Sample records for dementia care program
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A disease management program for families of persons in Hong Kong with dementia.
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.
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Montessori-based dementia care.
Cline, Janet
2006-10-01
Montessori-based Dementia Care is an approach used in Alzheimer's care that does not involve chemical or physical restraints. This program works by giving the elder with Alzheimer/Dementia a purpose by getting them involved. When staff/families care for a confused Alzheimer/Dementia patient, who is having behaviors, the Montessori program teaches them to look at what is causing the behavior. When assessing the elder to determine what is causing the behavior, the goal is to find the answer, but the answer cannot be dementia. The goal of the program is to bring meaning to the life of an Alzheimer/Dementia elder.
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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.
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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
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Quality of Care Provided by a Comprehensive Dementia Care Comanagement Program.
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.
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Feasibility and Utility of Online Dementia Care Training for Hospital Staff
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
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Franzmann, J; Haberstroh, J; Pantel, J
2016-04-01
Improvement of communication skills in nursing home staff is key to provide better care for dementia patients and decrease occupational mental stress. An innovative train-the-trainer program to improve and maintain professional caregivers' social competencies in nursing home dementia care is described. Over a period of 6 months, a group of 6 senior staff members were qualified as program trainers (multiplicators) for the TANDEM training program, which qualified them to design, deliver, and evaluate training sessions that foster specific social competencies in dementia care. In a subsequent intervention study with 116 geriatric caregivers in 14 nursing homes, training was provided either by multiplicators (intervention group) or directly by project coworkers (control group). Participants in both groups improved their dementia-specific communication skills. In a follow-up survey, the intervention group also reported lasting reductions in mental stressors at work (p < 0.05) and occupational mental stress (p < 0.01) compared with the control group. The qualification of staff members in German nursing homes to be multiplicators for the TANDEM train-the-trainer program for dementia-specific communication skills has a beneficial influence on social competencies, mental stressors at work, and occupational mental stress of staff who care for dementia patients and may contribute to a sustainable implementation of dementia-specific social competencies.
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Coordinated Care Management For Dementia In A Large, Academic Health System
Tan, Zaldy S.; Jennings, Lee; Reuben, David
2014-01-01
Alzheimer’s disease and other dementias are chronic, incurable diseases that require coordinated care that addresses the medical, behavioral, and social aspects of the disease. With funding from the Center for Medicare and Medicaid Innovation (the Innovation Center), we launched a dementia care program in which a nurse practitioner acting as a dementia care manager worked with primary care physicians to develop and implement a dementia care plan that offers training and support to caregivers, manages care transitions, and facilitates access to community-based services. Post-visit surveys showed high levels of caregiver satisfaction. As program enrollment grows, outcomes will be tracked based on the triple aim developed by the Institute for Healthcare Improvement and adopted by the Centers for Medicare and Medicaid Services: better care, better health, and lower cost and utilization. The program, if successful at achieving the triple aim, may serve as a national model for how dementia and other chronic diseases can be managed in partnership with primary care practices. The program may also inform policy and reimbursement decisions for the recently released transitional care management codes and the complex chronic care management codes to be released by Medicare in 2015. PMID:24711323
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The costs of caring: medical costs of Alzheimer's disease and the managed care environment.
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.
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Lathren, Christine R; Sloane, Philip D; Hoyle, Joseph D; Zimmerman, Sheryl; Kaufer, Daniel I
2013-12-10
Primary care physicians routinely provide dementia care, but may lack the clinical skills and awareness of available resources to provide optimal care. We conducted a community-based pilot dementia training intervention designed to both improve clinical competency and increase utilization of local dementia care services. Physicians (N = 29) and affiliated staff (N = 24) participated in a one-day training program on dementia screening, diagnosis and management that included direct engagement with local support service providers. Questionnaires about their dementia care competency and referral patterns were completed before and 6 months after the training intervention. Physicians reported significantly higher overall confidence in their dementia care competency 6 months post-training compared to pre-training. The largest reported improvements were in their ability to educate patients and caregivers about dementia and making appropriate referrals to community care services. Participants also reported markedly increased use of cognitive screening tools in providing care. Community service providers recorded approximately 160 physician-initiated referrals over a 2 year-period post-training, compared to few beforehand. Combining a targeted physician practice-based educational intervention with community service engagement improves dementia care competency in clinicians and promotes linkages between clinical and community dementia care providers.
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Impacts of Art Museum-Based Dementia Programming on Participating Care Partners
ERIC Educational Resources Information Center
Lamar, Katherine L.; Luke, Jessica J.
2016-01-01
The purpose of this study was to describe the impacts of art museum-based dementia programming on participating care partners (CPs). Data were collected through telephone interviews with 29 caregivers who participated in one of three dementia programs: "here: now" at The Frye Art Museum, Seattle; "Meaningful Moments" at the…
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Mavandadi, Shahrzad; Wray, Laura O; DiFilippo, Suzanne; Streim, Joel; Oslin, David
2017-09-01
To evaluate whether a community-based, telephone-delivered, brief patient/caregiver-centered collaborative dementia care management intervention is associated with improved caregiver and care recipient (CR) outcomes. Longitudinal program evaluation of a clinical intervention; assessments at baseline and 3- and 6-month follow-up. General community. Caregivers (N = 440) of older, community-dwelling, low-income CRs prescribed a psychotropic medication by a primary care provider who met criteria for dementia and were enrolled in the SUpporting Seniors Receiving Treatment And INtervention (SUSTAIN) program for older adults. Dementia care management versus clinical evaluation only. Perceived caregiving burden and caregiver general health (primary outcomes); CR neuropsychiatric symptoms and caregiver distress in response to CRs' challenging dementia-related behaviors (secondary outcomes). Caregivers were, on average, 64.0 (SD: 11.8) years old and 62.6% provided care for the CR for 20 or more hours per week. The majority of the sample was female (73.2%), non-Hispanic White (90.2%), and spousal caregivers (72.5%). Adjusted longitudinal models of baseline and 3- and 6-month data suggest that compared with caregivers receiving clinical evaluation only, caregivers receiving care management reported greater reductions in burden over time. Subgroup analyses also showed statistically significant reductions in caregiver-reported frequency of CR dementia-related behaviors and caregiver distress in response to those symptoms at 3-month follow-up. A community-based, telephone-delivered care management program for caregivers of individuals with dementia is associated with favorable caregiver and CR-related outcomes. Findings support replication and further research in the impact of tailored, collaborative dementia care management programs that address barriers to access and engagement. Published by Elsevier Inc.
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Gillies, Leslie; Coker, Esther; Pizzacalla, Anne; Montemuro, Maureen; Suva, Grace; McLelland, Victoria
2016-01-01
Education is needed for enhanced capacity of acute hospitals to provide dementia care. A nonrandomized controlled, repeated-measures design was used to evaluate a dementia education program delivered to an intervention group (IG, n = 468), compared to a wait-listed group (n = 277), representing separate sites of a multisite hospital. Participants completed self-efficacy for dementia and satisfaction measures and provided written descriptions of dementia care collected at baseline, postintervention (IG only), and at 8-week follow-up. Oral narratives were gathered from IG participants 8 weeks postintervention. The IG demonstrated significant improvement in self-efficacy scores from baseline to immediately postintervention (P < .001), sustained at 8 weeks. There were no changes from baseline to 8 weeks postintervention evident in the wait-listed group (P = .21). Intervention group participants described positive impacts including implementation of person-centered care approaches. Implementation of dementia care education programs throughout hospital settings is promising for the enhancement of dementia care. PMID:27659392
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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.
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Psychiatric Aspects of Dementia
Onyike, Chiadi U.
2016-01-01
Purpose of Review: The psychiatric aspects of dementia are increasingly recognized as significant contributors to distress, disability, and care burden, and, thus, are of increasing interest to practicing neurologists. This article examines how psychiatric disorders are entwined with dementia and describes the predictive, diagnostic, and therapeutic implications of the psychiatric symptoms of dementia. Recent Findings: Psychiatric disorders, particularly depression and schizophrenia, are associated with higher risk for late-life dementia. Psychiatric phenomena also define phenotypes such as frontotemporal dementia and dementia with Lewy bodies, cause distress, and amplify dementia-related disabilities. Management requires a multidisciplinary team, a problem-solving stance, programs of care, and pharmacologic management. Recent innovations include model programs that provide structured problem-solving interventions and tailored in-home care. Summary: There is new appreciation of the complexity of the relationship between psychiatric disorders and dementia as well as the significance of this relationship for treatment, community services, and research. PMID:27042910
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Integrating Behavioral Psychology Services into Adult Day Programming for Individuals with Dementia
ERIC Educational Resources Information Center
LeBlanc, Linda A.
2010-01-01
Many individuals with dementia and problem behavior are served in nursing home settings long before health issues necessitate constant medical care. Alternative community-based adult day health care programs allow individuals with dementia to remain in their home with their families at a substantially reduced cost; however, many adult day programs…
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Direct Care Worker Training to Respond to the Behavior of Individuals With Dementia
Gaugler, Joseph E.; Hobday, John V.; Robbins, Joyce C.; Barclay, Michelle P.
2016-01-01
Only a handful of online training programs are available for direct care workers (DCWs) to acquire the strategic skills needed to improve dementia care in instances of challenging or inappropriate behavior. Utilizing pre- and post-test data from a convenience sample of 40 DCWs, the present study sought to determine (a) whether DCWs’ knowledge of responding to dementia-related behavior increased following participation in the CARES® Dementia-Related Behavior™ Online Training Program (or CARES® Behavior) and (b) if CARES® Behavior was acceptable and useful. The average number of correct scores on a dementia care knowledge measure was significantly higher among DCWs after viewing the online modules when compared with pre-test scores (p < .01). Descriptive empirical and open-ended data also suggested that the interactive, “real-world” content of CARES® Behavior was feasibly delivered online, acceptable, and may influence how DCWs deliver clinical care to individuals with dementia-related behavior. PMID:26894209
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Service learning at dementia care programs: an orientation and training program.
Lambert-Shute, Jennifer J; Jarrott, Shannon E; Fruhauf, Christine A
2004-01-01
The present paper describes a project that addresses the unique challenge service-learners face at dementia care programs. The project was conducted in conjunction with two courses on aging that offer students a service-learning (S-L) option at a university adult day service (ADS) program that accepts service-learners from these courses. The intervention consisted of two elements: (a) an orientation and follow- up sessions in which students learned about the causes of dementia, the behavioral characteristics exhibited by persons with dementia, and the best methods of interacting effectively with cognitively impaired persons; and (b) a structured scrapbook project for service-learners to exercise their new knowledge and skills. The authors designed the project to increase students' comfort in the dementia care setting and to facilitate students' knowledge of the elderly. The following sections describe the project and its procedures, benefits, and challenges. Recommendations for continuing the project and for adapting the project to other dementia sites are provided.
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Vandepitte, Sophie; Van Den Noortgate, Nele; Putman, Koen; Verhaeghe, Sofie; Annemans, Lieven
2016-12-02
Frequent hospitalization and permanent nursing home placement not only affect the well-being of persons with dementia, but also place great financial strain on society. Therefore, it is important to create effective strategies to support informal caregivers so that they can continue to perform their demanding role. Preliminary qualitative evidence suggests that community-based respite services can actually be important for caregivers, and that the level of evidence should be further established in terms of effectiveness. Therefore, a comparative study to assess the effectiveness and cost-effectiveness of an in-home respite care program will be initiated. This manuscript described a quasi-experimental study to assess (cost)-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. 124 informal caregivers and persons with dementia will be included in the intervention group and will receive an in-home respite care program by an organization called Baluchon Alzheimer. 248 dyads will be included in the control group and will receive standard dementia care. The primary outcome is caregiver burden. Secondary outcomes are: quality of life of caregivers, frequency of behavioral problems of persons with dementia and the reactions of caregivers to those problems, intention to institutionalize the care-recipient, time to nursing home placement, resource use of the care-recipient, and willingness to pay for in-home respite care. When the trial demonstrates a difference in outcomes between both groups, within-trial and modeled cost-effectiveness analyses will be conducted in a separate economic evaluation plan to evaluate possible cost-effectiveness of the in-home respite care program compared to the control group receiving standard dementia care. Finally, the model based cost-effectiveness analyses will allow to extrapolate effects over a longer time horizon than the duration of the trial. This study will have great added value because to date no studies measured effectiveness and cost-effectiveness of an in-home respite care program of the Baluchon type. Results of this trial can thus give much more insight in potential benefits and disadvantages of community-based respite care. Conclusions based on this trial can help policy-makers in elaborating future directions of dementia care. Clinicaltrials.gov Identifier NCT02630446 .
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ERIC Educational Resources Information Center
Lee, Linda; Weston, W. Wayne; Hillier, Loretta M.
2013-01-01
Introduction: Primary care is challenged to meet the needs of patients with dementia. A training program was developed to increase capacity for dementia care through the development of Family Health Team (FHT)-based interprofessional memory clinics. The interprofessional training program consisted of a 2-day workshop, 1-day observership, and 2-day…
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Wang, Feilong; Xiao, Lily Dongxia; Wang, Kaifa; Li, Min; Yang, Yanni
2017-12-01
Community nurses play a crucial role in early detection and timely diagnosis of dementia. However, they are usually not prepared for the role through their formal education, particularly in low- and middle-income countries due to undeveloped nursing curriculum in dementia care. This paper describes a two-arm cluster-randomized controlled trial to improve community nurses' knowledge, attitudes, and practice changes using an innovative and interactive mobile phone applet-based activity in primary care settings. The intervention sites received dementia-specific training and control sites received care training for older people with disability. Both groups completed measures assessing dementia knowledge, attitudes, and intentions to make changes to achieve early detection and a timely diagnosis of dementia immediately after training and at 3-month follow-up. The intervention group provided feedback immediately after training and at 3-month follow-up. The main results show that the intervention group demonstrated significant improvement in dementia knowledge and attitudes from baseline immediately after training and at the 3-month follow-up. The intervention group also showed more intentions to make changes to achieve early detection of dementia. Feedback suggested the program was well-received. Overall, the program showed acceptability and feasibility in improving nurses' dementia knowledge, attitudes, and intentions to achieve early detection of dementia. Copyright © 2017 Elsevier Inc. All rights reserved.
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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
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Orsulic-Jeras, S; Judge, K S; Camp, C J
2000-02-01
Sixteen residents in long-term care with advanced dementia (14 women; average age = 88) showed significantly more constructive engagement (defined as motor or verbal behaviors in response to an activity), less passive engagement (defined as passively observing an activity), and more pleasure while participating in Montessori-based programming than in regularly scheduled activities programming. Principles of Montessori-based programming, along with examples of such programming, are presented. Implications of the study and methods for expanding the use of Montessori-based dementia programming are discussed.
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Empowering Staff in Dementia Long-Term Care: Towards a More Supportive Approach to Interventions
ERIC Educational Resources Information Center
Figueiredo, Daniela; Barbosa, Ana; Cruz, Joana; Marques, Alda; Sousa, Liliana
2013-01-01
This pilot-study aimed to assess a psychoeducational program for staff in care homes. The program was designed to increase knowledge regarding dementia care, promote skills to integrate motor and multisensory stimulation in daily care, and develop coping strategies to manage emotional work-related demands. Six staff members received eight…
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Fortinsky, Richard H; Gitlin, Laura N; Pizzi, Laura T; Piersol, Catherine Verrier; Grady, James; Robison, Julie T; Molony, Sheila
2016-07-01
Dementia is the leading cause of loss of independence in older adults worldwide. In the U.S., approximately 15 million family members provide care to relatives with dementia. This paper presents the rationale and design for a translational study in which an evidence-based, non-pharmacologic intervention for older adults with dementia and family caregivers (CGs) is incorporated into a publicly-funded home care program for older adults at risk for nursing home admission. The 4-month Care of Persons with Dementia in their Environments (COPE) intervention is designed to optimize older adults' functional independence, and to improve CG dementia management skills and health-related outcomes. COPE features 10 in-home occupational therapy visits, and 1 in-home visit and 1 telephone contact by an advanced practice nurse. COPE was deemed efficacious in a published randomized clinical trial. In the present study, older adults with dementia enrolled in the Connecticut Home Care Program for Elders (CHCPE) and their CGs are randomly assigned to receive COPE plus their ongoing CHCPE services, or to continue receiving CHCPE services only. The primary outcome for older adults with dementia is functional independence; secondary outcomes are activity engagement, quality of life, and prevention or alleviation of neuropsychiatric symptoms. CG outcomes include perceived well-being and confidence in using activities to manage dementia symptoms. Translational outcomes include net financial benefit of COPE, and feasibility and acceptability of COPE implementation into the CHCPE. COPE has the potential to improve health-related outcomes while saving Medicaid waiver and state revenue-funded home care program costs nationwide. Copyright © 2016 Elsevier Inc. All rights reserved.
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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…
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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.
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ERIC Educational Resources Information Center
Teri, Linda; McKenzie, Glenise; Logsdon, Rebecca G.; McCurry, Susan M.; Bollin, Salli; Mead, Jennifer; Menne, Heather
2012-01-01
The need for evidence-based non-pharmacological community programs to improve care of older adults with dementia is self-evident, considering the sheer numbers of affected individuals; the emotional, physical, and financial toll on affected individuals and their caregivers; the impact on our health care system; and the growing availability of…
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Skrajner, Michael J; Camp, Cameron J
2007-01-01
Six persons in the early to middle stages of dementia ("leaders") were trained in Resident-Assisted Montessori Programming (RAMP) to lead a reading activity for 22 persons with more advanced dementia ("participants") in an adult day health center (ADHC) and a special care unit (SCU) in a skilled nursing facility. Researchers assessed the leaders' abilities to learn and follow the procedures of leading a group, as well as their satisfaction with their roles. In addition, participants' engagement and affect were measured, both during standard activities programming and during client-led activities. Results of this study suggest that persons with dementia can indeed successfully lead small group activities, if several important prerequisites are met. Furthermore, the engagement and affect of participants was more positive in client-led activities than in standard activities programming.
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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.
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Models of home care services for persons with dementia: a narrative review.
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.
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ERIC Educational Resources Information Center
Morgan, Debra G.; Kosteniuk, Julie G.; O'Connell, Megan E.; Dal Bello-Haas, Vanina; Stewart, Norma J.; Karunanayake, Chandima
2016-01-01
An understanding of the specific dementia learning needs of home care staff is needed to plan relevant continuing education (CE) programs and supports. The study's objective was to examine frequency and perceived competence in performing 20 dementia-related work activities, and identify CE priorities among home care staff. A cross-sectional survey…
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[Development of a program theory as a basis for the evaluation of a dementia special care unit].
Adlbrecht, Laura; Bartholomeyczik, Sabine; Mayer, Hanna
2018-06-01
Background: An existing dementia special care unit should be evaluated. In order to build a sound foundation of the evaluation a deep theoretical understanding of the implemented intervention is needed, which has not been explicated yet. One possibility to achieve this is the development of a program theory. Aim: The aim is to present a method to develop a program theory for the existing living and care concept of the dementia special care unit, which is used in a larger project to evaluate the concept theory-drivenly. Method: The evaluation is embedded in the framework of van Belle et al. (2010) and an action model and a change model (Chen, 2015) is created. For the specification of the change model the contribution analysis (Mayne, 2011) is applied. Data were collected in workshops with the developers and the nurses of the dementia special care unit and a literature research concerning interventions and outcomes was carried out. The results were synthesized in a consens workshop. Results: The action model describes the interventions of the dementia special care unit, the implementers, the organization and the context. The change model compromises the mechanisms through which interventions achieve outcomes. Conclusions: The results of the program theory can be employed to choose data collection methods and instruments for the evaluation. On the basis of the results of the evaluation the program theory can be refined and adapted.
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End-of-life care for advanced dementia patients in residential care home-a Hong Kong perspective.
Luk, James K H; Chan, Felix H W
2017-08-28
Dementia will become more common as the population ages. Advanced dementia should be considered as a terminal illnesses and end-of-life (EOL) care is very much needed for this disease group. Currently, the EOL services provided to this vulnerable group in Hong Kong, especially those living in residential care homes, is limited. The usual practice of residential care homes is to send older residents with advanced dementia to acute hospitals when they are sick, irrespective of their wish, premorbid status, diagnoses and prognosis. This may not accord with what the patients perceive to be a "good death". There are many barriers for older people to die in place, both at home and at the residential care home. In the community, to enhance EOL care to residential care home for the elderly (RCHE) residents, pilot EOL program had been carried out by some Community Geriatric Assessment Teams. Since 2015, the Hospital Authority funded program "Enhance Community Geriatric Assessment Team Support to End-of-life Patients in Residential Care Homes for the Elderly" has been started. In the program, advance care planning (ACP), Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) (non-hospitalized) order will be established and the program will be expected to cover all clusters in Hong Kong by 2018/2019. In hospital setting, EOL clinical plan and EOL ward in geriatric step-down hospitals may be able to improve the quality of death of older patients. In Sep 2015, the Hospital Authority Guidelines on Life-Sustaining Treatment in the Terminally Ill was updated. Amongst other key EOL issues, careful (comfort) hand feeding was mentioned in the guideline. Other new developments include the possible establishment of enduring power of attorney for health care decision and enhancement of careful hand feeding amongst advanced dementia patients in RCHEs.
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Unmet Needs of Caregivers of Patients Referred to a Dementia Care Program
Jennings, Lee A.; Reuben, David B.; Evertson, Leslie Chang; Serrano, Katherine S.; Ercoli, Linda; Grill, Joshua; Chodosh, Joshua; Tan, Zaldy; Wenger, Neil S.
2014-01-01
Background/Objectives Caregiver strain and low self-efficacy for managing dementia-related problems are common among those caring for patients with dementia, but the level of unmet need and relation to provider type has not been well characterized. Design Cross-sectional observational cohort Setting Urban academic medical center Participants Caregivers of community-dwelling adults with dementia referred to the program Measurements Caregivers were surveyed and completed the Patient Health Questionnaire (PHQ-9) about themselves, the Modified Caregiver Strain Index, the Neuropsychiatric Inventory Questionnaire, which measures patient symptom severity and related caregiver distress, and a 9-item caregiver self-efficacy scale developed for the study. Results Of 307 patient and caregiver dyads surveyed over a one year period, 32% of caregivers reported confidence in managing dementia-related problems, 19% knew how to access community services to help provide care, and 28% agreed the patient’s provider helped them work through dementia care problems. Thirty-eight percent reported high levels of caregiver strain, and 15% reported moderate to severe depressive symptoms. Caregivers of patients referred by geriatricians more often reported having a healthcare professional to help work through dementia care problems than those referred by internists, family physicians, or other specialists, but self-efficacy did not differ. Low caregiver self-efficacy was associated with higher caregiver strain, more caregiver depressive symptoms, and caring for a patient with more severe behavioral symptoms. Conclusion Most caregivers perceived inadequate support from the patient’s provider in managing dementia-related problems, reported strain, and had low confidence in managing caregiving. New models of care are needed to address the complex care needs of patients with dementia and their caregivers. PMID:25688604
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Correlates of Caregiver Participation in a Brief, Community-Based Dementia Care Management Program.
Mavandadi, Shahrzad; Patel, Samir; Benson, Amy; DiFilippo, Suzanne; Streim, Joel; Oslin, David
2017-11-10
The evidence base for dementia care management interventions for informal caregivers (CGs) is strong, yet enrollment and sustained engagement in academic and community-based research trials is low. This study sought to examine rates and correlates of participation in a community-based, telephone-delivered dementia care management program designed to address logistic and practical barriers to participation in CG trials and services. Participants included 290 CGs of older, community-dwelling, low-income care recipients (CRs) who met criteria for enrollment in a collaborative dementia care management program that provides assessment, psychosocial support and education, and connection to community resources via telephone. Cross-sectional analyses examined the association between CG-related (e.g., financial status, relationship to CR, caregiving burden) and CR-related (e.g., functional limitations, symptom severity) factors and CG enrollment and engagement. The majority of CGs were non-Hispanic White, female, financially stable, and adult children of the CRs. Over half of CGs lived with the CR and provided 20 or more hours of care per week. Roughly half of CGs refused care management services. Adjusted logistic regression models revealed that perceived caregiving burden and financial status were related to initial enrollment and engagement in services once enrolled, respectively. A significant proportion of CGs refuse free, convenient, evidence-based dementia care management services, underscoring the need for further examination of correlates of program acceptance. Nonetheless, community-based programs that address barriers may improve enrollment and engagement rates among CGs, including those who are especially vulnerable to negative CG and CR outcomes. Published by Oxford University Press on behalf of The Gerontological Society of America 2016. This work is written by (a) US Government employee(s) and is in the public domain in the US.
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Stakeholder Perspectives on Policies to Support Family Caregivers of Older Adults with Dementia
ERIC Educational Resources Information Center
Putnam, Michelle; Pickard, Joseph G.; Rodriguez, Carroll; Shear, Erin
2010-01-01
Persons with dementia are often excluded from consumer-directed home- and community-based service programs because they cannot direct their own care. Surrogates are permitted in some states, thereby allowing program participation. This study explored family caregiver perspectives on policies that support family needs related to providing care to…
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Henwood, Timothy; Neville, Christine; Baguley, Chantelle; Beattie, Elizabeth
2017-09-01
Pilot work by our group has demonstrated that aquatic exercise has valuable functional and psychosocial benefits for adults living in the residential aged care setting with dementia. The aim of the currents study was to advance this work by delivering the Watermemories Swimming Club aquatic exercise program to a more representative population of older, institutionalized adults with dementia. The benefits of 12 weeks of twice weekly participation in the Watermemories Swimming Club aquatic exercise program were assessed among an exercise and usual care control group of residential aged care adults with advanced dementia. A battery of physical and psychosocial measures were collected before and after the intervention period, and program implementation was also investigated. Seven residential aged care facilities of 24 approached, agreed to participate and 56 residents were purposefully allocated to exercise or control. Twenty-three participants per group were included in the final analysis. Both groups experienced decreases in skeletal muscle index and lean mass (p < 0.001), but exercise stifled losses in muscle strength and transition into sarcopenic. Behavioral and psychological symptoms of dementia and activities of daily living approached significance (p = 0.06) with positive trends observed across other psychosocial measures. This study demonstrates the value of exercise participation, and specifically aquatic exercise in comparison to usual care for older, institutionalized adults with advanced dementia. However, it also highlights a number of barriers to participation. To overcome these barriers and ensure opportunity to residents increased provider and sector support is required.
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Amjad, Halima; Wong, Stephanie K; Roth, David L; Huang, Jin; Willink, Amber; Black, Betty S; Johnston, Deirdre; Rabins, Peter V; Gitlin, Laura N; Lyketsos, Constantine G; Samus, Quincy M
2018-02-01
To investigate effects of a novel dementia care coordination program on health services utilization. A total of 303 community-dwelling adults aged ≥70 with a cognitive disorder in Baltimore, Maryland (2008-2011). Single-blind RCT evaluating efficacy of an 18-month care coordination intervention delivered through community-based nonclinical care coordinators, supported by an interdisciplinary clinical team. Study partners reported acute care/inpatient, outpatient, and home- and community-based service utilization at baseline, 9, and 18 months. From baseline to 18 months, there were no significant group differences in acute care/inpatient or total outpatient services use, although intervention participants had significantly increased outpatient dementia/mental health visits from 9 to 18 months (p = .04) relative to controls. Home and community-based support service use significantly increased from baseline to 18 months in the intervention compared to control (p = .005). While this dementia care coordination program did not impact acute care/inpatient services utilization, it increased use of dementia-related outpatient medical care and nonmedical supportive community services, a combination that may have helped participants remain at home longer. Future care model modifications that emphasize delirium, falls prevention, and behavior management may be needed to influence inpatient service use. © Health Research and Educational Trust.
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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.
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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…
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Implementing Innovative Models of Dementia Care: The Healthy Aging Brain Center
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
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ERIC Educational Resources Information Center
Maiden, Robert J.; And Others
Caring for a family member with dementia is a major source of stress for the caregiver. To assess the impact of caring for an impaired family member and to evaluate the effectiveness of intervention programs, 34 caregivers of relatives with dementia completed an amended form of the Philadelphia Geriatric Center's Caregiver Survey and two…
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Hazzan, Afeez Abiola; Humphrey, Janis; Kilgour-Walsh, Laurie; Moros, Katherine L.; Murray, Carmen; Stanners, Shannon; Montemuro, Maureen; Giangregorio, Aidan; Papaioannou, Alexandra
2016-01-01
Background Engaging with art can be valuable for persons living with dementia. ‘Artful Moments’ was a collaborative project undertaken by the Art Gallery of Hamilton and the Behavioural Health Program at Hamilton Health Sciences that sought to develop and implement a program of arts-based activities for persons in the middle-to-late stages of dementia who exhibit behavioural symptoms and for their accompanying care partners. Methods This pilot study employed a qualitative descriptive design. Eight participants were observed during multiple art sessions to evaluate their level of engagement in the program. Care partners also completed a questionnaire describing their experience. Qualitative content analysis was used to identify themes. Results For program participants, factors that promoted continued interest and engagement in art included: care partner involvement, group activities, opportunities to share opinions, validation of their personhood, and increased engagement over time. Care partners observed improvements in participants’ creativity, communication, relationship forming, and task accomplishment, and some reported reduced stress. Conclusions ‘Artful Moments’ promoted engagement and expression in persons in the middle-to-late stages of dementia, as well as having benefits for their care partners. Limitations of the study included a small convenience sample drawn from one hospital setting. PMID:27403209
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Financial Care for Older Adults With Dementia.
Pan, Xi; Lee, Yeonjung; Dye, Cheryl; Roley, Laurie Theriot
2017-06-01
This article describes an examination of the sociodemographic characteristics of adult children, particularly Baby Boomer caregivers, who provide financial care to older parents with dementia. The sample including 1,011adult children dementia caregivers aged 50 to 64 years is selected from a nationally representative sample in the 2010 Health and Retirement Study. Exact logistic regression revealed that race, provision of financial assistance to caregiver children, and the number of their children are significantly associated with financial caregiving of parents. Non-White caregivers are more likely to provide financial care to their parents or parents-in-law with dementia; those who have more children and provide financial assistance to their children are less likely to provide financial care to parents with dementia. The current findings present valuable new information on the sociodemographic characteristics of adult children who provide financial assistance to parents with dementia and inform research, programs, and services on dementia caregiving.
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Jeon, Yun-Hee; Clemson, Lindy; Naismith, Sharon L; Mowszowski, Loren; McDonagh, Niki; Mackenzie, Margaret; Dawes, Caitlin; Krein, Luisa; Szanton, Sarah L
2017-08-14
Psychological, neurological, and social impairments caused by dementia may limit the person's everyday living and experiences, but their capacity to enjoy a meaningful life is still retained. Increasingly, evidence has been shown the importance of reablement approaches to care in maximizing the older person's independence, health, and well-being through increased engagement in their daily, physical, social, and community activities. However, there is a major knowledge gap in providing reablement for people living with dementia. We describe one case of a client with moderate dementia and her daughter carer who participated as a dyad in a person centered, interdisciplinary, and reablement program called I-HARP (Interdisciplinary home-based reablement program). I-HARP is designed to improve functional capacity of those community dwelling, older people living with dementia, and other health conditions. In this paper, we discussed key contributions that such a reablement approach to care can make to optimizing the social health of people living with dementia.
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Well-Chosen Objects Support Well-Being for People with Dementia and Their Care Partners
ERIC Educational Resources Information Center
Halpin-Healy, Carolyn
2017-01-01
Arts & Minds programs aim to promote well-being for people with dementia and their care partners. Educators must balance the needs of participants with the given conditions of display in the museum. While connection to the art historical canon is a consideration for program planning, the choice of artworks for contemplation and dialogue…
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Clemson, Lindy; Laver, Kate; Jeon, Yun-Hee; Comans, Tracy A; Scanlan, Justin; Rahja, Miia; Culph, Jennifer; Low, Lee-Fay; Day, Sally; Cations, Monica; Crotty, Maria; Kurrle, Susan; Piersol, Catherine; Gitlin, Laura N
2018-05-09
There are effective non-pharmacological treatment programs that reduce functional disability and changed behaviours in people with dementia. However, these programs (such as the Care of People with dementia in their Environments (COPE) program) are not widely available. The primary aim of this study is to determine the strategies and processes that enable the COPE program to be implemented into existing dementia care services in Australia. This study uses a mixed methods approach to test an implementation strategy. The COPE intervention (up to ten consultations with an occupational therapist and up to two consultations with a nurse) will be implemented using a number of strategies including planning (such as developing and building relationships with dementia care community service providers), educating (training nurses and occupational therapists in how to apply the intervention), restructuring (organisations establishing referral systems; therapist commitment to provide COPE to five clients following training) and quality management (coaching, support, reminders and fidelity checks). Qualitative and quantitative data will contribute to understanding how COPE is adopted and implemented. Feasibility, fidelity, acceptability, uptake and service delivery contexts will be explored and a cost/benefit evaluation conducted. Client outcomes of activity engagement and caregiver wellbeing will be assessed in a pragmatic pre-post evaluation. While interventions that promote independence and wellbeing are effective and highly valued by people with dementia and their carers, access to such programs is limited. Barriers to translation that have been previously identified are addressed in this study, including limited training opportunities and a lack of confidence in clinicians working with complex symptoms of dementia. A strength of the study is that it involves implementation within different types of existing services, such as government and private providers, so the study will provide useful guidance for further future rollout. 16 February 2017; ACTRN12617000238370 .
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Hong, Hyun Hwa; Gu, Mee Ock
2018-04-01
We developed and tested the effects of a coping skill training program for caregivers in feeding difficulty among older adults with dementia in long-term care facilities. A non-equivalent control group pretest-posttest design was used. The subjects comprised 34 caregivers (experimental group: 17, control group: 17) and 40 older adults with dementia (experimental group: 20, control group: 20). The developed program was delivered in 4-hour sessions over 6 weeks (including 2 weeks of lectures and lab practice on feeding difficulty coping skills, and 4 weeks of field practice). Data were collected before, immediately after, and 4 weeks after the program (January 3 to April 6, 2016). The data were analyzed using t-test and repeated measures ANOVA using SPSS/WIN 20.0. Compared to their counterparts in the control group, caregivers in the experimental group showed a significantly greater improvement in feeding knowledge and feeding behavior, while older adults with dementia showed greater improvements in feeding difficulty and Body Mass Index. The study findings indicate that this coping skill training program for caregivers in feeding difficulty is an effective intervention for older adults with dementia in long-term care facilities. © 2018 Korean Society of Nursing Science.
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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.
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Kaisey, Marwa; Mittman, Brian; Pearson, Marjorie; Connor, Karen I; Chodosh, Joshua; Vassar, Stefanie D; Nguyen, France T; Vickrey, Barbara G
2012-10-01
Care management approaches have been proven to improve outcomes for patients with dementia and their family caregivers (dyads). However, acceptance of services in these programs is incomplete, impacting effectiveness. Acceptance may be related to dyad as well as healthcare system characteristics, but knowledge about factors associated with program acceptance is lacking. This study investigates patient, caregiver, and healthcare system characteristics associated with acceptance of offered care management services. This study analyzed data from the intervention arm of a cluster randomized controlled trial of a comprehensive dementia care management intervention. There were 408 patient-caregiver dyads enrolled in the study, of which 238 dyads were randomized to the intervention. Caregiver, patient, and health system factors associated with participation in offered care management services were assessed through bivariate and multivariate regression analyses. Out of the 238 dyads, 9 were ineligible for this analysis, leaving data of 229 dyads in this sample. Of these, 185 dyads accepted offered care management services, and 44 dyads did not. Multivariate analyses showed that higher likelihood of acceptance of care management services was uniquely associated with cohabitation of caregiver and patient (p < 0.001), lesser severity of dementia (p = 0.03), and higher patient comorbidity (p = 0.03); it also varied across healthcare organization sites. Understanding factors that influence care management participation could result in increased adoption of successful programs to improve quality of care. Using these factors to revise both program design as well as program promotion may also benefit external validity of future quality improvement research trials. Copyright © 2011 John Wiley & Sons, Ltd.
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Camp, Cameron J; Lee, Michelle M
2011-12-12
Montessori-based activities for persons with dementia have been used to successfully provide opportunities for programming between older adults and preschool children in shared site. intergenerational care programs. Such intergenerational programming allows older adults with dementia to fulfill roles of teacher or mentor to younger children or as collaborative workmates for persons with more advanced dementia while providing children with positive one-on-one interactions with older adults. We review several studies using this approach, describe characteristics of the programs, participants and results obtained and provide recommendations for those interested in extending this line of work.
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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.
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Houser, Winona S; George, Daniel R; Chinchilli, Vernon M
2014-04-01
To evaluate whether involvement in TimeSlips, a creative storytelling program, reduced mood and behavioral symptoms as well as psychotropic medication use in persons with dementia. A cluster-randomized pilot study compared two discrete dementia care units in one nursing home. The control cohort (N = 10) received standard-of-care activity programming, and the intervention cohort (N = 10) received standard-of-care plus two one-hour TimeSlips sessions per week for six weeks. Data on mood and behavioral symptoms and psychotropic drug prescriptions were collected, and within-group and between-group comparisons were performed. Between-group comparisons did not reveal statistically significant differences in mood and behavioral symptoms. No differences in psychotropic drug prescriptions were found. Larger trials of longer duration are needed to determine whether involvement in TimeSlips reduces mood and behavioral symptoms that compromise quality of life for persons with dementia. Copyright © 2014 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.
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Chao, Hui-Chen; Yang, Ya-Ping; Huang, Mei-Chih; Wang, Jing-Jy
2016-01-01
Appropriate communication skills are essential for understanding patient needs, particularly those of patients with dementia. Assessing health care providers' competence in communicating with patients with dementia is critical for planning a communication education program. However, no formally established scale can be used. The purpose of the current study was to develop a valid and reliable instrument for determining the communication competence of health care providers with patients with dementia. Through use of a literature review and previous clinical experience, an initial 28-item scale was developed to assess the frequency of use of each item by health care providers. Fourteen items were extracted and three factors were distinguished. Results indicated that the internal consistency reliability of the 14-item scale was 0.84. Favorable convergent and discriminant validities were reached. The communication competence scale provides administrators or educators with a useful tool for assessing communication competence of health care providers when interacting with patients with dementia so a suitable education program can be planned and implemented. Copyright 2016, SLACK Incorporated.
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Skrajner, Michael J; Haberman, Jessica L; Camp, Cameron J; Tusick, Melanie; Frentiu, Cristina; Gorzelle, Gregg
2014-03-01
Previous research has demonstrated that persons with early to moderate stage dementia are capable of leading small group activities for persons with more advanced dementia. In this study, we built upon this previous work by training residents in long-term care facilities to fill the role of group activity leaders using a Resident-Assisted Programming (RAP) training regimen. There were two stages to the program. In the first stage, RAP training was provided by researchers. In the second stage, RAP training was provided to residents by activities staff members of long-term care facilities who had been trained by researchers. We examine the effects of RAP implemented by researchers and by activities staff member on long-term care resident with dementia who took part in these RAP activities. We also examined effects produced by two types of small group activities: two Montessori-based activities and an activity which focuses on persons with more advanced dementia, based on the work of Jitka Zgola. Results demonstrate that levels of positive engagement seen in players during RAP (resident-led activities) were typically higher than those observed during standard activities programming led by site staff. In general, Montessori-Based Dementia Programming® produced more constructive engagement than Zgola-based programming (ZBP), though ZBP did increase a positive form of engagement involving observing activities with interest. In addition, RAP implemented by activities staff members produced effects that were, on the whole, similar to those produced when RAP was implemented by researchers. Implications of these findings for providing meaningful social roles for persons with dementia residing in long-term care, and suggestions for further research in this area, are discussed.
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Leadership: a central tenet for postgraduate dementia services curricula development in Australia.
Angus, Jocelyn
2009-04-01
In the next decades of the twenty-first century, the global aging of populations will challenge every nation's ability to provide leadership by qualified health professionals to reshape and improve health care delivery systems. The challenge for educators is to design and deliver courses that will give students the knowledge and skills they need to fill that leadership role confidently in dementia care services. This paper explores the ways in which a curriculum can develop graduates who are ready to become leaders in shaping their industry. The Master of Health Science-Aged Services (MHSAS) program at Victoria University, Melbourne, Australia is applied as a case study to describe the process by which the concept of leadership is applied as the key driver in curriculum development, teaching practices and learning outcomes. Evaluation instruments employed in a variety of purposes including teaching, curriculum planning and unit appraisal are discussed. Challenges for the future are proposed including the need for postgraduate programs in dementia to seek stronger national and international benchmarks and associations with other educational institutions to promote leadership and a vision of what is possible and desirable in dementia care provision. In the twenty-first century, effective service provision in the aged health care sector will require postgraduate curricula that equip students for dementia care leadership. The MHSAS program provides an established template for such curricula.
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Elder abuse and dementia: a review of the research and health policy.
Dong, XinQi; Chen, Ruijia; Simon, Melissa A
2014-04-01
Older adults with dementia may be at high risk for abuse, but the topic has not been well studied. We conducted a literature review to examine the relationships between elder abuse and dementia. We found that psychological abuse was the most common form of abuse among older adults, with estimates of its prevalence ranging from 27.9 percent to 62.3 percent. Physical abuse was estimated to affect 3.5-23.1 percent of older adults with dementia. We also found that many older adults experienced multiple forms of abuse simultaneously, and the risk of mortality from abuse and self-neglect may be higher in older adults with greater levels of cognitive impairment. We summarize programs and policies related to the abuse of older adults with dementia, including adult protective services, mandatory elder abuse reporting, and the Long-Term Care Ombudsman Program. We also summarize aspects of the National Alzheimer's Project Act, the Older Americans Act, and the Elder Justice Act. In spite of a recent increase in research and policy developments on elder abuse, challenges such as insufficient funding, limited knowledge about elder abuse, a lack of funding for the implementation of federal and state programs relevant to elder abuse and dementia, and a lack of dementia-specific training for front-line health care staff persist. Stronger programs targeting the well-being of older adults with dementia are needed.
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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.
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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…
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Camp, Cameron J.; Lee, Michelle M.
2012-01-01
Montessori-based activities for persons with dementia have been used to successfully provide opportunities for programming between older adults and preschool children in shared site. intergenerational care programs. Such intergenerational programming allows older adults with dementia to fulfill roles of teacher or mentor to younger children or as collaborative workmates for persons with more advanced dementia while providing children with positive one-on-one interactions with older adults. We review several studies using this approach, describe characteristics of the programs, participants and results obtained and provide recommendations for those interested in extending this line of work. PMID:22423215
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Galvin, James E.
2014-01-01
The number of individuals with dementia is expected to increase dramatically over the next 20 years. Given the complicated clinical, sociobehavioral, and caregiving skills that are needed to comprehensively assess and manage individuals with dementia, the gold standard of care requires involvement of an interprofessional team. This systematic review examined 4,023 abstracts, finding 18 papers from 16 studies where an interprofessional dissemination program was performed. Most studies found some improvement in clinician knowledge or confidence, or patient outcomes, though methods and patient and clinician populations were disparate. While a significant evidence base for assessing and managing individuals with dementia has been developed, few studies have examined how to disseminate this research, and even fewer in an interprofessional manner. These findings suggest that greater emphasis needs to be placed on disseminating existing evidence-based care and ensuring that programs are interprofessional in nature so that excellent, patient-centered care is provided. PMID:23879387
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Can We Afford Not to Evaluate Services for Elderly Persons with Dementia?
Worrall, Graham; Chambers, Larry W.
1989-01-01
With the increasing expenditure on health-care programs for seniors, there is an urgent need to evaluate such programs. The Measurement Iterative Loop is a tool that can provide both health administrators and health researchers with a method of evaluation of existing programs and identification of gaps in knowledge, and forms a rational basis for health-care policy decisions. In this article, the Loop is applied to one common problem of the elderly: dementia. PMID:21248993
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Han, Yoon-Soo; Araki, Tatsuo; Lee, Pil-Young; Choi, Jung-Hyun; Kwon, In-Seon; Kwon, Ki-Nam; Kim, Ji-Youn
2016-01-01
The purpose of this study was to develop a cognitive enhancement gymnastics program for the elderly with dementia and to verify its effect. The study was conducted on 27 people with dementia being treated in a dementia day care center in Incheon city. No statistically significant differences were found in the measures Mini-Mental State Examination for Dementia Screening (MMSE-DS), Short Geriatric Depression Scale (SGDS), Seoul Activities of Daily Living (S-ADL), or rock-paper-scissors. However, the MMSE-DS and rock-paper-scissors showed improvement after 12 weeks. PMID:27656632
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Clinical features and multidisciplinary approaches to dementia care
Grand, Jacob HG; Caspar, Sienna; MacDonald, Stuart WS
2011-01-01
Dementia is a clinical syndrome of widespread progressive deterioration of cognitive abilities and normal daily functioning. These cognitive and behavioral impairments pose considerable challenges to individuals with dementia, along with their family members and caregivers. Four primary dementia classifications have been defined according to clinical and research criteria: 1) Alzheimer’s disease; 2) vascular dementias; 3) frontotemporal dementias; and 4) dementia with Lewy bodies/Parkinson’s disease dementia. The cumulative efforts of multidisciplinary healthcare teams have advanced our understanding of dementia beyond basic descriptions, towards a more complete elucidation of risk factors, clinical symptoms, and neuropathological correlates. The characterization of disease subtypes has facilitated targeted management strategies, advanced treatments, and symptomatic care for individuals affected by dementia. This review briefly summarizes the current state of knowledge and directions of dementia research and clinical practice. We provide a description of the risk factors, clinical presentation, and differential diagnosis of dementia. A summary of multidisciplinary team approaches to dementia care is outlined, including management strategies for the treatment of cognitive impairments, functional deficits, and behavioral and psychological symptoms of dementia. The needs of individuals with dementia are extensive, often requiring care beyond traditional bounds of medical practice, including pharmacologic and non-pharmacologic management interventions. Finally, advanced research on the early prodromal phase of dementia is reviewed, with a focus on change-point models, trajectories of cognitive change, and threshold models of pathological burden. Future research goals are outlined, with a call to action for social policy initiatives that promote preventive lifestyle behaviors, and healthcare programs that will support the growing number of individuals affected by dementia. PMID:21655340
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A home health care approach to exercise for persons with Alzheimer's disease.
Logsdon, Rebecca G; McCurry, Susan M; Teri, Linda
2005-01-01
Regular exercise is a mainstay of preventive health care for individuals of all ages. Research with older adults has shown that exercise reduces risk of chronic illness, maintains mobility and function, enhances mood, and may even improve cognitive function. For individuals with dementia, exercise programs are particularly likely to improve health, mood, and quality of life; the challenge at this time is to make exercise accessible and enjoyable, demonstrate its benefits, and convince family caregivers of its worth for individuals with dementia. Home health providers are uniquely positioned to assist caregivers in developing and implementing a home exercise program for their care recipient with dementia. Results of a controlled critical trial conducted at the University of Washington have demonstrated the feasibility and efficacy of a home health exercise and problem solving intervention (Reducing Disability in Alzheimer's Disease, or RDAD) for decreasing physical, psychological, and behavioral disabilities associated with dementia. This article describes the RDAD program, discusses the role of home health providers in its delivery, and provides an example of its implementation.
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Sexuality & Dementia: An eLearning Resource to Improve Knowledge and Attitudes of Aged-Care Staff
ERIC Educational Resources Information Center
Jones, Cindy; Moyle, Wendy
2016-01-01
Expression of sexuality by older people, particularly those with dementia, can be challenging and confronting for aged-care staff. Education on this topic is often a low priority area for aged-care organizations, and there appears to be limited training programs available. Results from our study highlighted the value of an eLearning education…
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Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita
2015-09-01
The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia.
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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.
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Dementia wander garden aids post cerebrovascular stroke restorative therapy: a case study.
Detweiler, Mark B; Warf, Carlena
2005-01-01
An increasing amount of literature suggests the positive effects of nature in healthcare. The extended life expectancy in the US and the consequent need for long-term care indicates a future need for restorative therapy innovations to reduce the expense associated with long-term care. Moving carefully selected stroke patients' sessions to the peaceful setting of a dementia wander garden, with its designed paths and natural stimuli, may be beneficial. Natural settings have been shown to improve attention and reduce stress--both important therapy objectives in many post-stroke rehabilitation programs. In this case study, using the dementia wander garden for restorative therapy of a non-dementia patient was a novel idea for the restorative therapy group, which does not have a horticultural therapy program. The dementia wander garden stage of the post-stroke rehabilitation helped the patient through a period of treatment resistance. The garden provided both an introduction to the patient's goal of outdoor rehabilitation and a less threatening environment than the long-term care facility hallways. In part because the patient was less self-conscious about manifesting his post-stroke neurological deficits, falling, and being viewed as handicapped when in the dementia wander garden setting, he was able to resume his treatment plan and finish his restorative therapy. In many physical and mental rehabilitation plans, finding a treatment modality that will motivate an individual to participate is a principal goal. Use of a dementia wander garden may help some patients achieve this goal in post-stroke restorative therapy.
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Lee, Linda; Weston, W Wayne; Hillier, Loretta; Archibald, Douglas; Lee, Joseph
2018-06-21
Family physicians often find themselves inadequately prepared to manage dementia. This article describes the curriculum for a resident training intervention in Primary Care Collaborative Memory Clinics (PCCMC), outlines its underlying educational principles, and examines its impact on residents' ability to provide dementia care. PCCMCs are family physician-led interprofessional clinic teams that provide evidence-informed comprehensive assessment and management of memory concerns. Within PCCMCs residents learn to apply a structured approach to assessment, diagnosis, and management; training consists of a tutorial covering various topics related to dementia followed by work-based learning within the clinic. Significantly more residents who trained in PCCMCs (sample = 98), as compared to those in usual training programs (sample = 35), reported positive changes in knowledge, ability, and confidence in ability to assess and manage memory problems. The PCCMC training intervention for family medicine residents provides a significant opportunity for residents to learn about best clinical practices and interprofessional care needed for optimal dementia care integrated within primary care practice.
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Washington, Tiffany R; Tachman, Jacqueline A
2017-01-01
This study describes a community-university partnership to support a gerontological social work student-delivered respite program, the Houseguest Program (Houseguest). Houseguest was designed using a community-engaged scholarship model of integrating research, teaching, and service. Houseguest was piloted with a small group of community-dwelling, coresiding dementia caregivers and care recipients. We examined caregivers' experiences with student-delivered respite using qualitative data analysis. Thematic analysis produced 8 themes: (a) respite from full time caregiving role, (b) information on caregiving strategies, (c) no-cost supportive services, (d) opportunity for care recipients to socialize, (e) tailored activities for care recipients, (f) rapport-building between students and family dyad, (g) reciprocity between students and family dyad, and (h) program continuation. We conclude with a proposed community-engaged scholarship model for dementia caregiving. Through a community-university partnership, Houseguest reduced the impact of caregiver burden and created an opportunity for students to serve families affected by dementia through respite and tailored activities.
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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.
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Kurz, Alexander; Bakker, Christian; Böhm, Markus; Diehl-Schmid, Janine; Dubois, Bruno; Ferreira, Catarina; Gage, Heather; Graff, Caroline; Hergueta, Thierry; Jansen, Sabine; Jones, Bridget; Komar, Alexander; de Mendonça, Alexandre; Metcalfe, Anna; Milecka, Katrina; Millenaar, Joany; Orrung Wallin, Anneli; Oyebode, Jan; Schneider-Schelte, Helga; Saxl, Susanna; de Vugt, Marjolein
2016-12-01
Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling, and support to this vulnerable yet underserved group. The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support, and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer's disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes, caregivers' stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors, and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly, and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.
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The Experience of Paid Family-Care Workers of People with Dementia in South Korea.
Kim, Jungmin; De Bellis, Anita Marie; Xiao, Lily Dongxia
2018-03-01
The South Korean government introduced the universal long-term care insurance program in 2008 that created a new employment category of "paid family-care worker" to assist the elderly with chronic illnesses including dementia. The aim of this study was to understand the lived experience of paid family-care workers of people with dementia in South Korea. The study was a qualitative research design underpinned by interpretive description principles involving eight paid family-care workers. The participants were recruited by attaching the advertisement flyer in a notice board of an educational facility for paid family-care workers. Paid family-care workers struggled to manage the behavioral and psychological symptoms of their care recipients. Their workloads created physical, emotional, social, and financial burdens. However, the care-giving activities were encouraged through their sense of responsibility, filial piety, and personal religious beliefs. Financial subsidies from the government and help received from others were also identified as encouragements. The education course provided to them assisted them to improve their dementia-care capabilities. Understanding paid family-care workers' lived experience in dementia care in South Korea assists with the identification of their educational needs and level of support they require to improve dementia care in the home care environment. A number of suggestions are made to increase paid family-care workers' knowledge, clinical skills, and job satisfaction to reduce their burdens and work-related incidents, such as challenging behaviors from those being cared for. Copyright © 2018. Published by Elsevier B.V.
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Theorizing How Art Gallery Interventions Impact People With Dementia and Their Caregivers.
Camic, Paul M; Baker, Erin L; Tischler, Victoria
2016-12-01
Dementia refers to a variety of diseases that are characterized by cognitive difficulties and an overall decline in daily living skills. Psychologically informed arts and health programs may be particularly beneficial ways of improving the lives of people with dementia and their caregivers. This study sought to better understand how programs at contemporary and traditional art galleries might play a role in the lives of people with dementia. Participants included 12 people with mild-to-moderate dementia, their 12 caregivers and 4 gallery facilitators. Those with dementia and their caregivers were engaged in art viewing followed by art making over an 8-week period. Data, collected through postintervention interviews with participants, field notes and extensive written communication between the facilitators and research team, were analyzed using grounded theory methodology to theorize how gallery-based interventions affect people with dementia and those who care for them. The emerging theory has four primary components: the art gallery is seen as being a physically valued place that provides intellectual stimulation and offers opportunities for social inclusion that can change how dementia is perceived. These components coalesced to create positive emotional and relational effects for those with dementia and caregivers. The resulting theory has potential implications for the use of gallery-based programs in dementia care within public health, healthcare, and museum/art gallery policy and practice. © The Author 2015. 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.
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Catic, Angela G; Mattison, Melissa L P; Bakaev, Innokentiy; Morgan, Marisa; Monti, Sara M; Lipsitz, Lewis
2014-12-01
To design, implement, and assess the pilot phase of an innovative, remote case-based video-consultation program called ECHO-AGE that links experts in the management of behavior disorders in patients with dementia to nursing home care providers. Pilot study involving surveying of participating long-term care sites regarding utility of recommendations and resident outcomes. Eleven long-term care sites in Massachusetts and Maine. An interprofessional specialty team at a tertiary care center and staff from 11 long-term care sites. Long-term care sites presented challenging cases regarding residents with dementia and/or delirium related behavioral issues to specialists via video-conferencing. Baseline resident characteristics and follow-up data regarding compliance with ECHO-AGE recommendations, resident improvement, hospitalization, and mortality were collected from the long-term care sites. Forty-seven residents, with a mean age of 82 years, were presented during the ECHO-AGE pilot period. Eighty-three percent of residents had a history of dementia and 44% were taking antipsychotic medications. The most common reasons for presentation were agitation, intrusiveness, and paranoia. Behavioral plans were recommended in 72.3% of patients. Suggestions for medication adjustments were also frequent. ECHO-AGE recommendations were completely or partially followed in 88.6% of residents. When recommendations were followed, sites were much more likely to report clinical improvement (74% vs 20%, P < .03). Hospitalization was also less common among residents for whom recommendations were followed. The results suggest that a case-based video-consultation program can be successful in improving the care of elders with dementia and/or delirium related behavioral issues by linking specialists with long-term care providers. Published by Elsevier Inc.
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Ullán, Ana M; Belver, Manuel H; Badía, Marta; Moreno, Carmen; Garrido, Eugenio; Gómez-Isla, José; Gonzalez-Ingelmo, Elena; Delgado, Juan; Serrano, Isabel; Herrero, Carmen; Manzanera, Paloma; Tejedor, Laura
2013-07-01
To describe a contemporary artistic educational program based on photographic cyanotype techniques and to present the results of the program carried out with older people with early dementia. We determined whether these people could participate in the program, their viewpoint about it, and what this program could contribute to their experience. Twenty-one people diagnosed with mild or moderate dementia participated in a series of artistic education workshops. While conducting the workshops, participant observation was carried out, and the participants' engagement was assessed. Upon completing the series, five focus groups were held with the participants with dementia, and another focus group with their professional caretakers. We observed the participants' high level of commitment to the activity and their interest in learning new things. We also observed the participants' satisfaction during the creative process and with their results. The artistic activities not only reinforced the feelings of capacity of the participants with early dementia but also transmitted a positive image of them. Dementia was not an obstacle to participation in the program, which was an opportunity for creativity, learning, enjoyment, and communication for people with dementia. In the authors' opinion, facilitating access to art and artistic education to people with early dementia can contribute to enforcing their rights and to improving the care system.
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Wiersma, Elaine C; O'Connor, Deborah L; Loiselle, Lisa; Hickman, Kathy; Heibein, Bill; Hounam, Brenda; Mann, Jim
2016-05-01
Recently, there has been increasing attention given to finding ways to help people diagnosed with dementia 'live well' with their condition. Frequently however, the attention has been placed on the family care partner as the foundation for creating a context that supports the person with dementia to live well. A recent participatory action research (PAR) study highlighted the importance of beginning to challenge some of the assumptions around how best to include family, especially within a context of supporting citizenship. Three advisory groups consisting of 20 people with dementia, 13 care partners, and three service providers, were set up in three locations across Canada to help develop a self-management program for people with dementia. The hubs met monthly for up to two years. One of the topics that emerged as extremely important to consider in the structuring of the program revolved around whether or not these groups should be segregated to include only people with dementia. A thematic analysis of these ongoing discussions coalesced around four inter-related themes: creating safe spaces; maintaining voice and being heard; managing the balancing act; and the importance of solidarity Underpinning these discussions was the fifth theme, recognition that 'one size doesn't fit all'. Overall an important finding was that the presence of family care-partners could have unintended consequences in relation to creating the space for active citizenship to occur in small groups of people with dementia although it could also offer some opportunities. The involvement of care partners in groups with people with dementia is clearly one that is complex without an obvious answer and dependent on a variety of factors to inform a solution, which can and should be questioned and revisited. © The Author(s) 2016.
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Cuba's Strategy for Alzheimer Disease and Dementia Syndromes.
Bosch-Bayard, Rodolfo I; Llibre-Rodríguez, Juan J; Fernández-Seco, Alberto; Borrego-Calzadilla, Carmen; Carrasco-García, Mayra R; Zayas-Llerena, Tania; Moreno-Carbonell, Carmen R; Reymond-Vasconcelos, Ana G
2016-10-01
Dementia is a great challenge to public health in Cuba due to its impact on society and families. Cuba's National Intervention Strategy for Alzheimer Disease and Dementia Syndromes is designed to address this challenge. The Strategy includes working guidelines for primary and secondary care, education about rights of people with cognitive impairment, professional development, research, and health promotion and dementia prevention. An associated action plan, focused on primary care, includes proposals for creation of memory clinics, day centers and comprehensive rehabilitation services for cognitive stimulation. Short-term measures proposed include increasing early detection; creating a dementia morbidity and mortality registry; promoting professional training; providing support for families; and promoting basic and clinical research on dementia. Medium-term proposals aim to reduce dementia incidence and mortality by controlling risk factors and promoting healthy lifestyles, offering new treatment options and optimizing early detection. A set of indicators has been developed to evaluate strategy implementation. With this strategy, Cuba joins the small number of developing countries that have responded to WHO's call to improve care for patients with dementia and alleviate its impact on society and families. KEYWORDS Dementia, Alzheimer disease, aging, national health programs, social stigma, primary prevention, health promotion, civil rights, Cuba.
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Kim, Jong-Pill; Yang, Jinhyang
The purpose of this study was to develop a small-group-focused suicide prevention program for elders with early-stage dementia and to assess its effects. This was a quasi-experimental study with a control group pretest-posttest design. A total of 62 elders diagnosed with early-stage dementia who were receiving care services at nine daycare centers in J City Korea participated in this study. The experimental group participated in the suicide prevention program twice a week for 5 weeks with a pretest and two posttests The developed suicide prevention program had a significant effect on the perceived health status, social support, depression, and suicidal ideation of elders with early-stage dementia. Nurses should integrate risk factors such as depression and protective factors such as health status and social support into a suicide prevention program. This community-based program in geriatric nursing practice can be effective in preventing suicide among elders with early-stage dementia. Copyright © 2016 Elsevier Inc. All rights reserved.
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Resources for people with dementia
Frank, Christopher; Feldman, Sid; Schulz, Mary
2011-01-01
Abstract Objective To summarize services provided by the Alzheimer Society and discuss other supports and resources available for the management of people with dementia. Sources of information Ovid MEDLINE was searched using the terms dementia, Alzheimer disease, community health services utilization, and caregiver stress. Main message Early diagnosis of dementia has been shown to be of benefit to patients and caregivers. Referral to the Alzheimer Society can help with nonpharmacologic management of dementia at the time of diagnosis and at any time during the course of the illness. Services include education about dementia, caregiver support, coordination of community services, and a variety of written resources for patients and caregivers. When available, the First Link program can assist with referral by minimizing the need for patients or caregivers to contact their local society branches. Other resources, including respite care and technological approaches to managing wandering, are discussed. Conclusion The Alzheimer Society is an important part of dementia management, and family physicians should always consider referral at the time of diagnosis, regardless of the severity of the condition. First Link, when it is available, can facilitate referral. Resources such as respite care and day programs should be considered when available. PMID:22170190
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Resources for people with dementia: the Alzheimer Society and beyond.
Frank, Christopher; Feldman, Sid; Schulz, Mary
2011-12-01
To summarize services provided by the Alzheimer Society and discuss other supports and resources available for the management of people with dementia. Ovid MEDLINE was searched using the terms dementia, Alzheimer disease, community health services utilization, and caregiver stress. Early diagnosis of dementia has been shown to be of benefit to patients and caregivers. Referral to the Alzheimer Society can help with nonpharmacologic management of dementia at the time of diagnosis and at any time during the course of the illness. Services include education about dementia, caregiver support, coordination of community services, and a variety of written resources for patients and caregivers. When available, the First Link program can assist with referral by minimizing the need for patients or caregivers to contact their local society branches. Other resources, including respite care and technological approaches to managing wandering, are discussed. The Alzheimer Society is an important part of dementia management, and family physicians should always consider referral at the time of diagnosis, regardless of the severity of the condition. First Link, when it is available, can facilitate referral. Resources such as respite care and day programs should be considered when available.
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Impact of an activities-based adult dementia care program
Higgins, Margaret; Koch, Kathleen; Hynan, Linda S; Carr, Sandra; Byrnes, Kathleen; Weiner, Myron F
2005-01-01
The investigators studied over one year the impact of a newly established once-a-week activity-based day care program for dementia patients combined with 17 educational sessions for caregivers held at the same facility. Outcome measures were patient and caregiver quality of life (QOL), patient behavioral disturbance, and use of community-based resources. Of the 37 enrollees, 3 chose not to start the program and 13 dropped out before the end of one year, largely due to health-related issues. Of the initial group, 21 attended for the entire year. The average patient Mini-Mental State Exam (MMSE) score at entry was 16, indicating a moderate level of dementia. Average score on the CERAD Behavior Rating Scale for Dementia (BRSD) was 30.1, indicating a mild level of behavioral disturbance. Attendance at day care was 91%; at the caregiver educational sessions, 74%. Patient and caregiver enthusiasm for the program was high and all wanted to continue attendance beyond the study period despite the fact that patients reported no change in QOL. Caregivers rated patients as having significantly less QOL, and rated their own QOL as unchanged. Symptomatic patient behaviors, as measured by the BRSD, increased significantly over the period of study. Caregivers reported greater use of community resources. PMID:18568062
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Fleiner, Tim; Dauth, Hannah; Gersie, Marleen; Zijlstra, Wiebren; Haussermann, Peter
2017-08-29
The primary objective of this trial is to investigate the effects of a short-term exercise program on neuropsychiatric signs and symptoms in acute hospital dementia care. Within a hospital-based randomized controlled trial, the intervention group conducted a 2-week exercise program with four 20-min exercise sessions on 3 days per week. The control group conducted a social stimulation program. Effects on neuropsychiatric signs and symptoms were measured via the Alzheimer's Disease Cooperative Study-Clinical Global Impression of Change, the Neuropsychiatric Inventory, and the Cohen-Mansfield Agitation Inventory. The antipsychotic and sedative dosage was quantified by olanzapine and diazepam equivalents. Eighty-five patients were randomized via minimization to an intervention group (IG) and a control group (CG). Seventy patients (82%) (mean age 80 years, 33 females, mean Mini Mental State Examination score 18.3 points) completed the trial. As compared to the CG (n = 35), the IG (n = 35) showed significantly reduced neuropsychiatric signs and symptoms. Especially, agitated behavior and lability improved. There were no between-group differences concerning antipsychotic and benzodiazepine medication. This exercise program is easily applicable in hospital dementia care and significantly reduces neuropsychiatric signs and symptoms in patients suffering from predominantly moderate stages of dementia. German Clinical Trial Register DRKS00006740 . Registered 28 October 2014.
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ERIC Educational Resources Information Center
Robison, Julie; Curry, Leslie; Gruman, Cynthia; Porter, Martha; Henderson, Charles R., Jr.; Pillemer, Karl
2007-01-01
Purpose: This article reports the results of a randomized, controlled evaluation of Partners in Caregiving in a Special Care Environment, an intervention designed to improve communication and cooperation between staff and families of residents in nursing home dementia programs. Design and Methods: Participants included 388 family members and 384…
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Dyadic Intervention for Family Caregivers and Care Receivers in Early-Stage Dementia
ERIC Educational Resources Information Center
Whitlatch, Carol J.; Judge, Katherine; Zarit, Steven H.; Femia, Elia
2006-01-01
Purpose: The Early Diagnosis Dyadic Intervention (EDDI) program provides a structured, time-limited protocol of one-on-one and dyadic counseling for family caregivers and care receivers who are in the early stages of dementia. The goals and procedures of EDDI are based on previous research suggesting that dyads would benefit from an intervention…
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Carbonneau, Hélène; Caron, Chantal D; Desrosiers, Johanne
2011-01-01
The loss of autonomy associated with dementia affects the people with dementia themselves as well as their caregivers who are often left feeling powerless and incompetent in their caregiving role. Most of the programs developed to support caregivers focus on burden and do not consider the positive aspects of caregiving. Leisure represents a way to enhance the presence of positive aspects in the caring experience. Moreover, leisure might contribute to the maintenance of satisfactory relationships between the caregivers and the person with dementia. An adapted leisure education program was developed as a means of support to caregiver involvement. This study (n=49) aims to evaluate the impact of this program on caregivers' well-being, self-efficacy towards adapted leisure, and quality of the relationship with the care receiver. Mixed methods were used. Pretest-posttest with a follow-up design made up the quantitative part. In addition, open-end interviews (n=10) were conducted. The quantitative results showed few impacts of the program on caregivers. However, the qualitative analysis revealed that the intervention had positive impacts for the caregivers, care receivers and other family members. This study introduces caregiver support in a new, positive perspective by focusing on the positive aspects of caregiving rather than the burden. Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.
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Use of a dementia training designed for nurse aides to train other staff.
Irvine, A Blair; Beaty, Jeff A; Seeley, John R; Bourgeois, Michelle
2013-12-01
Problematic resident behaviors may escalate in long-term care facilities (LTCs). If nurse aides (NAs) are not nearby, the nearest staff to intervene may be non-direct care workers (NDCWs), who have little or no dementia training. This pilot research tested Internet dementia-training program, designed for NAs, on NDCWs in a LTC setting. Sixty-eight NDCWs participated, filling out two baseline surveys at 1-month intervals and a posttest survey after training. The surveys included video-situation testing, items addressing psychosocial constructs associated with behavior change, and measures training-acceptance. Paired t tests showed significant positive effects on measures of knowledge, attitudes, self-efficacy, and behavioral intentions, with small-moderate effect sizes. Nursing staff as well as non-health care workers showed improved scores, and the web-site training program was well received by all participants. These results suggest that Internet training may allow staff development coordinators to conserve limited resources by cross-training of different job categories with the same program.
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Kingsberry, Sheridan Quarless; Mindler, Philinda
2012-06-01
African American caregivers of the elderly, including those who care for patients with Alzheimer's and other forms of dementia, remain underserved by Medicaid Assistance Programs. The purpose of this exploratory study was to ascertain to what degree participants in an Alzheimer's Association program that primarily targeted African Americans applied for and received Medicaid assistance, in particular for adult day care, in-home care, and respite care. Secondary data from the Delaware Regional Office of the Alzheimer's Association's 2006 Caregiver Survey of 38 caregivers were reviewed using descriptive, chi-square, and logistic regression analysis. Results indicate that 20 caregivers applied for Medicaid services, 12 of whom were approved. However, 18 caregivers did not apply for Medicaid mainly because they perceived that they would not qualify for benefits, without investigating their eligibility. Clearly more education is needed in African American communities about the eligibility requirements and benefits of Medicaid Assistance Programs because services such as adult day care, in-home care, and respite care have been shown to reduce some of the burden, stress, and strain associated with caring for elderly patients with Alzheimer's dementia. However, a multisystem approach should be used in the outreach and education processes. Finally, the Medicaid application process should be streamlined to make it less cumbersome. More financial and support services are needed by African American caregivers of Alzheimer's care recipients.
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Parkinson, Lynne; Banbury, Annie; Livingstone, Anne; Gordon, Steven; Ray, Biplob; Byrne, Louise; Nancarrow, Susan; Doran, Chris; McAllister, Margaret; Petersen, Carrie; Pedell, Sonja; Wood, Denise
2018-01-01
In rural Australia, knowledge and utilisation of support by informal carers is lacking. During the caregiving period, socioemotional support from family and friends plays an important role in sustaining caregiving activities. Post-care, these social networks facilitate adjustment to role change and dealing with grief. Developing and improving access to peer support to enable carers to effectively cope with the challenges of caring may positively influence their caring experience. The primary objective of this project is to examine the response of isolated rural carers for older people with dementia to a videoconference (VC) based peer support and information program. Will participation in the program improve self-efficacy, quality of life, and mental health? Secondary objectives are to develop a VC based peer support program for isolated rural carers for older people with dementia, using a co-design approach; and to assess the feasibility of VC technology for enhancing social support to family caregivers in their homes. This project will collaboratively co-design and evaluate a facilitated VC peer support and information program to carers of people with dementia within rural areas. Carers will be recruited through community health and care providers. Program development will use an information sharing approach to facilitate social interaction. A focus of the project is to use off-the-shelf technology which will be more accessible than specialised bespoke solutions that are currently popular in this area of research. A mixed methods repeated measures randomized wait list design will be used to evaluate the project. The primary outcomes are self-efficacy, quality of life, and mental health. Secondary outcomes are perceived social support and user satisfaction with the technology, and intention to continue VC interaction.
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ERIC Educational Resources Information Center
Surr, Claire A.; Gates, Cara; Irving, Donna; Oyebode, Jan; Smith, Sarah Jane; Parveen, Sahdia; Drury, Michelle; Dennison, Alison
2017-01-01
Ensuring an informed and effective dementia workforce is of international concern; however, there remains limited understanding of how this can be achieved. This review aimed to identify features of effective dementia educational programs. Critical interpretive synthesis underpinned by Kirkpatrick's return on investment model was applied. One…
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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.
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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,…
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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.
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Bass, David M; Judge, Katherine S; Snow, A Lynn; Wilson, Nancy L; Morgan, Robert; Looman, Wendy J; McCarthy, Catherine A; Maslow, Katie; Moye, Jennifer A; Randazzo, Ronda; Garcia-Maldonado, Maurilio; Elbein, Richard; Odenheimer, Germaine; Kunik, Mark E
2013-08-01
The objective is to test the effectiveness of Partners in Dementia Care (PDC), a care-coordination program that integrates and improves access to medical and nonmedical services, while strengthening the informal care network and providing information, coaching, and emotional support. PDC was delivered via a partnership between Veterans Affairs (VA) Medical Centers (VAMCs) and Alzheimer's Association chapters, for caregivers of veterans with dementia living in the community and receiving primary care from the VA. The initial sample was 486 caregivers of 508 veterans with diagnosed dementia. Outcomes were evaluated for 394 and 324 caregivers who completed 6- and 12- month follow-up, respectively. PDC had a standardized protocol that included assessment and reassessment, action planning, and ongoing monitoring. It was delivered by telephone and e-mail for cost efficiency and the ability to handle caseloads of 100 to 125. Care coordinators from VAMCs and Alzheimer's Association chapters worked as a team using a shared computerized record. A variety of caregiver outcomes was measured after 6 and 12 months. Intervention group caregivers had significant improvements in outcomes representing unmet needs, three types of caregiver strains, depression, and two support resources. Most improvements were evident after 6 months, with more-limited improvements from Months 6 to 12. Some outcomes improved for all caregivers, whereas some improved for caregivers experiencing more initial difficulties or caring for veterans with more-severe impairments. PDC is a promising model that improves linkages between healthcare services and community services, which is a goal of several new national initiatives such as the National Plan to Address Alzheimer's Disease and a proposed amendment to the Older Americans Act. © 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.
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Johansson, L; Wijk, H; Christensson, L
2017-01-01
The aim of the study was to investigate the outcome of change in body weight associated with use of a structured preventive care process among persons with dementia assessed as at risk of malnutrition or malnourished. The preventive care process is a pedagogical model used in the Senior Alert (SA) quality register, where nutrition is one of the prioritized areas and includes four steps: assessment, analysis of underlying causes, actions performed and outcome. An analysis of data from SA with a pre-post design was performed. The participants were living in ordinary housing or special housing in Sweden. 1912 persons, 65 years and older, registered in both SA and the dementia quality register Svedem were included. A national preventive care program including individualized actions. The Mini Nutritional Assessment-Short Form was used to assess nutritional status at baseline. Body weight was measured during baseline and follow-up (7-106 days after baseline). 74.3% persons were malnourished or at risk of malnutrition. Those at risk of malnutrition or malnourished who were registered in all four steps of the preventive care process, increased in body weight from baseline (Md 60.0 kg) to follow-up (Md 62.0 kg) (p=0.013). In those with incomplete registration no increase in body weight was found. Using all steps in the structured preventive care process seems to improve nutritional status of persons with dementia assessed as at risk of malnutrition or malnourished. This study contributes to the development of evidence-based practice regarding malnutrition and persons with dementia.
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Dementia beyond 2025: Knowledge and uncertainties.
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.
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Lee, Michelle M; Camp, Cameron J; Malone, Megan L
2007-01-01
Fourteen nursing home residents on a dementia special care unit at a skilled nursing facility took part in one-to-one intergenerational programming (IGP) with 15 preschool children from the facility’s on-site child care center. Montessori-based activities served as the interface for interactions between dyads. The amount of time residents demonstrated positive and negative forms of engagement during IGP and standard activities programming was assessed through direct observation using a tool developed for this purpose – the Myers Research Institute Engagement Scale (MRI-ES). These residents with dementia displayed the ability to successfully take part in IGP. Most successfully presented “lessons” to the children in their dyads, similar to the way that Montessori teachers present lessons to children, while persons with more severe cognitive impairment took part in IGP through other methods such as parallel play. Taking part in IGP was consistently related with higher levels of positive engagement and lower levels of negative forms of engagement in these residents with dementia than levels seen in standard activities programming on the unit. Implications of using this form of IGP, and directions for future research, are discussed. PMID:18044197
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Lee, Michelle M; Camp, Cameron J; Malone, Megan L
2007-01-01
Fourteen nursing home residents on a dementia special care unit at a skilled nursing facility took part in one-to-one intergenerational programming (IGP) with 15 preschool children from the facility's on-site child care center. Montessori-based activities served as the interface for interactions between dyads. The amount of time residents demonstrated positive and negative forms of engagement during IGP and standard activities programming was assessed through direct observation using a tool developed for this purpose--the Myers Research Institute Engagement Scale (MRI-ES). These residents with dementia displayed the ability to successfully take part in IGP. Most successfully presented "lessons" to the children in their dyads, similar to the way that Montessori teachers present lessons to children, while persons with more severe cognitive impairment took part in IGP through other methods such as parallel play. Taking part in IGP was consistently related with higher levels of positive engagement and lower levels of negative forms of engagement in these residents with dementia than levels seen in standard activities programming on the unit. Implications of using this form of IGP, and directions for future research, are discussed.
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Toots, Annika; Littbrand, Håkan; Lindelöf, Nina; Wiklund, Robert; Holmberg, Henrik; Nordström, Peter; Lundin-Olsson, Lillemor; Gustafson, Yngve; Rosendahl, Erik
2016-01-01
Objectives To investigate the effects of a high-intensity functional exercise program on independence in activities of daily living (ADLs) and balance in older people with dementia and whether exercise effects differed between dementia types. Design Cluster-randomized controlled trial: Umeå Dementia and Exercise (UMDEX) study. Setting Residential care facilities, Umeå, Sweden. Participants Individuals aged 65 and older with a dementia diagnosis, a Mini-Mental State Examination score of 10 or greater, and dependence in ADLs (N = 186). Intervention Ninety-three participants each were allocated to the high-intensity functional exercise program, comprising lower limb strength and balance exercises, and 93 to a seated control activity. Measurements Blinded assessors measured ADL independence using the Functional Independence Measure (FIM) and Barthel Index (BI) and balance using the Berg Balance Scale (BBS) at baseline and 4 (directly after intervention completion) and 7 months. Results Linear mixed models showed no between-group effect on ADL independence at 4 (FIM=1.3, 95% confidence interval (CI)=−1.6–4.3; BI=0.6, 95% CI=−0.2–1.4) or 7 (FIM=0.8, 95% CI=−2.2–3.8; BI=0.6, 95% CI=−0.3–1.4) months. A significant between-group effect on balance favoring exercise was observed at 4 months (BBS=4.2, 95% CI=1.8–6.6). In interaction analyses, exercise effects differed significantly between dementia types. Positive between-group exercise effects were found in participants with non-Alzheimer's dementia according to the FIM at 7 months and BI and BBS at 4 and 7 months. Conclusion In older people with mild to moderate dementia living in residential care facilities, a 4-month high-intensity functional exercise program appears to slow decline in ADL independence and improve balance, albeit only in participants with non-Alzheimer's dementia. PMID:26782852
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Toots, Annika; Littbrand, Håkan; Lindelöf, Nina; Wiklund, Robert; Holmberg, Henrik; Nordström, Peter; Lundin-Olsson, Lillemor; Gustafson, Yngve; Rosendahl, Erik
2016-01-01
To investigate the effects of a high-intensity functional exercise program on independence in activities of daily living (ADLs) and balance in older people with dementia and whether exercise effects differed between dementia types. Cluster-randomized controlled trial: Umeå Dementia and Exercise (UMDEX) study. Residential care facilities, Umeå, Sweden. Individuals aged 65 and older with a dementia diagnosis, a Mini-Mental State Examination score of 10 or greater, and dependence in ADLs (N=186). Ninety-three participants each were allocated to the high-intensity functional exercise program, comprising lower limb strength and balance exercises, and 93 to a seated control activity. Blinded assessors measured ADL independence using the Functional Independence Measure (FIM) and Barthel Index (BI) and balance using the Berg Balance Scale (BBS) at baseline and 4 (directly after intervention completion) and 7 months. Linear mixed models showed no between-group effect on ADL independence at 4 (FIM=1.3, 95% confidence interval (CI)=-1.6-4.3; BI=0.6, 95% CI=-0.2-1.4) or 7 (FIM=0.8, 95% CI=-2.2-3.8; BI=0.6, 95% CI=-0.3-1.4) months. A significant between-group effect on balance favoring exercise was observed at 4 months (BBS=4.2, 95% CI=1.8-6.6). In interaction analyses, exercise effects differed significantly between dementia types. Positive between-group exercise effects were found in participants with non-Alzheimer's dementia according to the FIM at 7 months and BI and BBS at 4 and 7 months. In older people with mild to moderate dementia living in residential care facilities, a 4-month high-intensity functional exercise program appears to slow decline in ADL independence and improve balance, albeit only in participants with non-Alzheimer's dementia. © 2016 The Authors. The Journal of the American Geriatrics Society published by Wiley Periodicals, Inc. on behalf of The American Geriatrics Society.
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A break-even analysis for dementia care collaboration: Partners in Dementia Care.
Morgan, Robert O; Bass, David M; Judge, Katherine S; Liu, C F; Wilson, Nancy; Snow, A Lynn; Pirraglia, Paul; Garcia-Maldonado, Maurilio; Raia, Paul; Fouladi, N N; Kunik, Mark E
2015-06-01
Dementia is a costly disease. People with dementia, their families, and their friends are affected on personal, emotional, and financial levels. Prior work has shown that the "Partners in Dementia Care" (PDC) intervention addresses unmet needs and improves psychosocial outcomes and satisfaction with care. We examined whether PDC reduced direct Veterans Health Administration (VHA) health care costs compared with usual care. This study was a cost analysis of the PDC intervention in a 30-month trial involving five VHA medical centers. Study subjects were veterans (N = 434) 50 years of age and older with dementia and their caregivers at two intervention (N = 269) and three comparison sites (N = 165). PDC is a telephone-based care coordination and support service for veterans with dementia and their caregivers, delivered through partnerships between VHA medical centers and local Alzheimer's Association chapters. We tested for differences in total VHA health care costs, including hospital, emergency department, nursing home, outpatient, and pharmacy costs, as well as program costs for intervention participants. Covariates included caregiver reports of veterans' cognitive impairment, behavior problems, and personal care dependencies. We used linear mixed model regression to model change in log total cost post-baseline over a 1-year follow-up period. Intervention participants showed higher VHA costs than usual-care participants both before and after the intervention but did not differ significantly regarding change in log costs from pre- to post-baseline periods. Pre-baseline log cost (p ≤ 0.001), baseline cognitive impairment (p ≤ 0.05), number of personal care dependencies (p ≤ 0.01), and VA service priority (p ≤ 0.01) all predicted change in log total cost. These analyses show that PDC meets veterans' needs without significantly increasing VHA health care costs. PDC addresses the priority area of care coordination in the National Plan to Address Alzheimer's Disease, offering a low-cost, structured, protocol-driven, evidence-based method for effectively delivering care coordination.
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Insight into dementia care management using social-behavioral theory and mixed methods.
Connor, Karen; McNeese-Smith, Donna; van Servellen, Gwen; Chang, Betty; Lee, Martin; Cheng, Eric; Hajar, Abdulrahman; Vickrey, Barbara G
2009-01-01
For health organizations (private and public) to advance their care-management programs, to use resources effectively and efficiently, and to improve patient outcomes, it is germane to isolate and quantify care-management activities and to identify overarching domains. The aims of this study were to identify and report on an application of mixed methods of qualitative statistical techniques, based on a theoretical framework, and to construct variables for factor analysis and exploratory factor analytic steps for identifying domains of dementia care management. Care-management activity data were extracted from the care plans of 181 pairs of individuals (with dementia and their informal caregivers) who had participated in the intervention arm of a randomized controlled trial of a dementia care-management program. Activities were organized into types, using card-sorting methods, influenced by published theoretical constructs on self-efficacy and general strain theory. These activity types were mapped in the initial data set to construct variables for exploratory factor analysis. Principal components extraction with varimax and promax rotations was used to estimate the number of factors. Cronbach's alpha was calculated for the items in each factor to assess internal consistency reliability. The two-phase card-sorting technique yielded 45 activity types out of 450 unique activities. Exploratory factor analysis produced four care-management domains (factors): behavior management, clinical strategies and caregiver support, community agency, and safety. Internal consistency reliability (Cronbach's alpha) of items for each factor ranged from.63 for the factor "safety" to.89 for the factor "behavior management" (Factor 1). Applying a systematic method to a large set of care-management activities can identify a parsimonious number of higher order categories of variables and factors to guide the understanding of dementia care-management processes. Further application of this methodology in outcome analyses and to other data sets is necessary to test its practicality.
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Roberts, Emily; Struckmeyer, Kristopher M.
2018-01-01
Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, many also experience physical and emotional problems directly related to the stress and demands of daily care. One way to alleviate these demands is the growing respite care field, providing services in a variety of settings for caregiver. Through qualitative analysis from face-to-face interviews with 33 family caregivers of individuals with dementia, several themes emerged describing the path to caregiver resilience which include family dynamics, isolation, financial struggles, seeking respite, and acceptance. While much research focuses on a caregiving burden perspective, the innovation of the present study is applying the resilience framework to outcomes from respite programming. PMID:29424252
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Dementia caregivers' responses to 2 Internet-based intervention programs.
Marziali, Elsa; Garcia, Linda J
2011-02-01
The aim of this study was to examine the impact on dementia caregivers' experienced stress and health status of 2 Internet-based intervention programs. Ninety-one dementia caregivers were given the choice of being involved in either an Internet-based chat support group or an Internet-based video conferencing support group. Pre-post outcome measures focused on distress, health status, social support, and service utilization. In contrast to the Chat Group, the Video Group showed significantly greater improvement in mental health status. Also, for the Video Group, improvements in self-efficacy, neuroticism, and social support were associated with lower stress response to coping with the care recipient's cognitive impairment and decline in function. The results show that, of 2 Internet-based intervention programs for dementia caregivers, the video conferencing intervention program was more effective in improving mental health status and improvement in personal characteristics were associated with lower caregiver stress response.
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Alushi, Ledia; Hammond, John A; Wood, Julia H
2015-09-01
In an aging society, the number of people living with dementia is rapidly increasing. Health care students receive little input on dementia during their pre-registration education, hence there is a requirement to improve education to work with this client group. The review aimed to focus on education on working with people with dementia for pre-registration healthcare students. A comprehensive review of the literature. Online databases Medline, PsychInfo, CINAHL, Science Direct and PubMed were used. The studies were selected according to the following criteria: main focus on education and training on working with people with dementia in pre-registration healthcare programs. Reports that described a training program but did not include evaluation were excluded. For inclusion, studies had to be published in English between January 2007 and March 2014. Identified papers were screened and reviewed by the three authors. Nine studies met the inclusion criteria. Most studies were based in North America, predominantly in nursing and medical education. Educational interventions chiefly aimed to improve students' knowledge, comfort level and attitudes toward people with dementia. It was shown that theoretical input alone did not give students the necessary skills to work with people with dementia. Educational interventions were most effective when a practice based experience was preceded by theoretical preparation. Most of the findings were positive, demonstrating the potential to improve students' knowledge, attitude and comfort level, however methods and evaluation were not always sufficiently reported, making them difficult to use or replicate. This review highlights the need for studies with rigorous methods to determine evidence based best practice for all those working with people with dementia in order to provide effective care and improve their quality of life. Copyright © 2015 Elsevier Ltd. All rights reserved.
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Participatory arts programs in residential dementia care: Playing with language differences.
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.
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SAIDO learning as a cognitive intervention for dementia care: a preliminary study.
Kawashima, Ryuta; Hiller, Deborah Lewis; Sereda, Sheryl L; Antonczak, Michelle; Serger, Kara; Gannon, Denise; Ito, Shinji; Otake, Hiroshi; Yunomae, Daisaku; Kobayashi, Akihito; Muller, Christopher; Murata, Hiroyuki; FallCreek, Stephanie
2015-01-01
The purpose of this study was to examine the beneficial effects on cognitive function by a cognitive intervention program designed for dementia care called Learning Therapy in Japan and SAIDO Learning in the United States (hereinafter "SAIDO Learning," as appropriate). SAIDO Learning is a working memory training program that uses systematized basic problems in arithmetic and language, including reading aloud, as well as writing. Twenty-three nursing home residents with dementia were assigned as an intervention group, and another 24 people with dementia at another nursing home were assigned as a control group. Both nursing homes were operated by the same organization, and residents of both nursing homes received essentially the same nursing care. Thirteen and 6 subjects of the intervention and control groups, respectively, were clinically diagnosed as Alzheimer disease (AD). After the 6-month intervention, the participants with AD of the intervention group showed statistically significant improvement in cognitive function, as measured by the Mini-Mental State Examination (MMSE) compared with the control participants. In addition, post hoc analysis revealed that the Frontal Assessment Battery at Bedside (FAB) scores of the intervention group tended to improve after 6-month intervention. Based on MDS scores, improvements in total mood severity scores also were observed, but only in the intervention group of the participants with AD. These results suggest that SAIDO Learning is an effective cognitive intervention and is useful for dementia care. An additional outcome of this intervention, which has not yet been evaluated in detail, appears to be that it promotes greater positive engagement of a diversity of nursing home staff in the residents' individual progress and care needs. Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
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A Chronic Grief Intervention for Dementia Family Caregivers in Long-Term Care
Paun, Olimpia; Farran, Carol J.; Fogg, Louis; Loukissa, Dimitra; Thomas, Peggy E.; Hoyem, Ruby
2017-01-01
Dementia caregivers do not relinquish their role after placing family members in long-term care and they experience increased chronic grief. The Chronic Grief Management Intervention (CGMI) is a12-week group-based program that uses guided discussion to deliver knowledge of Alzheimer’s or a related dementia and teach skills in communication, conflict resolution, and chronic grief management in dementia caregivers who placed their family members in long-term care. Using a quasi-experimental design, 83 caregivers from 15 long-term care facilities received either the CGMI (n = 34) or a comparison condition consisting of two check-in calls (n = 49). In this pilot study, we examined the feasibility of implementing the CGMI and evaluated the effects of the intervention on caregivers’ knowledge and skill and their chronic grief and depression. The intervention was feasible and resulted in significant improvement in caregivers’ heartfelt sadness and longing at 3 months and a significant drop in their guilt at the 6-month follow-up. PMID:24510968
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Samus, Quincy M; Davis, Karen; Willink, Amber; Black, Betty S; Reuland, Melissa; Leoutsakos, Jeannie; Roth, David L; Wolff, Jennifer; Gitlin, Laura N; Lyketsos, Constantine G; Johnston, Deirdre
2017-12-01
Despite availability of effective care strategies for dementia, most health care systems are not yet organized or equipped to provide comprehensive family-centered dementia care management. Maximizing Independence at Home-Plus is a promising new model of dementia care coordination being tested in the U.S. through a Health Care Innovation Award funded by the Centers for Medicare and Medicaid Services that may serve as a model to address these delivery gaps, improve outcomes, and lower costs. This report provides an overview of the Health Care Innovation Award aims, study design, and methodology. This is a prospective, quasi-experimental intervention study of 342 community-living Medicare-Medicaid dual eligibles and Medicare-only beneficiaries with dementia in Maryland. Primary analyses will assess the impact of Maximizing Independence at Home-Plus on risk of nursing home long-term care placement, hospitalization, and health care expenditures (Medicare, Medicaid) at 12, 18 (primary end point), and 24 months, compared to a propensity-matched comparison group. The goals of the Maximizing Independence at Home-Plus model are to improve care coordination, ability to remain at home, and life quality for participants and caregivers, while reducing total costs of care for this vulnerable population. This Health Care Innovation Award project will provide timely information on the impact of Maximizing Independence at Home-Plus care coordination model on a variety of outcomes including effects on Medicaid and Medicare expenditures and service utilization. Participant characteristic data, cost savings, and program delivery costs will be analyzed to develop a risk-adjusted payment model to encourage sustainability and facilitate spread.
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O'Connor, C M; Clemson, L; Brodaty, H; Jeon, Y H; Mioshi, E; Gitlin, L N
2014-05-01
Behavioral and psychological symptoms of dementia (BPSD) are often considered to be the greatest challenge in dementia care, leading to increased healthcare costs, caregiver burden, and placement into care facilities. With potential for pharmacological intervention to exacerbate behaviors or even lead to mortality, the development and rigorous testing of non-pharmacological interventions is vital. A pilot of the Tailored Activities Program (TAP) for reducing problem behaviors in people with dementia was conducted in the United States with promising results. This randomized trial will investigate the effectiveness of TAP for reducing the burden of BPSD on persons with dementia and family caregivers within an Australian population. This trial will also examine the cost-effectiveness and willingness to pay for TAP compared with a control group. This randomized trial aims to recruit 180 participant dyads of a person with dementia and their caregivers. Participants will have a diagnosis of dementia, exhibit behaviors as scored by the Neuropsychiatric Inventory, and the caregiver must have at least 7 h per week contact. Participants will be randomly allocated to intervention (TAP) or control (phone-based education sessions) groups, both provided by a trained occupational therapist. Primary outcome measure will be the revised Neuropsychiatric Inventory - Clinician rating scale (NPI-C) to measure BPSD exhibited by the person with dementia. This trial investigates the effectiveness and cost-effectiveness of TAP within an Australian population. Results will address a significant gap in the current Australian community-support base for people living with dementia and their caregivers.
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Lee, Linda; Molnar, Frank
2017-01-01
Abstract Objective To provide primary care physicians with an approach to driving safety concerns when older persons present with memory difficulties. Sources of information The approach is based on an accredited memory clinic training program developed by the Centre for Family Medicine Primary Care Collaborative Memory Clinic. Main message One of the most challenging aspects of dementia care is the assessment of driving safety. Drivers with dementia are at higher risk of motor vehicle collisions, yet many drivers with mild dementia might be safely able to continue driving for several years. Because safe driving is dependent on multiple cognitive and functional skills, clinicians should carefully consider many factors when determining if cognitive concerns affect driving safety. Specific findings on corroborated history and office-based cognitive testing might aid in the physician’s decisions to refer for comprehensive on-road driving evaluation and whether to notify transportation authorities in accordance with provincial reporting requirements. Sensitive communication and a person-centred approach are essential. Conclusion Primary care physicians must consider many factors when determining if cognitive concerns might affect driving safety in older drivers. PMID:28115437
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Driving and dementia: Efficient approach to driving safety concerns in family practice.
Lee, Linda; Molnar, Frank
2017-01-01
To provide primary care physicians with an approach to driving safety concerns when older persons present with memory difficulties. The approach is based on an accredited memory clinic training program developed by the Centre for Family Medicine Primary Care Collaborative Memory Clinic. One of the most challenging aspects of dementia care is the assessment of driving safety. Drivers with dementia are at higher risk of motor vehicle collisions, yet many drivers with mild dementia might be safely able to continue driving for several years. Because safe driving is dependent on multiple cognitive and functional skills, clinicians should carefully consider many factors when determining if cognitive concerns affect driving safety. Specific findings on corroborated history and office-based cognitive testing might aid in the physician's decisions to refer for comprehensive on-road driving evaluation and whether to notify transportation authorities in accordance with provincial reporting requirements. Sensitive communication and a person-centred approach are essential. Primary care physicians must consider many factors when determining if cognitive concerns might affect driving safety in older drivers. Copyright© the College of Family Physicians of Canada.
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Heiden, Siobhan M; Holden, Richard J; Alder, Catherine A; Bodke, Kunal; Boustani, Malaz
2017-10-01
Mental healthcare is a critical but largely unexplored application domain for human factors/ergonomics. This paper reports on a work system evaluation of a home-based dementia and depression care program for older adults, the Aging Brain Care program. The Workflow Elements Model was used to guide data collection and analysis of 59 h of observation, supplemented by key informant input. We identified four actors, 37 artifacts across seven types, ten action categories, and ten outcomes including improved health and safety. Five themes emerged regarding barriers and facilitators to care delivery in the program: the centrality of relationship building; the use of adaptive workarounds; performance of duplicate work; travel and scheduling challenges; and communication-related factors. Findings offer new insight into how mental healthcare services are delivered in a community-based program and key work-related factors shaping program outcomes. Copyright © 2017 Elsevier Ltd. All rights reserved.
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Chao, Hui-Chen; Kaas, Merrie; Su, Ying-Hwa; Lin, Mei-Feng; Huang, Mei-Chih; Wang, Jing-Jy
2016-06-01
Effective communication between nurses and patients with dementia promotes the quality of patient care by improving the identification of patient needs and by reducing the miscommunication-related frustration of patients and nurses. This study evaluates the effects of an advanced innovative Internet-based communication education (AIICE) program on nurses' communication knowledge, attitudes, frequency of assessing patient communication capacity, and communication performance in the context of care for patients with dementia. In addition, this study attempts to evaluate the indirect effects of this program on outcomes for patients with dementia, including memory and behavior-related problems and depressive symptoms. A quasi-experimental research design with a one-group repeated measure was conducted. Convenience sampling was used to recruit nurses from long-term care facilities in southern Taiwan. Data were analyzed using general estimating equations to compare changes over time across three points: baseline, fourth-week posttest, and 16th-week posttest. One hundred five nurses completed the AIICE program and the posttest surveys. The findings indicate that nurses' communication knowledge, frequency in assessing patients' communication capacity, and communication performance had improved significantly over the baseline by either the 4th- or 16th-week posttest (p < .01). However, communication attitude showed no significant improvement in the posttest survey (p = .40). Furthermore, the findings indicate that the memory and behavior-related problems and the depressive symptoms of patients had decreased significantly by the 16th-week posttest (p = .05). This study showed that the AIICE program improves nurses' communication knowledge, frequency to assess patients' communication capacity, and communication performance and alleviates the memory and behavior-related problems and depressive symptoms of patients. The continuous communication training of nurses using the AIICE program is thus recommended.
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Building capacity for dementia care in Latin America and the Caribbean
Gonzalez, Francisco J; Gaona, Ciro; Quintero, Marialcira; Chavez, Carlos A; Selga, Joyce; Maestre, Gladys E
2014-01-01
Latin America and the Caribbean (LAC) have limited facilities and professionals trained to diagnose, treat, and support people with dementia and other forms of cognitive impairment. The situation for people with dementia is poor, and worsening as the proportion of elderly in the general population is rapidly expanding. We reviewed existing initiatives and provided examples of actions taken to build capacity and improve the effectiveness of individuals, organizations, and national systems that provide treatment and support for people with dementia and their caregivers. Regional barriers to capacity building and the importance of public engagement are highlighted. Existing programs need to disseminate their objectives, accomplishments, limitations, and overall lessons learned in order to gain greater recognition of the need for capacity-building programs. PMID:25932285
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Team-Based Interprofessional Competency Training for Dementia Screening and Management.
Tan, Zaldy S; Damron-Rodriguez, JoAnn; Cadogan, Mary; Gans, Daphna; Price, Rachel M; Merkin, Sharon S; Jennings, Lee; Schickedanz, Heather; Shimomura, Sam; Osterweil, Dan; Chodosh, Joshua
2017-01-01
As many as 50% of people satisfying diagnostic criteria for dementia are undiagnosed. A team-based training program for dementia screening and management was developed targeting four professions (medicine, nursing, pharmacy, social work) whose scope of practice involves dementia care. An interprofessional group of 10 faculty members was trained to facilitate four interactive competency stations on dementia screening, differential diagnoses, dementia management and team care planning, and screening for and managing caregiver stress. Registrants were organized into teams of five members, with at least one member of each profession per team. The teams rotated through all stations, completing assigned tasks through interprofessional collaboration. A total of 117 professionals (51 physicians, 11 nurses, 20 pharmacists, 24 social workers, 11 others) successfully completed the program. Change scores showed significant improvements in overall competence in dementia assessment and intervention (very low = 1; very high = 5; average change 1.12, P < .001), awareness of importance of dementia screening (average change 0.85, P < .001), and confidence in managing medication (average change 0.86, P < .001). Eighty-seven participants (82.9%) reported feeling confident or very confident using the dementia toolkit at their home institution. In a survey administered 3 months after the session, 48 respondents reported that they had changed their approach to administering the Mini-Cog test (78%), differential diagnosis (49%), assessment of caregiver stress (74%), and accessing community support and services (69%). In conclusion, team-based interprofessional competency training is a team teaching model that can be used to enhance competency in dementia screening and management in medical, nursing, pharmacy, and social work practitioners. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.
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Surr, Claire A.; Gates, Cara; Irving, Donna; Oyebode, Jan; Smith, Sarah Jane; Parveen, Sahdia; Drury, Michelle; Dennison, Alison
2017-01-01
Ensuring an informed and effective dementia workforce is of international concern; however, there remains limited understanding of how this can be achieved. This review aimed to identify features of effective dementia educational programs. Critical interpretive synthesis underpinned by Kirkpatrick’s return on investment model was applied. One hundred and fifty-two papers of variable quality were included. Common features of more efficacious educational programs included the need for educational programs to be relevant to participants’ role and experience, involve active face-to-face participation, underpin practice-based learning with theory, be delivered by an experienced facilitator, have a total duration of at least 8 hours with individual sessions of 90 minutes or more, support application of learning in practice, and provide a structured tool or guideline to guide care practice. Further robust research is required to develop the evidence base; however, the findings of this review have relevance for all working in workforce education. PMID:28989194
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DiZazzo-Miller, Rosanne; Samuel, Preethy S; Barnas, Jean M; Welker, Keith M
2014-01-01
OBJECTIVE. The purpose of this study was to examine the feasibility and efficacy of the Family Caregiver Training Program for assisting with the basic activities of daily living of people with dementia. METHOD. A one-group pretest-posttest research design with a 3-mo follow-up was used to examine the efficacy of a manualized education program for caregivers. The 6-hr training was delivered to 72 family caregivers over 3 consecutive weeks (2 hr/wk) by trained clinicians. RESULTS. Caregivers showed a significant gain in knowledge of how to effectively assist with communication and nutrition, t(52) = 7.05, p < .000; transfers and toileting, t(45) = 3.10, p < .003; and bathing and dressing, t(44) = 2.71, p < .01, of their care recipients. CONCLUSION. Our findings demonstrate that this manualized intervention protocol is a promising method of equipping family members with the skills needed to face their everyday challenges in caring for people with dementia. Copyright © 2014 by the American Occupational Therapy Association, Inc.
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Surr, Claire A; Gates, Cara; Irving, Donna; Oyebode, Jan; Smith, Sarah Jane; Parveen, Sahdia; Drury, Michelle; Dennison, Alison
2017-10-01
Ensuring an informed and effective dementia workforce is of international concern; however, there remains limited understanding of how this can be achieved. This review aimed to identify features of effective dementia educational programs. Critical interpretive synthesis underpinned by Kirkpatrick's return on investment model was applied. One hundred and fifty-two papers of variable quality were included. Common features of more efficacious educational programs included the need for educational programs to be relevant to participants' role and experience, involve active face-to-face participation, underpin practice-based learning with theory, be delivered by an experienced facilitator, have a total duration of at least 8 hours with individual sessions of 90 minutes or more, support application of learning in practice, and provide a structured tool or guideline to guide care practice. Further robust research is required to develop the evidence base; however, the findings of this review have relevance for all working in workforce education.
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Forget me not: dementia in prison.
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.
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Buswell, Marina; Goodman, Claire; Roe, Brenda; Russell, Bridget; Norton, Christine; Harwood, Rowan; Fader, Mandy; Harari, Danielle; Drennan, Vari M; Malone, Jo Rycroft; Madden, Michelle; Bunn, Frances
2017-09-01
The prevalence of fecal incontinence (FI) in care homes is estimated to range from 30% to 50%. There is limited evidence of what is effective in the reduction and management of FI in care homes. Using realist synthesis, 6 potential program theories of what should work were identified. These addressed clinician-led support, assessment, and review; the contribution of teaching and support for care home staff on how to reduce and manage FI; addressing the causes and prevention of constipation; how cognitive and physical capacity of the resident affects outcomes; how the potential for recovery, reduction, and management of FI is understood by those involved; and how the care of people living with dementia and FI is integral to the work patterns of the care home and its staff. Dementia was a known risk factor for fecal incontinence (FI), but how it affected uptake of different interventions or the dementia specific continence and toileting skills staff require, were not addressed in the literature. There was a lack of dementia-specific evidence on continence aids. Most care home residents with FI will be doubly incontinent; there is, therefore, limited value in focusing solely on FI or single causes, such as constipation. Medical and nursing support for continence care is an important resource, but it is unhelpful to create a distinction between what is continence care and what is personal or intimate care. Prompted toileting is an approach that may be particularly beneficial for some residents. Valuing the intimate and personal care work unqualified and junior staff provide to people living with dementia and reinforcement of good practice in ways that are meaningful to this workforce are important clinician-led activities. Providing dementia-sensitive continence care within the daily work routines of care homes is key to helping to reduce and manage FI for this population. Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
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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.
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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.
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A dementia care management intervention: which components improve quality?
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.
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Karel, Michele J; Teri, Linda; McConnell, Eleanor; Visnic, Stephanie; Karlin, Bradley E
2016-02-01
Nonpharmacological, psychosocial approaches are first-line treatments for managing behavioral symptoms in dementia, but they can be challenging to implement in long-term care settings. The Veterans Health Administration implemented STAR-VA, an interdisciplinary behavioral approach for managing challenging dementia-related behaviors in its Community Living Center (CLCs, nursing home care) settings. This study describes how the program was implemented and provides an evaluation of Veteran clinical outcomes and staff feedback on the intervention. One mental health professional and registered nurse team from 17 CLCs completed STAR-VA training, which entailed an experiential workshop followed by 6 months of expert consultation as they worked with their teams to implement STAR-VA with Veterans identified to have challenging dementia-related behaviors. The frequency and severity of target behaviors and symptoms of depression, anxiety, and agitation were evaluated at baseline and at intervention completion. Staff provided feedback regarding STAR-VA feasibility and impact. Seventy-one Veterans completed the intervention. Behaviors clustered into 6 types: care refusal or resistance, agitation, aggression, vocalization, wandering, and other. Frequency and severity of target behaviors and symptoms of depression, anxiety, and agitation all significantly decreased, with overall effect sizes of 1 or greater. Staff rated both benefits for Veterans and program feasibility favorably. This evaluation supports the feasibility and effectiveness of STAR-VA, an interdisciplinary, behavioral intervention for managing challenging behaviors among residents with dementia in CLCs. Published by Oxford University Press on behalf of the Gerontological Society of America 2015.
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Mikhaylova, N M
The part II of the review is focused on a history of developing of memory clinics and Alzheimer's disease centers as well as on the indices of their activity in various countries and in Russia. Approaches to the evaluation of clinical and economic efficacy of new technologies of organization of care and a role of the national programs in solving of the problem of old age dementias were considered.
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Schüssler, Sandra; Dassen, Theo; Lohrmann, Christa
2016-10-01
Chronic diseases, like dementia, can lead to care dependency and nursing care problems. This study aims to compare the degree of care dependency and the prevalence of nursing care problems (pressure ulcer, incontinence, malnutrition, falls, restraints) between residents with and without dementia and between the stages of dementia. A cross-sectional design was chosen and a total of 277 residents with and 249 residents without dementia from nine Austrian nursing homes were assessed by staff using standardized instruments. Significantly more residents with than without dementia are completely or to a great extent care dependent (54.5 vs. 16.9 %). The comparison of care dependency between the stages of dementia indicates a large difference between moderate and severe dementia (completely care dependent: 9.3 vs. 44.3 %). The comparison of the assessed nursing care problems between residents with and without dementia reveals a significant difference only with regard to incontinence (urinary: 84.2 vs. 53.2 %, fecal: 50.9 vs. 17.7 %, double: 49.1 vs. 14.9 %). Urinary incontinence is high even in early dementia at 64 %, reaching 94 % in severe dementia. Fecal- and double incontinence are comparatively much lower in early dementia (both types 12 %) and rise to more than 80 % (both types) in severe dementia. These results highlight areas in which dementia care needs further improvements. The authors suggest maximizing residents' independence to stabilize care dependency and improve incontinence care. Furthermore, longitudinal studies are recommended to deepen insight into the development of care dependency and nursing care problems in dementia residents.
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2013-01-01
Background 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. Methods/Design 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. Discussion 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. Trial registration ClinicalTrials.gov, NCT01357564 PMID:24060106
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Dementia Care at End of Life: Current Approaches.
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.
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Liddle, Jacki; Smith-Conway, Erin R; Baker, Rosemary; Angwin, Anthony J; Gallois, Cindy; Copland, David A; Pachana, Nancy A; Humphreys, Michael S; Byrne, Gerard J; Chenery, Helen J
2012-12-01
People with dementia have a range of needs that are met by informal caregivers. A DVD-based training program was developed using research-based strategies for memory and communication in dementia. The effectiveness of the training on the caregiver experience and the well-being of the person with dementia was evaluated. A pre-test/post-test controlled trial was undertaken with caregiver-care-recipient dyads living in the community. Measures of the carers' knowledge of memory and communication strategies, burden, positive perceptions of caregiving, and perceptions of problem behaviors were taken pre- and three months post-intervention. The depression and well-being of the person with dementia were also evaluated. Satisfaction with the training and feedback were measured. Twenty-nine dyads (13 training group, 16 control group) participated. Bonferroni's correction was made to adjust for multiple comparisons, setting α at 0.00385. A significant improvement was found in caregivers' knowledge for the training group compared to the control group (p = 0.0011). The training group caregivers reported a reduction in the frequency of care recipient disruptive behaviors (p = 0.028) and increased perceptions of positive aspects of caregiving (p = 0.039), both at a level approaching significance. The training group care recipients had increased frequency of verbally communicated depressive behaviors at a level approaching significance (p = 0.0126). The frequency of observed depressive behaviors was not significantly different between groups. This approach to training for caregivers of people with dementia appears promising for its impact on knowledge and the caregiving experience. Further research could monitor the impact of the training on broader measures of depression and well-being, with a larger sample.
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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.
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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.
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Dröes, R M; Meiland, F J M; Evans, S; Brooker, D; Farina, E; Szcześniak, D; Van Mierlo, L D; Orrell, M; Rymaszewska, J; Chattat, R
2017-04-04
The MEETINGDEM study aims to implement and evaluate an innovative, inclusive, approach to supporting community dwelling people with mild to moderate dementia and their family carers, called the Meeting Centers Support Program (MCSP), in three countries in the European Union (EU): Italy, Poland and United Kingdom. Demonstrated benefits of this person-centered approach, developed in The Netherlands, include high user satisfaction, reduced behavioral and mood problems, delayed admission to residential care, lower levels of caregiving-related stress, higher carer competence, and improved collaboration between care and welfare organizations. The project will be carried out over a 36 month period. Project partners in the three countries will utilize, and adapt, strategies and tools developed in the Netherlands. In Phase One (month 1-18) activities will focus on establishing an initiative group of relevant organizations and user representatives in each country, exploring pathways to care and potential facilitators and barriers to implementing the program, and developing country specific implementation plans and materials. In Phase Two (month 19‑36) training will be provided to organizations and staff, after which the meeting centers will be established and evaluated for impact on behavior, mood and quality of life of people with dementia and carers, cost-effectiveness, changes in service use, user satisfaction and implementation process. An overall evaluation will draw together findings from the three countries to develop recommendations for successful implementation of MCSP across the EU. If the Meeting Centers approach can be widely implemented, this could lead to major improvements in dementia care across Europe and beyond. The trial was retrospectively registered in May 2016: trial number: NTR5936 .
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A survey of the Queensland healthcare workforce: attitudes towards dementia care and training
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
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Ku, Li-Jung Elizabeth; Pai, Ming-Chyi; Shih, Pei-Yu
2016-01-01
Given the shortage of cost-of-illness studies in dementia outside of the Western population, the current study estimated the annual cost of dementia in Taiwan and assessed whether different categories of care costs vary by severity using multiple disease-severity measures. This study included 231 dementia patient-caregiver dyads in a dementia clinic at a national university hospital in southern Taiwan. Three disease measures including cognitive, functional, and behavioral disturbances were obtained from patients based on medical history. A societal perspective was used to estimate the total costs of dementia according to three cost sub-categories. The association between dementia severity and cost of care was examined through bivariate and multivariate analyses. Total costs of care for moderate dementia patient were 1.4 times the costs for mild dementia and doubled from mild to severe dementia among our community-dwelling dementia sample. Multivariate analysis indicated that functional declines had a greater impact on all cost outcomes as compared to behavioral disturbance, which showed no impact on any costs. Informal care costs accounted for the greatest share in total cost of care for both mild (42%) and severe (43%) dementia patients. Since the total costs of dementia increased with severity, providing care to delay disease progression, with a focus on maintaining patient physical function, may reduce the overall cost of dementia. The greater contribution of informal care to total costs as opposed to social care also suggests a need for more publicly-funded long-term care services to assist family caregivers of dementia patients in Taiwan.
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Lee, Jung-Ah; Nguyen, Hannah; Park, Joan; Tran, Linh; Nguyen, Trang; Huynh, Yen
2017-10-01
Families of ethnic minority persons with dementia often seek help at later stages of the disease. Little is known about the effectiveness of various methods in supporting ethnic minority dementia patients' caregivers. The objective of the study was to identify smartphone and computer usage among family caregivers of dementia patients (i.e., Korean and Vietnamese Americans) to develop dementia-care education programs for them. Participants were asked various questions related to their computer or smartphone usage in conjunction with needs-assessment interviews. Flyers were distributed at two ethnic minority community centers in Southern California. Snowball recruitment was also utilized to reach out to the families of dementia patients dwelling in the community. Thirty-five family caregivers, including 20 Vietnamese and 15 Korean individuals, participated in this survey. Thirty participants (30 of 35, 85.7%) were computer users. Among those, 76.7% (23 of 30) reported daily usage and 53% (16 of 30) claimed to use social media. A majority of the participants (31 of 35, 88.6%) reported that they owned smartphones. More than half of smartphone users (18 of 29, 62%) claimed to use social media applications. Many participants claimed that they could not attend in-class education due to caregiving and/or transportation issues. Most family caregivers of dementia patients use smartphones more often than computers, and more than half of those caregivers communicate with others through social media apps. A smartphone-app-based caregiver intervention may serve as a more effective approach compared to the conventional in-class method. Multiple modalities for the development of caregiver interventions should be considered.
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Lök, Neslihan; Bademli, Kerime
In this study, randomized controlled interventional study pattern was used to examine the effects of the "First You Should Get Stronger" program on the caregiving burden and healthy life style behavior of caregivers of dementia patients. "Zarit Caregiver Burden Scale" and "Healthy Life Style Behavior Scale" were used. The study was completed with 40 caregivers in total with 20 in the intervention group and 20 in the control group. A statistically significant difference was determined between the "Zarit Caregiving Burden Scale" and "Healthy Life Style Behavior Scale" score averages of the intervention group that participated in the "First You Should Get Stronger" program in comparison with those of the control group. It is important for the healths of caregivers to include similar programs for the caregivers of dementia patients in continuous and regular applications. The results highlight the importance of the "First You Should Get Stronger" program significantly decreased the caregiving burden and significantly developed the healthy lifestyle behaviors of caregivers in the intervention group. Since dementia is a difficult neurological syndrome with patients cared at home, it generally wears out the caregivers significantly. It is suggested that the nurses and healthcare professionals working with dementia patients are evaluated separately and that they carry out caregiving applications within the scope of the "First You Should Get Stronger" program. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.
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[Informal care for dementia according to type of service].
Brettschneider, C; Hajek, A; Stein, J; Luck, T; Mamone, S; Wiese, B; Mösch, E; Weeg, D; Fuchs, A; Pentzek, M; Werle, J; Weyerer, S; Mallon, T; van den Bussche, H; Heser, K; Wagner, M; Scherer, M; Maier, W; Riedel-Heller, S G; König, H-H
2018-05-01
Dementia is a major challenge for society and its impact will grow in the future. Informal care is an essential part of dementia care. Previous studies considered informal care as a whole and not by its components. We aimed to assess the degree of association between specific informal care services and dementia. This analysis is based on data from the seventh wave of the AgeCoDe/AgeQualiDe study. Dementia was diagnosed based on the DSM-IV criteria. Severity of dementia was assessed and categorized by means of the Clinical Dementia Rating and eight individual informal care services were considered. Logistic regression models were used to assess associations. Of the 864 participants 18% suffered from dementia (very mild: 4%; mild: 6%; moderate: 5%; severe: 3%). All informal care services were significantly associated with dementia, with an emphasis on "supervision", "regulation of financial matters" and "assistance in the intake of medication". Considering different degrees of dementia severity, similar results arose from the analyses. All three aforementioned services showed a pronounced association with all degrees of dementia severity, except for supervision and very mild dementia. The provision of all types of informal care services is associated with dementia. The association is pronounced for services that can be more easily integrated into the daily routines of the informal caregiver. Policy makers who plan to integrate informal care into the general care arrangements for dementia should consider this.
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Glueckauf, Robert L; Ketterson, Timothy U; Loomis, Jeffrey S; Dages, Pat
2004-01-01
Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are confronted with a variety of challenges in providing assistance to their loved ones, such as dealing with persistent, repetitive questions, managing episodes of agitation and aggressive responding, as well as monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, a significant proportion of dementia caregivers in the United States continue to receive little or no formal instruction in responding effectively to these anxiety-provoking situations. This paper describes the development and implementation of Alzheimer's Caregiver Support Online (also known as AlzOnline), an Internet- and telephone-based education and support network for caregivers of individuals with progressive dementia. An outcome analysis of a Robert Wood Johnson Foundation-funded strategic marketing initiative to promote the use of AlzOnline is reviewed, followed by a presentation of the findings of an initial program evaluation. Finally, future directions for online caregiver evaluation research are proposed.
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Costs of a Staff Communication Intervention to Reduce Dementia Behaviors in Nursing Home Care
Williams, Kristine N.; Ayyagari, Padmaja; Perkhounkova, Yelena; Bott, Marjorie J.; Herman, Ruth; Bossen, Ann
2017-01-01
CONTEXT Persons with Alzheimer’s disease and other dementias experience behavioral symptoms that frequently result in nursing home (NH) placement. Managing behavioral symptoms in the NH increases staff time required to complete care, and adds to staff stress and turnover, with estimated cost increases of 30%. The Changing Talk to Reduce Resistivenes to Dementia Care (CHAT) study found that an intervention that improved staff communication by reducing elderspeak led to reduced behavioral symptoms of dementia or resistiveness to care (RTC). OBJECTIVE This analysis evaluates the cost-effectiveness of the CHAT intervention to reduce elderspeak communication by staff and RTC behaviors of NH residents with dementia. DESIGN Costs to provide the intervention were determined in eleven NHs that participated in the CHAT study during 2011–2013 using process-based costing. Each NH provided data on staff wages for the quarter before and for two quarters after the CHAT intervention. An incremental cost-effectiveness analysis was completed. ANALYSIS An average cost per participant was calculated based on the number and type of staff attending the CHAT training, plus materials and interventionist time. Regression estimates from the parent study then were applied to determine costs per unit reduction in staff elderspeak communication and resident RTC. RESULTS A one percentage point reduction in elderspeak costs $6.75 per staff member with average baseline elderspeak usage. Assuming that each staff cares for 2 residents with RTC, a one percentage point reduction in RTC costs $4.31 per resident using average baseline RTC. CONCLUSIONS Costs to reduce elderspeak and RTC depend on baseline levels of elderspeak and RTC, as well as the number of staff participating in CHAT training and numbers of residents with dementia-related behaviors. Overall, the 3-session CHAT training program is a cost-effective intervention for reducing RTC behaviors in dementia care. PMID:28503675
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Forbes, Dorothy A; Finkelstein, Sara; Blake, Catherine M; Gibson, Maggie; Morgan, Debra G; Markle-Reid, Maureen; Culum, Ivan; Thiessen, Emily
2012-10-01
Accessing, assessing, exchanging, and applying dementia care information can be challenging in rural communities for healthcare practitioners (HCPs), persons with dementia (PWD), and their care partners. The overall purpose of this research was to enable HCPs, care partners, and PWD to use dementia care information more effectively by examining their information needs, how these change over time, and how they access, assess, and apply the knowledge. A qualitative interpretive descriptive approach was used. A convenience sample was initially recruited through study collaborators in Southwestern Ontario, followed by purposive sampling. Nine rural dementia care networks consisting of PWD (n = 5), care partners (n = 14), and HCPs (n = 14) were recruited and 80 interviews were conducted at three time points. Transcripts were coded using Lubrosky's thematic analysis. Six stages of the dementia care journey were identified: (1) recognizing the symptoms; (2) receiving a diagnosis; (3) loss of independence; (4) initiating and using home care and respite services; (5) long-term care (LTC) placement; and (6) decisions related to end-of-life care. Rural care partners identified the need for different types of knowledge during each of these critical decision points of the dementia care journey. They accessed information from family members, friends, local organizations, and dementia internet sites. Persons with dementia tended not to identify the need for dementia care information. The HCPs accessed dementia care information from their own organization, other organizations, and internet sites. Care partners and HCPs assessed the trustworthiness of the information based on whether the source was a well-known agency or their own organization. Barriers to knowledge exchange included: lack of rural community-based services for dementia care; care partners reluctant to seek help and had limited energy; and lack of integration of dementia-related services and supports. Facilitators of knowledge exchange included: rural care partners with healthcare experience who were actively seeking information; development of trusting relationships between HCPs, care partners, and PWD; and formal mechanisms for exchanging information within and across rural community-based organizations. This research illustrates the stages of the dementia care journey, and the types of information typically needed, accessed, assessed, and applied at each stage. Healthcare practitioners can use these findings to support rural care partners in navigating their dementia care journey. Support is needed as care partners often do not have the time, energy, skills, or knowledge to seek out dementia care information independently. In addition, PWD typically do not recognize the need for this knowledge, leaving care partners potentially isolated in this journey. Developing formal linkages within and across rural organizations will facilitate knowledge exchange and the delivery of cost-effective, quality dementia care. However, additional rural community-based resources are urgently needed to implement these recommendations. This may require a redistribution of resources from acute care to rural community care.
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Rethinking musicality in dementia as embodied and relational.
Kontos, Pia; Grigorovich, Alisa
2018-06-01
With the biomedicalisation and the pharmaceuticalisation of dementia, music programs, as with other arts- and leisure-based programs, have primarily been implemented as non-pharmacological means to generate social and behavioural changes. We argue that understanding and fully supporting the musicality of persons living with dementia requires engagement with citizenship discourse. Specifically we draw on a model of relational citizenship that recognizes that corporeality is a fundamental source of self-expression, interdependence, and reciprocal engagement. We articulate this argument with reference to the musicality of two residents living with dementia in long-term residential care; one example is drawn from an ethnographic study of selfhood in dementia and the other is from a study of elder-clowning. Relational citizenship brings a new and critical dimension to the discourse on music, ageing, and the body in contemporary society. It further highlights the ethical imperative to fully support musicality through institutional policies, structures and practices. Copyright © 2018 Elsevier Inc. All rights reserved.
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The Effect of Telephone Support Groups on Costs of Care for Veterans with Dementia
ERIC Educational Resources Information Center
Wray, Laura O.; Shulan, Mollie D.; Toseland, Ronald W.; Freeman, Kurt E.; Vasquez, Bob Edward; Gao, Jian
2010-01-01
Purpose: Few studies have addressed the effects of caregiver interventions on the costs of care for the care recipient. This study evaluated the effects of a caregiver education and support group delivered via the telephone on care recipient health care utilization and cost. Design and Methods: The Telehealth Education Program (TEP) is a…
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Ku, Li-Jung Elizabeth; Pai, Ming-Chyi; Shih, Pei-Yu
2016-01-01
Objective Given the shortage of cost-of-illness studies in dementia outside of the Western population, the current study estimated the annual cost of dementia in Taiwan and assessed whether different categories of care costs vary by severity using multiple disease-severity measures. Methods This study included 231 dementia patient–caregiver dyads in a dementia clinic at a national university hospital in southern Taiwan. Three disease measures including cognitive, functional, and behavioral disturbances were obtained from patients based on medical history. A societal perspective was used to estimate the total costs of dementia according to three cost sub-categories. The association between dementia severity and cost of care was examined through bivariate and multivariate analyses. Results Total costs of care for moderate dementia patient were 1.4 times the costs for mild dementia and doubled from mild to severe dementia among our community-dwelling dementia sample. Multivariate analysis indicated that functional declines had a greater impact on all cost outcomes as compared to behavioral disturbance, which showed no impact on any costs. Informal care costs accounted for the greatest share in total cost of care for both mild (42%) and severe (43%) dementia patients. Conclusions Since the total costs of dementia increased with severity, providing care to delay disease progression, with a focus on maintaining patient physical function, may reduce the overall cost of dementia. The greater contribution of informal care to total costs as opposed to social care also suggests a need for more publicly-funded long-term care services to assist family caregivers of dementia patients in Taiwan. PMID:26859891
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Annear, Michael J; Lea, Emma; Lo, Amanda; Tierney, Laura; Robinson, Andrew
2016-02-04
Residential aged care is an increasingly important health setting due to population ageing and the increase in age-related conditions, such as dementia. However, medical education has limited engagement with this fast-growing sector and undergraduate training remains primarily focussed on acute presentations in hospital settings. Additionally, concerns have been raised about the adequacy of dementia-related content in undergraduate medical curricula, while research has found mixed attitudes among students towards the care of older people. This study explores how medical students engage with the learning experiences accessible in clinical placements in residential aged care facilities (RACFs), particularly exposure to multiple comorbidity, cognitive impairment, and palliative care. Fifth-year medical students (N = 61) completed five-day clinical placements at two Australian aged care facilities in 2013 and 2014. The placements were supported by an iterative yet structured program and academic teaching staff to ensure appropriate educational experiences and oversight. Mixed methods data were collected before and after the clinical placement. Quantitative data included surveys of dementia knowledge and questions about attitudes to the aged care sector and working with older adults. Qualitative data were collected from focus group discussions concerning medical student expectations, learning opportunities, and challenges to engagement. Pre-placement surveys identified good dementia knowledge, but poor attitudes towards aged care and older adults. Negative placement experiences were associated with a struggle to discern case complexity and a perception of an aged care placement as an opportunity cost associated with reduced hospital training time. Irrespective of negative sentiment, post-placement survey data showed significant improvements in attitudes to working with older people and dementia knowledge. Positive student experiences were explained by in-depth engagement with clinically challenging cases and opportunities to practice independent clinical decision making and contribute to resident care. Aged care placements can improve medical student attitudes to working with older people and dementia knowledge. Clinical placements in RACFs challenge students to become more resourceful and independent in their clinical assessment and decision-making with vulnerable older adults. This suggests that aged care facilities offer considerable opportunity to enhance undergraduate medical education. However, more work is required to engender cultural change across medical curricula to embed issues around ageing, multiple comorbidity, and dementia.
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Scerri, Anthony; Scerri, Charles
2017-11-08
Dementia training programmes for staff working in long-term care settings have been found to be effective in improving staff outcomes. This study investigated the impact of a dementia training programme for all Maltese nursing staff working in public nursing/residential homes on their knowledge, attitudes and confidence. Additionally, we identified the predictors of these domains before and after the programme. A 14-hour training programme focusing on dementia management, care and policy was developed for all nursing staff working in public nursing and residential homes in Malta. A pretest-posttest design was used to evaluate the participants' knowledge of dementia, attitudes and confidence in working with residents with dementia using validated tools. Demographic variables were measured and compared with each staff domain. The majority of nursing staff attended the training programme with 261 fully completed questionnaires being collected pre-training and 214 post-training. The programme significantly improved nursing staff knowledge, attitudes and confidence. Stepwise regression analysis of each staff domain showed that the strongest predictor in all models at pre-training was the intensity of previous training programmes. Furthermore, staff who attended previous training continued to improve in their attitudes and confidence following programme completion. The study continues to shed further evidence on the impact of dementia training programs on staff outcomes. It also indicated that the intensity of previous participation in dementia training programmes was related to the participants' knowledge, attitudes and confidence and that continual exposure to training had a cumulative effect.
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Wang, Yao; Xiao, Lily Dongxia; Luo, Yang; Xiao, Shui-Yuan; Whitehead, Craig; Davies, Owen
2018-05-25
Community health professionals play a significant role in dementia care. However, little is known about community health professionals' capacity in dementia care, especially in low and middle-income countries. The aim of the present study was to assess community health professionals' dementia knowledge, attitudes and care approach in China, a country with the largest population of people with dementia in the world and where community based dementia care services are much needed. A cross-sectional survey was conducted. 450 health professionals were recruited into the study using random sampling from community health service centres in Changsha, China. Their knowledge, attitudes and care approach were assessed utilising the Chinese version of the Alzheimer's Disease Knowledge Scale, Dementia Care Attitude Scale and Approach to Advanced Dementia Care Questionnaire respectively. A total of 390 participants returned the questionnaire (response rate 87%). Age, education, professional group and care experience were associated with knowledge scores, and overall dementia knowledge was poor. Attitudes were generally positive and influenced by age, professional group, gender and care experience. The experience of caring for people with dementia was positively associated with a person-centred care approach, although the participants tended not to use a person-centred care approach. A statistically significant association was found between knowledge and attitudes (r = 0.379, P < 0.001), and between attitudes and care approach (r = 0.143, P < 0.001). However, dementia knowledge has no relationship with a person-centred approach. Community health professionals showed generally positive attitudes towards people with dementia. However, they demonstrated poor dementia knowledge and tended not to use a person-centred care approach. The results suggest that a multifaceted approach consisting of educational interventions for community health professionals, and policy and resource development to meet the demand for community dementia care services, is urgently needed in China.
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Memory Club: A Group Intervention for People with Early-Stage Dementia and Their Care Partners
ERIC Educational Resources Information Center
Zarit, Steven H.; Femia, Elia E.; Watson, Jennifer; Rice-Oeschger, Laura; Kakos, Bernadette
2004-01-01
Purpose: Diagnosis of dementia in its early stages presents a window of opportunity for examining the immediate and long-term consequences of the illness at a point when the individual with memory loss can still participate in decision making. Design and Methods: Memory Club is a l0-session group program designed to provide information about…
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Darragh, Margot; Ahn, Ho Seok; MacDonald, Bruce; Liang, Amy; Peri, Kathryn; Kerse, Ngaire; Broadbent, Elizabeth
2017-12-01
This scoping study is the first step of a multiphase, international project aimed at designing a homecare robot that can provide functional support, track physical and psychological well-being, and deliver therapeutic intervention specifically for individuals with mild cognitive impairment. Observational requirements gathering study. Semistructured interviews were conducted with 3 participant groups: (1) individuals with memory challenges, mild cognitive impairment (MCI), or mild dementia (patients; n = 9); (2) carers of those with MCI or dementia (carers; n = 8); and (3) those with expertise in MCI or dementia research, clinical care, or management (experts; n = 16). Interviews took place at the university, at dementia care facilities or other workplaces, at participant's homes, or via skype (experts only). Semistructured interviews were conducted, transcribed, and reviewed. Several key themes were identified within the 4 topics of: (1) daily challenges, (2) safety and security, (3) monitoring health and well-being, and (4) therapeutic intervention. A homecare robot could provide both practical and therapeutic benefit for the mildly cognitively impaired with 2 broad programs providing routine and reassurance; and tracking health and well-being. The next phase of the project aims to program homecare robots with scenarios developed from these results, integrate components from project partners, and then test the feasibility, utility, and acceptability of the homecare robot. Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
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Zeisel, John; Reisberg, Barry; Whitehouse, Peter; Woods, Robert; Verheul, Ad
2016-09-01
Dementia is a major medical and social scourge. Neither pharmacological nor nonpharmacological interventions and treatments have received sufficient funding to be meaningful in combatting this tsunami. Because the term-"nonpharmacological"-refers to what these interventions are not, rather than what they are, nonpharmacological treatments face a special set of challenges to be recognized, accepted, funded, and implemented. In some ways, the current situation is analogous to using the term "nonhate" to mean "love." This article presents a carefully reasoned argument for using the terminology "ecopsychosocial" to describe the full range of approaches and interventions that fall into this category. These include interventions such as educational efforts with care partners, social support programs for individuals with various levels of dementia, efforts to improve community awareness of dementia, an intergenerational school where persons with dementia teach young children, and the design of residential and community settings that improve functioning and can reduce behavioral symptoms of dementia. The proposed terminology relates to the nature of the interventions themselves, rather than their outcomes, and reflects the broadest range of interventions possible under the present rubric-nonpharmacological. The goal of this new label is to be better able to compare interventions and their outcomes and to be able to see the connections between data sets presently not seen as fitting together, thereby encouraging greater focus on developing new ecopsychosocial interventions and approaches that can improve the lives of those with dementia, their care partners, and the broader society. © The Author(s) 2016.
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Violence in municipal care of older people in Sweden as perceived by registered nurses.
Josefsson, Karin; Sonde, Lars; Wahlin, Tarja-Brita Robins
2007-05-01
The main aim was to describe registered nurses' perceptions of violence and threats, as well as their access to prevention measures and routines for handling violent behaviour in municipal care of older people. Another aim was to compare nurses' perceptions working solely in dementia care with those working in general elder care where older people have diverse diagnoses. Violence is often reported in care of older people. The development of dementia units and the implementation of reform have changed care of older people. Dementia disorders have been shown to be a predisposing factor to violence. A non-experimental, descriptive design with a survey research approach was used. The setting was 60 special types of housing with subunits in a large town. The response rate was 62% (n = 213). Forty-five per cent (n = 95) of the nurses worked in dementia care and 55% (118) in general elder care. A questionnaire. Results. Nurses had experienced a high degree indirect threats (dementia care, 45%; general elder care, 51%), direct threats of violent acts (dementia care, 35%; general elder care, 44%) and violent acts (dementia care, 41%; general elder care, 43%). Nurses had witnessed violence and threats towards staff (dementia care, 49%; general elder care, 38%). Even care receivers (dementia care, 20%; general elder care, 19%) were subjected to violence and threats. No statistical differences were found between groups. The nurses in dementia care had more access to education in managing violence and threats, as well as routines for handling violence and a door with a lock to their working unit. Violence occurred frequently in municipal care of older people without any difference between dementia care and general elder care. Nurses in dementia care were more often offered education on how to manage violence and had routines for when violence occurs. Municipal authorities should increase staff education for handling violence and creating safety routines. Violence needs to be taken seriously with a 'zero tolerance' attitude.
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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
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George, Daniel R; Stuckey, Heather L; Whitehead, Megan M
2014-05-01
The creative arts can integrate humanistic experiences into geriatric education. This experiential learning case study evaluated whether medical student participation in TimeSlips, a creative storytelling program with persons affected by dementia, would improve attitudes towards this patient population. Twenty-two fourth-year medical students participated in TimeSlips for one month. The authors analyzed pre- and post-program scores of items, sub-domains for comfort and knowledge, and overall scale from the Dementia Attitudes Scale using paired t-tests or Wilcoxon Signed-rank tests to evaluate mean change in students' self-reported attitudes towards persons with dementia. A case study approach using student reflective writing and focus group data was used to explain quantitative results. Twelve of the 20 items, the two sub-domains, and the overall Dementia Attitudes Scale showed significant improvement post-intervention. Qualitative analysis identified four themes that added insight to quantitative results: (a) expressions of fear and discomfort felt before storytelling, (b) comfort experienced during storytelling, (c) creativity and openness achieved through storytelling, and (d) humanistic perspectives developed during storytelling can influence future patient care. This study provides preliminary evidence that participation in a creative storytelling program improves medical student attitudes towards persons with dementia, and suggests mechanisms for why attitudinal changes occurred.
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Buettner, Linda L; Fitzsimmons, Suzanne
2002-01-01
This project tested an innovative intervention in a controlled clinical investigation of a nonpharmacological treatment of depression in long-term care residents with dementia. This treatment utilized a wheelchair bicycle in a recreation therapy protocol, which combined small group activity therapy and one-to-one bike rides with a staff member. Depression levels were significantly reduced in the two-week portion of the study with levels maintained in the 10-week maintenance period. Improvements were also found in sleep and levels of activity engagement.
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Comparing responses to horticultural-based and traditional activities in dementia care programs.
Jarrott, Shannon E; Gigliotti, Christina M
2010-12-01
Engaging persons with dementia in meaningful activities supports well-being; however, care staff are challenged to implement age- and ability-appropriate activities in a group setting. We compared a randomly assigned treatment group, who received horticultural therapy-based (HT-based) programming to a comparison group, who engaged in traditional activities (TA) programming, on engagement and affect. Horticultural therapy-based programming was implemented twice weekly at 4 treatment sites for 6 weeks, while regular TA were observed at comparison sites. Results revealed no differences between groups on affective domains. Levels of adaptive behavior differed between the groups, with the treatment group demonstrating higher levels of active, passive, and other engagement and the comparison group demonstrating higher levels of self-engagement. Our results highlight the value of HT-based programs and the importance of simultaneously capturing participants' affective and behavioral responses. Theoretical and practical considerations about the facilitation of and context in which the programming occurs are discussed.
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Boots, Lizzy Mm; de Vugt, Marjolein E; Smeets, Claudia Mj; Kempen, Gertrudis Ijm; Verhey, Frans Rj
2017-12-19
Caring for a family member with dementia puts caregivers at risk of overburdening. Electronic health (eHealth) support for caregivers offers an opportunity for accessible tailored interventions. The blended care self-management program "Partner in Balance" (PiB) for early-stage dementia caregivers was executed in Dutch dementia care organizations. The program combines face-to-face coaching with tailored Web-based modules. Next to an evaluation of program effectiveness, an evaluation of sampling and intervention quality is essential for the generalizability and interpretation of results. The aim of this study was to describe the process evaluation from the perspective of both family caregivers (participants) and professionals delivering the intervention (coaches) to determine internal and external validity before the effect analysis and aid future implementation. Implementation, sampling, and intervention quality were evaluated with quantitative and qualitative data from logistical research data, coach questionnaires (n=13), and interviews with coaches (n=10) and participants (n=49). Goal attainment scaling was used to measure treatment-induced change. Analyses were performed with descriptive statistics and deductive content analysis. The participation rate of eligible caregivers was 51.9% (80/154). Recruitment barriers were lack of computer and lack of need for support. Young age and employment were considered recruitment facilitators. All coaches attended training and supervision in blended care self-management. Deviations from the structured protocol were reported on intervention time, structure, and feedback. Coaches described an intensified relationship with the caregiver post intervention. Caregivers appreciated the tailored content and positive feedback. The blended structure increased their openness. The discussion forum was appreciated less. Overall, personal goals were attained after the program (T>50). Implementation barriers included lack of financing, time, and deviating target population. Participants and coaches were satisfied with the intervention, but adapting the content to specific subgroups, for example, younger caregivers, was recommended. Implementation of the program requires more awareness of the benefits of blended care self-management programs and training in tailored self-management skills. Dutch Trial Register (NTR): NTR4748; http://www.trialregister.nl (Archived by WebCite at http://www.webcitation.org/6vSb2t9Mg). ©Lizzy MM Boots, Marjolein E de Vugt, Claudia MJ Smeets, Gertrudis IJM Kempen, Frans RJ Verhey. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 19.12.2017.
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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.
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Vandepitte, Sophie; Van Den Noortgate, Nele; Putman, Koen; Verhaeghe, Sofie; Verdonck, Caroline; Annemans, Lieven
2016-12-01
Supporting informal caregivers of persons with dementia is considered to be an effective strategy for improving the well-being of caregivers and care recipients and for delaying nursing home placement. Although considerable research has been conducted to investigate the effectiveness of psychoeducational interventions, cognitive behavioral therapy, and occupational therapy, research into the effectiveness of respite care is rare. This systematic review aims to investigate the effectiveness of different types of respite care in supporting informal caregivers of persons with dementia. A systematic literature search was conducted using Web of Science and PubMed, and the Quality Assessment Tool for Quantitative Studies was used to assess the methodological quality. Randomized controlled trials, quasi-experimental studies, pretest-posttest studies without a control group, and cohort studies were included. Seventeen papers met the inclusion criteria. Day care services are effective in decreasing caregiver burden and behavioral problems in persons with dementia, but they also accelerate time to nursing home admission. The results of temporary residential admission are rather mixed and show unexpected adverse effects on both caregivers and care recipients. High-quality comparable evidence on community-based respite care is still lacking, although earlier qualitative evidence indicated promising results. Unlike in previous reviews, we were able to draw some conclusions about the effectiveness of some types of respite care. There is nonetheless still a need for new intervention studies measuring the impact of respite care, especially in-home respite care programs, on the caregiver, the care recipient, and health care resource utilization. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.
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Beer, Christopher; Lowry, Rachel; Horner, Barbara; Almeida, Osvaldo P; Scherer, Samuel; Lautenschlager, Nicola T; Bretland, Nick; Flett, Penelope; Schaper, Frank; Flicker, Leon
2011-03-01
Despite high levels of participation in dementia education, general practitioners (GPs) and residential care facility (RCF) staff report perceived learning needs. Small group education, which is flexible, individualized, practical and case-based, is sought. We aimed to develop educational interventions for GPs and RCF staff tailored to meet their perceived educational needs. We used a consultative process to develop education programs. A flexible program for RCF staff was developed in 30-minute blocks, which could be combined in sessions of different lengths. The RCF program aimed to facilitate sustainable change by engaging local "Dementia Champions". For GPs, face-to-face and self-directed packages were developed. We collected participant feedback to evaluate the program. GPs and RCF staff were recruited as part of a larger intervention study. Sixteen of the 27 GPs who were offered the dementia education participated. Two of the 16 GPs participated in both learning packages. A total of 45 GP feedback responses were received from 16 GPs: 28 out of 45 GPs (62%) reported that the participants' learning needs were entirely met. Eighteen of 19 facilities offered the intervention participated and 326 RCF staff attended one or more of the 94 RCF education sessions. Feedback was collected from 93 sessions: 1013 out of 1067 RCF staff feedback responses (95%) reported that the session met the participants' learning needs. Qualitative feedback was also strongly positive. Participants perceived the education programs as meeting their needs. Despite explicit attempts to provide flexible delivery options, overall participation rates remained low.
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Worrall, Graham; Chambers, Larry W.
1990-01-01
With the increasing expenditure on health care programs for seniors, there is an urgent need to evaluate such programs. The Measurement Iterative Loop is a tool that can provide both health administrators and health researchers with a method of evaluation of existing programs and identification of gaps in knowledge, and forms a rational basis for health-care policy decisions. In this article, the Loop is applied to one common problem of the elderly: dementia. PMID:21233998
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Caregiving experiences of family members of persons with dementia in south India.
Narayan, Suzanne M; Varghese, Mathew; Hepburn, Kenneth; Lewis, Marsha; Paul, Isabel; Bhimani, Rozina
2015-08-01
This study reports on the first phase of an investigation aimed at adapting The Savvy Caregiver program, a successful family caregiving curriculum developed in the United States, for application in South India. Thirty family members caring for a person with dementia were interviewed regarding their experiences as caregivers (CGs). Qualitative interviews were conducted with the family member at a geriatric clinic, while other diagnostic procedures were being carried out with the person with dementia. Findings from the study revealed that although family members understood the term CG, none could identify a word for CG in his or her language. There was little understanding of dementia as an illness. Family CGs reported feeling distressed, overwhelmed, and frustrated with caregiving. Caregivers were interested in an educational program, but many had unrealistic expectations for what they wanted to learn. The findings provide directions for adapting The Savvy Caregiver curriculum for Indian family CGs. © The Author(s) 2015.
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Adopt a Care Home: An intergenerational initiative bringing children into care homes.
Di Bona, Laura; Kennedy, Sheila; Mountain, Gail
2017-01-01
Dementia friendly communities, in which people living with dementia actively participate and those around them are educated about dementia, may improve the wellbeing of those living with dementia and reduce the associated stigma. The Adopt a Care Home scheme aims to contribute towards this by teaching schoolchildren about dementia and linking them with people living with dementia in a local care home. Forty-one children, 10 people living with dementia and 8 school/care home staff participated in a mixed methods (questionnaires, observations, interviews and focus groups) evaluation to assess the scheme's feasibility and impact. Data were analysed statistically and thematically. The scheme was successfully implemented, increased children's dementia awareness and appeared enjoyable for most participants. Findings, therefore, demonstrate the scheme's potential to contribute towards dementia friendly communities by increasing children's knowledge and understanding of dementia and engaging people living with dementia in an enjoyable activity, increasing their social inclusion.
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Animal-assisted therapy for dementia: a review of the literature.
Filan, Susan L; Llewellyn-Jones, Robert H
2006-12-01
Animal-assisted therapy (AAT) is gaining popularity as part of therapy programs in residential aged care facilities. Humans and pet dogs respond to quiet interaction with a lowering of blood pressure and an increase in neurochemicals associated with relaxation and bonding. These effects may be of benefit in ameliorating behavioral and psychological symptoms of dementia (BPSD). Medline, PsychInfo and CINAHL databases (1960-2005) were searched for papers on AAT or pets and dementia. Publications of controlled trials that measured the effect of AAT for dementia were reviewed. Several small studies suggest that the presence of a dog reduces aggression and agitation, as well as promoting social behavior in people with dementia. One study has shown that aquaria in dining rooms of dementia care units stimulate residents to eat more of their meals and to gain weight but is limited by the small number of facilities studied. There is preliminary evidence that robotic pets may provide pleasure and interest to people with dementia. Current literature suggests that AAT may ameliorate BPSD, but the duration of the beneficial effect has not been explored. The relative benefits of "resident" versus "visiting" pet dogs are unclear and are confounded by the positive effect of pet interaction on staff or caregivers. Further research on the potential benefits of AAT is recommended.
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McInerney, Fran; Doherty, Kathleen; Bindoff, Aidan; Robinson, Andrew; Vickers, James
2017-01-01
Background: A palliative approach to the care of people with dementia has been advocated, albeit from an emergent evidence base. The person-centred philosophy of palliative care resonates with the often lengthy trajectory and heavy symptom burden of this terminal condition. Aim: To explore participants’ understanding of the concept of palliative care in the context of dementia. The participant population took an online course in dementia. Design: The participant population took a massive open online course on ‘Understanding Dementia’ and posted answers to the question: ‘palliative care means …’ We extracted these postings and analysed them via the dual methods of topic modelling analysis and thematic analysis. Setting/participants: A total of 1330 participants from three recent iterations of the Understanding Dementia Massive Open Online Course consented to their posts being used. Participants included those caring formally or informally for someone living with dementia as well as those with a general interest in dementia Results: Participants were found to have a general awareness of palliative care, but saw it primarily as terminal care, focused around the event of death and specialist in nature. Comfort was equated with pain management only. Respondents rarely overtly linked palliative care to dementia. Conclusions: A general lack of palliative care literacy, particularly with respect to dementia, was demonstrated by participants. Implications for dementia care consumers seeking palliative care and support include recognition of the likely lack of awareness of the relevance of palliative care to dementia. Future research could access online participants more directly about their understandings/experiences of the relationship between palliative care and dementia. PMID:29235386
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Dementia Home Care Resources: How Are We Managing?
Ward-Griffin, Catherine; Hall, Jodi; DeForge, Ryan; St-Amant, Oona; McWilliam, Carol; Oudshoorn, Abram; Forbes, Dorothy; Klosek, Marita
2012-01-01
With the number of people living with dementia expected to more than double within the next 25 years, the demand for dementia home care services will increase. In this critical ethnographic study, we drew upon interview and participant data with persons with dementia, family caregivers, in-home providers, and case managers in nine dementia care networks to examine the management of dementia home care resources. Three interrelated, dialectical themes were identified: (1) finite formal care-inexhaustible familial care, (2) accessible resources rhetoric-Iinaccessible resources reality, and (3) diminishing care resources-increasing care needs. The development of policies and practices that provide available, accessible, and appropriate resources, ensuring equitable, not necessarily equal, distribution of dementia care resources is required if we are to meet the goal of aging in place now and in the future. PMID:22132332
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Skropeta, C Margaret; Colvin, Alf; Sladen, Shannon
2014-10-08
Intergenerational playgroups in aged care are limited and little is known about the perceptions of individuals who have participated in such programs. Most research is focused on intergenerational programs that involved two generations of people--young people and older people or young people and people with dementia reported the significant outcomes for each group of participants. In this study a number of generations participated in the intergenerational playgroup intervention that included older people, child carers who were parents, grandparents or nannies and children aged 0-4 years old. The objective of this study was to explore the benefits of participating in an intergenerational playgroup program IPP in an aged care facility. This mixed methods quantitative and qualitative design explored the benefits of participating in an intergenerational playgroup program IPP in aged care settings. The intervention is an intergenerational playgroup program (IPP) offered in the aged care facility where intergenerational socialisation and interaction occurred between different generations. The SF36 and Geriatric Depression Scale (GDS) were used to collect pre-test post test data. The qualitative interpretive research approach used semi-structured interviews to develop the descriptive interpretation of the intergenerational playgroup experience. Interviews were conducted with aged care residents and child carers. The pre-test post-test results for the SF36 revealed a declining trend in one scale only energy/fatigue and no significant differences on the Geriatric Depression Scale GDS. The interview analyses revealed the following themes (1) intergenerational experiences, (2) two-way contributions, (3) friendships work, (4) personal growth, and (5) environmental considerations and nineteen subthemes were extracted to provide meanings. The IPP provided a successful innovative intergenerational program intervention where older people and people with dementia interacted and connected with a number of people from different generations. The IPP provided meaningful engagement for all participants considered important for self-esteem and the ability to participate fully in society. This allowed people to develop a sense of connectedness and friendships in a safe and secure environment. This increased the dignity of older people and people with dementia within the community and increased public awareness about the existing care and support services available to them.
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ERIC Educational Resources Information Center
Lyman, Karen A.
1989-01-01
Considered impact of physical environment on work-related stress and quality of care in day care center integrating demented people and other frail elderly. Examined positive and negative differences before and after move to new facility. Discusses implications for facility design and other program characteristics. (Author/CM)
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Maslow, Katie; Fortinsky, Richard H
2018-01-18
In the United States, at least half of older adults living with dementia do not have a diagnosis. Their cognitive impairment may not have been detected, and some older adults whose physician recommends that they obtain a diagnostic evaluation do not follow through on the recommendation. Initiatives to increase detection of cognitive impairment and diagnosis of dementia have focused primarily on physician practices and public information programs to raise awareness about the importance of detection and diagnosis. Nonphysician care providers who work with older adults in community and residential care settings, such as aging network agencies, public health agencies, senior housing, assisted living, and nursing homes, interact frequently with older adults who have cognitive impairment but have not had a diagnostic evaluation. These care providers may be aware of signs of cognitive impairment and older adults' concerns about their cognition that have not been expressed to their physician. Within their scope of practice and training, nonphysician care providers can help to increase detection of cognitive impairment and encourage older adults with cognitive impairment to obtain a diagnostic evaluation to determine the cause of the condition. This article provides seven practice recommendations intended to increase involvement of nonphysician care providers in detecting cognitive impairment and encouraging older adults to obtain a diagnostic evaluation. The Kickstart-Assess-Evaluate-Refer (KAER) framework for physician practice in detection and diagnosis of dementia is used to identify ways to coordinate physician and nonphysician efforts and thereby increase the proportion of older adults living with dementia who have a diagnosis. © 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.
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Ducak, Kate; Denton, Margaret; Elliot, Gail
2018-01-01
Montessori-based activities use a person-centred approach to benefit persons living with dementia by increasing their participation in, and enjoyment of, daily life. This study investigated recreation staff and multidisciplinary consultants' perceptions of factors that affected implementing Montessori Methods for Dementia™ in long-term care homes in Ontario, Canada. Qualitative data were obtained during semi-structured telephone interviews with 17 participants who worked in these homes. A political economy of aging perspective guided thematic data analysis. Barriers such as insufficient funding and negative attitudes towards activities reinforced a task-oriented biomedical model of care. Various forms of support and understanding helped put Montessori Methods for Dementia™ into practice as a person-centred care program, thus reportedly improving the quality of life of residents living with dementia, staff and family members. These results demonstrate that when Montessori Methods for Dementia™ approaches are learned and understood by staff they can be used as practical interventions for long-term care residents living with dementia.
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What is good communication for people living with dementia? A mixed-methods systematic review.
Alsawy, Sarah; Mansell, Warren; McEvoy, Phil; Tai, Sara
2017-11-01
Many strategies have been recommended to support caregivers in communicating with people who live with dementia. However, less is known about what makes communication a good and meaningful experience from the perspective of people with dementia. Understanding this may enhance the person with dementia's sense of connectedness, strengthen their relationships, and facilitate person-centered care. The current review aimed to evaluate research that examined experiences of communication in people living with dementia. Studies that examined reports provided by people with dementia, healthcare professionals, and family caregivers were included. A mixed-methods systematic review was conducted using PsychINFO, MEDLINE, and EMBASE databases. After applying the eligibility criteria, 15 studies were included. Although eight of these recruited people with dementia, only one focused on their perspectives of communication experiences and the remaining studies focused on the perspectives of family caregivers and healthcare professionals. These studies either explored experiences without suggestions of communication methods, "open exploration," or through examining experiences of strategies, "exploration of strategies." A significant theme was around communication difficulties that affected interpersonal relationships and activities of daily living. Conversely, personhood strategies and a strong underlying relationship were believed to facilitate communication. The one study that examined the perspectives of people with dementia emphasized the importance of retaining valued relationships and feeling respected during communication. The need to involve people with dementia in research, particularly around their experiences of communication, is evident. Such research would be imperative for facilitating person-centered care, strengthening social relationships, and informing training programs.
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A Behavioral Approach to Improving Self-Care Skills in OBS Patients.
ERIC Educational Resources Information Center
McEvoy, Cathy L.; Patterson, Roger L.
Traditionally, the treatment of geriatric patients suffering from Organic Brain Syndrome (OBS) has been characterized by non-therapeutic custodial care. To determine whether elderly clients with dementia can benefit from self-care skill training, and to compare their progress with clients without OBS, 30 clients of the Residential Aging Program in…
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... with dementia; Home care - dementia References Budson AE, Solomon PR. Why diagnose and treat memory loss, Alzheimer's disease, and dementia? In: Budson AE, Solomon PR, eds. Memory Loss, Alzheimer's Disease, and Dementia . ...
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Family physicians and dementia in Canada: Part 2. Understanding the challenges of dementia care.
Pimlott, Nicholas J G; Persaud, Malini; Drummond, Neil; Cohen, Carole A; Silvius, James L; Seigel, Karen; Hollingworth, Gary R; Dalziel, William B
2009-05-01
To explore the challenges Canadian family physicians face in providing dementia care. Qualitative study using focus groups. Academic family practice clinics in Calgary, Alta, Ottawa, Ont, and Toronto, Ont. Eighteen family physicians. We conducted 4 qualitative focus groups of 4 to 6 family physicians whose practices we had audited in a previous study. Focus group transcripts were analyzed using the principles of thematic analysis. Five major themes related to the provision of dementia care by family physicians emerged: 1) diagnostic uncertainty; 2) the complexity of dementia; 3) time as a paradox in the provision of dementia care; 4) the importance of patients' families; 5) and familiarity with patients. Participants expressed uncertainty about diagnosing dementia and a strong need for expert verification of diagnoses owing to the complexity of dementia. Time, patients' family members, and familiarity with patients were seen as both barriers and enablers in the provision of dementia care. Family physicians face many challenges in providing dementia care. The results of this study and the views of family physicians should be considered in the development and dissemination of future dementia guidelines, as well as by specialist colleagues, policy makers, and those involved in developing continuing physician education about dementia.
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[REHABILITATION OF MOBILITY AND MOTOR FUNCTION IN NURSING HOME RESIDENTS WITH DEMENTIA].
Aizen, Efraim; Lubosky, Enna; Sobeh, Saleh; Ibrahim, Rasha; Pressburger, Dina; Oliven, Roni
2018-04-01
Few clinical trials have evaluated exercise programs developed specifically for patients with dementia in nursing home settings. To determine if a training program tailored for demented patients, can be implemented in a nursing home setting in order to improve motor performances in patients with dementia who suffered functional decline. The present intervention was conducted in wards of patients suffering from dementia in three nursing homes. Patients suffering from dementia and hospitalized in a rehabilitation hospital were the control arm. Eligible patients in the wards assigned to the intervention group (NH; n = 24) received exercise training specifically designed for patients with dementia. Patients in the rehabilitation hospital were observed as a control group (RH; n = 50) and received usual care treatment. Primary endpoints were changes in Functional Independence Measure (FIM), 5X Sit-to-Stand Test, Timed up and go test and ADL. Basic parameters were examined as predictors of positive training response. Both the nursing home residents and rehabilitation hospital patients improved significantly in both primary endpoints (change: in Functional Independence Measure, NH: +119.2 ± 30.8 % versus RH: +83.3 ± 41.9%, p < 0.001; ADL, NH: +143.5 ± 102.6% versus RH: +59.0 ± 90.2%, p < 0.001). Age was found to be a predictor of positive training response. This functional training program tailored for demented patients can be implemented in a nursing home setting to improve motor performances in patients with dementia. Such interventions should be further evaluated in larger randomized controlled trials.
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The intersection of culture in the provision of dementia care: A systematic review.
Brooke, Joanne; Cronin, Camille; Stiell, Marlon; Ojo, Omorogieva
2017-08-09
To understand the intersection of healthcare professionals' and care workers' culture and their provision of person-centred care for people with dementia. Due to the nature of global immigration and recruitment strategies, health care is provided by a culturally diverse workforce. Consequently, there is a need to understand healthcare professionals' and care workers' cultural values of illness, disease and dementia. Cultural values and beliefs regarding dementia and care of the older person differ, and currently, there is a lack of clarity regarding the intersection of culture in the provision of person-centred dementia care. A search of the following databases was completed: Medline, CINAHL, Psychology and Behavioural Sciences, PsycINFO and PubMed for papers published from 1st January 2006 to 31st July 2016. A total of seven qualitative studies met the inclusion and exclusion criteria, all explored the impact of healthcare professionals' and care workers' culture in relation to their provision of person-centred dementia care. A meta-synthesis of the data from these studies identified four themes: cultural perceptions of dementia, illness and older people; impact of cultural perceptions on service use; acculturation of the workforce; and cross-cultural communication. Limited evidence was found on the impact of healthcare professionals' and care workers' culture on their provision of person-centred dementia care. The intersection of culture and dementia included the understanding of dementia, care and family roles. Acculturation of migrant healthcare workers to the culture of the host country, workplace, and support with the communication was identified as necessary for the provision of person-centred dementia care. Open access education and training to support communication is required, alongside the development of robust interventions to support the process of acculturation of migrant healthcare professionals and care workers to provide culturally competent person-centred dementia care. © 2017 John Wiley & Sons Ltd.
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Alzheimer's Caregiver Support Online: lessons learned, initial findings and future directions.
Glueckauf, Robert L; Loomis, Jeffrey S
2003-01-01
Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are faced with a variety of emotional and behavioral difficulties, such as dealing with persistent, repetitive questions, managing agitation and depression, and monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, most dementia caregivers continue to receive little or no formal instruction in responding effectively to these challenges. The current paper describes the development and implementation of Alzheimer's Caregiver Support Online, a Web- and telephone-based education and support network for caregivers of individuals with progressive dementia. Lessons learned from the first two years of this state-supported initiative are discussed, followed by the findings of a Robert Wood Johnson Foundation-funded strategic marketing initiative and an initial program evaluation of AlzOnline's Positive Caregiving classes. Finally, clinical implications and future directions for program development and evaluation research are proposed.
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Regan, Jemma L
2016-07-01
A case study comprised of formal interviews, formal observations and informal discussions investigated the motivations and experiences accessing dementia care health and social care services for a Muslim, Pakistani male with dementia. Motivations derived from 'desperation' and an inability to access support from family or religious community. Experiences of accessing services were mostly negative. Dementia services were ill-informed about how to support persons with young onset dementia, with pre-existing mental health conditions, from an ethnic minority. Education and training to remove barriers to all dementia care services is required for persons with dementia, their families and within dementia services and religious communities. © The Author(s) 2014.
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Jensen, Lou E; Padilla, René
2011-01-01
A systematic review was conducted to determine the effectiveness of interventions to prevent falls in people with Alzheimer's disease (AD) and related dementias. Twelve research reports met inclusion criteria. Studies reported on three types of intervention: (1) exercise- and motor-based interventions, (2) nursing staff-directed interventions, and (3) multidisciplinary interventions. Strategies were offered as single or multifaceted intervention programs. All types of intervention resulted in benefit, although the evidence for effectiveness is tentative because of the studies' limitations. More research is needed to better understand appropriate dosages of intervention. No evidence was found for the effectiveness of prevention programs accessed as part of occasional respite care. Occupational therapy was seldom involved in the interventions researched. Because effective fall prevention programs are embedded in people's daily routines and encouraged participation in occupation, the contribution occupational therapy practitioners can make to the care of people with AD has yet to be fully realized.
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Development of a Self-Report Checklist to Assess Dementia Care by Nurses in Hospital Settings.
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.
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van Alphen, Helena J M; Hortobágyi, Tibor; van Heuvelen, Marieke J G
2016-01-01
Physical activity (PA) has the potential to slow the progression of dementia patients' cognitive and physical decline. A better understanding of the factors that facilitate or hamper dementia patients' PA participation will increase the success rate of implementing PA in dementia patients' daily care. We systematically screened the barriers, motivators, and facilitators of PA participation in dementia patients, complementing previous analyses of quantitative correlates of PA in community-dwelling dementia patients. Systematic searches yielded 78 potential studies of which seven met the eligibility criteria including 39 dementia patients and 36 caregivers (33 spouses and three daughters). We identified 35 barriers, 26 motivators, and 21 facilitators related to PA. We reduced these factors to six themes within the social-ecological model. Prominent barriers to PA were physical and mental limitations and difficulties with guidance and organization of PA by caregivers. Motivators included the motivation to maintain physical and mental health and participate in preferred PA options. Facilitators included strategies to avoid health problems, providing support and guidance for PA, and access to convenient and personalized PA options. The emerging picture suggests that dementia patients' PA participation will increase if service providers become familiar with the health benefits of PA, the characteristics of PA programs, methods of delivery, and the concepts of how such programs can be personalized to and synchronized with patients' individual needs. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.
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First TV ad for dementia care.
2008-12-10
Last month, viewers saw the first-ever TV advertisement about providing care for people with dementia. Screened as part of Bupa's initiative, bringing the issue of dementia care 'out of the shadows,' the ad features Ernie visiting his sister June, who has dementia, in a Bupa care home and shows the personalised care being delivered by specially trained staff.
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Palliative care for advanced dementia: Knowledge and attitudes of long-term care staff.
Chen, I-Hui; Lin, Kuan-Yu; Hu, Sophia H; Chuang, Yeu-Hui; Long, Carol O; Chang, Chia-Chi; Liu, Megan F
2018-02-01
To investigate the knowledge of and attitudes towards palliative care for advanced dementia and their associations with demographics among nursing staff, including nurses and nursing assistants, in long-term care settings. Nursing facilities are places where persons with dementia die; therefore, providing quality end-of-life care to residents with advanced dementia is crucial. To date, little attention has been paid to palliative care practice for patients with advanced dementia. A descriptive, cross-sectional, survey design was used. In total, a sample of 300 nurses (n = 125) and nursing assistants (n = 175) working in long-term care settings in Taiwan participated in this study. Two instruments were administered: demographic characteristics and responses to the Questionnaire of Palliative Care for Advanced Dementia. Descriptive statistics and multiple regression were used for data analysis. Overall, the nurses and nursing assistants had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Additionally, nursing staff who were nurses with greater work experience and those who had received palliative care and hospice training had greater knowledge of palliative care. In addition, nursing staff who had received dementia care training and who had worked in nursing homes had higher levels of positive attitudes towards palliative care. This study indicates the need to provide nurses and nursing assistants with more information about palliative care practice for people with advanced dementia. Particularly, providing education to those who are nursing assistants, who have less working experience, who have not received palliative and dementia care training, and who have not worked in nursing homes can improve overall nursing staff knowledge of and attitudes towards palliative care. Continuing education in principles of palliative care for advanced dementia is necessary for currently practicing nursing staff and should be developed according to their educational background and needs. © 2017 John Wiley & Sons Ltd.
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Chenoweth, Lynn; Stein-Parbury, Jane; White, Danielle; McNeill, Georgene; Jeon, Yun-Hee; Zaratan, Beverley
2016-05-04
Maintaining the health and well-being of family carers of people with dementia is vital, given their potential for experiencing burden associated with the role. The study aimed to help dementia carers develop self-efficacy, be less hassled by the caring role and improve their health and well-being with goal-directed behaviour, by participating in an eight module carer coaching program. The study used mixed methods in a pre/post-test/follow-up design over 24 months, with assignment of consented dementia carers to either individualised (n = 16) or group coaching (n = 32), or usual carer support services (n = 43), depending on preference. Care-giving self-efficacy and hassles, carer health, well-being and goal-directed behaviours were assessed over time. Analysis of Variance (ANOVA) was used to compare changes over time and the effects of coaching on carer self-efficacy, hassles and health, using the Univariate General Linear Model (GLM). All carers were hassled by many aspects of caring at baseline. Participants receiving coaching reported non-significant improvements in most areas of self-efficacy for caring, hassles associated with caring and self-reported health at post-test and follow-up, than did carers receiving usual carer support. Group coaching had greater success in helping carers to achieve their goals and to seek help from informal and formal support networks and services. The study outcomes were generally positive, but need to be interpreted cautiously, given some methodological limitations. It has been shown, however, that health staff can assist dementia carers to develop self-efficacy in better managing their family member's limitations and behaviour, seek help from others and attend to their health. Teaching carers to use goal-directed behaviour may help them achieve these outcomes.
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Hanna, Andrew; Donnelly, James; Aggar, Christina
2018-03-27
Given the social burden and significant cost of dementia care in Australia, finding evidence-based approaches that improve outcomes, maintain independence, and reduce the impact on patients and families is essential. Finding effective ways to train and assist the healthcare staff who support these individuals is also critical, as they are considered to be at risk of workplace stress, burnout, and other psychological disturbances which negatively affects standards of care. The current paper describes a protocol for evaluating the effects of a Montessori-based approach to dementia care, in non-residential respite centres. An 18 month prospective observational, cohort controlled design is suggested that will compare participants from a community respite service that has undergone a Montessori-based workplace culture change and those from a service that provides a person-centred 'care as usual' approach. To achieve this, the protocol includes the assessment of participants across multiple variables on a monthly basis including the cognitive, behavioural, and emotional functioning of clients with dementia, levels of caregiver burden experienced by informal carers, and burnout, compassion satisfaction and workplace engagement among respite staff. The protocol also employs a qualitative evaluation of program fidelity. This approach will provide further insight into the potential benefits of early intervention with Montessori approaches for persons living with dementia in the community, their caregivers, and the staff and volunteers who assist them. Copyright © 2018 Elsevier B.V. All rights reserved.
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McCallion, Philip; Hogan, Mary; Santos, Flavia H; McCarron, Mary; Service, Kathryn; Stemp, Sandy; Keller, Seth; Fortea, Juan; Bishop, Kathleen; Watchman, Karen; Janicki, Matthew P
2017-11-01
Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia. © 2017 John Wiley & Sons Ltd.
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Lin, Li-Chan; Yang, Man-Hua; Kao, Chieh-Chun; Wu, Shiao-Chi; Tang, Sai-Hung; Lin, Jaung-Geng
2009-06-01
To explore the effectiveness of acupressure and Montessori-based activities in decreasing the agitated behaviors of residents with dementia. A double-blinded, randomized (two treatments and one control; three time periods) cross-over design was used. Six special care units for residents with dementia in long-term care facilities in Taiwan were the sites for the study. One hundred thirty-three institutionalized residents with dementia. Subjects were randomized into three treatment sequences: acupressure-presence-Montessori methods, Montessori methods-acupressure-presence and presence-Montessori methods-acupressure. All treatments were done once a day, 6 days per week, for a 4-week period. The Cohen-Mansfield Agitation Inventory, Ease-of-Care, and the Apparent Affect Rating Scale. After receiving the intervention, the acupressure and Montessori-based-activities groups saw a significant decrease in agitated behaviors, aggressive behaviors, and physically nonaggressive behaviors than the presence group. Additionally, the ease-of-care ratings for the acupressure and Montessori-based-activities groups were significantly better than for the presence group. In terms of apparent affect, positive affect in the Montessori-based-activities group was significantly better than in the presence group. This study confirms that a blending of traditional Chinese medicine and a Western activities program would be useful in elderly care and that in-service training for formal caregivers in the use of these interventions would be beneficial for patients
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Arts Participation: Counterbalancing Forces to the Social Stigma of a Dementia Diagnosis.
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.
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The impact of dementia on influenza vaccination uptake in community and care home residents.
Shah, Sunil M; Carey, Iain M; Harris, Tess; DeWilde, Stephen; Cook, Derek G
2012-01-01
Influenza vaccination is recommended for older people irrespective of cognitive decline or residential setting. To examine the effect of dementia diagnosis on flu vaccination uptake in community and care home residents in England and Wales. Retrospective analysis of a primary care database with 378,462 community and 9,106 care (nursing and residential) home residents aged 65-104 in 2008-09. Predictors of vaccine uptake were examined adjusted for age, sex, area deprivation and major chronic diseases. Age and sex standardised uptake of influenza vaccine was 74.7% (95% CI: 73.7-75.8%) in community patients without dementia, 71.4% (69.3-73.5%) in community patients with dementia, 80.5% (78.9-82.2%) in care home patients without dementia and 83.3% (81.4-85.3%) in care home patients with dementia. In a fully adjusted model, compared with community patients without dementia, patients with dementia in the community were less likely to receive vaccination (RR: 0.96, 95% CI: 0.94-0.97) while care home patients with (RR: 1.06, 1.03-1.09) and without (RR: 1.03, 1.01-1.05) dementia were more likely to receive vaccination. Area deprivation and chronic diseases were, respectively, negative and positive predictors of uptake. Lower influenza vaccine uptake among community patients with dementia, compared with care home residents, suggests organisational barriers to community uptake but high uptake among patients with dementia in care homes does not suggest concern over informed consent acts as a barrier. Primary care for community patients with dementia needs to ensure that they receive all appropriate preventive interventions.
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Elliott, Kate-Ellen J; Scott, Jennifer L; Stirling, Christine; Martin, Angela J; Robinson, Andrew
2012-06-01
Dementia increasingly impacts every health and social care system in the world. Preparing the dementia care workforce is therefore paramount, particularly in light of existing problems of staff retention and turnover. Training interventions will need to increase worker and organizational capacity to deliver effective patient care. It is not clear which training interventions best enhance workers' capacity. A review of the evidence for dementia care training interventions to enhance worker capacity and facilitate organizational change is presented. A systematic literature review was conducted. All selected randomized intervention studies aimed to enhance some aspect of dementia care worker or workforce capacity such as knowledge of dementia, psychological well-being, work performance, and organizational factors such as retention or service delivery in dementia care. Seventy-four relevant studies were identified, but only six met inclusion criteria for the review. The six studies selected focused on worker and organizational outcomes in dementia care. All interventions were multi-component with dementia education or instructional training most commonly adopted. No interventions were found for the community setting. Variable effects were found for intervention outcomes and methodological concerns are raised. The rigor of scientific research in training interventions that aim to build capacity of dementia care workers is poor and a strong need exists for evaluation and delivery of such interventions in the community sphere. Wider domains of interest such as worker psychological health and well-being need to be examined further, to understand capacity-building in the dementia care workforce.
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Spijker, Anouk; Verhey, Frans; Graff, Maud; Grol, Richard; Adang, Eddy; Wollersheim, Hub; Vernooij-Dassen, Myrra
2009-01-01
Background Care for people with dementia and their informal caregivers is a challenging aim in healthcare. There is an urgent need for cost-effective support programs that prevent informal caregivers of people with dementia from becoming overburdened, which might result in a delay or decrease of patient institutionalization. For this reason, we have developed the Systematic Care Program for Dementia (SCPD). The SCPD consists of an assessment of caregiver's sense of competence and suggestions on how to deal with competence deficiencies. The efficiency of the SCPD will be evaluated in our study. Methods and design In our ongoing, cluster, randomized, single-blind, controlled trial, the participants in six mental health services in four regions of the Netherlands have been randomized per service. Professionals of the ambulatory mental health services (psychologists and social psychiatric nurses) have been randomly allocated to either the intervention group or the control group. The study population consists of community-dwelling people with dementia and their informal caregivers (patient-caregiver dyads) coming into the health service. The dyads have been clustered to the professionals. The primary outcome measure is the patient's admission to a nursing home or home for the elderly at 12 months of follow-up. This measure is the most important variable for estimating cost differences between the intervention group and the control group. The secondary outcome measure is the quality of the patient's and caregiver's lives. Discussion A novelty in the SCPD is the pro-active and systematic approach. The focus on the caregiver's sense of competence is relevant to economical healthcare, since this sense of competence is an important determinant of delay of institutionalization of people with dementia. The SCPD might be able to facilitate this with a relatively small cost investment for caregivers' support, which could result in a major decrease in costs in the management of dementia. Implementation on a national level will be started if the SCPD proves to be efficient. Trial Registration NCT00147693 PMID:19500421
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[Family companions. New facets in accompanying relatives caring for people with dementia].
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.
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ERIC Educational Resources Information Center
Judge, Katherine S.; Bass, David M.; Snow, A. Lynn; Wilson, Nancy L.; Morgan, Robert; Looman, Wendy J.; McCarthy, Catherine; Kunik, Mark E.
2011-01-01
Purpose: This article provides a detailed description of a telephone-based care coordination intervention, Partners in Dementia Care (PDC), for veterans with dementia and their family caregivers. Essential features of PDC included (a) formal partnerships between Veterans Affairs (VA) medical centers and Alzheimer's Association Chapters; (b) a…
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Schwarzkopf, Larissa; Menn, Petra; Kunz, Simone; Holle, Rolf; Lauterberg, Jörg; Marx, Peter; Mehlig, Hilmar; Wunder, Sonja; Leidl, Reiner; Donath, Carolin; Graessel, Elmar
2011-01-01
Rising life expectancy is associated with higher prevalence rates of dementia disorders. When disease progresses the patients' call on formal health care services and on social support grows which imposes increasing costs of care. The aim of this study was to investigate the costs for patients with mild and moderate dementia in community setting in Germany. We assessed total costs of care and individual cost components for 383 community-living dementia patients alongside a cluster-randomized trial from societal and health insurance perspective. Utilization of formal health care services was based on insurance claims data and time dedicated to informal care was assessed within caregiver interviews. We estimated costs using a two-part regression model adjusting for age, gender and cluster-effects. Costs of care equal €47,747 (Euros) from societal perspective which is almost the 4.7-fold of health insurance expenditures. Valued informal care covers 80.2% of societal costs and increases disproportionally when disease progresses. In moderate dementia the corresponding amount exceeds the one in mild dementia by 69.9%, whereas costs for formal health care services differ by 14.3%. Due to valued informal care, costs of care for community-living patients with moderate dementia are significantly higher than for patients with mild dementia. Informal care is a non-cash item saving expenditures for professional care. To relieve social security system and family caregivers as well as to allow dementia patients to stay at home as long as possible, concepts fostering community-based dementia care and support to family caregivers need to be further developed. Copyright © 2011 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.
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Dementia incidence trend over 1992-2014 in the Netherlands: Analysis of primary care data.
van Bussel, Emma F; Richard, Edo; Arts, Derk L; Nooyens, Astrid C J; Coloma, Preciosa M; de Waal, Margot W M; van den Akker, Marjan; Biermans, Marion C J; Nielen, Markus M J; van Boven, Kees; Smeets, Hugo; Matthews, Fiona E; Brayne, Carol; Busschers, Wim B; van Gool, Willem A; Moll van Charante, Eric P
2017-03-01
Recent reports have suggested declining age-specific incidence rates of dementia in high-income countries over time. Improved education and cardiovascular health in early age have been suggested to be bringing about this effect. The aim of this study was to estimate the age-specific dementia incidence trend in primary care records from a large population in the Netherlands. A dynamic cohort representative of the Dutch population was composed using primary care records from general practice registration networks (GPRNs) across the country. Data regarding dementia incidence were obtained using general-practitioner-recorded diagnosis of dementia within the electronic health records. Age-specific dementia incidence rates were calculated for all persons aged 60 y and over; negative binomial regression analysis was used to estimate the time trend. Nine out of eleven GPRNs provided data on more than 800,000 older people for the years 1992 to 2014, corresponding to over 4 million person-years and 23,186 incident dementia cases. The annual growth in dementia incidence rate was estimated to be 2.1% (95% CI 0.5% to 3.8%), and incidence rates were 1.08 (95% CI 1.04 to 1.13) times higher for women compared to men. Despite their relatively low numbers of person-years, the highest age groups contributed most to the increasing trend. There was no significant overall change in incidence rates since the start of a national dementia program in 2003 (-0.025; 95% CI -0.062 to 0.011). Increased awareness of dementia by patients and doctors in more recent years may have influenced dementia diagnosis by general practitioners in electronic health records, and needs to be taken into account when interpreting the data. Within the clinical records of a large, representative sample of the Dutch population, we found no evidence for a declining incidence trend of dementia in the Netherlands. This could indicate true stability in incidence rates, or a balance between increased detection and a true reduction. Irrespective of the exact rates and mechanisms underlying these findings, they illustrate that the burden of work for physicians and nurses in general practice associated with newly diagnosed dementia has not been subject to substantial change in the past two decades. Hence, with the ageing of Western societies, we still need to anticipate a dramatic absolute increase in dementia occurrence over the years to come.
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Balzer, Katrin; Schröder, Rhian; Junghans, Anne; Stahl, Ute; Träder, Jens-Martin; Köpke, Sascha
2016-01-01
In order to address well-known challenges in dementia care, an inter-professional course was developed to improve medical students' and nursing students' competencies in the provision of evidence-based care for people with dementia. The course comprises lectures, problem-based learning (PbL) tutorials and visitations to care facilities. A pilot study was conducted to evaluate the acceptance and feasibility of the inter-professional course. Alongside preliminary implementation of the newly developed course, a pre-post survey was carried out involving all participating students. The questionnaire contained standardized and open-ended questions on participants' views regarding the quality and relevance of several course components and characteristics. The data were analyzed by means of descriptive statistics. When the course was offered the first time, multiple barriers became evident, leading to premature course termination and subsequent revision of the curriculum. When the revised course was offered, 10 medical students and 8 nursing students participated. The course proved feasible, and the median overall quality was rated as "2" (IQR 2-3) at a rating scale ranging from 1 (very good) to 6 (inadequate). Following aspects were most frequently judged positively: the course's inter-professional scope, the visitations to care facilities and the PbL tutorials. Potential for improvement was particularly noted with regard to a more distinct focus on well-defined, mainly practical learning outcomes. There were no indications of systematic between-group differences in the medical and nursing students' perceptions of the course program. The results confirmed the feasibility of the inter-professional course on dementia care and the relevance of its inter-professional scope. However, to ensure sustainable course implementation in the long term, further program adaptations based on current findings and further evaluation studies focusing on objective parameters of the process and outcome quality are required.
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The use of cognitive behaviour therapy in the management of BPSD in dementia (Innovative practice).
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.
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Conradsson, Mia; Hörnsten, Carl; Rosendahl, Erik; Lindelöf, Nina; Holmberg, Henrik; Nordström, Peter; Gustafson, Yngve; Littbrand, Håkan
2015-01-01
Objectives The aim of this study is to evaluate the effect of a high‐intensity functional exercise program on depressive symptoms among older care facility residents with dementia. Methods Residents (n = 186) with a diagnosis of dementia, age ≥ 65 years, Mini‐Mental State Examination score ≥ 10, and dependence in activities of daily living were included. Participants were randomized to a high‐intensity functional exercise program or a non‐exercise control activity conducted 45 min every other weekday for 4 months. The 15‐item Geriatric Depression Scale (GDS) and the Montgomery–Åsberg Depression Rating Scale (MADRS) were administered by blinded assessors at baseline, 4, and 7 months. Results No difference between the exercise and control activity was found in GDS or MADRS score at 4 or 7 months. Among participants with GDS scores ≥ 5, reductions in GDS score were observed in the exercise and control groups at 4 months (–1.58, P = 0.001 and –1.54, P = 0.004) and 7 months (–1.25, P = 0.01 and –1.45, P = 0.007). Among participants with MADRS scores ≥ 7, a reduction in MADRS score was observed at 4 months in the control group (–2.80, P = 0.009) and at 7 months in the exercise and control groups (–3.17, P = 0.003 and –3.34, P = 0.002). Conclusions A 4‐month high‐intensity functional exercise program has no superior effect on depressive symptoms relative to a control activity among older people with dementia living in residential care facilities. Exercise and non‐exercise group activities may reduce high levels of depressive symptoms. PMID:26644304
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Palliative and end of life care for people with dementia: lessons for clinical commissioners.
Raymond, Mareeni; Warner, Alex; Davies, Nathan; Nicholas, Nirusha; Manthorpe, Jill; Iliffe, Steve
2014-10-01
To synthesize information about management of end of life care in people with dementia using review papers. There are increasing numbers of people being diagnosed with dementia worldwide, and the needs of people with dementia and their carers at the end of life may be different from those with other chronic diseases. By highlighting the challenges of palliative care in persons with dementia and the ways they are best managed, practitioners in primary care may be able to improve services for this group of people at the end of life. A search of electronic databases of English language papers published in peer-reviewed journals, 2000-2011 inclusive was undertaken using broad terms related to palliative care and dementia. 6167 papers were identified. Titles and abstracts were read. Papers were included if they were literature reviews of palliative or end of life care for people with dementia/Parkinson's disease/Lewy body dementia/cognitive impairment/Alzheimer's disease or any other cognitive impairment, in any setting (hospital, care home, community) and covering people of all ages. Papers were excluded if they covered palliative care focusing on other conditions, or were about an aspect of dementia care and treatment not related to palliative care. Our critical synthesis generated five main themes from this review of the reviews: (1) carers' (family caregivers') experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia.
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Stewart, Thomas V; Loskutova, Natalia; Galliher, James M; Warshaw, Gregg A; Coombs, Letoynia J; Staton, Elizabeth W; Huff, Jessica M; Pace, Wilson D
2014-01-01
Given the increasing age of the US population, understanding how primary care is delivered surrounding dementia and physicians' perceived barriers and needs associated with this care is essential. A 29-item questionnaire was developed by project investigators and family physician consultants and mailed to a random sample of 1500 US members of the American Academy of Family Physicians in 2008; 2 follow-up mailings were sent to nonrespondents. Physicians were queried about sociodemographic characteristics, practice patterns, and beliefs (including challenges, barriers, and needs) about care processes focusing on dementia among older patients. The response rate was 60%, with respondents statistically comparable (P > .05) to the American Academy of Family Physicians physician population. Among physicians, 93% screen and/or conduct diagnostic evaluations for dementia in older patients, whereas 91% provide ongoing primary care for patients with dementia whether or not they screen for or diagnose dementia. Forty percent of physicians refer some patients with suspected dementia to other providers (primarily neurologists) to verify diagnosis, for comanagement, or both. Factors affecting the diagnosis of dementia and the delivery of dementia care included patient behavior challenges (aggressiveness, restlessness, paranoia, wandering); comorbidities (falls, delirium, adverse medication reactions, urinary incontinence); caregiver challenges (fatigue, planning for patient's institutional placement, anger); and structural barriers (clinician time, time required for screening, limited treatment options). Tools needed to provide enhanced dementia care included better assessment tools, community resources, and diagnostic and screening tools. Family physicians are highly involved in the assessment and routine care of patients with suspected dementia or diagnosed with dementia, although a relative few are not. This is despite the recognized challenges physicians encounter in the assessment and care processes.
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Borbasi, Sally; Galvin, Kathleen T; Adams, Trevor; Todres, Les; Farrelly, Brona
2013-03-01
To demonstrate the usefulness of a theoretical framework for humanising care of dementia patients. The term humanisation of care has been increasingly used to describe an approach to health care that is informed by core dimensions of what it means to be human. Recent developments in dementia care highlight the importance of maintaining personhood in people with dementia. A conceptual framework is proposed by which the humanisation of care can be understood and applied. Eight dimensions that articulate core features of what needs to be attended to in order for a person to feel more deeply 'met' as a human being are discussed. Evidence from an evaluative study of a dementia outreach service is used to illustrate the usefulness of the humanising framework. Case study examples demonstrate the value of this framework by describing how a dementia outreach service enables care staff in residential aged care facilities to change their focus in the provision of care to residents with dementia. Each of the eight dimensions of humanisation/dehumanisation is used to illustrate how the dementia outreach service team have led to the improvements in resident care. Positive outcomes can be achieved by providing humanised care to residents with dementia. The paper highlights the potential for the humanising framework to be used in dementia care and shows how the framework can be helpfully translated into practice so that carers are supported to adopt an inclusive view of care delivery. A comprehensive framework, grounded in a strong philosophical foundation, can name a breadth of criteria for humanly sensitive care and can be translated into practice in such a way as to potentially transform the provision of care to residents in residential aged care facilities. © 2012 Blackwell Publishing Ltd.
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Powell, Tia
2018-02-01
The anticipated number of persons with dementia continues to grow, and the US has insufficiently planned to provide and pay for care for this large population. A number of significant clinical trials aiming to prevent or cure dementia, including Alzheimer's disease, have not demonstrated success. Because of the lack of efficacious treatments, and the fact that brain changes associated with dementia may begin decades before symptoms, we can predict that efforts to cure or prevent dementia will not succeed in time for millions of people in the baby boomer generation. Because of the anticipated increase in people suffering with dementia in the coming years, US health policy must address major gaps in how to provide and pay for dementia care. Reliance on Medicaid and Medicare as currently structured will not sustain the necessary care, nor can families alone provide all necessary dementia care. Innovative forms of providing long-term care and paying for it are crucially needed.
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2012-01-01
Background Demographic ageing is associated with an increasing number of dementia patients, who reportedly incur higher costs of care than individuals without dementia. Regarding Germany, evidence on these excess costs is scarce. Adopting a payer perspective, our study aimed to quantify the additional yearly expenditures per dementia patient for various health and long-term care services. Additionally, we sought to identify gender-specific cost patterns and to describe age-dependent cost profiles. Methods The analyses used 2006 claims data from the AOK Bavaria Statutory Health Insurance fund of 9,147 dementia patients and 29,741 age- and gender-matched control subjects. Cost predictions based on two-part regression models adjusted for age and gender and excess costs of dementia care refer to the difference in model-estimated means between both groups. Corresponding analyses were performed stratified for gender. Finally, a potentially non-linear association between age and costs was investigated within a generalized additive model. Results Yearly spending within the social security system was circa €12,300 per dementia patient and circa €4,000 per non-demented control subject. About two-thirds of the additional expenditure for dementia patients occurred in the long-term care sector. Within our study sample, male and female dementia patients incurred comparable total costs. However, women accounted for significantly lower health and significantly higher long-term care expenditures. Long-term care spending increased in older age, whereupon health care spending decreased. Thus, at more advanced ages, women incurred greater costs than men of the same age. Conclusions Dementia poses a substantial additional burden to the German social security system, with the long-term care sector being more seriously challenged than the health care sector. Our results suggest that female dementia patients need to be seen as a key target group for health services research in an ageing society. It seems clear that strategies enabling community-based care for this vulnerable population might contribute to lowering the financial burden caused by dementia. This would allow for the sustaining of comprehensive dementia care within the social security system. PMID:22713212
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McKenzie, Ellen L; Brown, Patricia M; Mak, Anita S; Chamberlain, Peter
2017-06-01
This paper examined the psychological factors that influence the well-being of health professionals who work with people with dementia and the types of care (person-centred or task-oriented) provided to these patients. The literature was reviewed to identify the factors influencing the well-being of, and types of care provided by, health professionals working with people experiencing dementia. Based on our review of the literature, we propose that approaches to care and the well-being of health professionals working with dementia patients are influenced by the characterisation of dementia as a terminal illness that typically occurs in older people. Drawing upon terror management theory, we argue that exposure to dementia patients is likely to promote awareness of one's own mortality and death-related anxiety. A theoretical model is presented which posits that health professionals working in dementia care draw on experiential avoidance to manage this anxiety. Both death anxiety, and coping strategies, such as experiential avoidance, used to manage this anxiety may influence health professionals' approaches to care of, and attitudes towards, dementia patients. We also suggest a bi-directional relationship between health professionals' approaches to care and well-being. Recommendations are made regarding future directions for research and implications for training of health professionals providing direct service or consultation in dementia care.
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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.
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Watson, Julie
2016-12-06
People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed. © The Author(s) 2016.
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Kosteniuk, Julie; Morgan, Debra; Innes, Anthea; Keady, John; Stewart, Norma; D'Arcy, Carl; Kirk, Andrew
2014-01-01
Little is known about the views of rural family physicians (FPs) regarding collaborative care models for patients with dementia. The study aims were to explore FPs' views regarding this issue, their role in providing dementia care, and the implications of providing dementia care in a rural setting. This study employed an exploratory qualitative design with a sample of 15 FPs. All rural FPs indicated acceptance of collaborative models. The main disadvantages of practicing rural were accessing urban-based health care and related services and a shortage of local health care resources. The primary benefit of practicing rural was FPs' social proximity to patients, families, and some health care workers. Rural FPs provided care for patients with dementia that took into account the emotional and practical needs of caregivers and families. FPs described positive and negative implications of rural dementia care, and all were receptive to models of care that included other health care professionals.
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Griffiths, Patricia C; Whitney, M Kate; Kovaleva, Mariya; Hepburn, Kenneth
2016-02-01
To test fidelity and preliminary efficacy of Tele-Savvy, an internet-based version of the in-person, evidence-based psychoeducation Savvy Caregiver Program (SCP) for dementia caregivers. Tele-Savvy used synchronous (tele-conferences) and asynchronous components (video modules) to provide program access to caregivers in their homes. SCP experts were surveyed to evaluate Tele-Savvy's fidelity to SCP. A convenience sample of 30 dementia caregivers from the Atlanta VA Medical Center enrolled in the Tele-Savvy clinical demonstration program. Twenty-two caregivers completed both pre- and postprogram evaluations, which included measures of caregiver stress and competence and behavioral and psychological symptoms of dementia (BPSD). Expert review confirmed Tele-Savvy's fidelity with and, in certain domains, improvement on the original. Participants demonstrated moderately high initial levels of burden, anxiety, and depressive symptoms all of which decreased significantly postprogram in an intention to treat analysis. Similar reductions were seen in care recipients' BPSD and caregivers' reactions to them. Marginally significant increases in caregiver competence were observed. Caregiver and expert panel evaluations of program quality were enthusiastic. An effective online caregiver psychoeducation program could provide greatly expanded access for caregivers who cannot attend in person for reasons of distance, transportation limitations, and caregiving responsibilities. Further testing in a controlled trial is needed to establish program efficacy. Published by Oxford University Press on behalf of the Gerontological Society of America 2015.
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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.
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Using dementia as the organizing principle when caring for patients with dementia and comorbidities.
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.
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Risco, Ester; Zabalegui, Adelaida; Miguel, Susana; Farré, Marta; Alvira, Carme; Cabrera, Esther
To describe the implementation of the Balance of Care model in decision-making regarding the best care for patients with dementia in Spain. The Balance of Care model was used, which consists of (1) describing the profile of the typical cases of people with dementia and their caregivers, (2) identifying the most suitable care setting for each of the cases (home-care or long-term care institution), (3) designing specific care plans for each case, and (4) evaluating the cost of the proposed care plans. A total of 1,641 people with dementia and their caregivers from eight European countries were used in the case design. The evaluation of cases was conducted by 20 experts in different medical fields of dementia. In Spain, the results indicated that initially the most suitable placement to take care of people with dementia was the home, however in cases with higher dependency in activities of daily living, the long-term care setting was the best option. For the best care plan, the following resources were chosen: professional help to perform basic activities; day center; multidisciplinary home care team; financial support; community nurse; and social worker. The Balance of Care method allows us to assess the most appropriate place of care for people with dementia systematically, objectively and with a multidisciplinary team. Other cost-effective interventions should be integrated in patients with dementia care in order to improve home care. Copyright © 2016 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.
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Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork
2017-01-05
Dementia is one of the most challenging age-related illnesses for family caregivers, whose care-related burden is well known. Research indicates that day care centres (DCCs) can reduce the caregiver burden and help family caregivers to cope with demands; however, the current body of knowledge is still tentative and inconsistent, and more research is recommended. The aim of this study is to provide an extended understanding of the situation of family caregivers and to examine to what extent DCCs can meet their need for support and respite. This study has a qualitative descriptive design using in-depth interviews with 17 family caregivers of people with dementia attending DCCs. The data analysis was undertaken using systematic text condensation. Caregivers experience a complex role, with added responsibilities, new tasks, and emotional and relational challenges that are expressed through distressing emotions and demands for interaction. Additionally, the caregiving role leads to positive experiences, such as acceptance and adaptation, support and help, and positive changes in the relationship. Day care relieves family caregivers by meeting the person with dementia's needs for social community, nutrition, physical activity, and structure and variety in everyday life. Using a DCC led to a higher quality of time spent together and easier cooperation, but it also produced some hard feelings and challenging situations. DCCs gave the caregivers a feeling of freedom and increased the time available to be spent on their own needs, to be social and to work or do practical tasks undisturbed. DCCs for people with dementia can give family caregivers support and relief and have a positive impact on the relationship between the family caregiver and the person with dementia. A more individualized program, in addition to flexible opening hours, would make DCCs even more effective as a respite service, positively influencing the family caregiver's motivation and ability to care and postponing the need for nursing home placement.
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Olsen, Cecilie Fromholt; Telenius, Elisabeth Wiken; Engedal, Knut; Bergland, Astrid
2015-09-14
There has been increasing interest in the use of non-pharmacological interventions, such as physical exercise, to improve the well-being of nursing home residents with dementia. For reasons regarding disease symptoms, persons with dementia might find it difficult to participate in exercise programs. Therefore, it is important to find ways to successfully promote regular exercise for patients in residential care. Several quantitative studies have established the positive effects of exercise on biopsychosocial factors, such as self-efficacy in older people; however, little is known regarding the qualitative aspects of participating in an exercise program among older people with dementia. From the perspective of residents, we explored the experiences of participating in a high-intensity functional exercise program among nursing home residents with dementia. The participants were eight elderly people with mild-to-moderate dementia. We conducted semi-structured interviews one week after they had finished a 10-week supervised high-intensity exercise program. We analyzed the data using an inductive content analysis. Five overreaching and interrelated themes emerged from the interviews: "Pushing the limits," "Being invested in," "Relationships facilitate exercise participation," "Exercise revives the body, increases independence and improves self-esteem" and "Physical activity is a basic human necessity--use it or lose it!" The results were interpreted in light of Bandura's self-efficacy theory. The exercise program seemed to improve self-efficacy through several mechanisms. By being involved, "being invested in" and having something expected of them, the participants gained a sense of empowerment in their everyday lives. The importance of social influences related to the exercise instructor and the exercise group was accentuated by the participants. The nursing home residents had, for the most part, positive experiences with regard to participating in the exercise program. The program seemed to increase their self-efficacy through several mechanisms. The instructor competence emerged as an important facilitating factor. The participants emphasized the importance of physical activity in the nursing home.
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Dementia-specific training for nursing home staff : A systematic literature review.
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.
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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.
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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.
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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.
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Teut, Michael; Bloedt, Susanne; Baur, Roland; Betsch, Frederik; Elies, Michael; Fruehwald, Maria; Fuesgen, Ingo; Kerckhoff, Annette; Krüger, Eckard; Schimpf, Dorothee; Schnabel, Katharina; Walach, Harald; Warme, Britta; Warning, Albercht; Wilkens, Johannes; Witt, Claudia M
2013-01-01
In Germany the number of inhabitants with dementia is expected to increase from 1.2 million at present to 2.3 million in 2050. Our aim was to investigate which treatments complementary and alternative medicine (CAM) experts consider to be of therapeutic use in developing treatment strategies and hypotheses for further clinical studies. In a participatory group workshop the 'World Café' method was used. As questions we asked: 1) 'Based on your clinical experience, which CAM therapies are effective in the treatment of patients with dementia? 2) Based on your clinical experience, which CAM therapies are effective in the treatment of lay and professional caregivers of patients with dementia?, and 3) How should a CAM treatment program look like?' Further Delphi rounds were used to reach consensus and summarize the results. The 2-day workshop took place in January 2012 in Berlin. A total of 17 experts participated. The most important subject in the treatment was the need to understand patients' biographies in order to individualize the therapy. Therapy itself consists of the therapeutic relationship, nonmedical therapies such as sports, massage, music and arts therapy as well as medical treatment such as herbal or homeopathic medicines. With regard to caregivers the most important aim is to prevent or reduce psychological distress, e.g., by mind-body programs. Instead of single treatments, more general elements such as understanding the patients' biographies, therapeutic relationships, individualizing, networking, and self-care emerged as main results. An integrative treatment program should connect outpatient and inpatient care as well as all experts. CAM training courses should be offered to doctors, nurses, and caregivers. Future clinical studies should focus on complex intervention programs integrating these key elements. © 2013 S. Karger GmbH, Freiburg.
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Sandberg, Linda; Borell, Lena; Edvardsson, David; Rosenberg, Lena; Boström, Anne-Marie
2018-01-01
An increasing number of older persons worldwide live at home with various functional limitations such as dementia. So, home care staff meet older persons with extensive, complex needs. The staff's well-being is crucial because it can affect the quality of their work, although literature on job strain among home care staff is limited. To describe perceived job strain among home care staff and to examine correlations between job strain, personal factors, and organizational factors. The study applied a cross-sectional survey design. Participants were dementia care specialists who work in home care (n=34) and other home care staff who are not specialized in dementia care (n=35). The Strain in Dementia Care Scale (SDCS) and Creative Climate Questionnaire instruments and demographic variables were used. Descriptive and inferential statistics (including regression modeling) were applied. The regional ethical review board approved the study. Home care staff perceived job strain - particularly because they could not provide what they perceived to be necessary care. Dementia care specialists ranked job strain higher (m=5.71) than other staff members (m=4.71; p =0.04). Job strain (for total score and for all five SDCS factors) correlated with being a dementia care specialist. Correlations also occurred between job strain for SDCS factor 2 (difficulties understanding and interpreting) and not having Swedish as first language and SDCS factor 5 (lack of recognition) and stagnated organizational climate. The study indicates that home care staff and particularly dementia care specialists perceived high job strain. Future studies are needed to confirm or reject findings from this study.
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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.
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Facilitating ADLs by Caregivers of Persons with Dementia: The C3P Model
Amella, Elaine J.; Batchelor-Aselage, Melissa B.
2015-01-01
The purpose of this paper is to explicate a change model for caregivers of persons with dementia to assist them in facilitating meals in the home, at community-based programs and in institutional settings. Building on a Social Ecological Model, the C3P Model—Change the Person, Change the People, Change the Place offers a clear method to adapt care strategies to foster independence while providing appropriate support as the person with dementia cognitively and functionally declines. Meals are highly embedded within a culture and are ritualized events within a family requiring an individualized approach when modifications are needed. PMID:24354332
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ERIC Educational Resources Information Center
Kosteniuk, Julie G.; Morgan, Debra G.; O'Connell, Megan E.; Dal Bello-Haas, Vanina; Stewart, Norma J.
2016-01-01
Home care staff who provide housekeeping and personal care to individuals with dementia generally have lower levels of dementia care training compared with other health care providers. The study's purposes were to determine whether the professional role of home care staff in a predominantly rural region was associated with preferences for delivery…
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Exploratory study of Australian aged care staff knowledge and attitudes of later life sexuality.
Chen, Yung-Hui; Jones, Cindy; Osborne, Debora
2017-06-01
To explore aged care staff knowledge and attitudes towards later life sexuality and attitudes about intimacy in people with dementia. Fifty-two care staff working in two aged care facilities with secure dementia care units were recruited. Knowledge and attitudes on later life sexuality and attitudes towards later life sexuality in people with dementia were surveyed using the Aging Sexual Knowledge and Attitudes Scale and the selected eight items of the Staff Attitudes about Intimacy and Dementia, respectively. The results indicated that aged care staff knowledge of later life sexuality is inadequate, but attitudes towards later life sexuality and about intimacy and dementia were relatively permissive. Improving aged care staff knowledge of later life sexuality is needed. Continuing education and training should provide to support the expression of later life sexuality including those with dementia. © 2017 AJA Inc.
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ERIC Educational Resources Information Center
Lemieux-Charles, Louis; Chambers, Larry W.; Cockerill, Rhonda; Jaglal, Susan; Brazil, Kevin; Cohen, Carole; LeClair, Ken; Dalziel, Bill; Schulman, Barbara
2005-01-01
Purpose: The Dementia Care Networks' Study examined the effectiveness of four community-based, not-for-profit dementia networks. The study involved assessing the relationship between the types of administrative and service-delivery exchanges that occurred among the networked agencies and the network members' perception of the effectiveness of…
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Case management considerations of progressive dementia in a home setting.
Pierce, Mary Ellen
2010-01-01
Nursing theory, research, and best practice guidelines contribute substantially to the field of dementia care. Interventional plans are challenged most by those dementias considered progressive and deteriorative in nature, requiring ongoing reassessment and modification of care practices as the clinical course changes. The purpose of this article is to provide guidelines for case managers in the development of effective, individualized care plans for clients with progressive dementia residing in a home setting. The application of these guidelines is illustrated through the presentation of an actual case. The practice setting is a private home in the Pacific Northwest. Geriatric case management is provided by an RN case manager. Progressive dementia presents challenges to home care. Professional case management using comprehensive, holistic assessment, collaborative approaches, and best practice fundamentals serve to create an effective, individualized plan of care. The increasing geriatric population presents great opportunities for case managers in strategic management for creating successful home care models in clients with progressive dementia. Use of nursing diagnoses, dementia research, and collaborative approaches with families and other medical providers creates a viable alternative for clients with progressive dementia.
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For whom and for what the definition of severe dementia is useful: an EDCON consensus.
Byrne, E J; Benoit, M; Lopez Arrieta, J M; Geraldi, C; Koopmans, R; Rolland, Y; Sartorius, N; Stoppe, G; Robert, P
2008-12-01
The European Dementia Consensus Network (EDCON) is a special project of the Madariaga Foundation located in Brussels. The Madariaga Foundation seeks to facilitate collaboration between European countries and between the public and private sector. This paper will review the differences in the definitions of Severe Dementia and summarise the EDCON consensus on their implications for management. EDCON recommends that:--The attributes of the person suffering from dementia should be given as much attention (and are as important for care) as the severity of cognitive decline in dementia;--The dementia syndrome (particularly in it's severe form) is inadequately defined by criteria which only includes the domain of cognition;--Physical, legal, social and cultural factors defining the environment of patients and their families should be carefully examined and that the results of this examination should be used in conjunction with the results of the somatic and psychiatric assessment in planning care and placement of the patient;--patients with severe dementia should have access to palliative care; - family members should be included in the care plans for those with severe dementia who are in institutional care.
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Lühnen, Julia; Haastert, Burkhard; Mühlhauser, Ingrid; Richter, Tanja
2017-09-15
In Germany, the guardianship system provides adults who are no longer able to handle their own affairs a court-appointed legal representative, for support without restriction of legal capacity. Although these representatives only rarely are qualified in healthcare, they nevertheless play decisive roles in the decision-making processes for people with dementia. Previously, we developed an education program (PRODECIDE) to address this shortcoming and tested it for feasibility. Typical, autonomy-restricting decisions in the care of people with dementia-namely, using percutaneous endoscopic gastrostomy (PEG) or physical restrains (PR), or the prescription of antipsychotic drugs (AP)-were the subject areas trained. The training course aims to enhance the competency of legal representatives in informed decision-making. In this study, we will evaluate the efficacy of the PRODECIDE education program. A randomized controlled trial with a six-month follow-up will be conducted to compare the PRODECIDE education program with standard care, enrolling legal representatives (N = 216). The education program lasts 10 h and comprises four modules: A, decision-making processes and methods; and B, C and D, evidence-based knowledge about PEG, PR and AP, respectively. The primary outcome measure is knowledge, which is operationalized as the understanding of decision-making processes in healthcare affairs and in setting realistic expectations about benefits and harms of PEG, PR and AP in people with dementia. Secondary outcomes are sufficient and sustainable knowledge and percentage of persons concerned affected by PEG, FEM or AP. A qualitative process evaluation will be performed. Additionally, to support implementation, a concept for translating the educational contents into e-learning modules will be developed. The study results will show whether the efficacy of the education program could justify its implementation into the regular training curricula for legal representatives. Additionally, it will determine whether an e-learning course provides a valuable backup or even alternative learning strategy. TRN: ISRCTN17960111 , Date: 01/06/2017.
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Introducing Namaste Care to the hospital environment: a pilot study.
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.
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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.
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Taking Control of Alzheimer's Disease: A Training Evaluation
ERIC Educational Resources Information Center
Silverstein, Nina M.; Sherman, Robin
2010-01-01
The purpose of the current study was to evaluate a training program for persons with early-stage Alzheimer's disease and their care partners. Care partners were mailed two surveys, one for themselves and one for the person with dementia. Domains covered in the training included an overview of cognitive disorders, treatment of symptoms including…
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Brazil, Kevin; Carter, Gillian; Cardwell, Chris; Clarke, Mike; Hudson, Peter; Froggatt, Katherine; McLaughlin, Dorry; Passmore, Peter; Kernohan, W George
2018-03-01
In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.
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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.
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McCabe, Marita P; Mellor, David; Davison, Tanya E; Karantzas, Gery; von Treuer, Kathryn; O'Connor, Daniel W
2013-09-19
The high occurrence and under-treatment of clinical depression and behavioral and psychological symptoms of dementia (BPSD) within aged care settings is concerning, yet training programs aimed at improving the detection and management of these problems have generally been ineffective. This article presents a study protocol to evaluate a training intervention for facility managers/registered nurses working in aged care facilities that focuses on organisational processes and culture as well as knowledge, skills and self-efficacy. A Randomised Control Trial (RCT) will be implemented across 18 aged care facilities (divided into three conditions). Participants will be senior registered nurses and personal care attendants employed in the aged care facility. The first condition will receive the training program (Staff as Change Agents - Enhancing and Sustaining Mental Health in Aged Care), the second condition will receive the training program and clinical support, and the third condition will receive no intervention. Pre-, post-, 6-month and 12-month follow-up measures of staff and residents will be used to demonstrate how upskilling clinical leaders using our transformational training approach, as well as the use of a structured screening, referral and monitoring protocol, can address the mental health needs of older people in residential care. The expected outcome of this study is the validation of an evidence-based training program to improve the management of depression and BPSD among older people in residential care settings by establishing routine practices related to mental health. This relatively brief but highly focussed training package will be readily rolled out to a larger number of residential care facilities at a relatively low cost. Australia and New Zealand Clinical Trials Register (ANZCTR): The Universal Trial Number (UTN) is U1111-1141-0109.
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Bai, Xue; Kwok, Timothy C Y; Chan, Natalie Y T; Ho, Florence K Y
2013-09-01
The job satisfaction of live-in foreign domestic helpers (FDHs) may influence their caring motivation and the quality of care they provide, which may in turn affect the health status of care recipients. This study identifies the factors affecting job satisfaction of FDHs caring for people with dementia in Hong Kong, focusing especially on the role of FDHs' adaptation status, job self-efficacy and care recipients' situation. A total of 152 FDHs taking care of people with dementia were recruited from 6 day care centres for elderly people in Hong Kong when they attended with their care recipients. Data were collected from February to August 2011 and the response rate was 95%. Participants completed questionnaires which included measures of care recipients' dementia severity and disruptive behaviours, FDHs' demographic factors, personal adaptation status, caregiving self-efficacy and job satisfaction. Hierarchical regression analysis was conducted to analyse the data. The results showed that longer stay in Hong Kong, better fluency in Cantonese (local dialect), greater satisfaction in living conditions, higher caregiving self-efficacy and less disruptive behaviour of care recipients were independently associated with stronger job satisfaction in FDHs looking after people with dementia. On the basis of these findings, we would suggest that employers should consider helpers who have been in Hong Kong for a longer period of time and speak fluent Cantonese, and have previous experience of taking care of people with dementia. In addition, FDHs caring for people with dementia may benefit from carer training which improves their self-efficacy in dementia care. © 2013 Blackwell Publishing Ltd.
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The use of socially assistive robots for dementia care.
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.
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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.
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Dementia and Out-of-Pocket Spending on Health Care Services
Delavande, Adeline; Hurd, Michael D.; Martorell, Francisco; Langa, Kenneth M.
2014-01-01
Background High levels of out-of-pocket (OOP) spending for health care may lead patients to forego needed services and medications, as well as hamper their ability to pay for other essential goods. Dementia, because it leads to disability and the loss of independence may put patients and their families at risk for high OOP spending, especially for long-term care services. Methods We used data from the Aging, Demographics, and Memory Study, a nationally representative sub-sample (n=743) of the Health and Retirement Study, to determine whether individuals with dementia had higher self-reported OOP spending compared to those with cognitive impairment without dementia (CIND) and those with normal cognitive function. We also examined the relationship between dementia and utilization of dental care and prescription medications, two types of health care that are frequently paid for out-of-pocket. Multivariate and logistic regression models were used to adjust for the influence of potential confounders. Results After controlling for demographics and comorbidities, those with dementia had more than three times the yearly OOP spending compared to those with normal cognition ($8,216 for those with dementia vs. $2,570 for those with normal cognition, p<.01) Higher OOP spending for those with dementia was mainly driven by greater expenditures on nursing home care (p<.01). Dementia was not associated with the likelihood of visiting the dentist (p=0.76) or foregoing prescription medications due to cost (p=.34). Conclusions Dementia is associated with high levels of OOP spending, but not with the use of dental care or foregoing prescription medications, suggesting that excess OOP spending among those with dementia does not “crowd out” spending on these other health care services. PMID:23154049
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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.
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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.
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Sandberg, Linda; Borell, Lena; Edvardsson, David; Rosenberg, Lena; Boström, Anne-Marie
2018-01-01
Introduction An increasing number of older persons worldwide live at home with various functional limitations such as dementia. So, home care staff meet older persons with extensive, complex needs. The staff’s well-being is crucial because it can affect the quality of their work, although literature on job strain among home care staff is limited. Aim To describe perceived job strain among home care staff and to examine correlations between job strain, personal factors, and organizational factors. Methods The study applied a cross-sectional survey design. Participants were dementia care specialists who work in home care (n=34) and other home care staff who are not specialized in dementia care (n=35). The Strain in Dementia Care Scale (SDCS) and Creative Climate Questionnaire instruments and demographic variables were used. Descriptive and inferential statistics (including regression modeling) were applied. The regional ethical review board approved the study. Results Home care staff perceived job strain – particularly because they could not provide what they perceived to be necessary care. Dementia care specialists ranked job strain higher (m=5.71) than other staff members (m=4.71; p=0.04). Job strain (for total score and for all five SDCS factors) correlated with being a dementia care specialist. Correlations also occurred between job strain for SDCS factor 2 (difficulties understanding and interpreting) and not having Swedish as first language and SDCS factor 5 (lack of recognition) and stagnated organizational climate. Conclusion The study indicates that home care staff and particularly dementia care specialists perceived high job strain. Future studies are needed to confirm or reject findings from this study. PMID:29861636
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Cross-cultural differences in dementia: the Sociocultural Health Belief Model.
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.
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Dementia incidence trend over 1992-2014 in the Netherlands: Analysis of primary care data
van Bussel, Emma F.; Richard, Edo; Coloma, Preciosa M.; de Waal, Margot W. M.; van den Akker, Marjan; Nielen, Markus M. J.; van Boven, Kees; Busschers, Wim B.; van Gool, Willem A.
2017-01-01
Background Recent reports have suggested declining age-specific incidence rates of dementia in high-income countries over time. Improved education and cardiovascular health in early age have been suggested to be bringing about this effect. The aim of this study was to estimate the age-specific dementia incidence trend in primary care records from a large population in the Netherlands. Methods and findings A dynamic cohort representative of the Dutch population was composed using primary care records from general practice registration networks (GPRNs) across the country. Data regarding dementia incidence were obtained using general-practitioner-recorded diagnosis of dementia within the electronic health records. Age-specific dementia incidence rates were calculated for all persons aged 60 y and over; negative binomial regression analysis was used to estimate the time trend. Nine out of eleven GPRNs provided data on more than 800,000 older people for the years 1992 to 2014, corresponding to over 4 million person-years and 23,186 incident dementia cases. The annual growth in dementia incidence rate was estimated to be 2.1% (95% CI 0.5% to 3.8%), and incidence rates were 1.08 (95% CI 1.04 to 1.13) times higher for women compared to men. Despite their relatively low numbers of person-years, the highest age groups contributed most to the increasing trend. There was no significant overall change in incidence rates since the start of a national dementia program in 2003 (−0.025; 95% CI −0.062 to 0.011). Increased awareness of dementia by patients and doctors in more recent years may have influenced dementia diagnosis by general practitioners in electronic health records, and needs to be taken into account when interpreting the data. Conclusions Within the clinical records of a large, representative sample of the Dutch population, we found no evidence for a declining incidence trend of dementia in the Netherlands. This could indicate true stability in incidence rates, or a balance between increased detection and a true reduction. Irrespective of the exact rates and mechanisms underlying these findings, they illustrate that the burden of work for physicians and nurses in general practice associated with newly diagnosed dementia has not been subject to substantial change in the past two decades. Hence, with the ageing of Western societies, we still need to anticipate a dramatic absolute increase in dementia occurrence over the years to come. PMID:28267788
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The personal cost of dementia care in Japan: A comparative analysis of residence types.
Nakabe, Takayo; Sasaki, Noriko; Uematsu, Hironori; Kunisawa, Susumu; Wimo, Anders; Imanaka, Yuichi
2018-06-12
We aimed to quantify the personal economic burden of dementia care in Japan according to residence type. A cross-sectional online survey was conducted on 3841 caregivers of people with dementia. An opportunity cost approach was used to calculate informal care costs. All costs and the observed/expected (OE) ratio of costs were adjusted using patient sex, age, and care-needs levels, and compared among the residence types. The mean daily informal care time was 8.2 hours, and the mean monthly informal care costs for community-dwelling people with dementia were US$1559. The OE ratio for informal care costs in community-dwelling patients was higher than in institutionalized patients. The inclusion of informal care costs reduced the differences in total personal costs among the residence types. The economic burden of informal care should be considered when quantifying dementia care costs. Copyright © 2018 John Wiley & Sons, Ltd.
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Mental exercises for cognitive function: clinical evidence.
Kawashima, Ryuta
2013-01-01
The purpose of this study was to examine the beneficial effects of a new cognitive intervention program designed for the care and prevention of dementia, namely Learning Therapy. The training program used systematized basic problems in arithmetic and Japanese language as training tasks. In study 1, 16 individuals in the experimental group and 16 in the control group were recruited from a nursing home. In both groups, all individuals were clinically diagnosed with senile dementia of the Alzheimer type. In study 2, we performed a single-blind, randomized controlled trial in our cognitive intervention program of 124 community-dwelling seniors. In both studies, the daily training program using reading and arithmetic tasks was carried out approximately 5 days a week, for 15 to 20 minutes a day in the intervention groups. Neuropsychological measures were determined simultaneously in the groups both prior to and after six months of the intervention. The results of our investigations indicate that our cognitive intervention using reading and arithmetic problems demonstrated a transfer effect and they provide convincing evidence that cognitive training maintains and improves the cognitive functions of dementia patients and healthy seniors.
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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.
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Managing Behavioral Symptoms in Dementia Using Nonpharmacologic Approaches: An Overview
Gitlin, Laura N.; Kales, Helen C.; Lyketsos, Constantine G.
2013-01-01
Behavioral symptoms such as repetitive statements and questions, wandering, and sleep disturbances are a core clinical feature of Alzheimer disease and related dementias, affecting patients and their families. These behaviors have devastating effects. If untreated, they can contribute to more rapid disease progression, earlier nursing home placement, worse quality of life, accelerated functional decline, greater caregiver distress, and higher health care utilization and costs. Patients with dementia are typically not screened for behavioral symptoms in primary care and even when clinically reported, tend to receive ineffective, inappropriate, and fragmented care. Yet, clinicians are often called upon to address behaviors that place the patient or others at risk or which families encounter as problematic. It is important to include on-going systematic screening for behavioral symptoms to facilitate prevention and early treatment as part of standard comprehensive dementia care. When identified, behaviors should be characterized and underlying causes sought in order to derive a treatment plan. Because available pharmacologic treatments used to treat behaviors have modest efficacy at best, are associated with notable risks, and do not address behaviors most distressing for families, nonpharmacologic options are recommended as first-line treatments or if necessary, in parallel with pharmacologic or other treatment options. Nonpharmacologic treatments may include a general approach (caregiver education and training in problem solving, communication and task simplification skills, patient exercise, and/or activity programs), or a targeted approach in which precipitating conditions of a specific behavior are identified and modified (eg, implementing nighttime routines to address sleep disturbances). Using the case of Mr A, we characterize common behavioral symptoms of dementia and describe an assessment strategy for selecting evidence-based nonpharmacologic treatments. We highlight the clinician's important role in facilitating collaboration with specialists and other health care professionals to implement nonpharmacological treatment plans. Substantial evidence shows that nonpharmacologic approaches can yield high levels of patient and caregiver satisfaction, quality of life improvements, and reductions in behavioral symptoms. Although access to nonpharmacologic approaches is currently limited, they should be part of standard dementia care. PMID:23168825
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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.
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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.
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Coll-Planas, Laura; Watchman, Karen; Doménech, Sara; McGillivray, David; O'Donnell, Hugh; Tolson, Debbie
2017-04-01
Loneliness is a common experience within long-term care and, to promote well-being and quality of life among people with dementia, it is important to draw upon a repertoire of strategies that provide social stimulation, companionship, and enjoyment. This paper describes and reflects on a program of co-operative social participatory research that sought to introduce football-focused (ie, soccer-based) reminiscence based in 4 community settings within Spain and Scotland. Findings are reported and inform an original conceptual model that supports the introduction of sustainable approaches to the development of football-focused reminiscence with and for people with dementia. Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
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Hsu, Ming Hung; Flowerdew, Rosamund; Parker, Michael; Fachner, Jörg; Odell-Miller, Helen
2015-07-18
Previous research highlights the importance of staff involvement in psychosocial interventions targeting neuropsychiatric symptoms of dementia. Music therapy has shown potential effects, but it is not clear how this intervention can be programmed to involve care staff within the delivery of patients' care. This study reports initial feasibility and outcomes from a five month music therapy programme including weekly individual active music therapy for people with dementia and weekly post-therapy video presentations for their carers in care homes. 17 care home residents and 10 care staff were randomised to the music therapy intervention group or standard care control group. The cluster randomised, controlled trial included baseline, 3-month, 5-month and post-intervention 7-month measures of residents' symptoms and well-being. Carer-resident interactions were also assessed. Feasibility was based on carers' feedback through semi-structured interviews, programme evaluations and track records of the study. The music therapy programme appeared to be a practicable and acceptable intervention for care home residents and staff in managing dementia symptoms. Recruitment and retention data indicated feasibility but also challenges. Preliminary outcomes indicated differences in symptoms (13.42, 95 % CI: [4.78 to 22.07; p = 0.006]) and in levels of wellbeing (-0.74, 95 % CI: [-1.15 to -0.33; p = 0.003]) between the two groups, indicating that residents receiving music therapy improved. Staff in the intervention group reported enhanced caregiving techniques as a result of the programme. The data supports the value of developing a music therapy programme involving weekly active individual music therapy sessions and music therapist-carer communication. The intervention is feasible with modifications in a more rigorous evaluation of a larger sample size. Clinicaltrials.gov, number NCT01744600.
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Nguyen, Mynhi; Pachana, Nancy A; Beattie, Elizabeth; Fielding, Elaine; Ramis, Mary-Anne
2015-11-01
The objective of this review is to identify and appraise existing evidence regarding the effectiveness of interventions designed to enhance staff-family relationships for people with dementia living in residential aged care facilities.More specifically, the objectives are to identify the effectiveness of constructive communication, cooperation programs, and practices or strategies to enhance family-staff relationships. The effectiveness of these interventions will be measured by comparing the intervention to no intervention, comparing one intervention with another, or comparing pre- and post-interventions.Specifically the review question is: What are the most effective interventions for improving communication and cooperation to enhance family-staff relationships in residential aged care facilities? In our aging world, dementia is prevalent and is a serious health concern affecting approximately 35.6 million people worldwide. This figure is expected to increase two-fold by 2030 and three-fold by 2050. Although younger-onset dementia is increasingly recognized, dementia is most commonly a disease that affects the elderly. Among those aged 65 to 85, the prevalence of dementia increases exponentially, and doubles with every five-year increase in age.Dementia is defined as a syndrome, commonly chronic or progressive in nature, and caused by a range of brain disorders that affect memory, thinking and the ability to perform activities of daily living. While the rate of progression and manifestation of decline differs, all cases of dementia share a similar trajectory of decline. The progressive decline in cognitive functions and ultimately physical function that these people face affects not only the person with the disease but also their family caregivers and health care staff.The manifestation of dementia presents unique and extreme challenges for the family caregiver. Generally it causes great physical, emotional and social strain because the caregiving process is long in duration, unfamiliar, unpredictable and ambiguous. In the later stages of dementia, many family caregivers relocate their relative to a residential aged care facility, most often when the burden of care outweighs the means of the caregiver. This is especially likely when the person with dementia ages, and has lower cognitive function increased limitations in activities in daily living and poorer self-related health. As a result, approximately 50% of all persons aged 65 years or over admitted into residential aged care facilities have dementia.The relocation of a relative into a residential aged care facility can be complex and distressing for family caregivers. While relocation alleviates many issues for the family caregiver, it does not consequently reduce their stress. The stress experienced by the family caregivers who remain involved post-relocation often continues and may even worsen. This is because family caregivers are uncertain about how to transition from a direct caregiving role to a more indirect, supportive interpersonal role, and may be provided with little support from care staff in this regard. Although family caregivers experience a new form of stress post-relocation, family involvement in residential aged care settings has been shown to be beneficial to residents with dementia, their families and care staff.Family involvement is widely acknowledged to provide the resident physical and emotional healing, optimal well-being, and the sustainment of quality of life. Family caregivers benefit from improved satisfaction with the facility and experiences of care, and greater well-being. Care staff benefit from enhanced job satisfaction and greater motivation to remain in their job. The key to these positive outcomes is effective communication and strong relationships between care staff and family caregivers.Effective communication between care staff and family caregivers is crucial for residents with dementia. This is because residents with cognitive impairment may have difficulties articulating their needs, concerns and preferences effectively. Family caregivers rely on staff for information about their relative's behavior in the residential aged care facility; however they themselves have in-depth information about the resident's physical, psychosocial and emotional histories that are necessary for developing individualized care support plans. Family involvement can support care staff in reducing residents' behavioral symptoms by assisting to identify social and emotional needs, or unmet medical needs. Ineffective communication from family caregivers in conveying information to care staff may be disruptive in the caregiving process, and may lead to disagreement regarding respective roles and approaches to caring for the resident. Consequently, family caregivers may withhold information that may support care staff and improve care. They may also be concerned about negative repercussions for the resident.Care staff and family caregivers generally have differing needs and expectations. Care staff are usually in the position where they have to manage a relationship with the family, which is based on multiple roles. Perceptions of family caregivers by care staff include seeing them as colleagues, subordinates, or people who themselves may be in need of nursing care. These different perceptions lead to role ambiguity and result in separate approaches to the caregiving process.Cohen et al. suggest in their study that family involvement can benefit people with dementia in residential aged care settings, their family carers and staff; however further research is required. The relationship between care staff and family caregivers is often challenging due to problems with communication, role ambiguity of both care staff and family carers, and differing approaches to caring for the resident. These problems highlight the need for interventions to constructively enhance the quality of family-staff relationships. For example, one intervention called Partners and Caregiving has been reported as being designed to increase cooperation and effective communication between staff and family. In this study, staff and family members were randomly subjected to treatment and control conditions. The treatment group received parallel training sessions on communication and conflict resolution techniques, followed by a joint meeting with the facility administrators. The results of the study demonstrated improved outcomes in the form of improved attitudes of staff and family members towards each other, less conflict between family and staff, and fewer intentions of staff to quit. Further research is vital in order to identify effective family-staff intervention studies that can provide directions for implementation in residential aged care facilities. Furthermore, it is equally important to identify interventions that are ineffective, so as to provide insights into potential pitfalls to avoid in order to improve staff and family members' relationships and the provision of care to people living with dementia in the future.Previous systematic reviews have focused on factors associated with constructive family-staff relationships in caring for older adults in the institutional setting and the family's involvement in decision making for people with dementia in residential aged care facilites. This review will however specifically investigate interventions for improving communication and cooperation that promote effective family-staff relationships when caring for people with dementia living in residential aged care facilities.
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Implementing Montessori Methods for Dementia: A Scoping Review.
Hitzig, Sander L; Sheppard, Christine L
2017-10-01
A scoping review was conducted to develop an understanding of Montessori-based programing (MBP) approaches used in dementia care and to identify optimal ways to implement these programs across various settings. Six peer-reviewed databases were searched for relevant abstracts by 2 independent reviewers. Included articles and book chapters were those available in English and published by the end of January 2016. Twenty-three articles and 2 book chapters met the inclusion criteria. Four approaches to implementing MBP were identified: (a) staff assisted (n = 14); (b) intergenerational (n = 5); (c) resident assisted (n = 4); and (d) volunteer or family assisted (n = 2). There is a high degree of variability with how MBP was delivered and no clearly established "best practices" or standardized protocol emerged across approaches except for resident-assisted MBP. The findings from this scoping review provide an initial road map on suggestions for implementing MBP across dementia care settings. Irrespective of implementation approach, there are several pragmatic and logistical issues that need to be taken into account for optimal implementation. © The Author 2017. 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.
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Dutch psychogeriatric day-care centers: a qualitative study of the needs and wishes of carers.
de Jong, Jeltsje D; Boersma, F
2009-04-01
In the past day-care facilities for people with dementia were developed with little input from the users. As these facilities play an increasingly important role in the lives of the growing number of community-living persons with dementia and their caregivers, it now seems obvious to incorporate users' perspectives when establishing or optimizing day care. This study addresses the needs and wishes of informal caregivers when providing skilled psychogeriatric day-care in the Netherlands. This is a qualitative, exploratory study, based on interviews with family caregivers and professional focus groups as the primary data source. Using data from the interviews, the needs and wishes of carers were classed into three general domains: (1) approach to care - relating to shared and tailored care and confidence in professionals as well as the facility as important themes; (2) professional expertise - relating to the carers' need for education and information regarding dementia, available resources, as well as cooperation between professionals; and (3) the day program - concerning the content and structure of the day care. The interviews with the caregivers suggest that the relationship with day-care personnel is an important aspect of psychogeriatric day-care. Caregivers have high expectations regarding the expertise of professionals, but seem to be unaware of available resources and services. Professionals should play a more active role in providing education, advice and support. Above all, the attendees must have a positive experience of the day-care facilities and its activities.
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Palliative care in advanced dementia.
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.
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Family Caregiver Training Program (FCTP): A Randomized Controlled Trial.
DiZazzo-Miller, Rosanne; Winston, Kristin; Winkler, Sandra L; Donovan, Mary L
The purpose of this study was to examine the effectiveness of the Family Caregiver Training Program (FCTP) for caregivers of people with dementia. A random assignment control group research design with a 3-mo follow-up was implemented. Thirty-six family caregivers of people with dementia demonstrated an increase in activity of daily living (ADL) knowledge (p < .001) and maintenance of that knowledge 3 mo posttest. Caregiver confidence, regardless of group assignment, improved; however, it was not maintained. Burden, depression, and occupational performance and satisfaction remained unchanged for the intervention group; however, physical health as it pertained to quality of life improved 3 mo posttest (p < .001). Findings demonstrate that the FCTP can effectively provide knowledge to family caregivers on how to assist people with dementia with ADLs. Even when standard care was provided, there was limited information on ADLs that family caregivers faced daily. Copyright © 2017 by the American Occupational Therapy Association, Inc.
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ERIC Educational Resources Information Center
Baillie, Lesley; Merritt, Jane; Cox, Janet; Crichton, Nicola
2015-01-01
Older people who are living with dementia often need healthcare, including hospital admissions, due to additional health conditions. Caring for older people who are living with dementia is, therefore, a core nursing role. This study investigated student nurses' expectations of, and confidence about, caring for older people with dementia and the…
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Smith, Raymond; Ooms, Ann; Greenwood, Nan
2017-11-01
This article reports the findings of an evaluation of a training course for care workers who care for people with dementia in the community. Twenty-four care workers participated in the training which took place in London and Surrey, United Kingdom. The training had a significant positive impact on participants' confidence in understanding the experiences and social care needs of people with young onset dementia (YOD) and their families. Participants also perceived that the training would help them improve their working practice by furthering their understanding of practical approaches to supporting and caring for people with dementia in general. Additionally, participants reported many ways in which they perceived being able to specifically support and empower people with YOD. It was concluded that the short training course improved knowledge and confidence for care workers on dementia care, and specifically in understanding how to support people with YOD and their families. Dementia specific training should be considered by service managers as a way of potentially increasing care worker job satisfaction. Copyright © 2017 Elsevier Ltd. All rights reserved.
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Sung, Huei-Chuan; Lee, Wen-Li; Chang, Shu-Min; Smith, Graeme D
2011-06-01
This study aimed to explore nursing staff's attitudes and use of music for older people with dementia in long-term care facilities. Music has shown positive outcomes in managing behavioural symptoms of older people with dementia. Older people living in long-term care facilities often do not have access to trained music therapists. Nursing staff provide the majority of direct care for institutionalised older people with dementia, therefore, will be the most appropriate personnel to learn and implement music therapy for those with dementia. To date, no studies have explored nursing staff's attitudes and use of music for those with dementia. A cross-sectional research design was used. A convenience sample of 285 nursing staff caring for those with dementia in long-term care facilities in Taiwan were recruited. Participants received a self-administered questionnaire consisted of items exploring nursing staff's attitude and use of music for those with dementia. A total of 214 participants completed the questionnaires, giving a response rate of 75·1%. Most nursing staff held positive attitudes towards use of music for older people with dementia (mean=84·89, range 23-115), but only 30·6% (n=66) had used music for those with dementia in practice. The majority perceived that they had limited knowledge and skills about use of music (72·9%). Over half of the participants reported that they lacked resources and time to implement music therapy in practice. Nursing staff need more formal training to use music for those with dementia. Nursing staff can be the suitable personnel to learn easily and implement music therapy as a part of routine activity programmes for those with dementia. Appropriately trained nursing staff in long-term care facilities who use music therapy may help improve the mental health of older people with dementia. © 2011 Blackwell Publishing Ltd.
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Associations between Race and Dementia Status and the Quality of End-of-Life Care.
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.
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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.
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Roberts, Gail; Morley, Catherine; Walters, Wendy; Malta, Sue; Doyle, Colleen
2015-01-01
Person-centered models of dementia care commonly merge aspects of existing models with additional influences from published and unpublished evidence and existing government policy. This study reports on the development and evaluation of one such composite model of person-centered dementia care, the ABLE model. The model was based on building the capacity and ability of residents living with dementia, using environmental changes, staff education and organizational and community engagement. Montessori principles were also used. The evaluation of the model employed mixed methods. Significant behavior changes were evident among residents of the dementia care Unit after the model was introduced, as were reductions in anti-psychotic and sedative medication. Staff reported increased knowledge about meeting the needs of people with dementia, and experienced organizational culture change that supported the ABLE model of care. Families were very satisfied with the changes. Copyright © 2015 Elsevier Inc. All rights reserved.
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Health insurance status and the care of nursing home residents with advanced dementia.
Goldfeld, Keith S; Grabowski, David C; Caudry, Daryl J; Mitchell, Susan L
Nursing home residents with advanced dementia commonly experience burdensome and costly hospitalizations that may not extend survival or improve the quality of life. Fragmentation in health care has contributed to poor coordination of care for acutely ill nursing home residents. To compare patterns of care and quality outcomes for nursing home residents with advanced dementia covered by managed care with those covered by traditional fee-for-service Medicare. Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) was a prospective cohort study including 22 nursing homes in the Boston, Massachusetts, area that monitored 323 nursing home residents for 18 months to better understand the course of advanced dementia at or near the end of life. Data from CASCADE and Medicare were linked to determine the health insurance status of study participants. The health insurance status of the resident, either managed care or traditional fee for service. The outcomes included survival, symptoms related to comfort, treatment of pain and dyspnea, presence of pressure ulcers, presence of a do-not-hospitalize order, treatment of pneumonia, hospital transfer (admission or emergency department visit) for an acute illness, hospice referral, primary care visits, and family satisfaction with care. Residents enrolled in managed care (n = 133) were more likely to have do-not-hospitalize orders compared with those in traditional Medicare fee for service (n = 158) (63.7% vs 50.9%; adjusted odds ratio, 1.9; 95% CI, 1.1-3.4), were less likely to be transferred to the hospital for acute illness (3.8% vs 15.7%; adjusted odds ratio, 0.2; 95% CI, 0.1-0.5), had more primary care visits per 90 days (mean [SD], 4.8 [2.6] vs 4.2 [5.0]; adjusted rate ratio, 1.3; 95% CI, 1.1-1.6), and had more nurse practitioner visits (3.0 [2.1] vs 0.8 [2.6]; adjusted rate ratio, 3.0; 95% CI, 2.2-4.1). Survival, comfort, and other treatment outcomes did not differ significantly across groups. CONCLUSIONS AND RELEVANCE Medicare managed-care programs may offer a promising approach to ensure that nursing homes are able to provide appropriate, less burdensome, and affordable care, especially at the end of life.
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Kales, Helen C; Gitlin, Laura N; Lyketsos, Constantine G
2014-04-01
Noncognitive neuropsychiatric symptoms (NPS) of dementia (aggression, agitation, depression, anxiety, delusions, hallucinations, apathy, disinhibition) affect individuals with dementia nearly universally across dementia stages and etiologies. NPS are associated with poor outcomes for individuals with dementia and caregivers, including excess morbidity and mortality, greater healthcare use, and earlier nursing home placement, as well as caregiver stress, depression, and difficulty with employment. Although the Food and Drug Administration has not approved pharmacotherapy for NPS, psychotropic medications are frequently used to manage these symptoms, but in the few cases of proven pharmacological efficacy, significant risk of adverse effects may offset benefits. There is evidence of efficacy and limited potential for adverse effects of nonpharmacological treatments, typically considered first line, but their uptake as preferred treatments remains inadequate in real-world clinical settings. Thus, the field currently finds itself in a predicament in terms of management of these difficult symptoms. It was in this context that the University of Michigan Program for Positive Aging, working in collaboration with the Johns Hopkins Alzheimer's Disease Research Center and Center for Innovative Care in Aging sponsored and convened a multidisciplinary expert panel in Detroit, Michigan, in fall 2011 with three objectives: to define critical elements of care for NPS in dementia; to construct an approach describing the sequential and iterative steps of managing NPS in real-world clinical settings that can be used as a basis for integrating nonpharmacological and pharmacological approaches; and to discuss how the approach generated could be implemented in research and clinical care. © Published 2014. This article is a U.S. Government work and is in the public domain in the U.S.A.
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Stroke patients' experiences of sharing rooms with dementia patients in a nursing home.
Oh, Jinjoo
2006-09-01
The mixed units that place lucid and dementia patients in same rooms have been viewed to benefit the dementia patients. However, many studies report negative attitudes of lucid residents towards mixed units, and there is a scarcity of research which explores the experiences of lucid residents while sharing rooms with the dementia patients in extended care homes. Currently many special care nursing facilities have mixed units in Korea, suggesting a need to examine their effects especially on cognitively lucid patients. To explore lived experiences of stroke patients who were sharing rooms with patients with dementia in a nursing home. It was a qualitative study applying a phenomenological method to explore the experiences of stroke patients. Data were collected in a specialized nursing home in Korea. The nursing home provides free medical and nursing care to persons suffering either from dementia or stroke. Fourteen participants without cognitive deficit and who were sharing rooms with dementia patients were recruited through a purposive sampling. In-depth interviews Stroke patients sharing rooms with dementia patients were being seriously affected by intense, deeply disturbing, and persistent experiences. The experiences themselves seemed to evolve over time as each patient struggled on one's own to try to make sense out of what were happening. The stroke patients ended up having a sense of resignation and anger realizing that they had no power to change the policy or the situation. The stroke patients also were distraught about what were happening to themselves - change of their own character, continuous fear of becoming demented, and becoming to devalue life. They also became indifferent to others, and seemed to have lost motivation for activity resulting in a decreased or low activity level. Several personal and environmental factors were identified that tended to increase the level of suffering. We suggest that the whole concept of mixed units require further exploration, and there is a need for a comprehensive staff education program to help the staff become aware of the problems and provide support to patients. Orientation of stroke patients regarding dementia is also suggested.
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Drummond, Neil; Birtwhistle, Richard; Williamson, Tyler; Khan, Shahriar; Garies, Stephanie; Molnar, Frank
2016-01-01
The proportion of Canadians living with Alzheimer disease and related dementias is projected to rise, with an increased burden on the primary health care system in particular. Our objective was to describe the prevalence and management of dementia in a community-dwelling sample using electronic medical record (EMR) data from the Canadian Primary Care Sentinel Surveillance Network (CPCSSN), which consists of validated, national, point-of-care data from primary care practices. We used CPCSSN data as of Dec. 31, 2012, for patients 65 years and older with at least 1 clinical encounter in the previous 2 years. A validated case definition for dementia was used to calculate the national and provincial prevalence rates, to examine variations in prevalence according to age, sex, body mass index, rural or urban residence, and select comorbid conditions, and to describe patterns in the pharmacologic management of dementia over time at the provincial level. The age-standardized prevalence of dementia among community-dwelling patients 65 years and older was 7.3%. Prevalence estimates increased with age; they also varied between provinces, and upward trends were observed. Dementia was found to be associated with comorbid diabetes, depression, epilepsy and parkinsonism. Most of the patients with dementia did not have a prescription for a dementia-related medication recorded in their EMR between 2008 and 2012 inclusive. Those who had a prescription were most often prescribed donepezil by their primary care provider. Overall prevalence estimates for dementia based on EMR data in this sample managed in primary care were generally in line with previous estimates based on administrative data, survey results or clinical sources.
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Care and Service at Home for Persons With Dementia in Europe.
Bökberg, Christina; Ahlström, Gerd; Leino-Kilpi, Helena; Soto-Martin, Maria E; Cabrera, Esther; Verbeek, Hilde; Saks, Kai; Stephan, Astrid; Sutcliffe, Caroline; Karlsson, Staffan
2015-09-01
To describe available and utilized formal care and service at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries. A descriptive cross-country design concerning eight European countries as a part of the European research project RightTimePlaceCare. The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system. The mapping system consists of 50 types of care and service activities. Sixteen of the 50 predefined activities concerning care and service at home were selected for this study and subdivided into three categories, following the stages of dementia. Availability was reported to be higher than utilization, and the findings indicated more similarities than differences among the eight countries involved. Even though there were several available activities of "basic care and services" and "healthcare interventions," they were utilized by few in most countries. Furthermore, "specialized dementia care and services" were sparsely available and even more sparsely utilized in the participating countries. The findings indicated that persons with dementia in Europe received formal care and service on a general, basic level but seldom adjusted to their specific needs. This study describes the gap between service provision and utilization enabling nurses to develop individually adjusted care plans for persons with dementia during the progress of the disease. The findings do not include matters of quality of care or how to best organize effective care and services. However, the activities of care and services presented here should shed light on what room there is for improvement when it comes to enabling persons with dementia to go on living at home. © 2015 Sigma Theta Tau International.
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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.
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Join the Revolution: How Montessori for Aging and Dementia can Change Long-Term Care Culture.
Bourgeois, Michelle S; Brush, Jennifer; Elliot, Gail; Kelly, Anne
2015-08-01
Efforts to improve the quality of life of persons with dementia in long-term care through the implementation of various approaches to person-centered care have been underway for the past two decades. Studies have yielded conflicting reports evaluating the evidence for these approaches. The purpose of this article is to outline the findings of several systematic reviews of this literature, highlighting the areas of improvement needs, and to describe a new person-centered care model, DementiAbility Methods: The Montessori Way. This model focuses on the abilities, needs, interests, and strengths of the person and creating worthwhile and meaningful roles, routines, and activities for the person within a supportive physical environment. This is accomplished through gaining the commitment of the facility's leaders, training staff, and monitoring program implementation. The potential for a culture change in long-term care environments is dependent on the development and rigorous evaluation of person-centered care approaches. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.
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Wergeland, Jon N; Selbæk, Geir; Høgset, Lisbeth D; Söderhamn, Ulrika; Kirkevold, Øyvind
2014-03-01
The objective of this study was to (a) determine the prevalence of cognitive impairment, dementia, and neuropsychiatric symptoms (NPSs) among home-dwelling people, 70 years and older (70+ years), who receive domiciliary care, and (b) describe their use of psychotropic drugs. Few studies have investigated dementia among people receiving in-home care. A sample (N = 1,000) representative of people aged 70+ years receiving domiciliary care was randomly recruited for participation. A standardized interview with the participants and their next of kin were performed using well-established assessment scales. Two clinical experts independently diagnosed dementia according to ICD-10 criteria. Of the 415 participants (41.5%) with dementia according to ICD-10 criteria, 19.5% had a dementia diagnosis known to the patient themselves, their caregiver, or health workers in the domiciliary care service. In the previous month, 72.1% exhibited NPSs (21.1% rated as clinically significant), with depression (47.5%), apathy (33.7%), anxiety (33.0%), and irritability (31.1%) being the most common. Psychotropic drugs were regularly used by 40.1% of the sample. Antidepressants (p = 0.001) and cognitive enhancers (p < 0.001) were more often given to people with dementia than to those without dementia. Dementia and NPSs are highly prevalent among people who receive domiciliary care, and diagnostic disclosure is low. People with dementia constitute a distinct group with respect to NPSs and psychotropic drug use. Early detection and correct diagnosis might increase the understanding of their everyday challenges and enable families to alleviate consequences of dementia and NPSs.
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Feedback on end-of-life care in dementia: the study protocol of the FOLlow-up project.
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.
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Who Is Responsible? A Man With Dementia Wanders From Home, Is Hit by a Train, and Dies.
Young, Yuchi; Papenkov, Maksim; Nakashima, Taeko
2018-07-01
The impact of dementia and Alzheimer's disease extends far beyond the healthcare needs of the person with dementia. As the disease progresses, individuals with dementia often require ongoing formal or informal care for their basic daily routine because of behavior changes and continuing loss of cognitive function. Most of the care for people with dementia takes place at home, and the unpaid, informal caregivers are often spouses or other relatives. Providing long-term informal care at home for someone with dementia is psychologically, physically, and financially draining. The tragedy described in this case elucidates the far-reaching societal impact of dementia care and the implicit health policy considerations. In 2007, a 91-year-old Japanese man with dementia was in the care of his wife when he wandered from home, was hit by a train, and died, immediately affecting the Central Japan Railway Company operations and, subsequently, legal practice as well as Japanese elder care policy. The railway sued the man's wife and son for negligence and lost revenue, winning both trials at the local and district courts. This ruling shocked families and caregivers in Japan, where care for elderly parents traditionally falls on the oldest son, and brought attention to the complex issues related to dementia care. A decade later, we revisit this case to provoke a renewed dialogue about the matrix of responsibilities and liabilities associated with caregiving; to illuminate the unmet needs of the person with dementia, as well as his or her informal caregivers; and the financial implications related to long-term care policy. We close with 2 practical suggestions which preserve the dignity of the individual and provide reassurance for caregivers. Copyright © 2018 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
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Lorenz, Klara; Freddolino, Paul P; Comas-Herrera, Adelina; Knapp, Martin; Damant, Jacqueline
2017-01-01
The extent to which technology may be able to support people with dementia and their carers along the care pathway and in different care settings is of interest to policy makers and governments. In this paper we provide an overview of the role of technology in dementia care, treatment and support by mapping existing technologies - by function, target user and disease progression. Technologies identified are classified into seven functions: memory support, treatment, safety and security, training, care delivery, social interaction and other. Different groups of potential users are distinguished: people with mild cognitive impairment and early stages of dementia, people with moderate to severe dementia and unpaid carers and health- and social care professionals. We also identified the care settings, in which the technologies are used (or for which the technologies are developed): at home in the community and in institutional care settings. The evidence has been drawn from a rapid review of the literature, expert interviews and web and social media searches. The largest number of technologies identified aim to enhance the safety and security of people with dementia living in the community. These devices are often passive monitors, such as smoke detectors. Other safety interventions, such as panic buttons, require active intervention. The second largest number of interventions aims to enhance people's memory and includes global positioning systems devices and voice prompts. These technologies mostly target people in the early stages of dementia. A third group focusing on treatment and care delivery emerged from the literature. These interventions focus on technology-aided reminiscence or therapeutic aspects of care for people with dementia and their carers. While the review found a range of technologies available for people with dementia and carers there is very little evidence of widespread practical application. Instead, it appears that stakeholders frequently rely on everyday technologies re-purposed to meet their needs.
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Foley, Tony; Boyle, Siobhán; Jennings, Aisling; Smithson, W Henry
2017-05-22
Rising dementia prevalence rates rise combined with the policy objective of enabling people with dementia to remain living at home, means that there will be a growing demand for dementia care in the community setting. However, GPs are challenged by dementia care and have identified it as an area in which further training is needed. Previous studies of GPs dementia care educational needs have explored the views of GPs alone, without taking the perspectives of people with dementia and family carers into account. The aim of the study was to explore GPs' dementia care educational needs, as viewed from multiple perspectives, in order to inform the design and delivery of an educational programme for GPs. A qualitative study of GPs, people with dementia and family carers in a community setting was undertaken. Face-to-face interviews were performed with GPs, people with dementia and with family carers. Interviews were audio-recorded, transcribed verbatim and thematically analysed. Thirty-one people were interviewed, consisting of fourteen GPs, twelve family carers and five people with dementia. GPs expressed a wish for further education, preferentially through small group workshops. Five distinct educational needs emerged from the interviews, namely, diagnosis, disclosure, signposting of local services, counselling and the management of behavioural and psychological symptoms (BPSD). While GPs focused on diagnosis, disclosure and BPSD in particular, people with dementia and family carers emphasised the need for GPs to engage in counselling and signposting of local services. The triangulation of data from multiple relevant sources revealed a broader range of GPs' educational needs, incorporating both medical and social aspects of dementia care. The findings of this study will inform the content and delivery of a dementia educational programme for GPs that is practice-relevant, by ensuring that the curriculum meets the needs of GPs, patients and their families.
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Brown, Anna; Kirichek, Oksana; Balkwill, Angela; Reeves, Gillian; Beral, Valerie; Sudlow, Cathie; Gallacher, John; Green, Jane
2016-01-01
Electronic linkage of UK cohorts to routinely collected National Health Service (NHS) records provides virtually complete follow-up for cause-specific hospital admissions and deaths. The reliability of dementia diagnoses recorded in NHS hospital data is not well documented. For a sample of Million Women Study participants in England we compared dementia recorded in routinely collected NHS hospital data (Hospital Episode Statistics: HES) with dementia recorded in two separate sources of primary care information: a primary care database [Clinical Practice Research Datalink (CPRD), n = 340] and a survey of study participants' General Practitioners (GPs, n = 244). Dementia recorded in HES fully agreed both with CPRD and with GP survey data for 85% of women; it did not agree for 1 and 4%, respectively. Agreement was uncertain for the remaining 14 and 11%, respectively; and among those classified as having uncertain agreement in CPRD, non-specific terms compatible with dementia, such as 'memory loss', were recorded in the CPRD database for 79% of the women. Agreement was significantly better (p < 0.05 for all comparisons) for women with HES diagnoses for Alzheimer's disease (95 and 94% agreement with any dementia for CPRD and GP survey, respectively) and for vascular dementia (88 and 88%, respectively) than for women with a record only of dementia not otherwise specified (70 and 72%, respectively). Dementia in the same woman was first mentioned an average 1.6 (SD 2.6) years earlier in primary care (CPRD) than in hospital (HES) data. Age-specific rates for dementia based on the hospital admission data were lower than the rates based on the primary care data, but were similar if the delay in recording in HES was taken into account. Dementia recorded in routinely collected NHS hospital admission data for women in England agrees well with primary care records of dementia assessed separately from two different sources, and is sufficiently reliable for epidemiological research.
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Primary Care Physicians' Dementia Care Practices: Evidence of Geographic Variation
ERIC Educational Resources Information Center
Fortinsky, Richard H.; Zlateva, Ianita; Delaney, Colleen; Kleppinger, Alison
2010-01-01
Purpose: This article explores primary care physicians' (PCPs) self-reported approaches and barriers to management of patients with dementia, with a focus on comparisons in dementia care practices between PCPs in 2 states. Design and Methods: In this cross-sectional study, questionnaires were mailed to 600 randomly selected licensed PCPs in…
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Comparison of Informal Care Time and Costs in Different Age-Related Dementias: A Review
Costa, Nadège; Ferlicoq, Laura; Derumeaux-Burel, Hélène; Rapp, Thomas; Garnault, Valérie; Gillette-Guyonnet, Sophie; Andrieu, Sandrine; Vellas, Bruno; Lamure, Michel; Grand, Alain; Molinier, Laurent
2013-01-01
Objectives. Age-related dementia is a progressive degenerative brain syndrome whose prevalence increases with age. Dementias cause a substantial burden on society and on families who provide informal care. This study aims to review the relevant papers to compare informal care time and costs in different dementias. Methods. A bibliographic search was performed on an international medical literature database (MEDLINE). All studies which assessed the social economic burden of different dementias were selected. Informal care time and costs were analyzed in three care settings by disease stages. Results. 21 studies met our criteria. Mean informal care time was 55.73 h per week for Alzheimer disease and 15.8 h per week for Parkinson disease (P = 0.0076), and the associated mean annual informal costs were $17,492 versus $3,284, respectively (P = 0.0393). Conclusion. There is a lack of data about informal care time and costs among other dementias than AD or PD. Globally, AD is the most costly in terms of informal care costs than PD, $17,492 versus $3,284, respectively. PMID:23509789
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Sense of competence in dementia care staff (SCIDS) scale: development, reliability, and validity.
Schepers, Astrid Kristine; Orrell, Martin; Shanahan, Niamh; Spector, Aimee
2012-07-01
Sense of competence in dementia care staff (SCIDS) may be associated with more positive attitudes to dementia among care staff and better outcomes for those being cared for. There is a need for a reliable and valid measure of sense of competence specific to dementia care staff. This study describes the development and evaluation of a measure to assess "sense of competence" in dementia care staff and reports on its psychometric properties. The systematic measure development process involved care staff and experts. For item selection and assessment of psychometric properties, a pilot study (N = 37) and a large-scale study (N = 211) with a test-retest reliability (N = 58) sub-study were undertaken. The final measure consists of 17 items across four subscales with acceptable to good internal consistency and moderate to substantial test-retest reliability. As predicted, the measure was positively associated with work experience, job satisfaction, and person-centered approaches to dementia care, giving a first indication for its validity. The SCIDS scale provides a useful and user-friendly means of measuring sense of competence in care staff. It has been developed using a robust process and has adequate psychometric properties. Further exploration of the construct and the scale's validity is warranted. It may be useful to assess the impact of training and perceived abilities and skills in dementia care.
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Gallagher-Thompson, Dolores; Wang, Peng-Chih; Liu, Weiling; Cheung, Vinnie; Peng, Rebecca; China, Danielle; Thompson, Larry W
2010-04-01
Prior research (Gallagher-Thompson, D., Gray, H., Tang, P., Pu, C.-Y., Tse, C., Hsu, S., et al. (2007). Impact of in-home intervention versus telephone support in reducing depression and stress of Chinese caregivers: Results of a pilot study. American Journal of Geriatric Psychiatry, 15, 425-434.) found that an in-home behavioral management program, derived conceptually from cognitive behavioral theories (CBT), was effective in reducing caregiver related stress and depressive symptoms in Chinese American dementia caregivers (CGs). Results were promising, but a more cost-effective intervention is needed to serve this growing population. Past work also found that a psychoeducational videotaped training program based on CBT was effective in reducing stress due to caregiving in Caucasian and African American dementia family CGs (Steffen, 2000, Anger management for dementia caregivers: A preliminary study using video and telephone interventions. Behavior Therapy, 31, 281-299.). To date no research has been conducted using a technological medium to deliver a similar kind of intervention to Chinese American caregivers. The present study evaluated the effectiveness of a similar but culturally "tailored" program in which 70 CGs were randomly assigned to a 12-week CBT skill training program delivered on a DVD, or to a general educational DVD program on dementia. Both were available in Mandarin Chinese or English as preferred. Pre post change analyses indicated that CGs did not differ on change in level of negative depressive symptoms, but positive affect was higher, and patient behaviors were appraised as less stressful and bothersome, for CGs in the CBT skill training program. They were also more satisfied with the program overall and reported that they believed they were able to give care more effectively. Results encourage further development of theoretically based interventions, delivered using modern technology, for this ever increasing group of CGs.
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Reframing Person-Centered Nursing Care for Persons With Dementia
Penrod, Janice; Yu, Fang; Kolanowski, Ann; Fick, Donna M.; Loeb, Susan J.; Hupcey, Judith E.
2010-01-01
Alzheimer’s dementia manifests in a complex clinical presentation that has been addressed from both biomedical and phenomenological perspectives. Although each of these paradigmatic perspectives has contributed to advancement of the science, neither is adequate for theoretically framing a person-centered approach to nursing care. The need-driven dementia-compromised behavior (NDB) model is discussed as an exemplar of midrange nursing theory that promotes the integration of these paradigmatic views to promote a new level of excellence in person-centered dementia care. Clinical application of the NDB promotes a new level of praxis, or thoughtful action, in the care of persons with dementia. PMID:17378465
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Time providing care outside visits in a home-based primary care program
Pedowitz, Elizabeth J.; Ornstein, Katherine A.; Farber, Jeffrey; DeCherrie, Linda V.
2016-01-01
Background/Objectives Homebound elderly patients with chronic medical illnesses face multiple barriers to care. Primary care physicians (PCPs) devote a significant amount of time to care apart from actual office visits, but there is little quantification of such time by physicians who provide primary care in the home. This article assesses exactly how much time physicians in a large home based primary care (HBPC) program spend providing care outside of home visits. Unreimbursed time, as well as patient and provider-related factors that may contribute to that increased time, are considered. Design Mount Sinai Visiting Doctors (MSVD) providers filled out research forms for every interaction involving care provision outside of home visits. Data collected included: length of interaction, mode, nature, and whom the interaction was with for 3 weeks. Setting/Participants MSVD is an academic home-visit program in Manhattan, NY. All PCPs in MSVD (n=14) agreed to participate. Measurements Time data were analyzed using a comprehensive estimate and conservative estimates to quantify unbillable time. Results Data on 1151 interactions for 537 patients were collected. An average 8.2 hours/week were spent providing non-home visit care for a full-time provider. Using the most conservative estimates, 3.6 hours/week was estimated to be unreimbursed per full-time provider. No significant differences in interaction times were found among dementia vs. non-dementia patients, new vs. non-new patients, and primary-panel vs. covered patients. Conclusion Findings suggest that HBPC providers spend substantial time providing care outside home visits, much of which goes unrecognized in the current reimbursement system. These findings may help guide practice development and creation of new payment systems for HBPC and similar models of care. PMID:24802078
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Gitlin, Laura N.; Piersol, Catherine Verrier; Hodgson, Nancy; Marx, Katherine; Roth, David L.; Johnson, Deidre; Samus, Quincy; Pizzi, Laura; Jutkowitz, Eric; Lyketsos, Constantine G.
2016-01-01
Among over 5 million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, , identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6 months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3 months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6 months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS. PMID:27339865
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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.
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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
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The behaviours that dementia care home staff in South Africa find challenging: An exploratory study.
van Wyk, Adele; Manthorpe, Jill; Clark, Charlotte
2017-10-01
Background Behavioural and psychological symptoms of dementia are often the reasons for moving to a care home. Care staff, often with limited dementia training, may have to support residents with distressed behaviour on a daily basis. Evidence about the support of residents with distressed or challenging behaviour in the South African context is lacking. This exploratory study aimed to gain an understanding of what care home staff perceived to be distressed behaviour, their coping strategies and how they learned to work with residents with behavioural symptoms of dementia. Methods An exploratory study was conducted among 17 participants working in four care homes in the Western Cape province of South Africa in 2014. Semi-structured interviews were audio-recorded. Data were analysed thematically. Findings Findings reflected the literature with regard to examples of behavioural symptoms of people with dementia that staff find challenging to manage. Overall, the majority of staff reported holding positive feelings about working with people with dementia. All preferred interpersonal approaches to manage distressed behaviour above medication although a small minority noted the use of medication in some cases. Dementia training was considered by most participants as an unmet need. Conclusion This exploratory study identified care home workers' desires for training about dementia and their preferences for interpersonal as opposed to pharmacological approaches to managing residents' distressed behaviour. The legacy of race and cultural perspectives in South Africa appears to still influence care practice and provision. Staff commitment, their interest in advancing their practice and their aspirations to offer more person-centred care were evident. Dementia training was identified as potentially helpful to care home staff who manage residents' distressed behaviour. Training should be developed in South Africa to promote good practice.
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Family caregivers’ role implementation at different stages of dementia
Huang, Huei-Ling; Shyu, Yea-Ing L; Chen, Min-Chi; Huang, Chin-Chang; Kuo, Hung-Chou; Chen, Sien-Tsong; Hsu, Wen-Chuin
2015-01-01
Purpose The purpose of this study was to explore family caregivers’ role-implementation experiences at different stages of dementia. Patients and methods For this cross-sectional, exploratory study, 176 dyads of family caregivers and their community-dwelling elderly relatives with dementia were recruited from the neurological clinics of a medical center in Taiwan. The Family Caregiving Inventory was used to assess family caregivers for caregiving activities, role strain, role preparation, and help from others at different stages of care receivers’ dementia. Results Family caregivers’ caregiving activities were related to patients’ stages of dementia. For patients with mild dementia, caregivers provided more assistance in transportation and housekeeping. In addition to these two activities, family caregivers of patients with moderate dementia provided more assistance with mobility and protection. For patients with severe dementia, family caregivers provided more assistance with personal care, mobility and protection, transportation, and housekeeping. Overall, family caregivers reported having some preparation to provide care; the most difficult caregiving activity was identified as managing behavioral problems. Conclusion This study’s results provide a knowledge base for designing dementia stage-specific interventions in clinical practice and developing community-based, long-term care systems for families of patients with dementia. PMID:25584022
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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
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Beer, Christopher; Horner, Barbara; Almeida, Osvaldo P; Scherer, Samuel; Lautenschlager, Nicola T; Bretland, Nick; Flett, Penelope; Schaper, Frank; Flicker, Leon
2009-08-12
Residential care is important for older adults, particularly for those with advanced dementia and their families. Education interventions that achieve sustainable improvement in the care of older adults are critical to quality care. There are few systematic data available regarding the educational needs of Residential Care Facility (RCF) staff and General Practitioners (GPs) relating to dementia, or the sustainability of educational interventions. We sought to determine participation in dementia education, perceived levels of current knowledge regarding dementia, perceived unmet educational needs, current barriers, facilitators and preferences for dementia education. A mixed methods study design was utilised. A survey was distributed to a convenience sample of general practitioners, and staff in 223 consecutive residential care facilities in Perth, Western Australia. Responses were received from 102 RCF staff working in 10 facilities (out of 33 facilities who agreed to distribute the survey) and 202 GPs (19% of metropolitan GPs). Quantitative survey data were summarised descriptively and chi squared statistics were used to analyse the distribution of categorical variables. Qualitative data were collected from general practitioners, staff in residential care facilities and family carers of people with dementia utilizing individual interviews, surveys and focus groups. Qualitative data were analysed thematically. Among RCF staff and GPs attending RCF, participation in dementia education was high, and knowledge levels generally perceived as good. The individual experiences and needs of people with dementia and their families were emphasised. Participants identified the need for a person centred philosophy to underpin educational interventions. Limited time was a frequently mentioned barrier, especially in relation to attending dementia care education. Perceived educational needs relating to behaviours of concern, communication, knowledge regarding dementia, aspects of person centred care, system factors and the multidisciplinary team were consistently and frequently cited. Small group education which is flexible, individualized, practical and case based was sought. The effectiveness and sustainability of an educational intervention based on these findings needs to be tested. In addition, future interventions should focus on supporting cultural change to facilitate sustainable improvements in care.
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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
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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.
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The 'ripple effect': Towards researching improvisational music therapy in dementia care homes.
Pavlicevic, Mercédès; Tsiris, Giorgos; Wood, Stuart; Powell, Harriet; Graham, Janet; Sanderson, Richard; Millman, Rachel; Gibson, Jane
2015-09-01
Increased interest in, and demand for, music therapy provision for persons with dementia prompted this study's exploration of music therapists' strategies for creating musical communities in dementia care settings, considering the needs and resources of people affected by dementia. Focus group discussions and detailed iterative study of improvisational music therapy work by six experienced practitioners clarify the contextual immediacy and socio-musical complexities of music therapy in dementia care homes. Music therapy's 'ripple effect', with resonances from micro (person-to-person musicking), to meso (musicking beyond 'session time') and macro level (within the care home and beyond), implies that all who are part of the dementia care ecology need opportunities for flourishing, shared participation, and for expanded self-identities; beyond 'staff', 'residents', or 'being in distress'. On such basis, managers and funders might consider an extended brief for music therapists' roles, to include generating and maintaining musical wellbeing throughout residential care settings. © The Author(s) 2013.
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Best practice in caring for adults with dementia and learning disabilities.
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.
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Petrazzuoli, Ferdinando; Vinker, Shlomo; Koskela, Tuomas H; Frese, Thomas; Buono, Nicola; Soler, Jean Karl; Ahrensberg, Jette; Asenova, Radost; Foguet Boreu, Quintí; Ceyhun Peker, Gülsen; Collins, Claire; Hanževački, Miro; Hoffmann, Kathryn; Iftode, Claudia; Kurpas, Donata; Le Reste, Jean Yves; Lichtwarck, Bjørn; Petek, Davorina; Pinto, Daniel; Schrans, Diego; Streit, Sven; Tang, Eugene Yee Hing; Tatsioni, Athina; Torzsa, Péter; Unalan, Pemra C; van Marwijk, Harm; Thulesius, Hans
2017-09-01
Strategies for the involvement of primary care in the management of patients with presumed or diagnosed dementia are heterogeneous across Europe. We wanted to explore attitudes of primary care physicians (PCPs) when managing dementia: (i) the most popular cognitive tests, (ii) who had the right to initiate or continue cholinesterase inhibitor or memantine treatment, and (iii) the relationship between the permissiveness of these rules/guidelines and PCP's approach in the dementia investigations and assessment. Key informant survey. Primary care practices across 25 European countries. Four hundred forty-five PCPs responded to a self-administered questionnaire. Two-step cluster analysis was performed using characteristics of the informants and the responses to the survey. Two by two contingency tables with odds ratios and 95% confidence intervals were used to assess the association between categorical variables. A multinomial logistic regression model was used to assess the association of multiple variables (age class, gender, and perceived prescription rules) with the PCPs' attitude of "trying to establish a diagnosis of dementia on their own." Discrepancies between rules/guidelines and attitudes to dementia management was found in many countries. There was a strong association between the authorization to prescribe dementia drugs and pursuing dementia diagnostic work-up (odds ratio, 3.45; 95% CI 2.28-5.23). Differing regulations about who does what in dementia management seemed to affect PCP's engagement in dementia investigations and assessment. PCPs who were allowed to prescribe dementia drugs also claimed higher engagement in dementia work-up than PCPs who were not allowed to prescribe.
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Surr, C A; Smith, S J; Crossland, J; Robins, J
2016-01-01
People with dementia occupy up to one quarter of acute hospital beds. However, the quality of care delivered to this patient group is of national concern. Staff working in acute hospitals report lack of knowledge, skills and confidence in caring for people with dementia. There is limited evidence about the most effective approaches to supporting acute hospital staff to deliver more person-centred care. This study aimed to evaluate the efficacy of a specialist training programme for acute hospital staff regarding improving attitudes, satisfaction and feelings of caring efficacy, in provision of care to people with dementia. A repeated measures design, with measures completed immediately prior to commencing training (T1), after completion of Foundation level training (T2: 4-6 weeks post-baseline), and following Intermediate level training (T3: 3-4 months post-baseline). One NHS Trust in the North of England, UK. 40 acute hospital staff working in clinical roles, the majority of whom (90%) were nurses. All participants received the 3.5 day Person-centred Care Training for Acute Hospitals (PCTAH) programme, comprised of two levels, Foundation (0.5 day) and Intermediate (3 days), delivered over a 3-4 months period. Staff demographics and previous exposure to dementia training were collected via a questionnaire. Staff attitudes were measured using the Approaches to Dementia Questionnaire (ADQ), satisfaction in caring for people with dementia was captured using the Staff Experiences of Working with Demented Residents questionnaire (SEWDR) and perceived caring efficacy was measured using the Caring Efficacy Scale (CES). The training programme was effective in producing a significant positive change on all three outcome measures following intermediate training compared to baseline. A significant positive effect was found on the ADQ between baseline and after completion of Foundation level training, but not for either of the other measures. Training acute hospital staff in Intermediate level person-centred dementia care is effective in producing significant improvements in attitudes towards and satisfaction in caring for people with dementia and feelings of caring efficacy. Foundation level training is effective in changing attitudes but does not seem to be sufficient to bring about change in satisfaction or caring efficacy. Copyright © 2015 Elsevier Ltd. All rights reserved.
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2018-01-01
Background Telegerontology is an approach using videoconferencing to connect an interdisciplinary team in a regional specialty center to patients in rural communities, which is becoming increasingly practical for addressing current limitations in rural community-based dementia care. Objective Using the remotely-delivered expertise of the Telegerontology dementia care team, we aim to enhance the caregiver/patient/physician triad and thereby provide the necessary support for the person with dementia to “age in place.” Methods This is a cluster randomized feasibility trial with four rural regions in the province of Newfoundland and Labrador, Canada (2 regions randomly assigned to “intervention” and 2 to “control”). The study population includes 22 “dementia triads” that consist of a community-dwelling older Canadian with moderate to late dementia, their family caregivers, and their Primary Care Physician (PCP). Over the 6-month active study period, all participants will be provided an iPad. The intervention is intended as an adjunct to existing PCP care, consisting of weekly Skype-based videoconferencing calls with the Telegerontology physician, and other team members as needed (occupational therapist, physical therapist etc). Control participants receive usual community-based dementia care with their PCP. A baseline (pre-) assessment will be performed during a home visit with the study team. Post intervention, 6- and 12-month follow-up assessments will be collected remotely using specialized dementia monitoring applications and Skype calls. Primary outcomes include admission to long-term care, falls, emergency room visits, hospital stays, and caregiver burden. Results Results will be available in March of 2018. Conclusions Results from this study will demonstrate a novel approach to dementia care that has the potential to impact both rural PCPs, family caregivers, and people with dementia, as well as provide evidence for the utility of Telegerontology in models of eHealth-based care. PMID:29472178
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Wallack, Elizabeth M; Harris, Chelsea; Ploughman, Michelle; Butler, Roger
2018-02-22
Telegerontology is an approach using videoconferencing to connect an interdisciplinary team in a regional specialty center to patients in rural communities, which is becoming increasingly practical for addressing current limitations in rural community-based dementia care. Using the remotely-delivered expertise of the Telegerontology dementia care team, we aim to enhance the caregiver/patient/physician triad and thereby provide the necessary support for the person with dementia to "age in place." This is a cluster randomized feasibility trial with four rural regions in the province of Newfoundland and Labrador, Canada (2 regions randomly assigned to "intervention" and 2 to "control"). The study population includes 22 "dementia triads" that consist of a community-dwelling older Canadian with moderate to late dementia, their family caregivers, and their Primary Care Physician (PCP). Over the 6-month active study period, all participants will be provided an iPad. The intervention is intended as an adjunct to existing PCP care, consisting of weekly Skype-based videoconferencing calls with the Telegerontology physician, and other team members as needed (occupational therapist, physical therapist etc). Control participants receive usual community-based dementia care with their PCP. A baseline (pre-) assessment will be performed during a home visit with the study team. Post intervention, 6- and 12-month follow-up assessments will be collected remotely using specialized dementia monitoring applications and Skype calls. Primary outcomes include admission to long-term care, falls, emergency room visits, hospital stays, and caregiver burden. Results will be available in March of 2018. Results from this study will demonstrate a novel approach to dementia care that has the potential to impact both rural PCPs, family caregivers, and people with dementia, as well as provide evidence for the utility of Telegerontology in models of eHealth-based care. ©Elizabeth M. Wallack, Chelsea Harris, Michelle Ploughman, Roger Butler. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 22.02.2018.
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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.
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Quality of life in dementia patients: nursing home versus home care.
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.
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Societal and Family Lifetime Cost of Dementia: Implications for Policy.
Jutkowitz, Eric; Kane, Robert L; Gaugler, Joseph E; MacLehose, Richard F; Dowd, Bryan; Kuntz, Karen M
2017-10-01
To estimate the cost of dementia and the extra cost of caring for someone with dementia over the cost of caring for someone without dementia. We developed an evidence-based mathematical model to simulate disease progression for newly diagnosed individuals with dementia. Data-driven trajectories of cognition, function, and behavioral and psychological symptoms were used to model disease progression and predict costs. Using modeling, we evaluated lifetime and annual costs of individuals with dementia, compared costs of those with and without clinical features of dementia, and evaluated the effect of reducing functional decline or behavioral and psychological symptoms by 10% for 12 months (implemented when Mini-Mental State Examination score ≤21). Mathematical model. Representative simulated U.S. incident dementia cases. Value of informal care, out-of-pocket expenditures, Medicaid expenditures, and Medicare expenditures. From time of diagnosis (mean age 83), discounted total lifetime cost of care for a person with dementia was $321,780 (2015 dollars). Families incurred 70% of the total cost burden ($225,140), Medicaid accounted for 14% ($44,090), and Medicare accounted for 16% ($52,540). Costs for a person with dementia over a lifetime were $184,500 greater (86% incurred by families) than for someone without dementia. Total annual cost peaked at $89,000, and net cost peaked at $72,400. Reducing functional decline or behavioral and psychological symptoms by 10% resulted in $3,880 and $680 lower lifetime costs than natural disease progression. Dementia substantially increases lifetime costs of care. Long-lasting, effective interventions are needed to support families because they incur the most dementia cost. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.
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ERIC Educational Resources Information Center
Aranda, Maria P.; Villa, Valentine M.; Trejo, Laura; Ramirez, Rosa; Ranney, Martha
2003-01-01
Describes the El Portal Latino Alzheimer's Project--a dementia-specific outreach and services program targeting Latino caregivers in the Los Angeles area. Results of an evaluation of service utilization indicate a reduction in barriers to care and an increase in services utilization. Implications for social work practice are discussed. (Contains…
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The cost of dementia in Denmark: the Odense Study.
Kronborg Andersen, C; Søgaard, J; Hansen, E; Kragh-Sørensen, A; Hastrup, L; Andersen, J; Andersen, K; Lolk, A; Nielsen, H; Kragh-Sørensen, P
1999-01-01
In a population-based study of dementia, the cost of care for 245 demented elderly and 490 controls matched by age and gender was estimated. Dementia of Alzheimer's type was diagnosed according to the NINCDS-ADRDA criteria, and vascular dementia and other types of dementia were diagnosed according to the DSM-IIIR criteria. Severity of dementia was determined by the Clinical Dementia Rating scale. The annual cost of medical care, domestic care, home help, nursing home and special equipment for nondemented patients was DKK 22,000 per person while the cost for very mildly, mildly, moderately and severely demented patients was DKK 49,000, DKK 93,000, DKK 138,000 and DKK 206,000, respectively. Except for very mild dementia the cost did not differ between elderly who suffer from Alzheimer's disease and those with other types of dementia. The net cost of dementia is the difference in cost between those with dementia and the matched controls and amounts on average to DKK 77,000 per person per year. However, priority setting cannot be based on the cost of dementia per se, but only on the cost of a specific dementia intervention compared to its health benefit.
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Museum activities in dementia care: Using visual analog scales to measure subjective wellbeing.
Johnson, Joana; Culverwell, Alison; Hulbert, Sabina; Robertson, Mitch; Camic, Paul M
2017-07-01
Introduction Previous research has shown that people with dementia and caregivers derive wellbeing-related benefits from viewing art in a group, and that facilitated museum object handling is effective in increasing subjective wellbeing for people with a range of health conditions. The present study quantitatively compared the impact of two museum-based activities and a social activity on the subjective wellbeing of people with dementia and their caregivers. Methods A quasi-experimental crossover design was used. People with early to middle stage dementia and caregivers ( N = 66) participated in museum object handling, a refreshment break, and art viewing in small groups. Visual analog scales were used to rate subjective wellbeing pre and post each activity. Results Mixed-design analysis of variances indicated wellbeing significantly increased during the session, irrespective of the order in which the activities were presented. Wellbeing significantly increased from object handling and art viewing for those with dementia and caregivers across pooled orders, but did not in the social activity of a refreshment break. An end-of-intervention questionnaire indicated that experiences of the session were positive. Conclusion Results provide a rationale for considering museum activities as part of a broader psychosocial, relational approach to dementia care and support the use of easy to administer visual analog scales as a quantitative outcome measure. Further partnership working is also supported between museums and healthcare professionals in the development of nonclinical, community-based programs for this population.
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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.
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A controlled trial of Partners in Dementia Care: veteran outcomes after six and twelve months.
Bass, David M; Judge, Katherine S; Snow, A Lynn; Wilson, Nancy L; Morgan, Robert O; Maslow, Katie; Randazzo, Ronda; Moye, Jennifer A; Odenheimer, Germaine L; Archambault, Elizabeth; Elbein, Richard; Pirraglia, Paul; Teasdale, Thomas A; McCarthy, Catherine A; Looman, Wendy J; Kunik, Mark E
2014-01-01
"Partners in Dementia Care" (PDC) tested the effectiveness of a care-coordination program integrating healthcare and community services and supporting veterans with dementia and their caregivers. Delivered via partnerships between Veterans Affairs medical centers and Alzheimer's Association chapters, PDC targeted both patients and caregivers, distinguishing it from many non-pharmacological interventions. Hypotheses posited PDC would improve five veteran self-reported outcomes: 1) unmet need, 2) embarrassment about memory problems, 3) isolation, 4) relationship strain and 5) depression. Greater impact was expected for more impaired veterans. A unique feature was self-reported research data collected from veterans with dementia. Five matched communities were study sites. Two randomly selected sites received PDC for 12 months; comparison sites received usual care. Three structured telephone interviews were completed every 6 months with veterans who could participate. Of 508 consenting veterans, 333 (65.6%) completed baseline interviews. Among those who completed baseline interviews, 263 (79.0%) completed 6-month follow-ups and 194 (58.3%) completed 12-month follow-ups. Regression analyses showed PDC veterans had significantly less adverse outcomes than those receiving usual care, particularly for more impaired veterans after 6 months, including reduced relationship strain (B = -0.09; p = 0.05), depression (B = -0.10; p = 0.03), and unmet need (B = -0.28; p = 0.02; and B = -0.52; p = 0.08). PDC veterans also had less embarrassment about memory problems (B = -0.24; p = 0.08). At 12 months, more impaired veterans had further reductions in unmet need (B = -0.96; p < 0.01) and embarrassment (B = -0.05; p = 0.02). Limitations included use of matched comparison sites rather than within-site randomization and lack of consideration for variation within the PDC group in amounts and types of assistance provided. Partnerships between community and health organizations have the potential to meet the dementia-related needs and improve the psychosocial functioning of persons with dementia. NCT00291161.
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Levy-Storms, Lené; Harris, Lesley M; Chen, Xiao
2016-01-01
The researchers conducted a communication training intervention for certified nursing assistants (CNAs). The intervention aimed at improving CNAs' therapeutic techniques for relating to agitated residents during care. This study focused on an in-depth evaluation of mealtime interactions using videos. Sixteen CNAs and 16 residents living with dementia from one long-term care facility were videotaped during mealtime interactions before and after a therapeutic communication training program. Mixed-effect Poisson regression revealed no effect of the intervention as a whole on residents' refusals, but the intervention did improve CNAs' communication. Additional analyses using specific CNAs' therapeutic communication behaviors indicated a significant negative association with refusals at post-test but not pretest. The findings suggest some communication mechanisms for how the intervention positively influenced residents' refusals.
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Modern Art as Public Care: Alzheimer's and the Aesthetics of Universal Personhood.
Selberg, Scott
2015-12-01
This article is based on ethnographic research of the New York Museum of Modern Art's influential Alzheimer's access program, Meet Me at MoMA. The program belongs to an increasingly popular model of psychosocial treatment that promotes art as potentially therapeutic or beneficial to people experiencing symptoms of dementia as well as to their caregivers. Participant observation of the sessions and a series of interviews with museum staff and educators reveal broader assumptions about the relationship between modern art, dementia, and personhood. These assumptions indicate a museological investment in the capacity and perceived interiority of all participants. Ultimately, the program authorizes a narrative of universal personhood that harmonizes with the museum's longstanding focus on temporal and aesthetic modernism. © 2015 by the American Anthropological Association.
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Medicare Utilization and Expenditures Around Incident Dementia in a Multiethnic Cohort.
Zhu, Carolyn W; Cosentino, Stephanie; Ornstein, Katherine; Gu, Yian; Scarmeas, Nikolaos; Andrews, Howard; Stern, Yaakov
2015-11-01
Few studies have examined patterns of health care utilization and costs during the period around incident dementia. Participants were drawn from the Washington Heights-Inwood Columbia Aging Project, a multiethnic, population-based, prospective study of cognitive aging of Medicare beneficiaries in a geographically defined area of northern Manhattan. Medicare utilization and expenditure were examined in individuals with clinically diagnosed dementia from 2 years before until 2 years after the initial diagnosis. A sample of non-demented individuals who were matched on socio-demographic and clinical characteristics at study enrollment was used as controls. Multivariable regression analysis estimated effects on Medicare utilization and expenditures associated with incident dementia. During the 2 years before incident dementia, rates of inpatient admissions and outpatient visits were similar between dementia patients and non-demented controls, but use of home health and skilled nursing care and durable medical equipment were already higher in dementia patients. Results showed a small but significant excess increase associated with incident dementia in inpatient admissions but not in other areas of care. In the 2 years before incident dementia, total Medicare expenditures were already higher in dementia patients than in non-demented controls. But we found no excess increases in Medicare expenditures associated with incident dementia. Demand for medical care already is increasing and costs are higher at the time of incident dementia. There was a small but significant excess risk of inpatient admission associated with incident dementia. Published by Oxford University Press on behalf of the Gerontological Society of America 2015.
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The influence of relationships on personhood in dementia care: a qualitative, hermeneutic study
2013-01-01
Background In dementia personhood can be understood as increasingly concealed rather than lost. The sense of being a person evolves in relationships with others. The aim of this study was to increase the understanding of the nature and quality of relationships between persons with dementia, family carers and professional caregivers and how these relationships influenced personhood in people with dementia. Methods This Norwegian study had a qualitative hermeneutical design based on ten cases. Each case consisted of a triad: the person with dementia, the family carer and the professional caregiver. Inclusion criteria for persons with dementia were (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2 ie. moderate dementia (4) able to communicate verbally. 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 care centre. Data were analysed in two steps: (1) inductive analysis with an interpretive approach and (2) deductive analysis, applying a theoretical framework for person-centred care. Results Relationships that sustained personhood were close emotional bonds between family carers and persons with dementia and professional relationships between caregivers and persons with dementia. Relationships that diminished personhood were task-centred relationships and reluctant helping relationships between family carers and persons with dementia and unprofessional relationships between caregivers and persons with dementia. Conclusions A broad range of relationships was identified. Understanding the complex nature and quality of these relationships added insight as to how they influenced the provision of care and the personhood of persons with dementia. Personhood was not only bestowed upon them by family carers and professional caregivers; they themselves were active agents who gained a sense of self by what they said and did. PMID:24359589
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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
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2011-01-01
Background The few studies that have attempted to estimate the future cost of caring for people with dementia in Australia are typically based on total prevalence and the cost per patient over the average duration of illness. However, costs associated with dementia care also vary according to the length of the disease, severity of symptoms and type of care provided. This study aimed to determine more accurately the future costs of dementia management by taking these factors into consideration. Methods The current study estimated the prevalence of dementia in Australia (2010-2040). Data from a variety of sources was recalculated to distribute this prevalence according to the location (home/institution), care requirements (informal/formal), and dementia severity. The cost of care was attributed to redistributed prevalences and used in prediction of future costs of dementia. Results Our computer modeling indicates that the ratio between the prevalence of people with mild/moderate/severe dementia will change over the three decades from 2010 to 2040 from 50/30/20 to 44/32/24. Taking into account the severity of symptoms, location of care and cost of care per hour, the current study estimates that the informal cost of care in 2010 is AU$3.2 billion and formal care at AU$5.0 billion per annum. By 2040 informal care is estimated to cost AU$11.6 billion and formal care $AU16.7 billion per annum. Interventions to slow disease progression will result in relative savings of 5% (AU$1.5 billion) per annum and interventions to delay disease onset will result in relative savings of 14% (AU$4 billion) of the cost per annum. With no intervention, the projected combined annual cost of formal and informal care for a person with dementia in 2040 will be around AU$38,000 (in 2010 dollars). An intervention to delay progression by 2 years will see this reduced to AU$35,000. Conclusions These findings highlight the need to account for more than total prevalence when estimating the costs of dementia care. While the absolute values of cost of care estimates are subject to the validity and reliability of currently available data, dynamic systems modeling allows for future trends to be estimated. PMID:21988908
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Renehan, Emma; Goeman, Dianne; Koch, Susan
2017-07-20
In Australia, dementia is a national health priority. With the rising number of people living with dementia and shortage of formal and informal carers predicted in the near future, developing approaches to coordinating services in quality-focused ways is considered an urgent priority. Key worker support models are one approach that have been used to assist people living with dementia and their caring unit coordinate services and navigate service systems; however, there is limited literature outlining comprehensive frameworks for the implementation of community dementia key worker roles in practice. In this paper an optimised key worker framework for people with dementia, their family and caring unit living in the community is developed and presented. A number of processes were undertaken to inform the development of a co-designed optimised key worker framework: an expert working and reference group; a systematic review of the literature; and a qualitative evaluation of 14 dementia key worker models operating in Australia involving 14 interviews with organisation managers, 19 with key workers and 15 with people living with dementia and/or their caring unit. Data from the systematic review and evaluation of dementia key worker models were analysed by the researchers and the expert working and reference group using a constant comparative approach to define the essential components of the optimised framework. The developed framework consisted of four main components: overarching philosophies; organisational context; role definition; and key worker competencies. A number of more clearly defined sub-themes sat under each component. Reflected in the framework is the complexity of the dementia journey and the difficulty in trying to develop a 'one size fits all' approach. This co-designed study led to the development of an evidence based framework which outlines a comprehensive synthesis of components viewed as being essential to the implementation of a dementia key worker model of care in the community. The framework was informed and endorsed by people living with dementia and their caring unit, key workers, managers, Australian industry experts, policy makers and researchers. An evaluation of its effectiveness and relevance for practice within the dementia care space is required.
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[An Occupational Therapy Intervention for People With Dementia].
Ke, Hung-Hsun
2018-02-01
The percentage of individuals with dementia worldwide is increasing with the continued trend toward global trend overall. As options for the medical treatment of dementia remain limited, combined, non-pharmacological interventions are necessary to maintain and slow the degeneration of functional capabilities. Additionally, there is a need to help caregivers develop better patterns of care and methods to reduce the burden of care. Therefore, occupational therapists play an important role in the dementia care team. This article introduces how occupational therapists help dementia patient maintain their functional capabilities and delay degeneration and help caregivers reduce their burden of care. Both activities are based on the concept of occupational therapy, which includes three important components: people, activities, and the environment.
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ERIC Educational Resources Information Center
Makoni, Sinfree; Makoe, Pinky
1999-01-01
Reports on an aspect of a larger project broadly examining the role of language in health care practices. Discusses the effects of dementia on the speech of an aging white Xhosa speaker in the context of a health care institution. Dementia has not been conclusively demonstrated in black Africans. Shows the effects of dementia on the responses…
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Kokkonen, Taru-Maija; Cheston, Richard I L; Dallos, Rudi; Smart, Cordet A
2014-07-01
Past research suggests that dementia care staff are vulnerable to the development of burnout, which has implications for staff well-being and hence the quality of care for people with dementia. Studying personal vulnerability factors in burnout is important as it can guide staff training and support. Attachment theory suggests that adult attachment styles affect caregiving relationships and individuals' responses to stress, providing a framework for understanding caregivers' styles of coping. This cross-sectional survey study examined relationships between staff attachment styles, geriatric nursing self-efficacy, and approaches to dementia in burnout. Seventy-seven members of dementia care staff working on inpatient wards for older people completed self-report questionnaires. Insecure attachment, lower levels of self-efficacy, and more optimistic attitudes in staff were related to higher levels of burnout. Staff training on the role of attachment in dementia care is recommended. Further research is required to explore mediating factors between adult attachment styles and burnout. © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
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Schwarzkopf, Larissa; Holle, Rolf; Schunk, Michaela
2017-01-01
Aims This claims data-based study compares the intensity of diabetes care in community dwellers and nursing home residents with dementia. Methods Delivery of diabetes-related medical examinations (DRMEs) was compared via logistic regression in 1,604 community dwellers and 1,010 nursing home residents with dementia. The intra-individual effect of nursing home transfer was evaluated within mixed models. Results Delivery of DRMEs decreases with increasing care dependency, with more community-living individuals receiving DRMEs. Moreover, DRME provision decreases after nursing home transfer. Conclusion Dementia patients receive fewer DRMEs than recommended, especially in cases of higher care dependency and particularly in nursing homes. This suggests lacking awareness regarding the specific challenges of combined diabetes and dementia care. PMID:28413415
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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.
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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.
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Role expectations in dementia care among family physicians and specialists.
Hum, Susan; Cohen, Carole; Persaud, Malini; Lee, Joyce; Drummond, Neil; Dalziel, William; Pimlott, Nicholas
2014-09-01
The assessment and ongoing management of dementia falls largely on family physicians. This pilot study explored perceived roles and attitudes towards the provision of dementia care from the perspectives of family physicians and specialists. Semi-structured, one-to-one interviews were conducted with six family physicians and six specialists (three geriatric psychiatrists, two geriatricians, and one neurologist) from University of Toronto-affiliated hospitals. Transcripts were subjected to thematic content analysis. Physicians' clinical experience averaged 16 years. Both physician groups acknowledged that family physicians are more confident in diagnosing/treating uncomplicated dementia than a decade ago. They agreed on care management issues that warranted specialist involvement. Driving competency was contentious, and specialists willingly played the "bad cop" to resolve disputes and preserve long-standing therapeutic relationships. While patient/caregiver education and support were deemed essential, most physicians commented that community resources were fragmented and difficult to access. Improving collaboration and communication between physician groups, and clarifying the roles of other multi-disciplinary team members in dementia care were also discussed. Future research could further explore physicians' and other multi-disciplinary members' perceived roles and responsibilities in dementia care, given that different health-care system-wide dementia care strategies and initiatives are being developed and implemented across Ontario.
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Role Expectations in Dementia Care Among Family Physicians and Specialists
Hum, Susan; Cohen, Carole; Persaud, Malini; Lee, Joyce; Drummond, Neil; Dalziel, William; Pimlott, Nicholas
2014-01-01
Background The assessment and ongoing management of dementia falls largely on family physicians. This pilot study explored perceived roles and attitudes towards the provision of dementia care from the perspectives of family physicians and specialists. Methods Semi-structured, one-to-one interviews were conducted with six family physicians and six specialists (three geriatric psychiatrists, two geriatricians, and one neurologist) from University of Toronto-affiliated hospitals. Transcripts were subjected to thematic content analysis. Results Physicians’ clinical experience averaged 16 years. Both physician groups acknowledged that family physicians are more confident in diagnosing/treating uncomplicated dementia than a decade ago. They agreed on care management issues that warranted specialist involvement. Driving competency was contentious, and specialists willingly played the “bad cop” to resolve disputes and preserve long-standing therapeutic relationships. While patient/caregiver education and support were deemed essential, most physicians commented that community resources were fragmented and difficult to access. Improving collaboration and communication between physician groups, and clarifying the roles of other multi-disciplinary team members in dementia care were also discussed. Conclusions Future research could further explore physicians’ and other multi-disciplinary members’ perceived roles and responsibilities in dementia care, given that different health-care system-wide dementia care strategies and initiatives are being developed and implemented across Ontario. PMID:25232368
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Long-term care and dementia services: an impending crisis.
Macdonald, Alastair; Cooper, Brian
2007-01-01
since the transfer of long-stay care to the independent sector, provision of places in care homes in the United Kingdom has varied in response to market trends, and has shown a consistent fall in the past 10 years. People with dementia constitute the largest diagnostic group affected by these changes, and are also likely to be the group that will determine future need. We therefore estimated the number and proportion of older residents in care homes who suffer from dementia relative to all those with dementia in the United Kingdom and projected future levels of demand on the basis of this data. the number of dementia cases in long-stay care was estimated from a random sample survey in south-east England and compared with data on age-specific prevalence. Projections of future demand were based on UK population projections for the next 40 years. over half of all people with dementia in the United Kingdom are in care homes. The number of available long-stay places in care homes has fallen by one-sixth over the past decade. Projection of future demand suggests that well over double the present total places in care homes would be required by 2043 to maintain the present ratio of institutional to community services for dementia. this finding suggests an impending crisis of availability. A more realistic scenario calls for investment in affordable domiciliary care of good quality, but it will also depend on the acceptance of the fact that the main function of long-stay care for old people is now to provide for advanced cases of dementia, with consequent requirement for improvement in staff ratios and training.
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The long reach of Alzheimer's disease: patients, practice, and policy.
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.
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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.
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Pilot Study of Behavioral Treatment in Dementia Care Units.(practice Concepts)(author Abstract)
ERIC Educational Resources Information Center
Lichtenberg, Peter A.; Kemp-Havican, Julie; MacNeill, Susan E.; Johnson, Amanda Schafer
2005-01-01
Purpose: This article reports on the development and use of behavioral treatment as a well-being intervention for individuals with dementia residing at special care units in a nursing home. Design and Methods: The project took place upon the construction and opening of two new homelike units for dementia care in a rural community-care center.…
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2013-01-01
Background Undernutrition is widespread among institutionalised elderly, and people suffering from dementia are at particularly high risk. Many elderly with dementia live in open units or in special care units in nursing homes. It is not known whether special care units have an effect on the nutritional status of the residents. The aim of this study was therefore to examine the nutritional status of residents with dementia in both open units and in special care units. Methods Among Oslo’s 29 municipal nursing homes, 21 participated with 358 residents with dementia or cognitive impairment, of which 46% lived in special care units. Nutritional status was assessed using the Malnutrition Universal Screening Tool and anthropometry. Results We found no differences (p > 0.05) in risk of undernutrition, body mass index, mid-upper arm muscle circumference or triceps skinfold thickness between residents in open units and those in special care units. Residents in special care units were significantly younger and stronger when measured with a hand-grip test. Conclusions We found no difference in nutritional status between nursing home residents with dementia/cognitive impairment in open units versus in special care units. PMID:23496975
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Nyman, Samuel Robert; Innes, Anthea; Heward, Michelle
2017-09-01
This study explored the social care and support needs of people with dementia and visual impairment, and the barriers and facilitators for meeting these needs. Twenty-six semi-structured interviews were conducted: 21 joint and 5 individual interviews with the person with dementia and visual impairment (n=4) or their family/paid carer (n=1). Interviews were analysed thematically. Three themes are presented. (1) Social care needs: having dementia can reduce an individual's ability to cope with their visual impairment, and lead to increased dependency and reduced daily stimulation. (2) Barriers to using technology to meet social care needs: difficulties were reported with learning to use unfamiliar technology and the cost of visual impairment aids, and for some, the presence of dementia made visual impairment aids unusable and vice versa. (3) Familiarity as a facilitator for meeting social care needs: living at home or taking furnishings and ornaments into a new home facilitated independence, and continuity of paid carers/volunteers facilitated the caring relationship between the individual and staff/volunteer. Care workers will better serve older people if they are aware of the social care and support needs that arise from having both dementia and visual impairment.
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Complex decision making in patients with dementia in an internal medicine department.
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.
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[Therapeutic massage on behavioral disturbances of elderly patients with dementia].
Barquilla Ávila, Carolina; Rodríguez-Mansilla, Juan
2015-12-01
To know the efficacy of therapeutic massage on behavioral disturbances of elderly patients with dementia. Literature review. The literature search was done in six scientific databases: PubMed, Cochrane Library Plus, PEDro, Dialnet, Scopus and CSIC, between 1983 and 2013. The search terms were "massage", "dementia", "therapy", "behavior disorders" and "Alzheimer". Of the 496 articles analyzed, 11 scientific articles have met the selection criteria. Inclusion criteria were: clinical trials, published in English or Spanish, which had analyzed the effects of massage therapy on altered behaviors in people with dementia. The variables were massage benefits, type of massage and massage lubricant. Their authors use different massage techniques (effleurage, pétrissage, pressures, frictions and kneading), obtain better conduct disorders (aggression, anxiety, agitation, and resistance to care) of elderly. The therapeutic massage can be a complementary treatment in the rehabilitation program for better behavior disorders. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.
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Fukuda, Risa; Shimizu, Yasuko
2015-01-01
Objective Dementia is a major public health problem. More and more patients with dementia are being admitted to acute care hospitals for treatment of comorbidities. Issues associated with care of patients with dementia in acute care hospitals have not been adequately clarified. This study aimed to explore the challenges nurses face in providing care to patients with dementia in acute care hospitals in Japan. Methods This was a qualitative study using focus group interviews (FGIs). The setting was six acute hospitals with surgical and medical wards in the western region of Japan. Participants were nurses in surgical and internal medicine wards, excluding intensive care units. Nurses with less than 3 years working experience, those without experience in dementia patient care in their currently assigned ward, and head nurses were excluded from participation. FGIs were used to collect data from February to December 2008. Interviews were scheduled for 1–1.5 h. The qualitative synthesis method was used for data analysis. Results In total, 50 nurses with an average experience of 9.8 years participated. Eight focus groups were formed. Issues in administering care to patients with dementia at acute care hospitals were divided into seven groups. Three of these groups, that is, problematic patient behaviors, recurrent problem, and problems affecting many people equally, interact to result in a burdensome cycle. This cycle is exacerbated by lack of nursing experience and lack of organization in hospitals. In coping with this cycle, the nurses develop protection plans for themselves and for the hospital. Conclusions The two main issues experienced by nurses while administering care to patients with dementia in acute care hospitals were as follows: (a) the various problems and difficulties faced by nurses were interactive and caused a burdensome cycle, and (b) nurses do their best to adapt to these conditions despite feeling conflicted. PMID:25716983
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Ashton, Susan Elizabeth; Roe, Brenda; Jack, Barbara; McClelland, Bob
2016-09-01
End of life decisions for people with advanced dementia are reported as often being difficult for families as they attempt to make appropriate and justified decisions. To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia. Qualitative research including a series of single cases (close family relatives). A purposive sample of 12 family caregivers within a specialist dementia unit was interviewed about their experiences of advance care planning between August 2009 and February 2010. Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life. Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia. © The Author(s) 2014.
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Three Methods of Assessing Values for Advance Care Planning
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
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Yoon, Sunmoo
2017-01-01
Background Twitter can address the mental health challenges of dementia care. The aims of this study is to explore the contents and user interactions of tweets mentioning dementia to gain insights for dementia care. Methods We collected 35,260 tweets mentioning Alzheimer’s or dementia on World Alzheimer’s Day, September 21st in 2015. Topic modeling and social network analysis were applied to uncover content and structure of user communication. Results Global users generated keywords related to mental health and care including #psychology and #mental health. There were similarities and differences between the UK and the US in tweet content. The macro-level analysis uncovered substantial public interest on dementia. The meso-level network analysis revealed that top leaders of communities were spiritual organizations and traditional media. Conclusions The application of topic modeling and multi-level network analysis while incorporating visualization techniques can promote a global level understanding regarding public attention, interests, and insights regarding dementia care and mental health. PMID:27803262
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Kwak, Jung; De Larwelle, Jessica A; Valuch, Katharine O'Connell; Kesler, Toni
2016-01-01
Health care proxies make important end-of-life decisions for individuals with dementia. A cross-sectional survey was conducted to examine the role of advance care planning in proxy decision making for 141 individuals with cognitive impairment, Alzheimer's disease, or other types of dementia. Proxies who did not know the preferences of individuals with dementia for life support treatments reported greater understanding of their values. Proxies of individuals with dementia who did not want life support treatments anticipated receiving less support and were more uncertain in decision making. The greater knowledge proxies had about dementia trajectory, family support, and trust of physicians, the more informed, clearer, and less uncertain they were in decision making. In addition to advance care planning, multiple factors influence proxy decision making, which should be considered in developing interventions and future research to support informed decision making for individuals with dementia and their families. Copyright 2016, SLACK Incorporated.
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Invisible realities: Caring for older Moroccan migrants with dementia in Belgium.
Berdai Chaouni, Saloua; De Donder, Liesbeth
2018-01-01
The number of older Moroccan migrants reaching the age of high risk for dementia is increasing in Belgium. Yet no study has been performed to explore how Moroccan families facing dementia experience and manage the condition. The study employed a qualitative design using semi-structured interviews with 12 informal and 13 formal caregivers to answer this research question. Findings indicate that the experience of dementia includes several invisible realities that challenge the informal and formal caregivers: (1) the invisibility of dementia as a condition; (2) the invisible subtleties of the informal care execution; (3) the invisibility and inaccessibility of care services as explanation for these family's non-use of available services; and (4) the overlooking of culture, migration and religion as invisible influencers of the overall dementia experience. A better understanding of these hidden realities of migrant older people with dementia and their caregivers could lead to interventions to provide effective and tailored person-centred care that is sensitive to the individual's life experiences, culture and religious background.
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Curing and Caring: The Work of Primary Care Physicians With Dementia Patients
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
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O'Connor, Claire M; Clemson, Lindy; Brodaty, Henry; Low, Lee-Fay; Jeon, Yun-Hee; Gitlin, Laura N; Piguet, Olivier; Mioshi, Eneida
2017-10-15
To explore the feasibility of implementing the Tailored Activity Program with a cohort of people with frontotemporal dementia and their carers (dyads). The Tailored Activity Program is an occupational therapy based intervention that involves working collaboratively with family carers and prescribes personalized activities for behavioral management in people with dementia. Twenty dyads randomized into the study (Tailored Activity Program: n = 9; Control: n = 11) were assessed at baseline and 4-months. Qualitative analyzes evaluated feasibility and acceptability of the program for the frontotemporal dementia cohort, and quantitative analyzes (linear mixed model analyzes, Spearman's rho correlations) measured the impact of the program on the dyads. The Tailored Activity Program was an acceptable intervention for the frontotemporal dementia dyads. Qualitative analyses identified five themes: "carer perceived benefits", "carer readiness to change", "strategies used by carer to engage person with dementia", "barriers to the Tailored Activity Program uptake/implementation", and "person with dementia engagement". Quantitative outcomes showed an overall reduction of behavioral symptoms (F 18.34 = 8.073, p = 0.011) and maintenance of functional performance in the person with dementia (F 18.03 = 0.375, p = 0.548). This study demonstrates the potential for using an activity-based intervention such as the Tailored Activity Program in frontotemporal dementia. Service providers should recognize that while people with frontotemporal dementia present with challenging issues, tailored therapies may support their function and reduce their behavioral symptoms. Implications for rehabilitation The Tailored Activity Program is an occupational therapy based intervention that involves prescribing personalized activities for behavioral management in dementia. The Tailored Activity Program is an acceptable and feasible intervention approach to address some of the unique behavioral and functional impairments inherent in frontotemporal dementia.
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The full spectrum of ethical issues in dementia care: systematic qualitative review.
Strech, Daniel; Mertz, Marcel; Knüppel, Hannes; Neitzke, Gerald; Schmidhuber, Martina
2013-06-01
Integrating ethical issues in dementia-specific training material, clinical guidelines and national strategy plans requires an unbiased awareness of all the relevant ethical issues. To determine systematically and transparently the full spectrum of ethical issues in clinical dementia care. We conducted a systematic review in Medline (restricted to English and German literature published between 2000 and 2011) and Google books (with no restrictions). We applied qualitative text analysis and normative analysis to categorise the spectrum of ethical issues in clinical dementia care. The literature review retrieved 92 references that together mentioned a spectrum of 56 ethical issues in clinical dementia care. The spectrum was structured into seven major categories that consist of first- and second-order categories for ethical issues. The systematically derived spectrum of ethical issues in clinical dementia care presented in this paper can be used as training material for healthcare professionals, students and the public for raising awareness and understanding of the complexity of ethical issues in dementia care. It can also be used to identify ethical issues that should be addressed in dementia-specific training programmes, national strategy plans and clinical practice guidelines. Further research should evaluate whether this new genre of systematic reviews can be applied to the identification of ethical issues in other cognitive and somatic diseases. Also, the practical challenges in addressing ethical issues in training material, guidelines and policies need to be evaluated.
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Towards a Community-Based Dementia Care Strategy: A Perspective from Quebec.
Godard-Sebillotte, Claire; Vedel, Isabelle; Bergman, Howard
Morton-Chang et al. highlighted in their article the key strategic pillars of a community-based dementia care strategy: put "people first," support informal caregiving and enable "ground up" innovation and change. In our commentary, we draw upon our experience as authors of the Quebec Alzheimer Plan and evaluators of its implementation by the Quebec Ministry of Health and Social Services (MSSS). To us, a sustainable dementia care strategy entails a patient-centred approach, grounded in primary care, caring for persons with dementia at every stage of the disease. Implementation of such a strategy requires an ongoing effort to allow innovation adoption by clinicians and organizations.
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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.
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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
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Housing choices and care home design for people with dementia.
Hadjri, Karim; Rooney, Cliona; Faith, Verity
2015-01-01
This article reviews the current state of housing for people with dementia by exploring housing choices available to this group, and identifying potential issues with design of care homes. Older people who wish to age in place are faced with the challenge of adapting their domestic environment to ensure independence, accessibility, and social connectivity. This is even more challenging for people with dementia who continue to live at home, given the risks of self-harm and getting lost. More imaginative and inclusive forms of collective housing are needed. For people with dementia, a move to a new environment is often a stressful experience that causes shock, withdrawal, and anger. Hence, more research is needed to develop more fitting long-term housing options for people with dementia. This article presents a brief review on housing choices and housing design for people with dementia. Interviews with managers of 22 care homes were conducted to explore housing choices and design issues. Results show that the main housing choices available to people with dementia offer different levels of care. The choice of care homes relates to the atmosphere of a home as some occupants favor a homely or relaxing environment and others prefer dynamic settings. A combination of appropriate level of care, a good atmosphere, and design quality within the care home are elements that lead to a more enabling environment. Design of a successful caring environment also requires appropriate care and a positive therapeutic and domestic-looking environment. © The Author(s) 2015.
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Odzakovic, Elzana; Hydén, Lars-Christer; Festin, Karin; Kullberg, Agneta
2018-02-01
This study aims to examine what types of home care services and housing are granted to people with a dementia diagnosis and how these types are associated with socio-demographic factors (sex, age, marital status, native or foreign born, and regional area). A cross-sectional study of all people diagnosed with dementia in three Swedish counties was conducted from the medical records in 2012. Logistic regression analysis was carried out to investigate associations between home care services and housing and socio-demographic variables. In total, 17,405 people had a dementia diagnosis, and the majority were women, aged 80+ years, and unmarried. Some 72% were living in ordinary housing and 28% lived in special housing. Of those who lived in ordinary housing, 50% did not receive any home care service. Not receiving any type of home care services was less common for older people and was also associated with being married and living in rural municipalities. The most common home care services granted were home help and personal care. Special housing was more common for older people, unmarried persons, and those living in rural municipalities. Most people with a dementia diagnosis were living in ordinary housing, and, surprisingly, half of those did not receive any type of home care service. This knowledge is essential for making the living conditions and needs of people living with dementia more visible and to provide good home care services for people with dementia and their families.
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Quality improvement in neurology: dementia management quality measures.
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.
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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.
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Chen, Ping-Jen; Liang, Fu-Wen; Ho, Chung-Han; Cheng, Shao-Yi; Chen, Yi-Chen; Chen, Yu-Han; Chen, Yueh-Chun
2018-03-01
The association between palliative care and life-sustaining treatments for patients with dementia is unclear in Asian countries. To analyse the use of palliative care and its association with aggressive treatments based on Taiwanese national data. A matched cohort study was conducted. The association between intervention and outcome was evaluated using conditional logistic regression analyses. The source population comprised 239,633 patients with dementia diagnosed between 2002 and 2013. We selected patients who received palliative care between 2009 and 2013 (the treatment cohort; N = 1996) and assembled a comparative cohort ( N = 3992) through 1:2 matching for confounding factors. After 2009, palliative care was provided to 3928 (1.64%) patients of the dementia population. The odds ratio for undergoing life-sustaining treatments in the treatment cohort versus the comparative cohort was <1 for most treatments (e.g. 0.41 for mechanical ventilation (95% confidence interval: 0.35-0.48)). The odds ratio was >1 for some treatments (e.g. 1.73 for tube feeding (95% confidence interval: 1.54-1.95)). Palliative care was more consistently associated with fewer life-sustaining treatments for those with cancer. Palliative care is related to reduced life-sustaining treatments for patients with dementia. However, except in the case of tube feeding, which tended to be provided alongside palliative care regardless of cancer status, having cancer possibly had itself a protective effect against the use of life-sustaining treatments. Modifying the eligibility criteria for palliative care in dementia, improving awareness on the terminal nature of dementia and facilitating advance planning for dementia patients may be priorities for health policies.
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Teipel, Stefan; Óvári, Attila; Kilimann, Ingo; Witt, Gabriele; Doblhammer, Gabriele
2016-01-01
Recent research has revealed an association between hearing impairment and dementia. The objective of this study is to determine the effect of hearing impairment on dementia incidence in a longitudinal study, and whether ear, nose, and throat (ENT) specialist care, care level, institutionalization, or depression mediates or moderates this pathway. The present study used a longitudinal sample of 154,783 persons aged 65 and older from claims data of the largest German health insurer; containing 14,602 incident dementia diagnoses between 2006 and 2010. Dementia and hearing impairment diagnoses were defined according to International Classification of Diseases, Tenth Revision, codes. We used a Kaplan Meier estimator and performed Cox proportional hazard models to explore the effect of hearing impairment on dementia incidence, controlling for ENT specialist care, care level, institutionalization, and depression. Gender, age, and comorbidities were controlled for as potential confounders. Patients with bilateral (HR = 1.43, p<0.001) and side-unspecified (HR = 1.20, p<0.001) hearing impairment had higher risks of dementia incidence than patients without hearing impairment. We found no significant effect for unilateral hearing impairment and other diseases of the ear. The effect of hearing impairment was only partly mediated through ENT specialist utilization. Significant interaction between hearing impairment and specialist care, care level, and institutionalization, respectively, indicated moderating effects. We discuss possible explanations for these effects. This study underlines the importance of the association between hearing impairment and dementia. Preserving hearing ability may maintain social participation and may reduce the burden associated with dementia. The particular impact of hearing aid use should be the subject of further investigations, as it offers potential intervention on the pathway to dementia. PMID:27391486
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Peacock, Shelley C
2013-04-01
The number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.
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["As Good as it Gets at Home" - Reasons for Institutionalisation in Dementia].
Grau, H; Berth, H; Lauterberg, J; Holle, R; Gräßel, E
2016-09-01
What are the reasons for institutionalising community-dwelling persons with dementia? A written survey of family caregivers and general practitioners was undertaken. Within 2 years 47 of 351 people with dementia (13%) were institutionalised. The person with dementia was involved in the decision in only 1/3 of the cases. The 3 most common reasons were: ensuring the best possible care, high expenditure of care-giving time at home, deterioration of the health of the care-receiver. From the ethical point of view the exclusion of the persons with dementia from the decision-making with regard to institutionalisation has to be examined critically. The often given reason of ensuring the best possible care through institutionalisation could be counteracted by the improvement of community-based care. © Georg Thieme Verlag KG Stuttgart · New York.
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The value of life story work for staff, people with dementia and family members.
McKinney, Aidín
2017-05-31
Dementia is a term used to describe a collection of symptoms that include problems with memory, self-care, reasoning and communication. Care interventions that focus on preserving people's dignity and identity are therefore essential. Using Driscoll's reflective model to guide critical thinking, this article reflects on the use of one intervention, namely life story work, to promote person-centred care for people with dementia. It explores the value or effect of life story work for healthcare staff, the person with dementia and family members. It also highlights best practice guidelines that are useful to consider to promote its optimal success as an intervention in dementia care, for example, instigating it early in the dementia journey and embedding it in a supportive culture. It is important to highlight to nursing students the many positive aspects of incorporating life story work into practice.
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ERIC Educational Resources Information Center
Livingston, Lucas; Fiterman Persin, Gerri; Del Signore, Deborah
2016-01-01
This article focuses on the implementation and evaluation of "Art in the Moment," a collaborative program between the Art Institute of Chicago and CJE SeniorLife, a non-profit eldercare organization and service provider for the Chicago area. We joined together to develop and offer "Art in the Moment" as an arts-based…
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Gitlin, Laura N; Piersol, Catherine Verrier; Hodgson, Nancy; Marx, Katherine; Roth, David L; Johnston, Deidre; Samus, Quincy; Pizzi, Laura; Jutkowitz, Eric; Lyketsos, Constantine G
2016-07-01
Among over 5million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS. Copyright © 2016 Elsevier Inc. All rights reserved.
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Beck, Esther-Ruth; McIlfatrick, Sonja; Hasson, Felicity; Leavey, Gerry
2017-05-01
This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.
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A Meta-Ethnography of Paid Dementia Care Workers’ Perspectives on Their Jobs
Cook, Cheryl; Fay, Sherri; Rockwood, Kenneth
2012-01-01
Background While much work has been to evaluate paid workers’ perspectives on the care they provide dementia patients, there is no evidence of any systematic review of this topic. Methods We conducted a meta-ethnography of the topic “paid dementia care workers’ perspectives on their jobs.” Multiple databases were searched for qualitative work that reported on workers’ opinions and perspectives on their jobs in dementia care, including all settings and types of jobs. A final group of 34 articles were included, and their themes and constructs synthesized using a meta-ethnographic approach developed by Noblit and Hare. Results Five overarching themes uncovered: approach to care, education and training, emotional impact of the work, organizational factors, and relationships on the job. We also describe how the themes are related to each other. Conclusions Interplay of the theme areas shows the importance of dementia- specific education and training in terms of the approach to care and emotional impact of the work. Closing the gap between policy and practice is critical, but achieving this will require that attention be paid to dementia-specific education for all workers, including care leaders. PMID:23259026
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Williams, Kristine; Blyler, Diane; Vidoni, Eric D; Shaw, Clarissa; Wurth, JoEllen; Seabold, Denise; Perkhounkova, Yelena; Van Sciver, Angela
2018-06-01
The number of persons with dementia (PWD) in the United States is expected to reach 16 million by 2050. Due to the behavioral and psychological symptoms of dementia, caregivers face challenging in-home care situations that lead to a range of negative health outcomes such as anxiety and depression for the caregivers and nursing home placement for PWD. Supporting Family Caregivers with Technology for Dementia Home Care (FamTechCare) is a multisite randomized controlled trial evaluating the effects of a telehealth intervention on caregiver well-being and PWD behavioral symptoms. The FamTechCare intervention provides individualized dementia-care strategies to in-home caregivers based on video recordings that the caregiver creates of challenging care situations. A team of dementia care experts review videos submitted by caregivers and provide interventions to improve care weekly for the experimental group. Caregivers in the control group receive feedback for improving care based on a weekly phone call with the interventionist and receive feedback on their videos at the end of the 3-month study. Using linear mixed modeling, we will compare experimental and control group outcomes (PWD behavioral symptoms and caregiver burden) after 1 and 3 months. An exploratory descriptive design will identify a typology of interventions for telehealth support for in-home dementia caregivers. Finally, the cost for FamTechCare will be determined and examined in relation to hypothesized effects on PWD behavioral symptoms, placement rates, and caregiver burden. This research will provide the foundation for future research for telehealth interventions with this population, especially for families in rural or remote locations. © 2018 Wiley Periodicals, Inc.
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Asian Pacific Islander dementia care network: a model of care for underserved communities.
Kally, Zina; Cherry, Debra L; Howland, Susan; Villarruel, Monica
2014-01-01
This study presents the results of the work of the Asian Pacific Islander Dementia Care Network (APIDCN)--a collaborative model of care created to develop community capacity to deliver dementia capable services, build community awareness about Alzheimer's disease and other dementias, and offer direct services to caregivers in the API community in Los Angeles. Through trainings, mentoring, and outreach campaigns, the APIDCN expanded the availability of culturally competent services in the API community. The knowledge that was embedded within partner organizations and in the community at large assures sustainability of the services after the project ended.
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McSweeney, Kate; Jeffreys, Aimee; Griffith, Joanne; Plakiotis, Chris; Kharsas, Renee; O'Connor, Daniel W
2012-11-01
This cluster randomized controlled trial sought to determine whether multidisciplinary specialist mental health consultation was more effective than care as usual in treating the depression of aged care residents with dementia. Three hundred and eighty nine aged care residents were screened for dementia and major depression. Forty four were ultimately included in the intervention sample, selected from 20 aged care facilities located in Melbourne, Australia. Facilities were randomly allocated to an intervention condition involving the provision of multidisciplinary specialist consultation regarding the best-practice management of depression in dementia, or to a care as usual condition. Consultations involved individually tailored medical and psychosocial recommendations provided to care staff and general practitioners. All residents participated in a comprehensive pre-intervention diagnostic assessment, including the administration of the Cornell Scale for Depression in Dementia. This assessment was repeated approximately 15 weeks post-intervention by a rater blind to study condition. Multidisciplinary specialist mental health consultation was significantly more effective than care as usual in treating the clinical depression of aged care residents with dementia (p < 0.05, partial η(2) = 0.16). At follow-up, the mean Cornell Scale for Depression in Dementia score for the intervention group was 9.47, compared with 14.23 for the control group. In addition, 77% of the intervention group no longer met criteria for major depression. The results of this study suggest that the psychosocial and medical management of depressed aged care residents can be improved by increasing access to specialist mental health consultation. Copyright © 2012 John Wiley & Sons, Ltd.
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Potential Role of Neuroimaging Markers for Early Diagnosis of Dementia in Primary Care.
Teipel, Stefan; Kilimann, Ingo; Thyrian, Jochen R; Kloppel, Stefan; Hoffmann, Wolfgang
2018-01-01
The use of imaging markers for the diagnosis of predementia and early dementia stages of Alzheimer's disease (AD) has widely been explored in research settings and specialized care. The use of these markers in primary care has yet to be established. Summarize current evidence for the usefulness of imaging markers for AD in primary compared to specialized care settings. Selective overview of the literature, and pilot data on the use of MRI-based hippocampus and basal forebrain volumetry for the discrimination of AD dementia and mild cognitive impairment (MCI) cases from healthy controls in 58 cases from a primary care cohort and 58 matched cases from a memory clinic's sample. Molecular imaging marker of amyloid pathology, and volumetric markers of regional and whole brain atrophy support the diagnosis of AD dementia and MCI due to AD, and contribute to confidence in the differential diagnosis of AD and non-AD related dementias in specialized care. Limited evidence from the literature and our primary care cohort suggests that the diagnostic accuracy of volumetric imaging markers may be similar in the dementia stage of AD, but may be inferior for cases with MCI in primary compared with specialized care. Evidence is still widely lacking on the use of imaging markers for early and differential diagnosis of AD dementia, and detection of prodromal AD in primary care. Further progress to fill this gap will depend on the availability of international multimodal data from well-defined primary care cohorts. Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.org.
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Predictors of activity involvement in dementia care homes: a cross-sectional study.
Smit, Dieneke; de Lange, Jacomine; Willemse, Bernadette; Pot, Anne Margriet
2017-08-04
Despite the finding that involvement in activities is one of the most important needs of residents with dementia living in care homes, care facilities struggle to fulfill this need. Over the years, various factors are suggested which may contribute to or disable activity provision in dementia care homes. These include limited financial resources, task oriented staff and disease-related characteristics of residents. This study aims to further clarify which of these factors predict higher activity involvement. Data were derived from the second measurement (2011) of the Living Arrangements for people with Dementia study. One thousand two hundred eighteen people residing in 139 dementia care homes were involved. Forty predictors of higher involvement were studied. Multilevel backward regression analyses were performed. The most important predictors of higher involvement were: absence of agitation, less ADL dependency, and a higher cognitive status of the residents, higher staff educational level, lower experienced job demands by care staff and a smaller number of residents living in the dementia care wards of a facility. More social supervisor support as perceived by staff was found to predict less activity involvement. To increase the activity involvement of care home residents with dementia it seems vital to: 1) reduce staff's experienced job demands; 2) elevate their overall educational level; 3) train staff to provide suitable activities, taking account of the behavior and preserved capabilities of residents; and 4) foster transition towards small-scale care. In order to achieve these aims, care organizations might need to evaluate the use of their financial means.
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Reviewing the definition of crisis in dementia care
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
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Reviewing the definition of crisis in dementia care.
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.
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Dal Bello-Haas, Vanina P M; Cammer, Allison; Morgan, Debra; Stewart, Norma; Kosteniuk, Julie
2014-01-01
Rural and remote settings pose particular healthcare and service delivery challenges. Providing appropriate care and support for individuals with dementia and their families living in these communities is especially difficult, and can only be accomplished when the needs of care providers and the context and complexity of care provision are understood. This paper describes formal and informal caregivers' perceptions of the challenges and needs in providing care and support for individuals with dementia living in rural and remote areas of Saskatchewan, Canada. A mixed-methods exploratory approach was used to examine caregivers' needs. This research was a component of a broader process evaluation designed to inform the initial and ongoing development of a community-based participatory research program in rural dementia care, which included the development of the Rural and Remote Memory Clinic (RRMC). Four approaches were used for data collection and analyses: (1) thematic analysis of consultation meetings with rural healthcare providers: documented discussions from consultation meetings that occurred in 2003-2004 with rural physicians and healthcare providers regarding plans for a new RRMC were analysed thematically; (2) telephone and mail questionnaires: consultation meeting participants completed a subsequent telephone or mail questionnaire (2003-2004) that was analysed descriptively; (3) thematic analysis of referral letters to the Rural and Remote Memory Clinic: physician referral letters over a five-year period (2003-2008) were analysed descriptively and thematically; and (4) examination of family caregiver satisfaction: four specific baseline questionnaire questions completed by family caregivers (2007-2010) were analysed descriptively and thematically. Both physician and non-physician healthcare providers identified increased facilities and care programs as needs. Physicians were much more likely than other providers to report available support services for patients and families as adequate. Non-physician providers identified improved services, better coordination of services, travel and travel burden related needs, and staff training and education needs as priorities. Physician needs, as determined via referral letters, included confirmation of diagnosis or treatment, request for further management suggestions, patient or family request, and consultation regarding difficult cases. One-third of informal caregivers expressed not being satisfied with the care received prior to the Rural and Remote Memory Clinic assessment visit, and identified lack of diagnosis and long wait times for services as key issues. Delivering services and providing care and support for individuals with dementia living in rural and remote communities are especially challenging. The need for increased extent of services was a commonality among formal and informal caregivers. Primary care physicians may seek confirmation of their diagnosis or may need assistance when dealing with difficult aspects of care, as identified by referral letters. Differences between the needs identified via referral letters and questionnaire responses of physicians may be a reflection of the rural or remote context of care provision. Informal caregiver needs were more aligned with non-physician healthcare providers with respect to the need for improved access to additional healthcare professionals and services. The findings have implications for regional policy development that addresses human and other resource shortages.
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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.
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Translating research knowledge in dementia care organisations.
Alyami, Hussain; Peri, Kathy; Vanderpyl, Jane; Cheung, Gary
2016-06-01
To evaluate dementia care organisations' capacity to acquire, assess, adapt and apply dementia research. We used the Canadian Health Services Research Foundation's survey, 'Is research working for you?' by inviting the members of the New Zealand National Dementia Cooperative to participate in the online survey. A total of 146 (32%) members responded and indicated that, although the workforce had the skills to engage in research and implement evidence into practice, there was limited organisational support in terms of the time, resources and access to external support. We propose a number of strategies to improve knowledge translation in dementia care. © The Royal Australian and New Zealand College of Psychiatrists 2015.
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Zimmerman, Sheryl; Sloane, Philip D; Williams, Christianna S; Dobbs, Debra; Ellajosyula, Ratnavalli; Braaten, Alyssa; Rupnow, Marcia F T; Kaufer, Daniel I
2007-09-01
To estimate the sensitivity, specificity, and reliability of the Minimum Data Set Cognition Scale (MDS-COGS) in screening for undetected dementia when completed by direct care staff in residential care/assisted living (RC/AL) facilities and secondarily to determine the prevalence of dementia in the sample. A cross-sectional study in which staff were trained to complete the MDS-COGS. Research interviewers and a neuropsychologist obtained information on each participant. Two neurologists reviewed the data and examined the participant, rendering a probable diagnosis of dementia/non-dementia diagnosis. MDS-COGS results were compared with the neurologists' determination. Fourteen RC/AL facilities in North Carolina. Data were collected from 50 staff on 166 residents without a diagnosis of dementia. In addition to the MDS-COGS, measures included a comprehensive neuropsychological battery. Depression and other neuropsychiatric symptoms were also assessed. Neurologists determined that 38% of participants had probable dementia. An MDS-COGS cutpoint of 2 was highly specific (0.97) but not very sensitive (0.49) for dementia. Test-retest and interrater agreement for a negative screen were high (88% and 93%, respectively). The MDS-COGS is a simple, brief screen that RC/AL staff can complete. It will identify with high specificity a subset of residents with undetected dementia, allowing rapid identification of those likely to need dementia care. Caution needs to be exercised in light of its low sensitivity, because some with milder dementia will not be detected. Further work is needed to determine whether staff can and will use the MDS-COGS as a trigger for more-thorough assessment and to guide care and improve outcomes.
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Daly, Louise; McCarron, Mary; Higgins, Agnes; McCallion, Philip
2013-02-01
This paper presents a theory explaining the processes used by informal carers of people with dementia to mange alterations to their, and people with dementias' relationships with and places within their social worlds. Informal carers provide the majority of care to people with dementia. A great deal of international informal dementia care research is available, much of which elucidates the content, impacts and consequences of the informal caring role and the coping mechanisms that carers use. However, the socially situated experiences and processes integral to informal caring in dementia have not yet been robustly accounted for. A classic grounded theory approach was used as it is designed for research enquiries that aim to generate theory illustrating social patterns of action used to address an identified problem. Thirty interviews were conducted with 31 participants between 2006-2008. The theory was conceptualised from the data using the concurrent methods of theoretical sampling, constant comparative analysis, memo writing and theoretical sensitivity. Informal carers' main concern was identified as 'Living on the fringes', which was stimulated by dementia-related stigma and living a different life. The theory of 'Sustaining Place' explains the social pattern of actions employed by informal carers to manage this problem on behalf of themselves and the person with dementia. The theory of 'Sustaining Place' identifies an imperative for nurses, other formal carers and society to engage in actions to support and enable social connectedness, social inclusion and citizenship for informal carers and people with dementia. 'Sustaining Place' facilitates enhanced understanding of the complex and socially situated nature of informal dementia care through its portrayal of informal carers as social agents and can be used to guide nurses to better support those who live with dementia. © 2012 Blackwell Publishing Ltd.
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ERIC Educational Resources Information Center
Williams, Christine L.; Molinari, Victor; Bond, Jennifer; Smith, Michael; Hyer, Kathryn; Malphurs, Julie
2006-01-01
There is increasing recognition of the severe consequences of depression in long-term care residents with dementia. Most health care providers are unprepared to recognize and to manage the complexity of depression in dementia. Targeted educational initiatives in nursing homes are needed to address this growing problem. This paper describes the…
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König, Hans-Helmut; Leicht, Hanna; Brettschneider, Christian; Bachmann, Cadja; Bickel, Horst; Fuchs, Angela; Jessen, Frank; Köhler, Mirjam; Luppa, Melanie; Mösch, Edelgard; Pentzek, Michael; Werle, Jochen; Weyerer, Siegfried; Wiese, Birgitt; Scherer, Martin; Maier, Wolfgang; Riedel-Heller, Steffi G
2014-02-01
To compare the costs of care for community-dwelling dementia patients with the costs of care for dementia patients living in nursing homes from the societal perspective. Cross-sectional bottom-up cost of illness study nested within the multicenter German AgeCoDe-cohort. Community and nursing homes. One hundred twenty-eight community-dwelling dementia patients and 48 dementia patients living in nursing homes. None. Utilization and costs of medical care and long term care, including formal and informal social and nursing care based on proxy interviews. Informal care was valued using the replacement cost method. Unadjusted mean annual total costs including informal care were €29,930 ($43,997) for community-dwelling patients and €33,482 ($49,218) for patients living in nursing homes. However, multiple regression analysis controlling for age, sex, deficits in basic and instrumental activities of daily living and comorbidity showed that living in the community significantly increased total costs by €11,344 ($16,676; P < .01) compared with living in a nursing home, mainly due to higher costs of informal care (+€20,585; +$30,260; P < .001). From the societal perspective care for dementia patients living in the community tends to cost more than care in nursing homes when functional impairment is controlled for. Copyright © 2014 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.
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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.
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General practitioners perceptions on advance care planning for patients living with dementia.
Brazil, Kevin; Carter, Gillian; Galway, Karen; Watson, Max; van der Steen, Jenny T
2015-04-23
Advance care planning (ACP) facilitates communication and understanding of preferences, nevertheless the use of ACPs in primary care is low. The uncertain course of dementia and the inability to communicate with the patient living with dementia are significant challenges for GPs to initiate discussions on goals of care. A cross-sectional survey, using a purposive, cluster sample of GPs across Northern Ireland with registered dementia patients was used. GPs at selected practices received the survey instrument and up to four mail contacts was implemented. One hundred and thirty-three GPs (40.6%) participated in the survey, representing 60.9% of surveyed practices. While most respondents regarded dementia as a terminal disease (96.2%) only 37.6% felt that palliative care applied equally from the time of diagnosis to severe dementia. While most respondents thought that early discussions would facilitate decision-making during advanced dementia (61%), respondents were divided on whether ACP should be initiated at the time of diagnoses. While most respondents felt that GPs should take the initiative to introduce and encourage ACP, most survey participants acknowledged the need for improved knowledge to involve families in caring for patients with dementia at the end of life and that a standard format for ACP documentation was needed. Optimal timing of ACP discussions should be determined by the readiness of the patient and family carer to face end of life. ACP discussions can be enhanced by educational strategies directed towards the patient and family carer that enable shared decision-making with their GP when considering options in future care.
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A systematic review of what factors attract and retain nurses in aged and dementia care.
Chenoweth, Lynn; Jeon, Yun-Hee; Merlyn, Teri; Brodaty, Henry
2010-01-01
To present evidence-based factors for the recruitment and retention of licensed nurses caring for older people and persons with dementia. The international nurse shortage crisis is intensified in the aged and dementia care sector. Strategies to address this crisis rely on qualitative, quasi-experimental, anecdotal and unsubstantiated literature. Systematic literature review. Search terms 'nurse''nurses''nursing''clinical supervision''staff''staffing''staff mix''staff levels''recruitment''retention''aged care''gerontology''gerontological''dementia care''residential''nursing home,' were used in all possible combinations and applied in a wide range of relevant academic databases, with secondary hand searches of selected bibliographies. Two hundred and twenty-six papers were retrieved and scanned, with 105 chosen for closer examination that were relevant to recruitment and retention strategies for dementia and aged care nursing. Twenty-five of the papers chosen for review were rated at level 2++ to 3, according to the guidelines of the National Institute for Health and Clinical Excellence (The NICE Guidelines Manual, National Institute for Health and Clinical Excellence, London). The 25 critically reviewed papers are organised as promising strategies for (1) nurse recruitment and (2) nurse retention. The intrinsic rewards of the caring role attract nurses to dementia and aged care. Essential strategies linking recruitment with retention are: careful selection of student nurse clinical placements and their ongoing supervision and education, training for skills, leadership and teamwork for new and existing nurses, increased staffing levels, pay parity across different health settings and family friendly policies. A family-friendly, learning environment that values and nurtures its nursing staff, in the same way as nurses are expected to value and care for their patients and residents, is critical in ensuring their retention in dementia and aged care.
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Prince, Martin; Brodaty, Henry; Uwakwe, Richard; Acosta, Daisy; Ferri, Cleusa P; Guerra, Mariella; Huang, Yueqin; Jacob, KS; Llibre Rodriguez, Juan J; Salas, Aquiles; Sosa, Ana Luisa; Williams, Joseph D; Jotheeswaran, AT; Liu, Zhaorui
2012-01-01
Objectives In a multi-site population-based study in several middle-income countries, we aimed to investigate relative contributions of care arrangements and characteristics of carers and care recipients to strain among carers of people with dementia. Based on previous research, hypotheses focused on carer sex, care inputs, behavioural and psychological symptoms (BPSD) and socioeconomic status, together with potential buffering effects of informal support and employing paid carers. Methods In population-based catchment area surveys in 11 sites in Latin America, India and China, we analysed data collected from people with dementia and care needs, and their carers. Carer strain was assessed with the Zarit Burden Interview. Results With 673 care recipient/carer dyads interviewed (99% of those eligible), mean Zarit Burden Interview scores ranged between 17.1 and 27.9 by site. Women carers reported more strain than men. The most substantial correlates of carer strain were primary stressors BPSD, dementia severity, needs for care and time spent caring. Socioeconomic status was not associated with carer strain. Those cutting back on work experienced higher strain. There was tentative evidence for a protective effect of having additional informal or paid support. Conclusions Our findings underline the global impact of caring for a person with dementia and support the need for scaling up carer support, education and training. That giving up work to care was prevalent and associated with substantial increased strain emphasizes the economic impact of caring on the household. Carer benefits, disability benefits for people with dementia and respite care should all be considered. Copyright © 2012 John Wiley & Sons, Ltd. PMID:22460403
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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.
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[Experiencing dementia: evaluation of Into D'mentia].
Hattink, Bart J J; Meiland, Franka J M; Campman, Carlijn A M; Rietsema, Jan; Sitskoorn, Margriet; Dröes, Rose-Marie
2015-10-01
Most persons with dementia in the Netherlands live at home, where they are cared for by informal carers such as family members or friends, who offer this care unpaid. Their care-task poses a high burden on these informal carers, increasing the risk of health problems and social isolation. Many informal carers indicate they want more information on the behaviour of those they care for. To develop and evaluate Into D'mentia, a simulation set in a living kitchen in which visitors experience a day in the life of someone with dementia. During this 'day', modern techniques such as sensors and projections, simulate the limitations of having dementia. This intervention is evaluated on usefulness and user friendliness, and on its effect on empathy, attitudes towards dementia, coping, carer burden, person-centered care capabilities and care satisfaction. Nine informal carers and 23 care professionals took part in the research into the Into D'mentia simulation. Before and after their visit, they filled in several questionnaires, with, among others, their opinion on the usefulness and user friendliness of this experience. Participants found Into D'mentia a highly useful and user friendly development. They indicated that the simulation offered good insight in the life of someone with dementia, and that they could offer better care thanks to this experience. Participants also indicated that they often thought back on their experiences in the simulation, in order to better understand the behaviour of people with dementia. Into D'mentia offers a unique, accessible way to experience the limitations dementia has on daily life. Users indicate that it is a useful and user friendly innovation. Into D'mentia appears to be a suitable method to support informal and professional caregivers.
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ERIC Educational Resources Information Center
McCallion, Philip; Hogan, Mary; Santos, Flavia H.; McCarron, Mary; Service, Kathryn; Stemp, Sandy; Keller, Seth; Fortea, Juan; Bishop, Kathleen; Watchman, Karen; Janicki, Matthew P.
2017-01-01
Background: Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. Methods: A preliminary report summarizing available literature and making…
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Missed and Delayed Diagnosis of Dementia in Primary Care: Prevalence and Contributing Factors
Bradford, Andrea; Kunik, Mark E.; Schulz, Paul; Williams, Susan P.; Singh, Hardeep
2009-01-01
Dementia is a growing public health problem for which early detection may be beneficial. Currently, the diagnosis of dementia in primary care is dependent mostly on clinical suspicion based on patient symptomsor caregivers’ concerns and is prone to be missed or delayed. We conducted a systematic review of the literature to ascertain the prevalence and contributing factors for missed and delayed dementia diagnoses in primary care. Prevalence of missed and delayed diagnosis was estimated by abstracting quantitative data from studies of diagnostic sensitivity among primary care providers. Possible predictors and contributory factors were determined from the text of quantitative and qualitative studies of patient-, caregiver-, provider-, and system-related barriers. Overall estimates of diagnostic sensitivity varied among studies and appeared to be in part a function of dementia severity, degree of patient impairment, dementia subtype, and frequency of patient-provider contact. Major contributory factors included problems with attitudes and patient-provider communication, educational deficits, and system resource constraints. The true prevalence of missed and delayed diagnoses of dementia is unknown but appears to be high. Until the case for dementia screening becomes more compelling, efforts to promote timely detection should focus on removing barriers to diagnosis. PMID:19568149
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Caregiver- and Patient-Directed Interventions for Dementia
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
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[Application of music therapy for managing agitated behavior in older people with dementia].
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.
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Zur, Briana M; Rudman, Debbie Laliberte; Johnson, Andrew M; Roy, Eric A; Wells, Jennie L
2013-04-01
Within the area of dementia care, occupational therapists are asked to predict occupational competence in everyday living and often do so by assessing cognitive competence. Considering the cognitive changes that occur with dementia over time, the construct of cognitive competence is a key consideration. Still, a gap exists in the literature examining the relationship between cognitive competence and occupational competence. This study developed a consensus among participating Canadian occupational therapists regarding the components of cognitive competence they considered essential to predict occupational competence in people with dementia. A three-round Delphi study was completed with English- and French-speaking occupational therapists (n = 127; 116; 125) experienced in dementia care. Ten cognitive components were identified as essential to predict occupational competence in individuals with dementia. The 10 identified components provide direction for assessment practices and education in dementia care and for development of measurement tools.
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The influence of cultural background in intercultural dementia care: exemplified by Sami patients.
Hanssen, Ingird
2013-06-01
To gain knowledge about how the original culture may influence communication and interaction with institutionalised patients with dementia and of what particular cultural aspects may come to the fore, exemplified by Sami patients. Qualitative narrative interviews with 15 interviewees, family members of Sami patients with dementia and nursing staff experienced with dementia care were conducted. Hermeneutic, thematic analysis was used. Although the way dementia influence mental functions, language, etc. is universal, behaviours, reactions and responses may be coloured by the patient's background culture. Knowledge of language, cultural codes and the patient's former life are primary keys to understanding. Rhythm of life, spirituality, singing and tangible aspects of traditional culture like clothes and food constitute important aspects of culture-appropriate care. © 2012 Nordic College of Caring Science.
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Sadak, Tatiana; Wright, Jacob; Borson, Soo
2018-05-01
The National Alzheimer's Plan calls for improving health care for people living with dementia and supporting their caregivers as capable health care partners. Clinically useful measurement tools are needed to monitor caregivers' knowledge and skills for managing patients' often complex health care needs as well as their own self-care. We created and validated a comprehensive, caregiver-centered measure, Managing Your Loved One's Health (MYLOH), based on a core set of health care management domains endorsed by both providers and caregivers. In this article, we describe its development and preliminary cultural tailoring. MYLOH is a questionnaire containing 29 items, grouped into six domains, which requires <20 min to complete. MYLOH can be used to guide conversations between clinicians and caregivers around health care management of people with dementia, as the basis for targeted health care coaching, and as an outcome measure in comprehensive dementia care management interventions.
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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.
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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
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Wawrziczny, Emilie; Berna, Guillaume; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal
2017-06-20
To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programs. Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. We compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. The results suggest that programs should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.
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[Telemedicine and dementia: a need for the 21st century].
Vilalta-Franch, J; Garre-Olmo, J; López-Pousa, S; Coll-De Tuero, G; Monserrat-Vila, S
The ongoing process of information and communication technologies in health services implies a change in the conception, organization and management of these services. Telemedicine is a working method that allows health professionals to explore and/or treat a patient from an off-site location. In this review we provide a historical background on telemedicine, the evolution of its bibliometric impact, and its application for people with dementia. Telemedicine's applications have been developed in order to provide greater availability and easier access to healthcare to underserved people. The bibliometric study of telemedicine literature shows an increase in the number of bibliographic references related to telemedicine since 1995. During the last few years in Spain the research and development of telemedicine programs have increased significantly and at present there are telemedicine programs in all regions of the country. Although some of the needs of the patients with dementia may be unsuitable for communication and information technologies, their application could offer an added value to health services. This technology does not attempt to replace face-to-face medical consultations but rather to prevent some difficulties this kind of patients can present and improve their quality of life. Dementia could be an appropriate field in order to implement some telemedicine programs that may improve patient medical care, and reduce medical and management expenses for social and healthcare services.
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Living better with dementia: strengths-based social work practice and dementia care.
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.
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Bökberg, Christina; Ahlström, Gerd; Karlsson, Staffan
2017-09-04
The progression of dementia disease implies increasing needs for both informal and formal care and services but also risk of institutionalisation. To better adjust care and services in the phase preceding institutionalisation it is important to find out whether utilisation of formal and informal care and services is determined by increased needs and by who meets the needs. The aim was to compare persons with dementia (65+) with different levels of cognitive impairment, regarding utilisation of formal and informal care and service at home. The participants consisted of 177 persons with dementia ≥65 years old and at risk of nursing home admission, divided into groups according to their cognitive function. Structured interviews were conducted based on questionnaires about type and amount of formal and informal care utilised, as well as questions regarding cognitive impairment, dependency in activities of daily living (ADLs) and neuropsychiatric symptoms. To analyse the data, descriptive and comparative statistics were used. The findings revealed that the group with severe dementia used significantly more help with ADLs and supervision in terms of time (number of hours and days) provided by the informal caregiver, compared with the group with moderate dementia. Utilisation of formal care and services was highest in the group with the most severe cognitive impairments (Standardized Mini-Mental State Examination score of <9). The group with severe dementia were more dependent in ADLs and had more neuropsychiatric symptoms (hallucinations and motor disturbances). They were younger and more often cohabitated with the informal caregiver, compared with the group with moderate dementia. This study shows that in the phase preceding institutionalisation the ADL and supervision needs due to progression of dementia appear to tend to be met first and foremost by the informal caregivers. © 2017 Nordic College of Caring Science.
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Primary Care Collaborative Memory Clinics: Building Capacity for Optimized Dementia Care.
Lee, Linda; Hillier, Loretta M; Molnar, Frank; Borrie, Michael J
2017-01-01
Increasingly, primary care collaborative memory clinics (PCCMCs) are being established to build capacity for person-centred dementia care. This paper reflects on the significance of PCCMCs within the system of care for older adults, supported with data from ongoing evaluation studies. Results highlight timelier access to assessment with a high proportion of patients being managed in primary care within a person-centred approach to care. Enhancing primary care capacity for dementia care with interprofessional and collaborative care will strengthen the system's ability to respond to increasing demands for service and mitigate the growth of wait times to access geriatric specialist assessment.
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Between practice, policy and politics: Music therapy and the Dementia Strategy, 2009.
Spiro, Neta; Farrant, Camilla L; Pavlicevic, Mercédès
2017-04-01
Does current music therapy practice address the goals encapsulated in the UK Department of Health document, Living well with dementia: a national dementia strategy (the Dementia Strategy) published in 2009? A survey elicited the views of clients, family members, music therapists, care home staff and care home managers, about this question by focusing on the relationship between music therapy and the 17 objectives outlined in the Dementia Strategy. The results showed that the objectives that are related to direct activity of the music therapists (such as care and understanding of the condition) were seen as most fulfilled by music therapy, while those regarding practicalities (such as living within the community) were seen as least fulfilled. Although the responses from the four groups of participants were similar, differences for some questions suggest that people's direct experience of music therapy influences their views. This study suggests that many aspects of the Dementia Strategy are already seen as being achieved. The findings suggest that developments of both music therapy practices and government strategies on dementia care may benefit from being mutually informed.
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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.
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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.
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Home is where the future is: The BrightFocus Foundation consensus panel on dementia care.
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.
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A controlled trial of Partners in Dementia Care: veteran outcomes after six and twelve months
2014-01-01
Introduction “Partners in Dementia Care” (PDC) tested the effectiveness of a care-coordination program integrating healthcare and community services and supporting veterans with dementia and their caregivers. Delivered via partnerships between Veterans Affairs medical centers and Alzheimer’s Association chapters, PDC targeted both patients and caregivers, distinguishing it from many non-pharmacological interventions. Hypotheses posited PDC would improve five veteran self-reported outcomes: 1) unmet need, 2) embarrassment about memory problems, 3) isolation, 4) relationship strain and 5) depression. Greater impact was expected for more impaired veterans. A unique feature was self-reported research data collected from veterans with dementia. Methods and Findings Five matched communities were study sites. Two randomly selected sites received PDC for 12 months; comparison sites received usual care. Three structured telephone interviews were completed every 6 months with veterans who could participate. Results Of 508 consenting veterans, 333 (65.6%) completed baseline interviews. Among those who completed baseline interviews, 263 (79.0%) completed 6-month follow-ups and 194 (58.3%) completed 12-month follow-ups. Regression analyses showed PDC veterans had significantly less adverse outcomes than those receiving usual care, particularly for more impaired veterans after 6 months, including reduced relationship strain (B = −0.09; p = 0.05), depression (B = −0.10; p = 0.03), and unmet need (B = −0.28; p = 0.02; and B = −0.52; p = 0.08). PDC veterans also had less embarrassment about memory problems (B = −0.24; p = 0.08). At 12 months, more impaired veterans had further reductions in unmet need (B = −0.96; p < 0.01) and embarrassment (B = −0.05; p = 0.02). Limitations included use of matched comparison sites rather than within-site randomization and lack of consideration for variation within the PDC group in amounts and types of assistance provided. Conclusions Partnerships between community and health organizations have the potential to meet the dementia-related needs and improve the psychosocial functioning of persons with dementia. Trial Registry NCT00291161 PMID:24764496
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ERIC Educational Resources Information Center
Allen, Michael; Ferrier, Suzanne; Sargeant, Joan; Loney, Elaine; Bethune, Graeme; Murphy, Gerard
2005-01-01
Caring for patients with dementia is complex and demanding. Since family physicians (FPs) provide much of this care, we examined their practices, learning needs, and barriers to care concerning Alzheimer's disease and other dementias. We surveyed 392 (approximately 50%) Nova Scotia FPs and conducted focus groups and interviews with: FPs; staff of…
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Therapeutic touch and dementia care: an ongoing journey.
Doherty, Donna; Wright, Stephen; Aveyard, Barry; Sykes, Meg
2006-12-01
Touch is considered a core aspect of care provision and therapeutic relationships. Therapeutic touch allows nurses to facilitate healing and forge therapeutic relationships through touch or non-touch and maintain channels of communication often lost in dementia as the disease progresses. This article reports the findings of a research project to examine the effectiveness of therapeutic touch in dementia care.
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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.
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A phenomenological study of living with a partner affected with dementia.
Meyer, Jennie; Mc Cullough, Joanne; Berggren, Ingela
2016-01-01
Caring for people affected by dementia is a collective effort that involves public health, primary care, and informal care. The third mainly comprises the efforts of spouses. This study aimed to describe spouses' experiences of living with a partner affected with dementia. The study has a descriptive phenomenological approach based on a reflective life-world perspective. Seven in-depth interviews were conducted with spouses of persons affected with dementia. The interviews were audiotaped and analysed using the procedures described by Giorgi (2009) . The essence of living with a partner affected by dementia formed a comprehensive theme: from togetherness to loneliness, which along with three descriptive categories-changes in their partner's behaviour, changes in everyday life, and a changed future-describes the phenomenon. The theme 'From togetherness to loneliness' reflects the spouses' descriptions of their life-world. Daily life changed gradually in line with their partners' personality, and their role became that of a care provider rather than a spouse. Information and knowledge about dementia should be provided at an early stage. Health care has a major responsibility to meet their needs, thus ensuring that all parties are satisfied.
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Wang, Yao; Xiao, Lily Dongxia; Ullah, Shahid; He, Guo-Ping; De Bellis, Anita
2017-02-01
The lack of dementia education programmes for health professionals in primary care is one of the major factors contributing to the unmet demand for dementia care services. To determine the effectiveness of a nurse-led dementia education and knowledge translation programme for health professionals in primary care; participants' satisfaction with the programme; and to understand participants' perceptions of and experiences in the programme. A cluster randomized controlled trial was used as the main methodology to evaluate health professionals' knowledge, attitudes and care approach. Focus groups were used at the end of the project to understand health professionals' perceptions of and experiences in the programme. Fourteen community health service centres in a province in China participated in the study. Seven centres were randomly assigned to the intervention or control group respectively and 85 health professionals in each group completed the programme. A train-the-trainer model was used to implement a dementia education and knowledge translation programme. Outcome variables were measured at baseline, on the completion of the programme and at 3-month follow-up. A mixed effect linear regression model was applied to compare the significant differences of outcome measures over time between the two groups. Focus groups were guided by four semi-structured questions and analysed using content analysis. Findings revealed significant effects of the education and knowledge translation programme on participants' knowledge, attitudes and a person-centred care approach. Focus groups confirmed that the programme had a positive impact on dementia care practice. A dementia education and knowledge translation programme for health professionals in primary care has positive effects on their knowledge, attitudes, care approach and care practice. Copyright © 2016 Elsevier Ltd. All rights reserved.
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Finnema, Evelyn; Dröes, Rose-Marie; Ettema, Teake; Ooms, Marcel; Adèr, Herman; Ribbe, Miel; van Tilburg, Willem
2005-04-01
To examine the effect of integrated emotion-oriented care on nursing home residents with dementia and nursing assistants. A multi-site randomized clinical trial with matched groups, and measurements at baseline and after seven months. Sixteen psychogeriatric wards in fourteen nursing homes in the Netherlands. One hundred and forty-six elderly residents with the diagnosis dementia of the Alzheimer (DAT) type, mixed DAT and vascular dementia, and dementia syndrome (NAO) and 99 nursing assistants. Integrated emotion-oriented care and usual care. MESUREMENTS: Demented elderly: Behaviour and mood related to adaptation to the illness and the institutionalization. Nursing assistants: General health as measured by feelings of stress, stress reactions, feeling of competence and illness. Positive effects in favour of the integrated emotion-oriented care were found in mild to moderately demented residents on two adaptive tasks: maintaining an emotional balance (less anxiety) and preserving a positive self-image (less dissatisfaction). In the trained group of nursing assistants fewer stress reactions were found only in those who perceived improvement in their emotion-oriented care skills after training. Emotion-oriented care is more effective with regard to the emotional adaptation in nursing homes of persons with a mild to moderate dementia. For the severely demented elderly we did not find this surplus value. This outcome is of clinical importance for elderly persons with dementia who are cared for in nursing homes. With respect to the nursing assistants it is concluded that emotion-oriented care has a positive influence on stress reactions in some of them. Copyright 2005 John Wiley & Sons, Ltd.
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Work situation of registered nurses in municipal elderly care in Sweden: a questionnaire survey.
Josefsson, Karin; Sonde, Lars; Winblad, Bengt; Robins Wahlin, Tarja-Brita
2007-01-01
Organizational changes have occurred in municipal elderly care in Sweden during the past decades. The 'Adel' reform transferred responsibility for the care of older persons from the county councils to the municipalities. Furthermore, the specialisation in dementia care divided elderly care into two groups: dementia and general care. This change has had a significant impact on the work situation of registered nurses (RNs). The main focus was to describe RNs' work situation and their characteristics in municipal elderly care. Another aim was to compare RNs working solely in dementia care with those working in general care of older persons with diverse diagnoses. A non-experimental, descriptive design with a survey research approach was used. Sixty special housing units with underlying units including those offering daytime activities in a large city in the middle of Sweden. The number of participating RNs was a total of 213, with a response rate of 62.3%. Of the 213 RNs, 95 (44.6%) worked in dementia care, and 118 (55.4%) in general care. A questionnaire survey. The results indicated high levels of time pressure in both groups. Greater knowledge and greater emotional and conflicting demands were found in dementia care. The majority perceived a greater opportunity to plan and perform daily work tasks than to influence the work situation in a wider context. Support at work was perceived as generally high from management and fellow workers and higher in dementia care. It is important to decrease RNs' time pressure and increase their influence on decisions made at work.
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Factors influencing the degree of eating ability among people with dementia.
Lee, Kyoung Min; Song, Jun-Ah
2015-06-01
To explore the degree of eating ability in people with dementia and identify what factors affect their eating ability. Appropriate food consumption is important to human life. Although eating difficulties are common among people with dementia, little is known about what factors might influence their eating ability. Descriptive, cross-sectional study. A total of 149 people with dementia residing in nursing facilities in Seoul or the Gyeonggi area of Korea were evaluated using the Korean Mini-Mental State Examination, Korean Activities of Daily Living Scale and Eating Behaviour Scale. Data were analysed using descriptive statistics, one-way analysis of variance, Pearson correlation coefficient and multiple regression analysis. The participants showed a moderate level of dependency with respect to eating ability and were most dependent on the use of utensils. There were significant differences in eating ability according to general characteristics such as duration of residence, duration of illness, degree of visual impairment, eating place, and diet type. The eating ability of the participants was significantly correlated with cognitive function and physical function. Cognitive function, physical function, duration of illness, eating place (living room or dining room), and diet type (soft or liquid) significantly predicted eating ability in people with dementia. The findings of this study suggest that it is necessary to thoroughly assess the eating ability of people with dementia and to develop appropriate training programs to maintain or improve their remaining eating ability. The creation of a pleasurable physical and social environment for eating might also be helpful. These findings would be able to serve a useful basis in the development of materials for nursing intervention programs for people with dementia during mealtimes by improving the techniques and care qualities of nursing caregivers. © 2015 John Wiley & Sons Ltd.
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UK quality statements on end of life care in dementia: a systematic review of research evidence.
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.
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van Wezel, Nienke; Francke, Anneke L; Kayan-Acun, Emine; Ljm Devillé, Walter; van Grondelle, Nies J; Blom, Marco M
2016-01-01
The prevalence of dementia is increasing among non-western immigrants. It is known that family care is provided relatively often among immigrant groups. Until now, however, relatively little was known about how relatives of people with dementia in the immigrant communities perceive family care. This study therefore focuses on describing the perspectives of female Turkish, Moroccan and Surinamese Creole family carers in the Netherlands about providing family care to a close relative with dementia. Forty-one individual interviews and six focus group interviews (n=28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia. A qualitative analysis of the interviews has been carried out, supported by the software MaxQda. Related to their cultural and religious backgrounds, female family carers with Turkish, Moroccan or Surinamese Creole origins see family care as a task that they should carry out with respect and love. They feel that family care is superior to professional care and that it is principally a task for women. If men do have a role in family care, then it generally covers non-physical aspects. Despite the fact that the family carers interviewed listed aspects that make caring for a close relative with dementia difficult, they do say that they get a great deal of satisfaction from providing this care. In Turkish and Moroccan families in particular this type of care leads to more recognition and appreciation of the daughter or daughter-in-law who is giving it. Family carers of Turkish, Moroccan or Surinamese Creole origin derive a great deal of satisfaction from giving family care to a relative with dementia. This fulfilment largely outweighs the burden of care. Professional support or information for these family carers can be improved by also focusing on the positive aspects of providing family care instead of an exclusive focus on reducing the burden. © The Author(s) 2014.
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Ethical and cultural striving: Lived experiences of minority nurses in dementia care.
Egede-Nissen, Veslemøy; Sellevold, Gerd Sylvi; Jakobsen, Rita; Sørlie, Venke
2017-09-01
Nursing workforce in Western European health institutions has become more diverse because of immigration and recruitment from Asian, African, and East-European countries. Minority healthcare providers may experience communication problems in interaction with patients and coworkers, and they are likely to experience conflict or uncertainty when confronted with different cultural traditions and values. Persons with dementia are a vulnerable group, and the consequences of their illness challenge the ability to understand and express oneself verbally. The large number of minority healthcare providers in nursing homes underlines the importance to obtain better knowledge about this group's experiences with the care challenges in dementia care units. Can you tell about any challenges in the experiences in the encounter with persons suffering from dementia? Participants and research context: Five minority healthcare providers in a nursing home, in a dementia unit. All guidelines for research ethic were followed. Ethical consideration: The participants were informed that participation was voluntary, and they were guarantied anonymity. We used a qualitative method, conducting individual interviews, using a narrative approach. In the analysis, we applied a phenomenological-hermeneutical method, developed for researching life experiences. One theme and four subthemes: striving to understand the quality of care for persons with dementia. The subthemes: sensitivity to understand the patients' verbal and nonverbal expressions. To understand gratefulness, understand the patient as an adult and autonomous person, and understand the patient as a patient in a nursing home. Challenges comprise both ethical and cultural striving to understand persons with dementia. To care for persons with dementia in an unfamiliar context may be understood as a striving for acting ethically, when at the same time striving to adapt and acculturate to new cultural norms, in order to practice good dementia care.
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Wood, Julia Helen; Alushi, Ledia; Hammond, John A
2017-02-01
We designed an educational programme for multiple disciplines to improve healthcare students' preparedness to work with people with dementia. It consisted of class-based sessions followed by a volunteer experience interacting with persons with dementia in care homes. This paper discusses the value and impact of this innovative experience.
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Primary Care-Based Memory Clinics: Expanding Capacity for Dementia Care.
Lee, Linda; Hillier, Loretta M; Heckman, George; Gagnon, Micheline; Borrie, Michael J; Stolee, Paul; Harvey, David
2014-09-01
The implementation in Ontario of 15 primary-care-based interprofessional memory clinics represented a unique model of team-based case management aimed at increasing capacity for dementia care at the primary-care level. Each clinic tracked referrals; in a subset of clinics, charts were audited by geriatricians, clinic members were interviewed, and patients, caregivers, and referring physicians completed satisfaction surveys. Across all clinics, 582 patients were assessed, and 8.9 per cent were referred to a specialist. Patients and caregivers were very satisfied with the care received, as were referring family physicians, who reported increased capacity to manage dementia. Geriatricians' chart audits revealed a high level of agreement with diagnosis and management. This study demonstrated acceptability, feasibility, and preliminary effectiveness of the primary-care memory clinic model. Led by specially trained family physicians, it provided timely access to high-quality collaborative dementia care, impacting health service utilization by more-efficient use of scarce geriatric specialist resources.
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[Conceptualizations on care for persons with dementia in nursing homes].
Rodríguez-Martín, Beatriz; Martínez-Andrés, María; Notario-Pacheco, Blanca; Martínez-Vizcaíno, Vicente
2016-03-01
Despite the importance of family perceptions when analyzing care for the elderly in nursing homes, little is said about this aspect. This study aims to identify preferences and areas for improvement in care for persons with dementia, as perceived by families. A qualitative study was performed, based on Grounded Theory, combining two data collection techniques (participant observation and in-depth interviews) in a theoretical sample of institutionalized persons with dementia. The ideal model of care for persons with dementia, as perceived by participants, was based on specialized and individualized care and family participation in the care provided. Areas for improvement included aspects pertaining to specialized training in geriatrics, human relations, and the culture of institutional work. Faced with the current trend towards technification of care, families are now demanding personalized, small-scale care in which they form an active part of the team.
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Assembling the salon: Learning from alternative forms of body work in dementia care.
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.
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Garden, Gill; Green, Suzanne; Pieniak, Susan; Gladman, John
2016-04-01
People with dementia have worse outcomes associated with hospital admission, are more likely to have interventions and are less likely to be offered palliative care than people without dementia. Advance care planning for care home residents has been shown to reduce hospital admissions without increasing mortality. Studies have shown that staff confidence in managing delirium, a common reason for admission, improves with training. A service combining education for care home staff and advance care planning for care home residents with dementia was introduced to care homes in Boston, UK. There were improvements in staff confidence in recognition, prevention, management and knowledge of factors associated with delirium and dysphagia. 92% of carers rated the service >9/10. Admissions fell by 37% from baseline in the first year and 55% in the second and third years. All but one resident died in the preferred place of care. © 2016 Royal College of Physicians.
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Baillie, Lesley; Thomas, Nicola
2018-01-01
Person-centred care is internationally recognised as best practice for the care of people with dementia. Personal information documents for people with dementia are proposed as a way to support person-centred care in healthcare settings. However, there is little research about how they are used in practice. The aim of this study was to analyse healthcare staff 's perceptions and experiences of using personal information documents, mainly Alzheimer's Society's 'This is me', for people with dementia in healthcare settings. The method comprised a secondary thematic analysis of data from a qualitative study, of how a dementia awareness initiative affected care for people with dementia in one healthcare organisation. The data were collected through 12 focus groups (n = 58 participants) and 1 individual interview, conducted with a range of healthcare staff, both clinical and non-clinical. There are four themes presented: understanding the rationale for personal information documents; completing personal information documents; location for personal information documents and transfer between settings; impact of personal information documents in practice. The findings illuminated how healthcare staff use personal information documents in practice in ways that support person-centred care. Practical issues about the use of personal information documents were revealed and these may affect the optimal use of the documents in practice. The study indicated the need to complete personal information documents at an early stage following diagnosis of dementia, and the importance of embedding their use across care settings, to support communication and integrated care.
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Disruption, control and coping: responses of and to the person with dementia in hospital.
Porock, Davina; Clissett, Philip; Harwood, Rowan H; Gladman, John R F
2015-01-01
This qualitative study aimed to gain insight into the experience of hospitalisation from the perspectives of the older person with dementia, their family care-giver and other patients sharing the ward (co-patients). Non-participant observation of care on 11 acute hospital wards was supplemented by 39 semi-structured interviews with 35 family care-givers and four co-patients following discharge. Constant comparative analysis produced the core problem facing all those involved: disruption from normal routine meaning that the experience of hospitalisation was disrupted by the presence and behaviour of the person with dementia. Disruption adversely affected the person with dementia, triggering constructive, disengaged, distressed and neutral behaviours. Using Kitwood's model of person-centred care, these behaviours were interpreted as attempts by the person with dementia at gaining a sense of control over the unfamiliar environment and experience. Family care-givers' lives and experiences both inside and outside the hospital were disrupted by the hospitalisation. They too attempted to gain a sense of control over the experience and to give a sense of control to the patient, co-patients and staff. Co-patients experienced disruption from sharing space with the person with dementia and were left feeling vulnerable and sometimes afraid. They too attempted to gain a sense of control over their situation and give some control by helping the person with dementia, the family care-giver and the staff.
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Supportive and palliative care for patients with chronic mental illness including dementia.
Lloyd-Williams, Mari; Abba, Katharine; Crowther, Jacqueline
2014-09-01
People with preexisting mental illness are known to have difficulty accessing healthcare services including palliative care and people with dementia have similar issues accessing palliative care. The review addressed the time period from January 2013 to March 2014. There were few articles addressing issues for palliative and supportive care for patients with preexisting mental health issues. The main factor that would improve care is interdisciplinary working between mental healthcare teams and palliative care teams. In contrast, there were many published articles on the palliative and supportive care needs for people with dementia. These articles included consensus statements, models of care; studies of why models of care, for example Advanced Care Planning were not being implemented; and carer reports of care in the last year of life. Urgent research is required as to how support for people with preexisting mental illness who require palliative care can be improved--excellent liaison between mental health and palliative care teams is essential. There is much research on palliative care needs for people with dementia but an apparent lack of innovative approaches to care including care of people within their family home.
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The Arts as a Medium for Care and Self-Care in Dementia: Arguments and Evidence.
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.
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Care homes and the Mental Capacity Act 2005: Changes in understanding and practice over time.
Manthorpe, Jill; Samsi, Kritika
2016-07-01
The Mental Capacity Act 2005 provides the legal framework in England and Wales for the making of decisions in respect of people who have never had or have lost decision-making capacity. As part of a 5-year research program investigating the implementation and adoption of the Mental Capacity Act in dementia practice, we interviewed staff working in different care homes at two time points (32 staff at Time 1 in 2008 and 27 staff at Time 2 in 2012) in South East England. At baseline Time 1, daily practice seemed to resonate with Mental Capacity Act principles of respecting decisions and trying to act in a person's best interests. This paper reports Time 2 findings. We found that few care home staff interviewed specifically reported finding the Mental Capacity Act helpful in crystallizing the legal basis of their work. Most continued to offer illustrations of day-to-day practice in which they paid attention to individual choices, took account of the wishes of residents' families, and tried to act in residents' best interests but referred major decisions to their seniors. This study highlights the potential of referring to specific day-to-day practice in care homes when offering training or scrutinizing practice in dementia care more generally so that the work is set in its legal as well as moral framework. Care home staff in this study reported that advanced planning and pre-specifying preferences were more common among new care home residents, especially those with dementia, indicating that greater understanding of these is required by staff. © The Author(s) 2014.
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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
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Broda, Anja; Bieber, Anja; Meyer, Gabriele; Hopper, Louise; Joyce, Rachael; Irving, Kate; Zanetti, Orazio; Portolani, Elisa; Kerpershoek, Liselot; Verhey, Frans; Vugt, Marjolein de; Wolfs, Claire; Eriksen, Siren; Røsvik, Janne; Marques, Maria J; Gonçalves-Pereira, Manuel; Sjölund, Britt-Marie; Woods, Bob; Jelley, Hannah; Orrell, Martin; Stephan, Astrid
2017-08-03
As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers. Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4-7 experts (total N = 38). The interview guide addressed the topics "Complexity and Continuity of Care", "Formal Services", and "Public Awareness". Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries. The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness. Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.
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Thyrian, Jochen René; Eichler, Tilly; Michalowsky, Bernhard; Wucherer, Diana; Reimann, Melanie; Hertel, Johannes; Richter, Steffen; Dreier, Adina; Hoffmann, Wolfgang
2016-03-30
Efficient help and care for people with dementia (PWD) is dependent on knowledge about PWD in primary care. This analysis comprehensively describes community-dwelling PWD in primary care with respect to various dementia care specific variables. The analyses are based on baseline data of the ongoing general practitioner-based, randomized, controlled intervention trial DelpHi-MV (Dementia: life- and person-centered help). 6,838 patients were screened for dementia in 136 GP practices; 17.1% were screened positive, 54.4% of those agreed to participate and data could be assessed in n = 516 subjects. We assessed age, sex, living situation, cognitive status, functional status, level of impairment, comorbidities, formal diagnosis of dementia, depression, neuropsychiatric symptoms, quality of life, utilization of medical support, and pharmacological therapy. Concerning clinical-, dementia-, and health-related variables, the sample under examination was on average mildly cognitively and functionally impaired (MMSE, m = 22.2; BADL, m = 3.7). A level of care was assigned in 38.0%. Depression was identified in 15.4% and other frequent comorbidities were high blood pressure (83.3%), coronary heart diseases (37.1%), cerebrovascular diseases (22.3%), among others. In 48.6%, neuropsychiatric symptoms were present in a clinically relevant severity. Pharmacological treatment with antidementia medication was received by 25.8% and antidepressant medication by 14.0%. Utilization of services was generally low. The comprehensive description of people screened positive for dementia in primary care reveals a complex and unique population of patients. They are considerably underdiagnosed and in their majority mildly to moderately affected. More in-depth analyses are needed to study relations, associations and interactions between different variables.
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Lethin, Connie; Leino-Kilpi, Helena; Roe, Brenda; Soto, Maria Martin; Saks, Kai; Stephan, Astrid; Zwakhalen, Sandra; Zabalegui, Adelaida; Karlsson, Staffan
2016-01-29
In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease. A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole. There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree. Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making.
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Dementia and serious coexisting medical conditions: a double whammy.
Maslow, Katie
2004-09-01
Research-based information about the prevalence of other serious medical conditions in people with dementia has become available only recently, and the true prevalence is not known, primarily because many people with dementia do not have a diagnosis. The existing information is sufficient, however, to show that these other conditions are common in people with dementia. It is also clear that coexisting medical conditions increase the use and cost of health care services for people with dementia, and conversely, dementia increases the use and cost of health care services for people with other serious medical conditions. Nurses and other healthcare professionals should expect to see these relationships in their elderly patients. They should know how to recognize possible dementia and assess, or obtain an assessment of, the patient's cognitive status. They should expect the worsening of cognitive and related symptoms in acutely ill people with dementia and try to eliminate factors that cause this worsening, to the extent possible, while assuring the family that the symptoms are likely to improve once the acute phase of illness or treatment is over. Families, nurses, and other health care professionals are challenged by the complex issues involved in caring for a person with both dementia and other serious medical conditions. Greater attention to these issues by informed and thoughtful clinicians will improve outcomes for the people and their family and professional caregivers.
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Klie, T; Schmidt, R
2002-06-01
The demographic and epidemiological scenarios, concerning persons with dementia, are in tension between the legal general conditions of care, on the one hand, and the conceptual alignment, on the other hand; this tension is hardly resolved by the momentary activities in health and care policy. Even on the level of assessment, there are scarcely any instruments to picture the specific needs of patients with dementia. Concepts of supply for persons with dementia are widely still divided by the differentiation between stationary and outpatient. Intelligent mixtures and paradigmatic reorientation towards normalization or split responsibility have not yet enfolded their embossing effects in practice. The care of persons with dementia is in many respects still bound in pre-technical constellations: this applies to the conceptual bias inside an institution or service of old people's care, to legal and economical general conditions and instruments of control and in many ways also to the technical discourse. The relevancy of attendance of people with dementia today and in the future justifies talking about "dementia policy". Options for dementia policy lay in a consequent adaptation of the theory of the New Welfare Mix, which was developed by the political sciences, including discussion about normalization in the area of help for disabled people and in the reformulation of competence between the means of fringe benefits and employees' benefits in joint responsibility.
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Interventions for confusion and dementia. 5: Changing cultures.
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.
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The nutritional care of people living with dementia at home: A scoping review.
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.
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Ericson-Lidman, Eva; Larsson, Lise-Lotte Franklin; Norberg, Astrid
2014-06-01
Caring for people with dementia and working in dementia care is described as having both rewarding and unpleasant aspects and has been studied to a minor extent. This study aims to explore care providers' narrated experiences of caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD. Nine care providers were interviewed about their experiences, the interviews were recorded, transcribed and analysed using thematic analysis. The analysis revealed that participants were struggling to perform person-centred care, which meant trying to see the person behind the disease, dealing with troublesome situations in the daily care, a two-edged interaction with relatives, feelings of shortcomings and troubled conscience, and the need for improvements in dementia care. The analysis also revealed an ambiguous work situation, which meant a challenging value base, the differently judged work environment, feelings of job satisfaction and the need for a functional leadership and management. The results illuminate participants' positive as well as negative experiences and have identified areas requiring improvements. It seems of great importance to strive for a supportive and attendant leadership, a leadership which aims to empower care providers in their difficult work. Using conscience as a driving force together in the work group may benefit care providers' health. © 2013 Nordic College of Caring Science.
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The Utilization of Robotic Pets in Dementia Care.
Petersen, Sandra; Houston, Susan; Qin, Huanying; Tague, Corey; Studley, Jill
2017-01-01
Behavioral problems may affect individuals with dementia, increasing the cost and burden of care. Pet therapy has been known to be emotionally beneficial for many years. Robotic pets have been shown to have similar positive effects without the negative aspects of traditional pets. Robotic pet therapy offers an alternative to traditional pet therapy. The study rigorously assesses the effectiveness of the PARO robotic pet, an FDA approved biofeedback device, in treating dementia-related symptoms. A randomized block design with repeated measurements guided the study. Before and after measures included reliable, valid tools such as: RAID, CSDD, GDS, pulse rate, pulse oximetry, and GSR. Participants interacted with the PARO robotic pet, and the control group received standard activity programs. Five urban secure dementia units comprised the setting. 61 patients, with 77% females, average 83.4 years in age, were randomized into control and treatment groups. Compared to the control group, RAID, CSDD, GSR, and pulse oximetry were increased in the treatment group, while pulse rate, pain medication, and psychoactive medication use were decreased. The changes in GSR, pulse oximetry, and pulse rate over time were plotted for both groups. The difference between groups was consistent throughout the 12-week study for pulse oximetry and pulse rate, while GSR had several weeks when changes were similar between groups. Treatment with the PARO robot decreased stress and anxiety in the treatment group and resulted in reductions in the use of psychoactive medications and pain medications in elderly clients with dementia.
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The Utilization of Robotic Pets in Dementia Care
Petersen, Sandra; Houston, Susan; Qin, Huanying; Tague, Corey; Studley, Jill
2016-01-01
Background: Behavioral problems may affect individuals with dementia, increasing the cost and burden of care. Pet therapy has been known to be emotionally beneficial for many years. Robotic pets have been shown to have similar positive effects without the negative aspects of traditional pets. Robotic pet therapy offers an alternative to traditional pet therapy. Objective: The study rigorously assesses the effectiveness of the PARO robotic pet, an FDA approved biofeedback device, in treating dementia-related symptoms. Methods: A randomized block design with repeated measurements guided the study. Before and after measures included reliable, valid tools such as: RAID, CSDD, GDS, pulse rate, pulse oximetry, and GSR. Participants interacted with the PARO robotic pet, and the control group received standard activity programs. Five urban secure dementia units comprised the setting. Results: 61 patients, with 77% females, average 83.4 years in age, were randomized into control and treatment groups. Compared to the control group, RAID, CSDD, GSR, and pulse oximetry were increased in the treatment group, while pulse rate, pain medication, and psychoactive medication use were decreased. The changes in GSR, pulse oximetry, and pulse rate over time were plotted for both groups. The difference between groups was consistent throughout the 12-week study for pulse oximetry and pulse rate, while GSR had several weeks when changes were similar between groups. Conclusions: Treatment with the PARO robot decreased stress and anxiety in the treatment group and resulted in reductions in the use of psychoactive medications and pain medications in elderly clients with dementia. PMID:27716673
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Psychological Treatments for Depression and Anxiety in Dementia and Mild Cognitive Impairment.
Whitehead, Lisa
2016-10-01
The Mission of the Cochrane Nursing Care Field (CNCF) is to improve health outcomes through increasing the use of the Cochrane Library and supporting Cochrane's role by providing an evidence base for nurses and related healthcare professionals involved in delivering, leading, or researching nursing care. The CNCF produces "Cochrane Corner" columns (summaries of recent nursing-care-relevant Cochrane Reviews) that are regularly published in collaborating nursing-care-related journals. Information on the processes this Field has developed can be accessed at: http://cncf.cochrane.org/evidence-transfer-program-review-summaries.
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Teipel, Stefan J; Keller, Felix; Thyrian, Jochen R; Strohmaier, Urs; Altiner, Attila; Hoffmann, Wolfgang; Kilimann, Ingo
2017-01-01
Once a patient or a knowledgeable informant has noticed decline in memory or other cognitive functions, initiation of early dementia assessment is recommended. Hippocampus and cholinergic basal forebrain (BF) volumetry supports the detection of prodromal and early stages of Alzheimer's disease (AD) dementia in highly selected patient populations. To compare effect size and diagnostic accuracy of hippocampus and BF volumetry between patients recruited in highly specialized versus primary care and to assess the effect of white matter lesions as a proxy for cerebrovascular comorbidity on diagnostic accuracy. We determined hippocampus and BF volumes and white matter lesion load from MRI scans of 71 participants included in a primary care intervention trial (clinicaltrials.gov identifier: NCT01401582) and matched 71 participants stemming from a memory clinic. Samples included healthy controls and people with mild cognitive impairment (MCI), AD dementia, mixed dementia, and non-AD related dementias. Volumetric measures reached similar effect sizes and cross-validated levels of accuracy in the primary care and the memory clinic samples for the discrimination of AD and mixed dementia cases from healthy controls. In the primary care MCI cases, volumetric measures reached only random guessing levels of accuracy. White matter lesions had only a modest effect on effect size and diagnostic accuracy. Hippocampus and BF volumetry may usefully be employed for the identification of AD and mixed dementia, but the detection of MCI does not benefit from the use of these volumetric markers in a primary care setting.
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Concepts of care for people with dementia.
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.
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Baal, Pieter H M van; Hoogendoorn, Martine; Fischer, Alastair
2016-04-01
Preventing dementia has been proposed to increase population health as well as reduce the demand for health and social care. Our aim was to evaluate whether preventing dementia by promoting physical activity (PA) a) improves population health or b) reduces expenditure for both health and social care if one takes into account the additional demand in health and social care caused by increased life expectancy. A simulation model was developed that models the relation between PA, dementia, mortality, and the use of health care and social care in England. With this model, scenarios were evaluated in which different assumptions were made about the increase in PA level in (part of) the population. Lifetime spending on health and social care related to dementia was highest for the physically inactive (£28,100/£28,900 for 40-year-old males/females), but spending on other diseases was highest for those that meet PA recommendations (£55,200/£43,300 for 40-year-old males/females) due to their longer life expectancies. If the English population aged 40-65 were to increase their PA by one level, life expectancy would increase by 0.23years and health and social care expenditures would decrease by £400 per person. Preventing dementia by increasing PA increases life expectancy and can result in decreased spending overall on health and social care, even after additional spending during life years gained has been taken into account. If prevention is targeted at the physically inactive, savings in dementia-related costs outweigh the additional spending in life years gained. Copyright © 2016 Elsevier Inc. All rights reserved.
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Cloutier, Denise S; Penning, Margaret J
2017-02-01
Janus, the two-faced, Roman god of beginnings and transitions, is used as a metaphor to explore our personal narratives and our quantitative research on the experiences of older women with dementia in long-term care (LTC). Two research questions are addressed: (a) How do our quantitative data map onto our mothers' experiences? (b) What lessons do our mothers' experiences offer for the care of older women with dementia? Informed by a life-course perspective, we triangulate administrative data on 3,717 women with dementia receiving LTC in British Columbia, Canada, with personal narratives-the stories of our mothers who made the transition from home care into residential (nursing home) care. Our quantitative data reveal that the home care to residential care transition is the most common LTC trajectory for women with dementia who are most likely to be widowed and living alone in suburban areas. On entry into residential care, they exhibit greater frailty in terms of activities of daily living, cognition, aggression, and incontinence. Our personal narrative data on our mothers reveals that the relatively straightforward pathways through LTC for women with dementia, are often considerably more complex in a real-world context. Attention is drawn to the public and private services, hospitalization patterns, and substantial communication gaps experienced by our moms and families. A life-course perspective, and qualitative and quantitative data facilitate understanding the care journeys-health and service trajectories of older women with dementia. © The Author 2016. 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.
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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.
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Mkhonto, Flora; Hanssen, Ingrid
2018-01-01
To explore and describe the link between culture and dementia care with the focus on the influence of the belief in dementia as witchcraft and people with dementia as witches. In South Africa, especially in townships and rural areas, dementia is often perceived as connected to witchcraft rather than to disease. Persons labelled as witches-mostly older women-may be bullied, ostracised, beaten, stoned, burned, even killed. One strand of findings from a larger international study is presented with in-depth qualitative interviews of one close family member and seven nurses caring for patients with severe dementia in nursing homes in Tshwane in South Africa. A hermeneutic analytic approach was used. Two main themes are found, namely "Belief in witchcraft causing fear of persons with dementia" and "Need of knowledge and education." Fear of and violence towards people with dementia are based on the belief that they are witches. Some of the nurses had also held this belief until they started working with patients with dementia. There is a great need for education both among healthcare workers and the populace. The "witch" belief prevents seeking professional help. As nursing homes tend to be private and expensive, professional dementia care is virtually unattainable for the poor. Dementia needs a more prominent place in nursing curricula. Nurses as educators need to know the local culture and language to be accepted in the various communities. They need to visit families affected by dementia, give awareness talks in churches, schools and clinics and facilitate support groups for carers of people with dementia in the local language. Improved nurses' education in gerontology and geriatric care is needed. Trained specialist nurses may work as mediators and help eradicate the witchcraft beliefs connected to severe dementia. © 2017 John Wiley & Sons Ltd.
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When is audit and feedback effective in dementia care? A systematic review.
Sykes, Michael J; McAnuff, Jennifer; Kolehmainen, Niina
2018-03-01
Evidence-based care for people with dementia is a priority for patients, carers and clinicians and a policy priority. There is evidence that people with dementia do not always receive such care. Audit and feedback, also known as clinical audit, is an extensively-used intervention to improve care. However, there is uncertainty about the best way to use it. To investigate whether audit and feedback is effective for improving health professionals' care of people with dementia. To investigate whether the content and delivery of audit and feedback affects its effectiveness in the context of health professionals' care for people with dementia. Systematic review DATA SOURCES: The Cochrane Central Register of Controlled Trials, Prospero, Medline (1946-December week 1 2016), PsycInfo (1967-January 2017), Cinahl (1982-January 2017), HMIC (1979-January 2017), Embase (1974-2017 week 1) databases and the Science Citation Index and Social Science Citation Index were searched combining terms for audit and feedback, health personnel, and dementia. Following screening, the data were extracted using the Template for Intervention Description and Replication (TIDieR), and synthesised graphically using harvest plots and narratively. Thirteen studies met the inclusion criteria. Published studies of audit and feedback in dementia rarely described more than one cycle. None of the included studies had a comparison group: 12 were before and after designs and one was an interrupted time series without a comparison group. The median absolute improvement was greater than in studies beyond dementia which have used stronger designs with fewer risks of bias. Included studies demonstrated large variation in the effectiveness of audit and feedback. Whilst methodological and reporting limitations in the included studies hinder the ability to draw strong conclusions on the effectiveness of audit and feedback in dementia care, the large interquartile range indicates further work is needed to understand the factors which affect the effectiveness of this much-used intervention. Crown Copyright © 2017. Published by Elsevier Ltd. All rights reserved.
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Bökberg, Christina; Ahlström, Gerd; Karlsson, Staffan
2017-01-01
Quality of life in persons with dementia is, in large part, dependent on the quality of care they receive. Investigating both subjective and objective aspects of quality of care may reveal areas for improvement regarding their care, which information may ultimately enable persons with dementia to remain living in their own homes while maintaining quality of life. The aim of this study was to 1) describe self-reported quality of life in persons with dementia at risk of nursing home admission. 2) describe subjective and objective aspects of quality of care, 3) investigate the significance of quality of care for quality of life. A cross-sectional interview study design was used, based on questionnaires about quality of life (QoL-AD) and different aspects of quality of care (CLINT and quality indicators). The sample consisted of 177 persons with dementia living in urban and rural areas in Skåne County, Sweden. Descriptive and comparative statistics (Mann-Whitney U-test) were used to analyse the data. Based upon Lawton's conceptual framework for QoL in older people, persons with pain showed significantly lower quality of life in the dimensions behavioural competence ( p = 0.026) and psychological wellbeing ( p = 0.006) compared with those without pain. Satisfaction with care seemed to have a positive effect on quality of life. The overall quality of life was perceived high even though one-third of the persons with dementia had daily pain and had had a weight loss of ≥4% during the preceding year. Furthermore, 23% of the persons with dementia had fallen during the last month and 40% of them had sustained an injury when falling. This study indicates need for improvements in home care and services for persons with dementia at risk for nursing home admission. Registered nurses are responsible for nursing interventions related to pain, patient safety, skin care, prevention of accidents, and malnutrition. Therefore, it is of great importance for nurses to have knowledge about areas that can be improved to be able to tailor interventions and thereby improve quality of care outcomes such as quality of life in persons with dementia living at home.
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Using drama to improve person-centred dementia care.
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.
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2014-01-01
Background People with dementia living in care homes often have complex mental health problems, disabilities and social needs. Providing more comprehensive training for staff working in care home environments is a high national priority. It is important that this training is evidence based and delivers improvement for people with dementia residing in these environments. Well-being and Health for People with Dementia (WHELD) combines the most effective elements of existing approaches to develop a comprehensive but practical staff training intervention. This optimised intervention is based on a factorial study and qualitative evaluation, to combine: training on person-centred care, promoting person-centred activities and interactions, and providing care home staff and general practitioners with updated knowledge regarding the optimal use of psychotropic medications for persons with dementia in care homes. Design The trial will be a randomised controlled two-arm cluster single blind trial that will take place for nine months across 80 care homes in the United Kingdom. Discussion The overarching goal of this trial is to determine whether this optimised WHELD intervention is more effective in improving the quality of life and mental health than the usual care provided to people with dementia living in nursing homes. This study will be the largest and best powered randomised controlled trial (RCT) evaluating the benefits of an augmented person-centred care training intervention in care homes worldwide. Trial registration Current controlled trials ISRCTN62237498 Date registered: 5 September 2013 PMID:25016303
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Late-life dementia. Review of the APA guidelines for patient management.
Schindler, R J; Cucio, C P
2000-10-01
Management of dementia in older patients requires an individualized and multimodal approach that involves use of psychiatric, psychotherapeutic, psychosocial, and somatic tools and treatments, in addition to patient and family education. The progressive nature of dementia and the invariable presence of comorbidity complicates the management task, although symptoms characteristic of dementia's phases can provide helpful clinical clues to guide evolving care. In 1997, the American Psychiatric Association published the "Practice guideline for the treatment of patients with Alzheimer's disease and other dementias of late life." To date, this is the most comprehensive clinical guideline available to physicians caring for patients with Alzheimer's disease and other related dementias.
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Boots, Lizzy Mm; de Vugt, Marjolein E; Withagen, Hanneke Ej; Kempen, Gertrudis Ijm; Verhey, Frans Rj
2016-03-01
People with dementia increasingly depend on informal caregivers. Internet-based self-management interventions hold considerable promise for meeting the educational and support needs of early stage dementia caregivers (EDCs) at a reduced cost. This study aimed to (1) develop an online self-management program for EDC to increase self-efficacy and goal attainment, and (2) evaluate the program's feasibility and report preliminary data on effectiveness. Based on the Medical Research Council (MRC) framework for the development and evaluation of complex interventions, a stepwise approach was adopted to explore potential user needs and develop and validate the content by means of (1) focus group discussions with dementia caregivers (N=28), (2) interviews with dementia care professionals (N=11), and (3) individual think-aloud usability tests with EDC (N=2) and experts (N=2). A pilot evaluation was conducted with EDC (N=17) to test the feasibility and establish preliminary effects. Self-report measures of feasibility were completed after the completion of intervention. Self-efficacy and goal attainment were evaluated before and after the intervention. The different steps provided useful information about the needs of potential users regarding the content and delivery of the program. This resulted in the newly developed "Partner in Balance" program. At the start, system failures resulted in a high noncompleter rate (7/17, 41%), but at the end, an acceptable feasibility score of 209 (range 54-234) was found. The convenience of completing the program at home, the tailored content, and the guidance (face-to-face and online) were appraised positively. Preliminary effects on caregiver self-efficacy (P<.05) and goal attainment (T>50) were promising. Adaptations were made to the program to limit the amount of system failures and prevent high noncompleter rates. As recommended by the MRC framework, confirming the feasibility and preliminary effectiveness is a valuable step toward examining the effectiveness of this newly developed intervention. Dutch Trial Register (NTR): NTR4217; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4217 (Archived by WebCite at http://www.webcitation.org/6f6B8lvRP).
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Hansen, Anette; Hauge, Solveig; Bergland, Ådel
2017-09-11
The majority of persons with dementia are home-dwelling. To enable these persons to stay in their own homes as long as possible, a holistic, individual and flexible care is recommended. Despite a requirement for meeting psychological, social and physical needs, home care services seem to focus on patients' physical needs. Accordingly, the aim of this study was to explore how the psychosocial needs of home-dwelling, older persons with dementia were perceived, emphasized and met by home care services. A descriptive, qualitative approach was used. Data were collected through semi-structured focus group interviews with 24 health care providers in home care services from four municipalities. Data were analysed using systematic text condensation. This study showed major differences in how health care providers perceived the psychosocial needs of older home-dwelling persons with dementia and how they perceived their responsibilities for meeting those psychosocial needs. The differences in the health care providers' perceptions seemed to significantly influence the provided care. Three co-existing logics of care were identified: the physical need-oriented logic, the renouncement logic and the integrated logic. The differences in how health care providers perceived the psychosocial needs of persons with dementia and their responsibilities for meeting those needs, influenced how the psychosocial needs were met. These differences indicates a need for a clarification of how psychosocial needs should be conceptualized and who should be responsible for meeting these needs. Further, increased competence and increased consciousness of psychosocial needs and how those needs can be met, are essential for delivering high-quality holistic care that enables persons with dementia to live in their own home for as long as possible.
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Dementia skills for all: a core competency framework for the workforce in the United Kingdom.
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.
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The effectiveness of dyadic interventions for people with dementia and their caregivers.
Moon, Heehyul; Adams, Kathryn Betts
2013-11-01
The need for dyadic intervention is enhanced with increasing numbers of older adults with early-stage dementia. The purpose of this paper is to review the effects of dyadic interventions on caregivers (CGs) and care recipients (CRs) at the early stage of dementia. Four databases, AgeLine, Medline, EBSCO, and PyscINFO were searched and relevant literature from 2000 onwards was reviewed. The twelve studies identified used a variety of intervention approaches including support group, counseling, cognitive stimulation, skill training, and notebook-keeping. This review suggests that intervention programs for early-stage dementia caregiving dyads were feasible and well accepted by participants. The reviewed studies provided rich evidence of the significance of mutual understanding and communication to partners' well-being and relationship quality within the caregiving process. The findings suggest that these intervention approaches improved cognitive function of the CRs, social relations, and the relationship between the primary CG and the CR, although evidence of long-term effectiveness is lacking.
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Using a book chat to improve attitudes and perceptions of long-term care staff about dementia.
Larocque, Natasha; Schotsman, Chloe; Kaasalainen, Sharon; Crawshaw, Diane; McAiney, Carrie; Brazil, Emma
2014-05-01
This study sought to evaluate a book chat intervention based on Lisa Genova's novel, Still Alice, to influence long-term care (LTC) staff perceptions and attitudes when caring for individuals with dementia. A qualitative descriptive design was used. Eleven participants partook in a 2.5-hour book chat at a southern Ontario LTC facility. Following the book chat, participants answered two open-ended questions to assess how the book chat influenced their views on dementia. Thematic content analysis was used to analyze the qualitative questionnaire. Content analysis of the participants' responses revealed that the book chat positively influenced their attitudes and perceptions toward dementia, particularly by providing more insight into the individual's personal struggle with the disease. Furthermore, participants found that the book chat influenced their care practices. By creating innovative learning opportunities, attitudes and perceptions about dementia care can be transcended and greatly benefit staff, family, and residents. Copyright 2014, SLACK Incorporated.
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Førsund, Linn Hege; Ytrehus, Siri
2016-06-17
The purpose of this qualitative study was to explore how physical and social environments influence spouses' opportunities to maintain relationships when visiting a partner with dementia living in long-term care. Interviews with 15 spouses whose partners lived in long-term care facilities for persons with dementia, observations of physical environments and participant observations were conducted. The results showed how finding a place for spouses to connect in the long-term care facility was important in maintaining relationships. Access to individual rooms was an important feature that enabled connections throughout the phases of dementia, whereas common areas appeared more difficult to use because small spaces limited private interactions. Health personnel were important in sustaining spouses' abilities to maintain their relationships in long-term care facilities for persons with dementia. © The Author(s) 2016.
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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.
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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
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Lam, Chi Leung; Chan, W C; Mok, Cycbie C M; Li, S W; Lam, Linda C W
2006-08-01
Behavioural and psychological symptoms of dementia (BPSD) are associated with considerable burden to patients with dementia and their caregivers. Formal caregivers in residential care settings face different challenges when delivering care. This study aimed at assessing the clinical correlates of challenging BPSD using the Chinese version of the Challenging Behaviour Scale (CCBS) designed for residential care settings. One hundred and twenty-five participants were recruited from three care-and-attention homes in Hong Kong. The CCBS was administered together with the Cantonese version of Mini-Mental State Examination (MMSE), Clinical Dementia Rating (CDR), Disability Assessment for Dementia (DAD) and Neuropsychiatric Inventory (NPI) to explore the relationships between challenging behaviour and important clinical correlates. The CCBS had good internal consistency (alpha = 0.86), inter-rater (ICC = 0.79) and test-retest reliability (ICC = 0.98). A four-factor structure is demonstrated by factor analysis: hyperactivity behaviours, hypoactivity behaviours, verbally aggressive and aberrant behaviours. Challenging behaviours were associated with male gender, cognitive impairment, functional disability, neuropsychiatric symptoms, and higher caregiver's workload. The CCBS is a valid and reliable measure to assess BPSD in residential care settings in local Chinese community. It is useful in evaluating the challenges faced by formal caregivers during daily care of the dementia patients.
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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.
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Service utilisation by carers of people with dementia in rural Victoria.
Ervin, Kaye; Reid, Carol
2015-12-01
To explore the use of community and dementia-specific services by informal carers caring for someone with dementia in a rural setting. Carers of people with dementia were recruited through a variety of rural community services and invited to complete a survey related to the utilisation of community services. A total of 39 carers completed surveys. Despite 84% reporting use of the Aged Care Assessment Service and 61% reporting provision of printed information on the services available, less than half of the carers utilised commonly available support services. Only 46% received financial compensation for their carer role. Rural carers of care recipients with behavioural and psychological symptoms of dementia underutilise community services. Services that may assist with carer stress and depression and services that provide advice on the management of distressing behavioural and psychological symptoms of dementia were utilised by less than half of the carers surveyed. © 2014 AJA Inc.
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Graneheim, Ulla H; Johansson, Anneli; Lindgren, Britt-Marie
2014-06-01
Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta-ethnographic study was to describe caregivers' experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers' experiences, were included. The family caregivers' described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers' unique knowledge of their relatives' previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers. © 2013 Nordic College of Caring Science.
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Innes, Anthea; Kelly, Fiona; Dincarslan, Ozlem
2011-07-01
To report on the views of people with dementia who live in care homes and their family carers on aspects of design that are important to them, and discuss these in relation to developing physical care environments that respond to the wishes of people with dementia and their family carers. Six focus groups were held: two in Northern Ireland and four in Scotland. A total of 40 people participated in the focus groups. Twenty nine people were with dementia (24 female and five male), and 11 were family carers (10 female and one male). Carers discussed the features of a building they took into account when selecting a care home, and discussed this in relation to 'bricks and mortar versus people'. Key themes reported by people with dementia and their family carers included how the space in the environment is used, for example, what happens in the building and the presence or absence of certain design features. Outside space and wayfinding aids were identified as positive features of the home, along with a general lack of concern about ensuite provision. The results demonstrate the complexity of building design as it must provide living space acceptable to people with dementia living there and family members who visit, as well as provide a workable environment for staff. The findings highlight areas that should be considered by care home teams involved in the build of a new home or the redevelopment of an existing care home.
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Life story resources in dementia care: a review.
Kindell, Jacqueline; Burrow, Simon; Wilkinson, Ray; Keady, John David
2014-01-01
Life story work has a relatively long tradition in the caring sciences and is recognised as an important component of dementia care and practice. However, to date, there has not been a review of accessible life story resources. The paper aims to discuss these issues. Following a systematic approach to identification and inclusion, 11 life story resources were reviewed to ascertain areas of commonality and divergence between the materials. The authors were able to group the analysis under eight areas and at the end of this process, it was uncertain if life story work is a formal staff intervention or an informal activity that people with dementia and their families could engage in. Resources also varied in terms of whether the life story information was organised in a chronological way, or with topics of interest/discussion or with a combination of both. Life story evaluation and its impact on the life of the person with dementia is in need of development. Across the resources the authors identified four reasons to do life story work which the authors have named as: emotional connections; interactional connections; building new connections and practical care connections. There was limited guidance aimed at helping people with dementia to develop and compile their own life story. This paper provides new insights into the usefulness, future directions and content of life story resources in dementia care. It will be of interest to those in health and social care as well as people living with dementia.
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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
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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/
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ERIC Educational Resources Information Center
Frizzell, Linda Bane
This study attempted to define the current bases for physical exercise and activity for healthy older adults and to use those data as a basis for developing physical exercises and activities for older adults with mental impairments. An 8-week exercise program was developed and evaluated to determine its effect on satisfaction and quality of life…
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von Kutzleben, Milena; Köhler, Kerstin; Dreyer, Jan; Holle, Bernhard; Roes, Martina
2017-04-01
The majority of people with dementia in Germany live at home. These informal care arrangements, which are mostly coordinated by informal carers, are the backbone of home-based dementia care. Creating and maintaining stability is an underlying theme in informal care; however, a definition of the complex phenomenon of 'stability' in this context is still lacking. The aim was to develop a working definition of stability of home-based care arrangements for people with dementia, which can be applied in current and future research projects at the German Center for Neurodegenerative Diseases in Witten (DZNE Witten) and others. Ensuing from prior research a preliminary version of the definition was formulated. This definition was discussed in a focus group of scientific experts with expertise in dementia research and care (n = 8). After data analysis using content analysis, the definition was revised during a scientific colloquium (n = 18) and a consensus was finally reached. There were four major themes which were considered by the experts as being relevant for the definition of stability: (1) creating and maintaining stability as a continuous adaptation process, (2) a qualitative component of stability, (3) persons with dementia and informal carers as pivotal players and (4) transitions to residential care. The working definition introduced in this article reflects the authors' understanding of the phenomenon of stability of home-based care arrangements for people with dementia. In times of increasing need for evidence-based interventions it is necessary to develop elaborated definitions of complex phenomena in order to be able to systematically evaluate the efficacy of interventions on the basis of a common understanding.
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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.
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Acute hospital dementia care: results from a national audit.
Timmons, Suzanne; O'Shea, Emma; O'Neill, Desmond; Gallagher, Paul; de Siún, Anna; McArdle, Denise; Gibbons, Patricia; Kennelly, Sean
2016-05-31
Admission to an acute hospital can be distressing and disorientating for a person with dementia, and is associated with decline in cognitive and functional ability. The objective of this audit was to assess the quality of dementia care in acute hospitals in the Republic of Ireland. Across all 35 acute public hospitals, data was collected on care from admission through discharge using a retrospective chart review (n = 660), hospital organisation interview with senior management (n = 35), and ward level organisation interview with ward managers (n = 76). Inclusion criteria included a diagnosis of dementia, and a length of stay greater than 5 days. Most patients received physical assessments, including mobility (89 %), continence (84 %) and pressure sore risk (87 %); however assessment of pain (75 %), and particularly functioning (36 %) was poor. Assessment for cognition (43 %) and delirium (30 %) was inadequate. Most wards have access at least 5 days per week to Liaison Psychiatry (93 %), Geriatric Medicine (84 %), Occupational Therapy (79 %), Speech & Language (81 %), Physiotherapy (99 %), and Palliative Care (89 %) Access to Psychology (9 %), Social Work (53 %), and Continence services (34 %) is limited. Dementia awareness training is provided on induction in only 2 hospitals, and almost half of hospitals did not offer dementia training to doctors (45 %) or nurses (48 %) in the previous 12 months. Staff cover could not be provided on 62 % of wards for attending dementia training. Most wards (84 %) had no dementia champion to guide best practice in care. Discharge planning was not initiated within 24 h of admission in 72 % of cases, less than 40 % had a single plan for discharge recorded, and 33 % of carers received no needs assessment prior to discharge. Length of stay was significantly greater for new discharges to residential care (p < .001). Dementia care relating to assessment, access to certain specialist services, staffing levels, training and support, and discharge planning is sub-optimal, which may increase the risk of adverse patient outcomes and the cost of acute care. Areas of good practice are also highlighted.
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Conceptualisation of self-management intervention for people with early stage dementia.
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.
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Strandenæs, Margit Gausdal; Lund, Anne; Rokstad, Anne Marie Mork
2018-06-01
Day care is assumed to promote independence in home-dwelling people with dementia, increase well-being and enhance social stimulation. Few studies have directly engaged people with dementia to better understand the benefits and impacts of such services. The aim of this study was to explore attendees' experiences with day care designed for people with dementia. This study had a qualitative descriptive design and included individual interviews with 17 users attending day care. The analysis was undertaken using content analyses. The participants reported that day care had a positive influence on their physical functioning, cognition, well-being, and situation at home because they were provided with social stimulation, meals, and activities. Day care contributed to the maintenance of a rhythm and structure in everyday life. Furthermore, the staff contributed to making the day care a safe place to be and enhanced a sense of belonging. This study reveals the positive impact of day care on the daily lives of people with dementia because this service contributes to the enhancement of activities and social support, prevents isolation, and enhances practical and cognitive functioning as experienced by the users. The staff has a major impact on the experience of the participants in the day care.
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Caring for seniors living with dementia means caring for their caregivers too.
Poirier, Annie; Voyer, Philippe; Légaré, France; Morin, Michèle; Witteman, Holly O; Kröger, Edeltraut; Martineau, Bernard; Rodríguez, Charo; Giguere, Anik Mc
2018-01-22
To improve the care of seniors living with dementia, current initiatives typically target better identification and treatment of the patient. Our recent survey, however, shows we should also focus more on the needs of the informal caregivers who care for this population in primary care settings. This three-round Delphi survey sought caregivers' views on the most frequent and difficult decisions that seniors with dementia, their informal caregivers, and health care providers face in primary care settings in the province of Quebec. Respondents consisted of 31 health care professionals, informal caregivers, managers, representatives of community-based organizations devoted to these seniors, and clinical researchers involved in the organization of care or services to seniors with dementia. When we asked respondents to rank 27 common but difficult decisions involving benefit/harm trade-offs, 83% ranked the decision to choose an option to reduce the burden of informal caregivers as one of the five most important decisions. Choosing a treatment to manage agitation, aggression or psychotic symptoms followed closely, with 79% of respondents selecting it as one of the five most important decisions. Our results point to the importance of attending to the needs of informal caregivers and improving the management of behavioural and psychological symptoms of dementia.
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The mourning process of older people with dementia who lost their spouse.
Watanabe, Akiko; Suwa, Sayuri
2017-09-01
To explore the mourning process of people with dementia who have lost their spouse, using family caregivers' and professionals' perspectives and to devise grief care for people with dementia. There have been studies on the loss of one's spouse; however, little is known about widows and widowers with dementia as they may find it hard to tell their perception and feelings to others accurately because of cognitive impairment. Qualitative descriptive study using semi-structured interviews. Seven family caregivers and six professional caregivers from day care centres were interviewed between June and September 2015. Qualitative content analysis was used to identify mourning behaviours of people with dementia. In the mourning process of people with dementia, different behaviours were found according to dementia stages and different circumstances. In FAST2, they could remember their spouse's death. In FAST4 -6, it took 1 year to be able to perceive their spouse's death and more time to store it. In FAST 7, people with dementia did not discern his spouse's death throughout the process. Furthermore, it was revealed that people with dementia followed a different mourning process from conventional ones. In the care of widows and widowers with dementia it is crucial to adjust circumstances to allow people with dementia to guess reality. Further studies are needed to clarify differences between the mourning process of people with dementia and that of intact older people to develop a grief model and educational programmes. © 2017 John Wiley & Sons Ltd.
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2013-01-01
Background Dementia patients are often cared for in institutional arrangements, which are associated with substantial spending on professional long-term care services. Nevertheless, there is little evidence on the exact cost differences between community-based and institutional dementia care, especially when it comes to the distinct health care services. Adopting the perspective of the German social security system, which combines Statutory Health Insurance and Compulsory Long-Term Care Insurance (payer perspective), our study aimed to compare community-living and institutionalized dementia patients regarding their health care service utilization profiles and to contrast the respective expenditures. Methods We analysed 2006 claims data for 2,934 institutionalized and 5,484 community-living individuals stratified by so-called care levels, which reflect different needs for support in activities of daily living. Concordant general linear models adjusting for clinical and demographic differences were run for each stratum separately to estimate mean per capita utilization and expenditures in both settings. Subsequently, spending for the community-living and the institutionalized population as a whole was compared within an extended overall model. Results Regarding both settings, health and long-term care expenditures rose the higher the care level. Thus, long-term care spending was always increased in nursing homes, but health care spending was comparable. However, the underlying service utilization profiles differed, with nursing home residents receiving more frequent visits from medical specialists but fewer in-hospital services and anti-dementia drug prescriptions. Altogether, institutional care required additional yearly per capita expenses of ca. €200 on health and ca. €11,200 on long-term care. Conclusion Community-based dementia care is cost saving from the payer perspective due to substantially lower long-term care expenditures. Health care spending is comparable but community-living and institutionalized individuals present characteristic service utilization patterns. This apparently reflects the existence of setting-specific care strategies. However, the bare economic figures do not indicate whether these different concepts affect the quality of care provision and disregard patient preferences and caregiver-related aspects. Hence, additional research combining primary and secondary data seems to be required to foster both, sound allocation of scarce resources and the development of patient-centred dementia care in each setting. PMID:23286826
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Schwarzkopf, Larissa; Menn, Petra; Leidl, Reiner; Graessel, Elmar; Holle, Rolf
2013-01-03
Dementia patients are often cared for in institutional arrangements, which are associated with substantial spending on professional long-term care services. Nevertheless, there is little evidence on the exact cost differences between community-based and institutional dementia care, especially when it comes to the distinct health care services. Adopting the perspective of the German social security system, which combines Statutory Health Insurance and Compulsory Long-Term Care Insurance (payer perspective), our study aimed to compare community-living and institutionalized dementia patients regarding their health care service utilization profiles and to contrast the respective expenditures. We analysed 2006 claims data for 2,934 institutionalized and 5,484 community-living individuals stratified by so-called care levels, which reflect different needs for support in activities of daily living. Concordant general linear models adjusting for clinical and demographic differences were run for each stratum separately to estimate mean per capita utilization and expenditures in both settings. Subsequently, spending for the community-living and the institutionalized population as a whole was compared within an extended overall model. Regarding both settings, health and long-term care expenditures rose the higher the care level. Thus, long-term care spending was always increased in nursing homes, but health care spending was comparable. However, the underlying service utilization profiles differed, with nursing home residents receiving more frequent visits from medical specialists but fewer in-hospital services and anti-dementia drug prescriptions. Altogether, institutional care required additional yearly per capita expenses of ca. €200 on health and ca. €11,200 on long-term care. Community-based dementia care is cost saving from the payer perspective due to substantially lower long-term care expenditures. Health care spending is comparable but community-living and institutionalized individuals present characteristic service utilization patterns. This apparently reflects the existence of setting-specific care strategies. However, the bare economic figures do not indicate whether these different concepts affect the quality of care provision and disregard patient preferences and caregiver-related aspects. Hence, additional research combining primary and secondary data seems to be required to foster both, sound allocation of scarce resources and the development of patient-centred dementia care in each setting.
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van Hout, H P J; Macneil Vroomen, J L; Van Mierlo, L D; Meiland, F J M; Moll van Charante, E P; Joling, K J; van den Dungen, P; Dröes, R M; van der Horst, H E; de Rooij, S E J A
2014-04-01
Dementia care in The Netherlands is shifting from fragmented, ad hoc care to more coordinated and personalized 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. Community-dwelling individuals with a dementia diagnosis with an informal caregiver are included. The primary outcome measure is the Neuropsychiatric Inventory for the people with dementia and the General Health Questionnaire for their caregivers. Costs are measured from a societal perspective. Semi-structured interviews with stakeholders based on the theoretical model of adaptive implementation are planned. 521 pairs of persons with dementia and their primary informal caregiver were included and are followed over two years. In the linked model substantially more impeding factors for implementation were identified compared with the model. This article describes the design of an evaluation study of two case management models along with clinical and economic data from persons with dementia and caregivers. The impeding and facilitating factors differed substantially between the two models. Further results on cost-effectiveness are expected by the beginning of 2015. This is a Dutch adaptation of MacNeil Vroomen et al., Comparing Dutch case management care models for people with dementia and their caregivers: The design of the COMPAS study.
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An evaluation of primary care led dementia diagnostic services in Bristol.
Dodd, Emily; Cheston, Richard; Fear, Tina; Brown, Ellie; Fox, Chris; Morley, Clare; Jefferies, Rosalyn; Gray, Richard
2014-11-29
Typically people who go to see their GP with a memory problem will be initially assessed and those patients who seem to be at risk will be referred onto a memory clinic. The demographic forces mean that memory services will need to expand to meet demand. An alternative may be to expand the role of primary care in dementia diagnosis and care. The aim of this study was to contrast patient, family member and professional experience of primary and secondary (usual) care led memory services. A qualitative, participatory study. A topic guide was developed by the peer and professional panels. Data were collected through peer led interviews of people with dementia, their family members and health professionals. Eleven (21%) of the 53 GP practices in Bristol offered primary care led dementia services. Three professional panels were held and were attended by 9 professionals; nine carers but no patients were involved in the three peer panels. These panels identified four main themes: GPs rarely make independent dementia diagnosis; GPs and memory nurses work together; patients and carers generally experience a high quality diagnostic service; an absence of post diagnostic support. Evidence relating to these themes was collected through a total of 46 participants took part; 23 (50%) in primary care and 23 (50%) in the memory service. Patients and carers were generally satisfied with either primary or secondary care led approaches to dementia diagnosis. Their major concern, shared with many health care professionals, was a lack of post diagnostic support.
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The Effect of Aroma Hand Massage Therapy for People with Dementia.
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.
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Nakanishi, Miharu; Endo, Kaori; Hirooka, Kayo; Granvik, Eva; Minthon, Lennart; Nägga, Katarina; Nishida, Atsushi
2018-03-01
Little is known about the effectiveness of a psychosocial behaviour management programme on home-dwelling people with dementia. We developed a Behaviour Analytics & Support Enhancement (BASE) programme for care managers and professional caregivers of home care services in Japan. We investigated the effects of BASE on challenging behaviour of home-dwelling people with dementia. A cluster-randomized controlled trial was conducted with home care providers from 3 different districts in Tokyo. Each provider recruited persons with dementia aged 65 years or older to receive home care in the BASE programme in August 2016. An online monitoring and assessment system was introduced to the intervention group for repeated measures of challenging behaviour with a total score of the Neuropsychiatric Inventory. Care professionals in both the intervention and control groups evaluated challenging behaviour of persons with dementia at baseline (September 2016) and follow-up (February 2017). A majority of persons with dementia had Alzheimer disease (59.3%). One-hundred and forty-one persons with dementia were included in the intervention group and 142 in the control group. Multilevel modelling revealed a significant reduction in challenging behaviour in the intervention group after 6 months (mean score, 18.3 to 11.2) compared with that of the control group (11.6 to 10.8; P < .05). The implementation of the BASE programme resulted in a reduction of challenging behaviour of home-dwelling people with dementia. Future research should examine the long-term effects of behaviour management programmes on behaviour, nursing home placement, and hospital admission of home-dwelling people with dementia. Copyright © 2017 John Wiley & Sons, Ltd.
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Intelligent Assistive Technology for Alzheimer's Disease and Other Dementias: A Systematic Review.
Ienca, Marcello; Fabrice, Jotterand; Elger, Bernice; Caon, Maurizio; Pappagallo, Alessandro Scoccia; Kressig, Reto W; Wangmo, Tenzin
2017-01-01
Intelligent assistive technologies (IATs) have the potential of offering innovative solutions to mitigate the global burden of dementia and provide new tools for dementia care. While technological opportunities multiply rapidly, clinical applications are rare as the technological potential of IATs remains inadequately translated into dementia care. In this article, the authors present the results of a systematic review and the resulting comprehensive technology index of IATs with application in dementia care. Computer science, engineering, and medical databases were extensively searched and the retrieved items were systematically reviewed. For each IAT, the authors examined their technological type, application, target population, model of development, and evidence of clinical validation. The findings reveal that the IAT spectrum is expanding rapidly in volume and variety over time, and encompasses intelligent systems supporting various assistive tasks and clinical uses. At the same time, the results confirm the persistence of structural limitations to successful adoption including partial lack of clinical validation and insufficient focus on patients' needs. This index is designed to orient clinicians and relevant stakeholders involved in the implementation and management of dementia care across the current capabilities, applications, and limitations of IATs and to facilitate the translation of medical engineering research into clinical practice. In addition, a discussion of the major methodological challenges and policy implications for the successful and ethically responsible implementation of IAT into dementia care is provided.
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Dance for Individuals With Dementia.
Lapum, Jennifer L; Bar, Rachel J
2016-03-01
The movement and music associated with dance plays an important role in many individuals' lives and can become imprinted upon the body and mind. Dance is thus closely associated with memory because of these deep connections. Without conscious thought, dance has the potential to be initiated as individuals age. In the current article, the authors share narrative reflections about their experiences with, and the potential of, dance as an intervention for aging populations diagnosed with dementia-related diseases. They draw upon their experiences in working with the aging population and a dance program currently being developed by Canada's National Ballet School and Baycrest Health Sciences for individuals with dementia-related diseases in long-term care. The current article is structured as dialogue between the authors because it mimics dance as a dialogical encounter between movement and music, and/or between individuals. Copyright 2016, SLACK Incorporated.
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Strengthening the dementia care triad: identifying knowledge gaps and linking to resources.
Jensen, Christine J; Inker, Jennifer
2015-05-01
This article describes a project to identify the needs of family caregivers and health care providers caring for persons with dementia. Participants included 128 caregivers, who completed a survey, and 27 health care providers, who participated in a focus group and completed a survey. Caregivers reported their primary source of information about the disease was the doctor; however, the majority also reported they were primarily informed of medications and not about needed resources. Health care providers identified limited time with patients and families, and lack of awareness of community services, as their main challenges. Recommendations include strengthening the partnership between physicians, patients, and caregivers (the dementia care triad) through additional support and training for physicians and caregivers, increasing awareness of the Alzheimer's Association, and utilization of technology for families and professionals to track the needs of persons with dementia. © The Author(s) 2014.
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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
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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.
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Dementia in Ontario: Prevalence and Health Services Utilization
ERIC Educational Resources Information Center
Tranmer, J. E.; Croxford, R.; Coyte, P. C.
2003-01-01
To understand the impact of ongoing reform of mental health and dementia care in Ontario, an examination of prevalence and health services utilization rates is needed. However, there exists a gap in current prevalence and health services research specific to dementia care in Ontario. The objective of this study was to address these concerns using…
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Dementia Guide for Carers and Care Providers.
2017-05-10
This app is for carers of people with dementia. Developed by Health Education England's Thames Valley team in partnership with the University of Reading and in collaboration with healthcare professionals and carers, it offers practical information to support users' understanding of the progressive nature of dementia and the challenges of caring for someone with the condition.
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Measuring Family System Characteristics in Families Caring for Dementia Patients.
ERIC Educational Resources Information Center
Niederehe, George; And Others
This paper describes an ongoing study evaluating families that provide in-home care to elderly relatives wth dementia. Characteristics of the study, which include a focus on progressive senile dementia, use of a clinical approach, longitudinal design, descriptive nature, focus on the dyad of patient and primary caregiver, and use of videotaping…
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De Vriendt, Patricia; Cornelis, Elise; Desmet, Valerie; Vanbosseghem, Ruben; Van de Velde, Dominique
2018-01-01
Professionals in dementia-care ought to be able to work within a Bio-Psycho-Social model. The objectives were to examine whether dementia-care is delivered in a Bio-Psycho-Social way, to explore the influencing factors and to evaluate the factorial validity of the 'Bio-Psycho-Social-Dementia-Care scale'. 413 healthcare-professionals completed the 'Bio-Psycho-Social-Dementia-Care scale'. Differences between groups (settings, professions, years of experience) were calculated with a student's t-test and one-way ANOVA. The facture structure of the scale was evaluated using a confirmatory factor analysis. The factor-analysis confirmed the 5 subscale-structure (1) networking, (2) using the client's expertise, (3) assessment and reporting, (4) professional knowledge and skills and (5) using the environment. (No significant differences were found between professionals in residential care and community care for the subscales 'networking' and 'using the client's expertise'. Professionals in residential care score higher than community care for 'assessment and reporting' (p<0,05) and 'professional knowledge and skills' (p<0,01) but lower for 'using the environment' (p<0,001). The juniors score higher for 'professional knowledge' compared to seniors (p<0,01) and the seniors score better for 'professional experience' (p<0,01). The Cure and Care disciplines and the Therapy disciplines had higher values in 'assessment and reporting' compared to the Social Support disciplines (p<0,001 and p<0.001). The Therapy disciplines scored higher in 'using professional knowledge and skills' compared to the Social Support group (p 0.021) and the Cure and Care disciplines (p<0,001). The Social Support disciplines scored higher in 'using the environment' compared to the Therapy disciplines (p<0.001) and the Cure and care disciplines (p<0.001). The Bio-Psycho-Social-Dementia-scale is a valid tool and offers opportunities not only to rate, but also to improve Bio-Psycho-Social functioning in dementia-care: increase interdisciplinary collaboration, facilitate assessment, combine the strengths of the different professions and install a heterogeneous team with regard to age and experience.
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Toba, Kenji
2017-07-01
The Organized Registration for the Assessment of dementia on Nationwide General consortium toward Effective treatment in Japan (ORANGE platform) is a recently established nationwide clinical registry for dementia. This platform consists of multiple registries of patients with dementia stratified by the following clinical stages: preclinical, mild cognitive impairment, early-stage, and advanced-stage dementia. Patients will be examined in a super-longitudinal fashion, and their lifestyle, social background, genetic risk factors, and required care process will be assessed. This project is also notable because the care registry includes information on the successful, comprehensive management of patients with dementia. Therefore, this multicenter prospective cohort study will contribute participants to all clinical trials for Alzheimer's disease as well as improve the understanding of individuals with dementia.
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Comfort goal of care and end-of-life outcomes in dementia: A prospective study.
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.
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Mitchell, Janet I; Long, Janet C; Braithwaite, Jeffrey; Brodaty, Henry
2016-02-01
Dementia is a syndrome associated with stigma and social isolation. Forty-two percent of people with dementia in the United States and almost 40% in the United Kingdom live in assisted living and residential care facilities. Up to 90% of residents with dementia experience behavioral and psychological symptoms of dementia (BPSD). Currently psychotropic drugs are often used to manage BPSD, despite the drugs' limited efficacy and adverse effects. Even though psychosocial approaches are as effective as medical ones without side effects, their uptake has been slow. Social networks that investigate the structure of relationships among residents and staff may represent an important resource to increase the uptake of psychosocial approaches and facilitate improvements in care. To conduct a systematic review of social network studies set in long-term care (LTC), including residents with dementia, and identify network factors influencing the care available to residents. Peer-reviewed articles across CINAHL, EMBASE, IBSS, Medline, PsychInfo, Scopus, and Web of Science were searched from January 1994 to December 2014 inclusive, using PRISMA guidelines. Studies included those examining social networks of residents or staff in LTC. Nine articles from studies in the United States, Europe, Asia, and Australia met search criteria. Resident networks had few social connections. One study proposed that residents with high centrality be encouraged to welcome new residents and disseminate information. The high density in 2 staff network studies was associated with the cooperation needed to provide care to residents with dementia. Staff's boundary-spanning led to higher-status nurses becoming more involved in decision-making and problem-solving in one study. In another, the outcome was staff treating residents with more respect and actively caring for them. These studies suggest interventions using a network approach may improve care services in LTC. Copyright © 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
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Life-span perspective of personality in dementia.
Kolanowski, A M; Whall, A L
1996-01-01
To propose an alternative view of personality change in dementia by presenting existing evidence for the continuity of personality. As the population continues to age, dementing illnesses will account for a greater proportion of morbidity and mortality; the care of these people will have a significant effect on the health care system. Life-span perspective of personality continuity. SCOPE METHOD: Review of current literature on personality in dementia using Medline, 1980-1994; CINAHL, 1990-1994; and Psych Lit., 1980-1994. Although there are systematic shifts in personality with dementia, individuals tend to maintain their unique pattern of premorbid personality traits. The personalities of dementia patients seem to reflect adaptive patterns that served them in the past. Use of a life-span perspective can enhance individualized care for demented patients and advance theory development.
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Moyle, Wendy; Bramble, Marguerite; Jones, Cindy; Murfield, Jenny
2018-03-01
Social robots such as Paro, a therapeutic companion robot, have recently been introduced into dementia care as a means to reduce behavioural and psychological symptoms of dementia. The purpose of this study was to explore care staff perceptions of Paro and a look-alike non-robotic animal, including benefits and limitations in dementia care. The study assumed a descriptive qualitative approach, nested within a large cluster-randomised controlled trial. We interviewed a subsample of 20 facility care staff, from nine long-term care facilities in Southeast Queensland, Australia. Thematic analysis of the data, which was inductive and data-driven, was undertaken with the assistance of the qualitative software, ATLAS.ti®. The findings refer to four categories: increasing excitement for Paro and decreasing enthusiasm for Plush Toy; value and function of Paro; opportunities for engagement; and alternatives vs. robustness. Staff caring for people with dementia preferred Paro compared to a look-alike Plush Toy. Staff identified that Paro had the potential to improve quality of life for people with dementia, whereas the Plush Toy had limitations when compared to Paro. However, participants expressed concern that the cost of Paro could reduce opportunities for use within aged care.
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Wübbeler, Markus; Thyrian, Jochen René; Michalowsky, Bernhard; Erdmann, Pia; Hertel, Johannes; Holle, Bernhard; Gräske, Johannes; Schäfer-Walkmann, Susanne; Hoffmann, Wolfgang
2017-01-01
Outpatient dementia healthcare is predominantly fragmented, and dementia networks (DNs) represent an integrated care concept to overcome this problem. Little is known about the patients of these networks with regard to utilisation of physicians and associated factors. We interviewed 560 caregivers of people with dementia in 13 different DNs in Germany in 2013 and assessed socio-demographics, clinical data and physician utilisation. Networks were categorised in predominantly medical DNs and community-oriented DNs. Descriptive and multivariate statistical models were used to identify associated factors between DNs and users' data. Overall, the users of networks received high rates of physician care; 93% of the sample stated at least one contact with a primary care physician within the last 6 months, and 74% had been treated by a specialist (neurology/psychiatry physician). Only 5% of the sample had no contact with a physician in the 6 months preceding the interview. Females showed a lower odds for physician specialist consultations (OR = 0.641). Users of medical DNs receive greater specialist consultations overall (OR = 8.370). Compared to the German general population and people with dementia in other settings, users of DNs receive physician care more regularly, especially with regard to the consultations of neurologist/psychiatrists. Therefore, DNs seem to perform a supportive role within the integration of physician healthcare. More research is needed on the appropriate relationship between the needs of the people with dementia and utilisation behaviour. © 2016 John Wiley & Sons Ltd.
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Ethical issues in caring for patients with dementia.
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.
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Moments of homecoming among people with advanced dementia disease in a residential care facility.
Norberg, Astrid; Ternestedt, Britt-Marie; Lundman, Berit
2017-07-01
This study concerns moments of homecoming among people with advanced dementia disease living in a residential care facility. Our main finding from participant observations with nine residents was that the residents showed moments of homecoming, i.e. they alternated between verbal and/or nonverbal expressions of feeling at home and of not feeling at home. If care providers understand that they can help people with advanced dementia disease experience moments of homecoming, they can focus on aspects of care that can promote these experiences.
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Relevance of Dementia in Atrial Fibrillation Patients within a Specific European Health Care Area.
Rodríguez-Mañero, Moisés; López-Pardo, Estrella; Cordero, Alberto; Kreidieh, Omar; Novo Platas, José; Valdés, Luis; Cid-Menendez, Adrian; García-Seara, Javier; Pereira-Vázquez, María; Martínez-Sande, Jose-Luis; Ruano, Alberto; Peña-Gil, Carlos; Mazón, Pilar; García-Acuña, Jose María; González-Juanatey, José Ramón
2018-05-15
Atrial fibrillation might increase the risk of dementia. We aim to test the hypothesis that dementia could reclassify the actual risk of stroke and death predicted by the CHA2DS2-VASc in patients with atrial fibrillation (AF). A prospective study performed in a specific health care area. From our health care area (n = 348,985), throughout 2013, AF was codified in 7,990 (2.08%). Mean age was 76.83 ± 10.5, mean CHA2DS2-VASc = 3.5, 4,056 (50.8%) were females and 287 (3.6%) were diagnosed to have dementia. Patients with dementia were older and presented a higher rate of all the components of the CHA2DS2-VASc-expect vasculopathy. Differences in overall mortality were observed but not in stroke and haemorrhagic events. After propensity score matched analysis, dementia was independently associated with all-cause mortality. Addition of dementia to CHA2DS2-VASc reclassified 7.7 and 16.6% of the cohort with regard to thromboembolic events and death risk respectively. Patients with dementia presented a more adverse risk profile, with significant differences in all-cause mortality. © 2018 S. Karger AG, Basel.
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Online Education Improves Dementia Knowledge: Evidence From an International Intervention.
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.
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Donnelly, Sarah; Begley, Emer; O'Brien, Marita
2018-01-01
In recent years, there have been national and international policy advances around capacity and decision-making and an apparent burgeoning rights-based approach to the issue, all of which have the potential to impact on the experience for people with dementia in Ireland. There is little evidence however on whether these policies and principles are being translated into practice and whether traditional paternalistic approaches to decision-making are being challenged. To gain insight into current practice, research was undertaken with social workers working with older people in Ireland; reporting on the involvement of people living with dementia in care-planning processes. Data collection included a mixed method approach; an on-line survey of social workers from across the country who reported on their open caseload during the month of June 2015 (N = 38 social workers reporting on the experiences of 788 older people, of which 39% of older people had a formal diagnosis of dementia). In addition, semi-structured telephone interviews were conducted with social workers working in the nine Community Health Organisation areas (N = 21). Findings show that people with dementia were high users of social work services, accounting for 44.5% of the client group. Social workers reported that there were no standardised approaches to how Health and Social Care Professionals involved people with dementia in care planning and decision-making. Overall, people with dementia were more likely to be excluded from decision-making processes due to (i) assumptions that they lacked capacity, (ii) family members preferences that the person was not involved, (iii) communication difficulties, (iv) time constraints, (v) little or no opportunity given or (vi) the person delegated decision-making to others. Good practices were identified through multidisciplinary team approaches and formal care planning meetings. This research highlights variability in how people with dementia participate in decision-making around their care. It sheds light on existing barriers which challenge the full implementation of the Irish Assisted Decision-Making legislation; highlighting the need for appropriate guidance and education for Health and Social Care Professionals. The findings also show that family dynamics and existing relationships can play a role in how people with dementia participate and are involved. To ensure consistent opportunities for participation, effective practices and approaches to supporting the participation of people living with dementia in care planning needs to be developed and rolled out in all care settings through increased training and adoption of standardised approaches.
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The effect of therapeutic touch on behavioral symptoms of persons with dementia.
Woods, Diana Lynn; Craven, Ruth F; Whitney, Joie
2005-01-01
Approximately 80% of nursing home residents who suffer from Alzheimer's disease and related dementia develop behavioral symptoms of dementia. Given the deleterious side effects of pharmacologic therapy in this population there is an urgent need for clinical trials of nonpharmacologic interventions. To examine the effect of therapeutic touch on the frequency and intensity of behavioral symptoms of dementia. A randomized, double-blind, three-group experimental study: experimental (therapeutic touch), placebo (placebo therapeutic touch), and control (usual care). Fifty-seven residents, aged 67 to 93 years, exhibiting behavioral symptoms of dementia, were randomized to one of the three groups within each of three Special Care Units within three Long-Term Care facilities in a western Canadian province. Behavioral observation was completed every 20 minutes from 8:00AM to 6:00PM for three days pre-intervention and for three days post-intervention by trained observers who were blind to group assignment. The intervention consisted of therapeutic touch given twice daily for 5-7 minutes for three days between 10:00AM and 11:30PM and between 3:00PM and 4:30PM (N = 57). The main outcome variable was overall behavioral symptoms of dementia, consisting of six categories of behaviors: manual manipulation (restlessness), escape restraints, searching and wandering, tapping and banging, pacing and walking, and vocalization. Analysis of variance (ANOVA) (F = 3.331, P = .033) and the Kruskal-Wallis test (chi2 = 6.661, P = .036) indicated a significant difference in overall behavioral symptoms of dementia, manual manipulation and vocalization when the experimental group was compared to the placebo and control groups. The experimental (significant) was more effective in decreasing behavioral symptoms of dementia than usual care, while the placebo group indicated a decreasing trend in behavioral symptoms of dementia compared to usual care. Therapeutic touch offers a nonpharmacological, clinically relevant modality that could be used to decrease behavioral symptoms of dementia, specifically manual manipulation (restlessness) and vocalization, two prevalent behaviors.
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Lee, Richard Philip; Bamford, Claire; Poole, Marie; McLellan, Emma; Exley, Catherine; Robinson, Louise
2017-01-01
Background Evidence consistently shows that people with advanced dementia experience suboptimal end of life care compared to those with cancer; with increased hospitalisation, inadequate pain control and fewer palliative care interventions. Understanding the views of those service managers and frontline staff who organise and provide care is crucial in order to develop better end of life care for people with dementia. Methods and findings Qualitative interviews and focus groups were conducted from 2013 to 2015 with 33 service managers and 54 staff involved in frontline care, including doctors, nurses, nursing and care home managers, service development leads, senior managers/directors, care assistants and senior care assistants/team leads. All were audio recorded and transcribed verbatim. Participants represented a diverse range of service types and occupation. Transcripts were subject to coding and thematic analysis in data meetings. Analysis of the data led to the development of seven key themes: Recognising end of life (EOL) and tools to support end of life care (EOLC), Communicating with families about EOL, Collaborative working, Continuity of care, Ensuring comfort at EOL, Supporting families, Developing and supporting staff. Each is discussed in detail and comprise individual and collective views on approaches to good end of life care for people with dementia. Conclusions The significant challenges of providing good end of life care for people with dementia requires that different forms of expertise should be recognised and used; including the skills and knowledge of care assistants. Successfully engaging with people with dementia and family members and helping them to recognise the dying trajectory requires a supportive integration of emotional and technical expertise. The study strengthens the existing evidence base in this area and will be used with a related set of studies (on the views of other stakeholders and observations and interviews conducted in four services) to develop an evidence-based intervention. PMID:28622379
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Lee, Richard Philip; Bamford, Claire; Poole, Marie; McLellan, Emma; Exley, Catherine; Robinson, Louise
2017-01-01
Evidence consistently shows that people with advanced dementia experience suboptimal end of life care compared to those with cancer; with increased hospitalisation, inadequate pain control and fewer palliative care interventions. Understanding the views of those service managers and frontline staff who organise and provide care is crucial in order to develop better end of life care for people with dementia. Qualitative interviews and focus groups were conducted from 2013 to 2015 with 33 service managers and 54 staff involved in frontline care, including doctors, nurses, nursing and care home managers, service development leads, senior managers/directors, care assistants and senior care assistants/team leads. All were audio recorded and transcribed verbatim. Participants represented a diverse range of service types and occupation. Transcripts were subject to coding and thematic analysis in data meetings. Analysis of the data led to the development of seven key themes: Recognising end of life (EOL) and tools to support end of life care (EOLC), Communicating with families about EOL, Collaborative working, Continuity of care, Ensuring comfort at EOL, Supporting families, Developing and supporting staff. Each is discussed in detail and comprise individual and collective views on approaches to good end of life care for people with dementia. The significant challenges of providing good end of life care for people with dementia requires that different forms of expertise should be recognised and used; including the skills and knowledge of care assistants. Successfully engaging with people with dementia and family members and helping them to recognise the dying trajectory requires a supportive integration of emotional and technical expertise. The study strengthens the existing evidence base in this area and will be used with a related set of studies (on the views of other stakeholders and observations and interviews conducted in four services) to develop an evidence-based intervention.
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Kao, Chieh-Chun; Lin, Li-Chan; Wu, Shiao-Chi; Lin, Ker-Neng; Liu, Ching-Kuan
2016-01-01
Background Hyperphagia increases eating-associated risks for people with dementia and distress for caregivers. The purpose of this study was to compare the long-term effectiveness of spaced retrieval (SR) training and SR training combined with Montessori activities (SR + M) for improving hyperphagic behaviors of special care unit residents with dementia. Methods The study enrolled patients with dementia suffering from hyperphagia resident in eight institutions and used a cluster-randomized single-blind design, with 46 participants in the SR group, 49 in the SR + M group, and 45 participants in the control group. For these three groups, trained research assistants collected baseline data on hyperphagic behavior, pica, changes in eating habits, short meal frequency, and distress to caregivers. The SR and SR + M groups underwent memory training over a 6-week training period (30 sessions), and a generalized estimating equation was used to compare data of all the three groups of subjects obtained immediately after the training period and at follow-ups 1 month, 3 months, and 6 months later. Results Results showed that the hyperphagic and pica behaviors of both the SR and SR + M groups were significantly improved (P<0.001) and that the effect lasted for 3 months after training. The improvement of fast eating was significantly superior in the SR + M group than in the SR group. The improvement in distress to caregivers in both intervention groups lasted only until the posttest. Improvement in changes in eating habits of the two groups was not significantly different from that of the control group. Conclusion SR and SR + M training programs can improve hyperphagic behavior of patients with dementia. The SR + M training program is particularly beneficial for the improvement of rapid eating. Caregivers can choose a suitable memory training program according to the eating problems of their residents. PMID:27307717
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Kao, Chieh-Chun; Lin, Li-Chan; Wu, Shiao-Chi; Lin, Ker-Neng; Liu, Ching-Kuan
2016-01-01
Hyperphagia increases eating-associated risks for people with dementia and distress for caregivers. The purpose of this study was to compare the long-term effectiveness of spaced retrieval (SR) training and SR training combined with Montessori activities (SR + M) for improving hyperphagic behaviors of special care unit residents with dementia. The study enrolled patients with dementia suffering from hyperphagia resident in eight institutions and used a cluster-randomized single-blind design, with 46 participants in the SR group, 49 in the SR + M group, and 45 participants in the control group. For these three groups, trained research assistants collected baseline data on hyperphagic behavior, pica, changes in eating habits, short meal frequency, and distress to caregivers. The SR and SR + M groups underwent memory training over a 6-week training period (30 sessions), and a generalized estimating equation was used to compare data of all the three groups of subjects obtained immediately after the training period and at follow-ups 1 month, 3 months, and 6 months later. Results showed that the hyperphagic and pica behaviors of both the SR and SR + M groups were significantly improved (P<0.001) and that the effect lasted for 3 months after training. The improvement of fast eating was significantly superior in the SR + M group than in the SR group. The improvement in distress to caregivers in both intervention groups lasted only until the posttest. Improvement in changes in eating habits of the two groups was not significantly different from that of the control group. SR and SR + M training programs can improve hyperphagic behavior of patients with dementia. The SR + M training program is particularly beneficial for the improvement of rapid eating. Caregivers can choose a suitable memory training program according to the eating problems of their residents.
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van der Plas, Annicka Gm; Oosterveld-Vlug, Mariska G; Pasman, H Roeline W; Onwuteaka-Philipsen, Bregje D
2017-04-01
The four main diagnostic groups for palliative care provision are cancer, chronic obstructive pulmonary disease, heart failure and dementia. But comparisons of costs and care in the last year of life are mainly directed at cancer versus non-cancer or within cancer patients. Our aim is to compare the care and expenditures in their last year of life for Dutch patients with cancer, chronic obstructive pulmonary disease, heart failure or dementia. Data from insurance company Achmea (2009-2010) were linked to information on long-term care at home or in an institution, the National Hospital Registration and Causes of Death-Registry from Statistics Netherlands. For patients who died of cancer ( n = 8658), chronic obstructive pulmonary disease ( n = 1637), heart failure ( n = 1505) or dementia ( n = 3586), frequencies and means were calculated, Lorenz curves were drawn up and logistic regression was used to compare patients with high versus low expenditures. For decedents with cancer and chronic obstructive pulmonary disease, the highest costs were for hospital admissions. For decedents with heart failure, the highest costs were for the care home (last 360 days) and hospital admissions (last 30 days). For decedents with dementia, the highest costs were for the nursing home. Patients with dementia had the highest expenditures due to nursing home care. The number of dementia patients will double by the year 2030, resulting in even higher economic burdens than presently. Policy regarding patients with chronic conditions should be informed by research on expenditures within the context of preferences and needs of patients and carers.
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Le Low, Lisa Pau; Lam, Lai Wah; Fan, Kim Pong
2017-06-05
Caring and supporting older people with dementia have become a major public health priority. Recent reports have also revealed a diminishing number of family carers to provide dementia care in the future. Carers who are engaged in the caring role are known to bear significant psychological, practical and economic challenges as the disease advances over time. Seemingly, evidence indicates that the burden of care can be relieved by formal services. This study aims to explore decision-making experiences of family members of older adults with moderate dementia towards the use of community support (CS) and residential care home (RCH) services. A large multi-site constructivist grounded theory in a range of non-government organizations and a private aged home will frame this Hong Kong study. Purposive sampling will begin the recruitment of family members, followed by theoretical sampling. It is estimated that more than 100 family members using CS and RCH services will participate in an interview. The process of successive constant comparative analysis will be undertaken. The final product, a theory, will generate an integrated and comprehensive conceptual understanding which will explain the processes associated with decision-making of family members for dementia sufferers. Deeper understanding of issues including, but not exclusive to, service needs, expectations and hopes among family carers for improving service support to serve dementia sufferers in CS and RCH services will also be revealed. Importantly, this study seeks to illustrate the practical and strategic aspects of the theory and how it may be useful to transfer its applicability to various service settings to better support those who deliver formal and informal care to the dementia population.
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Prediction of Dementia in Primary Care Patients
Jessen, Frank; Wiese, Birgitt; Bickel, Horst; Eiffländer-Gorfer, Sandra; Fuchs, Angela; Kaduszkiewicz, Hanna; Köhler, Mirjam; Luck, Tobias; Mösch, Edelgard; Pentzek, Michael; Riedel-Heller, Steffi G.; Wagner, Michael; Weyerer, Siegfried; Maier, Wolfgang; van den Bussche, Hendrik
2011-01-01
Background Current approaches for AD prediction are based on biomarkers, which are however of restricted availability in primary care. AD prediction tools for primary care are therefore needed. We present a prediction score based on information that can be obtained in the primary care setting. Methodology/Principal Findings We performed a longitudinal cohort study in 3.055 non-demented individuals above 75 years recruited via primary care chart registries (Study on Aging, Cognition and Dementia, AgeCoDe). After the baseline investigation we performed three follow-up investigations at 18 months intervals with incident dementia as the primary outcome. The best set of predictors was extracted from the baseline variables in one randomly selected half of the sample. This set included age, subjective memory impairment, performance on delayed verbal recall and verbal fluency, on the Mini-Mental-State-Examination, and on an instrumental activities of daily living scale. These variables were aggregated to a prediction score, which achieved a prediction accuracy of 0.84 for AD. The score was applied to the second half of the sample (test cohort). Here, the prediction accuracy was 0.79. With a cut-off of at least 80% sensitivity in the first cohort, 79.6% sensitivity, 66.4% specificity, 14.7% positive predictive value (PPV) and 97.8% negative predictive value of (NPV) for AD were achieved in the test cohort. At a cut-off for a high risk population (5% of individuals with the highest risk score in the first cohort) the PPV for AD was 39.1% (52% for any dementia) in the test cohort. Conclusions The prediction score has useful prediction accuracy. It can define individuals (1) sensitively for low cost-low risk interventions, or (2) more specific and with increased PPV for measures of prevention with greater costs or risks. As it is independent of technical aids, it may be used within large scale prevention programs. PMID:21364746
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Canning, Shelley E; Gaetz, Michael; Blakeborough, Darren
2018-01-01
Individuals living in long-term residential care homes are often viewed through a negative lens. These residents have increasingly complex care needs, and their functional, communication and cognitive challenges can support conceptualizations of difference and disability perpetuating negative stereotypes of age and dementia. However, engaging in meaningful activities and relationships with older adults, including those with dementia, has been shown to promote positive attitudes. Specifically, intergenerational programming that provides opportunities for meaningful engagement between children and older adults has been shown to support positive emotional experiences through socializing and building relationships. This qualitative study explored the development of relationships between school-aged children and older adults with dementia living in a long-term residential care home. Residents in long-term care homes and children typically have limited opportunities to interact with each other; in this study, participating in an intergenerational dance programme provided an opportunity for meaningful relationships to develop. This paper focuses on the development of the children's attitudes and understandings of their much older dance partners. Seven girls between the ages of seven and nine participated in ballet classes with residents in a long-term care home for one hour each week over a six-month period. All of the residents had a diagnosis of moderate to advanced dementia. Further, all of the residents also had other chronic health issues such as cardiac, respiratory and/or neurological diseases. The children were interviewed at the baseline, three- and six-month intervals. Prior to beginning the dance programme, the children anticipated their dance partners to be unwell and unable. However, by the end of six months, the children described the residents much more positively highlighting their abilities and strengths. Over time, through participating in a structured intergenerational programme, the children's views of disability and difference disappeared as they formed dance partnerships and developed meaningful relationships.
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Prediction of dementia in primary care patients.
Jessen, Frank; Wiese, Birgitt; Bickel, Horst; Eiffländer-Gorfer, Sandra; Fuchs, Angela; Kaduszkiewicz, Hanna; Köhler, Mirjam; Luck, Tobias; Mösch, Edelgard; Pentzek, Michael; Riedel-Heller, Steffi G; Wagner, Michael; Weyerer, Siegfried; Maier, Wolfgang; van den Bussche, Hendrik
2011-02-18
Current approaches for AD prediction are based on biomarkers, which are however of restricted availability in primary care. AD prediction tools for primary care are therefore needed. We present a prediction score based on information that can be obtained in the primary care setting. We performed a longitudinal cohort study in 3.055 non-demented individuals above 75 years recruited via primary care chart registries (Study on Aging, Cognition and Dementia, AgeCoDe). After the baseline investigation we performed three follow-up investigations at 18 months intervals with incident dementia as the primary outcome. The best set of predictors was extracted from the baseline variables in one randomly selected half of the sample. This set included age, subjective memory impairment, performance on delayed verbal recall and verbal fluency, on the Mini-Mental-State-Examination, and on an instrumental activities of daily living scale. These variables were aggregated to a prediction score, which achieved a prediction accuracy of 0.84 for AD. The score was applied to the second half of the sample (test cohort). Here, the prediction accuracy was 0.79. With a cut-off of at least 80% sensitivity in the first cohort, 79.6% sensitivity, 66.4% specificity, 14.7% positive predictive value (PPV) and 97.8% negative predictive value of (NPV) for AD were achieved in the test cohort. At a cut-off for a high risk population (5% of individuals with the highest risk score in the first cohort) the PPV for AD was 39.1% (52% for any dementia) in the test cohort. The prediction score has useful prediction accuracy. It can define individuals (1) sensitively for low cost-low risk interventions, or (2) more specific and with increased PPV for measures of prevention with greater costs or risks. As it is independent of technical aids, it may be used within large scale prevention programs.
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Creative writing and dementia care: 'making it real'.
Bailey, Catherine; Jones, Romi; Tiplady, Sue; Quinn, Isabel; Wilcockson, Jane; Clarke, Amanda
2016-12-01
Health professionals continue to seek ways to promote positive communication and self-worth when supporting people living with dementia. The value of creative writing techniques as part of reflective practice in nursing and caring for older people with dementia needs further exploration. To introduce creative writing techniques to health professionals as part of dementia-related reflective practice. A local experienced author facilitated creative writing workshops with nine preregistration nursing students (general and mental health), one family carer and five care professionals working with people with dementia. The student nurses reported that the creative writing exercises felt more 'real' than the reflective practice models they had used in their academic and practical studies. Workshop participants also reported they had learnt some creative writing techniques to reduce work-related stress and anxiety. They also saw the impact of writing activities with people living with dementia, which can enable creativity and 'alleviate the common symptoms of depression and anxiety'. Creative writing techniques can support insightful, reflective dementia focused practice. Creative writing, as a tool in reflective practice, may enable health professionals and family carers to become confident and creative partners in older people's care. The added value, time and investment needed to introduce creative writing need to be articulated and acknowledged from within supervision and staffing teams. © 2016 John Wiley & Sons Ltd.
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Lord, Kathryn; Livingston, Gill; Robertson, Sarah; Cooper, Claudia
2016-03-21
People with dementia and their relatives find decisions about the person with dementia living in a care home difficult. We interviewed 20 people with dementia or family carers around the time of this decision in order to design a decision-aid. Decision-makers balanced the competing priorities of remaining somewhere familiar, family's wish they remain at home, reduction of risk and effects on carer's and person with dementia's physical health. The person with dementia frequently resented their lack of autonomy as decisions about care home moves were made after insight and judgment were impaired. Family consultation usually helped carers but sometimes exacerbated tensions. Direct professional support was appreciated where it was available. There is a need for healthcare professionals to facilitate these conversations around decision-making and to include more than signposting to other organisations. There is a need for a healthcare professional facilitated decision-aid. This should detail what might change for the person with dementia and their carer, possible resources and alternatives and assist in facilitating discussion with the wider family; further research will develop and test a tool to facilitate decision making about place of care needs.
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Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork
2017-01-01
In addition to care-related burdens, most caregivers of a person with dementia perceive a variety of positive and satisfying experiences, such as feeling needed and useful in their family caregiving role. "Meaning-focused coping" describes both positive and negative emotions in periods with high levels of stress. Day care service may have the potential to increase caregivers' positive experiences and meaning-focused coping, and positively influence interpersonal relationships between those giving care and those receiving care. The aim of this study was to gain knowledge about family caregivers' experiences of meaning in their caring role. Additionally, the influence of day care services on caregivers' experiences and motivation in their caregiving role is explored. A qualitative design based on individual interviews was used. The interviews were analyzed using a narrative method and a case study approach. Family caregivers' roles and coping strategies were related to their relational ties. Caregivers had to make decisions about whether to enhance, maintain, or let go of emotional ties to find a good balance between meeting their own needs and the needs of the person with dementia. Family caregivers reported that day care positively influenced their "relationship-oriented coping" and experience of meaning. Finding meaning in the role of a family caregiver for persons with dementia is closely connected to the caregivers' own values and goals. Finding a balance between attending to their own needs and the needs of the person with dementia is crucial. Day care has the potential to increase family caregivers' motivation to care by supporting their capacity to meet their own needs, cooperate and communicate with the person with dementia, and make competent and autonomous choices, thus increasing their feeling of mastery.
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Development of a Daily Life Support System for Elderly Persons with Dementia in the Care Facility.
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.
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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.