administered at doses greater than 200mg/day for at least 5 months. Given the lower quality of the evidence, further rigorously-designed, multicenter-based, large-scale RCTs are warranted. Copyright © 2016. Published by Elsevier Ireland Ltd.

Effects of Exercise on Type 2 Diabetes Mellitus-Related Cognitive Impairment and Dementia.

PubMed

Callisaya, Michele; Nosaka, Kazunori

2017-01-01

Cognitive impairment and dementia are common contributors to institutionalization and loss of quality of life in older people. Both type 2 diabetes mellitus (T2DM) and physical inactivity are prevalent and important modifiable risk factors for developing dementia. Physical activity is recommended in the management of T2DM, and there is growing evidence that exercise, a subgroup of physical activity, is also beneficial for maintaining and improving brain structure and function. This paper reviews the evidence for a benefit of exercise on T2DM related cognitive impairment and dementia. In addition, the type (e.g., aerobic, resistance), intensity, duration, and frequency of exercise are discussed. This review shows that although exercise has known benefits on the mechanisms linking T2DM to dementia, there are very few randomized controlled trials examining whether this is the case. It is concluded that the uptake of exercise for the brain has great potential to improve quality of life and provide significant cost savings, but further research is warranted to clarify the effects of exercise on T2DM and those on dementia.

Behavioural and psychological symptoms in dementia and the challenges for family carers: systematic review.

PubMed

Feast, Alexandra; Orrell, Martin; Charlesworth, Georgina; Melunsky, Nina; Poland, Fiona; Moniz-Cook, Esme

2016-05-01

Tailored psychosocial interventions can help families to manage behavioural and psychological symptoms in dementia (BPSD), but carer responses to their relative's behaviours contribute to the success of support programmes. To understand why some family carers have difficulty in dealing with BPSD, in order to improve the quality of personalised care that is offered. A systematic review and meta-ethnographic synthesis was conducted of high-quality quantitative and qualitative studies between 1980 and 2012. We identified 25 high-quality studies and two main reasons for behaviours being reported as challenging by family carers: changes in communication and relationships, resulting in 'feeling bereft'; and perceptions of transgressions against social norms associated with 'misunderstandings about behaviour' in the relative with dementia. The underlying belief that their relative had lost, or would inevitably lose, their identity to dementia was a fundamental reason why family carers experienced behaviour as challenging. Family carers' perceptions of BPSD as challenging are associated with a sense of a declining relationship, transgressions against social norms and underlying beliefs that people with dementia inevitably lose their 'personhood'. Interventions for the management of challenging behaviour in family settings should acknowledge unmet psychological need in family carers. © The Royal College of Psychiatrists 2016.

Systems to identify potentially inappropriate prescribing in people with advanced dementia: a systematic review.

PubMed

Disalvo, Domenica; Luckett, Tim; Agar, Meera; Bennett, Alexandra; Davidson, Patricia Mary

2016-05-31

Systems for identifying potentially inappropriate medications in older adults are not immediately transferrable to advanced dementia, where the management goal is palliation. The aim of the systematic review was to identify and synthesise published systems and make recommendations for identifying potentially inappropriate prescribing in advanced dementia. Studies were included if published in a peer-reviewed English language journal and concerned with identifying the appropriateness or otherwise of medications in advanced dementia or dementia and palliative care. The quality of each study was rated using the STrengthening the Reporting of OBservational studies in Epidemiology (STROBE) checklist. Synthesis was narrative due to heterogeneity among designs and measures. Medline (OVID), CINAHL, the Cochrane Database of Systematic Reviews (2005 - August 2014) and AMED were searched in October 2014. Reference lists of relevant reviews and included articles were searched manually. Eight studies were included, all of which were scored a high quality using the STROBE checklist. Five studies used the same system developed by the Palliative Excellence in Alzheimer Care Efforts (PEACE) Program. One study used number of medications as an index, and two studies surveyed health professionals' opinions on appropriateness of specific medications in different clinical scenarios. Future research is needed to develop and validate systems with clinical utility for improving safety and quality of prescribing in advanced dementia. Systems should account for individual clinical context and distinguish between deprescribing and initiation of medications.

The diagnosis of dementia due to Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease

PubMed Central

McKhann, Guy M.; Knopman, David S.; Chertkow, Howard; Hyman, Bradley T.; Jack, Clifford R.; Kawas, Claudia H.; Klunk, William E.; Koroshetz, Walter J.; Manly, Jennifer J.; Mayeux, Richard; Mohs, Richard C.; Morris, John C.; Rossor, Martin N.; Scheltens, Philip; Carrillo, Maria C.; Thies, Bill; Weintraub, Sandra; Phelps, Creighton H.

2012-01-01

The National Institute on Aging and the Alzheimer’s Association charged a workgroup with the task of revising the 1984 criteria for Alzheimer’s disease (AD) dementia. The workgroup sought to ensure that the revised criteria would be flexible enough to be used by both general healthcare providers without access to neuropsychological testing, advanced imaging, and cerebrospinal fluid measures, and specialized investigators involved in research or in clinical trial studies who would have these tools available. We present criteria for all-cause dementia and for AD dementia. We retained the general framework of probable AD dementia from the 1984 criteria. On the basis of the past 27 years of experience, we made several changes in the clinical criteria for the diagnosis. We also retained the term possible AD dementia, but redefined it in a manner more focused than before. Bio-marker evidence was also integrated into the diagnostic formulations for probable and possible AD dementia for use in research settings. The core clinical criteria for AD dementia will continue to be the cornerstone of the diagnosis in clinical practice, but biomarker evidence is expected to enhance the pathophysiological specificity of the diagnosis of AD dementia. Much work lies ahead for validating the biomarker diagnosis of AD dementia. PMID:21514250

'The living death of Alzheimer's' versus 'Take a walk to keep dementia at bay': representations of dementia in print media and carer discourse.

PubMed

Peel, Elizabeth

2014-07-01

Understanding dementia is a pressing social challenge. This article draws on the 'Dementia talking: care conversation and communication' project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets - a corpus of 350 recent UK national newspaper articles and qualitative data derived from in-depth interviews with informal carers. These data were analysed using a thematic discursive approach. A 'panic-blame' framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a 'tsunami' and 'worse than death', juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to 'stave off' the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any corresponding blame and accountability. I argue that the presence of individualistic dementia 'preventative' behaviour in media discourse is problematic, especially in comparison to other more 'controllable' and treatable chronic conditions. Engagement with, and critique of, the nascent panic-blame cultural context may be fruitful in enhancing positive social change for people diagnosed with dementia and their carers. © 2014 The Author Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for Sociology of Health and Illness.

‘The living death of Alzheimer's’ versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse

PubMed Central

Peel, Elizabeth

2014-01-01

Understanding dementia is a pressing social challenge. This article draws on the ‘Dementia talking: care conversation and communication’ project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets – a corpus of 350 recent UK national newspaper articles and qualitative data derived from in-depth interviews with informal carers. These data were analysed using a thematic discursive approach. A ‘panic-blame’ framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a ‘tsunami’ and ‘worse than death’, juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to ‘stave off’ the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any corresponding blame and accountability. I argue that the presence of individualistic dementia ‘preventative’ behaviour in media discourse is problematic, especially in comparison to other more ‘controllable’ and treatable chronic conditions. Engagement with, and critique of, the nascent panic-blame cultural context may be fruitful in enhancing positive social change for people diagnosed with dementia and their carers. PMID:24935028

Marital Status and Persons With Dementia in Assisted Living.

PubMed

Fields, Noelle L; Richardson, Virginia E; Schuman, Donna

2017-03-01

Despite the prevalence of dementia among residents in assisted living (AL), few researchers have focused on the length of stay (LOS) in AL among this population. Little is known about the factors that may contribute to LOS in these settings, particularly for residents with dementia. In the current study, a sub-set of AL residents with dementia (n = 112) was utilized to examine whether marital status was associated with LOS in AL as this has received sparse attention in previous research despite studies suggesting that marital status influences LOS in other health-care and long-term care settings. The Andersen-Newman behavioral model was used as a conceptual framework for the basis of this study of LOS, marital status, and dementia in AL. We hypothesized that persons with dementia who were married would have longer LOS than unmarried persons with dementia in AL. Cox regression was used to examine the association between marital status and LOS in AL of residents with dementia and whether activities of daily living were related to discharge from AL settings among married and unmarried residents with dementia. Main effects for marital status and the interaction between marital status and mobility with LOS were examined. Study findings provide information related to the psychosocial needs of AL residents with dementia and offer implications for assessing the on-going needs of vulnerable AL residents.

Music therapy in dementia: a narrative synthesis systematic review.

PubMed

McDermott, Orii; Crellin, Nadia; Ridder, Hanne Mette; Orrell, Martin

2013-08-01

Recent reviews on music therapy for people with dementia have been limited to attempting to evaluate whether it is effective, but there is a need for a critical assessment of the literature to provide insight into the possible mechanisms of actions of music therapy. This systematic review uses a narrative synthesis format to determine evidence for effectiveness and provide insight into a model of action. The narrative synthesis framework consists of four elements: (i) theory development; (ii) preliminary synthesis of findings; (iii) exploration of relationships between studies; and (iv) assessment of the robustness of the synthesis. Electronic and hand searches identified 263 potentially relevant studies. Eighteen studies met the full inclusion criteria. Three distinctive strands of investigations emerged: eight studies explored behavioural and psychological aspects, five studies investigated hormonal and physiological changes, and five studies focused on social and relational aspects of music therapy. The musical interventions in the studies were diverse, but singing featured as an important medium for change. Evidence for short-term improvement in mood and reduction in behavioural disturbance was consistent, but there were no high-quality longitudinal studies that demonstrated long-term benefits of music therapy. Future music therapy studies need to define a theoretical model, include better-focused outcome measures, and discuss how the findings may improve the well-being of people with dementia. Copyright © 2012 John Wiley & Sons, Ltd.

Five-class differential diagnostics of neurodegenerative diseases using random undersampling boosting.

PubMed

Tong, Tong; Ledig, Christian; Guerrero, Ricardo; Schuh, Andreas; Koikkalainen, Juha; Tolonen, Antti; Rhodius, Hanneke; Barkhof, Frederik; Tijms, Betty; Lemstra, Afina W; Soininen, Hilkka; Remes, Anne M; Waldemar, Gunhild; Hasselbalch, Steen; Mecocci, Patrizia; Baroni, Marta; Lötjönen, Jyrki; Flier, Wiesje van der; Rueckert, Daniel

2017-01-01

Differentiating between different types of neurodegenerative diseases is not only crucial in clinical practice when treatment decisions have to be made, but also has a significant potential for the enrichment of clinical trials. The purpose of this study is to develop a classification framework for distinguishing the four most common neurodegenerative diseases, including Alzheimer's disease, frontotemporal lobe degeneration, Dementia with Lewy bodies and vascular dementia, as well as patients with subjective memory complaints. Different biomarkers including features from images (volume features, region-wise grading features) and non-imaging features (CSF measures) were extracted for each subject. In clinical practice, the prevalence of different dementia types is imbalanced, posing challenges for learning an effective classification model. Therefore, we propose the use of the RUSBoost algorithm in order to train classifiers and to handle the class imbalance training problem. Furthermore, a multi-class feature selection method based on sparsity is integrated into the proposed framework to improve the classification performance. It also provides a way for investigating the importance of different features and regions. Using a dataset of 500 subjects, the proposed framework achieved a high accuracy of 75.2% with a balanced accuracy of 69.3% for the five-class classification using ten-fold cross validation, which is significantly better than the results using support vector machine or random forest, demonstrating the feasibility of the proposed framework to support clinical decision making.

Improving the quality of care for mild to moderate dementia: an evaluation of the Croydon Memory Service Model.

PubMed

Banerjee, Sube; Willis, Rosalind; Matthews, David; Contell, Faith; Chan, Jeni; Murray, Joanna

2007-08-01

The large majority of people with dementia receive nothing in the way of specialist assessment and care at any stage of their illness. There is a particular lack of services focussed on early identification and intervention in dementia where there is the possibility of long-term harm reduction for people with dementia and their family carers. We have developed a model of care that is complementary to local systems of health and social care (The Croydon Memory Service Model [CMSM]). This is a low-cost, high-throughput, generic service to enable early identification and intervention in dementia. It is a multi-agency approach with joint ownership by health services, social services and the voluntary sector with embedded specifically-tailored approaches to primary care and minority ethnic communities. We completed a service evaluation of the introduction of the CMSM in a single borough in South London. Six predefined service goals were set: high acceptability; high appropriate referral rate; successful engagement with people from minority ethnic groups; successful engagement with people with young onset dementia; focus on engagement with mild cases to enable early intervention; and an increase in the overall number of new cases of dementia seen. Mixed qualitative and quantitative methodologies were used including a description and 6-month follow-up of a cohort of 290 consecutive referrals. All key predefined service goals were met: 95% acceptability; 94% appropriate referrals; successful engagement with minority ethnic groups (two-fold greater number compared with that expected from general population demographic data); 17% of referrals under 65 years of age; 68% referrals with mild or minimal dementia severity; and an estimated 63% increase in the number of new cases of dementia seen in Croydon. At 6-month follow up, those referred to the service had decreased behavioural disturbance and increased quality of life compared with baseline. Specific services for early dementia, which deliver diagnosis and care, can be established. These services can increase the numbers of people with early dementia identified and provided with care. Those receiving such services appear to improve in terms of quality of life and behavioural and psychological symptoms of dementia. Next steps should include the establishment of such services in other representative areas and evaluation of their effectiveness in comparison with other models of care.

Deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: a European study.

PubMed

Giebel, Clarissa M; Sutcliffe, Caroline; Stolt, Minna; Karlsson, Staffan; Renom-Guiteras, Anna; Soto, Maria; Verbeek, Hilde; Zabalegui, Adelaida; Challis, David

2014-08-01

Performing basic activities of daily living (ADLs) is one of the major difficulties encountered in dementia, which can have considerable negative impacts on the quality of life (QoL) of people with dementia (PwD). However, the extent to which basic ADL performance deteriorates across mild, moderate, and severe dementia is little examined and its impact, together with depression and neuropsychiatric behavior, upon QoL, is of considerable relevance across European countries. Data were drawn from people living in the community who were participants in a large-scale European study on transition from community living to care homes of PwD. PwD completed measures on cognitive functioning and QoL, and informal carers reported upon QoL, depressive symptomatology, psychopathology, and functional ability of the PwD. ADL performance deteriorated differently for each activity. In particular, toileting, transfer, and feeding remained relatively intact throughout, whereas performance on bathing and dressing deteriorated to a greater extent from mild to severe dementia. It appears that continence was not affected by the stage of dementia with similar levels of impairment. Basic ADL performance impacted to different degrees on QoL across dementia stages and countries. Interventions aimed at maintaining independence or QoL need to target different ADLs across different dementia stages and perhaps also tailor interventions to the context of different countries. Findings contribute to the development of non-pharmaceutical interventions and governmental pledges to promote independence in dementia.

Report by the Spanish Foundation of the Brain on the social impact of Alzheimer disease and other types of dementia.

PubMed

Villarejo Galende, A; Eimil Ortiz, M; Llamas Velasco, S; Llanero Luque, M; López de Silanes de Miguel, C; Prieto Jurczynska, C

2017-12-14

Knowledge of the socioeconomic impact of dementia-related disorders is essential for appropriate management of healthcare resources and for raising social awareness. We performed a literature review of the published evidence on the epidemiology, morbidity, mortality, associated disability and dependence, and economic impact of dementia and Alzheimer disease (AD) in Spain. Most population studies of patients older than 65 report prevalence rates ranging from 4% to 9%. Prevalence of dementia and AD is higher in women for nearly every age group. AD is the most common cause of dementia (50%-70% of all cases). Dementia is associated with increased morbidity, mortality, disability, and dependence, and results in a considerable decrease in quality of life and survival. Around 80% of all patients with dementia are cared for by their families, which cover a mean of 87% of the total economic cost, resulting in considerable economic and health burden on caregivers and loss of quality of life. The economic impact of dementia is huge and difficult to evaluate due to the combination of direct and indirect costs. More comprehensive programmes should be developed and resources dedicated to research, prevention, early diagnosis, multidimensional treatment, and multidisciplinary management of these patients in order to reduce the health, social, and economic burden of dementia. Copyright © 2017 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

Predicting desire for institutional placement among racially diverse dementia family caregivers: the role of quality of care.

PubMed

Sun, Fei; Durkin, Daniel W; Hilgeman, Michelle M; Harris, Grant; Gaugler, Joseph E; Wardian, Jana; Allen, Rebecca S; Burgio, Louis D

2013-06-01

Literature on institutionalization of patients with dementia has not considered the role of caregivers' quality of care, which encompasses caregivers' exemplary care (EC) behaviors and caregivers' potentially harmful behaviors (PHBs) toward care recipients. This study sought to understand the role of quality of care in mediating between caregiving stressors and caregiver desire to institutionalize (DTI) a patient with dementia. A sample of 612 family caregivers from diverse racial/ethnic backgrounds was drawn from the baseline data of the Resources for Enhancing Alzheimer's Caregiver Heath (REACH II) project. Multiple mediator models were run using Preacher and Hayes asymptotic and resampling strategies to assess direct and indirect effects of caregiver stressors (daily care bother, behavioral bother, and burden) on caregiver desire to institutionalize a patient with dementia. Overall, PHB was positively related to caregiver desire to institutionalize their care recipients. Specifically, PHB was found to mediate the relationship between caregiving stressors and DTI in the Caucasian and Latino groups, whereas only the mediation effect of EC was significant in the African American group. Caregivers' perceptions of quality of care helped explain their desire to institutionalize their care recipients with dementia. Including assessment of EC and PHB in clinical and social service settings is recommended for all ethnic groups. Interventions should facilitate EC behaviors among African American caregivers and address concerns of PHBs in Caucasian and Latino caregivers.

Effect of animal-assisted activity on balance and quality of life in home-dwelling persons with dementia.

PubMed

Olsen, Christine; Pedersen, Ingeborg; Bergland, Astrid; Enders-Slegers, Marie-José; Ihlebæk, Camilla

2016-01-01

Purpose of the study was to examine if animal-assisted activity with a dog (AAA) in home-dwelling persons with dementia (PWDs) attending day-care centers would have an effect on factors related to risk of fall accidents, with balance (Berg balance scale) and quality of life (Quality of Life in Late-stage Dementia) as main outcome. The project was conducted as a prospective and cluster-randomized multicenter trial with a follow-up. 16 adapted day-care centers recruited respectively 42 (intervention group) and 38 (control group with treatment as usual) home-dwelling PWDs. The intervention consisted of 30 min sessions with AAA led by a qualified dog handler twice a week for 12 weeks in groups of 3-7 participants. The significant positive effect on balance indicates that AAA might work as a multifactorial intervention in dementia care and have useful clinical implication by affecting risk of fall. ClinicalTrial.gov; NCT02008630. Copyright © 2016 Elsevier Inc. All rights reserved.

Quality Improvement in Skilled Nursing Facilities for Residents With Alzheimer's Disease.

PubMed

Farlow, Martin R; Borson, Soo; Connor, Stephen R; Grossberg, George T; Mittelman, Mary S

2016-03-01

This report describes a quality improvement continuing medical education activity designed to enhance the recognition and treatment of residents with Alzheimer's disease (AD) or other dementias in skilled-nursing facilities (SNFs). Charts were compared in 6 areas prior to and following (stages A and C) a live, faculty-led workshop (stage B). Four SNFs completed stages A (n = 67 residents) and B, and 3 SNFs completed stage C (n = 52 residents). All charts came from residents with AD or a diagnosis of dementia or dementia-like symptoms. The SNFs had >95% baseline performance in both the frequency of cognitive assessments and documented medication reviews. The percentage of residents who received a quality-of-life assessment and those who had a mental health care plan in place represent areas for improvement. As part of this activity, a toolkit was developed to help guide facilities and clinicians in instituting care improvements for residents with AD/dementia. © The Author(s) 2015.

Quality of life in dementia: do professional caregivers focus on the significant domains?

PubMed

Gerritsen, Debby L; Ettema, Teake P; Boelens, Ellen; Bos, Joke; Hoogeveen, Frans; de Lange, Jacomine; Meihuizen, Lucinda; Schölzel-Dorenbos, Carla J M; Dröes, Rose-Marie

2007-01-01

The domains of quality of life that are considered important by people with dementia and professional caregivers are not in agreement. This explorative study addresses the question, "To what degree do professional caregivers, in their daily working routine, focus on the quality-of-life domains that people with dementia consider essential?" Study participants were nursing assistants who work in 24-hour nursing home care and professionals who offer daytime activities. Three hundred and seventy-four caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire. The caregivers reported to focus at least to some degree on most domains considered important by people with dementia. However, relatively little attention was paid to "financial situation" and "being useful/giving meaning to life." Professionals who offer daytime activities focused more than 24-hour care staff on "attachment," "enjoyment of activities," "sense of aesthetics," and "being useful/giving meaning to life."

Strategies to support engagement and continuity of activity during mealtimes for families living with dementia; a qualitative study.

PubMed

Keller, Heather H; Martin, Lori Schindel; Dupuis, Sherry; Reimer, Holly; Genoe, Rebecca

2015-10-09

Mealtimes are an essential part of living and quality of life for everyone, including persons living with dementia. A longitudinal qualitative study provided understanding of the meaning of mealtimes for persons with dementia and their family care partners. Strategies were specifically described by families to support meaningful mealtimes. The purpose of this manuscript is to describe the strategies devised and used by these families living with dementia. A longitudinal qualitative study was undertaken to explore the meaning and experience of mealtimes for families living with dementia over a three-year period. 27 families [older person with dementia and at least one family care partner] were originally recruited from the community of South-Western Ontario. Individual and dyad interviews were conducted each year. Digitally recorded transcripts were analyzed using grounded theory methodology. Strategies were identified and categorized. Strategies to support quality mealtimes were devised by families as they adapted to their evolving lives. General strategies such as living in the moment, as well as strategies specific to maintaining social engagement and continuity of mealtime activities were reported. In addition to nutritional benefit, family mealtimes provide important opportunities for persons with dementia and their family care partners to socially engage and continue meaningful roles. Strategies identified by participants provide a basis for further education and support to families living with dementia.

[Development and evaluation of a training program for nursing home professionals to improve communication in dementia care].

PubMed

Haberstroh, J; Neumeyer, K; Schmitz, B; Pantel, J

2009-04-01

The purpose of this study was to develop and evaluate a skill training aimed at increasing the social competence of caregivers of nursing home residents suffering from dementia. Herewith, the professional burden and occupational stress of the caregivers should be reduced and the quality of life of dementia patients should be increased. The contents of the training focused on problems and strategies in the communication with dementia patients and the communication with colleagues. The effectiveness of the intervention was tested in a controlled training study using a multiple control group design and process measurement. The participants of the trainings were 53 nursing home professionals, who were in daily contact with residents suffering from dementia. The results of the study verify effects for all relevant variables. The "social competence" of the caregivers increased and their "work stress" decreased while the "quality of life of dementia patients" increased. Therefore it can be concluded that training the social competence of nursing home professionals is a method to indirectly reduce their work stress and support dementia patients. The results of research in this program underline very clearly that the developed training is an effective option to improve the situation of dementia care in nursing homes. To make the intervention widely applicable we are currently developing a "multiplier program" in a follow-up project.

Effectiveness of person-centered care on people with dementia: a systematic review and meta-analysis.

PubMed

Kim, Sun Kyung; Park, Myonghwa

2017-01-01

Person-centered care is a holistic and integrative approach designed to maintain well-being and quality of life for people with dementia, and it includes the elements of care, the individual, the carers, and the family. A systematic literature review and meta-analysis were undertaken to investigate the effectiveness of person-centered care for people with dementia. Literature searches were undertaken using six databases including Medline, EMBASE, CINAHL, PsycINFO, Cochrane Database, and KoreaMed using the following keywords: cognition disorder, dementia, person-centered care, patient-centered care, client-centered care, relationship-centered care, and dementia care. The searches were limited to interventional studies written in English and Korean and included randomized controlled studies and noncontrolled studies for people with dementia living in any setting. Nineteen interventional studies, including 3,985 participants, were identified. Of these, 17 studies were from long-term care facilities and two studies were from homecare settings. The pooled data from randomized controlled studies favored person-centered care in reducing agitation, neuropsychiatric symptoms, and depression and improving the quality of life. Subgroup analysis identified greater effectiveness of person-centered care when implemented for people with less severe dementia. For agitation, short-term interventions had a greater effect (standardized mean difference [SMD]: -0.434; 95% conference interval [CI]: -0.701 to -0.166) than long-term interventions (SMD: -0.098; 95% CI: -0.190 to 0.007). Individualized activities resulted in a significantly greater beneficial effect than standard care (SMD: 0.513; 95% CI: -0.994 to -0.032). However, long-term, staff education, and cultural change interventions had a greater effect on improving the quality of life for people with dementia (SMD: 0.191; 95% CI: 0.079 to 0.302). This systematic review and meta-analysis provided evidence for person-centered care in clinical practice for people with dementia. Person-centered care interventions were shown to reduce agitation, neuropsychiatric symptoms, and depression and to improve the quality of life. Person-centered care interventions can effectively reduce agitation for a short term using intensive and activity-based intervention. However, an educational strategy that promotes learning and skill development of internal care staff is needed to enhance patient's quality of life and to ensure the sustainability of the effects of behavioral problems. The feasibility and effectiveness of the intervention, the severity of patient disease, and intervention type and duration should be considered as part of an intervention design.

Hearing and vision screening tools for long-term care residents with dementia: protocol for a scoping review

PubMed Central

McGilton, Katherine S; Höbler, Fiona; Campos, Jennifer; Dupuis, Kate; Labreche, Tammy; Guthrie, Dawn M; Jarry, Jonathan; Singh, Gurjit; Wittich, Walter

2016-01-01

Introduction Hearing and vision loss among long-term care (LTC) residents with dementia frequently goes unnoticed and untreated. Despite negative consequences for these residents, there is little information available about their sensory abilities and care assessments and practices seldom take these abilities or accessibility needs into account. Without adequate knowledge regarding such sensory loss, it is difficult for LTC staff to determine the level of an individual's residual basic competence for communication and independent functioning. We will conduct a scoping review to identify the screening measures used in research and clinical contexts that test hearing and vision in adults aged over 65 years with dementia, aiming to: (1) provide an overview of hearing and vision screening in older adults with dementia; and (2) evaluate the sensibility of the screening tools. Methods and analysis This scoping review will be conducted using the framework by Arksey and O'Malley and furthered by methodological enhancements from cited researchers. We will conduct electronic database searches in CENTRAL, CINAHL, EMBASE, MEDLINE and PsycINFO. We will also carry out a ‘grey literature’ search for studies or materials not formally published, both online and through interview discussions with healthcare professionals and research clinicians working in the field. Our aim is to find new and existing hearing and vision screening measures used in research and by clinical professionals of optometry and audiology. Abstracts will be independently reviewed twice for acceptance by a multidisciplinary team of researchers and research clinicians. Ethics and dissemination This review will inform health professionals working with this growing population. With the review findings, we aim to develop a toolkit and an algorithmic process to select the most appropriate hearing and vision screening assessments for LTC residents with dementia that will facilitate accurate testing and can inform care planning, thereby improving residents’ quality of life. PMID:27466242

Hearing and vision screening tools for long-term care residents with dementia: protocol for a scoping review.

PubMed

McGilton, Katherine S; Höbler, Fiona; Campos, Jennifer; Dupuis, Kate; Labreche, Tammy; Guthrie, Dawn M; Jarry, Jonathan; Singh, Gurjit; Wittich, Walter

2016-07-26

Hearing and vision loss among long-term care (LTC) residents with dementia frequently goes unnoticed and untreated. Despite negative consequences for these residents, there is little information available about their sensory abilities and care assessments and practices seldom take these abilities or accessibility needs into account. Without adequate knowledge regarding such sensory loss, it is difficult for LTC staff to determine the level of an individual's residual basic competence for communication and independent functioning. We will conduct a scoping review to identify the screening measures used in research and clinical contexts that test hearing and vision in adults aged over 65 years with dementia, aiming to: (1) provide an overview of hearing and vision screening in older adults with dementia; and (2) evaluate the sensibility of the screening tools. This scoping review will be conducted using the framework by Arksey and O'Malley and furthered by methodological enhancements from cited researchers. We will conduct electronic database searches in CENTRAL, CINAHL, EMBASE, MEDLINE and PsycINFO. We will also carry out a 'grey literature' search for studies or materials not formally published, both online and through interview discussions with healthcare professionals and research clinicians working in the field. Our aim is to find new and existing hearing and vision screening measures used in research and by clinical professionals of optometry and audiology. Abstracts will be independently reviewed twice for acceptance by a multidisciplinary team of researchers and research clinicians. This review will inform health professionals working with this growing population. With the review findings, we aim to develop a toolkit and an algorithmic process to select the most appropriate hearing and vision screening assessments for LTC residents with dementia that will facilitate accurate testing and can inform care planning, thereby improving residents' quality of life. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Palliative care in advanced dementia.

PubMed

Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth

2014-08-01

Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. Copyright © 2014 Elsevier Inc. All rights reserved.

Communicating with Patients Who Have Advanced Dementia: Training Nurse Aide Students

ERIC Educational Resources Information Center

Beer, Laura E.; Hutchinson, Susan R.; Skala-Cordes, Kristine K.

2012-01-01

The increase of dementia in older adults is changing how medical care is delivered. Recognizing symptoms of pain, managing behaviors, and providing quality of life for people who have advanced dementia requires a new skill set for caregivers. Researchers in this study targeted nurse aide students to test an educational module's effect on students'…

Dementia Prevention: optimizing the use of observational data for personal, clinical, and public health decision-making.

PubMed

Dacks, Penny A; Andrieu, Sandrine; Blacker, Deborah; Carman, Aaron J; Green, Allan M; Grodstein, Francine; Henderson, Victor W; James, Bryan D; Lane, Rachel F; Lau, Joseph; Lin, Pei-Jung; Reeves, Barnaby C; Shah, Raj C; Vellas, Bruno; Yaffe, Kristine; Yurko-Mauro, Karin; Shineman, Diana W; Bennett, David A; Fillit, Howard M

2014-02-01

Worldwide, over 35 million people suffer from Alzheimer's disease and related dementias. This number is expected to triple over the next 40 years. How can we improve the evidence supporting strategies to reduce the rate of dementia in future generations? The risk of dementia is likely influenced by modifiable factors such as exercise, cognitive activity, and the clinical management of diabetes and hypertension. However, the quality of evidence is limited and it remains unclear whether specific interventions to reduce these modifiable risk factors can, in turn, reduce the risk of dementia. Although randomized controlled trials are the gold-standard for causality, the majority of evidence for long-term dementia prevention derives from, and will likely continue to derive from, observational studies. Although observational research has some unavoidable limitations, its utility for dementia prevention might be improved by, for example, better distinction between confirmatory and exploratory research, higher reporting standards, investment in effectiveness research enabled by increased data-pooling, and standardized exposure and outcome measures. Informed decision-making by the general public on low-risk health choices that could have broad potential benefits could be enabled by internet-based tools and decision-aids to communicate the evidence, its quality, and the estimated magnitude of effect.

Cost-effectiveness of post-diagnosis treatment in dementia coordinated by Multidisciplinary Memory Clinics in comparison to treatment coordinated by general practitioners: an example of a pragmatic trial.

PubMed

Meeuwsen, E J; German, P; Melis, R J F; Adang, E M; Golüke-Willemse, G A; Krabbe, P F; de Leest, B J; van Raak, F H J M; Schölzel-Dorenbos, C J M; Visser, M C; Wolfs, C A; Vliek, S; Rikkert, M G M Olde

2009-03-01

With the rising number of dementia patients with associated costs and the recognition that there is room for improvement in the provision of dementia care, the question arises on how to efficiently provide high quality dementia care. To describe the design of a study to determine multidisciplinary memory clinics' (MMC) effectiveness and cost-effectiveness in post-diagnosis treatment and care-coordination of dementia patients and their caregivers compared to the post-diagnosis treatment and care-coordination by general practitioners (GP). Next, this article provides the theoretical background of pragmatic trials, often needed in complex interventions, with the AD- Euro study as an example of such a pragmatic approach in a clinical trial. The study is a pragmatic multicentre, randomised clinical trial with an economic evaluation alongside, which aims to recruit 220 independently living patients with a new dementia diagnosis and their informal caregivers. After baseline measurements, patient and caregiver are allocated to the treatment arm MMC or GP and are visited for follow up measurements at 6 and 12 months. Primary outcome measures are Health Related Quality of Life of the patient as rated by the caregiver using the Quality of Life in Alzheimer's Disease instrument (Qol-AD) and self-perceived caregiving burden of the informal caregiver measured using the Sense of Competence Questionnaire (SCQ). To establish cost-effectiveness a cost-utility analysis using utilities generated by the EuroQol instrument (EQ-5D) will be conducted from a societal perspective. Analyses will be done in an intention-to-treat fashion. The inclusion period started in January 2008 and will commence until at least December 2008. After finalising follow up the results of the study are expected to be available halfway through 2010. The study will provide an answer to whether follow-up of dementia patients can best be done in specialised outpatient memory clinics or in primary care settings with regard to quality and costs. It will enable decision making on how to provide good and efficient health care services in dementia. ClinicalTrials.gov Identifier NCT00554047.

Developing a dementia-specific health state classification system for a new preference-based instrument AD-5D.

PubMed

Nguyen, Kim-Huong; Mulhern, Brendan; Kularatna, Sanjeewa; Byrnes, Joshua; Moyle, Wendy; Comans, Tracy

2017-01-25

With an ageing population, the number of people with dementia is rising. The economic impact on the health care system is considerable and new treatment methods and approaches to dementia care must be cost effective. Economic evaluation requires valid patient reported outcome measures, and this study aims to develop a dementia-specific health state classification system based on the Quality of Life for Alzheimer's disease (QOL-AD) instrument (nursing home version). This classification system will subsequently be valued to generate a preference-based measure for use in the economic evaluation of interventions for people with dementia. We assessed the dimensionality of the QOL-AD to develop a new classification system. This was done using exploratory and confirmatory factor analysis and further assessment of the structure of the measure to ensure coverage of the key areas of quality of life. Secondly, we used Rasch analysis to test the psychometric performance of the items, and select item(s) to describe each dimension. This was done on 13 items of the QOL-AD (excluding two general health items) using a sample of 284 residents living in long-term care facilities in Australia who had a diagnosis of dementia. A five dimension classification system is proposed resulting from the three factor structure (defined as 'interpersonal environment', 'physical health' and 'self-functioning') derived from the factor analysis and two factors ('memory' and 'mood') from the accompanying review. For the first three dimensions, Rasch analysis selected three questions of the QOL-AD ('living situation', 'physical health', and 'do fun things') with memory and mood questions representing their own dimensions. The resulting classification system (AD-5D) includes many of the health-related quality of life dimensions considered important to people with dementia, including mood, global function and skill in daily living. The development of the AD-5D classification system is an important step in the future application of the widely used QOL-AD in economic evaluations. Future valuation studies will enable this tool to be used to calculate quality adjusted life years to evaluate treatments and interventions for people diagnosed with mild to moderate dementia.

Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial

PubMed Central

2017-01-01

Background Palliative care planning for nursing home residents with advanced dementia is often suboptimal. This study compared effects of facilitated case conferencing (FCC) with usual care (UC) on end-of-life care. Methods A two arm parallel cluster randomised controlled trial was conducted. The sample included people with advanced dementia from 20 Australian nursing homes and their families and professional caregivers. In each intervention nursing home (n = 10), Palliative Care Planning Coordinators (PCPCs) facilitated family case conferences and trained staff in person-centred palliative care for 16 hours per week over 18 months. The primary outcome was family-rated quality of end-of-life care (End-of-Life Dementia [EOLD] Scales). Secondary outcomes included nurse-rated EOLD scales, resident quality of life (Quality of Life in Late-stage Dementia [QUALID]) and quality of care over the last month of life (pharmacological/non-pharmacological palliative strategies, hospitalization or inappropriate interventions). Results Two-hundred-eighty-six people with advanced dementia took part but only 131 died (64 in UC and 67 in FCC which was fewer than anticipated), rendering the primary analysis under-powered with no group effect seen in EOLD scales. Significant differences in pharmacological (P < 0.01) and non-pharmacological (P < 0.05) palliative management in last month of life were seen. Intercurrent illness was associated with lower family-rated EOLD Satisfaction with Care (coefficient 2.97, P < 0.05) and lower staff-rated EOLD Comfort Assessment with Dying (coefficient 4.37, P < 0.01). Per protocol analyses showed positive relationships between EOLD and staff hours to bed ratios, proportion of residents with dementia and staff attitudes. Conclusion FCC facilitates a palliative approach to care. Future trials of case conferencing should consider outcomes and processes regarding decision making and planning for anticipated events and acute illness. Trial registration Australian New Zealand Clinical Trial Registry ACTRN12612001164886 PMID:28786995

Quality dementia care: Prerequisites and relational ethics among multicultural healthcare providers.

PubMed

Sellevold, Gerd Sylvi; Egede-Nissen, Veslemøy; Jakobsen, Rita; Sørlie, Venke

2017-01-01

Many nursing homes appear as multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Furthermore, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves. The aim of this study is to illuminate multi-ethnic healthcare providers' lived experiences of their own working relationship, and its importance to quality care for people with dementia. The study is part of a greater participatory action research project: 'Hospice values in the care for persons with dementia'. The data material consists of extensive notes from seminars, project meetings and dialogue-based teaching. The text material was subjected to phenomenological-hermeneutical interpretation. Participants and research context: Participants in the project were healthcare providers working in a nursing home unit. The participants came from 15 different countries, had different formal qualifications, varied backgrounds and ethnic origins. Ethical considerations: The study is approved by the Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services. The results show that good working relationships, characterized by understanding each other's vulnerability and willingness to learn from each other through shared experiences, are prerequisites for quality care. The healthcare providers further described ethical challenges as uncertainty and different understandings. The results are discussed in the light of Lögstrup's relational philosophy of ethics and the concepts of vulnerability, ethic responsibility, trust and openness of speech. The prerequisite for quality care for persons with dementia in a multicultural working environment is to create arenas for open discussions between the healthcare providers. Leadership is of great importance.

Different Cognitive Frailty Models and Health- and Cognitive-related Outcomes in Older Age: From Epidemiology to Prevention

PubMed Central

Panza, Francesco; Lozupone, Madia; Solfrizzi, Vincenzo; Sardone, Rodolfo; Dibello, Vittorio; Di Lena, Luca; D’Urso, Francesca; Stallone, Roberta; Petruzzi, Massimo; Giannelli, Gianluigi; Quaranta, Nicola; Bellomo, Antonello; Greco, Antonio; Daniele, Antonio; Seripa, Davide; Logroscino, Giancarlo

2018-01-01

Frailty, a critical intermediate status of the aging process that is at increased risk for negative health-related events, includes physical, cognitive, and psychosocial domains or phenotypes. Cognitive frailty is a condition recently defined by operationalized criteria describing coexisting physical frailty and mild cognitive impairment (MCI), with two proposed subtypes: potentially reversible cognitive frailty (physical frailty/MCI) and reversible cognitive frailty (physical frailty/pre-MCI subjective cognitive decline). In the present article, we reviewed the framework for the definition, different models, and the current epidemiology of cognitive frailty, also describing neurobiological mechanisms, and exploring the possible prevention of the cognitive frailty progression. Several studies suggested a relevant heterogeneity with prevalence estimates ranging 1.0–22.0% (10.7–22.0% in clinical-based settings and 1.0–4.4% in population-based settings). Cross-sectional and longitudinal population-based studies showed that different cognitive frailty models may be associated with increased risk of functional disability, worsened quality of life, hospitalization, mortality, incidence of dementia, vascular dementia, and neurocognitive disorders. The operationalization of clinical constructs based on cognitive impairment related to physical causes (physical frailty, motor function decline, or other physical factors) appears to be interesting for dementia secondary prevention given the increased risk for progression to dementia of these clinical entities. Multidomain interventions have the potential to be effective in preventing cognitive frailty. In the near future, we need to establish more reliable clinical and research criteria, using different operational definitions for frailty and cognitive impairment, and useful clinical, biological, and imaging markers to implement intervention programs targeted to improve frailty, so preventing also late-life cognitive disorders. PMID:29562543

Implementing the Namaste Care Program for residents with advanced dementia: exploring the perceptions of families and staff in UK care homes.

PubMed

Stacpoole, Min; Hockley, Jo; Thompsell, Amanda; Simard, Joyce; Volicer, Ladislav

2017-10-01

Increasing numbers of older people with advanced dementia are cared for in care homes. No cure is available, so research focused on improving quality of life and quality of care for people with dementia is needed to support them to live and die well. The Namaste Care programme is a multi-dimensional care program with sensory, psycho-social and spiritual components intended to enhance quality of life and quality of care for people with advanced dementia. The aim of the study was to establish whether the Namaste Care program can be implemented in UK care homes; and what effect Namaste Care has on the quality of life of residents with advanced dementia, their families and staff. This article explores the qualitative findings of the study, reporting the effect of the programme on the families of people with advanced dementia and care home staff, and presenting their perceptions of change in care. An organisational action research methodology was used. Focus groups and interviews were undertaken pre/post implementation of the Namaste Care program. The researcher kept a reflective diary recording data on the process of change. A comments book was available to staff and relatives in each care home. Data was analysed thematically within each care home and then across all care homes. Six care homes were recruited in south London: one withdrew before the study was underway. Of the five remaining care homes, four achieved a full Namaste Care program. One care home did not achieve the full program during the study, and another discontinued Namaste Care when the study ended. Every home experienced management disruption during the study. Namaste Care challenged normal routinised care for older people with advanced dementia. The characteristics of care uncovered before Namaste was implemented were: chaos and confusion, rushing around, lack of trust, and rewarding care. After the programme was implemented these perceptions were transformed, and themes of calmness, reaching out to each other, seeing the person, and, enhanced well-being, emerged. Namaste Care can enrich the quality of life of older people with advanced dementia in care homes. The program was welcomed by care home staff and families, and was achieved with only modest expenditure and no change in staffing levels. The positive impact on residents quality of life influenced the well-being of family carers. Care staff found the changes in care enjoyable and rewarding. Namaste Care was valued for the benefits seen in residents; the improvement in relationships; and the shift towards a person-centred, relationship-based culture of care brought about by introducing the program. Namaste Care deserves further exploration and investigation including a randomised controlled trial.

A cluster-randomised trial of staff education to improve the quality of life of people with dementia living in residential care: the DIRECT study.

PubMed

Beer, Christopher; Horner, Barbara; Flicker, Leon; Scherer, Samuel; Lautenschlager, Nicola T; Bretland, Nick; Flett, Penelope; Schaper, Frank; Almeida, Osvaldo P

2011-01-01

The Dementia In Residential care: EduCation intervention Trial (DIRECT) was conducted to determine if delivery of education designed to meet the perceived need of GPs and care staff improves the quality of life of participants with dementia living in residential care. This cluster-randomised controlled trial was conducted in 39 residential aged care facilities in the metropolitan area of Perth, Western Australia. 351 care facility residents aged 65 years and older with Mini-Mental State Examination ≤ 24, their GPs and facility staff participated. Flexible education designed to meet the perceived needs of learners was delivered to GPs and care facility staff in intervention groups. The primary outcome of the study was self-rated quality of life of participants with dementia, measured using the QOL-Alzheimer's Disease Scale (QOL-AD) at 4 weeks and 6 months after the conclusion of the intervention. Analysis accounted for the effect of clustering by using multi-level regression analysis. Education of GPs or care facility staff did not affect the primary outcome at either 4 weeks or 6 months. In a post hoc analysis excluding facilities in which fewer than 50% of staff attended an education session, self-rated QOL-AD scores were 6.14 points (adjusted 95%CI 1.14, 11.15) higher at four-week follow-up among residents in facilities randomly assigned to the education intervention. The education intervention directed at care facilities or GPs did not improve the quality of life ratings of participants with dementia as a group. This may be explained by the poor adherence to the intervention programme, as participants with dementia living in facilities where staff participated at least minimally seemed to benefit. ANZCTR.org.au ACTRN12607000417482.

Comfort goal of care and end-of-life outcomes in dementia: A prospective study.

PubMed

van Soest-Poortvliet, Mirjam C; van der Steen, Jenny T; de Vet, Henrica C W; Hertogh, Cees M P M; Deliens, Luc; Onwuteaka-Philipsen, Bregje D

2015-06-01

Many people with dementia die in a nursing home. A comfort care goal may be beneficial. Little research has examined the relationship between care goals and outcome. To investigate whether family satisfaction with end-of-life care and quality of dying is associated with whether or not dementia patients have a comfort goal shortly after admission. Prospective data collection from 28 long-term care facilities (the Dutch End of Life in Dementia study). We included 148 patients who died after prospective follow-up. Main outcomes were family satisfaction (End-of-Life in Dementia-Satisfaction with Care scale; range: 10-40) and quality of dying (End-of-Life in Dementia-Comfort Assessment in Dying; range: 14-42). We performed generalized estimating equations regression analyses to analyze whether these outcomes are associated with a comfort goal established shortly after admission compared with another or no care goal as reported by the physician. Families of patients were more satisfied with end-of-life care when a comfort goal was established shortly after admission. We found this pattern only for patients who died within 6 months of admission (adjusted b: 4.5; confidence interval: 2.8, 6.3 vs -1.2; confidence interval: -3.0, 0.6 for longer stay). For quality of dying, no such association was found. We found that family satisfaction with care is related to a comfort care goal shortly after admission, but quality of dying did not. Establishing a comfort goal at an early stage may be important to the family. Advance care planning interventions should be studied for their effects on patient and family outcome. © The Author(s) 2015.

Assistive technologies to address capabilities of people with dementia: From research to practice.

PubMed

Kenigsberg, Paul-Ariel; Aquino, Jean-Pierre; Bérard, Alain; Brémond, François; Charras, Kevin; Dening, Tom; Droës, Rose-Marie; Gzil, Fabrice; Hicks, Ben; Innes, Anthea; Nguyen, Mai; Nygård, Louise; Pino, Maribel; Sacco, Guillaume; Salmon, Eric; van der Roest, Henriëtte; Villet, Hervé; Villez, Marion; Robert, Philippe; Manera, Valeria

2017-01-01

Assistive technologies became pervasive and virtually present in all our life domains. They can be either an enabler or an obstacle leading to social exclusion. The Fondation Médéric Alzheimer gathered international experts of dementia care, with backgrounds in biomedical, human and social sciences, to analyze how assistive technologies can address the capabilities of people with dementia, on the basis of their needs. Discussion covered the unmet needs of people with dementia, the domains of daily life activities where assistive technologies can provide help to people with dementia, the enabling and empowering impact of technology to improve their safety and wellbeing, barriers and limits of use, technology assessment, ethical and legal issues. The capability approach (possible freedom) appears particularly relevant in person-centered dementia care and technology development. The focus is not on the solution, rather on what the person can do with it: seeing dementia as disability, with technology as an enabler to promote capabilities of the person, provides a useful framework for both research and practice. This article summarizes how these concepts took momentum in professional practice and public policies in the past 15 years (2000-2015), discusses current issues in the design, development and economic model of assistive technologies for people with dementia, and covers how these technologies are being used and assessed.

Online Education Improves Dementia Knowledge: Evidence From an International Intervention.

PubMed

Annear, Michael J

2018-03-01

Dementia education disseminated through massive open online courses (MOOCs) has the potential to improve knowledge and care provision among health professionals and lay people. The potential learning effects of a dementia MOOC were assessed using a reliable and valid measure with international volunteers ( N = 3,649) who completed the measure before and after online education. Evaluation of learning effects suggests that the MOOC significantly increased dementia knowledge by at least 17% across six cohorts. Knowledge was improved by the MOOC in three ways: it significantly improved overall understanding of dementia for diverse cohorts; it reduced knowledge disparity within occupational and lay cohorts; and it reduced knowledge disparity across occupational and lay cohorts. The capacity of a dementia MOOC to significantly improve knowledge and reach a wide audience may lead to population-level improvements in understanding about dementia. This may foster improvements in treatment and quality of care for people with dementia.

Feasibility and Utility of Online Dementia Care Training for Hospital Staff

PubMed Central

Hobday, John V.; Gaugler, Joseph E.; Mittelman, Mary S.

2018-01-01

The current project tested the feasibility and utility of the CARES® Dementia-Friendly Hospital™ (CDFH) program, a 4-module, online training program for nursing assistants (NAs) and allied hospital workers (AHWs) who provide care to individuals with dementia. A single group pretest/posttest design was used for 25 hospital NAs/AHWs, and quantitative and qualitative data were collected to determine whether NAs’/AHWs’ knowledge of hospital-based dementia care significantly increased, and if CDFH was perceived as useful and acceptable. Dementia care knowledge increased significantly (p < 0.001). Open- and closed-ended data suggested that the delivery of online training to NAs/AHWs to enhance dementia care is feasible, useful, and efficient. Ongoing gaps in care exist for individuals with dementia in hospitals, and delivering robust training for NAs/AHWs may serve as an effective modality to enhance quality of dementia care in such settings. PMID:28152156

Development and testing of the Dementia Symptom Management at Home (DSM-H) program: An interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.

PubMed

Brody, Abraham A; Guan, Carrie; Cortes, Tara; Galvin, James E

2016-01-01

Home health care agencies are increasingly taking care of sicker, older patients with greater comorbidities. However, they are unequipped to appropriately manage these older adults, particular persons living with dementia (PLWD). We therefore developed the Dementia Symptom Management at Home (DSM-H) Program, a bundled interprofessional intervention, to improve the care confidence of providers, and quality of care delivered to PLWD and their caregivers. We implemented the DSM-H with 83 registered nurses, physical therapists, and occupational therapists. Overall, there was significant improvement in pain knowledge (5.9%) and confidence (26.5%), depression knowledge (14.8%) and confidence (36.1%), and neuropsychiatric symptom general knowledge (16.8%), intervention knowledge (20.9%), attitudes (3.4%) and confidence (27.1%) at a statistical significance of (P < .0001). We also found significant differences between disciplines. Overall, this disseminable program proved to be implementable and improve clinician's knowledge and confidence in caring for PLWD, with the potential to improve quality of care and quality of life, and decrease costs. Published by Elsevier Inc.

The effect and importance of physical activity on behavioural and psychological symptoms in people with dementia: A systematic mixed studies review.

PubMed

Junge, Tina; Ahler, Jonas; Knudsen, Hans K; Kristensen, Hanne K

2018-01-01

Background People with dementia may benefit from the effect of physical activity on behavioural and psychological symptoms of dementia. Qualitative synthesis of the importance of physical activity might complement and help clarify quantitative findings on this topic. The purpose of this systematic mixed studies review was to evaluate findings from both quantitative and qualitative methods about the effect and importance of physical activity on behavioural and psychological symptoms of dementia in people with dementia. Methods The systematic literature search was conducted in EMBASE, CINAHL, PubMed, PEDro and PsycINFO. Inclusion criteria were: people with a light to moderate degree of dementia, interventions including physical activity and outcomes focusing on behavioural and psychological symptoms of dementia or quality of life. To assess the methodological quality of the studies, the AMSTAR and GRADE checklists were applied for the quantitative studies and the CASP qualitative checklist for the qualitative studies. Results A small reduction in depression level and improved mood were seen in some quantitative studies of multi-component physical activity interventions, including walking. Due to high heterogeneity in the quantitative studies, a single summary of the effect of physical activity on behavioural and psychological symptoms of dementia should be interpreted with some caution. Across the qualitative studies, the common themes about the importance of physical activity were its 'socially rewarding' nature, the 'benefits of walking outdoors' and its contribution to 'maintaining self-hood'. Conclusion For people with dementia, there was a small, quantitative effect of multi-component physical activity including walking, on depression level and mood. People with dementia reported the importance of walking outdoors, experiencing the social rewards of physical activity in groups, as well as physical activity were a means toward maintaining self-hood.

Relationship between speaking English as a second language and agitation in people with dementia living in care homes: Results from the MARQUE (Managing Agitation and Raising Quality of life) English national care home survey.

PubMed

Cooper, C; Rapaport, P; Robertson, S; Marston, L; Barber, J; Manela, M; Livingston, G

2018-03-01

As not speaking English as a first language may lead to increased difficulties in communication with staff and other residents, we (1) tested our primary hypotheses that care home residents with dementia speaking English as a second language experience more agitation and overall neuropsychiatric symptoms, and (2) explored qualitatively how staff consider that residents' language, ethnicity, and culture might impact on how they manage agitation. We interviewed staff, residents with dementia, and their family carers from 86 care homes (2014-2015) about resident's neuropsychiatric symptoms, agitation, life quality, and dementia severity. We qualitatively interviewed 25 staff. Seventy-one out of 1420 (5%) of care home residents with dementia interviewed spoke English as a second language. After controlling for dementia severity, age, and sex, and accounting for care home and staff proxy clustering, speaking English as a second language compared with as a first language was associated with significantly higher Cohen-Mansfield Agitation Inventory (adjusted difference in means 8.3, 95% confidence interval 4.1 to 12.5) and Neuropsychiatric inventory scores (4.1, 0.65 to 7.5). Staff narratives described how linguistic and culturally isolating being in a care home where no residents or staff share your culture or language could be for people with dementia, and how this sometimes caused or worsened agitation. Considering a person with dementia's need to be understood when selecting a care home and developing technology resources to enable dementia-friendly translation services could be important strategies for reducing distress of people with dementia from minority ethnic groups who live in care homes. © 2017 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.

'Gotta be sit down and worked out together': views of Aboriginal caregivers and service providers on ways to improve dementia care for Aboriginal Australians.

PubMed

Smith, Kate; Flicker, Leon; Shadforth, Geraldine; Carroll, Emily; Ralph, Naomi; Atkinson, David; Lindeman, Melissa; Schaper, Frank; Lautenschlager, Nicola T; LoGiudice, Dina

2011-01-01

Dementia is five-fold more prevalent among Aboriginal than non-Aboriginal Australians. Despite this, the quality of care available to people living with dementia in remote Aboriginal communities is poor. The objective of this study was to determine ways to overcome factors affecting the successful delivery of services to Aboriginal people with dementia living in remote communities, and to their families and communities. This qualitative research took place in the Kimberley Region of Western Australia. Data collection occurred in three stages: (1) interviews with service providers to identify the services available; (2) interviews with the caregivers of Aboriginal people living with dementia and community-based care workers; and (3) focus groups with community representatives and community care staff. Each stage was concluded when no new themes emerged. At each stage the transcribed information was analysed and joint interpretation identified common themes. In total, 42 service providers, 31 caregivers and community-based care workers were interviewed and 3 focus groups were conducted. Obstacles to accessing quality care were mentioned and recommendations on ways to improve care were made. The key themes that emerged were caregiver role, perspectives of dementia, community and culturally-appropriate care, workforce, education and training, issues affecting remote communities and service issues. Detailed information on how each theme affects the successful delivery of dementia care is provided. These research findings indicate that people living with dementia and their caregivers in remote Aboriginal communities are struggling to cope. They are requesting and require better community care. Implementing a culturally safe model of dementia care for remote Aboriginal communities that encompasses the recommendations made and builds on the strengths of the communities could potentially deliver the required improvements to dementia care for this population.

The Maine Savvy Caregiver Project: translating an evidence-based dementia family caregiver program within the RE-AIM Framework.

PubMed

Samia, Linda W; Aboueissa, AbouEl-Makarim; Halloran, Jan; Hepburn, Kenneth

2014-01-01

This article presents findings of a 3-year Savvy Caregiver Program translational study designed with the RE-AIM framework to create a statewide sustainable infrastructure and improve dementia family caregiver outcomes in one rural state. The RE-AIM dimensions--reach, effectiveness, adoption, implementation and maintenance--were evaluated using mixed methods. The program reached 770 caregivers and 87.7% (n = 676) participated in the study with 60.5% (n = 409) residing in rural locations. Participants demonstrated improved confidence, fewer depressive symptoms, and better managed their situation. Trainer resources, partnerships, and adequate planning were essential for program adoption and sustainability. Implications for replication are discussed.

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

PubMed

Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve

2017-09-01

People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Animal-assisted intervention in dementia: effects on quality of life.

PubMed

Nordgren, Lena; Engström, Gabriella

2014-02-01

There is a need to develop nonpharmacological treatments and methods which can serve as alternatives or complements to medications in dementia care. Previous research indicates that animal-assisted intervention (AAI) can be beneficial. The purpose of the present pilot project was to evaluate effects of AAI on quality of life (QoL) in people with dementia in four Swedish nursing homes. A pretest/posttest research design was used. Twenty people (12 women, 8 men; aged 58 to 88) were included. Nine people completed the intervention which comprised 10 training sessions with a certified therapy dog team. QoL improved in the expected direction after the intervention (p = .035). Even though the effects of AAI may not be discernible over longer periods of time, there are still immediate effects which can promote better QoL for people living with dementia diseases.

Art museum-based intervention to promote emotional well-being and improve quality of life in people with dementia: The ARTEMIS project.

PubMed

Schall, Arthur; Tesky, Valentina A; Adams, Ann-Katrin; Pantel, Johannes

2017-01-01

ARTEMIS (ART Encounters: Museum Intervention Study) is an art-based intervention designed especially for people with dementia and their care partners that involves a combination of museum visits and artistic activity. This paper reports the results of a randomized wait-list controlled study on the influence of the ARTEMIS intervention on the emotional state, well-being, and quality of life of dementia patients. People with mild-to-moderate dementia (n = 44) and their care partners (n = 44) visited the Frankfurt Städel Museum once a week on six pre-arranged occasions. The intervention consisted of six different guided art tours (60 minutes), followed by art-making in the studio (60 minutes). Independent museum visits served as a control condition. A mixed-methods design was used to assess several outcomes including cognitive status, emotional well-being, self-rated aspects of quality of life, and subjective evaluations by informal caregivers. In a pre-post-assessment, we found significant improvements in participants' self-rated quality of life (t = -3.15, p < .05). In a situational assessment of emotional well-being immediately before and after each of the museum sessions, we were able to demonstrate statistically significant positive changes with medium effect sizes (dcorr = .74-.77). Furthermore, the total Neuropsychiatric Inventory score as well as the affective (depressed mood and anxiety) and apathy subscales were significantly lower after the ARTEMIS intervention (tNPI total = 2.43; tNPI affective = 2.24; tNPI apathy = 2.52; p < .05). The results show that art museum-based art interventions are able to improve the subjective well-being, mood, and quality of life in people with dementia. This promising psychosocial approach deserves further attention in future studies and consideration in community-based dementia care programs.

Comparison of Online Dementia Information in Chinese and in English Languages

PubMed Central

Tsiang, John T

2017-01-01

Introduction There is a deficit of avenues for obtaining dementia information in the Asian American community. This study aims to compare the content and quality differences between websites providing information on dementia as found by a Google search conducted both in simplified Chinese characters and in English. Methods A Google search was performed for the phrase “dementia” in simplified Chinese characters and in English. The resultant websites were categorized by whether they were commercial in nature, the type of website, and whether the website provided an explanation of dementia signs and symptoms. The quality of the websites was assessed via readability and the Health on the Net Code of Conduct (HONcode). Chi-squared analyses were performed to establish differences between the English and simplified Chinese results. Results The simplified Chinese search websites were more likely to be commercial (p=0.045) and were more likely to not meet HONcode standards (p=0.008). No statistical significance was observed between the types of websites (p=0.127), the prevalence of signs and symptom explanations (p=0.073), and the readability of the website (p=0.151). Conclusion The quality of websites obtained from the simplified Chinese character Google search was lower than those obtained from searches using the English language. Given the limited sources of language and culturally appropriate information on dementia, improvement of Internet resources may help to improve health outcomes of dementia patients in the Asian American population. PMID:29308336

Measuring the quality of life and well-being of people with dementia: A review of observational measures.

PubMed

Algar, Katherine; Woods, Robert T; Windle, Gill

2016-07-01

The dynamic nature of psychosocial interventions implies that trying to measure their effects using standardised clinical trial measures may not capture their full effects. Rich and valuable data during the sessions may be missed by using standard quality of life questionnaires. This paper compares observational measures in the context of recording the well-being of a person with dementia during and outside of a visual arts intervention. A literature search was conducted using systematic principles of searching, screening and retrieval to identify peer-reviewed English language evaluations of research projects using observational measures with people with dementia. Psychometric properties, strengths and weaknesses of 11 observational tools are reviewed in order to identify the most appropriate one for evaluating a visual art intervention for people with dementia. This review supports the Greater Cincinnati Chapter Well-Being Observation Tool as an appropriate measure to evaluate a visual art programme for people with dementia. The results of this review will help researchers plan projects to show the full range of effects for people with dementia for taking part in art sessions. © The Author(s) 2014.

Marital relationship quality in early-stage dementia: perspectives from people with dementia and their spouses.

PubMed

Clare, Linda; Nelis, Sharon M; Whitaker, Christopher J; Martyr, Anthony; Markova, Ivana S; Roth, Ilona; Woods, Robert T; Morris, Robin G

2012-01-01

Spouse caregivers of people with dementia (PwD) report relatively poor marital relationship quality (RQ), but few studies have obtained the perspective of the PwD, examined discrepancies between spouses, or considered changes in RQ over time. This study explored caregiver and PwD perceptions of RQ, identified associated factors, and examined changes over an 18-month period. Participants were 54 couples where one spouse had early-stage dementia and 54 were control couples. RQ was assessed with the Positive Affect Index. Measures of mood, stress, and quality of life (QoL) were also administered. The clinical couples were followed up after 9 and 18 months. Caregivers gave significantly lower RQ ratings than controls. PwD ratings did not differ significantly from those of caregivers or controls. Dyadic discrepancies were significantly greater in the clinical than in the control group. Caregiver ratings were associated with stress, whereas PwD ratings were associated with depression and QoL. Discrepancies were associated with caregiver stress and with PwD mood, QoL, and age. Caregiver ratings declined significantly over time; PwD ratings did not decline significantly, but showed different trends for men and women. It is important to consider RQ when considering how to support couples where one partner has early-stage dementia.

Behavioural and psychological symptoms in dementia and the challenges for family carers: systematic review

PubMed Central

Feast, Alexandra; Orrell, Martin; Charlesworth, Georgina; Melunsky, Nina; Poland, Fiona; Moniz-Cook, Esme

2016-01-01

Background Tailored psychosocial interventions can help families to manage behavioural and psychological symptoms in dementia (BPSD), but carer responses to their relative's behaviours contribute to the success of support programmes. Aims To understand why some family carers have difficulty in dealing with BPSD, in order to improve the quality of personalised care that is offered. Method A systematic review and meta-ethnographic synthesis was conducted of high-quality quantitative and qualitative studies between 1980 and 2012. Results We identified 25 high-quality studies and two main reasons for behaviours being reported as challenging by family carers: changes in communication and relationships, resulting in ‘feeling bereft’; and perceptions of transgressions against social norms associated with ‘misunderstandings about behaviour’ in the relative with dementia. The underlying belief that their relative had lost, or would inevitably lose, their identity to dementia was a fundamental reason why family carers experienced behaviour as challenging. Conclusions Family carers' perceptions of BPSD as challenging are associated with a sense of a declining relationship, transgressions against social norms and underlying beliefs that people with dementia inevitably lose their ‘personhood’. Interventions for the management of challenging behaviour in family settings should acknowledge unmet psychological need in family carers. PMID:26989095

Principal component analysis of the Norwegian version of the quality of life in late-stage dementia scale.

PubMed

Mjørud, Marit; Kirkevold, Marit; Røsvik, Janne; Engedal, Knut

2014-01-01

To investigate which factors the Quality of Life in Late-Stage Dementia (QUALID) scale holds when used among people with dementia (pwd) in nursing homes and to find out how the symptom load varies across the different severity levels of dementia. We included 661 pwd [mean age ± SD, 85.3 ± 8.6 years; 71.4% women]. The QUALID and the Clinical Dementia Rating (CDR) scale were applied. A principal component analysis (PCA) with varimax rotation and Kaiser normalization was applied to test the factor structure. Nonparametric analyses were applied to examine differences of symptom load across the three CDR groups. The mean QUALID score was 21.5 (±7.1), and the CDR scores of the three groups were 1 in 22.5%, 2 in 33.6% and 3 in 43.9%. The results of the statistical measures employed were the following: Crohnbach's α of QUALID, 0.74; Bartlett's test of sphericity, p <0.001; the Kaiser-Meyer-Olkin measure, 0.77. The PCA analysis resulted in three components accounting for 53% of the variance. The first component was 'tension' ('facial expression of discomfort', 'appears physically uncomfortable', 'verbalization suggests discomfort', 'being irritable and aggressive', 'appears calm', Crohnbach's α = 0.69), the second was 'well-being' ('smiles', 'enjoys eating', 'enjoys touching/being touched', 'enjoys social interaction', Crohnbach's α = 0.62) and the third was 'sadness' ('appears sad', 'cries', 'facial expression of discomfort', Crohnbach's α 0.65). The mean score on the components 'tension' and 'well-being' increased significantly with increasing severity levels of dementia. Three components of quality of life (qol) were identified. Qol decreased with increasing severity of dementia. © 2013 S. Karger AG, Basel.

Dying with dementia: symptom burden, quality of care, and place of death.

PubMed

Pinzon, Luis Carlos Escobar; Claus, Matthias; Perrar, Klaus Maria; Zepf, Kirsten Isabel; Letzel, Stephan; Weber, Martin

2013-03-01

No detailed information has been available until now about the care setting, circumstances and place of death, symptom burden, and quality of care of persons with end-stage dementia in Germany. This cross-sectional study is based on a random sample of 5000 persons who died in the period from 25 May to 24 August 2008 in the German federal state of Rhineland-Palatinate. Their surviving relatives were contacted and asked to participate in a questionnaire survey. Data were obtained in this way for 310 persons with dementia and 931 persons without dementia. 42.4% of the persons with dementia died at home. Most patients and their relatives preferred death at home to death anywhere else (94.8% of patients, 77.5% of relatives). Persons living with at least one relative were more likely to die at home (adjusted odds ratio [aOR] 4.69, 95% confidence interval [CI] 2.71-8.11). According to information supplied by the relatives, the overwhelming majority of patients suffered, two days before death, from moderate to severe weakness (94.9%), fatigue (94.4%), disorientation/confusion (86.9%), and appetite loss (86.4%). Other common symptoms were anxiety (61.0%), tension (59.9%), dyspnea (56.7%), and pain (52.5%). The relatives were critical of the quality of care on standard hospital wards, citing the limited temporal availability of staff and limited emotional support. These data indicate the high symptom burden of persons with dementia in Germany at the end of their lives. They underscore the need for proper palliative care in all of the settings where persons with dementia die. Specialized in- and outpatient palliative care should not be offered only to patients with cancer, but should rather be made available to all who need it.

Evaluating the capabilities model of dementia care: a non-randomized controlled trial exploring resident quality of life and care staff attitudes and experiences.

PubMed

Moyle, Wendy; Venturato, Lorraine; Cooke, Marie; Murfield, Jenny; Griffiths, Susan; Hughes, Julian; Wolf, Nathan

2016-07-01

This 12 month, Australian study sought to compare the Capabilities Model of Dementia Care (CMDC) with usual long-term care (LTC), in terms of (1) the effectiveness of the CMDC in assisting care staff to improve Quality Of Life (QOL) for older people with dementia; and (2) whether implementation of the CMDC improved staff attitudes towards, and experiences of working and caring for the person with dementia. A single blind, non-randomized controlled trial design, involving CMDC intervention group (three facilities) and a comparison usual LTC practice control group (one facility), was conducted from August 2010 to September 2011. Eighty-one staff members and 48 family members of a person with dementia were recruited from these four LTC facilities. At baseline, 6 and 12 months, staff completed a modified Staff Experiences of Working with Demented Residents questionnaire (SEWDR), and families completed the Quality of Life - Alzheimer's Disease questionnaire (QOL-AD). LTC staff in the usual care group reported significantly lower SEWDR scores (i.e. less work satisfaction) than those in the CMDC intervention group at 12 months (p = 0.005). Similarly, family members in the comparison group reported significantly lower levels of perceived QOL for their relative with dementia (QOL-AD scores) than their counterparts in the CMDC intervention group at 12 months (p = 0.012). Although the study has a number of limitations the CMDC appears to be an effective model of dementia care - more so than usual LTC practice. The CMDC requires further evaluation with participants from a diverse range of LTC facilities and stages of cognitive impairment.

Feasibility and Utility of Online Dementia Care Training for Hospital Staff: The CARES® Dementia-Friendly Hospital™ Program.

PubMed

Hobday, John V; Gaugler, Joseph E; Mittelman, Mary S

2017-03-01

The current project tested the feasibility and utility of the CARES® Dementia-Friendly Hospital™ (CDFH) program, a 4-module, online training program for nursing assistants (NAs) and allied hospital workers (AHWs) who provide care to individuals with dementia. A single group pretest/posttest design was used for 25 hospital NAs/AHWs, and quantitative and qualitative data were collected to determine whether NAs'/AHWs' knowledge of hospital-based dementia care significantly increased, and if CDFH was perceived as useful and acceptable. Dementia care knowledge increased significantly (p < 0.001). Open- and closed-ended data suggested that the delivery of online training to NAs/AHWs to enhance dementia care is feasible, useful, and efficient. Ongoing gaps in care exist for individuals with dementia in hospitals, and delivering robust training for NAs/AHWs may serve as an effective modality to enhance quality of dementia care in such settings. [Res Gerontol Nurs. 2017; 10(2):58-65.]. Copyright 2017, SLACK Incorporated.

Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia.

PubMed

Martyr, Anthony; Nelis, Sharon M; Quinn, Catherine; Wu, Yu-Tzu; Lamont, Ruth A; Henderson, Catherine; Clarke, Rachel; Hindle, John V; Thom, Jeanette M; Jones, Ian Rees; Morris, Robin G; Rusted, Jennifer M; Victor, Christina R; Clare, Linda

2018-05-08

Current policy emphasises the importance of 'living well' with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1-0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.

GPs' attitudes, awareness, and practice regarding early diagnosis of dementia

PubMed Central

Ahmad, Shamail; Orrell, Martin; Iliffe, Steve; Gracie, Antonia

2010-01-01

Background In primary care, the diagnosis of dementia is often delayed and the 2007 National Audit Office Report concluded action was needed to improve patient care and value for money. Aim To investigate the attitudes, awareness, and practice of GPs in England regarding early diagnosis and management of patients with dementia, and perceptions of local specialist services, to identify training or support needs. Design of study Secondary analysis of survey data that capture the above attitudes, awareness, and practice. Setting Online survey, targeting GP members of medeConnect. Method Survey data were obtained using an anonymised online self-completion questionnaire, and then analysed using standard data-analysis software. Results A total of 1011 GPs across the eight English regions responded. Older GPs were more confident in diagnosing and giving advice about dementia, but less likely to feel that early diagnosis was beneficial, and more likely to feel that patients with dementia can be a drain on resources with little positive outcome. Younger GPs were more positive and felt that much could be done to improve quality of life. Attitudes had no correlation with sex. GPs in general felt they had not had sufficient basic and post-qualifying training in dementia, and overall knowledge about dementia was low. Conclusion Much could be done to improve GPs' knowledge of dementia, and the confidence of older GPs could be an educational resource. However, greater experience may create scepticism about early diagnosis because of the perceived poor quality of specialist services. PMID:20849686

Short-term residential care for dementia patients: predictors for utilization and expected quality from a family caregiver's point of view.

PubMed

Donath, Carolin; Winkler, Angelika; Grässel, Elmar

2009-08-01

Short-term residential care (SRC) has proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors which influence its usage or the expectations of family caregivers regarding quality. In this paper we address the following questions: (i) which variables of the care situation, the caregivers and their attitudes act as predictors for the utilization of SRC facilities? (ii) What are the views of caregivers about the quality of SRC? The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in four regions of Germany. With a 20% response it was possible to analyze the quantitative and qualitative data from 404 and 254 family caregivers respectively. Predictors for utilization were evaluated using binary logistic regression analysis. The answers to questions of quality were evaluated using qualitative content analysis. Significant predictors for the utilization of SRC are the assessment of the helpfulness of SRC and the caregiver's knowledge of the accessibility of SRC facilities. Family caregivers who had already used SRC most frequently expressed the wish for "good care" in SRC facilities, followed by a program of suitable activities for dementia patients. In order to increase the rate of utilization, family caregivers must be convinced of the relevant advantages of using SRC facilities. The staff should be trained in caring for dementia patients and appropriate activities should be available.

A model for using the VIPS framework for person-centred care for persons with dementia in nursing homes: a qualitative evaluative study.

PubMed

Røsvik, Janne; Kirkevold, Marit; Engedal, Knut; Brooker, Dawn; Kirkevold, Øyvind

2011-09-01

The 'VIPS' framework sums up the elements in Kitwood's philosophy of person-centred care (PCC) for persons with dementia as values, individualised approach, the perspective of the person living with dementia and social environment. There are six indicators for each element. Aim.  To conduct an initial evaluation of a model aimed at facilitating the application of the VIPS framework. Qualitative evaluative study. A model was trialled in a 9-week pilot study in two nursing homes and evaluated in four focus groups using qualitative content analysis. Five themes emerged: (1) Legitimacy of the model was secured when central roles were held by nurses representing the majority of the staff; (2) The model facilitated the staff's use of their knowledge of PCC; (3) Support to the persons holding the internal facilitating roles in the model was needed; (4) The authority of the leading registered nurse in the ward was crucial to support the legitimacy of the model and (5) Form of organisation seemed to be of importance in how the model was experienced. The model worked best in wards organised with a leading registered nurse who could support an auxiliary nurse holding the facilitating function. © 2011 Blackwell Publishing Ltd.

Using Surface Table Computers to Promote the Well-Being of People with Dementia.

PubMed

Bejan, Alexander; Murko, Patrizia; Müller, Nadine; König, Peter; Kunze, Christophe

2017-01-01

As the demographic change progresses, dementia is going to become a prevalent condition in many countries. In order to keep the Quality of Life (QoL) of People with Dementia (PwD) on a steady level, Assistive Technologies (AT) implemented on table-sized Surface Computers (SC) that promote playful and/or reminiscence-triggering activities turn out to be valuable tools for dementia care. This article gives an overview over two similar multimedia-based AT systems implemented on Microsoft PixelSense SCs and field-tested in dementia care institutions. The observations indicate that both systems can trigger positive emotions and activities as well as memories.

Interprofessional education in the care of people diagnosed with dementia and their carers: a systematic review

PubMed Central

Jackson, Marcus; Pelone, Ferruccio; Reeves, Scott; Hassenkamp, Anne Marie; Emery, Claire; Titmarsh, Kumud; Greenwood, Nan

2016-01-01

Objectives This systematic review is linked to the multifaceted social, economic and personal challenges of dementia and the international recognition of the value of interprofessional education (IPE) and its influence on health and social care outcomes. This review therefore aimed to identify, describe and evaluate the impact of IPE interventions on health and social care practitioners (prequalification and postqualification) understanding of dementia, the quality of care for people with dementia and support for their carers. Methods Following PRISMA guidelines, 9 databases were searched (MEDLINE, EMBASE, The Cochrane Library, PsycINFO, CINAHL Plus, Applied Social Sciences Index and Abstracts, Healthcare Management Information Consortium, ERIC and British Education Index). Narrative analysis of the findings was undertaken. Design Systematic review. Results 6 studies meeting the inclusion criteria were identified. The majority of studies were conducted in North America. Participants in 4 studies were health and social care practitioners caring for people with dementia, whereas the remaining studies focused on training graduate or undergraduate students. Diverse IPE activities with varying content, delivery mode and duration were reported. Although some studies reported more positive attitudes to interprofessional working as a result of the interventions, none reported benefits to patients or carers. The quality of the included studies varied. Overall, the evidence for the reported outcomes was considered weak. Conclusions This review identified 6 studies describing IPE interventions intended to improve collaborative knowledge, skills, interprofessional practice and organisational awareness of dementia and dementia care. The small number of studies, their varied nature, scope and settings combined with poor quality of evidence limits our understanding of the effectiveness of IPE on the care and support of people with dementia and their carers. Further research is required to develop the evidence base and provide robust studies to inform IPE development. Trial registration number CRD42014015075. PMID:27531724

Interprofessional education in the care of people diagnosed with dementia and their carers: a systematic review.

PubMed

Jackson, Marcus; Pelone, Ferruccio; Reeves, Scott; Hassenkamp, Anne Marie; Emery, Claire; Titmarsh, Kumud; Greenwood, Nan

2016-08-16

This systematic review is linked to the multifaceted social, economic and personal challenges of dementia and the international recognition of the value of interprofessional education (IPE) and its influence on health and social care outcomes. This review therefore aimed to identify, describe and evaluate the impact of IPE interventions on health and social care practitioners (prequalification and postqualification) understanding of dementia, the quality of care for people with dementia and support for their carers. Following PRISMA guidelines, 9 databases were searched (MEDLINE, EMBASE, The Cochrane Library, PsycINFO, CINAHL Plus, Applied Social Sciences Index and Abstracts, Healthcare Management Information Consortium, ERIC and British Education Index). Narrative analysis of the findings was undertaken. Systematic review. 6 studies meeting the inclusion criteria were identified. The majority of studies were conducted in North America. Participants in 4 studies were health and social care practitioners caring for people with dementia, whereas the remaining studies focused on training graduate or undergraduate students. Diverse IPE activities with varying content, delivery mode and duration were reported. Although some studies reported more positive attitudes to interprofessional working as a result of the interventions, none reported benefits to patients or carers. The quality of the included studies varied. Overall, the evidence for the reported outcomes was considered weak. This review identified 6 studies describing IPE interventions intended to improve collaborative knowledge, skills, interprofessional practice and organisational awareness of dementia and dementia care. The small number of studies, their varied nature, scope and settings combined with poor quality of evidence limits our understanding of the effectiveness of IPE on the care and support of people with dementia and their carers. Further research is required to develop the evidence base and provide robust studies to inform IPE development. CRD42014015075. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Trends in diagnosis and treatment for people with dementia in the UK from 2005 to 2015: a longitudinal retrospective cohort study.

PubMed

Donegan, Katherine; Fox, Nick; Black, Nick; Livingston, Gill; Banerjee, Sube; Burns, Alistair

2017-03-01

The objectives of this study were to describe changes in the proportion of people diagnosed with dementia and the pharmacological treatments prescribed to them over a 10 year period from 2005 to 2015 at a time of UK policy strategies and prioritisation of dementia. We aimed to explore the potential impact of policy on dementia care. In this longitudinal retrospective cohort study, we included all patients registered at a Clinical Practice Research Datalink (CPRD) practice between July 1, 2005, and June 30, 2015, with a diagnosis of dementia defined using Read codes. The main outcomes were the number and proportion of acceptable patients, who met the CPRD threshold for data quality, in a GP practice defined by the CPRD as contributing up-to-standard data with a diagnosis of dementia and the number and proportion of these with a prescription for an antidementia or antipsychotic medication. We examined the prevalence of dementia diagnosis and prescribing by calendar quarter, and stratified by age, sex, and UK country (England, Scotland, Wales, or Northern Ireland). We investigated the use of antidementia drugs, alone and in combination, antipsychotics, antidepressants, anxiolytics, and hypnotics. The trend in the proportion of patients with a diagnosis of dementia, before and after the introduction of the UK National Dementia Strategy, was estimated using an interrupted time-series analysis. 8 966 224 patients were identified in the CPRD whose most recent registration period overlapped the study period. Of these, 128 249 (1·4%) had a diagnosis of dementia before the end of the study period. The proportion of people diagnosed with dementia in the UK doubled from 0·42% (19 635 of 4 640 290 participants) in 2005 to 0·82% (25 925 of 3 159 754 participants) in 2015 (χ 2 test for trend, p<0·0001), and the proportion of those who received antidementia medication increased from 15·0% (2942 of 19 635) to 36·3% (9406 of 25 925). The interrupted time-series analysis showed a significant acceleration in the rate of diagnosis of dementia after the introduction of the UK National Dementia Strategy (p<0·0001). There was a large reduction in antipsychotic drug prescription in dementia from 22·1% (4347 of 19 635) in 2005 to 11·4% (2943 of 25 925) by 2015. Over the 10 years studied, there is evidence of a sustained positive change in diagnosis rates of dementia and in the quality of drug treatment provided to those diagnosed. The prescription of antidementia drugs more than doubled and the prescription of potentially hazardous antipsychotics halved after the introduction of national dementia strategies. These data support the formulation and delivery of national policy to improve the quality of care for people with dementia. None. Copyright © 2017 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY license. Published by Elsevier Ltd.. All rights reserved.

Quality of life of residents with dementia in long-term care settings in the Netherlands and Belgium: design of a longitudinal comparative study in traditional nursing homes and small-scale living facilities

PubMed Central

2011-01-01

Background The increase in the number of people with dementia will lead to greater demand for residential care. Currently, large nursing homes are trying to transform their traditional care for residents with dementia to a more home-like approach, by developing small-scale living facilities. It is often assumed that small-scale living will improve the quality of life of residents with dementia. However, little scientific evidence is currently available to test this. The following research question is addressed in this study: Which (combination of) changes in elements affects (different dimensions of) the quality of life of elderly residents with dementia in long-term care settings over the course of one year? Methods/design A longitudinal comparative study in traditional and small-scale long-term care settings, which follows a quasi-experimental design, will be carried out in Belgium and the Netherlands. To answer the research question, a model has been developed which incorporates relevant elements influencing quality of life in long-term care settings. Validated instruments will be used to evaluate the role of these elements, divided into environmental characteristics (country, type of ward, group size and nursing staff); basic personal characteristics (age, sex, cognitive decline, weight and activities of daily living); behavioural characteristics (behavioural problems and depression); behavioural interventions (use of restraints and use of psychotropic medication); and social interaction (social engagement and visiting frequency of relatives). The main outcome measure for residents in the model is quality of life. Data are collected at baseline, after six and twelve months, from residents living in either small-scale or traditional care settings. Discussion The results of this study will provide an insight into the determinants of quality of life for people with dementia living in traditional and small-scale long-term care settings in Belgium and the Netherlands. Possible relevant strengths and weaknesses of the study are discussed in this article. Trial registration ISRCTN: ISRCTN23772945 PMID:21539731

Help seeking in older Asian people with dementia in Melbourne: using the Cultural Exchange Model to explore barriers and enablers.

PubMed

Haralambous, Betty; Dow, Briony; Tinney, Jean; Lin, Xiaoping; Blackberry, Irene; Rayner, Victoria; Lee, Sook-Meng; Vrantsidis, Freda; Lautenschlager, Nicola; Logiudice, Dina

2014-03-01

The prevalence of dementia is increasing in Australia. Limited research is available on access to Cognitive Dementia and Memory Services (CDAMS) for people with dementia from Culturally and Linguistically Diverse (CALD) communities. This study aimed to determine the barriers and enablers to accessing CDAMS for people with dementia and their families of Chinese and Vietnamese backgrounds. Consultations with community members, community workers and health professionals were conducted using the "Cultural Exchange Model" framework. For carers, barriers to accessing services included the complexity of the health system, lack of time, travel required to get to services, language barriers, interpreters and lack of knowledge of services. Similarly, community workers and health professionals identified language, interpreters, and community perceptions as key barriers to service access. Strategies to increase knowledge included providing information via radio, printed material and education in community group settings. The "Cultural Exchange Model" enabled engagement with and modification of the approaches to meet the needs of the targeted CALD communities.

Home is where the future is: The BrightFocus Foundation consensus panel on dementia care.

PubMed

Samus, Quincy M; Black, Betty Smith; Bovenkamp, Diane; Buckley, Michael; Callahan, Christopher; Davis, Karen; Gitlin, Laura N; Hodgson, Nancy; Johnston, Deirdre; Kales, Helen C; Karel, Michele; Kenney, John Jay; Ling, Shari M; Panchal, Maï; Reuland, Melissa; Willink, Amber; Lyketsos, Constantine G

2018-01-01

A national consensus panel was convened to develop recommendations on future directions for home-based dementia care (HBDC). The panel summarized advantages and challenges of shifting to HBDC as the nexus of care and developed consensus-based recommendations. The panel developed five core recommendations: (1) HBDC should be considered the nexus of new dementia models, from diagnosis to end of life in dementia; (2) new payment models are needed to support HBDC and reward integration of care; (3) a diverse new workforce that spans the care continuum should be prepared urgently; (4) new technologies to promote communication, monitoring/safety, and symptoms management must be tested, integrated, and deployed; and (5) targeted dissemination efforts for HBDC must be employed. HBDC represents a promising paradigm shift to improve care for those living with dementia and their family caregivers: these recommendations provide a framework to chart a course forward for HBDC. Copyright © 2017 the Alzheimer's Association. All rights reserved.

Neuropsychiatric symptoms as early manifestations of emergent dementia: Provisional diagnostic criteria for mild behavioral impairment

PubMed Central

Ismail, Zahinoor; Smith, Eric E.; Geda, Yonas; Sultzer, David; Brodaty, Henry; Smith, Gwenn; Agüera-Ortiz, Luis; Sweet, Rob; Miller, David; Lyketsos, Constantine G.

2015-01-01

Neuropsychiatric symptoms (NPS) are common in dementia and in predementia syndromes such as mild cognitive impairment (MCI). NPS in MCI confer a greater risk for conversion to dementia in comparison to MCI patients without NPS. NPS in older adults with normal cognition also confers a greater risk of cognitive decline in comparison to older adults without NPS. Mild behavioral impairment (MBI) has been proposed as a diagnostic construct aimed to identify patients with an increased risk of developing dementia, but who may or may not have cognitive symptoms. We propose criteria that include MCI in the MBI framework, in contrast to prior definitions of MBI. Although MBI and MCI can co-occur, we suggest that they are different and that both portend a higher risk of dementia. These MBI criteria extend the previous literature in this area and will serve as a template for validation of the MBI construct from epidemiologic, neurobiological, treatment, and prevention perspectives. PMID:26096665

Measuring the quality of life in mild to very severe dementia: testing the inter-rater and intra-rater reliability of the German version of the QUALIDEM.

PubMed

Dichter, Martin Nikolaus; Schwab, Christian G G; Meyer, Gabriele; Bartholomeyczik, Sabine; Dortmann, Olga; Halek, Margareta

2014-05-01

Quality of life (Qol) is an increasingly used outcome measure in dementia research. The QUALIDEM is a dementia-specific and proxy-rated Qol instrument. We aimed to determine the inter-rater and intra-rater reliability in residents with dementia in German nursing homes. The QUALIDEM consists of nine subscales that were applied to a sample of 108 people with mild to severe dementia and six consecutive subscales that were applied to a sample of 53 people with very severe dementia. The proxy raters were 49 registered nurses and nursing assistants. Inter-rater and intra-rater reliability scores were calculated on the subscale and item level. None of the QUALIDEM subscales showed strong inter-rater reliability based on the single-measure Intra-Class Correlation Coefficient (ICC) for absolute agreement ≥ 0.70. Based on the average-measure ICC for four raters, eight subscales for people with mild to severe dementia (care relationship, positive affect, negative affect, restless tense behavior, social relations, social isolation, feeling at home and having something to do) and five subscales for very severe dementia (care relationship, negative affect, restless tense behavior, social relations and social isolation) yielded a strong inter-rater agreement (ICC: 0.72-0.86). All of the QUALIDEM subscales, regardless of dementia severity, showed strong intra-rater agreement. The ICC values ranged between 0.70 and 0.79 for people with mild to severe dementia and between 0.75 and 0.87 for people with very severe dementia. This study demonstrated insufficient inter-rater reliability and sufficient intra-rater reliability for all subscales of both versions of the German QUALIDEM. The degree of inter-rater reliability can be improved by collaborative Qol rating by more than one nurse. The development of a measurement manual with accurate item definitions and a standardized education program for proxy raters is recommended.

Complex decision making in patients with dementia in an internal medicine department.

PubMed

Kabelka, Ladislav

2017-10-01

With the increase of polymorbidity, extending life expectancy and improving treatment options for chronic diseases, the care for dementia is moving into other areas of medicine. The length and quality of life with advanced dementia is directly dependent on the quality of medical and nursing care, early detection and treatment of complications, nutritional support and palliative care plan. Significant is also the support for family carers. The key coordinators of care for patients with dementia are general practitioners (GPs), geriatricians, psychiatrists, and an increasingly important role play internists. Case reports of patients admitted to an internal medicine department. Description of clinical experiences with caring on patients with dementia. In the internal departments of regional hospitals, there is a room for adjustment of the care plan, for comprehensive assessment of the patient and for making crucial decisions regarding nutrition, treatment of chronic diseases, consideration of previously expressed wishes in the context of the patient condition, and potential prognostic indicators. This assessment must result in a comprehensive documentation and communication with patients, and in the case of advanced dementia with their family members. The general internal medicine is very often the first place where the patient has a chance to hear about indication for palliative care. Without the availability of a multidisciplinary assessment, good communication and documentation, it is unrealistic to expect that the hospital would provide comprehensive care for patients with dementia.

Does physical activity prevent cognitive decline and dementia?: A systematic review and meta-analysis of longitudinal studies

PubMed Central

2014-01-01

Background By 2050, it has been estimated that approximately one-fifth of the population will be made up of older adults (aged ≥60 years). Old age often comes with cognitive decline and dementia. Physical activity may prevent cognitive decline and dementia. Methods We reviewed and synthesised prospective studies into physical activity and cognitive decline, and physical activity and dementia, published until January 2014. Forty-seven cohorts, derived from two previous systematic reviews and an updated database search, were used in the meta-analyses. Included participants were aged ≥40 years, in good health and/or randomly selected from the community. Studies were assessed for methodological quality. Results Twenty-one cohorts on physical activity and cognitive decline and twenty-six cohorts on physical activity and dementia were included. Meta-analysis, using the quality-effects model, suggests that participants with higher levels of physical activity, when compared to those with lower levels, are at reduced risk of cognitive decline, RR 0.65, 95% CI 0.55-0.76, and dementia, RR 0.86, 95% CI 0.76-0.97. Sensitivity analyses revealed a more conservative estimate of the impact of physical activity on cognitive decline and dementia for high quality studies, studies reporting effect sizes as ORs, greater number of adjustments (≥10), and longer follow-up time (≥10 years). When one heavily weighted study was excluded, physical activity was associated with an 18% reduction in the risk of dementia (RR 0.82; 0.73-0.91). Conclusions Longitudinal observational studies show an association between higher levels of physical activity and a reduced risk of cognitive decline and dementia. A case can be made for a causal interpretation. Future research should use objective measures of physical activity, adjust for the full range of confounders and have adequate follow-up length. Ideally, randomised controlled trials will be conducted. Regardless of any effect on cognition, physical activity should be encouraged, as it has been shown to be beneficial on numerous levels. PMID:24885250

[Application of spaced retrieval training on patients with dementia].

PubMed

Wu, Hua-Shan; Lin, Li-Chan

2012-10-01

Dementia causes semantic and episodic memory impairments that limit patients' activities of daily living (ADL) and increase caregiver burden. Spaced retrieval training uses repetitive retrieval to strengthen cognitive and motor skills intuitively in mild / moderate dementia patients who retain preserved implicit / non-declarative memory. This article describes and discusses the operative mechanism, influencing variables, and practical applications of spaced retrieval training. We hope this article increases professional understanding and application of this training approach to improve dementia patient ADL and improve quality of life for both caregivers and patients.

Measurement tools of resource use and quality of life in clinical trials for dementia or cognitive impairment interventions: protocol for a scoping review.

PubMed

Yang, Fan; Dawes, Piers; Leroi, Iracema; Gannon, Brenda

2017-01-26

Dementia and cognitive impairment could severely impact patients' life and bring heavy burden to patients, caregivers and societies. Some interventions are suggested for the older patients with these conditions to help them live well, but economic evaluation is needed to assess the cost-effectiveness of these interventions. Trial-based economic evaluation is an ideal method; however, little is known about the tools used to collect data of resource use and quality of life alongside the trials. Therefore, the aim of this review is to identify and describe the resource use and quality of life instruments in clinical trials of interventions for older patients with dementia or cognitive impairment. We will perform a search in main electronic databases (Ovid MEDLINE, PsycINFO, EMBASE, CINAHL, Cochrane Databases of Systematic Reviews, Web of Science and Scopus) using the key terms or their synonyms: older, dementia, cognitive impairment, cost, quality of life, intervention and tools. After removing duplicates, two independent reviewers will screen each entry for eligibility, initially by title and abstract, then by full-text. A hand search of the references of included articles and general search, e.g. Google Scholar, will also be conducted to identify potential relevant studies. All disagreements will be resolved by discussion or consultation with a third reviewer if necessary. Data analysis will be completed and reported in a narrative review. This review will identify the instruments used in clinical trials to collect resource use and quality of life data for dementia or cognitive impairment interventions. This will help to guide the study design of future trial-based economic evaluation of these interventions. PROSPERO CRD42016038495.

Alzheimer's and other dementias in Canada, 2011 to 2031: a microsimulation Population Health Modeling (POHEM) study of projected prevalence, health burden, health services, and caregiving use.

PubMed

Manuel, Douglas G; Garner, Rochelle; Finès, Philippe; Bancej, Christina; Flanagan, William; Tu, Karen; Reimer, Kim; Chambers, Larry W; Bernier, Julie

2016-01-01

Worldwide, there is concern that increases in the prevalence of dementia will result in large demands for caregivers and supportive services that will be challenging to address. Previous dementia projections have either been simple extrapolations of prevalence or macrosimulations based on dementia incidence. A population-based microsimulation model of Alzheimer's and related dementias (POHEM:Neurological) was created using Canadian demographic data, estimates of dementia incidence, health status (health-related quality of life and mortality risk), health care costs and informal caregiving use. Dementia prevalence and 12 other measures were projected to 2031. Between 2011 and 2031, there was a projected two-fold increase in the number of people living with dementia in Canada (1.6-fold increase in prevalence rate). By 2031, the projected informal (unpaid) caregiving for dementia in Canada was two billion hours per year, or 100 h per year per Canadian of working age. The projected increase in dementia prevalence was largely related to the expected increase in older Canadians, with projections sensitive to changes in the age of dementia onset.

"Music & Memory" and improved swallowing in advanced dementia.

PubMed

Cohen, Dan; Post, Stephen G; Lo, Angela; Lombardo, Robin; Pfeffer, Brandon

2018-01-01

Background Dysphagia and difficulty with eating affects a significant portion of individuals with advanced dementia. Such problems with oral intake can have serious health consequences including mealtime distress, dehydration and malnutrition, aspiration, reduced quality of life, and increased mortality risk. Design We present the first data indicating that "Music & Memory" interventions improve swallowing in individuals with advanced dementia, thereby making oral feeding easier and potentially diminishing reliance on PEG. Setting Columbia Health Care Center, Wyocena, WI (with Music&Memory.org, Mineola, NY and Stony Brook University). Participants Residents with advanced dementia (N = 5). Observation by eight professional caregivers. Results (1) Enhanced swallowing mechanism with Music & Memory prior to dining; (2) decreased incidents of choking during mealtime; (3) improved nutritional status; (4) reduced weight loss; (5) reduced need for speech interventions; (6) enhanced quality of life. Conclusions The preliminary results call for additional research.

Relationship between speaking English as a second language and agitation in people with dementia living in care homes: Results from the MARQUE (Managing Agitation and Raising Quality of life) English national care home survey

PubMed Central

Rapaport, P.; Robertson, S.; Marston, L.; Barber, J.; Manela, M.; Livingston, G.

2017-01-01

Objective As not speaking English as a first language may lead to increased difficulties in communication with staff and other residents, we (1) tested our primary hypotheses that care home residents with dementia speaking English as a second language experience more agitation and overall neuropsychiatric symptoms, and (2) explored qualitatively how staff consider that residents' language, ethnicity, and culture might impact on how they manage agitation. Methods We interviewed staff, residents with dementia, and their family carers from 86 care homes (2014–2015) about resident's neuropsychiatric symptoms, agitation, life quality, and dementia severity. We qualitatively interviewed 25 staff. Results Seventy‐one out of 1420 (5%) of care home residents with dementia interviewed spoke English as a second language. After controlling for dementia severity, age, and sex, and accounting for care home and staff proxy clustering, speaking English as a second language compared with as a first language was associated with significantly higher Cohen‐Mansfield Agitation Inventory (adjusted difference in means 8.3, 95% confidence interval 4.1 to 12.5) and Neuropsychiatric inventory scores (4.1, 0.65 to 7.5). Staff narratives described how linguistic and culturally isolating being in a care home where no residents or staff share your culture or language could be for people with dementia, and how this sometimes caused or worsened agitation. Conclusions Considering a person with dementia's need to be understood when selecting a care home and developing technology resources to enable dementia‐friendly translation services could be important strategies for reducing distress of people with dementia from minority ethnic groups who live in care homes. PMID:28971511

[Application of music therapy for managing agitated behavior in older people with dementia].

PubMed

Sung, Huei-Chuan; Chang, Anne M; Abbey, Jennifer

2006-10-01

Older people with dementia may display negative emotions, memory problems, sleep disturbance, and agitated behavior. Among these symptoms, agitated behavior has been identified by families and nursing staff as the care problem that presents the greatest challenge. Several studies have found that music therapy reduced agitated behaviors in those with dementia and recommended use of music as an effective strategy in managing this behavioral problem. Music therapy represents a lower cost, effective care approach that nursing staff can easily learn and apply to those with dementia. Furthermore, reductions in agitated behavior in dementia patients that result from music therapy can also alleviate caregiver stress and burden of care, leading to improvements in the health and quality of life of both dementia patients and their caregivers. This paper aims to introduce the principles and application of music therapy in the management of agitated behavior in those with dementia.

A European study investigating patterns of transition from home care towards institutional dementia care: the protocol of a RightTimePlaceCare study

PubMed Central

2012-01-01

Background Health care policies in many countries aim to enable people with dementia to live in their own homes as long as possible. However, at some point during the disease the needs of a significant number of people with dementia cannot be appropriately met at home and institutional care is required. Evidence as to best practice strategies enabling people with dementia to live at home as long as possible and also identifying the right time to trigger admission to a long-term nursing care facility is therefore urgently required. The current paper presents the rationale and methods of a study generating primary data for best-practice development in the transition from home towards institutional nursing care for people with dementia and their informal caregivers. The study has two main objectives: 1) investigate country-specific factors influencing institutionalization and 2) investigate the circumstances of people with dementia and their informal caregivers in eight European countries. Additionally, data for economic evaluation purposes are being collected. Methods/design This paper describes a prospective study, conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain, United Kingdom). A baseline assessment and follow-up measurement after 3 months will be performed. Two groups of people with dementia and their informal caregivers will be included: 1) newly admitted to institutional long-term nursing care facilities; and 2) receiving professional long-term home care, and being at risk for institutionalization. Data will be collected on outcomes for people with dementia (e.g. quality of life, quality of care), informal caregivers (e.g. caregiver burden, quality of life) and costs (e.g. resource utilization). Statistical analyses consist of descriptive and multivariate regression techniques and cross-country comparisons. Discussion The current study, which is part of a large European project 'RightTimePlaceCare', generates primary data on outcomes and costs of long-term nursing care for people with dementia and their informal caregivers, specifically focusing on the transition from home towards institutional care. Together with data collected in three other work packages, knowledge gathered in this study will be used to inform and empower patients, professionals, policy and related decision makers to manage and improve health and social dementia care services. PMID:22269343

Implementing Dementia Care Models in Primary Care Settings: The Aging Brain Care Medical Home (Special Supplement)

PubMed Central

Callahan, Christopher M.; Boustani, Malaz A.; Weiner, Michael; Beck, Robin A.; Livin, Lee R.; Kellams, Jeffrey J.; Willis, Deanna R.; Hendrie, Hugh C.

2010-01-01

Objectives The purpose of this paper is to describe our experience in implementing a primary care-based dementia and depression care program focused on providing collaborative care for dementia and late-life depression. Methods Capitalizing on the substantial interest in the US on the patient-centered medical home concept, the Aging Brain Care Medical Home targets older adults with dementia and/or late life depression in the primary care setting. We describe a structured set of activities that laid the foundation for a new partnership with the primary care practice and the lessons learned in implementing this new care model. We also provide a description of the core components of this innovative memory care program. Results Findings from three recent randomized clinical trials provided the rationale and basic components for implementing the new memory care program. We used the reflective adaptive process as a relationship building framework that recognizes primary care practices as complex adaptive systems. This framework allows for local adaptation of the protocols and procedures developed in the clinical trials. Tailored care for individual patients is facilitated through a care manager working in collaboration with a primary care physician and supported by specialists in a memory care clinic as well as by information technology resources. Conclusions We have successfully overcome many system-level barriers in implementing a collaborative care program for dementia and depression in primary care. Spontaneous adoption of new models of care is unlikely without specific attention to the complexities and resource constraints of health care systems. PMID:20945236

Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise.

PubMed

Parveen, Sahdia; Peltier, Carol; Oyebode, Jan R

2017-03-01

Despite the rapidly ageing population and a predicted sevenfold increase in the prevalence of dementia in minority ethnic communities, people from these communities remain under-represented in specialist dementia services. Leventhal's Model of Self-Regulation suggests perceptions of illness facilitate help-seeking behaviours such as the use of services. This scoping exercise makes use of the model to explore perceptions of dementia in British Indian, African and Caribbean, and East and Central European communities in the United Kingdom. Between August 2013 and April 2014, culturally specific dementia awareness roadshows were attended by people living with dementia, carers and members of the public. During the roadshows, 62 British Indian, 50 African and Caribbean, and 63 East and Central European attenders participated in discussion groups and a dementia knowledge quiz. Thematic and framework analysis were conducted on the discussion group data. Three main themes are presented: Perceptions of dementia, awareness of dementia in the wider family and community, and awareness and use of services. The findings suggest that although groups attributed a biological basis for memory loss, a number of misconceptions prevailed regarding the cause of dementia. Groups also made use of religion, as opposed to medical healthcare services, as a form of personal and treatment control. Seeking help from healthcare services was hindered by lack of awareness of services, and culturally specific barriers such as language. The findings have a number of implications for policy and practice including the development of public health interventions and the need to focus further on reducing barriers to accessing services. © 2016 John Wiley & Sons Ltd.

A Quality Improvement System to Manage Feeding Assistance Care in Assisted-Living.

PubMed

Simmons, Sandra F; Coelho, Chris S; Sandler, Andrew; Schnelle, John F

2018-03-01

To describe a feasible quality improvement system to manage feeding assistance care processes in an assisted living facility (ALF) that provides dementia care and the use of these data to maintain the quality of daily care provision and prevent unintentional weight loss. Supervisory ALF staff used a standardized observational protocol to assess feeding assistance care quality during and between meals for 12 consecutive months for 53 residents receiving dementia care. Direct care staff received feedback about the quality of assistance and consistency of between-meal snack delivery for residents with low meal intake and/or weight loss. On average, 78.4% of the ALF residents consumed more than one-half of each served meal and/or received staff assistance during meals to promote consumption over the 12 months. An average of 79.7% of the residents were offered snacks between meals twice per day. The prevalence of unintentional weight loss averaged 1.3% across 12 months. A quality improvement system resulted in sustained levels of mealtime feeding assistance and between-meal snack delivery and a low prevalence of weight loss among ALF residents receiving dementia care. Given that many ALF residents receiving dementia care are likely to be at risk for low oral intake and unintentional weight loss, ALFs should implement a quality improvement system similar to that described in this project, despite the absence of regulations to do so. Copyright © 2018 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

Cognitive stimulation therapy as a sustainable intervention for dementia in sub-Saharan Africa: feasibility and clinical efficacy using a stepped-wedge design.

PubMed

Paddick, Stella-Maria; Mkenda, Sarah; Mbowe, Godfrey; Kisoli, Aloyce; Gray, William K; Dotchin, Catherine L; Ternent, Laura; Ogunniyi, Adesola; Kissima, John; Olakehinde, Olaide; Mushi, Declare; Walker, Richard W

2017-06-01

Cognitive stimulation therapy (CST) is a psychosocial group-based intervention for dementia shown to improve cognition and quality of life with a similar efficacy to cholinesterase inhibitors. Since CST can be delivered by non-specialist healthcare workers, it has potential for use in low-resource environments, such as sub-Saharan Africa (SSA). We aimed to assess the feasibility and clinical effectiveness of CST in rural Tanzania using a stepped-wedge design. Participants and their carers were recruited through a community dementia screening program. Inclusion criteria were DSM-IV diagnosis of dementia of mild/moderate severity following detailed assessment. No participant had a previous diagnosis of dementia and none were taking a cholinesterase inhibitor. Primary outcomes related to the feasibility of conducting CST in this setting. Key clinical outcomes were changes in quality of life and cognition. The assessing team was blind to treatment group membership. Thirty four participants with mild/moderate dementia were allocated to four CST groups. Attendance rates were high (85%) and we were able to complete all 14 sessions for each group within the seven week timeframe. Substantial improvements in cognition, anxiety, and behavioral symptoms were noted following CST, with smaller improvements in quality of life measures. The number needed to treat was two for a four-point cognitive (adapted Alzheimer's Disease Assessment Scale-Cognitive) improvement. This intervention has the potential to be low-cost, sustainable, and adaptable to other settings across SSA, particularly if it can be delivered by non-specialist health workers.

Environmental risk factors for dementia: a systematic review.

PubMed

Killin, Lewis O J; Starr, John M; Shiue, Ivy J; Russ, Tom C

2016-10-12

Dementia risk reduction is a major and growing public health priority. While certain modifiable risk factors for dementia have been identified, there remains a substantial proportion of unexplained risk. There is evidence that environmental risk factors may explain some of this risk. Thus, we present the first comprehensive systematic review of environmental risk factors for dementia. We searched the PubMed and Web of Science databases from their inception to January 2016, bibliographies of review articles, and articles related to publically available environmental data. Articles were included if they examined the association between an environmental risk factor and dementia. Studies with another outcome (for example, cognition), a physiological measure of the exposure, case studies, animal studies, and studies of nutrition were excluded. Data were extracted from individual studies which were, in turn, appraised for methodological quality. The strength and consistency of the overall evidence for each risk factor identified was assessed. We screened 4784 studies and included 60 in the review. Risk factors were considered in six categories: air quality, toxic heavy metals, other metals, other trace elements, occupational-related exposures, and miscellaneous environmental factors. Few studies took a life course approach. There is at least moderate evidence implicating the following risk factors: air pollution; aluminium; silicon; selenium; pesticides; vitamin D deficiency; and electric and magnetic fields. Studies varied widely in size and quality and therefore we must be circumspect in our conclusions. Nevertheless, this extensive review suggests that future research could focus on a short list of environmental risk factors for dementia. Furthermore, further robust, longitudinal studies with repeated measures of environmental exposures are required to confirm these associations.

Family members' experience of the pre-diagnostic phase of dementia: a synthesis of qualitative evidence.

PubMed

Rogers, Kirrily; Coleman, Honor; Brodtmann, Amy; Darby, David; Anderson, Vicki

2017-09-01

Most research on family members' experience of dementia has focused on the time after diagnosis. Yet, once people reach clinical attention, families have already been living with the changes for some time. These pre-diagnosis experiences can influence later caregiving. We aimed to synthesize qualitative research exploring family members' experiences of the pre-diagnostic phase of dementia to inform clinical practice. We conducted a thematic synthesis of 11 studies that met our inclusion criteria following a comprehensive literature search. An overarching theme, sense-making, captured the primary process that family members engage in throughout the pre-diagnostic period. Within this, four major analytic themes were extracted as central concepts in understanding family members' experiences of the pre-diagnostic phase of dementia: the nature of change; appraisals of change; reactions to change; and the influence of others. Relevant features of the family experience of dementia onset can be characterized within several major themes. These findings highlight the complex process of recognizing early symptoms of dementia for people living with this condition and their families. Our findings also provide the foundation for developing theoretical frameworks that will ultimately assist with improving recognition of dementia onset, clinical communication with family members, and interventions to reduce family burden.

The Science of Vascular Contributions to Cognitive Impairment and Dementia (VCID): A Framework for Advancing Research Priorities in the Cerebrovascular Biology of Cognitive Decline.

PubMed

Corriveau, Roderick A; Bosetti, Francesca; Emr, Marian; Gladman, Jordan T; Koenig, James I; Moy, Claudia S; Pahigiannis, Katherine; Waddy, Salina P; Koroshetz, Walter

2016-03-01

The World Health Organization reports that 47.5 million people are affected by dementia worldwide. With aging populations and 7.7 million new cases each year, the burden of illness due to dementia approaches crisis proportions. Despite significant advances in our understanding of the biology of Alzheimer's disease (AD), the leading dementia diagnosis, the actual causes of dementia in affected individuals are unknown except for rare fully penetrant genetic forms. Evidence from epidemiology and pathology studies indicates that damage to the vascular system is associated with an increased risk of many types of dementia. Both Alzheimer's pathology and cerebrovascular disease increase with age. How AD affects small blood vessel function and how vascular dysfunction contributes to the molecular pathology of Alzheimer's are areas of intense research. The science of vascular contributions to cognitive impairment and dementia (VCID) integrates diverse aspects of biology and incorporates the roles of multiple cell types that support the function of neural tissue. Because of the proven ability to prevent and treat cardiovascular disease and hypertension with population benefits for heart and stroke outcomes, it is proposed that understanding and targeting the biological mechanisms of VCID can have a similarly positive impact on public health.

The UCLA Alzheimer’s and Dementia Care Program for Comprehensive, Coordinated, Patient-centered Care: Preliminary Data

PubMed Central

Reuben, David B.; Evertson, Leslie Chang; Wenger, Neil S.; Serrano, Katherine; Chodosh, Joshua; Ercoli, Linda; Tan, Zaldy S.

2013-01-01

Dementia is a chronic disease that requires both medical and social services to provide high quality of care and prevent complications. As a result of time constraints in practice, lack of systems-based approaches, and poor integration of community-based organizations (CBOs), the quality of care for dementia is poor compared to other diseases that affect older persons. The UCLA Alzheimer’s and Dementia Care (UCLA ADC) program partners with CBOs to provide comprehensive, coordinated, patient-centered care for patients with Alzheimer’s disease and other dementias. The goals of the program are to maximize patient function, independence and dignity, minimize caregiver strain and burnout and reduce unnecessary costs. The UCLA ADC program consists of five key components: patient recruitment and a dementia registry, structured needs assessments of patients in the registry and their caregivers, creation and implementation of individualized dementia care plans based on needs assessments and input from the primary care physicians, monitoring and revising care plans, as needed, and access 24/7, 365 days a year for assistance and advice. The program uses a co-management model with a nurse practitioner Dementia Care Manager working with primary care physicians and CBOs. Based on the first 150 patients served, the most common recommendations in the initial care plans were referrals to support groups (73%), Alzheimer’s Association Safe Return (73%), caregiver training (45%), and medication adjustment (41%). The program will be evaluated on its ability to achieve the triple aim of better care for individuals, better health for populations, and lower costs. PMID:24329821

Multiple imputation for estimating the risk of developing dementia and its impact on survival.

PubMed

Yu, Binbing; Saczynski, Jane S; Launer, Lenore

2010-10-01

Dementia, Alzheimer's disease in particular, is one of the major causes of disability and decreased quality of life among the elderly and a leading obstacle to successful aging. Given the profound impact on public health, much research has focused on the age-specific risk of developing dementia and the impact on survival. Early work has discussed various methods of estimating age-specific incidence of dementia, among which the illness-death model is popular for modeling disease progression. In this article we use multiple imputation to fit multi-state models for survival data with interval censoring and left truncation. This approach allows semi-Markov models in which survival after dementia depends on onset age. Such models can be used to estimate the cumulative risk of developing dementia in the presence of the competing risk of dementia-free death. Simulations are carried out to examine the performance of the proposed method. Data from the Honolulu Asia Aging Study are analyzed to estimate the age-specific and cumulative risks of dementia and to examine the effect of major risk factors on dementia onset and death.

Towards onset prevention of cognition decline in adults with Down syndrome (The TOP-COG study): A pilot randomised controlled trial.

PubMed

Cooper, Sally-Ann; Ademola, Temitope; Caslake, Muriel; Douglas, Elizabeth; Evans, Jonathan; Greenlaw, Nicola; Haig, Caroline; Hassiotis, Angela; Jahoda, Andrew; McConnachie, Alex; Morrison, Jill; Ring, Howard; Starr, John; Stiles, Ciara; Sirisena, Chammy; Sullivan, Frank

2016-07-29

Dementia is very common in Down syndrome (trisomy 21) adults. Statins may slow brain amyloid β (Aβ, coded on chromosome 21) deposition and, therefore, delay Alzheimer disease onset. One prospective cohort study with Down syndrome adults found participants on statins had reduced risk of incident dementia, but there are no randomised controlled trials (RCTs) on this issue. Evidence is sparse on the best instruments to detect longitudinal cognitive decline in older Down syndrome adults. TOP-COG was a feasibility/pilot, double-blind RCT of 12 months simvastatin 40 mg versus placebo for the primary prevention of dementia in Alzheimer disease in Down syndrome adults aged 50 years or older. Group allocation was stratified by age, apolipoprotein E (APOE) ε4 allele status, and cholesterol level. Recruitment was from multiple general community sources over 12 months. Adults with dementia, or simvastatin contraindications, were excluded. Main outcomes were recruitment and retention rates. Cognitive decline was measured with a battery of tests; secondary measures were adaptive behaviour skills, general health, and quality of life. Assessments were conducted pre randomisation and at 12 months post randomisation. Blood Aβ40/Aβ42 levels were investigated as a putative biomarker. Results were analysed on an intention-to-treat basis. A qualitative sub-study was conducted and analysed using the Framework Approach to determine recruitment motivators/barriers, and participation experience. We identified 181 (78 %) of the likely eligible Down syndrome population, and recruited 21 (11.6 %), from an area with a general population size of 3,135,974. Recruitment was highly labour-intensive. Thirteen (62 %) participants completed the full year. Results favoured the simvastatin group. The most appropriate cognitive instrument (regarding ease of completion and detecting change over time) was the Memory for Objects test from the Neuropsychological Assessment of Dementia in Individuals with Intellectual Disabilities battery. Cognitive testing appeared more sensitive than proxy-rated adaptive behaviour, quality of life, or general health scores. Aβ40 levels changed less for the simvastatin group (not statistically significant). People mostly declined to participate because of not wanting to take medication, and not knowing if they would receive simvastatin or placebo. Participants reported enjoying taking part. A full-scale RCT is feasible. It will need 37 % UK population coverage to recruit the required 160 participants. Information/education about the importance of RCT participation is needed for this population. ISRCTN67338640 .

A survey of the Queensland healthcare workforce: attitudes towards dementia care and training

PubMed Central

2013-01-01

Background Positive attitudes of healthcare staff towards people with dementia promote higher quality care, although little is known about important factors that underlie positive attitudes. Key aims of this project were to explore the relationships between staff attitudes towards dementia, self-confidence in caring for people with dementia, experience and dementia education and training. Methods A brief online survey was developed and widely distributed to registered nurses and allied health professionals working in Queensland in 2012. Regression analyses were performed to identify important predictors of self-confidence in caring for people with dementia and positive attitudes towards people with dementia. Results Five hundred and twenty-four surveys were completed by respondents working in a range of care settings across Queensland. Respondents were predominantly female (94.1%), and most were registered nurses (60%), aged between 41 and 60 years (65.6%). Around 40% regularly worked with people with dementia and high levels of self-confidence in caring for this population and positive attitudes towards people with dementia were reported. The majority of respondents (67%) had participated in a dementia education/training activity in the past 12 months. More experience working with people with dementia predicted greater self-confidence while recent participation in a dementia education/training and higher self-confidence in caring for a person with dementia significantly predicted more positive attitudes towards people with dementia. Conclusions These results confirm the importance of self-confidence and dementia education in fostering positive attitudes and care practices towards people with dementia. Our results also indicate that the demand for ongoing dementia education is high amongst health care workers and it is recommended that regular dementia education/ training be provided and promoted for all healthcare personnel who work with people with dementia. PMID:24073708

Evaluating a dementia learning community: exploratory study and research implications.

PubMed

Sheaff, Rod; Sherriff, Ian; Hennessy, Catherine Hagan

2018-02-05

Access times for, the costs and overload of hospital services are an increasingly salient issue for healthcare managers in many countries. Rising demand for hospital care has been attributed partly to unplanned admissions for older people, and among these partly to the increasing prevalence of dementia. The paper makes a preliminary evaluation of the logic model of a Dementia Learning Community (DLC) intended to reduce unplanned hospital admissions from care homes of people with dementia. A dementia champion in each DLC care home trained other staff in dementia awareness and change management with the aims of changing work routines, improving quality of life, and reducing demands on external services. Controlled mixed methods realistic evaluation comparing 13 intervention homes with 10 controls in England during 2013-15. Each link in the assumed logic model was tested to find whether that link appeared to exist in the DLC sites, and if so whether its effects appeared greater there than in control sites, in terms of selected indicators of quality of life (DCM Well/Ill-Being, QUALID, end-of-life planning); and impacts on ambulance call-outs and hospital admissions. The training was implemented as planned, and triggered cycles of Plan-Do-Study-Act activity in all the intervention care homes. Residents' well-being scores, measured by dementia care mapping, improved markedly in half of the intervention homes but not in the other half, where indeed some scores deteriorated markedly. Most other care quality indicators studied did not significantly improve during the study period. Neither did ambulance call-out or emergency hospital admission rates. PDSA cycles appeared to be the more 'active ingredient' in this intervention. The reasons why they impacted on well-being in half of the intervention sites, and not the others, require further research. A larger, longer study would be necessary to measure definitively any impacts on unplanned hospital admissions. Our evidence suggested revising the DLC logic model to include care planning and staff familiarisation with residents' personal histories and needs as steps towards improving residents' quality of life.

Exploring staff perceptions on the role of physical environment in dementia care setting.

PubMed

Lee, Sook Y; Chaudhury, Habib; Hung, Lillian

2016-07-01

This study explored staff perceptions of the role of physical environment in dementia care facilities in affecting resident's behaviors and staff care practice. We conducted focus groups with staff (n = 15) in two purposely selected care facilities in Vancouver, Canada. Focus group participants included nurses, care aides, recreation staff, administrative staff, and family. Data analysis revealed two themes: (a) a supportive physical environment contributes positively to both quality of staff care interaction and residents' quality of life and (b) an unsupportive physical environment contributes negatively to residents' quality of life and thereby makes the work of staff more challenging. The staff participants collectively viewed that comfort, familiarity, and an organized space were important therapeutic resources for supporting the well-being of residents. Certain behaviors of residents were influenced by poor environmental factors, including stimulation overload, safety risks, wayfinding challenge, and rushed care This study demonstrates the complex interrelationships among the dementia care setting's physical environment, staff experiences, and residents' quality of life. © The Author(s) 2014.

Applying systemic functional linguistics to conversations with dementia: the linguistic construction of relationships between participants.

PubMed

Müller, Nicole; Mok, Zaneta

2012-02-01

Social isolation in dementia is a growing concern as the incidence and prevalence of dementing conditions is on the rise in many societies. Positive social interactions, which foster the construction and enactment of positive interpersonal relationships and therefore positive discursive identities, make an important contribution to emotional well-being. In this article, we investigate how two women diagnosed with dementia of the Alzheimer's type use language to relate to each other and two visiting graduate students. We use Systemic Functional Linguistics as an analytical framework, specifically investigating the use of vocatives and naming, and conversational moves and exchanges. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Quality of care and quality of life of people with dementia living at green care farms: a cross-sectional study.

PubMed

de Boer, Bram; Hamers, Jan P H; Zwakhalen, Sandra M G; Tan, Frans E S; Verbeek, Hilde

2017-07-19

Many countries are introducing smaller, more home-like care facilities that represent a radically new approach to nursing home care for people with dementia. The green care farm is a new type of nursing home developed in the Netherlands. The goal of this study was to compare quality of care, quality of life and related outcomes in green care farms, regular small-scale living facilities and traditional nursing homes for people with dementia. A cross-sectional design was used. Three types of nursing homes were included: (1) green care farms; (2) regular small-scale living facilities; (3) traditional nursing homes. All participating nursing homes were non-profit, collectively funded nursing homes in the south of the Netherlands. One hundred and fifteen residents with a formal diagnosis of dementia were included in the study. Data on quality of care was gathered and consisted of outcome indicators (e.g. falling incidents, pressure ulcers), structure indicators (e.g. hours per resident per day), and process indicators (e.g. presence, accessibility and content of protocols on care delivery). Furthermore, questionnaires on cognition, dependence in activities of daily living, quality of life, social engagement, neuropsychiatric symptoms, agitation, and depression were used. Data showed that quality of care was comparable across settings. No large differences were found on clinical outcome measures, hours per resident per day, or process indicators. Higher quality of life scores were reported for residents of green care farms in comparison with residents of traditional nursing homes. They scored significantly higher on the Quality of Life - Alzheimer's disease Scale (p < 0.05, ES = 0.8) indicating a better quality of life. In addition, residents of green care farms scored higher on three quality of life domains of the Qualidem: positive affect, social relations and having something to do (p < 0.05, ES > 0.7). No differences with regular small-scale living facilities were found. Green care farms seem to be a valuable alternative to existing nursing homes. This is important as people with dementia are a heterogeneous group with varying needs. In order to provide tailored care there also is a need for a variety of living environments.

The needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey.

PubMed

Miranda-Castillo, Claudia; Woods, Bob; Orrell, Martin

2013-02-04

Few reports have been published about differences in perspectives on perceived needs among community-residing people with dementia, their family caregivers, and professionals. The aim of this study was to compare these perspectives. During 2006 and 2007, one-hundred and fifty two interviews of people with dementia and their caregivers about the needs of the person with dementia were performed by four professionals using The Camberwell Assessment of Need for the Elderly (CANE). Professionals' views on met and unmet needs of people with dementia were obtained for the total sample, family caregivers' perspectives were gained for 125 people with dementia, and people with dementia's views on their own needs were obtained for 125 persons with dementia. People with dementia reported fewer needs compared with the reports of their caregivers and the professionals. The most frequent unmet needs reported by people with dementia, caregivers and professionals were in the areas of daytime activities, company, and psychological distress; however, people with dementia rated psychological distress as the commonest unmet need. Since the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them.

Laughter and humor as complementary and alternative medicines for dementia patients.

PubMed

Takeda, Masatoshi; Hashimoto, Ryota; Kudo, Takashi; Okochi, Masayasu; Tagami, Shinji; Morihara, Takashi; Sadick, Golam; Tanaka, Toshihisa

2010-06-18

The number of dementia patients has increased worldwide, with an estimated 13.7 million dementia patients in the Asia Pacific region alone. This number is expected to increase to 64.6 million by the year 2050. As a result of advances in research, there several pharmacological therapies available for the treatment of dementia patients. However, current treatments do not suppress the disease process and cannot prevent dementia, and it will be some time before these goals are realized. In the meantime, complementary and alternative medicine (CAM) is an important aspect in the treatment of dementia patients to improve their quality of life throughout the long course of the disease. Considering the individuality of dementia patients, applicability of laughter and humor therapy is discussed. Even though there are many things that need to be elucidated regarding the mechanisms underlying the beneficial effects of laughter and humor, both may be good CAM for dementia patients if they are applied carefully and properly. In this debate article, the physiological basis and actual application of laughter and humor in the treatment of dementia patients are presented for discussion on the applicability to dementia patients.

Laughter and humor as complementary and alternative medicines for dementia patients

PubMed Central

2010-01-01

Background The number of dementia patients has increased worldwide, with an estimated 13.7 million dementia patients in the Asia Pacific region alone. This number is expected to increase to 64.6 million by the year 2050. Discussion As a result of advances in research, there several pharmacological therapies available for the treatment of dementia patients. However, current treatments do not suppress the disease process and cannot prevent dementia, and it will be some time before these goals are realized. In the meantime, complementary and alternative medicine (CAM) is an important aspect in the treatment of dementia patients to improve their quality of life throughout the long course of the disease. Considering the individuality of dementia patients, applicability of laughter and humor therapy is discussed. Even though there are many things that need to be elucidated regarding the mechanisms underlying the beneficial effects of laughter and humor, both may be good CAM for dementia patients if they are applied carefully and properly. Summary In this debate article, the physiological basis and actual application of laughter and humor in the treatment of dementia patients are presented for discussion on the applicability to dementia patients. PMID:20565815

Physiological and functional consequences of caregiving for relatives with dementia

PubMed Central

Fonareva, Irina; Oken, Barry S.

2014-01-01

Background Chronic stress negatively affects health and well-being. A growing population of informal dementia caregivers experience chronic stress associated with extraordinary demands of caring for a relative with dementia. This review summarizes physiological and functional changes due to chronic dementia caregiver stress. Methods A literature search for papers assessing effects of dementia caregiving was conducted focusing on publications evaluating differences between caregivers and non-caregivers in objective measures of health and cognition. Results The review identified 37 studies describing data from 4145 participants including 749 dementia caregivers and 3396 non-caregiver peers. Objective outcome measures affected in dementia caregivers included markers of dyscoagulation, inflammation, and cell aging as well as measures of immune function, sleep, and cognition. Though diverse in designs, samples, and study quality, the majority of the studies indicated increased vulnerability of dementia caregivers to detrimental changes in health and cognition. Demographic and personality characteristics moderating or mediating effects of chronic stress in caregivers were also reviewed. Conclusions There is accumulating evidence that chronic dementia caregiver stress increases their vulnerability to disease and diminishes their ability to provide optimal care. Clinicians and society need to appreciate the extent of deleterious effects of chronic stress on dementia caregiver health. PMID:24507463

Diagnosis and treatment of dementia: 2. Diagnosis

PubMed Central

Feldman, Howard H.; Jacova, Claudia; Robillard, Alain; Garcia, Angeles; Chow, Tiffany; Borrie, Michael; Schipper, Hyman M.; Blair, Mervin; Kertesz, Andrew; Chertkow, Howard

2008-01-01

Background Dementia can now be accurately diagnosed through clinical evaluation, cognitive screening, basic laboratory evaluation and structural imaging. A large number of ancillary techniques are also available to aid in diagnosis, but their role in the armamentarium of family physicians remains controversial. In this article, we provide physicians with practical guidance on the diagnosis of dementia based on recommendations from the Third Canadian Consensus Conference on the Diagnosis and Treatment of Dementia, held in March 2006. Methods We developed evidence-based guidelines using systematic literature searches, with specific criteria for study selection and quality assessment, and a clear and transparent decision-making process. We selected studies published from January 1996 to December 2005 that pertained to key diagnostic issues in dementia. We graded the strength of evidence using the criteria of the Canadian Task Force on Preventive Health Care. Results Of the 1591 articles we identified on all aspects of dementia diagnosis, 1095 met our inclusion criteria; 620 were deemed to be of good or fair quality. From a synthesis of the evidence in these studies, we made 32 recommendations related to the diagnosis of dementia. There are clinical criteria for diagnosing most forms of dementia. A standard diagnostic evaluation can be performd by family physicians over multiple visits. It involves a clinical history (from patient and caregiver), a physical examination and brief cognitive testing. A list of core laboratory tests is recommended. Structural imaging with computed tomography or magnetic resonance imaging is recommended in selected cases to rule out treatable causes of dementia or to rule in cerebrovascular disease. There is insufficient evidence to recommend routine functional imaging, measurement of biomarkers or neuropsychologic testing. Interpretation The diagnosis of dementia remains clinically integrative based on history, physical examination and brief cognitive testing. A number of core laboratory tests are also recommended. Structural neuroimaging is advised in selected cases. Other diagnostic approaches, including functional neuroimaging, neuropsychological testing and measurement of biomarkers, have shown promise but are not yet recommended for routine use by family physicians. PMID:18362376

Evaluating the MESSAGE Communication Strategies in Dementia training for use with community-based aged care staff working with people with dementia: a controlled pretest-post-test study.

PubMed

Conway, Erin R; Chenery, Helen J

2016-04-01

The study aims to evaluate the effects of a communication skills training programme on community aged care staff's knowledge of communication support in dementia and on staff's care experience. Dementia can lead to impairments in communication. Therefore, quality community-based dementia care requires that staff be skilled communicators, equipped to facilitate interactions with people with dementia. The current investigation evaluated the effectiveness of the MESSAGE Communication Strategies in Dementia for Care Staff training programme with respect to knowledge of communication support and the staff/caregiver experience. A multi-centre controlled pretest/post-test design with randomised cohort allocation was used. Outcome measures were completed at baseline, immediately after training (training group only), and at three-month follow-up. Thirty-eight care staff working in community aged care participated and completed all outcome measures (training = 22; control = 16).Training and control groups completed the following outcome measures: knowledge of communication support strategies, self-efficacy, preparedness to provide care, strain in nursing care and attitude to dementia care. Staff in the training group provided written feedback on the training. A significant improvement in knowledge scores from baseline was found for the training group both immediately after training and at three-month follow-up. There was also a significant training effect for self-efficacy and preparedness to provide care. No significant difference was found for the control group for any measure. No significant training effects were found for measures of strain or attitudes to dementia care. Feedback from staff suggests that the training was well received. The MESSAGE training was positively received by staff and had a significant effect on care staff knowledge, and confidence to provide care for people with dementia. The easily accessible multimedia training programme is well received by staff and has the potential to improve quality of care. © 2016 John Wiley & Sons Ltd.

A biopsychosocial vignette for case conceptualization in dementia (VIG-Dem): development and pilot study.

PubMed

Spector, Aimee; Hebditch, Molly; Stoner, Charlotte R; Gibbor, Luke

2016-09-01

The ability to identify biological, social, and psychological issues for people with dementia is an important skill for healthcare professionals. Therefore, valid and reliable measures are needed to assess this ability. This study involves the development of a vignette style measure to capture the extent to which health professionals use "Biopsychosocial" thinking in dementia care (VIG-Dem), based on the framework of the model developed by Spector and Orrell (2010). The development process consisted of Phase 1: Developing and refining the vignettes; Phase 2: Field testing (N = 9), and Phase 3: A pilot study to assess reliability and validity (N = 131). The VIG-Dem, consisting of two vignettes with open-ended questions and a standardized scoring scheme, was developed. Evidence for the good inter-rater reliability, convergent validity, and test-retest reliability were established. The VIG-Dem has good psychometric properties and may provide a useful tool in dementia care research and practice.

Distinct behavioural profiles in frontotemporal dementia and semantic dementia

PubMed Central

Snowden, J; Bathgate, D; Varma, A; Blackshaw, A; Gibbons, Z; Neary, D

2001-01-01

OBJECTIVE—To test predictions that frontotemporal dementia and semantic dementia give rise to distinct patterns of behavioural change.
METHODS—An informant based semistructured behavioural interview, covering the domains of basic and social emotions, social and personal behaviour, sensory behaviour, eating and oral behaviour, repetitive behaviours, rituals, and compulsions, was administered to carers of 41 patients with semantic dementia and with apathetic (FTD-A) and disinhibited (FTD-D) forms of frontotemporal dementia.
RESULTS—Consistent with prediction, emotional changes differentiated FTD from semantic dementia. Whereas lack of emotional response was pervasive in FTD, it was more selective in semantic dementia, affecting particularly the capacity to show fear. Social avoidance occurred more often in FTD and social seeking in semantic dementia. Patients with FTD showed reduced response to pain, whereas patients with semantic dementia more often showed exaggerated reactions to sensory stimuli. Gluttony and indiscriminate eating were characteristic of FTD, whereas patients with semantic dementia were more likely to exhibit food fads. Hyperorality, involving inedible objects, was unrelated to gluttony, indicating different underlying mechanisms. Repetitive behaviours were common in both FTD and semantic dementia, but had a more compulsive quality in semantic dementia. Behavioural differences were greater between semantic dementia and FTD-A than FTD-D. A logistic regression analysis indicated that emotional and repetitive, compulsive behaviours discriminated FTD from semantic dementia with 97% accuracy.
CONCLUSION—The findings confirm predictions regarding behavioural differences in frontotemporal and semantic dementia and point to differential roles of the frontal and temporal lobes in affect, social functioning, eating, and compulsive behaviour.

 PMID:11181853

ICT-based applications to improve social health and social participation in older adults with dementia. A systematic literature review.

PubMed

Pinto-Bruno, Ángel C; García-Casal, J Antonio; Csipke, Emese; Jenaro-Río, Cristina; Franco-Martín, Manuel

2017-01-01

Information and communication technologies (ICT) developers, together with dementia experts have created several technological solutions to improve and facilitate social health and social participation and quality of life of older adults living with dementia. However, there is a need to carry out a systematic literature review that focuses on the validity and efficacy of these new technologies assessing their utility to promote 'social health' and 'active ageing' in people with dementia. Searches in electronic databases identified 3824 articles of which 6 met the inclusion criteria and were coded according to their methodological approach, sample sizes, type of outcomes and results. Six papers were identified reporting the use of 10 different interventions with people with dementia. Qualitative studies (four) showed a benefit of the use of technologies to foster social participation in people with dementia. At the same time, barriers to a widespread use of these technologies in this population were identified. A quantitative study and a mixed-method study with quantitative outcomes showed that ICT-based interventions promote more social behaviours than non-technology-based interventions. In the last years, several technological devices for living independently and fostering social health and social participation in people with dementia have been developed. However, specific outcome measures to assess social health and social participation are needed. Even though the analysed studies provided some evidence-base for the use of technology in this field, there is an urge to develop high quality studies and specific outcome measures.

MODEM: A comprehensive approach to modelling outcome and costs impacts of interventions for dementia. Protocol paper.

PubMed

Comas-Herrera, Adelina; Knapp, Martin; Wittenberg, Raphael; Banerjee, Sube; Bowling, Ann; Grundy, Emily; Jagger, Carol; Farina, Nicolas; Lombard, Daniel; Lorenz, Klara; McDaid, David

2017-01-11

The MODEM project (A comprehensive approach to MODelling outcome and costs impacts of interventions for DEMentia) explores how changes in arrangements for the future treatment and care of people living with dementia, and support for family and other unpaid carers, could result in better outcomes and more efficient use of resources. MODEM starts with a systematic mapping of the literature on effective and (potentially) cost-effective interventions in dementia care. Those findings, as well as data from a cohort, will then be used to model the quality of life and cost impacts of making these evidence-based interventions more widely available in England over the period from now to 2040. Modelling will use a suite of models, combining microsimulation and macrosimulation methods, modelling the costs and outcomes of care, both for an individual over the life-course from the point of dementia diagnosis, and for individuals and England as a whole in a particular year. Project outputs will include an online Dementia Evidence Toolkit, making evidence summaries and a literature database available free to anyone, papers in academic journals and other written outputs, and a MODEM Legacy Model, which will enable local commissioners of services to apply the model to their own populations. Modelling the effects of evidence-based cost-effective interventions and making this information widely available has the potential to improve the health and quality of life both of people with dementia and their carers, while ensuring that resources are used efficiently.

The Special Needs Program for Inmate-Patients with Dementia (SNPID): a psychosocial program provided in the prison system.

PubMed

Hodel, Bettina; Sánchez, Heriberto G

2013-09-01

This article discusses a comprehensive psychosocial program developed for a prison in California--the Special Needs Program for Inmate-Patients with Dementia (SNPID). It describes the individual steps of the program, their content and their application in a system that has safety and security as its highest priority. An important and innovatory aspect of SNIPD is the role of other inmates in supporting inmates with dementia. The article concludes that psychosocial interventions can be appropriately applied in prison settings and make a difference in the quality of life for inmate-patients with dementia.

A landscape for training in dementia knowledge translation (DKT).

PubMed

Illes, Judy; Chahal, Neil; Beattie, B Lynn

2011-01-01

Meaningful translation of dementia research findings from the bench to the bedside is dependent on the quality of the knowledge to transfer and the availability and skills of investigators engaged in the knowledge translation process. Although there is no shortage of research on dementia, the latter has been more challenging. Results from a survey of 173 researchers from across Canada suggest that workshops and self-paced online training in dementia knowledge translation are needed to bridge the research-to-practice gap. Sharing information among professionals and with the public and formulating actionable messages to policy makers are primary goals.

Interventions to Improve the Oral Health of People with Dementia or Cognitive Impairment: A Review of the Literature.

PubMed

Siegel, E; Cations, M; Wright, C; Naganathan, V; Deutsch, A; Aerts, L; Brodaty, H

2017-01-01

Oral diseases and conditions are prevalent among older people with dementia and cognitive impairment. While many interventions have been advocated for use in this population, evidence for their effectiveness is unclear. Our objective was to review systematically the content and effectiveness of interventions and implementation strategies used to improve or maintain the oral health of people with dementia or cognitive impairment. Original studies published in English at any time until January 2015 were identified through electronic searches of the Medline, Embase, CINAHL, Scopus and Cochrane databases and hand searches of eligible studies and relevant reviews. Two investigators independently abstracted study characteristics and assessed the methodological quality of eligible studies. Results were presented as a narrative review because significant heterogeneity among included studies precluded a meta-analysis. The 18 included studies varied considerably in terms of size, scope and focus. Only two studies were identified that had been designed specifically for and examined exclusively in people with dementia or cognitive impairment. All studies were in residential care; none was population-based. While several studies reported positive effects, a number of methodological weaknesses were identified and the overall quality of included studies was poor. The specific outcomes targeted varied across studies but most studies focused almost exclusively on proximal clinical oral health outcomes such as levels of dental or denture plaque. Attempts to measure intervention integrity were limited and there was usually little or no effort to evaluate intervention effects over a sustained period. There is a lack of high quality evidence to support the effectiveness of oral health interventions and implementation strategies for older people with dementia or cognitive impairment. More rigorous, large scale research is needed in this area. Recommendations are provided to improve the overall quality of evaluation in this area. Emphasis must be placed on developing evidence-based, achievable and sustainable oral health strategies if the needs of people with dementia and cognitive impairment are to be met into the future.

Measuring quality of life of people with predementia and dementia and their caregivers: a systematic review protocol

PubMed Central

Landeiro, Filipa; Walsh, Katie; Ghinai, Isaac; Mughal, Seher; Nye, Elsbeth; Wace, Helena; Roberts, Nia; Lecomte, Pascal; Wittenberg, Raphael; Wolstenholme, Jane; Handels, Ron; Roncancio-Diaz, Emilse; Potashman, Michele H; Tockhorn-Heidenreich, Antje

2018-01-01

Introduction Dementia is the fastest growing major cause of disability globally and may have a profound impact on the health-related quality of life (HRQoL) of both the patient with dementia and those who care for them. This review aims to systematically identify and synthesise the measurements of HRQoL for people with, and their caregivers across the full spectrum of, dementia from its preceding stage of predementia to end of life. Methods and analysis A systematic literature review was conducted in Medical Literature Analysis and Retrieval System Online, ExcerptaMedicadataBASE, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effect, National Health Service Economic Evaluation Database and PsycINFO between January 1990 and the end of April 2017. Two reviewers will independently assess each study for inclusion and disagreements will be resolved by a third reviewer. Data will be extracted using a predefined data extraction form following best practice. Study quality will be assessed with the Effective Public Health Practice Project quality assessment tool. HRQoL measurements will be presented separately for people with dementia and caregivers by instrument used and, when possible, HRQoL will be reported by disease type and stage of the disease. Descriptive statistics of the results will be provided. A narrative synthesis of studies will also be provided discussing differences in HRQoL measurements by instrument used to estimate it, type of dementia and disease severity. Ethics and dissemination This systematic literature review is exempt from ethics approval because the work is carried out on published documents. The findings of the review will be disseminated in a related peer-reviewed journal and presented at conferences. They will also contribute to the work developed in the Real World Outcomes across the Alzheimer’s disease spectrum for better care: multimodal data access platform (ROADMAP). Trial registration number CRD42017071416. PMID:29602838

The Appropriate Use of Neuroimaging in the Diagnostic Work-Up of Dementia

PubMed Central

2014-01-01

Background Diagnosis of dementia is challenging and requires both ruling out potentially treatable underlying causes and ruling in a diagnosis of dementia subtype to manage patients and suitably plan for the future. Objectives This analysis sought to determine the appropriate use of neuroimaging during the diagnostic work-up of dementia, including indications for neuroimaging and comparative accuracy of alternative technologies. Data Sources A literature search was performed using Ovid MEDLINE, Ovid MEDLINE In-Process and Other Non-Indexed Citations, Ovid Embase, the Wiley Cochrane Library, and the Centre for Reviews and Dissemination database, for studies published between 2000 and 2013. Review Methods Data on diagnostic accuracy and impact on clinical decision making were abstracted from included studies. Quality of evidence was assessed using GRADE. Results The search yielded 5,374 citations and 15 studies were included. Approximately 10% of dementia cases are potentially treatable, though less than 1% reverse partially or fully. Neither prediction rules nor clinical indications reliably select the subset of patients who will likely benefit from neuroimaging. Clinical utility is highest in ambiguous cases or where dementia may be mixed, and lowest for clinically diagnosed Alzheimer disease or clinically excluded vascular dementia. There is a lack of evidence that MRI is superior to CT in detecting a vascular component to dementia. Accuracy of structural imaging is moderate to high for discriminating different types of dementia. Limitations There was significant heterogeneity in estimates of diagnostic accuracy, which often prohibited a statistical summary of findings. The quality of data reported by studies prohibited calculation of likelihood ratios in the present analysis. No studies from primary care were found; thus, generalizability beyond tertiary care settings may be limited. Conclusions A diagnosis of reversible dementia is rare. Imaging has the most clinical utility in cases where there is potentially mixed dementia or ambiguity as to the type of dementia despite prolonged follow-up (e.g., 2 years or more). Both CT and MRI are useful for detecting a vascular component of dementia. Plain Language Summary Dementia is a devastating condition of memory loss and behaviour change that affects many Canadians, especially older adults. Diagnosis is complex because symptoms can be caused by different brain diseases, such as Alzheimer disease, and in some cases by other causes such a tumour or cerebrovascular disease. Although dementia rarely improves much, an accurate diagnosis is important because it determines the treatment a patient should receive and helps patients and families understand what the future holds. Brain imaging, using computed tomography (CT) or magnetic resonance imaging (MRI) scans, may help in the diagnosis by allowing doctors to see changes in brain structure or function that explain the dementia. Unfortunately, it is not well understood which patients will most likely benefit from a brain scan and which type of scan works best to diagnose dementia. This study reviewed the published evidence about these questions. The study found that relying on specific symptoms to decide who should have a brain scan, rather than imaging all dementia patients, is unreliable and can miss some potentially treatable conditions. The study also found that scans have most value when doctors are uncertain as to the type of dementia despite monitoring the patient for a while (e.g., 2 years) or when the patient may have a combination of dementia types. Brain scans are often less helpful in the diagnosis of Alzheimer disease, and doctors can often use clinical assessment to rule out vascular dementia (another common type of dementia, related to cerebrovascular disease). The evidence also shows that MRI is not better than CT in detecting vascular dementia as a contributing cause. For Alzheimer disease, Creutzfeldt-Jakob disease, and clinically ambiguous dementias, both CT and MRI are highly accurate in correctly ruling out these diagnoses, but both types of scans have only low to moderate ability to correctly identify patients with any of these conditions. Importantly, the quality of the evidence available for this study was limited by considerable differences in research and analysis methods. PMID:24592296

[Day hospitals--predictors for utilisation and quality expectations from the perspective of family caregivers of dementia patients].

PubMed

Donath, Carolin; Bleich, Stefan; Grässel, Elmar

2009-05-01

To relieve the burden on family caregivers of dementia patients, the utilisation of day hospitals should be increased. Therefore, the predictive variables for utilisation as well as family caregivers' views regarding the quality of day hospitals must be investigated. The cross-sectional study was carried out as an anonymous, written survey of family caregivers of dementia patients in four regions of Germany. Quantitative and qualitative data from 404 family caregivers was analysed using binary logistic regression analysis and qualitative content analysis, respectively. In addition, 11 day hospital managers were interviewed concerning their quality concepts. The only significant predictor for the utilisation of day hospitals is the estimate of how helpful this support is for the family caregiver's situation. Those who have already had experiences with a day hospital expressed a wish for medical and psychiatric care by "well-trained" staff and a reasonable form of occupation for the dementia patient. In order to increase utilisation, family caregivers must be convinced of the advantages of using day hospitals. A day hospital that combines both activating occupational therapy and medical care by well-trained staff is what family caregivers wish most for their care-receivers.

Providing activity for people with dementia in care homes: a cluster randomised controlled trial.

PubMed

Wenborn, Jennifer; Challis, David; Head, Jenny; Miranda-Castillo, Claudia; Popham, Carolyn; Thakur, Ruchi; Illes, Jacqueline; Orrell, Martin

2013-12-01

Activity levels remain low in care homes, but activity engagement can enhance residents' quality of life. This study aimed to assess an occupational therapy programme designed to enable care home staff to increase activity provision. A cluster randomised controlled trial with blinded assessment of outcome was conducted. A total of 210 residents with dementia in 16 care homes were recruited. Intervention homes received the programme, and control homes were provided usual care. Primary outcome is quality of life; secondary measures are dependency, challenging behaviour, depression, anxiety, severity of dementia and number and type of medication. Quality of life decreased overall with statistically significant change in staff ratings (p < 0.001). At follow-up, staff-rated quality of life was slightly lower in the intervention group (mean difference in staff ratings = -1.91, 95% CI -3.39 to -0.43, p = 0.01). There were no significant differences between the two groups for self-rated quality of life or secondary outcomes. The results may be related to the following: wide variability in how the intervention was implemented, such as low staff attendance at the education and coaching sessions, and patchy provision of additional activities to residents; or the residents' severity of dementia or the choice of outcome measures. Future studies need to pay more attention to process measures such as implementation and fidelity strategies, and outcome measures that better capture the focus of the intervention such as level of engagement and activity. Copyright © 2013 John Wiley & Sons, Ltd.

Quality of life of nursing-home residents with dementia subject to surveillance technology versus physical restraints: an explorative study.

PubMed

Te Boekhorst, S; Depla, M F I A; Francke, A L; Twisk, J W R; Zwijsen, S A; Hertogh, C M P M

2013-04-01

As physical restraints should only be used in exceptional cases, there is an urgent need for alternatives to restraint use. Surveillance technology could be such an alternative. This study explored whether nursing-home residents with dementia subjected to surveillance technology had better quality of life scores for mood, behavioral and societal dimensions than residents with physical restraints. Quality of life was assessed longitudinally, with three measurements in six psychogeriatric nursing homes of residents with surveillance technology (n = 170) and residents with physical restraints (n = 22). QUALIDEM subscales were used to measure five dimensions of quality of life. Multilevel longitudinal univariate and multivariate regression techniques were used to analyze the data. Because physical restraints were almost exclusively used in residents with low activities of daily living (ADL) independency (18 of the 22), we restricted the regression analyses to residents with a Barthel Index score ≤ 5 (overall n = 53). Univariate results showed that highly ADL-dependent residents with surveillance technology had significantly more positive affect than highly ADL-dependent residents with physical restraints. However, this difference proved to be no longer significant after adjustment for the confounders: age, sex and stage of dementia. Quality of life of highly ADL-dependent nursing-home residents with dementia seems to be unrelated to the use of surveillance technology as opposed to physical restraints. Copyright © 2012 John Wiley & Sons, Ltd.

Patients With Very Mild Dementia May Confuse Objective Cognitive Impairments With Subjective Physical Health of Quality of Life: The Tome City Project in Japan.

PubMed

Kasai, Mari; Meguro, Kenichi

2018-01-01

Many elderly people with cognitive dysfunction may observe a decrease in their health levels and quality of life (QOL). The basic concept of QOL consists of several categories including physical functions and mental health. The QOL domain that is most important for elderly people is physical health and, to a lesser extent, psychological health, social relationships, and/ or the environment. Our aim was to explore the relationships between the subjective measure of QOL, an abbreviated version of the World Health Organization Quality of Life (WHOQOL-BREF) scale, and the objective measure of impairment, Clinical Dementia Rating (CDR), among elderly people in a community. Totally, 178 community dwellers aged 75 years and above agreed to participate and completed the WHOQOL-BREF; 66 (32 males, 34 females) scored a CDR of 0 (healthy), 86 (33, 53) scored a CDR of 0.5 (questionable dementia or very mild dementia), and 26 (12, 14) scored a CDR of 1 and above (dementia). According to Pearson's correlation coefficient analysis (significance level, p < 0.05), the physical domain of the WHOQOL-BREF had significant statistical negative correlations with all CDR subscales. The CDR subscale of memory impairment had a significant statistical negative correlation with the WHOQOL-BREF subscales of the physical ( r = -0.151, p = 0.044) and psychological ( r = -0.232, p < 0.002) domains. The CDR subscale of home and hobbies impairment had significant statistical negative correlations with all WHOQOL-BREF subscales including the physical ( r = -0.226, p = 0.002), psychological ( r = -0.226, p = 0.002), social ( r = -0.167, p = 0.026), and environmental ( r = -0.204, p = 0.006) domains. Patients with very mild dementia may confuse cognitive impairment and physical disabilities. In the future, we need to systematically combine memory clinics and all departments related to the elderly for the successful early detection and rehabilitation of, and long-term care for, dementia.

Machine learning and microsimulation techniques on the prognosis of dementia: A systematic literature review.

PubMed

Dallora, Ana Luiza; Eivazzadeh, Shahryar; Mendes, Emilia; Berglund, Johan; Anderberg, Peter

2017-01-01

Dementia is a complex disorder characterized by poor outcomes for the patients and high costs of care. After decades of research little is known about its mechanisms. Having prognostic estimates about dementia can help researchers, patients and public entities in dealing with this disorder. Thus, health data, machine learning and microsimulation techniques could be employed in developing prognostic estimates for dementia. The goal of this paper is to present evidence on the state of the art of studies investigating and the prognosis of dementia using machine learning and microsimulation techniques. To achieve our goal we carried out a systematic literature review, in which three large databases-Pubmed, Socups and Web of Science were searched to select studies that employed machine learning or microsimulation techniques for the prognosis of dementia. A single backward snowballing was done to identify further studies. A quality checklist was also employed to assess the quality of the evidence presented by the selected studies, and low quality studies were removed. Finally, data from the final set of studies were extracted in summary tables. In total 37 papers were included. The data summary results showed that the current research is focused on the investigation of the patients with mild cognitive impairment that will evolve to Alzheimer's disease, using machine learning techniques. Microsimulation studies were concerned with cost estimation and had a populational focus. Neuroimaging was the most commonly used variable. Prediction of conversion from MCI to AD is the dominant theme in the selected studies. Most studies used ML techniques on Neuroimaging data. Only a few data sources have been recruited by most studies and the ADNI database is the one most commonly used. Only two studies have investigated the prediction of epidemiological aspects of Dementia using either ML or MS techniques. Finally, care should be taken when interpreting the reported accuracy of ML techniques, given studies' different contexts.

Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study

PubMed Central

The, Anne-Mei; Pasman, Roeline; Onwuteaka-Philipsen, Bregje; Ribbe, Miel; van der Wal, Gerrit

2002-01-01

Objective To clarify the practice of withholding the artificial administration of fluids and food from elderly patients with dementia in nursing homes. Design Qualitative, ethnographic study in two phases. Setting 10 wards in two nursing homes in the Netherlands. Participants 35 patients with dementia, eight doctors, 43 nurses, and 32 families. Results The clinical course of dementia was considered normal and was rarely reason to begin the artificial administration of fluids and food in advanced disease. Fluids and food seemed to be given mainly when there was an acute illness or a condition that needed medical treatment and which required hydration to be effective. The medical condition of the patient, the wishes of the family, and the interpretations of the patients' quality of life by their care providers were considered more important than living wills and policy agreements. Conclusions Doctors' decisions about withholding the artificial administration of fluids and food from elderly patients with dementia are influenced more by the clinical course of the illness, the presumed quality of life of the patient, and the patient's medical condition than they are by advanced planning of care. In an attempt to understand the wishes of the patient doctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family. What is already known on this topicDebate has focused on whether it is beneficial to withhold the artificial administration of fluids and food from patients with advanced dementiaWhat this study addsThe course of dementia, the patient's quality of life, and the patient's current medical condition influence doctors' decision making more than advanced planning of careDoctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family PMID:12468479

Machine learning and microsimulation techniques on the prognosis of dementia: A systematic literature review

PubMed Central

Mendes, Emilia; Berglund, Johan; Anderberg, Peter

2017-01-01

Background Dementia is a complex disorder characterized by poor outcomes for the patients and high costs of care. After decades of research little is known about its mechanisms. Having prognostic estimates about dementia can help researchers, patients and public entities in dealing with this disorder. Thus, health data, machine learning and microsimulation techniques could be employed in developing prognostic estimates for dementia. Objective The goal of this paper is to present evidence on the state of the art of studies investigating and the prognosis of dementia using machine learning and microsimulation techniques. Method To achieve our goal we carried out a systematic literature review, in which three large databases—Pubmed, Socups and Web of Science were searched to select studies that employed machine learning or microsimulation techniques for the prognosis of dementia. A single backward snowballing was done to identify further studies. A quality checklist was also employed to assess the quality of the evidence presented by the selected studies, and low quality studies were removed. Finally, data from the final set of studies were extracted in summary tables. Results In total 37 papers were included. The data summary results showed that the current research is focused on the investigation of the patients with mild cognitive impairment that will evolve to Alzheimer’s disease, using machine learning techniques. Microsimulation studies were concerned with cost estimation and had a populational focus. Neuroimaging was the most commonly used variable. Conclusions Prediction of conversion from MCI to AD is the dominant theme in the selected studies. Most studies used ML techniques on Neuroimaging data. Only a few data sources have been recruited by most studies and the ADNI database is the one most commonly used. Only two studies have investigated the prediction of epidemiological aspects of Dementia using either ML or MS techniques. Finally, care should be taken when interpreting the reported accuracy of ML techniques, given studies’ different contexts. PMID:28662070

Patients With Very Mild Dementia May Confuse Objective Cognitive Impairments With Subjective Physical Health of Quality of Life: The Tome City Project in Japan

PubMed Central

Kasai, Mari; Meguro, Kenichi

2018-01-01

Many elderly people with cognitive dysfunction may observe a decrease in their health levels and quality of life (QOL). The basic concept of QOL consists of several categories including physical functions and mental health. The QOL domain that is most important for elderly people is physical health and, to a lesser extent, psychological health, social relationships, and/ or the environment. Our aim was to explore the relationships between the subjective measure of QOL, an abbreviated version of the World Health Organization Quality of Life (WHOQOL-BREF) scale, and the objective measure of impairment, Clinical Dementia Rating (CDR), among elderly people in a community. Totally, 178 community dwellers aged 75 years and above agreed to participate and completed the WHOQOL-BREF; 66 (32 males, 34 females) scored a CDR of 0 (healthy), 86 (33, 53) scored a CDR of 0.5 (questionable dementia or very mild dementia), and 26 (12, 14) scored a CDR of 1 and above (dementia). According to Pearson’s correlation coefficient analysis (significance level, p < 0.05), the physical domain of the WHOQOL-BREF had significant statistical negative correlations with all CDR subscales. The CDR subscale of memory impairment had a significant statistical negative correlation with the WHOQOL-BREF subscales of the physical (r = -0.151, p = 0.044) and psychological (r = -0.232, p < 0.002) domains. The CDR subscale of home and hobbies impairment had significant statistical negative correlations with all WHOQOL-BREF subscales including the physical (r = -0.226, p = 0.002), psychological (r = -0.226, p = 0.002), social (r = -0.167, p = 0.026), and environmental (r = -0.204, p = 0.006) domains. Patients with very mild dementia may confuse cognitive impairment and physical disabilities. In the future, we need to systematically combine memory clinics and all departments related to the elderly for the successful early detection and rehabilitation of, and long-term care for, dementia. PMID:29706921

[Quality of registration of dementia diagnosis in primary care: The situation in Spain in 2002-2011].

PubMed

de Hoyos-Alonso, María del Canto; Bonis, Julio; Bryant, Verónica; Castell Alcalá, María Victoria; Otero Puime, Ángel

2016-01-01

To ascertain the diagnosis associated with specific treatment for dementia in the Primary Care Electronic Clinical Record (PC-ECR) and to analyse the factors associated with the quality of registration. Descriptive study of patients taking cholinesterase inhibitors or memantine registered in Database for pharmacoepidemiological research in PC (BIFAP) 2011: 24,575 patients between 2002 and 2011. Diagnoses associated with first prescription of these drugs were grouped into 5 categories: "dementia", "memory impairment", "dementia-related diseases", "intercurrent processes" and "convenience codes". We calculated the prevalence of each category by age and sex for each study year (95%CI) and analysed the associations and trend for 2002-2011 using difference in proportions in independent samples and binary logistic regression. A code of "dementia" was associated with first prescription in 56.5% (95%CI: 55.8-57.1) of patients. It was higher in women [OR1.09 (95%CI: 1.03-1.15)] and with increasing follow-up time [OR1.07 (95%CI: 1.06-1.08) for each year of follow-up]. "Convenience codes" [16.3% (95%CI: 15.8-16.7)] were coded more frequently in women and in those ≥80 years; "Memory impairment" [12.4% (95%CI: 12.0-12.8)], "related diseases" [4.6% (95%CI: 4.4-4.8)] and "intercurrent processes" [10.3% (95%CI: 9.9-10.6)] were used more in men and in persons <80 years. Between 2002 and 2011 improved the use of "convenience codes". Almost half of the patients taking cholinesterase inhibitors or memantine do not have a diagnosis of dementia registered in their PC-ECR. Registration improves with increasing time of follow-up. Improvements are needed in the PC-ECR, adequate care coordination, and proactive approach to increase the quality of dementia registration. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.

Systematic review of information and support interventions for caregivers of people with dementia

PubMed Central

Thompson, Carl A; Spilsbury, Karen; Hall, Jill; Birks, Yvonne; Barnes, Colin; Adamson, Joy

2007-01-01

Background Dementia is an important health and social care problem and is one of the main causes of disability in later life. The number of families affected by dementia will dramatically increase over the next five decades. Despite the implications for health and social care services in the future, the overwhelming majority of care for people with dementia takes place away from health care settings. Providing informal care for someone with dementia can be psychologically, physically and financially expensive and a range of health service interventions aimed at supporting and providing information to these carers has developed to help carers meet these demands. This review examines whether information and support interventions improve the quality of life of people caring for someone with dementia. Methods A systematic review examining evidence from randomised controlled trials in which technology, individualised or group-based interventions built around the provision of support and/or information were evaluated. Results Forty-four studies were included in the review. Controlling for the quality of the evidence, we found statistically significant evidence that group-based supportive interventions impact positively on psychological morbidity. However, whilst the improvement was unlikely to be due to chance, the clinical significance of this finding should be interpreted tentatively, due to the difficulties in interpreting the standardised mean difference as a measure of effect and the complex aetiology of depression. No evidence was found for the effectiveness of any other form of intervention on a range of physical and psychological health outcomes. Conclusion There is little evidence that interventions aimed at supporting and/or providing information to carers of people with dementia are uniformly effective. There is a pressing need to ensure that supportive interventions at the development stage are accompanied by good quality randomised evaluations in which outcomes that are important to clinicians and carers are measured. PMID:17662119

Awareness of dementia by family carers of nursing home residents dying with dementia: a post-death study.

PubMed

Penders, Yolanda W H; Albers, Gwenda; Deliens, Luc; Vander Stichele, Robert; Van den Block, Lieve

2015-01-01

High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care. To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care characteristics associated with awareness. Post-death study using random cluster sampling. Structured questionnaires were completed by family carers, nursing staff, and general practitioners of deceased nursing home residents with dementia in Flanders, Belgium (2010). Of 190 residents who died with dementia, 53.2% of family carers responded. In 28% of cases, family carers indicated they were unaware their relative had dementia. Awareness by family carers was related to more advanced stages of dementia 1 month before death (odds ratio = 5.4), with 48% of family carers being unaware when dementia was mild and 20% unaware when dementia was advanced. The longer the onset of dementia after admission to a nursing home, the less likely family carers were aware (odds ratio = 0.94). Family carers are often unaware that their relative has dementia, that is, in one-fourth of cases of dementia and one-fifth of advanced dementia, posing considerable challenges for optimal care provision and end-of-life decision-making. Considering that family carers of residents who develop dementia later after admission to a nursing home are less likely to be aware, there is room for improving communication strategies toward family carers of nursing home residents. © The Author(s) 2014.

The needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey

PubMed Central

2013-01-01

Background Few reports have been published about differences in perspectives on perceived needs among community-residing people with dementia, their family caregivers, and professionals. The aim of this study was to compare these perspectives. Method During 2006 and 2007, one-hundred and fifty two interviews of people with dementia and their caregivers about the needs of the person with dementia were performed by four professionals using The Camberwell Assessment of Need for the Elderly (CANE). Professionals’ views on met and unmet needs of people with dementia were obtained for the total sample, family caregivers’ perspectives were gained for 125 people with dementia, and people with dementia’s views on their own needs were obtained for 125 persons with dementia. Results People with dementia reported fewer needs compared with the reports of their caregivers and the professionals. The most frequent unmet needs reported by people with dementia, caregivers and professionals were in the areas of daytime activities, company, and psychological distress; however, people with dementia rated psychological distress as the commonest unmet need. Conclusions Since the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them. PMID:23379786

Ethical considerations of doll therapy for people with dementia.

PubMed

Mitchell, Gary; Templeton, Michelle

2014-09-01

The use of doll therapy for people with dementia has been emerging in recent years. Providing a doll to someone with dementia has been associated with a number of benefits which include a reduction in episodes of distress, an increase in general well-being, improved dietary intake and higher levels of engagement with others. It could be argued that doll therapy fulfils the concepts of beneficence (facilitates the promotion of well-being) and respect for autonomy (the person with dementia can exercise their right to engage with dolls if they wish). However, some may believe that doll therapy is inappropriate when applied to the concepts of dignity (people with dementia are encouraged to interact with dolls) and non-maleficence (potential distress this therapy could cause for family members). The absence of rigorous empirical evidence and legislative guidelines render this a therapy that must be approached cautiously owing to the varied subjective interpretations of Kitwood's 'malignant social psychology' and bioethics. This article suggests that by applying a 'rights-based approach', healthcare professionals might be better empowered to resolve any ethical tensions they may have when using doll therapy for people with dementia. In this perspective, the internationally agreed upon principles of the United Nations Convention on the Rights of Persons with Disabilities provide a legal framework that considers the person with dementia as a 'rights holder' and places them at the centre of any ethical dilemma. In addition, those with responsibility towards caring for people with dementia have their capacity built to respect, protect and fulfil dementia patient's rights and needs. © The Author(s) 2014.

The stages of driving cessation for people with dementia: needs and challenges.

PubMed

Liddle, Jacki; Bennett, Sally; Allen, Shelley; Lie, David C; Standen, Bradene; Pachana, Nancy A

2013-12-01

The impact of dementia on safe driving is well recognized and is generally accepted that all people with dementia are likely to need to cease driving at some stage in the disease process. Both driving and driving cessation can have poor outcomes for people with dementia and their caregivers in terms of health, safety, community access, and well-being. Although approaches to facilitate better outcomes from driving cessation are being developed, the processes of driving cessation for people with dementia are still not fully understood. Within a descriptive phenomenological framework, semi-structured interviews were undertaken with key stakeholders, including retired drivers with dementia, family members, and health professionals. Findings from four retired drivers with dementia, 11 caregivers, and 15 health professionals characterized driving cessation for people with dementia as a process with three stages and associated challenges and needs. The early stage involved worried waiting, balancing safety with impending losses, and the challenge of knowing when to stop. The crisis stage involved risky driving or difficult transportation, acute adjustment to cessation and life without driving, and relationship conflict. The post-cessation stage was described as a long journey with ongoing battles and adjustments as well as decreased life space, and was affected by the disease progression and the exhaustion of caregiver. The concept of stages of driving cessation for people with dementia could be used to develop new approaches or adapt existing approaches to driving cessation. Interventions would need to be individualized, optimally timed, and address grief, explore realistic alternative community access, and simultaneously maintain key relationships and provide caregiver support.

The effectiveness of an Internet support forum for carers of people with dementia: a pre-post cohort study.

PubMed

McKechnie, Vicky; Barker, Chris; Stott, Josh

2014-02-28

The well-being of informal carers of people with dementia is an important public health issue. Caring for an elderly relative with dementia may be burdensome and stressful, and can negatively affect the carer's social, family, and professional life. The combination of loss, the physical demands of caregiving, prolonged distress, and biological vulnerabilities of older carers may compromise their physical health, increase social isolation, and increase the risk of anxiety and depressive disorders. Caregiver stress is also linked to negative outcomes for the recipient of care and costs to society, including increased nursing home and hospital admissions. Consequently, carer support interventions are an important component of dementia care. Computer-mediated carer support offers a range of potential advantages compared to traditional face-to-face support groups, including accessibility and the possibility of tailoring to meet individual needs, but there has been little research on its effectiveness so far. This mixed-methods study examined the impact of a well-respected UK-based online support forum for carers of people with dementia. A total of 61 new forum users completed measures of anxiety (7-item Generalized Anxiety Disorder scale, GAD-7), depression (9-item Patient Health Questionnaire, PHQ-9), and quality of relationship with the person with dementia (Scale for the Quality of the Current Relationship in Caregiving, SQCRC), at baseline and again after 12 weeks of forum usage, within a pre-post design. In addition, 8 participants were interviewed about their experiences with using the forum. There was an improvement in the quality of the relationship with the person with dementia (SQCRC: P=.003). There was no change in users' depression (PHQ-9) or anxiety (GAD-7) over the 12-week study period. Interview participants reported a range of positive experiences and benefits from using the forum. Limited negative experiences were also reported. Many of the reported experiences and benefits are unique to online peer support. Further research into online peer support for carers of people with dementia is needed to clarify who benefits under what conditions.

The effectiveness of creating an online life story book on persons with early dementia and their informal caregivers: a protocol of a randomized controlled trial.

PubMed

Elfrink, Teuntje R; Zuidema, Sytse U; Kunz, Miriam; Westerhof, Gerben J

2017-04-21

Dementia has a high burden for patients, informal caregivers and society. Given changes in care systems, more persons with dementia will live longer at home. However, living at home (with dementia) with a good quality of life is not easy to achieve. Dementia is often accompanied by neuropsychiatric symptoms like apathy, agitation, depression, and anxiety, which have a negative impact on quality of life. Whereas cognitive deterioration can hardly be influenced, it is possible to reduce neuropsychiatric symptoms. As autobiographical memories remain intact for a relatively long time in dementia, reminiscence interventions can promote feelings of pleasure and trust. The Online Life Story Book (OLSB) allows to digitally share memories (stories, pictures, video or audio fragments). The main objective is to study the effects of the OLSB on neuropsychiatric symptoms. The study has four secondary objectives: 1) to study the effectiveness of the intervention on the burden and quality of life of the primary informal caregiver; 2) to provide a preliminary health-economic evaluation; 3) to study the (time to) nursing home admittance as a longer term effect; 4) to provide a process evaluation. A randomized controlled trial with individual randomization to one of two conditions is conducted: 1) intervention "Online Life Story Book"; 2) control condition (care as usual). Participants are persons with early dementia and their primary caregivers. In the intervention OLSB, a trained volunteer guides the participants through the process of putting together a timeline of their lives during 5 meetings within a period of 8-10 weeks. To assess the effects of the intervention on the primary outcome, neuropsychiatric symptoms, the Neuropsychiatric Inventory (NPI) will be assessed at three time points: before the intervention (baseline, T0), 3 months (T1) and 6 months (T2) post baseline. When proven effective, the Online Life Story Book can be a valuable addition to the existing provision of care for persons with dementia and their informal caregivers. This study has been approved by the Twente Medical Ethics Committee under the file number p16-04 (Dutch Trial Register: NTR5939 , date of registration: 14 March 2016).

Caring for people with dementia in hospital: findings from a survey to identify barriers and facilitators to implementing best practice dementia care.

PubMed

Tropea, Joanne; LoGiudice, Dina; Liew, Danny; Roberts, Carol; Brand, Caroline

2017-03-01

Best practice dementia care is not always provided in the hospital setting. Knowledge, attitudes and motivation, practitioner behavior, and external factors can influence uptake of best practice and quality care. The aim of this study was to determine hospital staff perceived barriers and enablers to implementing best practice dementia care. A 17-item survey was administered at two Australian hospitals between July and September 2014. Multidisciplinary staff working in the emergency departments and general medical wards were invited to participate in the survey. The survey collected data about the respondents' current role, work area, and years of experience, their perceived level of confidence and knowledge in dementia care and common symptoms of dementia, barriers and enablers to implementing best practice dementia care, job satisfaction in caring for people with dementia, and to rate the hospital's capacity and available resources to support best practice dementia care. A total of 112 survey responses were received. The environment, inadequate staffing levels and workload, time, and staff knowledge and skills were identified as barriers to implementing best practice dementia care. Most respondents rated their knowledge of dementia care and common symptoms of dementia, and confidence in recognizing whether a person has dementia, as moderate or high dementia. Approximately, half the respondents rated access to training and equipment as low or very low. The survey findings highlighted hospital staff perceived barriers to implementing best practice dementia care that can be used to inform locally tailored improvement interventions.

Parathyroid Hormone, Cognitive Function and Dementia: A Systematic Review

PubMed Central

Lourida, Ilianna; Thompson-Coon, Jo; Dickens, Chris M.; Soni, Maya; Kuźma, Elżbieta; Kos, Katarina; Llewellyn, David J.

2015-01-01

Background Metabolic factors are increasingly recognized to play an important role in the pathogenesis of Alzheimer’s disease and dementia. Abnormal parathyroid hormone (PTH) levels play a role in neuronal calcium dysregulation, hypoperfusion and disrupted neuronal signaling. Some studies support a significant link between PTH levels and dementia whereas others do not. Methods We conducted a systematic review through January 2014 to evaluate the association between PTH and parathyroid conditions, cognitive function and dementia. Eleven electronic databases and citation indexes were searched including Medline, Embase and the Cochrane Library. Hand searches of selected journals, reference lists of primary studies and reviews were also conducted along with websites of key organizations. Two reviewers independently screened titles and abstracts of identified studies. Data extraction and study quality were performed by one and checked by a second reviewer using predefined criteria. A narrative synthesis was performed due to the heterogeneity of included studies. Results The twenty-seven studies identified were of low and moderate quality, and challenging to synthesize due to inadequate reporting. Findings from six observational studies were mixed but suggest a link between higher serum PTH levels and increased odds of poor cognition or dementia. Two case-control studies of hypoparathyroidism provide limited evidence for a link with poorer cognitive function. Thirteen pre-post surgery studies for primary hyperparathyroidism show mixed evidence for improvements in memory though limited agreement in other cognitive domains. There was some degree of cognitive impairment and improvement postoperatively in observational studies of secondary hyperparathyroidism but no evident pattern of associations with specific cognitive domains. Conclusions Mixed evidence offers weak support for a link between PTH, cognition and dementia due to the paucity of high quality research in this area. PMID:26010883

Life review and life story books for people with mild to moderate dementia: a randomised controlled trial

PubMed Central

Subramaniam, Ponnusamy; Woods, Bob; Whitaker, Chris

2013-01-01

Objectives To evaluate the effect of different pathways for developing a life story book (LSB) for people with dementia. Method Preliminary randomised control trial; 23 people with dementia in care homes (mean age 86) randomly assigned to receive either 12 individual life review sessions and co-creating a LSB or a personal LSB created by their relatives as a ‘gift’ Results No difference in quality of life (quality of life–Alzheimer's disease (QOL–AD)) was observed between the two groups, six weeks after having received the LSB (F(1,20) = 0.08, p = 0.77). At this point, QOL–AD had improved for both groups, but there was a significant between-group difference at an intermediate assessment immediately after the life review sessions had been completed, before the LSBs were received (F(1, 20) = 5.11, p = 0.035), in favour of life review. A similar pattern was observed on autobiographical memory (extended autobiographical memory interview), with the life review group improving significantly more than the gift group during the life review sessions, but no difference was observed once all participants had had their LSB for six weeks. After the LSBs were produced – by either pathway – quality of relationship as rated by relatives improved significantly (F(2, 39) = 19.37, p < 0.001) and staff knowledge regarding the resident and attitudes to dementia improved. Conclusion The creation of LSBs – either through a life review process or by relatives without involving the person with dementia – has benefits for people with dementia, relatives and staff in care homes. However, undertaking a life review requires training and supervision. PMID:24063317

Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study.

PubMed

Kerpershoek, Liselot; de Vugt, Marjolein; Wolfs, Claire; Jelley, Hannah; Orrell, Martin; Woods, Bob; Stephan, Astrid; Bieber, Anja; Meyer, Gabriele; Engedal, Knut; Selbaek, Geir; Handels, Ron; Wimo, Anders; Hopper, Louise; Irving, Kate; Marques, Maria; Gonçalves-Pereira, Manuel; Portolani, Elisa; Zanetti, Orazio; Verhey, Frans

2016-08-23

Previous findings indicate that people with dementia and their informal carers experience difficulties accessing and using formal care services due to a mismatch between needs and service use. This mismatch causes overall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background and methods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practice development in finding timely access to formal care for community-dwelling people with dementia and their informal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the use of formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Compare these across European countries, 4) Understand the costs and consequences of formal care services utilization in people with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formal care services across European countries. In a longitudinal cohort study conducted in eight European countries approximately 450 people with dementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). In this year we will closely monitor the process of finding access to formal care. Data on service use, quality of life and needs will be collected. The results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledge about enabling and predisposing factors regarding access to care services, as well as its costs and consequences, can advance the state of the art in health systems research into pathways to dementia care, in order to benefit people with dementia and their informal carers.

Moments of joy and delight: the meaning of traditional food in dementia care.

PubMed

Hanssen, Ingrid; Kuven, Britt Moene

2016-03-01

To learn about the meaning of traditional food to institutionalised patients with dementia. Traditional food strengthens the feelings of belonging, identity and heritage, which help persons with dementia to hold on to and reinforce their cultural identity and quality of life. Taste is more cultural than physiological. Dietary habits are established early in life and may be difficult to change. Being served unfamiliar dishes may lead to disappointment and a feeling of being betrayed and unloved. The three studies presented have a qualitative design. In-depth interviews of family members and nurses experienced in dementia care were conducted in South Africa and among ethnic Norwegians and the Sami in Norway. Content-focused analysis, hermeneutic in character, was used to enable the exploration of the thoughts, feelings and cultural meaning described. Traditional foods created a feeling of belonging and joy. Familiar tastes and smells awoke pleasant memories in patients and boosted their sense of well-being, identity and belonging, even producing words in those who usually did not speak. In persons with dementia, dishes remembered from their childhood may help maintain and strengthen cultural identity, create joy and increase patients' feeling of belonging, being respected and cared for. Traditional food furthermore improves patients' appetite, nutritional intake and quality of life. To serve traditional meals in nursing homes demands extra planning and resources, traditional knowledge, creativity and knowledge of patients' personal tastes. This study provides insight into culture-sensitive dietary needs of institutionalised patients with dementia. The cultural significance of food for feeling contentment and social and physical well-being is discussed. Besides helping to avoid undernutrition, being served traditional dishes may be very important to reminiscence, joy, thriving and quality of life. © 2016 John Wiley & Sons Ltd.

The effectiveness of collaborative care for people with memory problems in primary care: results of the CAREDEM case management modelling and feasibility study.

PubMed

Iliffe, Steve; Waugh, Amy; Poole, Marie; Bamford, Claire; Brittain, Katie; Chew-Graham, Carolyn; Fox, Chris; Katona, Cornelius; Livingston, Gill; Manthorpe, Jill; Steen, Nick; Stephens, Barbara; Hogan, Vanessa; Robinson, Louise

2014-08-01

People with dementia and their families need support in different forms, but currently services are often fragmented with variable quality of care. Case management offers a way of co-ordinating services along the care pathway and therefore could provide individualised support; however, evidence of the effectiveness of case management for dementia is inconclusive. To adapt the intervention used in a promising case management project in the USA and test its feasibility and acceptability in English general practice. In work package 1, a design group of varied professionals, with a carer and staff from the voluntary sector, met six times over a year to identify the skills and personal characteristics required for case management; protocols from the US study were adapted for use in the UK. The feasibility of recruiting general practices and patient-carer dyads and of delivering case management were tested in a pilot study (work package 2). An embedded qualitative study explored stakeholder views on study procedures and case management. Four general practices, two in the north-east of England (Newcastle) one in London and one in Norfolk, took part in a feasibility pilot study of case management. Community-dwelling people with dementia and their carers who were not already being case managed by other services. A social worker shared by the two practices in the north-east and practice nurses in the other two practices were trained to deliver case management. We aimed to recruit 11 people with dementia from each practice who were not already being case managed. Numbers of people with dementia and their carers recruited, numbers and content of contacts, needs identified and perceptions of case management among stakeholders. Recruitment of practices and patients was slow and none of the practices achieved its recruitment target. It took more than 6 months to recruit a total of 28 people with dementia. Practice Quality and Outcome Framework registers for dementia contained only 60% of the expected number of people, most living in care homes. All stakeholders were positive about the potential of case management; however, only one of the four practices achieved a level of case management activity that might have influenced patient and carer outcomes. Case managers' activity levels were not related solely to time available for case management. Delivery of case management was hindered by limited clarity about the role, poor integration with existing services and a lack of embeddedness within primary care. There were discrepancies between case manager and researcher judgements about need, and evidence of a high threshold for acting on unmet need. The practice nurses experienced difficulties in ring-fencing case management time. The model of case management developed and evaluated in this feasibility study is unlikely to be sustainable in general practice under current conditions and in our view it would not be appropriate to attempt a definitive trial of this model. This study could inform the development of a case management role with a greater likelihood of impact. Different approaches to recruiting and training case managers, and identifying people with dementia who might benefit from case management, are needed, as is exploration of the scale of need for this type of working. Current Controlled Trials ISRCTN74015152. This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 18, No. 52. See the NIHR Journals Library website for further project information.

Depressive symptoms and depression in people screened positive for dementia in primary care - results of the DelpHi-study.

PubMed

Thyrian, Jochen René; Eichler, Tilly; Reimann, Melanie; Wucherer, Diana; Dreier, Adina; Michalowsky, Bernhard; Hoffmann, Wolfgang

2016-06-01

Dementia and depression are common syndromes in the elderly. There is lack of knowledge concerning the frequency of depressive symptoms in people with dementia (PWD) and factors associated with depression. The aim of this analysis is to (a) describe the frequency of depressive symptoms in people screened positive for dementia, (b) describe differences between PWD with and without depressive symptoms, and (c) analyze associations between depressive symptoms and other dementia-related variables. Analyses are based on data of the GP-based intervention trial DelpHi-MV. A sample of 430 (6.29%) people screened positive for dementia in primary care was analyzed regarding depression according to the German version of the Geriatric Depression Scale (GDS, 15-items), demographic variables, and dementia/depression-related variables. Multivariate analyses were conducted to identify factors associated with depressive symptoms. The mean GDS-score of depressive symptoms in n = 430 PWD was m = 3.21 (SD 2.45) with 67 PWD (15.55%) showing clinically relevant depression (GDS < 5) m = 7.71 (SD = 1.92). A total of n = 72 (16.74%) received a formal diagnosis of depression and n = 62 (14.42%) received antidepressive drug treatment. Depressive symptoms are significantly associated with age (OR = 0.93), functional impairment (OR = 1.36), and quality of life (OR = 0.01, CI: 0.00-0.06). Our results support previous findings that clinically relevant depressive symptoms are more common in people screened positive for dementia than in the general population and are often missed or mismanaged. Our findings underline the importance of managing quality of life, functional status, or depressive symptoms. Also, the results highlight the benefit of including the partner (and probably other carers) for adequate treatment of PWD.

Factors Concerning Veterans With Dementia, Their Caregivers, and Coordination of Care: A Systematic Literature Review.

PubMed

Mileski, Michael; Scott Kruse, Clemens; Brooks, Matthew; Haynes, Christine; Collingwood, Ying; Rodriguez, Rachel

2017-11-01

Military veterans diagnosed with dementia compose a large portion of our population. Often ignored are their caregivers and their plight as well as the availability, quality, and accessibility of health care for this demographic. The purpose of this systematic literature review is three fold: to identify opportunities available to increase public awareness on the subject; to identify areas of improvement in the level of care and quality of life for our nation's veterans; and to identify if adequate resources are available to veterans with dementia and their caregivers. The authors conducted systematic searches of three databases: PubMed via The National Center for Biotechnology Information, the Cumulative Index of Nursing and Allied Health Literature (CINAHL) Complete via Ebson B. Stephens Company (EBSCO Host), and Google. Data were collected regarding providing care to veterans who are suffering from dementia or Alzheimer's disease and their caregivers between 2008 and June 2016. Search results were filtered by date range, full text, English language, Boolean operators, and academic journals (n = 14). The review confirmed there are many facilitators and barriers in the coordination of care offered to veterans with dementia. Facilitators of quality care include veteran's expectations, family support, program development, and the availability of services. These positive aspects are aided by several community-based support services, new technology, and preventative care. Barriers are caregiver expectations, coordination of care, providers, and informal and formal costs. These negative facets are due to lack of educational resources, an increased veteran population diagnosed with dementia, limited knowledge of resources, and limited medical service in rural areas. Overall, there are a number of community programs that want to, and can, help veterans with dementia. There are also a number of ways to help veterans with dementia cope with their issues, which include technology and preventative care. Veterans are hindered from receiving help with their dementia concerns due to most veteran's dependence on the Veterans Affairs (VA) for health services, a lack of education about possible treatments and programs, and a lack of services in rural areas. This review will prove useful to providers when evaluating the expansion of VA services and caregiver interventions. Reprint & Copyright © 2017 Association of Military Surgeons of the U.S.

Using drama to improve person-centred dementia care.

PubMed

Kontos, Pia C; Mitchell, Gail J; Mistry, Bhavnita; Ballon, Bruce

2010-06-01

We implemented a 12-week drama-based educational intervention to introduce to dementia practitioners person-centred care that emphasizes the notion of embodied selfhood (defined as non-verbal self-expression). Person-centred dementia care guidelines emphasize the assessment of individual needs, and where appropriate, the use of non-pharmacological interventions before resorting to pharmacological management. However, dementia care is not consistent with these guidelines suggesting conceptual limitations and reliance on passive knowledge translation strategies. Focus groups and semi-structured interviews with practitioners (n = 24) in two nursing homes in central Canada were undertaken to assess the effectiveness of the drama-based components of the intervention. Our findings suggest that drama was effective as an educational modality, and helped implement the person-centred approach into practice. Significant practice outcomes included: new awareness that residents' body movements and dispositions can convey meaning; seeking biographical information from families; increased time efficiency; and supporting residents' independence. Our findings make an important contribution to person-centred dementia care by broadening the notion of personhood, and by facilitating implementation using drama. As an enhancement of person-centred care, the support of embodied selfhood may significantly improve residents' quality of life, quality of care, and practitioners' care-giving experience. © 2010 Blackwell Publishing Ltd.

Teaching dementia care to physical therapy doctoral students: A multimodal experiential learning approach.

PubMed

Lorio, Anne K; Gore, Jane B; Warthen, Lindsey; Housley, Stephen N; Burgess, Elisabeth O

2017-01-01

As the population aged 65 and older grows, it becomes imperative for health care providers to expand their knowledge regarding geriatric conditions and concerns. Dementia is a devastating degenerative disease process that is affecting millions of individuals in the United States, with significant economic and emotional burden on family and caregivers. The need for further dementia education in physical therapy school is essential to improve attitudes and treatment that affect patient outcomes and quality of care. This physical therapy program implemented a 12-hour multimodal experiential learning module designed to educate their students on the challenges associated with dementia to increase knowledge and confidence when treating these patients. The results of this study showed statistically significant improvements in overall confidence and knowledge of treating patients with dementia. The study finds the addition of experiential learning to traditional didactic coursework improves students' reported confidence in working with patients with dementia and understanding the challenges associated with treating patients with dementia.

Personal Strengths and Health Related Quality of Life in Dementia Caregivers from Latin America

PubMed Central

Trapp, Stephen K.; Perrin, Paul B.; Aggarwal, Richa; Peralta, Silvina Victoria; Stolfi, Miriam E.; Morelli, Eliana; Peña Obeso, Leticia Aracely; Arango-Lasprilla, Juan Carlos

2015-01-01

The research literature has begun to demonstrate associations between personal strengths and enhanced psychosocial functioning of dementia caregivers, but these relationships have not been examined in the context of dementia caregivers in Latin America. The present study examined whether personal strengths, including resilience, optimism, and sense of coherence, were associated with mental and physical health related quality of life (HRQOL) in 130 dementia caregivers in Mexico and Argentina. Structural equation modeling found that the personal strengths collectively accounted for 58.4% of the variance in caregiver mental HRQOL, and resilience, sense of coherence, and optimism each had unique effects. In comparison, the personal strengths together accounted for 8.9% of the variance in caregiver physical HRQOL, and only sense of coherence yielded a unique effect. These results underscore the need to construct and disseminate empirically supported interventions based in part on important personal strengths, particularly sense of coherence, for this underrepresented group. PMID:26160998

Effects of a Creative Expression Intervention on Emotions, Communication, and Quality of Life in Persons with Dementia

PubMed Central

Phillips, Lorraine J.; Reid-Arndt, Stephanie A.; Pak, Youngju

2010-01-01

Background Effective nonpharmacological interventions are needed to treat neuropsychiatric symptoms and improve quality of life for the 5.3 million Americans affected by dementia. Objective To test the effect of a storytelling program, TimeSlips, on communication, neuropsychiatric symptoms, and quality of life in long-term care residents with dementia. Method A quasi-experimental, two-group, repeated measures design was used to compare persons with dementia who were assigned to the twice-weekly, 6-week TimeSlips intervention (n = 28) or usual care (n = 28) group at baseline and postintervention at Weeks 7 and 10. Outcome measures included the Cornell Scale for Depression in Dementia, Neuropsychiatric Inventory-Nursing Home Version, Functional Assessment of Communication Skills, Quality of Life–AD, and Observed Emotion Rating Scale (this last measure was collected also at Weeks 3 and 6 during TimeSlips for the treatment group and during mealtime for the control group). Results Compared to the control group, the treatment group exhibited significantly higher pleasure at Week 3 (p < .001), Week 6 (p < .001), and Week 7 (p < .05). Small to moderate treatment effects were found for Week 7 Social Communication (d = .49) and Basic Needs Communication (d = .43). A larger effect was found for pleasure at Week 7 (d = .58). Discussion As expected given the engaging nature of the TimeSlips creative story-telling intervention, analyses revealed increased positive affect during and at 1-week post-intervention. In addition, perhaps associated with the intervention’s reliance on positive social interactions and verbal communication, participants evidenced improved communication skills. However, more frequent dosing and booster sessions of TimeSlips may be needed to show significant differences between treatment and control groups on long-term effects and other outcomes. PMID:21048483

Quality of life in patients with cognitive impairment: validation of the Quality of Life-Alzheimer's Disease scale in Portugal.

PubMed

Bárrios, Helena; Verdelho, Ana; Narciso, Sofia; Gonçalves-Pereira, Manuel; Logsdon, Rebecca; de Mendonça, Alexandre

2013-07-01

Quality of Life-Alzheimer's Disease (QOL-AD) is a widely used scale for the study of quality of life in patients with dementia. The aim of this study is the transcultural adaptation and validation of the QOL-AD scale in Portugal. Translation and transcultural adaptation was performed according to state-of-the-art recommendations. For the validation study, 104 patient/caregiver pairs were enrolled. Patients had mild cognitive impairment or mild-to-moderate dementia (due to Alzheimer's disease or vascular dementia). Participants were recruited in a dementia outpatient clinic setting and a long-term care dementia ward. An additional comparison group of 22 patients without cognitive impairment, and their proxies, was recruited in a family practice outpatient clinic. Sociodemographic information on patients and caregivers was obtained. Acceptability, reliability, and construct validity were analyzed. Internal consistency of the Portuguese version of QOL-AD was good for both patient and caregiver report (Cronbach's α = 0.867 and 0.858, respectively). Construct validity was confirmed by the correlation of patient reported QOL-AD with patient geriatric depression scale scores (ρ = -0.702, p < 0.001) and satisfaction with life scale scores (ρ = 0.543, p < 0.001). Caregiver ratings were correlated with neuropsychiatric inventory (NPI) total score (ρ = -0.404, p < 0.001), NPI-distress (ρ = -0.346, p < 0.001), and patient Mini-Mental State Examination (ρ = 0.319, p < 0.01). QOL-AD patient ratings were higher than caregiver ratings (p < 0.001). Both patient- and caregiver-rated QOL-AD scores were lower in patients with cognitive impairment than in the comparison group without cognitive impairment (p < 0.01). A Portuguese version of QOL-AD with consistent psychometric properties was obtained and is proposed as a useful tool for research and clinical purposes.

Effects of a creative expression intervention on emotions, communication, and quality of life in persons with dementia.

PubMed

Phillips, Lorraine J; Reid-Arndt, Stephanie A; Pak, Youngju

2010-01-01

Effective nonpharmacological interventions are needed to treat neuropsychiatric symptoms and to improve quality of life for the 5.3 million Americans affected by dementia. The purpose of this study was to test the effect of a storytelling program, TimeSlips, on communication, neuropsychiatric symptoms, and quality of life in long-term care residents with dementia. A quasi-experimental, two-group, repeated measures design was used to compare persons with dementia who were assigned to the twice-weekly, 6-week TimeSlips intervention group (n = 28) or usual care group (n = 28) at baseline and postintervention at Weeks 7 and 10. Outcome measures included the Cornell Scale for Depression in Dementia, the Neuropsychiatric Inventory-Nursing Home Version, the Functional Assessment of Communication Skills, the Quality of Life-Alzheimer's Disease, and the Observed Emotion Rating Scale (this last measure was collected also at Weeks 3 and 6 during TimeSlips for the treatment group and during mealtime for the control group). Compared with the control group, the treatment group exhibited significantly higher pleasure at Week 3 (p < .001), Week 6 (p < .001), and Week 7 (p < .05). Small to moderate treatment effects were found for Week 7 social communication (d = .49) and basic needs communication (d = .43). A larger effect was found for pleasure at Week 7 (d = .58). As expected, given the engaging nature of the TimeSlips creative storytelling intervention, analyses revealed increased positive affect during and at 1 week postintervention. In addition, perhaps associated with the intervention's reliance on positive social interactions and verbal communication, participants evidenced improved communication skills. However, more frequent dosing and booster sessions of TimeSlips may be needed to show significant differences between treatment and control groups on long-term effects and other outcomes.

Art and the brain: a view from dementia.

PubMed

Gretton, Cosima; ffytche, Dominic H

2014-02-01

Art making encompasses a range of perceptual and cognitive functions involving widely distributed brain systems. The dementias impact on these systems in different ways, raising the possibility that each dementia has a unique artistic signature. Here we use a review of the visual art of 14 artists with dementia (five Alzheimer's disease, seven fronto-temporal dementia and two dementia with Lewy bodies) to further our understanding of the neurobiological constituents of art production and higher artistic function. Artists with Alzheimer's disease had prominent changes in spatial aspects of their art and attributes of colour and contrast. These qualities were preserved in the art of fronto-temporal dementia, which was characterised by perseverative themes and a shift towards realistic representation. The art of dementia with Lewy Bodies was characterised by simple, bizarre content. The limitations of using visual aspects of individual artworks to infer the impact of dementia on art production are discussed with the need for a wider perspective encompassing changes in cognition, emotion, creativity and artistic personality. A novel classificatory scheme is presented to help characterise neural mechanisms of higher artistic functions in future studies. Copyright © 2013 John Wiley & Sons, Ltd.

The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial.

PubMed

Orrell, Martin; Yates, Lauren; Leung, Phuong; Kang, Sujin; Hoare, Zoe; Whitaker, Chris; Burns, Alistair; Knapp, Martin; Leroi, Iracema; Moniz-Cook, Esme; Pearson, Stephen; Simpson, Stephen; Spector, Aimee; Roberts, Steven; Russell, Ian; de Waal, Hugo; Woods, Robert T; Orgeta, Vasiliki

2017-03-01

Cognitive stimulation therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (well-being) for the caregiver. A single-blind, pragmatic randomised controlled trial (RCT) was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants' homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs). Participants were randomly assigned to iCST (75, 30-min sessions) or treatment as usual (TAU) control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer's Disease Assessment Scale-cognitive [ADAS-Cog]) and self-reported QoL (Quality of Life Alzheimer's Disease [QoL-AD]) for the person with dementia and general health status (Short Form-12 health survey [SF-12]) for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale) and health-related QoL (European Quality of Life-5 Dimensions [EQ-5D]) for the caregiver. Intention to treat (ITT) analyses were conducted. At the post-test (26 wk), there were no differences between the iCST and TAU groups in the outcomes of cognition (mean difference [MD] = -0.55, 95% CI -2.00-0.90; p = 0.45) and self-reported QoL (MD = -0.02, 95% CI -1.22-0.82; p = 0.97) for people with dementia, or caregivers' general health status (MD = 0.13, 95% CI -1.65-1.91; p = 0.89). However, people with dementia receiving iCST rated the relationship with their caregiver more positively (MD = 1.77, 95% CI 0.26-3.28; p = 0.02), and iCST improved QoL for caregivers (EQ-5D, MD = 0.06, 95% CI 0.02-0.10; p = 0.01). Forty percent (72/180) of dyads allocated to iCST completed at least two sessions per week, with 22% (39/180) completing no sessions at all. Study limitations include low adherence to the intervention. There was no evidence that iCST has an effect on cognition or QoL for people with dementia. However, participating in iCST appeared to enhance the quality of the caregiving relationship and caregivers' QoL. The iCST trial is registered with the ISRCTN registry (identified ISRCTN 65945963, URL: DOI 10.1186/ISRCTN65945963).

Development of a Daily Life Support System for Elderly Persons with Dementia in the Care Facility.

PubMed

Takahashi, Yoshiyuki; Kawai, Toshihiro; Komeda, Takashi

2015-01-01

Taking care for dementia persons with BPSD is burdening on caregivers. To reduce caregivers' burdens and improve dementia persons' quality of life, monitoring and communication intervention system has been proposed. A part of the system, wandering and falling down detection system has been developed. It is designed based on the requirement of the caregivers working in the care facility. Functional test was carried out and had positive impressions from the caregivers.

Down syndrome and dementia: Is depression a confounder for accurate diagnosis and treatment?

PubMed

Wark, Stuart; Hussain, Rafat; Parmenter, Trevor

2014-12-01

The past century has seen a dramatic improvement in the life expectancy of people with Down syndrome. However, research has shown that individuals with Down syndrome now have an increased likelihood of early onset dementia. They are more likely than their mainstream peers to experience other significant co-morbidities including mental health issues such as depression. This case study reports a phenomenon in which three individuals with Down syndrome and dementia are described as experiencing a rebound in their functioning after a clear and sustained period of decline. It is hypothesized that this phenomenon is not actually a reversal of the expected dementia trajectory but is an undiagnosed depression exaggerating the true level of functional decline associated with the dementia. The proactive identification and treatment of depressive symptoms may therefore increase the quality of life of some people with Down syndrome and dementia. © The Author(s) 2014.

"The Church of Online Support": Examining the Use of Blogs Among Family Caregivers of Persons With Dementia.

PubMed

Anderson, Joel G; Hundt, Elizabeth; Dean, Morgan; Keim-Malpass, Jessica; Lopez, Ruth Palan

2017-02-01

Many individuals, including dementia caregivers, use blogs to share their experiences. These blogs contain rich narratives representing an untapped resource for understanding the psychosocial impact of caring for a person with dementia at the family level. The present study used blogs written by caregivers of persons with dementia to explore how these individuals leveraged this medium as part of the caregiving experience. Blogs written by self-identified informal caregivers of persons with dementia were identified using a systematic search method, and data were analyzed using a qualitative thematic analysis. Four themes emerged from the narratives: social support through communication and engagement, information gathering and seeking, reminiscing and legacy building, and altruism. By understanding the ways in which individuals providing care for persons with dementia use social media as part of the caregiving experience, family nurses can develop interventions and services aimed at improving caregiver burden and quality of life.

Test Accuracy of Informant-Based Cognitive Screening Tests for Diagnosis of Dementia and Multidomain Cognitive Impairment in Stroke.

PubMed

McGovern, Aine; Pendlebury, Sarah T; Mishra, Nishant K; Fan, Yuhua; Quinn, Terence J

2016-02-01

Poststroke cognitive assessment can be performed using standardized questionnaires designed for family or care givers. We sought to describe the test accuracy of such informant-based assessments for diagnosis of dementia/multidomain cognitive impairment in stroke. We performed a systematic review using a sensitive search strategy across multidisciplinary electronic databases. We created summary test accuracy metrics and described reporting and quality using STARDdem and Quality Assessment of Diagnostic Accuracy Studies (QUADAS) tools, respectively. From 1432 titles, we included 11 studies. Ten papers used the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE). Four studies described IQCODE for diagnosis of poststroke dementia (n=1197); summary sensitivity: 0.81 (95% confidence interval, 0.60-0.93); summary specificty: 0.83 (95% confidence interval, 0.64-0.93). Five studies described IQCODE as tool for predicting future dementia (n=837); summary sensitivity: 0.60 (95% confidence interval, 0.32-0.83); summary specificity: 0.97 (95% confidence interval, 0.70-1.00). All papers had issues with at least 1 aspect of study reporting or quality. There is a limited literature on informant cognitive assessments in stroke. IQCODE as a diagnostic tool has test properties similar to other screening tools, IQCODE as a prognostic tool is specific but insensitive. We found no papers describing test accuracy of informant tests for diagnosis of prestroke cognitive decline, few papers on poststroke dementia and all included papers had issues with potential bias. © 2015 American Heart Association, Inc.

Research on treating neuropsychiatric symptoms of advanced dementia with non-pharmacological strategies, 1998–2008: a systematic literature review

PubMed Central

Kverno, Karan S.; Black, Betty S.; Nolan, Marie T.; Rabins, Peter V.

2011-01-01

Background Advanced dementia is characterized by severe cognitive and functional impairments that lead to almost total dependency in self-care. Neuropsychiatric symptoms (NPS) are common in advanced dementia, diminishing quality of life and increasing the care burden. The challenge for health care providers is to find safe and effective treatments. Non-pharmacological interventions offer the potential for safer alternatives to pharmacotherapy, but little is known about their efficacy. This review evaluates the published literature on non-pharmacological interventions for treating NPS in advanced dementia. Methods A literature search was undertaken to find non-pharmacological intervention studies published between 1998 and 2008 that measured NPS outcomes in individuals diagnosed with advanced dementia. Strict inclusion criteria initially required that all study participants have severe or very severe dementia, but this range was later broadened to include moderately severe to very severe stages. Results Out of 215 intervention studies, 21 (9.8%) specifically focused on treatments for individuals with moderately severe to very severe dementia. The studies provide limited moderate to high quality evidence for the use of sensory-focused strategies, including aroma, preferred or live music, and multi-sensory stimulation. Emotion-oriented approaches, such as simulated presence may be more effective for individuals with preserved verbal interactive capacity. Conclusions Most studies of interventions for dementia-related NPS have focused on individuals with mild to moderate cognitive impairment. Individuals with severe cognitive impairment do not necessarily respond to NPS treatments in the same manner. Future studies should be specifically designed to further explore the stage-specific efficacy of non-pharmacological therapies for patients with advanced dementia. Areas of particular need for further research include movement-based therapies, hands-on (touch) therapies, and interventions that can be provided during personal care routines. Interventions appear to work best when they are tailored to balance individual arousal patterns. PMID:19586562

Research on treating neuropsychiatric symptoms of advanced dementia with non-pharmacological strategies, 1998-2008: a systematic literature review.

PubMed

Kverno, Karan S; Black, Betty S; Nolan, Marie T; Rabins, Peter V

2009-10-01

Advanced dementia is characterized by severe cognitive and functional impairments that lead to almost total dependency in self-care. Neuropsychiatric symptoms (NPS) are common in advanced dementia, diminishing quality of life and increasing the care burden. The challenge for health care providers is to find safe and effective treatments. Non-pharmacological interventions offer the potential for safer alternatives to pharmacotherapy, but little is known about their efficacy. This review evaluates the published literature on non-pharmacological interventions for treating NPS in advanced dementia. A literature search was undertaken to find non-pharmacological intervention studies published between 1998 and 2008 that measured NPS outcomes in individuals diagnosed with advanced dementia. Strict inclusion criteria initially required that all study participants have severe or very severe dementia, but this range was later broadened to include moderately severe to very severe stages. Out of 215 intervention studies, 21 (9.8%) specifically focused on treatments for individuals with moderately severe to very severe dementia. The studies provide limited moderate to high quality evidence for the use of sensory-focused strategies, including aroma, preferred or live music, and multi-sensory stimulation. Emotion-oriented approaches, such as simulated presence may be more effective for individuals with preserved verbal interactive capacity. Most studies of interventions for dementia-related NPS have focused on individuals with mild to moderate cognitive impairment. Individuals with severe cognitive impairment do not necessarily respond to NPS treatments in the same manner. Future studies should be specifically designed to further explore the stage-specific efficacy of non-pharmacological therapies for patients with advanced dementia. Areas of particular need for further research include movement-based therapies, hands-on (touch) therapies, and interventions that can be provided during personal care routines. Interventions appear to work best when they are tailored to balance individual arousal patterns.

Study protocol: EXERcise and cognition in sedentary adults with early-ONset dementia (EXERCISE-ON).

PubMed

Hooghiemstra, Astrid M; Eggermont, Laura H P; Scheltens, Philip; van der Flier, Wiesje M; Bakker, Jet; de Greef, Mathieu H G; Koppe, Peter A; Scherder, Erik J A

2012-08-16

Although the development of early-onset dementia is a radical and invalidating experience for both patient and family there are hardly any non-pharmacological studies that focus on this group of patients. One type of a non-pharmacological intervention that appears to have a beneficial effect on cognition in older persons without dementia and older persons at risk for dementia is exercise. In view of their younger age early-onset dementia patients may be well able to participate in an exercise program. The main aim of the EXERCISE-ON study is to assess whether exercise slows down the progressive course of the symptoms of dementia. One hundred and fifty patients with early-onset dementia are recruited. After completion of the baseline measurements, participants living within a 50 kilometre radius to one of the rehabilitation centres are randomly assigned to either an aerobic exercise program in a rehabilitation centre or a flexibility and relaxation program in a rehabilitation centre. Both programs are applied three times a week during 3 months. Participants living outside the 50 kilometre radius are included in a feasibility study where participants join in a daily physical activity program set at home making use of pedometers. Measurements take place at baseline (entry of the study), after three months (end of the exercise program) and after six months (follow-up). Primary outcomes are cognitive functioning; psychomotor speed and executive functioning; (instrumental) activities of daily living, and quality of life. Secondary outcomes include physical, neuropsychological, and rest-activity rhythm measures. The EXERCISE-ON study is the first study to offer exercise programs to patients with early-onset dementia. We expect this study to supply evidence regarding the effects of exercise on the symptoms of early-onset dementia, influencing quality of life. The present study is registered within The Netherlands National Trial Register (ref: NTR2124).

Study protocol: EXERcise and Cognition In Sedentary adults with Early-ONset dementia (EXERCISE-ON)

PubMed Central

2012-01-01

Background Although the development of early-onset dementia is a radical and invalidating experience for both patient and family there are hardly any non-pharmacological studies that focus on this group of patients. One type of a non-pharmacological intervention that appears to have a beneficial effect on cognition in older persons without dementia and older persons at risk for dementia is exercise. In view of their younger age early-onset dementia patients may be well able to participate in an exercise program. The main aim of the EXERCISE-ON study is to assess whether exercise slows down the progressive course of the symptoms of dementia. Methods/Design One hundred and fifty patients with early-onset dementia are recruited. After completion of the baseline measurements, participants living within a 50 kilometre radius to one of the rehabilitation centres are randomly assigned to either an aerobic exercise program in a rehabilitation centre or a flexibility and relaxation program in a rehabilitation centre. Both programs are applied three times a week during 3 months. Participants living outside the 50 kilometre radius are included in a feasibility study where participants join in a daily physical activity program set at home making use of pedometers. Measurements take place at baseline (entry of the study), after three months (end of the exercise program) and after six months (follow-up). Primary outcomes are cognitive functioning; psychomotor speed and executive functioning; (instrumental) activities of daily living, and quality of life. Secondary outcomes include physical, neuropsychological, and rest-activity rhythm measures. Discussion The EXERCISE-ON study is the first study to offer exercise programs to patients with early-onset dementia. We expect this study to supply evidence regarding the effects of exercise on the symptoms of early-onset dementia, influencing quality of life. Trial registration The present study is registered within The Netherlands National Trial Register (ref: NTR2124) PMID:22897903

Technologies to Support Community-Dwelling Persons With Dementia: A Position Paper on Issues Regarding Development, Usability, Effectiveness and Cost-Effectiveness, Deployment, and Ethics

PubMed Central

Innes, Anthea; Mountain, Gail; Robinson, Louise; van der Roest, Henriëtte; García-Casal, J Antonio; Gove, Dianne; Thyrian, Jochen René; Evans, Shirley; Dröes, Rose-Marie; Kelly, Fiona; Kurz, Alexander; Casey, Dympna; Szcześniak, Dorota; Dening, Tom; Craven, Michael P; Span, Marijke; Felzmann, Heike; Tsolaki, Magda; Franco-Martin, Manuel

2017-01-01

Background With the expected increase in the numbers of persons with dementia, providing timely, adequate, and affordable care and support is challenging. Assistive and health technologies may be a valuable contribution in dementia care, but new challenges may emerge. Objective The aim of our study was to review the state of the art of technologies for persons with dementia regarding issues on development, usability, effectiveness and cost-effectiveness, deployment, and ethics in 3 fields of application of technologies: (1) support with managing everyday life, (2) support with participating in pleasurable and meaningful activities, and (3) support with dementia health and social care provision. The study also aimed to identify gaps in the evidence and challenges for future research. Methods Reviews of literature and expert opinions were used in our study. Literature searches were conducted on usability, effectiveness and cost-effectiveness, and ethics using PubMed, Embase, CINAHL, and PsycINFO databases with no time limit. Selection criteria in our selected technology fields were reviews in English for community-dwelling persons with dementia. Regarding deployment issues, searches were done in Health Technology Assessment databases. Results According to our results, persons with dementia want to be included in the development of technologies; there is little research on the usability of assistive technologies; various benefits are reported but are mainly based on low-quality studies; barriers to deployment of technologies in dementia care were identified, and ethical issues were raised by researchers but often not studied. Many challenges remain such as including the target group more often in development, performing more high-quality studies on usability and effectiveness and cost-effectiveness, creating and having access to high-quality datasets on existing technologies to enable adequate deployment of technologies in dementia care, and ensuring that ethical issues are considered an important topic for researchers to include in their evaluation of assistive technologies. Conclusions Based on these findings, various actions are recommended for development, usability, effectiveness and cost-effectiveness, deployment, and ethics of assistive and health technologies across Europe. These include avoiding replication of technology development that is unhelpful or ineffective and focusing on how technologies succeed in addressing individual needs of persons with dementia. Furthermore, it is suggested to include these recommendations in national and international calls for funding and assistive technology research programs. Finally, practitioners, policy makers, care insurers, and care providers should work together with technology enterprises and researchers to prepare strategies for the implementation of assistive technologies in different care settings. This may help future generations of persons with dementia to utilize available and affordable technologies and, ultimately, to benefit from them. PMID:28582262

Inadequate Diagnostic Evaluation in Young Patients Registered with a Diagnosis of Dementia: A Nationwide Register-Based Study

PubMed Central

Salem, Lise Cronberg; Andersen, Birgitte Bo; Nielsen, T. Rune; Stokholm, Jette; Jørgensen, Martin Balslev; Waldemar, Gunhild

2014-01-01

Background Establishing a diagnosis of dementia in young patients may be complex and have significant implications for the patient. The aim of this study was to evaluate the quality of the diagnostic work-up in young patients diagnosed with dementia in the clinical routine. Methods Two hundred patients were randomly selected from 891 patients aged ≤65 years registered with a diagnosis of dementia for the first time in 2008 in Danish hospitals, and 159 medical records were available for review. Three raters evaluated their medical records for the completeness of the diagnostic work-up on which the diagnosis of dementia had been based, using evidence-based guidelines for the diagnostic evaluation of dementia as reference standards. Results According to the rater review, only 111 (70%) patients met the clinical criteria for dementia. An acceptable diagnostic work-up including all items of recommended basic diagnostic evaluation was performed in only 24%, although more often (28%) in the subgroup of patients where dementia was confirmed by raters. Conclusion This first nationwide study of unselected young patients registered with a diagnosis of dementia indicated that the concept of dementia may be misinterpreted by clinicians and that a diagnosis of dementia in the young is only rarely based on a complete basic diagnostic work-up, calling for increased competency. PMID:24711812

Goal-oriented cognitive rehabilitation in early-stage dementia: study protocol for a multi-centre single-blind randomised controlled trial (GREAT)

PubMed Central

2013-01-01

Background Preliminary evidence suggests that goal-oriented cognitive rehabilitation (CR) may be a clinically effective intervention for people with early-stage Alzheimer’s disease, vascular or mixed dementia and their carers. This study aims to establish whether CR is a clinically effective and cost-effective intervention for people with early-stage dementia and their carers. Methods/design In this multi-centre, single-blind randomised controlled trial, 480 people with early-stage dementia, each with a carer, will be randomised to receive either treatment as usual or cognitive rehabilitation (10 therapy sessions over 3 months, followed by 4 maintenance sessions over 6 months). We will compare the effectiveness of cognitive rehabilitation with that of treatment as usual with regard to improving self-reported and carer-rated goal performance in areas identified as causing concern by people with early-stage dementia; improving quality of life, self-efficacy, mood and cognition of people with early-stage dementia; and reducing stress levels and ameliorating quality of life for carers of participants with early-stage dementia. The incremental cost-effectiveness of goal-oriented cognitive rehabilitation compared to treatment as usual will also be examined. Discussion If the study confirms the benefits and cost-effectiveness of cognitive rehabilitation, it will be important to examine how the goal-oriented cognitive rehabilitation approach can most effectively be integrated into routine health-care provision. Our aim is to provide training and develop materials to support the implementation of this approach following trial completion. Trial registration Current Controlled Trials ISRCTN21027481 PMID:23710796

Therapeutic Touch in the Management of Responsive Behavior in Patients With Dementia.

PubMed

Kumarappah, Ananthavalli; Senderovich, Helen

2016-01-01

Patients with dementia experience various behavioral symptoms in the course of their illnesses, which greatly affect their quality of life. Current treatment modalities are not always effective, and, thus, nonpharmacological approaches are the preferred first-line therapy for managing such symptoms. They generally address the basic needs of the person with dementia and provide humane care, often producing noticeable improvements in symptoms. Thus, such therapies should precede pharmacological interventions. The following literature review of 5 publications from 2010 to 2015 evaluates the use of therapeutic touch (TT) in the management of responsive behavior in patients with dementia. The results of the review suggest that TT may be beneficial in reducing agitation in individuals with dementia; however, further research is needed to assess the use of TT.

Cognitive stimulation therapy as a low-resource intervention for dementia in sub-Saharan Africa (CST-SSA): Adaptation for rural Tanzania and Nigeria.

PubMed

Mkenda, Sarah; Olakehinde, Olaide; Mbowe, Godfrey; Siwoku, Akeem; Kisoli, Aloyce; Paddick, Stella-Maria; Adediran, Babatunde; Gray, William K; Dotchin, Catherine L; Adebiyi, Akinpelumi; Walker, Richard W; Mushi, Declare; Ogunniyi, Adesola

2016-06-21

Cognitive stimulation therapy is a non-pharmacological intervention for people with dementia. Its use has been associated with substantial improvements in cognition and quality of life in studies from high-income countries, equivalent to those achieved by pharmacological treatments. Cognitive stimulation therapy may be particularly suited to low resource settings, such as sub-Saharan Africa, because it requires little specialist equipment and can be delivered by non-specialist health workers. The aim of this study was to adapt cognitive stimulation therapy for use in sub-Saharan Africa taking into account socio-cultural differences and resource implications. Cognitive stimulation therapy is a structured programme, originally developed in the United Kingdom. Substantial adaptations were required for use in sub-Saharan Africa. The formative method for adapting psychotherapy was used as a framework for the adaption process. The feasibility of using the adapted cognitive stimulation therapy programme to manage dementia was assessed in Tanzania and Nigeria in November 2013. Further adaptations were made following critical appraisal of feasibility. The adapted cognitive stimulation therapy intervention appeared feasible and acceptable to participants and carers. Key adaptations included identification of suitable treatment settings, task adaptation to accommodate illiteracy and uncorrected sensory impairment, awareness of cultural differences and usage of locally available materials and equipment to ensure sustainability. Cognitive stimulation therapy was successfully adapted for use in sub-Saharan Africa. Future work will focus on a trial of cognitive stimulation therapy in each setting. © The Author(s) 2016.

The importance of music for people with dementia: the perspectives of people with dementia, family carers, staff and music therapists.

PubMed

McDermott, Orii; Orrell, Martin; Ridder, Hanne Mette

2014-01-01

Despite the popularity of music-based interventions in dementia care, there is a limited knowledge of how and why people with dementia find music beneficial for their well-being. A qualitative study was conducted to develop further insights into the musical experiences of people with dementia and explore the meaning of music in their lives. Separate focus groups and interviews with (1) care home residents with dementia and their families, (2) day hospital clients with dementia, (3) care home staff, and (4) music therapists, were conducted. The findings of the thematic analysis were investigated further in the light of psychosocial factors with the aim of developing a theoretical model on music in dementia. Six key themes were identified. The accessibility of music for people at all stages of dementia, close links between music, personal identity and life events, the importance of relationship-building through music making were particularly highlighted as valuable. The psychosocial model of music in dementia was developed. The model revealed the importance of music to support the personal psychology of people with dementia and the social psychology of the care home environment. The effects of music go beyond the reduction of behavioural and psychological symptoms. Individual preference of music is preserved throughout the process of dementia. Sustaining musical and interpersonal connectedness would help value who the person is and maintain the quality of their life.

The importance of music for people with dementia: the perspectives of people with dementia, family carers, staff and music therapists

PubMed Central

McDermot, Orii; Orrell, Martin; Ridder, Hanne Mette

2014-01-01

Objectives Despite the popularity of music-based interventions in dementia care, there is a limited knowledge of how and why people with dementia find music beneficial for their well-being. A qualitative study was conducted to develop further insights into the musical experiences of people with dementia and explore the meaning of music in their lives. Method Separate focus groups and interviews with (1) care home residents with dementia and their families, (2) day hospital clients with dementia, (3) care home staff, and (4) music therapists, were conducted. The findings of the thematic analysis were investigated further in the light of psychosocial factors with the aim of developing a theoretical model on music in dementia. Results Six key themes were identified. The accessibility of music for people at all stages of dementia, close links between music, personal identity and life events, the importance of relationship-building through music making were particularly highlighted as valuable. The psychosocial model of music in dementia was developed. The model revealed the importance of music to support the personal psychology of people with dementia and the social psychology of the care home environment. Conclusion The effects of music go beyond the reduction of behavioural and psychological symptoms. Individual preference of music is preserved throughout the process of dementia. Sustaining musical and interpersonal connectedness would help value who the person is and maintain the quality of their life. PMID:24410398

Is electroconvulsive therapy (ECT) effective and safe for treatment of depression in dementia? A short review.

PubMed

Oudman, Erik

2012-03-01

Depression is one of the most frequently diagnosed psychiatric disorders in patients with dementia with a prevalence of up to 50%. The detrimental effects of depression in dementia include disability in daily living, worse quality of life, and faster cognitive decline. Although electroconvulsive therapy (ECT) is a well-established and effective treatment for depression in the elderly, it is currently an overlooked treatment option in the elderly with dementia and depression. The aim of this review was to provide a critical analysis of the efficacy and safety of ECT in depression superimposed on dementia by reviewing the current literature on this topic. Current evidence suggests that ECT is an effective treatment for depression in dementia, although the relatively small number of controlled studies hampers the comparison of effectiveness between healthy nongeriatric patients and those with dementia. Moreover, the systematic reports on cognitive side effects are very limited in number and currently only apply to moderately mild or mild dementia of nonvascular origin. Some studies do suggest that cognitive side effects are likely in later stages of dementia and in patients with vascular dementia. It is therefore of crucial relevance to prospectively study effects of ECT in different types and phases of dementia in controlled trials. From a clinical perspective, it is essential to inform and educate patients and family about the possible risks and benefits of ECT treatment for depression in dementia.

Commentary on: Subjective cognitive decline is longitudinally associated with lower health-related quality of life.

PubMed

Cooper, Claudia

2017-12-01

Public campaigns to encourage early detection of dementia in the developed world have led to identification of more people with mild cognitive impairment (MCI) or subjective cognitive decline (SCD). Early dementia diagnosis enables earlier information and support, including symptomatic treatments where appropriate. In clinical trials, detection of those with "prodromal dementia," identified from cognitive symptoms and stratified by biomarkers (Schneider, 2010), enables potential disease modifying treatments to be targeted early in the disease process, where success is more likely.

Functioning and disability analysis by using WHO Disability Assessment Schedule 2.0 in older adults Taiwanese patients with dementia.

PubMed

Huang, Shih-Wei; Chang, Kwang-Hwa; Escorpizo, Reuben; Chi, Wen-Chou; Yen, Chia-Feng; Liao, Hua-Fang; Chang, Feng-Hang; Chiu, Wen-Ta; Lin, Jia-Wei; Liou, Tsan-Hon

2016-08-01

To analyse the disability status of elderly Taiwanese dementia patients by using the World Health Organisation Disability Assessment Schedule 2.0 (WHODAS 2.0). We enrolled 12 126 disabled elderly (>65 years) patients with dementia during July 2012-January 2014 from the Taiwan Data Bank of Persons with Disability. Trained interviewers evaluated the standardised scores in the six WHODAS 2.0 domains. Student's t test was used for comparing WHODAS 2.0 scores of male and female dementia patients with different age groups. The study population comprised 12 126 patients; 7612 were women and 4514 were men. The WHODAS 2.0 scores showed that the dementia patients had global activity limitation and participation restriction in all domains. Dementia-induced disability was prominent in male patients in all of the domains of the WHODAS 2.0. The domains of life activities, getting along with people and cognition were more strongly affected than the other domains. However, women experienced more rapid functional decline than men did as they aged. The data analysed in this large-scale, population-based study revealed crucial information on dementia-induced disability in elderly patients on the basis of the WHODAS 2.0 framework. Implications for rehabilitation Dementia patients have global functional disability in all domains of WHODAS 2.0 and multidisciplinary team is needed for rehabilitation programme intervention for these patients. When considering the rehabilitation resource and strategy, the domains of cognition, activities of daily living and life activities should be focussed. When dementia patients aged 65-75 years old, male patients got more restriction of function than female and more medical resource allocation for disabled male patients is recommended. With ageing, female dementia patients exhibited more rapid functional decline than male patients did and more budget about rehabilitation for maintain functional and dementia progression is crucial for female patients.

The Male Face of Caregiving: A Scoping Review of Men Caring for a Person With Dementia.

PubMed

Robinson, Carole A; Bottorff, Joan L; Pesut, Barbara; Oliffe, John L; Tomlinson, Jamie

2014-09-01

The purpose of this scoping review was to examine the empirical evidence published since 2007 on men as family caregivers of persons with dementia. Searches were conducted on Academic Search Complete, Ageline, CINAHL, Embase, Medline, PsychINFO, Social Work Abstracts, and Web of Science using database-specific controlled (i.e., MeSH terms) vocabulary related to dementia, men, and caregiving. Studies published in English between 2007 and 2012 that provided evidence of the experiences of male family caregivers of persons with dementia were included in the review. A total of 30 articles were selected for inclusion. Studies were grouped into three major themes for review: men's experiences of caregiving, relational factors, and outcomes of caregiving. The reviewed studies build on and support previous findings related to stress, burden, accessing services, and the importance of relational factors to men's caregiving experiences. However, there is a need for a framework that explains these findings in relation to masculinities. Such a framework would provide the necessary unifying context for a more powerful explanatory account. Furthermore, there appears to be the potential for great benefit in fully linking men's caregiver research to men's health issues as a means to articulate strategies to sustain the health and well-being of men caregivers. This seems especially relevant in light of the closing gender gap in life expectancy, which will ultimately see many men providing direct care to their partners. © The Author(s) 2014.

The art of successful implementation of psychosocial interventions in residential dementia care: a systematic review of the literature based on the RE-AIM framework.

PubMed

Boersma, Petra; van Weert, Julia C M; Lakerveld, Jeroen; Dröes, Rose-Marie

2015-01-01

In the past decades many psychosocial interventions for elderly people with dementia have been developed and implemented. Relatively little research has been done on the extent to which these interventions were implemented in the daily care. The aim of this study was to obtain insight into strategies for successful implementation of psychosocial interventions in the daily residential dementia care. Using a modified RE-AIM framework, the indicators that are considered important for effective and sustainable implementation were defined. A systematic literature search was undertaken in PubMed, PsycINFO, and Cinahl, followed by a hand search for key papers. The included publications were mapped based on the dimensions of the RE-AIM framework: Reach, Effectiveness, Adoption, Implementation, and Maintenance. Fifty-four papers met the inclusion criteria and described various psychosocial interventions. A distinction was made between studies that used one and studies that used multiple implementation strategies. This review shows that to improve their knowledge, caregivers needed at least multiple implementation strategies, only education is not enough. For increasing a more person-centered attitude, different types of knowledge transfer can be effective. Little consideration is given to the adoption of the method by caregivers and to the long-term sustainability (maintenance). This review shows that in order to successfully implement a psychosocial method the use of multiple implementation strategies is recommended. To ensure sustainability of a psychosocial care method in daily nursing home care, innovators as well as researchers should specifically pay attention to the dimensions Adoption, Implementation, and Maintenance of the RE-AIM implementation framework.

Providing Optimal Palliative Care for Persons Living with Dementia: A Comparison of Physician Perceptions in the Netherlands and the United Kingdom.

PubMed

Brazil, Kevin; Galway, Karen; Carter, Gillian; van der Steen, Jenny T

2017-05-01

The European Association for Palliative Care (EAPC) recently issued a framework that defines optimal palliative care in dementia. However, implementation of the guidelines may pose challenges for physicians working with dementia patients in practice. To measure and compare the perceptions of physicians in two European regions regarding the importance and challenges of implementing recommendations for optimal palliative care in dementia patients. Cross-sectional observational study. The Netherlands and the United Kingdom. Physicians (n = 317) providing palliative care to patients with dementia. Postal survey. Physicians in the Netherlands and Northern Ireland (NI), United Kingdom, prioritized the same domains of optimal palliative care for dementia and these match the priorities in the EAPC-endorsed guidelines. Respondents in both countries rated lack of education of professional teams and lack of awareness of the general public among the most important barriers to providing palliative care in dementia. NI respondents also identified access to specialist support as a barrier. The results indicate that there is a strong consensus among experts, elderly care physicians, and general practitioners across a variety of settings in Europe that person-centered care involving optimal communication and shared decision making is the top priority for delivering optimal palliative care in dementia. The current findings both support and enhance the new recommendations ratified by the EAPC. To take forward the implementation of EAPC guidelines for palliative care for dementia, it will be necessary to assess the challenges more thoroughly at a country-specific level and to design and test interventions that may include systemic changes to help physicians overcome such challenges.

Quality-of-life measures for use within care homes: a systematic review of their measurement properties.

PubMed

Aspden, Trefor; Bradshaw, Siobhan A; Playford, E Diane; Riazi, Afsane

2014-09-01

the aims of this review were (i) to identify quality-of-life (QoL) measures which have had their measurement properties validated in people residing in care homes or nursing homes, and to critically compare and summarise these instruments and (ii) to make recommendations for measurement instruments. bibliographic databases PsycINFO, PubMed, Cochrane, CINAHL and Embase were searched for articles evaluating measurement properties of QoL instruments in people residing in care homes. Methodological quality of studies was assessed using the consensus-based standards for the selection of health measurement instruments checklist. Measurement properties of instruments were appraised using a systematic checklist. the search strategy resulted in 3252 unique citations, of which 15 articles were included in this review. These articles assessed 13 instruments, 8 of which were dementia or Alzheimer specific instruments. The QUALIDEM, a dementia-specific observational instrument, had the widest array of information available on its measurement properties, which were mostly satisfactory. Most measurement instruments lacked information on hypotheses testing and content validity. Information on responsiveness and measurement error was not available for any instrument. for people with dementia living in care homes, the QUALIDEM is recommended for measuring QoL. For residents without dementia, we recommend Kane et al.'s Psychosocial Quality of Life Domains questionnaire. Studies of higher methodological quality, assessing a wider range of measurement properties are needed to allow a more fully informed choice of QoL instrument. © The Author 2014. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Sensory stimulation for persons with dementia: a review of the literature.

PubMed

Strøm, Benedicte S; Ytrehus, Siri; Grov, Ellen-Karine

2016-07-01

To provide an overview of available sensory stimulation interventions, and their effect on persons with dementia and to present theoretical and methodological characteristics of the studies included. Different sensory stimulation interventions are used for persons with dementia to increase alertness, reduce agitation and improve quality of life. However, the effect of these interventions is not clear, neither are their characteristics. A systematic search and review of the literature with description of the content and an evaluation of theoretical and methodological approaches. Systematic searches in CINAHL, PubMed (Medline), The Cochrane library and PsycINFO. Studies included have been subject to quality assessment by means of Critical Appraisal Skills Programme. Fifty-five studies were included and thirty of these documented significant effect. The effect of the sensory stimulation interventions mainly reported on negative behaviours, except from five studies assessing quality of life and well-being. The majority of the studies had methodological limitations. The different sensory stimulation interventions were organised into eight categories: music, light therapy, acupressure/reflexology, massage/aromatherapy and doll therapy/pet therapy/toy therapy, the Sonas programme and Snoezelen. More studies are needed to clarify appropriate substantial background for the specific interventions. However, most of the studies based their interventions on a theoretical foundation. Furthermore, more research is needed to measure the effect of sensory stimulation on communication as well as quality of life. In addition, studies are to focus on whether the effect depends on the stage of dementia. Nurses are to be aware of sensory stimulation as a possible intervention to improve persons' quality of life. © 2016 John Wiley & Sons Ltd.

Embedding the perceptions of people with dementia into quantitative research design.

PubMed

O'Rourke, Hannah M; Duggleby, Wendy; Fraser, Kimberly D

2015-05-01

Patient perspectives about quality of life are often found in the results of qualitative research and could be applied to steer the direction of future research. The purpose of this paper was to describe how findings from a body of qualitative research on patient perspectives about quality of life were linked to a clinical administrative dataset and then used to design a subsequent quantitative study. Themes from two systematic reviews of qualitative evidence (i.e., metasyntheses) identified what affects quality of life according to people with dementia. Selected themes and their sub-concepts were then mapped to an administrative dataset (the Resident Assessment Instrument 2.0) to determine the study focus, formulate nine hypotheses, and select a patient-reported outcome. A literature review followed to confirm existence of a knowledge gap, identify adjustment variables, and support design decisions. A quantitative study to test the association between conflict and sadness for people with dementia in long-term care was derived from metasynthesis themes. Challenges included (1) mapping broad themes to the administrative dataset; (2) decisions associated with inclusion of variables not identified by people with dementia from the qualitative research; and (3) selecting a patient-reported outcome, when the dataset lacked a valid subjective quality-of-life measure. Themes derived from a body of qualitative research capturing a target populations' perspective can be linked to administrative data and used to design a quantitative study. Using this approach, the quantitative findings will be meaningful with respect to the quality of life of the target population.

General practitioners' perceptions of the stigma of dementia and the role of reciprocity.

PubMed

Gove, Dianne; Small, Neil; Downs, Murna; Vernooij-Dassen, Myrra

2017-10-01

A qualitative exploration of the stigma of dementia reported that general practitioners described lack of reciprocity as one way in which people with dementia are perceived within society. This was closely linked to their perception of dementia as a stigma. In this article, we explore whether general practitioners perceive people with dementia as lacking reciprocity and, if so, if this is linked with societal opinions about dementia as a stigma. The implications of both perceptions of people with dementia failing to reciprocate and of stigma for timely diagnosis are explored. Our approach is to follow the thread of reciprocity in the data from our initial study. In this follow-up study, general practitioners' perceptions of societal views of people with dementia included a perception of a lack of reciprocity specifically linked with; failing to respond to human contact, the absence of an appropriate return on social investment and failing to contribute to, or being a burden on, society. General practitioners reported a link between societal perceptions of lack of reciprocity and stereotypes about advanced dementia, difficulties communicating with people with dementia, and lack of opportunities for people with dementia to reciprocate. General practitioners occupy a key position, they can challenge stereotypes and, with support and targeted training about communicating with people living with dementia, can emphasize the ways in which people with dementia can communicate, thereby enhancing their potential to reciprocate. Such changes have implications for improved care and quality of life through the continued maintenance of social inclusion and perceptions of personhood.

Cholinesterase inhibitors for rarer dementias associated with neurological conditions.

PubMed

Li, Ying; Hai, Shan; Zhou, Yan; Dong, Bi Rong

2015-03-03

Rarer dementias include Huntington's disease (HD), cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL), frontotemporal dementia (FTD), dementia in multiple sclerosis (MS) and progressive supranuclear palsy (PSP). Cholinesterase inhibitors, including donepezil, galantamine and rivastigmine, are considered to be the first-line medicines for Alzheimer's disease and some other dementias, such as dementia in Parkinson's disease. Cholinesterase inhibitors are hypothesised to work by inhibiting the enzyme acetylcholinesterase (AChE) which breaks down the neurotransmitter acetylcholine. Cholinesterase inhibitors may also lead to clinical improvement for rarer dementias associated with neurological conditions. To assess the efficacy and safety of cholinesterase inhibitors for cognitive impairment or dementia associated with neurological conditions. We searched the Cochrane Dementia and Cognitive Improvement Group's Specialised Register, CENTRAL, MEDLINE, EMBASE, PsycINFO, CINAHL, LILACS, several trial registries and grey literature sources in August 2013. We included randomised, double-blind, controlled trials assessing the efficacy of treatment of rarer dementias associated with neurological conditions with currently marketed cholinesterase inhibitors. Two review authors independently assessed eligibility and quality of trials, and extracted data. We used the standard methodological procedures of the Cochrane Collaboration. We included eight RCTs involving 567 participants. Six studies used a simple parallel-group design; the other two consisted of an open-label treatment period followed by a randomised phase. All trials were well concealed for allocation and double-blind, however the sample sizes of most trials were small. All trials used placebo as control. We performed meta-analyses for some outcomes in patients with MS. For all other conditions, results are presented narratively.Two trials included patients with HD; one found that cholinesterase inhibitor use in the short-term had no statistically significant impact on the cognitive portion of the Alzheimer Disease Assessment Scale (ADAS-Cog; 1 study, WMD 1.00, 95% CI -1.66 to 3.66, P = 0.46; low quality evidence), Unified Huntington's Disease Rating Scale (UHDRS) Verbal Fluency Test (1 study, WMD -1.20, 95% CI -7.97 to 5.57, P = 0.73; low quality evidence), UHDRS Symbol Digit Modalities Test (SDMT; 1 study, WMD 2.70, 95% CI -0.95 to 6.35, P = 0.15; low quality evidence) and other psychometric tests. The other study found that cholinesterase inhibitor use in the medium-term improved the results of the verbal fluency test (1 study, WMD 6.43, 95% CI 0.66 to 12.20, P = 0.03; moderate quality evidence) and California Verbal Learning Test - Second Edition (CVLT-II) Recognition Task (1 study, WMD 2.42, 95% CI 0.17 to 4.67, P = 0.04; moderate quality evidence). There was no statistically significant difference between groups on the SDMT (1 study, WMD -0.31, 95% CI -7.77 to 7.15, P = 0.94; moderate quality evidence), CVLT-II trials 1-5 (1 study, WMD -2.09, 95% CI -11.65 to 7.47, P = 0.67; moderate quality evidence), short-delay recall (1 study, WMD 0.35, 95% CI -2.87 to 3.57, P = 0.83; moderate quality evidence), or long-delay recall (1 study, WMD -0.14, 95% CI -3.08 to 2.80, P = 0.93; moderate quality evidence), and other psychometric tests.Four trials included patients with MS; one found no differences between the cholinesterase inhibitors (short-term) and placebo groups on the Wechsler Memory Scales general memory score (1 study, WMD 0.90, 95% CI -0.52 to 2.32, P = 0.22; low quality evidence). The three other trials found that, in the medium-term - cholinesterase inhibitors improved the clinician's impression of cognitive change (2 studies, OR 1.96, 95% CI 1.06 to 3.62, P = 0.03; high quality evidence). However, the treatment effect on other aspects of cognitive change were unclear, measured by the Selective Reminding Test (3 studies, WMD 1.47, 95% CI -0.39 to 3.32, P = 0.12; high quality evidence), patient's self-reported impression of memory change (2 studies, OR 1.67, 95% CI 0.93 to 3.00, P = 0.08; high quality evidence) and cognitive change (1 study, OR 0.95, 95% CI 0.45 to 1.98, P = 0.89; high quality evidence), clinician's impression of memory change (1 study, OR 1.50, 95% CI 0.59 to 3.84, P = 0.39; moderate quality evidence), other psychometric tests, and activities of daily living - patient reported impact of multiple sclerosis activities (1 study, WMD -1.18, 95% CI -3.02 to 0.66, P = 0.21; low quality evidence).One study on patients with CADASIL found a beneficial effect of cholinesterase inhibitors on the Executive interview, and Trail Making Test parts A and B. The impact of cholinesterase inhibitors on the Vascular ADAS-Cog score (1 study, WMD 0.04, 95% CI -1.57 to 1.65, P = 0.96; high quality evidence), the Clinical Dementia Rating Scale Sum of Boxes (1 study, WMD -0.09, 95% CI -0.48 to 0.03, P = 0.65; high quality evidence) Disability Assessment for Dementia scale (1 study, WMD 0.58, 95% CI -2.72 to 3.88, P = 0.73; moderate quality evidence), and other measures was unclearOne study included patients with FTD. This trial consisted of an open-label treatment period followed by a randomised, double-blind, placebo-controlled phase. No data of primary outcomes were reported in this study.In the included studies, the most common side effect was gastrointestinal symptoms. For all conditions, compared to the treatment group, the placebo group experienced significantly less nausea (6 studies, 44/257 vs. 22/246, OR 2.10, 95% CI 1.22 to 3.62, P = 0.007; high quality evidence), diarrhoea (6 studies, 40/257 vs. 13/246, OR 3.26, 95% CI 1.72 to 6.19, P = 0.0003; moderate quality evidence) and vomiting (3 studies, 17/192 vs. 3/182, OR 5.76, 95% CI 1.67 to 19.87, P = 0.006; moderate quality evidence). The sample sizes of most included trials were small, and some of the results were extracted from only one study. There were no poolable data for HD, CADASIL and FTD patients and there were no results for patients with PSP. Current evidence shows that the efficacy on cognitive function and activities of daily living of cholinesterase inhibitors in people with HD, CADASIL, MS, PSP or FTD is unclear, although cholinesterase inhibitors are associated with more gastrointestinal side effects compared with placebo.

Application of behavior-based ergonomics therapies to improve quality of life and reduce medication usage for Alzheimer's/dementia residents.

PubMed

Mowrey, Corinne; Parikh, Pratik J; Bharwani, Govind; Bharwani, Meena

2013-02-01

Behavior-based ergonomics therapy (BBET) has been proposed in the past as a viable individualized non-pharmacological intervention to manage challenging behaviors and promote engagement among long-term care residents diagnosed with Alzheimer's/dementia. We evaluate the effect of BBET on quality of life and behavioral medication usage in an 18-bed dementia care unit at a not-for-profit continuing care retirement community in West Central Ohio. Comparing a target cohort during the 6-month pre-implementation period with the 6-month post-implementation period, our study indicates that BBET appears to have a positive impact on the resident's quality of life and also appears to correlate with behavioral medical reduction. For instance, the number of days with behavioral episodes decreased by 53%, the total Minimum Data Set (MDS) mood counts decreased by 70%, and the total MDS behavior counts decreased by 65%. From a medication usage standpoint, the number of pro re nata (PRN) Ativan doses decreased by 57%.

Dementia Care Management in an Underserved Community: The Comparative Effectiveness of Two Different Approaches.

PubMed

Chodosh, Joshua; Colaiaco, Benjamin A; Connor, Karen Ilene; Cope, Dennis Wesley; Liu, Hangsheng; Ganz, David Avram; Richman, Mark Jason; Cherry, Debra Lynn; Blank, Joseph Moshe; Carbone, Raquel Del Pilar; Wolf, Sheldon Mark; Vickrey, Barbara Grace

2015-08-01

To compare the effectiveness and costs of telephone-only approach to in-person plus telephone for delivering an evidence-based, coordinated care management program for dementia. We randomized 151 patient-caregiver dyads from an underserved predominantly Latino community to two arms that shared a care management protocol but implemented in different formats: in-person visits at home and/or in the community plus telephone and mail, versus telephone and mail only. We compared between-arm caregiver burden and care-recipient problem behaviors (primary outcomes) and patient-caregiver dyad retention, care quality, health care utilization, and costs (secondary outcomes) at 6- and 12-months follow-up. Care quality improved substantially over time in both arms. Caregiver burden, care-recipient problem behaviors, retention, and health care utilization did not differ across arms but the in-person program cost more to deliver. Dementia care quality improved regardless of how care management was delivered; large differences in effectiveness or cost offsets were not detected. © The Author(s) 2015.

Cohort differences in dementia recognition and treatment indicators among assisted living residents in Maryland: did a change in the resident assessment tool make a difference?

PubMed

Samus, Quincy M; Vavilikolanu, Amrita; Mayer, Lawrence; McNabney, Matthew; Brandt, Jason; Lyketsos, Constantine G; Rosenblatt, Adam

2013-12-01

There is a lack of empirical evidence about the impact of regulations on dementia care quality in assisted living (AL). We examined cohort differences in dementia recognition and treatment indicators between two cohorts of AL residents with dementia, evaluated prior to and following a dementia-related policy modification to more adequately assess memory and behavioral problems. Cross-sectional comparison of two AL resident cohorts was done (Cohort 1 [evaluated 2001-2003] and Cohort 2 [evaluated 2004-2006]) from the Maryland Assisted Living studies. Initial in-person evaluations of residents with dementia (n = 248) were performed from a random sample of 28 AL facilities in Maryland (physician examination, clinical characteristics, and staff and family recognition of dementia included). Adequacy of dementia workup and treatment was rated by an expert consensus panel. Staff recognition of dementia was better in Cohort 1 than in Cohort 2 (77% vs. 63%, p = 0.011), with no significant differences in family recognition (86% vs. 85%, p = 0.680), or complete treatment ratings (52% vs. 64%, p = 0.060). In adjusted logistic regression, cognitive impairment and neuropsychiatric symptoms correlated with staff recognition; and cognitive impairment correlated with family recognition. Increased age and cognitive impairment reduced odds of having a complete dementia workup. Odds of having complete dementia treatment was reduced by age and having more depressive symptoms. Cohort was not predictive of dementia recognition or treatment indicators in adjusted models. We noted few cohort differences in dementia care indicators after accounting for covariates, and concluded that rates of dementia recognition and treatment did not appear to change much organically following the policy modifications.

Participatory arts programs in residential dementia care: Playing with language differences.

PubMed

Swinnen, Aagje; de Medeiros, Kate

2017-01-01

This article examines connections between language, identity, and cultural difference in the context of participatory arts in residential dementia care. Specifically, it looks at how language differences become instruments for the language play that characterizes the participatory arts programs, TimeSlips and the Alzheimer's Poetry Project. These are two approaches that are predominantly spoken-word driven. Although people living with dementia experience cognitive decline that affects language, they are linguistic agents capable of participating in ongoing negotiation processes of connection, belonging, and in- and exclusion through language use. The analysis of two ethnographic vignettes, based on extensive fieldwork in the closed wards of two Dutch nursing homes, illustrates how TimeSlips and the Alzheimer's Poetry Project support them in this agency. The theoretical framework of the analysis consists of literature on the linguistic agency of people living with dementia, the notions of the homo ludens (or man the player) and ludic language, as well as linguistic strategies of belonging in relation to place.

The Relationship of Bilingualism Compared to Monolingualism to the Risk of Cognitive Decline or Dementia: A Systematic Review and Meta-Analysis.

PubMed

Mukadam, Naaheed; Sommerlad, Andrew; Livingston, Gill

2017-01-01

Bilingualism may contribute to cognitive reserve, protect against cognitive decline, and delay the onset of dementia. We systematically reviewed evidence about the effect of bilingualism on subsequent cognitive decline or dementia. We searched electronic databases and references for longitudinal studies comparing cognitive decline in people who were bilingual with those who were monolingual and evaluated study quality. We conducted meta-analyses using random effects models to calculate pooled odds ratio of incident dementia. We included 13/1,156 eligible articles. Meta-analysis of prospective studies of the effects of bilingualism on future dementia gave a combined Odds Ratio of dementia of 0.96 (95% CI 0.74-1.23) in bilingual participants (n = 5,527) compared to monolinguals. Most retrospective studies found that bilingual people were reported to develop symptoms of cognitive decline at a later age than monolingual participants. We did not find that bilingualism protects from cognitive decline or dementia from prospective studies. Retrospective studies are more prone to confounding by education, or cultural differences in presentation to dementia services and are therefore not suited to establishing causative links between risk factors and outcomes.

Antioxidant Defence, Oxidative Stress and Oxidative Damage in Saliva, Plasma and Erythrocytes of Dementia Patients. Can Salivary AGE be a Marker of Dementia?

PubMed Central

Choromańska, Magdalena; Klimiuk, Anna; Kostecka-Sochoń, Paula; Wilczyńska, Karolina; Kwiatkowski, Mikołaj; Okuniewska, Natalia; Waszkiewicz, Napoleon; Zalewska, Anna

2017-01-01

Oxidative stress plays a crucial role in dementia pathogenesis; however, its impact on salivary secretion and salivary qualities is still unknown. This study included 80 patients with moderate dementia and 80 healthy age- and sex-matched individuals. Salivary flow, antioxidants (salivary peroxidase, catalase, superoxide dismutase, uric acid and total antioxidant capacity), and oxidative damage products (advanced oxidation protein products, advanced glycation end products (AGE), 8-isoprostanes, 8-hydroxy-2’-deoxyguanosine and total oxidant status) were estimated in non-stimulated and stimulated saliva, as well as in plasma and erythrocytes. We show that in dementia patients the concentration/activity of major salivary antioxidants changes, and the level of oxidative damage to DNA, proteins and lipids is increased compared to healthy controls. Non-stimulated and stimulated salivary secretions were significantly reduced in dementia patients. The deterioration in mini mental state examination (MMSE) score correlated with salivary AGE levels, which when considered with receiver operating characteristic (ROC) analysis, suggests their potential role in the non-invasive diagnosis of dementia. In conclusion, dementia is associated with disturbed salivary redox homeostasis and impaired secretory function of the salivary glands. Salivary AGE may be useful in the diagnosis of dementia. PMID:29053628

Models of home care services for persons with dementia: a narrative review.

PubMed

Low, Lee-Fay; Fletcher, Jennifer

2015-10-01

Worldwide trends of increasing dementia prevalence, have put economic and workforce pressures to shifting care for persons with dementia from residential care to home care. We reviewed the effects of the four dominant models of home care delivery on outcomes for community-dwelling persons with dementia. These models are: case management, integrated care, consumer directed care, and restorative care. This narrative review describes benefits and possible drawbacks for persons with dementia outcomes and elements that comprise successful programs. Case management for persons with dementia may increase use of community-based services and delay nursing home admission. Integrated care is associated with greater client satisfaction, increased use of community based services, and reduced hospital days however the clinical impacts on persons with dementia and their carers are not known. Consumer directed care increases satisfaction with care and service usage, but had little effect on clinical outcomes. Restorative models of home care have been shown to improve function and quality of life however these trials have excluded persons with dementia, with the exception of a pilot study. There has been a little research into models of home care for people with dementia, and no head-to-head comparison of the different models. Research to inform evidence-based policy and service delivery for people with dementia needs to evaluate both the impact of different models on outcomes, and investigate how to best deliver these models to maximize outcomes.

A person-centered approach to study intimacy and sexuality in residential care facility (RCF) clients with dementia: Methodological considerations and a guide to study design.

PubMed

Roelofs, Tineke S M; Luijkx, Katrien G; Embregts, Petri J C M

2017-01-01

The person-centered perspective of residential care facility (RCF) residents with dementia with regard to their intimate and sexual lives is largely neglected in research. We aim to provide methodological considerations and reflections on a performed qualitative study. Recommendations and a guide to study design are provided to inform and encourage future research on the inclusion of people with dementia as participants. Methodological recommendations and reflections are described in chronological order of the procedure. Fragments of interviews are included for further illustration and clarification. Considering preparation, close involvement of clinical practice, and extensive deliberation regarding study design tended to be important. Considering procedure, investment in contacts with clinical practice and authorized representatives; an introduction meeting; person-centered inclusion and consent; profound skills in interviewing participants with dementia; and flexibility in data collection were proven of importance. Considering data analysis and study quality, including field notes and aiming at a balance between study quality and practicability to enhance study 'rigor' were found important. Including the person-centered perspective in research on intimacy and sexuality of RCF residents with dementia, is challenging and takes a flexible and creative approach. It is, however, worthwhile to close the gap in literature.

Connecting health-related quality of life and mental health in dementia caregivers from Colombia, South America.

PubMed

Perrin, Paul B; Morgan, Matthew; Aretouli, Eleni; Sutter, Megan; Snipes, Daniel J; Hoyos, Guillermo Ramirez; Buraye, Jacqueline Arabia; Arango-Lasprilla, Juan Carlos

2014-01-01

Research in Caucasian populations has begun to examine the broad associations between physical and mental health in dementia caregivers. However, the examination of this relationship in Latin America is largely absent from the literature despite the fact that the region will see a major increase in dementia cases over the next 20 years. The current study examined the associations between health-related quality of life (HRQOL) and mental health in 90 dementia caregivers from Colombia, South America. A canonical correlation found that higher caregiver HRQOL was related to better mental health, as expected. Caregivers with high vitality and low role limitations due to physical problems tended to have low depression and high satisfaction with life. Follow-up multiple regressions found that caregiver role limitations due to physical problems was uniquely associated with satisfaction with life, whereas vitality, role limitations due to physical problems, and pain were uniquely associated with burden (although the pain effect was likely error due to a suppressor effect). Additionally, vitality and social functioning were uniquely negatively related to depression. Because of the extremely high overlap between these two sets of variables, dementia interventions are needed in Latin America that target both caregiver mental and physical health, as both likely operate in unison and influence each other.

Efficacy of Ginkgo biloba extract EGb 761® in dementia with behavioural and psychological symptoms: A systematic review.

PubMed

von Gunten, Armin; Schlaefke, Sandra; Überla, Karl

2016-12-01

To review current evidence of efficacy of Ginkgo biloba extract EGb 761 ® in dementia with behavioural and psychological symptoms (BPSD). Randomized, placebo-controlled trials assessing the effects of EGb 761 ® in dementia patients with BPSD were included if the diagnosis was made in accordance with internationally accepted criteria, the treatment period was at least 22 weeks, outcome measures covered BPSD and at least two of the following domains of assessment, i.e. cognition, activities of daily living and clinical global assessment, and methodological quality was adequate. An analysis of covariance (ANCOVA) model was used to calculate the pooled effect estimates and to compare effects of EGb 761 ® and placebo; furthermore, combined risk differences of response rates were calculated. Four published trials were identified, involving altogether 1,628 outpatients with mild to moderate dementia. Least-square mean differences for change from baseline in cognition, BPSD (including caregiver distress rating), activities of daily living, clinical global impression, and quality of life favoured EGb 761 ® (P < 0.001 for all comparisons). The pooled analyses provide evidence of efficacy of EGb 761 ® at a daily dose of 240 mg in the treatment of out-patients suffering from Alzheimer's, vascular or mixed dementia with BPSD.

Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review.

PubMed

Stansfeld, Jacki; Stoner, Charlotte R; Wenborn, Jennifer; Vernooij-Dassen, Myrra; Moniz-Cook, Esme; Orrell, Martin

2017-08-01

Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice. A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties. Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory. There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.

Special Issue: Using Drama to Improve Person-Centred Dementia Care

PubMed Central

Mitchell, Gail J.; Mistry, Bhavnita; Ballon, Bruce

2013-01-01

Background Person-centred dementia care guidelines emphasize the assessment of individual needs, and, where appropriate, the use of non-pharmacological interventions before resorting to pharmacological management. Yet dementia care is not consistent with these guidelines suggesting conceptual limitations and reliance on passive knowledge translation strategies. Aims and Objectives We implemented a 12-week drama-based educational intervention to introduce to dementia practitioners person-centred care that emphasizes the notion of embodied selfhood (defined as non-verbal self-expression). Design and Methods Focus groups and semi-structured interviews with practitioners (n=24) in two nursing homes in central Canada were undertaken to assess the effectiveness of the drama-based components of the intervention. Results Our findings suggest that drama was effective as an educational modality, and helped implement the person-centred approach into practice. Significant practice outcomes included: new awareness that residents’ body movements and dispositions convey meaning; seeking biographical information from families; increased time efficiency; and supporting residents’ independence. Conclusions Our findings make an important contribution to person-centred dementia care by broadening the notion of personhood, and by facilitating implementation using drama. Implications for Practice As an enhancement of person-centered care, the support of embodied selfhood may significantly improve residents’ quality of life, quality of care, and practitioners’ caregiving experience. PMID:20925717

Ethnographic analysis of everyday ethics in the care of nursing home residents with dementia: a taxonomy.

PubMed

Powers, B A

2001-01-01

The concept of everyday ethics was used to emphasize the moral basis of ordinary issues of daily living affecting quality of life for nursing home residents with dementia. To critically examine ethical issues of daily living affecting nursing home residents with dementia and to construct a descriptive taxonomy inductively derived from ethnographic fieldwork data. Combined anthropological methods of participant observation and in-depth interviewing were used in the natural setting of a 147-bed, voluntary, not-for-profit nursing home. Experiences of 30 residents, their family members, and nursing home staff were explored. In addition, the records of 10 ethics committee cases involving residents with dementia further enlarged the database. The taxonomy of everyday ethical issues includes the following four domains: (a) learning the limits of intervention; (b) tempering the culture of surveillance and restraint; (c) preserving the integrity of the individual; and (d) defining community norms and values. Each is representative of constellations of concerns that are grounded in the cultural and moral environment of the nursing home. Results highlight the challenges of recognizing the ethical in the ordinary, and of resolving everyday issues in ways that enhance quality of life for residents with dementia and those (family and staff) who care for them.

Depression in dementia: epidemiology, mechanisms, and treatment.

PubMed

Enache, Daniela; Winblad, Bengt; Aarsland, Dag

2011-11-01

Depression in people with dementia has important implications, such as reduced quality of life of patients and carers, and is associated with increased costs and reduced cognition. Here, we review recent studies of the epidemiology, course, mechanisms and treatment of depression in people with dementia. Depression is both a risk factor and a prodrome of Alzheimer's disease. Depression is a common occurrence in all types of dementias and at all disease stages, including in mild cognitive impairment (MCI). Many studies have explored whether depression in MCI increased the conversion rate to dementia, but findings are inconsistent. Studies of the mechanisms are relatively few and findings inconsistent, but inflammatory, trophic and cerebrovascular factors may contribute, in addition to monoamine deficiency and severity of plaques and tangle pathology. Studies of antidepressants for depression in dementia are inconclusive, with several negative findings reported in recent large studies, suggesting that antidepressant may not confer benefit over placebo. Depression is a common risk factor, prodrome, and accompanying symptom of people with Alzheimer's dementia. The mechanisms are unknown, and there is little evidence of effective therapies.

Forget me not: dementia in prison.

PubMed

Maschi, Tina; Kwak, Jung; Ko, Eunjeong; Morrissey, Mary B

2012-08-01

The number of older adults with dementia in U.S. prisons is rapidly rising. Yet, the vast majority of this marginalized subgroup of the aging population is left neglected behind bars without access to adequate medical and mental health care services. We assert that proactive, interdisciplinary collaborative efforts to improve practice, policy, and research and to develop a high-quality evidence-based continuum of care for this aging population are urgently needed. The overarching goals of this paper are to raise awareness of the life and experiences of persons with dementia in prison and to stimulate discussion, research, and advocacy efforts for this forgotten subgroup of older Americans. We describe the growing number of older adults with dementia in U.S. prisons, high-risk factors for dementia present in the prison population, and the life and experience of persons with dementia in the culture and environment of prison that is primarily not designed for them. We review the current state of services and programs for dementia in prison. We conclude by proposing practice, policy, and research-related priority areas and strategies for interdisciplinary gerontological responses.

Development of DEMQOL-U and DEMQOL-PROXY-U: generation of preference-based indices from DEMQOL and DEMQOL-PROXY for use in economic evaluation.

PubMed

Mulhern, B; Rowen, D; Brazier, J; Smith, S; Romeo, R; Tait, R; Watchurst, C; Chua, K-C; Loftus, V; Young, T; Lamping, D; Knapp, M; Howard, R; Banerjee, S

2013-02-01

Dementia is one of the most common and serious disorders in later life and the economic and personal cost of caring for people with dementia is immense. There is a need to be able to evaluate interventions in dementia using cost-effectiveness analyses, but the generic preference-based measures typically used to measure effectiveness do not work well in dementia. Existing dementia-specific measures can effectively measure health-related quality of life but in their current form cannot be used directly to inform cost-effectiveness analysis using quality-adjusted life-years as the measure of effectiveness. The aim was to develop two brief health-state classifications, one from DEMQOL and one from DEMQOL-Proxy, to generate health states amenable to valuation. These classification systems consisted of items taken from DEMQOL and DEMQOL-Proxy so they can be derived from any study that has used these instruments. In the first stage of the study we used a large, clinically representative sample aggregated from two sources: a sample of patients and carers attending a memory service in south London and a sample of patients and carers from other community services in south London. This included 644 people with a diagnosis of mild/moderate dementia and 689 carers of those with mild/moderate dementia. For the valuation study, the general population sample of 600 respondents was drawn to be representative of the UK general population. Households were sampled in urban and rural areas in northern England and balanced to the UK population according to geodemographic profiles. In the patient/carer valuation study we interviewed a sample of 71 people with mild dementia and 71 family carers drawn from a memory service in south London. Finally, the instruments derived were applied to data from the HTA-SADD (Study of Antidepressants for Depression in Dementia) trial. This was a complex multiphase study with four linked phases: phase 1 - derivation of the health-state classification system; phase 2 - general population valuation survey and modelling to produce values for every health state; phase 3 - patient/carer valuation survey; and phase 4 - application of measures to trial data. All four phases were successful and this report details this development process leading to the first condition-specific preference-based measures in dementia, an important new development in this field. The first limitation relates to the lack of an external data set to validate the DEMQOL-U and DEMQOL-Proxy-U classification systems. Throughout the development process we have made decisions about which methodology to use. There are other valid techniques that could be used and it is possible to criticise the choices that we have made. It is also possible that the use of a mild to moderate dementia sample has resulted in classification systems that do not fully reflect the challenges of severe dementia. The results presented are sufficiently encouraging to recommend that the DEMQOL instruments be used alongside a generic measure such as the European Quality of Life-5 Dimensions (EQ-5D) in future studies of interventions in dementia as there was evidence that they can be more sensitive for patients at the milder end of disease and some limited evidence that the person with dementia measure may be able to reflect deterioration. The National Institute for Health Research Health Technology Assessment programme.

Preventing Loss of Independence through Exercise (PLIÉ): A Pilot Clinical Trial in Older Adults with Dementia

PubMed Central

Barnes, Deborah E.; Mehling, Wolf; Wu, Eveline; Beristianos, Matthew; Yaffe, Kristine; Skultety, Karyn; Chesney, Margaret A.

2015-01-01

Background Current dementia medications have small effect sizes, many adverse effects and do not change the disease course. Therefore, it is critically important to study alternative treatment strategies. The goal of this study was to pilot-test a novel, integrative group exercise program for individuals with mild-to-moderate dementia called Preventing Loss of Independence through Exercise (PLIÉ), which focuses on training procedural memory for basic functional movements (e.g., sit-to-stand) while increasing mindful body awareness and facilitating social connection. Methods We performed a 36-week cross-over pilot clinical trial to compare PLIÉ with usual care (UC) at an adult day program for individuals with dementia in San Francisco, CA. Assessments of physical performance, cognitive function, physical function, dementia-related behaviors, quality of life and caregiver burden were performed by blinded assessors at baseline, 18 weeks (cross-over) and 36 weeks. Our primary outcomes were effect sizes based on between-group comparisons of change from baseline to 18 weeks; secondary outcomes were within-group comparisons of change before and after cross-over. Results Twelve individuals enrolled (7 PLIÉ, 5 UC) and 2 withdrew (1 PLIÉ, 18 weeks; 1 UC, 36 weeks). Participants were 82% women (mean age, 84 ± 4 years); caregivers were 82% daughters (mean age, 56 ± 13 years). Effect sizes were not statistically significant but suggested potentially clinically meaningful (≥0.25 SDs) improvement with PLIÉ versus UC for physical performance (Cohen’s D: 0.34 SDs), cognitive function (0.76 SDs) and quality of life (0.83 SDs) as well as for caregiver measures of participant’s quality of life (0.33 SDs) and caregiver burden (0.49 SDs). Results were similar when within-group comparisons were made before and after cross-over. Conclusions PLIÉ is a novel, integrative exercise program that shows promise for improving physical function, cognitive function, quality of life and caregiver burden in individuals with mild-to-moderate dementia. Larger randomized, controlled trials are warranted. Trial Registration ClinicalTrials.gov NCT01371214 PMID:25671576

Measuring quality of life of people with predementia and dementia and their caregivers: a systematic review protocol.

PubMed

Landeiro, Filipa; Walsh, Katie; Ghinai, Isaac; Mughal, Seher; Nye, Elsbeth; Wace, Helena; Roberts, Nia; Lecomte, Pascal; Wittenberg, Raphael; Wolstenholme, Jane; Handels, Ron; Roncancio-Diaz, Emilse; Potashman, Michele H; Tockhorn-Heidenreich, Antje; Gray, Alastair M

2018-03-30

Dementia is the fastest growing major cause of disability globally and may have a profound impact on the health-related quality of life (HRQoL) of both the patient with dementia and those who care for them. This review aims to systematically identify and synthesise the measurements of HRQoL for people with, and their caregivers across the full spectrum of, dementia from its preceding stage of predementia to end of life. A systematic literature review was conducted in Medical Literature Analysis and Retrieval System Online , ExcerptaMedicadataBASE, Cochrane Database of Systematic Reviews , Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effect, National Health Service Economic Evaluation Database and PsycINFO between January 1990 and the end of April 2017. Two reviewers will independently assess each study for inclusion and disagreements will be resolved by a third reviewer. Data will be extracted using a predefined data extraction form following best practice. Study quality will be assessed with the Effective Public Health Practice Project quality assessment tool. HRQoL measurements will be presented separately for people with dementia and caregivers by instrument used and, when possible, HRQoL will be reported by disease type and stage of the disease. Descriptive statistics of the results will be provided. A narrative synthesis of studies will also be provided discussing differences in HRQoL measurements by instrument used to estimate it, type of dementia and disease severity. This systematic literature review is exempt from ethics approval because the work is carried out on published documents. The findings of the review will be disseminated in a related peer-reviewed journal and presented at conferences. They will also contribute to the work developed in the Real World Outcomes across the Alzheimer's disease spectrum for better care: multimodal data access platform (ROADMAP). CRD42017071416. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Implementing Dementia Care Mapping to develop person-centred care: results of a process evaluation within the Leben-QD II trial.

PubMed

Quasdorf, Tina; Riesner, Christine; Dichter, Martin Nikolaus; Dortmann, Olga; Bartholomeyczik, Sabine; Halek, Margareta

2017-03-01

To evaluate Dementia Care Mapping implementation in nursing homes. Dementia Care Mapping, an internationally applied method for supporting and enhancing person-centred care for people with dementia, must be successfully implemented into care practice for its effective use. Various factors influence the implementation of complex interventions such as Dementia Care Mapping; few studies have examined the specific factors influencing Dementia Care Mapping implementation. A convergent parallel mixed-methods design embedded in a quasi-experimental trial was used to assess Dementia Care Mapping implementation success and influential factors. From 2011-2013, nine nursing units in nine different nursing homes implemented either Dementia Care Mapping (n = 6) or a periodic quality of life measurement using the dementia-specific instrument QUALIDEM (n = 3). Diverse data (interviews, n = 27; questionnaires, n = 112; resident records, n = 81; and process documents) were collected. Each data set was separately analysed and then merged to comprehensively portray the implementation process. Four nursing units implemented the particular intervention without deviating from the preplanned intervention. Translating Dementia Care Mapping results into practice was challenging. Necessary organisational preconditions for Dementia Care Mapping implementation included well-functioning networks, a dementia-friendly culture and flexible organisational structures. Involved individuals' positive attitudes towards Dementia Care Mapping also facilitated implementation. Precisely planning the intervention and its implementation, recruiting champions who supported Dementia Care Mapping implementation and having well-qualified, experienced project coordinators were essential to the implementation process. For successful Dementia Care Mapping implementation, it must be embedded in a systematic implementation strategy considering the specific setting. Organisational preconditions may need to be developed before Dementia Care Mapping implementation. Necessary steps may include team building, developing and realising a person-centred care-based mission statement or educating staff regarding general dementia care. The implementation strategy may include attracting and involving individuals on different hierarchical levels in Dementia Care Mapping implementation and supporting staff to translate Dementia Care Mapping results into practice. The identified facilitating factors can guide Dementia Care Mapping implementation strategy development. © 2016 John Wiley & Sons Ltd.

Living with dementia in a nursing home, as described by persons with dementia: a phenomenological hermeneutic study.

PubMed

Mjørud, Marit; Engedal, Knut; Røsvik, Janne; Kirkevold, Marit

2017-01-31

Persons with dementia have described life in nursing home as difficult and lonely. Persons with dementia often reside in nursing homes for several years; therefore, knowledge is needed about how quality of life is affected in the nursing-home setting in order to be able to provide the best possible care. The aim of this study was to investigate the personal experience of living in a nursing home over time from the perspective of the person with dementia and to learn what makes life better or worse in the nursing home. A phenomenological hermeneutic research design was applied. Unstructured, face-to-face interviews and field observations were conducted twice, three months apart. Twelve persons residing in three different nursing homes were included. The analysis revealed four themes: "Being in the nursing home is okay, but you must take things as they are"; "Everything is gone"; "Things that make it better and things that make it worse"; and "Persons - for better or worse? Staff, family, and co-residents". Persons with dementia are able to communicate their feelings and thoughts about their lives in the nursing home and can name several factors that have impacts on their quality of life. They differentiate between members of the staff, and they prefer their primary nurse. They are content with life in general, but everyday life is boring, and their sense of contentment is based on acceptance of certain facts of reality and their ability to adjust their expectations.

Audit of memory clinic practice against CCG guidelines: West Suffolk Hospital.

PubMed

Mahmoud, Afef; Vandana, Balakrishna Menon; Chipperfield, Ruth; Ferrera, Silvia; Rubinsztein, Judy

2015-09-01

The memory service based in the West Suffolk has received increased funding to deliver a high quality service against standards set by the Clinical Commissioning Group (CCG). This audit aims to examine if we are achieving the standards set by the local CCG and to identify areas to improve the quality of the service.We also aimed to assess information as to how many patients referred had dementia. If they had a dementia suitable for possible anti-dementia medication (such as dementia of Alzheimer's type, Alzheimer's mixed type or atypical or Lewy body/ Parkinson's dementia) to ascertain if they were being offered anti-dementia medication. Retrospective analysis of 60 patients from the memory service were analysed. The first 10 patients referred in alternative months were selected for inclusion. Standards were based on targets set by the CCG in terms of time needed to assess, diagnose, communicate diagnosis to the GP and give post diagnostic advice. Patients in this memory service were being seen 37 days (on average) after referral. Most patients received a diagnosis at their initial assessment but some needed further investigation to establish the diagnosis or the specific type of diagnosis. The time for letters to be typed did not meet standards and letters were sent out on average 23 days after patients were being seen. Post diagnostic advice was delivered to most who received a diagnosis. Our service is offering timely diagnosis to those referred to the memory service in line with national guidelines.

The impact of individualized interaction on the quality of life of elderly dependent on care as a result of dementia: a study with a pre-post design.

PubMed

de Vocht, Hilde M; Hoogeboom, A M G Marcella; van Niekerk, Bob; den Ouden, Marjolein E M

2015-01-01

The aim was to assess the impact of a one-to-one 30-min individualized interaction per day on the behavior and quality of life of care-dependent residents with dementia. In a pre-/post-test study, 15 care-dependent residents with dementia (mean age 88.8 years, 86.7% women) were included. Resident behavior was measured using video observation and quality of life using Qualidem. Health care professionals (n = 13) and direct relatives (n = 4) were interviewed about the effect of the intervention. The effect of the intervention was analyzed using the Friedman analysis of variance. The video observation showed that maintaining eye contact, touching, responding to speaking, tracking observable stimuli and asking questions about the activity significantly increased during the intervention. These findings were supported by interviews with nurses who described experiences of making human-to-human contact with the residents. No significant overall changes were found in quality of life. These findings were partially supported by interviews with health care professionals and relatives as some perceived effects beyond the 30-min intervention. Interaction offered on a one-to-one basis tailored to individual preferences significantly improved positive interactive behavior of care-dependent residents with dementia during the intervention. Surveys revealed no significant overall effect of the intervention. The interviews indicated there might be effects beyond the intervention for some residents.

Measuring the quality of life of people with dementia in nursing homes in Germany - the study protocol for the Qol-Dem Project.

PubMed

Dichter, Martin Nikolaus; Halek, Margareta; Dortmann, Olga; Meyer, Gabriele; Bartholomeyczik, Sabine

2013-01-01

QUALIDEM is a standardized dementia-specific quality of life (Qol) measurement, which was developed and validated in the Netherlands. A German version has been available since 2008. This study protocol describes the design and methodology for the quality of life of people with dementia (Qol-Dem) project. This project aims to evaluate the reliability and validity of the German version of the QUALIDEM. Due to the lack of both a universal definition of Qol and of standards to verify the validity of Qol measurements, this study is divided into three phases. The aim of the first theoretical phase is the development of a dementia-specific Qol model as a result of a meta-synthesis of qualitative studies. The second empirical phase consists of the three following steps: (a) an investigation of the scalability and internal consistency of the measure, (b) an evaluation of the interrater and intrarater reliability, and (c) an extensive evaluation of the validity of the QUALIDEM. The resulting Qol model (phase 1) will be used for the selection of appropriate comparators for validity testing. In the third phase, the QUALIDEM will be adapted, if necessary, based on the knowledge generated in the first two phases. The findings of the Qol-Dem project should deliver an accurate assessment of the psychometric properties of the German version of the QUALIDEM. The results will contribute to the further development of the instrument. Furthermore, the results will contribute to the theoretical development of the concept of Qol among people with dementia.

Effectiveness of a community-based multidomain cognitive intervention program in patients with Alzheimer's disease.

PubMed

Kim, Hee-Jin; Yang, YoungSoon; Oh, Jeong-Gun; Oh, Seongil; Choi, Hojin; Kim, Kyoung Hee; Kim, Seung Hyun

2016-02-01

The aim of the present study was to evaluate the efficacy of a multidomain program in patients with Alzheimer's disease (AD). A total of 53 patients with probable AD participated in the present study. The participants were classified to a cognitive programming group (n = 32) and control group (n = 21). Participants in the cognitive intervention program received multidomain cognitive stimulation including art, music, recollection and horticultural therapy, each period of intervention lasting 1 h. This program was repeated five times per week over a period of 6 months at the Seongdong-gu Center for Dementia. The Mini-Mental State Examination, the Korean version of Consortium to Establish a Registry for Alzheimer's Disease, Clinical dementia rating scales, and the Korean version of the Quality of Life-Alzheimer's Disease were used to evaluate cognitive ability at baseline and after intervention. After 6 months, cognitive abilities were compared between patients actively participating in cognitive intervention and the pharmacotherapy only group. Patients receiving cognitive intervention showed significant cognitive improvement in the word-list recognition and recall test scores versus the control. There was no change in the overall Clinical dementia rating score, but the domain of community affairs showed a significant improvement in the cognitive intervention group. Quality of Life-Alzheimer's Disease of caregivers was slightly improved in the cognitive intervention group after 6 months. Multidomain cognitive intervention by regional dementia centers has great potential in helping to maintain cognitive function in patients with dementia, increase their social activity and reduce depression, while enhancing the quality of life of caregivers. © 2015 Japan Geriatrics Society.

The effects of quality of life on behavioral and psychological symptoms in elderly people with dementia residing at long-term care facilities.

PubMed

Suzuki, Mizue; Hattori, Hideyuki; Fukuda, Koji; Ooshiro, Hajime; Saruhara, Takayuki; Furuta, Yoshie; Abe, Kunihiko; Kanamori, Masao

2017-01-01

The purpose of the present study was to clarify how quality of life (QOL) affects the behavioral and psychological symptoms of dementia (BPSDs) among elderly individuals with dementia within long-term care facilities (e.g., long-term healthcare facilities, sanatorium-type medical facilities, and special nursing homes for the elderly). Elderly individuals with dementia were evaluated to determine their activities of daily living (ADL; Katz), Mini-mental State Examination (MMSE), Neuropsychiatric Inventory (NPI), and Quality of life inventory for the elderly with dementia (QOLD) scores. The subjects were recruited from intermediate welfare facilities (n = 226, 43.7%), hospitals with supportive care (n=91, 17.6%), and intermediate care facilities (n = 200, 38.7%). The mean age of the subjects was 85.18±7.13 years. The NPI scores revealed that Agitation/Aggression was high among subjects who resided in healthcare health facilities and sanatorium-type medical facilities, while Apathy/Indifference was high in those who resided in special nursing homes. Additionally, a multiple regression analysis found that most of the NPI items, when set as independent variables, displayed a significant association with the same subscale of the QOLD. When each item of the NPI was set as a dependent variable in a multiple regression analysis, the scores were significantly related to both subscales of the QOLD. It is suggested that QOL should be maintained or improved in an effort to reduce the incidence of the associated BPSDs in long-term care facilities.

Comparing different types of source memory attributes in dementia of Alzheimer's type.

PubMed

Mammarella, Nicola; Fairfield, Beth; Di Domenico, Alberto

2012-04-01

Source monitoring (SM) refers to our ability to discriminate between memories from different sources. Twenty healthy high-cognitive functioning older adults, 20 healthy low-cognitive functioning older adults, and 20 older adults with dementia of Alzheimer's type (DAT) were asked to perform a series of SM tasks that varied in terms of the to-be-remembered source attribute (perceptual, spatial, temporal, semantic, social, and affective details). Results indicated that older DAT adults had greater difficulty in SM compared to the healthy control groups, especially with spatial and semantic details. Data are discussed in terms of the SM framework and suggest that poor memory for some types of source information may be considered as an important indicator of clinical memory function when assessing for the presence and severity of dementia.

Arts Participation: Counterbalancing Forces to the Social Stigma of a Dementia Diagnosis.

PubMed

Bienvenu, Beth; Hanna, Gay

2017-07-01

A diagnosis of dementia profoundly impacts a person in terms of both the functional progression of the disease and the social stigma associated with the diagnosis. A growing body of research demonstrates the effectiveness of innovative programs such as the Alzheimer's Poetry Project, Meet Me at MoMA, and TimeSlips™ in counterbalancing social stigma by building a social and emotional framework for strength-based living for people diagnosed with dementia through arts participation. These programs focus on supporting autonomy and generativity through creative expression to help sustain the social, emotional, and community fabric of people's lives in the face of significant counterbalancing forces (e.g., the disease itself, stigma, and institution-centered approaches to care). © 2017 American Medical Association. All Rights Reserved.

Diagnosis and management of dementia in family practice.

PubMed

Wilcock, Jane; Jain, Priya; Griffin, Mark; Thuné-Boyle, Ingela; Lefford, Frances; Rapp, David; Iliffe, Steve

2016-01-01

Improving quality of care for people with dementia is a high priority. Considerable resources have been invested in financial incentives, guideline development, public awareness and educational programmes to promote earlier diagnosis and better management. Evaluating family physicians' concordance with guidelines on diagnosis and management of people with dementia, from first documentation of symptoms to formal diagnosis. Analysis of medical records of 136 people with dementia recruited by 19 family practices in NW London and surrounding counties. Practices invited 763 people with dementia to participate, 167 (22%) agreed. Complete records were available for 136 (18%). The majority of records included reference to recommended blood tests, informant history and caregiver concerns. Presence or absence of symptoms of depression, psychosis, other behavioural and psychological symptoms of dementia, and cognitive function tests were documented in 30%-40% of records. Documentation of discussions about signs and symptoms of dementia, treatment options, care, support, financial, legal and advocacy advice were uncommon. Comparison of these findings from a similar study in 2000-2002 suggests improvements in concordance with blood tests, recording informant history, presence or absence of depression or psychosis symptoms. There was no difference in documenting cognitive function tests. Immediate referral to specialists was more common in the recent study. Five years after UK dementia guidelines and immediately after the launch of the dementia strategy, family physicians appeared concordant with clinical guidelines for dementia diagnosis (other than cognitive function tests), and referred most patients immediately. However, records did not suggest systematic dementia management.

The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial

PubMed Central

Leung, Phuong; Whitaker, Chris; Burns, Alistair; Knapp, Martin; Leroi, Iracema; Spector, Aimee; Roberts, Steven; de Waal, Hugo; Orgeta, Vasiliki

2017-01-01

Background Cognitive stimulation therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (well-being) for the caregiver. Methods and findings A single-blind, pragmatic randomised controlled trial (RCT) was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants’ homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs). Participants were randomly assigned to iCST (75, 30-min sessions) or treatment as usual (TAU) control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer’s Disease Assessment Scale–cognitive [ADAS-Cog]) and self-reported QoL (Quality of Life Alzheimer’s Disease [QoL-AD]) for the person with dementia and general health status (Short Form-12 health survey [SF-12]) for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale) and health-related QoL (European Quality of Life–5 Dimensions [EQ-5D]) for the caregiver. Intention to treat (ITT) analyses were conducted. At the post-test (26 wk), there were no differences between the iCST and TAU groups in the outcomes of cognition (mean difference [MD] = −0.55, 95% CI −2.00–0.90; p = 0.45) and self-reported QoL (MD = −0.02, 95% CI −1.22–0.82; p = 0.97) for people with dementia, or caregivers’ general health status (MD = 0.13, 95% CI −1.65–1.91; p = 0.89). However, people with dementia receiving iCST rated the relationship with their caregiver more positively (MD = 1.77, 95% CI 0.26–3.28; p = 0.02), and iCST improved QoL for caregivers (EQ-5D, MD = 0.06, 95% CI 0.02–0.10; p = 0.01). Forty percent (72/180) of dyads allocated to iCST completed at least two sessions per week, with 22% (39/180) completing no sessions at all. Study limitations include low adherence to the intervention. Conclusions There was no evidence that iCST has an effect on cognition or QoL for people with dementia. However, participating in iCST appeared to enhance the quality of the caregiving relationship and caregivers’ QoL. Trial registration The iCST trial is registered with the ISRCTN registry (identified ISRCTN 65945963, URL: DOI 10.1186/ISRCTN65945963). PMID:28350796

Memory and communication support in dementia: research-based strategies for caregivers.

PubMed

Smith, Erin R; Broughton, Megan; Baker, Rosemary; Pachana, Nancy A; Angwin, Anthony J; Humphreys, Michael S; Mitchell, Leander; Byrne, Gerard J; Copland, David A; Gallois, Cindy; Hegney, Desley; Chenery, Helen J

2011-03-01

Difficulties with memory and communication are prominent and distressing features of dementia which impact on the person with dementia and contribute to caregiver stress and burden. There is a need to provide caregivers with strategies to support and maximize memory and communication abilities in people with dementia. In this project, a team of clinicians, researchers and educators in neuropsychology, psychogeriatrics, nursing and speech pathology translated research-based knowledge from these fields into a program of practical strategies for everyday use by family and professional caregivers. From the available research evidence, the project team identified compensatory or facilitative strategies to assist with common areas of difficulty, and structured these under the mnemonics RECAPS (for memory) and MESSAGE (for communication). This information was adapted for presentation in a DVD-based education program in accordance with known characteristics of effective caregiver education. The resultant DVD comprises (1) information on the nature and importance of memory and communication in everyday life; (2) explanations of common patterns of difficulty and preserved ability in memory and communication across the stages of dementia; (3) acted vignettes demonstrating the strategies, based on authentic samples of speech in dementia; and (4) scenarios to prompt the viewer to consider the benefits of using the strategies. Using a knowledge-translation framework, information and strategies can be provided to family and professional caregivers to help them optimize residual memory and communication in people with dementia. Future development of the materials, incorporating consumer feedback, will focus on methods for enabling wider dissemination.

Implementing Innovative Models of Dementia Care: The Healthy Aging Brain Center

PubMed Central

Boustani, Malaz A.; Sachs, Greg A.; Alder, Catherine A.; Munger, Stephanie; Schubert, Cathy C.; Guerriero Austrom, Mary; Hake, Ann; Unverzagt, Frederick W.; Farlow, Martin; Matthews, Brandy R.; Perkins, Anthony J.; Beck, Robin A.; Callahan, Christopher M.

2010-01-01

BACKGROUND Recent randomized controlled trials have demonstrated the effectiveness of the collaborative dementia care model targeting both patients suffering from dementia and their informal caregivers. OBJECTIVE To implement a sustainable collaborative dementia care program in a public health care system in Indianapolis. METHODS We used the framework of Complex Adaptive System and the tool of the Reflective Adaptive Process to translate the results of the dementia care trial into the Healthy Aging Brain Center (HABC). RESULTS Within its first year of operation, the HABC delivered 528 visits to serve 208 patients and 176 informal caregivers. The mean age of HABC patients was 73.8 (SD 9.5), 40% were African Americans, 42% had less than high school education, 14% had normal cognitive status, 39% received a diagnosis of mild cognitive impairment, and 46% were diagnosed with dementia. Within 12 months of the initial HABC visit, 28% of patients had at least one visit to an emergency room (ER) and 14% were hospitalized with a mean length of stay of five days. The rate of a one-week ER revisit was 14% and the 30-day re-hospitalization rate was 11%. Only 5% of HABC patients received an order for neuroleptics and only 16% had simultaneous orders for both definite anticholinergic and anti-dementia drugs. CONCLUSION The tools of “implementation science” can be utilized to translate a health care delivery model developed in the research laboratory to a practical, operational, health care delivery program. PMID:21271387

Life- and person-centred help in Mecklenburg-Western Pomerania, Germany (DelpHi): study protocol for a randomised controlled trial

PubMed Central

2012-01-01

Background The provision of appropriate medical and nursing care for people with dementia is a major challenge for the healthcare system in Germany. New models of healthcare provision need to be developed, tested and implemented on the population level. Trials in which collaborative care for dementia in the primary care setting were studied have demonstrated its effectiveness. These studies have been conducted in different healthcare systems, however, so it is unclear whether these results extend to the specific context of the German healthcare system. The objective of this population-based intervention trial in the primary care setting is to test the efficacy and efficiency of implementing a subsidiary support system on a population level for persons with dementia who live at home. Methods and study design The study was designed to assemble a general physician-based epidemiological cohort of people above the age of 70 who live at home (DelpHi cohort). These people are screened for eligibility to participate in a trial of dementia care management (DelpHi trial). The trial is a cluster-randomised, controlled intervention trial with two arms (intervention and control) designed to test the efficacy and efficiency of implementing a subsidiary support system for persons with dementia who live at home. This subsidiary support system is initiated and coordinated by a dementia care manager: a nurse with dementia-specific qualifications who delivers the intervention according to a systematic, detailed protocol. The primary outcome is quality of life and healthcare for patients with dementia and their caregivers. This is a multidimensional outcome with a focus on four dimensions: (1) quality of life, (2) caregiver burden, (3) behavioural and psychological symptoms of dementia and (4) pharmacotherapy with an antidementia drug and prevention or suspension of potentially inappropriate medication. Secondary outcomes include the assessment of dementia syndromes, activities of daily living, social support health status, utilisation of health care resources and medication. Discussion The results will provide evidence for specific needs in ambulatory care for persons with dementia and will show effective ways to meet those needs. Qualification requirements will be evaluated, and the results will help to modify existing guidelines and treatment paths. Trial registration NCT01401582 PMID:22575023

Concepts of care for people with dementia.

PubMed

Rieckmann, Nina; Schwarzbach, Christoph; Nocon, Marc; Roll, Stefanie; Vauth, Christoph; Willich, Stefan N; Greiner, Wolfgang

2009-01-06

Today there are approximately one million people with dementia in Germany. If current demographic trends continue, this number is likely to rise substantially in the coming years. In the older population, dementia is the most frequent reason for long-term care. Because most forms of dementia cannot be cured, the aim of treatment is to delay disease progression and to maintain functioning and quality of life. What is the evidence on different approaches to the long-term usual care of patients with dementia in terms of common endpoints such as quality of life, and social behaviour? How is the cost-effectiveness of these concepts to be evaluated? Which ethical, social, or legal issues are discussed in this context? Based on a systematic literature review, we include randomized, controlled studies that had at least 30 participants and investigated one or more of the following approaches of dementia care: validation therapy/emotion-oriented usual care, ergotherapy, sensory stimulation, relaxation techniques, reality orientation therapy, and reminiscence therapy. Studies had to be published after 1996 (after 1990 for the economic part) in English or German. A total of 20 studies meet the inclusion criteria. Of these, three focus on validation therapy/emotion-oriented usual care, five on ergotherapy, seven on different kinds of sensory stimulation, two on reality orientation, two on reminiscence therapy, and one on a type of relaxation technique. There are no significant differences between the intervention and control groups in two of the three studies on validation therapy or emotion-oriented usual care, in two of the five studies on ergotherapy, in three of the seven studies on sensory stimulation, in both of the two studies on reminiscence therapy, and in the one study on relaxation. In the remaining ten studies, seven report some positive results in favour of the respective interventions, and three studies (ergotherapy, aroma therapy, and music/massage) report positive effects with respect to all of the endpoints measured. Six publications present economic results for usual-care-concepts. One study reports additional costs of 16 GBP (24.03 Euro (2006)) per patient per week for occupational therapie. Two publications declare incremental cost of 24.30 USD (25.62 Euro (2006)) per mini-mental-state-examination-(MMSE)-point gained per month respectively 1,380,000 ITL (506.21 Euro (2006)) per MMSE-point gained. Two publications focus on mixed interventions. One study reports the additional costs of an activity program (1.13 USD (1.39 Euro (2006)) per day per patient) and the other additional time for the usual care for mobile demented patients (average of 45 minutes per day per patient). WITH RESPECT TO ETHICAL AND SOCIAL ASPECTS THE DISCUSSION FOCUSSES ON THE PROBLEM OF AUTONOMY: dementia does not necessarily mean inability to decide over the participtation in studies. Legal questions address the financial situation of patients, the organisation of their care and the legal representation of dementia patients. Only a few studies on the nursing interventions considered in this report are methodologically robust. Most of the studies have a small number of participants and show substantial differences in terms of their inclusion criteria, implementation, and endpoints. THIS HETEROGENEITY IS REFLECTED IN THE RESULTS: in half of the studies, the interventions have no positive effects compared to the control group. The other half of the studies reports some positive effects with regard to specific endpoints. All of the economic studies are, from a methodologial and a thematic standpoint, not suitable to answer the questions raised. Ethical, social and legal aspects are discussed but not systematically analysed. The studies conducted to date do not provide sufficient evidence of neither efficacy nor cost-effectiveness for any of the nursing interventions considered in the present HTA. However, lack of evidence does not mean lack of efficacy. Instead, more methodologically sound studies are needed. Particullary desireable are studies reflecting the framework of dementia care in Germany. This holds also for the healtheconomic evaluations of the chosen interventions.

Physical Leisure Activities and their Role in Preventing Dementia: A Systematic Review.

PubMed

Stern, Cindy; Konno, Rie

Identifying protective factors or effective prevention strategies for dementia would result in considerable benefits by prolonging quality of life and reducing social burden. Current data suggests that participation in physical leisure activities may lower the risk of dementia by improving cognitive reserves. The objective of this review was to determine the best available evidence in relation to physical leisure activities in preventing dementia among older adults. Types of studies Randomised controlled trials (RCTs) and other experimental designs were considered for inclusion into the review. In the absence of clinical trials, other study designs such as cohort, case controlled and cross-sectional were considered. Only articles published in the English language were included with no publication date restriction.Types of participants Participants of interest were adults aged 60 and older with or without a clinical diagnosis of dementia, living in the community or residential care setting.Types of intervention This review considered studies that evaluated the effectiveness of any physical leisure activity in the prevention of dementia. Physical activities included gardening, playing sports, exercises, sightseeing and any other activities that required active movement of the body.Types of outcome measures The review considered studies that indicated the presence or absence of dementia as determined by cognitive function tests, mental examination scores, DSM classification (Diagnostic and Statistical Manual of Mental Disorders), and other valid dementia diagnostic tools. A search for published and unpublished literature in the English language was conducted using all major electronic databases. There was no publication date restriction. A three-step search strategy was developed using MeSH terminology and keywords to ensure that all material relevant to the review was captured. The methodological quality of included studies was assessed by two reviewers, who appraised each study independently, using standardised Joanna Briggs Institute (JBI) critical appraisal tools. Data was extracted from the studies that were identified as meeting the criteria for methodological quality using the standard JBI data extraction tools. Due to the heterogeneity of populations and interventions, results are presented in narrative form. Seventeen longitudinal studies were included in the review. Studies were grouped by stage of adult life participation when interventions were undertaken i.e. early-middle adulthood and late life. The evidence regarding the relationship between participation in physical activities during midlife and later life and the prevention of dementia was equivocal. The majority of studies showed limited benefits in engaging in physical activities and results indicated that some activities might be more beneficial than others. IMPLICATIONS FOR RESEARCH.

Exploring the theoretical foundations of visual art programmes for people living with dementia.

PubMed

Windle, Gill; Gregory, Samantha; Howson-Griffiths, Teri; Newman, Andrew; O'Brien, Dave; Goulding, Anna

2017-01-01

Despite the growing international innovations for visual arts interventions in dementia care, limited attention has been paid to their theoretical basis. In response, this paper explores how and why visual art interventions in dementia care influence changes in outcomes. The theory building process consists of a realist review of primary research on visual art programmes. This aims to uncover what works, for whom, how, why and in what circumstances. We undertook a qualitative exploration of stakeholder perspectives of art programmes, and then synthesised these two pieces of work alongside broader theory to produce a conceptual framework for intervention development, further research and practice. This suggests effective programmes are realised through essential attributes of two key conditions (provocative and stimulating aesthetic experience; dynamic and responsive artistic practice). These conditions are important for cognitive, social and individual responses, leading to benefits for people with early to more advanced dementia. This work represents a starting point at identifying theories of change for arts interventions, and for further research to critically examine, refine and strengthen the evidence base for the arts in dementia care. Understanding the theoretical basis of interventions is important for service development, evaluation and implementation.

Advanced dementia pain management protocols.

PubMed

Montoro-Lorite, Mercedes; Canalias-Reverter, Montserrat

Pain management in advanced dementia is complex because of neurological deficits present in these patients, and nurses are directly responsible for providing interventions for the evaluation, management and relief of pain for people suffering from this health problem. In order to facilitate and help decision-makers, pain experts recommend the use of standardized protocols to guide pain management, but in Spain, comprehensive pain management protocols have not yet been developed for advanced dementia. This article reflects the need for an integrated management of pain in advanced dementia. From the review and analysis of the most current and relevant studies in the literature, we performed an approximation of the scales for the determination of pain in these patients, with the observational scale PAINAD being the most recommended for the hospital setting. In addition, we provide an overview for comprehensive management of pain in advanced dementia through the conceptual framework «a hierarchy of pain assessment techniques by McCaffery and Pasero» for the development and implementation of standardized protocols, including a four-phase cyclical process (evaluation, planning/performance, revaluation and recording), which can facilitate the correct management of pain in these patients. Copyright © 2017 Elsevier España, S.L.U. All rights reserved.

Longitudinal evaluation of dementia care in German nursing homes: the “DemenzMonitor” study protocol

PubMed Central

2013-01-01

Background In Germany, the number of people with dementia living in nursing homes is rapidly increasing. Providing adequate care for their special needs is a challenge for institutions and their staff members. Because of the growing number of people with dementia, changes to the conceptual orientation of nursing homes have occurred. These changes include specialized living arrangements and psychosocial interventions recommended for people with dementia. Until now, the provision of dementia care and its association to the residents’ behavior and quality of life is not well investigated in Germany. The purpose of this study is to describe the provision of dementia care and to identify resident- as well as facility-related factors associated with residents behavior and quality of life. Methods/Design The DemenzMonitor study is designed as a longitudinal study that is repeated annually. Data will be derived from a convenience sample consisting of nursing homes across Germany. For the data collection, three questionnaires have been developed that measure information on the level of the nursing home, the living units, and the residents. Data collection will be performed by staff members from the nursing homes. The data collection procedure will be supervised by a study coordinator who is trained by the research team. Data analysis will be performed on each data level using appropriate techniques for descriptions and comparisons as well as longitudinal regression analysis. Discussion The DemenzMonitor is the first study in Germany that assesses how dementia care is provided in nursing homes with respect to living arrangements and recommended interventions. This study links the acquired data with residents’ outcome measurements, making it possible to evaluate different aspects and concepts of care. PMID:24237990

Bipolar Disorder in Nursing Homes: Impact on Antipsychotic Use, Diagnosis Patterns, and New Diagnoses in People with Dementia.

PubMed

Carnahan, Ryan M; Letuchy, Elena M

2018-01-01

Nursing home quality measures include the proportion of residents who receive antipsychotics. Residents with bipolar disorder are included even though antipsychotics are FDA-approved for this indication. We evaluated how including residents with bipolar disorder impacted the antipsychotic use quality measure for long-stay residents. We evaluated the agreement of minimum data set (MDS) bipolar disorder diagnoses with Medicare data, whether dementia was diagnosed before bipolar disorder, and how less-specific bipolar disorder diagnoses impacted findings. Cross-sectional study. Nursing homes in Iowa. 21,955 long-stay nursing home residents in the first quarter of 2014. We identified antipsychotic use and bipolar disorder using MDS data. We compared MDS bipolar disorder diagnoses with Chronic Conditions Warehouse (CCW) "ever" bipolar disorder indicators, and prior year claims. We compared CCW condition onset dates to identify bipolar disorder diagnosed after dementia. The mean (SD) proportion receiving antipsychotics was 19.6% (11.1%) with bipolar disorder and 18.3% (10.8%) without. The positive predictive value (PPV) of MDS bipolar disorder diagnoses was 80.2% versus CCW lifetime indicators, and 74.6% versus claims. PPV decreased by 27.1% when "bipolar disorder, unspecified" and "other bipolar disorders" diagnoses were excluded. Nearly three-quarters of residents with bipolar disorder had dementia. Over half of those with dementia had dementia first per CCW records. This proportion was lower among those with more specific bipolar disorder diagnoses or MDS bipolar disorder indicators. Bipolar disorder in nursing home residents is often first diagnosed after dementia using nonspecific diagnoses. This practice deserves further evaluation. Copyright © 2017 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

The impact of a visual arts program on quality of life, communication, and well-being of people living with dementia: a mixed-methods longitudinal investigation.

PubMed

Windle, Gill; Joling, Karlijn J; Howson-Griffiths, Teri; Woods, Bob; Jones, Catrin Hedd; van de Ven, Peter M; Newman, Andrew; Parkinson, Clive

2018-03-01

ABSTRACTBackground:Research reviews highlight methodological limitations and gaps in the evidence base for the arts in dementia care. In response, we developed a 12-week visual art program and evaluated the impact on people living with dementia through a mixed-methods longitudinal investigation. One hundred and twenty-five people living with mild to severe dementia were recruited across three research settings in England and Wales (residential care homes, a county hospital, and community venues). Quantitative and qualitative data on quality of life (QoL), communication and perceptions of the program were obtained through interviews and self-reports with participants and their carers. Eight domains of well-being were measured using a standardized observation tool, and data compared to an alternative activity with no art. Across all sites, scores for the well-being domains of interest, attention, pleasure, self-esteem, negative affect, and sadness were significantly better in the art program than the alternative condition. Proxy-reported QoL significantly improved between baseline and 3-month follow-up, but no improvements in QoL were reported by the participants with dementia. This was contrasted by their qualitative accounts, which described a stimulating experience important for social connectedness, well-being, and inner-strength. Communication deteriorated between baseline and follow-up in the hospital setting, but improved in the residential care setting. The findings highlight the potential for creative aging within dementia care, the benefits of art activities and the influence of the environment. We encourage dementia care providers and arts and cultural services to work toward embedding art activities within routine care provision.

Joint Occurrence of Pain and Sleep Disturbances in People with Dementia. A Systematic Review.

PubMed

Flo, Elisabeth; Bjorvatn, Bjorn; Corbett, Anne; Pallesen, Stale; Husebo, Bettina S

2017-01-01

Advancing age is associated with high prevalence of pain, sleep problems and dementia. Dementia is frequently accompanied by distressing behavioral and psychological symptoms, including sleep problems. The etiology of sleep problems in dementia is multifactorial. It has been suggested that untreated pain may contribute to sleep problems, and pain treatment has been shown to reduce sleep problems in people with dementia. This systematic review aims to provide an overview of the studies that have investigated the association and/or possible interaction between pain and sleep in dementia. A systematic search was performed in MEDLINE, EMBASE, Cochrane and PsychINFO, including text words and MESH terms covering dementia, pain and sleep. Also, reference lists in the included publications were examined to retrieve publications. Publications had to investigate sleep and pain in relation to dementia to be included in this review. The search produced 1750 independent hits. Out of the 49 publications studied in full text, 11 publications were included. Only one controlled trial was identified and represented the only insights to the possible interactional relationship between pain, sleep and dementia. Pain or pain intensity were related to sleep in 6 of the included studies, while the remaining studies could neither support nor contradict a relationship between sleep and pain in people with dementia. None of the studies employed objective sleep assessment. There is a need for high quality studies investigating the interaction between sleep and pain in people with dementia, using objective sleep measurements and pain assessment suitable for people with dementia. Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.org.

Prevalence of dementia and major dementia subtypes in Spanish populations: A reanalysis of dementia prevalence surveys, 1990-2008

PubMed Central

de Pedro-Cuesta, Jesús; Virués-Ortega, Javier; Vega, Saturio; Seijo-Martínez, Manuel; Saz, Pedro; Rodríguez, Fernanda; Rodríguez-Laso, Angel; Reñé, Ramón; de las Heras, Susana Pérez; Mateos, Raimundo; Martínez-Martín, Pablo; Manubens, José María; Mahillo-Fernandez, Ignacio; López-Pousa, Secundino; Lobo, Antonio; Reglà, Jordi Llinàs; Gascón, Jordi; García, Francisco José; Fernández-Martínez, Manuel; Boix, Raquel; Bermejo-Pareja, Félix; Bergareche, Alberto; Benito-León, Julián; de Arce, Ana; del Barrio, José Luis

2009-01-01

Background This study describes the prevalence of dementia and major dementia subtypes in Spanish elderly. Methods We identified screening surveys, both published and unpublished, in Spanish populations, which fulfilled specific quality criteria and targeted prevalence of dementia in populations aged 70 years and above. Surveys covering 13 geographically different populations were selected (prevalence period: 1990-2008). Authors of original surveys provided methodological details of their studies through a systematic questionnaire and also raw age-specific data. Prevalence data were compared using direct adjustment and logistic regression. Results The reanalyzed study population (aged 70 year and above) was composed of Central and North-Eastern Spanish sub-populations obtained from 9 surveys and totaled 12,232 persons and 1,194 cases of dementia (707 of Alzheimer's disease, 238 of vascular dementia). Results showed high variation in age- and sex-specific prevalence across studies. The reanalyzed prevalence of dementia was significantly higher in women; increased with age, particularly for Alzheimer's disease; and displayed a significant geographical variation among men. Prevalence was lowest in surveys reporting participation below 85%, studies referred to urban-mixed populations and populations diagnosed by psychiatrists. Conclusion Prevalence of dementia and Alzheimer's disease in Central and North-Eastern Spain is higher in females, increases with age, and displays considerable geographic variation that may be method-related. People suffering from dementia and Alzheimer's disease in Spain may approach 600,000 and 400,000 respectively. However, existing studies may not be completely appropriate to infer prevalence of dementia and its subtypes in Spain until surveys in Southern Spain are conducted. PMID:19840375

Systematic review of quantitative clinical gait analysis in patients with dementia.

PubMed

van Iersel, M B; Hoefsloot, W; Munneke, M; Bloem, B R; Olde Rikkert, M G M

2004-02-01

Diminished mobility often accompanies dementia and has a great impact on independence and quality of life. New treatment strategies for dementia are emerging, but the effects on gait remains to be studied objectively. In this review we address the general effects of dementia on gait as revealed by quantitative gait analysis. A systematic literature search with the (MESH) terms: 'dementia' and 'gait disorders' in Medline, CC, Psychlit and CinaHL between 1980-2002. Main inclusion criteria: controlled studies; patients with dementia; quantitative gait data. Seven publications met the inclusion criteria. All compared gait in Alzheimer's Disease (AD) with healthy elderly controls; one also assessed gait in Vascular Dementia (VaD). The methodology used was inconsistent and often had many shortcomings. However, there were several consistent findings: walking velocity decreased in dementia compared to healthy controls and decreased further with progressing severity of dementia. VaD was associated with a significant decrease in walking velocity compared to AD subjects. Dementia was associated with a shortened step length, an increased double support time and step to step variability. Gait in dementia is hardly analyzed in a well-designed manner. Despite this, the literature suggests that quantitative gait analysis can be sufficiently reliable and responsive to measure decline in walking velocity between subjects with and without dementia. More research is required to assess, both on an individual and a group level, how the minimal clinically relevant changes in gait in elderly demented patients should be defined and what would be the most responsive method to measure these changes.

Dementia registries around the globe and their applications: A systematic review.

PubMed

Krysinska, Karolina; Sachdev, Perminder S; Breitner, John; Kivipelto, Miia; Kukull, Walter; Brodaty, Henry

2017-09-01

Patient registries are valuable tools helping to address significant challenges in research, care, and policy. Registries, well embedded in many fields of medicine and public health, are relatively new in dementia. This systematic review presents the current situation in regards to dementia registries worldwide. We identified 31 dementia registries operating on an international, national, or local level between 1986 and 2016. More than half of the registries aimed to conduct or facilitate research, including preclinical research registries and registries recruiting research volunteers. Other dementia registries collected epidemiological or quality of care data. We present evidence of practical and economic outcomes of registries for research, clinical practice and policy, and recommendations for future development. Global harmonization of recruitment methods and minimum data would facilitate international comparisons. Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, and individuals with dementia and their caregivers. Copyright © 2017 the Alzheimer's Association. All rights reserved.

The Arts as a Medium for Care and Self-Care in Dementia: Arguments and Evidence.

PubMed

Schneider, Justine

2018-06-01

The growing prevalence of dementia, combined with an absence of effective pharmacological treatments, highlights the potential of psychosocial interventions to alleviate the effects of dementia and enhance quality of life. With reference to a manifesto from the researcher network Interdem, this paper shows how arts activities correspond to its definition of psycho-social care. It presents key dimensions that help to define different arts activities in this context, and illustrates the arts with reference to three major approaches that can be viewed online; visual art, music and dance. It goes on to discuss the features of each of these arts activities, and to present relevant evidence from systematic reviews on the arts in dementia in general. Developing the analysis into a template for differentiating arts interventions in dementia, the paper goes on to discuss implications for future research and for the uptake of the arts by people with dementia as a means to self-care.

Ginkgo biloba for prevention of dementia: a systematic review and meta-analysis.

PubMed

Charemboon, Thammanard; Jaisin, Kankamol

2015-05-01

To determine the efficacy of Ginkgo biloba for the prevention of dementia in individuals without dementia. English databases including Medline, Embase, Cochrane Library and PsycINFO, were searched, and randomized double-blind controlled studies comparing Ginkgo biloba with placebo in prevention of dementia were considered. Two trials met inclusion criteria. Methodological quality was assessed using the Jadad criteria. Meta-analysis of the two trials involving 5,889 participants indicated no significant difference in dementia rate between Ginkgo biloba and the placebo (347/2,951 vs. 330/2,938, odds ratio = 1.05, 95% CI 0.89-1.23) and there was no considerable heterogeneity between the trials. The two studies revealed no statistically significant differences in the rate of serious adverse effect between Ginko biloba and the placebo. There is no convincing evidence from this review that demonstrated Ginkgo biloba in late-life can prevent the development of dementia. Using it for this indication is not suggested at present.

Maintenance Cognitive Stimulation Therapy (CST) for dementia: A single-blind, multi-centre, randomized controlled trial of Maintenance CST vs. CST for dementia

PubMed Central

2010-01-01

Background Psychological treatments for dementia are widely used in the UK and internationally, but only rarely have they been standardised, adequately evaluated or systematically implemented. There is increasing recognition that psychosocial interventions may have similar levels of effectiveness to medication, and both can be used in combination. Cognitive Stimulation Therapy (CST) is a 7-week cognitive-based approach for dementia that has been shown to be beneficial for cognition and quality of life and is cost-effective, but there is less conclusive evidence for the effects of CST over an extended period. Methods/Design This multi-centre, pragmatic randomised controlled trial (RCT) to assess the effectiveness and cost-effectiveness of Maintenance CST groups for dementia compares a intervention group who receive CST for 7 weeks followed by the Maintenance CST programme once a week for 24 weeks with the control group who receive CST for 7 weeks, followed by treatment as usual for 24 weeks. The primary outcome measures are quality of life of people with dementia assessed by the QoL-AD and cognition assessed by the ADAS-Cog. Secondary outcomes include the person with dementia's mood, behaviour, activities of daily living, ability to communicate and costs; as well as caregiver health-related quality of life. Using a 5% significance level, comparison of 230 participants will yield 80% power to detect a standardised difference of 0.39 on the ADAS-Cog between the groups. The trial includes a cost-effectiveness analysis from a public sector perspective. Discussion A pilot study of longer-term Maintenance CST, offering 16 weekly sessions of maintenance following the initial CST programme, previously found a significant improvement in cognitive function (MMSE) for those on the intervention group. The study identified the need for a large-scale, multi-centre RCT to define the potential longer-term benefits of continuing the therapy. This study aims to provide definitive evidence of the potential efficacy of maintenance CST and establish how far the long-term benefits can be compared with antidementia drugs such as cholinesterase inhibitors. Trial Registration ISRCTN26286067 PMID:20426866

Huperzine A for vascular dementia

PubMed Central

Hao, Zilong; Liu, Ming; Liu, Zhiqin; Lu, DongHao

2014-01-01

Background Huperzine A, a form of herbal medicine, has been considered as an alternative treatment for vascular dementia (VaD) in China. Objectives To assess the efficacy and safety of Huperzine A in patients with vascular dementia. Search methods We searched ALOIS: the Cochrane Dementia and Cognitive Improvement Group’s Specialized Register on 10 February 2011 using the terms: chinese, plants, huperzine, HUP, ayapin, scoparon. ALOIS contains records of clinical trials identified from monthly searches of a number of major healthcare databases (The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL, LILACS), numerous trial registries and grey literature sources. We also searched the following databases in March 2011 using the terms ‘Huperzine A’, ‘Shishanjianjia’, ‘Haboyin’ and ‘Shuangyiping’: The Chinese Biomedical Database (CBM) (1977 to March 2011); Chinese Science and Technique Journals Database (VIP) (1989 to March 2011); China National Knowledge Infrastructure (CNKI) (1979 to March 2011); Google (March 2011). In addition, we searched relevant reference lists. We also contacted researchers to request additional information where necessary. Selection criteria We considered randomized controlled trials comparing Huperzine A with placebo in people with vascular dementia eligible for inclusion. Data collection and analysis Two review authors independently applied the inclusion criteria, assessed trial quality and extracted the data. We resolved any disagreement by discussion. Main results We included only one small trial, involving 14 participants with vascular dementia. No significant effect of Huperzine A on cognitive function measured by MMSE (WMD 2.40; 95% CI −4.78 to 9.58) was observed. There was a significant beneficial effect of Huperzine A on performance of activities of daily living (WMD −13.00; 95% CI −23.24 to −2.76) after six months of treatment. No deaths from any cause at the end of treatment were reported. Behaviour, quality of life and caregiver burden were not assessed in the included trial. Authors’ conclusions There is currently no high quality evidence to support the use of Huperzine A for the treatment of vascular dementia. Further randomized placebo controlled trials are needed to determine whether there is worthwhile benefit. PMID:19370686

Maintenance Cognitive Stimulation Therapy (CST) for dementia: a single-blind, multi-centre, randomized controlled trial of Maintenance CST vs. CST for dementia.

PubMed

Aguirre, Elisa; Spector, Aimee; Hoe, Juanita; Russell, Ian T; Knapp, Martin; Woods, Robert T; Orrell, Martin

2010-04-28

Psychological treatments for dementia are widely used in the UK and internationally, but only rarely have they been standardised, adequately evaluated or systematically implemented. There is increasing recognition that psychosocial interventions may have similar levels of effectiveness to medication, and both can be used in combination. Cognitive Stimulation Therapy (CST) is a 7-week cognitive-based approach for dementia that has been shown to be beneficial for cognition and quality of life and is cost-effective, but there is less conclusive evidence for the effects of CST over an extended period. This multi-centre, pragmatic randomised controlled trial (RCT) to assess the effectiveness and cost-effectiveness of Maintenance CST groups for dementia compares a intervention group who receive CST for 7 weeks followed by the Maintenance CST programme once a week for 24 weeks with the control group who receive CST for 7 weeks, followed by treatment as usual for 24 weeks.The primary outcome measures are quality of life of people with dementia assessed by the QoL-AD and cognition assessed by the ADAS-Cog. Secondary outcomes include the person with dementia's mood, behaviour, activities of daily living, ability to communicate and costs; as well as caregiver health-related quality of life. Using a 5% significance level, comparison of 230 participants will yield 80% power to detect a standardised difference of 0.39 on the ADAS-Cog between the groups. The trial includes a cost-effectiveness analysis from a public sector perspective. A pilot study of longer-term Maintenance CST, offering 16 weekly sessions of maintenance following the initial CST programme, previously found a significant improvement in cognitive function (MMSE) for those on the intervention group. The study identified the need for a large-scale, multi-centre RCT to define the potential longer-term benefits of continuing the therapy. This study aims to provide definitive evidence of the potential efficacy of maintenance CST and establish how far the long-term benefits can be compared with antidementia drugs such as cholinesterase inhibitors.

Decision-Making Involvement of Individuals with Dementia

ERIC Educational Resources Information Center

Menne, Heather L.; Whitlatch, Carol J.

2007-01-01

Purpose: Research underscores how autonomy and decision-making involvement may help to enhance the quality of life of older adults; however, individuals with dementia are often excluded from decision making that is related to their daily functioning. In this study we use a modified version of the Stress Process Model to consider the stress process…

Quality Outcomes in Group Home Dementia Care for Adults with Intellectual Disabilities

ERIC Educational Resources Information Center

Janicki, M. P.

2011-01-01

Background: Dementia, as a public health challenge, is a phenomenon vexing many care organisations providing specialised residential and family supports for older adults with intellectual disabilities. With increasing survivorship to ages when risk is greatest, expectations are that many more adults in service will present with cognitive decline…

Quality Care for Down Syndrome and Dementia

ERIC Educational Resources Information Center

Tedder, Amanda

2012-01-01

This article will give both examples and methods to use when providing services to individuals with a dual diagnosis of Down syndrome and Dementia. This is a prevalent issue that most care facilities are facing as the population with Down syndrome age. Staff training, schedule adjustments, living space adjustments and a new thought process…

A systematic review of treatments for Mild Cognitive Impairment

PubMed Central

Cooper, Claudia; Li, Ryan; Lyketsos, Constantine; Livingston, Gill

2014-01-01

Background More people are presenting with mild cognitive impairment (MCI), frequently a precursor to dementia but we do not know how to reduce deterioration. Aims To systematically review Randomised Controlled Trials (RCTs) evaluating effects of any intervention for MCI on cognitive, neuropsychiatric, functional, global outcomes, life quality, or incident dementia. Methods We reviewed the 41 studies fitting predetermined criteria, assessed validity using a checklist, calculated standardised outcomes, and prioritised primary outcome findings in placebo-controlled studies. Results The strongest evidence was that cholinesterase inhibitors did not reduce incident dementia. Cognition improved in single trials of: a heterogeneous psychological group intervention over 6 months; piribedil, a dopamine agonist over 3 months; and donepezil over 48 weeks. Nicotine improved attention over 6 months. There was equivocal evidence that Huannao Yicong improved cognition and social functioning. Conclusions There was no replicated evidence that any intervention was effective. Cholinesterase inhibitors and rofecoxib are ineffective in preventing dementia. Further good quality RCTs are necessary and preliminary evidence suggests these should include trials of psychological group interventions and piribedil. PMID:24085737

Buying time: a rationale for examining the use of circadian rhythm and sleep interventions to delay progression of mild cognitive impairment to Alzheimer's disease.

PubMed

Landry, Glenn J; Liu-Ambrose, Teresa

2014-01-01

As of 2010, the worldwide economic impact of dementia was estimated at $604 billion USD; and without discovery of a cure or effective interventions to delay disease progression, dementia's annual global economic impact is expected to surpass $1 trillion USD as early as 2030. Alzheimer's disease (AD) is the leading cause of dementia accounting for over 75% of all cases. Toxic accumulation of amyloid beta (Aβ), either by overproduction or some clearance failure, is thought to be an underlying mechanism of the neuronal cell death characteristic of AD-though this amyloid hypothesis has been increasingly challenged in recent years. A compelling alternative hypothesis points to chronic neuroinflammation as a common root in late-life degenerative diseases including AD. Apolipoprotein-E (APOE) genotype is the strongest genetic risk factor for AD: APOE-ε4 is proinflammatory and individuals with this genotype accumulate more Aβ, are at high risk of developing AD, and almost half of all AD patients have at least one ε4 allele. Recent studies suggest a bidirectional relationship exists between sleep and AD pathology. Sleep may play an important role in Aβ clearance, and getting good quality sleep vs. poor quality sleep might reduce the AD risk associated with neuroinflammation and the ε4 allele. Taken together, these findings are particularly important given the sleep disruptions commonly associated with AD and the increased burden disrupted sleep poses for AD caregivers. The current review aims to: (1) identify individuals at high risk for dementia who may benefit most from sleep interventions; (2) explore the role poor sleep quality plays in exacerbating AD type dementia; (3) examine the science of sleep interventions to date; and (4) provide a road map in pursuit of comprehensive sleep interventions, specifically targeted to promote cognitive function and delay progression of dementia.

Testing the evidence integration triangle for implementation of interventions to manage behavioral and psychological symptoms associated with dementia: Protocol for a pragmatic trial.

PubMed

Resnick, Barbara; Kolanowski, Ann; Van Haitsma, Kimberly; Galik, Elizabeth; Boltz, Marie; Ellis, Jeanette; Behrens, Liza; Flanagan, Nina M; Eshraghi, Karen J; Zhu, Shijun

2018-06-01

Behavioral and psychological symptoms of dementia (BPSD) include aggression, agitation, resistiveness to care, depression, anxiety, apathy, and hallucinations. BPSD are common in nursing home residents and can be ameliorated using person-centered approaches. Despite regulatory requirements, less than 2% of nursing homes consistently implement person-centered behavioral approaches. In a National Institute of Nursing Research-funded research protocol, we are implementing a pragmatic cluster randomized clinical trial designed to enable staff in nursing homes to reduce BPSD using behavioral approaches while optimizing function, preventing adverse events, and improving quality of life of residents. The implementation is based on use of the Evidence Integration Triangle (EIT), a parsimonious, community-engaged participatory framework that is well suited to the complexity and variability in the nursing home environment. A total of 50 nursing home communities will be randomized to EIT-4-BPSD or education only. Primary Aim 1 is to determine if communities exposed to EIT-4-BPSD demonstrate evidence of implementation evaluated by the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) criteria. Primary Aim 2 is to evaluate the feasibility, utility, and cost of the EIT approach in EIT-4-BPSD communities. © 2018 Wiley Periodicals, Inc.

Prediction of Alzheimer's Disease Dementia: Data from the GuidAge Prevention Trial.

PubMed

Di Stefano, Francesca; Epelbaum, Stephane; Coley, Nicola; Cantet, Christelle; Ousset, Pierre-Jean; Hampel, Harald; Bakardjian, Hovagim; Lista, Simone; Vellas, Bruno; Dubois, Bruno; Andrieu, Sandrine

2015-01-01

In therapeutic trials, it is crucial to identify Alzheimer's disease (AD) at its prodromal stage. We assessed the accuracy of the free and cued selective reminding test (FCSRT) compared to other cognitive tests to predict AD dementia in subjects with subjective cognitive decline or mild cognitive impairment. Subjects from the placebo group of the GuidAge trial over 70 years old and without clinical signs of dementia at baseline who completed the 5-year follow-up free of dementia (n = 840) or developed AD dementia (n = 73) were included in our study. Among all the tests, the sum of the 3 free recall of the FCSRT (FCSRT-FR) and the sum of free and cued recall (FCSRT-TR) yielded the best results to predict AD dementia occurrence (all p values <0.05 for comparison of FCSRT-FR ROC and MMSE, CDRsb, and CVF ROCs). FCSRT-FR had an area under the ROC curve of 0.799 (95% CI 0.738-0.85) and the optimal cut-off was 20 (se 68.06% , sp 81.43% , PPV 23.90% , NPV 96,75%). Concerning FCSRT-TR, the AUC was 0.776 and the optimal cut-off was 42 (se 62.5% , sp 82.26% , PPV 23.20% and NPV 96.24%). This study sets the framework for implementing the FCSRT in clinical and therapeutic trials for efficient subject selection.

Service innovation through social robot engagement to improve dementia care quality.

PubMed

Chu, Mei-Tai; Khosla, Rajiv; Khaksar, Seyed Mohammad Sadegh; Nguyen, Khanh

2017-01-01

Assistive technologies, such as robots, have proven to be useful in a social context and to improve the quality of life for people with dementia (PwD). This study aims to show how the engagement between two social robots and PwD in Australian residential care facilities can improve care quality. An observational method is adopted in the research methodology to discover behavioural patterns during interactions between the robots and PwD. This observational study has undertaken to explore the improvement arising from: (1) approaching social baby-face robots (AR), (2) experiencing pleasure engaging with the robots (P), (3) interacting with the robots (IR), and (4) interacting with others (IO). The findings show that social robots can improve diversion therapy service value to PwD through sensory enrichment, positive social engagement, and entertainment. More than 11,635 behavioral reactions, such as facial expressions and gestures, from 139 PwD over 5 years were coded, in order to identify the engagement effectiveness between PwD and two social robots named Sophie and Jack. The results suggest that these innovative social robots can improve the quality of care for people suffering from dementia.

Quantity of Movement as a Measure of Engagement for Dementia: The Influence of Motivational Disorders

PubMed Central

Perugia, Giulia; Rodríguez-Martín, Daniel; Boladeras, Marta Díaz; Mallofré, Andreu Català; Barakova, Emilia; Rauterberg, Matthias

2017-01-01

Engagement in activities is crucial to improve quality of life in dementia. Yet, its measurement relies exclusively on behavior observation and the influence that behavioral and psychological symptoms of dementia (BPSD) have on it is overlooked. This study investigated whether quantity of movement, gauged with a wrist-worn accelerometer, could be a sound measure of engagement and whether apathy and depression negatively affected engagement. Fourteen participants with dementia took part in 6 sessions of activities: 3 of cognitive games (eg, jigsaw puzzles) and 3 of robot play (Pleo). Results highlighted significant correlations between quantity of movement and observational scales of engagement and a strong negative influence of apathy and depression on engagement. Overall, these findings suggest that quantity of movement could be used as an ancillary measure of engagement and underline the need to profile people with dementia according to their concurrent BPSD to better understand their engagement in activities. PMID:29148293

Three Methods of Assessing Values for Advance Care Planning

PubMed Central

Karel, Michele J.; Moye, Jennifer; Bank, Adam; Azar, Armin R.

2016-01-01

Advance care planning ideally includes communication about values between patients, family members, and care providers. This study examined the utility of health care values assessment tools for older adults with and without dementia. Adults aged 60 and older, with and without dementia, completed three values assessment tools—open-ended, forced-choice, and rating scale questions—and named a preferred surrogate decision maker. Responses to forced-choice items were examined at 9-month retest. Adults with and without dementia appeared equally able to respond meaningfully to questions about values regarding quality of life and health care decisions. People with dementia were generally as able as controls to respond consistently after 9 months. Although values assessment methods show promise, further item and scale development work is needed. Older adults with dementia should be included in clarifying values for advance care planning to the extent that they desire and are able. PMID:17215205

Exposure to air pollution as a potential contributor to cognitive function, cognitive decline, brain imaging, and dementia: a systematic review of epidemiologic research

PubMed Central

Power, Melinda C.; Adar, Sara D.; Yanosky, Jeff D.; Weuve, Jennifer

2016-01-01

Background Dementia is a devastating condition typically preceded by a long prodromal phase characterized by accumulation of neuropathology and accelerated cognitive decline. A growing number of epidemiologic studies have explored the relation between air pollution exposure and dementia-related outcomes. Methods We undertook a systematic review, including quality assessment, to interpret the collective findings and describe methodological challenges that may limit study validity. Articles, which were identified according to a registered protocol, had to quantify the association of an air pollution exposure with cognitive function, cognitive decline, a dementia-related neuroimaging feature, or dementia. Results We identified 18 eligible published articles. The quality of most studies was adequate to exemplary. Almost all reported an adverse association between at least one pollutant and one dementia-related outcome. However, relatively few studies considered outcomes that provide the strongest evidence for a causal effect, such as within-person cognitive or pathologic changes. Reassuringly, differential selection would likely bias toward a protective association in most studies, making it unlikely to account for observed adverse associations. Likewise, using a formal sensitivity analysis, we found that unmeasured confounding is also unlikely to explain reported adverse associations. Discussion We also identified several common challenges. First, most studies of incident dementia identified cases from health system records. As dementia in the community is underdiagnosed, this could generate either non-differential or differential misclassification bias. Second, almost all studies used recent air pollution exposures as surrogate measures of long-term exposure. Although this approach may be reasonable if the measured and etiologic exposure windows are separated by a few years, its validity is unknown over longer intervals. Third, comparing the magnitude of associations may not clearly pinpoint which, if any, pollutants are the probable causal agents, because the degree of exposure misclassification differs across pollutants. The epidemiologic evidence, alongside evidence from other lines of research, provides support for a relation of air pollution exposure to dementia. Future studies with improved design, analysis and reporting would fill key evidentiary gaps and provide a solid foundation for recommendations and possible interventions. PMID:27328897

[Dementia in families with a Turkish migration background. Organization and characteristics of domestic care arrangements].

PubMed

Mogar, M; von Kutzleben, M

2015-07-01

Until recently public health and health services research has not been concerned with people suffering from dementia with a Turkish migration background as a priority. There is little evidence about the situation of this population; however, it is known that these individuals almost always live with their families and are cared for by their families generally without seeking professional support. The aim of this study was to gain insight into the organization and characteristics of home-based care arrangements for people suffering from dementia with a Turkish migration background from the family carer's perspective. Interviews with seven family carers. The principles of the grounded theory served as a framework for data analysis. Unconditional commitment to caring for a family member with dementia was identified as the main characteristic of care arrangements in families with a Turkish migration background. Dementia is not a factor that has an impact on the decision of families to assume care responsibility for an affected family member and there is a lack of knowledge about dementia in general. There are various inhibiting factors for the utilization of formal services and the family carers in this sample complained that the available services are not culturally sensitive. There seems to be an extensive need for information and counselling regarding care dependency and dementia among the Turkish community. To provide personal-centred care and relief to these families in the future, efforts should be made to adapt the current care system to the specific needs and demands of this population. Cultural sensitivity in general and individual subjective needs of persons with a Turkish migration background affected by dementia should be taken into account.

Effectiveness of interventions to directly support food and drink intake in people with dementia: systematic review and meta-analysis.

PubMed

Abdelhamid, Asmaa; Bunn, Diane; Copley, Maddie; Cowap, Vicky; Dickinson, Angela; Gray, Lucy; Howe, Amanda; Killett, Anne; Lee, Jin; Li, Francesca; Poland, Fiona; Potter, John; Richardson, Kate; Smithard, David; Fox, Chris; Hooper, Lee

2016-01-22

Eating and drinking difficulties are recognised sources of ill health in people with dementia. In the EDWINA (Eating and Drinking Well IN dementiA) systematic review we aimed to assess effectiveness of interventions to directly improve, maintain or facilitate oral food and drink intake, nutrition and hydration status, in people with cognitive impairment or dementia (across all settings, levels of care and support, types and degrees of dementia). Interventions included oral nutrition supplementation, food modification, dysphagia management, eating assistance and supporting the social element of eating and drinking. We comprehensively searched 13 databases for relevant intervention studies. The review was conducted with service user input in accordance with Cochrane Collaboration's guidelines. We duplicated assessment of inclusion, data extraction, and validity assessment, tabulating data, carrying out random effects meta-analysis and narrative synthesis. Forty-three controlled interventions were included, disappointingly none were judged at low risk of bias. Oral nutritional supplementation studies suggested small positive short term but unclear long term effects on nutritional status. Food modification or dysphagia management studies were smaller and of low quality, providing little evidence of an improved nutritional status. Eating assistance studies provided inconsistent evidence, but studies with a strong social element around eating/drinking, although small and of low quality provided consistent suggestion of improvements in aspects of quality of life. There were few data to address stakeholders' questions. We found no definitive evidence on effectiveness, or lack of effectiveness, of specific interventions but studies were small and short term. People with cognitive impairment and their carers have to tackle eating problems despite this lack of evidence, so promising interventions are listed. The need remains for high quality trials tailored for people with cognitive impairment assessing robust outcomes. The systematic review protocol was registered (CRD42014007611) and is published, with the full MEDLINE search strategy, on Prospero.

Shared decision-making in dementia care planning: barriers and facilitators in two European countries.

PubMed

Mariani, Elena; Vernooij-Dassen, Myrra; Koopmans, Raymond; Engels, Yvonne; Chattat, Rabih

2017-01-01

Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands. Focus group interviews were conducted with healthcare professionals who, after being trained, applied the SDM framework. Content analysis was used to analyze the data. Six months after the feasibility trial, focus group interviews with healthcare professionals (n = 10 in Italy; n = 9 in the Netherlands) were held. We found 6 themes and 15 categories. Within these themes, facilitators and barriers were identified. The categories of team collaboration, communication skills and nursing home policy were found to be facilitators to the implementation process, whereas regulations, lack of funding and of involvement of family caregivers were the main barriers. Family attitudes towards SDM could be both. The main difference between countries concerned the residents' cognitive status that influenced their degree of involvement. Communication skills training for professionals, training of family caregivers, and involvement of the management in the implementation process seem to be crucial factors in successfully implementing SDM in nursing homes, and increasing the involvement of families and dementia residents in decision-making.

Involving people with dementia in developing an interactive web tool for shared decision-making: experiences with a participatory design approach.

PubMed

Span, Marijke; Hettinga, Marike; Groen-van de Ven, Leontine; Jukema, Jan; Janssen, Ruud; Vernooij-Dassen, Myrra; Eefsting, Jan; Smits, Carolien

2018-06-01

The aim of this study was at gaining insight into the participatory design approach of involving people with dementia in the development of the DecideGuide, an interactive web tool facilitating shared decision-making in their care networks. An explanatory case study design was used when developing the DecideGuide. A secondary analysis focused on the data gathered from the participating people with dementia during the development stages: semi-structured interviews (n = 23), four focus group interviews (n = 18), usability tests (n = 3), and a field study (n = 4). Content analysis was applied to the data. Four themes showed to be important regarding the participation experiences of involving people with dementia in research: valuable feedback on content and design of the DecideGuide, motivation to participate, perspectives of people with dementia and others about distress related to involvement, and time investment. People with dementia can give essential feedback and, therefore, their contribution is useful and valuable. Meaningful participation of people with dementia takes time that should be taken into account. It is important for people with dementia to be able to reciprocate the efforts others make and to feel of significance to others. Implications for Rehabilitation People with dementia can contribute meaningfully to the content and design and their perspective is essential for developing useful and user-friendly tools. Participating in research activities may contribute to social inclusion, empowerment, and quality of life of people with dementia.

Diagnostic uncertainty in a severely demented male patient: a case report

PubMed Central

Maiovis, Pantelis; Gavopoulou, Evgenia; Eleftheriou, Marina; Tsokanari, Ioanna; Tsolaki, Magda

2008-01-01

Introduction Current trends in dementia research focus on early and accurate diagnosis. In clinical practice however, this is not always possible, as multiple underlying pathologies produce mixed dementia syndromes. Furthermore, patients with severe dementia are often underestimated. Case presentation We present a case of a 71 year old Caucasian male with severe Alzheimer's Disease, bedridden and fully dependent in activities of everyday living, whose general cognitive function is almost intact. We emphasize on the diverse underlying pathologies contributing to this intriguing clinical presentation and to diagnostic uncertainty. Conclusion Understanding the complexity of the dementia process in every patient using a multidimensional approach, contributes to more rational management strategies and finally to high quality care for patients and caregivers. PMID:18928571

Testing family-centered, function-focused care in hospitalized persons with dementia.

PubMed

Boltz, Marie; Chippendale, Tracy; Resnick, Barbara; Galvin, James E

2015-01-01

Hospital-acquired disability causes decreased quality of life for patients with dementia and family caregivers, and increased societal costs. A comparative, repeated measures study tested the feasibility and preliminary efficacy of the family-centered, function-focused care intervention (Fam-FFC) in dyads of hospitalized, medical patients with dementia and family caregivers (FCGs). The intervention group demonstrated better activities of daily living and walking performance, and less severity/duration of delirium and hospital readmissions, but no significant differences in gait/balance. FCGs showed increased preparedness for caregiving and less anxiety but no significant differences in depression, strain and mutuality. Fam-FFC presents a possible pathway to meeting the Triple Aim of improved patient care, improved patient health and reduced costs for persons with dementia.

Research priorities to reduce the global burden of dementia by 2025.

PubMed

Shah, Hiral; Albanese, Emiliano; Duggan, Cynthia; Rudan, Igor; Langa, Kenneth M; Carrillo, Maria C; Chan, Kit Yee; Joanette, Yves; Prince, Martin; Rossor, Martin; Saxena, Shekhar; Snyder, Heather M; Sperling, Reisa; Varghese, Mathew; Wang, Huali; Wortmann, Marc; Dua, Tarun

2016-11-01

At the First WHO Ministerial Conference on Global Action Against Dementia in March, 2015, 160 delegates, including representatives from 80 WHO Member States and four UN agencies, agreed on a call for action to reduce the global burden of dementia by fostering a collective effort to advance research. To drive this effort, we completed a globally representative research prioritisation exercise using an adapted version of the Child Health and Nutrition Research Initiative method. We elicited 863 research questions from 201 participants and consolidated these questions into 59 thematic research avenues, which were scored anonymously by 162 researchers and stakeholders from 39 countries according to five criteria. Six of the top ten research priorities were focused on prevention, identification, and reduction of dementia risk, and on delivery and quality of care for people with dementia and their carers. Other priorities related to diagnosis, biomarkers, treatment development, basic research into disease mechanisms, and public awareness and understanding of dementia. Research priorities identified by this systematic international process should be mapped onto the global dementia research landscape to identify crucial gaps and inform and motivate policy makers, funders, and researchers to support and conduct research to reduce the global burden of dementia. Efforts are needed by all stakeholders, including WHO, WHO Member States, and civil society, to continuously monitor research investments and progress, through international platforms such as a Global Dementia Observatory. With established research priorities, an opportunity now exists to translate the call for action into a global dementia action plan to reduce the global burden of dementia. Copyright © 2016 Elsevier Ltd. All rights reserved.

Football and dementia: A qualitative investigation of a community based sports group for men with early onset dementia.

PubMed

Carone, Laura; Tischler, Victoria; Dening, Tom

2016-11-01

This study investigates the impact of a weekly group providing sport and physical activities for men with early onset dementia established by Notts County Football in the Community (NCFC). There were three aims: to investigate the effect of early onset dementia on individuals with the condition and their carers; to examine the perceptions of current levels of service provision for people with early onset dementia; and to analyse the impact of the group. Men with dementia (n = 5) attending the sessions, their carers (n = 5), NCFC coaching staff (n = 5) and people organizing/facilitating the sessions (n = 5) were interviewed. Semi-structured interviews explored the participants' experiences of dementia, their opinions on current service provisions and on the sessions. Data were analysed using thematic analysis. Four main themes were found: loss related to the condition of dementia and its impact on relationships ('Loss'); lack of age-appropriate services for people with early onset dementia ('Lack of Resources'); enjoyment and positive anticipation related to the group for all involved ('Enjoyment and Anticipation'); and 'the Notts County Effect' which attributed the success of the sessions to the strong brand of the football club, and to personalized service in a "dementia-free" environment. The NCFC sessions provided a safe low-cost intervention with positive effects upon quality of life for both people with early onset dementia, their carers and the staff involved. This suggests that the service may be valuable to a wider range of people living in different areas. © The Author(s) 2014.

[Work related predictors for "satisfaction with dementia care" among nurses working in nursing homes].

PubMed

Schmidt, Sascha G; Palm, Rebecca; Dichter, Martin; Hasselhorn, Hans Martin

2011-04-01

In German nursing homes dementia care is gaining increasing relevance. Dementia care is known to bear the high risk of a substantial occupational burden among nursing staff. Within this context, the "nurses' satisfaction with the care for residents with dementia" is investigated. Secondary data of the German 3q-study is used to assess degrees of nurses' satisfaction with the care for residents with dementia and potential work related predictors. Data from 813 nurses and nursing aides working in 53 nursing homes were included. 42% of all nursing staff was dissatisfied with the care for residents with dementia in their institution, however, pronounced differences were found between the institutions. Registered nurses and nurses in leading positions were more dissatisfied. A multiple regression analysis indicates that high "quantitative demands", low "leadership quality" and "social interaction with other professions" are strong predictors for nurses' satisfaction with the care for residents with dementia. No association was found for "emotional demands" and "possibilities for development". The results indicate that the "nurses" satisfaction with the care for residents with dementia" may be a highly relevant work factor for nursing staff in nursing homes which deserves additional attention in practice and research. The high predictive power of several work organisational factors implies that preventive action should also include work organisational factors.

A virtual reality intervention to improve the understanding and empathy for people with dementia in informal caregivers: results of a pilot study.

PubMed

Wijma, Eva M; Veerbeek, Marjolein A; Prins, Marleen; Pot, Anne Margriet; Willemse, Bernadette M

2017-07-10

Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted. A pre-test-post-test design was used. Informal caregivers filled out questionnaires assessing person-centeredness, empathy, perceived pressure from informal care, perceived competence and quality of the relationship. At post-test, additional questions about TDL's feasibility were asked. Thirty-five caregivers completed the pre-test and post-test. Most participants were satisfied with TDL and stated that TDL gave more insight in the perception of the person with dementia. The simulation movie was graded 8.03 out of 10 and the e-course 7.66. Participants significantly improved in empathy, confidence in caring for the person with dementia, and positive interactions with the person with dementia. TDL is feasible for informal caregivers and seems to lead to understanding of and insight in the experience of people with dementia. Therefore, TDL could support informal caregivers in their caregiving role.

Resourse Use and Disease Couse in dementia - Nursing Home (REDIC-NH), a longitudinal cohort study; design and patient characteristics at admission to Norwegian nursing homes.

PubMed

Røen, Irene; Selbæk, Geir; Kirkevold, Øyvind; Engedal, Knut; Testad, Ingelin; Bergh, Sverre

2017-05-22

Earlier studies of nursing home patients show a high prevalence of dementia, neuropsychiatric symptoms (NPS), pain, and dependency in activities of daily living. The REDIC-NH cohort was set up to study the disease course and the resources used in patients with dementia in Norway. The aim of this paper was to describe the methods and the data collection, and to present selected data about patients at admission to a nursing home. We included 696 patients at admission to a nursing home and followed them with biannual assessments until death. Baseline data were collected between March 2012 and November 2014. In October 2016, patients had either completed an 18-month follow-up (n = 349), passed 18 months without assessments (n = 22), or left the study (n = 324). Data on demographics, cognition, NPS, activities of daily living (ADL) functioning, physical health, medication, Quality of Life (QoL), resource use, and caregiver burden, in addition to DNA samples were collected. Mean age of the participants at inclusion was 84.5 years (SD 7.5, range 50 - 105), 63.9% were women. According to data collected in the study, 83.8% had dementia, but only 55.9% of them had a diagnosis of dementia registered in their records. The most frequent dementia diagnosis was Alzheimer's disease, which was present in 71% of those with dementia. Patients with dementia more often experienced delusions, hallucinations, agitation, anxiety, disinhibition, irritability, and aberrant motor behaviour compared to patients without dementia. Depression and anxiety were the most common NPS symptoms. Dementia and NPS were highly prevalent among persons admitted to nursing homes. Only 55.9% of the patients with dementia had a diagnosis of dementia registered in their records.

Improving Dementia Long-Term Care

PubMed Central

Shih, Regina A.; Concannon, Thomas W.; Liu, Jodi L.; Friedman, Esther M.

2014-01-01

Abstract In 2010, 15 percent of Americans older than age 70 had dementia, and the number of new dementia cases among those 65 and older is expected to double by the year 2050. As the baby boomer generation ages, many older adults will require dementia-related long-term services and supports (LTSS). This blueprint is the only national document to date that engages local, state, and national stakeholders to specifically focus on policy options at the intersection of dementia and LTSS. The authors undertook five major tasks that resulted in a prioritized list of policy options and research directions to help decisionmakers improve the dementia LTSS delivery system, workforce, and financing. These were to (1) identify weaknesses in the LTSS system that may be particularly severe for persons with dementia; (2) review national and state strategies addressing dementia or LTSS policy; (3) identify policy options from the perspective of a diverse group of stakeholders; (4) evaluate the policy options; and (5) prioritize policy options by impact and feasibility. Stakeholders identified 38 policy options. RAND researchers independently evaluated these options against prespecified criteria, settling on 25 priority options. These policy options can be summarized into five objectives for the dementia LTSS system: (1) increase public awareness of dementia to reduce stigma and promote earlier detection; (2) improve access to and use of LTSS; (3) promote high-quality, person- and caregiver-centered care; (4) provide better support for family caregivers of people with dementia; and (5) reduce the burden of dementia LTSS costs on individuals and families. This policy blueprint provides a foundation upon which to build consensus among a larger set of stakeholders to set priorities and the sequencing of policy recommendations. PMID:28083331

Barriers to Co-Designing Mobile Technology with Persons with Dementia and Their Carers.

PubMed

O'Connor, Siobhan; Bouamrane, Matt-Mouley; O'Donnell, Catherine A; Mair, Frances S

2016-01-01

Mobile applications can be used to help manage different aspects of long-term illnesses but many are not designed to meet the specific needs of people with dementia or their carers. This case study explores the barriers experienced when co-producing a memory and reminiscence app. A focus group and interviews were conducted with patient/carer dyads, an occupational therapist, project manager and software engineer involved in the design of the app. Data was analysed thematically using the framework approach. Several limitations such as poor technical knowledge and skills, negative attitudes and inaccurate perceptions of people with dementia slowed down or changed how the mobile app was developed. Compromises also had to be made over the final design of the app. More research to explore how mobile apps are co-designed with patients is needed.

In-home monitoring of persons with dementia: ethical guidelines for technology research and development.

PubMed

Mahoney, Diane F; Purtilo, Ruth B; Webbe, Frank M; Alwan, Majd; Bharucha, Ashok J; Adlam, Tim D; Jimison, Holly B; Turner, Beverly; Becker, S Ann

2007-07-01

Innovative technologies are rapidly emerging that offer caregivers the support and means to assist older adults with cognitive impairment to continue living "at home." Technology research and development efforts applied to older adults with dementia invoke special grant review and institutional review board concerns, to ensure not only safe but also ethically appropriate interventions. Evidence is emerging, however, that tensions are growing between innovators and reviewers. Reviewers with antitechnology biases are in a position to stifle needed innovation. Technology developers who fail to understand the clinical and caregiving aspects of dementia may design applications that are not in alignment with users' capabilities. To bridge this divide, we offer an analysis of the ethical issues surrounding home monitoring, a model framework, and ethical guidelines for technology research and development for persons with Alzheimer's disease and their caregivers.

The newly revised interview for deteriorations in daily living activities in dementia (R-IDDD2): distinguishing initiative from performance at assessment.

PubMed

Giebel, Clarissa M; Challis, David; Montaldi, Daniela

2017-03-01

Minimal evidence exists on the detailed deficits in complex instrumental activities of daily living (IADLs) in mild dementia. The aim of this study was twofold, to validate a revised questionnaire focusing measuring the initiative and performance of IADLs in mild dementia and to explore the relationship between individual IADLs and patient and carer well-being. A total of 183 carers of people with mild dementia completed a further modified Revised Interview for Deterioration in Daily Living Activities 2 (R-IDDD2), which comprised new activities such as computer use, as well as sub-activities on the performance scale. Carers also completed questionnaires assessing patient quality of life (QoL-AD), carer quality of life (AC-QoL), and burden (GHQ-12). Persons with dementia were significantly poorer initiating than performing cleaning, doing repair work, and preparing a hot or cold meal, whereas being poorer at performing dressing and following current affairs. Using the computer, preparing a hot meal, finance, and medication management were most impaired, whereas more basic activities of dressing, washing oneself, brushing hair or teeth, and preparing a hot drink were most preserved. Poor initiative and performance on nearly all activities were significantly related to reduced carer and patient well-being. The R-IDDD2 offers a platform to comprehensively assess everyday functioning. Deteriorations in initiative and performance need to be targeted separately in interventions, as the former requires effective triggering and the latter structured training and support. Most activities were significantly associated with well-being, particularly patient quality of life so that improving any activity should improve well-being.

A Systematic Review of the Economic Evidence for Home Support Interventions in Dementia.

PubMed

Clarkson, Paul; Davies, Linda; Jasper, Rowan; Loynes, Niklas; Challis, David

2017-09-01

Recent evidence signals the need for effective forms of home support to people with dementia and their carers. The cost-effectiveness evidence of different approaches to support is scant. To appraise economic evidence on the cost-effectiveness of home support interventions for dementia to inform future evaluation. A systematic literature review of full and partial economic evaluations was performed using the British National Health Service Economic Evaluation Database supplemented by additional references. Study characteristics and findings, including incremental cost-effectiveness ratios, when available, were summarized narratively. Study quality was appraised using the National Health Service Economic Evaluation Database critical appraisal criteria and independent ratings, agreed by two reviewers. Studies were located on a permutation matrix describing their mix of incremental costs/effects to aid decision making. Of the 151 articles retrieved, 14 studies met the inclusion criteria: 8 concerning support to people with dementia and 6 to carers. Five studies were incremental cost-utility analyses, seven were cost-effectiveness analyses, and two were cost consequences analyses. Five studies expressed incremental cost-effectiveness ratios as cost per quality-adjusted life-year (£6,696-£207,942 per quality-adjusted life-year). In four studies, interventions were dominant over usual care. Two interventions were more costly but more beneficial and were favorable against current acceptability thresholds. Occupational therapy, home-based exercise, and a carers' coping intervention emerged as cost-effective approaches for which there was better evidence. These interventions used environmental modifications, behavior management, physical activity, and emotional support as active components. More robust evidence is needed to judge the value of these and other interventions across the dementia care pathway. Copyright © 2017 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

Effect of animal-assisted interventions on depression, agitation and quality of life in nursing home residents suffering from cognitive impairment or dementia: a cluster randomized controlled trial.

PubMed

Olsen, Christine; Pedersen, Ingeborg; Bergland, Astrid; Enders-Slegers, Marie-José; Patil, Grete; Ihlebaek, Camilla

2016-12-01

The prevalence of neuropsychiatric symptoms in cognitively impaired nursing home residents is known to be very high, with depression and agitation being the most common symptoms. The possible effects of a 12-week intervention with animal-assisted activities (AAA) in nursing homes were studied. The primary outcomes related to depression, agitation and quality of life (QoL). A prospective, cluster randomized multicentre trial with a follow-up measurement 3 months after end of intervention was used. Inclusion criteria were men and women aged 65 years or older, with a diagnosis of dementia or having a cognitive deficit. Ten nursing homes were randomized to either AAA with a dog or a control group with treatment as usual. In total, 58 participants were recruited: 28 in the intervention group and 30 in the control group. The intervention consisted of a 30-min session with AAA twice weekly for 12 weeks in groups of three to six participants, led by a qualified dog handler. Norwegian versions of the Cornell Scale for Depression, the Brief Agitation Rating Scale and the Quality of Life in Late-stage Dementia scale were used. A significant effect on depression and QoL was found for participants with severe dementia at follow-up. For QoL, a significant effect of AAA was also found immediately after the intervention. No effects on agitation were found. Animal-assisted activities may have a positive effect on symptoms of depression and QoL in older people with dementia, especially those in a late stage. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

How do persons with dementia participate in decision making related to health and daily care? A multi-case study

PubMed Central

2012-01-01

Background Many countries have passed laws giving patients the right to participate in decisions about health care. People with dementia cannot be assumed to be incapable of making decisions on their diagnosis alone as they may have retained cognitive abilities. The purpose of this study was to gain a better understanding of how persons with dementia participated in making decisions about health care and how their family carers and professional caregivers influenced decision making. Methods This Norwegian study had a qualitative multi-case design. The triad in each of the ten cases consisted of the person with dementia, the family carer and the professional caregiver, in all 30 participants. Inclusion criteria for the persons with dementia were: (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2, moderate dementia; (3) able to communicate verbally. The family carers and professional caregivers were then asked to participate. A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day centre. How the professional caregivers facilitated decision making was the focus of the observations that varied in length from 30 to 90 minutes. The data were analyzed using framework analysis combined with a hermeneutical interpretive approach. Results Professional caregivers based their assessment of mental competence on experience and not on standardized tests. Persons with dementia demonstrated variability in how they participated in decision making. Pseudo-autonomous decision making and delegating decision making were new categories that emerged. Autonomous decision making did occur but shared decision making was the most typical pattern. Reduced mental capacity, lack of available choices or not being given the opportunity to participate led to non-involvement. Not all decisions were based on logic; personal values and relationships were also considered. Conclusions Persons with moderate dementia demonstrated variability in how they participated in decision making. Optimal involvement was facilitated by positioning them as capable of influencing decisions, assessing decision-specific competence, clarifying values and understanding the significance of relationships and context. PMID:22870952

'More of a leg to stand on': views and usage of the Mental Capacity Act 2005 among staff of local Alzheimer's Society and carer organisations.

PubMed

Manthorpe, Jill; Samsi, Kritika; Rapaport, Joan

2012-01-01

The Mental Capacity Act (MCA) 2005 was implemented in 2007 in England and Wales. It offers new opportunities for people to plan for any future loss of capacity and provides a framework for decision-making on behalf of people lacking capacity. This article explores the challenges staff in local voluntary organisations focusing on dementia and carers face when they offer information and advice connected to possible loss of decision-making capacity to people with dementia and carers. A set of 17 qualitative interviews were undertaken with a purposively sampled voluntary sector staff in London in 2008-09. Framework analysis was used to delineate themes in the transcripts and identified themes were included in the iteratively developed coding framework. Interviews revealed that voluntary sector staff generally perceived the Act as largely benefiting people with dementia in the exercise of their rights. They also thought that carers would benefit from the Act's provisions, whilst their own involvement in advice, information-giving and referral to other sources of expertise in relation to the MCA differed according to their role and confidence. Voluntary sector staff's capability and interest in using the MCA vary; there should be no presumption of detailed knowledge, and resources relevant to the MCA might be need to be coordinated more effectively by this sector. Ongoing training, local coordination and auditing seem warranted. These could encompass the new safeguarding provisions of the MCA which may need to be highlighted as part of the welcome extension of rights conferred by the MCA.

Application of the European quality indicators for psychosocial dementia care in long-term care facilities in the Asia-Pacific region: a pilot study.

PubMed

Jeon, Yun-Hee; Chien, Wai Tong; Ha, Ju-Young; Ibrahim, Rahimah; Kirley, Belinda; Tan, Lay Ling; Thaipisuttikul, Papan; Vasse, Emmelyne; Vernooij-Dassen, Myrra; Wang, Huali; Youn, Jong-Chul; Brodaty, Henry

2017-07-17

An Asia-Pacific regional collaboration group conducted its first multi-country research project to determine whether or not European quality indicators (QIs) for psychosocial care in dementia could be implemented as a valid tool in residential aged care across seven Asia-Pacific sites (Australia, Hong Kong Special Administrative Region, Mainland China, Malaysia, Singapore, South Korea, and Thailand). Following the European QI protocol, auditing and data extraction of medical records of consenting residents with dementia were conducted by trained auditors with relevant health care backgrounds. Detailed field notes by the auditors were also obtained to describe the characteristics of the participating care facilities, as well as key issues and challenges encountered, for each of the 12 QIs. Sixteen residential care facilities in the seven Asia-Pacific sites participated in this study. Data from 275 residents' records revealed each of the 12 Qis' endorsement varied widely within and between the study sites (0%-100%). Quality of the medical records, family and cultural differences, definitions and scoring of certain indicators, and time-consuming nature of the QI administration were main concerns for implementation. Several items in the European QIs in the current format were deemed problematic when used to measure the quality of psychosocial care in the residential aged care settings in participating Asia-Pacific countries. We propose refinements of the European QIs for the Asian-Pacific context, taking into account multiple factors identified in this study. Our findings provide crucial insights for future research and implementation of psychosocial dementia care QIs in this region.

Alzheimer Café: an approach focused on Alzheimer's patients but with remarkable values on the quality of life of their caregivers.

PubMed

Merlo, Paola; Devita, Maria; Mandelli, Alessandra; Rusconi, Maria Luisa; Taddeucci, Raquel; Terzi, Alice; Arosio, Gianpiero; Bellati, Maria; Gavazzeni, Maura; Mondini, Sara

2017-10-11

Alzheimer's disease (AD) affects the global quality of life of persons who suffer from it and their caregivers, because of the behavioral and psychological consequences associated with the pathology and its caring. The Alzheimer Café (AC) is one example of approach aimed to help persons and caregivers deal with their disease. This is a pilot study focusing on the efficacy of AC in relieving caregivers' and persons' burdens due to dementia. The quality of life of both caregivers and persons who attended the AC was compared with the quality of life of those who did not. Basic and instrumental daily activities and neuropsychiatric functioning were assessed. Caregivers also answered to general well-being and caregiving burden questionnaires. The evaluation took place at the beginning of the intervention and after 1, 3, 6, 9 and 12 months. Caregivers who joined the AC with their persons with dementia showed to have significantly benefited in the daily care of persons with dementia, in terms of total well-being, vitality, and emotional burden. Although improvements were not observed in persons with dementia who attended the AC, significant benefits were reported by their caregivers, suggesting that the intervention may produce better management of social and economic problems and lead to better emotional support. The AC seems to help families of AD persons to better manage the disease, and also delay the institutionalization of these persons, which is certainly an ambitious goal for an incurable disorder such as Alzheimer's disease.

Improving person-centred care in nursing homes through dementia-care mapping: design of a cluster-randomised controlled trial

PubMed Central

2012-01-01

Background The effectiveness and efficiency of nursing-home dementia care are suboptimal: there are high rates of neuropsychiatric symptoms among the residents and work-related stress among the staff. Dementia-care mapping is a person-centred care method that may alleviate both the resident and the staff problems. The main objective of this study is to evaluate the effectiveness and cost-effectiveness of dementia-care mapping in nursing-home dementia care. Methods/Design The study is a cluster-randomised controlled trial, with nursing homes grouped in clusters. Studywise minimisation is the allocation method. Nursing homes in the intervention group will receive a dementia-care-mapping intervention, while the control group will receive usual care. The primary outcome measure is resident agitation, to be assessed with the Cohen-Mansfield Agitation Inventory. The secondary outcomes are resident neuropsychiatric symptoms, assessed with the Neuropsychiatric Inventory - Nursing Homes and quality of life, assessed with Qualidem and the EQ-5D. The staff outcomes are stress reactions, job satisfaction and job-stress-related absenteeism, and staff turnover rate, assessed with the Questionnaire about Experience and Assessment of Work, the General Health Questionnaire-12, and the Maastricht Job Satisfaction Scale for Health Care, respectively. We will collect the data from the questionnaires and electronic registration systems. We will employ linear mixed-effect models and cost-effectiveness analyses to evaluate the outcomes. We will use structural equation modelling in the secondary analysis to evaluate the plausibility of a theoretical model regarding the effectiveness of the dementia-care mapping intervention. We will set up process analyses, including focus groups with staff, to determine the relevant facilitators of and barriers to implementing dementia-care mapping broadly. Discussion A novelty of dementia-care mapping is that it offers an integral person-centred approach to dementia care in nursing homes. The major strengths of the study design are the large sample size, the cluster-randomisation, and the one-year follow-up. The generalisability of the implementation strategies may be questionable because the motivation for person-centred care in both the intervention and control nursing homes is above average. The results of this study may be useful in improving the quality of care and are relevant for policymakers. Trial registration The trial is registered in the Netherlands National Trial Register: NTR2314. PMID:22214264

Enhanced rehabilitation and care models for adults with dementia following hip fracture surgery.

PubMed

Smith, Toby O; Hameed, Yasir A; Cross, Jane L; Henderson, Catherine; Sahota, Opinder; Fox, Chris

2015-06-15

Hip fracture is a major fall-related injury which causes significant problems for individuals, their family and carers. Over 40% of people with hip fracture have dementia or cognitive impairment, and their outcomes after surgery are poorer than those without dementia. It is not clear which care and rehabilitation interventions achieve the best outcomes for these people. (a) To assess the effectiveness of models of care including enhanced rehabilitation strategies designed specifically for people with dementia following hip fracture surgery compared to usual care.(b) To assess the effectiveness for people with dementia of models of care including enhanced rehabilitation strategies which are designed for all older people, regardless of cognitive status, following hip fracture surgery compared to usual care. We searched ALOIS (www.medicine.ox.ac.uk/alois), the Cochrane Dementia and Cognitive Improvement Group Specialised Register, up to and including week 1 June 2014 using the terms hip OR fracture OR surgery OR operation OR femur OR femoral. We include randomised and quasi-randomised controlled clinical trials (RCTs) evaluating the effectiveness for people with dementia of any model of enhanced care and rehabilitation following hip fracture surgery compared to usual care. Two review authors working independently selected studies for inclusion and extracted data. We assessed the risk of bias of included studies. We synthesised data only if we considered studies sufficiently homogeneous in terms of participants, interventions and outcomes. We used the GRADE approach to rate the overall quality of evidence for each outcome. We included five trials with a total of 316 participants. Four trials evaluated models of enhanced interdisciplinary rehabilitation and care, two of these for inpatients only and two for inpatients and at home after discharge. All were compared with usual rehabilitation and care in the trial settings. The fifth trial compared outcomes of geriatrician-led care in hospital to conventional care led by the orthopaedic team. All papers analysed subgroups of people with dementia/cognitive impairment from larger RCTs of older people following hip fracture. Trial follow-up periods ranged from acute hospital discharge to 24 months post-discharge.We considered all of the studies to be at high risk of bias in more than one domain. As subgroups of larger studies, the analyses lacked power to detect differences between the intervention groups. Further, there were some important differences in the baseline characteristics of the participants in experimental and control groups. Using the GRADE approach, we downgraded the quality of the evidence for all outcomes to 'low' or 'very low'.No study assessed our primary outcome (cognitive function) nor other important dementia-related outcomes including behaviour and quality of life. The effect estimates for most comparisons were very imprecise, so it was not possible to draw firm conclusions from the data. There was low-quality evidence that enhanced care and rehabilitation in hospital led to lower rates of some complications and that enhanced care provided across hospital and home settings reduced the chance of being in institutional care at three months post-discharge (Odds Ratio (OR) 0.46, 95% confidence interval (CI) 0.22 to 0.95, 2 trials, n = 184), but this effect was more uncertain at 12 months (OR 0.90, 95% CI 0.40 to 2.03, 2 trials, n = 177). The effect of enhanced care and rehabilitation in hospital and at home on functional outcomes was very uncertain because the quality of evidence was very low from one small trial. Results on functional outcomes from other trials were inconclusive. The effect of geriatrician-led compared to orthopaedic-led management on the cumulative incidence of delirium was very uncertain (OR 0.73, 95% CI 0.22 to 2.38, 1 trial, n = 126, very low-quality evidence). There is currently insufficient evidence to draw conclusions about how effective the models of enhanced rehabilitation and care after hip fracture used in these trials are for people with dementia above active usual care. The current evidence base derives from a small number of studies with quality limitations. This should be addressed as a research priority to determine the optimal strategies to improve outcomes for this growing population of patients.

Is watching television a realistic leisure option for people with dementia?

PubMed

Gústafsdóttir, Margrét

2015-01-01

Watching television is a common leisure activity, not least among older people. However, watching television may become difficult when it is disturbed by symptoms of dementia. A total of 284 questionnaires were handed out to relatives of people with dementia in Iceland, in the Memory Clinic of the University Hospital and in specialized units for people with dementia (6 day-care units and 8 units within nursing homes). The response rate was just below 58%. Watching television was shown to play a less important role in the course of the daily life of people with dementia as soon as the symptoms of the disease became evident, and it increasingly became less relevant. So, this previous leisure activity left an ever-growing void of time to fill. However, watching television may provide an important social context for contact and togetherness during the progress of the disease, as watching television with someone close to them was important for the individuals with dementia. It is not a viable option for people with dementia to watch television on their own, but they may enjoy watching television while sharing this activity with a person close to them. This may even provide quality time.

Exploring the usability of a videophone mock-up for persons with dementia and their significant others.

PubMed

Boman, Inga-Lill; Lundberg, Stefan; Starkhammar, Sofia; Nygård, Louise

2014-04-16

Persons with dementia might have considerable difficulties in using an ordinary telephone. Being able to use the telephone can be very important in order to maintain their social network, getting stimulation and for reaching help when needed. Therefore, persons with dementia might need an easy-to-use videophone to prevent social isolation and to feel safe and independent. This study reports the evaluation of the usability of a touch-screen videophone mock-up for persons with dementia and their significant others. Four persons with dementia and their significant others tested the videophone mock-up at a living laboratory. In order to gain knowledge of the participants' with dementia ability to use their own computers and telephones, interviews and observations were conducted. Overall, the participants had a very positive attitude towards the videophone. The participants with dementia perceived that it was useful, enjoyable and easy to use, although they initially had difficulties in understanding how to handle some functions, thus indicating that the design needs to be further developed to be more intuitive. The findings suggest that the videophone has the potential to enable telephone calls without assistance and add quality in communication.

Napping in older people 'at risk' of dementia: relationships with depression, cognition, medical burden and sleep quality.

PubMed

Cross, Nathan; Terpening, Zoe; Rogers, Naomi L; Duffy, Shantel L; Hickie, Ian B; Lewis, Simon J G; Naismith, Sharon L

2015-10-01

Sleep disturbance is prevalent in older adults, particularly so in those at a greater risk of dementia. However, so far the clinical, medical and neuropsychological correlates of daytime sleep have not been examined. The aims of this study were to investigate the characteristics and effects of napping using actigraphy in older people, particularly in those 'at risk' of dementia. The study used actigraphy and sleep diaries to measure napping habits in 133 older adults 'at risk' of dementia (mean age = 65.5 years, SD = 8.4 years), who also underwent comprehensive medical, psychiatric and neuropsychological assessment. When defined by actigraphy, napping was present in 83.5% (111/133) of participants; however, duration and timing varied significantly among subjects. Nappers had significantly greater medical burden and body mass index, and higher rates of mild cognitive impairment. Longer and more frequent naps were associated with poorer cognitive functioning, as well as higher levels of depressive symptoms, while the timing of naps was associated with poorer nocturnal sleep quality (i.e. sleep latency and wake after sleep onset). This study highlights that in older adults 'at risk' of dementia, napping is associated with underlying neurobiological changes such as depression and cognition. Napping characteristics should be more routinely monitored in older individuals to elucidate their relationship with psychological and cognitive outcomes. © 2015 European Sleep Research Society.

Multimodal Cognitive Enhancement Therapy for Patients with Mild Cognitive Impairment and Mild Dementia: A Multi- Center, Randomized, Controlled, Double-Blind, Crossover Trial.

PubMed

Han, Ji Won; Lee, Hyeonggon; Hong, Jong Woo; Kim, Kayoung; Kim, Taehyun; Byun, Hye Jin; Ko, Ji Won; Youn, Jong Chul; Ryu, Seung-Ho; Lee, Nam-Jin; Pae, Chi-Un; Kim, Ki Woong

2017-01-01

We developed and evaluated the effect of Multimodal Cognitive Enhancement Therapy (MCET) consisting of cognitive training, cognitive stimulations, reality orientation, physical therapy, reminiscence therapy, and music therapy in combination in older people with mild cognitive impairment (MCI) or mild dementia. This study was a multi-center, double-blind, randomized, placebo-controlled, two-period cross-over study (two 8-week treatment phases separated by a 4-week wash-out period). Sixty-four participants with MCI or dementia whose Clinical Dementia Rating was 0.5 or 1 were randomized to the MCET group or the mock-therapy (placebo) group. Outcomes were measured at baseline, week 9, and week 21. Fifty-five patients completed the study. Mini-Mental State Examination (effect size = 0.47, p = 0.013) and Alzheimer's Disease Assessment Scale-Cognitive Subscale (effect size = 0.35, p = 0.045) scores were significantly improved in the MCET compared with mock-therapy group. Revised Memory and Behavior Problems Checklist frequency (effect size = 0.38, p = 0.046) and self-rated Quality of Life - Alzheimer's Disease (effect size = 0.39, p = 0.047) scores were significantly improved in the MCET compared with mock-therapy. MCET improved cognition, behavior, and quality of life in people with MCI or mild dementia more effectively than conventional cognitive enhancing activities did.

[Fitness to drive in dementia - theoretical framing and design of a recommendation for German general practice].

PubMed

Pentzek, Michael; Michel, Jacqueline Verena; Ufert, Marie; Vollmar, Horst Christian; Wilm, Stefan; Leve, Verena

2015-01-01

General practitioners (GPs) are among the first to be contacted by persons with dementia and their relatives. Fitness to drive in dementia is a subject of uncertainty and conflict for GPs. Development of recommendations for German general practice on managing fitness to drive in dementia. Specification of problem areas by using relevant parts of a metasynthesis of international qualitative dementia research with GPs; literature review on evidence regarding the pre-defined problem areas; deduction of a preliminary design for a recommendation in a multi-professional team. The difficulties include the assessment of fitness to drive in the office setting, concerns about damaging the patient-physician relationship by raising the issue of driving fitness, and uncertainties about the GP's own legal role. A diagnosis of dementia does not per se preclude driving. The majority of elderly people would accept discussing fitness to drive with their GP. In Germany, GPs are not obliged to assess fitness to drive, or to report unsafe drivers to the Licensing Agency, but under certain conditions they do have the right to report. Addressing the issue of driving and dementia early with the patient seems to be a prerequisite for a resource-oriented and patient-centred management. The distinction between medical, ethical-communicative, and legal aspects enabled us to break down this complex problem and thus provide the informative basis to draft tailored recommendations. In an ongoing project, this framework will be further developed and informed by the expertise of patients, family caregivers, and professionals from various fields. Copyright © 2015. Published by Elsevier GmbH.

Identifying fallacious arguments in a qualitative study of antipsychotic prescribing in dementia.

PubMed

Donyai, Parastou

2017-10-01

Dementia can result in cognitive, noncognitive and behavioural symptoms which are difficult to manage. Formal guidelines for the care and management of dementia in the UK state that antipsychotics should only be prescribed where fully justified. This is because inappropriate use, particularly problematic in care-home settings, can produce severe side effects including death. The aim of this study was to explore the use of fallacious arguments in professionals' deliberations about antipsychotic prescribing in dementia in care-home settings. Fallacious arguments have the potential to become unremarkable discourses that construct and validate practices which are counter to guidelines. This qualitative study involved interviews with 28 care-home managers and health professionals involved in caring for patients with dementia. Potentially fallacious arguments were identified using qualitative content analysis and a coding framework constructed from existing explanatory models of fallacious reasoning. Fallacious arguments were identified in a range of explanations and reasons that participants gave for in answer to questions about initiating, reducing doses of and stopping antipsychotics in dementia. The dominant fallacy was false dichotomy. Appeal to popularity, tradition, consequence, emotion, or fear, and the slippery slope argument was also identified. Fallacious arguments were often formulated to present convincing cases whereby prescribing antipsychotics or maintaining existing doses (versus not starting medication or reducing the dose, for example) appeared as the only acceptable decision but this is not always the case. The findings could help health professionals to recognise and mitigate the effect of logic-based errors in decisions about the prescribing of antipsychotics in dementia. © 2016 Royal Pharmaceutical Society.

'Once I had money in my pocket, I was every colour under the sun': using 'appearance biographies' to explore the meanings of appearance for people with dementia.

PubMed

Ward, Richard; Campbell, Sarah; Keady, John

2014-08-01

Appearance and the work invested in it by and for people with dementia are a neglected issue within dementia studies. In policy and practice there exists an assumption that the role of supporting a person to manage their appearance is easily assumed by another within caring encounters, only to be subsumed within the daily task-oriented provision of care. This paper reports on interviews conducted as part of the Hair and Care project, which explored questions of appearance and the meanings it holds with people with dementia. The research used 'appearance biographies', a method which allows for a range of topics to be considered about appearance throughout the life course, acting as a conduit for reminiscence and life story work. The paper reports on the key themes and findings from these interviews, discussing them in the context of a wider debate on dementia, self-expression and agency. A key question posed by the authors is whether appearance and the work invested in it are legitimate considerations for dementia care policy and practice. And if so, how should we make sense of this work and what significance should we attach to it? In seeking to answer these questions the authors position the perspectives and experiences of people with dementia as central to their analysis. A narrative framework is suggested as a useful basis on which to understand the work of managing appearance over the life course. The implications for policy and practice are outlined. Copyright © 2014 Elsevier Inc. All rights reserved.

Neuropathological and transcriptomic characteristics of the aged brain

PubMed Central

Miller, Jeremy A; Guillozet-Bongaarts, Angela; Gibbons, Laura E; Postupna, Nadia; Renz, Anne; Beller, Allison E; Sunkin, Susan M; Ng, Lydia; Rose, Shannon E; Smith, Kimberly A; Szafer, Aaron; Barber, Chris; Bertagnolli, Darren; Bickley, Kristopher; Brouner, Krissy; Caldejon, Shiella; Chapin, Mike; Chua, Mindy L; Coleman, Natalie M; Cudaback, Eiron; Cuhaciyan, Christine; Dalley, Rachel A; Dee, Nick; Desta, Tsega; Dolbeare, Tim A; Dotson, Nadezhda I; Fisher, Michael; Gaudreault, Nathalie; Gee, Garrett; Gilbert, Terri L; Goldy, Jeff; Griffin, Fiona; Habel, Caroline; Haradon, Zeb; Hejazinia, Nika; Hellstern, Leanne L; Horvath, Steve; Howard, Kim; Howard, Robert; Johal, Justin; Jorstad, Nikolas L; Josephsen, Samuel R; Kuan, Chihchau L; Lai, Florence; Lee, Eric; Lee, Felix; Lemon, Tracy; Li, Xianwu; Marshall, Desiree A; Melchor, Jose; Mukherjee, Shubhabrata; Nyhus, Julie; Pendergraft, Julie; Potekhina, Lydia; Rha, Elizabeth Y; Rice, Samantha; Rosen, David; Sapru, Abharika; Schantz, Aimee; Shen, Elaine; Sherfield, Emily; Shi, Shu; Sodt, Andy J; Thatra, Nivretta; Tieu, Michael; Wilson, Angela M; Montine, Thomas J; Larson, Eric B; Bernard, Amy; Crane, Paul K; Ellenbogen, Richard G

2017-01-01

As more people live longer, age-related neurodegenerative diseases are an increasingly important societal health issue. Treatments targeting specific pathologies such as amyloid beta in Alzheimer’s disease (AD) have not led to effective treatments, and there is increasing evidence of a disconnect between traditional pathology and cognitive abilities with advancing age, indicative of individual variation in resilience to pathology. Here, we generated a comprehensive neuropathological, molecular, and transcriptomic characterization of hippocampus and two regions cortex in 107 aged donors (median = 90) from the Adult Changes in Thought (ACT) study as a freely-available resource (http://aging.brain-map.org/). We confirm established associations between AD pathology and dementia, albeit with increased, presumably aging-related variability, and identify sets of co-expressed genes correlated with pathological tau and inflammation markers. Finally, we demonstrate a relationship between dementia and RNA quality, and find common gene signatures, highlighting the importance of properly controlling for RNA quality when studying dementia. PMID:29120328

Animal-Assisted Intervention and Dementia: A Systematic Review.

PubMed

Yakimicki, Michelle L; Edwards, Nancy E; Richards, Elizabeth; Beck, Alan M

2018-02-01

This review discusses the relationship between animal-assisted interventions (AAI) and behavioral and psychological symptoms of dementia (BPSD). A systematic search was conducted within CINAHL, Web of Science CAB Abstracts, PubMed, Abstracts in Social Gerontology, Google Scholar, and PsycINFO for primary research articles. A total of 32 studies were included in the final review. Variation was noted in study designs and in study setting. Twenty-seven of 32 studies used dogs as the intervention. Agitation/aggression showed a significant decrease in nine of 15 studies. Eleven of 12 studies demonstrated increased social interaction with AAI. Mood had mixed results in nine studies. Quality of life was increased in three of four studies. Resident activity and nutritional intake were each increased in two studies. Animal assisted activities/interventions showed a strong positive effect on social behaviors, physical activity, and dietary intake in dementia patients and a positive effect on agitation/aggression and quality of life.

NIA-AA Research Framework: Toward a biological definition of Alzheimer's disease.

PubMed

Jack, Clifford R; Bennett, David A; Blennow, Kaj; Carrillo, Maria C; Dunn, Billy; Haeberlein, Samantha Budd; Holtzman, David M; Jagust, William; Jessen, Frank; Karlawish, Jason; Liu, Enchi; Molinuevo, Jose Luis; Montine, Thomas; Phelps, Creighton; Rankin, Katherine P; Rowe, Christopher C; Scheltens, Philip; Siemers, Eric; Snyder, Heather M; Sperling, Reisa

2018-04-01

In 2011, the National Institute on Aging and Alzheimer's Association created separate diagnostic recommendations for the preclinical, mild cognitive impairment, and dementia stages of Alzheimer's disease. Scientific progress in the interim led to an initiative by the National Institute on Aging and Alzheimer's Association to update and unify the 2011 guidelines. This unifying update is labeled a "research framework" because its intended use is for observational and interventional research, not routine clinical care. In the National Institute on Aging and Alzheimer's Association Research Framework, Alzheimer's disease (AD) is defined by its underlying pathologic processes that can be documented by postmortem examination or in vivo by biomarkers. The diagnosis is not based on the clinical consequences of the disease (i.e., symptoms/signs) in this research framework, which shifts the definition of AD in living people from a syndromal to a biological construct. The research framework focuses on the diagnosis of AD with biomarkers in living persons. Biomarkers are grouped into those of β amyloid deposition, pathologic tau, and neurodegeneration [AT(N)]. This ATN classification system groups different biomarkers (imaging and biofluids) by the pathologic process each measures. The AT(N) system is flexible in that new biomarkers can be added to the three existing AT(N) groups, and new biomarker groups beyond AT(N) can be added when they become available. We focus on AD as a continuum, and cognitive staging may be accomplished using continuous measures. However, we also outline two different categorical cognitive schemes for staging the severity of cognitive impairment: a scheme using three traditional syndromal categories and a six-stage numeric scheme. It is important to stress that this framework seeks to create a common language with which investigators can generate and test hypotheses about the interactions among different pathologic processes (denoted by biomarkers) and cognitive symptoms. We appreciate the concern that this biomarker-based research framework has the potential to be misused. Therefore, we emphasize, first, it is premature and inappropriate to use this research framework in general medical practice. Second, this research framework should not be used to restrict alternative approaches to hypothesis testing that do not use biomarkers. There will be situations where biomarkers are not available or requiring them would be counterproductive to the specific research goals (discussed in more detail later in the document). Thus, biomarker-based research should not be considered a template for all research into age-related cognitive impairment and dementia; rather, it should be applied when it is fit for the purpose of the specific research goals of a study. Importantly, this framework should be examined in diverse populations. Although it is possible that β-amyloid plaques and neurofibrillary tau deposits are not causal in AD pathogenesis, it is these abnormal protein deposits that define AD as a unique neurodegenerative disease among different disorders that can lead to dementia. We envision that defining AD as a biological construct will enable a more accurate characterization and understanding of the sequence of events that lead to cognitive impairment that is associated with AD, as well as the multifactorial etiology of dementia. This approach also will enable a more precise approach to interventional trials where specific pathways can be targeted in the disease process and in the appropriate people. Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.

Effects of viewing a preferred nature image and hearing preferred music on engagement, agitation, and mental status in persons with dementia

PubMed Central

Eggert, Julia; Vincent, Ellen; Parker, Veronica; Daily, Shaundra B; Pham, Hiep; Watson, Alison Turner; Summey, Hollie; Roy, Tania

2015-01-01

Background: The purpose of the described exploratory study was to test proactive strategies for enhancing engagement and cognitive ability while diminishing dementia-related disordered behaviors of those diagnosed with Alzheimer’s disease and other dementias. Study participants resided in an Memory Care unit of an assisted living community. Method: The researchers measured the effects of exposure to music and nature images on engagement using the Individualized Dementia Engagement and Activities Scale tool, on cognitive ability using the Montreal Cognitive Assessment, and on agitation using the Cohen-Mansfield Agitation Inventory. Result: The within-subject study design revealed that use of both music and nature images hold promise for reducing undesirable behaviors and improving engagement of residents. Conclusion: The authors suggest caregivers for those with Alzheimer’s disease and other dementias can effectively use nature images and music to improve engagement and reduce disordered behaviors, thus potentially enhancing quality of life for the care recipient as well as the caregiver while possibly reducing the costs of medications used to control dementia-related undesirable behaviors. PMID:26770801

Improving the care of older persons in Australian prisons using the Policy Delphi method.

PubMed

Patterson, Karen; Newman, Claire; Doona, Katherine

2016-09-01

There are currently no internationally recognised and approved processes relating to the care of older persons with dementia in prison. This research aimed to develop tools and procedures related to managing the care of, including the identification and assessment of, older persons with dementia who are imprisoned in New South Wales, Australia. A modified approach to the Policy Delphi method, using both surveys and facilitated discussion groups, enabled experts to come together to discuss improving the quality of care provision for older persons with dementia in prison and achieve research aims. © The Author(s) 2014.

Cognitive Impairment and Dementia in Patients with Parkinson Disease

PubMed Central

Leverenz, James B.; Quinn, Joseph F.; Zabetian, Cyrus; Zhang, Jing; Montine, Kathleen S.; Montine, Thomas J.

2009-01-01

Parkinson disease (PD) is an already prevalent neurodegenerative disease that is poised to at least double over the next 25 years. Although best known for its characteristic movement disorder, PD is now appreciated commonly to cause cognitive impairment, including dementia, and behavioral changes. Dementia in patients with PD is consequential and has been associated with reduced quality of life, shortened survival, and increased caregiver distress. Here we review clinical presentation and progression, pathological bases, identification of genetic risk factors, development of small molecule biomarkers, and emerging treatments for cognitive impairment in patients with PD. PMID:19754405

Substitute consent to data sharing: a way forward for international dementia research?

PubMed Central

Thorogood, Adrian; Deschênes St-Pierre, Constance; Knoppers, Bartha Maria

2017-01-01

Abstract A deluge of genetic and health-related data is being generated about patients with dementia. International sharing of these data accelerates dementia research. Seeking consent to data sharing is a challenge for dementia research where patients have lost or risk losing legal capacity. The laws of most countries enable substitute decision makers (SDMs) to consent on behalf of incapable adults to research participation. We compare regulatory frameworks governing capacity, research, and personal data protection across eight countries to determine when SDMs can consent to data sharing. In most countries, an SDM can consent to data sharing in the incapable adult's best interests. Best interests typically include consideration of the individual's previously expressed wishes, values and beliefs; well-being; and inclusion in decision making. Countries differ in how these considerations are balanced. A clear previous consent or refusal to share data typically binds the discretion of an SDM. Though generally permissive, National patchworks of laws and guidelines cause confusion. Clarity on the applicable law and processes to enhance ethical decision making are needed to facilitate substitute consent. Researchers can encourage patients to communicate their research preferences before a loss of capacity, and educate SDMs about their ethical and legal duties. The research community must also continue to promote the importance of data sharing in dementia. PMID:28852560

Technologies to Support Community-Dwelling Persons With Dementia: A Position Paper on Issues Regarding Development, Usability, Effectiveness and Cost-Effectiveness, Deployment, and Ethics.

PubMed

Meiland, Franka; Innes, Anthea; Mountain, Gail; Robinson, Louise; van der Roest, Henriëtte; García-Casal, J Antonio; Gove, Dianne; Thyrian, Jochen René; Evans, Shirley; Dröes, Rose-Marie; Kelly, Fiona; Kurz, Alexander; Casey, Dympna; Szcześniak, Dorota; Dening, Tom; Craven, Michael P; Span, Marijke; Felzmann, Heike; Tsolaki, Magda; Franco-Martin, Manuel

2017-01-16

With the expected increase in the numbers of persons with dementia, providing timely, adequate, and affordable care and support is challenging. Assistive and health technologies may be a valuable contribution in dementia care, but new challenges may emerge. The aim of our study was to review the state of the art of technologies for persons with dementia regarding issues on development, usability, effectiveness and cost-effectiveness, deployment, and ethics in 3 fields of application of technologies: (1) support with managing everyday life, (2) support with participating in pleasurable and meaningful activities, and (3) support with dementia health and social care provision. The study also aimed to identify gaps in the evidence and challenges for future research. Reviews of literature and expert opinions were used in our study. Literature searches were conducted on usability, effectiveness and cost-effectiveness, and ethics using PubMed, Embase, CINAHL, and PsycINFO databases with no time limit. Selection criteria in our selected technology fields were reviews in English for community-dwelling persons with dementia. Regarding deployment issues, searches were done in Health Technology Assessment databases. According to our results, persons with dementia want to be included in the development of technologies; there is little research on the usability of assistive technologies; various benefits are reported but are mainly based on low-quality studies; barriers to deployment of technologies in dementia care were identified, and ethical issues were raised by researchers but often not studied. Many challenges remain such as including the target group more often in development, performing more high-quality studies on usability and effectiveness and cost-effectiveness, creating and having access to high-quality datasets on existing technologies to enable adequate deployment of technologies in dementia care, and ensuring that ethical issues are considered an important topic for researchers to include in their evaluation of assistive technologies. Based on these findings, various actions are recommended for development, usability, effectiveness and cost-effectiveness, deployment, and ethics of assistive and health technologies across Europe. These include avoiding replication of technology development that is unhelpful or ineffective and focusing on how technologies succeed in addressing individual needs of persons with dementia. Furthermore, it is suggested to include these recommendations in national and international calls for funding and assistive technology research programs. Finally, practitioners, policy makers, care insurers, and care providers should work together with technology enterprises and researchers to prepare strategies for the implementation of assistive technologies in different care settings. This may help future generations of persons with dementia to utilize available and affordable technologies and, ultimately, to benefit from them. ©Franka Meiland, Anthea Innes, Gail Mountain, Louise Robinson, Henriëtte van der Roest, J Antonio García-Casal, Dianne Gove, Jochen René Thyrian, Shirley Evans, Rose-Marie Dröes, Fiona Kelly, Alexander Kurz, Dympna Casey, Dorota Szcześniak, Tom Dening, Michael P Craven, Marijke Span, Heike Felzmann, Magda Tsolaki, Manuel Franco-Martin. Originally published in JMIR Rehabilitation and Assistive Technology (http://rehab.jmir.org), 16.01.2017.

Managing behavioural symptoms of dementia: effectiveness of staff education and peer support.

PubMed

Visser, S M; McCabe, M P; Hudgson, C; Buchanan, G; Davison, T E; George, K

2008-01-01

This study was designed to investigate the impact of staff education on the behaviour and quality of life of residents with dementia and on staff members' attitudes about working with people with dementia and level of burnout. Staff from three aged care facilities participated in the study (n=52). These facilities were randomly assigned to one of two intervention groups or a control group. Staff assigned to the intervention groups received an eight-week behaviourally-based programme. Staff from one aged care facility also participated in a peer support group designed to reinforce educational material and facilitate positive changes among staff members. Behavioural symptoms displayed by residents (n=76) in each of the facilities were also assessed. Assessments were conducted at pre-intervention, post-intervention, three- and six-month follow-up. The results of this study indicated that education or peer support was not associated with an improvement in resident behaviour or quality of life. Education or peer support also did not impact on staff members' level of burnout. There was, however, a change in staff members' attitudes about working with people with dementia. Possible explanations for these findings and implication for further research are considered.

The effects of observation of walking in a living room environment, on physical, cognitive, and quality of life related outcomes in older adults with dementia: a study protocol of a randomized controlled trial.

PubMed

Douma, Johanna G; Volkers, Karin M; Vuijk, Jelle Pieter; Sonneveld, Marieke H; Goossens, Richard H M; Scherder, Erik J A

2015-03-18

The number of older adults with dementia is expected to increase. Dementia is not only characterized by a decline in cognition, also other functions, for example, physical functioning change. A possible means to decrease the decline in these functions, or even improve them, could be increasing the amount of physical activity. A feasible way hereto may be activation of the mirror neuron system through action observation. This method has already been shown beneficial for the performance of actions in, for example, stroke patients. The primary aim of this study is to examine the effect of observing videos of walking people on physical activity and physical performance, in older adults with dementia. Secondary, effects on cognition and quality of life related factors will be examined. A cluster randomized controlled trial is being performed, in which videos are shown to older adults with dementia (also additional eligibility criteria apply) in shared living rooms of residential care facilities. Due to the study design, living rooms instead of individual participants are randomly assigned to the experimental (videos of walking people) or control (videos of nature) condition, by means of drawing pieces of paper. The intervention has a duration of three months, and takes place on weekdays, during the day. There are four measurement occasions, in which physical activity, physical functioning, activities of daily living, cognition, the rest-activity rhythm, quality of life, and depression are assessed. Tests for participants are administered by a test administrator who is blind to the group the participant is in. This study examines the effect of the observation of walking people on multiple daily life functions and quality of life related factors in older adults with dementia. A strength of this study is that the intervention does not require much time and attention from caregivers or researchers. A challenge of the study is therefore to get to know for how long residents watch the videos. However, the design implies a high feasibility of the study, as well as a high applicability of the intervention into daily care. NTR4708. Date of registration: 31 July 2014.

Promoting collaborative dementia care via online interprofessional education.

PubMed

Cartwright, Jade; Franklin, Diane; Forman, Dawn; Freegard, Heather

2015-06-01

This study aimed to develop, implement and evaluate an online interprofessional education (IPE) dementia case study for health science students. The IPE initiative aimed to develop collaborative interprofessional capabilities and client-centred mindsets that underpin high-quality dementia care. A mixed methods research design was used to assess students' values, attitudes and learning outcomes using an interprofessional socialization and valuing scale (ISVS) completed pre and post the online case study and via thematic analysis of free text responses. Students' ISVS scores improved significantly following online participation, and the qualitative results support a shift towards interprofessional collaboration and client-centred care. This online IPE case study was successful in developing the collaborative mindsets and interprofessional capabilities required by a future workforce to meet the complex, client-centred needs of people living with dementia. © 2013 ACOTA.

Conceptualisation of self-management intervention for people with early stage dementia.

PubMed

Martin, Faith; Turner, Andrew; Wallace, Louise M; Bradbury, Nicola

2013-06-01

Dementia is a major challenge for health and social care services. People living with dementia in the earlier stages experience a "care-gap". Although they may address this gap in care, self-management interventions have not been provided to people with dementia. It is unclear how to conceptualise self-management for this group and few published papers address intervention design. Initial focusing work used a logic mapping approach, interviews with key stakeholders, including people with dementia and their family members. An initial set of self-management targets were identified for potential intervention. Self-management for people living with dementia was conceptualised as covering five targets: (1) relationship with family, (2) maintaining an active lifestyle, (3) psychological wellbeing, (4) techniques to cope with memory changes, and (5) information about dementia. These targets were used to focus literature reviewing to explore an evidence base for the conceptualisation. We discuss the utility of the Corbin and Strauss (Unending work and care: managing chronic illness at home. Jossey-Bass, Oxford, 1988) model of self-management, specifically that self-management for people living with dementia should be conceptualised as emphasising the importance of "everyday life work" (targets 1 and 2) and "biographical work" (target 3), with inclusion of but less emphasis on specific "illness work" (targets 4, 5). We argue that self-management is possible for people with dementia, with a strengths focus and emphasis on quality of life, which can be achieved despite cognitive impairments. Further development and testing of such interventions is required to provide much needed support for people in early stages of dementia.

Engagement of a Person with Dementia Scale: Establishing Content Validity and Psychometric Properties.

PubMed

Jones, Cindy; Sung, Billy; Moyle, Wendy

2018-05-17

To develop and psychometrically test the Engagement of a Person with Dementia Scale. It is important to study engagement in people with dementia when exploring the effectiveness of psychosocial interventions that can promote meaningful activity, stimulation and wellbeing, through an increase in positive emotions and an improvement in quality of life. The Engagement of a Person with Dementia Scale was developed based on current literature and previous research work on a video coding tool to ascertain the effect of psychosocial interventions on engagement in people with dementia. Using the Delphi technique, the content validity of the scale was evaluated by 15 dementia experts and formal/informal dementia carers. Psychometric properties of the scale were evaluated using 131 videos of people with dementia presented with PARO - a therapeutic, interactive, robotic seal - in long-term aged care facilities. A 10-item scale was established following the rewording, combining and elimination of prospective items, with revisions made to the instructions for using and scoring the scale. An overall consensus with agreement for the scale was established among the panel of experts. The scale demonstrated robust internal consistency, inter-rater and test-retest reliability and convergent and discriminant validity. This study successfully developed the Engagement of a Person with Dementia Scale, with established content validity and psychometric properties. The scale assesses the behavioural and emotional expressions and responses of engagement by people with dementia when partaking in a psychosocial activity in five areas: affective, visual, verbal, behavioural and social engagement. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Protein Quality Control and the Amyotrophic Lateral Sclerosis/Frontotemporal Dementia Continuum

PubMed Central

Shahheydari, Hamideh; Ragagnin, Audrey; Walker, Adam K.; Toth, Reka P.; Vidal, Marta; Jagaraj, Cyril J.; Perri, Emma R.; Konopka, Anna; Sultana, Jessica M.; Atkin, Julie D.

2017-01-01

Protein homeostasis, or proteostasis, has an important regulatory role in cellular function. Protein quality control mechanisms, including protein folding and protein degradation processes, have a crucial function in post-mitotic neurons. Cellular protein quality control relies on multiple strategies, including molecular chaperones, autophagy, the ubiquitin proteasome system, endoplasmic reticulum (ER)-associated degradation (ERAD) and the formation of stress granules (SGs), to regulate proteostasis. Neurodegenerative diseases are characterized by the presence of misfolded protein aggregates, implying that protein quality control mechanisms are dysfunctional in these conditions. Amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) are neurodegenerative diseases that are now recognized to overlap clinically and pathologically, forming a continuous disease spectrum. In this review article, we detail the evidence for dysregulation of protein quality control mechanisms across the whole ALS-FTD continuum, by discussing the major proteins implicated in ALS and/or FTD. We also discuss possible ways in which protein quality mechanisms could be targeted therapeutically in these disorders and highlight promising protein quality control-based therapeutics for clinical trials. PMID:28539871

The effects of sleep quality, physical activity, and environmental quality on the risk of falls in dementia.

PubMed

Eshkoor, Sima Ataollahi; Hamid, Tengku Aizan; Nudin, Siti Sa'adiah Hassan; Mun, Chan Yoke

2013-06-01

This study aimed to identify the effects of sleep quality, physical activity, environmental quality, age, ethnicity, sex differences, marital status, and educational level on the risk of falls in the elderly individuals with dementia. Data were derived from a group of 1210 Malaysian elderly individuals who were noninstitutionalized and demented. The multiple logistic regression model was applied to estimate the risk of falls in respondents. Approximately the prevalence of falls was 17% among the individuals. The results of multiple logistic regression analysis revealed that age (odds ratio [OR] = 1.03), ethnicity (OR = 1.76), sleep quality (OR = 1.46), and environmental quality (OR = 0.62) significantly affected the risk of falls in individuals (P < .05). Furthermore, sex differences, marital status, educational level, and physical activity were not significant predictors of falls in samples (P > .05). It was found that age, ethnic non-Malay, and sleep disruption increased the risk of falls in respondents, but high environmental quality reduced the risk of falls.

The provision of accredited higher education on dementia in six European countries: An exploratory study.

PubMed

Hvalič-Touzery, Simona; Skela-Savič, Brigita; Macrae, Rhoda; Jack-Waugh, Anna; Tolson, Debbie; Hellström, Amanda; de Abreu, Wilson; Pesjak, Katja

2018-01-01

The World Health Organization has identified developing the knowledge and skills of healthcare professionals who are involved in dementia care as a priority. Most healthcare professionals lack the necessary knowledge, skills and understanding to provide high quality dementia care. While dementia education amongst most UK university health and social care programmes is inconsistent, we know little about the provision of dementia education in European universities. To examine the provision of accredited higher education on dementia in European countries, to illustrate that it is highly variable despite universities being the major provider of education for healthcare professionals internationally. An exploratory research design was used. The providers of higher education undergraduate and postgraduate programmes in the Czech Republic, Portugal, Scotland, Slovenia, Spain, Sweden. Higher Education Institutions who provide undergraduate and postgraduate education in the fields of nursing, medicine, psychology, social work, physiotherapy, occupational therapy, and gerontology in six European countries. The data was collected using a structured questionnaire. Researchers in each country conducted an internet-based search using the websites of Higher Education Institutions to identify existing accredited dementia education. These searches revealed a lack of dementia education in undergraduate health and social care study programmes. Three of the six countries offered postgraduate study programmes on dementia. There was a significant variation amongst the countries in relation to the provision of dementia education at undergraduate, postgraduate and doctoral levels. Dementia is a global challenge and educating and upskilling the workforce is a policy imperative. To deliver the best dementia care, investment in interprofessional evidence-based education is required if we are to respond effectively and compassionately to the needs of people living with dementia and their families. Higher Education Institutions have an important role to play in equipping health and social care professionals with the knowledge, skills and understanding to respond to this imperative. Copyright © 2017 Elsevier Ltd. All rights reserved.

A non-pharmacologic approach to address challenging behaviors of Veterans with dementia: description of the tailored activity program-VA randomized trial.

PubMed

Gitlin, Laura N; Mann, William C; Vogel, W Bruce; Arthur, Paul B

2013-09-23

Behavioral symptoms accompanying dementia are associated with increased health care costs, reduced quality of life and daily functioning, heightened family caregiver burden, and nursing home placement. Standard care typically involves pharmacologic agents, but these are, at best, modestly effective, carry serious risks, including mortality, and do not address behavioral symptoms families consider most distressful and which may prompt nursing home placement. Given dementia's devastating effects and the absence of an imminent cure, the Veterans Administration has supported the development and testing of new approaches to manage challenging behaviors at home. The Tailored Activity Program - Veterans Administration is a Phase III efficacy trial designed to reduce behavioral symptoms in Veterans with dementia living with their caregivers in the community. The study uses a randomized two-group parallel design with 160 diverse Veterans and caregivers. The experimental group receives a transformative patient-centric intervention designed to reduce the burden of behavioral symptoms in Veterans with dementia. An occupational therapist conducts an assessment to identify a Veteran's preserved capabilities, deficit areas, previous roles, habits, and interests to develop activities tailored to the Veteran. Family caregivers are then trained to incorporate activities into daily care. The attention-control group receives bi-monthly telephone contact where education on topics relevant to dementia is provided to caregivers. Key outcomes include reduced frequency and severity of behavioral symptoms using the 12-item Neuropsychiatric Inventory (primary endpoint), reduced caregiver burden, enhanced skill acquisition, efficacy using activities, and time spent providing care at 4 months; and long-term effects (8 months) on the Veteran's quality of life and frequency and severity of behavioral symptoms, and caregiver use of activities. The programs' impact of Veterans Administration cost is also examined. Study precision will be increased through face-to-face research team trainings with procedural manuals and review of audio-taped interviews and intervention sessions. The Tailored Activity Program - Veterans Administration is designed to improve the quality of life of Veterans with dementia and lessen the burden of care on caregivers. Activities are tailored to reflect the Veteran's preserved capabilities and interests to enhance active engagement, while not taxing areas of cognition that are most impaired.

Caregiver- and Patient-Directed Interventions for Dementia

PubMed Central

2008-01-01

Executive Summary In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy. After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report. Please visit the Medical Advisory Secretariat Web site, http://www.health.gov.on.ca/english/providers/program/mas/mas_about.html, to review these titles within the Aging in the Community series. Aging in the Community: Summary of Evidence-Based Analyses Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR) This report features the evidence-based analysis on caregiver- and patient-directed interventions for dementia and is broken down into 4 sections: Introduction Caregiver-Directed Interventions for Dementia Patient-Directed Interventions for Dementia Economic Analysis of Caregiver- and Patient-Directed Interventions for Dementia Caregiver-Directed Interventions for Dementia Objective To identify interventions that may be effective in supporting the well-being of unpaid caregivers of seniors with dementia living in the community. Clinical Need: Target Population and Condition Dementia is a progressive and largely irreversible syndrome that is characterized by a loss of cognitive function severe enough to impact social or occupational functioning. The components of cognitive function affected include memory and learning, attention, concentration and orientation, problem-solving, calculation, language, and geographic orientation. Dementia was identified as one of the key predictors in a senior’s transition from independent community living to admission to a long-term care (LTC) home, in that approximately 90% of individuals diagnosed with dementia will be institutionalized before death. In addition, cognitive decline linked to dementia is one of the most commonly cited reasons for institutionalization. Prevalence estimates of dementia in the Ontario population have largely been extrapolated from the Canadian Study of Health and Aging conducted in 1991. Based on these estimates, it is projected that there will be approximately 165,000 dementia cases in Ontario in the year 2008, and by 2010 the number of cases will increase by nearly 17% over 2005 levels. By 2020 the number of cases is expected to increase by nearly 55%, due to a rise in the number of people in the age categories with the highest prevalence (85+). With the increase in the aging population, dementia will continue to have a significant economic impact on the Canadian health care system. In 1991, the total costs associated with dementia in Canada were $3.9 billion (Cdn) with $2.18 billion coming from LTC. Caregivers play a crucial role in the management of individuals with dementia because of the high level of dependency and morbidity associated with the condition. It has been documented that a greater demand is faced by dementia caregivers compared with caregivers of persons with other chronic diseases. The increased burden of caregiving contributes to a host of chronic health problems seen among many informal caregivers of persons with dementia. Much of this burden results from managing the behavioural and psychological symptoms of dementia (BPSD), which have been established as a predictor of institutionalization for elderly patients with dementia. It is recognized that for some patients with dementia, an LTC facility can provide the most appropriate care; however, many patients move into LTC unnecessarily. For individuals with dementia to remain in the community longer, caregivers require many types of formal and informal support services to alleviate the stress of caregiving. These include both respite care and psychosocial interventions. Psychosocial interventions encompass a broad range of interventions such as psychoeducational interventions, counseling, supportive therapy, and behavioural interventions. Assuming that 50% of persons with dementia live in the community, a conservative estimate of the number of informal caregivers in Ontario is 82,500. Accounting for the fact that 29% of people with dementia live alone, this leaves a remaining estimate of 58,575 Ontarians providing care for a person with dementia with whom they reside. Description of Interventions The 2 main categories of caregiver-directed interventions examined in this review are respite care and psychosocial interventions. Respite care is defined as a break or relief for the caregiver. In most cases, respite is provided in the home, through day programs, or at institutions (usually 30 days or less). Depending on a caregiver’s needs, respite services will vary in delivery and duration. Respite care is carried out by a variety of individuals, including paid staff, volunteers, family, or friends. Psychosocial interventions encompass a broad range of interventions and have been classified in various ways in the literature. This review will examine educational, behavioural, dementia-specific, supportive, and coping interventions. The analysis focuses on behavioural interventions, that is, those designed to help the caregiver manage BPSD. As described earlier, BPSD are one of the most challenging aspects of caring for a senior with dementia, causing an increase in caregiver burden. The analysis also examines multicomponent interventions, which include at least 2 of the above-mentioned interventions. Methods of Evidence-Based Analysis A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials (RCTs) that examined the effectiveness of interventions for caregivers of dementia patients. Questions Section 2.1 Are respite care services effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community? Do respite care services impact on rates of institutionalization of these seniors? Section 2.2 Which psychosocial interventions are effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community? Which interventions reduce the risk for institutionalization of seniors with dementia? Outcomes of Interest any quantitative measure of caregiver psychological health, including caregiver burden, depression, quality of life, well-being, strain, mastery (taking control of one’s situation), reactivity to behaviour problems, etc.; rate of institutionalization; and cost-effectiveness. Assessment of Quality of Evidence The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply: High Further research is very unlikely to change confidence in the estimate of effect. Moderate Further research is likely to have an important impact on confidence in the estimate of effect and may change the estimate. Low Further research is very likely to have an important impact on confidence in the estimate of effect and is likely to change the estimate. Very low Any estimate of effect is very uncertain. Summary of Findings Conclusions in Table 1 are drawn from Sections 2.1 and 2.2 of the report. Executive Summary Table 1: Summary of Conclusions on Caregiver-Directed Interventions Section Intervention Conclusion 2.1 Respite care for dementia caregivers Assessing the efficacy of respite care services using standard evidence-based approaches is difficult.There is limited evidence from RCTs that respite care is effective in improving outcomes for those caring for seniors with dementia.There is considerable qualitative evidence of the perceived benefits of respite care.Respite care is known as one of the key formal support services for alleviating caregiver burden in those caring for dementia patients.Respite care services need to be tailored to individual caregiver needs as there are vast differences among caregivers and patients with dementia (severity, type of dementia, amount of informal/formal support available, housing situation, etc.) 2.2a Behaviourai interventions (individual ≥ 6 sessions) There is moderate- to high-quality evidence that individual behavioural interventions (≥ 6 sessions), directed towards the caregiver (or combined with the patient) are effective in improving psychological health in dementia caregivers. 2.2b Multicomponent interventions There is moderate- to high-quality evidence that multicomponent interventions improve caregiver psychosocial health and may affect rates of institutionalization of dementia patients. RCT indicates randomized controlled trial. Patient-Directed Interventions for Dementia Objective The section on patient-directed interventions for dementia is broken down into 4 subsections with the following questions: 3.1 Physical Exercise for Seniors with Dementia – Secondary Prevention What is the effectiveness of physical exercise for the improvement or maintenance of basic activities of daily living (ADLs), such as eating, bathing, toileting, and functional ability, in seniors with mild to moderate dementia? 3.2 Nonpharmacologic and Nonexercise Interventions to Improve Cognitive Functioning in Seniors With Dementia – Secondary Prevention What is the effectiveness of nonpharmacologic interventions to improve cognitive functioning in seniors with mild to moderate dementia? 3.3 Physical Exercise for Delaying the Onset of Dementia – Primary Prevention Can exercise decrease the risk of subsequent cognitive decline/dementia? 3.4 Cognitive Interventions for Delaying the Onset of Dementia – Primary Prevention Does cognitive training decrease the risk of cognitive impairment, deterioration in the performance of basic ADLs or instrumental activities of daily living (IADLs),1 or incidence of dementia in seniors with good cognitive and physical functioning? Clinical Need: Target Population and Condition Secondary Prevention2 Exercise Physical deterioration is linked to dementia. This is thought to be due to reduced muscle mass leading to decreased activity levels and muscle atrophy, increasing the potential for unsafe mobility while performing basic ADLs such as eating, bathing, toileting, and functional ability. Improved physical conditioning for seniors with dementia may extend their independent mobility and maintain performance of ADL. Nonpharmacologic and Nonexercise Interventions Cognitive impairments, including memory problems, are a defining feature of dementia. These impairments can lead to anxiety, depression, and withdrawal from activities. The impact of these cognitive problems on daily activities increases pressure on caregivers. Cognitive interventions aim to improve these impairments in people with mild to moderate dementia. Primary Prevention3 Exercise Various vascular risk factors have been found to contribute to the development of dementia (e.g., hypertension, hypercholesterolemia, diabetes, overweight). Physical exercise is important in promoting overall and vascular health. However, it is unclear whether physical exercise can decrease the risk of cognitive decline/dementia. Nonpharmacologic and Nonexercise Interventions Having more years of education (i.e., a higher cognitive reserve) is associated with a lower prevalence of dementia in crossectional population-based studies and a lower incidence of dementia in cohorts followed longitudinally. However, it is unclear whether cognitive training can increase cognitive reserve or decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs or reduce the incidence of dementia. Description of Interventions Physical exercise and nonpharmacologic/nonexercise interventions (e.g., cognitive training) for the primary and secondary prevention of dementia are assessed in this review. Evidence-Based Analysis Methods A comprehensive search strategy was used to identify systematic reviews and RCTs that examined the effectiveness, safety and cost effectiveness of exercise and cognitive interventions for the primary and secondary prevention of dementia. Questions Section 3.1: What is the effectiveness of physical exercise for the improvement or maintenance of ADLs in seniors with mild to moderate dementia? Section 3.2: What is the effectiveness of nonpharmacologic/nonexercise interventions to improve cognitive functioning in seniors with mild to moderate dementia? Section 3.3: Can exercise decrease the risk of subsequent cognitive decline/dementia? Section 3.4: Does cognitive training decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs, or reduce the incidence of dementia in seniors with good cognitive and physical functioning? Assessment of Quality of Evidence The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology. As per GRADE the following definitions apply: High Further research is very unlikely to change confidence in the estimate of effect. Moderate Further research is likely to have an important impact on confidence in the estimate of effect and may change the estimate. Low Further research is very likely to have an important impact on confidence in the estimate of effect and is likely to change the estimate. Very low Any estimate of effect is very uncertain. Summary of Findings Table 2 summarizes the conclusions from Sections 3.1 through 3.4. Executive Summary Table 2: Summary of Conclusions on Patient-Directed Interventions* Section Intervention 1° or 2° Prevention Conclusion 3.1 Physical exercise for seniors with dementia 2°Prevention Physical exercise is effective for improving physical functioning in patients with dementia. 3.2 Nonpharmacologic and nonexercise interventions to improve cognitive functioning in seniors with dementia 2°Prevention Previous systematic review indicated that “cognitive training” is not effective in patients with dementia. A recent RCT suggests that CST (up to 7 weeks) is effective for improving cognitive function and quality of life in patients with dementia. 3.3 Physical exercise for delaying onset of dementia 1°Prevention Long-term outcomes Regular leisure time physical activity in midlife is associated with a reduced risk of dementia in later life (mean follow-up 21 years).       Short-term Outcomes Regular physical activity in seniors is associated with a reduced risk of cognitive decline (mean follow-up 2 years).Regular physical activity in seniors is associated with a reduced risk of dementia (mean follow-up 6–7 years). 3.4 Nonpharmacologic and nonexercise interventions for delaying onset of dementia 1°Prevention For seniors with good cognitive and physical functioning: Evidence that cognitive training for specific functions (memory, reasoning, and speed of processing) produces improvements in these specific domains.Limited inconclusive evidence that cognitive training can offset deterioration in the performance of self-reported IADL scores and performance assessments. * 1° indicates primary; 2°, secondary; CST, cognitive stimulation therapy; IADL, instrumental activities of daily living; RCT, randomized controlled trial. Benefit/Risk Analysis As per the GRADE Working Group, the overall recommendations consider 4 main factors: the trade-offs, taking into account the estimated size of the effect for the main outcome, the confidence limits around those estimates, and the relative value placed on the outcome; the quality of the evidence; translation of the evidence into practice in a specific setting, taking into consideration important factors that could be expected to modify the size of the expected effects such as proximity to a hospital or availability of necessary expertise; and uncertainty about the baseline risk for the population of interest. The GRADE Working Group also recommends that incremental costs of health care alternatives should be considered explicitly alongside the expected health benefits and harms. Recommendations rely on judgments about the value of the incremental health benefits in relation to the incremental costs. The last column in Table 3 reflects the overall trade-off between benefits and harms (adverse events) and incorporates any risk/uncertainty (cost-effectiveness). Executive Summary Table 3: Overall Summary Statement of the Benefit and Risk for Patient-Directed Interventions*   Intervention Quality Benefits Risks/Burden OverallStrength ofRecommendation Section 3.1: Physical Exercise for Seniors with Dementia – Secondary Prevention Exercise – mix Moderate Improvement in functional, cognitive and behavioural outcomes Short-term follow-up and heterogeneity in studiesUnclear if leads to delayed institutionalization Moderate           Section 3.2. Nonpharmacologic & Nonexercise Interventions to Improve Cognitive Functioning in Seniors with Dementia – Secondary Prevention Cognitive training Very low None Intervention does not offer significant benefit (possible type 2 error)Unclear if leads to delayed institutionalization Very low Cognitive stimulation therapy (CST) Moderate/Low Increased cognition and quality of life Unclear how CST compares with past terminologies and methodologies. Low         Short-term results.           Role and extent of maintenance CST.           Unclear how CST may impact functional dependence.           Unclear if leads to delayed institutionalization.   Section 3.3. Physical Exercise for Delaying the Onset of Dementia – Primary Prevention Exercise – walking only High/Moderate Short-term decreased incidence of dementia Unknown if leads to delayed institutionalization. High/Moderate Exercise – mix High/Moderate Short-term reduced risk of subsequent cognitive decline Unknown if leads to delayed diagnosis of dementia or institutionalization. High/Moderate Exercise – mix Moderate Long-term decreased incidence of dementia Unknown if leads to delayed institutionalization. Moderate Section 3.4. Nonpharmacologic & Nonexercise Interventions for Delaying the Onset of Dementia – Primary Prevention Cognitive interventions Low Cognitive improvements sustained after 5 years Results addressing functional outcomes unclear. Very low         Need more than 5-year follow-up.         (however, none of these improvements had effects beyond the specific cognitive domains of the intervention) No evidence to determine if cognitive training leads to:1) delayed diagnosis of dementia2) delayed institutionalization Economic Analysis Budget Impact Analysis of Effective Interventions for Dementia Caregiver-directed behavioural techniques and patient-directed exercise programs were found to be effective when assessing mild to moderate dementia outcomes in seniors living in the community. Therefore, an annual budget impact was calculated based on eligible seniors in the community with mild and moderate dementia and their respective caregivers who were willing to participate in interventional home sessions. Table 4 describes the annual budget impact for these interventions. Executive Summary Table 4: Annual Budget Impact (2008 Canadian Dollars) Parameter UnitCost($ Cdn) Unit AnnualCost($ Cdn) Population* No. ofPatients AnnualImpact($ Cdn) Caregiver-Directed Behavioural Techniques† Occupational Therapist 120.22 1 hour session -12 total 1,442.64 Caregivers of seniors with mild to moderate dementia who are willing to participate 56,629 81,695,125 Nurse 82.12 1 hour session - 12 total 985.44 Caregivers of seniors with mild to moderate dementia who are willing to participate 56,629 55,804,389 Patient-Directed Exercise Program‡ Occupational Therapist 120.22 1 hour session -32 total 3,847.04 Seniors with mild to moderate dementia who are willing to participate 38,696 148,866,672 Physiotherapist 108.49 1 hour session -32 total 3,471.68 Seniors with mild to moderate dementia who are willing to participate 38,696 134,341,585 Personal Support Worker 30.48 1 hour session -32 total 975.36 Seniors with mild to moderate dementia who are willing to participate 38,696 37,742,939 Recreation Therapist 25.85 1 hour session -32 total 827.20 Seniors with mild to moderate dementia who are willing to participate 38,696 32,009,678 Caregiver- and Patient-Directed Behavioural Techniques§ Occupational Therapist 120.22 1 hour session -10 total 1,202.20 Caregivers and seniors with mild to moderate dementia willing to participate 56,629 68,079,271 Nurse 82.12 1 hour session -10 total 821.20 Caregivers and seniors with mild to moderate dementia willing to participate 56,629 46,503,658 * Assumed 7% prevalence of dementia aged 65+ in Ontario. † Assumed 8 weekly sessions plus 4 monthly phone calls. ‡ Assumed 12 weekly sessions plus biweekly sessions thereafter (total of 20). § Assumed 2 sessions per week for first 5 weeks. Assumed 90% of seniors in the community with dementia have mild to moderate disease. Assumed 4.5% of seniors 65+ are in long-term care, and the remainder are in the community. Assumed a rate of participation of 60% for both patients and caregivers and of 41% for patient-directed exercise. Assumed 100% compliance since intervention administered at the home. Cost for trained staff from Ministry of Health and Long-Term Care data source. Assumed cost of personal support worker to be equivalent to in-home support. Cost for recreation therapist from Alberta government Website. Note: This budget impact analysis was calculated for the first year after introducing the interventions from the Ministry of Health and Long-Term Care perspective using prevalence data only. Prevalence estimates are for seniors in the community with mild to moderate dementia and their respective caregivers who are willing to participate in an interventional session administered at the home setting. Incidence and mortality rates were not factored in. Current expenditures in the province are unknown and therefore were not included in the analysis. Numbers may change based on population trends, rate of intervention uptake, trends in current programs in place in the province, and assumptions on costs. The number of patients was based on patients likely to access these interventions in Ontario based on assumptions stated below from the literature. An expert panel confirmed resource consumption. PMID:23074509

Compassion Fatigue: An Application of the Concept to Informal Caregivers of Family Members with Dementia

PubMed Central

Day, Jennifer R.; Anderson, Ruth A.

2011-01-01

Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understanding compassion fatigue in the informal caregiver population. Limitations of the model when applied to this population were identified as traumatic memories and the emotional relationship between parent and child, suggesting areas for future research. Conclusions. Research is needed to better understand the impact of compassion fatigue on informal caregivers through qualitative interviews, to identify informal caregivers at risk for compassion fatigue, and to provide an empirical basis for developing nursing interventions for caregivers experiencing compassion fatigue. PMID:22229086

Oral health-related quality of life and prosthetic status of nursing home residents with or without dementia.

PubMed

Klotz, Anna-Luisa; Hassel, Alexander Jochen; Schröder, Johannes; Rammelsberg, Peter; Zenthöfer, Andreas

2017-01-01

The objective of this cross-sectional study was to evaluate the effect of prosthetic status on the oral health-related quality of life (OHRQoL) of nursing home residents with or without dementia. The study was performed in 14 nursing homes across the federal state of Baden-Württemberg, Germany. All eligible participants were included, and general and medical information and information about their dental and prosthetic statuses were collected. The Geriatric Oral Health Assessment Index (GOHAI) was administered to evaluate OHRQoL. The Mini-Mental State Examination (MMSE) served to classify participants into living or not living with dementia according to the established cutoff value for dementia (MMSE <24). Parametric bivariate statistics and logistic regression models were used to analyze data at P <0.05. A total of 169 participants were included in this study. The mean age of the participants was 82.9 years. A total of some 70% of the sample was living with dementia. The mean GOHAI score along the sample was 49.1 (8.3), and 41% of the sample reported substantially compromised OHRQoL (GOHAI <50). OHRQoL was statistically similar for people with or without dementia ( P =0.234); objective oral health was also similar in both groups ( P >0.05). The number of teeth (odds ratio [OR]: 2.0), the type of prosthetic status (OR: 6.5), and denture-related treatment needs (OR: 2.4) were the major factors significantly affecting OHRQoL ( P <0.05). The OHRQoL of elderly nursing home residents is substantially compromised. Several prosthetic treatment needs for residents living with or without dementia were identified. Edentulism without tooth replacement and having <5 teeth resulted in an increased risk of substantially compromised OHRQoL. Further studies should be conducted to determine whether improvements in prosthetic status can increase OHRQoL.

Family caregiver challenges in dementia care in Australia and China: a critical perspective

PubMed Central

2014-01-01

Background Both Australia and China have a large proportion of people with dementia and the prevalence will triple in Australia and increase five times in China by 2050. The majority of people with dementia are reliant on family caregivers to provide daily care and to maintain the dignity in both countries. As a consequence, caregiver burden has become a major concern because of the negative impact on the care recipients’ and the caregivers’ health. It is strongly recommended that cross-national collaboration should be conducted to share experiences in fighting dementia. The aim of this study was to compare socially and culturally constructed enablers and barriers pertinent to dementia caregivers in one capital city in Australia and one capital city in China through critical reflection on the caregivers’ subjective and objective experiences for the improvement of dementia care services in both countries. Methods Giddens’ Structuration Theory was used as a framework to guide a concurrent mixed methods design with the qualitative strand as a priority. In the qualitative strand, data were collected by focus groups and in-depth interviews while in the quantitative strand, data were collected by questionnaire survey. Results In total 148 caregivers participated in the project with 57 of them from Australia (26 and 31 in the qualitative and quantitative strands respectively) and 91 of them from China (23 and 68 in the qualitative and quantitative strands respectively). Findings from the qualitative and quantitative strands were presented as three categories: A higher objective burden in the Chinese cohort versus a higher subjective burden in the Australian cohort; Unmet need for caregiver support in Australia and China; and Expectations for improving dementia services in Australia and for developing dementia services in China. Conclusions Dementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like China. In Australia, dementia services need to have more components of preventing or reducing caregivers’ subjective burden. As subjective burden is mediated by culture, caregiver support mechanisms should consider caregivers’ needs associated with their cultural values. PMID:24456381

The role of participatory music making in supporting people with dementia in hospital environments.

PubMed

Daykin, Norma; Parry, Barbara; Ball, Kerry; Walters, David; Henry, Ann; Platten, Bronwyn; Hayden, Rachel

2017-01-01

Background Improving the quality of care for people with dementia in general hospitals is a key priority. Creative activities including music have been examined for their potential role in enhancing quality of life for people with dementia, although relatively few studies have evaluated their use in acute hospital settings. Methods A mixed methods study examined the effects of a ten week period of weekly music sessions on the wellbeing of patients with dementia and on the ward environment in an acute elderly care service in a UK hospital. Potential effects of the music project on the ward environment were examined by comparing descriptive quantitative ward level data for two equivalent time periods, one with music and one with no music. The impact of the activity on participants' wellbeing was assessed using observational data as well as semi-structured interviews and focus groups with patients, visitors, the musician and staff. Results Ward level data were available for 85 patients with a dementia diagnosis who had stayed on the wards during the study periods. Comparison between the two periods showed a number of differences between the music and the non-music time periods, including a reduction in prescription of antipsychotic drugs. However, many factors could have contributed to the differences in the ward environment. Observational data revealed nuanced responses to music and suggested that participants generally enjoyed the activity. The impacts of music making were mediated strongly by staff responses and hospital organisation. Conclusion Data from this limited pilot study suggest that music is a useful intervention for enhancing patient and staff experiences and improving care in acute dementia care environments. The suggestion that use of anti-psychotic drugs may be reduced when music is present warrants further research.

[Implementation and (cost-)effectiveness of case management for people with dementia and their informal caregivers: results of the COMPAS study].

PubMed

van Mierlo, Lisa D; MacNeil-Vroomen, Janet; Meiland, Franka J M; Joling, Karlijn J; Bosmans, Judith E; Dröes, Rose Marie; Moll van Charante, Eric P; de Rooij, Sophia E J A; van Hout, Hein P J

2016-12-01

Different forms of case management for dementia have emerged over the past few years. In the COMPAS study (Collaborative dementia care for patients and caregivers study), two prominent Dutch case management forms were studied: the linkage and the integrated care form. Evaluation of the (cost)effectiveness of two dementia case management forms compared to usual care as well as factors that facilitated or impeded their implementation. A mixed methods design with a) a prospective, observational controlled cohort study with 2 years follow-up among 521 dyads of people with dementia and their primary informal caregiver with and without case management; b) interviews with 22 stakeholders on facilitating and impeding factors of the implementation and continuity of the two case management models. Outcome measures were severity and frequency of behavioural problems (NPI) for the person with dementia and mental health complaints (GHQ-12) for the informal caregiver, total met and unmet care needs (CANE) and quality adjusted life years (QALYs). Outcomes showed a better quality of life of informal caregivers in the integrated model compared to the linkage model. Caregivers in the control group reported more care needs than those in both case management groups. The independence of the case management provider in the integrated model facilitated the implementation, while the rivalry between multiple providers in the linkage model impeded the implementation. The costs of care were lower in the linkage model (minus 22 %) and integrated care model (minus 33 %) compared to the control group. The integrated care form was (very) cost-effective in comparison with the linkage form or no case management. The integrated care form is easy to implement.

Greater Independence in Activities of Daily Living is Associated with Higher Health-Related Quality of Life Scores in Nursing Home Residents with Dementia

PubMed Central

Chan, Charice S.; Slaughter, Susan E.; Jones, C. Allyson; Wagg, Adrian S.

2015-01-01

Health-related quality of life (HRQL) for nursing home residents is important, however, the concept of quality of life is broad, encompasses many domains and is difficult to assess in people with dementia. Basic activities of daily living (ADL) are measured routinely in nursing homes using the Resident Assessment Instrument-Minimum Data Set Version 2.0 (RAI-MDS) and Functional Independence Measure (FIM) instrument. We examined the relationship between HRQL and ADL to assess the future possibility of ADL dependency level serving as a surrogate measure of HRQL in residents with dementia. To assess ADL, measures derived from the RAI-MDS and FIM data were gathered for 111 residents at the beginning of our study and at 6-month follow-up. Higher scores for independence in ADL were correlated with higher scores for a disease-specific HRQL measure, the Quality of Life—Alzheimer’s Disease Scale. Preliminary evidence suggests that FIM-assessed ADL is associated with HRQL for these residents. The associations of the dressing and toileting items with HRQL were particularly strong. This finding suggests the importance of ADL function in HRQL. The RAI-MDS ADL scales should be used with caution to evaluate HRQL. PMID:27417776

The first use of dementia care mapping in the care for older people with intellectual disability: a process analysis according to the RE-AIM framework.

PubMed

Schaap, Feija D; Dijkstra, Geke J; Finnema, Evelyn J; Reijneveld, Sijmen A

2017-11-24

The aging of the population with intellectual disability (ID), with associated conseqences as dementia, creates a need for evidence-based methods to support staff. Dementia Care Mapping (DCM) is perceived to be valuable in dementia care and promising in ID-care. The aim of this study was to evaluate the process of the first use of DCM in ID-care. DCM was used among older people with ID and care-staff in 12 group homes of six organisations. We obtained data on the first use of DCM in ID-care via focus-group discussions and face-to-face interviews with: care-staff (N = 24), managers (N = 10), behavioural specialists (N = 7), DCM-ID mappers (N = 12), and DCM-trainers (N = 2). We used the RE-AIM framework for a thematic process-analysis. All available staff (94%) participated in DCM (reach). Regarding its efficacy, staff considered DCM valuable; it provided them new knowledge and skills. Participants intended to adopt DCM, by continuing and expanding its use in their organisations. DCM was implemented as intended, and strictly monitored and supported by DCM-trainers. As for maintenance, DCM was further tailored to ID-care and a version for individual ID-care settings was developed, both as standards for international use. To sustain the use of DCM in ID-care, a multidisciplinary, interorganisational learning network was established. DCM tailored to ID-care proved to be an appropriate and valuable method to support staff in their work with aging clients, and it allows for further implementation. This is a first step to obtain an evidence-based method in ID-care for older clients.

Comparing Dutch case management care models for people with dementia and their caregivers: The design of the COMPAS study.

PubMed

MacNeil Vroomen, Janet; Van Mierlo, Lisa D; van de Ven, Peter M; Bosmans, Judith E; van den Dungen, Pim; Meiland, Franka J M; Dröes, Rose-Marie; Moll van Charante, Eric P; van der Horst, Henriëtte E; de Rooij, Sophia E; van Hout, Hein P J

2012-05-28

Dementia care in the Netherlands is shifting from fragmented, ad hoc care to more coordinated and personalised care. Case management contributes to this shift. The linkage model and a combination of intensive case management and joint agency care models were selected based on their emerging prominence in the Netherlands. It is unclear if these different forms of case management are more effective than usual care in improving or preserving the functioning and well-being at the patient and caregiver level and at the societal cost. The objective of this article is to describe the design of a study comparing these two case management care models against usual care. Clinical and cost outcomes are investigated while care processes and the facilitators and barriers for implementation of these models are considered. Mixed methods include a prospective, observational, controlled, cohort study among persons with dementia and their primary informal caregiver in regions of the Netherlands with and without case management including a qualitative process evaluation. Inclusion criteria for the cohort study are: community-dwelling individuals with a dementia diagnosis who are not terminally-ill or anticipate admission to a nursing home within 6 months and with an informal caregiver who speaks fluent Dutch. Person with dementia-informal caregiver dyads are followed for two years. The primary outcome measure is the Neuropsychiatric Inventory for the people with dementia and the General Health Questionnaire for their caregivers. Secondary outcomes include: quality of life and needs assessment in both persons with dementia and caregivers, activity of daily living, competence of care, and number of crises. Costs are measured from a societal perspective using cost diaries. Process indicators measure the quality of care from the participant's perspective. The qualitative study uses purposive sampling methods to ensure a wide variation of respondents. Semi-structured interviews with stakeholders based on the theoretical model of adaptive implementation are planned. This study provides relevant insights into care processes, description of two case management models along with clinical and economic data from persons with dementia and caregivers to clarify important differences in two case management care models compared to usual care.

Cost-effectiveness analyses for mirtazapine and sertraline in dementia: randomised controlled trial.

PubMed

Romeo, Renee; Knapp, Martin; Hellier, Jennifer; Dewey, Michael; Ballard, Clive; Baldwin, Robert; Bentham, Peter; Burns, Alistair; Fox, Chris; Holmes, Clive; Katona, Cornelius; Lawton, Claire; Lindesay, James; Livingston, Gill; McCrae, Niall; Moniz-Cook, Esme; Murray, Joanna; Nurock, Shirley; O'Brien, John; Poppe, Michaela; Thomas, Alan; Walwyn, Rebecca; Wilson, Kenneth; Banerjee, Sube

2013-02-01

Depression is a common and costly comorbidity in dementia. There are very few data on the cost-effectiveness of antidepressants for depression in dementia and their effects on carer outcomes. To evaluate the cost-effectiveness of sertraline and mirtazapine compared with placebo for depression in dementia. A pragmatic, multicentre, randomised placebo-controlled trial with a parallel cost-effectiveness analysis (trial registration: ISRCTN88882979 and EudraCT 2006-000105-38). The primary cost-effectiveness analysis compared differences in treatment costs for patients receiving sertraline, mirtazapine or placebo with differences in effectiveness measured by the primary outcome, total Cornell Scale for Depression in Dementia (CSDD) score, over two time periods: 0-13 weeks and 0-39 weeks. The secondary evaluation was a cost-utility analysis using quality-adjusted life years (QALYs) computed from the Euro-Qual (EQ-5D) and societal weights over those same periods. There were 339 participants randomised and 326 with costs data (111 placebo, 107 sertraline, 108 mirtazapine). For the primary outcome, decrease in depression, mirtazapine and sertraline were not cost-effective compared with placebo. However, examining secondary outcomes, the time spent by unpaid carers caring for participants in the mirtazapine group was almost half that for patients receiving placebo (6.74 v. 12.27 hours per week) or sertraline (6.74 v. 12.32 hours per week). Informal care costs over 39 weeks were £1510 and £1522 less for the mirtazapine group compared with placebo and sertraline respectively. In terms of reducing depression, mirtazapine and sertraline were not cost-effective for treating depression in dementia. However, mirtazapine does appear likely to have been cost-effective if costing includes the impact on unpaid carers and with quality of life included in the outcome. Unpaid (family) carer costs were lower with mirtazapine than sertraline or placebo. This may have been mediated via the putative ability of mirtazapine to ameliorate sleep disturbances and anxiety. Given the priority and the potential value of supporting family carers of people with dementia, further research is warranted to investigate the potential of mirtazapine to help with behavioural and psychological symptoms in dementia and in supporting carers.

What works in delivering dementia education or training to hospital staff? A critical synthesis of the evidence.

PubMed

Surr, Claire A; Gates, Cara

2017-10-01

The quality of care delivered to people with dementia in hospital settings is of international concern. People with dementia occupy up to one quarter of acute hospital beds, however, staff working in hospitals report lack of knowledge and skills in caring for this group. There is limited evidence about the most effective approaches to training hospital staff on dementia. The purpose of this literature review was to examine published evidence on the most effective approaches to dementia training and education for hospital staff. The review was conducted using critical synthesis and included qualitative, quantitative and mixed/multi- methods studies. Kirkpatrick's four level model for the evaluation of training interventions was adopted to structure the review. The following databases were searched: MEDLINE, PsycINFO, CINAHL, AMED, British Education Index, Education Abstracts, ERIC (EbscoHost), The Cochrane Library-Cochrane reviews, Economic evaluations, CENTRAL (Wiley), HMIC (Ovid), ASSIA, IBSS (Proquest), Conference Proceedings Citation Indexes (Web of Science), using a combination of keyword for the following themes: Dementia/Alzheimer's, training/education, staff knowledge and patient outcomes. A total of 20 papers were included in the review, the majority of which were low or medium quality, impacting on generalisability. The 16 different training programmes evaluated in the studies varied in terms of duration and mode of delivery, although most employed face-to-face didactic techniques. Studies predominantly reported on reactions to training and knowledge, only one study evaluated outcomes across all of the levels of the Kirkpatrick model. Key features of training that appeared to be more acceptable and effective were identified related to training content, delivery methods, practicalities, duration and support for implementation. The review methodology enabled inclusion of a broad range of studies and permitted common features of successful programmes to be identified. Such features may be used in the design of future dementia training programmes, to increase their potential for effectiveness. Further research on the features of effective dementia training for hospital staff is required. Copyright © 2017 Elsevier Ltd. All rights reserved.

IDEA intervention to prevent depressive symptoms and promote well-being in early-stage dementia: protocol for a randomised controlled feasibility study.

PubMed

Tuijt, Remco; Livingston, Gill; Gould, Rebecca L; Jones, Rebecca; Verdaguer, Elisabet Sole; Orgeta, Vasiliki

2018-02-08

Depressive symptoms are common among people with dementia, impacting quality of life and cognitive and functional decline. Currently, little is known about the acceptability and feasibility of psychological interventions for people with mild dementia, with recent reviews identifying the need for further evidence. Developing and evaluating psychological interventions to prevent and treat these symptoms is, therefore, an important clinical and research priority. This protocol describes a study testing the acceptability and feasibility of a manual-based behavioural activation (BA) intervention for preventing and treating depressive symptoms in people with mild dementia. The aim of this study is to explore the feasibility of conducting a pragmatic multicentre randomised controlled trial of clinical effectiveness of an eight-session intervention. The Intervention to prevent Depressive symptoms and promote well-being in EArly-stage dementia (IDEA) programme supports people with dementia and their family carers in identifying and scheduling enjoyable and meaningful activities. Sixty people who have received a diagnosis of dementia of any type in the last 6 months will be recruited via memory clinics. Further criteria are a Mini-Mental State Examination score of ≥20, and a family carer who can assist with the intervention. Consenting participants will be randomised in a ratio of 2:1 to BA or to treatment as usual. Analyses will estimate parameters such as rates of recruitment, retention and number of sessions completed. Questionnaires measuring depressive symptoms and quality of life for both the person with dementia and their carer will be completed at baseline, 3 and 6 months. Qualitative interviews will explore acceptability of the intervention, study procedures and experiences of the sessions. This study received a favourable ethical opinion from the London Camberwell St Giles Research Ethics Committee (16/LO/0540). We will disseminate findings at key conferences, the Alzheimer's Society and University College London websites and local stakeholder events. ISRCTN75503960; Pre-results. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Comparing Dutch Case management care models for people with dementia and their caregivers: The design of the COMPAS study

PubMed Central

2012-01-01

Background Dementia care in the Netherlands is shifting from fragmented, ad hoc care to more coordinated and personalised care. Case management contributes to this shift. The linkage model and a combination of intensive case management and joint agency care models were selected based on their emerging prominence in the Netherlands. It is unclear if these different forms of case management are more effective than usual care in improving or preserving the functioning and well-being at the patient and caregiver level and at the societal cost. The objective of this article is to describe the design of a study comparing these two case management care models against usual care. Clinical and cost outcomes are investigated while care processes and the facilitators and barriers for implementation of these models are considered. Design Mixed methods include a prospective, observational, controlled, cohort study among persons with dementia and their primary informal caregiver in regions of the Netherlands with and without case management including a qualitative process evaluation. Inclusion criteria for the cohort study are: community-dwelling individuals with a dementia diagnosis who are not terminally-ill or anticipate admission to a nursing home within 6 months and with an informal caregiver who speaks fluent Dutch. Person with dementia-informal caregiver dyads are followed for two years. The primary outcome measure is the Neuropsychiatric Inventory for the people with dementia and the General Health Questionnaire for their caregivers. Secondary outcomes include: quality of life and needs assessment in both persons with dementia and caregivers, activity of daily living, competence of care, and number of crises. Costs are measured from a societal perspective using cost diaries. Process indicators measure the quality of care from the participant’s perspective. The qualitative study uses purposive sampling methods to ensure a wide variation of respondents. Semi-structured interviews with stakeholders based on the theoretical model of adaptive implementation are planned. Discussion This study provides relevant insights into care processes, description of two case management models along with clinical and economic data from persons with dementia and caregivers to clarify important differences in two case management care models compared to usual care. PMID:22640695

The contribution of caregiver psychosocial factors to distress associated with behavioural and psychological symptoms in dementia.

PubMed

Feast, Alexandra; Orrell, Martin; Russell, Ian; Charlesworth, Georgina; Moniz-Cook, Esme

2017-01-01

The objective of the study is to examine caregiver factors as predictors of BPSD-related distress and their potential mechanisms. Informal caregivers of people with dementia (n = 157) recruited from 28 community mental health teams in six NHS Trusts across England completed questionnaires regarding psychosocial factors (relationship quality, competence, guilt, health-related quality of life in the caregiver and person with dementia, reactivity to behavioural and psychological symptoms in dementia [BPSD] and burden) and frequency of BPSD. Analyses of BPSD-related distress include hierarchical multiple regression, mediation, moderation and path analysis. Caregiver psychosocial factors explained 56% of the variance in BPSD-related distress. After controlling for these factors, frequency of BPSD was not a significant predictor of BPSD-related distress. Caregiver reactivity to BPSD, burden, competence and relationship quality directly influenced BPSD-related distress. Guilt influenced distress indirectly via competence, burden and reactivity to BPSD. The final model accounted for 41% of the variance in BPSD-related distress and achieved a good fit to the data (χ 2  = 23.920, df = 19, p = 0.199). Caregiver psychosocial factors including sense of competence, guilt, burden and reactivity to BPSD contribute to BPSD-related distress. Tailored interventions for managing behaviour problems in family settings could focus on these factors associated with BPSD-related distress to minimise distress in families. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

NIA-AA Research Framework: Toward a biological definition of Alzheimer’s disease

PubMed Central

Jack, Clifford R.; Bennett, David A.; Blennow, Kaj; Carrillo, Maria C.; Dunn, Billy; Haeberlein, Samantha Budd; Holtzman, David M.; Jagust, William; Jessen, Frank; Karlawish, Jason; Liu, Enchi; Molinuevo, Jose Luis; Montine, Thomas; Phelps, Creighton; Rankin, Katherine P.; Rowe, Christopher C.; Scheltens, Philip; Siemers, Eric; Snyder, Heather M.; Sperling, Reisa

2018-01-01

In 2011, the National Institute on Aging and Alzheimer’s Association created separate diagnostic recommendations for the preclinical, mild cognitive impairment, and dementia stages of Alzheimer’s disease. Scientific progress in the interim led to an initiative by the National Institute on Aging and Alzheimer’s Association to update and unify the 2011 guidelines. This unifying update is labeled a “research framework” because its intended use is for observational and interventional research, not routine clinical care. In the National Institute on Aging and Alzheimer’s Association Research Framework, Alzheimer’s disease (AD) is defined by its underlying pathologic processes that can be documented by postmortem examination or in vivo by biomarkers. The diagnosis is not based on the clinical consequences of the disease (i.e., symptoms/signs) in this research framework, which shifts the definition of AD in living people from a syndromal to a biological construct. The research framework focuses on the diagnosis of AD with biomarkers in living persons. Biomarkers are grouped into those of β amyloid deposition, pathologic tau, and neurodegeneration [AT(N)]. This ATN classification system groups different biomarkers (imaging and biofluids) by the pathologic process each measures. The AT(N) system is flexible in that new biomarkers can be added to the three existing AT(N) groups, and new biomarker groups beyond AT(N) can be added when they become available. We focus on AD as a continuum, and cognitive staging may be accomplished using continuous measures. However, we also outline two different categorical cognitive schemes for staging the severity of cognitive impairment: a scheme using three traditional syndromal categories and a six-stage numeric scheme. It is important to stress that this framework seeks to create a common language with which investigators can generate and test hypotheses about the interactions among different pathologic processes (denoted by biomarkers) and cognitive symptoms. We appreciate the concern that this biomarker-based research framework has the potential to be misused. Therefore, we emphasize, first, it is premature and inappropriate to use this research framework in general medical practice. Second, this research framework should not be used to restrict alternative approaches to hypothesis testing that do not use biomarkers. There will be situations where biomarkers are not available or requiring them would be counterproductive to the specific research goals (discussed in more detail later in the document). Thus, biomarker-based research should not be considered a template for all research into age-related cognitive impairment and dementia; rather, it should be applied when it is fit for the purpose of the specific research goals of a study. Importantly, this framework should be examined in diverse populations. Although it is possible that β-amyloid plaques and neurofibrillary tau deposits are not causal in AD pathogenesis, it is these abnormal protein deposits that define AD as a unique neurodegenerative disease among different disorders that can lead to dementia. We envision that defining AD as a biological construct will enable a more accurate characterization and understanding of the sequence of events that lead to cognitive impairment that is associated with AD, as well as the multifactorial etiology of dementia. This approach also will enable a more precise approach to interventional trials where specific pathways can be targeted in the disease process and in the appropriate people. PMID:29653606

The provision of assistive technology products and services for people with dementia in the United Kingdom.

PubMed

Gibson, Grant; Newton, Lisa; Pritchard, Gary; Finch, Tracy; Brittain, Katie; Robinson, Louise

2016-07-01

In this review we explore the provision of assistive technology products and services currently available for people with dementia within the United Kingdom. A scoping review of assistive technology products and services currently available highlighted 171 products or product types and 331 services. In addition, we assimilated data on the amount and quality of information provided by assistive technology services alongside assistive technology costs. We identify a range of products available across three areas: assistive technology used 'by', 'with' and 'on' people with dementia. Assistive technology provision is dominated by 'telecare' provided by local authorities, with services being subject to major variations in pricing and information provision; few currently used available resources for assistive technology in dementia. We argue that greater attention should be paid to information provision about assistive technology services across an increasingly mixed economy of dementia care providers, including primary care, local authorities, private companies and local/national assistive technology resources. © The Author(s) 2014.

Depression in dementia patients: issues and challenges for a physician.

PubMed

Pattanayak, Raman Deep; Sagar, Rajesh

2011-10-01

Depression and dementia share a complex and interesting relationship, with a possibility of biological linkages between the two disorders. Research has shown consistently increased prevalence of depression in patients suffering from dementia. As many as one fourth to half of dementia patients are likely to experience clinical depression during the course of illness. However, the onset of depressive symptoms is often misinterpreted as worsening of cognitive decline and hence, it remains under-diagnosed. The lack of a coherent account from patient, frequent overlap of symptoms, inadequate sensitization of physicians may enhance the diagnostic difficulty. Undetected depression adds to patient disability and caregiver burden. Early recognition and proper intervention will improve the patient outcomes including quality of life. Selective serotonin reuptake inhibitors, especially Sertraline and Citalopram, with a very gradual dose titration are likely to benefit. Certain behavioral interventions e.g involvement of patient in physical activity and pleasant activities has been found to be useful. All dementia cases should be routinely screened for depression and managed accordingly.

Availability and Primary Health Care Orientation of Dementia-Related Services in Rural Saskatchewan, Canada.

PubMed

Morgan, Debra G; Kosteniuk, Julie G; Stewart, Norma J; O'Connell, Megan E; Kirk, Andrew; Crossley, Margaret; Dal Bello-Haas, Vanina; Forbes, Dorothy; Innes, Anthea

2015-01-01

Community-based services are important for improving outcomes for individuals with dementia and their caregivers. This study examined: (a) availability of rural dementia-related services in the Canadian province of Saskatchewan, and (b) orientation of services toward six key attributes of primary health care (i.e., information/education, accessibility, population orientation, coordinated care, comprehensiveness, quality of care). Data were collected from 71 rural Home Care Assessors via cross-sectional survey. Basic health services were available in most communities (e.g., pharmacists, family physicians, palliative care, adult day programs, home care, long-term care facilities). Dementia-specific services typically were unavailable (e.g., health promotion, counseling, caregiver support groups, transportation, week-end/night respite). Mean scores on the primary health care orientation scales were low (range 12.4 to 17.5/25). Specific services to address needs of rural individuals with dementia and their caregivers are limited in availability and fit with primary health care attributes.

Quality use of antipsychotic medicines inresidential aged care facilities in New Zealand.

PubMed

Ndukwe, Henry C; Nishtala, Prasad S; Wang, Ting; Tordoff, June M

2016-12-01

INTRODUCTION Antipsychotic medicines are used regularly or when required in residential aged care facilities to treat symptoms of dementia, but have been associated with several adverse effects. AIM The aim of this study was to examine 'quality use' of antipsychotic medicines in residential aged care facilities in New Zealand, by surveying nurse managers. METHODS A cross-sectional survey was mailed to 318 nurse managers working in a nationally representative sample of aged care facilities. A purpose-developed, pre-tested, 22-item structured questionnaire was used to explore practice related to the quality use of antipsychotic medicines. RESULTS Overall, 31.4% of nurse managers responded to the survey. They mostly (88%) had ≥ 1 year's relevant work experience and 83% of facilities provided care for those within the range of 21 to 100 residents. Respondents reported that staff education on dementia management occurred early in employment. Two-thirds of participants reported non-pharmacological interventions were commonly used for managing challenging behaviours, while less than half (45%) cited administering antipsychotic medicine. Respondents reported 'managing behavioural symptoms' (81%) as one of the main indications for antipsychotic use. Frequently identified adverse effects of antipsychotic medicines were drowsiness or sedation (64%) and falls (61%). Over 90% reported general practitioners reviewed antipsychotic use with respect to residents' target behaviour 3-monthly, and two-thirds used an assessment tool to appraise residents' behaviour. DISCUSSION Staff education on dementia management soon after employment and resident 3-monthly antipsychotic medicine reviews were positive findings. However, a wider use of behavioural assessment tools might improve the care of residents with dementia and the quality use of antipsychotic medicines.

[Theatre as communication method in psychogeriatric care: effects on behaviour, mood and quality of life of people with dementia ].

PubMed

van Dijk, A M; van Weert, J C M; Dröes, R M

2012-12-01

Recently, a new communication method was introduced in nursing homes for people with dementia. This so-called Veder Method, developed by professional actors with former educational background in care,combines proven effective emotion-oriented care methods, like reminiscence,with theatrical stimuli like songs and poetry. The method is applied during theatre shows and living room theatre activities. In this exploratory study the surplus value of a living room theatre activity according to the Veder method compared to a reminiscence group activity was evaluated. Within a quasi experimental design, three groups of nursing home residents with dementia were compared: Experimental group 1 (E1; N=64)joined a 'living room theatre activity' offered by trained caregivers. Experimental group 2 (E2; N=31) joined a 'living room theatre activity' offered by professional actors. The control group (N=52) received a reminiscence group activity. Behaviour, mood and quality of life were measured using standardized observation scales at three points in time: (T1) pretest; (T2)during the intervention and; (T3) posttest, two hours after the intervention. During and after the intervention, positive effects were found in favour of E2 on behaviour (i.e. laughing, recalled memories), mood (i.e. happy/content) and quality of life (i.e. social involvement, feeling at home). A living room theatre activity according to the Veder Method has more positive effect on nursing home residents compared to a normal reminiscence group activity, if offered by professional actors.This article is a slightly edited translation of Does theatre improve the quality of life of people with dementia? International Psychogeriatrics2012;24: 36r381 by the same authors.

Person-centered care and engagement via technology of residents with dementia in aged care facilities.

PubMed

Goh, Anita M Y; Loi, Samantha M; Westphal, Alissa; Lautenschlager, Nicola T

2017-12-01

Touchscreen technology (TT) is a resource that can improve the quality of life of residents with dementia, and care staff, in residential aged care facilities (RACF) through a person-centered care approach. To enable the use of TTs to engage and benefit people with dementia in RACFs, education is needed to explore how these devices may be used, what facilitates use, and how to address barriers. We sought to provide education and explore RACF staff views and barriers on using TT to engage their residents with dementia. An educational session on using TT with residents with dementia was given to staff from three long-term RACFs in Melbourne, Australia. A cross-sectional convenience sample of 17 staff members (personal care attendants, registered nurses, enrolled nurses, allied health clinicians, and domestic staff) who attended were administered questionnaires pre- and post-sessions. As a result of the education seminar, they were significantly more confident in their ability to use TT devices with residents. TT, and education to staff about its use with residents with dementia, is a useful strategy to enhance RACF staff knowledge and confidence, thereby enhancing the use of technology in RACFs in order to improve care standards in people with dementia.

Global music approach to persons with dementia: evidence and practice

PubMed Central

Raglio, Alfredo; Filippi, Stefania; Bellandi, Daniele; Stramba-Badiale, Marco

2014-01-01

Music is an important resource for achieving psychological, cognitive, and social goals in the field of dementia. This paper describes the different types of evidence-based music interventions that can be found in literature and proposes a structured intervention model (global music approach to persons with dementia, GMA-D). The literature concerning music and dementia was considered and analyzed. The reported studies included more recent studies and/or studies with relevant scientific characteristics. From this background, a global music approach was proposed using music and sound–music elements according to the needs, clinical characteristics, and therapeutic–rehabilitation goals that emerge in the care of persons with dementia. From the literature analysis the following evidence-based interventions emerged: active music therapy (psychological and rehabilitative approaches), active music therapy with family caregivers and persons with dementia, music-based interventions, caregivers singing, individualized listening to music, and background music. Characteristics of each type of intervention are described and discussed. Standardizing the operational methods and evaluation of the single activities and a joint practice can contribute to achieve the validation of the application model. The proposed model can be considered a low-cost nonpharmacological intervention and a therapeutic–rehabilitation method for the reduction of behavioral disturbances, for stimulation of cognitive functions, and for increasing the overall quality of life of persons with dementia. PMID:25336931

Insomnia and risk of dementia in older adults: Systematic review and meta-analysis.

PubMed

de Almondes, Katie Moraes; Costa, Mônica Vieira; Malloy-Diniz, Leandro Fernandes; Diniz, Breno Satler

2016-06-01

There are cross-sectional evidences of an association between sleep disorders and cognitive impairment on older adults. However, there are no consensus by means of longitudinal studies data on the increased risk of developing dementia related to insomnia. We conduct a systematic review and meta-analysis to evaluate the risk of incident all-cause dementia in individuals with insomnia in population-based prospective cohort studies. Five studies of 5.242 retrieved references were included in the meta-analysis. We used the generic inverse variance method with a random effects model to calculate the pooled risk of dementia in older adults with insomnia. We assessed heterogeneity in the meta-analysis by means of the Q-test and I2 index. Study quality was assessed with the Newcastle-Ottawa Scale The results showed that Insomnia was associated with a significant risk of all-cause dementia (RR = 1.53 CI95% (1.07-2.18), z = 2.36, p = 0.02). There was evidence for significant heterogeneity in the analysis (q-value = 2.4, p < 0.001 I2 = 82%). Insomnia is associated with an increased risk for dementia. This results provide evidences that future studies should investigate dementia prevention among elderly individuals through screening and proper management of insomnia. Copyright © 2016 Elsevier Ltd. All rights reserved.

A cross-sectional study to compare care needs of individuals with and without dementia in residential homes in the Netherlands

PubMed Central

2013-01-01

Background Little is known about met and unmet needs of individuals in residential care, many of whom suffer from dementia. Unmet needs are associated with a decreased quality of life, worse mental health, dissatisfaction with services, and increased costs of care. The aim of this study was to compare the number and type of (unmet) needs of people with and without dementia in residential care in the Netherlands. Methods 187 individuals in residents care or their relatives were interviewed to identify their care needs on 24 topics using the Camberwell Assessment of Needs for the Elderly (CANE) interview. Results Individuals diagnosed with probable dementia reported more needs in total and more unmet needs in comparison with individuals without this diagnosis. More specifically, differences were found for the topics “accommodation”, “money”, “benefits”, “medication management”, “incontinence”, “memory problems”, “inadvertent self-harm”, “company” and “daytime activities”. Conclusions It seems that the differences in care needs between individuals with and without dementia can be attributed to actual differences in physical and cognitive functioning. Residents with dementia reported more often unmet needs which might imply that care for people with dementia can still be better attuned to their needs. PMID:23706150

Detecting Dementia Through Interactive Computer Avatars

PubMed Central

Adachi, Hiroyoshi; Ukita, Norimichi; Ikeda, Manabu; Kazui, Hiroaki; Kudo, Takashi; Nakamura, Satoshi

2017-01-01

This paper proposes a new approach to automatically detect dementia. Even though some works have detected dementia from speech and language attributes, most have applied detection using picture descriptions, narratives, and cognitive tasks. In this paper, we propose a new computer avatar with spoken dialog functionalities that produces spoken queries based on the mini-mental state examination, the Wechsler memory scale-revised, and other related neuropsychological questions. We recorded the interactive data of spoken dialogues from 29 participants (14 dementia and 15 healthy controls) and extracted various audiovisual features. We tried to predict dementia using audiovisual features and two machine learning algorithms (support vector machines and logistic regression). Here, we show that the support vector machines outperformed logistic regression, and by using the extracted features they classified the participants into two groups with 0.93 detection performance, as measured by the areas under the receiver operating characteristic curve. We also newly identified some contributing features, e.g., gap before speaking, the variations of fundamental frequency, voice quality, and the ratio of smiling. We concluded that our system has the potential to detect dementia through spoken dialog systems and that the system can assist health care workers. In addition, these findings could help medical personnel detect signs of dementia. PMID:29018636

Global music approach to persons with dementia: evidence and practice.

PubMed

Raglio, Alfredo; Filippi, Stefania; Bellandi, Daniele; Stramba-Badiale, Marco

2014-01-01

Music is an important resource for achieving psychological, cognitive, and social goals in the field of dementia. This paper describes the different types of evidence-based music interventions that can be found in literature and proposes a structured intervention model (global music approach to persons with dementia, GMA-D). The literature concerning music and dementia was considered and analyzed. The reported studies included more recent studies and/or studies with relevant scientific characteristics. From this background, a global music approach was proposed using music and sound-music elements according to the needs, clinical characteristics, and therapeutic-rehabilitation goals that emerge in the care of persons with dementia. From the literature analysis the following evidence-based interventions emerged: active music therapy (psychological and rehabilitative approaches), active music therapy with family caregivers and persons with dementia, music-based interventions, caregivers singing, individualized listening to music, and background music. Characteristics of each type of intervention are described and discussed. Standardizing the operational methods and evaluation of the single activities and a joint practice can contribute to achieve the validation of the application model. The proposed model can be considered a low-cost nonpharmacological intervention and a therapeutic-rehabilitation method for the reduction of behavioral disturbances, for stimulation of cognitive functions, and for increasing the overall quality of life of persons with dementia.

Risk Factors Associated with Falls in Older Adults with Dementia: A Systematic Review

PubMed Central

Fernando, Eresha; Fraser, Michelle; Hendriksen, Jane; Kim, Corey H.

2017-01-01

Purpose: People with dementia fall more often than cognitively healthy older adults, but their risk factors are not well understood. A review is needed to determine a fall risk profile for this population. The objective was to critically evaluate the literature and identify the factors associated with fall risk in older adults with dementia. Methods: Articles published between January 1988 and October 2014 in EMBASE, PubMed, PsycINFO, and CINAHL were searched. Inclusion criteria were participants aged 55 years or older with dementia or cognitive impairment, prospective cohort design, detailed fall definition, falls as the primary outcome, and multi-variable regression analysis. Two authors independently reviewed and extracted data on study characteristics, quality assessment, and outcomes. Adjusted risk estimates were extracted from the articles. Results: A total of 17 studies met the inclusion criteria. Risk factors were categorized into demographic, balance, gait, vision, functional status, medications, psychosocial, severity of dementia, and other. Risk factors varied with living setting and were not consistent across all studies within a setting. Conclusion: Falls in older adults with dementia are associated with multiple intrinsic and extrinsic risk factors, some shared with older adults in general and others unique to the disease. Risk factors vary between community- and institution-dwelling samples of adults with dementia or cognitive impairment. PMID:28539696

Sleep and Cognitive Decline: A Strong Bidirectional Relationship. It Is Time for Specific Recommendations on Routine Assessment and the Management of Sleep Disorders in Patients with Mild Cognitive Impairment and Dementia.

PubMed

Guarnieri, Biancamaria; Sorbi, Sandro

2015-01-01

Sleep disturbances and disruption of the neural regulation of the sleep-wake rhythm appear to be involved in the cellular and molecular mechanisms of cognitive decline. Although sleep problems are highly prevalent in mild cognitive impairment (MCI) and many types of dementia, they have not been systematically investigated in the clinical setting and are often only investigated by sleep specialists upon individual request. This review discusses sleep disorders in the context of cognitive decline and provides an overview of the clinical diagnosis and management of these disorders in patients with dementia and MCI. Key Messages: Sleep disorders are largely underestimated and do not receive sufficient attention in the global management of dementia patients. Sleep disturbances have a significant impact on cognitive and physical functions in individuals with cognitive decline and may be associated with important psychological distress and depression. They are positively associated with the severity of behavioral problems and cognitive impairment. The recent recommendations by the Sleep Study Group of the Italian Dementia Research Association can be used as a guideline for the clinical assessment and management of sleep disorders in MCI and dementia patients. Sleep disorders should be carefully investigated using an in-depth sleep history, physical examination, questionnaires and clinical scales and should be validated with the support of a direct caregiver. The recommendations for older adults can be used as a framework to guide the diagnosis and treatment of sleep disorders in individuals with dementia and MCI. The management strategy should be based on the choice of different treatments for each sleep problem present in the same patient, while avoiding adverse interactions between treatments. © 2015 S. Karger AG, Basel.

Impact of TimeSlips, a Creative Expression Intervention Program, on Nursing Home Residents with Dementia and their Caregivers

ERIC Educational Resources Information Center

Fritsch, Thomas; Kwak, Jung; Grant, Stacey; Lang, Josh; Montgomery, Rhonda R.; Basting, Anne D.

2009-01-01

Purpose: Creative expression (CE) programs are emerging interventions to improve the quality of care and life of persons with dementia (PWDs) in long-term care settings. However, limited empirical evidence exists to support the effectiveness of these programs. Here, we report the findings from an assessment of the impact of TimeSlips (TS), a group…

Systematic review of the effect of psychological interventions on family caregivers of people with dementia.

PubMed

Selwood, A; Johnston, K; Katona, C; Lyketsos, C; Livingston, G

2007-08-01

Caregivers of people with dementia are at high risk of psychological morbidity and associated breakdown in care. Many psychologically based interventions have been designed to help caregivers of people with dementia. More work is needed to identify which, if any, are helpful for such caregivers. We conducted a systematic review of the immediate and long term efficacy of different types of psychological interventions for the psychological health of caregivers of people with dementia, using standardized criteria, to assist clinicians in implementing rational, evidence-based management recommendations. We reviewed studies examining the effects of any therapy derived from a psychological approach that satisfied pre-specified criteria. Using the Oxford Centre for Evidence-Based Medicine criteria we rated the quality of each study, extracted data and gave overall ratings to different types of intervention. We identified 244 references in our search of which 62 met our inclusion criteria. Our findings are limited by lack of good quality evidence, with only ten level 1 studies identified. We found excellent evidence for the efficacy of six or more sessions of individual behavioral management therapy centered on the care recipient's behavior in alleviating caregiver symptoms both immediately and for up to 32 months. Teaching caregivers coping strategies either individually or in a group also appeared effective in improving caregiver psychological health both immediately and for some months afterwards. Group interventions were less effective than individual interventions. Education about dementia by itself, group behavioral therapy and supportive therapy were not effective caregiver interventions.

Mindfulness and meditation: treating cognitive impairment and reducing stress in dementia.

PubMed

Russell-Williams, Jesse; Jaroudi, Wafa; Perich, Tania; Hoscheidt, Siobhan; El Haj, Mohamad; Moustafa, Ahmed A

2018-02-21

This study investigates the relationship between mindfulness, meditation, cognition and stress in people with Alzheimer's disease (AD), dementia, mild cognitive impairment and subjective cognitive decline. Accordingly, we explore how the use of meditation as a behavioural intervention can reduce stress and enhance cognition, which in turn ameliorates some dementia symptoms. A narrative review of the literature was conducted with any studies using meditation as an intervention for dementia or dementia-related memory conditions meeting inclusion criteria. Studies where moving meditation was the main intervention were excluded due to the possible confounding of exercise. Ten papers were identified and reviewed. There was a broad use of measures across all studies, with cognitive assessment, quality of life and perceived stress being the most common. Three studies used functional magnetic resonance imaging to measure functional changes to brain regions during meditation. The interventions fell into the following three categories: mindfulness, most commonly mindfulness-based stress reduction (six studies); Kirtan Kriya meditation (three studies); and mindfulness-based Alzheimer's stimulation (one study). Three of these studies were randomised controlled trials. All studies reported significant findings or trends towards significance in a broad range of measures, including a reduction of cognitive decline, reduction in perceived stress, increase in quality of life, as well as increases in functional connectivity, percent volume brain change and cerebral blood flow in areas of the cortex. Limitations and directions for future studies on meditation-based treatment for AD and stress management are suggested.

[Quality of life of people with severe dementia in nursing oases: empirical results and methodological implications].

PubMed

Brandenburg, H

2013-07-01

Nursing oases (NOs) are a variant of segregated care for people with severe dementia in nursing homes. They can be understood as a constant living arrangement in one room for 4-7 persons with a special care concept and environmental design. During the daytime nurses are permanently present. Quality of life (QoL) is the focus because the efficacy of medical and nursing interventions should include measurement of QoL. There is a controversy whether NOs are really different from the traditional caring settings in long-term care. Advocates see NOs as a substantial contribution to improve QoL, especially for people with severe dementia but critics fear a rollback to the era of multibed rooms in nursing homes and emphasize the risk of losing autonomy. This article is differentiated into four parts. Firstly, reasons are given why NOs are an option for a professional and adequate fulfillment of needs for people with severe dementia and a definition of NOs is given. Secondly, selected results of NOs studies in Germany are shown which have mainly documented positive effects. Thirdly, on the background of US American research into Special Care Units methodological questions are discussed. The focus is on designs and the utilization of standardized and non-standardized instruments. In the concluding remarks it is discussed whether QoL is an adequate indicator of a good life for people with severe dementia in long-term care.

Interventions to improve communication between people with dementia and nursing staff during daily nursing care: A systematic review.

PubMed

Machiels, Mariska; Metzelthin, Silke F; Hamers, Jan P H; Zwakhalen, Sandra M G

2017-01-01

To provide adequate nursing care it is important for nursing staff to communicate effectively with people with dementia. Due to their limited communication skills, people with dementia have difficulties in understanding communication and expressing themselves verbally. Nursing staff members often report communication difficulties with people with dementia, which emphasises the urgent need for interventions to improve their communication with people in this specific target group. To provide an up-to-date overview of communication interventions that are applicable during daily nursing care activities, irrespective of care setting, and to describe the effects on communication outcomes in people with dementia and nursing staff. Systematic literature review DATA SOURCES: The Cochrane Library, CINAHL, PsycINFO, and Pubmed databases were searched for all articles published until the 23rd of February 2016. Papers were included, if: (1) interventions focused on communication between nursing staff and people with dementia and were applicable during daily nursing care; (2) studies were (randomised) controlled trials; (3) papers were written in English, Dutch, or German. Data were extracted on content and communication outcomes of interventions, and on methodological quality of the studies. The data extraction form and methodological quality checklist were based on the Method Guidelines for Systematic Reviews for the Cochrane Back Review Group. Six studies on communication interventions were included. All of the studies incorporated a communication skills training for nursing staff with a broad range in frequency, duration and content. In addition, there was wide variation in the communication outcome measures used. Four studies measured non-verbal communication, all found positive effects on at least some of the communication outcomes. Four studies measured verbal communication, of which three found positive effects on at least one of the measured outcomes. Methodological quality assessment demonstrated a high risk of bias in five of the six studies. Few studies have been identified with wide variation in interventions and outcome measures. In addition, the methodological shortcomings make it difficult, to draw conclusions about the effectiveness. More research is needed to develop and evaluate communication interventions. Additionally, it is useful to reach consensus on defining and measuring communication. Copyright © 2017 Elsevier Ltd. All rights reserved.

Sundown Syndrome, Sleep Quality, and Walking Among Community-Dwelling People With Alzheimer Disease.

PubMed

Shih, Yen-Hua; Pai, Ming-Chyi; Huang, Ying-Che; Wang, Jing-Jy

2017-05-01

Sundown syndrome and sleep disturbances cause people with Alzheimer disease (PAD) and caregivers suffering. Studies have indicated that physical exercise could have a positive impact on sundown syndrome, yet no research has ever explored the relationship between walking and sundown syndrome. The aims of this study were to examine the relationship between sundown syndrome and sleep quality, and determine whether the severity of dementia, sleep quality, and weekly duration of walking influenced sundown syndrome, and to assess differences in sundown syndrome and sleep quality in relation to the accompanying walker and weekly duration of walking among people with Alzheimer disease living in the community. A cross-sectional observation study was conducted. A total 184 participants were recruited from dementia outpatient clinics of several hospitals and long-term care resource management centers in southern Taiwan. The Chinese version of the Cohen-Mansfield Agitation Inventory, Community form was used to assess sundown syndrome, and the Chinese version of the Pittsburgh Sleep Quality Index was used to measure sleep quality. Pearson correlation, multiple regression, and 1-way analysis of variance were performed for data analysis. The results indicated that sundown syndrome was significantly correlated with sleep quality (r = 0.374), whereas severity of dementia, sleep quality, and weekly duration of walking were influencing factors of sundown syndrome and accounted for a total of 24.8% of the variance (adjusted R 2  = 0.222, F 6,177  = 9.709). In addition, PAD who walked with relatives showed less sundown syndrome (F 3,180  = 4.435, P = .005) and better sleep quality (F 3,180  = 3.565, P = .015) compared with those walking with nonrelatives. Also, longer walking time led to less sundown syndrome (F 4,179  = 4.351, P = .002) and better sleep quality (F 4,179  = 3.592, P = .008). Advanced dementia, poor sleep quality, and shorter weekly duration of walking were the influencing factors of sundown syndrome. Walking with relatives and regular longer walking time could improve sleep quality and alleviate sundown syndrome. It is suggested that a well-designed walking intervention considering these factors could be an appropriate strategy to manage sundown syndrome and sleep quality for PAD and their caregivers. Copyright © 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

Understanding diagnosis and management of dementia and guideline implementation in general practice: a qualitative study using the theoretical domains framework.

PubMed

Murphy, Kerry; O'Connor, Denise A; Browning, Colette J; French, Simon D; Michie, Susan; Francis, Jill J; Russell, Grant M; Workman, Barbara; Flicker, Leon; Eccles, Martin P; Green, Sally E

2014-03-03

Dementia is a growing problem, causing substantial burden for patients, their families, and society. General practitioners (GPs) play an important role in diagnosing and managing dementia; however, there are gaps between recommended and current practice. The aim of this study was to explore GPs' reported practice in diagnosing and managing dementia and to describe, in theoretical terms, the proposed explanations for practice that was and was not consistent with evidence-based guidelines. Semi-structured interviews were conducted with GPs in Victoria, Australia. The Theoretical Domains Framework (TDF) guided data collection and analysis. Interviews explored the factors hindering and enabling achievement of 13 recommended behaviours. Data were analysed using content and thematic analysis. This paper presents an in-depth description of the factors influencing two behaviours, assessing co-morbid depression using a validated tool, and conducting a formal cognitive assessment using a validated scale. A total of 30 GPs were interviewed. Most GPs reported that they did not assess for co-morbid depression using a validated tool as per recommended guidance. Barriers included the belief that depression can be adequately assessed using general clinical indicators and that validated tools provide little additional information (theoretical domain of 'Beliefs about consequences'); discomfort in using validated tools ('Emotion'), possibly due to limited training and confidence ('Skills'; 'Beliefs about capabilities'); limited awareness of the need for, and forgetting to conduct, a depression assessment ('Knowledge'; 'Memory, attention and decision processes'). Most reported practising in a manner consistent with the recommendation that a formal cognitive assessment using a validated scale be undertaken. Key factors enabling this were having an awareness of the need to conduct a cognitive assessment ('Knowledge'); possessing the necessary skills and confidence ('Skills'; 'Beliefs about capabilities'); and having adequate time and resources ('Environmental context and resources'). This is the first study to our knowledge to use a theoretical approach to investigate the barriers and enablers to guideline-recommended diagnosis and management of dementia in general practice. It has identified key factors likely to explain GPs' uptake of the guidelines. The results have informed the design of an intervention aimed at supporting practice change in line with dementia guidelines, which is currently being evaluated in a cluster randomised trial.

Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial.

PubMed

Livingston, Gill; Barber, Julie; Rapaport, Penny; Knapp, Martin; Griffin, Mark; King, Derek; Livingston, Debbie; Mummery, Cath; Walker, Zuzana; Hoe, Juanita; Sampson, Elizabeth L; Cooper, Claudia

2013-10-25

To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Randomised, parallel group, superiority trial. Three mental health community services and one neurological outpatient dementia service in London and Essex, UK. 260 carers of family members with dementia. A manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers' stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs. Affective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer's disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale). 260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means -1.80 points (95% confidence interval -3.29 to -0.31; P=0.02) and absolute difference in means -2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there was a non-significant trend towards reduced case level anxiety (0.30, 0.08 to 1.05). Carers' quality of life was higher in the intervention group (difference in means 4.09, 95% confidence interval 0.34 to 7.83) but not for the recipient of care (difference in means 0.59, -0.72 to 1.89). Carers in the intervention group reported less abusive behaviour towards the recipient of care compared with those in the treatment as usual group (odds ratio 0.47, 95% confidence interval 0.18 to 1.23), although this was not significant. A manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia. The carers' quality of life also improved. Current Controlled Trials ISCTRN70017938.

Differences in quality of life in home-dwelling persons and nursing home residents with dementia - a cross-sectional study.

PubMed

Olsen, Christine; Pedersen, Ingeborg; Bergland, Astrid; Enders-Slegers, Marie-José; Jøranson, Nina; Calogiuri, Giovanna; Ihlebæk, Camilla

2016-07-11

Dementia often eventually leads to dependency on others and finally to residential care. However, in Norway about half of the dementia population lives at home, due to individual and political wishes. There is scarce and inconclusive knowledge of how living in a nursing home differs from living at home for persons with dementia (PWDs) with regard to their quality of life (QoL). The first aim of the study was therefore to compare QoL, cognitive and physical functions, social contacts, sleep patterns, physical activity levels, exposure to light, and medication of PWDs in nursing homes and home-dwelling PWDs, and whether living in nursing homes was associated with a lower QoL than living at home for PWDs. A second aim was to examine if possible differences between residencies in QoL were consistent over time. The cross-sectional study was based on baseline data from two RCT studies of PWDs. A total of 15 nursing homes with adapted units for PWDs and 23 adapted day care centres for home-dwelling PWDs recruited 78 and 115 participants respectively. Trained nurses scored sociodemographic data, level of dementia (on the Clinical Dementia Rating scale), amount of medication, and QoL (QUALID). Sleep patterns, physical activity levels, and light exposure were measured by actigraphy. A multiple regression analysis was used to test the association between residency and QoL. The association between residency and change in QoL over time was investigated by linear regression analysis of a subsample with follow-up data. Home-dwelling PWDs showed significantly higher QoL than PWDs in nursing homes. This difference was maintained even after stratifying on the severity of dementia. Home-dwelling PWDs with moderate dementia showed significantly less use of walking aids, more social contact, higher levels of activity and exposure to daylight, and less use of psychotropic medications. The regression model explained 28 % of the variance in QoL in persons with moderate dementia. However, only residency contributed significantly in the model. Residency also significantly predicted negative change over time in QoL. The study indicated that living at home as long as possible is not only desirable for economic or health political reasons but also is associated with higher QoL for persons with moderate dementia. More studies are needed to investigate how QoL could be increased for PWDs in nursing homes.

Sugar- and artificially-sweetened beverages and the risks of incident stroke and dementia: A prospective cohort study

PubMed Central

Pase, Matthew P.; Himali, Jayandra J.; Beiser, Alexa S.; Aparicio, Hugo J.; Satizabal, Claudia L.; Vasan, Ramachandran S.; Seshadri, Sudha; Jacques, Paul F.

2017-01-01

Background and purpose Sugar- and artificially-sweetened beverage intake have been linked to cardiometabolic risk factors, which increase the risk of cerebrovascular disease and dementia. We examined whether sugar- or artificially-sweetened beverage consumption were associated with the prospective risks of incident stroke or dementia in the community-based Framingham Heart Study Offspring cohort. Methods We studied 2888 participants aged over 45 for incident stroke (mean age 62 [SD, 9] years; 45% men) and 1484 participants aged over 60 for incident dementia (mean age 69 [SD, 6] years; 46% men). Beverage intake was quantified using a food frequency questionnaire at cohort examinations 5 (1991–1995), 6 (1995–1998) and 7 (1998–2001). We quantified recent consumption at examination 7 and cumulative consumption by averaging across examinations. Surveillance for incident events commenced at examination 7 and continued for 10-years. We observed 97 cases of incident stroke (82 ischemic) and 81 cases of incident dementia (63 consistent with Alzheimer’s disease [AD]). Results After adjustments for age, sex, education (for analysis of dementia), caloric intake, diet quality, physical activity and smoking, higher recent and higher cumulative intake of artificially-sweetened soft drinks were associated with an increased risk of ischemic stroke, all-cause dementia, and AD dementia. When comparing daily cumulative intake to <1 per week (reference), the hazard ratios were 2.96 (95% CI, 1.26–6.97) for ischemic stroke and 2.89 (95% CI, 1.18–7.07) for AD. Sugar-sweetened beverages were not associated with stroke or dementia. Conclusions Artificially-sweetened soft drink consumption was associated with a higher risk of stroke and dementia. PMID:28428346

Narratives of health and illness: Arts-based research capturing the lived experience of dementia.

PubMed

Moss, Hilary; O'Neill, Desmond

2017-01-01

Introduction This paper presents three artists' residencies in a geriatric medicine unit in a teaching hospital. The aim of the residencies was creation of new work of high artistic quality reflecting the lived experience of the person with dementia and greater understanding of service user experience of living with dementia. This paper also explores arts-based research methodologies in a medical setting. Method Arts-based research and narrative enquiry were the method used in this study. Artists had extensive access to service users with dementia, family carers and clinical team. Projects were created through collaboration between clinical staff, arts and health director, artist, patients and family carers. Each performance was accompanied by a public seminar discussing dementia. Evaluations were undertaken following each residency. The process of creating artistic responses to dementia is outlined, presented and discussed. Results The artworks were well received with repeat performances and exhibitions requested. Evaluations of each residency indicated increased understanding of dementia. The narratives within the artworks aided learning about dementia. The results are a new chamber music composition, a series of visual artworks created collaboratively between visual artist and patients and family carers and a dance film inspired by a dancer's residency, all created through narrative enquiry. These projects support the role of arts-based research as creative process and qualitative research method which contributes to illuminating and exploring the lived experience of dementia. The arts act as a reflective tool for learning and understanding a complex health condition, as well as creating opportunities for increased understanding and public awareness of dementia. Issues arising in arts-based research in medical settings are highlighted, including ethical issues, the importance of service user narrative and multidisciplinary collaboration in arts and health practice and research.

[Creative therapy options for patients with dementia--a systematic review].

PubMed

Schmitt, B; Frölich, L

2007-12-01

The specifics of creative therapies aim at activating the creative potential of the patients in the sense of acceptance, orientation and coping with their illness "dementia" and at improving their quality of life. Creative therapies in the treatment of dementia offer the advantage of working with these patients, whose cognition and often also verbal communication skills are affected in a nonverbal way. This article presents a systematic review of studies and case studies, which could be found on the subject of the implementation of active creative therapies "music-, art-, drama- and dance-therapy" within the following databases (05/05): Medline, Psyndex Plus, PsychInfo and Cochrane. The search terms used were: "Creativ* and therapy and dementia and (stud*)", "Dance therapy and dementia", "Music therapy and dementia", "Drama therapy and dementia" and "Art therapy and dementia". As a result of this search we found seven quantitative evaluated controlled studies, three prae-post comparisons and three qualitative evaluated studies which have been finished since 1998. All of these studies included groups of at least three participants. Further reviews are mentioned in this article. This survey of studies on creative therapies for patients with dementia shows positive effects like the improvement of interaction skills. The data supplied thus supports the approach of using creative therapies in order to help patients accept dementia as their illness and finally to cope with it. The methodical approach to the registration of the therapies' effects and process-orientated contents of the therapy create a field of tension, leading to the request for a further development and validation of instruments, which allow the quantitative evaluation of parameters like liveliness, agility and interaction skills.

Effect of the treatment of Type 2 diabetes mellitus on the development of cognitive impairment and dementia.

PubMed

Areosa Sastre, Almudena; Vernooij, Robin Wm; González-Colaço Harmand, Magali; Martínez, Gabriel

2017-06-15

Prevention of cognitive impairment and dementia is an important public health goal. Epidemiological evidence shows a relationship between cognitive impairment and Type 2 diabetes mellitus. The risk of dementia increases with duration of disease. This updated systematic review investigated the effect on cognitive function of the type of treatment and level of metabolic control in people with Type 2 diabetes. To assess the effects of different strategies for managing Type 2 diabetes mellitus on cognitive function and the incidence of dementia. We searched ALOIS (the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group (CDCIG)), the Cochrane Library, MEDLINE, Embase, PsycINFO, CINAHL and LILACS on 15 October 2016. ALOIS contains records from all major health care databases, (CENTRAL, MEDLINE, Embase, PsycINFO, CINAHL, LILACS), as well as from many trials' registers and grey literature sources. We included randomised controlled trials (RCTs) which compared two or more different treatments for Type 2 diabetes mellitus and in which cognitive function was measured at baseline and after treatment. Two review authors independently extracted data and assessed the quality of the included RCTs. We pooled data for comparable trials and estimated the effects of treatment by using risk ratios (RRs) and mean differences (MDs), according to the nature of the outcome. We assessed the quality of the evidence using GRADE methods. We identified seven eligible studies but only four provided data we could include in efficacy analyses. Two of these studies compared intensive versus standard glycaemic control and two compared different pharmacological treatments. All studies were at unclear risk of bias in at least two domains and one large study was at high risk of performance and detection bias.(a) Two studies with 13,934 participants at high cardiovascular risk provided efficacy data on intensive versus standard glycaemic control. A third study with 1791 participants provided additional data on hypoglycaemic episodes and mortality. There is probably no difference between treatment groups in the number of participants who decline by at least 3 points on the Mini-Mental State Examination (MMSE) over five years (RR 0.98, 95% CI 0.88 to 1.08; 1 study; n = 11,140; moderate-quality evidence); and there may also be little or no difference in the incidence of dementia (RR 1.27, 95% CI 0.87 to 1.85; 1 study; n = 11,140; low-quality evidence). From another study, there was probably little or no difference in MMSE score after 40 months (MD -0.01, 95% CI -0.18 to 0.16; 1 study; n = 2794; moderate quality evidence). Participants exposed to the intensive glycaemic control strategy probably experience more episodes of severe hypoglycaemia than those who have standard treatment (RR 2.18, 95% CI 1.52 to 3.14; 2 studies; n = 12,827; moderate-quality evidence). The evidence from these trials suggests that the intensity of glycaemic control may have little or no effect on all-cause mortality (RR 0.99, 95% CI 0.87 to 1.13; 3 studies; n = 15,888; low-quality evidence).(b) One study with 156 participants compared glibenclamide (glyburide) with repaglinide. There may be a small advantage of glibenclamide on global cognitive function measured with the MMSE after 12 months (MD -0.90, 95% CI -1.68 to -0.12; low-quality evidence). No data were reported on the incidence of dementia, hypoglycaemic events or all-cause mortality.(c) One study with 145 participants compared rosiglitazone plus metformin to glibenclamide (glyburide) plus metformin over 24 weeks. It reported only on cognitive subdomains and not on global cognitive function, incidence of MCI or dementia, hypoglycaemic events or all causes of mortality. We found no good evidence that any specific treatment or treatment strategy for Type 2 diabetes can prevent or delay cognitive impairment. The best available evidence related to the comparison of intensive with standard glycaemic control strategies. Here there was moderate-quality evidence that the strategies do not differ in their effect on global cognitive functioning over 40 to 60 months.

Optimizing Eating Performance for Older Adults With Dementia Living in Long-term Care: A Systematic Review.

PubMed

Liu, Wen; Galik, Elizabeth; Boltz, Marie; Nahm, Eun-Shim; Resnick, Barbara

2015-08-01

Review of research to date has been focusing on maintaining weight and nutrition with little attention on optimizing eating performance. To evaluate the effectiveness of interventions on eating performance for older adults with dementia in long-term care (LTC). A systematic review was performed. Five databases including Pubmed, Medline (OVID), EBM Reviews (OVID), PsychINFO (OVID), and CINAHL (EBSCOHost) were searched between January 1980 and June 2014. Keywords included dementia, Alzheimer, feed(ing), eat(ing), mealtime(s), oral intake, autonomy, and intervention. Intervention studies that optimize eating performance and evaluate change of self-feeding or eating performance among older adults (≥65 years) with dementia in LTC were eligible. Studies were screened by title and abstract, and full texts were reviewed for eligibility. Eligible studies were classified by intervention type. Study quality was accessed using the Quality Assessment Tool for Quantitative Studies, and level of evidence using the 2011 Oxford Centre for Evidence-Based Medicine (OCEBM) Levels of Evidence. Eleven intervention studies (five randomized controlled trials [RCTs]) were identified, and classified into four types: training program, mealtime assistance, environmental modification, and multicomponent intervention. The quality of the 11 studies was generally moderate (four studies were rated as strong, four moderate, and three weak in quality), with the main threats as weak designs, lack of blinding and control for confounders, and inadequate psychometric evidence for measures. Training programs targeting older adults (Montessori methods and spaced retrieval) demonstrated good evidence in decreasing feeding difficulty. Mealtime assistance offered by nursing staff (e.g., verbal prompts and cues, positive reinforcement, appropriate praise and encouragement) also showed effectiveness in improving eating performance. This review provided preliminary support for using training and mealtime assistance to optimize eating performance for older adults with dementia in LTC. Future effectiveness studies may focus on training nursing caregivers as interventionists, lengthening intervention duration, and including residents with varying levels of cognitive impairment in diverse cultures. The effectiveness of training combined with mealtime assistance may also be tested to achieve better resident outcomes in eating performance. © 2015 Sigma Theta Tau International.

Development and testing of a decision aid on goals of care for advanced dementia.

PubMed

Einterz, Seth F; Gilliam, Robin; Lin, Feng Chang; McBride, J Marvin; Hanson, Laura C

2014-04-01

Decision aids are effective to improve decision-making, yet they are rarely tested in nursing homes (NHs). Study objectives were to (1) examine the feasibility of a goals of care (GOC) decision aid for surrogate decision-makers (SDMs) of persons with dementia; and (2) to test its effect on quality of communication and decision-making. Pre-post intervention to test a GOC decision aid intervention for SDMs for persons with dementia in NHs. Investigators collected data from reviews of resident health records and interviews with SDMs at baseline and 3-month follow-up. Two NHs in North Carolina. Eighteen residents who were over 65 years of age, had moderate to severe dementia on the global deterioration scale (5, 6, or 7), and an English-speaking surrogate decision-maker. (1) GOC decision aid video viewed by the SDM and (2) a structured care plan meeting between the SDM and interdisciplinary NH team. Surrogate knowledge, quality of communication with health care providers, surrogate-provider concordance on goals of care, and palliative care domains addressed in the care plan. Eighty-nine percent of the SDMs thought the decision aid was relevant to their needs. After viewing the video decision aid, SDMs increased the number of correct responses on knowledge-based questions (12.5 vs 14.2; P < .001). At 3 months, they reported improved quality of communication scores (6.1 vs 6.8; P = .01) and improved concordance on primary goal of care with NH team (50% vs 78%; P = .003). The number of palliative care domains addressed in the care plan increased (1.8 vs 4.3; P < .001). The decision-support intervention piloted in this study was feasible and relevant for surrogate decision-makers of persons with advanced dementia in NHs, and it improved quality of communication between SDM and NH providers. A larger randomized clinical trial is underway to provide further evidence of the effects of this decision aid intervention. Copyright © 2014 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.

Goal-orientated cognitive rehabilitation for dementias associated with Parkinson's disease-A pilot randomised controlled trial.

PubMed

Hindle, John V; Watermeyer, Tamlyn J; Roberts, Julie; Brand, Andrew; Hoare, Zoe; Martyr, Anthony; Clare, Linda

2018-05-01

To examine the appropriateness and feasibility of cognitive rehabilitation for people with dementias associated with Parkinson's in a pilot randomised controlled study. This was a single-blind pilot randomised controlled trial of goal-oriented cognitive rehabilitation for dementias associated with Parkinson's. After goal setting, participants were randomised to cognitive rehabilitation (n = 10), relaxation therapy (n = 10), or treatment-as-usual (n = 9). Primary outcomes were ratings of goal attainment and satisfaction with goal attainment. Secondary outcomes included quality of life, mood, cognition, health status, everyday functioning, and carers' ratings of goal attainment and their own quality of life and stress levels. Assessments were at 2 and 6 months following randomisation. At 2 months, cognitive rehabilitation was superior to treatment-as-usual and relaxation therapy for the primary outcomes of self-rated goal attainment (d = 1.63 and d = 1.82, respectively) and self-rated satisfaction with goal attainment (d = 2.04 and d = 1.84). At 6 months, cognitive rehabilitation remained superior to treatment-as-usual (d = 1.36) and relaxation therapy (d = 1.77) for self-rated goal attainment. Cognitive rehabilitation was superior to treatment as usual and/or relaxation therapy in a number of secondary outcomes at 2 months (mood, self-efficacy, social domain of quality of life, carers' ratings of participants' goal attainment) and at 6 months (delayed recall, health status, quality of life, carer ratings of participants' goal attainment). Carers receiving cognitive rehabilitation reported better quality of life, health status, and lower stress than those allocated to treatment-as-usual. Cognitive rehabilitation is feasible and potentially effective for dementias associated with Parkinson's disease. Copyright © 2018 John Wiley & Sons, Ltd.

Association of Lower Spiritual Well-Being, Social Support, Self-Esteem, Subjective Well-Being, Optimism and Hope Scores With Mild Cognitive Impairment and Mild Dementia.

PubMed

Dos Santos, Sabrina B; Rocha, Gabrielli P; Fernandez, Liana L; de Padua, Analuiza C; Reppold, Caroline T

2018-01-01

Introduction: Positive psychology (PP) constructs contribute significantly to a better quality of life for people with various diseases. There are still few studies that have evaluated the evolution of these aspects during the progression of dementia. Objective: To compare the scores for self-esteem, life satisfaction, affect, spirituality, hope, optimism and perceived support network between elderly people with mild cognitive impairment (MCI), mild dementia and moderate dementia and control group. Methods: Cross-sectional study. The sample consisted of 66 healthy controls, 15 elderly people with MCI, 25 with mild dementia and 22 with moderate dementia matched by age, gender, and schooling. The instruments used were: Spirituality Self Rating Scale (SSRS), Rosenberg Self-Esteem Scale, Medical Outcomes Study's Social Support Scale, Life Satisfaction Scale (LSS), Positive and Negative Affect Schedule (PANAS), Revised Life Orientation Test (LOT-R), and Adult Dispositional Hope Scale (ADHS). Results: The scores for spiritual well-being, social support, self-esteem, life satisfaction, positive affect, optimism, negative affect, and hope differed significantly between the groups ( p < 0.05). The individuals with MCI and mild dementia had lower spiritual well-being, social support, self-esteem, life satisfaction, positive affect, optimism and hope scores, and higher negative affect scores compared with the controls. The scores for PP constructs did not differ between the group of people with moderate dementia and the control group. Conclusion: Dementia was found to impact several PP constructs in the early stages of the disease. For individuals with greater cognitive impairment, anosognosia appears to suppress the disease's impact on these constructs.

The association between dementia and epilepsy: A systematic review and meta-analysis.

PubMed

Subota, Ann; Pham, Tram; Jetté, Nathalie; Sauro, Khara; Lorenzetti, Diane; Holroyd-Leduc, Jayna

2017-06-01

Dementia is among the top 15 conditions with the most substantial increase in burden of disease in the past decade, and along with epilepsy, among the top 25 causes of years lived with disability worldwide. The epidemiology of dementia in persons with epilepsy, and vice versa, is not well characterized. The purpose of this systematic review was to examine the prevalence, incidence, and reported risk factors for dementia in epilepsy and epilepsy in dementia. Embase, PsycINFO, MEDLINE, and the Cochrane databases were searched from inception. Papers were included if they reported the incidence and/or prevalence of dementia and epilepsy. Two individuals independently performed duplicate abstract and full-text review, data extraction, and quality assessment. Random-effects models were used to generate pooled estimates when feasible. Of the 3,043 citations identified, 64 were reviewed in full text and 19 articles were included. The period prevalence of dementia ranged from 8.1 to 17.5 per 100 persons among persons with epilepsy (insufficient data to pool). The pooled period prevalence of epilepsy among persons with dementia was 5 per 100 persons (95% confidence interval [CI] 1-9) in population-based settings and 4 per 100 persons (95% CI 1-6) in clinic settings. There were insufficient data to report a pooled overall incidence rate and only limited data on risk factors. There are significant gaps in knowledge regarding the epidemiology of epilepsy in dementia and vice versa. Accurate estimates are needed to inform public health policy and prevention, and to understand health resource needs for these populations. Wiley Periodicals, Inc. © 2017 International League Against Epilepsy.

Music-based therapeutic interventions for people with dementia.

PubMed

van der Steen, Jenny T; van Soest-Poortvliet, Mirjam C; van der Wouden, Johannes C; Bruinsma, Manon S; Scholten, Rob Jpm; Vink, Annemiek C

2017-05-02

Dementia is a clinical syndrome with a number of different causes which is characterised by deterioration in cognitive, behavioural, social and emotional functions. Pharmacological interventions are available but have limited effect to treat many of the syndrome's features. Less research has been directed towards non-pharmacological treatments. In this review, we examined the evidence for effects of music-based interventions as a treatment. To assess the effects of music-based therapeutic interventions for people with dementia on emotional well-being including quality of life, mood disturbance or negative affect, behavioural problems, social behaviour, and cognition at the end of therapy and four or more weeks after the end of treatment. We searched ALOIS, the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group (CDCIG) on 14 April 2010 using the terms: music therapy, music, singing, sing, auditory stimulation. Additional searches were also carried out on 3 July 2015 in the major healthcare databases MEDLINE, Embase, psycINFO, CINAHL and LILACS; and in trial registers and grey literature sources. On 12 April 2016, we searched the major databases for new studies for future evaluation. We included randomized controlled trials of music-based therapeutic interventions (at least five sessions) for people with dementia that measured any of our outcomes of interest. Control groups either received usual care or other activities. Two reviewers worked independently to screen the retrieved studies against the inclusion criteria and then to extract data and assess methodological quality of the included studies. If necessary, we contacted trial authors to ask for additional data, including relevant subscales, or for other missing information. We pooled data using random-effects models. We included 17 studies. Sixteen studies with a total of 620 participants contributed data to meta-analyses. Participants in the studies had dementia of varying degrees of severity, but all were resident in institutions. Five studies delivered an individual music intervention; in the others, the intervention was delivered to groups of participants. Most interventions involved both active and receptive musical elements. The methodological quality of the studies varied. All were at high risk of performance bias and some were at high risk of detection or other bias. At the end of treatment, we found low-quality evidence that music-based therapeutic interventions may have little or no effect on emotional well-being and quality of life (standardized mean difference, SMD 0.32, 95% CI -0.08 to 0.71; 6 studies, 181 participants), overall behaviour problems (SMD -0.20, 95% CI -0.56 to 0.17; 6 studies, 209 participants) and cognition (SMD 0.21, 95% CI -0.04 to 0.45; 6 studies, 257 participants). We found moderate-quality evidence that they reduce depressive symptoms (SMD -0.28, 95% CI -0.48 to -0.07; 9 studies, 376 participants), but do not decrease agitation or aggression (SMD -0.08, 95% CI -0.29 to 0.14; 12 studies, 515 participants). The quality of the evidence on anxiety and social behaviour was very low, so effects were very uncertain. The evidence for all long-term outcomes was also of very low quality. Providing people with dementia with at least five sessions of a music-based therapeutic intervention probably reduces depressive symptoms but has little or no effect on agitation or aggression. There may also be little or no effect on emotional well-being or quality of life, overall behavioural problems and cognition. We are uncertain about effects on anxiety or social behaviour, and about any long-term effects. Future studies should employ larger sample sizes, and include all important outcomes, in particular 'positive' outcomes such as emotional well-being and social outcomes. Future studies should also examine the duration of effects in relation to the overall duration of treatment and the number of sessions.

Inclusion of ethical issues in dementia guidelines: a thematic text analysis.

PubMed

Knüppel, Hannes; Mertz, Marcel; Schmidhuber, Martina; Neitzke, Gerald; Strech, Daniel

2013-08-01

Clinical practice guidelines (CPGs) aim to improve professionalism in health care. However, current CPG development manuals fail to address how to include ethical issues in a systematic and transparent manner. The objective of this study was to assess the representation of ethical issues in general CPGs on dementia care. To identify national CPGs on dementia care, five databases of guidelines were searched and national psychiatric associations were contacted in August 2011 and in June 2013. A framework for the assessment of the identified CPGs' ethical content was developed on the basis of a prior systematic review of ethical issues in dementia care. Thematic text analysis and a 4-point rating score were employed to assess how ethical issues were addressed in the identified CPGs. Twelve national CPGs were included. Thirty-one ethical issues in dementia care were identified by the prior systematic review. The proportion of these 31 ethical issues that were explicitly addressed by each CPG ranged from 22% to 77%, with a median of 49.5%. National guidelines differed substantially with respect to (a) which ethical issues were represented, (b) whether ethical recommendations were included, (c) whether justifications or citations were provided to support recommendations, and (d) to what extent the ethical issues were explained. Ethical issues were inconsistently addressed in national dementia guidelines, with some guidelines including most and some including few ethical issues. Guidelines should address ethical issues and how to deal with them to help the medical profession understand how to approach care of patients with dementia, and for patients, their relatives, and the general public, all of whom might seek information and advice in national guidelines. There is a need for further research to specify how detailed ethical issues and their respective recommendations can and should be addressed in dementia guidelines. Please see later in the article for the Editors' Summary.

Inclusion of Ethical Issues in Dementia Guidelines: A Thematic Text Analysis

PubMed Central

Knüppel, Hannes; Schmidhuber, Martina; Neitzke, Gerald

2013-01-01

Background Clinical practice guidelines (CPGs) aim to improve professionalism in health care. However, current CPG development manuals fail to address how to include ethical issues in a systematic and transparent manner. The objective of this study was to assess the representation of ethical issues in general CPGs on dementia care. Methods and Findings To identify national CPGs on dementia care, five databases of guidelines were searched and national psychiatric associations were contacted in August 2011 and in June 2013. A framework for the assessment of the identified CPGs' ethical content was developed on the basis of a prior systematic review of ethical issues in dementia care. Thematic text analysis and a 4-point rating score were employed to assess how ethical issues were addressed in the identified CPGs. Twelve national CPGs were included. Thirty-one ethical issues in dementia care were identified by the prior systematic review. The proportion of these 31 ethical issues that were explicitly addressed by each CPG ranged from 22% to 77%, with a median of 49.5%. National guidelines differed substantially with respect to (a) which ethical issues were represented, (b) whether ethical recommendations were included, (c) whether justifications or citations were provided to support recommendations, and (d) to what extent the ethical issues were explained. Conclusions Ethical issues were inconsistently addressed in national dementia guidelines, with some guidelines including most and some including few ethical issues. Guidelines should address ethical issues and how to deal with them to help the medical profession understand how to approach care of patients with dementia, and for patients, their relatives, and the general public, all of whom might seek information and advice in national guidelines. There is a need for further research to specify how detailed ethical issues and their respective recommendations can and should be addressed in dementia guidelines. Please see later in the article for the Editors' Summary PMID:23966839

Knowledge management in dementia care networks: a qualitative analysis of successful information and support strategies for people with dementia living at home and their family caregivers.

PubMed

Heinrich, S; Laporte Uribe, F; Roes, M; Hoffmann, W; Thyrian, J R; Wolf-Ostermann, K; Holle, B

2016-02-01

Stakeholders involved in community dementia support services often work on their own and without coordination with other services. These circumstances can result in a lack of information and support for people with dementia and their family caregivers at home. To increase the coordination between existing support services, so-called 'Dementia Care Networks' (DCNs) have been established. Most of the tasks that are performed in DCNs are based on communication strategies. Therefore, knowledge management (KM) is a key process in these networks. However, few studies have focused on this topic. This study attempted to evaluate KM strategies in DCNs across Germany as part of the DemNet-D study. A qualitative interview study design was used. Qualitative data were collected during single and group interviews with key persons associated with thirteen DCNs. Interviews were audiotaped and transcribed, and a structured content analysis was conducted. The framework for the analysis was derived from a KM model. Information dissemination strategies for people with dementia and their informal caregivers based on actively established contacts appear to be more successful than passive strategies. General practitioners often play a key role as external gatekeepers in initiating contact between a network and a person affected by dementia. In this context, case managers can help integrate external stakeholders, such as general practitioners or pharmacists, into DCNs using different KM strategies. The systematic development of common objectives under an agency-neutral leadership seems to be an important aspect of successful KM within DCNs. The findings reported here can help DCNs optimize their KM strategies for generating tailored information and support services for people with dementia living at home and their family caregivers. In particular, the identified potential knowledge distribution barriers and facilitators will be of practical use to DCN stakeholders. Copyright © 2015 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.

[At-home music therapy intervention using video phone (Skype) for elderly people with dementia].

PubMed

Hori, Miyako; Iizuka, Mieko; Nakamura, Michikazu; Aiba, Ikuko; Saito, Yufuko; Kubota, Masakazu; Urabe, Mie; Kinoshita, Ayae

2014-12-01

There are various nonpharmacological therapies available for elderly people with dementia, and these can improve quality of life and the behavioral and psychological symptoms of dementia (BPSD) that appear throughout the progression of the disease. Since a substantial number of effects have been reported for music therapy, we focused on this nonpharmacological intervention. Generally, musical therapy is provided collectively in facilities. However, the music used in this context may not consider the preferences and music abilities of each person. Therefore, in this study we created made-to-order music CDs that accounted for each participant's musical preferences and abilities. Utilizing the CDs, we conducted an intervention study of music therapy using a video phone (Skype) that elderly people with dementia can use at home. An advantage of conducting music therapy for individuals with dementia using a video phone is that those who have difficulty going to the hospital or participating in dementia-related therapy groups can participate in therapy in a familiar place. The results of this intervention showed that participants demonstrated signs of improvement as measured by the smile degree(Smile scan)and Behavior Pathology in Alzheimer's Disease (BEHAVE-AD) scale.

Resident-Assisted Montessori Programming (RAMP): training persons with dementia to serve as group activity leaders.

PubMed

Camp, Cameron J; Skrajner, Michael J

2004-06-01

The purpose of this study was to determine the effects of an activity implemented by means of Resident-Assisted Montessori Programming (RAMP). Four persons with early-stage dementia were trained to serve as leaders for a small-group activity played by nine persons with more advanced dementia. Assessments of leaders' ability to learn the procedures of leading a group, as well as their satisfaction with this role, were taken, as were measures of players' engagement and affect during standard activities programming and RAMP activities. Leaders demonstrated the potential to fill the role of group activity leader effectively, and they expressed a high level of satisfaction with this role. Players' levels of positive engagement and pleasure during the RAMP activity were higher than during standard group activities. This study suggests that to the extent that procedural learning is available to persons with early-stage dementia, especially when they are assisted with external cueing, these individuals can successfully fill the role of volunteers when working with persons with more advanced dementia. This can provide a meaningful social role for leaders and increase access to high quality activities programming for large numbers of persons with dementia. Copyright 2004 The Gerontological Society of America

Dementia and sculpture-making: Exploring artistic responses of people with dementia.

PubMed

Chauhan, Sumita

2018-01-01

In its form, sculpture reveals not only the artist's self-expression but also the transformative qualities through which it influences our senses. Frequent interactions with sculpture can provide creative awareness, which in turn leads to a better understanding and appreciation of artistic expressions. This paper examines possible ways in which the creative potential of people with dementia can be explored through meaningful artistic engagement with sculpture-making processes. A study was conducted involving seven participants diagnosed with the early stages of dementia who engaged and experimented with different types of sculpture-making processes, from clay and papier mâché to virtual and digital sculptures. In the collective and collaborative environment of the group sessions, the creative responses of the participants to each process were unique. Each sculpture created by the participants enfolded their self-initiated ideas and stories reflecting the conscious expressions of their presence in a particular time and space. This paper argues that while cognitive impairment may affect the behavioural, visual and perceptual abilities of people with dementia, there is ample evidence to suggest that the viewing and making sculpture may influence the sensory involvement and consequently the imagination and creativity of people with early stage dementia.

Good days and bad days in dementia: a qualitative chart review of variable symptom expression.

PubMed

Rockwood, Kenneth; Fay, Sherri; Hamilton, Laura; Ross, Elyse; Moorhouse, Paige

2014-08-01

Despite its importance in the lived experience of dementia, symptom fluctuation has been little studied outside Lewy body dementia. We aimed to characterize symptom fluctuation in patients with Alzheimer's disease (AD) and mixed dementia. A qualitative analysis of health records that included notations on good days and bad days yielded 52 community-dwelling patients (women, n = 30; aged 39-91 years; mild dementia, n = 26, chiefly AD, n = 36). Good days/bad days were most often described as changes in the same core set of symptoms (e.g. less/more verbal repetition). In other cases, only good or only bad days were described (e.g., no bad days, better sense of humor on good days). Good days were typically associated with improved global cognition, function, interest, and initiation. Bad days were associated with frequent verbal repetition, poor memory, increased agitation and other disruptive behaviors. Clinically important variability in symptoms appears common in AD and mixed dementia. Even so, what makes a day "good" is not simply more (or less) of what makes a day "bad". Further investigation of the factors that facilitate or encourage good days and mitigate bad days may help improve quality of life for patients and caregivers.

Smart wireless continence management system for persons with dementia.

PubMed

Wai, Aung Aung Phyo; Fook, Victor Foo Siang; Jayachandran, Maniyeri; Biswas, Jit; Nugent, Chris; Mulvenna, Maurice; Lee, Jer-En; Kiat, Philp Yap Lian

2008-10-01

Incontinence is highly prevalent in the elderly population, especially in nursing home residents with dementia. It is a distressing and costly health problem that affects not only the patients but also the caregivers. Effective continence management is required to provide quality care, and to eliminate high labor costs and annoyances to the caregivers resulting from episodes of incontinence. This paper presents the design, development, and preliminary deployment of a smart wireless continence management system for dementia-impaired elderly or patients in institutional care settings such as nursing homes and hospitals. Specifically, the mote wireless platform was used to support the deployment of potentially large quantities of wetness sensors with wider coverage and with dramatically less complexity and cost. It consists of an intelligent signal relay mechanism so that the residents are free to move about in the nursing home or hospital and allows personalized continence management service. Preliminary results from a trial in a local nursing home are promising and can significantly improve the quality of care for patients.

Assistive technology for memory support in dementia.

PubMed

Van der Roest, Henriëtte G; Wenborn, Jennifer; Pastink, Channah; Dröes, Rose-Marie; Orrell, Martin

2017-06-11

The sustained interest in electronic assistive technology in dementia care has been fuelled by the urgent need to develop useful approaches to help support people with dementia at home. Also the low costs and wide availability of electronic devices make it more feasible to use electronic devices for the benefit of disabled persons. Information Communication Technology (ICT) devices designed to support people with dementia are usually referred to as Assistive Technology (AT) or Electronic Assistive Technology (EAT). By using AT in this review we refer to electronic assistive devices. A range of AT devices has been developed to support people with dementia and their carers to manage their daily activities and to enhance safety, for example electronic pill boxes, picture phones, or mobile tracking devices. Many are commercially available. However, the usefulness and user-friendliness of these devices are often poorly evaluated. Although reviews of (electronic) memory aids do exist, a systematic review of studies focusing on the efficacy of AT for memory support in people with dementia is lacking. Such a review would guide people with dementia and their informal and professional carers in selecting appropriate AT devices. Primary objectiveTo assess the efficacy of AT for memory support in people with dementia in terms of daily performance of personal and instrumental activities of daily living (ADL), level of dependency, and admission to long-term care. Secondary objectiveTo assess the impact of AT on: users (autonomy, usefulness and user-friendliness, adoption of AT); cognitive function and neuropsychiatric symptoms; need for informal and formal care; perceived quality of life; informal carer burden, self-esteem and feelings of competence; formal carer work satisfaction, workload and feelings of competence; and adverse events. We searched ALOIS, the Specialised Register of the Cochrane Dementia and Cognitive Improvement Group (CDCIG), on 10 November 2016. ALOIS is maintained by the Information Specialists of the CDCIG and contains studies in the areas of dementia prevention, dementia treatment and cognitive enhancement in healthy people. We also searched the following list of databases, adapting the search strategy as necessary: Centre for Reviews and Dissemination (CRD) Databases, up to May 2016; The Collection of Computer Science Bibliographies; DBLP Computer Science Bibliography; HCI Bibliography: Human-Computer Interaction Resources; and AgeInfo, all to June 2016; PiCarta; Inspec; Springer Link Lecture Notes; Social Care Online; and IEEE Computer Society Digital Library, all to October 2016; J-STAGE: Japan Science and Technology Information Aggregator, Electronic; and Networked Computer Science Technical Reference Library (NCSTRL), both to November 2016; Computing Research Repository (CoRR) up to December 2016; and OT seeker; and ADEAR, both to February 2017. In addition, we searched Google Scholar and OpenSIGLE for grey literature. We intended to review randomised controlled trials (RCTs) and clustered randomised trials with blinded assessment of outcomes that evaluated an electronic assistive device used with the single aim of supporting memory function in people diagnosed with dementia. The control interventions could either be 'care (or treatment) as usual' or non-technological psychosocial interventions (including interventions that use non-electronic assistive devices) also specifically aimed at supporting memory. Outcome measures included activities of daily living, level of dependency, clinical and care-related outcomes (for example admission to long-term care), perceived quality of life and well-being, and adverse events resulting from the use of AT; as well as the effects of AT on carers. Two review authors independently screened all titles and abstracts identified by the search. We identified no studies which met the inclusion criteria. This review highlights the current lack of high-quality evidence to determine whether AT is effective in supporting people with dementia to manage their memory problems.

Reminiscence therapy for dementia.

PubMed

Woods, B; Spector, A; Jones, C; Orrell, M; Davies, S

2005-04-18

Reminiscence Therapy (RT) involves the discussion of past activities, events and experiences with another person or group of people, usually with the aid of tangible prompts such as photographs, household and other familiar items from the past, music and archive sound recordings. Reminiscence groups typically involve group meetings in which participants are encouraged to talk about past events at least once a week. Life review typically involves individual sessions, in which the person is guided chronologically through life experiences, encouraged to evaluate them, and may produce a life story book. Family care-givers are increasingly involved in reminiscence therapy. Reminiscence therapy is one of the most popular psychosocial interventions in dementia care, and is highly rated by staff and participants. There is some evidence to suggest it is effective in improving mood in older people without dementia. Its effects on mood, cognition and well-being in dementia are less well understood. The objective of the review is to assess the effects of reminiscence therapy for older people with dementia and their care-givers. The trials were identified from a search of the Specialised Register of the Cochrane Dementia and Cognitive Improvement Group on 4 May 2004 using the term "reminiscence". The CDCIG Specialized Register contains records from all major health care databases (MEDLINE, EMBASE, PsycLIT, CINAHL) and many ongoing trials databases and is regularly updated. We contacted specialists in the field and also searched relevant Internet sites. We hand-searched Aging and Mental Health, the Gerontologist, Journal of Gerontology, Current Opinion in Psychiatry, Current Research in Britain: Social Sciences, British Psychological Society conference proceedings and Reminiscence database. Randomised controlled trials and quasi-randomized trials of reminiscence therapy for dementia. Two reviewers independently extracted data and assessed trial quality. Five trials are included in the review, but only four trials with a total of 144 participants had extractable data. The results were statistically significant for cognition (at follow-up), mood (at follow-up) and on a measure of general behavioural function (at the end of the intervention period). The improvement on cognition was evident in comparison with both no treatment and social contact control conditions. Care-giver strain showed a significant decrease for care-givers participating in groups with their relative with dementia, and staff knowledge of group members' backgrounds improved significantly. No harmful effects were identified on the outcome measures reported. Whilst four suitable randomized controlled trials looking at reminiscence therapy for dementia were found, several were very small studies, or were of relatively low quality, and each examined different types of reminiscence work. Although there are a number of promising indications, in view of the limited number and quality of studies, the variation in types of reminiscence work reported and the variation in results between studies, the review highlights the urgent need for more and better designed trials so that more robust conclusions may be drawn.

Connecting the person with dementia and family: a feasibility study of a telepresence robot

PubMed Central

2014-01-01

Background Maintenance of communication is important for people with dementia living in long-term care. The purpose of this study was to assess the feasibility of using “Giraff”, a telepresence robot to enhance engagement between family and a person with dementia living in long-term care. Methods A mixed-methods approach involving semi-structured interviews, call records and video observational data was used. Five people with dementia and their family member participated in a discussion via the Giraff robot for a minimum of six times over a six-week period. A feasibility framework was used to assess feasibility and included video analysis of emotional response and engagement. Results Twenty-six calls with an average duration of 23 mins took place. Residents showed a general state of positive emotions across the calls with a high level of engagement and a minimal level of negative emotions. Participants enjoyed the experience and families reported that the Giraff robot offered the opportunity to reduce social isolation. A number of software and hardware challenges were encountered. Conclusions Participants perceived this novel approach to engage families and people with dementia as a feasible option. Participants were observed and also reported to enjoy the experience. The technical challenges identified have been improved in a newer version of the robot. Future research should include a feasibility trial of longer duration, with a larger sample and a cost analysis. PMID:24456417

Encouraging Innovation for Assistive Health Technologies in Dementia: Barriers, Enablers and Next Steps to Be Taken.

PubMed

Egan, Kieren J; Pot, Anne Margriet

2016-04-01

Innovative Assistive Health Technology (AHT) has the potential to improve the quality of life for people with dementia or their families. Although development is in its preliminary stages, research shows first promising results. Despite such progress, we are still to observe widespread integration of technology into communities. If society is to benefit from innovative AHT to assist people with dementia and their caregivers, we must deepen our understanding of the needs, barriers, and enablers of innovative AHT. In March 2015, multinational focus groups were undertaken to identify the barriers, enablers, stakeholder actions, and a future perspective for the use of AHT in dementia. This exploratory study was carried out in preparation of the first World Health Organization Ministerial Conference on the Global Action against Dementia. The focus group study identified that innovative AHT for people with dementia and caregivers is at an early stage of development; however, there is substantial promise across a range of different care needs. Focus group discussions identified internationally relevant barriers and enablers for the development of innovative AHT centring on an improved understanding for needs in dementia. There are many diverse barriers to the development of innovative AHT but none that appear insurmountable regarding the enablers that were mentioned. There is now an overriding imperative for a systematic, coordinated multistakeholder approach with the needs of people with dementia and their caregivers as the centerpiece. Copyright © 2016. Published by Elsevier Inc.

[Characterisation and prevalence of the psychological and behavioural symptoms in patients with dementia].

PubMed

López-Pousa, S; Vilalta-Franch, J; Garre-Olmo, J; Pons, S; Cucurella, M G

To assess the prevalence of behavioural and psychological symptoms (BPS's) in patients with dementia in Spain and their dementia-specific characteristics. A cross-sectional and retrospective study of 1025 patients from 52 specialized dementia care units using the Neuropsychiatric Inventory (NPI). Patients with a probable diagnosis of Alzheimer's disease (AD), dementia with Lewy bodies (DLB) and Parkinson's disease and dementia (PDD) were selected for BPS's characterisation. The global prevalence of BPS's was 66.7% (684 patients; 95% CI = 63.8-69.6%). BPS's were under-diagnosed in one third of cases. A total of 668 patients with NPI of 4 or superior and a diagnosis of AD (n = 380; 56.8%), DLB (n = 156; 23.3%) and PDD (n = 132; 19.7%) had a NPI mean of 21.1 (SD = 14.7), 25.6 (SD = 13.9) and 21.8 (SD = 14.2), respectively. Apathy, depression and anxiety were the most common BPS's. Delusions and hallucinations were significantly more prevalent in DLB. Dementia severity was correlated with the global NPI value and with all the sub-items, but anxiety and euphoria. The presence of agitation, euphoria or lability was associated with a deficient therapeutic fulfillment. A high prevalence of non-diagnosed BPS's was observed in the studied population. This has serious negative consequences for the quality of life of patients and their social environment. Therefore we propose an active search and subsequent correct treatment of BPS's in all patients with dementia.

Frames and counter-frames giving meaning to dementia: a framing analysis of media content.

PubMed

Van Gorp, Baldwin; Vercruysse, Tom

2012-04-01

Media tend to reinforce the stigmatization of dementia as one of the most dreaded diseases in western society, which may have repercussions on the quality of life of those with the illness. The persons with dementia, but also those around them become imbued with the idea that life comes to an end as soon as the diagnosis is pronounced. The aim of this paper is to understand the dominant images related to dementia by means of an inductive framing analysis. The sample is composed of newspaper articles from six Belgian newspapers (2008-2010) and a convenience sample of popular images of the condition in movies, documentaries, literature and health care communications. The results demonstrate that the most dominant frame postulates that a human being is composed of two distinct parts: a material body and an immaterial mind. If this frame is used, the person with dementia ends up with no identity, which is in opposition to the Western ideals of personal self-fulfilment and individualism. For each dominant frame an alternative counter-frame is defined. It is concluded that the relative absence of counter-frames confirms the negative image of dementia. The inventory might be a help for caregivers and other professionals who want to evaluate their communication strategy. It is discussed that a more resolute use of counter-frames in communication about dementia might mitigate the stigma that surrounds dementia. Copyright © 2012 Elsevier Ltd. All rights reserved.

Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study.

PubMed

Chester, Helen; Clarkson, Paul; Hughes, Jane; Russell, Ian; Beresford, Joan; Davies, Linda; Jolley, David; Peconi, Julie; Poland, Fiona; Roberts, Chris; Sutcliffe, Caroline; Challis, David

2017-07-01

Dementia is a major health problem with a growing number of people affected by the condition, both directly and indirectly through caring for someone with dementia. Many live at home but little is known about the range and intensity of the support they receive. Previous studies have mainly reported on discrete services within a single geographical area. This paper presents a protocol for study of different services across several sites in England. The aim is to explore the presence, effects, and cost-effectiveness of approaches to home support for people in later stage dementia and their carers. This is a prospective observational study employing mixed methods. At least 300 participants (people with dementia and their carers) from geographical areas with demonstrably different ranges of services available for people with dementia will be selected. Within each area, participants will be recruited from a range of services. Participants will be interviewed on two occasions and data will be collected on their characteristics and circumstances, quality of life, carer health and burden, and informal and formal support for the person with dementia. The structured interviews will also collect qualitative data to explore the perceptions of older people and carers. This national study will explore the components of appropriate and effective home support for people with late stage dementia and their carers. It aims to inform commissioners and service providers across health and social care.

Potential of telepresence robots to enhance social connectedness in older adults with dementia: an integrative review of feasibility.

PubMed

Moyle, Wendy; Arnautovska, Urska; Ownsworth, Tamara; Jones, Cindy

2017-12-01

Socially assistive robots are increasingly used as a therapeutic tool for people with dementia, as a means to improve quality of life through social connection. This paper presents a mixed-method integrative review of telepresence robots used to improve social connection of people with dementia by enabling real-time communication with their carers. A systematic search of Medline, ProQuest, PubMed, Scopus, Web of Science, CINAHL, EMBASE, and the Cochrane library was conducted to gather available evidence on the use of telepresence robots, specifically videoconferencing, to improve social connectedness, in people with dementia. A narrative synthesis was used to analyze the included studies. A review of 1,035 records, identified four eligible peer-reviewed publications, reporting findings about three different mobile telepresence robots. The study designs included qualitative and mixed-methods approaches, focusing primarily on examining the feasibility and acceptability of the telepresence robots within the context of dementia care. These studies reported both positive outcomes of using telepresence robots to connect people with dementia to others, as well as barriers, such as a lack of experience in using a robot and technological issues. Although limited, the current literature suggests that telepresence robots have potential utility for improving social connectedness of people with dementia and their carers. However, more systematic feasibility studies are needed to inform the development of telepresence robots followed by clinical trials to establish efficacy within dementia care.

[Family companions. New facets in accompanying relatives caring for people with dementia].

PubMed

Kricheldorff, Cornelia; Brijoux, Thomas

2016-04-01

Support and relief options in the context of homecare settings where people with dementia are cared for by friends or relatives have become highly differentiated; however, there are significant shortcomings in networking between the various types of offers within the context of mixed care (Pflegemix). Family caregivers often feel overwhelmed and find it difficult to identify and utilize the appropriate forms and services for their individual situation. Against this background companion models seem to be an appropriate solution to provide psychosocial support for caring families and to function in the role of bridge building in the assistance system. Within the framework of the Future Workshop Dementia (Zukunftswerkstatt Demenz) program funded by the German Federal Ministry of Health during the time period 2012-2015, the new intervention was developed in the family companion for dementia in rural areas (FABEL) project carried out by volunteers. These volunteers take up the needs of caring families for a low-threshold support structure and promote networking among the various groups of participants in individual homecare settings. The preparatory training for the volunteers, which is the focus of this article, provides special knowledge about dementia and the basic principles of systemic understanding of the typical dynamics in caring families. In the model phase the newly developed training program was aimed at qualified volunteers trained in the logistics of the model project Care Companion (Pflegebegleitung), which was successfully established from 2003 to 2008 in more than 100 pilot locations throughout Germany and is now integrated into the healthcare system. This proven model is linked to the new qualification and consists of 68 units involving thematic modules of knowledge about dementia and systemic solution-oriented thinking, for networking and the development of an understanding of the personal role. During the 3-year project period 27 volunteers became qualified and accompanied at least 73 families in rural areas, which was the special focus of the model project. The developed qualification enabled the volunteers to carry out the activities in a very relationship-oriented way and in a direct form of communication with the family carers and also to encourage self-care activities. This led to a significant improvement in the health-related quality of life (QoL) of family carers and stabilized the homecare setting. As part of a health economic model calculation on the effects of the new approach, the pecuniary gains outweighed the costs caused by the qualification. The concept of family companions (Familienbegleiter) has proven to be a cost-covering model of an effective intervention based on the needs of caring families, which should become more widespread in the future.