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  1. Counsellors contact dementia caregivers - predictors of utilisation in a longitudinal study

    PubMed Central

    2010-01-01

    Background Counselling of family members is an established procedure in the support of dementia patients' relatives. In absence of widespread specialised dementia care services in most countries, however, counselling services are often not taken up or only very late in the course of the disease. Object In order to promote acceptance of this service, a new counselling concept was implemented where general practitioners recommended family counsellors, who then actively contacted the family caregivers to offer counselling ("Counsellors Contact Caregivers", CCC). The research questions were: To what extent can the rate of family counselling be increased by CCC? What are the predictors for usage of this form of family counselling? Methods The study started in June 2006 in Middle Franconia for patients with mild to moderate dementia. At baseline, 110 family caregivers were offered counselling based on the CCC guideline. Data was analysed from 97 patient-caregiver dyads who received counselling for one year. The mean age of the patients with dementia (67 women and 30 men) was 80.7 years (SD = 6.2). The mean age of their primary family caregivers (68 women, 23 men) was 60.8 years (SD = 13.8). Results 35 family members (36%) made use of more extensive counselling (more than one personal contact). By contrast, 29 family members (30%) had no personal contact or only one personal contact (33 cases, 34%). The factors "spouse" (p = .001) and "degree of care" (p = .005) were identified as significant predictors for acceptance of extensive counselling. Conclusions Actively contacting patients and their caregivers is a successful means of establishing early and frequent contact with family members of patients with mild to moderate dementia. Use of extensive counselling is made especially by spouses of patients requiring intensified care. Trial Registration ISRCTN68329593 PMID:20470365

  2. Effects of positive cognitions and resourcefulness on caregiver burden among caregivers of persons with dementia.

    PubMed

    Bekhet, Abir K

    2013-08-01

    Currently, 5.4 million persons in the USA are diagnosed with dementia, and this number is projected to rise to 7.7 million by the year 2030. Family caregivers provide up to 80% of the care needed by persons with dementia and published work suggests that caring for persons with dementia can be very costly to caregivers' health. This study examined the mediating and the moderating effects of positive cognitions on the relationship between caregiver burden and resourcefulness in 80 caregivers of persons with dementia. A descriptive, correlational, and cross-sectional design was used in this study. The researcher contacted the administrators at the Alzheimer's Association early stage programs in Southeastern Wisconsin and questionnaires were distributed to interested caregivers. Positive cognitions explained 31% of the variance in resourcefulness (F (1, 78) = 35.46, P < 0.001) and as positive cognitions increased, caregivers' resourcefulness increased. Positive cognitions were found to be a mediator as evidenced by a substantial drop in the beta weight of caregiver burden from B = -0.28 to B = -0.11 when positive cognitions were entered into the equation. Interventions to strengthen positive thinking among caregivers of persons with dementia are needed to help caregivers overcome their burden.

  3. Coping strategies and caregiving outcomes among rural dementia caregivers.

    PubMed

    Sun, Fei; Kosberg, Jordan I; Kaufman, Allan V; Leeper, James D

    2010-08-01

    We studied the coping styles by which family caregivers living in rural areas of Alabama deal with the demands of caring for an older relative with dementia. Data were obtained from a sample of 141 caregivers through the random-digit dialing telephone survey. Two coping styles were identified: deliberate coping and avoidance coping. Deliberate coping was related to higher life satisfaction scores and, avoidance coping was related to lower life satisfaction scores and higher caregiver burden scores. Avoidance coping appeared to moderate the effects of caregiver health on caregiver burden. Social workers should pay greater attention to caregivers with dysfunctional coping styles.

  4. Family caregivers of people with dementia

    PubMed Central

    Brodaty, Henry; Donkin, Marika

    2009-01-01

    Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated. PMID:19585957

  5. Resourcefulness Training for Dementia Caregivers: Establishing Fidelity

    PubMed Central

    Zauszniewski, Jaclene A.; Lekhak, Nirmala; Burant, Christopher J.; Underwood, Patricia W.; Morris, Diana L.

    2016-01-01

    Providing care for an elder with dementia can produce extreme stress that adversely affects caregiver health. Learning to be resourceful, which involves practicing resourcefulness skills using a journal or voice recorder, may reduce caregiver stress. However, before testing the effectiveness of journaling and voice recording as resourcefulness training (RT) practice methods, intervention fidelity should first be established. This pilot trial with 63 women dementia caregivers examined the fidelity of journaling and voice recording and whether allowing a choice between the methods affected RT intervention fidelity. Following RT, Resourcefulness Scale scores were similar for journal and recorder methods but higher for caregivers in the choice versus random condition. Patterns of RT skill use documented in journals or recordings were similar for choice and random conditions and for journal and recorder methods. The results support the implementation fidelity of RT that allows caregivers to choose a method to reinforce their resourcefulness skills. PMID:27338751

  6. Dementia: The Experience of Family Caregivers.

    ERIC Educational Resources Information Center

    Chenoweth, Barbara; Spencer, Beth

    1986-01-01

    Caregivers of family members with dementia of the Alzheimer's type were surveyed for their experiences with early symptoms, obtaining a diagnosis, home care, and institutionalization. At each stage in the process of providing care there are new and different stresses that can be ameliorated by appropriate professional assistance. (Author)

  7. Dementia, Caregiving, and Controlling Frustration

    MedlinePlus

    ... calling a friend, praying, meditating, singing, listening to music or taking a bath. Try experimenting with different ... direct support services for caregivers of those with Alzheimer's disease, stroke, traumatic brain injury, Parkinson's and other ...

  8. LEWY BODY DEMENTIA: THE CAREGIVER EXPERIENCE OF CLINICAL CARE

    PubMed Central

    Galvin, James E.; Duda, John E.; Kaufer, Daniel I.; Lippa, Carol F.; Taylor, Angela; Zarit, Steven H.

    2010-01-01

    BACKGROUND Lewy body dementia (LBD) is the second most common cause of dementia, however, little is known about how the clinical diagnosis of LBD is obtained in the community or the caregiver experience while seeking the diagnosis. METHODS The Lewy Body Dementia Association (www.LBDA.org) conducted a web-based survey of 962 caregivers over a 6-month period. RESULTS The mean age of respondents was 55.9y; 88% were female and 64% had daily contact with patients. The mean age of LBD patients was 75.4y; 62% were male and 46% lived with a caregiver. The most common presentation of symptoms as reported by LBD caregivers was cognitive (48%), motor (39%) or both (13%). The first diagnoses given to the patients were Parkinson disease or other movement disorder (39%), Alzheimer disease or other cognitive disorder (36%), or mental illness (24%). Fifty percent of patients saw >3 doctors for more than 10 visits over the course of 1 year before an LBD diagnosis was established. Neurologists diagnosed most cases (62%), while primary care-providers diagnosed only 6% of cases. No differences were found between the presentation of disease and the number of physicians, number of office visits, length of time to establish diagnosis, or type of doctor who finally made an LBD diagnosis. Caregivers viewed physicians as knowledgeable about disease manifestations and treatment options, but not about disease course/prognosis and available community resources and referrals. CONCLUSIONS These data highlight a need for increasing physician awareness and knowledge of LBD, which will facilitate accurate diagnosis and treatment. Community resources such as the Lewy Body Dementia Association may serve this end, while also providing practical information and support for caregivers. PMID:20434939

  9. Typical and Atypical Dementia Family Caregivers: Systematic and Objective Comparisons

    ERIC Educational Resources Information Center

    Nichols, Linda O.; Martindale-Adams, Jennifer; Burns, Robert; Graney, Marshall J.; Zuber, Jeffrey

    2011-01-01

    This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1,476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II)…

  10. Financial Difficulty Effects on Depressive Symptoms Among Dementia Patient Caregivers.

    PubMed

    Nam, Ilsung

    2016-11-01

    The financial difficulty of dementia caregivers and its effects on mental health has gained increasing attention from researchers. The present study examines the longitudinal relationship between financial difficulty and the depressive symptoms of dementia caregivers using matching methods to account for potential selection bias. Propensity score matching methods and mixed-effects models were used to determine the effects of financial difficulty on depressive symptoms among caregivers participating in the Resources for Enhancing Alzheimer's Caregiver Health (REACH) intervention program. Propensity score matching confirmed that caregivers experiencing financial difficulty were more likely to have depressive symptoms. The results suggest that dementia caregivers require support for their financial difficulty. Future research should fully examine the complex relationship between financial difficulty and the mental health of caregivers and how this issue can be addressed through assessment and intervention methods.

  11. Persons with Dementia and Their Caregivers Using GPS.

    PubMed

    Øderud, Tone; Landmark, Bjørg; Eriksen, Sissel; Fossberg, Anne Berit; Aketun, Sigrid; Omland, May; Hem, Karl-Gerhard; Østensen, Elisabeth; Ausen, Dag

    2015-01-01

    The aim of the study is to generate knowledge on the use of Global Positioning Systems (GPS) to support autonomy and independence for persons with dementia. By studying a larger cohort of persons with dementia (n=208) and their caregivers, this study provides essential knowledge for planning and implementing GPS technology as a part of public health care services. Commercially available GPS technology was provided to the cohort of 208 persons with dementia from nineteen different Norwegian municipalities. The participants used GPS when performing outdoor activities as part of their daily life during a period of time between 2012 and 2014. Their family caregivers were instructed on how to use the GPS technology for locating the participants. The study documents that using GPS for locating persons with dementia provide increased safety for the person with dementia, their family caregivers and their professional caregivers. Furthermore the results confirm that by using GPS, persons with dementia may maintain their autonomy, enjoy their freedom and continue their outdoor activities despite the progression of the disease. Preconditions for successful implementation are that health professionals are trained to assess the participant's needs, that ethical dilemmas are considered, that caregivers have adequate knowledge about using the technology and that procedures and routines for administrating the GPS and locating persons with dementia are established. Early intervention and close collaboration between persons with dementia, family caregivers and professional caregivers are important for successful implementation of GPS in public health care.

  12. LEWY BODY DEMENTIA: CAREGIVER BURDEN AND UNMET NEEDS

    PubMed Central

    Galvin, James E.; Duda, John E.; Kaufer, Daniel I.; Lippa, Carol F.; Taylor, Angela; Zarit, Steven H.

    2010-01-01

    Lewy body dementia (LBD) is a common cause of dementia but to date, little is known about caregiver burden. The Lewy Body Dementia Association (www.LBDA.org) conducted a web-based survey of 962 caregivers (mean age 56y; 88% women). The most common initial symptoms were cognitive (48%), motor (39%), or both (13%). Caregivers expressed concerns about fear of future (77%), feeling stressed (54%), loss of social life (52%) and uncertainty about what to do next (50%). Caregivers reported moderate to severe burden; 80% felt the people around them did not understand their burden and 54% reported feelings of isolation with spousal caregivers reporting more burden than non-spousal caregivers. Only 29% hired in-home assistance while less than 40% used respite or adult day care, geriatric case managers or attended a support group meeting. Lack of service utilization occurred despite two-thirds of caregivers reporting medical crises requiring emergency services, psychiatric care or law enforcement. Caregivers reported preferences for web-based information, directories of LBD expert providers, information on LBD research and location of local support groups. These findings highlight significant unmet needs for LBD caregivers and provide targets for intervention to reduce caregiver burden. Community resources such as the Lewy Body Dementia Association may serve this end, while also providing practical information and support for caregivers. PMID:20505434

  13. The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease.

    PubMed

    Mioshi, Eneida; Foxe, David; Leslie, Felicity; Savage, Sharon; Hsieh, Sharpley; Miller, Laurie; Hodges, John R; Piguet, Olivier

    2013-01-01

    Caregiver burden is greater in frontotemporal dementia (FTD) than in Alzheimer disease (AD). However, little is known of the impact of the 3 main clinical variants of FTD- behavioral-variant frontotemporal dementia (bvFTD), semantic dementia (SemDem), and progressive nonfluent aphasia (PNFA)-or the role of disease severity in caregiver burden. The Zarit Burden Inventory was used to measure caregiver burden of bvFTD (n=17), SemDem (n=20), PNFA (n=20), and AD (n=19) patients. Symptom duration, caregiver age, and relationship type were matched across groups. Moreover, a number of caregiver (mood, social network) and patient variables (functional disability, behavioral changes, relationship with caregiver, and dementia stage) were addressed to investigate their impact on caregiver burden. Caregivers of bvFTD patients reported the highest burden, whereas SemDem and PNFA caregivers reported burden similar to AD. A regression analysis revealed that caregiver burden in FTD, regardless of subtype, was explained by a model combining disease staging, relationship changes, and caregiver depression. Burden increased with disease severity in FTD. This study is the first to show that caregivers of SemDem, PNFA, and AD patients show similar burden, while confirming that bvFTD caregivers show higher burden than AD caregivers. More importantly, this study demonstrates that burden worsens with disease progression in FTD.

  14. Family-based therapy for dementia caregivers: clinical observations

    PubMed Central

    MITRANI, V. B.; CZAJA, S. J.

    2008-01-01

    Family caregiving for dementia patients is a major social and clinical problem. Family caregivers face major stressful emotional, social and economic burdens, and the negative consequences associated with caregiving are well documented. Given the projected increase in the number of people with dementia, there is a need to identify approaches that will help families manage the challenges of caregiving. Social support from friends and family members has consistently been found to mediate caregiver outcomes, yet many caregivers face problems with isolation and estrangement from family members. In this regard, family-based therapy is a promising intervention for increasing social support for caregivers, and enhancing their quality of life and ability to provide care.This paper will discuss how family-based therapy can be applied as an intervention for family caregivers of dementia patients.The clinical implications of specific interactional patterns will be presented via case examples from an ongoing clinical trial with white American and Cuban American caregivers of dementia patients.The intent is to demonstrate how identification of interactional patterns is a valuable tool for implementing family-based interventions. PMID:18548132

  15. Problem-Solving Strategies in Dementia Patient-Caregiver Dyads.

    ERIC Educational Resources Information Center

    Cavanaugh, John C.; And Others

    1989-01-01

    Examined applicability of scaffolding and zone of proximal development to the study of dementia. Compared caregiver-patient dyads (n=29) to normal elderly dyads (n=16) in terms of strategies used in completing the Block Design subtest of the Wechsler Adult Intelligence Scale-Revised. Results indicated that caregiver-patient dyads can be observed…

  16. Christianity and Resilience as Experienced by Caregivers of Dementia Patients

    ERIC Educational Resources Information Center

    Lackey, Steven L.

    2014-01-01

    The purpose of this study was to examine the role and relationship of the practice of Christian beliefs and resilience in the context of dementia patient caregivers' lives. The guiding question was "What is the relational nature of the practice of Christian beliefs and resilience in the lived experiences of caregivers of dementia…

  17. Long-Term Adaptation to Institutionalization in Dementia Caregivers

    ERIC Educational Resources Information Center

    Gaugler, Joseph E.; Pot, Anne Margriet; Zarit, Steven H.

    2007-01-01

    Purpose: Longitudinal research in dementia has acknowledged the importance of transitions during the course of family caregiving. However, long-term adaptation to institutionalization has received little attention. This study attempts to describe caregivers' adaptation (changes in stress, well-being, and psychosocial resources) to placement up to…

  18. Caregiving and Adults with Intellectual Disabilities Affected by Dementia

    ERIC Educational Resources Information Center

    Courtenay, Ken; Jokinen, Nancy S.; Strydom, Andre

    2010-01-01

    Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997-2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level…

  19. Caregiving for Dementia in Asian Communities: Implications for Practice

    ERIC Educational Resources Information Center

    Wang, Donna S.

    2012-01-01

    Dementia can be debilitating not only for the older adult suffering from memory loss and confusion, but for family members as well. Understanding caregiving for ethnic minorities is critical. In Asian communities, addressing dementia and other mental health issues can be compounded by cultural factors such as perceptions of mental health and…

  20. Development of older men's caregiving roles for wives with dementia.

    PubMed

    Hellström, Ingrid; Håkanson, Cecilia; Eriksson, Henrik; Sandberg, Jonas

    2017-01-25

    This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5- to 6-year period. The findings comprise three themes; me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices.

  1. The Impact of Living Arrangements on Dementia Caregivers' Sleep Quality.

    PubMed

    Simpson, Cherie; Carter, Patricia

    2015-06-01

    In the United States half of the 15 million informal caregivers of persons with Alzheimer's disease or a related dementia (PWDs) do not live with the PWD. This paper compares the sleep quality and health of 59 community-dwelling caregivers living with the PWD and 21 living apart from the PWD. Variables of interest were caregiving experience (hours caregiving, problematic behaviors of the PWD, caregivers' perception of dementia severity), sleep quality, and health (perceived health, stress, and depressive symptoms). Parametric unpaired t tests were used to calculate the differences between key variables. Multiple regression models were constructed, controlling for age, gender, behavior index, and dementia severity to examine the variance explained by living arrangements on sleep quality and health. Caregivers living apart from the PWD experienced the same level of poor sleep quality as did caregivers living with the PWD. The living arrangements of the caregiver did not make a unique contribution to sleep quality or health variables except for reports of unhealthy days. Given the importance of good quality sleep for health, the findings highlight the importance of evaluating caregivers living apart from the PWD for sleep problems with the same level of concern as one would have for those living with the PWD.

  2. Pain in Hospice Patients With Dementia: The Informal Caregiver Experience

    PubMed Central

    Tarter, Robin; Demiris, George; Pike, Kenneth; Washington, Karla; Oliver, Debra Parker

    2016-01-01

    Introduction At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management. This study describes their experience managing pain in hospice patients with dementia. Methods We conducted a qualitative analysis of audio-recorded interviews with informal caregivers of hospice patients with dementia who had chosen pain as the challenge they wanted to work on within a problem-solving therapy intervention. Results The thematic analysis of sessions with 51 caregivers identified 4 themes: difficulty in communicating with patients, lack of consistent guidance from health-care professionals, perceived uncertainty about the etiology of pain, and secondary suffering. Discussion Our findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals. PMID:27303062

  3. Lewy body dementia: the impact on patients and caregivers.

    PubMed

    Zweig, Yael R; Galvin, James E

    2014-01-01

    Lewy body dementia (LBD) is the second most common neurodegenerative dementia in older adults, yet there remains a delay in diagnosis that limits healthcare providers' ability to maximize therapeutic outcomes and enhance patient and caregiver quality of life. The impact of LBD on patients includes limiting the potential exposure to medications that may cause adverse outcomes, and addressing how the disease manifestations, such as autonomic features and behavior, affect quality of life. LBD impact on caregivers has been discussed to a greater degree in the literature, and there is clear evidence of caregiver burden and grief associated with disease manifestations. Other common caregiving concerns, such as access to care, prevention of hospitalization, managing behavior, and reviewing prognosis and nursing home placement, are important to comprehensively address the needs of patients with LBD and their caregivers.

  4. Caregivers' resilience is independent from the clinical symptoms of dementia.

    PubMed

    Dias, Rachel; Simões-Neto, José Pedro; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Baptista, Maria Alice Tourinho; Lacerda, Isabel Barbeito; Kimura, Nathalia Ramos Santos; Dourado, Marcia Cristina Nascimento

    2016-12-01

    Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers' resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver's gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver's quality of life (p < 0.01) and inversely associated with their depressive symptoms (p < 0.01). There was no relationship between caregivers' resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.

  5. The Impact of Anticipatory Grief on Caregiver Burden in Dementia Caregivers

    ERIC Educational Resources Information Center

    Holley, Caitlin K.; Mast, Benjamin T.

    2009-01-01

    Purpose: Interest in anticipatory grief (AG) has typically focused on terminal diseases such as cancer. However, the issues involved in AG are unique in the context of dementia due to the progressive deterioration of both cognitive and physical abilities. The current study investigated the nature of AG in a sample of dementia caregivers and…

  6. Predictors of Dementia Caregiver Depressive Symptoms in a Population: The Cache County Dementia Progression Study

    PubMed Central

    2013-01-01

    Objectives. Previous research has consistently reported elevated rates of depressive symptoms in dementia caregivers, but mostly with convenience samples. This study examined rates and correlates of depression at the baseline visit of a population sample of dementia caregivers (N = 256). Method. Using a modified version of Williams (Williams, I. C. [2005]. Emotional health of black and white dementia caregivers: A contextual examination. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 60, P287–P295) ecological contextual model, we examined 5 contexts that have contributed to dementia caregiver depression. A series of linear regressions were performed to determine correlates of depression. Results. Rates of depressive symptoms were lower than those reported in most convenience studies. We found fewer depressive symptoms in caregivers with higher levels of education and larger social support networks, fewer health problems, greater likelihood of using problem-focused coping, and less likelihood of wishful thinking and with fewer behavioral disturbances in the persons with dementia. Discussion. These results suggest that depression may be less prevalent in populations of dementia caregivers than in clinic-based samples, but that the correlates of depression are similar for both population and convenience samples. Interventions targeting individuals with small support networks, emotion-focused coping styles, poorer health, low quality of life, and those caring for persons with higher numbers of behavioral problems need development and testing. PMID:23241850

  7. Wearable Technology to Garner the Perspective of Dementia Family Caregivers.

    PubMed

    Matthews, Judith T; Campbell, Grace B; Hunsaker, Amanda E; Klinger, Julie; Mecca, Laurel Person; Hu, Lu; Hostein, Sally; Lingler, Jennifer H

    2016-04-01

    Family caregivers of individuals with dementia typically have limited opportunity during brief clinical encounters to describe the dementia-related behaviors and interactions they find difficult to handle. Lack of objective data depicting the nature, intensity, and impact of these manifestations of the underlying disease further constrains the extent to which strategies recommended by nurses or other health care providers can be tailored to the situation. The current article describes a prototype wearable camera system used to gather image and voice data from the caregiver's perspective in a pilot feasibility intervention study conducted with 18 caregiving dyads. Several scenarios are presented that include salient events (i.e., behaviors or interactions deemed difficult by the caregiver or identified as concerning by the research team during screening) captured in the resulting video. The current authors anticipate future wearable camera systems and software will automate screening for salient events, providing new tools for assessment and intervention by nurses.

  8. Feasibility of Central Meditation and Imagery Therapy for Dementia Caregivers

    PubMed Central

    Jain, Felipe A.; Nazarian, Nora; Lavretsky, Helen

    2014-01-01

    Objectives Family dementia caregivers are at high risk of depression and burnout. We aimed to assess the feasibility of Central Meditation and Imagery Therapy for Caregivers (CMIT-C), a novel 8-week group meditation and guided imagery group therapy program, for dementia caregivers reporting stress due to caregiving responsibilities. Methods 12 family dementia caregivers enrolled in CMIT-C. Primary outcomes included depression and anxiety, and secondary included insomnia, quality of life, and mindfulness. Changes over the study and three month follow-up were analyzed with non-parametric related samples tests. Correlations of feeling state changes from meditation diaries at 1 week were made with symptom changes post meditation training. Results 10 participants completed the study. Completers came to an average of 7 ± 1 sessions out of a possible 8, and turned in home practice logs 90 ± 10% of the time. Anxiety, depression and insomnia symptoms decreased, and mindfulness ratings improved with large effects (all p < 0.05 and Cohen's d ≥ 0.7). Gains were stable at 3 months. Early response during the first week of meditation practice was associated with subsequent home meditation practice, anxiety change at eight weeks, and endpoint satisfaction with CMIT-C. Conclusions CMIT-C is a feasible intervention for dementia caregivers. Results suggest that this therapeutic technique can reduce symptoms of anxiety, depression, and insomnia, and increase levels of mindfulness. Early response to meditation practice predicted those with the greatest short-term benefits, and this may inform future studies of meditation. Larger, controlled efficacy studies of CMIT-C for dementia caregivers are warranted. PMID:24477920

  9. Family Dynamics and Personal Strengths among Dementia Caregivers in Argentina.

    PubMed

    Elnasseh, Aaliah G; Trujillo, Michael A; Peralta, Silvina Victoria; Stolfi, Miriam E; Morelli, Eliana; Perrin, Paul B; Arango-Lasprilla, Juan Carlos

    2016-01-01

    This study examined whether healthier family dynamics were associated with higher personal strengths of resilience, sense of coherence, and optimism among dementia caregivers in Argentina. Caregivers are usually required to assist individuals with dementia, and family members have typically fulfilled that role. Personal strengths such as resilience, sense of coherence, and optimism have been shown to protect caregivers from some of the negative experiences of providing care, though the family-related variables associated with these personal strengths are largely unknown. Hierarchical multiple regressions investigated the extent to which family dynamics variables are associated with each of the caregiver personal strengths after controlling for demographic and caregiver characteristics. A sample of 105 caregivers from Argentina completed a set of questionnaires during a neurologist visit. Family dynamics explained 32% of the variance in resilience and 39% of the variance in sense of coherence. Greater family empathy and decreased family problems were uniquely associated with higher resilience. Greater communication and decreased family problems were uniquely associated with higher sense of coherence. Optimism was not found to be significantly associated with family dynamics. These results suggest that caregiver intervention research focused on the family may help improve caregiver personal strengths in Argentina and other Latin American countries.

  10. Family Dynamics and Personal Strengths among Dementia Caregivers in Argentina

    PubMed Central

    Elnasseh, Aaliah G.; Trujillo, Michael A.; Peralta, Silvina Victoria; Stolfi, Miriam E.; Morelli, Eliana; Perrin, Paul B.

    2016-01-01

    This study examined whether healthier family dynamics were associated with higher personal strengths of resilience, sense of coherence, and optimism among dementia caregivers in Argentina. Caregivers are usually required to assist individuals with dementia, and family members have typically fulfilled that role. Personal strengths such as resilience, sense of coherence, and optimism have been shown to protect caregivers from some of the negative experiences of providing care, though the family-related variables associated with these personal strengths are largely unknown. Hierarchical multiple regressions investigated the extent to which family dynamics variables are associated with each of the caregiver personal strengths after controlling for demographic and caregiver characteristics. A sample of 105 caregivers from Argentina completed a set of questionnaires during a neurologist visit. Family dynamics explained 32% of the variance in resilience and 39% of the variance in sense of coherence. Greater family empathy and decreased family problems were uniquely associated with higher resilience. Greater communication and decreased family problems were uniquely associated with higher sense of coherence. Optimism was not found to be significantly associated with family dynamics. These results suggest that caregiver intervention research focused on the family may help improve caregiver personal strengths in Argentina and other Latin American countries. PMID:27413574

  11. Partners in Dementia Care: A Care Coordination Intervention for Individuals with Dementia and Their Family Caregivers

    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…

  12. Use of psychotropic medications by caregivers of elderly patients with dementia: is this a sign of caregiver burden?

    PubMed

    Camargos, Einstein Francisco; Souza, Andrea Brígida; Nascimento, Aline Silva; Morais-E-Silva, Alessandra Cicari; Quintas, Juliana Lima; Louzada, Luciana Lilian; Medeiros-Souza, Patricia

    2012-03-01

    This study evaluated the consumption of psychotropic medications by caregivers of elderly patients with or without dementia. This was a cross-sectional study conducted at all geriatric units in Brasília, Brazil, during a two-month period. Structured interviews were performed with 311 caregivers of people with or without dementia and they completed questionnaires. Among the caregivers, 196 (63%) were caregivers of patients with dementia and 115 (37%) were caregivers of patients without dementia. Forty-four caregivers (14.1%) were taking psychotropic drugs (benzodiazepines or antidepressants), and this usage was more frequent among caregivers of patients with dementia (p<0.01). Twenty-two caregivers of patients with dementia (11.4%) had used sleeping pills after beginning care, compared with only five (4.3%) caregivers of patients without dementia (p<0.01). In conclusion, this study found that caregivers of patients with dementia took psychotropic drugs (benzodiazepines and antidepressants) more frequently than the ones of patients without dementia.

  13. Caregiver- and Patient-Directed Interventions for Dementia

    PubMed Central

    2008-01-01

    Executive Summary In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy. After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report. Please visit the Medical Advisory Secretariat Web site, http://www.health.gov.on.ca/english/providers/program/mas/mas_about.html, to review these titles within the Aging in the Community series. Aging in the Community: Summary of Evidence-Based Analyses Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR) This report features the evidence-based analysis on caregiver- and patient-directed interventions for dementia and is broken down into 4 sections: Introduction Caregiver-Directed Interventions for Dementia Patient-Directed Interventions for Dementia Economic Analysis of Caregiver- and Patient-Directed Interventions for Dementia Caregiver-Directed Interventions for Dementia

  14. Group Intervention for Dementia Family Caregivers: A Longitudinal Perspective.

    ERIC Educational Resources Information Center

    Haley, William E.

    1989-01-01

    Conducted longitudinal follow-up to previously published experimental study of effectiveness of group intervention for dementia family caregivers. Found methodological and clinical issues relevant to future studies included issues of differential attrition from treatment, selection of participants,and need for measures appropriate to long-term…

  15. Wearable Technology to Garner the Perspective of Dementia Family Caregivers

    PubMed Central

    Matthews, Judith T.; Campbell, Grace B.; Hunsaker, Amanda E.; Klinger, Julie; Mecca, Laurel Person; Hu, Lu; Hostein, Sally; Lingler, Jennifer H.

    2015-01-01

    Family caregivers of persons with dementia typically have limited opportunity during brief clinical encounters to describe the dementia-related behaviors and interactions that they find difficult to handle. Lack of objective data depicting the nature, intensity, and impact of these manifestations of the underlying disease further constrains the extent to which strategies recommended by nurses or other health care providers can be tailored to the situation. We describe a prototype wearable camera system used to gather image and voice data from the caregiver’s perspective in a pilot feasibility intervention study conducted with 18 caregiving dyads. Several scenarios are presented that incorporate salient events (i.e., behaviors or interactions deemed difficult by the caregiver or identified as concerning by our team during screening) identified in the resulting video. We anticipate that future wearable camera systems and software will automate screening for salient events, providing new tools for assessment and intervention by nurses. PMID:26468655

  16. Dementia Caregiver Intervention Research: In Search of Clinical Significance

    PubMed Central

    Schulz, Richard; O’Brien, Alison; Czaja, Sara; Ory, Marcia; Norris, Rachel; Martire, Lynn M.; Belle, Steven H.; Burgio, Lou; Gitlin, Laura; Coon, David; Burns, Robert; Gallagher-Thompson, Dolores; Stevens, Alan

    2008-01-01

    Purpose We reviewed intervention studies that reported dementia caregiver outcomes published since 1996, including psychosocial interventions for caregivers and environmental and pharmacological interventions for care recipients. Our goal was to focus on issues of clinical significance in caregiver intervention research in order to move the field toward a greater emphasis on achieving reliable and clinically meaningful outcomes. Design and Methods MEDLINE, PsycINFO, and Cumulative Index to Nursing & Allied Health databases from 1996 through 2001 were searched to identify articles and book chapters mapping to two medical subject headings: caregivers and either dementia or Alzheimer’s disease. Articles were evaluated on two dimensions, outcomes in four domains thought to be important to the individual or society and the magnitude of reported effects for these outcomes in order to determine if they were large enough to be clinically meaningful. Results Although many studies have reported small to moderate statistically significant effects on a broad range of outcomes, only a small proportion of these studies achieved clinically meaningful outcomes. Nevertheless, caregiving intervention studies have increasingly shown promise of affecting important public health outcomes in areas such as service utilization, including delayed institutionalization; psychiatric symptomatology, including the successful treatment of major and minor depression; and providing services that are highly valued by caregivers. Implications Assessment of clinical significance in addition to statistical significance is needed in this research area. Specific recommendations on design, measurement, and conceptual issues are made to enhance the clinical significance of future research. PMID:12351794

  17. Factors Underpinning Caregiver Burden in Frontotemporal Dementia Differ in Spouses and their Children.

    PubMed

    Kaizik, Cassandra; Caga, Jashelle; Camino, Julieta; O'Connor, Claire M; McKinnon, Colleen; Oyebode, Jan R; Piguet, Olivier; Hodges, John R; Mioshi, Eneida

    2017-01-01

    The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences.

  18. Factors Underpinning Caregiver Burden in Frontotemporal Dementia Differ in Spouses and their Children

    PubMed Central

    Kaizik, Cassandra; Caga, Jashelle; Camino, Julieta; O’Connor, Claire M.; McKinnon, Colleen; Oyebode, Jan R.; Piguet, Olivier; Hodges, John R.; Mioshi, Eneida

    2017-01-01

    The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences. PMID:28106550

  19. The Sociocultural Context of Caregiving Experiences for Vietnamese Dementia Family Caregivers

    PubMed Central

    Nguyen, Kim Hanh; Dao, To Nhu; Vu, Phuoc; Arean, Patricia; Hinton, Ladson

    2015-01-01

    The goal of this qualitative study was to describe the beliefs and experiences of Vietnamese caregivers caring for a family member with dementia and to elicit their ideas about promising interventions. We recruited 10 caregivers from support groups, the Alzheimer’s Association, and local community-based organizations in Northern California. We conducted semi-structured in-depth interviews with all caregivers, as well as a focus group to obtain ideas about supportive strategies. Several themes emerged from the data: (1) Filial piety was influential in caregiving; (2) A sense of loss/grief or trauma was pervasive; and (3) Caregivers had clear sources of stress and sources of support. An overarching theme underlying these three topics was that cultural beliefs, values, and expectations impacted the caregiving experience. Suggestions for promising interventions included education, language-congruent and/or telephone support groups, case management, inclusion of the care recipient in the intervention, and importance of credibility of the intervention. It also may be valuable to include an understanding of cultural values and promotion of spirituality and religion as key components. Findings highlight targets for dementia caregiver interventions to reduce burden and distress in an understudied population. PMID:26617956

  20. The Value of Telephone Support Groups among Ethnically Diverse Caregivers of Persons with Dementia

    ERIC Educational Resources Information Center

    Bank, Adam L.; Arguelles, Soledad; Rubert, Mark; Eisdorfer, Carl; Czaja, Sara J.

    2006-01-01

    Purpose: Dementia caregiving is a rapidly growing public health problem. Logistical problems prevent many caregivers from utilizing available interventions. This article provides a demonstration of the usefulness of technology for conducting telephone-based support groups in ethnically diverse dementia caregivers. Design and Methods: Participants…

  1. Early Community-Based Service Utilization and Its Effects on Institutionalization in Dementia Caregiving

    ERIC Educational Resources Information Center

    Gaugler, Joseph E.; Kane, Robert L.; Kane, Rosalie A.; Newcomer, Robert

    2005-01-01

    Purpose: The present study attempts to determine whether utilizing community-based long-term-care services early in the dementia caregiving career delays time to nursing home placement (adjusting for severity of dementia). Design and Methods: With a reliance on data from 4,761 dementia caregivers recruited from eight catchment areas in the United…

  2. Caregiver distress and associated factors in dementia care in the community setting in China.

    PubMed

    Wang, Jing; Xiao, Lily Dongxia; Li, Xiaomei; De Bellis, Anita; Ullah, Shahid

    2015-01-01

    The aim of this study was to investigate caregiver distress in reacting to the care recipient's behavioral and psychological symptoms of dementia (BPSD) and factors contributing to caregiver distress in the community setting in China. One hundred and fifty-two family caregivers of people with dementia in community settings were assessed using the Chinese version of the Neuropsychiatric Inventory-Questionnaire and the Social Support Rating Scale. The prevalence of BPSD and caregiver distress in reacting to BPSD was higher in China than those reported in high income countries. The most common individual BPSD were apathy/indifference, depression/dysphoria and night-time behaviors. Delusions, hallucinations and apathy/indifference were rated as the most distressing to caregivers. BPSD contributed most to caregiver distress. The high level of caregiver distress identified in this study suggests that dementia services and caregiver support should be established in the public healthcare system to target the needs of people with dementia and their caregivers.

  3. Korean American dementia caregivers' attitudes toward caregiving: the role of social network versus satisfaction with social support.

    PubMed

    Lee, Youjung; Choi, Sunha

    2013-06-01

    The purpose of this study was to explore how Korean American family caregivers view the services they offer to patients with dementia. It also investigated the roles of social networks and satisfaction with social support on attitudes toward caregiving. Social network, satisfaction with social support, demographic characteristics, caregiving-related stress factors, and cultural factors were examined. We used a convenience sample of 85 Korean American dementia caregivers. The results from hierarchical multiple regression models show that the level of satisfaction with social support significantly contributed to Korean American caregivers' attitudes toward working with patients with dementia, while no statistically significant associate was found for social network. Higher levels of satisfaction with social support were associated with greater positive attitudes toward caregiving among Korean American caregivers (b = 0.26, p = .024). The implications for mental health professionals and policy makers are discussed.

  4. Needs of caregivers of the patients with dementia.

    PubMed

    Rosa, E; Lussignoli, G; Sabbatini, F; Chiappa, A; Di Cesare, S; Lamanna, L; Zanetti, O

    2010-01-01

    This study was conducted to isolate the needs families express both for medical and psychological care, and for educational and social support in 112 caregivers of patients affected by moderate to severe dementia (mini mental state examination=MMSE score: 9+/-7) consecutively recruited at our Memory Clinic, to develop approaches as individualized as possible. The medical needs caregivers express are mainly relative to a better knowledge of the disease (78%) and the exact diagnosis (65%); the education-related needs are mainly relative to the acquisition of communicational skills (83%) and the optimal handling of cognitive (77%) and behavioral disorders (81%); the psychological ones mainly concern the area of assistance induced emotional stress management (37%) and the elaboration of feelings such as anxiety, rage and guilt (49%). Variance analysis shows a correlation between emotional caregivers' needs and the subjective and objective burdens they carry. Despite the attention to the role families play in caring for patients with a diagnoses of moderate to severe dementia, caregivers still express low levels of illness-consciousness and high levels of psychological discomfort. A lot more ought to be done in order to provide better information about the disease, about appropriate cognitive and behavioral disorder management skills, and about viable psychological support.

  5. Spousal Caregiver Perspectives on a Person-Centered Social Program for Partners With Dementia.

    PubMed

    Han, Areum; Radel, Jeff

    2016-09-01

    This qualitative study explored spousal caregiver perspectives on the experience and impact of a person-centered social program for partners with dementia. Interviews with 5 caregivers and the spouses with dementia were conducted 7 to 8 months after the program ended to explore the sustained impact of the program. Interpretative phenomenological analysis was used to support in-depth exploration of interviews. Three themes emerged including benefits of the program for caregivers, initial expectations and later perspectives of caregivers about the program, and conflicting values and perspectives between caregivers and the spouses. These findings suggest participation in a person-centered social program by people with dementia benefits their caregivers, by meeting the caregivers' desire for their spouses to increase social participation and engagement in meaningful activities. Participation in the program provided a sustained benefit to one couple in particular, by encouraging the caregiver to resume arranging activities the couple once enjoyed but now had difficulty pursuing.

  6. Acceptability and Feasibility Results of a Strength-Based Skills Training Program for Dementia Caregiving Dyads

    ERIC Educational Resources Information Center

    Judge, Katherine S.; Yarry, Sarah J.; Orsulic-Jeras, Silvia

    2010-01-01

    Purpose: The current article provides an in-depth description of a dyadic intervention for individuals with dementia and their family caregivers. Using a strength-based approach, caregiving dyads received skills training across 5 key areas: (a) education regarding dementia and memory loss, (b) effective communication, (c) managing memory loss, (d)…

  7. Values and Preferences of Individuals with Dementia: Perceptions of Family Caregivers over Time

    ERIC Educational Resources Information Center

    Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.

    2013-01-01

    Purpose of the Study: Cross-sectional evidence indicates that family caregivers reporting on the importance of daily care values and preferences of individuals with mild-to-moderate dementia consistently report less importance than individuals with dementia (IWDs) self-report. Discrepancy is primarily associated with caregivers' beliefs about…

  8. Understanding Discrepancy in Perceptions of Values: Individuals with Mild to Moderate Dementia and Their Family Caregivers

    ERIC Educational Resources Information Center

    Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.

    2011-01-01

    Purpose of the Study: We explore discrepancies in perceptions of values and care preferences between individuals with dementia (IWDs) and their family caregivers. Design and Methods: We interviewed 266 dyads consisting of an individual with mild to moderate dementia and his or her family caregiver to determine IWDs' beliefs for 5 values related to…

  9. Distance Caregivers of People with Alzheimer's Disease and Related Dementia: A Phenomenological Study

    ERIC Educational Resources Information Center

    Edwards, Megan

    2010-01-01

    The population of distance caregivers of people with dementia/Alzheimer's disease has not been extensively researched. This research study focused on exploring the lived experience of people caring for someone with dementia/Alzheimer's disease from a distance (defined as 2 or more hours away) to help shed light on this caregiving population. Ten…

  10. Family Caregivers' Experiences of Caring for a Relative With Younger Onset Dementia: A Qualitative Systematic Review.

    PubMed

    Cabote, Christy Joy; Bramble, Marguerite; McCann, Damhnat

    2015-08-01

    Family caregiving for people with younger onset dementia affects everyone in the family unit. This article presents findings of a qualitative systematic review exploring the experiences of family caregivers of persons with younger onset dementia. A systematic search resulted in the inclusion of five relevant articles, and two groups within the family unit were identified-child caregivers and adult and spousal caregivers. Using the thematic synthesis approach, five themes emerged: dementia damage, grief for loss of relationship, changes in family roles, positive and negative impacts of family caregiving, and transition to formal care. The review findings support increasing evidence that despite the stress of caring for a person with dementia damage, family members have the capacity to cope, adapt, and grow through their experiences. Nurses can assist families to identify their unique strengths and enhance family resiliency so they can navigate the "lonely road" of younger onset dementia.

  11. Home-based music strategies with individuals who have dementia and their family caregivers.

    PubMed

    Hanser, Suzanne B; Butterfield-Whitcomb, Joan; Kawata, Mayu; Collins, Brett E

    2011-01-01

    The purpose of this exploratory study was to test a caregiver-administered music program with family members who have dementia. The music protocol was designed to reduce distress and enhance satisfaction with caregiving, while offering the person with dementia the potential to improve mood and psychological state. Fourteen elders with dementia and their family caregivers were recruited, and 8 completed the protocol. Both caregivers and care recipients improved self-reported relaxation, comfort, and happiness, when mean scores were compared between baseline and music conditions. Caregivers showed the most benefit. While drop-out was high (6 families dropped), and caregiving satisfaction failed to improve over time, caregivers expressed enjoyment in reminiscing and participating in musical activities with their loved ones. More direct intervention by a music therapist is recommended to improve impact.

  12. Portraits of Caregivers of End-Stage Dementia Patients Receiving Hospice Care

    ERIC Educational Resources Information Center

    Sanders, Sara; Butcher, Howard K.; Swails, Peggy; Power, James

    2009-01-01

    The purpose of this study was to investigate how caregivers respond to the end stages of dementia with the assistance from hospice. Data were collected from 27 family caregivers over the course of 10 months, with each caregiver being interviewed up to 4 times during the time that the patient received hospice care. Chart review data were also…

  13. Discharge Planning for Dementia Patients: Factors Influencing Caregiver Decisions and Satisfaction.

    ERIC Educational Resources Information Center

    Cox, Carole B.

    1996-01-01

    Data on discharge process and caregiver satisfaction were collected from 179 caregivers of hospitalized dementia patients. Findings indicate that social workers are important influences in discharge decisions especially when discharge is to a nursing home. Findings from regression analyses indicate that caregiver satisfaction is dependent on the…

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

    ERIC Educational Resources Information Center

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

    2011-01-01

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

  15. Pleasant Events, Activity Restriction, and Blood Pressure in Dementia Caregivers

    PubMed Central

    Chattillion, Elizabeth A.; Ceglowski, Jenni; Roepke, Susan K.; von Känel, Roland; Losada, Andres; Mills, Paul J.; Romero-Moreno, Rosa; Grant, Igor; Patterson, Thomas L.; Mausbach, Brent T.

    2012-01-01

    Objective A combination of high engagement in pleasurable activities and low perceived activity restriction is potentially protective for a number of health and quality of life outcomes. This study tests the newly proposed Pleasant Events and Activity Restriction (PEAR) model to explain level of blood pressure (BP) in a sample of elderly dementia caregivers. Methods This cross-sectional study included 66 caregivers, ≥ 55 years of age, providing in-home care to a relative with dementia. Planned comparisons were made to assess group differences in BP between caregivers reporting high engagement in pleasant events plus low perceived activity restriction (HPLR; N = 22) to those with low pleasure plus high restriction (LPHR; N = 23) or those with either high pleasure plus high restriction or low pleasure plus low restriction (HPHR/LPLR; N = 21). Results After adjustments for age, sex, body mass index, use of anti-hypertensive medication, physical activity, and number of health problems, HPLR participants (86.78 mm Hg) had significantly lower mean arterial pressure compared to LPHR participants (94.70 mm Hg) (p = .01, Cohen’s d=0.89) and HPHR/LPLR participants (94.84 mm Hg) (p = .023, d=0.91). Similar results were found in post-hoc comparisons of both systolic and diastolic BP. Conclusions This study extends support for the PEAR model to physical health outcomes. Differences in BP between the HPLR group and other groups were of large magnitude and thus clinically meaningful. The findings may inform intervention studies aimed at investigating whether increasing pleasant events and lowering perceived activity restriction may lower BP. PMID:22888824

  16. Usability of a Wearable Camera System for Dementia Family Caregivers

    PubMed Central

    Matthews, Judith T.; Lingler, Jennifer H.; Campbell, Grace B.; Hunsaker, Amanda E.; Hu, Lu; Pires, Bernardo R.; Hebert, Martial; Schulz, Richard

    2015-01-01

    Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86) who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers. PMID:26288888

  17. Family caregiving to those with dementia in rural Alabama: racial similarities and differences.

    PubMed

    Kosberg, Jordan I; Kaufman, Allan V; Burgio, Louis D; Leeper, James D; Sun, Fei

    2007-02-01

    This study explored differences and similarities in the experiences of African American and White family caregivers of dementia patients living in rural Alabama. This cross-sectional survey used a caregiving stress model to investigate the interrelationships between caregiving burden, mediators, and outcomes. Random-digit-dialing telephone interviews were used to obtain data on a probability sample of 74 non-Hispanic White and 67 African American caregivers. White caregivers were more likely to be married and older, used acceptance and humor as coping styles, and had fewer financial problems. African American caregivers gave more hours of care, used religion and denial as coping styles, and were less burdened. The authors have developed a methodology for obtaining a representative sample of African American and White rural caregivers. Further investigations are needed of the interactions between urban/rural location and ethnic/racial backgrounds of dementia caregivers for heuristic and applied reasons.

  18. Caregiver-recipient closeness and symptom progression in Alzheimer disease. The Cache County Dementia Progression Study.

    PubMed

    Norton, Maria C; Piercy, Kathleen W; Rabins, Peter V; Green, Robert C; Breitner, John C S; Ostbye, Truls; Corcoran, Christopher; Welsh-Bohmer, Kathleen A; Lyketsos, Constantine G; Tschanz, Joann T

    2009-09-01

    Applying Rusbult's investment model of dyadic relationships, we examined the effect of caregiver-care recipient relationship closeness (RC) on cognitive and functional decline in Alzheimer's disease. After diagnosis, 167 participants completed up to six visits, observed over an average of 20 months. Participants were 64% women, had a mean age of 86 years, and mean dementia duration of 4 years. Caregiver-rated closeness was measured using a six-item scale. In mixed models adjusted for dementia severity, dyads with higher levels of closeness (p < .05) and with spouse caregivers (p = .01) had slower cognitive decline. Effect of higher RC on functional decline was greater with spouse caregivers (p = .007). These findings of attenuated Alzheimer's dementia (AD) decline with closer relationships, particularly with spouse caregivers, are consistent with investment theory. Future interventions designed to enhance the caregiving dyadic relationship may help slow decline in AD.

  19. The Effect of a Personalized Dementia Care Intervention for Caregivers From Australian Minority Groups.

    PubMed

    Xiao, Lily Dongxia; De Bellis, Anita; Kyriazopoulos, Helena; Draper, Brian; Ullah, Shahid

    2016-02-01

    Most caregiver interventions in a multicultural society are designed to target caregivers from the mainstream culture and exclude those who are unable to speak English. This study addressed the gap by testing the hypothesis that personalized caregiver support provided by a team led by a care coordinator of the person with dementia would improve competence for caregivers from minority groups in managing dementia. A randomised controlled trial was utilised to test the hypothesis. Sixty-one family caregivers from 10 minority groups completed the trial. Outcome variables were measured prior to the intervention, at 6 and 12 months after the commencement of trial. A linear mixed effect model was used to estimate the effectiveness of the intervention. The intervention group showed a significant increase in the caregivers' sense of competence and mental components of quality of life. There were no significant differences in the caregivers' physical components of quality of life.

  20. The Disproportionate Impact Of Dementia On Family And Unpaid Caregiving To Older Adults.

    PubMed

    Kasper, Judith D; Freedman, Vicki A; Spillman, Brenda C; Wolff, Jennifer L

    2015-10-01

    The number of US adults ages sixty-five and older who are living with dementia is substantial and expected to grow, raising concerns about the demands that will be placed on family members and other unpaid caregivers. We used data from the 2011 National Health and Aging Trends Study and its companion study, the National Study of Caregiving, to investigate the role of dementia in caregiving. We found that among family and unpaid caregivers to older noninstitutionalized adults, one-third of caregivers, and 41 percent of the hours of help they provide, help people with dementia, who account for about 10 percent of older noninstitutionalized adults. Among older adults who receive help, the vast majority in both community and residential care settings other than nursing homes rely on family or unpaid caregivers (more than 90 percent and more than 80 percent, respectively), regardless of their dementia status. Caregiving is most intense, however, to older adults with dementia in community settings and from caregivers who are spouses or daughters or who live with the care recipient.

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

    PubMed Central

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

    2015-01-01

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

  2. Managing Your Loved One's Health: Development of a New Care Management Measure for Dementia Family Caregivers.

    PubMed

    Sadak, Tatiana; Wright, Jacob; Borson, Soo

    2016-07-05

    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.

  3. Therapeutic interactions to enhance the mental health and wellness of dementia caregivers and patients.

    PubMed

    Clarke, Philip B; Shaw, Edward G; Villalba, Jose A; Alli, Rabeena; Sink, Kaycee M

    2013-11-01

    Individuals with dementia and their family caregivers have higher rates of stress and mental health concerns than the general population. Gerontological nurses have unique and valuable opportunities to conduct therapeutic interactions that support the mental health and well-being of patients and family members. Information regarding dementia patient and family caregiver stressors are presented, followed by engaging strategies for opening therapeutic conversations about these topics. Ways in which gerontological nurses can facilitate coping skills and strengths identification are also outlined.

  4. Compassion Fatigue in Adult Daughter Caregivers of a Parent with Dementia

    PubMed Central

    Day, Jennifer R.; Anderson, Ruth A.; Davis, Linda L.

    2015-01-01

    Adult daughters face distinct challenges caring for parents with dementia and may experience compassion fatigue: the combination of helplessness, hopelessness, an inability to be empathic, and a sense of isolation resulting from prolonged exposure to perceived suffering. Prior research on compassion fatigue has focused on professional healthcare providers and has overlooked filial caregivers. This study attempts to identify and explore risk factors for compassion fatigue in adult daughter caregivers and to substantiate further study of compassion fatigue in family caregivers. We used content analysis of baseline interviews with 12 adult daughter caregivers of a parent with dementia who participated in a randomized trial of homecare training. Four themes were identified in adult daughter caregiver interviews: (a) uncertainty; (b) doubt; (c) attachment; and (d) strain. Findings indicated adult daughter caregivers are at risk for compassion fatigue, supporting the need for a larger study exploring compassion fatigue in this population. PMID:25259643

  5. Linking family dynamics and the mental health of Colombian dementia caregivers.

    PubMed

    Sutter, Megan; Perrin, Paul B; Chang, Yu-Ping; Hoyos, Guillermo Ramirez; Buraye, Jaqueline Arabia; Arango-Lasprilla, Juan Carlos

    2014-02-01

    This cross-sectional, quantitative, self-report study examined the relationship between family dynamics (cohesion, flexibility, pathology/ functioning, communication, family satisfaction, and empathy) and mental health (depression, burden, stress, and satisfaction with life [SWL]) in 90 dementia caregivers from Colombia. Hierarchical multiple regressions controlling for caregiver demographics found that family dynamics were significantly associated with caregiver depression, stress, and SWL and marginally associated with burden. Within these regressions, empathy was uniquely associated with stress; flexibility with depression and marginally with SWL; and family communication marginally with burden and stress. Nearly all family dynamic variables were bivariately associated with caregiver mental health variables, such that caregivers had stronger mental health when their family dynamics were healthy. Family-systems interventions in global regions with high levels of familism like that in the current study may improve family empathy, flexibility, and communication, thereby producing better caregiver mental health and better informal care for people with dementia.

  6. Compassion fatigue in adult daughter caregivers of a parent with dementia.

    PubMed

    Day, Jennifer R; Anderson, Ruth A; Davis, Linda L

    2014-10-01

    Adult daughters face distinct challenges caring for parents with dementia and may experience compassion fatigue: the combination of helplessness, hopelessness, an inability to be empathic, and a sense of isolation resulting from prolonged exposure to perceived suffering. Prior research on compassion fatigue has focused on professional healthcare providers and has overlooked filial caregivers. This study attempts to identify and explore risk factors for compassion fatigue in adult daughter caregivers and to substantiate further study of compassion fatigue in family caregivers. We used content analysis of baseline interviews with 12 adult daughter caregivers of a parent with dementia who participated in a randomized trial of homecare training. Four themes were identified in adult daughter caregiver interviews: (a) uncertainty; (b) doubt; (c) attachment; and (d) strain. Findings indicated adult daughter caregivers are at risk for compassion fatigue, supporting the need for a larger study exploring compassion fatigue in this population.

  7. [Caregivers faced with anxiety-depressive disorders in elderly people with severe dementia].

    PubMed

    Grondin, Marie; Bungener, Catherine

    2015-01-01

    A survey of 104 caregivers in nursing homes assesses their knowledge of anxiety-depressive disorders in patients with severe dementia with aphasia and their proposed treatment. Despite a lack of training, information and tools to assess these disorders and offer adapted care, this survey highlights in particular caregivers' concern for these issues.

  8. A Measure of Subjective Burden for Dementia Care: The Caregiving Difficulty Scale Intellectual Disability

    ERIC Educational Resources Information Center

    McCallion, P.; McCarron, M.; Force, L. T.

    2005-01-01

    It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more…

  9. Experimental Evaluation of the Effectiveness of Group Intervention for Dementia Caregivers.

    ERIC Educational Resources Information Center

    Haley, William E.; And Others

    1987-01-01

    Evaluated the effectiveness of group interventions for caregivers of elderly dementia patients. Indicated that, although caregivers rated the groups as quite helpful, group participation did not lead to improvements on objective measures of depression, life satisfaction, social support, or coping variables. (Author/ABB)

  10. Assisted Vacations for Men with Dementia and Their Caregiving Spouses: Evaluation of Health-Related Effects

    ERIC Educational Resources Information Center

    Wilz, Gabriele; Fink-Heitz, Margit

    2008-01-01

    Purpose: In this study, we conducted the first evaluation of assisted vacations for persons with dementia and their caregivers in the field of caregiving research. Design and Methods: We used a quasi-experimental, two-group, repeated measures design with two measuring times (preintervention, 3-month follow-up) to examine whether assisted vacations…

  11. Stress and Burden among Caregivers of Patients with Lewy Body Dementia

    ERIC Educational Resources Information Center

    Leggett, Amanda N.; Zarit, Steven; Taylor, Angela; Galvin, James E.

    2011-01-01

    Purpose: Patients with Lewy body dementia (LBD) may present a unique set of symptoms and challenges to family caregivers compared with other types of dementia. Prominent difficulties include motor impairment, activities of daily living (ADLs) disability, recurrent behavioral and emotional problems (BEPs), and diagnostic difficulties. These…

  12. The experiences of culturally and linguistically diverse family caregivers in utilising dementia services in Australia

    PubMed Central

    2013-01-01

    Background Older people from culturally and linguistically diverse groups are underrepresented in residential aged care but overrepresented in community aged care in Australia. However, little is known about culturally and linguistically diverse family caregivers in utilising dementia services in Australia because previous studies mainly focused on the majority cultural group. Experiences of caregivers from culturally and linguistically diverse groups who are eligible to utilise dementia services in Australia are needed in order to optimize the utilisation of dementia services for these caregivers. Methods The aim of the study was to explore the experiences of family caregivers from Chinese, Greek, Italian and Vietnamese groups in utilising dementia services. Gadamer's philosophical hermeneutics was used to interpret the experiences of the participants. Focus group discussions and in-depth individual interviews were used to collect data. Data collection was conducted over a six month period in 2011. In total, 46 family caregivers who were caring for 39 persons with dementia participated. Results Four themes were revealed: (1) negotiating services for the person with dementia; (2) the impact of acculturation on service utilisation; (3) the characteristics of satisfactory services; and (4) negative experiences in utilising services. The present study revealed that the participation of caregivers from culturally and linguistically diverse groups in planning and managing dementia services ranged markedly from limited participation to full participation. Conclusions The findings of this study suggest that caregivers from culturally and linguistically diverse groups need to be fully prepared so they can participate in the utilisation of dementia services available to them in Australia. PMID:24148155

  13. Cognitive Health Assessment and Establishment of a Virtual Cohort of Dementia Caregivers

    PubMed Central

    Lathan, Corinna; Wallace, Angela S.; Shewbridge, Rita; Ng, Nicole; Morrison, Glenn; Resnick, Helaine E.

    2016-01-01

    Background Many factors impact caregivers’ cognitive health and, by extension, their ability to provide care. This study examined the relationship between psychosocial factors and cognitive performance among dementia caregivers and established a virtual cohort of caregivers for future research. Methods Data on 527 caregivers were collected via a Web-based survey that assessed cognitive performance. Caregiver data were compared to corresponding data from 527 age-, race-, gender-, and education-matched controls from a normative database. Caregiver self-reported sleep, stress, health, and social support were also assessed. Results Caregivers performed significantly worse than controls on 3 of 5 cognitive subtests. Stress, sleep, perceived support, self-rated health, years of caregiving, race, and gender were significant predictors of cognitive performance. Conclusion In this sample of dementia caregivers, psychosocial factors interacted in complex ways to impact cognitive performance. Further investigation is needed to better understand how these factors affect cognitive performance among caregivers. This could be accomplished by the establishment of a virtual cohort that facilitates the development of digital tools to support the evaluation and management of caregiver needs in a manner that helps them remain effective in their caregiving roles. PMID:27099613

  14. Recruiting Dementia Caregivers Into Clinical Trials: Lessons Learnt From the Australian TRANSCENDENT Trial.

    PubMed

    Leach, Matthew J; Ziaian, Tahereh; Francis, Andrew; Agnew, Tamara

    2016-01-01

    The burden on those caring for a person with dementia is substantial. Although quality research assists in addressing the needs of these caregivers, recruiting caregivers into clinical studies is often problematic. This investigation explores the difficulties and successes in recruiting dementia caregivers into community-based clinical research by reporting the findings of a mixed-method substudy of a multicenter randomized controlled trial involving 40 community-dwelling dementia caregivers living in Adelaide, South Australia. Data for the substudy were derived from standardized trial monitoring documentation and structured telephone interviews. From a total of 16 distinct methods used across a 12-month recruitment campaign, the most cost-effective strategy was the distribution of flyers through a single study site. This approach generated the greatest number of enrollments of all methods used, achieving a 67% recruitment yield. The least cost-effective strategy, with a 0% recruitment yield, was the publication of a newspaper advertisement. Themes that emerged from the interviews pointed toward 5 key facilitators and 3 barriers to future trial recruitment. This study has generated new insights into the effective recruitment of dementia caregivers into clinical trials. We anticipate that these lessons learnt will assist in shaping the recruitment strategies of future studies of dementia caregivers.

  15. The Opinion of Professional Caregivers About The Platform UnderstAID for Patients with Dementia

    PubMed Central

    Malak, Roksana; Krawczyk-Wasielewska, Agnieszka; Mojs, Ewa; Grobelny, Bartosz; Głodowska, Katarzyna B.; Millán-Calenti, José Carlos; Núñez-Naveira, Laura; Samborski, Włodzimierz

    2016-01-01

    Background The person with dementia should be treated as an unique person regarding symptoms directly associated with dementia, such as problems with memory, hallucinations, and delusions, as well as other physical, mental, or neurological deficits. The symptoms not directly typical of dementia, such as musculoskeletal disorders or depression, should be also be considered in order to improve the quality of life of a person with dementia. That is why professional caregivers have to broaden their current knowledge not only of medical symptoms but also of the patient’s psychosocial condition and increase their inquisitiveness about the individual condition of the patient. The aim of the study was to get to know the opinion of professional caregivers about the UnderstAID platform and its usefulness for informal caregivers. Material/Methods Participants in the study group consisted of professional caregivers: nurses, sociologists, psychologists, physiotherapists, and occupational therapists, all of whom specialized in geriatrics and had experience in working with people with dementia. All professional caregivers answered 24 questions that refer to positive and negative aspects of the UnderstAID platform. Results The study group of professional caregivers highly appreciated that the application could give support to caregivers (mean score of 4.78; 5 points means that they totally agreed, and 1 point means that they totally disagreed) and that a wide range of multimedia materials helped the informal caregivers to gain a better understanding of the contents (mean score of 4.78). There was a statistically significant correlation between the age of the professional caregivers and the frequency of positive opinions that the UnderstAID application gave support to caregivers of relatives with dementia (p=0.028) and the opinion that videos, photos, and pictures may help the informal caregivers to gain a better understanding of the contents (p=0.028). Conclusions A group of

  16. Preliminary Evidence for Effectiveness of Resourcefulness Training in Women Dementia Caregivers

    PubMed Central

    Zauszniewski, JA; Lekhak, N; Burant, CJ; Variath, M; Morris, DL

    2016-01-01

    Nearly 10 million women in the U.S. are caregivers for an elder with dementia, which often produces overwhelming stress and adversely affects their health. Resourcefulness training (RT) may promote the caregiver’s optimal health and continue in their caregiving role. This pilot trial of 138 women dementia caregivers examined the effectiveness of RT on perceived stress, depressive cognitions, and negative emotions over time. Caregivers were first randomized to RT or no RT and then further randomized into random versus choice conditions followed by assignment to the journal or recorder methods, thus creating eight groups. We examined differences on perceived stress, depressive cognitions, and negative emotions between groups: 1) RT versus no-RT, 2) choice versus random condition; and 3) journaling versus recording. Significant time by group interactions were found on stress (F=4.36, p<.05), depressive cognitions (F=10.93, p<.001), and negative emotions (F=20.48, p<.001) in the RT versus no RT group. No differences were found between the random versus choice conditions or the journaling versus recording methods for practicing the RT skills. The results provide evidence for the effectiveness of RT for decreasing stress, depressive cognitions, and negative emotions in women caregivers of elders with dementia. The findings also suggest the need for further examination of the effects of allowing caregivers to choose a method for practicing RT in larger samples if caregivers of elders with dementia. PMID:27500286

  17. Sleep disturbances in caregivers of persons with dementia: Contributing factors and treatment implications

    PubMed Central

    McCurry, Susan M.; Logsdon, Rebecca G.; Teri, Linda; Vitiello, Michael V.

    2007-01-01

    Estimates suggest that there are more than 10 million adult caregivers of persons with dementia, two-thirds of who experience some form of sleep disturbance during the course of their caregiving career. Health care professionals are in the best position to detect and address this significant public health problem. Three major contributors to caregiver sleep disturbance are discussed in this paper: 1) the presence of caregiver disrupted sleep routines; 2) caregiver burden and depression; and, 3) the caregiver’s physical health status. Successful treatment of a caregiver’s sleep disturbance requires careful consideration of each of these contributors. We review and analyze the scientific literature concerning the multiple complex factors associated with the development and maintenance of sleep disturbances in caregivers. We provide a clinical vignette that illustrates the interplay of these contributing factors, and close by providing recommendations for clinicians and researchers treating and investigating the development and maintenance of sleep problems in family caregivers. PMID:17287134

  18. Finding Meaning in Written Emotional Expression by Family Caregivers of Persons With Dementia.

    PubMed

    Butcher, Howard K; Gordon, Jean K; Ko, Ji Woon; Perkhounkova, Yelena; Cho, Jun Young; Rinner, Andrew; Lutgendorf, Susan

    2016-12-01

    This study tested the effect of written emotional expression on the ability to find meaning in caregiving and the effects of finding meaning on emotional state and psychological burden in 91 dementia family caregivers. In a pretest-posttest design, participants were randomly assigned to either an experimental or a comparison group. Experimental caregivers (n = 57) wrote about their deepest thoughts and feelings about caring for a family member with dementia, whereas those in the comparison group (n = 34) wrote about nonemotional topics. Results showed enhanced meaning-making abilities in experimental participants relative to comparison participants, particularly for those who used more positive emotion words. Improved meaning-making ability was in turn associated with psychological benefits at posttest, but experimental participants did not show significantly more benefit than comparison participants. We explore the mediating roles of the meaning-making process as well as some of the background characteristics of the individual caregivers and their caregiving environments.

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

    PubMed

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

    2014-09-01

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

  20. Why are spousal caregivers more prevalent than nonspousal caregivers as study partners in AD dementia clinical trials?

    PubMed Central

    Cary, Mark S.; Rubright, Jonathan D.; Grill, Joshua D.; Karlawish, Jason

    2014-01-01

    Objectives Most Alzheimer’s disease (AD) caregivers are not spouses and yet most AD dementia trials enroll spousal study partners. This study examines the association between caregiver relationship to the patient and willingness to enroll in an AD clinical trial and how caregiver burden and research attitudes modify willingness. Design Interviews with 103 AD caregivers who met criteria for ability to serve as a study partner. Results 54% of caregivers were spouses or domestic partners and the remaining were adult children. Willingness to enroll a patient in a clinical trial was associated with being a spouse (OR = 2.53, p = 0.01), increasing age (OR = 1.39, p = 0.01), and increasing scores on the Research Attitudes Questionnaire (OR = 1.39, p < 0.001). No measures of caregiver burden or patient health were significant predictors of willingness. In multivariate models both research attitudes (OR = 1.37, p < 0.001) and being a spouse, as opposed to an adult child, (OR = 2.06, p = 0.048) were independently associated with willingness to participate. Conclusions Spousal caregivers had both a higher willingness to participate and a more positive attitude toward research. Caregiver burden had no association with willingness to participate. The strongest predictor of willingness was research attitudes. PMID:24805971

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

    PubMed

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

    2016-12-04

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

  2. The influence of neuroticism and extraversion on the perceived burden of dementia caregivers: an exploratory study.

    PubMed

    González-Abraldes, Isabel; Millán-Calenti, José Carlos; Lorenzo-López, Laura; Maseda, Ana

    2013-01-01

    Most studies reflect dementia caregivers usually sustain higher levels of burden compared to other caregivers. However, they do not consider variability within the caregiver, such as personality traits. The purpose of this study was to examine the influence of extraversion and neuroticism on dementia caregiver burden. A cross-sectional descriptive study was conducted with 33 caregivers looking after demented-patients. All caregivers had intense burden levels, and their personality, depression, anxiety and self-rated health were evaluated. Personality variables had important effects on the caregiver burden and consequences on their mental health. Neuroticism was significantly correlated with burden (r=0.6, p<0.01), depression (r=0.68, p<0.01) and both anxiety measures, state (r=0.46, p<0.01) and trait (r=0.67, p<0.01). Extraversion was significantly correlated with neuroticism (r=-0.42, p<0.01) and burden (r=-0.46, p<0.01). Finally, depression was significantly correlated with state (r=0.63, p<0.01) and trait anxiety (r=0.66, p<0.01). These results indicate the importance of considering the caregiver personality in the theoretical and empirical models of the caring process. It is necessary to adequately assess the caregiver personality, as those presenting high levels of neuroticism and low levels of extraversion are more vulnerable to experience negative caring effects.

  3. A Telephone Intervention for Dementia Caregivers: Background, Design, and Baseline Characteristics

    PubMed Central

    Tremont, Geoffrey; Davis, Jennifer; Papandonatos, George D.; Grover, Christine; Ott, Brian R.; Fortinsky, Richard H.; Gozalo, Pedro; Bishop, Duane S.

    2013-01-01

    Family caregivers of individuals with dementia are at heightened risk for emotional and mental health problems. Many caregivers do not seek assistance or become isolated in their caregiving role. Multi-component interventions have demonstrated efficacy for reducing emotional distress and burden, although these approaches are potentially costly and are not widely accessible. In response to these issues, we developed the Family Intervention: Telephone Tracking – Caregiver (FITT-C), which is an entirely telephone-based psychosocial intervention. The purpose of this paper is to describe the study design, methodology, and baseline data for the trial. This study uses a randomized controlled trial design to examine the efficacy of the FITT-C to reduce depressive symptoms and burden in distressed dementia caregivers. All participants (n = 250) received a packet of educational materials and were randomly assigned to receive 6 months of the FITT-C intervention or non-directive telephone support. The FITT-C intervention was designed to reduce distress in caregivers and is based on the McMaster Model of Family Functioning and the Lazarus, transition theory, and Folkman Stress and Coping Models. The primary dependent variables were depressive symptoms (Centers for Epidemiological Studies – Depression) and burden (Zarit Burden Interview, Revised Memory and Behavior Problems Checklist – Reaction). Secondary outcome measures included family functioning, self-efficacy, and health-related quality of life. Results of the study will provide important data about the efficacy of a telephone-based approach to reduce distress in dementia caregivers. PMID:23916916

  4. Beyond Familism: Ethics of Care of Latina Caregivers of Elderly Parents With Dementia

    PubMed Central

    Flores, Yvette G.; Hinton, Ladson; Barker, Judith C.; Franz, Carol E.; Velasquez, Alexandra

    2010-01-01

    Caregiving for elderly relatives with dementia is described as a stressful and challenging obligation which disproportionately befalls women in families. Studies of Latina caregivers tend to focus on how the cultural value of familism shapes caregiving expectations and experiences. However, these studies tend not to distinguish between familism as ideology and familism as practice to evaluate how caregiving may or may not conform to prescribed cultural scripts, nor to examine the ethics of care utilized by family caregivers. Through a case study of a second-generation daughter, we explore the nuances of an ethics of care that constitute her caregiving experiences and the tensions generated by efforts to respect divergent cultural mandates. PMID:19894151

  5. Conflict Resolution and Distress in Dementia Caregiver Families: Comparison of Cubans and White Non-Hispanics

    PubMed Central

    Mitrani, Victoria B.; Vaughan, Ellen L.; McCabe, Brian E.; Feaster, Daniel J.

    2010-01-01

    This study investigated the role of family conflict resolution as a mediator of the relationship between ethnicity and psychological distress in dementia caregivers. The sample was composed of the families of 182 caregivers who participated in REACH (Resources for Enhancing Alzheimer’s Caregiver Health). The sample consisted of 84 Cuban American and 98 non-Hispanic White American families. Mediation analyses revealed that both income and conflict resolution partially mediated the relationship between ethnicity and caregiver psychological distress. Specifically, Cuban American families were less likely than non-Hispanic White families to reach a resolution to their disagreements, which may have rendered the caregiver at greater risk for psychological distress. These results suggest that Cuban American caregivers may benefit from interventions that improve the family’s ability to resolve conflicts. PMID:20448830

  6. Long-Term Effects of Bereavement and Caregiver Intervention on Dementia Caregiver Depressive Symptoms

    ERIC Educational Resources Information Center

    Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.

    2008-01-01

    Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly…

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

    PubMed Central

    2013-01-01

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

  8. The Experience of High Levels of Grief in Caregivers of Persons with Alzheimer's Disease and Related Dementia

    ERIC Educational Resources Information Center

    Sanders, Sara; Ott, Carol H.; Kelber, Sheryl T.; Noonan, Patricia

    2008-01-01

    An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to…

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

    ERIC Educational Resources Information Center

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

    2013-01-01

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

  10. Benefits of a poetry writing intervention for family caregivers of elders with dementia.

    PubMed

    Kidd, Lori I; Zauszniewski, Jaclene A; Morris, Diana L

    2011-01-01

    This pilot clinical trial tested effectiveness of a poetry writing intervention for family caregivers of elders with dementia. This paper presents findings from a larger study using mixed methods to examine outcome variables of self-transcendence, resilience, depressive symptoms, and subjective caregiver burden. Findings reported here focus on qualitative analysis of in-depth interviews conducted with participants following their poetry writing experience. A grounded theory approach was used. Themes that arose from the data support a mid-range theory of self-affirmation in caregivers with subthemes of achievement, catharsis, greater acceptance, empathy, self-awareness, reflection, creative and fun, positive challenge, and helping others.

  11. Family caregiver challenges in dementia care in Australia and China: a critical perspective

    PubMed Central

    2014-01-01

    Background Both Australia and China have a large proportion of people with dementia and the prevalence will triple in Australia and increase five times in China by 2050. The majority of people with dementia are reliant on family caregivers to provide daily care and to maintain the dignity in both countries. As a consequence, caregiver burden has become a major concern because of the negative impact on the care recipients’ and the caregivers’ health. It is strongly recommended that cross-national collaboration should be conducted to share experiences in fighting dementia. The aim of this study was to compare socially and culturally constructed enablers and barriers pertinent to dementia caregivers in one capital city in Australia and one capital city in China through critical reflection on the caregivers’ subjective and objective experiences for the improvement of dementia care services in both countries. Methods Giddens’ Structuration Theory was used as a framework to guide a concurrent mixed methods design with the qualitative strand as a priority. In the qualitative strand, data were collected by focus groups and in-depth interviews while in the quantitative strand, data were collected by questionnaire survey. Results In total 148 caregivers participated in the project with 57 of them from Australia (26 and 31 in the qualitative and quantitative strands respectively) and 91 of them from China (23 and 68 in the qualitative and quantitative strands respectively). Findings from the qualitative and quantitative strands were presented as three categories: A higher objective burden in the Chinese cohort versus a higher subjective burden in the Australian cohort; Unmet need for caregiver support in Australia and China; and Expectations for improving dementia services in Australia and for developing dementia services in China. Conclusions Dementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like

  12. Resourcefulness Training for Women Dementia Caregivers: Acceptability and Feasibility of Two Methods.

    PubMed

    Zauszniewski, Jaclene A; Lekhak, Nirmala; Napoleon, Betty; Morris, Diana L

    2016-01-01

    Almost 10 million women in the United States are caregivers for elders with dementia and many experience extreme stress that compromises their health. Acceptable and feasible interventions to teach them resourcefulness skills for managing stress may improve their health and facilitate continued caregiving. This study examined two commonly used methods for practicing skills taught during resourcefulness training (RT) to women caregivers of elders with dementia (n=63): journaling and digital voice recording. It also explored whether providing caregivers a choice between the two methods made it more acceptable or feasible. Qualitative and quantitative data were collected before, during, and after RT. Caregivers who recorded used more words (M=5446) but recorded fewer days (M=17) than those who journaled (M=2792 words and M=27 days). Similar concerns in relation to time management and practice method were expressed by women caregivers irrespective of practice method (journal versus recorder) or random versus choice condition. While journaling was more frequent than recording, more words were expressed during recordings. Perceived stress and depressive symptoms were unrelated to the number of practice days or word counts, suggesting RT acceptability and feasibility even for highly stressed or depressed caregivers. Because intervention feasibility is important for RT effectiveness testing, alternatives to the journaling and recording methods for practicing RT skills should be considered.

  13. Danger and dementia: caregiver experiences and shifting social roles during a highly active hurricane season.

    PubMed

    Christensen, Janelle J; Castañeda, Heide

    2014-01-01

    This study examined disaster preparedness and decision-making by caregivers of community-dwelling persons diagnosed with Alzheimer's or a related dementia (ADRD). Interviews were conducted with 20 caregivers in South Florida. Twelve of these interviews include caregiving experiences during the highly active 2004-2005 hurricane seasons. Results indicate that persons in earlier stages of ADRD can, and often do, remain engaged in the disaster preparation and planning process. However, during the early stages, persons may also resist evacuation, even if the caregiver felt it was necessary. During later stages of the disease, caregivers reported less resistance to disaster-related decisions, however, with the tradeoff of less ability to assist with preparation.

  14. Caregiving Styles: A Cognitive and Behavioral Typology Associated with Dementia Family Caregiving

    ERIC Educational Resources Information Center

    Corcoran, Mary A.

    2011-01-01

    Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted.…

  15. Neuropsychiatric Symptoms in Parkinson’s Disease Dementia Are Associated with Increased Caregiver Burden

    PubMed Central

    Oh, Yoon-Sang; Lee, Ji E.; Lee, Phil Hyu; Kim, Joong-Seok

    2015-01-01

    Objective Neuropsychiatric symptoms are common in Parkinson’s disease dementia (PDD). Frequent and severe neuropsychiatric symptoms create high levels of distress for patients and caregivers, decreasing their quality of life. The aim of this study was to investigate neuropsychiatric symptoms that may contribute to increased caregiver burden in PDD patients. Methods Forty-eight PDD patients were assessed using the 12-item Neuropsychiatric Inventory (NPI) to determine the frequency and severity of mental and behavioral problems. The Burden Interview and Caregiver Burden Inventory were used to evaluate caregiver burden. Results All but one patient showed one or more neuropsychiatric symptoms. The three most frequent neuropsychiatric symptoms were apathy (70.8%) and anxiety (70.8%), followed by depression (68.7%). More severe neuropsychiatric symptoms were significantly correlated with increased caregiver burden. The domains of delusion, hallucination, agitation and aggression, anxiety, irritability and lability, and aberrant motor behavior were associated with caregiver stress. After controlling for age and other potential confounding variables, total NPI score was significantly associated with caregiver burden. Conclusions The results of this study confirm that neuropsychiatric symptoms are frequent and severe in patients with PDD and are associated with increased caregiver distress. A detailed evaluation and management of neuropsychiatric symptoms in PDD patients appears necessary to improve patient quality of life and reduce caregiver burden. PMID:25614783

  16. Family caregivers' perspectives on dementia-related dressing difficulties at home: The preservation of self model.

    PubMed

    Mahoney, Diane F; LaRose, Sharon; Mahoney, Edward L

    2015-07-01

    Alzheimer's caregiving literature acknowledges dressing as a major daily stressor but research on this topic is negligible. A qualitative grounded theory approach was used to explore Alzheimer's family caregivers' perspectives about issues that arise when their family members lose the ability to dress independently. Three focus groups and seven individual interviews were conducted and audio recorded with 25 information rich caregivers. Constant comparative analyses and coding of the transcripts identified six major themes leading to a 'Preservation of Self Model: Care Recipient to Care Giver' that portrays the caregiving trajectory. Initially, caregivers tried to protect the self dignity of the family member by maintaining usual routines and absorbing blame for difficulties. Dressing 'battles' occurred and caregivers learned management through trial and error. Crossing adult-child-gender role boundaries escalated discomfort. When facing unrelenting demands, concern shifted to preservation of the caregivers' health and self. Results suggest that caregivers would benefit from more pro-active dressing counseling to shorten the trial and error periods, dressing aids more relevant to dementia and more knowledgeable helpers. The preservation model can facilitate understanding of the caregiving trajectory and guide intervention support.

  17. 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…

  18. Impact of Two Psychosocial Interventions on White and African American Family Caregivers of Individuals with Dementia

    ERIC Educational Resources Information Center

    Burgio, Louis; Stevens, Alan; Guy; Delois; Roth, David L.; Haley, William E.

    2003-01-01

    Purpose: We developed manual-guided, replicable interventions based on common needs and cultural preferences of White and African American family caregivers (CGs) of individuals with dementia, and we evaluated these interventions after a 6-month follow-up. Design and Methods: We randomly assigned White (n = 70) and African American (n = 48) CGs of…

  19. The Effects of Coping on Health Outcomes in Caregiving Spouses of Dementia Patients.

    ERIC Educational Resources Information Center

    Neundorfer, Marcia McCarthy

    This study was undertaken to determine the effects of different ways of coping on caregivers' physical health and symptoms of depression and anxiety. Sixty persons living with and caring for a spouse with Alzheimer's disease (n=58) or multi-infarct dementia (n=2) were interviewed and evaluated by a series of instruments. Independent variables…

  20. 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…

  1. Minimizing Confusion and Disorientation: Cognitive Support Work in Informal Dementia Caregiving

    PubMed Central

    Berry, Brandon

    2015-01-01

    Drawing from ethnographic fieldwork and in-depth interviews, I explain how informal dementia caregivers attempt to reduce the affected individual’s moments of confusion and disorientation through cognitive support work. I identify three stages through which such support takes shape and then gradually declines in usage. In a first stage, family members collaborate with affected individuals to first identify and then to avoid “triggers” that elicit sudden bouts of confusion. In a second stage, caregivers lose the effective collaboration of the affected individual and begin unilateral attempts to minimize confused states through pre-emptive conversational techniques, third-party interactional support, and social-environment shifts. In a third stage, caregivers learn that the affected individual has reached a level of impairment that does not respond well to efforts at reduction and begin abandoning strategies. I identify the motivations driving cognitive support work and discuss the role of lay health knowledge in dementia caregiving. I conclude by considering the utility of cognitive support as a concept within dementia caregiving. PMID:24984915

  2. Caregiver burden in Parkinson disease with dementia compared to Alzheimer disease in Korea.

    PubMed

    Shin, Hyeeun; Youn, Jinyoung; Kim, Ji Sun; Lee, Jun-Young; Cho, Jin Whan

    2012-12-01

    We compared caregiver burden in Parkinson disease with dementia (PDD) to that in Alzheimer disease (AD) and examined the factors contributing to the burden in PDD. Totally, 42 patients with PDD and 109 patients with AD and their caregivers participated in this study. The caregiver burden was measured using the Burden Interview (BI). Scores of Barthel activities of daily living (BADLs), Mini-Mental State Examination, Clinical Dementia Rating of patients, and score of Center for Epidemiologic Studies Depression scale, and Euro-quality of life of the caregivers were examined. The Unified Parkinson's Disease Rating Scale (UPDRS) and Hoehn and Yahr stage of the patients were administered to assess burden relating to parkinsonism on PDD. We used multiple linear regression to assess the predictors. The BI of caregivers was higher in PDD (47.9, Standard deviation [SD]: 3.8) than in AD (36.3, SD:2.1). In the AD group, the BI was predicted by cognitive function ((β±SE: -0.8±0.4, P value=04) and basic ADL status of patients (β±SE: -1.3±0.1, P<.001), depressive symptoms (β±SE: 1.1±0.1, P<.001), and poor quality of life (β±SE: -0.2±0.1, P=.017) in caregivers. In PDD group, BI was predicted only by scores of Part 1 on the UPDRS (β±SE: 2.9±1.3, P=.03) of patients and depressive symptoms (β±SE: 1.1±0.2, P<.001) of the caregivers. We concluded the caregiver burden is higher in PDD than in AD and factors predicting burden are different in AD and PDD. In patients with PDD, the neuropsychiatric problems are the major contributor to caregiver burden.

  3. Caregiving Styles: A Cognitive and Behavioral Typology Associated With Dementia Family Caregiving

    PubMed Central

    Corcoran, Mary A.

    2011-01-01

    Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer’s disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a “cultural activity,” and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding this thinking–action process has important implications for future research and service. Reasoned action theory provides empirical evidence that attitudes and beliefs, as they are influenced by the social environment, predict intentions to act. In turn, behavioral intentions can reliably predict behaviors. This grounded theory study describes a typology of caregiving styles relevant to family members of an individual with ADRD, where caregiving style is defined as a culturally based pattern in thinking and action. The goal of this study was to characterize the relationship between caregiver intentions and care strategies. Methods: Study participants included 97 individuals residing in the Washington, DC, area, who provide daily care for a family member with ADRD. Narrative data were collected from each caregiver during three 1-hr interview sessions. A subset of 30 caregiver–care recipient (CR) dyads was videotaped during typical interactions. Results: Four caregiving styles were identified (facilitating, balancing, advocating, and directing), which differ primarily in the intended focus of care and preferred interactions with the CR. Implications: The results provide a foundation for future studies of the relationships between sociocultural context, caregiving styles and strategies, and ensuing outcomes for caregiver–CR dyads. PMID:21335422

  4. Relationship Between Emotions, Emotion Regulation, and Well-Being of Professional Caregivers of People With Dementia.

    PubMed

    Bassal, Catherine; Czellar, Judith; Kaiser, Susanne; Dan-Glauser, Elise S

    2016-05-01

    So far, limited research has been carried out to better understand the interplay between the emotions, the use of emotion regulation strategies, and the well-being of professional caregivers of People with Dementia (PwD). This pilot study (N = 43 professional caregivers) aimed to (1) describe the type and frequency of emotions experienced at work; (2) analyze the associations between experienced emotions, emotion regulation strategies, and well-being; and (3) test whether the use of specific emotion regulation strategies moderates the relationship between experienced emotions and emotional exhaustion. In the challenging context of professionally caring for PwD, results suggest that (1) caregivers experience positive emotions more frequently than negative emotions; (2) caregivers using relatively inappropriate regulation strategies are more likely to experience negative emotions, less likely to experience positive emotions, and have poorer physical and mental health; and (3) expressive suppression significantly moderates the relationship between positive experienced emotions and emotional exhaustion.

  5. Acceptability and Feasibility Results of a Strength-Based Skills Training Program for Dementia Caregiving Dyads

    PubMed Central

    Judge, Katherine S.; Yarry, Sarah J.; Orsulic-Jeras, Silvia

    2010-01-01

    Purpose: The current article provides an in-depth description of a dyadic intervention for individuals with dementia and their family caregivers. Using a strength-based approach, caregiving dyads received skills training across 5 key areas: (a) education regarding dementia and memory loss, (b) effective communication, (c) managing memory loss, (d) staying active, and (e) recognizing emotions and behaviors. Results of the acceptability and feasibility of the intervention protocols are also presented. Design and Methods: Caregiving dyads were randomly assigned to participate in the intervention. Participants in the treatment condition were asked to complete a series of evaluation questions after each intervention session and an overall evaluation of the program. Data were also collected from the intervention specialists who implemented the protocols. Results: Overall, the evaluation data indicated that the content and process of the intervention were viewed as highly acceptable and feasible by both participants and intervention specialists. Implications: This article highlights the merit of using a strength-based approach for working with caregiving dyads with dementia and how a single intervention protocol can be used to address the goals of both care partners. Furthermore, the intervention program was found to be highly acceptable and feasible, which is an important aspect of developing dyadic protocols. PMID:19808841

  6. Physical activity attenuates neuropsychiatric disturbances and caregiver burden in patients with dementia

    PubMed Central

    Christofoletti, Gustavo; Oliani, Merlyn Mércia; Bucken-Gobbi, Lílian Teresa; Gobbi, Sebastião; Beinotti, Fernanda; Stella, Florindo

    2011-01-01

    INTRODUCTION: A significant benefit from physical activity has recently been described in some patients who suffer from neurodegenerative diseases. OBJECTIVE: To assess the effects of physical activity on neuropsychiatric disturbances in demented patients and on the mental burden of their caregivers. METHODS: Assisted by a public geriatric psychiatry clinical unit, we studied 59 patients with dementia. Patients were divided into three groups according to their diagnosis and level of physical activity. Data were assessed through a semi-structured interview. Patients were evaluated with the Neuropsychiatric Inventory, the Mini-Sleep Questionnaire and the Baecke Questionnaire. The data were statistically analyzed using the Mann-Whitney U test and linear regression, with the level of significance set at 5%. RESULTS: Patients with Alzheimer's or vascular dementia who engaged in physical activity had fewer neuropsychiatric symptoms than those who did not. When compared to the control group, the caregivers of patients with vascular dementia who engaged in physical activity had a reduced burden. CONCLUSION: The regular practice of physical activity seems to contribute to a reduction in neuropsychiatric symptoms in dementia patients and to attenuate the burden of the caregivers of those patients. PMID:21655755

  7. The influence of ethnicity and culture on dementia caregiving: a review of empirical studies on Chinese Americans.

    PubMed

    Sun, Fei; Ong, Rebecca; Burnette, Denise

    2012-02-01

    The purpose of this article is to pinpoint the cultural and ethnic influences on dementia caregiving in Chinese American families through a systemic review and analysis of published research findings. Eighteen publications on Chinese American dementia family caregivers published in peer-reviewed journals between 1990 and early 2011 were identified. Based on a systematic database search and review process, we found that caregivers' beliefs concerning dementia and the concept of family harmony as evidenced through the practice of filial piety are permeating cultural values, which together affect attitudes toward research and help-seeking behaviors (ie, seeking information on diagnosis and using formal services). There is also evidence to suggest that these cultural beliefs impinge on key elements of the caregiving process, including caregivers' appraisal of stress, coping strategies, and informal and formal support. The study concludes with recommendations for future research and practice with the Chinese American population.

  8. Technology-driven interventions for caregivers of persons with dementia: a systematic review.

    PubMed

    Godwin, Kyler M; Mills, Whitney L; Anderson, Jane A; Kunik, Mark E

    2013-05-01

    Caregiving for a person with dementia can lead to physical and psychological morbidity. Technology-driven interventions hold the promise of convenient, low-cost methods of delivering psychosocial interventions. This systematic review examined the efficacy of technology-driven interventions for caregivers of persons with dementia. A search of Ovid Medline, PsychInfo, and EBSCO from 1990 to May 2012 resulted in the identification of 295 articles. After removal of duplicates, 271 articles were reviewed, based on the abstract and title alone; 32 were relevant or could not be fully assessed without assessing the entire article. Eight fully satisfied the inclusion/exclusion criteria. Each of these had some positive findings. However, there was large variability in the content and delivery of the interventions and inconsistency in measurement and variability of outcomes. Future studies should employ randomized control trial methodology and measure outcomes with commonly used measures to ensure feasibility of comparisons across the studies.

  9. Northern Manhattan Hispanic Caregiver Intervention Effectiveness Study: protocol of a pragmatic randomised trial comparing the effectiveness of two established interventions for informal caregivers of persons with dementia

    PubMed Central

    Luchsinger, José A; Burgio, Louis; Mittelman, Mary; Dunner, Ilana; Levine, Jed A; Kong, Jian; Silver, Stephanie; Ramirez, Mildred; Teresi, Jeanne A

    2016-01-01

    Introduction The prevalence of dementia is increasing without a known cure, resulting in an increasing number of informal caregivers. Caring for a person with dementia results in increased stress and depressive symptoms. There are several behavioural interventions designed to alleviate stress and depressive symptoms in caregivers of persons with dementia with evidence of efficacy. Two of the best-known interventions are the New York University Caregiver Intervention (NYUCI) and the Resources for Enhancing Alzheimer's Caregivers Health (REACH). The effectiveness of the NYUCI and REACH has never been compared. There is also a paucity of data on which interventions are more effective in Hispanics in New York City. Thus, we proposed the Northern Manhattan Hispanic Caregiver intervention Effectiveness Study (NHiCE), a pragmatic clinical trial designed to compare the effectiveness of adaptations of the NYUCI and the REACH in informal Hispanic caregivers of persons with dementia in New York City. Methods and analysis NHiCE is a 6-month randomised controlled trial comparing the effectiveness of adaptations of the NYUCI and REACH among 200 Hispanic informal adult caregivers of persons with dementia. The planned number of sessions of the NYUCI and REACH are similar. The primary outcome measures are changes from baseline to 6 months in the Zarit Caregiver Burden Scale and Geriatric Depression Scale. Our primary approach to analyses will be intent-to-treat. The primary analyses will use mixed random effects models, and a full information maximum likelihood approach, with sensitivity analyses using generalised estimating equation. Ethics and dissemination NHiCE is approved by the Institutional Review Board of Columbia University Medical Center (protocol AAAM5150). A Data Safety Monitoring Board monitors the progress of the study. Dissemination will include reports of the characteristics of the study participants, as well as a report of the results of the clinical trial. Trial

  10. At the Crossroads: Development and Evaluation of a Dementia Caregiver Group Intervention to Assist in Driving Cessation

    ERIC Educational Resources Information Center

    Stern, Robert A.; D'Ambrosio, Lisa A.; Mohyde, Maureen; Carruth, Anastasia; Tracton-Bishop, Beth; Hunter, Jennifer C.; Daneshvar, Daniel H.; Coughlin, Joseph F.

    2008-01-01

    Deciding when an individual with dementia must reduce or stop driving can be a stressful issue for family caregivers. The purpose of this study was to develop a group intervention to assist these caregivers with driving issues and to provide a preliminary evaluation of the comparative effectiveness of this At the Crossroads intervention.…

  11. Stressors and Well-Being among Caregivers to Older Adults with Dementia: The In-Home versus Nursing Home Experience.

    ERIC Educational Resources Information Center

    Stephens, Mary Ann Parris; And Others

    1991-01-01

    Examined differences in stressors and well-being for caregivers who care for relative with dementia at home and those with relative in nursing home (n=120). Found no differences in depression or somatic complaints, but nursing home caregivers reported fewer social disruptions and more stressors resulting from activities of daily living assistance,…

  12. Burnout and Characteristics of Mental Health of Caregivers of Elderly Dementia Patients

    PubMed Central

    Kimura, Hiromi; Tamoto, Tomomi; Kanzaki, Naruyo; Shinchi, Koichi

    2011-01-01

    Objective: The purpose of this study was to clarify burnout and the characteristics of mental health of caregivers of elderly dementia patients, which have been little studied. Methods: The subjects of this study were 107 caregivers who were engaged in the care of dementia patients at 12 facilities in northern Kyushu. We examined age, sex, status of nursing-care related qualifications, years of working experience, physical health (Present state of health and Presence of perceived ill health), status at work (Problems at work and Job stress) and satisfaction with life using the Maslach Burnout Inventory (MBI) and WHO Subjective Well-Being Inventory (SUBI). The period of survey was five months, between June 1 and October 31, 2006. Results: The most severe level of burnout was found in 27.1% of the subject. When subjects were classified into the burnout and nonburnout groups, the burnout group represented 53.3% of the subjects. In a comparison of the scores of the SUBI subscales between the burnout and nonburnout group, significant differences were observed in almost all subscales without “Deficiency in Social Contacts” and “Social Support”. Conclusion: This study clarified that self-care of physical and mental health, and family support were very important in maintaining mental health and preventing burnout in caregivers of dementia patients. PMID:25648426

  13. The effectiveness of dyadic interventions for people with dementia and their caregivers.

    PubMed

    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.

  14. Physical activity program for patients with dementia and their relative caregivers: randomized clinical trial in Primary Health Care (AFISDEMyF study)

    PubMed Central

    2014-01-01

    Background The aging of the population has led to the increase of chronic diseases, especially dementia and cardiovascular diseases, and it has become necessary for their relatives to dedicate more time in caregiving. The objective in the first phase of this study is to evaluate the effectiveness of a Primary Health Care procedure to increase the physical activity of people with dementia and their relative caregivers. Also the effect on the cognitive state and cardiovascular risk will be assessed. Methods/Design Design: Clinical, multicentric and randomized trial. A simple random sampling to select 134 patients diagnosed with dementia will be carried out. After contacting their relatives, his/her participation in the trial will be requested. A basal assessment will be made and the participants will be asigned to control or intervention group (1:1). Variables: The main measure will be the assessment of physical activity (podometer and 7-PAR) in patients and caregivers. In patients with dementia: ADAS-cog, functional degree and cardiovascular risk. In caregivers: cardiovascular risk, general health and quality of life. Intervention: For 3 months, participants will receive instructions to do physical activity with an adapted program. This program will be designed and applied by Primary Health Care professionals in patients with dementia and their caregivers. The control group will receive regular care. Analysis: An intention-to-treat analysis will be carried out by comparing the observed differences between basal, 6 and 12 months measures. Change in the mean of daily steps assessed with the podometer and 7-PAR will be the main result. Discussion If the main hypothesis is confirmed, it could be useful to improve the cognitive state of patients with dementia, as well as the cardiovascular risk of all of them. The results can be good to improve technical features of the devices that register the physical activity in the patients with dementia, and it could facilitate

  15. Caregiver Person-Centeredness and Behavioral Symptoms in Nursing Home Residents With Dementia: A Timed-Event Sequential Analysis

    PubMed Central

    Gilmore-Bykovskyi, Andrea L.; Roberts, Tonya J.; Bowers, Barbara J.; Brown, Roger L.

    2015-01-01

    Purpose: Evidence suggests that person-centered caregiving approaches may reduce dementia-related behavioral symptoms; however, little is known about the sequential and temporal associations between specific caregiver actions and behavioral symptoms. The aim of this study was to identify sequential associations between caregiver person-centered actions, task-centered actions, and resident behavioral symptoms and the temporal variation within these associations. Design and Methods: Videorecorded observations of naturally occurring interactions (N = 33; 724min) between 12 nursing home (NH) residents with dementia and eight certified nursing assistants were coded for caregiver person-centered actions, task-centered actions, and resident behavioral symptoms and analyzed using timed-event sequential analysis. Results: Although caregiver actions were predominantly person-centered, we found that resident behavioral symptoms were significantly more likely to occur following task-centered caregiver actions than person-centered actions. Implications: Findings suggest that the person-centeredness of caregivers is sequentially and temporally related to behavioral symptoms in individuals with dementia. Additional research examining the temporal structure of these relationships may offer valuable insights into the utility of caregiver person-centeredness as a low-cost strategy for improving behavioral symptom management in the NH setting. PMID:26055782

  16. Family caregivers' subjective experiences of satisfaction in dementia care: aspects of burden, subjective health and sense of coherence.

    PubMed

    Andrén, Signe; Elmståhl, Sölve

    2005-06-01

    Family caregivers experience both positive and negative reactions in caregiving situations. There has been considerably less published about the positive aspects, however. The general aim of this study was to explore a previously developed instrument to study rewards gained by caregivers and to determine the factors associated with satisfaction in family members caring for patients with dementia living at home. The study group consisted of 153 such family members. Standardized interview schedules exploring different background characteristics, and instruments for assessment of the degree of dementia in the patients and the caregivers' total burden and degree of satisfaction were used. Factorial analysis of the Caregiver's Assessment of Satisfactions Index was performed and it became more specific for conditions of dementia when it was reduced. Stressors as measured by the Caregiver Burden scale and satisfaction can coexist and assess different aspects of the caregiver's situation. The caregiver can perceive both moderate burden and great satisfaction at the same time, and further studies may help to broaden our understanding of how we can reduce the degree of burden whilst increasing the sense of satisfaction.

  17. An occupational perspective of the lived experience of familial dementia caregivers: A thematic review of qualitative literature.

    PubMed

    Hooper, Emma K; Collins, Tracy

    2016-10-06

    Dementia caregiving is thought to have a negative impact on health and wellbeing. This critical review of qualitative literature explored the lived experience of familial dementia caregivers from an occupational therapy perspective. The method was informed by systematic review and qualitative research methodologies and was structured within the occupational dimensions framework of doing-being-becoming-belonging. A comprehensive search of major databases was undertaken which identified 484 studies on the topic; 14 met the inclusion criteria and were included in the review. Ten themes emerged within the doing-being-becoming-belonging framework from the analysis of the studies. The occupational participation of caregivers is conveyed within the 'doing' domain. Ways in which caregiving impacts upon opportunities for self-nurture are presented within the 'being' domain. The 'becoming' domain elucidates ways in which caregivers redefine themselves, their values and their priorities through their caregiving role. The 'belonging' domain depicts ways in which caregivers' connections with their care recipient and others are shaped over time. Practice implications for health and social care practitioners who work with familial dementia caregivers are presented in light of the findings.

  18. Emotional memory deficit and its psychophysiological correlate in family caregivers of patients with dementia.

    PubMed

    Palma, Kayla Araújo Ximenes Aguiar; Balardin, Joana Bisol; Vedana, Gustavo; de Lima Argimon, Irani Iracema; Luz, Clarice; Schröder, Nadja; Quevedo, João; Bromberg, Elke

    2011-01-01

    This study examined the cortisol secretion pattern and declarative memory performance of dementia caregivers. An illustrated story paradigm memory task was used to evaluate the effects of emotional arousal on memory and assess the caregivers' cognitive compensation capacity. Younger (n=19) and elderly (n=24) noncaregivers and elderly caregivers (n=14) took part in 2 experiments to elucidate the effects of aging (experiment 1) and chronic stress (experiment 2) on memory performance and cortisol levels. Each group was divided in 2 subgroups: one that was exposed to an emotionally neutral story, and one that was exposed to a similar, but emotionally arousing story. Participants completed a multiple-choice questionnaire in the test session. Salivary cortisol samples were collected at 8:00 AM, 4:00 PM, and 10:00 PM, 1 day after memory testing. Experiment 1 showed that, despite an age-related memory deficit, arousal manipulation produced a similar effect in both age groups. Experiment 2 showed that, in addition to the characteristic memory decline of aging, elderly caregivers did not benefit from emotionally arousing material as their noncaregiver counterparts did. This impairment correlated with elevated nighttime cortisol levels, indicating a potential worsening impact of caregiver burden on age-related cognitive decline.

  19. A pilot study of the effects of meditation on regional brain metabolism in distressed dementia caregivers

    PubMed Central

    Pomykala, Kelsey L; Silverman, Daniel HS; Geist, Cheri L; Voege, Patricia; Siddarth, Prabha; Nazarian, Nora; St Cyr, Natalie M; Khalsa, Dharma S; Lavretsky, Helen

    2013-01-01

    Aims Caregiver distress can affect mood and cognition. Meditation can be used to reduce stress. This pilot study explored whether yogic meditation could change regional cerebral metabolism in distressed caregivers. Methods Nine dementia caregivers were randomized to undergo meditation training compared with relaxation for 12 min per day for 8 weeks. Caregivers received neuropsychiatric assessments and brain FDG-PET scans at baseline and postintervention. Results The groups did not differ on measures of mood, mental and physical health, and burden at baseline and follow-up. When comparing the regional cerebral metabolism between groups, significant differences over time were found in the bilateral cerebellum (p < 0.0005), right inferior lateral anterior temporal (p < 0.0005), right inferior frontal (p = 0.001), left superior frontal (p = 0.001), left associative visual (p = 0.002) and right posterior cingulate (p = 0.002) cortices. Conclusion Meditation practice in distressed caregivers resulted in different patterns of regional cerebral metabolism from relaxation. These pilot results should be replicated in a larger study. PMID:23378856

  20. Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia Portal

    PubMed Central

    Marinova-Schmidt, Velislava; Setzer, Manuela; Kondylakis, Haridimos; Griebel, Lena; Sedlmayr, Martin; Graessel, Elmar; Maler, Juan Manuel; Kirn, Stefan; Kolominsky-Rabas, Peter L

    2016-01-01

    Background The European eHealthMonitor project (eHM) developed a user-sensitive and interactive Web portal for the dementia care setting called the eHM Dementia Portal (eHM-DP). It aims to provide targeted support for informal caregivers of persons with dementia and professionals. Objective The objective of this study was to assess the usefulness and impact of the eHM-DP service in the dementia care setting from two user perspectives: informal caregivers and professionals. Methods The evaluation study was conducted from June to September 2014 and followed a before-after, user-participatory, mixed-method design with questionnaires and interviews. The used intervention was the eHM-DP: an interactive Web portal for informal caregivers and professionals that was tested for a 12-week period. Primary outcomes for caregivers included empowerment, quality of life, caregiver burden, decision aid, as well as perceived usefulness and benefits of the eHM-DP. Primary outcomes for professionals involved decision aid, perceived usefulness, and benefits of the eHM-DP. Results A total of 25 informal caregivers and 6 professionals used the eHM-DP over the 12-week study period. Both professionals and informal caregivers indicated perceived benefits and support by the eHM-DP. In total, 65% (16/25) of informal caregivers would use the eHM-DP if they had access to it. Major perceived benefits were individualized information acquisition, improved interaction between informal caregivers and professionals, access to support from home, and empowerment in health-related decisions (PrepDM Score: 67.9). Professionals highlighted the improved treatment and care over the disease course (83%, 5/6) and improved health care access for people living in rural areas (67%, 4/6). However, there was no improvement in caregiver burden (Burden Scale for Family Caregivers) and quality of life (EuroQol-5D-5L) over the study period. Conclusions Our study provides insight into the different user perspectives

  1. Frankly, None of Us Know What Dementia Is: Dementia Caregiving Among Iranian Immigrants Living in Sweden.

    PubMed

    Antelius, Eleonor; Kiwi, Mahin

    2015-01-01

    In quite a short amount of time, Sweden has gone from being a relatively homogeneous society to a multicultural one, with a rapid expansion of immigrants having culturally and linguistically diverse (CALD) backgrounds growing old in Sweden. This is particularly interesting in relation to studying age-related dementia diseases. Research shows that not only do CALD persons with dementia diseases tend to mix languages, have difficulties with separation of languages, or revert to speaking only their native tongue as the disease progresses, but they also show tendencies to experience that they live in the cultural environment in which they were brought up, rather than in the current Swedish one. In this article, we explore findings in relation to one such CALD group in Sweden, Iranians. The article is empirically driven and based on data gathered in 2 separate settings with specific ethnocultural profiles, offering dementia care with Middle Eastern, Arab, and/or Persian profile. Observations were carried out in combination with semistructured in-depth interviews (n = 66). By using a combination of content and ethnographic analysis, 4 main findings related to ethnocultural dementia care were elucidated. These include (a) a wider recognition of people from different CALD backgrounds possibly having different perceptions of what dementia is, (b) a possibility that such ascribed meaning of dementia has a bearing on health maintenance and health-seeking behavior as well as the inclination to use formal services or not, (c) choosing to use formal service in the forms of ethnoculturally profiled dementia care facility seems to relate to being able to "live up to ideals of Iranian culture," and (d) "culture," however ambiguous and hotly debated a concept it is, appears to be a relevant aspect of people's lives, an aspect that is both acquired as well as ascribed to oneself and to others. As such, we argue that culture needs to be further addressed in relation to dementia care

  2. Dementia service centres in Austria: A comprehensive support and early detection model for persons with dementia and their caregivers – theoretical foundations and model description

    PubMed Central

    Span, Edith; Reisberg, Barry

    2015-01-01

    Despite the highly developed social services in Austria, the County of Upper Austria, one of the nine counties of Austria had only very limited specialized services for persons with dementia and their caregivers in 2001. Support groups existed in which the desire for more specialized services was voiced. In response to this situation, funding was received to develop a new structure for early disease detection and long term support for both the person with dementia and their caregivers. This article describes the development of the model of the Dementia Service Centres (DSCs) and the successes and difficulties encountered in the process of implementing the model in six different rural regions of Upper Austria. The DSC was described in the First Austrian Dementia Report as one of the potential service models for the future. PMID:24339114

  3. Maladaptive cognitions and physical health of the caregivers of dementia: An interpretative phenomenological analysis

    PubMed Central

    Ali, Sidra; Bokharey, Iram Z.

    2015-01-01

    The aim of the study was to conduct in-depth analyses of the lived experiences of the caregivers of dementia and their maladaptive thinking patterns and how their physical health was influenced and compromised. The main method used was interpretative phenomenological analysis and involved in-depth analysis of eight participants screened through homogenous purposive sampling. After taking written consent from the participants, semi-structured interviews were conducted to gather the data that were transcribed later on to carry out free textual analysis. The themes were generated from the transcripts through the funneling approach in order to arrive at the themes that were common, frequent, and reflected the experiences shared by the participants. The verification was done through peer review and rich thick description. The most significant themes regarding maladaptive cognitions were catastrophizing, overgeneralizing, and blaming, whereas fatigue and sleep disturbances were the most significant themes regarding physical health. The emergent themes point towards a need to devise indigenous therapeutic intervention for the caregivers of dementia in the Pakistani sociocultural context as the literature available on caregiving is quite scanty in our culture. PMID:26384522

  4. Demographic and socio-economic influences on community-based care and caregivers of people with dementia in China

    PubMed Central

    Lang, Linda; Clifford, Angela; Chen, Yang; Han, Thang S

    2016-01-01

    Background Dementia is a major public health challenge and China has the largest population with dementia in the world. However, dementia care and caregivers for Chinese are less investigated. Objectives and design To evaluate demographic and socio-economic influences on dementia care, management patterns and caregiver burden in a household community-dwelling-based survey, using participants’ care receipts and Zarit scale. Setting and participants Rural and urban communities across six provinces of China comprising 4837 residents aged ≥60 years, in whom 398 had dementia and 1312 non-dementia diseases. Results People with dementia were less likely to receive care if they were living in rural compared to urban areas (Odd ratio (OR) = 0.20; 95%CI: 0.10–0.41), having education level below compared to above secondary school (OR = 0.24; 95%CI: 0.08–0.70), manual labourer compared to non-manual workers (OR = 0.27; 95%CI: 0.13–0.55), having personal annual income below RMB 10,000 yuan (£1000) compared to above (OR = 0.37; 95%CI: 0.13–0.74) or having four or more than compared to less four children (OR = 0.52; 95%CI: 0.27–1.00). Caregivers for dementia compared with those for non-dementia diseases were younger and more likely to be patients’ children or children in-law, had lower education and spent more caring time. Caregiver burden increased with low education, cutback on work and caring for patients who were younger or living in rural areas, and this caregiver burden was three-fold greater than that for non-dementia diseases. Conclusions There are a number of inequalities in dementia care and caregiver burden in China. Reducing the socio-economic gap and increasing education may improve community care for people with dementia and preserve caregivers’ well-being. PMID:27478589

  5. Behavioral activation for dementia caregivers: scheduling pleasant events and enhancing communications

    PubMed Central

    Au, Alma; Gallagher-Thompson, Dolores; Wong, Meng-Kong; Leung, Jess; Chan, Wai-Chi; Chan, Chun Chung; Lu, Hui-Jing; Lai, Man Kin; Chan, Kevin

    2015-01-01

    Background Dementia caregiving is often associated with increase in depressive symptoms and strained relationships. This study tested whether telephone-delivered psychoeducation combined with an enhanced behavioral activation (BA) module had a better effect on the well-being of Alzheimer’s caregivers than psychoeducation alone. The focus is on enhancing the competent use of coping skills via BA. The program is delivered by telephone to increase accessibility and sustainability for caregivers. Senior citizens are trained as paraprofessionals to deliver the BA module to increase the potential for sustainability of the program. Methods and subjects The study compared two telephone interventions using a 4-month longitudinal randomized controlled trial. For the first 4 weeks, all participants received the same psychoeducation program via telephone. Then for the following 4 months, eight biweekly telephone follow-up calls were carried out. For these eight follow-up calls, participants were randomized into either one of the two following groups with different conditions. For the psychoeducation with BA (PsyED-BA) group, participants received eight biweekly sessions of BA practice focused on pleasant event scheduling and improving communications. For the psychoeducation only (PsyED only) group, participants received eight biweekly sessions of general discussion of psychoeducation and related information. A total of 62 family caregivers of persons living with dementia were recruited and 59 (29 in the PsyED-BA group and 30 in the PsyED only group) completed the whole study. Results As compared to the group with psychoeducation and discussion, the group with enhanced BA had decreased levels of depressive symptoms. The study had a low attrition rate. Conclusion Results suggested that competence-based training could be effectively administered through the telephone with the help of senior citizens trained and engaged as paraprofessionals. Results contribute to the present

  6. Virtually supportive: A feasibility pilot study of an online support group for dementia caregivers in a 3D virtual environment

    PubMed Central

    O’Connor, Mary-Frances; Arizmendi, Brian J.; Kaszniak, Alfred W.

    2014-01-01

    Caregiver support groups effectively reduce stress from caring for someone with dementia. These same demands can prevent participation in a group. The present feasibility study investigated a virtual online caregiver support group to bring the support group into the home. While online groups have been shown to be helpful, submissions to a message board (vs. live conversation) can feel impersonal. By using avatars, participants interacted via real-time chat in a virtual environment in an 8-week support group. Data indicated lower levels of perceived stress, depression and loneliness across participants. Importantly, satisfaction reports also indicate that caregivers overcame the barriers to participation, and had a strong sense of the group’s presence. This study provides the framework for an accessible and low cost online support group for a dementia caregiver. The study demonstrates the feasibility of interactive group in a virtual environment for engaging members in meaningful interaction. PMID:24984911

  7. The effects of driving cessation on the elderly with dementia and their caregivers.

    PubMed

    Taylor, B D; Tripodes, S

    2001-07-01

    This research explores how the loss of driving privileges by impaired drivers affects households. The particular focus is on the travel behavior and preceptions of people living in households where an elderly driver has had his or her license revoked due to Alzheimer's disease or a related dementia. The data for this analysis were drawn from a 1996 survey of households in California which queried the caregivers of people with dementia on how the former drivers access necessary destinations once they can no longer drive, and on the difficulties faced by other household members in seeking alternative means of transportation. After losing their license, the vast majority of people surveyed depended on informal support systems for transportation, such as rides from family and friends. Although such arrangements were not reported to be a problem for the majority of households, certain groups of non-drivers reported difficulty accessing services, particularly social and recreational destinations. The most commonly reported problem was a lack of available licensed drivers to chauffeur non-drivers. Importantly, no increase was observed in the number of people walking, using public transit, taxis, or van services following license revocation. People who did not live with at least one licensed driver and those who were younger and healthier reported the greatest mismatch between their need and desire to travel and the availability of transportation. In addition, some caregivers reported that they frequently missed work or stopped working entirely in order to care for and chauffeur people in the former drivers' household. Overall, these findings reinforce the importance of both developing transportation policies to support the functioning of informal transportation structures and in improving the range of alternative transportation options for those individuals with particular disabilities--like dementia--who are not well served by either informal arrangements or by formal

  8. Effectiveness of a Fotonovela for Reducing Depression and Stress in Latino Dementia Family Caregivers

    PubMed Central

    Gallagher-Thompson, Dolores; Tzuang, Marian; Hinton, Ladson; Alvarez, Paula; Rengifo, Johanna; Valverde, Irene; Chen, Nancy; Emrani, Tara; Thompson, Larry W.

    2014-01-01

    The clinical need to address stress and depression in Latino dementia caregivers (CGs) combined with low health literacy and less accurate knowledge of dementia motivated the development of a pictorial tool (called a fotonovela {FN}) to teach a) coping skills for CG stress, b) self -assessment of depression, and c) encourage improved utilization of available resources. To test the effectiveness of the FN, 110 of 147 Latino CGs, who were randomly assigned to the Fotonovela Condition (FNC) or the Usual Information Condition (UIC), were included in the final analyses. Self-report measures were given at baseline and post intervention. Results showed that FNC CGs demonstrated significantly greater reductions in level of depressive symptoms than UIC CGs. A significant decrease in level of stress due to memory and behavioral problems exhibited by their loved ones was similar in both groups. The FNC CGs reported that the FN was more helpful and that they referred to it more often than the UIC CGs did with regard to the informational materials they were provided about dementia. In conclusion, a culturally tailored FN can be an effective tool for Latino CGs given their high unmet needs for assistance and various barriers in accessing resources. PMID:25590939

  9. Translation of a Dementia Caregiver Intervention for Delivery in Homecare as a Reimbursable Medicare Service: Outcomes and Lessons Learned

    ERIC Educational Resources Information Center

    Gitlin, Laura N.; Jacobs, Mimi; Earland, Tracey Vause

    2010-01-01

    Purpose: Families of dementia patients receiving skilled homecare do not receive supportive services. We evaluated whether a proven intervention, Environmental Skill-building Program (ESP), which reduces caregiver burden and enhances skills managing patient functioning, can be integrated into homecare practices of occupational therapists (OTs) and…

  10. Grief and Personal Growth Experience of Spouses and Adult-Child Caregivers of Individuals with Alzheimer's Disease and Related Dementias

    ERIC Educational Resources Information Center

    Ott, Carol H.; Sanders, Sara; Kelber, Sheryl T.

    2007-01-01

    Purpose: The purpose of this study was to describe the grief and personal growth experience of spouses and adult children of individuals with Alzheimer's disease and related dementias and the factors contributing to these experiences. Design and Methods: We used a modification of the Marwit-Meuser-Sanders Caregiver Grief model to examine the…

  11. Partners in Caregiving in a Special Care Environment: Cooperative Communication between Staff and Families on Dementia Units

    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…

  12. Making sense of behavioral disturbances in persons with dementia: Latino family caregiver attributions of Neuropsychiatric Inventory domains

    PubMed Central

    Hinton, Ladson; Chambers, Darin; Velásquez, Alexandra

    2010-01-01

    The purpose of this study was to describe the nature and frequency of Latino family caregiver attributions for dementia-related neuropsychiatric symptoms. This is a cross-sectional study conducted in the Sacramento, California area. Participants were 30 Latino family caregivers of community-dwelling Latino elderly meeting research criteria for dementia who were selected from an ongoing cohort study of older Latinos (Sacramento Area Latino Study on Aging). Open-ended probes were used to elicit caregiver attribution for each symptom domain of the Neuropsychiatric Inventory (NPI). Across the 30 caregivers, 121 explanations for neuropsychiatric domains were present. Content analysis of these explanations revealed seven different attribution categories (i.e. Alzheimer’s disease, interpersonal problems, other medical conditions, personality, mental, aging, and genetics). Overall, Alzheimer’s disease was the most frequent attribution category but accounted for less than 30% of the total attributions. In conclusion, this study found that Latino caregivers were more likely to attribute neuropsychiatric symptoms to causes other than Alzheimer’s disease or a related dementia. PMID:19568150

  13. Burden of care, social support, and sense of coherence in elderly caregivers living with individuals with symptoms of dementia.

    PubMed

    Stensletten, Kari; Bruvik, Frøydis; Espehaug, Birgitte; Drageset, Jorunn

    2016-11-01

    Family members are often the care providers of individuals with dementia, and it is assumed that the need for this will increase. There has been little research into the association between the burden of care and the caregiver's sense of coherence or receipt of social support. This study examined the relationship between the social support subdimensions and sense of coherence and the burden of care among older people giving care to a partner with dementia. The study was a cross-sectional observation study of 97 individuals, ≥65 years old and living with a partner who had symptoms of dementia. We used the Informant Questionnaire on Cognitive Decline in the Elderly, the Relative Stress Scale, the Social Provisions Scale, the Sense of Coherence Scale, and a questionnaire on sociodemographic variables. We used multiple regression analysis in a general linear model procedure. We defined statistical significance as p < 0.05. With adjustments for sociodemographic variables, the association with burden of care was statistically significant for the subdimension attachment (p < 0.01) and for sense of coherence (p < 0.001). The burden of care was associated with attachment and with sense of coherence. Community nurses and other health professionals should take necessary action to strengthen attachment and sense of coherence among the caregivers of people with dementia. Qualitative studies could provide deeper understanding of the variation informal caregivers experience when living together with their partner with dementia.

  14. Tailored Lighting Intervention for Persons with Dementia and Caregivers Living at Home

    PubMed Central

    Figueiro, Mariana G.; Hunter, Claudia M.; Higgins, Patricia; Hornick, Thomas; Jones, Geoffrey E.; Plitnick, Barbara; Brons, Jennifer; Rea, Mark S.

    2016-01-01

    Objectives Light therapy has shown promise as a nonpharmacological treatment to help regulate abnormal sleep-wake patterns and associated behavioral issues prevalent among individuals diagnosed with Alzheimer’s disease and related dementia (ADRD). The present study investigated the effectiveness of a lighting intervention designed to increase circadian stimulation during the day using light sources that have high short-wavelength content and high light output. Methods Thirty-five persons with ADRD and 34 caregivers completed the 11-week study. During week 1, subjective questionnaires were administered to the study participants. During week 2, baseline data were collected using Daysimeters and actigraphs. Researchers installed the lighting during week 3, followed by 4 weeks of the tailored lighting intervention. During the last week of the lighting intervention, Daysimeter, actigraph and questionnaire data were again collected. Three weeks after the lighting intervention was removed, a third data collection (post-intervention assessment) was performed. Results The lighting intervention significantly increased circadian entrainment, as measured by phasor magnitude and sleep efficiency, as measured by actigraphy data, and significantly reduced symptoms of depression in the participants with ADRD. The caregivers also exhibited an increase in circadian entrainment during the lighting intervention; a seasonal effect of greater sleep efficiency and longer sleep duration was also found for caregivers. Conclusions An ambient lighting intervention designed to increase daytime circadian stimulation can be used to increase sleep efficiency in persons with ADRD and their caregivers, and may also be effective for other populations such as healthy older adults with sleep problems, adolescents, and veterans with traumatic brain injury. PMID:27066526

  15. Processes of user participation among formal and family caregivers in home-based care for persons with dementia.

    PubMed

    Larsen, Lill Sverresdatter; Normann, Hans Ketil; Hamran, Torunn

    2017-02-01

    Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was 'negotiating participation in decisions'. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients' legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

  16. Delirium superimposed on dementia: a quantitative and qualitative evaluation of informal caregivers and health care staff experience

    PubMed Central

    Morandi, Alessandro; Lucchi, Elena; Turco, Renato; Morghen, Sara; Guerini, Fabio; Santi, Rossana; Gentile, Simona; Meagher, David; Voyer, Philippe; Fick, Donna M.; Schmitt, Eva M.; Inouye, Sharon K.; Trabucchi, Marco; Bellelli, Giuseppe

    2015-01-01

    Objective Delirium superimposed on dementia (DSD) is common and potentially distressing for patients, caregivers, and health care staff. We quantitatively and qualitatively assessed the experience of informal caregiver and staff (staff nurses, nurse aides, physical therapists) caring for patients with DSD. Methods Caregivers’ and staff experience was evaluated three days after DSD resolution (T0) with a standardized questionnaire (quantitative interview) and open-ended questions (qualitative interview); caregivers were also evaluated at 1-month follow-up (T1). Results A total of 74 subjects were included; 33 caregivers and 41 health care staff (8 staff nurses, 20 physical therapists, 13 staff nurse aides/health care assistants). Overall, at both T0 and T1, the distress level was moderate among caregivers and mild among health care staff. Caregivers reported, at both T0 and T1, higher distress related to deficits of sustained attention and orientation, hypokinesia/psychomotor retardation, incoherence and delusions. The distress of health care staff related to each specific item of the Delirium-O-Meter was relatively low except for the physical therapists who reported higher level of distress on deficits of sustained/shifting attention and orientation, apathy, hypokinesia/psychomotor retardation, incoherence, delusion, hallucinations, anxiety/fear. The qualitative evaluation identified important categories of caregivers ‘and staff feelings related to the delirium experience. Conclusions This study provides information on the implication of the experience of delirium on caregivers and staff. The distress related to DSD underlines the importance of providing continuous training, support and experience for both the caregivers and health care staff to improve the care of patients with delirium superimposed on dementia. PMID:26286892

  17. Family Physician–Case Manager Collaboration and Needs of Patients With Dementia and Their Caregivers: A Systematic Mixed Studies Review

    PubMed Central

    Khanassov, Vladimir; Vedel, Isabelle

    2016-01-01

    PURPOSE Dementia case management (CM) in primary care is a complex intervention aimed at identifying the various needs of patients with dementia and their caregivers, as well as the organization and coordination of care. A key element of CM is the collaboration of family physicians with case managers. We conducted a systematic mixed-studies review to identify the needs of the patient-caregiver dyad and the effects of CM. METHODS We searched MEDLINE, PsycINFO, and EMBASE up to October 2014, regardless of the study design. Our main outcomes were needs of patients and their caregivers and the effects of CM on these needs. We used narrative syntheses to develop a taxonomy of needs and to describe the effects of CM on those needs. We used meta-analysis to calculate the prevalence of needs and the standardized mean differences to evaluate the effects of CM on the needs identified. RESULTS Fifty-four studies were included. We identified needs of the patient-caregiver dyad and needs of the patient and caregiver individually. CM addressed the majority of the identified needs. Still, some very common needs (eg, early diagnosis) are overlooked while other needs (eg, education on the disease) are well addressed. Fully establishing the value of CM is difficult given the small number of studies of CM in primary care. CONCLUSIONS There is good evidence that case managers, in collaboration with family physicians, have a pivotal role in addressing the needs of the patient-caregiver dyad. PMID:26951593

  18. Home-based exercise and support programme for people with dementia and their caregivers: study protocol of a randomised controlled trial

    PubMed Central

    2011-01-01

    Background Dementia affects the mood of people with dementia but also of their caregivers. In the coming years, the number of people with dementia will increase worldwide and most of them will continue to live in the community as long as possible. Home-based psychosocial interventions reducing the depressive symptoms of both people with dementia and their caregivers in their own home are highly needed. Methods/Design This manuscript describes the design of a Randomised Controlled Trial (RCT) of the effects of a home-based exercise and support programme for people with dementia and their caregivers. The aim is to randomly assign 156 dyads (caregiver and dementia diagnosed person) to an intervention group or a comparison group. The experimental group receives a home programme in which exercise and support for the people with dementia and their caregivers are combined and integrated. The comparison group receives a minimal intervention. Primary outcomes are physical health (people with dementia) and mood (people with dementia and caregivers). In addition, to get more insight in the working components of the intervention and the impact of the intervention on the relationship of the dyads a qualitative sub-study is carried out. Discussion This study aims to contribute to an evidence-based treatment to reduce depressive symptoms among people with dementia and their caregivers independently living in the community. Trial Registration The study has been registered at the Netherlands National Trial Register (NTR), which is connected to the International Clinical Trials Registry Platform of the WHO. Trial number: NTR1802. PMID:22117691

  19. Health Literacy Needs Related to Incontinence and Skin Damage among Family and Friend Caregivers of Individuals with Dementia

    PubMed Central

    Rolnick, Cheri; Jackson, Jody; Arntson, Casey; Mullins, Jean; Hepburn, Kenneth

    2013-01-01

    Purpose The purpose of this study was to describe health literacy needs related to incontinence and skin care among family or friend caregivers of individuals with Alzheimer’s disease and develop supportive and educational materials that address these needs. Design Descriptive Subjects and Settings The sample included 48 family/friend adult caregivers of individuals who had advanced dementia. Caregivers were spouses (44%), daughters (31%) or extended family members/friends (25%) recruited from community-based agencies, aged 64 (14) years (mean (SD)), and 75% female. Nearly half (48%) had a racially or ethnically diverse background. Methods Focus groups, interviews, and written surveys were conducted to assess health literacy needs of AD caregivers related to incontinence and skin care; verbal responses were audiotaped, transcribed, and summarized. To address these needs, a set of educational and supportive materials were developed whose content was directed by caregiver responses and supported by a literature review of current evidence and consultation with clinical and research experts. Study procedures were guided by advisory committee of AD caregivers. Results Caregivers had numerous health literacy needs related to incontinence and skin care; areas of need were categorized into knowledge, skills, and attitudes. Caregivers expressed a need to validate the health literacy they possessed. Fourteen educational and supportive documents were developed to address these needs. Conclusion Materials developed in this study are suitable to incorporate into interventions that support caregivers of persons with Alzheimer’s disease. They offer the potential to raise health literacy and care capacity of caregivers, increase communication with healthcare providers, and improve health outcomes of care recipients. PMID:24448620

  20. Structured interviews examining the burden, coping, self-efficacy, and quality of life among family caregivers of persons with dementia in Singapore.

    PubMed

    Tay, Kay Chai Peter; Seow, Chuen Chai Dennis; Xiao, Chunxiang; Lee, Hui Min Julian; Chiu, Helen F K; Chan, Sally Wai-Chi

    2016-03-01

    Dementia is a global health issue and the effects on caregivers are substantial. The study aimed to examine the associations of burden, coping, self-efficacy with quality of life among family caregivers of persons with dementia in Singapore. Structured interviews were conducted in a convenience sample of 84 family caregivers caring and seeking clinical care for the persons with dementia in an outpatient clinic of a public hospital in Singapore. The outcome measures included the Family Burden Interview Schedule, Family Crisis Oriented Personal Evaluation Scale, General Perceived Self-Efficacy Scale, and World Health Organization Quality of Life Scale - Brief Version. In general, significant correlations were observed between the quality of life scores with coping strategy and family burden scores, but not between the coping strategy and family burden scores. Compared to demographic factors such as caregiver age and household income, psychosocial factors including family burden, coping strategies, and self-efficacy demonstrated greater association with quality of life in the participants. However, the dynamics of these associations will change with an increasing population of persons with dementia, decreasing nuclear family size, and predicted changes in family living arrangements for the persons with dementia in future. As such, it necessitates continuous study examining the needs and concerns of family caregivers and the relevance of ongoing interventions specific to caregivers of persons with dementia.

  1. With Love from Me to Me: Using Songwriting to Teach Coping Skills to Caregivers of Those with Alzheimer's and Other Dementias

    ERIC Educational Resources Information Center

    Klein, Claire M.; Silverman, Michael J.

    2012-01-01

    This pilot intervention compared the effects of songwriting and discussion as methods for teaching self-care to caregivers of those with dementia. The investigator led a psychoeducational discussion and a songwriting intervention with a group of caregivers, focusing on self-care. Participants answered two open-ended questions that were analyzed by…

  2. UnderstAID, an ICT Platform to Help Informal Caregivers of People with Dementia: A Pilot Randomized Controlled Study.

    PubMed

    Núñez-Naveira, Laura; Alonso-Búa, Begoña; de Labra, Carmen; Gregersen, Rikke; Maibom, Kirsten; Mojs, Ewa; Krawczyk-Wasielewska, Agnieszka; Millán-Calenti, José Carlos

    2016-01-01

    Information and communications technology (ICT) could support ambient assisted living (AAL) based interventions to provide support to informal caregivers of people with dementia, especially when they need to cope with their feelings of overburden or isolation. An e-learning platform (understAID application) was tested by informal caregivers from Denmark, Poland, and Spain to explore the technical and the pedagogical specifications, as well as evaluating the impact of its use on the psychological status of the participants. 61 informal caregivers completed the study taking part in the experimental (n = 30) or control (n = 31) groups. 33.3% of the caregivers were satisfied with the application and around 50% of the participants assessed it as technically and pedagogically acceptable. After using understAID the caregivers in the experimental group significantly decreased their depressive symptomatology according to the Center for Epidemiologic Studies Depression scale, but a possible benefit on their feelings of competence and satisfaction with the caring experience was also observed. The low scores obtained for satisfaction were highlighting issues that need to be modified to meet the informal caregivers' needs in national, social, and cultural context. Some possible biases are also considered and discussed to be taken into account in future improvements of understAID application.

  3. UnderstAID, an ICT Platform to Help Informal Caregivers of People with Dementia: A Pilot Randomized Controlled Study

    PubMed Central

    Alonso-Búa, Begoña; de Labra, Carmen; Gregersen, Rikke; Maibom, Kirsten

    2016-01-01

    Information and communications technology (ICT) could support ambient assisted living (AAL) based interventions to provide support to informal caregivers of people with dementia, especially when they need to cope with their feelings of overburden or isolation. An e-learning platform (understAID application) was tested by informal caregivers from Denmark, Poland, and Spain to explore the technical and the pedagogical specifications, as well as evaluating the impact of its use on the psychological status of the participants. 61 informal caregivers completed the study taking part in the experimental (n = 30) or control (n = 31) groups. 33.3% of the caregivers were satisfied with the application and around 50% of the participants assessed it as technically and pedagogically acceptable. After using understAID the caregivers in the experimental group significantly decreased their depressive symptomatology according to the Center for Epidemiologic Studies Depression scale, but a possible benefit on their feelings of competence and satisfaction with the caring experience was also observed. The low scores obtained for satisfaction were highlighting issues that need to be modified to meet the informal caregivers' needs in national, social, and cultural context. Some possible biases are also considered and discussed to be taken into account in future improvements of understAID application. PMID:28116300

  4. "Learning to Become a Family Caregiver" Efficacy of an Intervention Program for Caregivers Following Diagnosis of Dementia in a Relative

    ERIC Educational Resources Information Center

    Ducharme, Francine C.; Levesque, Louise L.; Lachance, Lise M.; Kergoat, Marie-Jeanne; Legault, Alain J.; Beaudet, Line M.; Zarit, Steven H.

    2011-01-01

    Purpose: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Design and Methods: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a…

  5. The experience of burnout among home caregivers of patients with dementia: relations to depression and quality of life.

    PubMed

    Takai, M; Takahashi, M; Iwamitsu, Y; Ando, N; Okazaki, S; Nakajima, K; Oishi, S; Miyaoka, H

    2009-01-01

    Caregivers of patients with dementia often experience chronic and emotional strains, which may lead to emotional exhaustion and burnout. The objective of this study was to examine the relationships between burnout, depression, and quality of life in home caregivers of patients with dementia. The participants were 84 home caregivers (39 male; 45 female), and they were asked to complete three questionnaires: the Beck Depression Inventory Second Edition (BDI-II), the WHO Quality of Life 26 (WHO-QOL26), and the Pines Burnout Measure (BM). Results from a bivariate correlation showed that BM scores significantly correlated with the scores on BDI-II and WHO-QOL26. Results from ANOVA comparing the level of burnout with the scores on BDI-II and WHO-QOL26 revealed that there were differences between the burnout groups and the scores on BDI-II and WHO-QOL26. The higher levels of burnout were found to correspond to higher levels of depressive symptoms and lower QOL. These findings suggest that caregiver intervention to reduce burnout might benefit from strategies to reduce depression and increase QOL.

  6. Relationship between first treatment contact and supernatural beliefs in caregivers of patients with schizophrenia.

    PubMed

    Grover, S; Nebhinani, N; Chakrabarti, S; Shah, R; Avasthi, A

    2014-06-01

    OBJECTIVE. To explore the relationship between attribution of symptoms to supernatural beliefs and first treatment contact in caregivers of patients with schizophrenia attending a tertiary care hospital located in North India. METHODS. A total of 122 caregivers (aged ≥ 18 years, staying with patient ≥ 1 year and involved in patients' care) of consecutive patients with diagnosis of schizophrenia (according to the ICD-10) were evaluated for their supernatural beliefs and first treatment contact. RESULTS. The first treatment contact was a government or private psychiatrist in slightly more than half (53.3%) of the patients, while it was faith healers in 23.8% of the patients. Around three quarters (74.6%) of the caregivers attributed patients' symptoms to ≥ 1 supernatural belief (like sorcery / witchcraft, ghosts, spirit intrusion, divine wrath, planetary influences, evil spirits, and bad deeds in previous life) and more than half (57.4%) of the caregivers attributed patients' symptoms to > 1 supernatural belief. It was observed that those who contacted faith healers for their patients' treatment had significantly higher attribution of the symptoms to supernatural causes. CONCLUSIONS. Supernatural beliefs were common in caregivers of patients with schizophrenia and the majority attributed their patients' symptoms to these beliefs. It signifies an urgent need for mental health literacy in India.

  7. Comparing the Experiences of Black and White Caregivers of Dementia Patients.

    ERIC Educational Resources Information Center

    Cox, Carole

    1995-01-01

    Using a conceptual stress development model that treats informal supports and competency as potential mediators, examined outcomes of caregiving in samples of black and white caregivers. A perceived lack of informal supports and a sense of incompetency exacerbated stress among black caregivers but had no effects among the white caregivers. (RJM)

  8. Predictors of Quality of Life Ratings for Persons with Dementia Simultaneously Reported by Patients and their Caregivers: The Cache County (Utah) Study

    PubMed Central

    Buckley, Trevor; Fauth, Elizabeth B.; Morrison, Ann; Tschanz, JoAnn; Rabins, Peter V.; Piercy, Kathleen W.; Norton, Maria; Lyketsos, Constantine

    2012-01-01

    Background Quality of Life (QOL) is frequently assessed in persons with dementia (PWD) via self- and/or proxy-report. Determinants of QOL ratings are multi-dimensional and may differ between patients and caregiver proxies. This study compares self-report and proxy QOL ratings in a population-based study of PWD and their caregivers, and examined the extent to which discrepancies in reports were associated with characteristics of the PWD. Methods The sample consisted of 246 patient/caregiver dyads from the initial visit of the Cache County Dementia Progression Study, with both members of the dyad rating PWD QOL. PWD age, gender, cognitive impairment (Mini-Mental State Exam), neuropsychiatric symptoms (Neuropsychiatric Inventory; NPI), dementia severity (Clinical Dementia Rating), medical comorbidities (General Medical Health Rating), and functional impairment (Dementia Severity Rating Scale) were examined as correlates of self- and proxy-reported QOL ratings and the differences between the QOL reports. Results Self- and proxy-reported PWD QOL ratings were only modestly correlated. Medical comorbidity was associated with self-report whereas NPI was associated with proxy-report. Dementia severity was associated with discrepancies in self- and proxy-report, with worse patient cognition associated with poorer proxy-reported QOL ratings. Conclusions PWD self- and proxy-reported QOL ratings are associated with different variables. Discrepancies between PWD and caregiver perceptions of PWD QOL should be recognized, particularly in cases of more severe dementia. PMID:22414494

  9. “The Right Way at the Right Time”: Insights on the Uptake of Falls Prevention Strategies from People with Dementia and Their Caregivers

    PubMed Central

    Meyer, Claudia; Dow, Briony; Hill, Keith D.; Tinney, Jean; Hill, Sophie

    2016-01-01

    Strong evidence exists for effective falls prevention strategies for community-dwelling older people. Understanding the translation of these strategies into practice for people with dementia has had limited research focus. People with dementia desire to have their voice heard, to engage meaningfully in the health-care decision-making process, making it a priority for researchers and practitioners to better understand how to engage them in this process. This paper reports on the qualitative aspects of a series of studies, which aimed to identify the views of people with dementia and their caregivers regarding perceptions of falls prevention and the successes and challenges of adopting falls prevention strategies. Twenty five people with dementia and their caregivers were interviewed in their homes at baseline, and 24 caregivers and 16 people with dementia were interviewed at completion of a 6-month individualized falls prevention intervention. Interviews were audio-recorded, transcribed verbatim, and thematically analyzed. Five themes were identified at baseline: perceptions of falls; caregivers navigating the new and the unpredictable; recognition of decline; health services – the need for an appropriate message; and negotiating respectful relationships. At 6 months, caregivers and people with dementia decided on “what we need to know” with firm views that the information regarding falls risk reduction needed to be in “the right way … at the right time.” Rather than caregivers and people with dementia being only recipients of knowledge, they felt they were “more than just empty vessels to be filled” drawing on a “variety of resources” within their circle of influence to be able to positively “adapt to change.” The voices of people with dementia and their caregivers add an important dimension to understanding the translation of falls prevention knowledge for this population. Insights from this study will enable community care health

  10. Re-examining the relationships among dementia, stigma, and aging in immigrant Chinese and Vietnamese family caregivers

    PubMed Central

    Liu, Dandan; Hinton, Ladson; Tran, Cindy; Hinton, Devon; Barker, Judith C.

    2010-01-01

    Prior literature emphasizes that Asian Americans with dementia may be particularly vulnerable to the stigma of chronic mental illness. However, there is a dearth of empirical research to support this claim. This study examines the relationship of stigma and dementia in 32 qualitative interviews with Chinese and Vietnamese family caregivers. Stigma was a common theme in the interviews (91%). Further analysis of stigma revealed two sources: chronic mental illness stigma and stigma reflecting negative stereotypes of aging or the aged. Chinese and Vietnamese cultural views of normal aging are not a unitary category but accommodate different trajectories of aging, some more and some less desired. When applied to persons with dementia, a “normalized” but negative trajectory of aging carried with it significant stigma that was distinct from but in addition to the stigma of chronic and severe mental illness. Older Chinese and Vietnamese with dementia are thus at risk of experiencing multiple stigmas that include but go beyond the stigma associated with chronic and severe mental illness. PMID:18665444

  11. A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at Home on caregiver outcomes

    PubMed Central

    Tanner, Jeremy A; Black, Betty S; Johnston, Deirdre; Hess, Edward; Leoutsakos, Jeannie-Marie; Gitlin, Laura N; Rabins, Peter V; Lyketsos, Constantine; Samus, Quincy M

    2014-01-01

    Objectives To assess whether MIND at Home, a community-based, multicomponent, care coordination intervention, reduces unmet caregiving needs and burden in informal caregivers of persons with memory disorders. Design 18-month randomized controlled trial of 289 community-living care recipient (CR)/caregiver dyads. Setting 28 postal code areas of Baltimore, MD. Participants Informal caregivers (i.e., an unpaid individual who is regularly relied on by the CR for assistance). Intervention All dyads and the CR's primary care physician received the written needs assessment results and intervention recommendations. Intervention dyads then received an 18-month care coordination intervention delivered by non-clinical community-workers to address unmet care needs through individualized care planning; referral and linkage to dementia services; provision of caregiver dementia education and skill building strategies; and care progress monitoring by an interdisciplinary team. Measurements Primary outcome was total percent of unmet caregiver needs at 18 months. Secondary outcomes included objective and subjective caregiver burden measures, quality of life (QOL), and depression. Results Total percent of unmet caregiver needs declined in both groups from baseline to 18 months, but there was no statistically significant between-group difference. There were no significant group differences in most caregiver burden measures, depression, or QOL. There was a potentially clinically- relevant reduction in self-reported number of hours caregivers spent with the CR for MIND participants compared with controls. Conclusions No statistically significant impacts on caregiver outcomes were found after multiple comparison adjustments. Yet, MIND appeared to have had a modest, and clinically-meaningful, impact on informal caregiver time spent with CRs. PMID:25260557

  12. Influence of neuroticism, ethnicity, familism, and social support on perceived burden in dementia caregivers: pilot test of the transactional stress and social support model.

    PubMed

    Shurgot, Gia Robinson; Knight, Bob G

    2005-11-01

    In this study we assessed the new transactional stress and social support model, postulating the role of neuroticism, ethnicity, familism, and social support in perceived burden in dementia caregivers. We used a convenience sample (N=77) of African American and White dementia caregivers. Results substantiated interrelationships among social support variables, and the influence of perceived positive social support on burden. Neuroticism was related to the perception of positive social support and burden. Results corroborated the model, focusing on neuroticism and quality of social support in modeling perceived burden in family caregivers. Findings call attention to the role of presumably long-standing individual differences in neuroticism that influence caregiver appraisals of stress and social support.

  13. Cognitive Impairment, Alzheimer's Disease, and Other Dementias in the Lives of Lesbian, Gay, Bisexual and Transgender (LGBT) Older Adults and Their Caregivers.

    PubMed

    Fredriksen-Goldsen, Karen I; Jen, Sarah; Bryan, Amanda E B; Goldsen, Jayn

    2016-10-01

    Cognitive impairment, Alzheimer's disease, and other dementias are important health concerns for older adults. As a marginalized and growing segment of the older adult population, lesbian, gay, bisexual, and transgender (LGBT) older adults face distinct risk factors related to cognitive impairment and dementias, including social isolation, discrimination, barriers to health care access, limited availability of and support for caregivers, and higher rates of certain chronic illnesses. We examine cognitive impairment and dementias among LGBT older adults, describe their unique risk factors, and outline key competencies for health care and human service providers to ensure culturally relevant care for LGBT older adults experiencing cognitive impairment, Alzheimer's disease, or other dementias, as well as their caregivers, families, and communities. Implications include developing an awareness of the context of LGBT older adults' lives and relationships, the importance of early detection and support, and the development of policies and practices that promote community-level advocacy and education.

  14. Web-Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers: Results from a Randomized Controlled Trial in the Netherlands and the United Kingdom

    PubMed Central

    Meiland, Franka; van der Roest, Henriëtte; Kevern, Peter; Abiuso, Francesca; Bengtsson, Johan; Giuliano, Angele; Duca, Annalise; Sanders, Jennifer; Basnett, Fern; Nugent, Chris; Kingston, Paul; Dröes, Rose-Marie

    2015-01-01

    Background The doubling of the number of people with dementia in the coming decades coupled with the rapid decline in the working population in our graying society is expected to result in a large decrease in the number of professionals available to provide care to people with dementia. As a result, care will be supplied increasingly by untrained informal caregivers and volunteers. To promote effective care and avoid overburdening of untrained and trained caregivers, they must become properly skilled. To this end, the European Skills Training and Reskilling (STAR) project, which comprised experts from the domains of education, technology, and dementia care from 6 countries (the Netherlands, Sweden, Italy, Malta, Romania, and the United Kingdom), worked together to create and evaluate a multilingual e-learning tool. The STAR training portal provides dementia care training both for informal and formal caregivers. Objective The objective of the current study was to evaluate the user friendliness, usefulness, and impact of STAR with informal caregivers, volunteers, and professional caregivers. Methods For 2 to 4 months, the experimental group had access to the STAR training portal, a Web-based portal consisting of 8 modules, 2 of which had a basic level and 6 additional modules at intermediate and advanced levels. The experimental group also had access to online peer and expert communities for support and information exchange. The control group received free access to STAR after the research had ended. The STAR training portal was evaluated in a randomized controlled trial among informal caregivers and volunteers in addition to professional caregivers (N=142) in the Netherlands and the United Kingdom. Assessments were performed with self-assessed, online, standardized questionnaires at baseline and after 2 to 4 months. Primary outcome measures were user friendliness, usefulness, and impact of STAR on knowledge, attitudes, and approaches of caregivers regarding dementia

  15. Home nursing and home help for dementia patients: Predictors for utilization and expected quality from a family caregiver's point of view.

    PubMed

    Graessel, Elmar; Luttenberger, Katharina; Bleich, Stefan; Adabbo, Raffaela; Donath, Carolin

    2011-01-01

    Little is known about the factors that influence utilization of home nursing and home help or about quality expectations of family caregivers of a dementia patient. These questions are addressed in the following paper. The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in four regions of Germany. Quantitative and qualitative data from 404 family caregivers were analyzed using binary logistic regression analysis and content analysis. We found that subjective need of home nursing respectively of home help and the age of the dementia patient are significant predictors for utilization. Utilization of home nursing is also predicted by the age of the family caregiver. Punctuality of the staff is the dominant quality criterion. Hence, in order to reduce the number of those Alzheimer's disease (AD) caregivers who think they don't need home nursing or home help compared with the number who really don't need it, caregivers should be transparently informed of the relevant advantages and quality principles of using home nursing respectively home help.

  16. Differences in Rate of Cognitive Decline and Caregiver Burden between Alzheimer’s Disease and Vascular Dementia: a Retrospective Study

    PubMed Central

    Pilon, Marie-Hélène; Poulin, Stéphane; Fortin, Marie-Pierre; Houde, Michèle; Verret, Louis; Bouchard, Rémi W.; Laforce, Robert

    2016-01-01

    Few studies have explored the rate of cognitive decline and caregiver burden within the context of a specialized memory clinic. When this was done, the focus was largely on functional decline related to Alzheimer’s disease (AD). Our goal was to compare the longitudinal decline of AD patients to those with Vascular Dementia (VaD) on Mini-Mental State Examination (MMSE). We further explored the differential impact on caregiver burden. We retrospectively studied 237 charts from patients seen at our Memory Clinic between 2006 and 2012. The data was collected over 17 years. Cohorts were formed by excluding conditions other than AD and VaD, and including patients who had been assessed at least twice with the MMSE (AD: n = 83; mean age: 67.7 yo; VaD: n = 32; mean age: 73.3yo). A small group of 36 caregivers was surveyed by phone to explore caregiver burden. Results indicated that the natural history of MMSE changes in AD patients differed significantly from that of patients with VaD (F = 10.41, p<0.0014), with AD patients showing more cognitive decline over time. Sadness, stress/anxiety, fatigue, and sleep disorders were reported as the main preoccupations by caregivers and its impact was rated as ‘severe’ in 50% of cases. Altogether, this study provides further insight into the natural history of cognitive decline in AD and VaD. Future studies should explore the progression of dementing disorders in larger cohorts using prospective methodological designs. PMID:27747317

  17. Outcomes of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers: a goal-oriented approach

    PubMed Central

    Chew, Justin; Chong, Mei-Sian; Fong, Yoke-Leng; Tay, Laura

    2015-01-01

    Background Nonpharmacological interventions such as exercise and cognitive rehabilitation programs have shown promise in reducing the impact of dementia on the individual and the caregiver. In this study, we examine the effect of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers using conventional measures of cognition, behavior, quality of life (QoL), and caregiver burden together with goal attainment scaling (GAS), an individualized outcome measure. Methods Goals were set at baseline, and GAS score was calculated at the end of the program. Participants were also assessed with the Chinese Mini-Mental State Examination, functional and behavioral scales (Barthel Index), Instrumental Activities of Daily Living, Neuropsychiatric Inventory Questionnaire, QoL, and caregiver burden using EuroQol-five dimension questionnaire and Zarit Burden Interview (ZBI). Differences in median scores postintervention were obtained. Further analysis of caregiver burden was undertaken utilizing the multidimensional classification of burden on the ZBI. Results Thirty-four (61.8%) patients were assessed to have met their goals (GAS score≥50). Mean (standard deviation) GAS score was 48.6 (6.5). Cognition goals were set in only 20.6%, followed by goals to improve engagement and socialization; reduce caregiver stress; and improve physical function, behavior, and mood. Median scores in the cognitive, functional, and QoL measures did not differ significantly pre- and postintervention. The intervention had a positive impact on role strain, a unique dimension of caregiver burden. Conclusion This study provides evidence that a multimodal approach combining physical exercise and cognitive rehabilitation improves goal attainment and caregiver burden in individuals and caregivers of persons with mild dementia. PMID:26543358

  18. [Voluntary help in dementia - predictors for utilisation and expected quality from a family caregiver's point of view].

    PubMed

    Grässel, E; Luttenberger, K; Römer, H; Donath, C

    2010-09-01

    Although support services are considered cost-effective in the relief of care-giving family members of dementia patients, there has been little research to date on the predictors of use and quality expectations. These two questions are examined for the first time based on cross-sectional data of 404 care-giving family members, users and non-users of voluntary help services. Quantitative data are evaluated using binary logistical regression analysis, qualitative data using content analysis. The rating of how helpful the use of a voluntary help service is in the personal situation was found to be the only significant predictor of use. With respect to quality, it is most important that the persons giving support be punctual and well-trained. To increase the rate of use, care-giving family members must be convinced of the relevant benefits of using a voluntary help service. In addition, attention must be paid to the professional organization and training of voluntary helpers.

  19. Salience of self-identity roles in persons with dementia: differences in perceptions among elderly persons, family members and caregivers.

    PubMed

    Cohen-Mansfield, Jiska; Parpura-Gill, Aleksandra; Golander, Hava

    2006-02-01

    In this study, we explored perceptions of the salience of self-identity in persons suffering from dementia as perceived by the participants themselves, by family, and by staff caregivers. Four types of role-identity were explored: professional, family role, hobbies/leisure activities, and personal attributes. Participants were 104 persons with dementia, 48 of whom attended six adult day care centers while 56 resided in two nursing homes in the Washington, DC metropolitan area. Participants, relatives, and staff members were interviewed to obtain information about past and present self-identity roles of participants and attitudes toward these roles. Findings demonstrate that the importance of role identities decreases over time and with the progression of dementia. The family role was found to be the most important and salient role identity according to all the informant groups. The professional role was the one that showed the steepest decline in importance from past to present. Gender differences were detected for the importance of professional role identity. Participants rated their roles in the past as less important and those in the present as more important compared to family members. Family members reported greater decline in the importance of role identities for those participants with greater cognitive impairment. Participants with moderate cognitive impairment reported greater decline in the importance of role identities than did the participants with severe cognitive impairment. Understanding the past and present self-identities of persons with diminished cognitive abilities is crucial in the effort to provide individualized care and enhance participant experiences.

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

    PubMed Central

    Leung, Phuong; Whitaker, Chris; Burns, Alistair; Knapp, Martin; Leroi, Iracema; Spector, Aimee; Roberts, Steven; de Waal, Hugo; Orgeta, Vasiliki

    2017-01-01

    Background Cognitive stimulation therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (well-being) for the caregiver. Methods and findings A single-blind, pragmatic randomised controlled trial (RCT) was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants’ homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs). Participants were randomly assigned to iCST (75, 30-min sessions) or treatment as usual (TAU) control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer’s Disease Assessment Scale–cognitive [ADAS-Cog]) and self-reported QoL (Quality of Life Alzheimer’s Disease [QoL-AD]) for the person with dementia and general health status (Short Form-12 health survey [SF-12]) for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale) and health-related QoL (European Quality of Life–5 Dimensions [EQ-5D]) for the caregiver. Intention to treat (ITT) analyses were conducted. At the post-test (26 wk), there were no differences between the iCST and TAU groups

  1. Positive Aspects of Family Caregiving for Dementia: Differential Item Functioning by Race

    PubMed Central

    Dilworth-Anderson, Peggye; Huang, Jin; Gross, Alden L.; Gitlin, Laura N.

    2015-01-01

    Objectives. Due to increasing interest in the positive experiences associated with family caregiving, potential demographic group differences were examined on the Positive Aspects of Caregiving (PAC) scale at both the item and scale levels. Method. Family caregivers (N = 642) completed the PAC as part of their participation in the Resources for Enhancing Alzheimer’s Caregiver Health (REACH II) clinical trial. Multiple indicators, multiple causes models were used to examine potential differential item functioning (DIF) across demographic subgroups. Results. Overall PAC scale scores indicated that both Hispanics and African Americans experienced more PAC than Whites. Two items with statistically significant (p < .004) and practically meaningful (odds ratio > 2.0) DIF were found for African American caregivers. After controlling for the underlying unidimensional construct, African Americans reported that caregiving gave them “a more positive attitude toward life” and enabled them to “appreciate life more” than either Whites or Hispanics. No instances of meaningful DIF were found between Hispanics and Whites, women and men, or spouses and nonspouses. Discussion. PAC scores differ significantly by race. In addition, 2 items with meaningful race DIF identify content areas that are particularly relevant to the cultural experiences of African American caregivers. PMID:26033356

  2. Results and Lessons Learned from a Nurse Practitioner-Guided Dementia Care Intervention for Primary Care Patients and Their Family Caregivers

    PubMed Central

    Fortinsky, Richard H.; Delaney, Colleen; Harel, Ofer; Pasquale, Karen; Schjavland, Elena; Lynch, John; Kleppinger, Alison; Crumb, Suzanne

    2014-01-01

    Older adults with dementia care needs often visit primary care physicians (PCPs), but PCP dementia care limitations are widely documented. This study tested the value of employing a nurse practitioner (NP) with geropsychiatric expertise to augment PCP care for newly and recently diagnosed patients and family caregivers. Twenty-one dyads received the NP intervention; 10 dyads were controls. Outcomes included patient neuropsychiatric symptom and quality of life changes, and caregiver depression, burden, and self-efficacy changes. Intervention acceptability by patients, caregivers, and PCPs was determined. No outcome differences were found; however, the NP intervention was deemed highly satisfactory by all stakeholders. Patients experienced no significant cognitive decline during their 12-month study period, helping explain why outcomes did not change. Given widespread acceptability, future tests of this PCP-enhancing intervention should include patients with more progressive cognitive decline at study entry. NPs with geropsychiatric expertise are ideal interventionists for this rapidly growing target population. PMID:24444453

  3. [Blogging is an effective way to reduce a stress for caregivers who are involved in caring dementia patients at home--the result from the questionnaire survey].

    PubMed

    Hori, Miyako; Kubota, Masakazu; Kinoshita, Ayae

    2010-12-01

    We sent out questionnaires to examine how caregivers, who are involved in caring home dementia patients, effectively reduce their stresses by blogging. A total of 39 caregivers(13 males and 26 females)filled out a questionnaire(write-in free descriptive type)by E-mail. What was it that you gained from blogging to reduce a stress from the work ? The responses to that question were: (1) social support, (2) coping with stress, and (3) perception of the event. These answers appeared to be agreed with the crisis theory of Aguilera. In the situation where a lot of stresses were involved, it was clear that blogging was an effective way to reduce a stress for caregivers who were involved in caring dementia patients at home.

  4. Storytelling as a model of conversation for people with dementia and caregivers.

    PubMed

    Fels, Deborah I; Astell, Arlene J

    2011-11-01

    Storytelling is an important method of communication at all stages of life. Sharing narratives about lived events and experiences provides topics of conversation and opportunities for connecting with other people. In this article, we apply a conventional model of storytelling to the verbal reminiscences of older people with a dementia diagnosis. Their stories retain the conventional structure, suggesting that storytelling, which is an enjoyable and engaging social activity, can provide a conversation model for people with dementia.

  5. Dementia

    MedlinePlus

    ... skills) Dementia usually first appears as forgetfulness. Mild cognitive impairment (MCI) is the stage between normal forgetfulness due to aging and the development of dementia. People with MCI have mild problems ...

  6. [Small-scale, homelike care environments for people with dementia: effects on residents, family caregivers and nursing staff].

    PubMed

    Verbeek, H; Zwakhalen, S M G; van Rossum, E; Kempen, G I J M; Hamers, J P H

    2013-12-01

    Institutional dementia care is increasingly directed towards small-scale and homelike care environments, in The Netherlands as well as abroad. In these facilities, a small number of residents, usually six to eight, live together, and normal daily household activities and social participation are emphasized. In a quasi-experimental study, we studied the effects of small-scale, homelike care environments on residents (n = 259), family caregivers (n = 206) and nursing staff (n = 305). We compared two types of institutional nursing care during a 1 year period (baseline assessment and follow-up measurements at 6 and 12 months): (28) small-scale, homelike care environments and (21) psychogeriatric wards in traditional nursing homes. A matching procedure was applied to increase comparability of residents at baseline regarding functional status and cognition. This study was unable to demonstrate convincing overall effects of small-scale, homelike care facilities. On our primary outcome measures, such as quality of life and behaviour of residents and job satisfaction and motivation of nursing staff, no differences were found with traditional nursing homes. We conclude that small-scale, homelike care environments are not necessarily a better care environment than regular nursing homes and other types of living arrangements should be considered carefully. This provides opportunities for residents and their family caregivers to make a choice which care facility suits their wishes and beliefs best.

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

    PubMed Central

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

    2007-01-01

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

  8. Development and Psychometric Testing of the Caregiver Communication Competence Scale in Patients With Dementia.

    PubMed

    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.

  9. A systematic review of the psychobiological burden of informal caregiving for patients with dementia: Focus on cognitive and biological markers of chronic stress.

    PubMed

    Allen, Andrew P; Curran, Eileen A; Duggan, Áine; Cryan, John F; Chorcoráin, Aoife Ní; Dinan, Timothy G; Molloy, D William; Kearney, Patricia M; Clarke, Gerard

    2017-02-01

    As the physiological impact of chronic stress is difficult to study in humans, naturalistic stressors are invaluable sources of information in this area. This review systematically evaluates the research literature examining biomarkers of chronic stress, including neurocognition, in informal dementia caregivers. We identified 151 papers for inclusion in the final review, including papers examining differences between caregivers and controls as well as interventions aimed at counteracting the biological burden of chronic caregiving stress. Results indicate that cortisol was increased in caregivers in a majority of studies examining this biomarker. There was mixed evidence for differences in epinephrine, norepinephrine and other cardiovascular markers. There was a high level of heterogeneity in immune system measures. Caregivers performed more poorly on attention and executive functioning tests. There was mixed evidence for memory performance. Interventions to reduce stress improved cognition but had mixed effects on cortisol. Risk of bias was generally low to moderate. Given the rising need for family caregivers worldwide, the implications of these findings can no longer be neglected.

  10. Dementia

    MedlinePlus

    ... aging. Many different diseases can cause dementia, including Alzheimer's disease and stroke. Drugs are available to treat some ... they may improve symptoms or slow down the disease. NIH: National Institute of Neurological Disorders and Stroke

  11. Wives, Husbands, and Daughters Caring for Institutionalized and Noninstitutionalized Dementia Patients: Toward a Model of Caregiver Burden.

    ERIC Educational Resources Information Center

    Harper, Sarah; Lund, Dale A.

    1990-01-01

    Surveyed 409 caregivers. Found primary correlates of caregiver burden related to levels and types of impairment in patient functioning, caregiver life satisfaction, social support. Each category of caregiver circumstances had unique set of correlates with total amount of variance explained in burden ranging from 25 percent (husbands living with…

  12. The Cost-Effectiveness of Two Forms of Case Management Compared to a Control Group for Persons with Dementia and Their Informal Caregivers from a Societal Perspective

    PubMed Central

    Eekhout, Iris; Joling, Karlijn J.; van Mierlo, Lisa D.; Meiland, Franka J. M.; van Hout, Hein P. J.; de Rooij, Sophia E.

    2016-01-01

    Objectives The objective of this article was to compare the costs and cost-effectiveness of the two most prominent types of case management in the Netherlands (intensive case management and linkage models) against no access to case management (control group) for people with already diagnosed dementia and their informal caregivers. Methods The economic evaluation was conducted from a societal perspective embedded within a two year prospective, observational, controlled, cohort study with 521 informal caregivers and community-dwelling persons with dementia. Case management provided within one care organization (intensive case management model, ICMM), case management where care was provided by different care organizations within one region (Linkage model, LM), and a group with no access to case management (control) were compared. The economic evaluation related incremental costs to incremental effects regarding neuropsychiatric symptoms (NPI), psychological health of the informal caregiver (GHQ-12), and quality adjusted life years (QALY) of the person with dementia and informal caregiver. Results Inverse-propensity-score-weighted models showed no significant differences in clinical or total cost outcomes between the three groups. Informal care costs were significantly lower in the ICMM group compared to both other groups. Day center costs were significantly lower in the ICMM group compared to the control group. For all outcomes, the probability that the ICMM was cost-effective in comparison with LM and the control group was larger than 0.97 at a threshold ratio of 0 €/incremental unit of effect. Conclusion This study provides preliminary evidence that the ICMM is cost-effective compared to the control group and the LM. However, the findings should be interpreted with caution since this study was not a randomized controlled trial. PMID:27655234

  13. Dementia

    MedlinePlus

    ... him or her.What should I do if hallucinations are a problem?If hallucinations are not making your loved one scared or ... to confront people who have dementia about their hallucinations. Arguing may just upset your loved one. However, ...

  14. Predictors of perceived benefits and drawbacks of using paid service among daughter and daughter-in-law caregivers of people with dementia.

    PubMed

    Moon, Heehyul

    2016-01-01

    This study examines the types of benefits and drawbacks of a sample of daughter and daughter-in-law caregivers (CG) of people with dementia and explores the predictors associated with the identified benefits and drawbacks. The current study used a secondary analysis of a purposive sample of 102 daughters or daughters-in-law living in Northeast Ohio who were required to be using at least 8 hours of paid services per week to help in caring for their care recipient (CR) with Alzheimer's disease or other memory problems. Logistic regression was used. All respondents answered that there were benefits of having the paid help, but 51% of them reported drawbacks as well. The analyses revealed that predictors of each identified benefit and drawback were different. Information about benefits and drawbacks of paid help is useful for service providers to design better services for CGs of people with dementia.

  15. ‘A respite thing’: A qualitative study of a creative arts leisure programme for family caregivers of people with dementia

    PubMed Central

    Pienaar, Lorinda

    2015-01-01

    This study explored the meanings of participating in a 5-week creative arts leisure programme designed for family caregivers of people with dementia, using interpretative phenomenological analysis. Eight carers attended and four who met the eligibility criteria agreed to be interviewed. Participants experienced the arts group as providing a sense of freedom and respite, strengthening identity through promoting achievement, offering social support through a collective focus on art- and craft-making and increasing resilience for coping with caring. Some found the 5-week programme too short. Benefits were linked to the security of knowing that loved ones with dementia were close by, being well cared for. Further research is needed into the long-term benefits of creative arts groups for promoting carer well-being. PMID:28070356

  16. Association of early-onset dementia with activities of daily living (ADL) in middle-aged adults with intellectual disabilities: the caregiver's perspective.

    PubMed

    Lin, Lan-Ping; Hsu, Shang-Wei; Hsia, Yi-Chen; Wu, Chia-Ling; Chu, Cordia; Lin, Jin-Ding

    2014-03-01

    Few studies have investigated in detail which factors influence activities of daily living (ADL) in adults with intellectual disabilities (ID) comorbid with/without dementia conditions. The objective of the present study was to describe the relation between early onset dementia conditions and progressive loss of ADL capabilities and to examine the influence of dementia conditions and other possible factors toward ADL scores in adults with ID. This study was part of the "Healthy Aging Initiatives for Persons with an Intellectual Disability in Taiwan: A Social Ecological Approach" project. We analyzed data from 459 adults aged 45 years or older with an ID regarding their early onset symptoms of dementia and their ADL profile based on the perspective of the primary caregivers. Results show that a significant negative correlation was found between dementia score and ADL score in a Pearson's correlation test (r=-0.28, p<0.001). The multiple linear regression model reported that factors of male gender (β=4.187, p<0.05), marital status (β=4.79, p<0.05), education level (primary: β=5.544, p<0.05; junior high or more: β=8.147, p<0.01), Down's syndrome (β=-9.290, p<0.05), severe or profound disability level (β=-6.725, p<0.05; β=-15.773, p<0.001), comorbid condition (β=-4.853, p<0.05) and dementia conditions (β=-9.245, p<0.001) were variables that were able to significantly predict the ADL score (R(2)=0.241) after controlling for age. Disability level and comorbidity can explain 10% of the ADL score variation, whereas dementia conditions can only explain 3% of the ADL score variation in the study. The present study highlights that future studies should scrutinize in detail the reasons for the low explanatory power of dementia for ADL, particularly in examining the appropriateness of the measurement scales for dementia and ADL in aging adults with ID.

  17. Identifying at-risk dementia caregivers following institutionalization: the nursing home admission-burden and nursing home admission-depression prognostic tools.

    PubMed

    Gaugler, Joseph E; Mittelman, Mary S; Hepburn, Kenneth; Newcomer, Robert

    2014-08-01

    The current study developed prognostic tools to identify dementia caregivers at-risk for clinically relevant burden or depressive symptoms following nursing home admission (NHA) of their family members. A retrospective, longitudinal design was used that included 1,610 dementia caregivers who provided data prior to and up to 6 months following nursing home admission. Response operant characteristic (ROC) curves were constructed to test and validate two prognostic tools: the NHA-Burden and NHA-Depression tools. An ROC curve yielded a sensitivity of 77% and a specificity of 62.5% at a cutoff score of 5.41 for the NHA-Burden Prognostic tool. A second ROC curve indicated a sensitivity of 75.4% and a specificity of 62.5% at a cutoff score of 7.45 for the NHA-Depression tool. Clinicians may wish to utilize cutpoints on the NHA-Burden and NHA-Depression tools to ensure that more persons who are at-risk for clinically significant burden or depression during NHA are identified.

  18. The Process of Change in Complicated Grief Group Therapy for Bereaved Dementia Caregivers: an Evaluation Using the Meaning of Loss Codebook.

    PubMed

    Supiano, Katherine P; Haynes, Lara Burns; Pond, Vicki

    2017-01-04

    Caring for a person with dementia is challenging and has adverse health and mental health effects that, for 9-25% of caregivers persist into bereavement in the form of complicated grief (CG). For those bereaved dementia caregivers unable to satisfactorily process grief, specialized Complicated Grief Group Therapy (CGGT) can restore a healthy grief process. We investigated the progression of therapeutic change in CGGT participants (N = 16 in three treatment groups), using an adapted version of Meaning of Loss Codebook (MLC; Gillies et al., 2014, 2015) that captured both negatively and positively valenced meaning of death themes in CGGT participants. We evaluated MLC coded video segments of group therapy sessions focusing on inflection points in grief transitions including retelling of the death story, voiced interpretation of imaginal conversations with the deceased care recipient and self-statements of change. Participants demonstrated positive gains in 16 thematic areas, most notably in moving on with life, in summoning pleasant memories, and in ascribing bad memories to disease rather than the decedent. Our hypothesis that meaning of loss themes would transition from negatively to positively valenced interpretations of the death over the course of treatment was supported, and will contribute to refinement of CGGT treatment.

  19. Caregivers' Reactions to the Physical Appearance of a Person in the Final Stage of Dementia as Measured by Semantic Differentials.

    ERIC Educational Resources Information Center

    Asplund, Kenneth; Norberg, Astrid

    1993-01-01

    Caregivers (n=158) from Swedish nursing home rated severely demented person as painful, apathetic, suffering, weak, afraid, sad, cold, dark, rough, and ugly. Four years later, comparable group of 93 caregivers answered revised questionnaire. Results were nearly identical to first administration. (Author/NB)

  20. Health-related quality-of-life of care-givers as a predictor of nursing-home placement of patients with dementia.

    PubMed

    Argimon, Josep M; Limon, Esther; Vila, Joan; Cabezas, Carmen

    2005-01-01

    Care-giver health-related quality-of-life (QoL) as a predictor of nursing-home placement of family-member patients with dementia was evaluated (using the SF-36 questionnaire) in 181 care providers (78% females; mean age 63 years) at the start and at the end of 12 months of follow-up. The patients and their carers were evaluated at home or at the local Primary Health-care Centers (n = 37) in the area of Barcelona (Catalunya, Spain). Data were evaluated using logistic regression analysis with nursing-home placement of patients as the main outcome measure, and the care-givers' QoL, demographic, medical, social and cognitive variables as covariates. The incidence rate of nursing-home placement was 10.5% (95%CI: 6.4-15.9). Carers of patients who had not been placed in a nursing home had better QoL scores, even after controlling for potential confounding factors. The adjusted odds ratio of being admitted to a nursing home was 6.4 (95%CI: 2.1-19.0) for patients cared-for by relatives who rated their health as being much worse compared with the previous year. The care-giver's poor health-related QoL significantly influenced rates of nursing-home admission of patients in their care.

  1. Spousal Caregiver Narratives and Credible Authority: Uncertainty in Illness of Spousal Caregivers

    ERIC Educational Resources Information Center

    Sodowsky, Karen

    2012-01-01

    This article is taken from a larger longitudinal study that used caregiver interviews, caregiver surveys, and caregiver statistical information of one community. The interviews were conducted with six spousal caregivers to examine the narratives produced by spouses actively caring for their partners with dementia. The spousal caregivers were…

  2. Confirmatory Factor Analysis of a Brief Version of the Zarit Burden Interview in Black and White Dementia Caregivers

    ERIC Educational Resources Information Center

    Flynn Longmire, Crystal V.; Knight, Bob G.

    2011-01-01

    Purpose of the study: Although the Zarit Burden Interview (ZBI) is one of the most extensively used measures in research for caregiver burden, few researchers have examined its factor structure. Furthermore, though the ZBI has also been used in cross-group comparisons of burden, there have not been studies of whether or not it measures burden…

  3. Social Network Data Validity: The Example of the Social Network of Caregivers of Older Persons with Alzheimer-Type Dementia

    ERIC Educational Resources Information Center

    Carpentier, Normand

    2007-01-01

    This article offers reflection on the validity of relational data such as used in social network analysis. Ongoing research on the transformation of the support network of caregivers of persons with an Alzheimer-type disease provides the data to fuel the debate on the validity of participant report. More specifically, we sought to understand the…

  4. Impact of TimeSlips, a Creative Expression Intervention Program, on Nursing Home Residents with Dementia and their Caregivers

    ERIC Educational Resources Information Center

    Fritsch, Thomas; Kwak, Jung; Grant, Stacey; Lang, Josh; Montgomery, Rhonda R.; Basting, Anne D.

    2009-01-01

    Purpose: Creative expression (CE) programs are emerging interventions to improve the quality of care and life of persons with dementia (PWDs) in long-term care settings. However, limited empirical evidence exists to support the effectiveness of these programs. Here, we report the findings from an assessment of the impact of TimeSlips (TS), a group…

  5. Health care triads and dementia care: integrative framework and future directions.

    PubMed

    Fortinsky, R H

    2001-05-01

    Physicians are usually the first contact in the health care system for persons with dementia and their family caregivers. This paper provides a synopsis of research findings and knowledge gaps regarding interactions among these participants in the health care triad--primary care physicians, family caregivers, and persons with dementia. Research traditions that inform knowledge about health care triads and dementia care include: older patient-physician relationships; the stress-coping social-support health model that dominates family caregiver research; the social learning-self-efficacy model; and literature on the quality of medical care. An integrative framework is presented to illustrate how the quality of interaction in dementia care encounters may be influenced by specific characteristics of members of the health care triad. Domains of dementia care interaction include symptom diagnosis, symptom management, medication management, support service linkage, and emotional support. The integrative framework also links the quality of interaction in these domains with health-related outcomes relevant to each of the health care triad members. Most empirical research in this area has found that family caregivers are dissatisfied with many aspects of physicians' dementia care, but measurement techniques vary widely and little is known about how the quality of physician care is associated with health-related outcomes. Physician surveys have shown that they are least certain about the quality of support service linkage advice they provide. Virtually no research has examined how the person with dementia experiences medical care encounters with physicians and their family members. Much remains to be learned about the longitudinal experience of each member of the health care triad, and how the quality of dementia care encounters changes over the course of the disease process. In this era of rapidly expanding educational and support service interventions for persons with

  6. Social Network Data Validity: The Example of the Social Network of Caregivers of Older Persons with Alzheimer-Type Dementia*

    PubMed Central

    Carpentier, Normand; Ducharme, Francine

    2010-01-01

    This article offers reflection on the validity of relational data such as used in social network analysis. Ongoing research on the transformation of the support network of caregivers of persons with an Alzheimer-type disease provides the data to fuel the debate on the validity of participant report. More specifically, we sought to understand the factors that might influence the description of the support network by persons involved in caregiving. The issue warrants special attention, given that social relations – in their form and their content – constitute the raw material of network analysis. We propose that how persons describe their social network corresponds to a subjective process that rests, in part, on their representation of their cultural and social universe. PMID:20737030

  7. Yogic meditation reverses NF-κB and IRF-related transcriptome dynamics in leukocytes of family dementia caregivers in a randomized controlled trial

    PubMed Central

    Black, David S.; Cole, Steve; Irwin, Michael R.; Breen, Elizabeth; St Cyr, Natalie M.; Nazarian, Nora; Khalsa, Dharma S.; Lavretsky, Helen

    2012-01-01

    Background Although yoga and meditation have been used for stress reduction with reported improvement in inflammation, little is known about the biological mechanisms mediating such effects. The present study examined if a yogic meditation might alter the activity of inflammatory and antiviral transcription control pathways that shape immune cell gene expression. Methods Forty-five family dementia caregivers were randomized to either Kirtan Kriya Meditation (KKM) or Relaxing Music (RM) listening for 12 minutes daily for 8 weeks and 39 caregivers completed the study. Genome-wide transcriptional profiles were collected from peripheral blood leukocytes sampled at baseline and 8-week follow-up. Promoter-based bioinformatics analyses tested the hypothesis that observed transcriptional alterations were structured by reduced activity of the pro-inflammatory nuclear factor (NF)-κB family of transcription factors and increased activity of Interferon Response Factors (IRF; i.e., reversal of patterns previously linked to stress). Results In response to KKM treatment, 68 genes were found to be differentially expressed (19 up-regulated, 49 down-regulated) after adjusting for potentially confounded differences in sex, illness burden, and BMI. Up-regulated genes included immunoglobulin-related transcripts. Down-regulated transcripts included pro-inflammatory cytokines and activation-related immediate-early genes. Transcript origin analyses identified plasmacytoid dendritic cells and B lymphocytes as the primary cellular context of these transcriptional alterations (both p < .001). Promoter-based bioinformatic analysis implicated reduced NF-κB signaling and increased activity of IRF1 in structuring those effects (both p < .05). Conclusion A brief daily yogic meditation intervention may reverse the pattern of increased NF-κB-related transcription of pro-inflammatory cytokines and decreased IRF1-related transcription of innate antiviral response genes previously observed in

  8. Lewy Body Dementia Research

    MedlinePlus

    ... According to a new RAND Corporation study, the monetary cost of dementia in the United States ranges ... Caregivers Professionals Volunteer Shop Search Sitemap Terms and Policies Disclaimer Careers State Fundraising Notices latest tweets Tweets ...

  9. Latino/Hispanic Alzheimer’s caregivers experiencing dementia-related dressing issues: corroboration of the Preservation of Self model and reactions to a “smart dresser” computer-based dressing aid

    PubMed Central

    Mahoney, Diane Feeney; Coon, David W; Lozano, Cecil

    2016-01-01

    Objective To gain an understanding of Latino/Hispanic caregivers’ dementia-related dressing issues, their impressions of using a “smart” context-aware dresser to coach dressing, and recommendations to improve its acceptability. Method The same Latina moderator conducted all the caregiver focus groups. She followed a semi-structured interview guide that was previously used with White and African American family caregivers who experienced Alzheimer’s disease related dressing challenges. From that study, the Preservation of Self model emerged. Using a deductive qualitative analytic approach, we applied the thematic domains from the Preservation of Self model to ascertain relevance to Latino/Hispanic caregivers. Results Twenty Latino/Hispanic experienced caregivers were recruited, enrolled, and participated in one of three focus groups. The majority were female (75%) and either the spouse (25%) or adult child (35%). Striking similarities occurred with the dressing challenges and alignment with the Preservation of Self model. Ethnic differences arose in concerns over assimilation weakening the Latino culture of family caregiving. Regional clothing preferences were noted. Technology improvement recommendations for our system, called DRESS, included developing bilingual prompting dialogs and video modules using the local vernacular to improve cultural sensitivity. Caregivers identified the potential for the technology to enable user privacy, empowerment, and exercise as well as offering respite time for themselves. Conclusion Findings suggest dementia-related dressing issues were shared in common by different racial/ethnic groups but the response to them was influenced by cultural dynamics. For the first time Latino/Hispanic voices are heard to reflect their positive technology impressions, concerns, and recommendations in order to begin to address the cultural digital disparities divide. PMID:27928511

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

    PubMed Central

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

    2014-01-01

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

  11. The role of occupational therapy in dementia-C.O.P.E. (Caregiver options for practical experiences).

    PubMed

    Miller, P A; Butin, D

    2000-01-01

    Occupational therapy is a profession that enables individuals to regain, maintain or promote function after an illness, injury or disability occurs. The basis of the profession's philosophy derives from a recognition of the importance of meaningful activity (occupation) in people's lives to support function, quality of life and the debilitating effects of inactivity. Occupational therapy enhances the abilities of individuals to engage in the following performance areas: (1) activities of daily living (eg eating, bathing, toileting, functional mobility) and instrumental activities of daily living (eg meal preparation, shopping, managing one's finances); (2) work and productive activities (eg care of others, educational and vocational activities); and (3) leisure to meet a variety of needs that are culturally meaningful to individuals and their significant others. In order to determine the etiologies of dysfunction in one or more performance areas, occupational therapists assess the following components of performance: sensorimotor, neuromusculoskeletal, motor, cognitive, and psychosocial. This assessment becomes the basis for tailoring treatment to individuals' needs and interests. When deficits and strengths in performance components and performance areas have been identified, occupational therapists work with clients/patients and their caregivers to reduce the barriers in daily functioning and facilitate maximum engagement in their environments, the human and physical context for daily living.

  12. Caregiver distress in parkinsonism.

    PubMed

    Cifu, David X; Carne, William; Brown, Rashelle; Pegg, Phillip; Ong, Jason; Qutubuddin, Abu; Baron, Mark S

    2006-01-01

    This study examined the frequency and degree of caregiver burden in persons with parkinsonism, a group of disorders with four primary symptoms that include tremor, rigidity, postural instability, and bradykinesia. We assessed associations between perceived caregiver burden and physical, cognitive, and functional impairments using well-established tools for persons with parkinsonism. The 49 individuals with parkinsonism ranged in age from 61 to 87 (mean = 75), while their caregivers (N = 49) ranged in age from 48 to 83 (mean = 70). The caregivers were predominantly either wives (82%) or daughters (6%), with other family members, friends, and/or neighbors (12%) making up the rest. The caregivers reported a relatively high ability for coping (mean scores = 4.6/6). Caregiver burden was significantly negatively associated with activities of daily living and motoric difficulties as measured on the Unified Parkinson's Disease Rating Scale (UPDRS). Likewise, caregiver burden was negatively associated with caregiver self-reported sleep and coping ability. Results did not demonstrate an association on the UPDRS among mentation, behavior, and mood. We found a significant negative correlation for mentation between the Folstein Mini-Mental Status Examination and caregiver burden measures; however, we did not find this association with the Dementia Rating Scale-2. Patient's self-reported pain and caregiver burden were not associated.

  13. Concordance of Race or Ethnicity of Interventionists and Caregivers of Dementia Patients: Relationship to Attrition and Treatment Outcomes in the REACH Study

    ERIC Educational Resources Information Center

    McGinnis, Kathleen A.; Schulz, Richard; Stone, Roslyn A.; Klinger, Julie; Mercurio, Rocco

    2006-01-01

    Purpose: We assess the effects of racial or ethnic concordance between caregivers and interventionists on caregiver attrition, change in depression, and change in burden in a multisite randomized clinical trial. Design and Methods: Family caregivers of patients with Alzheimer's disease were randomized to intervention or control groups at six sites…

  14. Information Needs of Family Caregivers of Persons with Cognitive versus Physical Deficits

    ERIC Educational Resources Information Center

    Koenig, Kelly N.; Steiner, Victoria; Pierce, Linda L.

    2011-01-01

    This study compared information needs of caregivers of persons with dementia with caregivers of those who received rehabilitation treatment. Caregivers were provided a 48-item survey and asked to choose their top ten information needs. Dementia caregivers' (n = 33) top needs were dealing with forgetfulness/confusion (91%) and repeating…

  15. Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study

    PubMed Central

    de Vugt, Marjolein E; Withagen, Hanneke EJ; Kempen, Gertrudis IJM; Verhey, Frans RJ

    2016-01-01

    Background 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. Objective 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. Methods 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. Results 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. Conclusions 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

  16. Change in Indices of Distress among Latino and Anglo Female Caregivers of Elderly Relatives with Dementia: Site-Specific Results from the REACH National Collaborative Study

    ERIC Educational Resources Information Center

    Gallagher-Thompson, Dolores; Coon, David W.; Solano, Nancy; Ambler, Christian; Rabinowitz, Yaron; Thompson, Larry W.

    2003-01-01

    Purpose: Few empirical studies have compared the efficacy between psychoeducational (skill-building) approaches for reducing caregivers' psychological distress and interventions modeled after typical community-based support groups. We compare the impact of two distinct interventions on Anglo and Latino caregivers of elderly relatives with…

  17. Family caregivers’ role implementation at different stages of dementia

    PubMed Central

    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

  18. Informal caregivers' hopes and expectations of a referral to a memory clinic.

    PubMed

    Morgan, Debra G; Walls-Ingram, Sheena; Cammer, Allison; O'Connell, Megan E; Crossley, Margaret; Dal Bello-Haas, Vanina; Forbes, Dorothy; Innes, Anthea; Kirk, Andrew; Stewart, Norma

    2014-02-01

    Although only 20-50% of individuals with dementia are diagnosed, early diagnosis enables patients and families to access interventions and services, and plan for the future. The current study explored the experiences of rural family caregivers in the period leading up to a diagnostic assessment at a Canadian memory clinic, their hopes and expectations of the assessment, and their experiences in the six months following diagnosis. Using a longitudinal, retrospective and prospective qualitative research design, caregivers of 30 patients referred to the clinic were interviewed during the diagnostic assessment process and again six months after the diagnosis. Most caregivers reported first noticing symptoms two years prior to diagnosis. The pre-diagnostic interviews revealed a prevalent 'need to know' among caregivers that drove the help-seeking process. Caregivers hoped that the diagnosis would have the benefits of 'naming it,' 'accessing treatment,' 'knowing what to expect,' and 'receiving guidance.' When asked six months later about the impact of the diagnosis, the main theme was 'acceptance and moving forward.' Caregivers reported that the diagnosis provided 'relief,' 'validation,' and 'improved access to services.' These findings can inform care practices of primary health care providers who represent the first point of contact regarding expectations and experiences of dementia-related diagnoses.

  19. Dog-assisted therapy for older people with dementia: a review.

    PubMed

    Perkins, Jacqueline; Bartlett, Helen; Travers, Catherine; Rand, Jacquie

    2008-12-01

    This review summarises and critiques the published literature regarding dog therapy for older people with dementia living in residential aged care facilities. Nine studies were identified for inclusion and although the methodological variability of studies makes it difficult to draw firm conclusions, research suggests that dog therapy is beneficial for people with dementia. The most frequently reported findings were an increase in social behaviour and a decrease in agitated behaviour during dog contact. Improvement in social behaviour was found to be unrelated to the severity of dementia. Various improvements on measures of global function were also reported. No study adopted a randomised controlled trial design and a number of potentially important factors were not controlled for, including halo effects of animals on caregivers that may bias caregivers' responses when acting as proxies for their relatives or residents. The premorbid relationship with dogs may be an important variable influencing outcomes.

  20. Effectiveness of Cognitive/Behavioral Small Group Intervention for Reduction of Depression and Stress in Non-Hispanic White and Hispanic/Latino Women Dementia Family Caregivers: Outcomes and Mediators of Change

    PubMed Central

    Gray, Heather L.; Dupart, Tamarra; Jimenez, Daniel; Thompson, Larry W.

    2014-01-01

    This study enrolled 184 middle-aged and older women (95 Non-Hispanic White and 89 Hispanic/Latino) who provided in-home hands-on care to an elderly relative with Alzheimer's disease or another form of dementia. Within ethnic group they were randomly assigned to either a CBT-based small group intervention program called “Coping with Caregiving” (CWC) that taught a variety of cognitive and behavioral skills to reduce stress and depression, or to a minimal telephone based control condition (TSC). Intervention lasted about 4 months; one post-treatment assessment was completed 6 months after baseline by interviewers blind to the intervention condition. Interviews and interventions were conducted in English or Spanish by trained staff. Results indicated that those in the CWC (regardless of ethnicity) showed greater improvement from pre to post intervention than those in the TSC on measures of depressive symptoms, overall life stress, and caregiving-specific stress. In order to investigate if these changes may have been related to one proposed mechanism of change in CBT (skill utilization), a new measure was constructed. Change in frequency of use and perceived helpfulness of adaptive coping skills were assessed in all caregivers. Results indicated that caregivers in CWC reported greater frequency of use, and greater perceived helpfulness, of these skills at post intervention compared to caregivers in the TSC. Improvement measured by dependent measures was correlated with an increase in these indices for those in the CWC. Tests for mediation suggest that effective skill utilization may mediate the effect of treatment on outcome. Implications of these findings are discussed and recommendations provided for future research. PMID:25067886

  1. Caregiver Well-Being

    PubMed Central

    Dujela, Carren; Smith, André

    2015-01-01

    We know much about caregiving women compared with caregiving men and caregiving spouses compared with caregiving adult children. We know less about the intersections of relationship and gender. This article explores this intersection through the well-being (burden and self-esteem) of caregivers to family members with dementia. Throughout British Columbia, Canada, 873 caregivers were interviewed in person for on average, over 1½ hours. The results reveal that daughters experience the highest burden but also the highest self-esteem, suggesting the role is less salient for their self-identities. Wives emerge as the most vulnerable of the four groups when both burden and self-esteem are considered. The data confirm the usefulness of the intersectionality framework for understanding co-occupancy of more than one status and indicate that positive cognitive well-being and negative affective well-being can be differentially related. Multivariate analyses confirm the importance of caregiver, not patient, characteristics for burden and self-esteem. PMID:25651586

  2. Caregiving Statistics

    MedlinePlus

    ... Costs; National Alliance for Caregiving and MetLife Mature Market Institute. February 2010 40% to 70% of family ... Costs; National Alliance for Caregiving and MetLife Mature Market Institute. February 2010 73% of family caregivers who ...

  3. Caregiver Depression

    MedlinePlus

    ... will not sell or share your name. Caregiver Depression Tweet Bookmark this page | Email | Print Many caregivers ... depression See your doctor Treatment Coping Symptoms of depression Caregiving is hard — and can lead to feelings ...

  4. The Effects of Duration of Caregiving on Institutionalization

    ERIC Educational Resources Information Center

    Gaugler, Joseph E.; Kane, Robert L.; Kane, Rosalie A.; Clay, Ted; Newcomer, Robert C.

    2005-01-01

    Purpose: Our objective in this analysis was to determine how the duration of caregiving interacts with key care demands (i.e., severity of problem behaviors) to influence the institutionalization of individuals suffering from dementia. Methods: We utilized multiregional data from 4,761 caregivers of individuals with dementia over a 3-year period.…

  5. [Dementia: management and prevention].

    PubMed

    Daher, Oscar; Nguyen, Sylvain; Smith, Cindi; Büla, Christophe; Démonet, Jean-François

    2016-04-20

    Dementia represents a great challenge for health care providers. Detection of cognitive impairment is critical for early diagnosis of dementia. Early diagnosis allows to initiate individualized management that focuses on maintaining patient's autonomy and supporting their caregivers. Proposed multimodal interventions include physical activity, cognitive training, mediterranean diet, and management of cardiovascular risk factors. Before the initiation of pro-cognitive therapy, medication review is essential to evaluate current treament and determine specific therapeutic objectives, based on patient's overall health and preferences. Overall risk reduction for dementia revolves around similar measures that target physical activity, cognition, diet and management of cardiovascular risk factors.

  6. How do people with dementia utilise primary care physicians and specialists within dementia networks? Results of the Dementia Networks in Germany (DemNet-D) study.

    PubMed

    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.

  7. Caregiver Stigma and Burden in Memory Disorders: An Evaluation of the Effects of Caregiver Type and Gender

    PubMed Central

    Kahn, Phoebe V.; Wishart, Heather A.; Randolph, Jennifer S.; Santulli, Robert B.

    2016-01-01

    Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-two caregivers were given the Zarit Burden Inventory Short Form (ZBI) and the Caregiver Section of the Family Stigma in Alzheimer's Disease Scale (FS-ADS-C). Scores on the FS-ADS-C and ZBI were positively correlated (rs = .51, p < .001). Female caregivers reported experiencing more stigma on the FS-ADS-C (t(80) = −4.37, p < .001) and more burden on the ZBI (t(80) = −2.68, p = .009) compared to male caregivers, and adult child caregivers reported experiencing more stigma on the FS-ADS-C (t(30.8) = −2.22, p = .034) and more burden on the ZBI (t(80) = −2.65, p = .010) than spousal caregivers. These results reinforce the importance of support for caregivers, particularly adult child and female caregivers who may experience higher levels of stigma and burden. PMID:26941795

  8. Caregiver Assessment

    ERIC Educational Resources Information Center

    Feinberg, Lynn

    2008-01-01

    Assessment is a critical step in determining appropriate support services. This article discusses "caregiver assessment," a systematic process of gathering information to describe a caregiving situation. Caregiver assessment identifies the particular problems, needs, resources, and strengths of the family caregiver and approaches issues from the…

  9. Awareness of Deficit in Alzheimer's Disease: Relation to Caregiver Burden.

    ERIC Educational Resources Information Center

    Seltzer, Benjamin; And Others

    1997-01-01

    Analyzes caregiver burden in relation to Alzheimer patients' awareness of their own deficits. Results suggest that caregiver burden was associated with impaired patient awareness of memory deficit independent of disease stage and dementia severity, suggesting that impaired awareness may be an important mediator of caregiver burden. (RJM)

  10. Impact of home care management on the involvement of informal caregivers by formal caregivers.

    PubMed

    van Wieringen, Marieke; Broese van Groenou, Marjolein I; Groenewegen, Peter

    2015-01-01

    This study explores the link between management characteristics of home care agencies and the involvement of informal caregivers in caregiving. Based on a study of policy documents of two agencies and semi-structured interviews with five team managers and 31 formal caregivers, we conclude that, although the importance of involving informal caregivers is emphasized in official documentation, actual contact with informal caregivers is often lacking. Comparison of the work processes of the two agencies shows that contact with informal caregivers and their potential involvement are enhanced by smaller teams, less task division, and clarity about the responsibilities of formal caregivers.

  11. Evaluating abuse in the patient with dementia.

    PubMed

    Tronetti, Pamela

    2014-11-01

    For patients with dementia, abuse ranges from subtle scams to outright physical violence. As dementia progresses, abuse escalates. The stages of dementia--mild cognitive impairment, mild dementia, moderate dementia, and severe dementia--lend themselves to varied presentations of abuse. Knowing which types of abuse are more prominent at each stage aids the clinician in anticipating risk of abuse and patient and caregiver needs. Interviewing the victim is crucial in uncovering, documenting, and intervening in an abuse situation. A clinician who is skilled in drawing out the facts while remaining supportive of the patient is key in ending the victimization.

  12. [Taking care of the caregiver: evaluation of the degree of satisfaction, stress levels and expectations of caregivers of patients attending an ambulatory unit for Alzheimer disease evaluation].

    PubMed

    Marabotto, Marco; Raspo, Silvio; Gerardo, Bruno; Cena, Paola; Bonetto, Martina; Cappa, Giorgetta

    2011-04-01

    According to literature, challenges associated with caregiving of demented should be taken into great consideration. The aim of the present study was to evaluate the knowledge about dementia and health services dedicated to demented care among the caregivers of the patients attending our Dementia Ambulatory, caregivers' level of autonomy in taking care of the demented patients, their levels of stress and the degree of their satisfaction as the services provided by our Dementia Ambulatory. Our data show how a memory clinic needs to take care of both patients and their caregivers, with particular stress on caregiver specific education and well-being.

  13. Emotional function in dementia patients.

    PubMed

    Fujii, Masahiko; Butler, James P; Sasaki, Hidetada

    2014-09-01

    Behavioural and psychological symptoms of dementia, which can be considered as hyperreactivity of the emotional functioning of dementia, can be alleviated or aggravated by the behavioural and psychological symptoms of the caregiver. Comfortable stimulations of emotional function through sensory stimulations are effective methods for alleviating behavioural and psychological symptoms of dementia. Although cognitive function deteriorates with age, emotional function is often retained even in advanced years. Thus, it is recommended that care in patients with dementia be focused mainly on the stimulation of emotional function (e.g. sympathy and empathy, which are human traits), rather than relying solely on the stimulation of cognitive function.

  14. Challenges in Efficacy Research: The Case of Feeding Alternatives in Patients with Dementia

    PubMed Central

    ZAPKA, Jane; AMELLA, Elaine J.; MAGWOOD, Gayenell S.; MADISETTI, Mohan; GARROW, Donald A.; ASELAGE, Melissa B.

    2014-01-01

    Aims To explore factors at the family caregiver and nursing home administrative levels that may affect participation in a clinical trial to determine the efficacy of hand feeding versus percutaneous gastrostomy tube feeding in persons with late-stage dementia. Background Decision-making regarding use of tube feeding vs. hand feeding for persons with late-stage dementia is fraught with practical, emotional and ethical issuesand is not informed by high levels of evidence. Design Qualitative case study. Methods Transcripts of focus groups with family caregivers were reviewed for themes guided by behavioral theory. Analyses of notes from contacts with nursing home administrators and staff were reviewed for themes guided by an organizational readiness model. Data were collected between the years 2009–2012. Results Factors related to caregiver willingness to participate included understanding of the prognosis of dementia, perceptions of feeding needs and clarity about research protocols. Nursing home willingness to participate was influenced by corporate approval, concerns about legal and regulatory issues and prior relationships with investigators. Conclusion Participation in rigorous trials requires lengthy navigation of complex corporate requirements and training competent study staff. Objective deliberation by caregivers will depend on appropriate recruitment timing, design of recruitment materials and understanding of study requirements. The clinical standards and policy environment and the secular trends therein have relevance to the responses of people at all levels. PMID:24612316

  15. Factors Related to Establishing a Comfort Care Goal in Nursing Home Patients with Dementia: A Cohort Study among Family and Professional Caregivers

    PubMed Central

    van Soest-Poortvliet, Mirjam C.; de Vet, Henrica C.W.; Hertogh, Cees M.P.M.; Onwuteaka-Philipsen, Bregje D.; Deliens, Luc H.J.

    2014-01-01

    Abstract Background: Many people with dementia die in long-term care settings. These patients may benefit from a palliative care goal, focused on comfort. Admission may be a good time to revisit or develop care plans. Objective: To describe care goals in nursing home patients with dementia and factors associated with establishing a comfort care goal. Design: We used generalized estimating equation regression analyses for baseline analyses and multinomial logistic regression analyses for longitudinal analyses. Setting: Prospective data collection in 28 Dutch facilities, mostly nursing homes (2007–2010; Dutch End of Life in Dementia study, DEOLD). Results: Eight weeks after admission (baseline), 56.7% of 326 patients had a comfort care goal. At death, 89.5% had a comfort care goal. Adjusted for illness severity, patients with a baseline comfort care goal were more likely to have a religious affiliation, to be less competent to make decisions, and to have a short survival prediction. Their families were less likely to prefer life-prolongation and more likely to be satisfied with family–physician communication. Compared with patients with a comfort care goal established later during their stay, patients with a baseline comfort care goal also more frequently had a more highly educated family member. Conclusions: Initially, over half of the patients had a care goal focused on comfort, increasing to the large majority of the patients at death. Optimizing patient–family–physician communication upon admission may support the early establishing of a comfort care goal. Patient condition and family views play a role, and physicians should be aware that religious affiliation and education may also affect the (timing of) setting a comfort care goal. PMID:25226515

  16. [Psychosocial interventions in dementia].

    PubMed

    Kurz, A

    2013-01-01

    Psychosocial interventions improve cognitive abilities (cognitive stimulation, cognitive training), enhance emotional well-being (activity planning, reminiscence), reduce behavioral symptoms (aromatherapy, music therapy) and promote everyday functioning (occupational therapy). Through these effects they reinforce and augment pharmacological treatments for dementia. In addition, psychosocial interventions complement the treatment of patients by supporting family caregivers (educational groups, support programs). The potential of psychosocial interventions in dementia needs to be explored further in studies using improved methodology to determine effective components, clinical relevance and duration of effects, predictors of individual treatment response and health-economic implications.

  17. Dementia & Driving

    MedlinePlus

    ... Caregiver Resource Center Family Care Navigator Research Registry Support Groups Caregiver Stories Connections e-Newsletter FCA+(plus) Services ... be like if you could no longer drive. Support groups provide a good venue for both the caregivers ...

  18. Caregiver Stress

    MedlinePlus

    ... may take your loved one to an adult day care center or day hospital) The National Eldercare Locator , a service of the U.S. Administration on Aging, can help you find caregiving services in your area. You also can ... care and other caregiving services? Medicare, Medicaid, and private ...

  19. [Relation between dementia and circadian rhythm disturbance].

    PubMed

    Nakamura, Kei; Meguro, Kenichi

    2014-03-01

    Dementia and circadian rhythm disturbance are closely linked. First, dementia patient shows circadian rhythm disorders (e.g. insomnia, night wandering, daytime sleep). These symptoms are a burden for caregivers. Circadian rhythm disturbance of dementia relates ADL and cognitive impairment, and diurnal rhythm disorder of blood pressure and body temperature. Some study shows that circadian rhythm disorders in dementia are a disturbance of neural network between suprachiasmatic nucleus and cerebral white matter, and involvement of both frontal lobes, left parietal and occipital cortex, left temporoparietal region. The first-line treatment of circadian rhythm disturbance should be non-drug therapy (e.g. exercise, bright light exposure, reduce caffeine intake, etc.). If physician prescribe drugs, keep the rule of low-dose and short-term and avoid benzodiazepines. Atypical antipsychotic drugs like risperidone and some antidepressants are useful for treatment of insomnia in dementia. But this usage is off-label. So we must well inform to patient and caregiver, and get consent about treatment. Second, some study shows circadian rhythm disorder is a risk factor of dementia. However, we should discuss that circadian rhythm disturbance is "risk factor of dementia" or "prodromal symptom of dementia". If a clinician finds circadian rhythm disorder in elderly people, should be examined cognitive and ADL function, and careful about that patients have dementia or will develop dementia.

  20. Physical activity in caregivers: What are the psychological benefits?

    PubMed

    Loi, Samantha M; Dow, Briony; Ames, David; Moore, Kirsten; Hill, Keith; Russell, Melissa; Lautenschlager, Nicola

    2014-01-01

    Previous research demonstrates that physical activity has psychological benefits for people of all ages. However, it is unclear whether people caring for a frail or ill relative would derive similar psychological benefits, considering the potentially stressful caregiver role. This article reviews the current literature describing the effect of physical activity interventions on the psychological status of caregivers. A search from January 1975 to December 2012 identified five intervention studies investigating physical activity and psychological status in caregivers. These focused on female Caucasian caregivers who were older than 60 years. The physical activity interventions improved stress, depression and burden in caregivers, but small sample sizes, short-term follow up and varying results limited the generalizability of the findings. There were few trials investigating male caregivers, and most care-recipients were people with dementia. Studies with caregivers of different ages and gender, with a range of physical activity interventions, are needed to clarify whether physical activity has psychological benefits for caregivers.

  1. [Grieving among relatives and caregivers].

    PubMed

    Pascual, Angel María; Santamaría, Juan Luis

    2009-11-01

    This article provides a definition and description of grief, its characteristics, and the current explanatory models of this phenomenon (the stage model, task model, constructivist model and dual process model). The authors argue that a state of mourning in advance is produced in the process of dementia as a result of significant relational loss before death and describe the risk factors for complicated grief in caregivers: overload, lack of personal and material resources, delegation of care, and complex feelings such as guilt. The need for healthcare organizations to provide professional caregivers with the appropriate means to help with grief and to develop their own measures to prevent burnout is stressed. These measures could include protocols that provide bereavement intervention with the family, the primary caregiver, other patients and/or residents and the professional caregiving team. Finally, losses in persons with dementia must be taken into consideration, avoiding phenomena such as silencing and overprotection and encouraging acceptance and emotional support of their pain so that organic and emotional complications do not occur.

  2. Dementia-friendly communities’ and being dementia friendly in healthcare settings

    PubMed Central

    Lin, Shih-Yin

    2017-01-01

    Purpose of review This review discusses the concept of ‘dementia-friendly communities’ and summarizes the latest research and practice around such communities. This review also highlights important topic areas to be considered to promote dementia friendliness in healthcare settings. Recent findings Definitions of ‘dementia-friendly communities’ reflect the contemporary thinking of living with dementia (e.g., dementia as a disability, equal human rights, a sense of meaning). Existing research has covered a wide range of topic areas relevant to ‘dementia-friendly communities’. However, these studies remain qualitative and exploratory by nature and do not evaluate how dementia-friendly communities impact health and quality of life of people living with dementia and their caregivers. In healthcare settings, being dementia friendly can mean the inclusion of people with dementia in treatment discussion and decision-making, as well as the provision of first, adequate and appropriate service to people with dementia at an equivalent standard of any patient, second, person-centered care, and third, a physical environment following dementia-friendly design guidelines. Summary Research incorporating more robust study designs to evaluate dementia-friendly communities is needed. Being dementia-friendly in healthcare settings requires improvement in multiple areas – some may be achieved by environmental modifications while others may be improved by staff education. PMID:27997454

  3. The Impact of Caregiving on Caregivers' Medication Adherence and Appointment Keeping.

    PubMed

    Wang, XiaoRong; Robinson, Karen M; Hardin, Heather K

    2015-12-01

    The purpose of this study was to examine the relationships between care demands and caregivers' medication adherence and health appointment keeping. A cross-sectional correlational design was used to survey a convenience sample of 45 informal caregivers of persons with dementia. Pearson product-moment correlations and hierarchical multiple regressions were used to examine the relationships among study variables. Nearly one third of caregivers reported frequently or occasionally missing medication doses and nearly a half reported not being able to fully keep appointments with health care providers. Female gender, care duration, and care-recipient activities of daily living were significant predictors for medication adherence and appointment keeping. Caregivers' education and weekly caregiving hours contributed significantly to their medication adherence. Interventions are needed to help caregivers keep health appointments and adhere to their medications.

  4. Caregivers' Reasons for Nursing Home Placement: Clues for Improving Discussions with Families Prior to the Transition

    ERIC Educational Resources Information Center

    Buhr, Gwendolen T.; Kuchibhatla, Maragatha; Clipp, Elizabeth C.

    2006-01-01

    Purpose: This study identifies the relative importance of reasons for institutionalization endorsed by caregivers of patients with dementia; examines the relationship between caregivers' reasons for institutionalization and indicators of caregiver and patient physical and emotional functioning measured in the prior year; and compares, on these…

  5. Helping Memory-Impaired Elders: A Guide for Caregivers. A Pacific Northwest Extension Publication. PNW 314.

    ERIC Educational Resources Information Center

    Schmall, Vicki L.; Cleland, Marilyn

    This cooperative extension bulletin is designed to help family and professional caregivers understand dementia in later life and learn to cope more effectively with the changes resulting from a progressive dementing illness. The first three sections describe the differences between senility and dementia, causes of dementia, and adjustments that…

  6. Current issues in dementia pharmacotherapy.

    PubMed

    Daiello, Lori A

    2007-12-01

    Diagnosis and treatment of dementia in nursing homes and assisted living facilities remains challenging since response to treatment and disease course varies for the common degenerative dementias. Four cholinesterase inhibitors and an N-methyl-D-aspartate glutamate receptor antagonist are approved by the US Food and Drug Administration for the treatment of Alzheimer's disease (AD). Treatment with AD medications is clinically efficacious and associated with reduced caregiver burden. Some controlled trials have reported that cholinesterase inhibitors and memantine ameliorate dementia-related behavioral symptoms. Antipsychotic therapy is often used for intractable behavioral symptoms or psychosis not responding to nonpharmacologic interventions and antidementia medications; however, the risk/benefit ratio for each patient should be critically evaluated, because treatment with atypical antipsychotics has been associated with serious adverse events, including increased risk for death in older adults with dementia.

  7. Discipline in chaos: Foucault, dementia and aging in India.

    PubMed

    Brijnath, Bianca; Manderson, Lenore

    2008-12-01

    In India, care work for people in late-stage dementia is primarily conducted in the home. Using source material from urban India and drawing on Foucauldian theory, we illustrate the significance of three power/knowledge scripts in this context: social and cultural notions of acceptable, public bodies; medicalized forms of care; and the cultural contexts of the individual caregivers. The caregiver is the embodiment of these discourses and is charged with the task of mapping discipline onto inherently undisciplinable bodies. A tension exists between the caregiver's struggle to contain the unruliness of the person with dementia and, simultaneously, to act as a broker between the world of the care-recipient and the social world. We conclude that although the caregiver is the starting point for the exercise of discipline, the three power/knowledge scripts that inform care work are as much about surveying, routinizing and mobilizing caregivers' bodies as they are about disciplining the bodies of people with dementia.

  8. The influence of relationships on personhood in dementia care: a qualitative, hermeneutic study

    PubMed Central

    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

  9. Family Caregiver Alliance

    MedlinePlus

    ... on your schedule. Look for our launch soon! FAMILY CARE NAVIGATOR ─ Click on Your State AL AK ... Group) Smart Patients Caregivers Community In partnership with Family Caregiver Alliance Learn more Caregiver Research Caregivers exhibit ...

  10. Vascular Dementia

    MedlinePlus

    ... attack) may increase your risk of developing dementia. Atherosclerosis. This condition occurs when deposits of cholesterol and ... in your arteries and narrow your blood vessels. Atherosclerosis can increase your risk of vascular dementia — and ...

  11. The Prevalence, Correlates and Impact of Dementia in Cuba

    PubMed Central

    Llibre Rodríguez, J.; Valhuerdi, A.; Sanchez, l.l.; Reyna, C.; Guerra, M.A.; Copeland, J.R.M.; McKeigue, P.; Ferri, C.P.; Prince, M.J.

    2008-01-01

    Background We aimed to estimate the prevalence, correlates and impact of dementia in Havana and Matanzas, Cuba. Methods A 1-phase catchment area survey of all over 65-year-old residents of 7 catchment areas in Havana and 1 in Matanzas was conducted. Dementia diagnosis was established according to DSM-IV and our own, pre-validated10/66 criteria. The impact of dementia was assessed through associations with needs for care, cutting back on work to care and caregiver psychological morbidity. Results We interviewed 2,944 older people, a response proportion of 96.4%. The prevalence of DSM-IV dementia was 6.4% and that of 10/66 dementia 10.8%. Both dementia outcomes were associated with older age, less education, a family history of dementia, shorter leg length and smaller skull circumference. Dementia, rather than physical health problems or depression, was the main contributor to needs for care (population-attributable prevalence fraction = 64.6%) and caregiver cutting back on work (population-attributable prevalence fraction = 57.3%). Conclusion The prevalence of dementia in Cuba is similar to Europe. Among health conditions, dementia is the major contributor to dependency and caregiver economic and psychological strain. More attention needs to be given to it and other chronic diseases associated more with disability than premature mortality. PMID:18931519

  12. Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap.

    PubMed

    Holroyd-Leduc, Jayna M; McMillan, Jacqueline; Jette, Nathalie; Brémault-Phillips, Suzette C; Duggleby, Wendy; Hanson, Heather M; Parmar, Jasneet

    2017-03-01

    Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

  13. Neuropsychiatric management of young-onset dementias.

    PubMed

    Shinagawa, Shunichiro

    2015-06-01

    A combination of pharmacologic and nonpharmacologic approaches is necessary for the appropriate neuropsychiatric management of patients with young-onset dementia. Nonpharmacologic interventions, including psychological management, environmental strategies, and caregiver's support, should be the first choice for neuropsychiatric management. Pharmacologic interventions differ according to the underlying causes of dementia; thus, differential diagnoses are very important. Antipsychotics should be prescribed carefully; they should be used for the shortest time possible, at the lowest possible dose.

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

    PubMed

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

    2012-01-01

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

  15. Caregiving for Alzheimer's Disease or Other Dementia

    MedlinePlus

    ... Recommendations The Guide State & Local Planning Examples GIS Mapping Data Sources Registries Sheltering Communication & Messaging Planning for ... General Information about the Older Adult Population Healthy Brain Initiative Healthy Brain Research Network Road Map Logic ...

  16. Naturalistic Enactment to Elicit and Recognize Caregiver State Anxiety.

    PubMed

    Miranda, Darien; Favela, Jesus; Ibarra, Catalina; Cruz, Netzahualcoyotl

    2016-09-01

    Caring for people with dementia imposes significant stress on family members and caregivers. Often, these informal caregivers have no coping strategy to deal with these behaviors. Anxiety and stress episodes are often triggered by problematic behaviors exhibited by the person who suffers from dementia. Detecting these behaviors could help them in dealing with them and reduce caregiver burden. However, work on anxiety detection using physiological signals has mostly been done under controlled conditions. In this paper we describe an experiment aimed at inducing anxiety among caregivers of people with dementia under naturalistic conditions. We report an experiment, using the naturalistic enactment technique, in which 10 subjects were asked to care for an older adult who acts as if she experiences dementia. We record physiological signals from the participants (GSR, HR, EEG) during the sessions that lasted for approximately 30 min. We explain how we obtained ground truth from self-report and observation data. We conducted two different tests using the Support Vector Machine technique. We obtained an average precision of 77.8 % and 38.1 % recall when classifying two different possible states: "Anxious" and "Not anxious". Analysis of the data provides evidence that the experiment elicits state anxiety and that it can be detected using wearable sensors. Furthermore, if episodes of problematic behaviors can also be detected, the recognition of anxiety in the caregiver can be improved, leading to the enactment of appropriate interventions to help caregivers cope with anxiety episodes.

  17. Knowledge, Attitudes, and Clinical Practices for Patients With Dementia Among Mental Health Providers in China: City and Town Differences.

    PubMed

    Hsiao, Hsin-Yi; Liu, Zhaorui; Xu, Ling; Huang, Yueqin; Chi, Iris

    2016-01-01

    Mental health providers are the major resource families rely on when experiencing the effects of dementia. However, mental health resources and manpower are inadequate and unevenly distributed between cities and towns in China. This study was conducted to examine similarities and differences in knowledge, attitudes, and clinical practices concerning dementia and working with family caregivers from mental health providers' perspectives in city versus town settings. Data were collected during focus group discussions with 40 mental health providers in the Xicheng (city) and Daxing (town) districts in Beijing, China in 2011. Regional disparities between providers' knowledge of early diagnosis of dementia and related counseling skills were identified. Regional similarities included training needs, dementia-related stigma, and low awareness of dementia among family caregivers. Culturally sensitive education specific to dementia for mental health providers and a specialized dementia care model for people with dementia and their family caregivers are urgently needed. Implications for geriatric practitioners and educators are discussed.

  18. Apraxias in Neurodegenerative Dementias

    PubMed Central

    Chandra, Sadanandavalli Retnaswami; Issac, Thomas Gregor; Abbas, Mirza Masoom

    2015-01-01

    Background: Apraxia is a state of inability to carry out a learned motor act in the absence of motor, sensory or cerebellar defect on command processed through the Praxis circuit. Breakdown in default networking is one of the early dysfunction in cortical dementias and result in perplexity, awkwardness, omission, substitution errors, toying behavior and unrecognizable gestures in response to command with voluntary reflex dissociation where, when unobserved patient will carry out reflex movements normally. Awareness into the organicity of these phenomenas will help in early diagnosis, which will help in initiating appropriate treatment and slowing down the progression of the disease. Aims and Objectives: The aim was to look for the various kinds of apraxias in patients with dementia using appropriate simple tests. Patients and Methods: Three hundred patients satisfying Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition criteria for dementia were evaluated in detail with mandatory investigations for dementia followed by testing for ideational, ideomotor, limb-kinetic, buccopharyngeal, dressing apraxia, constructional apraxia and gait apraxias in addition to recording of rare apraxias when present. Results: Alzheimer's disease showed maximum association with apraxias in all the phases of the disease ideational, ideomotor, dressing and constructional apraxias early and buccopharyngeal and gait apraxia late. Frontotemporal lobe dementia showed buccopharyngeal and gait apraxias late into the disease. Cortical basal ganglionic degeneration showed limb apraxias and diffuse Lewy body disease showed more agnosias and less apraxias common apraxias seen was Ideational and Ideomotor. Conclusion: Recognition of the apraxias help in establishing organicity, categorization, caregiver education, early strategies for treatment, avoiding anti-psychotics and introducing disease modifying pharmacotherapeutic agents and also prognosticating. PMID:25722511

  19. Management of behavioral symptoms in progressive degenerative dementias.

    PubMed

    Volicer, Ladislav; Hurley, Ann C

    2003-09-01

    Management of behavioral symptoms of Alzheimer's disease and other progressive degenerative dementias poses continuous challenge to both family and professional caregivers. Behavioral symptoms are complex in nature and require that caregivers understand their presumed causes and intervene appropriately using validated caregiving techniques. Unfortunately, confusing terminology hampers improvement in management techniques. This review attempts to clarify terminology and specifically the behavioral symptoms "agitation" and "resistiveness to care" that require different management techniques. Several conceptual frameworks for behavioral symptoms of dementia are presented. These frameworks include behavioral models, a psychiatric model, and a comprehensive model that combines both behavioral and psychiatric strategies. Using precise terminology consistently and providing care based on a conceptual framework will facilitate the education of caregivers in appropriate techniques for management of behavioral symptoms of dementias.

  20. Risk of Cognitive and Functional Impairment in Spouses of People With Dementia: Evidence From the Health and Retirement Study.

    PubMed

    Pertl, Maria M; Lawlor, Brian A; Robertson, Ian H; Walsh, Cathal; Brennan, Sabina

    2015-12-01

    Caring for a spouse with dementia is a chronic stressor that may compromise caregivers' own cognitive functioning and capacity to provide adequate care. We examined whether having (i) a spouse with dementia and (ii) a spouse who requires assistance with activities of daily living predicted cognitive and functional impairments in respondents to the Health and Retirement Study (n = 7965). Respondents who had a spouse who requires care had poorer cognitive functioning, whereby this relationship was significantly stronger for male respondents. Having a spouse with dementia moderated the relationship between income and cognition and predicted caregiver functional impairment, though not when depression was controlled. Although we found no significant differences on any individual cognitive domains between 179 dementia caregivers and sociodemographically matched noncaregivers, our findings suggest that caregivers, especially men, and low-income individuals who have a spouse with dementia are more vulnerable to adverse cognitive outcomes. Targeting depression in spouses of people with dementia may help to prevent functional impairments.

  1. Sleep, Cognition and Dementia.

    PubMed

    Porter, Verna R; Buxton, William G; Avidan, Alon Y

    2015-12-01

    The older patient population is growing rapidly around the world and in the USA. Almost half of seniors over age 65 who live at home are dissatisfied with their sleep, and nearly two-thirds of those residing in nursing home facilities suffer from sleep disorders. Chronic and pervasive sleep complaints and disturbances are frequently associated with excessive daytime sleepiness and may result in impaired cognition, diminished intellect, poor memory, confusion, and psychomotor retardation all of which may be misinterpreted as dementia. The key sleep disorders impacting patients with dementia include insomnia, hypersomnolence, circadian rhythm misalignment, sleep disordered breathing, motor disturbances of sleep such as periodic leg movement disorder of sleep and restless leg syndrome, and parasomnias, mostly in the form of rapid eye movement (REM) sleep behavior disorder (RBD). RBD is a pre-clinical marker for a class of neurodegenerative diseases, the "synucleinopathies", and requires formal polysomnographic evaluation. Untreated sleep disorders may exacerbate cognitive and behavioral symptoms in patients with dementia and are a source of considerable stress for bed partners and family members. When left untreated, sleep disturbances may also increase the risk of injury at night, compromise health-related quality of life, and precipitate and accelerate social and economic burdens for caregivers.

  2. Direct costs of dementia in nursing homes

    PubMed Central

    Caravau, Hilma; Martín, Ignacio

    2015-01-01

    Dementia represents an economical burden to societies nowadays. Total dementia expenses are calculated by the sum of direct and indirect costs. Through the stages of the diseases, as the patients may require institutionalization or a formal caregiver, the direct costs tend to increase. This study aims to analyze the direct costs of dementia in Portuguese nursing homes in 2012, compare the spending between seniors with and without dementia, and propose a predictive costs model. The expenses analysis was based on (1) the use of emergency rooms and doctor's appointments, either in public or private institutions; (2) days of hospitalization; (3) medication; (4) social services use; (5) the need for technical support; and (6) the utilization of rehabilitation services. The sample was composed of 72 people, half with dementia and half without. The average annual expense of a patient with dementia was €15,287 thousand, while the cost of a patient without dementia was about €12,289 thousand. The variables “ability to make yourself understood,” “self-performance: getting dressed” and “thyroid disorders” were found to be statistically significant in predicting the expenses' increase. In nursing homes, in 2012, the costs per patient with dementia were 1, 2 times higher than per patient without dementia. PMID:26283959

  3. Estimating the economic and social costs of dementia in Ireland.

    PubMed

    Connolly, Sheelah; Gillespie, Paddy; O'Shea, Eamon; Cahill, Suzanne; Pierce, Maria

    2014-01-01

    Dementia is a costly condition and one that differs from other conditions in the significant cost burden placed on informal caregivers. The aim of this analysis was to estimate the economic and social costs of dementia in Ireland in 2010. With an estimate of 41,470 people with dementia, the total baseline annual cost was found to be over €1.69 billion, 48% of which was attributable to the opportunity cost of informal care provided by family and friends and 43% to residential care. Due to the impact of demographic ageing in the coming decades and the expected increase in the number of people with dementia, family caregivers and the general health and social care system will come under increasing pressure to provide adequate levels of care. Without a significant increase in the amount of resources devoted to dementia, it is unclear how the system will cope in the future.

  4. Content and Quality of Information Provided on Canadian Dementia Websites

    PubMed Central

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

    2013-01-01

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

  5. DEMENTIA CARE IN ASSISTED LIVING: NEEDS AND CHALLENGES

    PubMed Central

    Smith, Marianne; Buckwalter, Kathleen C.; Kang, Hyunwook; Ellingrod, Vicki; Schultz, Susan K.

    2011-01-01

    Assisted living (AL) is an increasingly popular long-term care option for older adults with dementia. Recent reports suggest that as many as 68% of AL residents have dementia, and that frequency of both behavioral symptoms and psychotropic medications are high. This pilot project explored the feasibility of research methods for use in AL facilities. Findings suggest that most AL residents with dementia have moderate to severe dementia, and the majority are taking one or more psychotropic medication. Descriptive and qualitative findings related to health records, caregiver perceptions of behavioral symptoms, and practicality of assessment methods undertaken are described and implications for psychiatric nursing practice and research are reviewed. PMID:18649209

  6. Exemplary Care as a Mediator of the Effects of Caregiver Subjective Appraisal and Emotional Outcomes

    ERIC Educational Resources Information Center

    Harris, Grant M.; Durkin, Daniel W.; Allen, Rebecca S.; DeCoster, Jamie; Burgio, Louis D.

    2011-01-01

    Purpose: Exemplary care (EC) is a new construct encompassing care behaviors that warrants further study within stress process models of dementia caregiving. Previous research has examined EC within the context of cognitively intact older adult care recipients (CRs) and their caregivers (CGs). This study sought to expand our knowledge of quality of…

  7. Family Caregiving: Impact of Patient Functioning and Underlying Causes of Dependency.

    ERIC Educational Resources Information Center

    Silliman, Rebecca A.; Sternberg, Josef

    1988-01-01

    Notes that diseases affect health and functional status of patients in different ways and have variable impacts on family caregivers. Using hip fracture, dementia, and stroke as examples, illustrates how physical, social, psychological, and cognitive disabilities place different demands on caregivers. (Author)

  8. May I Recruit through Your Agency? Considerations for Researchers of Spousal Caregivers

    ERIC Educational Resources Information Center

    Pote, Steven

    2016-01-01

    Few resources within social science literature provide helpful information related to participant recruitment for research on spousal caregivers of individuals with dementia. Independent researchers with limited resources may not have access to large databases or centers in which access to caregivers is readily available. As a result, these…

  9. Mental health and sleep of older wife caregivers for spouses with Alzheimer's disease and related disorders.

    PubMed

    Willette-Murphy, Karen; Todero, Catherine; Yeaworth, Rosalee

    2006-10-01

    This descriptive study examined sleep and mental health variables in 37 older wife caregivers for spouses with dementia compared to 37 age-matched controls. The relationships among selected caregiving variables (behavioral problems, caregiving hours, and years of caregiving), appraisal of burden, self-reported sleep efficiency for the past week, and mental health outcomes were examined. Lazarus and Folkman's stress and coping framework guided the study. Mental health and sleep were poorer for caregivers. Caregiving and appraisal of burden variables showed direct and indirect effects on mental health. However, caregiving and appraisal of burden variables were not significant for predicting sleep efficiency. Sleep efficiency was a good predictor of mental health in this sample of wife caregivers.

  10. Sexuality and Dementia

    MedlinePlus

    ... 30 Smart Patients Caregivers Community In partnership with Family Caregiver Alliance Learn more CAREGIVER STORIES With Far ... 950 | San Francisco, CA 94104 Copyright © 1996–2016 Family Caregiver Alliance. All rights reserved.

  11. Differences of Behavioral and Psychological Symptoms of Dementia in Disease Severity in Four Major Dementias

    PubMed Central

    Kazui, Hiroaki; Yoshiyama, Kenji; Kanemoto, Hideki; Suzuki, Yukiko; Sato, Shunsuke; Hashimoto, Mamoru; Ikeda, Manabu; Tanaka, Hibiki; Hatada, Yutaka; Matsushita, Masateru; Nishio, Yoshiyuki; Mori, Etsuro; Tanimukai, Satoshi; Komori, Kenjiro; Yoshida, Taku; Shimizu, Hideaki; Matsumoto, Teruhisa; Mori, Takaaki; Kashibayashi, Tetsuo; Yokoyama, Kazumasa; Shimomura, Tatsuo; Kabeshita, Yasunobu; Adachi, Hiroyoshi; Tanaka, Toshihisa

    2016-01-01

    Background/Aims Behavioral and psychological symptoms of dementia (BPSDs) negatively impact the prognosis of dementia patients and increase caregiver distress. The aims of this study were to clarify the differences of trajectories of 12 kinds of BPSDs by disease severity in four major dementias and to develop charts showing the frequency, severity, and associated caregiver distress (ACD) of BPSDs using the data of a Japan multicenter study (J-BIRD). Methods We gathered Neuropsychiatric Inventory (NPI) data of patients with Alzheimer’s disease (AD; n = 1091), dementia with Lewy bodies (DLB; n = 249), vascular dementia (VaD; n = 156), and frontotemporal lobar degeneration (FTLD; n = 102) collected during a 5-year period up to July 31, 2013 in seven centers for dementia in Japan. The NPI composite scores (frequency × severity) of 12 kinds of items were analyzed using a principal component analysis (PCA) in each dementia. The factor scores of the PCA were compared in each dementia by disease severity, which was determined with Clinical Dementia Rating (CDR). Results Significant increases with higher CDR scores were observed in 1) two of the three factor scores which were loaded for all items except euphoria in AD, 2) two of the four factor scores for apathy, aberrant motor behavior (AMB), sleep disturbances, agitation, irritability, disinhibition, and euphoria in DLB, and 3) one of the four factor scores for apathy, depression, anxiety, and sleep disturbances in VaD. However, no increases were observed in any of the five factor scores in FTLD. Conclusions As dementia progresses, several BPSDs become more severe, including 1) apathy and sleep disturbances in AD, DLB, and VaD, 2) all of the BPSDs except euphoria in AD, 3) AMB, agitation, irritability, disinhibition, and euphoria in DLB, and 4) depression and anxiety in VaD. Trajectories of BPSDs in FTLD were unclear. PMID:27536962

  12. Laughter, communication problems and dementia.

    PubMed

    Lindholm, Camilla

    2008-01-01

    This article investigates how the elderly with dementia and their professional caregivers use laughter as a device to deal with problems related to language production and comprehension. The data consist of two game-playing situations, used to engage the elderly people in memory work. The article shows how the elderly patients recurrently laugh to acknowledge communication difficulties and to show awareness of their potential non-competency. The professional caregivers are shown to use slightly different strategies for responding to laughter segments initiated by the patients, either making the shortcomings part of the conversation or avoiding referring to the lapse explicitly. The laughter strategies used by the patients are compared to those reported in the CA-literature on laughter. It is well known that laughter is used in sequences of trouble and delicacy in both ordinary and institutional contexts, but my study shows that speakers with dementia laugh when they encounter problems related to language production and comprehension. This functional expansion in relation to premorbid occurrence is evidence that laughter fits the definition of compensatory behaviour utilized to overcome communication barriers. Certain conversational skills are preserved in individuals with dementia, but due to their cognitive impairment these resources are utilized in a slightly different way than by healthy speakers.

  13. Mixed Dementia

    MedlinePlus

    ... with Lewy bodies , What Is Alzheimer's? NIA-Funded Memory & Aging Project Reveals Mixed Dementia Common Data from ... commonly with Alzheimer's disease. For example, in the Memory and Aging Project study involving long-term cognitive ...

  14. Vascular dementia

    MedlinePlus

    ... to dementia. Risk factors for VaD include: Diabetes Hardening of the arteries ( atherosclerosis ) High blood pressure ( hypertension ) ... Control conditions that increase the risk of hardening of the ... saturated fats and salt in the diet Treating related disorders

  15. [Informing of the diagnosis in dementia].

    PubMed

    Robles, María José; Cucurella, Eulàlia; Formiga, Francesc; Fort, Isabel; Rodríguez, Daniel; Barranco, Elena; Catena, Joan; Cubí, Dolors

    2011-01-01

    Dementia is a syndrome characterized by a progressive deterioration of cognitive functions, accompanied by psychiatric symptoms and behavioral disturbances that produce a progressive and irreversible disability. The way it should communicate the diagnosis of dementia is a key discussion point on which there is no unanimous agreement so far. The communicating of the diagnosis of dementia is a complex issue that affects not only, the patient but also to caregivers and health professionals who care and must conform to the ethical principles governing medical practice (autonomy, nonmaleficence, beneficence, and justice). Therefore, from the Dementia Working Group of the Catalan Geriatric Society (Grupo de Trabajo de Demencia de la Sociedad Catalana de Geriatría) arises the need to review the issue and propose a course of action for the disclosure of diagnosis.

  16. Consumption of Drugs and Nonpharmacological Therapies in Caregivers of Patients with Alzheimer's Disease: A Case-Control Study in Madrid

    PubMed Central

    Martín-García, Raquel; Martín-Avila, Guillermo; la Rubia-Marcos, María De; Maroto-Rodríguez, Raquel; Ortega-Angulo, Celia; Carreras Rodriguez, María Teresa; Abad Santos, Francisco; Gago Veiga, Ana Beatriz

    2016-01-01

    Background Dementia is a neurodegenerative disease whose prevalence is rising, and the need for assistance to patients becomes indispensable. The different types of dementia and their treatments have been widely studied; however, the health status of caregivers also requires our attention. Objective The aim of our research was to evaluate whether caregivers of patients with dementia consume more medications than the general population, indicating underlying pathologies. Methods A total of 91 caregivers of dementia patients were interviewed and their answers were compared with those from a control group of 48 people, taking into account demographic data, characteristics of patients and caregivers, pharmacological and nonpharmacological treatments and burden. Results Caregivers showed a significantly higher consumption of anxiolytics, antidepressants and antiplatelets (22.3, 13.2 and 11%, respectively) than the control group (14.6, 0 and 0%, respectively). Moreover, 45.1% of the caregivers used nonpharmacological therapies compared with 6.2% of the control group. There was a tendency to take more medications in those caregivers suffering from burden and those who had to take care of patients with behavioral changes. Conclusion Caregivers of dementia patients need more pharmacological and nonpharmacological therapies. They are a risk group that needs better care from the health system. PMID:27065471

  17. When LVAD Patients Die: The Caregiver's Mourning.

    PubMed

    Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo

    2016-05-01

    Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning.

  18. Clinical features and multidisciplinary approaches to dementia care

    PubMed Central

    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

  19. The Concept of Missing Incidents in Persons with Dementia

    PubMed Central

    Rowe, Meredeth; Houston, Amy; Molinari, Victor; Bulat, Tatjana; Bowen, Mary Elizabeth; Spring, Heather; Mutolo, Sandra; McKenzie, Barbara

    2015-01-01

    Behavioral symptoms of dementia often present the greatest challenge for informal caregivers. One behavior, that is a constant concern for caregivers, is the person with dementia leaving a designated area such that their whereabouts become unknown to the caregiver or a missing incident. Based on an extensive literature review and published findings of their own research, members of the International Consortium on Wandering and Missing Incidents constructed a preliminary missing incidents model. Examining the evidence base, specific factors within each category of the model were further described, reviewed and modified until consensus was reached regarding the final model. The model begins to explain in particular the variety of antecedents that are related to missing incidents. The model presented in this paper is designed to be heuristic and may be used to stimulate discussion and the development of effective preventative and response strategies for missing incidents among persons with dementia. PMID:27417817

  20. Identity cues and dementia in nursing home intervention

    PubMed Central

    Vézina, Aline; Robichaud, Line; Voyer, Philippe; Pelletier, Daniel

    2013-01-01

    This study examines the identity cues that family caregivers and healthcare personnel use with seniors living with dementia and living in nursing homes. The identity cues represent biographical knowledge used to stimulate the dementia sufferer, trigger signals and incite interaction. Our grounded approach hinges on three objectives: to identify and categorize identity cues; to document their uses; and to gain a better understanding of their effectiveness. We interviewed nine family caregivers and 12 healthcare workers. Qualitative data indicates that the participants use identity cues that evoke seniors’ sociological, relational and individual characteristics. These identity cues play a central role in communication and constitute important information that the family caregivers can share with healthcare personnel. They sustain memory, facilitate care and reinforce seniors’ self-value. These results help to define identity, foster a greater role for family caregivers, and constitute a sound basis for the implementation of personalized interventions. PMID:21849743

  1. Forecasting the Incidence of Dementia and Dementia-Related Outpatient Visits With Google Trends: Evidence From Taiwan

    PubMed Central

    2015-01-01

    ). Conclusions Google Trends established a plausible relationship between search terms and new dementia cases and dementia-related outpatient visits in Taiwan. This data may allow the health care system in Taiwan to prepare for upcoming outpatient and dementia screening visits. In addition, the validated search term results can be used to provide caregivers with caregiving-related health, skills, and social welfare information by embedding dementia-related search keywords in relevant online articles. PMID:26586281

  2. Cross-cultural caregiving and the temporal dimension.

    PubMed

    Escandon, Socorro

    2013-11-01

    The caregiving research literature has explored and documented findings from psychological, clinical, and policy/program perspectives, but little is known regarding the contextual perspectives of caregiving. Temporal factors influence the structure and functioning of the caregiving family. The proposed paradigm adaptation extends a contextual perspective that addresses the exploration of the caregiving process as a temporal, dynamic, progressive process over time, in which decisions made by caregivers may not always be based on observable tasks but, nevertheless, may have important consequences. When cultures cross, attitudes and behaviors are modified, resulting from contact with a different set of values and beliefs. Cross-cultural research aims to explore these changes that take place over time. Future research should consider the inclusion of measures that assess the temporal aspect of caregiving and the acculturation considerations of family caregivers. These measures are especially needed because of the increased influence of international migration, economic globalization, and political conflicts in today's multicultural societies.

  3. Gender differences in caregiving among family - caregivers of people with mental illnesses

    PubMed Central

    Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep

    2016-01-01

    All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly

  4. [Training and representation of dementia of workers in nursing homes].

    PubMed

    Sanchez, Stéphane; Gallin, Aurélie; Stefanuto, Muriel; Treffel, Sylvie; Antoine, Marc; Denormandie, Philippe

    2016-01-01

    Training could be a lever for improving the quality of care of residents with dementia in nursing homes by changing social representations. Beyond a simple assessment of acquired knowledge, a change of social representations could be indicative of a true appropriation of the content of the training. A study was carried out to assess the impact of training on nursing home caregivers' representations of dementia and Alzheimer's disease.

  5. Understanding senile dementia: a challenge for the future.

    PubMed

    Storandt, M

    1983-01-01

    The causes of dementia in later life are reviewed. Special attention is paid to senile dementia of the Alzheimer's type, its prevelance, the characteristic structural changes in the brains of persons suffering from this disorder, and the hypothesized causes of the disease. The hypothesis that Alzheimer's disease represents accelerated aging is described. Treatment issues are discussed, primarily in terms of supportive environments, differential diagnosis, and assistance to the caregiver.

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

    ERIC Educational Resources Information Center

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

    2012-01-01

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

  7. 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…

  8. Feasibility of Machine-Based Prompting to Assist Persons with Dementia

    ERIC Educational Resources Information Center

    Bewernitz, Megan Witte; Mann, William C.; Dasler, Patricia; Belchior, Patricia

    2009-01-01

    Nearly 14% of people over age 71 have some form of dementia, with prevalence increasing to nearly 40% of those over age 90. As dimentia progresses, it impacts a person's independent functions and can increase the burden on caregivers. The use of assistive devices can help individuals with dementia live more independently. However, older…

  9. Impact of an activities-based adult dementia care program

    PubMed Central

    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

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

    PubMed

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

    2006-10-01

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

  11. Specialist nursing and community support for the carers of people with dementia living at home: an evidence synthesis.

    PubMed

    Bunn, Frances; Goodman, Claire; Pinkney, Emma; Drennan, Vari M

    2016-01-01

    Specialist nurses are one way of providing support for family carers of people with dementia, but relatively little is known about what these roles achieve, or if they are more effective than roles that do not require a clinical qualification. The aim of this review was to synthesise the literature on the scope and effectiveness of specialist nurses, known as Admiral Nurses, and set this evidence in the context of other community-based initiatives to support family carers of people with dementia. We undertook a systematic review of the literature relating to the scope and effectiveness of Admiral Nurses and a review of reviews of interventions to support the family carers of people with dementia. To identify studies, we searched electronic databases, undertook lateral searches and contacted experts. Searches were undertaken in November 2012. Results are reported narratively with key themes relating to Admiral Nurses identified using thematic synthesis. We included 33 items relating to Admiral Nurses (10 classified as research) and 11 reviews evaluating community-based support for carers of people with dementia. There has been little work to evaluate specific interventions provided by Admiral Nurses, but three overarching thematic categories were identified: (i) relational support, (ii) co-ordinating and personalising support and (iii) challenges and threats to the provision of services by Admiral Nurses. There was an absence of clearly articulated goals and service delivery was subject to needs of the host organisation and the local area. The reviews of community-based support for carers of people with dementia included 155 studies but, in general, evidence that interventions reduced caregiver depression or burden was weak, although psychosocial and educational interventions may reduce depression in carers. Community support for carers of people with dementia, such as that provided by Admiral Nurses, is valued by family carers, but the impact of such initiatives is

  12. Caregiving and Ethnicity.

    ERIC Educational Resources Information Center

    Glicksman, Allen

    This research examined the relationship between ethnicity and the psychological status and behavior of Jewish and non-Jewish caregivers in relation to the impaired elderly. It was hypothesized that Jewish caregivers would make significantly more use of formal services than non-Jewish (usually Christian) caregivers. Two separate data sets were…

  13. Transitions in Spousal Caregiving.

    ERIC Educational Resources Information Center

    Burton, Lynda C.; Zdaniuk, Bozena; Schulz, Richard; Jackson, Sharon; Hirsch, Calvin

    2003-01-01

    Describes transitions over 5 years among community-dwelling elderly spouses into and within caregiving roles and associated health outcomes. The trajectory of health outcomes associated with caregiving was generally downward. Those who transitioned to heavy caregiving had more symptoms of depression, and poorer self-reported health and health…

  14. Early-Stage Caregiving

    MedlinePlus

    ... dementia. For example, if you know that grocery shopping will be frustrating for the person with dementia, ... going through. Learn more about in-person and online support groups. Ask for and accept help. Care ...

  15. Use of a multiparty web based videoconference support group for family caregivers: Innovative practice.

    PubMed

    Austrom, Mary Guerriero; Geros, Kristin N; Hemmerlein, Kimberly; McGuire, Siobhan M; Gao, Sujuan; Brown, Steven A; Callahan, Christopher M; Clark, Daniel O

    2015-09-01

    This article describes a pilot of a weekly web based videoconference support group for five caregivers of persons with dementia. All participants reported positive views of the group and videoconference medium. Improvements in caregiver anxiety, depression, and physical health scores were observed. Depression scores remained the same with difficulties experienced by the caregiver increasing slightly. Self-efficacy for controlling upsetting thoughts and responding to disruptive behavior improved but worsened slightly for obtaining respite. We concluded that web based support was a positive experience for caregivers, providing them with an acceptable, feasible, low-cost technological alternative to in person support that reduced barriers to attendance by being available in homes.

  16. The experience of providing end-of-life care to a relative with advanced dementia: an integrative literature review.

    PubMed

    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.

  17. A Randomized Trial of a CAM Therapy for Stress Reduction in American Indian and Alaskan Native Family Caregivers

    ERIC Educational Resources Information Center

    Korn, Leslie; Logsdon, Rebecca G.; Polissar, Nayak L.; Gomez-Beloz, Alfredo; Waters, Tiffany; Ryser, Rudolph

    2009-01-01

    Purpose: Although it is widely recognized that caregivers of individuals with dementia experience elevated stress that places them at increased risk for health problems, little is known about how caregiving stress may be alleviated among underserved ethnic minority populations. The purpose of this study was to compare a complementary and…

  18. Vascular dementia

    PubMed Central

    Korczyn, Amos D; Vakhapova, Veronika; Grinberg, Lea T

    2012-01-01

    The epidemic grow of dementia causes great concern for the society. It is customary to consider Alzheimer’s disease (AD) as the most common cause of dementia, followed by vascular dementia (VaD). This dichotomous view of a neurodegenerative disease as opposed to brain damage caused by extrinsic factors led to separate lines of research in these two entities. Indeed, accumulated data suggest that the two disorders have additive effects and probably interact; however it is still unknown to what degree. Furthermore, epidemiological studies have shown “vascular” risk factors to be associated with AD. Therefore, a clear distinction between AD and VaD cannot be made in most cases, and is furthermore unhelpful. In the absence of efficacious treatment for the neurodegenerative process, special attention must be given to vascular component, even in patients with presumed mixed pathology. Symptomatic treatment of VaD and AD are similar, although the former is less effective. For prevention of dementia it is important to treat aggressively all factors, even in stroke survivors who do not show evidence of cognitive decline,. In this review, we will give a clinical and pathological picture of the processes leading to VaD and discuss it interaction with AD. PMID:22575403

  19. Improving Dementia Long-Term Care: A Policy Blueprint.

    PubMed

    Shih, Regina A; Concannon, Thomas W; Liu, Jodi L; Friedman, Esther M

    2014-01-01

    In 2010, 15 percent of Americans older than age 70 had dementia, and the number of new dementia cases among those 65 and older is expected to double by the year 2050. As the baby boomer generation ages, many older adults will require dementia-related long-term services and supports (LTSS). This blueprint is the only national document to date that engages local, state, and national stakeholders to specifically focus on policy options at the intersection of dementia and LTSS. The authors undertook five major tasks that resulted in a prioritized list of policy options and research directions to help decisionmakers improve the dementia LTSS delivery system, workforce, and financing. These were to (1) identify weaknesses in the LTSS system that may be particularly severe for persons with dementia; (2) review national and state strategies addressing dementia or LTSS policy; (3) identify policy options from the perspective of a diverse group of stakeholders; (4) evaluate the policy options; and (5) prioritize policy options by impact and feasibility. Stakeholders identified 38 policy options. RAND researchers independently evaluated these options against prespecified criteria, settling on 25 priority options. These policy options can be summarized into five objectives for the dementia LTSS system: (1) increase public awareness of dementia to reduce stigma and promote earlier detection; (2) improve access to and use of LTSS; (3) promote high-quality, person- and caregiver-centered care; (4) provide better support for family caregivers of people with dementia; and (5) reduce the burden of dementia LTSS costs on individuals and families. This policy blueprint provides a foundation upon which to build consensus among a larger set of stakeholders to set priorities and the sequencing of policy recommendations.

  20. Land of forgetfulness: dementia care as spiritual formation.

    PubMed

    Ewing, Wayne A

    2005-01-01

    The personal circumstances of dementia caregiving are sometimes experienced as so severely demanding as to be overwhelming. While sustenance within, and recovery from these experiences are increasingly addressed in helpful ways from psychological, emotional, and practical life planning frames of reference, we are still learning how to speak with one another about the spiritual dimensions of this peculiar journey. From a spiritual perspective, the caregiver initially, and frequently perpetually, finds her/himself in a state of spiritual exhaustion. Oddly enough, there are ample resources at hand to address this existential state with wisdom and grace, allowing for the possibility that the caregiver might move from spiritual weariness to enhanced spiritual formation.

  1. Dementia beyond 2025: Knowledge and uncertainties.

    PubMed

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

    2016-01-01

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

  2. Neuropsychiatric symptoms of the elderly with Alzheimer's disease and the family caregivers' distress 1

    PubMed Central

    Storti, Luana Baldin; Quintino, Débora Teles; Silva, Natália Michelato; Kusumota, Luciana; Marques, Sueli

    2016-01-01

    ABSTRACT Objective: to analyze the relationship between the distress of the family caregiver and the presence of neuropsychiatric symptoms in elderly patients with Alzheimer's disease or mixed dementia. Method: a descriptive, cross-sectional study conducted in the Geriatric and Dementias Clinic of a general tertiary hospital, with 96 elderly people with Alzheimer's disease or mixed dementia and their family caregivers. Questionnaires to characterize the elderly and caregivers, and the Neuropsychiatric Inventory were used. Descriptive statistics and Pearson correlation test were performed. Results: 68.7% of the elderly were women, average age 80.8 years, 56.2% had Alzheimer's disease and 43.7%, mixed dementia. Among caregivers, 90.6% were women, average age 56, 70.8% took care of parents and 64.6% lived with the elderly. There was a strong (r = 0.82) and significant (p <0.01) correlation between the total score on the Neuropsychiatric Inventory and the total score on the Neuropsychiatric Inventory-Distress and strong (r = 0.80) and significant (p <0 01) correlation between the total score on the Neuropsychiatric Inventory Distress and the number of neuropsychiatric symptoms, i.e., the higher the number, frequency and severity of these symptoms in the elderly, the more intense is the caregiver distress. Conclusion: the presence of neuropsychiatric symptoms in the elderly was related to increased distress in caregivers. PMID:27533264

  3. Aggression in Persons with Dementia: Use of Nursing Theory to Guide Clinical Practice

    PubMed Central

    Dettmore, Diane; Kolanowski, Ann; Boustani, Malaz

    2009-01-01

    With approximately four million people in the United States today diagnosed with dementia, one of the most devastating problems faced by caregivers and patients is dealing with aggressive behavior. Aggression occurs in half of persons diagnosed with dementia and is associated with more rapid cognitive decline, increased risk of abuse, and caregiver burden. This paper uses the Need-driven Dementia-compromised Behavior (NDB) model to explain aggression and discusses therapeutic approaches to care that combines non-pharmacological and pharmacological interventions targeting both the management of aggression crisis and preventing its future recurrence. A clinical algorithm guided by the NBD model is provided for practitioners. PMID:19215808

  4. Drug Therapy for Behavioral and Psychological Symptoms of Dementia

    PubMed Central

    Wang, Feng; Feng, Ting-Yi; Yang, Shilin; Preter, Maurice; Zhou, Jiang-Ning; Wang, Xiao-Ping

    2016-01-01

    Dementia, which can be induced by diverse factors, is a clinical syndrome characterized by the decline of cognitive function. Behavioral and psychological symptoms of dementia (BPSD) include depression, agitation, and aggression. Dementia causes a heavy burden on patients and their caregivers. Patients with BPSD should be assessed comprehensively by practitioners and offered appropriate non-pharmacologic and pharmacologic therapy. Non-pharmacologic therapy has been recommended as the basal treatment for BPSD; however, pharmacologic therapy is required under many situations. Medications, including antipsychotic agents, antidepressants, sedative and hypnotic agents, mood stabilizers, cholinesterase inhibitors, and amantadine, are extensively used in clinical practice. We have reviewed the progression of pharmacologic therapy for BPSD. PMID:26644152

  5. Dependency aspect of caregiver burden is uniquely related to cognitive impairment in Veterans.

    PubMed

    Stinson, Jennifer M; Collins, Robert L; Maestas, Kacey Little; Pacheco, Vitor; LeMaire, Ashley; Benge, Jared

    2014-01-01

    The psychosocial toll of caring for an individual with dementia is an important, if understudied, concept. For practitioners and researchers alike, understanding the relation between patient characteristics and different facets of caregiver burden is important for guiding treatment and prevention efforts. The current study analyzed the dimensions of caregiver burden and the relation between caregiver burden and results of neuropsychological testing. Participants included 243 dyads of caregivers and Veterans referred for neuropsychological evaluation. Caregivers completed the Zarit Burden Interview (ZBI) to assess caregiver burden. Patients completed a battery of neuropsychological tests measuring the domains of attention/processing speed, memory, language, and executive functioning. A principal components analysis of the ZBI revealed a three-factor structure: psychosocial burden, dependency burden, and guilt. Correlations with neuropsychological test performance by Veteran patients suggested that test performance in the memory, attention, processing speed, executive functioning, and emotional functioning domains were solely related to the caregiver dependency burden factor of the ZBI. Additional analyses suggested severity of dementia and number of tests in the impaired range further influenced reported caregiver burden. The current study is one of the few studies examining caregiver burden in relation to neuropsychological functioning in a mixed clinical sample and has important implications for clinical practice.

  6. Use and Adoption of an Assisted Cognition System to Support Therapies for People with Dementia

    PubMed Central

    Favela, Jesús

    2016-01-01

    The cognitive deficits in persons with dementia (PwD) can produce significant functional impairment from early stages. Although memory decline is most prominent, impairments in attention, orientation, language, reasoning, and executive functioning are also common. Dementia is also characterized by changes in personality and behavioral functioning that can be very challenging for caregivers and patients. This paper presents results on the use and adoption of an assisted cognition system to support occupational therapy to address psychological and behavioral symptoms of dementia. During 16 weeks, we conducted an in situ evaluation with two caregiver-PwD dyads to assess the adoption and effectiveness of the system to ameliorate challenging behaviors and reducing caregiver burden. Evaluation results indicate that intervention personalization and a touch-based interface encouraged the adoption of the system, helping reduce challenging behaviors in PwD and caregiver burden. PMID:27648106

  7. A technology roadmap of assistive technologies for dementia care in Japan.

    PubMed

    Sugihara, Taro; Fujinami, Tsutomu; Phaal, Robert; Ikawa, Yasuo

    2015-01-01

    The number of elderly people in Japan is growing, which raises the issue of dementia, as the probability of becoming cognitively impaired increases with age. There is an increasing need for caregivers, who are well-trained, experienced and can pay special attention to the needs of people with dementia. Technology can play an important role in helping such people and their caregivers. A lack of mutual understanding between caregivers and researchers regarding the appropriate uses of assistive technologies is another problem. A vision of person-centred care based on the use of information and communication technology to maintain residents' autonomy and continuity in their lives is presented. Based on this vision, a roadmap and a list of challenges to realizing assistive technologies have been developed. The roadmap facilitates mutual understanding between caregivers and researchers, resulting in appropriate technologies to enhance the quality of life of people with dementia.

  8. Use and Adoption of an Assisted Cognition System to Support Therapies for People with Dementia.

    PubMed

    Navarro, René F; Rodríguez, Marcela D; Favela, Jesús

    2016-01-01

    The cognitive deficits in persons with dementia (PwD) can produce significant functional impairment from early stages. Although memory decline is most prominent, impairments in attention, orientation, language, reasoning, and executive functioning are also common. Dementia is also characterized by changes in personality and behavioral functioning that can be very challenging for caregivers and patients. This paper presents results on the use and adoption of an assisted cognition system to support occupational therapy to address psychological and behavioral symptoms of dementia. During 16 weeks, we conducted an in situ evaluation with two caregiver-PwD dyads to assess the adoption and effectiveness of the system to ameliorate challenging behaviors and reducing caregiver burden. Evaluation results indicate that intervention personalization and a touch-based interface encouraged the adoption of the system, helping reduce challenging behaviors in PwD and caregiver burden.

  9. [Home care of demented and non-demented patients. II: Health and burden of caregivers].

    PubMed

    Grässel, E

    1998-02-01

    1911 informal caregivers from the Federal Republic of Germany who care for someone with a chronic, non-congenital condition rendering them in need of physical "hands-on" nursing completed a standardized questionnaire on their situation as caregivers. The questionnaire was pertinent in particular to their own somatic symptoms (Giessen Symptom List, GSL) as well as their subjective burden (Burden Scale for Family Caregivers, BSFC). Eight out of ten caregivers in Germany are women. The home care of a dementia patient or of a distant or non-related person is taken on significantly more frequently by female caregivers. Somatic symptoms covering the spectrum of exhaustion, aching limbs, and heart and stomach complaints are in greater evidence amongst caregivers of dementia patients than amongst those caring for elderly people with relatively unimpaired cognitive performance. In all, the average extent of the somatic symptoms lies significantly above the age and gender specific value for the general population. The increased subjective burden of caregivers caring for a dementia patient expresses itself particularly in more interpersonal conflicts and clashes of interest between the care given and other areas of activity.

  10. What to Ask: Dementia

    MedlinePlus

    ... What to Ask: Dementia Tools and Tips The memory loss and other changes seen in dementia can ... can ask your healthcare proffesional about dementia. Is memory loss a normal part of aging? If so, ...

  11. An Integrated Review of Interventions to Improve Psychological Outcomes In Caregivers of Patients with Heart Failure

    PubMed Central

    Evangelista, Lorraine S.; Strömberg, Anna; Dionne-Odom, J. Nicholas

    2016-01-01

    Purpose of the Review To examine interventions aimed at improving psychological outcomes (e.g., caregiver burden, quality of life, anxiety, depression, perceived control, stress mastery, caregiver confidence and preparedness, and caregiver mastery) in family caregivers of patients with heart failure (HF). Recent Findings Eight studies meeting the inclusion criteria were included in the review. The most common intervention involved psychoeducation facilitated by a nurse (6/8) and supplemented with a combination of follow-up face-to-face sessions (2/6), home visits (2/6), telephone calls (3/6), and telemonitoring (3/6). Two studies used a support group intervention of 4–6 sessions. Half of the interventions reported a significant effect on one or more primary outcomes, including caregiver burden (n=4), depressive symptoms (n=1), stress mastery (n=1), caregiver confidence and preparedness (n=1), and caregiver mastery (n=1). Summary Compared to dementia and cancer family caregiving, few interventions have been evaluated in caregivers of patients with HF. Of the existing interventions identified in this review, considerable variability was observed in aims, intervention content, delivery methods, duration, intensity, methodological rigor, outcomes, and effects. Given this current state of the science, direct comparison of HF caregiver interventions and recommendations for clinical practice are premature. Thus, research priority is strongly warranted for intervention development and testing to enhance HF caregiver support and education. PMID:26716392

  12. Empowering the dementia care workforce to manage behavioral symptoms of dementia: Development and training outcomes from the VOICE Dementia Care Program.

    PubMed

    Karlin, Bradley E; Young, David; Dash, Kim

    2016-07-25

    Nonpharmacological approaches for managing behavioral symptoms of dementia remain widely underutilized, due in part to near-universal training needs reported by dementia caregivers in recent research. This article examines the development, core components, and initial outcomes of an evidence-informed, competency-based training program in the prevention and management of behavioral symptoms of dementia among care managers and nurses within an aging services system. The Vital Outcomes Inspired by Caregiver Engagement (VOICE) Dementia Care Training Program was developed based on identification of state-of-the-art approaches to managing behaviors through expert review of the literature and structured needs assessment. Results reveal robust improvements in knowledge, attitudes, and self-efficacy among training participants, with largest effect sizes (d = 1.8) on domains of knowledge and self-efficacy to manage behaviors. Findings support the feasibility and effectiveness of training in improving the abilities and confidence of aging services providers in dementia care and, specifically, in the nonpharmacological management of dementia-related behaviors.

  13. Care pathways for dementia: current perspectives

    PubMed Central

    Samsi, Kritika; Manthorpe, Jill

    2014-01-01

    Uncertainty appears to typify the experience of living with dementia. With an uncertain illness trajectory and unpredictable levels of deterioration and stability in symptoms, people with a diagnosis of dementia may live with uncertainty and anxiety and find it hard to make plans or decisions for their future. People with memory problems and caregivers seeking a diagnosis of dementia may also potentially find themselves navigating a labyrinth-like maze of services, practitioners, assessments, and memory tests, with limited understanding of test scores and little information about what support is available. In this context of uncertainty, the apparent clarity and certainty of a “dementia care pathway” may be attractive. However, the term “dementia care pathway” has multiple and overlapping meanings, which can potentially give rise to further confusion if these are ill-defined or a false consensus is presumed. This review distinguishes four meanings: 1) a mechanism for the management and containment of uncertainty and confusion, useful for the professional as well as the person with dementia; 2) a manual for sequencing care activities; 3) a guide to consumers, indicating eligibility for care activities, or a guide to self-management for dementia dyads, indicating the appropriateness of care activities; and 4) a manual for “walking with” the person. Examples of these approaches are presented from UK dementia services with illustrations of existing care pathways and associated time points, specifically focusing on: 1) early symptom identification and first service encounters, 2) assessment process, 3) diagnostic disclosure, 4) postdiagnostic support, and 5) appropriate interventions. We review the evidence around these themes, as well as discuss service pathways and referral routes used by some services in England and internationally. We conclude that the attraction of the term “care pathway” is seductive, but caution is needed in taking shared

  14. Integrating medical humanities into a pharmaceutical care seminar on dementia.

    PubMed

    Zimmermann, Martina

    2013-02-12

    Objective. To design, integrate, and assess the effectiveness of a medical humanities teaching module that focuses on pharmaceutical care for dementia patients.Design. Visual and textual dementia narratives were presented using a combination of teacher and learner-centered approaches with the aim being to highlight patients' and caregivers' needs for empathy and counselling.Assessment. As gauged from pre- and post-experience questionnaires, students highly rated this approach to teaching medical humanities. In-class presentations demonstrated students' increased sensitivity to patient and caregiver needs, while objective learning outcomes demonstrated students' increased knowledge and awareness.Conclusions. Pharmacy students were open to and successfully learned from reading and discussing patient and caregiver narratives, which furthers the discussion on the value of integrating the medical humanities into the curricula of pharmacy and other health sciences.

  15. Quality of life in dementia: a study on proxy bias

    PubMed Central

    2013-01-01

    Background Measurement of health-related quality of life (HRQoL) in dementia is difficult. At some point people with dementia become unable to meaningfully assess their own HRQoL. At such a point in time researchers need to rely on other types of information such as observation or assessments from informal caregivers (proxies). However, caregiver assessments may be biased by several mechanisms. The current study explores whether caregivers project part of their own HRQoL in their assessments of patient HRQoL. Methods The participants in the current study were 175 pairs, consisting of community-dwelling persons with dementia and their caregivers. The EQ-5D, the EQ-VAS and the QoL-AD were administered to collect HRQoL measurements from patients and caregivers at baseline, 6 months and 12 months. Two linear mixed models were used to investigate factors that bias proxy ratings, one with the EQ-VAS as dependent variable, and one with the EQ-5D utility as dependent variable. The independent variables were caregiver age, caregiver sex and caregiver QoL-AD items. Results The linear mixed model with EQ-VAS as dependent variable indicated that 3 caregiver characteristics, namely caregiver age, money (caregiver’s financial situation) and valuation of life as a whole were significant predictors of the patient-by-proxy VAS scores. The linear mixed model with utility value as the dependent variable showed that caregiver age and valuation of the ability to do things for fun were significant predictors of the patient-by-proxy EQ-5D utility values. Conclusions The current study was a first step in identifying factors that bias patient-by-proxy HRQoL assessments. It was discovered that caregivers project part of their own HRQoL onto patients when assessing patient HRQoL. This implies that patient-by-proxy HRQoL values should be interpreted with caution and not be used as a direct substitute for patient self-assessment, even when patients are no longer able meaningfully assess

  16. Italian Frontotemporal Dementia Network (FTD Group-SINDEM): sharing clinical and diagnostic procedures in Frontotemporal Dementia in Italy.

    PubMed

    Borroni, B; Turrone, R; Galimberti, D; Nacmias, B; Alberici, A; Benussi, A; Caffarra, P; Caltagirone, C; Cappa, S F; Frisoni, G B; Ghidoni, R; Marra, C; Padovani, A; Rainero, I; Scarpini, E; Silani, V; Sorbi, S; Tagliavini, F; Tremolizzo, L; Bruni, A C

    2015-05-01

    In the prospect of improved disease management and future clinical trials in Frontotemporal Dementia, it is desirable to share common diagnostic procedures. To this aim, the Italian FTD Network, under the aegis of the Italian Neurological Society for Dementia, has been established. Currently, 85 Italian Centers involved in dementia care are part of the network. Each Center completed a questionnaire on the local clinical procedures, focused on (1) clinical assessment, (2) use of neuroimaging and genetics; (3) support for patients and caregivers; (4) an opinion about the prevalence of FTD. The analyses of the results documented a comprehensive clinical and instrumental approach to FTD patients and their caregivers in Italy, with about 1,000 newly diagnosed cases per year and 2,500 patients currently followed by the participating Centers. In analogy to other European FTD consortia, future aims will be devoted to collect data on epidemiology of FTD and its subtypes and to provide harmonization of procedures among Centers.

  17. Professional Carers' Experiences of Caring for Individuals with Intellectual Disability and Dementia: A Review of the Literature

    ERIC Educational Resources Information Center

    Cleary, Josephine; Doody, Owen

    2017-01-01

    The number of people with intellectual disability living into old age and developing dementia continues to increase. Dementia presents a wide range of challenges for staff due to progressive deterioration. This article presents the findings from a narrative literature review of professional caregivers' experiences of caring for individuals with…

  18. Psychotropic Medication Burden and Factors Associated with Antipsychotic Use: An Analysis of a Population-Based Sample of Community-Dwelling Older Persons with Dementia

    PubMed Central

    Rhee, YongJoo; Csernansky, John G.; Emanuel, Linda L.; Chang, Chang-Gok; Shega, Joseph W.

    2011-01-01

    Objectives To estimate the proportion of community dwelling older adults with dementia being prescribed a psychotropic and identify patient and caregiver factors associated with antipsychotics use. Methods Retrospective cohort study of The Aging, Demographics, and Memory Study (ADAMS) from 2002 to 2004 designed to assess dementia severity and service use among community-dwelling older adults. The frequency of psychotropic medication (antipsychotics, antidepressants, anticonvulsants and benzodiazepines) use was tabulated and weighted to the US population by dementia diagnosis. Logistic regression analysis identified factors associated with antipsychotic use. Results The 307 participants of ADAMS had the following dementia diagnosis: Alzheimer’s disease (69.29%), vascular dementia (17.74%) and other dementia (12.39%). The proportion of participants prescribed a psychotropic medication broken down by therapeutic class was as 19.07% antipsychotics, 29.08% antidepressants, 9.84% benzodiazepines, and 8.85% anticonvulsants. Older adults with dementia were significantly more likely to receive an antipsychotic if they had moderate dementia (OR =7.4, p<0.05), or severe dementia (OR=5.80, p<0.05), compared to mild dementia or were diagnosed with Alzheimer (OR =6.7, p<0.05) dementia compared to vascular dementia. Older adults with dementia who lived with their caregivers in were significantly less likely to be medicated with antipsychotics (OR= 0.19, p<0.05) compared to those who lived alone. Also, persons with dementia were significantly less likely to be prescribed an antipsychotic if the caregivers were clinically depressed (OR=0.03, p<0.05) compared to those who were not depressed. Conclusion We found psychotropic medication use is common among community-dwelling older adults with dementia. Caregivers appear to have a substantial impact on whether or not an antipsychotic is prescribed, which adds additional complexity to conversations discussing the risk-benefit ratio of

  19. Global music approach to persons with dementia: evidence and practice

    PubMed Central

    Raglio, Alfredo; Filippi, Stefania; Bellandi, Daniele; Stramba-Badiale, Marco

    2014-01-01

    Music is an important resource for achieving psychological, cognitive, and social goals in the field of dementia. This paper describes the different types of evidence-based music interventions that can be found in literature and proposes a structured intervention model (global music approach to persons with dementia, GMA-D). The literature concerning music and dementia was considered and analyzed. The reported studies included more recent studies and/or studies with relevant scientific characteristics. From this background, a global music approach was proposed using music and sound–music elements according to the needs, clinical characteristics, and therapeutic–rehabilitation goals that emerge in the care of persons with dementia. From the literature analysis the following evidence-based interventions emerged: active music therapy (psychological and rehabilitative approaches), active music therapy with family caregivers and persons with dementia, music-based interventions, caregivers singing, individualized listening to music, and background music. Characteristics of each type of intervention are described and discussed. Standardizing the operational methods and evaluation of the single activities and a joint practice can contribute to achieve the validation of the application model. The proposed model can be considered a low-cost nonpharmacological intervention and a therapeutic–rehabilitation method for the reduction of behavioral disturbances, for stimulation of cognitive functions, and for increasing the overall quality of life of persons with dementia. PMID:25336931

  20. Global music approach to persons with dementia: evidence and practice.

    PubMed

    Raglio, Alfredo; Filippi, Stefania; Bellandi, Daniele; Stramba-Badiale, Marco

    2014-01-01

    Music is an important resource for achieving psychological, cognitive, and social goals in the field of dementia. This paper describes the different types of evidence-based music interventions that can be found in literature and proposes a structured intervention model (global music approach to persons with dementia, GMA-D). The literature concerning music and dementia was considered and analyzed. The reported studies included more recent studies and/or studies with relevant scientific characteristics. From this background, a global music approach was proposed using music and sound-music elements according to the needs, clinical characteristics, and therapeutic-rehabilitation goals that emerge in the care of persons with dementia. From the literature analysis the following evidence-based interventions emerged: active music therapy (psychological and rehabilitative approaches), active music therapy with family caregivers and persons with dementia, music-based interventions, caregivers singing, individualized listening to music, and background music. Characteristics of each type of intervention are described and discussed. Standardizing the operational methods and evaluation of the single activities and a joint practice can contribute to achieve the validation of the application model. The proposed model can be considered a low-cost nonpharmacological intervention and a therapeutic-rehabilitation method for the reduction of behavioral disturbances, for stimulation of cognitive functions, and for increasing the overall quality of life of persons with dementia.

  1. Long Distance Caregiving

    MedlinePlus

    ... life, working women with their own major family responsibilities remain our primary caregivers, more and more men are becoming caregivers. However, anyone anywhere can give care—regardless of gender, income, age, social status, and employment. No matter how great the ...

  2. Symptoms at Onset in First Episode Schizophrenia: Caregivers Perspectives

    PubMed Central

    Tharoor, Hema; Ganesh, Aarthi

    2015-01-01

    Background: Early recognition of symptoms is important in the management of psychosis. Caregivers understanding and attribution of symptoms plays a major role in treatment selection. Aim: The aim was to identify the various symptoms cluster recognized by caregivers at illness onset in first episode schizophrenia. Subjects and Methods: In a cross-sectional study 40 key caregivers of patients with first episode of Schizophrenia (International Classification of Diseases-10) attending the outpatient services of Schizophrenia Research Foundation were recruited. Caregivers were assessed using a questionnaire adapted from the Psychiatric and Personal History Schedule. Statistical Analysis: Principal component (PCP) analysis. Results: Caregivers were predominantly women. Parents (58%), siblings (18%), spouse (12%), and children (12%) formed the sample. The caregiver easily recognized depressive symptoms. An analysis was done to analyze symptom data rated on the caregiver questionnaire indicated a four-factor solution. PCP analysis produced a clear depressive, anxious, irritable, and vegetative factor (Eigenvalue >0.05). Caregivers (40%) attributed present lifestyle as causality. The first contact of help in almost half of the sample (45%) was to a psychiatric facility. Conclusion: Caregiver's perception about mental illness and ability to identify the four factors has important treatment implications. Studying patterns of help seeking may be a useful strategy in early intervention programs. PMID:26702170

  3. The COACH prompting system to assist older adults with dementia through handwashing: An efficacy study

    PubMed Central

    Mihailidis, Alex; Boger, Jennifer N; Craig, Tammy; Hoey, Jesse

    2008-01-01

    Background Many older adults with dementia require constant assistance from a caregiver when completing activities of daily living (ADL). This study examines the efficacy of a computerized device intended to assist people with dementia through ADL, while reducing caregiver burden. The device, called COACH, uses artificial intelligence to autonomously guide an older adult with dementia through the ADL using audio and/or audio-video prompts. Methods Six older adults with moderate-to-severe dementia participated in this study. Handwashing was chosen as the target ADL. A single subject research design was used with two alternating baseline (COACH not used) and intervention (COACH used) phases. The data were analyzed to investigate the impact of COACH on the participants' independence and caregiver burden as well as COACH's overall performance for the activity of handwashing. Results Participants with moderate-level dementia were able to complete an average of 11% more handwashing steps independently and required 60% fewer interactions with a human caregiver when COACH was in use. Four of the participants achieved complete or very close to complete independence. Interestingly, participants' MMSE scores did not appear to robustly coincide with handwashing performance and/or responsiveness to COACH; other idiosyncrasies of each individual seem to play a stronger role. While the majority (78%) of COACH's actions were considered clinically correct, areas for improvement were identified. Conclusion The COACH system shows promise as a tool to help support older adults with moderate-levels of dementia and their caregivers. These findings reinforce the need for flexibility and dynamic personalization in devices designed to assist older adults with dementia. After addressing identified improvements, the authors plan to run clinical trials with a sample of community-dwelling older adults and caregivers. PMID:18992135

  4. Dementia and serious coexisting medical conditions: a double whammy.

    PubMed

    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.

  5. [Implications of Alzheimer's disease for the caregiver's quality of life: a comparative study].

    PubMed

    Inouye, Keika; Pedrazzani, Elisete Silva; Pavarini, Sofia Cristina Iost

    2010-05-01

    This study aimed to compare overall and dimension-specific perceptions of quality of life between a group of caregivers of elderly patients with Alzheimer's disease and a group of non-caregivers, matched for sociodemographic variables. Quality of life was measured with the Quality of Life Evaluation Scale in Alzheimer's Disease (Caregiver Version). Statistical analyses were performed (descriptive and ordinal logistic regression). Caregivers showed significantly higher odds of negatively evaluating the dimensions of physical health, disposition, mood, memory, you in general, and the capacity to perform leisure activities as compared to non-caregivers. Mean total quality of life score was 38.83 for caregivers and 41.81 for non-caregivers. The data suggest that contact with Alzheimer's disease negatively influences the total score and some dimensions of quality of life for family caregivers.

  6. Recalled attributes of parents with Alzheimer's disease: relevance for caregiving

    PubMed Central

    Chiriboga, David A.; Jang, Yuri; Molinari, Victor; Kim, Giyeon; Ko, Jung Eun

    2014-01-01

    Health psychology has long been involved in studies of factors that lead to more effective caregiving. Drawing on the theory of distributive justice, the underlying hypothesis of this paper was that perceptions of what a demented parent was like, prior to becoming ill, influence an adult child caregiver's provision of care, as well as the caregiver's own well-being. A secondary question dealt with the nature of retrospective ratings by caregiver informants. The sample consisted of triads of two adult children (N = 385) and a parent (N = 201) diagnosed with Alzheimer's disease, although in a few instances only one adult child was interviewed. Both retrospective and current ratings of the parent were made by caregivers, who were administered a semantic differential instrument twice over a 10-month period. Comparison of ratings from first and second interview waves suggested that perceptions of what a parent was like, prior to the onset of dementia, were more stable over time than perceptions of what the parent was currently like, at each interview. Ratings of premorbid attributes were more strongly related to ratings of the present for those parents who displayed the least evidence of cognitive decline. Regression analyses supported the hypothesized relationship between adult children's perceptions and both provision of care and well-being variables. Results have implications for projections of caregiver burden and for placement into long-term care. PMID:25750833

  7. Family Caregiving or Caregiving Alone: Who Helps the Helper?

    ERIC Educational Resources Information Center

    Sims-Gould, Joanie; Martin-Matthews, Anne

    2007-01-01

    This study advances the understanding of family caregiving by examining the relationship between adult children caregivers and their helpers. Specifically, it focuses on examining "who helps whom" and extends analyses beyond the dyadic focus of caregiving in later life. The focus on helping and caregiving addresses the variety of…

  8. Empowering Family Caregivers: The Powerful Tools for Caregiving Program

    ERIC Educational Resources Information Center

    Boise, Linda; Congleton, Leslie; Shannon, Kathy

    2005-01-01

    "Powerful Tools for Caregiving" is an education program for family caregivers of older adults. Based on a self-efficacy model, the program empowers family caregivers to reduce negative effects of caregiving and to practice self-care. Through a train-the-trainer approach, professional and community volunteers were trained as class leaders and…

  9. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients’ behavioral changes than physical disability: a comparative study

    PubMed Central

    2012-01-01

    Background Behavioral changes in patients with amyotrophic lateral sclerosis (ALS) mirror those found in frontotemporal dementia (FTD). Considering the high rate of neuropsychiatric symptoms found in ALS patients, this paper examines whether caregiver burden is associated with behavioral changes over and above the physical disability of patients with ALS, and if the presence of caregivers’ depression, anxiety and stress also impacts on caregiver burden. Methods 140 caregivers of patients with ALS participated in a postal survey investigating patients’ neuropsychiatric symptoms (Cambridge Behaviour Inventory Revised CBI-R), motor function (Amyotrophic Lateral Sclerosis Functional Rating Scale Revised - ALSFRS-R), caregiver burden (Zarit Burden Interview), and caregiver mood (Depression, Anxiety and Stress Scale- DASS21). Seventy four percent of them were caregivers of patients with limb onset and 25.7% were caregivers of patients with bulbar onset. Results Moderate to severe behavioral changes were reported in 10-40% of patients with ALS. The levels of depression, anxiety and stress in the caregivers reached 20%. Burden was high in 48% of the caregivers. The strongest predictor of high caregiver burden was ALS patients’ abnormal behavior rather than physical disability, with an odds ratio of 1.4, followed by caregivers’ stress. Conclusions Our study has identified that behavioral changes (e.g. disinhibition, impulsivity) and caregiver stress have greater impact on caregiver burden than level and pattern of physical disability. PMID:23216745

  10. Translating Training in the NYU Caregiver Intervention in Australia: Maintaining Fidelity and Meeting Graduate Standards in an Online Continuing Professional Education Setting

    ERIC Educational Resources Information Center

    Scott, Theresa L.; Mittelman, Mary S.; Beattie, Elizabeth; Parker, Deborah; Neville, Christine

    2015-01-01

    The aim of this study was to develop an Internet-based self-directed training program for Australian healthcare workers to facilitate learning and competence in delivery of a proven intervention for caregivers of people with dementia: The New York University Caregiver Intervention (NYUCI). The NYUCI is a nonpharmacological, multicomponent…

  11. Moving beyond caregiver burden: identifying helpful interventions for family caregivers.

    PubMed

    Sorrell, Jeanne M

    2014-03-01

    Family members serving as informal caregivers for loved ones often experience physical, psychological, emotional, social, and financial consequences that can be conceptualized as caregiver burden. As the number of older adults in our society continues to increase, there will be even more demand for family caregivers. It is important to move beyond a focus on the statistics and characteristics of caregiver burden and identify helpful interventions to reduce this burden. Interventions that decrease caregiver burden can enable family caregivers to delay placement of the individual in an institutional setting and improve quality of life for both the caregiver and care recipient.

  12. Validation of the Italian Version of the Caregiver Abuse Screen among Family Caregivers of Older People with Alzheimer's Disease

    PubMed Central

    Di Rosa, Mirko; Barbabella, Francesco; Barbini, Norma; Chiatti, Carlos

    2017-01-01

    Introduction. Elder abuse is often a hidden phenomenon and, in many cases, screening practices are difficult to implement among older people with dementia. The Caregiver Abuse Screen (CASE) is a useful tool which is administered to family caregivers for detecting their potential abusive behavior. Objectives. To validate the Italian version of the CASE tool in the context of family caregiving of older people with Alzheimer's disease (AD) and to identify risk factors for elder abuse in Italy. Methods. The CASE test was administered to 438 caregivers, recruited in the Up-Tech study. Validity and reliability were evaluated using Spearman's correlation coefficients, principal-component analysis, and Cronbach's alphas. The association between the CASE and other variables potentially associated with elder abuse was also analyzed. Results. The factor analysis suggested the presence of a single factor, with a strong internal consistency (Cronbach's alpha = 0.86). CASE score was strongly correlated with well-known risk factors of abuse. At multivariate level, main factors associated with CASE total score were caregiver burden and AD-related behavioral disturbances. Conclusions. The Italian version of the CASE is a reliable and consistent screening tool for tackling the risk of being or becoming perpetrators of abuse by family caregivers of people with AD. PMID:28265571

  13. Experiences of caregivers and relatives in public nursing homes.

    PubMed

    Häggström, Elisabeth; Kihlgren, Annica

    2007-09-01

    The aim of the present study was, by means of discussion highlighting ethical questions and moral reasonings, to increase understanding of the situations of caregivers and relatives of older persons living in a public nursing home in Sweden. The findings show that these circumstances can be better understood by considering two different perspectives: an individual perspective, which focuses on the direct contact that occurs among older people, caregivers and relatives; and a societal perspective, which focuses on the norms, values, rules and laws that govern a society. Relatives and caregivers thought that the politicians were sending out mixed messages: they were praising caregivers and relatives for their efforts, but at the same time the public health care sector was subjected to significant cutbacks in resources. Both caregivers and relatives were dissatisfied and frustrated with the present situation regarding the care of older persons in public nursing homes.

  14. A patient’s experience in dementia care

    PubMed Central

    Frank, Christopher; Forbes, Rev Faye

    2017-01-01

    Abstract Objective To give FPs an understanding of the “lived experience” of dementia via the words of a person with dementia (PWD)— Faye Forbes, a 64-year-old Anglican priest with Alzheimer disease who provides her perspectives on living with dementia—and to use these thoughts to improve care and outcomes. Sources of information Ovid MEDLINE was searched from January 2005 to February 2015 using subject headings for dementia, caregiver, perspectives, and quality of health care. Articles geared toward FPs were selected. Relevant review articles and original research articles were used when appropriate and if they were applicable to PWDs and their caregivers. Main message There are several frameworks that organize the main experiences described by patients and caregivers. We used a review of the qualitative literature to provide the framework to summarize Faye’s experience under the following headings: seeking a diagnosis, accessing supports and services, information needs, disease management, and communication and attitudes. Conclusion Physicians should consider these themes when developing a management plan for PWDs. Trying to understand the experiences and perspectives of PWDs and their caregivers is important in providing optimal care. PMID:28115436

  15. Wife Caregivers of Frail Elderly Veterans: Correlates of Caregiver Satisfaction and Caregiver Strain.

    ERIC Educational Resources Information Center

    Dorfman, Lorraine T.; And Others

    1996-01-01

    Investigated correlates of satisfaction and strain in 80 wife caregivers of frail elderly veterans. Support from spouse was the strongest positive predictor of satisfaction with caregiving and the strongest negative predictor of caregiver strain. Self efficacy was the strongest predictor of caregiver life satisfaction. (Author)

  16. The Caregiving Quandary
.

    PubMed

    Boyle, Deborah A

    2017-04-01

    Long before I became a cancer caregiver, I worried about families. Providing care without a script, expanding their workload, solo decision making, incessant worrying, managing expectations, overseeing medications-that is the lay caregiver's all-consuming world. However, when cancer entered my residence, I started living what I had historically observed from a distance. The double-duty caregiving at work and home overwhelmed me. Years of experience did little to prepare me for the emotional tsunami and physical toll caregiving took on me. I questioned my ability to make decisions, I got my husband's medications mixed up, and I had trouble asking for and accepting help, despite how much I needed it.
.

  17. Eldercare at Home: Caregiving

    MedlinePlus

    ... as a way of showing appreciation for the love and care they have received themselves. Caregiving can ... give. You might also forget that other people love and care about you and are willing to ...

  18. Caregivers and Serious Illness

    MedlinePlus

    ... or those we choose to call family. Caregiver Responsibilities When a family member has a serious illness , ... transportation; do housework; handle your loved one’s former responsibilities, such as child care; and provide help with ...

  19. Depression and Caregiving

    MedlinePlus

    ... FCA - A A + A You are here Home Depression and Caregiving Order this publication Printer-friendly version ... a more serious depression over time. Symptoms of Depression People experience depression in different ways. Some may ...

  20. Guide for Caregivers

    MedlinePlus

    ... Caregivers to the satisfaction they have in their personal and social relationships, and the amount of time ... reduced for carepartners who are able to develop personal and social support. Anger The situation feels — and ...

  1. Capgras syndrome in Dementia with Lewy Bodies

    PubMed Central

    Thaipisutikul, Papan; Lobach, Iryna; Zweig, Yael; Gurnani, Ashita; Galvin, James E.

    2014-01-01

    Background Capgras syndrome is characterized by the recurrent, transient belief that a person has been replaced by an identical imposter. We reviewed clinical characteristics of Dementia with Lewy Bodies (DLB) patients with Capgras syndrome compared to those without Capgras. Methods We identified 55 consecutive DLB patients (11 cases with Capgras syndrome (DLB-C) and 44 cases without evidence of Capgras (DLB). Semi-structured interviews with the patient and an informant, neurological exams, and neuropsychological testing were performed. Caregivers were assessed for caregiver burden and depression. Primary comparisons were made between DLB-C and DLB. Exploratory analyses using stepwise logistic regression and bootstrap analyses were performed to determine clinical features associated with Capgras. Results DLB-C patients experienced more visual hallucinations and self-reported anxiety, had higher scores on the Neuropsychiatric Inventory, and were less likely to be treated with cholinesterase inhibitors at time of initial evaluation. Extrapyramidal symptoms and depression were not associated with Capgras. Caregivers of DLB-C patients had higher caregiver burden. DLB-C was associated with self-reported anxiety (OR 10.9; 95% CI 2.6-47.6). In a bootstrap analysis, clinical findings that were predictors of Capgras included visual hallucinations (log(OR) 18.3; 95% CI 17.9-19.3) and anxiety (log(OR) 2.9; 95% CI (0.31-20.2). Conclusions Our study suggests that Capgras syndrome is common in DLB and usually occurs in the presence of anxiety and visual hallucinations, suggesting related etiopathogenesis. Early appreciation of Capgras syndrome may afford the opportunity to alleviate caregiver burden and improve patient and caregiver outcomes. PMID:23211760

  2. The Zarit Burden Interview in Portugal: Validity and recommendations in dementia and palliative care.

    PubMed

    Gonçalves-Pereira, Manuel; Zarit, Steven H

    2014-01-01

    The impact of dementia on informal or family caregivers became a public health issue. One well-established tool for the assessment of emotional, physical and social impact on caregivers is the Zarit Burden Interview. Worldwide, it is widely used in epidemiological studies, drug or psychosocial clinical trials, and health services research. The original focus on burden among dementia caregivers has spread to other clinical contexts, mostly in old age and palliative care. Given these diverse applications, issues around the validity and reliability of national translations are crucial to assure that all evidence gathered is indeed of high quality. Moreover, caution is needed on the use of cut-offs for categorizing levels of caregiver strain or of subscales derived from recurrent exploratory factor analyses in small-scale local studies. As with other translations of measures in the health field, researchers and clinicians in Portugal must be aware of how to address bias in using the Zarit Burden Interview and interpreting findings.

  3. 77 FR 50548 - Agency Information Collection: (PACT Clinical Innovation Study: Engaging Caregivers in the Care...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-08-21

    ... AFFAIRS Agency Information Collection: (PACT Clinical Innovation Study: Engaging Caregivers in the Care of... being requested for information needed to improve dementia care for patients and care givers. DATES... No. 2900--New (VA Form 10-0537). SUPPLEMENTARY INFORMATION: Title: PACT Clinical Innovation...

  4. Knowledge of Memory Aging in Students, Caregivers, and Senior Service Providers

    ERIC Educational Resources Information Center

    Cherry, Katie E.; Allen, Priscilla D.; Boudreaux, Emily O.; Robichaux, Mary L.; Hawley, Karri S.

    2009-01-01

    The Knowledge of Memory Aging Questionnaire (KMAQ) (Cherry, Brigman, Hawley, & Reese, 2003) measures laypersons' knowledge of normal memory changes in late life and pathological deficits due to nonnormative factors such as adult dementia. In this study, we examined memory knowledge in community college and university students, caregivers, and…

  5. Differences in caregivers' cognitive appraisal, coping strategies, and perceived influence on life by care recipients' sex and kinship with primary caregivers.

    PubMed

    Iwata, Noboru; Horiguchi, Kazuko

    2016-01-01

    Objectives This study was aimed at examining whether caregivers' cognitive appraisal, coping strategies, and perceived influence on life vary according to care recipients' sex and caregivers' kinship (e.g., spouse, son, daughter, or daughter-in-law).Methods We contacted 1,110 relatively large visiting nursing stations in 37 prefectures, 83 of which agreed to participate in the study. Station managers were requested to select up to 20 families with an elderly person to care for. A questionnaire that included measures for caregivers' cognitive appraisal, coping strategies toward family caregiving, and caregivers' perception, which measures the perceptions of negative and positive influences on family life through caregiving, was administered to the 1,278 families selected by the nursing stations. From this pool, 1,020 questionnaires (79.8%) were returned, completed anonymously by primary caregivers.Results Two-way analysis of variance was used to analyze the care recipients' sex and kinship with primary caregivers. The analysis revealed significant interactions regarding the level of care required and approximately half of the scales measuring cognitive appraisal, coping strategies, and perceived influence on life. The level of care required was higher for male care recipients than for female care recipients when recipients were cared for by their daughters. Husbands caring for wives and daughters-in-law caring for fathers-in-law were more likely to feel "restricted in their social life," have difficulty "keeping pace" with caregiving, and have "negative influence on life." Husbands caring for wives felt less "personal growth through caregiving" than wives caring for husbands. Daughters caring for fathers perceived a lower "positive acceptance of caregiving role" than those caring for mothers. Husbands caring for wives tended not to seek "informal support." Care recipients' sex had little influence on caregivers' cognitive appraisal, coping strategies, and

  6. Dementia: Diagnosis and Tests

    MedlinePlus

    ... our e-newsletter! Aging & Health A to Z Dementia Diagnosis & Tests If you or someone you care ... To determine whether an older adult might have dementia, a healthcare professional will: Ask about the person’s ...

  7. Recruitment of breast cancer survivors and their caregivers: implications for dyad research and practice.

    PubMed

    Bazzi, Angela Robertson; Clark, Melissa A; Winter, Michael; Tripodis, Yorghos; Boehmer, Ulrike

    2016-05-06

    Breast cancer survivors' informal caregivers experience adverse health outcomes and could benefit from interventions. Studies of caregivers' participation in research, to date, have assumed heterosexuality. The aim of this study is to identify factors associated with caregiver participation among survivors with diversity in sexual orientation. We recruited breast cancer survivors into a telephone survey and asked them to invite a caregiver. Logistic regression identified factors associated with caregivers' participation. Among 297 survivors, 12 (4 %) had no caregivers, 82 (28 %) refused to provide caregiver information, 203 (68 %) provided caregiver contact, and 167 (56 %) had caregivers participate. Caregiver participation was more likely among sexual minority than heterosexual survivors (aOR: 1.89; 95 % CI: 1.08, 3.32), dyads with higher cohesion, and among caregivers who were partners. Caregiver participation was less likely among survivors with lower education and higher comorbidity. Findings provide insight into recruitment of diverse dyads into cancer survivorship research that will ultimately inform intervention design.

  8. Diagnosis and treatment of dementia: 2. Diagnosis

    PubMed Central

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

    2008-01-01

    Background Dementia can now be accurately diagnosed through clinical evaluation, cognitive screening, basic laboratory evaluation and structural imaging. A large number of ancillary techniques are also available to aid in diagnosis, but their role in the armamentarium of family physicians remains controversial. In this article, we provide physicians with practical guidance on the diagnosis of dementia based on recommendations from the Third Canadian Consensus Conference on the Diagnosis and Treatment of Dementia, held in March 2006. Methods We developed evidence-based guidelines using systematic literature searches, with specific criteria for study selection and quality assessment, and a clear and transparent decision-making process. We selected studies published from January 1996 to December 2005 that pertained to key diagnostic issues in dementia. We graded the strength of evidence using the criteria of the Canadian Task Force on Preventive Health Care. Results Of the 1591 articles we identified on all aspects of dementia diagnosis, 1095 met our inclusion criteria; 620 were deemed to be of good or fair quality. From a synthesis of the evidence in these studies, we made 32 recommendations related to the diagnosis of dementia. There are clinical criteria for diagnosing most forms of dementia. A standard diagnostic evaluation can be performd by family physicians over multiple visits. It involves a clinical history (from patient and caregiver), a physical examination and brief cognitive testing. A list of core laboratory tests is recommended. Structural imaging with computed tomography or magnetic resonance imaging is recommended in selected cases to rule out treatable causes of dementia or to rule in cerebrovascular disease. There is insufficient evidence to recommend routine functional imaging, measurement of biomarkers or neuropsychologic testing. Interpretation The diagnosis of dementia remains clinically integrative based on history, physical examination and

  9. Descriptive analyses of caregiver reprimands.

    PubMed

    Sloman, Kimberly N; Vollmer, Timothy R; Cotnoir, Nicole M; Borrero, Carrie S W; Borrero, John C; Samaha, Andrew L; St Peter, Claire C

    2005-01-01

    We conducted descriptive observations of 5 individuals with developmental disabilities and severe problem behavior while they interacted with their caregivers in either simulated environments (an inpatient hospital facility) or in their homes. The focus of the study was on caregiver reprimands and child problem behavior. Thus, we compared the frequency of problem behavior that immediately preceded a caregiver reprimand to that immediately following a caregiver reprimand, and the results showed that the frequency of problem behavior decreased following a reprimand. It is possible that caregiver reprimands are negatively reinforced by the momentary attenuation of problem behavior, and the implications for long- and short-term effects on caregiver behavior are discussed.

  10. Prevalence and predictors of change in adult-child primary caregivers.

    PubMed

    Szinovacz, Maximiliane E; Davey, Adam

    2013-01-01

    Family caregiving research is increasingly contextual and dynamic, but few studies have examined prevalence and predictors of change in primary caregivers, those with the most frequent contact with healthcare professionals. We identified prevalence and predictors of 2-year change in primary adult-child caregivers. Data pooled from the 1992-2000 waves of the Health and Retirement Study (HRS) represent 1,068 parent-level care occasions and 3,616 child-level occasions. There is considerable 2-year stability in primary adult-child caregivers. Parents are more prone to experience a change in adult-child primary caregivers if they live by themselves and if they have more sons and daughters. As far as the adult children are concerned, daughters and children living closer to parents are more likely to remain primary caregivers. Results suggest that change in primary caregivers is more strongly associated with available alternatives and gender norms than burden and competing obligations.

  11. Perceived caregiver stress in Alzheimer's disease and mild cognitive impairment: A case control study

    PubMed Central

    Anand, Kuljeet Singh; Dhikav, Vikas; Sachdeva, Ankur; Mishra, Pinki

    2016-01-01

    Objectives: Cross sectional studies have reported a tremendous amount of stress in caregivers of patients with Alzheimer's disease (AD) and Mild Cognitive Impairment (MCI). The present study aimed at evaluating the perceived stress in caregivers of patients with AD and MCI compared to controls. Materials and Methods: Caregivers of patients diagnosed with Alzheimer's disease/Mild Cognitive Impairment were recruited at the Memory Clinic of Neurology Department of a Tertiary Care Hospital in Northern India. The controls included caregivers of patients with chronic medical and psychiatric disorders. Caregivers were interviewed using Perceived Stress Scale (PSS) and the patients were assessed using The Blessed Activity of Daily Living (ADL), Mini Mental State Examination (MMSE) and Clinical Dementia Rating scale. The perceived stress of caregivers was compared amongst both groups and correlated with the severity of illness and activities of daily living of the patients. Results: Caregivers of a total of 31 patients of AD/MCI (Males = 24, Females = 7), and 30 controls (Males = 18, Females = 12) were interviewed. PSS Score was 23.29 ± 7.17 in cases and 7.5 ± 3.12 in controls. ADL Score was 7.97±5.53 in cases and 0.00 in controls. There was a significant difference between the PSS and ADL scores between those with AD and controls (P < 0.0001). Caregivers of patients with MCI had lower PSS scores compared to AD caregivers but significantly higher scores compared to caregivers of other chronic disorders. Similarly, correlation between Perceived Stress and ADL was significant (P < 0.001). Conclusions: Present study shows that caregivers of patients with AD/MCI have a high perceived stress compared to caregivers of patients with other chronic illness. PMID:27011630

  12. Predictors of Institutionalization of Dementia Patients in Mild and Moderate Stages: A 4-Year Prospective Analysis

    PubMed Central

    Eska, Kathrin; Graessel, Elmar; Donath, Carolin; Schwarzkopf, Larissa; Lauterberg, Joerg; Holle, Rolf

    2013-01-01

    Background Institutionalization is the most important milestone in the care of dementia patients. This study was aimed at identifying relevant predictors of institutionalization in a broad empirical context and interpreting them on the basis of the predictor model proposed by Luppa et al. [Dement Geriatr Cogn Disord 2008;26:65-78]. Methods At the start of this study, 357 patients with mild to moderate dementia were examined by their general practitioners, and a telephone interview was conducted with their caregivers. Four years later, the outcomes ‘institutionalization’ and ‘death’ were determined from health insurance data. Forty-one variables were examined for their predictive influence by univariate and multivariate Cox regression. Results The risk of institutionalization increased significantly (p ≤ 0.05) with older ages of patients [hazard ratio (HR) = 1.05] and caregivers (HR = 1.03), a higher educational level of the caregiver (HR = 1.83), greater use of community health services (HR = 1.59), greater caregiver burden (HR = 1.02), and when the caregiver and patient lived apart (HR = 1.97). Conclusion The results show that there is a multifactorial influence on institutionalization of dementia patients by sociodemographic, health-related, and psychological aspects as well as the care situation, thus validating the predictor model by Luppa et al. [Dement Geriatr Cogn Disord 2008;26:65-78]. Caregiver burden was found to be the strongest predictor accessible to interventions. PMID:24348504

  13. Integrating Medical Humanities into a Pharmaceutical Care Seminar on Dementia

    PubMed Central

    2013-01-01

    Objective. To design, integrate, and assess the effectiveness of a medical humanities teaching module that focuses on pharmaceutical care for dementia patients. Design. Visual and textual dementia narratives were presented using a combination of teacher and learner-centered approaches with the aim being to highlight patients’ and caregivers’ needs for empathy and counselling. Assessment. As gauged from pre- and post-experience questionnaires, students highly rated this approach to teaching medical humanities. In-class presentations demonstrated students’ increased sensitivity to patient and caregiver needs, while objective learning outcomes demonstrated students’ increased knowledge and awareness. Conclusions. Pharmacy students were open to and successfully learned from reading and discussing patient and caregiver narratives, which furthers the discussion on the value of integrating the medical humanities into the curricula of pharmacy and other health sciences. PMID:23459365

  14. R. I. Caregivers. Caring: A Training Program for Family Caregivers.

    ERIC Educational Resources Information Center

    Rhode Island State Dept. of Elderly Affairs, Providence.

    This document presents a training manual to help caregivers who provide care to older family members and friends at home. The program, which offers a practical approach to caregiving and a realistic view of the aging process, is intended to clarify the problems confronting caregivers of older people, serve as a basic source manual for training…

  15. Family Caregiving. A Manual for Caregivers of Older Adults.

    ERIC Educational Resources Information Center

    Mehrotra, Chandra, Ed.; And Others

    This manual provides caregivers with practical knowledge and suggestions that could be of help to them in this important role. Chapter 1 gives an overview of the volume and tells how to use it. Chapter 2 identifies who caregivers are, what they do, and what changes have taken place in their lives since they became caregivers. Chapter 3 begins with…

  16. Evaluation of Anosognosia in Alzheimer's Disease Using the Symptoms of Early Dementia-11 Questionnaire (SED-11Q)

    PubMed Central

    Maki, Yohko; Yamaguchi, Tomoharu; Yamaguchi, Haruyasu

    2013-01-01

    Aims The objective is to propose a brief method to evaluate anosognosia in Alzheimer's disease (AD) using the Symptoms of Early Dementia-11 Questionnaire (SED-11Q), a short informant-based screening questionnaire for identifying dementia. Methods The participants were 107 elderly individuals: 13 with a Clinical Dementia Rating (CDR) of 0.5, 73 with mild AD of CDR 1, and 21 with moderate AD of CDR 2. The patients and caregivers answered the SED-11Q independently, and the degree of discrepancy indicated the severity of anosognosia. Results The scores were as follows: caregiver scores were 2.46 ± 1.85 (mean ± SD) in CDR 0.5, 6.36 ± 3.02 in CDR 1, and 9.00 ± 1.14 in CDR 2; patient scores were 2.00 ± 1.78, 2.55 ± 2.33, and 1.33 ± 2.46, respectively. Discrepancy was 0.46 ± 1.61, 3.81 ± 3.95, and 7.67 ± 2.87, respectively, and the caregiver assessments were significantly higher than the patient assessments in CDR 1 and CDR 2 (p < 0.001 in both groups). The SED-11Q for anosognosia was validated with the standardized Anosognosia Questionnaire for Dementia (AD-Q). The caregiver scores were moderately correlated with behavioral and psychological symptoms of dementia scores (r = 0.524), and the patient scores were moderately correlated with depression scores (r = 0.561). Conclusion The SED-11Q serves a dual purpose: caregiver assessment is useful for the screening of dementia, and any discrepancy between the patient and the caregiver assessment is considered as an indication of the severity of anosognosia; this can be informative for caregivers and essential for successful care. PMID:24403907

  17. Diabetes mellitus and dementia.

    PubMed

    Ninomiya, Toshiharu

    2014-01-01

    Growing epidemiologic evidence has suggested that people with diabetes mellitus are at an increased risk for the development of dementia. However, the results for the subtypes of dementia are inconsistent. This review examines the risk of dementia in people with diabetes mellitus, and discusses the possible mechanism underpinning this association. Diabetes mellitus is associated with a 1.5- to 2.5-fold greater risk of dementia among community-dwelling elderly people. Notably, diabetes mellitus is a significant risk factor for not only vascular dementia, but also Alzheimer's disease. The mechanisms underpinning the association are unclear, but it may be multifactorial in nature, involving factors such as cardiovascular risk factors, glucose toxicity, changes in insulin metabolism and inflammation. The optimal management of these risk factors in early life may be important to prevent late-life dementia. Furthermore, novel therapeutic strategies will be needed to prevent or reduce the development of dementia in people with diabetes mellitus.

  18. Stress Relief for the Caregiver

    MedlinePlus

    ... you can take a break from your caregiving responsibilities to enjoy time alone or with friends. Visit ... respite, by allowing another individual to assume caregiving responsibilities for a limited period of time. It gives ...

  19. For Caregivers: Coping with Burnout

    MedlinePlus

    ... roles in our lives, such as wife/husband, mother/father, caregiver, and breadwinner. It is easy to ... From One Caregiver to Another Respite Care Resources Military Veterans Stories of Courage Newly Diagnosed We’re ...

  20. Caregiving for Frail Elders in Rural America.

    ERIC Educational Resources Information Center

    Bane, Share DeCroix

    This handbook attempts to answer questions about informal caregiving and caregivers, focusing on the rural elderly. The first section presents a national perspective on caregiving. Recipients of caregiving, providers of caregiving, the caregiving dilemma, and psychological, physical, family, and financial issues are discussed. The second section…

  1. Enhancing Resourcefulness to Improve Outcomes in Family Caregivers and Persons with Alzheimer's Disease: A Pilot Randomized Trial

    PubMed Central

    Gonzalez, Elizabeth W.; Polansky, Marcia; Lippa, Carol F.; Gitlin, Laura N.; Zauszniewski, Jaclene A.

    2014-01-01

    This pilot randomized trial tested an intervention aimed at enhancing resourcefulness in family caregivers of persons with dementia, postulating that caregivers' emotional outcomes (anxiety and depression) and role outcomes (reward, strain, mutuality, and preparedness) would be improved, and problem behaviors in the care recipients (persons with dementia) would be reduced as a result of the intervention. Subjects were stratified by race (white or African American) and by baseline resourcefulness (high or low). Family caregivers were randomly assigned to an intervention group in which subjects attended six resourcefulness training sessions, meeting for 2 hours weekly over 6 weeks, or to a control group that received no treatment. Small to medium effects were shown for the intervention program on resourcefulness, anxiety, and preparedness of the caregivers and on frequency of behavior problems in the care recipients. Caregivers in the intervention group reported significantly more resourcefulness skills, with a medium effect at week 6 and a small effect 12 weeks later, compared with the control group. Persons with dementia had fewer behavior problems in the intervention group compared with control, although the difference was not significant. Caregivers' anxiety was reduced in the intervention group at 12 weeks. PMID:25328754

  2. Caregiving: A Qualitative Concept Analysis

    ERIC Educational Resources Information Center

    Hermanns, Melinda; Mastel-Smith, Beth

    2012-01-01

    A common definition of caregiving does not exist. In an attempt to define the concept of caregiving, the authors used a hybrid qualitative model of concept development to analyze caregiving. The model consists of three phases: (a) theoretical, (b) fieldwork, and (c) analytical. The theoretical phase involves conducting an interdisciplinary…

  3. Predictors of Child Caregiver Commitment.

    ERIC Educational Resources Information Center

    Webb, Nancy Carnahan; Lowther, Malcolm

    This study examined the relationship between child caregiver commitment and the caregiver's personal characteristics and work experience, the characteristics of the job, and the quality of the child care center. Questionnaires that included several measurement instruments were sent to 381 full-time child caregivers in 94 centers. Caregiver…

  4. A new simple score (ABS) for assessing behavioral and psychological symptoms of dementia.

    PubMed

    Abe, K; Yamashita, T; Hishikawa, N; Ohta, Y; Deguchi, K; Sato, K; Matsuzono, K; Nakano, Y; Ikeda, Y; Wakutani, Y; Takao, Y

    2015-03-15

    In addition to cognitive impairment, behavioral and psychological symptoms of dementia (BPSD) are another important aspect of most dementia patients. This study was designed for a new simple assessment of BPSD. We first employed a clinical survey for the local community with sending an inquiry letter to all members (n=129) of dementia caregiver society, and then attempted to create a new BPSD score for dementia with 10 BPSD items. This new simple BPSD score was compared to a standard-detailed BPSD score neuropsychiatric inventory (NPI) for a possible correlation (n=792) and a time to complete (n=136). Inter-rater reliability was examined comparing scores between main and second caregivers (n=70) for AD. Based on the clinical survey for local caregivers, a new BPSD score for dementia (ABS, Abe's BPSD score) was newly created, in which each BPSD item was allotted by an already-weighted score (maximum 1-9) based on the frequency and severity, and was finalized with taking temporal occurrences into account. ABS was filled by the main caregiver with a full score of 44, was well correlated with NPI (r=0.716, **p<0.01) in 792 AD patients (age 78.6 ± 7.0 years, MMSE 19.0 ± 5.9), and took a shorter time as only 56.8 ± 38.8s (**p<0.01) than NPI score (132.7 ± 94.0 s) with 136 AD patients. A high inter-rater reliability was obtained (r=0.964, **p<0.01) with a little smaller score (0.877 time) of ABS in secondary than the main caregivers. ABS provides a new simple and quick test for BPSD assessment, with a good correlation to NPI but a shorter time, and with a high inter-rater reliability. Thus ABS is useful for evaluating BPSD for mild to moderate dementia patients.

  5. Asian Pacific Islander dementia care network: a model of care for underserved communities.

    PubMed

    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.

  6. Behavioral and Psychological Symptoms of Dementia

    PubMed Central

    Cerejeira, J.; Lagarto, L.; Mukaetova-Ladinska, E. B.

    2012-01-01

    Behavioral and psychological symptoms of dementia (BPSD), also known as neuropsychiatric symptoms, represent a heterogeneous group of non-cognitive symptoms and behaviors occurring in subjects with dementia. BPSD constitute a major component of the dementia syndrome irrespective of its subtype. They are as clinically relevant as cognitive symptoms as they strongly correlate with the degree of functional and cognitive impairment. BPSD include agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, disinhibition, delusions, hallucinations, and sleep or appetite changes. It is estimated that BPSD affect up to 90% of all dementia subjects over the course of their illness, and is independently associated with poor outcomes, including distress among patients and caregivers, long-term hospitalization, misuse of medication, and increased health care costs. Although these symptoms can be present individually it is more common that various psychopathological features co-occur simultaneously in the same patient. Thus, categorization of BPSD in clusters taking into account their natural course, prognosis, and treatment response may be useful in the clinical practice. The pathogenesis of BPSD has not been clearly delineated but it is probably the result of a complex interplay of psychological, social, and biological factors. Recent studies have emphasized the role of neurochemical, neuropathological, and genetic factors underlying the clinical manifestations of BPSD. A high degree of clinical expertise is crucial to appropriately recognize and manage the neuropsychiatric symptoms in a patient with dementia. Combination of non-pharmacological and careful use of pharmacological interventions is the recommended therapeutic for managing BPSD. Given the modest efficacy of current strategies, there is an urgent need to identify novel pharmacological targets and develop new non-pharmacological approaches to improve the adverse outcomes associated with

  7. Music and dementia.

    PubMed

    Baird, Amee; Samson, Séverine

    2015-01-01

    There is an increasing incidence of dementia in our aging population, and consequently an urgent need to develop treatments and activities that may alleviate the symptoms of dementia. Accumulating evidence shows that persons with dementia enjoy music, and their ability to respond to music is potentially preserved even in the late or severe stages of dementia when verbal communication may have ceased. Media interest in this topic has contributed to the public perception that music abilities are an "island of preservation" in an otherwise cognitively impaired person with dementia. In this chapter, we review the current literature on music cognition in dementia and show that there has been very scarce rigorous scientific investigation of this issue, and that various types of music memory exist and are differentially impaired in the different types of dementia. Furthermore, we discuss the recent development of music activities as a nonpharmacological treatment for dementia and highlight the methodological limitations of the current literature on this topic. While it has been reported that music activities can improve behavior, (particularly agitation), mood, and cognition in persons with dementia, recent large-scale randomized control studies have questioned the specificity of the effect of music and found that it is no more beneficial than other pleasant activities. Nevertheless, music is unique in its powerful ability to elicit both memories and emotions. This can provide an important link to individual's past and a means of nonverbal communication with carers, which make it an ideal stimulus for persons with dementia.

  8. Kinship Care and Nonrelative Family Foster Care: A Comparison of Caregiver Attributes and Attitudes.

    ERIC Educational Resources Information Center

    Gebel, Timothy J.

    1996-01-01

    Reports the findings of a survey that explored the attitudes and attributes of nonrelative family foster caregivers and kinship caregivers for children adjudicated dependent and placed by a state public welfare agency. Found significant differences on several demographic variables, in the frequency of caseworker contacts and in perceptions and…

  9. The cancer caregiving experience of caregivers of Mexican ancestry.

    PubMed

    Juarez, Gloria; Branin, Joan J; Rosales, Monica

    2014-01-01

    The act of providing care may be the same in all ethnic groups, but the way caregiving is defined by family members is influenced by cultural values and beliefs. This study describes the caregiving experience and challenges of caregivers of Mexican ancestry. Qualitative interviews of 20 family caregivers and thematic analysis of transcribed audiotapes identified four themes that characterized their caregiving experience. These themes include an emphasis on family values, a strong commitment to care, difficulties dealing with everyday life realities, and a reliance on spirituality, all of which added to the meaningfulness and burden of caregiving. Further investigation within a cultural context is warranted in the development of interventions and programs to better assist caregivers in coping with the challenges of providing cancer care.

  10. Diagnosis and management of dementia in primary care

    PubMed Central

    Parmar, Jasneet; Dobbs, Bonnie; McKay, Rhianne; Kirwan, Catherine; Cooper, Tim; Marin, Alexandra; Gupta, Nancy

    2014-01-01

    Abstract Objective To assess the current identification and management of patients with dementia in a primary care setting; to determine the accuracy of identification of dementia by primary care physicians; to examine reasons (triggers) for referral of patients with suspected dementia to the geriatric assessment team (GAT) from the primary care setting; and to compare indices of identification and management of dementia between the GAT and primary care network (PCN) physicians and between the GAT and community care (CC). Design Retrospective chart review and comparisons, based on quality indicators of dementia care as specified in the Third Canadian Consensus Conference on the Diagnosis and Treatment of Dementia, were conducted from matching charts obtained from 3 groups of health care providers. Setting Semirural region in the province of Alberta involving a PCN, CC, and a GAT. Participants One hundred patients who had been assessed by the GAT randomly selected from among those diagnosed with dementia or mild cognitive impairment by the GAT. Main outcome measures Diagnosis of dementia and indications of high-quality dementia care listed in PCN, CC, and GAT charts. Results Only 59% of the patients diagnosed with dementia by the GAT had a documented diagnosis of dementia in their PCN charts. None of the 12 patients diagnosed with mild cognitive impairment by the GAT had been diagnosed by the PCN. Memory decline was the most common reason for referral to the GAT. There were statistically significant differences between the PCN and the GAT on all quality indicators of dementia, with underuse of diagnostic and functional assessment tools and lack of attention to wandering, driving, medicolegal, and caregiver issues, and underuse of community supports in the PCN. There was higher congruence between CC and the GAT on assessment and care indices. Conclusion Dementia care remains a challenge in primary care. Within our primary care setting, there are opportunities for

  11. Green Care Farms: An Innovative Type of Adult Day Service to Stimulate Social Participation of People With Dementia.

    PubMed

    de Bruin, Simone R; Stoop, Annerieke; Molema, Claudia C M; Vaandrager, Lenneke; Hop, Peter J W M; Baan, Caroline A

    2015-01-01

    Objective: To explore the value of day services at green care farms (GCFs) in terms of social participation for people with dementia. Method: Semi-structured interviews were conducted with people with dementia who attended day services at a GCF (GCF group, n = 21), were on a waiting list (WL) for day services at a GCF (WL group, n = 12), or attended day services in a regular day care facility (RDCF group, n = 17) and with their family caregivers. Results: People with dementia in the GCF and WL group were primarily males, with an average age of 71 and 76 years, respectively, who almost all had a spousal caregiver. People with dementia in the RDCF group were mostly females with an average age of 85 years, most of whom had a non-spousal caregiver. For both the GCF and RDCF groups, it was indicated that day services made people with dementia feel part of society. The most important domains of social participation addressed by RDCFs were social interactions and recreational activities. GCFs additionally addressed the domains "paid employment" and "volunteer work." Conclusion: GCFs are valuable in terms of social participation for a particular group of people with dementia. Matching characteristics of adult day services (ADS) centers to the preferences and capacities of people with dementia is of importance. Diversity in ADS centers is therefore desirable.

  12. Caregiver Action Network

    MedlinePlus

    ... back from Iraq, he depends on me.” “My wife has been diagnosed with MS.” We CAN help ... and I’m his primary caregiver.” “Since my wife’s stroke, I handle everything.” “It’s been 10 years ...

  13. MDA ALS Caregiver's Guide

    MedlinePlus

    ... caregiving is to get support through respite care. Call on your network of paid or volunteer helpers to stay with your loved one so you can get a hair cut, go to a ball game, shop, enjoy a hobby, or just sit in the park and watch birds. Ask for babysitting or for someone to take ...

  14. Caring for the caregiver.

    PubMed

    Levy, Mitchell M

    2004-07-01

    There are certainly many coping behaviors that may assist ICU caregivers in the process of caring for themselves. Staff support groups,regular interdisciplinary meetings to discuss difficult cases,and bringing trained personnel into the intensive care unit (ICU)environment to offer staff training in communication and conflict resolution skills have been suggested as methods for alleviating caregiver stress. Combining these as well as other tools with a deeper look at the caregiver-patient relationship are important building blocks for creating a sane, healthy environment in the ICU. Over the next years, as the population ages, and as technologic advances continue, the critical care units will play an even more prominent role in health care. Given the threat posed by the severe nursing shortage, it becomes apparent that, to prepare for this increased need for critical care services, efforts must be directed to identify the sources of distress for ICU caregivers and develop focused training programs that alleviate the inevitably strains and pressures that arise in the process of compassionate caring for the critically ill.

  15. Quality improvement in neurology: dementia management quality measures.

    PubMed

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

    2014-03-01

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

  16. Dementia as a Disability and Human Rights Issue.

    PubMed

    Rushford, Nancy; Harvey, David

    In their article "Toward a Community-Based Dementia Care Strategy: How Do We Get There from Here?" Morton-Chang et al. draw attention to the urgent need for a community-based dementia care strategy in Canada. Drawing from national and international experience, including an illustrative case study of policy in Ontario, they identify three key strategic pillars to guide strategic action: 1. Engage persons living with dementia (PLWD) to any extent possible in decisions around their own care. 2. Acknowledge and support informal caregivers in their pivotal roles supporting PLWD and consequently the formal care. 3. Enable "ground-up" change through policies and funding mechanisms designed to ensure early intervention across a continuum of care. In this paper, we aim to broaden the lens for dementia and strategic action by framing dementia in terms of disability and human rights. We contend that a human rights approach is critical to addressing the vulnerability of people with dementia and caregivers and achieving the principal goals of dementia care, as they are largely represented in the strategic pillars proposed. These pillars direct action towards key areas of change within the existing health system but may not in and of themselves create the transformative change needed across systems and levels. Through the lens of disability and human rights, we reflect upon the complexity of dementia and move from the individual to the social sphere - shifting the focus from "care" that is oriented to "maintenance" in the community, towards "enablement," "empowerment" and social change, as it involves the reconceptualization of dementia that has begun to take shape at local, national and international levels. This brings us to the central argument of this paper, that dementia is as much a human rights issue and a social problem as it is a health issue, necessitating widespread social/systems change and strategic action that "challenges and changes the defining beliefs of a

  17. Disease-modifying therapeutic directions for Lewy-Body dementias

    PubMed Central

    Zhang, Qiang; Kim, Young-Cho; Narayanan, Nandakumar S.

    2015-01-01

    Dementia with Lewy bodies (DLB) is the second leading cause of dementia following Alzheimer's disease (AD) and accounts for up to 25% of all dementia. DLB is distinct from AD in that it involves extensive neuropsychiatric symptoms as well as motor symptoms, leads to enormous societal costs in terms of direct medical care and is associated with high financial and caregiver costs. Although, there are no disease-modifying therapies for DLB, we review several new therapeutic directions in treating DLB. We discuss progress in strategies to decrease the level of alpha-synuclein, to prevent the cell to cell transmission of misfolded alpha-synuclein, and the potential of brain stimulation in DLB. PMID:26347604

  18. Development of the Knowledge of Dementia Competencies Self-Assessment Tool.

    PubMed

    Curyto, Kimberly J; Vriesman, Deedre K

    2016-02-01

    Competent dementia care requires caregivers with specialized knowledge and skills. The Knowledge of Dementia Competencies Self-Assessment Tool was developed to help direct care workers (DCWs) assess their knowledge of 7 dementia competencies identified by the Michigan Dementia Coalition. Item selection was guided by literature review and expert panel consultation. It was given to 159 DCWs and readministered to 57 DCWs in a range of long-term care settings and revised based on qualitative feedback and statistical item analyses, resulting in 82 items demonstrating good internal consistency and test-retest reliability. Performance on items assessing competencies rated as most important was significantly related to training in these competencies. The DCWs in day care obtained higher scores than those in home care settings, and their sites reported a greater number of hours of dementia training. Validation in a more diverse group of DCWs and assessing its relationship to other measures of knowledge and skill is needed.

  19. [What you can do when dealing with emergencies in the dementia setting].

    PubMed

    Balmer, Hannes

    2015-01-01

    Frequent emergencies in patients with dementia include aggressiveness, screaming, day/night reversal, other behavioral disorders, and falls. They are often caused by delirium, especially if there has been a rapid change in the patient's state of health. Hypoactive delirium in particular is difficult to recognize in the dementia setting. Acute somatic diseases bear a different meaning in dementia than in non-dementia patients, and priorities must be given to the impaired cerebral performance. In addition to medical decisions, ethical ones need to be made. Special attention should be paid to the resources of the caregiver network. This article describes both non-pharmacological and pharmacological treatment modalities when dealing with emergencies in dementia patients.

  20. Brain Connectivity Alterations Are Associated with the Development of Dementia in Parkinson's Disease.

    PubMed

    Bertrand, Josie-Anne; McIntosh, Anthony R; Postuma, Ronald B; Kovacevic, Natasha; Latreille, Véronique; Panisset, Michel; Chouinard, Sylvain; Gagnon, Jean-François

    2016-04-01

    Dementia affects a high proportion of Parkinson's disease (PD) patients and poses a burden on caregivers and healthcare services. Electroencephalography (EEG) is a common nonevasive and nonexpensive technique that can easily be used in clinical settings to identify brain functional abnormalities. Only few studies had identified EEG abnormalities that can predict PD patients at higher risk for dementia. Brain connectivity EEG measures, such as multiscale entropy (MSE) and phase-locking value (PLV) analyses, may be more informative and sensitive to brain alterations leading to dementia than previously used methods. This study followed 62 dementia-free PD patients for a mean of 3.4 years to identify cerebral alterations that are associated with dementia. Baseline resting state EEG of patients who developed dementia (N = 18) was compared to those of patients who remained dementia-free (N = 44) and of 37 healthy subjects. MSE and PLV analyses were performed. Partial least squares statistical analysis revealed group differences associated with the development of dementia. Patients who developed dementia showed higher signal complexity and lower PLVs in low frequencies (mainly in delta frequency) than patients who remained dementia-free and controls. Conversely, both patient groups showed lower signal variability and higher PLVs in high frequencies (mainly in gamma frequency) compared to controls, with the strongest effect in patients who developed dementia. These findings suggest that specific disruptions of brain communication can be measured before PD patients develop dementia, providing a new potential marker to identify patients at highest risk of developing dementia and who are the best candidates for neuroprotective trials.

  1. Mental Health Correlates of Aggression in Nursing Home Residents with Dementia

    ERIC Educational Resources Information Center

    Talerico, Karen Amann; Evans, Lois K.; Strumpf, Neville E.

    2002-01-01

    Purpose: Aggression continues to challenge caregivers of persons with dementia, and identification of foci for effective interventions is needed. The purpose of this study was to examine the influence of (a) the resident characteristics of depression, communication, and cognition and (b) behavior management strategies on aggression in a group of…

  2. Beliefs about Promoting Cognitive Health among Filipino Americans Who Care for Persons with Dementia

    ERIC Educational Resources Information Center

    Laditka, Sarah B.; Tseng, Winston; Price, Anna E.; Ivey, Susan L.; Friedman, Daniela B.; Liu, Rui; Wu, Bei; Logsdon, Rebecca G.; Beard, Renee L.

    2012-01-01

    We examined beliefs about promoting cognitive health among Filipino Americans who care for persons with dementia, their awareness of media information about cognitive health, and their suggestions for communicating such information to other caregivers. We conducted three focus groups (25 participants). The constant comparison method compared…

  3. [Alzheimer's disease and caregivers experience in home care].

    PubMed

    Daga, Eleonora; Corvo, Elisabetta; Marucci, Anna Rita; Sansoni, Julita

    2014-01-01

    The aim of this study is to investigate the experience of primary caregivers (men and women) of Alzheimer Disease dementia, in order to tailor program and project to avoid care giving burden. A qualitative phenomenological method was used and the sample was defined by data saturation. Interviews were carried out and recorded in a day care Centre, transcribed verbatim. The analysis was conducted coding common themes and phrases. Six main themes emerged. Our results are similar to those existing in literature, showing care givers as individual in great danger physically and mentally. In the light of the study it is possible to tailor a nursing model in order to improve quality of life and decrease the burden of caregivers, this model should be implemented and analyzed.

  4. Assessment of attachment behaviour to human caregivers in wolf pups (Canis lupus lupus).

    PubMed

    Hall, Nathaniel J; Lord, Kathryn; Arnold, Anne-Marie K; Wynne, Clive D L; Udell, Monique A R

    2015-01-01

    Previous research suggested that 16-week old dog pups, but not wolf pups, show attachment behaviour to a human caregiver. Attachment to a caregiver in dog pups has been demonstrated by differential responding to a caregiver compared to a stranger in the Ainsworth Strange Situation Test. We show here that 3-7 week old wolf pups also show attachment-like behaviour to a human caregiver as measured by preferential proximity seeking, preferential contact, and preferential greeting to a human caregiver over a human stranger in a modified and counterbalanced version of the Ainsworth Strange Situation Test. In addition, our results show that preferential responding to a caregiver over a stranger is only apparent following brief isolation. In initial episodes, wolf pups show no differentiation between the caregiver and the stranger; however, following a 2-min separation, the pups show proximity seeking, more contact, and more greeting to the caregiver than the stranger. These results suggest intensive human socialization of a wolf can lead to attachment--like responding to a human caregiver during the first two months of a wolf pup's life.

  5. Inappropriate behaviors and hypersexuality in individuals with dementia: An overview of a neglected issue.

    PubMed

    Torrisi, Michele; Cacciola, Alberto; Marra, Angela; De Luca, Rosaria; Bramanti, Placido; Calabrò, Rocco Salvatore

    2016-08-04

    Behavioral and psychological symptoms of dementia are very common in patients affected by dementia, and are associated with high rates of institutionalization. Behavioral and psychological symptoms of dementia consist of aggressive behavior, delusions, hallucinations, depression, apathy, wandering, stereotyped and inappropriate sexual behavior. Interestingly, the latter has been reported to be relatively uncommon, but causing immense distress to patients and their caregivers. The genesis of inappropriate behavior is considered a combination of neurological, psychological and social factors. Although assessment is mainly carried out by clinical observation and interviews with caregivers, the most appropriate management of behavioral and psychological symptoms of dementia, including hypersexuality, is a combination of pharmacological and non-pharmacological interventions, according to specific symptoms, degree of cognitive dysfunction and subtype of dementia. The present narrative review will mainly focus on aggressiveness, disinhibition, aberrant motor, and sexually inappropriate behavior diagnostic work-up and treatment, in an attempt to provide both the patients and their caregivers with useful information to better manage these symptoms and improve their quality of life. Space is particularly dedicated to inappropriate sexual behavior, which is still considered a neglected issue. Geriatr Gerontol Int 2016; ••: ••-••.

  6. Caring for elderly people at home: the consequences to caregivers

    PubMed Central

    Grunfeld, E; Glossop, R; McDowell, I; Danbrook, C

    1997-01-01

    The emphasis on home-based care is one important aspect of health services restructuring initiatives in Canada. Fundamental to the preference for home-based care over institutional care is the expectation that family caregivers will be available in the home to support patients who would otherwise be in an institution. The authors explore the potential impact of this devolution of services from institutions to the home in 2 vulnerable patient populations--elderly patients with dementia and elderly patients with terminal illnesses. Community-based surveillance strategies are needed to determine the true health, quality-of-life and economic outcomes of these restructuring initiatives. PMID:9347781

  7. The Unprepared Caregiver.

    PubMed

    Moon, Marilyn

    2017-02-01

    Years of studying health care financing and delivery does not prepare you for the actuality of dealing with a serious health event. The practical challenges of our extremely fragmented and complex health care system make it difficult to navigate this world-even when someone is there to help the patient. And, being a caregiver is a far cry from being a health care analyst. There are many lessons to be learned for improving our system: the need for skilled co-ordination support, the need for simplifying and re-orienting the various silos of postacute care, the importance of generating ways to support caregivers, and not least, promoting simple lessons in civility for providers of services.

  8. Religious coping and caregiver well-being in Mexican-American families

    PubMed Central

    Lee, Jerry W.; Nanyonjo, Rebecca D.; Laufman, Larry E.; Torres-Vigil, Isabel

    2017-01-01

    Objective We sought to explore the association of religious and spiritual coping with multiple measures of well-being in Latinos caring for older relatives with long-term or permanent disability, either with or without dementia. Methods Using a multi-dimensional survey instrument, we conducted in-home interviews with 66 predominantly Mexican-American Catholic family caregivers near the US–Mexico border. We assessed caregivers' intrinsic, organizational and non-organizational religiosity with the Duke Religiosity Index, as well as Pargament's brief positive and negative spiritual coping scale to determine the association of religiosity with caregivers' mental and physical health, depressive symptomatology and perceived burden. Results Using regression analysis, we controlled for sociocultural factors (e.g. familism, acculturation), other forms of formal and informal support, care recipients' functional status and characteristics of the caregiving dyad. Intrinsic and organizational religiosity was associated with lower perceived burden, while non-organizational religiosity was associated with poorer mental health. Negative religious coping (e.g. feelings that the caregiver burden is a punishment) predicted greater depression. Conclusion Measures of well-being should be evaluated in relation to specific styles of religious and spiritual coping, given our range of findings. Further investigation is warranted regarding how knowledge of the positive and negative associations between religiosity and caregiving may assist healthcare providers in supporting Latino caregivers. PMID:19197693

  9. Effects of group music intervention on behavioral and psychological symptoms in patients with dementia: a pilot-controlled trial.

    PubMed

    Choi, Ae-Na; Lee, Myeong Soo; Cheong, Kwang-Jo; Lee, Jung-Sook

    2009-01-01

    We investigated the effects of group music intervention on behavioral and psychological symptoms in patients with dementia. Twenty patients were nonrandomly allocated to either a music-intervention group, or an usual care group. The music-intervention group received 50 minutes of music intervention 3 times per week for 5 consecutive weeks. After 15 sessions, the music-intervention group showed significant in improvement with regard to agitation, and the total scores of both patients and caregivers were lower, compared with the control group. These findings suggest that music can improve behavioral and psychological symptoms, especially in patients with dementia and their caregivers.

  10. Primary Care-Based Memory Clinics: Expanding Capacity for Dementia Care.

    PubMed

    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.

  11. Theoretical perspectives concerning positive aspects of caring for elderly persons with dementia: stress/adaptation and existentialism.

    PubMed

    Farran, C J

    1997-04-01

    Research concerning caregivers of persons with dementia has predominantly been guided by a stress/adaptation paradigm. This paradigm, however, does not fully address the issue of how caregivers manage to do so well under difficult circumstances. Existentialism offers an alternate theoretical view for exploring this issue. This article compares and contrasts these two paradigms-their key elements, strengths, and limitations, and areas of convergence and divergence. It identifies implications for future theory development, research, and clinical practice.

  12. [Hypertension and dementia].

    PubMed

    Hanon, O

    2014-06-01

    Prevention and treatment of dementia has turned into a major public health challenge. Several epidemiological studies have indicated a significant association between the presence of hypertension and the onset of dementia (vascular or Alzheimer's type) several years later. Cognitive disorder may be related to focal cerebral lesions of vascular origin (infarctus, lacunae) and/or chronic ischemia of the white matter (white matter lesions) related to arteriosclerosis and/or lipohyalinosis of small perforating arteries high blood pressure in mid-life to later cognitive decline and dementia. Moreover, disorders of cerebral microcirculation and endothelial dysfunction may be associated to blood brain barrier dysfunction and amyloid plaques formation leading to Alzheimer's process. Few randomized clinical trials have included a cognitive assessment and dementia as outcome in their design. They all raise some major criticisms: cognitive assessment was never the main outcome, too short follow-up to study dementia; incomplete assessment of cognition, lost of follow-up and a small proportion of subjects at risk for dementia at inclusion. However, the results of therapeutic trials (SYST-EUR, PROGRESS) open the way to the prevention of dementia (vascular or Alzheimer's type) or cognitive decline by antihypertensive treatments. A meta-analysis including randomized controlled studies, suggests a significant decrease in the risk of dementia with antihypertensive treatment compared to placebo.

  13. Hearing and dementia.

    PubMed

    Hardy, Chris J D; Marshall, Charles R; Golden, Hannah L; Clark, Camilla N; Mummery, Catherine J; Griffiths, Timothy D; Bamiou, Doris-Eva; Warren, Jason D

    2016-11-01

    Hearing deficits associated with cognitive impairment have attracted much recent interest, motivated by emerging evidence that impaired hearing is a risk factor for cognitive decline. However, dementia and hearing impairment present immense challenges in their own right, and their intersection in the auditory brain remains poorly understood and difficult to assess. Here, we outline a clinically oriented, symptom-based approach to the assessment of hearing in dementias, informed by recent progress in the clinical auditory neuroscience of these diseases. We consider the significance and interpretation of hearing loss and symptoms that point to a disorder of auditory cognition in patients with dementia. We identify key auditory characteristics of some important dementias and conclude with a bedside approach to assessing and managing auditory dysfunction in dementia.

  14. "I Do the Best I Can": Caregivers' Perceptions of Informal Caregiving for Older Adults in Belize

    ERIC Educational Resources Information Center

    Vroman, Kerryellen; Morency, Jamme

    2011-01-01

    In this first study of informal caregiving for older adults in Belize, 29 caregivers described their experiences of caregiving, how they perceived and managed the role, and what critical resources they needed. The three main themes identified in the caregiver interviews were "the experiences of caregivers, the rewards of caregiving, and…

  15. Trajectories of Behavioral Disturbance in Dementia

    PubMed Central

    Chow, Tiffany W.; Fridhandler, Jonathan D.; Binns, Malcolm A.; Lee, Albert; Merrilees, Jennifer; Rosen, Howie J.; Ketelle, Robin; Miller, Bruce L.

    2015-01-01

    Predicting the progression of dementia is a challenge for clinicians yet this information is highly valued by patients’ families. An informally observed 4-stage model of dementia can be helpful in educating caregivers and preparing them for what lies ahead. In the behavioral variant of frontotemporal dementia (bvFTD), this model describes the evolution of behavioral disturbances and is characterized by an inflection point between stage 2 (progressively severe behavioral aberration) and stage 3 (increasing apathy and remission of behavior problems). In this study we sought evidence for this model using a database of serial Neuropsychiatric Inventory (NPI) scores for 45 patients with FTD and 47 patients with Alzheimer’s disease (AD). We transformed the NPI scores into a single variable for each participant that represented the rate of change in NPI score over time (NPI slope) and used this as the dependent variable in a multivariate linear regression. Age at onset of dementia, NPI score at initial visit, and duration of illness at first NPI all contributed significantly to the regression model for NPI slope in the bvFTD group. Participants with an initial NPI acquired before 6 years of disease duration tended to have a more positive NPI slope (representing worsening behavioral disturbances) than those with an initial NPI performed after 6 years. None of the aforementioned variables were significantly associated with NPI slope in the AD group. These results support a crescendo-decrescendo trajectory of behavioral symptoms in bvFTD but do not suggest that there is a similar pattern in AD, and further longitudinal data collection is necessary. PMID:22531424

  16. "I do the best I can": caregivers' perceptions of informal caregiving for older adults in Belize.

    PubMed

    Vroman, Kerryellen; Morency, Jamme

    2011-01-01

    In this first study of informal caregiving for older adults in Belize, 29 caregivers described their experiences of caregiving, how they perceived and managed the role, and what critical resources they needed. The three main themes identified in the caregiver interviews were the experiences of caregivers, the rewards of caregiving, and navigating the caregiver role. Caregivers identified positively with the role of care provider and they did not describe it as burdensome nor did they describe role strain. However, caregivers' complaints of poor physical health might be construed as somatic expressions of strain. The caregivers' religiosity was salient to how they viewed and coped with their caregiver role. In conclusion, culture appears to influence positively caregivers' beliefs and perceptions of caregiving in Belize. However, the expected increase in the older population and current circumstances of many caregivers and care recipients means there is a critical need for resources to support caregivers and promote aging in place.

  17. Targeted case finding for dementia in primary care: Surrey Downs dementia diagnosis project

    PubMed Central

    Kallumpuram, Sen; Sudhir Kumar, CT; Khan, Bilal; Gavins, Victoria; Khan, Aalia; Iliffe, Steve

    2015-01-01

    Currently less than half of the estimated number of people with dementia in England receive a formal diagnosis of dementia or have contact with specialist dementia services. Case finding focused on high risk groups may be an effective way to identify the undiagnosed. This joint Surrey Downs Clinical Commissioning Group and Surrey and Borders NHS Foundation Trust quality improvement project aimed to increase the rate of dementia diagnosis across Surrey Downs using specialist link nurses (SLNs). Thirty three GP surgeries covering the entire Surrey Downs area took part in the project. Individuals at high risk of developing dementia were identified from GP electronic disease registers, and were offered screening at their GP practices by SLNs, using a combination of mini cognitive test (Mini-Cog) and functional assessment questionnaire (FAQ). Suitable individuals who screened positive were seen by their GP and where appropriate referred to secondary care services for further evaluation. Based on the presence of risk factors, 6657 (11.9%) people were identified from a total population of 55 845 over 65s, and 1980 (29.7%) completed the screening assessment. Three hundred and fifty eight (18.1%) individuals screened positive and were referred to their GP, who referred 205 (57.2%) of them to the memory services for further assessment. Of those referred, 164 (80%) had a comprehensive specialist assessment. Forty one (20%) declined further assessment, and their GPs were informed. The mean age of the cohort who completed the comprehensive assessment was 82.3 years (SD=4.26), and were predominantly white and male. Fifty four (32.9%) had mild cognitive disorder (MCD), and 101 (61.6%) patients were diagnosed with dementia. The most common dementia was mixed type (43; 42.6%), followed by Alzheimer's dementia (32; 31.7%). The most common risk factor among patients with cognitive impairment (MCD or dementia) was hypertension (69; 44.5 %), followed by ischemic heart disease (64, 41

  18. Management of Behavioral and Psychological Symptoms of Dementia

    PubMed Central

    ŞAHİN CANKURTARAN, Eylem

    2014-01-01

    Symptoms of disturbed perception, thought content, mood, or behavior that frequently occur in patients with dementia are defined as the term “Behavioral and Psychological Symptoms of Dementia (BPSD).” The behavioral symptoms of dementia include physical/verbal aggression, agitation, disinhibition, restlessness, wandering, culturally inappropriate behaviors, sexual disinhibition, and hoarding, and the psychological symptoms of dementia are anxiety, depressive mood, hallucinations and delusions, apathy, and misidentification syndrome. With the cognitive decline in Alzheimer’s Dementia (AD), the frequency of neuropsychiatric symptoms increases. Apathy, depression, irritability, agitation, and anxiety are the most frequently detected neuropsychiatric symptoms of AD. In the mild stage of AD, affective symptoms are more likely to occur; agitated and psychotic behaviors are frequent in patients with moderately impaired cognitive function. When neuropsychiatric symptoms are first detected, medical conditions, such as delirium, infection, dehydration, diarrhea, and drug interactions, must be ruled out. The treatment of mild BPSD must be started with psychosocial approaches, such as behavioral management, caregiver education, and physical activity. Medications are indicated for BPSD symptoms that are refractory to non-pharmacological interventions or severe or jeopardizing the safety of a patient or others, often in conjunction with non-pharmacological interventions.

  19. Team-Based Interprofessional Competency Training for Dementia Screening and Management.

    PubMed

    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.

  20. Caring for the Caregivers: Patterns of Organizational Caregiving.

    ERIC Educational Resources Information Center

    Kahn, William A.

    1993-01-01

    Offers a system-level perspective on job burnout among human service workers, focusing on their internal networks of caregiving relationships. Defines and illustrates five recurring caregiving patterns characterizing agency members' relationships, ranging from supervisor support to mutual withdrawal between supervisors and subordinates. Discusses…

  1. [Diabetes mellitus and dementia].

    PubMed

    Kopf, D

    2015-05-01

    Diabetes mellitus, particularly type 2 diabetes, is a risk factor for dementia and this holds true for incident vascular dementia and Alzheimer's disease. Cerebrovascular complications of diabetes and chronic mild inflammation in insulin resistant states partly account for this increased risk. In addition, cellular resistance to the trophic effects of insulin on neurons and glial cells favor the accumulation of toxic metabolic products, such as amyloid and hyperphosphorylated tau protein (pTau). Weight loss frequently precedes overt cognitive symptoms of Alzheimer's disease. This results in an increased risk of hypoglycemic episodes in stable diabetic patients who are on suitably adjusted doses of oral insulin or insulinotropic antidiabetic drugs. In turn, hypoglycemic episodes may induce further damage in the vulnerable brains of type 2 diabetes patients. Patients with unexplained weight loss, hypoglycemic episodes and subjective memory complaints must be screened for dementia. Once dementia has been diagnosed the goals of diabetes management must be reevaluated as prevention of hypoglycemia becomes more important than tight metabolic control. As weight loss accelerates the rate of cognitive decline, nutritional goals must aim at stabilizing body weight. There is no available evidence on whether drug treatment of diabetes in middle-aged persons can help to prevent dementia; however, physical exercise, mental activity and higher education have preventive effects on the risk of dementia in later life. In addition, nutritional recommendations that are effective in preventing cardiovascular events have also been shown to reduce the risk of dementia.

  2. Mental health and wellbeing in spouses of persons with dementia: the Nord-Trøndelag health study

    PubMed Central

    2014-01-01

    Background Caring for a spouse diagnosed with dementia can be a stressful situation and can put the caregiving partner at risk of loss of mental health and wellbeing. The main aim of this study was to investigate the relationship between dementia and spousal mental health in a population-based sample of married couples older than 55 years of age. The association was investigated for individuals living together with their demented partner, as well as for individuals whose demented partner was living in an institution. Methods Data on dementia were collected from hospitals and nursing homes in the county of Nord-Trøndelag, Norway. These data were combined with data on spousal mental health, which were collected in a population-based health screening: the Nord-Trøndelag Health Study (HUNT). Of 6,951 participating couples (>55 years), 131 included one partner that had been diagnosed with dementia. Results Our results indicate that after adjustment for covariates, having a partner with dementia is associated with lower levels of life satisfaction and more symptoms of anxiety and depression than reported by spouses of elderly individuals without dementia. Spouses living together with a partner diagnosed with dementia experienced moderately lower levels of life satisfaction (0.35 standard deviation [SD]) and more symptoms of depression (0.38 SD) and anxiety (0.23 SD) than did their non-caregiving counterparts. Having a partner with dementia that resided in a nursing home was associated with clearly lower life satisfaction. Compared with non-caregivers, these spouses reported lower levels of life satisfaction (1.16 SD), and also more symptoms of depression (0.38 SD), and more symptoms of anxiety (0.42 SD). Conclusions Having a partner with dementia is associated with loss of mental health and reduced life satisfaction. The risk of adverse mental health outcomes is greatest after the partner’s nursing home admission. PMID:24885732

  3. [Caregivers of individuals with spinal cord injury: caregiver burden].

    PubMed

    Nogueira, Paula Cristina; Rabeh, Soraia Assad Nasbine; Caliri, Maria Helena Larcher; Haas, Vanderlei José

    2013-06-01

    A sectional study that had as its objectives to assess caregiver burden of for caregivers of individuals with Traumatic Spinal Cord Injury (TSCI) and its association with sociodemographic variables (age and sex), health status (self-reported illnesses) and caregiver characteristics (care time in years and daily hours of care). Data were collected by consultation of patient files and individual interviews at home using the instrument, Caregiver Burden Scale (CBScale). The results showed that most burden occurred in the domains: environment, disappointment and general strain. Presenting health problem (for all domains of the CBScale) and spending more hours per day in care (in the domain disappointment) represented the variables associated with burden. Studies of a more confirmatory nature than exploratory between the variables studied can be used to measure the burden obtained in this population of caregivers of individuals with TSCI.

  4. Diagnosing dementia in Dutch general practice: a qualitative study of GPs’ practices and views

    PubMed Central

    Prins, Agnes; Hemke, Feia; Pols, Jeannette; van Charante, Eric P Moll

    2016-01-01

    Background GPs play an important role in recognising the symptoms of dementia; however, little is known about how they perceive their actual and future role in diagnosing dementia. Aim To explore Dutch GPs’ perceptions of their current position in diagnosing dementia, their reasons for referral to secondary care, and views on the future diagnostic role of GPs. Design and setting A qualitative study among Dutch GPs. Method Eighteen GPs participated in a semi-structured interview that ranged from 20 to 60 minutes. Interviews were transcribed verbatim and thematic analysis was performed. Results GPs reported that their role in the diagnostic phase of identifying people with suspected dementia is limited to recognising cognitive problems and deciding whether a patient needs to be referred for further investigation, or whether care could be organised without specialist diagnosis. GPs indicated that they were likely to refer patients if patients/caregivers or dementia case managers requested it, or if they thought it could have consequences for treatment. Typically, GPs do not see the need for referral when their patients are very old and declining slowly. GPs would welcome a more prominent role in diagnosing dementia in their own practice. Conclusion Diagnosing dementia involves a complex balance between patient and carer preferences, the consequences for treatment and care, and the burden of referral. Dutch GPs favour a stronger involvement in diagnosing dementia provided that both resources and diagnostic algorithms are improved. PMID:27114209

  5. Deliberative Assessment of Surrogate Consent in Dementia Research

    PubMed Central

    Kim, Scott Y. H.; Uhlmann, Rebecca A.; Appelbaum, Paul S.; Knopman, David S.; Kim, H. Myra; Damschroder, Laura; Beattie, Elizabeth; Struble, Laura; De Vries, Raymond

    2009-01-01

    Background Research involving incapacitated persons with dementia involves complex scientific, legal, and ethical issues, making traditional surveys of layperson views regarding the ethics of such research challenging. We therefore assessed the impact of democratic deliberation (DD)—involving balanced, detailed education and peer deliberation—on the views of those responsible for persons with dementia. Methods 178 community-recruited caregivers or primary decision-makers for persons with dementia were randomly assigned to either an all-day DD session group or a control group. Educational materials used for the DD session were vetted for balance and accuracy by an interdisciplinary advisory panel. We assessed the acceptability of family surrogate consent for dementia research (‘surrogate-based research’ or SBR) from a societal policy perspective as well as from the more personal perspectives of deciding for a loved one or for oneself (surrogate and self perspectives), assessed at baseline, immediately post-DD session, and a month after DD date, for 4 research scenarios of varying risk-benefit profiles. Results At baseline, a majority in both DD and control groups supported a policy of family consent for dementia research for all research scenarios. The support for a policy of family consent for SBR increased for the DD group, but not for the control group; the change in the DD group was maintained one month later. In the DD group, there were transient changes in attitudes from surrogate or self perspectives; in the control group, there were no changes from baseline in attitude toward surrogate consent from any perspective. Conclusions Intensive, balanced, and accurate education along with peer deliberation provided by democratic deliberation leads to a sustained increase in support for a societal policy of family consent for dementia research among those responsible for dementia patients. PMID:20188635

  6. Delirium Superimposed on Dementia

    PubMed Central

    Steis, Melinda R.; Fick, Donna M.

    2012-01-01

    Delirium is an acute, fluctuating confusional state that results in poor outcomes for older adults. Dementia causes a more convoluted course when coexisting with delirium. This study examined 128 days of documentation to describe what nurses document when caring for patients with dementia who experience delirium. Nurses did not document that they recognized delirium. Common descriptive terms included words and phrases indicating fluctuating mental status, lethargy, confusion, negative behavior, delusions, and restlessness. Delirium is a medical emergency. Nurses are in need of education coupled with clinical and decisional support to facilitate recognition and treatment of underlying causes of delirium in individuals with dementia. PMID:21761816

  7. Caring for Alzheimer's Patients. Supplement to Caregivers' Practical Help to Assist Those Who Care for Patients with Dementia Related Diseases = El Cuidado de los Pacientes de Alzheimer. Suplemento de Ayuda Practica para las Personas Encargadas para Ayudar a los que Cuidan a Pacientes que Sufren de Enfermedades Relacionadas con la Demencia.

    ERIC Educational Resources Information Center

    New York State Office for the Aging, Albany.

    This manual is intended for caregivers of homebound patients with Alzheimer's disease and others who are mentally impaired. It deals with the nature of Alzheimer's, the decline in a patient's abilities, information about available services, and legal and financial issues. The manual provides guidance and suggestions to lessen the daily stress…

  8. Childhood Obesity: The Caregiver's Role.

    ERIC Educational Resources Information Center

    Haschke, Bernadette

    2003-01-01

    Describes the role caregivers play in helping young children dealing with obesity. Examines: (1) causes of childhood obesity; (2) caregiver's position; (3) learning nutrition concepts; (4) preparing and serving healthy foods; (5) encouraging physical activity; (6) working with parents; and (7) assisting an obese child. (SD)

  9. Quality Infant/Toddler Caregiving.

    ERIC Educational Resources Information Center

    Honig, Alice Sterling

    Caregiver-infant interactions in the first years of a child's life provide models and shape patterns of responding that can have consequences throughout the life-span. Research and practice have produced knowledge about the sensitivity of outcomes to characteristics of the infant nurturing situation. Infant caregivers should accept babies' need…

  10. Resurgence of Infant Caregiving Responses

    ERIC Educational Resources Information Center

    Bruzek, Jennifer L.; Thompson, Rachel H.; Peters, Lindsay C.

    2009-01-01

    Two experiments were conducted to identify the conditions likely to produce resurgence among adult human participants. The preparation was a simulated caregiving context, wherein a recorded infant cry sounded and was terminated contingent upon targeted caregiving responses. Results of Experiment 1 demonstrated resurgence with human participants in…

  11. Special Section: Educating Elderly Caregivers.

    ERIC Educational Resources Information Center

    Epstein, Bernice A.; And Others

    1990-01-01

    Four articles in this special section report on (1) Arizona curriculum for home-based caregivers of the elderly in rural communities (Epstein, Koenig); (2) educational programs for nursing home caregivers (Marsden); (3) extension programs for helping low-income elderly with money management (Koonce); and (4) energy education for the elderly…

  12. Emotional Availability: Foster Caregiving Experience

    ERIC Educational Resources Information Center

    Nelson, Dean R.

    2012-01-01

    The purpose of the study was to investigate if the emotional availability of caregivers is explanatory for successful adolescent foster care placement--from initial placement of an adolescent to age eighteen or emancipation from foster care, as mandated by the state of Colorado. Emotional availability of foster caregivers and the phenomenon's…

  13. REMCARE: Pragmatic Multi-Centre Randomised Trial of Reminiscence Groups for People with Dementia and their Family Carers: Effectiveness and Economic Analysis

    PubMed Central

    Orrell, Martin; Bruce, Errollyn; Edwards, Rhiannon T.; Hounsome, Barry; Keady, John; Orgeta, Vasiliki; Rees, Janice

    2016-01-01

    Background Joint reminiscence groups, involving people with dementia and family carers together, are popular, but the evidence-base is limited. This study aimed to assess the effectiveness and cost-effectiveness of joint reminiscence groups as compared to usual care. Methods This multi-centre, pragmatic randomised controlled trial had two parallel arms: intervention group and usual-care control group. A restricted dynamic method of randomisation was used, with an overall allocation ratio of 1:1, restricted to ensure viable sized intervention groups. Assessments, blind to treatment allocation, were carried out at baseline, three months and ten months (primary end-point), usually in the person's home. Participants were recruited in eight centres, mainly through NHS Memory Clinics and NHS community mental health teams. Included participants were community resident people with mild to moderate dementia (DSM-IV), who had a relative or other care-giver in regular contact, to act as informant and willing and able to participate in intervention. 71% carers were spouses. 488 people with dementia (mean age 77.5)were randomised: 268 intervention, 220 control; 350 dyads completed the study (206 intervention, 144 control). The intervention evaluated was joint reminiscence groups (with up to 12 dyads) weekly for twelve weeks; monthly maintenance sessions for further seven months. Sessions followed a published treatment manual and were held in a variety of community settings. Two trained facilitators in each centre were supported by volunteers. Primary outcome measures were self-reported quality of life for the person with dementia (QoL-AD), psychological distress for the carer (General Health Questionnaire, GHQ-28). Secondary outcome measures included: autobiographical memory and activities of daily living for the person with dementia; carer stress for the carer; mood, relationship quality and service use and costs for both. Results The intention to treat analysis (ANCOVA

  14. Patients' and Caregivers' Attributes in a Meaningful Care Encounter: Similarities and Notable Differences

    PubMed Central

    Snellman, Ingrid; Gustafsson, Christine; Gustafsson, Lena-Karin

    2012-01-01

    In today's healthcare system, there is an imbalance between what patients expect of caregivers' care and their perception of the care they get. How is it possible to reduce this imbalance? The aim of this paper was to describe attributes associated with meaningful encounters in the Swedish healthcare system based on patients' and caregivers' written narratives and to note the differences and similarities between the attributes identified by the two groups. This paper is a qualitative descriptive study. The analysis was guided by qualitative content analyses. Based on patients' narratives, attributes associated with a meaningful encounter fell into four categories: the kind-hearted caregiver, the thoughtful caregiver, the mutually oriented caregiver, and the helpful caregiver. Based on caregivers' narratives, the attributes were categorized as being humane, caring through physical contact, caring by nurturing communication, joy and laughter in care, and a sense of mutuality. The results show that there are both similarities and differences in patients' and caregivers' opinions about the attributes of a meaningful encounter. Knowing more about the attributes associated with meaningful encounters makes it possible for caregivers to individualize care for patients and makes it easier to help and support patients in what they most need support with. PMID:22701802

  15. Predictors of Inpatient Utilization among Veterans with Dementia

    PubMed Central

    Godwin, Kyler M.; Morgan, Robert O.; Walder, Annette; Bass, David M.; Judge, Katherine S.; Wilson, Nancy; Snow, A. Lynn; Kunik, Mark E.

    2014-01-01

    Dementia is prevalent and costly, yet the predictors of inpatient hospitalization are not well understood. Logistic and negative binomial regressions were used to identify predictors of inpatient hospital utilization and the frequency of inpatient hospital utilization, respectively, among veterans. Variables significant at the P < 0.15 level were subsequently analyzed in a multivariate regression. This study of veterans with a diagnosis of dementia (n = 296) and their caregivers found marital status to predict hospitalization in the multivariate logistic model (B = 0.493, P = 0.029) and personal-care dependency to predict hospitalization and readmission in the multivariate logistic model and the multivariate negative binomial model (B = 1.048, P = 0.007, B = 0.040, and P = 0.035, resp.). Persons with dementia with personal-care dependency and spousal caregivers have more inpatient admissions; appropriate care environments should receive special care to reduce hospitalization. This study was part of a larger clinical trial; this trial is registered with ClinicalTrials.gov NCT00291161. PMID:24982674

  16. Attachment and caregiving relationships in families affected by parental incarceration.

    PubMed

    Shlafer, Rebecca J; Poehlmann, Julie

    2010-07-01

    This longitudinal, mixed method study focused on 57 families of children who participated in a mentoring program for children of incarcerated parents. Children ranged in age from 4 to 15 years. Monthly interviews were conducted with children, caregivers, and mentors during the first six months of program participation, and questionnaires were administered at intake and six months to assess caregiver-child and incarcerated parent-child relationships, contact with incarcerated parents, and children's behavior problems. Although some children viewed their incarcerated parents as positive attachment figures, other children reported negative feelings toward or no relationship with incarcerated parents. In addition, our assessments of children nine years old and older revealed that having no contact with the incarcerated parent was associated with children reporting more feelings of alienation toward that parent compared to children who had contact. Children's behavior problems were a primary concern, often occurring in a relational context or in reaction to social stigma associated with parental imprisonment.

  17. Collaborative transdisciplinary team approach for dementia care.

    PubMed

    Galvin, James E; Valois, Licet; Zweig, Yael

    2014-01-01

    Alzheimer's disease (AD) has high economic impact and places significant burden on patients, caregivers, providers and healthcare delivery systems, fostering the need for an evaluation of alternative approaches to healthcare delivery for dementia. Collaborative care models are team-based, multicomponent interventions that provide a pragmatic strategy to deliver integrated healthcare to patients and families across a wide range of populations and clinical settings. Healthcare reform and national plans for AD goals to integrate quality care, health promotion and preventive services, and reduce the impact of disease on patients and families reinforcing the need for a system-level evaluation of how to best meet the needs of patients and families. We review collaborative care models for AD and offer evidence for improved patient- and family-centered outcomes, quality indicators of care and potential cost savings.

  18. Frontotemporal dementia: diagnosis, deficits and management

    PubMed Central

    Bott, Nicholas T; Radke, Anneliese; Stephens, Melanie L; Kramer, Joel H

    2016-01-01

    Summary Frontotemporal dementia (FTD) is a progressive neurologic syndrome with diverse clinical presentations and attendant underlying pathologies. Psychiatric prodrome, neuropsychiatric symptoms and language difficulties are common in FTD, but the diversity of presentation raises unique diagnostic challenges that can significantly impact patient care and counsel for caregivers regarding clinical status and prognosis. While neuropsychiatric symptom measures are helpful, more sensitive assessments delineating the specific behavioral and linguistic deficits accompanying FTD are needed. Comprehensive clinical assessment in combination with evaluation of language, socio-emotional functioning, cognition and neuroimaging aid in accurate and early diagnosis and treatment planning. In what follows, we review each of the FTD syndromes, highlight current research investigating the cognitive, behavioral and socio-emotional deficits observed with this disease, address common diagnostic challenges and summarize best practices associated with management of FTD. PMID:25531687

  19. Dementia and driving

    MedlinePlus

    ... medlineplus.gov/ency/patientinstructions/000028.htm Dementia and driving To use the sharing features on this page, ... their independence is being taken away. Signs That Driving May No Longer be Safe People with signs ...

  20. United States Indigenous Populations and Dementia: Is There a Case for Culture-based Psychosocial Interventions?

    PubMed

    Browne, Colette V; Ka'opua, Lana Sue; Jervis, Lori L; Alboroto, Richard; Trockman, Meredith L

    2016-04-05

    Dementia is an issue of increasing importance in indigenous populations in the United States. We begin by discussing what is known about dementia prevalence and elder family caregiving in American Indian, Alaska Native, and Native Hawaiian populations. We briefly highlight examples of culture-based programming developed to address a number of chronic diseases and conditions that disproportionately affect these communities. These programs have produced positive health outcomes in American Indian, Alaska Native, and Native Hawaiian populations and may have implications for research and practice in the dementia context of culture-based interventions. Evidence-based and culture-based psychosocial programming in dementia care for indigenous populations in the United States designed by the communities they intend to serve may offer elders and families the best potential for care that is accessible, respectful, and utilized.

  1. Community-based dementia day programmes: Common elements and outcome measures.

    PubMed

    Weir, Annie; Fouche, Christa

    2017-04-01

    Dementia Day programmes are considered important in supporting the well-being of both people living with dementia and their caregivers. There is, however, limited evidence on the effectiveness of these programmes. This article reports on a study undertaken in New Zealand on the effectiveness of community-based dementia day programmes. The small-scale pilot study was aimed at investigating the elements that make up an effective client-focused dementia day programme and the methods employed by organisations to measure the outcomes of these programmes. A mixed methods approach was employed with multiple stakeholders. The research revealed that effective day programmes comprised five core elements, and that surveys, reporting and auditing processes are routinely used to measure the quality of outcomes of day programmes. Although these findings are reflective of a specific context, it raises concerns about the nature and availability of evidence informing decisions regarding the design and implementation of day programmes internationally.

  2. Living to the bitter end? A personalist approach to euthanasia in persons with severe dementia.

    PubMed

    Gastmans, Chris; De Lepeleire, Jan

    2010-02-01

    The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas.

  3. Person-Centered Primary Care Strategies for Assessment of and Intervention for Aggressive Behaviors in Dementia.

    PubMed

    Desai, Anand; Wharton, Tracy; Struble, Laura; Blazek, Mary

    2017-02-01

    With an increase in the number of individuals affected by dementia, it is imperative for health care providers to be well versed in the most effective ways to manage neuropsychiatric symptoms, such as aggression. Aggression can be particularly hard to manage because it creates risk of harm for formal and informal caregivers, and options for medical intervention are complex and situation dependent. Although multiple guidelines for management of aggression in dementia are available in the literature, their scope is widespread and suggested treatments often vary, making decision making difficult to navigate for busy clinicians. Using a composite case as a model, the current article provides guidelines that take outpatient providers through the steps needed to provide effective treatment for aggression in individuals with dementia. Shifting the current focal point of health care for aggressive dementia patients toward a more person-centered approach will have a positive impact on patient care. [Journal of Gerontological Nursing, 43(2), 9-17.].

  4. From wandering to wayfaring: Reconsidering movement in people with dementia in long-term care.

    PubMed

    Graham, Megan E

    2015-10-29

    The movement of people with dementia in long-term care continues to be an issue of concern among clinicians, caregivers and families. This article will examine the social construction "wandering" and its association with pathology, risk discourse and surveillance technologies. Further, the article will explore the recent shift from the term "wanderer" to the phrase "people who like to walk" in person-centred dementia care. Engaging with Ingold's concept of movement as wayfaring, an alternative becoming-centred understanding of movement and its significance for people with dementia will be presented and illustrated through a case study. The paper concludes that depathologizing movement opens the possibility to see movement in people with dementia as an intention to be alive and to grow, rather than as a product of disease and deterioration. Suggestions for future research and implications for care interventions are discussed.

  5. [Quality of life in people with dementia: review of self-assessment specific scales].

    PubMed

    Lucas-Carrasco, Ramona

    2012-04-07

    The aim of this paper is to review specific measures of Quality of Life (QoL) for dementia, in particular, those scales that can be self-reported by the person with dementia. Data from qualitative studies including persons with dementia, caregivers and professionals has allowed the construction of scales, mainly in the US and England. These scales share common domains related to activities of daily living, psychological aspects and social relations. These scales are being adapted and translated into other languages. This review, compared to previous ones, updates recent validations of these scales into Spanish. Assessment of QoL in persons with dementia contributes to reduce stigma, considers the subject as a person, and introduces a humanistic element on the health and social systems.

  6. Young onset dementia

    PubMed Central

    Sampson, E; Warren, J; Rossor, M

    2004-01-01

    Young onset dementia is a challenging clinical problem with potentially devastating medical and social consequences. The differential diagnosis is wide, and includes a number of rare sporadic and hereditary diseases. However, accurate diagnosis is often possible, and all patients should be thoroughly investigated to identify treatable processes. This review presents an approach to the diagnosis, investigation, and management of patients with young onset dementia, with particular reference to common and treatable causes. PMID:15016933

  7. Neuroimaging and dementia

    SciTech Connect

    Benson, D.F.

    1986-05-01

    The tremendous increase in dementia has created a need for improved diagnostic techniques, and each of the newly established brain imaging techniques has been applied to this problem. Several, particularly computerized tomography (CT), magnetic resonance imaging (MRI), and isotope emission tomography, have proved valuable. Each procedure has strengths--specific disorders that can be diagnosed--and weaknesses--types of dementia that cannot be demonstrated.

  8. Assessment of Health-Related Quality of Life for Caregivers of Alzheimer's Disease Patients

    PubMed Central

    Papadopoulos, Angelos A.; Panagiotakos, Demosthenes B.

    2016-01-01

    Background. Alzheimer's disease (AD) dementia is a chronic neurodegenerative disorder that results in total cognitive impairment and functional decline. Family members are the most usual caregivers worldwide, resulting in a subsequent degradation of their quality of life. Methods. During November 2013–March 2014 in Athens, Greece, 155 AD patients' family caregivers' Health-Related Quality of Life and existence of depressive symptomatology were assessed. Results. A strong negative correlation between the dimensions of HRQoL and the scores of the depression scale was revealed. AD patients' caregivers have a lower HRQoL almost in all dimensions compared to the Greek urban general population. The caregivers' social role, the existence of emotional problems, and their mental health status led to this result. Furthermore significantly important differences in caregivers' total HRQoL and depressive symptomatology were indicated in relation to their gender, hypertension existence, patient care frequency, cohabitation with the patient, disease aggravation, and economic status. Conclusions. Caring for relatives with AD strongly correlates with negative caregivers' HRQoL scores and adversely affects their depressive symptomatology. This negative correlation is enhanced in the later stages of the disease, in greater frequency of care, through living with a patient, in poor financial status, and with the existence of a chronic illness. PMID:28083154

  9. Availability and Primary Health Care Orientation of Dementia-Related Services in Rural Saskatchewan, Canada

    PubMed Central

    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. PMID:26496646

  10. Caregiver Mental Health and Potentially Harmful Caregiving Behavior: The Central Role of Caregiver Anger

    ERIC Educational Resources Information Center

    MacNeil, Gordon; Kosberg, Jordan I.; Durkin, Daniel W.; Dooley, W. Keith; DeCoster, Jamie; Williamson, Gail M.

    2010-01-01

    Purpose: Caregivers feeling stress and experiencing mental health problems can be at risk for engaging in abusive acts against elderly care recipients. Potentially harmful behavior (PHB) was used as a measure of caregivers' engagement in, or fear of engagement in, behavior that places dependent care recipients at risk of physical and/or…

  11. Caregiver Burden in Caregivers of Older Adults with Advanced Illness

    PubMed Central

    Garlo, Katherine; O’Leary, John R.; Van Ness, Peter H.; Fried, Terri R.

    2010-01-01

    OBJECTIVES To examine caregiver burden over time among caregivers of patients with advanced chronic disease. DESIGN Observational cohort with interviews over 12 months. PARTICIPANTS Caregivers of 179 community-living persons age ≥ 60 years with advanced cancer, heart failure (HF), or chronic obstructive pulmonary disease (COPD). MEASUREMENTS Caregiver burden assessed using a short-form of the Zarit Burden Inventory (ZBI) to measure psychosocial distress. RESULTS At baseline, the median caregiver burden was 5 (interquartile range [IQR 1,11]), which indicates that the caregiver endorsed having at least 2 of 10 distressing concerns at least some of the time. Only 10% reported no burden. Although scores increased modestly over time, the association between time and burden was not significant in longitudinal multivariable analysis. High burden was associated with caregivers’ need for more help with daily tasks (odds ratio [OR] = 23.13, 95% confidence interval [CI] = 5.94, 90.06) and desire for greater communication with the patient (OR = 2.53, 95% CI = 1.16, 5.53). The longitudinal multivariable analysis did not yield evidence of associations of burden with patient sociodemographic or health characteristics. CONCLUSION Caregiver burden was common among caregivers of patients with cancer, HF, and COPD. High burden was associated with the caregiver’s report of need for greater help with daily tasks but not with objective measures of the patient’s need for assistance, such as symptoms or functional status, suggesting that burden may be a measure of the caregiver’s ability to adapt to the caregiving role. PMID:21087225

  12. Early Dementia Screening.

    PubMed

    Panegyres, Peter K; Berry, Renee; Burchell, Jennifer

    2016-01-21

    As the population of the world increases, there will be larger numbers of people with dementia and an emerging need for prompt diagnosis and treatment. Early dementia screening is the process by which a patient who might be in the prodromal phases of a dementing illness is determined as having, or not having, the hallmarks of a neurodegenerative condition. The concepts of mild cognitive impairment, or mild neurocognitive disorder, are useful in analyzing the patient in the prodromal phase of a dementing disease; however, the transformation to dementia may be as low as 10% per annum. The search for early dementia requires a comprehensive clinical evaluation, cognitive assessment, determination of functional status, corroborative history and imaging (including MRI, FDG-PET and maybe amyloid PET), cerebrospinal fluid (CSF) examination assaying Aβ1-42, T-τ and P-τ might also be helpful. Primary care physicians are fundamental in the screening process and are vital in initiating specialist investigation and treatment. Early dementia screening is especially important in an age where there is a search for disease modifying therapies, where there is mounting evidence that treatment, if given early, might influence the natural history-hence the need for cost-effective screening measures for early dementia.

  13. Early Dementia Screening

    PubMed Central

    Panegyres, Peter K.; Berry, Renee; Burchell, Jennifer

    2016-01-01

    As the population of the world increases, there will be larger numbers of people with dementia and an emerging need for prompt diagnosis and treatment. Early dementia screening is the process by which a patient who might be in the prodromal phases of a dementing illness is determined as having, or not having, the hallmarks of a neurodegenerative condition. The concepts of mild cognitive impairment, or mild neurocognitive disorder, are useful in analyzing the patient in the prodromal phase of a dementing disease; however, the transformation to dementia may be as low as 10% per annum. The search for early dementia requires a comprehensive clinical evaluation, cognitive assessment, determination of functional status, corroborative history and imaging (including MRI, FDG-PET and maybe amyloid PET), cerebrospinal fluid (CSF) examination assaying Aβ1–42, T-τ and P-τ might also be helpful. Primary care physicians are fundamental in the screening process and are vital in initiating specialist investigation and treatment. Early dementia screening is especially important in an age where there is a search for disease modifying therapies, where there is mounting evidence that treatment, if given early, might influence the natural history—hence the need for cost-effective screening measures for early dementia. PMID:26838803

  14. Study partners perform essential tasks in dementia research and can experience burdens and benefits in this role.

    PubMed

    Black, Betty S; Taylor, Holly A; Rabins, Peter V; Karlawish, Jason

    2016-05-13

    Most studies that enroll individuals with dementia require a study partner for each participant. Study partners-usually family members-perform several key roles: accompanying the participant to visits, providing information about the participant, and assisting with procedures such as taking medication. Little is known, however, about their experiences when performing these roles. Dementia researchers and institutional review boards need to know these experiences because the study partner role is one key factor in a study's success. This prospective qualitative study, using up to three semi-structured interviews with 62 study partners involved in a range of dementia studies, documented their subjective experiences. Content analysis demonstrates that study partners perform a range of tasks-often within the context of being a caregiver-that enable cognitively impaired individuals to participate in dementia research. These tasks present study partners with unique burdens and benefits, some of which dementia researchers and institutional review boards can address.

  15. ACNP White Paper: Update on Use of Antipsychotic Drugs in Elderly Persons with Dementia

    PubMed Central

    Jeste, Dilip V.; Blazer, Dan; Casey, Daniel; Meeks, Thomas; Salzman, Carl; Schneider, Lon; Tariot, Pierre; Yaffe, Kristine

    2008-01-01

    In elderly persons, antipsychotic drugs are clinically prescribed off-label for a number of disorders outside of their Food and Drug Administration (FDA)-approved indications (schizophrenia and bipolar disorder). The largest number of antipsychotic prescriptions in older adults is for behavioral disturbances associated with dementia. In April 2005, the FDA, based on a meta-analysis of 17 double-blind randomized placebo-controlled trials among elderly people with dementia, determined that atypical antipsychotics were associated with a significantly (1.6−1.7 times) greater mortality risk compared with placebo, and asked that drug manufacturers add a ‘black box’ warning to prescribing information for these drugs. Most deaths were due to either cardiac or infectious causes, the two most common immediate causes of death in dementia in general. Clinicians, patients, and caregivers are left with unclear choices of treatment for dementia patients with psychosis and/or severe agitation. Not only are psychosis and agitation common in persons with dementia but they also frequently cause considerable caregiver distress and hasten institutionalization of patients. At the same time, there is a paucity of evidence-based treatment alternatives to antipsychotics for this population. Thus, there is insufficient evidence to suggest that psychotropics other than antipsychotics represent an overall effective and safe, let alone better, treatment choice for psychosis or agitation in dementia; currently no such treatment has been approved by the FDA for these symptoms. Similarly, the data on the efficacy of specific psychosocial treatments in patients with dementia are limited and inconclusive. The goal of this White Paper is to review relevant issues and make clinical and research recommendations regarding the treatment of elderly dementia patients with psychosis and/or agitation. The role of shared decision making and caution in using pharmacotherapy for these patients is

  16. The influence of caregiving stressors, social support, and caregiving appraisal on marital functioning among African American wife caregivers.

    PubMed

    Chadiha, Letha A; Rafferty, Jane; Pickard, Joseph

    2003-10-01

    Using a stress and coping framework, we examined the influence of caregiving stressors, social support, and caregiving appraisal on the marital functioning of 100 African American wife caregivers. Results of separate multivariate analyses revealed received church support, caregiving burden, and caregiving satisfaction significantly predicted wives' marital functioning, when caregivers' background characteristics (age and education), length of caregiving, whether first marriage, and urban versus rural location were controlled. Receiving church support was associated with increased marital functioning. Lower levels of caregiving burden were associated with increased marital functioning. Higher levels of caregiving satisfaction were associated with increased marital functioning. Findings illuminate wives' caregiving and marital experiences, and have implications for family therapy and future research.

  17. The Resources for Enhancing Alzheimer’s Caregiver Health (REACH): Project Design and Baseline Characteristics

    PubMed Central

    Wisniewski, Stephen R.; Belle, Steven H.; Marcus, Susan M.; Burgio, Louis D.; Coon, David W.; Ory, Marcia G.; Burns, Robert; Schulz, Richard

    2008-01-01

    The Resources for Enhancing Alzheimer’s Cargiver Health (REACH) project was designed to test promising interventions for enhancing family caregiving for persons with dementia. The purpose of this article is to describe the research design, interventions, and outcome measures used in REACH and to characterize the sample recruited for the study. Nine interventions and 2 control conditions were implemented at 6 sites; 1,222 dyads were randomly assigned to an intervention or a control condition. The caregiver sample was 18.6% male with an average age of 62.3 years (56% Caucasian, 24% Black, and 19% Hispanic). Caregivers reported high levels of depressive symptoms and moderate burden. Care recipients were older, with a mean age of 79, and were moderately to severely impaired with mean Mini-Mental State Exam scores of 13/30. PMID:14518801

  18. Can cultural values help explain the positive aspects of caregiving among Chinese American caregivers?

    PubMed

    Tang, Maggie

    2011-01-01

    This study used an adaptation of the caregivers' stress model to examine the positive aspects of caregiving with 113 Chinese American family caregivers who provided care to their elderly relatives. The hierarchical multiple regression analysis indicated that combination of caregiver background characteristics, stressors, and cultural values had direct effects on positive aspects of caregiving. Unlike previous studies in which cultural values were not measured, this study found that cultural values helped explain positive aspects of caregiving. Specifically, cultural values, caregiver's health, and caregiver's age predicted positive aspects of caregiving. Service implications are discussed based upon the findings.

  19. Selected Resources on Dementia and Alzheimer's Disease: An Annotated Bibliography for Educators and Consumers. Special Reference Briefs.

    ERIC Educational Resources Information Center

    Frazier, Billie H.; And Others

    This annotated bibliography provides information on Alzheimer's disease and other forms of dementia in older adults. Written for both educators and consumers, citations especially appropriate for family caregivers, friends, neighbors, and other family members are identified with an asterisk (*). A brief introduction discusses the incidence of…

  20. Translation of Two Evidence-Based Programs for Training Families to Improve Care of Persons with Dementia

    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…

  1. Advance care treatment plan (ACT-Plan) for African American family caregivers: a pilot study.

    PubMed

    Bonner, Gloria J; Wang, Edward; Wilkie, Diana J; Ferrans, Carol E; Dancy, Barbara; Watkins, Yashika

    2014-01-01

    Research is limited on end-of-life treatment decisions made by African American family caregivers. In a pilot study, we examined the feasibility of implementing an advance care treatment plan (ACT-Plan), a group-based education intervention, with African American dementia caregivers. Theoretically based, the ACT-Plan included strategies to enhance knowledge, self-efficacy, and behavioral skills to make end-of-life treatment plans in advance. Cardiopulmonary resuscitation, mechanical ventilation, and tube feeding were end-of-life treatments discussed in the ACT-Plan. In a four-week pre/posttest two-group design at urban adult day care centers, 68 caregivers were assigned to the ACT-Plan or attention-control health promotion conditions. Findings strongly suggest that the ACT-Plan intervention is feasible and appropriate for African American caregivers. Self-efficacy and knowledge about dementia, cardiopulmonary resuscitation, mechanical ventilation, and tube feeding increased for ACT-Plan participants but not for the attention-control. More ACT-Plan than attention-control participants developed advance care plans for demented relatives. Findings warrant a randomized efficacy trial.

  2. Systematic Assessment of Caregiving Skill Performance by Individuals with Tetraplegia and Their Caregivers

    DTIC Science & Technology

    2013-10-01

    Caregiving Skill Performance by Individuals with Tetraplegia and Their Caregivers PRINCIPAL INVESTIGATOR: Jeanne M. Zanca, PhD, MPT...5a. CONTRACT NUMBER Systematic Assessment of Caregiving Skill Performance by Individuals with Tetraplegia and Their Caregivers 5b. GRANT NUMBER...systematically evaluate and describe competence in self-direction of care by persons with tetraplegia (PWTs) and provision of care by their caregivers

  3. Stress Process Model for Individuals With Dementia

    PubMed Central

    Judge, Katherine S.; Menne, Heather L.; Whitlatch, Carol J.

    2010-01-01

    Purpose: Individuals with dementia (IWDs) face particular challenges in managing and coping with their illness. The experience of dementia may be affected by the etiology, stage, and severity of symptoms, preexisting and related chronic conditions, and available informal and formal supportive services. Although several studies have examined particular features of IWD’s illness experience, few draw upon a conceptual model that outlines the global illness experience and the resulting stressors that commence with symptom onset, proliferate over time, and continue through the later stages of cognitive loss. Building on the work of Pearlin and colleagues (1990, Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583–594), this article proposes a stress process model (SPM) for IWDs that conceptualizes and examines the illness experience of IWDs. Implications: The proposed SPM for IWDs serves as a guide to (a) consider and understand the short- and long-term complexities of the illness experience for IWDs, (b) investigate specific hypotheses by outlining key stressors in the illness experience and by positing relationships among stressors and outcomes, and (c) help inform the development of interventions to prevent or reduce the negative stressors and enhance the positive experiences of living with a dementing illness. PMID:20022935

  4. A random effects multinomial logit analysis of using Medicare and VA healthcare among veterans with dementia

    PubMed Central

    Zhu, Carolyn W.; Livote, Elayne E.; Ross, Joseph S.; Penrod, Joan D.

    2011-01-01

    Aims To examine longitudinal patterns of VA-only use, dual VA and Medicare use, or Medicare-only use among veterans with dementia. Methods Data on VA and Medicare use (1998–2001) were obtained from and VA administrative datasets and Medicare claims for 2,137 male veterans with a formal diagnosis of Alzheimer’s disease or vascular dementia enrolled in the National Longitudinal Caregiver Study. A random effects multinomial logit model accounting for unobserved individual heterogeneity was used to estimate the effects of patient and caregiver characteristics on use group over time. Results Compared to VA-only use, dual VA and Medicare use was associated with being white, married, higher education, having private insurance, Medicaid, low VA priority level, more functional limitations, and having lived in a nursing home or died in that year. Medicare-only use was associated with older age, being married, higher education, having private insurance, low VA priority level, living further from a VA Medical Center, having more comorbidities, functional limitations, and having lived in a nursing home or died. Veterans whose caregivers reported better health were more likely to be dual users, but those whose caregivers reported more comorbidities were more likely to use Medicare only. Discussion Different aspects of veterans’ needs and caregiver characteristics have differential effect on where veterans seek care. Efforts to coordinate care between VA and Medicare providers are necessary to ensure patients receive high quality care. PMID:20635273

  5. Family solidarity and informal care: the case of care for people with dementia.

    PubMed

    ter Meulen, Ruud; Wright, Katharine

    2012-09-01

    According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia: ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role.

  6. Cancer Caregivers Information Needs and Resource Preferences

    PubMed Central

    Longacre, Margaret L.

    2013-01-01

    This study sought to characterize the need for information about personal psychosocial care, providing direct care, and managing care among cancer caregivers, and explore preferred resources for caregiving information. Methods Data comes from cross-sectional telephone interviews of 1,247 family caregivers, which included 104 cancer caregivers. Results A majority of cancer caregivers expressed one or more information need for each of the three content categories. Four out of ten caregivers expressed needing information about managing physical and emotional stress. A significantly higher percentage of male caregivers reported needing more information pertinent to providing direct care than females. Heightened objective burden was significantly associated with caregivers preferring to receive information from health professionals than informal sources (e.g., Internet), while the opposite was found among caregivers with lower objective burden. Conclusion These findings suggest that specific types of information and resources may be most relevant to specific subgroups of cancer caregivers. PMID:23553000

  7. Severe potential drug-drug interactions in older adults with dementia and associated factors

    PubMed Central

    Bogetti-Salazar, Michele; González-González, Cesar; Juárez-Cedillo, Teresa; Sánchez-García, Sergio; Rosas-Carrasco, Oscar

    2016-01-01

    OBJECTIVE: To identify the main severe potential drug-drug interactions in older adults with dementia and to examine the factors associated with these interactions. METHOD: This was a cross-sectional study. The enrolled patients were selected from six geriatrics clinics of tertiary care hospitals across Mexico City. The patients had received a clinical diagnosis of dementia based on the current standards and were further divided into the following two groups: those with severe drug-drug interactions (contraindicated/severe) (n=64) and those with non-severe drug-drug interactions (moderate/minor/absent) (n=117). Additional socio-demographic, clinical and caregiver data were included. Potential drug-drug interactions were identified using Micromedex Drug Reax 2.0® database. RESULTS: A total of 181 patients were enrolled, including 57 men (31.5%) and 124 women (68.5%) with a mean age of 80.11±8.28 years. One hundred and seven (59.1%) patients in our population had potential drug-drug interactions, of which 64 (59.81%) were severe/contraindicated. The main severe potential drug-drug interactions were caused by the combinations citalopram/anti-platelet (11.6%), clopidogrel/omeprazole (6.1%), and clopidogrel/aspirin (5.5%). Depression, the use of a higher number of medications, dementia severity and caregiver burden were the most significant factors associated with severe potential drug-drug interactions. CONCLUSIONS: Older people with dementia experience many severe potential drug-drug interactions. Anti-depressants, antiplatelets, anti-psychotics and omeprazole were the drugs most commonly involved in these interactions. Despite their frequent use, anti-dementia drugs were not involved in severe potential drug-drug interactions. The number and type of medications taken, dementia severity and depression in patients in addition to caregiver burden should be considered to avoid possible drug interactions in this population. PMID:26872079

  8. Behavioural and psychological symptoms of dementia in Down syndrome: Early indicators of clinical Alzheimer's disease?

    PubMed

    Dekker, Alain D; Strydom, André; Coppus, Antonia M W; Nizetic, Dean; Vermeiren, Yannick; Naudé, Petrus J W; Van Dam, Debby; Potier, Marie-Claude; Fortea, Juan; De Deyn, Peter P

    2015-12-01

    Behavioural and Psychological Symptoms of Dementia (BPSD) are a core symptom of dementia and are associated with suffering, earlier institutionalization and accelerated cognitive decline for patients and increased caregiver burden. Despite the extremely high risk for Down syndrome (DS) individuals to develop dementia due to Alzheimer's disease (AD), BPSD have not been comprehensively assessed in the DS population. Due to the great variety of DS cohorts, diagnostic methodologies, sub-optimal scales, covariates and outcome measures, it is questionable whether BPSD have always been accurately assessed. However, accurate recognition of BPSD may increase awareness and understanding of these behavioural aberrations, thus enabling adaptive caregiving and, importantly, allowing for therapeutic interventions. Particular BPSD can be observed (long) before the clinical dementia diagnosis and could therefore serve as early indicators of those at risk, and provide a new, non-invasive way to monitor, or at least give an indication of, the complex progression to dementia in DS. Therefore, this review summarizes and evaluates the rather limited knowledge on BPSD in DS and highlights its importance and potential for daily clinical practice.

  9. Coordinated Care Management For Dementia In A Large, Academic Health System

    PubMed Central

    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

  10. End-of-life care for people with dementia from ethnic minority groups: a systematic review.

    PubMed

    Connolly, Amanda; Sampson, Elizabeth L; Purandare, Nitin

    2012-02-01

    A systematic review of the literature was conducted to examine the relationship between ethnic minority status and provision of end-of-life care for people with dementia. It included all empirical research on people with dementia or severe cognitive impairment or their caregivers and with ethnic minority people as a subgroup in examining an outcome involving end-of-life care processes or attitudes toward end-of-life care. Two authors independently rated quality of included studies; 20 studies met eligibility criteria and were included in the review: 19 quantitative and one qualitative. All articles were based in the United States, with African American, Hispanic, and Asian groups being the ethnic minorities. Artificial nutrition and other life-sustaining treatments were more frequent and decisions to withhold treatment less common in African American and Asian groups. The qualitative evidence, albeit limited, found that attitudes toward end-of-life care were more similar than different between different ethnic groups. Differences in hospice usage patterns were less consistent and potentially influenced by factors such as study setting and dementia severity. Caregivers' experiences differed between ethnic groups, whereas levels of strain experienced were similar. Disparities in end-of-life care for people with dementia from ethnic minority groups appear to exist and may be due to the double disadvantage of dementia and ethnic minority status. Further research is needed in other western multicultural countries, with a focus on prospective qualitative studies to understand the underlying reasons for these differences, not just their occurrence.

  11. Management of neuropsychiatric symptoms of dementia in clinical settings: recommendations from a multidisciplinary expert panel.

    PubMed

    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.

  12. Hospital Admissions for Malnutrition and Dehydration in Patients With Dementia.

    PubMed

    Marshall, Katherine A; Burson, Rosanne; Gall, Kristyn; Saunders, Mitzi M

    2016-01-01

    Dehydration and malnutrition are commonly experienced by patients with dementia and can result in hospitalizations and decreased quality of life. The purpose of this study was to explore and describe retrospectively, the incidence and correlations of variables that may precede hospitalizations for dehydration/malnutrition in the community-dwelling patient with dementia. Data from the Outcome and Assessment Information Set (OASIS) Start of Care (SOC) on 44 patients served by a Michigan home care agency were retrieved for analysis. This study did not reveal any single or collection of variables that would predict risk for hospitalization for dehydration/malnutrition. With the lack of specific predictors of hospitalization related to dehydration and malnutrition, clinicians need to place high priority on risk-lowering strategies and preventive education for patients, family, and caregivers.

  13. Emerging roles for telemedicine and smart technologies in dementia care

    PubMed Central

    Bossen, Ann L; Kim, Heejung; Williams, Kristine N; Steinhoff, Andreanna E; Strieker, Molly

    2015-01-01

    Demographic aging of the world population contributes to an increase in the number of persons diagnosed with dementia (PWD), with corresponding increases in health care expenditures. In addition, fewer family members are available to care for these individuals. Most care for PWD occurs in the home, and family members caring for PWD frequently suffer negative outcomes related to the stress and burden of observing their loved one’s progressive memory and functional decline. Decreases in cognition and self-care also necessitate that the caregiver takes on new roles and responsibilities in care provision. Smart technologies are being developed to support family caregivers of PWD in a variety of ways, including provision of information and support resources online, wayfinding technology to support independent mobility of the PWD, monitoring systems to alert caregivers to changes in the PWD and their environment, navigation devices to track PWD experiencing wandering, and telemedicine and e-health services linking caregivers and PWD with health care providers. This paper will review current uses of these advancing technologies to support care of PWD. Challenges unique to widespread acceptance of technology will be addressed and future directions explored. PMID:26636049

  14. Contact dermatitis

    MedlinePlus

    Dermatitis - contact; Allergic dermatitis; Dermatitis - allergic; Irritant contact dermatitis; Skin rash - contact dermatitis ... There are 2 types of contact dermatitis. Irritant dermatitis: This ... can be by contact with acids, alkaline materials such as soaps ...

  15. How Do Family Caregivers of Older People Give Up Caregiving?

    PubMed Central

    Mortazavi, Hamed; Peyrovi, Hamid; Joolaee, Soodabeh

    2015-01-01

    Background Population aging has social, economic and political consequences. Most family caregivers prefer to care for their family member older person with chronic disease at home. Despite traditional culture within Iranian families, in some cases, hospitalization of the elderly in nursing home is inevitable, and this affects the old person and his/her family. The aim of this study was to explain how Iranian family cargivers give up caring their older person with chronic condition at home. Methods A grounded theory approach was used to conduct the study. The study setting included four nursing homes under the auspices of Iran Welfare Organization. Fourteen participants were recruited through purposive sampling. Data were collected from December 2010 to March 2011 by Semi-structured interviews lasting about 17 to 95 minutes (average 52 minutes). Constant comparative analysis was used to analyze the data. Results Three main categories appeared at the end of the analysis: “going out of the road of usual life”, “challenge of meeting older person, family and caregivers care needs”, and “the appearance of inconstancy in the family”. They explained exclusively how family caregivers of old people give up caregiving. Conclusion Health care providers are recommended to become familiar with challenges of family caregivers in taking care of older person with chronic disease at home, and then organize their supportive and consulting actions according to family situations in order to improve the life quality of older person and family caregivers. PMID:26171407

  16. Caregiver Burden in Alzheimer’s Disease: Cross Sectional and Longitudinal Patient Correlates

    PubMed Central

    Mohamed, Somaia; Rosenheck, Robert; Lyketsos, Kostas; Schneider, Lon S.

    2014-01-01

    Objectives Alzheimer disease (AD) imposes a severe burden upon patients and their caregivers. Although there is substantial evidence of the adverse impact of burden, considerably less is known about its specific correlates and potential causes. Design We use data from the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE)-AD study to examine the relationship of burden and depression among AD caregivers to patient and caregiver sociodemographic characteristics, patients’ cognitive status, psychiatric and behavioral symptoms, functional abilities, quality of life, and intensity of care provided by caregivers. Setting CATIE-AD included outpatients in usual care settings, and assessed treatment outcomes over nine-months. Participants Data were examined from 421 ambulatory outpatients with a diagnosis of dementia of the Alzheimer's type or probable AD with agitation or psychosis. Measures The Burden Interview, the Beck Depression Inventory, and the Caregiver Distress Scale were used to evaluate caregiver burden. Results More severe psychiatric and behavioral problems and decreased patient quality of life, as well as lower functional capability were significantly associated with higher levels of burden and depression among caregivers at baseline. Six month changes showed that decreased symptoms and improved quality of life were associated with decreased burden and accounted for most of the explained variance in change in burden measures. Conclusion Severity of psychiatric symptoms, behavioral disturbances and patients’ quality of life are the main correlates of caregivers’ experience burden. Psychosocial and pharmacologic interventions targeting these two aspects of the disorder are likely to not only alleviate patient suffering but also promote caregiver well-being. PMID:20808108

  17. Brain function, disease and dementia.

    PubMed

    Sandilyan, Malarvizhi Babu; Dening, Tom

    2015-05-27

    Dementia is a consequence of brain disease. This article, the second in this series on dementia, discusses normal brain function and how certain functions are localised to different areas of the brain. This is important in determining the symptoms of dementia, depending on which parts of the brain are most directly involved. The most common types of dementia - Alzheimer's disease, vascular dementia, dementia with Lewy bodies and frontotemporal dementia - affect the brain in different ways and cause different changes at the microscopic level. Dementia is affected by genetics, and recent advances in molecular techniques have improved our understanding of some of the mechanisms involved, which in turns suggests possibilities for new treatments in the future.

  18. Dementia screening using computerized tests.

    PubMed

    Gualtieri, C Thomas

    2004-01-01

    The preclinical phase of dementia usually precedes the clinical diagnosis by many years. Early detection of dementing conditions during this preclinical phase may provide opportunities for treatments that may slow or mitigate progression. Conventional assessment tools usually can only detect dementia when the symptoms are overt and the disease is well-established. Computerized neurocognitive screening tools hold promise for diagnosing dementia in its early phase. The use, performance and development of several computerized screening tools to diagnose and monitor patients with pre-dementias and dementia are reviewed. The ability to accurately assess the presence of dementia clearly has direct relevance to insurance risk assessment and risk management. As new treatments appear, their role in clinical management of dementia patients will increase as well. In a future issue, the differential diagnosis of dementias related to the findings on these screening tools will be reviewed.

  19. Symptoms of Lewy Body Dementia

    MedlinePlus

    ... usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making. Other causes of dementia ...

  20. Cognitive-behavioral treatment for anxiety in patients with dementia: two case studies.

    PubMed

    Kraus, Cynthia A; Seignourel, Paul; Balasubramanyam, Valli; Snow, A Lynn; Wilson, Nancy L; Kunik, Mark E; Schulz, Paul E; Stanley, Melinda A

    2008-05-01

    Anxiety is common in dementia and is associated with decreased independence and increased risk of nursing home placement. However, little is known about the treatment of anxiety in dementia. This article reports results from two patients who were treated with a modified version of cognitive-behavioral therapy for anxiety in dementia (CBT-AD). Modifications were made in the content, structure, and learning strategies of CBT to adapt skills to the cognitive limitations of these patients and include collaterals (i.e., family members, friends, or other caregivers) in the treatment process. The patients received education and awareness training and were taught the skills of diaphragmatic breathing, coping self-statements, exposure, and behavioral activation. The Clinical Dementia Rating (CDR) Scale was used to characterize dementia severity and determine eligibility for treatment (a CDR score of 0.5 to 2.0 was required for participation). Other measures included the Rating Anxiety in Dementia scale, the Neuropsychiatric Inventory Anxiety subscale, and the Mini International Neuropsychiatric Interview. Outcome data showed improvement in anxiety as measured by standardized rating scales. We conclude that CBT-AD is potentially useful in treating anxiety in dementia patients and that this technique merits further study.

  1. Gender, citizenship and dementia care: a scoping review of studies to inform policy and future research.

    PubMed

    Bartlett, Ruth; Gjernes, Trude; Lotherington, Ann-Therese; Obstefelder, Aud

    2016-03-17

    Gender is a neglected dimension in public discourse related to people with dementia. Those living with this condition are typically portrayed in policies and strategies in gender neutral terms as 'people with dementia' and 'family carers' as if gender does not matter, when clearly it does. The purpose of this scoping review was to take stock of knowledge about gender differences in relation to dementia care to inform policy and future research. The work is grounded in a feminist perspective to citizenship, as this provide a lens with which to expose and examine gendered assumptions within dementia studies. A search of four databases, including CINAHL, Web of Science, Medline and Cochrane was conducted using systematic techniques between May and July 2014. A repeat search was conducted in February 2015. We found a significant amount of valuable research concerned with gender differences in relation to dementia care published from 1990 to 2014; the majority of which lacks a feminist citizenship perspective. Moreover, a disproportionate number of studies focused solely on caregivers rather than citizens with dementia. As such, questions about gender equality are not being raised and the voices of men and women with dementia are silent. Thus we argue for increased gender-sensitivity in policy making and recommend that social scientists inject a feminist citizenship perspective into their work.

  2. Women and War, Children and War: Stretching the Bonds of Caregiving.

    ERIC Educational Resources Information Center

    McNamee, Abigail S.

    Many things stretch the bonds between caregiver and child, such as war, stress, and trauma. This paper reviews the literature on children who are in direct contact with war or indirect contact with war through television or others' conversations. It also describes the effects of war on children and their families, and children's psychological…

  3. A changing landscape for advance directives in dementia research.

    PubMed

    Pierce, Robin

    2010-02-01

    The number of persons afflicted by dementia has increased steadily. The need for research leading to diagnostic and therapeutic interventions is widely recognized. However, dementia patients eventually lose the capacity to consent to the very research that could lead to discoveries of effective interventions. Worldwide, surrogate decision-making remains the primary means of consent for this population. This significantly restricts the autonomy of competent patients who wish to prospectively consent to research and do not wish to relinquish this decision to a third party. Advance research directives (ARDs) have been proposed as a mechanism for prospective consent for persons who anticipate cognitive impairment, as in the case of prodromal or early stage dementia patients. Currently, few guidelines specifically address the use of ARDs despite calls for official recognition. This absence of official guidelines regarding ARDs renders this mechanism susceptible to misuse, under-use, or non-use in instances where it could be advantageous for individuals, their families/caregivers, and progress in dementia research and treatment. This paper explores the changing landscape of ARDs, identifying relevant scientific, social, and policy developments, and queries whether, under these circumstances, reticence to use, recognize, or regulate ARDs is justified. It addresses some of the persistent issues related to vulnerability, the role of surrogates, and scope of prospective consent, and concludes that ARDs can serve as an important mechanism of autonomy and empowerment, and that protections should be crafted such that the availability of this option is not limited to those who also appoint a surrogate.

  4. Sundowning in Dementia: Clinical Relevance, Pathophysiological Determinants, and Therapeutic Approaches

    PubMed Central

    Canevelli, Marco; Valletta, Martina; Trebbastoni, Alessandro; Sarli, Giuseppe; D’Antonio, Fabrizia; Tariciotti, Leonardo; de Lena, Carlo; Bruno, Giuseppe

    2016-01-01

    Sundowning means the emergence or worsening of neuropsychiatric symptoms (NPS) in the late afternoon or early evening. This syndrome has been recognized since a long time in the field of dementing illnesses and is well known among most of health-care providers involved in the assistance of people with dementia. Indeed, it represents a common manifestation among persons with dementia and is associated with several adverse outcomes (such as institutionalization, faster cognitive worsening, and greater caregiver burden). Its occurrence and phenotypic characteristics may be influenced by diverse neurobiological, psychosocial, and environmental determinants. Moreover, it may pose diagnostic challenges in relation to other common causes of behavioral disruptions. Beside these considerations, this phenomenon has so far drawn limited clinical and scientific interest compared to other specific NPS occurring in dementias, as indicated by the lack of commonly agreed definitions, specific screening/assessment tools, and robust estimates on its prevalence. Accordingly, no randomized controlled trial specifically investigating the effectiveness of pharmacological and non-pharmacological strategies in managing this condition among demented patients has been yet conducted. In the present narrative review, we present and discuss available evidence concerning sundowning occurring in people with dementia. A special focus is given to its definitions, pathophysiological determinants, and clinical relevance, as well as to the clinical and therapeutic approaches required for its management in the daily practice. PMID:28083535

  5. Dementia as a cultural metaphor.

    PubMed

    Zeilig, Hannah

    2014-04-01

    This article contributes to debates about the category "dementia," which until recently has been dominated by biomedical models. The perspectives of critical gerontology are pertinent for extending knowledge about dementia and guiding this analysis. These perspectives encourage examination of cultural and historical influences and thus question how societies have constructed and defined dementia. This article queries the stories told about dementia and the language that we use to tell these stories. Central to the article is an analysis of some of the stories about dementia that are contained within and framed by contemporary culture. A number of films, TV documentaries, news reports, theatre, memoirs, novels, and poems that portray some of the experiences associated with dementia are interrogated. These representations are examined as they either perpetrate or challenge stereotypes about living with dementia. Analysis of these representations demonstrates the sociocultural construction of dementia and the extent to which dementia is a diachronic phenomenon. Above all, the article considers (a) the social and political dimensions of dementia, (b) the ways in which the metaphors persistently used to explain dementia shape our consciousness about this condition, and (c) the extent to which dementia is an inherent part of contemporary life.

  6. VA Health Care: Actions Needed to Address Higher-Than-Expected Demand for the Family Caregiver Program

    DTIC Science & Technology

    2014-09-01

    we contacted pointed out that their catchment area covers 147,000 square miles, and some of their caregivers live over 8 hours away, requiring...geographical area . A caregiver whose veteran is rated tier 2 receives the equivalent of 25 hours per week of the wage for a home health aide, and a...location we contacted told us that home visits to remote areas require long driving times, which are challenging to accommodate. Staff at one VAMC

  7. Multi-infarct dementia, subcortical dementia, and hydrocephalus.

    PubMed

    Nadeau, S E

    1991-05-01

    The diagnostic evaluation of dementia is directed toward the identification of treatable causes. It can be facilitated by classification of the dementia into one of four categories: attentional, amnestic, cognitive, and intentional. Intentional dementia reflects dysfunction of frontal lobe systems, components of which include the frontal cortex, basal ganglia, thalamus, limbic structures, and subcortical white matter. Disorders that affect one or more of these components and produce intentional dementia include Binswanger's disease, Parkinson's disease, Huntington's disease, HIV infection, closed head injury, normal pressure hydrocephalus, neoplasms, syphilis, vitamin B12 deficiency, multiple sclerosis, and a number of uncommon degenerative and acquired syndromes. Depression may resemble intentional dementia. Guidelines for diagnosis and management are discussed.

  8. [Behavior and well-being of people with dementia in a social care group. Observation study with dementia care mapping].

    PubMed

    Hochgraeber, Iris

    2013-07-01

    Social care groups for people with dementia areone way to relieve family caregivers and to activate individuals with dementia. This study aimed to describe one social care group and investigate the well-being of the groups members. The research question therefore was: What are people with dementia doing and how do they feel in a social care group? In this descriptive observation study we observed three group sessions in one social care group with five members in North Rhine-Westphalia (Germany) using Dementia Care Mapping (DCM). The results show that there was a special course of action fixed by meals, welcoming and farewell. The behaviour and well-being varied. Leisure like doing handicraft and interaction were depicted as main activities. The well-being was high, if participants had energetic activities and the course of action of the different group members was similar. Interestingly one person was excluded from almost all activities. It is important for staff to know the constellation of the group and to include all visitors.

  9. Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring.

    PubMed

    Totsika, Vasiliki; Hastings, Richard P; Vagenas, Dimitrios

    2016-09-22

    There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.

  10. [Delirium and dementia].

    PubMed

    Marín Carmona, José Manuel

    2008-01-01

    Delirium and dementia are highly prevalent neurocognitive syndromes in the elderly. These syndromes are defined by level of consciousness, clinical onset, and potential reversibility, etc. Frequently, both syndromes coincide in the elderly patient and share many epidemiologic, pathogenic and clinical features, which are reviewed in this article. There is no solid scientific evidence that explains the association between delirium and dementia. The present article proposes a change of paradigm in the diagnostic, preventive and therapeutic approach to delirium in the elderly that recognizes the inherent complexity of this geriatric syndrome and, unlike dichotomic models, explores the complex interrelations between both geriatric syndromes. Delirium is viewed as an important model to investigate cognitive disorders and dementia.

  11. Hypertension and dementia.

    PubMed

    Hanon, Olivier; Seux, Marie Laure; Lenoir, Hermine; Rigaud, Anne Sophie; Forette, Françoise

    2003-11-01

    Hypertension is one of the principal risk factors for cerebrovascular diseases. Several epidemiologic studies have also indicated a positive correlation between cognitive decline or dementia and blood pressure level. Indeed, the results of most longitudinal studies show that cognitive functioning is often inversely proportional to blood pressure values measured 15 or 20 years previously. Cerebral infarcts, lacunae, and white matter changes are implicated in the pathogenesis of vascular dementia, but may also favor the development of Alzheimer's disease. Microcirculation disorders and endothelial dysfunctions are also advanced to explain the deterioration in cognitive functions in hypertensive subjects. Data from recent therapeutic trials open the way to the prevention of dementia (vascular or Alzheimer's type) by antihypertensive treatments and must be confirmed by other studies.

  12. Nutrition in Severe Dementia

    PubMed Central

    Pivi, Glaucia Akiko Kamikado; Bertolucci, Paulo Henrique Ferreira; Schultz, Rodrigo Rizek

    2012-01-01

    An increasing proportion of older adults with Alzheimer's disease or other dementias are now surviving to more advanced stages of the illness. Advanced dementia is associated with feeding problems, including difficulty in swallowing and respiratory diseases. Patients become incompetent to make decisions. As a result, complex situations may arise in which physicians and families decide whether artificial nutrition and hydration (ANH) is likely to be beneficial for the patient. The objective of this paper is to present methods for evaluating the nutritional status of patients with severe dementia as well as measures for the treatment of nutritional disorders, the use of vitamin and mineral supplementation, and indications for ANH and pharmacological therapy. PMID:22645608

  13. All Is Not Lost: Positive Behaviors in Alzheimer’s Disease and Behavioral-Variant Frontotemporal Dementia with Disease Severity

    PubMed Central

    Midorikawa, Akira; Leyton, Cristian E.; Foxe, David; Landin-Romero, Ramon; Hodges, John R.; Piguet, Olivier

    2016-01-01

    Background: Anecdotal evidence indicates that some patients with dementia exhibit novel or increased positive behaviors, such as painting or singing, after the disease onset. Due to the lack of objective measures, however, the frequency and nature of these changes has not been formally investigated. Objective: This study aimed to systematically identify changes in these behaviors in the two most common younger-onset dementia syndromes: Alzheimer’s disease (AD) and behavioral-variant frontotemporal dementia (bvFTD). Methods: Sixty-three caregivers of patients with dementia (32 caregivers of AD patients and 31 caregivers of bvFTD patients) participated in the study. Caregivers rated the presence and frequency of positive and negative behavior changes after the onset of dementia using the Hypersensory and Social/Emotional Scale (HSS) questionnaire, focusing on three domains: sensory processing, cognitive skills, and social/emotional processing. Six composites scores were obtained reflecting these three domains (two composite scores for each domain). Differences across scores and ratios of increased and decreased behaviors were analyzed between AD and bvFTD, at different disease severity levels. Results: After disease onset, significant changes in the sensory processing domain were observed across disease severity levels, particularly in AD. Composite scores of the other domains did not change significantly. Importantly, however, some novel or increased positive behaviors were present in between 10% (Music activities) and 70% (Hypersensitivity) of AD and bvFTD patients, regardless of disease severity. Conclusions: We provide the first systematic investigation of positive behaviors in AD and bvFTD. The newly developed HSS questionnaire is a valid measure to characterize changes and progression of positive behaviors in patients with dementia. PMID:27472884

  14. Tackling indifference--clowning, dementia, and the articulation of a sensitive body.

    PubMed

    Hendriks, Ruud

    2012-01-01

    In this auto-ethnographic study, I focus on a special form of clowning for people at an advanced stage of dementia. The miMakkus clown is presented as a specialist in contact with people with whom communication is no longer possible by the usual (linguistic, cognitive) means. I illustrate how the miMakkus clown tries to reach people with dementia, focusing specifically on the role of the sensitive body as an instrument for attunement. As I demonstrate, in their contact, the clown and the person with dementia are involved in a process of mutual articulation.

  15. Rapidly Progressive Dementia

    PubMed Central

    Geschwind, Michael D.; Shu, Huidy; Haman, Aissa; Sejvar, James J.; Miller, Bruce L.

    2009-01-01

    In contrast with more common dementing conditions that typically develop over years, rapidly progressive dementias can develop subacutely over months, weeks, or even days and be quickly fatal. Because many rapidly progressive dementias are treatable, it is paramount to evaluate and diagnose these patients quickly. This review summarizes recent advances in the understanding of the major categories of RPD and outlines efficient approaches to the diagnosis of the various neurodegenerative, toxic-metabolic, infectious, autoimmune, neoplastic, and other conditions that may progress rapidly. PMID:18668637

  16. Montessori-based dementia care.

    PubMed

    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.

  17. Determinants of job satisfaction in foreign domestic helpers caring for people with dementia in Hong Kong.

    PubMed

    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.

  18. Vision based assistive technology for people with dementia performing activities of daily living (ADLs): an overview

    NASA Astrophysics Data System (ADS)

    As'ari, M. A.; Sheikh, U. U.

    2012-04-01

    The rapid development of intelligent assistive technology for replacing a human caregiver in assisting people with dementia performing activities of daily living (ADLs) promises in the reduction of care cost especially in training and hiring human caregiver. The main problem however, is the various kinds of sensing agents used in such system and is dependent on the intent (types of ADLs) and environment where the activity is performed. In this paper on overview of the potential of computer vision based sensing agent in assistive system and how it can be generalized and be invariant to various kind of ADLs and environment. We find that there exists a gap from the existing vision based human action recognition method in designing such system due to cognitive and physical impairment of people with dementia.

  19. Creativity and dementia: a review.

    PubMed

    Palmiero, Massimiliano; Di Giacomo, Dina; Passafiume, Domenico

    2012-08-01

    In these last years, creativity was found to play an important role for dementia patients in terms of diagnosis and rehabilitation strategies. This led us to explore the relationships between dementia and creativity. At the aim, artistic creativity and divergent thinking are considered both in non-artists and artists affected by different types of dementia. In general, artistic creativity can be expressed in exceptional cases both in Alzheimer's disease and Frontotemporal dementia, whereas divergent thinking decreases in dementia. The creation of paintings or music is anyway important for expressing emotions and well-being. Yet, creativity seems to emerge when the right prefrontal cortex, posterior temporal, and parietal areas are relatively intact, whereas it declines when these areas are damaged. However, enhanced creativity in dementia is not confirmed by controlled studies conducted in non-artists, and whether artists with dementia can show creativity has to be fully addressed. Future research directions are suggested.

  20. COMPARATIVE EFFECTIVENESS OF MCI and DEMENTIA TREATMENTS IN A COMMUNITY-BASED DEMENTIA PRACTICE

    ClinicalTrials.gov

    2016-08-04

    Mild Cognitive Impairment; Dementia; Hypoxia; Hyperhomocysteinemia; Vitamin B 12 Deficiency; Iron Deficiency; Anemia; TBI; Neurodegenerative Disorders; Alzheimer's Disease; Vascular Dementia; Brain Injuries; Tauopathies; Parkinson's Disease; Lewy Body Dementia; Frontotemporal Dementia; TDP-43 Proteinopathies

  1. Treatment for Dementia

    PubMed Central

    Taylor, Jirka; Marjanovic, Sonja; Nolte, Ellen; Pollitt, Alexandra; Rubin, Jennifer

    2016-01-01

    Abstract The past few decades have seen a number of medical breakthroughs that enabled the effective treatment of a range of conditions, transforming them from fatal into manageable ones. Examples include certain cancers and HIV. Conversely, progress on dementia has been limited. There are currently no treatments that will cure or even alter the progressive course of dementia, despite ongoing research investigating new therapies and care options. The UK Department of Health is interested in the potential to learn from other disease areas to better understand the particular social, economic, political, legislative and scientific contexts that have contributed to accelerating progress and breakthroughs in treatment. Such learning could helpfully inform dementia research and innovation efforts, and help identify levers for supportive policy development. This project analysed breakthroughs in the treatment of four selected conditions of ill health and seeks to identify potentially transferable lessons for the dementia context. Using evidence review and key informant interviews we sought to identify the series of “events” that eventually led to a given breakthrough, and the key milestones in the process that have helped improve understanding and potential for treatment. We also aimed to capture the temporal and causal relationships between “notable” events looking at a variety of factors implicated in the breakthrough pathway. The focus of this work was on political, economic, social, scientific and technological, and legal, regulatory and environmental factors. PMID:28083433

  2. Dementia and driving.

    PubMed

    O'Neill, D; Neubauer, K; Boyle, M; Gerrard, J; Surmon, D; Wilcock, G K

    1992-04-01

    Many European countries test cars, but not their drivers, as they age. There is evidence to suggest that human factors are more important than vehicular factors as causes of motor crashes. The elderly also are involved in more accidents per distance travelled than middle-aged drivers. As the UK relies on self-certification of health by drivers over the age of 70 years, we examined the driving practices of patients with dementia attending a Memory Clinic. Nearly one-fifth of 329 patients with documented dementia continued to drive after the onset of dementia, and impaired driving ability was noted in two-thirds of these. Their families experienced great difficulty in persuading patients to stop driving, and had to invoke outside help in many cases. Neuropsychological tests did not help to identify those who drove badly while activity of daily living scores were related to driving ability. These findings suggest that many patients with dementia drive in an unsafe fashion after the onset of the illness. The present system of self-certification of health by the elderly for driver-licensing purposes needs to be reassessed.

  3. Malnutrition and dementia.

    PubMed

    Wilhelm, Karen

    2016-07-13

    What was the nature of the CPD activity and/or practice-related feedback and/or event or experience in your practice? The CPD article outlined the effects dementia may have on a person's ability to eat and drink safely. It discussed assessment tools to identify patients at risk of malnutrition and management strategies to help maintain nutritional intake.

  4. Lewy Body Dementia Diagnosis

    MedlinePlus

    ... as part of their protocols. Participating in research studies is a good way to benefit others with Lewy body dementia. Medications Medications are one of the most controversial subjects in dealing with LBD. A medication that doesn't work for one person may work for another person. ...

  5. Aspirin for vascular dementia

    PubMed Central

    Rands, Gianetta; Orrell, Martin

    2014-01-01

    Background Aspirin is widely prescribed for patients with a diagnosis of vascular dementia. In a survey of UK geriatricians and psychiatrists 80% of patients with clinical diagnoses of vascular dementia were prescribed aspirin. However, a number of queries remain unanswered. Is there convincing evidence that aspirin benefits patients with vascular dementia? Does aspirin affect cognition and behaviour, or improve prognosis? Does the risk of cerebral or gastric haemorrhage outweigh any benefit? Objectives To assess the randomised trial evidence for efficacy and safety of aspirin in the treatment of vascular dementia. Search methods We searched ALOIS: the Cochrane Dementia and Cognitive Improvement Group’s Specialized Register on 12 March 2012 using the terms: aspirin OR “acetylsalicylic acid”. ALOIS contains records of clinical trials identified from monthly searches of a number of major healthcare databases, numerous trial registries and grey literature sources. In addition, relevant websites were searched and some journals were handsearched. Specialists in the field were approached for unpublished material and any publications found were searched for additional references. Selection criteria Randomised controlled trials investigating the effect of aspirin for vascular dementia were eligible for inclusion. Data collection and analysis Retrieved studies were analysed independently by both review authors. Methodology and results were critically appraised and outcomes scanned included cognition, behavioural change, mortality and institutionalisation. Main results No trials were eligible for inclusion in this review. Authors’ conclusions The most recent search for references to relevant research was carried out in March 2012. No trials were found for inclusion in this systematic review. Low-dose aspirin is frequently used as ‘treatment as normal’ in control groups and as a baseline treatment in pharmacological trials. There is still no good evidence that

  6. What is vascular dementia?

    PubMed

    Kurz, A F

    2001-05-01

    Cerebrovascular disease (CVD) and dementia frequently coexist in elderly patients. The question of whether the CVD causes the dementia depends on how 'dementia' is defined. Traditional definitions specified that dementia involved a decline in intellectual ability as a core feature. However, revised definitions have since stipulated two key elements: 1) a global rather than focal neurobehavioural deficit and 2) impairment in activities of daily living (ADL). When applied to CVD, these latter concepts of dementia raise difficulty: Focal cerebrovascular lesions in the cortex generate location-specific neurobehavioural deficits that are part of the dementia syndrome, but, even in combination, do not represent a global intellectual decline. Most cerebrovascular lesions are associated with physical symptoms that make it difficult to evaluate whether cognitive impairments have an independent impact on ADL. The majority of neurobehavioural symptoms in CVD are caused by small-vessel-type subcortical lesions and are dissimilar to those seen in Alzheimer's disease. There are several pathogenetic mechanisms, however, by which large-vessel or small-vessel CVD can cause global cognitive and intellectual impairments, allowing a diagnosis of vascular dementia (VaD): An accumulation of ischaemic lesions in the cortex may produce global intellectual impairment, particularly if they affect important areas of the brain. Single small infarcts, or haemorrhages in strategic subcortical locations, may interfere with specific circuits connecting the prefrontal cortex to the basal ganglia, or with nonspecific thalamocortical projections. This may generate combinations of executive dysfunction, personality change or apathy, which are associated with hypoperfusion and hypometabolism predominantly in frontal cortical areas. Extensive white matter lesions probably affect cognitive function through a loss of axons, producing a functional disconnection of the cortex. This can manifest as

  7. Music Perception in Dementia.

    PubMed

    Golden, Hannah L; Clark, Camilla N; Nicholas, Jennifer M; Cohen, Miriam H; Slattery, Catherine F; Paterson, Ross W; Foulkes, Alexander J M; Schott, Jonathan M; Mummery, Catherine J; Crutch, Sebastian J; Warren, Jason D

    2017-01-01

    Despite much recent interest in music and dementia, music perception has not been widely studied across dementia syndromes using an information processing approach. Here we addressed this issue in a cohort of 30 patients representing major dementia syndromes of typical Alzheimer's disease (AD, n = 16), logopenic aphasia (LPA, an Alzheimer variant syndrome; n = 5), and progressive nonfluent aphasia (PNFA; n = 9) in relation to 19 healthy age-matched individuals. We designed a novel neuropsychological battery to assess perception of musical patterns in the dimensions of pitch and temporal information (requiring detection of notes that deviated from the established pattern based on local or global sequence features) and musical scene analysis (requiring detection of a familiar tune within polyphonic harmony). Performance on these tests was referenced to generic auditory (timbral) deviance detection and recognition of familiar tunes and adjusted for general auditory working memory performance. Relative to healthy controls, patients with AD and LPA had group-level deficits of global pitch (melody contour) processing while patients with PNFA as a group had deficits of local (interval) as well as global pitch processing. There was substantial individual variation within syndromic groups. Taking working memory performance into account, no specific deficits of musical temporal processing, timbre processing, musical scene analysis, or tune recognition were identified. The findings suggest that particular aspects of music perception such as pitch pattern analysis may open a window on the processing of information streams in major dementia syndromes. The potential selectivity of musical deficits for particular dementia syndromes and particular dimensions of processing warrants further systematic investigation.

  8. Music perception in dementia

    PubMed Central

    Nicholas, Jennifer M; Cohen, Miriam H; Slattery, Catherine F; Paterson, Ross W; Foulkes, Alexander J M; Schott, Jonathan M; Mummery, Catherine J; Crutch, Sebastian J; Warren, Jason D

    2017-01-01

    Despite much recent interest in music and dementia, music perception has not been widely studied across dementia syndromes using an information processing approach. Here we addressed this issue in a cohort of 30 patients representing major dementia syndromes of typical Alzheimer’s disease (AD, n=16), logopenic aphasia (LPA, an Alzheimer variant syndrome; n=5) and progressive nonfluent aphasia (PNFA; n=9) in relation to 19 healthy age-matched individuals. We designed a novel neuropsychological battery to assess perception of musical patterns in the dimensions of pitch and temporal information (requiring detection of notes that deviated from the established pattern based on local or global sequence features) and musical scene analysis (requiring detection of a familiar tune within polyphonic harmony). Performance on these tests was referenced to generic auditory (timbral) deviance detection and recognition of familiar tunes and adjusted for general auditory working memory performance. Relative to healthy controls, patients with AD and LPA had group-level deficits of global pitch (melody contour) processing while patients with PNFA as a group had deficits of local (interval) as well as global pitch processing. There was substantial individual variation within syndromic groups. No specific deficits of musical temporal processing, timbre processing, musical scene analysis or tune recognition were identified. The findings suggest that particular aspects of music perception such as pitch pattern analysis may open a window on the processing of information streams in major dementia syndromes. The potential selectivity of musical deficits for particular dementia syndromes and particular dimensions of processing warrants further systematic investigation. PMID:27802226

  9. Dementia with Lewy bodies.

    PubMed

    McKeith, Ian G; Burn, David J; Ballard, Clive G; Collerton, Daniel; Jaros, Evelyn; Morris, Chris M; McLaren, Andrew; Perry, Elaine K; Perry, Robert; Piggott, Margaret A; O'Brien, John T

    2003-01-01

    The objective was to summarize recent findings about the clinical features, diagnosis and investigation of dementia with Lewy (DLB) bodies, together with its neuropathology, neurochemistry and genetics. Dementia with Lewy bodies (DLB) is a primary, neurodegenerative dementia sharing clinical and pathological characteristics with both Parkinson's disease (PD) and Alzheimer's disease (AD). Antiubiquitin immunocytochemical staining, developed in the early 1990s, allowed the frequency and distribution of cortical LBs to be defined. More recently, alpha-synuclein antibodies have revealed extensive neuritic pathology in DLB demonstrating a neurobiological link with other "synucleinopathies" including PD and multiple system atrophy (MSA). The most significant correlates of cognitive failure in DLB appear to be with cortical LB and Lewy neurites (LNs) rather than Alzheimer type pathology. Clinical diagnostic criteria for DLB, published in 1996, have been subjected to several validation studies against autopsy findings. These conclude that although diagnostic specificity is high (range 79- 100%, mean 92%), sensitivity is lower (range 0- 83 %, mean, 49%). Improved methods of case detection are therefore required. Fluctuating impairments in attention, visual recognition and construction are more indicative of DLB than AD. Relative preservation of medial temporal lobe volume on structural MRI and the use of SPECT tracers for regional blood flow and the dopamine transporter are the most reliable current biomarkers for DLB. There are no genetic or CSF tests recommended for the diagnosis of DLB at present. Between 15 and 20% of all elderly demented cases reaching autopsy have DLB, making it the most common cause of degenerative dementia after AD. Exquisite, not infrequently fatal, sensitivity to neuroleptic drugs and encouraging reports of the effects of cholinesterase inhibitors on cognitive, psychiatric and neurological features, mean that an accurate diagnosis of DLB is more

  10. Dementia Friendly, Dementia Capable, and Dementia Positive: Concepts to Prepare for the Future

    PubMed Central

    Lin, Shih-Yin; Lewis, Frances Marcus

    2015-01-01

    With an aging global population, the number of dementia cases is growing exponentially. To address the upcoming dementia crisis, the World Health Organization and Alzheimer’s Disease International (2012) collaborated on an extensive report, Dementia: A Public Health Priority. In the United Kingdom, Prime Minster David Cameron initiated a national challenge on dementia, forming 3 dementia challenge champion groups aimed at improving health and care, creating dementia-friendly communities, and promoting dementia research. In the U.S., President Obama signed the National Alzheimer’s Project Act, which led to the formation of the Advisory Council on Alzheimer’s Research, Care, and Services and the launch of the first National Plan to Address Alzheimer’s Disease. The term “dementia capable” was introduced in the 2012 Recommendations of the Public Members of the Advisory Council and has since been adopted in both the recommendations and annual updates of the national plan. This paper will first compare and contrast government usage of the concepts dementia friendly and dementia capable, along with another valuable concept, dementia positive, that was added after reviewing the literature. Finally, a new vision statement for the U.S.’ national plan will be proposed and recommendations incorporating these 3 concepts in policy, research, and practice will be made. PMID:26035599

  11. Attitudinal & Knowledge Barriers towards Effective Pain Assessment & Management in Dementia: A Narrative Synthesis.

    PubMed

    Chandler, Rebecca C; Zwakhalen, Sandra Mg; Docking, Rachael; Bruneau, Benjamin; Schofield, Patricia

    2016-06-02

    Under-assessment and inadequate treatment of pain is a common problem for older adults, particularly those with dementia. This may be in part attributed to knowledge deficits and negative attitudes among healthcare staff and informal caregivers towards pain, its assessment and its management in dementia. Knowledge and attitudes have a significant predictive relationship with behavior, potentially impacting pain assessment and management practices. Despite this there remains a paucity of research in the area and a lack of clarity about existing knowledge levels and attitudes among dementia caregivers. Therefore, the aims of this review were to: identify what knowledge deficits and attitudinal barriers exist amongst dementia caregivers; and identify the scales available to measure these. A search was carried out in the following electronic databases: Academic Search Premier; CINAHL; Education Research Complete; Humanities International Journals; Psychology and Behavioral Sciences Collection; PsychINFO; PsychArticles; Teacher Reference Center; and MEDLINE. A total of 13 articles met the inclusion criteria. A number of knowledge deficits and negative attitudes were identified, particularly in the use self-reports and pain assessment tools in dementia, and the safety of opioids. Understanding and positive attitudes were demonstrated in some areas, such as non-narcotic pain medications and identifying behavioral pain indicators. Of the 4 scales identified, positive results were found for internal consistency and content validity, however further refinement and testing is necessary. It was concluded attitudinal and knowledge barriers exist which should be addressed given their influence over practice behavior, however, there is a willingness and knowledge base from which progress can build.

  12. Efficacy of musical interventions in dementia: evidence from a randomized controlled trial.

    PubMed

    Narme, Pauline; Clément, Sylvain; Ehrlé, Nathalie; Schiaratura, Loris; Vachez, Sylvie; Courtaigne, Bruno; Munsch, Frédéric; Samson, Séverine

    2014-01-01

    Although musical interventions have recently gained popularity as a non-pharmacological treatment in dementia, there is still insufficient evidence of their effectiveness. To investigate this issue, a single-center randomized controlled trial was conducted with forty-eight patients with Alzheimer's disease or mixed dementia to compare the effects of music versus cooking interventions in the emotional, cognitive, and behavioral domain, as well as on professional caregiver distress. Each intervention lasted four weeks (two one-hour sessions a week). Multi-component evaluations (with blind assessors) were conducted before, during, and after the interventions to assess their short and long-term effects (up to four weeks post interventions). Analyses revealed that both music and cooking interventions led to positive changes in the patients' emotional state and decreased the severity of their behavioral disorders, as well as reduced caregiver distress. However, no benefit on the cognitive status of the patients was seen. While results did not demonstrate a specific benefit of music on any of the considered measures, the present study suggests the efficacy of two pleasant non-pharmacological treatments in patients with moderate to severe dementia. Our findings highlight the potential of such interventions in improving the well-being of patients living in residential care, as well as reducing caregiver distress.

  13. Smart wireless continence management system for persons with dementia.

    PubMed

    Wai, Aung Aung Phyo; Fook, Victor Foo Siang; Jayachandran, Maniyeri; Biswas, Jit; Nugent, Chris; Mulvenna, Maurice; Lee, Jer-En; Kiat, Philp Yap Lian

    2008-10-01

    Incontinence is highly prevalent in the elderly population, especially in nursing home residents with dementia. It is a distressing and costly health problem that affects not only the patients but also the caregivers. Effective continence management is required to provide quality care, and to eliminate high labor costs and annoyances to the caregivers resulting from episodes of incontinence. This paper presents the design, development, and preliminary deployment of a smart wireless continence management system for dementia-impaired elderly or patients in institutional care settings such as nursing homes and hospitals. Specifically, the mote wireless platform was used to support the deployment of potentially large quantities of wetness sensors with wider coverage and with dramatically less complexity and cost. It consists of an intelligent signal relay mechanism so that the residents are free to move about in the nursing home or hospital and allows personalized continence management service. Preliminary results from a trial in a local nursing home are promising and can significantly improve the quality of care for patients.

  14. The singer or the singing: who sings individually to persons with dementia and what are the effects?

    PubMed

    Chatterton, Wendy; Baker, Felicity; Morgan, Kylie

    2010-12-01

    ''Live'' singing to persons with dementia (PWDs) may be an underused but highly accessible resource for their caregivers, regardless of qualifications. A systematic literature review sought to illuminate who sings to PWDs, and with what objectives and effects, to address the question of whether it is the singer or the singing which is effective. The literature revealed that music therapists seek to address cognitive, behavioral, physiological, and social factors through one-to-one singing, whereas other caregivers are more broadly concerned with quality of life, often through facilitating activities of daily living. All included studies concurred that individual singing to PWDs can be effective in a variety of ways, depending on contexts and goals. PWD's perceptions of situations may influence the effectiveness of singing interventions. Music therapists are urged to empower professional caregivers to sing sensitively to PWDs during caregiving activities.

  15. Resistiveness to Care during Assistance with Activities of Daily Living in Non-institutionalized Persons with Dementia: Associations with Informal Caregivers’ Stress and Well-being

    PubMed Central

    Fauth, Elizabeth Braungart; Femia, Elia E.; Zarit, Steven H.

    2015-01-01

    Objectives Behavior problems that co-occur during assistance with Activities of Daily Living (Resistiveness to Care; RTC) are considered challenging, but are mostly studied in institutions with implications for patients and formal caregivers. RTC is related to, but independent from agitation, and detection of RTC may be left out of common assessments of persons with dementia in studies of informal caregiving (e.g. global assessments of dementia behavioral symptoms, standard assessments of ADL function). This study examines how RTC (frequency and caregivers’ stress appraisals of RTC) are related to caregivers’ well-being. Method 234 caregivers of people with dementia reported care receivers’ ADL impairment (eating, bathing, dressing), RTC frequency (of eating, bathing dressing), and their stress appraisals of these behaviors (RTC appraisals). Caregivers also self-reported their role overload, role captivity, and depressive symptoms. Hierarchical linear regression models included independent variables (demographics, ADL impairment, RTC frequency, RTC appraisals) with three separate dependent variables (overload, captivity, depressive symptoms). Results Two-thirds of informal caregivers reported RTC. Care recipients’ ADL impairment was associated with caregiver outcomes, but only before RTC was entered into the models. RTC frequency significantly predicted caregivers’ overload, captivity, and depression. RTC appraisals predicted overload and captivity. Conclusion RTC is common in persons with dementia residing at home, and RTC has more negative association with informal caregivers’ well-being than assistance with ADL. Adding RTC frequency and appraisal items to standard ADL measures may better estimate caregiver needs and risk, and identify modifiable environmental features by assessing behavioral symptoms in context. PMID:26066353

  16. Family Caregivers of Women with Physical Disabilities

    PubMed Central

    Elliott, Timothy R.; Berry, Jack W.; Shewchuk, Richard M.; Oswald, Kimberly D.; Grant, Joan

    2008-01-01

    Cross-sectional, correlational analyses of data from two separate studies were conducted to examine the correlates of adjustment among family caregivers of women with disabilities. Participants included 40 caregivers of women with spinal cord injuries in the first study and 53 caregivers of women with cerebral palsy, traumatic brain injury, and other neuromuscular disabilities in the second study. It was hypothesized that a negative problem-solving style would be associated with greater caregiver distress in both studies, and that caregiver adjustment would be associated with care recipient depression in the second study. As expected, results indicated that a higher negative orientation toward solving problems was associated with caregiver depression and lower well-being. However, in the second study, caregiver characteristics were not associated with care recipient depression. These data indicate that considerable variability exists in caregiver adjustment. Methodological limitations and the implications for research, service, and policy formation are! discussed. PMID:18716670

  17. Taking Care of You: Support for Caregivers

    MedlinePlus

    ... happiness. Be aware of the signs of "caregiver burnout." Caregiver burnout is a true state of exhaustion, both physical ... autopilot, they're not usually quick to recognize burnout in themselves. Other people might notice the symptoms ...

  18. Utilizing a Wristband Sensor to Measure the Stress Level for People with Dementia

    PubMed Central

    Kikhia, Basel; Stavropoulos, Thanos G.; Andreadis, Stelios; Karvonen, Niklas; Kompatsiaris, Ioannis; Sävenstedt, Stefan; Pijl, Marten; Melander, Catharina

    2016-01-01

    Stress is a common problem that affects most people with dementia and their caregivers. Stress symptoms for people with dementia are often measured by answering a checklist of questions by the clinical staff who work closely with the person with the dementia. This process requires a lot of effort with continuous observation of the person with dementia over the long term. This article investigates the effectiveness of using a straightforward method, based on a single wristband sensor to classify events of “Stressed” and “Not stressed” for people with dementia. The presented system calculates the stress level as an integer value from zero to five, providing clinical information of behavioral patterns to the clinical staff. Thirty staff members participated in this experiment, together with six residents suffering from dementia, from two nursing homes. The residents were equipped with the wristband sensor during the day, and the staff were writing observation notes during the experiment to serve as ground truth. Experimental evaluation showed relationships between staff observations and sensor analysis, while stress level thresholds adjusted to each individual can serve different scenarios. PMID:27886155

  19. Working with advanced dementia patients in a day care setting.

    PubMed

    Abramowitz, Leah

    2008-01-01

    Alzheimer's disease and most other causes of dementia are regressive by nature. As such one can expect patients with such types of mental impairment to gradually decline in function and ability to participate in day care activities. This paper attempts to show that with the right kind of orientation, staff can "tune into" the more advanced dementia patients, find the key to their personal needs, desires and remaining abilities and design a program that allows them not only to continue to participate in a social and therapeutic framework, but also to gain some meaningful human contact and quality of life despite their cognitive deterioration.

  20. VERA framework: communicating with people who have dementia.

    PubMed

    Blackhall, Amanda; Hawkes, Dave; Hingley, David; Wood, Steven

    This article presents a communication framework, devised by the authors, that could be used by healthcare professionals who come into contact with people who have dementia. The framework is based on four key concepts: validation, emotion, reassure and activity (VERA). It describes a stage-by-stage process of communication that guides nurses towards providing compassionate and caring responses. The framework was developed in response to students who said they find it useful to have structured guidance on how to interact with people who have dementia. The VERA framework offers a means of interpreting communication and responding appropriately.

  1. Dementia and legal competency.

    PubMed

    Filaković, Pavo; Erić, Anamarija Petek; Mihanović, Mate; Glavina, Trpimir; Molnar, Sven

    2011-06-01

    The legal competency or capability to exercise rights is level of judgment and decision-making ability needed to manage one's own affairs and to sign official documents. With some exceptions, the person entitles this right in age of majority. It is acquired without legal procedures, however the annulment of legal capacity requires a juristic process. This resolution may not be final and could be revoked thorough the procedure of reverting legal capacity - fully or partially. Given the increasing number of persons with dementia, they are often subjects of legal expertise concerning their legal capacity. On the other part, emphasis on the civil rights of mentally ill also demands their maximal protection. Therefore such distinctive issue is approached with particular attention. The approach in determination of legal competency is more focused on gradation of it's particular aspects instead of existing dual concept: legally capable - legally incapable. The main assumption represents how person with dementia is legally capable and should enjoy all the rights, privileges and obligations as other citizens do. The aspects of legal competency for which person with dementia is going to be deprived, due to protection of one's rights and interests, are determined in legal procedure and then passed over to the guardian decided by court. Partial annulment of legal competency is measure applied when there is even one existing aspect of preserved legal capability (pension disposition, salary or pension disposition, ability of concluding contract, making testament, concluding marriage, divorce, choosing whereabouts, independent living, right to vote, right to decide course of treatment ect.). This measure is most often in favour of the patient and rarely for protection of other persons and their interests. Physicians are expected to precisely describe early dementia symptoms which may influence assessment of specific aspects involved in legal capacity (memory loss, impaired task

  2. Factors associated with caregiver burden among caregivers of children with cerebral palsy in Sri Lanka.

    PubMed

    Wijesinghe, Champa J; Cunningham, Natasha; Fonseka, Pushpa; Hewage, Chandanie G; Østbye, Truls

    2015-01-01

    A cross-sectional study was conducted among 375 caregivers of children with cerebral palsy attending a tertiary care setting in Sri Lanka, to identify factors associated with caregiver burden. Caregiver burden was defined as "caregiver's response to various stressors associated with caregiving" and was measured using Caregiver Difficulties Scale (CDS), developed specifically for this purpose. Multivariate linear regression was used to assess associations between sociodemographic, stressor, and coping factors and caregiver burden; and to examine whether coping reduces the effect of stressors on burden. Low income, rural residence, male sex, and number of functional deficits of the disabled child correlated significantly with higher caregiver burden, while spousal support correlated with lower burden. Seeking social support reduced the increased burden associated with greater functional impairments. Psychosocial interventions focused on evaluating and improving social support for caregivers may help families at high risk for caregiver distress, to minimize negative outcomes.

  3. Network stigma towards people living with HIV/AIDS and their caregivers: An egocentric network study.

    PubMed

    Wu, Fei; He, Xin; Guida, Jennifer; Xu, Yongfang; Liu, Hongjie

    2015-10-01

    HIV stigma occurs among peers in social networks. However, the features of social networks that drive HIV stigma are not well understood. The objective of this study is to investigate anticipated HIV stigma within the social networks of people living with HIV/AIDS (PLWHA) (N = 147) and the social networks of PLWHA's caregivers (N = 148). The egocentric social network data were collected in Guangxi, China. More than half of PLWHA (58%) and their caregivers (53%) anticipated HIV stigma from their network peers. Both PLWHA and their caregivers anticipated that spouses or other family members were less likely to stigmatise them, compared to friend peers or other relationships. Married network peers were believed to stigmatise caregivers more than unmarried peers. The association between frequent contacts and anticipated stigma was negative among caregivers. Being in a close relationship with PLWHA or caregivers (e.g., a spouse or other family member) was associated with less anticipated stigma. Lower network density was associated with higher anticipated stigma among PLWHA's alters, but not among caregivers' alters. Findings may shed light on innovative stigma reduction interventions at the social network level and therefore improve HIV/AIDS treatment utilisation.

  4. Pharmacological modulation of cognitive and behavioral symptoms in patients with dementia due to Alzheimer's disease.

    PubMed

    de Oliveira, Fabricio Ferreira; Bertolucci, Paulo Henrique Ferreira; Chen, Elizabeth Suchi; Smith, Marilia de Arruda Cardoso

    2014-01-15

    To evaluate correlations of pharmacological treatment with cognitive and behavioral symptoms in patients with dementia due to Alzheimer's disease with low schooling, subjects were assessed for demographic features, neuropsychiatric symptoms, cognitive decline, functionality, caregiver burden, APOE haplotypes and pharmacological treatment. Among 217 patients, use of cholinesterase inhibitors with or without Memantine was associated with less neuropsychiatric symptoms, while anti-psychotics and/or anti-epileptic drugs were associated with lower instrumental functionality. Anti-psychotics were also associated with more neuropsychiatric symptoms in moderately impaired patients, possibly reflecting the greater need for such treatment when behavioral symptoms are present. Patients receiving more medications were usually younger, obese, married, with higher schooling and more neuropsychiatric symptoms. APOE4+ haplotypes were correlated with earlier dementia onset, but not with pharmacological treatment. Higher caregiver burden was associated with more psychotropic drugs. A trend was found for treatment with cholinesterase inhibitors and Memantine to be associated with longer lengths of dementia for moderately impaired but not for severely impaired patients, regardless of APOE haplotypes, translating into a synergistic effect among such medications for slowing cognitive decline but not for prolonging survival. Further longitudinal studies may be required to assess dose-response relationships regarding treatment with psychotropics for patients with dementia.

  5. Caregivers' Retirement Congruency: A Case for Caregiver Support

    ERIC Educational Resources Information Center

    Humble, Aine M.; Keefe, Janice M.; Auton, Greg M.

    2012-01-01

    Using the concept of "retirement congruency" (RC), which takes into account greater variation in retirement decisions (low, moderate, or high RC) than a dichotomous conceptualization (forced versus chosen), multinomial logistic regression was conducted on a sample of caregivers from the 2002 Canadian General Social Survey who were…

  6. Widening the Generational Circle: Family Caregivers.

    ERIC Educational Resources Information Center

    Smith, Bert Kruger

    This document addresses the dilemma faced by families with an aging or disabled member and the stress associated with the role of family caregiver. Emotions experienced by family caregivers, especially when the caregiver is an adult child caring for an elderly or frail parent, are discussed and feelings of desertion, dependence, and sibling…

  7. Changes in Adult Child Caregiver Networks

    ERIC Educational Resources Information Center

    Szinovacz, Maximiliane E.; Davey, Adam

    2007-01-01

    Purpose: Caregiving research has typically relied on cross-sectional data that focus on the primary caregiver. This approach neglects the dynamic and systemic character of caregiver networks. Our analyses addressed changes in adult child care networks over a 2-year period. Design and Methods: The study relied on pooled data from Waves 1 through 5…

  8. TCARE: Tailored Caregiver Assessment and Referral

    ERIC Educational Resources Information Center

    Montgomery, Rhonda; Kwak, Jung

    2008-01-01

    Care managers, including nurses and social workers, often lack information that would help them more effectively target services to caregivers' needs. Useful information includes the type of services that will be most helpful for caregivers and the best time to start using these services. Generally, caregivers are simply told what services they…

  9. Health Behaviors among Baby Boomer Informal Caregivers

    ERIC Educational Resources Information Center

    Hoffman, Geoffrey J.; Lee, Jihey; Mendez-Luck, Carolyn A.

    2012-01-01

    Purpose of the Study: This study examines health-risk behaviors among "Baby Boomer" caregivers and non-caregivers. Design and Methods: Data from the 2009 California Health Interview Survey of the state's non-institutionalized population provided individual-level, caregiving, and health behavior characteristics for 5,688 informal…

  10. Medically Complex Home Care and Caregiver Strain

    ERIC Educational Resources Information Center

    Moorman, Sara M.; Macdonald, Cameron

    2013-01-01

    Purpose of the study: To examine (a) whether the content of caregiving tasks (i.e., nursing vs. personal care) contributes to variation in caregivers' strain and (b) whether the level of complexity of nursing tasks contributes to variation in strain among caregivers providing help with such tasks. Design and methods: The data came from the Cash…

  11. The Effects of Caregiving on the Family.

    ERIC Educational Resources Information Center

    Bailey, Eric J.; Young, Rosalie F.

    The topic of caregiving was investigated with respect to the burden experienced by primary caregivers of older persons who had recently suffered a myocardial infarction. Structured interviews were completed with 104 primary care providers who were part of a larger National Institute on Aging funded survey. The caregivers were of both sexes and…

  12. Caregiver Health and Safety, Beginnings Workshop.

    ERIC Educational Resources Information Center

    Aronson, Susan S.; Rafanello, Donna; Wortman, Alicia M.; Buffin, Lilli-ann; Albrecht, Kay

    2001-01-01

    Presents five articles on health and safety of caregivers: (1) "Taking Care of Caregivers: Wellness for Every Body" (Aronson); (2) "Caregiver Mental Health" (Aronson); (3) "Show and Tell: Modeling Healthy Behaviors and Attitudes" (Rafanello); (4) "Preventing Work-Related Musculoskeletal Injuries" (Wortman);…

  13. Family Caregiver Identity: A Literature Review

    ERIC Educational Resources Information Center

    Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael

    2015-01-01

    Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…

  14. State Dementia Plans and the Alzheimer's Disease Movement: Framing Diagnosis, Prognosis, and Motivation.

    PubMed

    Arbogast, Charlotte E; Welleford, E Ayn; Netting, F Ellen

    2015-08-28

    An interpretive analysis of 38 state dementia plans compares similarities and differences in diagnostic framing (problem identification/trends/issues), prognosis framing (addressing the problem), and motivational framing (calls for action) across plans. In framing diagnosis, only 6 plans used dementia alone in their titles. In framing prognosis and the subsequent call to action, state plans were consistent in their dire prognostications about the progressive and fatal consequences of the disease with a primary focus on the cost. Motivational language mirrored that of the Alzheimer's Disease (AD) Movement, from raising awareness to using inflammatory words to incite action. The language used set up the frame for clinical interventions that may not distinguish between types of dementia and could undercut the provision of person-centered care, shifts the victimization focus from persons with AD to caregivers and ultimately the state, and may subintentionally reflect cultural biases.

  15. The Peaceful Mind manual: a protocol for treating anxiety in persons with dementia.

    PubMed

    Paukert, Amber L; Kraus-Schuman, Cynthia; Wilson, Nancy; Snow, A Lynn; Calleo, Jessica; Kunik, Mark E; Stanley, Melinda A

    2013-09-01

    Anxiety disorders are highly prevalent among individuals with dementia and have a significant negative impact on their lives. Peaceful Mind is a form of cognitive-behavioral therapy for anxiety in persons with dementia. The Peaceful Mind manual was developed, piloted, and modified over 2 years. In an open trial and a small randomized, controlled trial, it decreased anxiety and caregiver distress. The treatment meets the unique needs of individuals with dementia by emphasizing behavioral rather than cognitive interventions, slowing the pace, limiting the material to be learned, increasing repetition and practice, using cues to stimulate memory, including a friend or family member in treatment as a coach, and providing sessions in the home. The manual presented here includes modules that teach specific skills, including awareness, breathing, calming self-statements, increasing activity, and sleep management, as well as general suggestions for treatment delivery.

  16. Creating an Ethnodrama to Catalyze Dialogue in Home-Based Dementia Care.

    PubMed

    Speechley, Mark; DeForge, Ryan T; Ward-Griffin, Catherine; Marlatt, Nicole M; Gutmanis, Iris

    2015-11-01

    This article describes the development of a theater script derived from a critical ethnographic study that followed people living with dementia--and their family and professional caregivers--over an 18-month period. Analysis of the ethnographic data yielded four themes that characterized home-based dementia care relationships: managing care resources, making care decisions, evaluating care practices, and reifying care norms. The research team expanded to include a colleague with playwright experience, who used these themes to write a script. A theater director was included to cast and direct the play, and finally, a videography company filmed the actors on a realistic set. To contribute to the qualitative health research and the research-based theater knowledge translation literatures, this article describes and explains the creative decisions taken as part of our effort to disseminate research focused on home-based dementia care in a way that catalyzes and fosters critical (actionable) dialogue.

  17. Music-assisted bathing: making shower time easier for people with dementia.

    PubMed

    Ray, Kendra D; Fitzsimmons, Suzanne

    2014-02-01

    It is estimated that 90% of nursing home residents need assistance with bathing. The purpose of this article is to describe a music-assisted care technique that can be used by caregivers when bathing nursing home residents with dementia. Research suggests that music has many therapeutic benefits for people with dementia. Using music to soothe anxiety can be an effective intervention to assist with lessening of agitation during activities of daily living, especially bathing. This article will provide nursing and direct care staff tools to successfully conduct the music-assisted bathing protocol. Consideration for choosing appropriate music for bathing, the creation of individualized personalized playlists, and acknowledgement of desired outcomes are presented. Incorporating music-assisted bathing may address neuropsychiatric symptoms of dementia by lessening agitation and improving mood, which in turn can increase job satisfaction.

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

    PubMed Central

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

    2013-01-01

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

  19. Building capacity for dementia care in Latin America and the Caribbean

    PubMed Central

    Gonzalez, Francisco J.; Gaona, Ciro; Quintero, Marialcira; Chavez, Carlos A.; Selga, Joyce; Maestre, Gladys E.

    2015-01-01

    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

  20. A review of interprofessional dissemination and education interventions for recognizing and managing dementia.

    PubMed

    Brody, Abraham A; Galvin, James E

    2013-01-01

    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 interprofessional teams. This systematic review examined 4,023 abstracts, finding 18 articles 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. Although 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.