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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. Helping Dementia Caregivers Through Technology.

    PubMed

    Fowler, Christianne Nesbitt; Haney, Tina; Lemaster, Margaret

    2016-04-01

    It is estimated there are between 43.5 and 65.7 million caregivers in the United States who provide unpaid care for older adults. Although the number of informal caregivers is expected to continue to increase, few programs have been established in home healthcare agencies to support these caregivers. This article describes a project that used a unique Web site to connect caregivers of people with dementia in a geographic region with an interprofessional group of healthcare providers and caregiver peers. Virtual Healthcare Neighborhood (VHN) was developed and maintained by an interprofessional group of healthcare providers from nursing, physical therapy, clinical counseling, and dental hygiene. The VHN provided weekly information on topics relevant to caring for a loved one with dementia at home as well as Question and Answer and Social Support Blogging sections for use by participants. This project was viewed as a positive and helpful method to provide support for caregivers of homebound older adults that could be easily replicated by home healthcare agencies. PMID:27023296

  3. Resilience and transitions from dementia caregiving.

    PubMed

    Gaugler, Joseph E; Kane, Robert L; Newcomer, Robert

    2007-01-01

    Longitudinal studies have documented how dementia caregivers adapt to their role. Less is known about how resilience (defined as lower or higher perceived burden in the face of frequent care demands) affects key dementia caregiving outcomes. The present study utilized data from 1,979 dementia caregivers over a 3-year period to ascertain whether resilience influences transitions from dementia caregiving, such as institutionalization, care recipient death, or loss to follow-up. Multinomial logistic regression models revealed that high baseline resilience (low burden, high care demands) was associated with less frequent institutionalization and loss to follow-up as well as more frequent care recipient mortality. The findings suggest the need for researchers to capture the heterogeneity of caregiver resilience when examining the longitudinal implications of informal long-term care and delivering clinical interventions. PMID:17284556

  4. Caregiving and Dementia: Predicting Negative and Positive Outcomes for Caregivers.

    ERIC Educational Resources Information Center

    Gold, Dolores Pushkar; And Others

    1995-01-01

    Interviewed a sample of 118 caregivers maintaining relatives with dementia at home, who completed questionnaires at initial and follow-up assessment 6 months later. All dependents received a cognitive assessment. Results of data analysis supported a model of caregiving in which negative outcomes of burden and impaired health reduced positive…

  5. The caregiving experience among Hispanic caregivers of dementia patients.

    PubMed

    Mier, Nelda

    2007-01-01

    This research reviewed studies that investigated factors influencing the caregiving experience among informal Hispanic caregivers of dementia patients. This review identified 24 journal articles published between 1985 and 2003. Variables studied were depression and social support. In addition, methodological issues were detected such as sampling bias and multiple measurements. This review concluded that there is a need for an extensive, in depth research of the caregiving experience among Hispanics and further research needs are discussed. PMID:19172968

  6. 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

  7. Dementia, Caregiving, and Controlling Frustration

    MedlinePlus

    ... for you. Behaviors often associated with dementia, like wandering or asking questions repeatedly, can be frustrating for ... or tasks you need help with. Keep in mind that people feel useful and gratified when they ...

  8. Experiences and Learning Needs of African American Family Dementia Caregivers.

    PubMed

    Samson, Zoe Blake; Parker, Monica; Dye, Clinton; Hepburn, Kenneth

    2016-09-01

    Dementia family caregivers display significant rates of psychological and physical symptoms. African Americans (AAs) are disproportionately affected by dementia. African American caregivers display unique patterns of symptomology and responses to interventions designed to promote caregiver well-being. This study analyzed qualitative focus group data from 32 AA caregivers to explore how issues of race and culture may be incorporated into a culturally sensitive intervention for AA dementia family caregivers. Caregivers were asked scripted questions about their caregiving experiences and to suggest alterations to an existing psychoeducation program. Analysis revealed 4 key themes: the tradition of family care, caregiving and caregiving issues, culturally appropriate care, and navigating without a map. Suggestions for an educational program included a focus on developing caregiver skills and knowledge for caregiving, promotion of self-care, and reflection on the AA family and community as resources for care. PMID:26953236

  9. Improving caregivers' well-being by using technology to manage nighttime activity in persons with dementia.

    PubMed

    Spring, Heather J; Rowe, Meredeth A; Kelly, Annette

    2009-01-01

    This article reports the qualitative arm of a mixed-methods study designed to test an in-home nighttime monitoring system (NMS) that tracks the nighttime activity of persons with dementia. Fourteen caregiver interviews were analyzed using grounded theory/full conceptual description methods to determine the issues associated with providing care at night and to explore the benefits of using the NMS. Caregivers not using the NMS experienced sleep disruption, overwhelming worry, and loss of personal space, leading to decreased energy and changes in mood. When the NMS was used, caregivers reported improved "peace of mind." The fear and uncertainty associated with worry was alleviated by reliable alerts regarding the whereabouts of the person with dementia. Some caregivers were able to better balance needs for personal space with needs to remain in contact with the person with dementia. Generally, caregivers reported improved quality of sleep, although some caregivers reported more awakenings due to the system alerts. PMID:20077992

  10. 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)…

  11. Baby boomer caregiver and dementia caregiving: findings from the National Study of Caregiving

    PubMed Central

    Moon, Heehyul; Dilworth-Anderson, Peggye

    2015-01-01

    Background: previous studies have well documented the characteristics of baby boomers but less is known about the experiences of boomer caregivers (CGs) of people with dementia. Objective: the purpose of this study was to compare the characteristics of boomer CGs of people with dementia with those of boomer CGs for people without dementia and to ascertain factors associated with outcomes. Design: we selected baby boomer CGs from the National Study of Caregiving (NSOC) with 650 primary boomer CGs (138 CGs of people with dementia and 512 CGs of people without dementia). Methods: the Stress Process Model (SPM) was used to examine the effects of resources (the use of paid help and informal support) and stressors (primary: level of CG care activities and interrupted sleep; secondary: strain of caregiving on work, other care and social activities) on CGs' down, depressed or hopeless feelings and self-perceived general health. T-tests and chi-square tests were used to compare SPM domain differences and ordinary least-square multiple regression analysis was used to investigate predictors of CGs' outcomes. Results: high blood pressure and arthritis were the most prevalent chronic diseases in both groups. Boomer CGs of people with dementia reported providing more help with daily activities, higher level of caregiving and social activity conflict, experiencing more interrupted sleep and more down, depressed or hopeless feelings than CGs of people without dementia. Different factors predicted boomer CGs' outcomes. Conclusion: the current results yield important information about the considerable differences between two baby boomer CG groups within the caregiving experiences. The findings highlight the need to provide tailored interventions to boomer CGs to help them cope with caregiving stress to improve their physical and mental health. PMID:25359299

  12. Grief experiences of 3 caregiving wives of veterans with dementia.

    PubMed

    Ford, James L; Linde, Brittany D; Gigliotti, Christina; Kim, Kye Y

    2013-03-01

    Three wives share their experiences of caregiving for husbands with dementia. The 3 husbands, aged 51, 71, and 84, developed dementia following years of devoted military service. To present lived experiences of caregiving wives', meanings attributed to caregiving are investigated, variations in caregiving and grieving experiences are explored, and therapeutic implications are offered. Through case study approach and with issues of caregiver grief considered, we introduce life course and ambiguous loss theoretical perspectives. Emergent qualitative themes and quantitative inventory ratings indicate significant differences in caregiver grief response depend on care-recipient age. Practice implications and directions for future care recipient, age-related research are presented. PMID:22611236

  13. Characteristics of Depressed Caregivers of Veterans With Dementia.

    PubMed

    Bejjani, Carla; Snow, A Lynn; Judge, Katherine S; Bass, David M; Morgan, Robert O; Wilson, Nancy; Walder, Annette; Looman, Wendy J; McCarthy, Catherine; Kunik, Mark E

    2015-11-01

    This study examined the characteristics of caregivers and persons with dementia (PWD) to determine their association with caregiver depression. Participants included 508 PWD (veterans) and 486 caregivers from Boston, Houston, Providence, Beaumont (Texas), and Oklahoma City, identified from diagnoses from medical records and recruited from February 2007 to July 2009, for a larger study evaluating Partners in Dementia Care, a care-coordination intervention. Characteristics evaluated for PWD included activities of daily living, instrumental activities of daily living, cognitive impairment, and disruptive behavior. Caregiver characteristics evaluated included caregiver unmet needs, support-service use, and number of informal helpers. Caregiver depression was measured using the Iowa form 11-item Center for Epidemiologic Studies Depression Scale. Depressed caregivers reported significantly more unmet needs than the nondepressed caregivers. Depressed caregivers also reported a high frequency of disruptive behavior in their PWD. Caregiver perceptions of unmet needs may be an important target for intervention. PMID:23070578

  14. THE HETEROGENEOUS COURSE OF DEPRESSIVE SYMPTOMS FOR THE DEMENTIA CAREGIVER

    PubMed Central

    Ornstein, Katherine; Gaugler, Joseph E.; Zahodne, Laura; Stern, Yaakov

    2014-01-01

    Caregiving may be burdensome to caregivers, negatively affecting health and impacting decisions to institutionalize patients. It is unclear how caregiver depression changes over longer periods or whether heterogeneous trajectories for caregivers are apparent. The goals of this article are to characterize the course of depressive symptoms among caregivers over time and to examine the impact of baseline patient and caregiver characteristics on these trajectories. Patients with dementia and their caregivers were followed every 6 months for up to 6 years or until death (n = 133). Growth mixture modeling identified trajectories of caregiver depression over time. Most caregivers had stable trajectories of symptoms, with a smaller subset showing evidence of wear-and-tear. Patient clinical characteristics had no impact on symptom course for caregivers. Future work should utilize a longitudinal perspective and consider that there may be heterogeneous trajectories for caregivers. Those caregivers who follow a wear-and-tear trajectory may require targeted interventions to improve outcomes. PMID:24956922

  15. The dementia caregiver--a primary care approach.

    PubMed

    Dang, Stuti; Badiye, Amit; Kelkar, Geetanjali

    2008-12-01

    Caring for loved ones with dementia is challenging and stressful for family members who have to provide the home care. The responsibility takes a huge physical, emotional, and financial toll on the caregivers, which is known as caregiver burden. The survival and quality of life of the dementia patient have been shown to be related to the well-being of the caregiver. An overwhelmed caregiver can result in premature institutionalization and increased health-care utilization, by both the patients and the caregivers. The physician should periodically assess caregivers for the level of perceived burden, presence of depression and anxiety, social support, behavioral problems in the care recipient, and coping strategies and help the patient and caregiver with advance care planning. Strategies that meld support, education, and practical counseling about common caregiving stresses and community resources seem to mitigate caregiver burden and depression. PMID:19005434

  16. Sleep in Persons with Frontotemporal Dementia and Their Family Caregivers

    PubMed Central

    Merrilees, Jennifer; Hubbard, Erin; Mastick, Judy; Miller, Bruce L.; Dowling, Glenna A.

    2014-01-01

    Background Dementia is associated with disruptions in sleep and sleep quality for patients and their family caregivers. Little is known about the impact of frontotemporal dementia (FTD) on sleep. Objective The purpose of this study was to characterize sleep in patients with frontotemporal dementia and their family caregivers. Methods Twenty-two patient-caregiver dyads were enrolled: Thirteen behavioral variant FTD (bvFTD) and nine semantic dementia (SD). Sleep and sleep quality data were collected for two weeks using diaries and Actiwatches. Results Patients with bvFTD and SD spent more time in bed at night compared to their caregivers. Nighttime behaviors were reported more frequently by caregivers for the bvFTD patients and strongly correlated with caregiver distress. Actigraphy data demonstrated normal sleep efficiency and timing of the nighttime sleep period for both patients and their caregivers. Caregivers of patients with bvFTD reported poorer sleep quality compared to the SD caregivers. A greater number of bvFTD caregivers compared to SD reported negative aspects of sleep quality for themselves and used sleep medications more frequently. Conclusion The clinical manifestations of bvFTD appear to be associated with different and more distressing impacts on the caregiver sleep quality than SD. PMID:24589648

  17. Coping with cognitive impairment and dementia: Rural caregivers' perspectives.

    PubMed

    Branger, Camille; Burton, Rachel; O'Connell, Megan E; Stewart, Norma; Morgan, Debra

    2016-07-01

    Caregiving in a rural context is unique, but the experience of rural caregivers is understudied. This paper describes how rural caregivers cope with caring for a loved one diagnosed with mild cognitive impairment or dementia using qualitative description to generate a low-inference summary of a response to an open-ended question. This approach allowed these rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress. Analyses of coping revealed use of social support, engaging in relaxing and physical activity, and cognitive reframing. In addition, caregivers reported strong faith and religiosity, and to a lesser frequency behavioral changes, checking in with the person with dementia via telephone, and joint activity. Predominantly, these methods reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role. PMID:24951255

  18. Elevated hair cortisol levels in chronically stressed dementia caregivers.

    PubMed

    Stalder, Tobias; Tietze, Antje; Steudte, Susann; Alexander, Nina; Dettenborn, Lucia; Kirschbaum, Clemens

    2014-09-01

    Hair cortisol concentrations (HCC) are assumed to reflect integrated long-term cortisol levels and have been proposed as a promising endocrine marker of chronic psychological stress. The current study examined HCC in relation to caregiving burden, a well-established naturalistic model of chronic stress in humans. HCC and relevant psychosocial data were examined in 20 caregivers of relatives with dementia and 20 non-caregiver controls matched for age and sex. Results revealed elevated HCC in dementia caregivers compared to non-caregiver controls (F(1,38)=4.4, p=.04, ηp2=.10). Further, within caregivers, a trend for a positive association of HCC with self-reported caregiving burden (r=.43, p=.058) and a positive association with depressiveness (r=.48, p=.045) were observed. No other associations between HCC and subjective measures were seen. These findings concur with the notion that HCC sensitively capture endocrine aberrations in stress-exposed groups. PMID:25001953

  19. Religious and Spiritual Dimensions of the Vietnamese Dementia Caregiving Experience.

    PubMed

    Hinton, Ladson; Tran, Jane Nhauyen; Tran, Cindy; Hinton, Devon

    2008-01-01

    This paper focuses on the role of religion and spirituality in dementia caregiving among Vietnamese refugee families. In-depth qualitative interviews were conducted with nine Vietnamese caregivers of persons with dementia, then tape-recorded, transcribed, and analyzed for emergent themes. Caregivers related their spirituality/religion to three aspects of caregiving: (1) their own suffering, (2) their motivations for providing care, and (3) their understanding of the nature of the illness. Key terms or idioms were used to articulate spiritual/religious dimensions of the caregivers' experience, which included sacrifice, compassion, karma, blessings, grace and peace of mind. In their narratives, the caregivers often combined multiple strands of different religions and/or spiritualities: Animism, Buddhism, Taoism, Confucianism and Catholicism. Case studies are presented to illustrate the relationship between religion/spirituality and the domains of caregiving. These findings have relevance for psychotherapeutic interventions with ethnically diverse populations. PMID:20930949

  20. North Dakota assistance program for dementia caregivers lowered utilization, produced savings, and increased empowerment.

    PubMed

    Klug, Marilyn G; Halaas, Gwen Wagstrom; Peterson, Mandi-Leigh

    2014-04-01

    North Dakota's state-funded Dementia Care Services Program provides individualized assistance to caregivers of persons with dementia. Caregivers can contact program representatives at any time and may continue to contact them throughout the years they are caring for the person with dementia. During the program's first forty-two months of operation (January 2010 to June 2013), care consultants assisted 1,750 caregivers, primarily family members, of 951 persons with dementia. In survey responses and other self-reported data, the unpaid caregivers credited the assistance program with helping them feel more empowered, consider their charges less likely to be placed in long-term care, and use less potentially avoidable medical services such as hospitalizations and 911 calls. The program's estimated potential savings were $39.2 million from delayed long-term care placement and $0.8 million from reduced use of medical services, and its two-year costs were $1.2 million. The program's success with its rural service population, for which travel tends to be difficult and resources limited, provides a model for others to adapt. It also encourages further research on impacts of individualized support programs on persons with dementia and their caregivers. PMID:24711321

  1. Religious and Spiritual Dimensions of the Vietnamese Dementia Caregiving Experience

    PubMed Central

    Hinton, Ladson; Tran, Jane NhaUyen; Tran, Cindy; Hinton, Devon

    2010-01-01

    This paper focuses on the role of religion and spirituality in dementia caregiving among Vietnamese refugee families. In-depth qualitative interviews were conducted with nine Vietnamese caregivers of persons with dementia, then tape-recorded, transcribed, and analyzed for emergent themes. Caregivers related their spirituality/religion to three aspects of caregiving: (1) their own suffering, (2) their motivations for providing care, and (3) their understanding of the nature of the illness. Key terms or idioms were used to articulate spiritual/religious dimensions of the caregivers’ experience, which included sacrifice, compassion, karma, blessings, grace and peace of mind. In their narratives, the caregivers often combined multiple strands of different religions and/or spiritualities: Animism, Buddhism, Taoism, Confucianism and Catholicism. Case studies are presented to illustrate the relationship between religion/spirituality and the domains of caregiving. These findings have relevance for psychotherapeutic interventions with ethnically diverse populations. PMID:20930949

  2. Caregivers' experiences seeking hospice care for loved ones with dementia.

    PubMed

    Lewis, Laura Foran

    2014-09-01

    As the prevalence of dementia continues to grow, informal caregivers face unique challenges as they approach the end of life, and access to support and palliative care is often limited. I used a phenomenological approach to explore the experiences of caregivers actively seeking formal end-of-life care, in particular hospice care, for a loved one with dementia. In-depth interviews with 11 caregivers about 14 patients revealed five themes, including: setting the stage for heartbreak, reaching the boiling point, getting through the front lines, settling for less, and welcoming death. Nurses must recognize the complex needs of caregivers, educate caregivers on the disease process, and adjust to palliative goals sooner to meet the needs of caregivers. Prevalence of these issues must be further examined through quantitative study to evaluate the need to reconsider current hospice eligibility criteria based on prognosis. PMID:25079503

  3. 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…

  4. 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…

  5. 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…

  6. 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…

  7. 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

  8. 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

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

    PubMed Central

    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. PMID:25031635

  10. 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…

  11. 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

  12. 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…

  13. 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

  14. 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

  15. 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…

  16. Personality and Coping among Caregivers of Spouses with Dementia.

    ERIC Educational Resources Information Center

    Hooker, Karen; And Others

    1994-01-01

    Examined personality factors and coping strategies among 50 spouse caregivers of patients diagnosed with Alzheimer's disease or related dementia. Results showed that personality traits explained 60% of variance in emotion-focused coping, 30% of variance in problem-focused coping, and 15% of variance associated with social support coping.…

  17. The Impact of Dementia on Family Caregivers: What Is Research Teaching Us?

    PubMed

    Merrilees, Jennifer

    2016-10-01

    Dementia family caregiving has been the focus of research for decades. Much has been learned about the negative impact of caregiving as well as characteristics that may be protective. This paper explores themes in caregiving pertinent to clinicians and researchers working with dementia family caregivers: the psychological, subjective, and physical outcomes of caregiving, ways in which dementia alters relationships between the patient and caregiver, and strategies for improving outcomes for caregivers. Suggestions for next steps in research and clinical care are made. PMID:27541750

  18. 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

  19. Caregiver Burden and Quality of Life of Key Caregivers of Patients with Dementia

    PubMed Central

    Srivastava, Garima; Tripathi, Rakesh Kumar; Tiwari, Sarvada Chandra; Singh, Bhupinder; Tripathi, Shailendra Mohan

    2016-01-01

    Background: Dementia is the most devastating cognitive disorder of the elderly and needs extra attention to care. Therefore, this study was conducted to identify the caregiver burden of dementia key caregivers and their Quality of Life (QOL). Materials and Methods: Sample consisted of purposively selected 24 dementia key caregivers fulfilling the inclusion criteria from the in-patient of the Department of Geriatric Mental Health, King George's Medical University, Lucknow, Uttar Pradesh, India. Zarit Burden Interview and World Health Organization QOL-BREF were administered. Mean, standard deviation, t-test, Chi-square with Yate's correction were used to analyze the data. Results: All key caregivers felt mild to moderate level of burden. Gender-wise significant difference was found on burden area of expectation (P < 0.05). Mean scores on physical, psychological, social relationship, and environmental QOL were found to be on lower side. A negative correlation was found between burden and QOL. Conclusion: Professional help and supportive psychotherapy can be provided to the key caregivers of dementia patients to reduce their burden, strengthen the coping skill and thus improve their QOL. PMID:27114625

  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. Characteristics and mental health of Hispanic dementia caregivers in New York City

    PubMed Central

    Luchsinger, José Alejandro; Tipiani, Dante; Torres-Patiño, Gabriela; Silver, Stephanie; Eimicke, Joseph P.; Ramirez, Mildred; Teresi, Jeanne; Mittelman, Mary

    2015-01-01

    Background Dementia prevalence and related caregiving burden are increasing, particularly among Hispanics. We studied the characteristics and mental health of Hispanic caregivers in New York City. Methods We recruited 139 Hispanic family caregivers. We collected data on socio-demographic characteristics and predictors of caregiver burden, measured with the Zarit Caregiver Burden Scale, and depressive symptoms, measured with the Geriatric Depression Scale. Results The mean age was 59.3 ± 10.4 years. The majority of caregivers were daughters and earned less than $30,000 a year. In multivariate analyses with linear regression, lower satisfaction with social networks was associated with higher caregiver burden and a greater number of depressive symptoms. Higher dementia severity was associated with higher caregiver burden, while higher caregiver comorbidities were associated with higher depressive symptoms. Conclusions Caregiver comorbidities and satisfaction with social support may be targets for intervention that could improve caregiver burden and depressive symptoms among Hispanic caregivers. PMID:25635108

  3. Differences between family caregivers and people with dementia in recognizing the difficulties encountered in the lives of people with dementia.

    PubMed

    Miyamura, Toshihiro

    2016-01-01

    Objectives Dementia brings new difficulties in the lives of people with this disorder. It is important that family caregivers accurately recognize these difficulties to help their family members live fulfilling lives. Based on information gathered from people with dementia, family caregivers, and nurses providing medical care to this population, this study compared the differences in perspectives related to the difficulties associated with dementia between the family member with dementia and the family caregiver.Methods The primary participants in this investigation were 106 people with dementia and their family caregivers. Participants with dementia were 65 years and older who were receiving home care in Tokyo. Participants were interviewed about their difficulties while family caregivers completed a questionnaire with basic information regarding people with dementia. Additionally, the nurse providing medical care to the person with dementia completed a questionnaire about the medical care. In this study, difficulties in the lives of people with dementia was defined as impediments in life due to dementia. Difficulties were classified according to 12 symptoms based on responses that appeared frequently in the interviews. The 12 symptoms were pain, hallucinations/delusions, aggressive behavior, memory loss, disorientation, communication impairment, anxiety/confusion, toileting problems, gait disturbance, dietary deficiency, sleep disorder, and social withdrawal. Additional information was gathered and analyzed that included diagnosis and severity of dementia, need for long-term care, core symptoms of dementia, behavioral and psychological symptoms of dementia (BPSD), and delirium.Results The family caregiver's perspective about the difficulties encountered in the life of their family member with dementia was often different from the perspective of the associated family member. No family caregivers recognized that pain was a difficulty, and there were only a

  4. Living With Dementia: An Exploratory Study of Caregiving in a Chinese Family Context.

    PubMed

    Wong, Oi Ling; Kwong, Ping Sum; Ho, Candis Ka Yan; Chow, Susanna Miu Yee; Kwok, Timothy; Wong, Bel; Ho, Vennus; Lau, Andrew; Ho, Florence

    2015-01-01

    This qualitative study explored themes that described families taking care of elderly relatives with dementia in Chinese society. Ten families were invited for two in-depth family interviews involving spousal caregivers, child caregivers, and care recipients. Five themes resulted: positive affection as coping strategies, power and control in the caregiving relationship, adult children's involvement in caregiving, sibling rivalry, and intergenerational conflicts. The ways these themes functioned and helped in dementia care, the research implications, and limitations are discussed. PMID:26399493

  5. The impact of early dementia diagnosis and intervention on informal caregivers.

    PubMed

    de Vugt, Marjolein E; Verhey, Frans R J

    2013-11-01

    In the absence of disease modifying therapies for dementia, the question rises what the benefits are of an early dementia diagnosis for patients and their caregivers. This paper reviews the caregiver perspective in dementia and addresses the question what the consequences are of promoting earlier dementia diagnosis. An early diagnosis offers caregivers the opportunity to advance the process of adaptation to the caregiver role. Caregivers that are better able to adapt to the changes that characterize dementia, feel more competent to care and experience less psychological problems. However, drawbacks of an early diagnosis may outweigh the benefits if people are left with a diagnosis but little support. There is convincing evidence that multicomponent caregiver interventions in the mild to moderate dementia stages are effective to improve caregiver well-being and delay institutionalization. However, there still exist a gap between the improved possibilities to diagnose people in the predementia stage versus the scarce knowledge on intervention effects in this very early stage. This stresses the urgent need for more research on early caregiver interventions that enhance role adaptation and that include long-term follow-up and cost-effectiveness evaluation. Early interventions may help caregivers in anticipating and accepting the future care role and transitions, with the increased possibility that caregivers can still involve the patient in the decision making process. As levels of stress and burden are still low in the predementia stage it provides excellent opportunities to empower the resources of caregivers. PMID:23689068

  6. 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. PMID:26705379

  7. Sleep Disturbances and Predictive Factors in Caregivers of Patients with Mild Cognitive Impairment and Dementia

    PubMed Central

    Lee, Dongwhane; Heo, Sung Hyuk; Yoon, Sung-Sang; Chang, Dae-Il; Lee, Sangeui; Rhee, Hak-Young; Ku, Bon D.

    2014-01-01

    Background and Purpose We examined the characteristics of sleep disturbances and sleep patterns in the caregivers of patients with amnestic mild cognitive impairment (aMCI) and dementia. Methods We prospectively studied 132 patients (60 with aMCI and 72 with dementia) and their caregivers, and 52 noncaregiver controls. All caregivers and controls completed several sleep questionnaires, including the Pittsburgh Sleep Quality Index (PSQI). The patients were administered neuropsychological tests and the neuropsychiatric inventory to evaluate their behavioral and neuropsychiatric symptoms of dementia (BPSD). Results The PSQI global score was 6.25±3.88 (mean±SD) for the dementia caregivers and 5.47±3.53 for the aMCI caregivers. The Insomnia Severity Index (ISI) and short form of the Geriatric Depression Scale (GDS-S) predicted higher PSQI global scores in aMCI caregivers, and higher scores for the ISI, Epworth Sleepiness Scale (ESS), and GDS-S in dementia caregivers. BPSD, including not only agitation, depression, and appetite change in dementia patients, but also depression, apathy, and disinhibition in aMCI patients, was related to impaired sleep quality of caregivers, but nighttime behavior was not. Age and gender were not risk factors for disturbed sleep quality. Conclusions Dementia and aMCI caregivers exhibit impaired quality of sleep versus non-caregivers. ISI, GDS-S, and ESS scores are strong indicators of poor sleep in dementia caregivers. In addition, some BPSD and parts of the neuropsychological tests may be predictive factors of sleep disturbance in dementia caregivers. PMID:25324879

  8. 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…

  9. 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)…

  10. 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…

  11. 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…

  12. 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. PMID:25724671

  13. Effects of Social Support and Coping of Family Caregivers of Older Adults with Dementia in Taiwan

    ERIC Educational Resources Information Center

    Huang, Chiung-Yu; Musil, Carol M.; Zauszniewski, Jaclene A.; Wykle, May L.

    2006-01-01

    The purpose of this study was to explore the relationship of demographic characteristics, contextual factors, social support, and coping on health outcomes of family caregivers of older adults with dementia in Taiwan. This study also examined caregiving stress and whether support moderated the effects of caregiver stress on health. Lazarus and…

  14. 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…

  15. A DBT Skills Training Group for Family Caregivers of Persons with Dementia

    ERIC Educational Resources Information Center

    Drossel, Claudia; Fisher, Jane E.; Mercer, Victoria

    2011-01-01

    A Dialectical Behavior Therapy Skills training manual (DBT Skills) was adapted for use with caregivers of individuals with dementia. Implementation occurred in a community clinic with a heterogeneous caregiver group at risk for elder abuse. Sixteen caregivers completed the 9-week group. The results point to improved psychosocial adjustment,…

  16. 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…

  17. 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…

  18. The Educational and Supportive Mobile Application for Caregivers of Dementia People.

    PubMed

    Cho, Sumi; Lee, Je Hyeok; Kim, Il Kon; Kim, Min Gyu; Sik, Kim Young; Lee, Eunjoo

    2016-01-01

    This paper presents a healthcare mobile app for caregivers of dementia patients. The app had been implemented to run on wearable and mobile devices, and it helps caregivers to take dementia test, review dementia test history, and search location of public health centers in the vicinity. The collective purpose of these features is to provide meaningful healthcare services to elderly at risk of dementia. The app uses the time and change (T&C) test for screening for dementia. The app was tried for its validity and usability for the intended purpose, and participating users were surveyed to evaluate its usefulness. PMID:27332475

  19. Formal caregiver burden in dementia: impact of behavioral and psychological symptoms of dementia and activities of daily living.

    PubMed

    Miyamoto, Yuki; Tachimori, Hisateru; Ito, Hiroto

    2010-01-01

    The purpose of this study was to identify the impact of the behavioral, psychological, and functional symptoms of dementia on the burden of formal caregivers. A cross-sectional study was conducted among formal caregivers caring for residents with dementia in Japan. The Zarit Caregiver Burden Interview (ZBI) personal strain items, the Personal Self-Maintenance Scale (PSMS), and the Troublesome Behavior Scale (TBS) were used to assess the level of formal caregiver burden, activities of daily living (ADL), and behavioral and psychological symptoms of dementia (BPSD), respectively. The data from 445 respondents were analyzed using multiple linear regression analyses to predict the burden on formal caregivers. Disruptive behaviors, such as aggression, screaming, and a low ADL levels among residents with dementia were significantly correlated with higher formal caregiver burden. The results of this study support a positive relationship between BPSD, low ADL levels, and formal caregiver burden in caring for residents with dementia. These results illustrate the various characteristics of the burdens on staff members compared with those faced by individuals who provide informal care. PMID:20682402

  20. 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

  1. A pilot study examining the awareness, attitude, and burden of informal caregivers of patients with dementia.

    PubMed

    Qadir, Farah; Gulzar, Wajiha; Haqqani, Sabahat; Khalid, Amna

    2013-01-01

    Pakistan is 1 of 5 countries with the highest projected increase in prevalence of dementia in the Asia Pacific region (Access Economic, 2006), where there is a lack of structured support network for caregivers in general and for dementia caregivers in specific. The caregivers and other related individuals predominantly rely on traditional familial support for caregiving. This approach places immense burdens on the familial caregivers (Shaji, 2009). In Pakistan, there is paucity of research evidence on care of patients with dementia and the needs of caregivers dealing with such patients. This study explores awareness among caregivers, their attitudes toward family members suffering from dementia, and their experience of burden. In-depth interviews were conducted with 12 caregivers of patients diagnosed with dementia in Rawalpindi/Islamabad Pakistan. There was a considerable lack of awareness about dementia as an illness among the caregivers. They reported a conflict between emotional and religious commitments to nurture older adult relatives and their experience of psychological, physical, and economic burden, resulting in occasional episodes of carelessness and violence toward them. The study indicated that women, particularly those who were employed outside of the home, reported higher levels of stress. It is suggested that support from extended family in all forms was perceived as a concrete form of stress relief by the primary caregiver. The findings of this study indicate that the social and financial burden of dementia on families of caregivers in Pakistan may be exacerbated if they do not have support. This indicates a need for multipronged intervention from both government and nongovernment organizations, as well as the community, to develop programs for caregivers that are nested within the cultural context of filial piety in Pakistan. These strategies should also be gender sensitive, giving priority to more at-risk groups. PMID:24579270

  2. Understanding Internet Use Among Dementia Caregivers: Results of Secondary Data Analysis Using the US Caregiver Survey Data

    PubMed Central

    2015-01-01

    Background Informal caregivers of persons with dementia experience higher levels of chronic stress in the caregiving trajectory. The Internet provides diverse types of caregiver resources that may help ameliorate their stress and relevant negative outcomes. However, there is limited information about the prevalence and factors of using Internet-based resources for health- and caregiving-related purposes in informal caregivers of persons with dementia. Objective Specific aims of this study were (1) to determine the prevalence and factors of caregiver’s health-related Internet use and (2) to compare sociodemographic and caregiving-related characteristics between health-related Internet users and non–health-related Internet users among informal caregivers of persons with dementia. Methods This quantitative investigation was a descriptive correlational design using a secondary data analysis. Primary data were collected via a survey conducted in 2009 by the National Alliance for Caregiving and the American Association of Retired Persons. Telephone interviews utilizing standardized questionnaires were used to collect self-reported information about sociodemographics and caregiving-related history (N=450). Descriptive statistics and a hierarchical binary logistic regression analysis were completed based on the stress process model. Results Approximately 59% (265/450) of dementia caregivers were identified as health-related Internet users. Caregivers’ sociodemographics and their subjective responses of caregiving stress were the most significant factors to identify health-related Internet users followed by workload assisting in instrumental activities of daily living of persons with dementia. There were significant differences for caregiver’s age, levels of education and income, hours spent caregiving, and the relationship to persons with dementia between health-related Internet users and non–health-related Internet users (P<.05 for all). After controlling for

  3. Perceived Challenges in Dementia Care by Vietnamese Family Caregivers and Care Workers in South Australia.

    PubMed

    Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita

    2015-09-01

    The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia. PMID:25935206

  4. Take up the caregiver's burden: stories of care for urban African American elders with dementia.

    PubMed

    Fox, K; Hinton, W L; Levkoff, S

    1999-12-01

    This pilot study uses an anthropological gaze to analyze transcripts of extended in-home interviews among a set of ten caregivers of African-American elders with dementia. How are race and ethnicity made to matter in the recognition of, the meaning-making around and the responses to dementing illness among a sample of African-American caregivers? The essay contrasts prevailing cultural representations of African-American caregiver burden with caregiver interview data. What we find is that current constructs which consistently demonstrate "lesser burden" among African-American caregivers compared with Whites may not adequately capture these caregivers' experiences. Interpretations of experiences, meanings of "burden" and the logic of symptoms in the illness narratives generated by these African-American caregivers of elders with dementia require attention to the embodiment of large scale sociopolitical and historical forces like residential, educational and occupational segregation, institutional racism, and economic exploitation over the life course. PMID:10647946

  5. 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. PMID:25805891

  6. Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalence, Correlates, and Causes.

    ERIC Educational Resources Information Center

    Schultz, Richard; And Others

    1995-01-01

    Assesses the prevalence and magnitude of psychiatric and physical morbidity effects among dementia caregivers, identifies individual and contextual correlates of reported health effects and their underlying causes, and examines the policy relevance of observed findings. (JPS)

  7. Adapting the Structural Family Systems Rating to Assess the Patterns of Interaction in Families of Dementia Caregivers

    ERIC Educational Resources Information Center

    Mitrani, Victoria B.; Feaster, Daniel J.; McCabe, Brian E.; Czaja, Sara J.; Szapocznik, Jose

    2005-01-01

    Purpose: This study adapted the Structural Family Systems Ratings (SFSR), an observational measure of family interactions, for dementia caregivers. This article presents the development of the SFSR-Dementia Caregiver adaptation (SFSR-DC) and examines relationships between specific family-interaction patterns and caregiver distress. Design and…

  8. 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

  9. Collaborative Care Management Reduces Disparities in Dementia Care Quality for Caregivers with Less Education

    PubMed Central

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

    2013-01-01

    BACKGROUND Lower educational attainment among informal caregivers’ may be associated with poorer outcomes for patients with dementia. OBJECTIVE To examine educational gradients in dementia care and whether the effect of a dementia collaborative care management intervention varied by the educational attainment of the informal caregiver. DESIGN Analysis of data from a cluster-randomized controlled trial. SETTING Eighteen clinics across 3 healthcare organizations in Southern California. PARTICIPANTS Dyads of Medicare recipients, ages 65 years and older with a diagnosis of dementia, and an eligible caregiver. INTERVENTION Collaborative care management for dementia. MEASUREMENTS 1) Caregiver educational attainment, 2) adherence to four dimensions of guideline-recommended processes of dementia care: Assessment, Treatment, Education/Support, and Safety pre- and post-intervention, and 3) the adjusted intervention effect (IE) for each dimension stratified by caregiver education. Each IE was estimated by subtracting the difference between pre- and post-intervention scores for the usual care participants from the difference in the intervention participants. RESULTS At baseline, caregivers with lower educational attainment had lower guideline-recommended processes of dementia care for the Treatment and Education dimensions than those with more education. However, less educated caregivers had significantly more improvement after the intervention on the Assessment, Treatment, and Safety dimensions. The IEs for those who had not graduated from high school compared to college graduates were 44.4 vs. 29.5 for the Assessment dimension (P<0.001), 36.9 vs. 15.7 for the Treatment dimension (P<0.001), and 52.7 vs. 40.9 for the Safety Dimension (P<0.001). CONCLUSIONS Collaborative care management was associated with reductions in disparities in dementia care quality among caregivers with lower educational attainment relative to more educated caregivers. PMID:23320655

  10. The Impact of Family Caregivers on Potentially Inappropriate Medication Use in Non-institutionalized Older Adults with Dementia

    PubMed Central

    Thorpe, Joshua M.; Thorpe, Carolyn T.; Kennelty, Korey A.; Gellad, Walid F.; Schulz, Richard

    2012-01-01

    Background The risk of potentially inappropriate prescription and over-the-counter medication (PIM) use in dementia patients is high. Informal caregivers often facilitate patients’ use of medications, but the effect of caregiver factors on PIM use has not been a focus of prior research. Objective To examine PIM use in dementia patients and caregivers, and identify caregiver risk factors for PIM use in dementia patients. Methods We conducted a secondary data analysis of the baseline wave of the Resources for Enhancing Alzheimer's Caregiver's Health study. The sample was comprised of 566 persons with dementia aged 65 and older and their co-residing family caregiver. PIM was defined using the 2003 Beers criteria and was examined in both dementia patients and their caregivers. Caregiver and patient risk factors included a range of socio-demographic and health variables. Results In dementia patients, 33% were taking at least 1 PIM, and 39% of their caregivers were also taking a PIM. In fully adjusted models, the following caregiver factors were associated with an increased risk of dementia patient PIM use: caregiver's own PIM use; spouse caregivers; Hispanic caregivers; and greater number of years the caregiver has lived in the United States. Increased caregiver age was associated with a decreased risk of PIM use in patients. Conclusions PIM use may be higher in dementia patients and their informal caregivers compared to the general older adult population. Further, patterns of medication use in one member of the dyad may influence PIM risk in the other dyad member. These results suggest that interventions to increase appropriate medication use in dementia patients and their caregivers should target both members of the dyad and target over-the-counter agents along with prescription medications. PMID:22683399

  11. Factors Associated with Caregiver Burden in Dementia: 1-Year Follow-Up Study

    PubMed Central

    Shim, Sang Hong; Kang, Hyo Shin; Kim, Ji Hae

    2016-01-01

    Objective Dementia symptoms (cognitive function, daily-living function, and neuropsychiatric symptoms) become more serious over time, which is likely to increase caregiver burden. The aim of this study is to investigate which dementia-related symptoms, and how the progression of these symptoms, have influenced caregiver burden during a 1-year follow-up assessment. Methods A total of 110 patients with dementia were assessed for their cognitive function, daily-living function, and neuropsychiatric symptoms. Caregivers were assessed for their caregiver burden. Bivariate analyses were conducted between caregiver burden and dementia patients' symptoms, in order to examine which particular symptoms were significantly associated with caregiver burden at the baseline. A multiple regression analysis was then conducted with each significantly associated variable with a view to identifying determinants, influencing caregiver burden. Additionally, bivariate analyses were conducted between the changes in caregiver burden and the changes in patients' symptoms, to investigate which patient variable could best describe caregiver burden from baseline to the 1-year follow-up. A multiple regression analysis was conducted with each significantly-associated change in symptom, in order to identify determinants that influence a change in caregiver burden. Results Neuropsychiatric symptoms, such as irritability, aberrant motor-behavior, delusions and disinhibition were found to be significant predictors of caregiver burden at baseline, according to multiple regression analysis. In addition, changes in neuropsychiatric symptoms, such as delusions, agitation and memory-related functioning in daily-living significantly predict a change in caregiver burden. Conclusion Our results demonstrate that neuropsychiatric symptoms and memory impairment in daily-living functions are significant predictors of an increase in caregiver burden. PMID:26766945

  12. Impaired autonomic nervous system activity during sleep in family caregivers of ambulatory dementia patients in Japan.

    PubMed

    Sakurai, Shihomi; Onishi, Joji; Hirai, Makoto

    2015-01-01

    The number of dementia patients requiring care is rapidly increasing in Japan. Consequently, a large percentage of family members, including spouses and children of those with dementia, are assuming the role of primary caregiver. Many caregivers develop health problems including sleep disorders. Some report poor quality of sleep even when sleep duration is normal. In the present study, we used actigraphy and heart rate variability spectral analysis to assess autonomic nervous system activity and quality of sleep in family caregivers of people with ambulatory dementia. The 20 caregivers who participated in our study exhibited significantly higher levels of sympathetic nervous system activity during sleep than noncaregivers. This abnormal activity was most prominent during the first half of the sleep period and was not related to overall sleep duration. We propose that relaxation is inhibited during the first half of the sleep period in this caregiver population. This may be due to increased stress, as caregivers of people with ambulatory dementia may worry about their patients waking and wandering at night, potentially injuring themselves. Our findings indicate a need for increased support for caregivers of people with dementia, including the assessment and treatment of sleep disorders. PMID:25504947

  13. Are there sensitive time periods for dementia caregivers? The occurrence of behavioral and psychological symptoms in the early stages of dementia

    PubMed Central

    Ornstein, K. A.; Gaugler, J. E.; Devanand, D. P.; Scarmeas, N.; Zhu, C. W.; Stern, Y.

    2013-01-01

    Background The behavioral and psychological symptoms associated with dementia (BPSD) can be burdensome to informal/family caregivers, negatively affecting mental health and expediting the institutionalization of patients. Because the dementia patient–caregiver relationship extends over long periods of time, it is useful to examine how BPSD impact caregiver depressive symptoms at varied stages of illness. The goal of this study was to assess the association of BPSD that occur during early stage dementia with subsequent caregiver depressive symptoms. Methods Patients were followed from the early stages of dementia every six months for up to 12 years or until death (n = 160). Caregiver symptoms were assessed on average 4.5 years following patient’s early dementia behaviors. A generalized estimating equation (GEE) extension of the logistic regression model was used to determine the association between informal caregiver depressive symptoms and BPSD symptoms that occurred at the earliest stages dementia, including those persistent during the first year of dementia diagnosis. Results BPSD were common in early dementia. None of the individual symptoms observed during the first year of early stage dementia significantly impacted subsequent caregiver depressive symptoms. Only patient agitation/aggression was associated with subsequent caregiver depressive symptoms (OR = 1.76; 95% CI = 1.04–2.97) after controlling for concurrent BPSD, although not in fully adjusted models. Conclusions Persistent agitation/aggression early in dementia diagnosis may be associated with subsequent depressive symptoms in caregivers. Future longitudinal analyses of the dementia caregiving relationship should continue to examine the negative impact of persistent agitation/aggression in the diagnosis of early stage dementia on caregivers. PMID:23725657

  14. Compassion fatigue: an application of the concept to informal caregivers of family members with dementia.

    PubMed

    Day, Jennifer R; Anderson, Ruth A

    2011-01-01

    Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understanding compassion fatigue in the informal caregiver population. Limitations of the model when applied to this population were identified as traumatic memories and the emotional relationship between parent and child, suggesting areas for future research. Conclusions. Research is needed to better understand the impact of compassion fatigue on informal caregivers through qualitative interviews, to identify informal caregivers at risk for compassion fatigue, and to provide an empirical basis for developing nursing interventions for caregivers experiencing compassion fatigue. PMID:22229086

  15. 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

  16. Compassion Fatigue: An Application of the Concept to Informal Caregivers of Family Members with Dementia

    PubMed Central

    Day, Jennifer R.; Anderson, Ruth A.

    2011-01-01

    Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understanding compassion fatigue in the informal caregiver population. Limitations of the model when applied to this population were identified as traumatic memories and the emotional relationship between parent and child, suggesting areas for future research. Conclusions. Research is needed to better understand the impact of compassion fatigue on informal caregivers through qualitative interviews, to identify informal caregivers at risk for compassion fatigue, and to provide an empirical basis for developing nursing interventions for caregivers experiencing compassion fatigue. PMID:22229086

  17. 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…

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

    ERIC Educational Resources Information Center

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

    2006-01-01

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

  19. [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. PMID:26574131

  20. 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…

  1. 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…

  2. 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

  3. Need for Resourcefulness Training for Women Caregivers of Elders with Dementia

    PubMed Central

    Zauszniewski, Jaclene A; Lekhak, Nirmala; Yolpant, Wichiya; Morris, Diana L.

    2016-01-01

    Nearly 10 million American women are caregivers of elders with dementia and may experience overwhelming stress that adversely affects their mental health. Interventions to teach them resourcefulness skills for managing stress can promote optimal mental health and facilitate continued caregiving. However, effectiveness of resourcefulness training (RT) cannot be examined until its need is established. Purpose This pilot trial with 138 women dementia caregivers examined the need for RT using subjective and objective data. Methods Data were collected before and after RT. Data analysis focused on baseline resourcefulness scores (higher scores = lower need), scores in relation to attrition, correlations among resourcefulness, stress, and depressive symptoms, and post-RT evaluation of need for RT. Results Baseline resourcefulness scores were normally distributed and showed 74% of the caregivers had a moderate to high need for RT. Reasons for attrition were unrelated to need for RT, however caregivers who dropped out had resourcefulness scores that averaged two points higher than those who remained in the study. Lower resourcefulness was associated greater stress (r=-.37, p<.001) and depressive symptoms (r=-.52, p<.001). Of the 63 caregivers who received RT, 82% (n=52) reported a felt need for RT; 94% (n=59) believed other caregivers need RT. Conclusions The results suggest a substantial need for resourcefulness training in women dementia caregivers and support moving forward to test RT effectiveness for reducing caregiver stress and depressive symptoms. PMID:26735507

  4. Integrating Estimates of the Social and Individual Costs of Caregiving into Dementia Treatment Trials

    PubMed Central

    Phillips, Charles D.

    2016-01-01

    A variety of new treatments for dementia are awaiting or undergoing randomized clinical trails. These trials focus on outcomes such as changes in cognitive function, physical function, or amyloid plaques. What is quite important and is too often missing from these trials are estimates of the impact of these treatments on the social and individual costs of providing care for those facing dementia. Until outcomes such as family caregiver time and caregiver burden are included in trails of dementia treatments, the picture of how well these treatments work will be distressingly incomplete. PMID:26997869

  5. Coping and health outcomes in spouse caregivers of persons with dementia.

    PubMed

    Neundorfer, M M

    1991-01-01

    The effects of different coping patterns on the physical health, depression, and anxiety experienced by 60 spouse caregivers of persons with dementia were examined, using Lazarus and Folkman's cognitive model of stress and coping. In addition to coping, the model included the following predictors: severity of the patient's memory and behavior problems, caregiver's appraisal of the stressfulness of those problems, and caregiver's appraisal of their options for managing caregiving. The predictors did not explain a significant amount of the variance in caregivers' physical health, but they did explain 43% of the variance in both depression and anxiety. The only coping pattern that added to the explanations was Wishing-Emotive coping, which consisted of the coping subscales of escape-avoidance, confrontive coping, and accepting responsibility. Caregivers' appraisal of stress was a significant predictor of depression and anxiety, but neither the severity of the patients' problems nor caregivers' appraisal of options was a significant predictor of any of the health outcomes. PMID:1896322

  6. Medication management concerns of ethnic minority family caregivers of people living with dementia.

    PubMed

    Gillespie, Robyn J; Harrison, Lindsey; Mullan, Judy

    2015-01-01

    This qualitative study explored the medication management experiences of Australian ethnic minority family caregivers of people living with dementia. From the perspective of this group of caregivers, medication management was a source of stress resulting from the progressive loss of ability of care recipients to manage their own medications; the complexity of the medication regime and the caregiver's lack of trust of the care recipient to safely and effectively manage medications. Caregivers used various strategies to manage medications and avoid conflict with care recipients including being watchful and involving other family members in medication management tasks. Family caregivers indicated that a lack of information and access to support to inform their medication management role added to their stress, which was exacerbated in some cases by limited English proficiency. Supportive factors noted by caregivers included a well-established relationship with a community pharmacist, involvement of a geriatrician, family support and caregiver support group participation. PMID:24339089

  7. Portraits of caregivers of end-stage dementia patients receiving hospice care.

    PubMed

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

    2009-07-01

    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 collected. Four distinct caregiver portraits emerged: (a) disengaged; (b) questioning; (c) all-consumed; and (d) reconciled. Caregivers in each portrait differed in how they responded to the impending death of the care recipient, the disease progression, and hospice care. Recognizing the differences in the ways that caregivers respond to the final stages of the disease will assist hospice and other providers in best meeting the needs of the caregivers. PMID:19565686

  8. 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

  9. Comparative outcomes of two distance-based interventions for male caregivers of family members with dementia.

    PubMed

    Gant, Judith R; Steffen, Ann M; Lauderdale, Sean A

    2007-01-01

    Data are presented on a preliminary study investigating the efficacy of 2 distance-based psychosocial interventions (N = 32) for male family dementia caregivers. Male caregivers were randomly assigned to either a basic education intervention (ie, educational booklet and biweekly check-in telephone calls) or a video intervention (ie, set of 10 videos, an accompanying workbook, and weekly telephone coaching sessions using behavioral strategies to manage challenging caregiving situations). Results did not support the greater efficacy of the video condition in reducing psychosocial distress (eg, negative affect, upset and annoyance following behavior problems) or increasing positive affect or caregiving self-efficacy. There was, however, a statistically significant effect for postintervention improvement in both the video/coaching and the educational booklet/check-in conditions. Potential reasons for the lack of differential treatment effects are discussed, along with implications for recruitment of male dementia caregivers. PMID:17545139

  10. 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. PMID:24414033

  11. Reactions of Persons with Dementia to Caregivers Singing in Morning Care Situations

    PubMed Central

    Hammar, Lena Marmstål; Emami, Azita; Engström, Gabriella; Götell, Eva

    2010-01-01

    ’Music therapeutic caregiving’, when caregivers sing for or together with persons with severe dementia during care situations, has been suggested as a way to reduce problematic behaviors in dementia care. The present study implemented this technique as an intervention in dementia care. Six caregivers participated in group interviews about their experiences of morning care situations without and with’Music therapeutic caregiving’. Through a qualitative content analysis two themes emerged.’Being in a different reality’ was based on’usual’ morning care situations. The caregivers’ experienced the persons with dementia as absent-minded; communication and cooperation were difficult. The second theme,’Being present’, was based on morning care situations with the intervention. The caregivers described communication as enhanced; the persons with dementia expressed themselves more appropriately, making cooperation possible. The results indicate that’Music therapeutic caregiving’ might lead to a more positive experience of the person with dementia and seems to increase receptivity to caregiving. PMID:21249163

  12. 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

  13. 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

  14. Psychometric Properties of the Functional Capacity Card Sort for Caregivers of People With Dementia.

    PubMed

    Piersol, Catherine Verrier; Herge, E Adel; Copolillo, Albert E; Leiby, Benjamin E; Gitlin, Laura N

    2016-07-01

    Caregiver appraisal influences care decisions and may place the person with dementia at risk. The Functional Capacity Card Sort (FCCS) was developed to determine caregiver appraisal. The objective of this study was to examine FCCS psychometric properties and utility, using data from a cross-sectional study (N = 86). The FCCS had moderately positive association (convergent validity) with a related activities of daily living (ADL) index (r = .43, p < .0001), weak negative association (discriminant validity) with an unrelated neuropsychiatric symptom index (r = -.14, p = .16), and strong caregiver agreement (interrater reliability) in ranking cards from high to low function, Kendall's W(5, 72) = 0.83, p = .0001. When compared with occupational therapy assessment, the FCCS distinguished caregiver concordant estimation (17%), underestimation (22%), and overestimation (61%) of function. The FCCS is a valid and reliable tool used in conjunction with formal assessment to identify caregiver over- or underestimation, which has implications for patient safety and caregiver education. PMID:27618848

  15. Depressive symptoms in caregivers of patients with dementia: demographic variables and burden

    PubMed Central

    De Fazio, Pasquale; Ciambrone, Paola; Cerminara, Gregorio; Barbuto, Elvira; Bruni, Antonella; Gentile, Patrizia; Talarico, Amalia; Lacava, Roberto; Gareri, Pietro; Segura-García, Cristina

    2015-01-01

    Objective Individuals suffering from dementia are affected by a progressive and significant global deterioration and, consequently, might require longer assistance in the advanced stage of the illness. The illness is a great burden on the person who takes care of a patient, namely, the caregiver. This study aims to analyze the presence and relationship of specific sociodemographic variables, subjective burden, and depressive symptoms among caregivers of patients with dementia. Methods The participants of this study were caregivers at a health care unit for the elderly in southern Italy. An evaluation of the burden of patients with dementia on caregivers was carried out using the Caregiver Burden Inventory (CBI) and depressive symptoms using the Self-Rating Depression Scale (SDS). Results A total of 150 caregivers completed the study. In all, 83 (55%) caregivers showed a total CBI score ≥36, of whom 70% showed pathological depression scores in SDS. According to SDS, 28 (19%) caregivers showed a total CBI score from 24 to 36, of whom 32% were depressed. Depression was present in 5% of the caregivers whose CBI score was <24. Hence, an association between burden and depression was evident (χ2=47.446, P<0.001). A multiple linear regression analysis showed that depression (adjusted R2=0.622, F=50.123, P<0.001) was associated with higher physical (β=0.666, P=0.001) and developmental (β=0.712, P<0.001) burdens, lower socioeconomic status (β=−4.282; P=0.002), higher level of urbanicity (β=3.070; P=0.012), and advanced age (β=2.132; P=0.08). Conclusion Our study confirms the presence of depressive symptoms in a large number of caregivers with high burden. Nevertheless, this study demonstrates that depressive symptoms are mainly associated with sociodemographic variables and, to a lesser degree, physical and developmental burdens. PMID:26170648

  16. Managing Loss and Change: Grief Interventions for Dementia Caregivers in a CBT-Based Trial.

    PubMed

    Meichsner, Franziska; Schinköthe, Denise; Wilz, Gabriele

    2016-05-01

    Dementia caregivers often experience loss and grief related to general caregiver burden, physical, and mental health problems. Through qualitative content analysis, this study analyzed intervention strategies applied by therapists in a randomized-controlled trial in Germany to assist caregivers in managing losses and associated emotions. Sequences from 61 therapy sessions that included interventions targeting grief, loss, and change were transcribed and analyzed. A category system was developed deductively, and the intercoder reliability was satisfactory. The identified grief intervention strategies were recognition and acceptance of loss and change,addressing future losses,normalization of grief, and redefinition of the relationship Therapists focused on identifying experienced losses, managing associated feelings, and fostering acceptance of these losses. A variety of cognitive-behavioral therapy-based techniques was applied with each strategy. The findings contribute to understanding how dementia caregivers can be supported in their experience of grief and facilitate the development of a manualized grief intervention. PMID:26311735

  17. 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…

  18. Characterization of Apathy in Persons with Frontotemporal Dementia and The Impact on Family Caregivers

    PubMed Central

    Merrilees, Jennifer; Dowling, Glenna A.; Hubbard, Erin; Mastick, Judy; Ketelle, Robin; Miller, Bruce L

    2012-01-01

    This study characterized daytime activity and apathy in patients with behavioral variant frontotemporal dementia (bvFTD) and semantic dementia (SD) and their family caregivers. Twenty-two patient-caregiver dyads were enrolled,13 bvFTD and 9 SD.Data were collected on behaviors and movement. Patients and caregivers wore Actiwatches for 2 weeks to record activity. We predicted that bvFTD patients would show greater caregiver report of apathy and less daytime activity than patients diagnosed with SD. Findings: Patients with bvFTD spent 25% of their day immobile while patients with SD spent 16% of their day inactive. BvFTD caregivers spent 11% of their day immobile and SD caregivers 9%. Apathy was described as present in 100% of the patients with bvFTD and in all but one patient with SD, the severity of apathy was greater in bvFTD compared to SD. Apathy correlated with caregiver emotional distress in both groups. In conclusion, apathy has been defined as a condition of diminished motivation that is difficult to operationalize. Among patients with FTD, apathy was associated with lower levels of activity, greater number bouts of immobility and longer immobility bout duration. Apathy and diminished daytime activity appeared to have an impact on the caregiver. Objective measures of behavioral output may help in formulation of a more precise definition of apathy. PMID:22261729

  19. Live Discharge from Hospice and the Grief Experience of Dementia Caregivers.

    PubMed

    Wladkowski, Stephanie P

    2016-01-01

    When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the 'live' discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer's disease, who experienced a 'live' discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual's terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a 'live' discharge. PMID:27143573

  20. Sleep disturbance, nocturnal agitation behaviors, and medical comorbidity in older adults with dementia: relationship to reported caregiver burden.

    PubMed

    Kim, Suk-Sun; Oh, Kyeung Mi; Richards, Kathy

    2014-01-01

    The purpose of this secondary analysis study was to determine whether care recipients' nighttime sleep patterns, medical comorbidity, observed nocturnal agitation behaviors, and caregivers' perceptions of nocturnal agitation behaviors in care recipients with dementia are associated with caregiver burden. Sixty care recipient-caregiver dyads, comprising older adults with geriatrician-diagnosed dementia living at home with caregivers, participated. Caregivers' perceptions of the frequency of care recipients' nocturnal agitation behaviors were associated with caregiver burden; however, objective, real-time data on the frequency of nocturnal agitation behaviors were not associated with burden. Care recipients' increased minutes of wakefulness before falling asleep and severe cognitive impairment with musculoskeletal/integument and neurological comorbidities were associated with higher caregiver burden. These results suggest that targeted interventions to reduce sleep onset latency, medical comorbidity, and caregivers' perception of frequency of nocturnal behaviors may reduce caregiver burden. PMID:24877599

  1. Impact of dementia progression on food-related processes: a qualitative study of caregivers' perspectives.

    PubMed

    Papachristou, Ilia; Giatras, Nikolette; Ussher, Michael

    2013-09-01

    As dementia progresses, one area that can help maintain connection and memories with others is within the food domain. There is little research in this area particularly from the informal caregivers' perspectives. Therefore, a qualitative study was conducted to explore the impact of dementia progression on food-related processes from the perspectives of informal caregivers. The aim of the study was to document the methodology used and to disseminate the findings to researchers, care providers, and policy makers. A total of 10 men and 10 women caregivers of those with dementia underwent a semistructured interview. Transcripts were analyzed using thematic analysis. The caregivers' narratives indicated a set pattern of decline, with food shopping being the first ability to decline, followed by food preparation and the ability to eat. Caregivers adapted to their food roles, for example, by becoming responsible for financial issues. These adaptations were described as stressful yet satisfying as food care was seen as an important social time. Educating caregivers' about the likely adaptations to food processes may increase food satisfaction in both the parties. PMID:23813792

  2. What is Known About Dementia Care Recipient Violence & Aggression Against Caregivers?

    PubMed Central

    Wharton, Tracy; Ford, Bryan K.

    2014-01-01

    While agitation is a known behavioral manifestation in advancing dementia, there is little in the literature about the risk to home-based caregivers, particularly in situations where severe aggression is present. This review article examines this issue with a focus on what is known and where further research is needed. Although consistent definitions failed to emerge from the literature, rates of violence by dementia care recipients against caregivers are estimated at greater than 20%, and may be the strongest predictor of nursing home placement. A review of available literature suggests that there is a need for interventions aimed at strategies to educate and protect the informal caregivers of dementia patients living at home, while advancing understanding of the communicative properties of behavior. With high rates of violence by care recipients against their caregivers, and low success rates of chemical restraints, there is substantial risk to the safety and well-being of caregivers. Several pilot interventions for nursing home settings have shown promise in reducing care recipient violence, and these may be adaptable for informal caregivers in home-based settings. Alternative delivery platforms using technology may be appropriate to consider, for real-time, flexible targeted intervention and support. PMID:24593178

  3. 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…

  4. 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…

  5. 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

  6. 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. PMID:24339112

  7. Experiences and concerns of family caregivers providing support to people with dementia: a cross-cultural perspective.

    PubMed

    Ivey, Susan L; Laditka, Sarah B; Price, Anna E; Tseng, Winston; Beard, Renée L; Liu, Rui; Fetterman, David; Wu, Bei; Logsdon, Rebecca G

    2013-11-01

    We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, 'What is your life like as a caregiver?' in nine focus groups (n = 75) with Filipino and non-Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a 'good person' or 'saint' and emphasized that caregiving made them stronger. PMID:24337641

  8. 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. Understanding…

  9. 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…

  10. 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…

  11. 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…

  12. 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…

  13. [Factors influencing the quality of life of family caregivers of the elderly with dementia].

    PubMed

    Pereira, Lírica Salluz Mattos; Soares, Sônia Maria

    2015-12-01

    The progression of symptoms of dementia leads to loss of autonomy and independence of the elderly. This progression suggests that a family member will assume the functions of caregiver, which can adversely affect his/her quality of life (QOL). This research is an integrative review that sought to analyze the available evidence on the factors that influence quality of life of family caregivers of the elderly with dementia. Articles published in the BDENF, Lilacs and Medline databases were examined and 477 studies were selected, of which 11 met the inclusion criteria and comprised the sample of this review. It was found that the factors that influence quality of life of caregivers are: depression; poor sleep quality; dementia type and neuropsychiatric symptoms; support, social support and access to health services; leisure; pre-existing health problems; interventions for caregiver training and spirituality. It is suggested that the nursing professional identifies the needs of the caregivers, such that strategies of care can be defined. PMID:26691808

  14. 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

  15. Translating Research Into Practice: Case Study Of A Community-Based Dementia Caregiver Intervention

    PubMed Central

    Mittelman, Mary S.; Bartels, Stephen J.

    2015-01-01

    One of the most devastating impacts of Alzheimer’s disease and related dementias is the toll on caregivers. Evidence from randomized clinical trials has demonstrated the effectiveness of providing psychosocial interventions for caregivers to lessen their burden. However, the implementation of such interventions in community settings has proved challenging. This case study describes outcomes of the implementation of an evidence-based intervention in a multisite program in Minnesota. Consistent with the original randomized clinical trial of the intervention, assessments of this program showed decreased depression and distress among caregivers. Participating in a greater number of caregiver counseling sessions was also associated with longer time to nursing home placement for the person with dementia. Some of the challenges in the community setting included having caregivers complete the full six counseling sessions and acquiring complete outcome data. Given the challenges faced in the community setting, web-based training for providers may be a cost-effective way to realize the maximum benefits of the intervention for vulnerable adults with dementia and their families. PMID:24711319

  16. Advanced Practice Nursing: Meeting the Caregiving Challenges for Families of Persons with Frontotemporal Dementia

    PubMed Central

    Merrilees, Jennifer; Ketelle, Robin

    2010-01-01

    Frontotemporal dementia (FTD), once thought to be a rare cause for dementia, is now acknowledged to be the most common presenile (before age 65) cause of dementia (1). FTD is associated with profound changes in behavior, personality, emotions, and cognition. The purpose of this paper is to describe two cases of patients with FTD in order to illustrate salient aspects of the caregiving experience. Issues faced by caregivers are organized into 6 categories: diagnosis, behavioral symptoms, function, communication, long term management and care, and maintenance of the caregiver’s emotional and physical health. Examples of interventions directed by advanced practice nurses are described. We suggest that management of FTD requires expertise as scientific advances and discoveries about FTD continually change the landscape of care. PMID:20716977

  17. Understanding the Influence of the Complex Relationships among Informal and Formal Supports on the Well-Being of Caregivers of Persons with Dementia

    ERIC Educational Resources Information Center

    Raina, Parminder; McIntyre, Chris; Zhu, Bin; McDowell, Ian; Santaguida, Pasqualina; Kristjansson, Betsy; Hendricks, Alexandra; Massfeller, Helen; Chambers, Larry

    2004-01-01

    This study examined the direct and indirect relationships between caring for a person with dementia and caregiver health. A conceptual model of the caregiver stress process considered informal caregiver characteristics, sources of caregiver stress, and the influence of informal and formal support on the well-being of the caregivers of persons with…

  18. Identifying target groups for the prevention of depression among caregivers of dementia patients

    PubMed Central

    Joling, Karlijn J.; Smit, Filip; van Marwijk, Harm W. J.; van der Horst, Henriëtte E.; Scheltens, Philip; Schulz, Richard; van Hout, Hein P. J.

    2014-01-01

    Background Depression in informal caregivers of persons with dementia is a major, costly and growing problem. However, it is not yet clear which caregivers are at increased risk of developing depression. With this knowledge preventive strategies could focus on these groups to maximize health gain and minimize effort. Methods The onset of clinically relevant depression was measured with the Center for Epidemiologic Studies - Depression Scale in 725 caregivers who were not depressed at baseline and who were providing care for a relative with dementia. Caregivers were followed over 18 months. The indices calculated to identify the most important risk indicators were: odds ratio, attributable fraction, exposure rate and number needing to be treated. Results The following significant indicators of depression onset were identified: increased initial depressive symptoms, poor self-rated health status and white or Hispanic race/ethnicity. The incidence of depression would decrease by 72.3% (attributive fraction) if these risk indicators together are targeted by a completely effective intervention. Race/ethnicity was not a significant predictor if caregivers of patients who died or were institutionalized were left out of the analyses. Conclusion Detection of only a few characteristics makes it possible to identify high-risk groups in an efficient way. Focusing on these easy-to-assess characteristics might contribute to a cost-effective prevention of depression in caregivers. PMID:21880175

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

    PubMed Central

    Sun, Fei

    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 caregiving stressors and caregiver desire to institutionalize (DTI) a patient with dementia. Design and Methods: A sample of 612 family caregivers from diverse racial/ethnic backgrounds was drawn from the baseline data of the Resources for Enhancing Alzheimer’s Caregiver Heath (REACH II) project. Multiple mediator models were run using Preacher and Hayes asymptotic and resampling strategies to assess direct and indirect effects of caregiver stressors (daily care bother, behavioral bother, and burden) on caregiver desire to institutionalize a patient with dementia. Results: Overall, PHB was positively related to caregiver desire to institutionalize their care recipients. Specifically, PHB was found to mediate the relationship between caregiving stressors and DTI in the Caucasian and Latino groups, whereas only the mediation effect of EC was significant in the African American group. Implications: Caregivers’ perceptions of quality of care helped explain their desire to institutionalize their care recipients with dementia. Including assessment of EC and PHB in clinical and social service settings is recommended for all ethnic groups. Interventions should facilitate EC behaviors among African American caregivers and address concerns of PHBs in Caucasian and Latino caregivers. PMID:22961466

  20. 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

  1. Judging Outcomes in Psychosocial Interventions for Dementia Caregivers: The Problem of Treatment Implementation

    PubMed Central

    Burgio, Louis; Corcoran, Mary; Lichstein, Kenneth L.; Nichols, Linda; Czaja, Sara; Gallagher-Thompson, Dolores; Bourgeois, Michelle; Stevens, Alan; Ory, Marcia; Schulz, Richard

    2008-01-01

    Purpose In published dementia caregiver intervention research, there is widespread failure to measure the level at which treatment was implemented as intended, thereby introducing threats to internal and external validity. The purpose of this article is to discuss the importance of inducing and assessing treatment implementation (TI) strategies in caregiving trials and to propose Lichstein’s TI model as a potential guide. Design and Methods The efforts of a large cooperative research study of caregiving interventions, Resources for Enhancing Alzheimer’s Caregiver Health (REACH), illustrates induction and assessment of the three components of TI: delivery, receipt, and enactment. Results the approaches taken in REACH vary with the intervention protocols and include using treatment manuals, training and certification of interventionists, and continuous monitoring of actual implementation. Implications Investigation and description of treatment process variables allows researchers to understand which aspects of the intervention are responsible for therapeutic change, potentially resulting in development of more efficacious and efficient interventions. PMID:11490046

  2. 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. PMID:26092207

  3. A pilot study of a yoga and meditation intervention for dementia caregiver stress.

    PubMed

    Waelde, Lynn C; Thompson, Larry; Gallagher-Thompson, Dolores

    2004-06-01

    Twelve older female dementia patient family caregivers (eight Latinas and four Caucasians) participated in a six-session manualized yoga-meditation program (called Inner Resources) designed to help caregivers cope with stress. Pre/post comparisons revealed statistically significant reductions in depression and anxiety and improvements in perceived self-efficacy. Average minutes of weekly yoga-meditation practice were significantly associated with improvements in depression. The majority of caregivers found the intervention useful and reported subjective improvements in physical and emotional functioning. These findings suggest that Inner Resources may be a feasible and effective intervention for family caregivers and may improve affect, coping, physical well-being, and stress management. PMID:15141399

  4. 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

  5. In-Home Monitoring Support for Dementia Caregivers: A Feasibility Study

    PubMed Central

    Williams, Kristine; Arthur, Anne; Niedens, Michelle; Moushey, Lois; Hutfles, Lewis

    2012-01-01

    Technology provides new opportunities for interventions to improve quality and access to health care. This study evaluated a telehealth application to support family dementia caregivers providing homecare. We explored feasibility of in-home video monitoring and feedback to help caregivers and reduce caregiving burden. A caregiver-patient dyad was recruited from The University of Kansas Alzheimer’s Disease Center. The caregiver triggered video-recordings on a laptop computer using a remote control that also recorded 5 minutes prior to pressing “record.” Recordings were automatically uploaded via the Internet for interdisciplinary team review and feedback. Issues related to Internet transfer and storage of health information and computer security were addressed. Professionals reported the value of video-recordings for identifying antecedents and evaluating caregiver responses. The caregiver reported improved communication and behavior management and ease of use. This study developed protocols, processes, and contractual arrangements and established the feasibility and benefits of home monitoring as a basis for ongoing research. PMID:22997349

  6. Effects of a Telephone-Based Exercise Intervention for Dementia Caregiving Wives: A Randomized Controlled Trial

    PubMed Central

    Connell, Cathleen M; Janevic, Mary R.

    2011-01-01

    Despite the importance of self-care for dementia caregivers, few interventions have included a focus on health behaviors. The current study reports outcomes of a telephone-based exercise intervention designed for women caring for a spouse with dementia. Caregivers (N = 137) were randomized to intervention or control conditions. Participants with at or below-median exercise scores at baseline had a significantly greater increase in exercise at six-month follow-up compared to their control counterparts. At 6 months, participants had greater reductions in perceived stress relative to controls. Participants also reported significantly greater increases in exercise self-efficacy than caregivers in the control group at both follow-up points. . Results indicate that spouse caregivers are able to increase their physical activity and that a focus on exercise in multi-component interventions may be beneficial. Debate and discussion is needed to inform expectations for program impacts and their maintenance and to explore the interface between enhanced self-care and caregiving perceptions. PMID:21709757

  7. Factors Associated with Caregiver Readiness to Use Nonpharmacologic Strategies to Manage Dementia-related Behavioral Symptoms

    PubMed Central

    Rose, Karen

    2013-01-01

    Background Nonpharmacologic strategies to manage dementia-related behavioral symptoms depend upon caregiver implementation. Caregivers may vary in readiness to use strategies. We examined characteristics associated with readiness, extent readiness changed during intervention, and predictors of change in readiness. Methods Data from a randomized trial involving 119 caregivers in a nonpharmacologic intervention for managing behavioral symptoms. Baseline measures included caregiver, patient, and treatment-related factors. At initial (2 weeks from baseline) and final (16-weeks) intervention sessions, interventionists rated caregiver readiness as pre-action (precontemplation=1; contemplation=2; preparation=3) or action (=4). Ordinal logistic regression identified baseline characteristics associated with initial readiness. Mc Nemar-Bowker test of symmetry described change in readiness; binary logistic regression identified baseline predictors of change in readiness (initial-to-final session). One-way MANOVA identified treatment factors (dose/intensity, number of strategies used, perceived benefits, therapeutic engagement) associated with change in readiness. Results At initial intervention session, 67.2% (N=80) of caregivers were in pre-action, 32.8% (N=39) in action. Initial high readiness was associated with better caregiver mood, less financial difficulty, lower patient cognition and more behavioral symptoms. By final session, 72% (N=79) were in action, 28% (N=31) in pre-action; caregivers with less financial difficulty improved in readiness (B =−.70, p=.017); those in action were more therapeutically engaged (F (2,107)=3.61, p=.030) and perceived greater intervention benefits (F (2, 88)=6.06, p=.003). Conclusion Whereas patient and caregiver-related factors were associated with initial readiness, financial stability, therapeutic engagement and perceived benefits enhanced probability of change. Understanding caregiver readiness and factors associated with its change

  8. 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.…

  9. Sleep Quality in Family Caregivers of Individuals With Dementia: A Concept Analysis.

    PubMed

    Peng, Hsi-Ling; Lorenz, Rebecca A; Chang, Yu-Ping

    2016-08-01

    Poor sleep quality in family caregivers may impact their health status and cause quality of life to decline. Nurses are conducting an increasing number of studies that use sleep quality or related concepts as a main indicator to assess caregiver's sleep. Therefore, a clear understanding of sleep quality and how it is different from other relevant sleep domains is essential. This article aimed to analyze the concept of sleep quality using the steps outlined by Walker and Avant. Findings include (a) attributes of sleep quality including subjective perception of sleep, sleep hours, and evaluation of activity after awaking; (b) antecedents of sleep quality including the ability to get naturally into the sleep cycle and status of conscious state; and (c) consequences of sleep quality including bio-psycho-social and global dimensions of health. This article intends to help clinicians and researchers better understand and define sleep quality in dementia caregivers. PMID:26514965

  10. Risk Factors of High Burden Caregivers of Dementia Patients Institutionalized at Day-Care Centres.

    PubMed

    Maseda, Ana; González-Abraldes, Isabel; de Labra, Carmen; Marey-López, José; Sánchez, Alba; Millán-Calenti, José C

    2015-08-01

    We examined which variables are associated with day care centres utilization among caregivers of dementia patients. A cross-sectional analysis of socio-demographic variables, relationship with caring and psychological aspects was conducted in 58 informal caregivers with intense burden. 58.6 % used day care assistance and 41.4 % did not. The results showed the importance of the commitment between the caregiver and their family and friends. The use of day care services is independent of the age, gender, educational level, marital status, occupation and relationship with the patient. However, in the multivariate analysis the provision of help by families and friends predicted the use of day care assistance. The bivariate analysis showed a significant relationship between depressive symptoms and self-rated health with day care attendance. Screening the help provision from families and friends in caregivers of dementia patients with intense burden would be relevant to design interventions which delay their institutionalization and reduce costs. PMID:25535044

  11. Addressing everyday challenges: feasibility of a family caregiver training program for people with dementia.

    PubMed

    DiZazzo-Miller, Rosanne; Samuel, Preethy S; Barnas, Jean M; Welker, Keith M

    2014-01-01

    OBJECTIVE. The purpose of this study was to examine the feasibility and efficacy of the Family Caregiver Training Program for assisting with the basic activities of daily living of people with dementia. METHOD. A one-group pretest-posttest research design with a 3-mo follow-up was used to examine the efficacy of a manualized education program for caregivers. The 6-hr training was delivered to 72 family caregivers over 3 consecutive weeks (2 hr/wk) by trained clinicians. RESULTS. Caregivers showed a significant gain in knowledge of how to effectively assist with communication and nutrition, t(52) = 7.05, p < .000; transfers and toileting, t(45) = 3.10, p < .003; and bathing and dressing, t(44) = 2.71, p < .01, of their care recipients. CONCLUSION. Our findings demonstrate that this manualized intervention protocol is a promising method of equipping family members with the skills needed to face their everyday challenges in caring for people with dementia. PMID:24581408

  12. Depression of Family Caregivers Is Associated with Disagreements on Life-Sustaining Preferences for Treating Patients with Dementia

    PubMed Central

    Tsai, Chia-Fen; Lee, Yao-Tung; Lee, Wei-Ju; Hwang, Jen-Ping; Wang, Shuu-Jiun; Fuh, Jong-Ling

    2015-01-01

    Background Family caregivers may not agree with patients with dementia regarding attitudes toward end-of-life preferences, and the effects of this type of disagreement are not well understood. This study sought to identify such a disagreement and its predictors. Methods A cross-sectional sample of 84 family caregivers and patients with dementia was recruited from memory clinics. We used the Mini-Mental State Examination, Neuropsychiatric Inventory, Clinical Dementia Rating, and Katz index of independence in activities of daily living to assess patient symptoms, functions, and severity of dementia. Caregivers completed questionnaires on perceived patient end-of-life care preferences, caregiver end-of-life care preferences for patients, Zarit Burden Interview (ZBI), Center for Epidemiological Studies–Depression Scale (CES-D), and knowledge of clinical complications of advanced dementia. Results The self-disclosure rates of patient preferences were 34.5% for tube feeding, 39.3% for cardiopulmonary resuscitation, and 45.2% for mechanical ventilation. For patients who had disclosed preferences, the disagreement rate between them and their caregivers was 48.3% for tube feeding, 48.5% for cardiopulmonary resuscitation, and 60.3% for mechanical ventilation. Caregiver depression (i.e., CES-D ≥16) was associated with disagreements on cardiopulmonary resuscitation (adjusted odds ratio (aOR) = 6.6, 95% CI = 1.4–31.1, P = 0.01) and mechanical ventilation (aOR = 14, 95% CI = 2.2–87.2, P = 0.005) preferences. Conclusion The preferences of end-of-life issues differed greatly between dementia patients and their caregivers. Depression in caregivers is associated with such discrepancy. PMID:26230958

  13. Development of the Risk Appraisal Measure (RAM): A Brief Screen to Identify Risk Areas and Guide Interventions for Dementia Caregivers

    PubMed Central

    Czaja, Sara J.; Gitlin, Laura N.; Schulz, Richard; Zhang, Song; Burgio, Louis D.; Stevens, Alan B.; Nichols, Linda O.; Gallagher-Thompson, Dolores

    2009-01-01

    Objectives Family caregivers play a significant role in the health care of patients with dementia yet their needs and health status are often overlooked. This study developed and validated a brief screening measure for use in research, health care and community settings to systematically assess well-being and identify needed areas of support for caregivers of patients with dementia. Design This study used data from Resources for Enhancing Alzheimer’s Caregiver Health (REACH II), a multi-site, randomized, clinical trial of a behavioral intervention designed to improve the quality of life of caregivers in multiple domains. PARTICIPANTS: Two-hundred and twelve Hispanic, 211 Black/African American and 219 White family community dwelling dementia caregiver dyads providing in-home care to patients with dementia. Measurement Based on conceptual and psychometric analyses, a 16-item measure was developed that taps six domains linked to caregiver risk and amenable to intervention: depression, burden, self-care and health behaviors, social support, safety, and patient problem behaviors. The reliability and validity of the instrument was evaluated with 642 dementia caregiver dyads from the REACH II program. Results The measure was found to have acceptable internal consistency for a multi-dimensional scale and similar measurement properties for each of the racial/ethnic groups. Concurrent validity was also demonstrated for the measure. Conclusion The REACH Risk Appraisal Measure (RAM) developed in this study shows promise as an assessment tool that can be used in research, clinical and community settings to guide, prioritize, and target needed areas of support for caregivers of patients with dementia. PMID:19453305

  14. Sleep Pattern Differences Between Older Adult Dementia Caregivers and Older Adult Noncaregivers Using Objective and Subjective Measures

    PubMed Central

    Rowe, Meredeth A.; McCrae, Christina S.; Campbell, Judy M.; Pe Benito, Andrea; Cheng, Jing

    2008-01-01

    Study Objectives: Informal caregivers of persons with dementia often complain about poor quality sleep; however, studies on caregivers have mixed results when examining sleep values. The purpose of this study was to describe the sleep patterns in a subset of dementia caregivers who provide care during the night, and compare those patterns to noncaregiving adults. Methods: Data from a study on dementia caregivers and from a study of sleep in older adults were used. Both studies used objective and subjective methods to measure sleep in the home setting over a 7-day period. Participants were over 60 years old and relatively healthy. Results: Older dementia caregivers had worse objectively measured sleep than noncaregiving older adults, characterized by fewer minutes asleep and longer time to fall asleep. For subjectively measured sleep, depressive symptoms were the only predictive factor, with depressed participants reporting longer total sleep time, greater sleep onset latency, and wake after sleep onset. Caregivers' sleep had greater night-to-night variability. Conclusions: Caregivers consistently report poorer quality sleep and greater fatigue than noncaregivers. However, when sleep is measured objectively and subjectively, a mixed picture emerges regarding sleep deficits. Thus sleep changes are caused by a multitude of factors affecting sleep in a variety of ways. It is important for health care providers to assess sleep adequacy and depression in caregivers. Citation: Rowe MA; McCrae CS; Campbell JM; Benito AP; Cheng J. Sleep pattern differences between older adult dementia caregivers and older adult noncaregivers using objective and subjective measures. J Clin Sleep Med 2008;4(4):362–369. PMID:18763429

  15. 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

  16. Spousal Caregiving for Partners With Dementia: A Deductive Literature Review Testing Calasanti's Gendered View of Care Work.

    PubMed

    Hong, Sung-Chull; Coogle, Constance L

    2016-07-01

    Spousal caregiving allows stressed couples to continue living in the community rather than seeking institutional solutions. Dr. Toni Calasanti has postulated that there are gender differences in the care work styles and coping strategies used by spousal caregivers dealing with dementia. While caregiving husbands tend to adopt task-oriented (masculine) approaches, caregiving wives are more likely to take an emotionally focused (feminine) orientation. These differences result in the need for varied interventions. Male caregivers tend toward a managerial approach, whereas female caregivers generally adopt a relational approach. This distinction was examined in the course of a literature review through the deductive process. It was determined that the core thesis of such a gender-based view of care work as a tiered entity threaded with masculinity/femininity remains quite plausible in contrast to models based on self-perceived gender identity of caregivers that require more exploration. Recommendations for future investigations are offered as new questions arise. PMID:25037154

  17. 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

  18. When it is time to hang up the keys: the driving and dementia toolkit – for persons with dementia (PWD) and caregivers – a practical resource

    PubMed Central

    2013-01-01

    Background The aim of this project was to develop a toolkit to assist persons with dementia (PWD) and their caregivers, in planning for retirement from driving. The information gathered was used to develop a tool that can assist reflection about, and make sound decisions in this challenging area of the dementia journey. The purpose is to keep safe drivers on the road and to prepare those who are moving towards being at risk of being involved in crashes, to eventually stop driving when they are unsafe. The toolkit was prepared to address the concerns of both the PWD as well as the caregivers. Strategies and solutions are presented for both the PWD and the caregivers. A grief insert was also developed that can assist caregivers in supporting the PWD in the grief process that can accompany losing one’s driving privileges. PMID:24180371

  19. 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

  20. 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

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

    PubMed

    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

  2. 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

  3. Effectiveness of a fotonovela for reducing depression and stress in Latino dementia family caregivers.

    PubMed

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

    2015-01-01

    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 caregiver (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

  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. Development of an Online Platform to Support the Network of Caregivers of People with Dementia.

    PubMed

    Verwey, Renée; van Berlo, Miranda; Duymelinck, Saskia; Willard, Sarah; van Rossum, Erik

    2016-01-01

    In the Netherlands, care technology is used insufficiently to support people with dementia, their family and professional caregivers. In this project we integrate a range of services and applications into an online platform, with the aim to strengthen these networks and to support communication between their members. The prototype of the platform was made in an iterative user centered way. Semi structured (group) interviews were conducted to specify the requirements. The platform consists of 'cubes' with information about dementia (care), video communication options, a calendar and a care plan. The first prototype of the platform was valued by the participants, but privacy matters and registration issues were pointed out when using a shared care plan. Additional applications to monitor health and safety will be integrated in the second prototype. This prototype will be tested on its usability, feasibility and desirability during a pilot study in spring 2016. PMID:27332265

  6. Reexamining the relationships among dementia, stigma, and aging in immigrant Chinese and Vietnamese family caregivers.

    PubMed

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

    2008-09-01

    Prior literature emphasizes that Asian Americans with dementia may be particularly vulnerable to the stigma of chronic and severe 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 revealed two sources: the stigma of chronic and severe mental illness and a stigma reflecting negative stereotypes of aging or the aged. Chinese and Vietnamese cultural views of normal aging are not unitary 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

  7. 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

  8. Caregiver outcomes of partners in dementia care: effect of a care coordination program for veterans with dementia and their family members and friends.

    PubMed

    Bass, David M; Judge, Katherine S; Snow, A Lynn; Wilson, Nancy L; Morgan, Robert; Looman, Wendy J; McCarthy, Catherine A; Maslow, Katie; Moye, Jennifer A; Randazzo, Ronda; Garcia-Maldonado, Maurilio; Elbein, Richard; Odenheimer, Germaine; Kunik, Mark E

    2013-08-01

    The objective is to test the effectiveness of Partners in Dementia Care (PDC), a care-coordination program that integrates and improves access to medical and nonmedical services, while strengthening the informal care network and providing information, coaching, and emotional support. PDC was delivered via a partnership between Veterans Affairs (VA) Medical Centers (VAMCs) and Alzheimer's Association chapters, for caregivers of veterans with dementia living in the community and receiving primary care from the VA. The initial sample was 486 caregivers of 508 veterans with diagnosed dementia. Outcomes were evaluated for 394 and 324 caregivers who completed 6- and 12- month follow-up, respectively. PDC had a standardized protocol that included assessment and reassessment, action planning, and ongoing monitoring. It was delivered by telephone and e-mail for cost efficiency and the ability to handle caseloads of 100 to 125. Care coordinators from VAMCs and Alzheimer's Association chapters worked as a team using a shared computerized record. A variety of caregiver outcomes was measured after 6 and 12 months. Intervention group caregivers had significant improvements in outcomes representing unmet needs, three types of caregiver strains, depression, and two support resources. Most improvements were evident after 6 months, with more-limited improvements from Months 6 to 12. Some outcomes improved for all caregivers, whereas some improved for caregivers experiencing more initial difficulties or caring for veterans with more-severe impairments. PDC is a promising model that improves linkages between healthcare services and community services, which is a goal of several new national initiatives such as the National Plan to Address Alzheimer's Disease and a proposed amendment to the Older Americans Act. PMID:23869899

  9. Development of a nursing care problems coping scale for male caregivers for people with dementia living at home

    PubMed Central

    Nishio, Midori; Ono, Mitsu

    2015-01-01

    Objective: The number of male caregivers has increased, but male caregivers face several problems that reduce their quality of life and psychological condition. This study focused on the coping problems of men who care for people with dementia at home. It aimed to develop a coping scale for male caregivers so that they can continue caring for people with dementia at home and improve their own quality of life. The study also aimed to verify the reliability and validity of the scale. Patients/Material and Methods: The subjects were 759 men who care for people with dementia at home. The Care Problems Coping Scale consists of 21 questions based on elements of questions extracted from a pilot study. Additionally, subjects completed three self-administered questionnaires: the Japanese version of the Zarit Caregiver Burden Scale, the Depressive Symptoms and the Self-esteem Emotional Scale, and Rosenberg Self-Esteem Scale. Results: There were 274 valid responses (36.1% response rate). Regarding the answer distribution, each average value of the 21 items ranged from 1.56 to 2.68. The median answer distribution of the 21 items was 39 (SD = 6.6). Five items had a ceiling effect, and two items had a floor effect. The scale stability was about 50%, and Cronbach’s α was 0.49. There were significant correlations between the Care Problems Coping Scale and total scores of the Japanese version of the Zarit Caregiver Burden Scale, the Depressive Symptoms and Self-esteem Emotional Scale, and the Rosenberg Self-Esteem Scale. Conclusion: The answers provided on the Care Problems Coping Scale questionnaire indicated that male caregivers experience care problems. In terms of validity, there were significant correlations between the external questionnaires and 19 of the 21 items in this scale. This scale can therefore be used to measure problems with coping for male caregivers who care for people with dementia at home. PMID:26380589

  10. 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

  11. The experience of high levels of grief in caregivers of persons with Alzheimer's disease and related dementia.

    PubMed

    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 describe the lived experience of 44 spouses and adult children who are caregivers of persons with Alzheimer's disease and related dementias (ADRD) and scored high on the Marwit and Meuser Caregiver Grief Inventory, Short Form (MM-CGI-SF). This study presents qualitative results from a mixed-methods descriptive study (N = 201). Seven themes emerged from the qualitative data that detailed the caregiving experience of the individuals with high grief: (a) yearning for the past, (b) regret and guilt, (c) isolation, (d) restricted freedom, (e) life stressors, (f) systemic issues, and (g) coping strategies. The first 2 themes reflect grief reactions, whereas isolation, restricted freedom, life stressors, and systemic issues possessed elements of both grief and caregiver burden and stress. Coping strategies used by this group of caregivers included spiritual faith, social supports, and pets. Quantitative analysis confirmed that these themes are unique to individuals with high levels of grief compared with those with moderate/low levels of grief, except for the coping strategies of social support and spiritual faith. Caregivers with high levels of grief may benefit from supportive interventions that are based on reducing feelings of isolation, lack of freedom, and increased guilt and regret, while also addressing feelings of loss. Interventions that facilitate building a supportive network are suggested. Using a screening tool such as the MM-CGI-SF will help in identifying caregivers with high levels of grief who may be in need of additional support. PMID:18958942

  12. 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…

  13. A Speech-Language Pathologist's Guide to Creating a Support Group for Caregivers of Persons with Dementia

    ERIC Educational Resources Information Center

    Morrow-Odom, K. Leigh; Robbins, Sarah M.

    2012-01-01

    The purpose of this article is to provide basic guidelines to successfully establish a support group for caregivers of persons with dementia. Support groups should provide its members with a community of support, as well as coping and management strategies to improve daily function of loved ones. This should improve the care provided, and the…

  14. 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…

  15. 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…

  16. Assistive devices caregivers use and find helpful to manage problem behaviors of dementia

    PubMed Central

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

    2014-01-01

    Purpose Use of assistive devices in caring for individuals with dementia has not been systematically examined, particularly as it concerns managing behavioral symptoms. We tested a nonpharmacologic intervention to manage behaviors that involved instructing families in effective communication techniques, simplifying tasks and the home environment and using assistive devices. This paper describes the assistive devices provided to families assigned to intervention, extent of use of issued devices, their perceived helpfulness, and cost. Design and Methods Following each treatment session, occupational therapists (OT) documented time spent training in the use of strategies to manage problem behaviors. For families receiving assistive devices, OTs asked caregivers after 4 months whether they continued to use the device (yes/no), and extent to which it helped manage the targeted problems (not at all, somewhat, very helpful). We also tracked the costs associated with ordering, delivering and installing devices. Results Of 272 caregiver-patient dyads enrolled in the original trial, 136 were randomized to the intervention group, of whom 63 received one or more assistive devices. Of 13 intervention sessions, an average of 4 (31%) involved discussing or training caregivers in using assistive devices. A total of 197 devices (3 per dyad) were issued of which 87.6% were reported in use at 4 months. Caregivers reported that overall, devices were somewhat to very helpful. Devices ranged in cost from US$4.80 to US$282.93 with an average cost per dyad of US$152.52(SD=US$102.70) which included the device, its ordering, delivery and installation. PMID:25429254

  17. Lived Experience of Caregivers of Persons with Dementia and the Impact on their Sense of Self: A Qualitative Study in Singapore.

    PubMed

    Tuomola, Jane; Soon, Jiaying; Fisher, Paul; Yap, Philip

    2016-06-01

    The prevalence of dementia is increasing, especially in Asia. Caregivers of people with dementia are at greater risk of psychological morbidity; however, most studies on caregiving have been conducted in Western populations. As a caregiver's experience can be influenced by cultural factors, this needs exploring further. This study explored the lived experience of caregivers of dementia patients in Singapore and the impact of caring on their sense of self. Six Chinese female spousal caregivers were interviewed and their experiences were analyzed using interpretative phenomenological analysis (IPA). Four super-ordinate themes were identified: impact of caregiving, acceptance of destiny, taking control, and view of self. The findings reflected the influence of Confucian values. Clinical implications are discussed, including more culturally sensitive services. PMID:26923465

  18. Relative Preservation of Advanced Activities in Daily Living among Patients with Mild-to-Moderate Dementia in the Community and Overview of Support Provided by Family Caregivers

    PubMed Central

    Takechi, Hajime; Kokuryu, Atsuko; Kubota, Tomoko; Yamada, Hiroko

    2012-01-01

    Little is known about the extent to which advanced activities of daily living among patients with dementia are preserved and how family caregivers of these patients support them in the community. In this cross-sectional assessment of pairs of patients with dementia and their family caregivers, we evaluated basic, instrumental, and advanced activities of daily living by comparing past and present status observed by caregivers with subjective estimations by patients with dementia. We also asked about ways in which support was provided by family caregivers. Thirty-nine pairs of patients with dementia and caregivers who presented to our memory clinic were interviewed. The mean age of patients with dementia was 75.3 ± 7.0 years, and Mini-Mental State Examination scores were 22.3 ± 3.4. We found relative preservation of advanced activities of daily living compared with instrumental activities of daily living. Caregivers provided instrumental, informational, and reminding support to patients with dementia. These findings may reinforce the concept of person-centered support of patients with dementia in the community. PMID:22811947

  19. 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

  20. 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

  1. Cranial Electrical Stimulation Potential Use in Reducing Sleep and Mood Disturbances in Persons With Dementia and Their Family Caregivers

    PubMed Central

    Rose, Karen M.; Taylor, Ann Gill; Bourguignon, Cheryl; Utz, Sharon W.; Goehler, Lisa E.

    2009-01-01

    Family caregivers of persons with dementia and their care recipients frequently experience sleep and mood disturbances throughout their caregiving and disease trajectories. Because conventional pharmacologic treatments of sleep and mood disturbances pose numerous risks and adverse effects to elderly persons, the investigation of other interventions is warranted. As older adults use complementary and alternative medicine interventions for the relief of sleep and mood disturbances, cranial electrical stimulation, an energy-based complementary and alternative medicine, may be a viable intervention. The proposed mechanism of action and studies that support cranial electrical stimulation as a modality to reduce distressing symptoms are reviewed. Directions for research are proposed. PMID:18552605

  2. 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 Fk; 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. PMID:24535819

  3. 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…

  4. Mental health and diurnal salivary cortisol patterns among African American and European American female dementia family caregivers.

    PubMed

    McCallum, T J; Sorocco, Kristen H; Fritsch, Thomas

    2006-08-01

    Using a sociocultural stress and coping model, this pilot study examines the influence of depressive symptoms and stress on diurnal salivary cortisol patterns among African American (N=30) and European American (N=24) female dementia caregivers and noncaregivers (African American, N=48; European American, N=15). Caregiving participants completed the Center for Epidemiological Studies Depression Scale (CES-D), Perceived Stress Scale (PSS), and Stress-Related Growth Scale (SRGS) as respective measures of depressive symptoms, stress, and stress resilience. Participants also collected five saliva samples daily for two consecutive days. African American caregivers scored significantly higher than European American caregivers on the SRGS, but they did not differ on the PSS and CES-D scales. Regression analyses with age, ethnicity, caregiving status, and depressive symptoms as predictors, and cortisol slope as criterion, showed that only age and ethnicity predicted cortisol slope. African Americans had flatter slopes than the European Americans sampled, regardless of caregiving status. Findings highlight the role of cultural beliefs and of ethnicity in explaining cortisol function. PMID:16861373

  5. "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…

  6. Tailored Activities to Manage Neuropsychiatric Behaviors in Persons with Dementia and Reduce Caregiver Burden: A Randomized Pilot Study

    PubMed Central

    Gitlin, Laura N.; Winter, Laraine; Burke, Janice; Chernett, Nancy; Dennis, Marie P.; Hauck, Walter W.

    2009-01-01

    Objective To test whether the Tailored Activity Program for at-home dementia patients reduces neuropsychiatric behaviors and caregiver burden. Method A prospective, two-group controlled pilot study with 60 dyads randomized to treatment or wait-list control. Dyads were interviewed at baseline and 4 months (trial endpoint); control participants then received intervention and were reassessed 4 months later. The 8-session occupational therapy intervention involved neuropsychological and functional testing from which activities were customized and instruction in use provided to caregivers. Results At 4-months, compared to controls, intervention caregivers reported reduced frequency of behaviors (p = .010; Cohen’s d = .72), specifically for shadowing (p = .003, Cohen’s d = 3.10) and repetitive questioning (p = .23, Cohen’s d = 1.22); greater activity engagement (p = .029, Cohen’s d = .61); and ability to keep busy (p = .017, Cohen’s d = .71). Also, fewer intervention caregivers reported agitation (p = .014, Cohen’s d = .75) or argumentation (p = .010, Cohen’s d = .77). Caregiver benefits included fewer hours doing things (p = .005, Cohen’s d = 1.14) and being on duty (p = .001, Cohen’s d = 1.01), greater mastery (p = .013, Cohen’s d = .55), self-efficacy (p = .011, Cohen’s d = .74), and use of simplification techniques (p = .023, Cohen’s d = .71). Wait-list control participants showed similar benefits for behavioral frequency following intervention. Conclusions Results suggest clinically-relevant benefits for both dementia patients and caregivers, with treatment minimizing the occurrence of behaviors that commonly trigger nursing home placement. PMID:18310553

  7. Dementia

    MedlinePlus

    PATIENT / FAMILY TEACHING SHEET Dementia What is dementia? Dementia is a result of diseases that affect how the brain works. Alzheimer’s disease is the most common cause of dementia. Symptoms occur ...

  8. Dementia

    MedlinePlus

    ... Awards Enhancing Diversity Find People About NINDS NINDS Dementia Information Page Condensed from Dementia: Hope Through Research ... en Español Additional resources from MedlinePlus What is Dementia? Dementia is not a specific disease. It is ...

  9. 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)

  10. 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. PMID:24986200

  11. Longitudinal Relationship of Low Leisure Satisfaction but not Depressive Symptoms With Systemic Low-Grade Inflammation in Dementia Caregivers

    PubMed Central

    2014-01-01

    Objectives. This study aimed to further elucidate the biobehavioral mechanisms linking dementia caregiving with an increased cardiovascular disease risk. We hypothesized that both elevated depressive symptoms and a behavioral correlate of depression, low leisure satisfaction, are associated with systemic inflammation. Method. We studied 121 elderly Alzheimer’s disease caregivers who underwent 4 annual assessments for depressive symptoms, leisure satisfaction, and circulating levels of inflammatory markers. We used mixed-regression analyses controlling for sociodemographic and health-relevant covariates to examine longitudinal relationships between constructs of interest. Results. There were inverse relationships between total leisure satisfaction and tumor necrosis factor-α (TNF-α; p = .047), interleukin-8 (IL-8; p < .001), and interferon-γ (IFG; p = .020) but not with IL-6 (p = .21) and C-reactive protein (p = .65). Lower enjoyment from leisure activities was related to higher levels of TNF-α (p = .045), IL-8 (p < .001), and IFG (p = .002), whereas lower frequency of leisure activities was related only to higher IL-8 levels (p = .023). Depressive symptoms were not associated with any inflammatory marker (all p values > .17). Depressive symptoms did not mediate the relationship between leisure satisfaction and inflammation. Discussion. Lower satisfaction with leisure activities is related to higher low-grade systemic inflammation. This knowledge may provide a promising way of improving cardiovascular health in dementia caregivers through behavioral activation treatments targeting low leisure satisfaction. PMID:23650246

  12. Caregivers for Dementia Patients: Complex Determinants of Well-Being and Burden.

    ERIC Educational Resources Information Center

    Gwyther, Lisa P.; George, Linda K.

    1986-01-01

    This symposium includes three papers that provide new insights into the caregiving experience. Papers focus upon a group of caregivers who appear to be at special risk for negative outcomes, the family caregivers of older persons suffering from Alzheimer's Disease or a related disorder. (Author/ABB)

  13. Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review.

    PubMed

    Parker, Deborah; Mills, Sandra; Abbey, Jennifer

    2008-06-01

    Objectives  The objective of this review was to assess the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community. Inclusion criteria  Types of participants  Adult caregivers who provide support for people with dementia living in the community (non-institutional care). Types of interventions  Interventions designed to support caregivers in their role such as skills training, education to assist in caring for a person living with dementia and support groups/programs. Interventions of formal approaches to care designed to support caregivers in their role, care planning, case management and specially designated members of the healthcare team - for example dementia nurse specialist or volunteers trained in caring for someone with dementia. Types of studies  This review considered any meta-analyses, systematic reviews, randomised control trials, quasi-experimental studies, cohort studies, case control studies and observational studies without control groups that addressed the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community. Search strategy  The search sought to identify published studies from 2000 to 2005 through the use of electronic databases. Only studies in English were considered for inclusion. The initial search was conducted of the databases, CINAHL, MEDLINE and PsychINFO using search strategies adapted from the Cochrane Dementia and Cognitive Improvement Group. A second more extensive search was then conducted using the appropriate Medical Subject Headings (MeSH) and keywords for other available databases. Finally, hand searching of reference lists of articles retrieved and of core dementia, geriatric and psycho geriatric journals was undertaken. Assessment of quality  Methodological quality of each of the articles was assessed by two independent reviewers using appraisal checklist developed by the Joanna

  14. Medical Management of Frontotemporal Dementias: The Importance of the Caregiver in Symptom Assessment and Guidance of Treatment Strategies

    PubMed Central

    2011-01-01

    There are no currently Food and Drug Administration-approved or proven off-label treatments for the frontotemporal dementias (FTD). Clinicians, care-givers, and patients struggle regularly to find therapeutic regimens that can alleviate the problematic behavioral and cognitive symptoms associated with these devastating conditions. Success is “hit or miss” and the lessons learned are largely anecdotal to date. Drug discovery in this area has been largely hampered by the heterogeneous clinical presentations and pathological phenotypes of disease that represent significant obstacles to progress in this area. Biologically, plausible treatment strategies include the use of antidepressants (selective serotonin reuptake inhibitors or serotonin-specific reuptake inhibitor and monoamine oxidase inhibitors), acetylcholinesterase inhibitors, N-methyl-D-aspartic acid antagonists, mood stabilizers, antipsychotics, stimulants, antihypertensives, and agents that may ameliorate the symptoms of parkinsonism, pseudobulbar affect, and motor neuron disease that can often coexist with FTD. These medications all carry potential risks as well as possible benefits for the person suffering from FTD, and a clear understanding of these factors is critical in selecting an appropriate therapeutic regimen to maximize cognition and daily functions, reduce behavioral symptoms, and alleviate caregiver burden in an individual patient. The role of the caregiver in tracking and reporting of symptoms and the effects of individual therapeutic interventions is pivotal in this process. This manuscript highlights the importance of establishing an effective therapeutic partnership between the physician and caregiver in the medical management of the person suffering from FTD. PMID:21647712

  15. 'Journeys' in the life-writing of adult-child dementia caregivers.

    PubMed

    Zimmermann, Martina

    2013-09-01

    This article explores how Alzheimer's disease caregivers struggle under the impact of a parent's memory loss on their own personality. In particular, it analyses how caregivers perceive and, thus, present their experiences of the ever intensifying caregiving activity in terms of a 'journey'. In doing so, this work takes into account both the patient's continuing bodily as well as cognitive decline and its intricately linked influence on the caregiver's physical and emotional stability. Equally, this study investigates how caregivers portray memory loss, and how their portrayal fits into our conceptualisation of illness narratives and the culture of autobiographical writing. PMID:23728880

  16. Anticipatory Grief in New Family Caregivers of Persons with Mild Cognitive Impairment and Dementia

    PubMed Central

    Garand, Linda; Lingler, Jennifer H.; Deardorf, Kaitlyn E.; DeKosky, Steven T.; Schulz, Richard; Reynolds, Charles F.; Dew, Mary Amanda

    2011-01-01

    Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer’s Disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosis) is unknown. Using a cross-sectional design, we examined differences in the nature and extent of anticipatory grief between family caregivers of persons with a new diagnosis of mild cognitive impairment (MCI, n=43) or AD (n=30). We also determined whether anticipatory grief levels were associated with caregiver demographics, caregiving burden, depressive symptoms and marital quality. Mean anticipatory grief levels were high in the total sample, with AD caregivers endorsing significantly more anticipatory grief than MCI caregivers. In general, AD caregivers endorsed difficulty functioning whereas MCI caregivers focused on themes of “missing the person” they once knew. Being a female caregiver, reporting higher levels of objective caregiving burden and higher depression levels each bore independent, statistically significant relationships with anticipatory grief. Given these findings, family caregivers of individuals with mild cognitive deficits or a new AD diagnosis may benefit from interventions specifically addressing anticipatory grief. PMID:21946013

  17. Cross-cultural study comparing the association of familism with burden and depressive symptoms in two samples of Hispanic dementia caregivers.

    PubMed

    Losada, A; Robinson Shurgot, G; Knight, B G; Márquez, M; Montorio, I; Izal, M; Ruiz, M A

    2006-01-01

    Familism has been pointed out as a key value in Hispanic culture that may or may not be associated with caregiver distress. Although groups included in the Hispanic identity have many common features, differences between Hispanic sub-groups in the relationship of familism with burden and depressive symptoms remain unexplored. The association of familism with burden and depressive symptomatology was examined in 48 Hispanic dementia caregivers from Los Angeles (CA, USA) and 60 from Madrid (Spain) through path analyses. Burden and depressive symptomatology were positively and significantly related in both samples. Familism was significantly correlated with lesser burden in the USA Hispanic caregiver sample, but with higher levels of depressive symptoms in the Spanish sample. Significant differences between Hispanic samples were found in the relationship between familism, burden, and depression, denoting the importance of specific cultural contexts influencing dementia caregiving in Hispanics. PMID:16338817

  18. 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

  19. 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

  20. Clinical Utility of Amyloid PET Imaging in the Differential Diagnosis of Atypical Dementias and Its Impact on Caregivers.

    PubMed

    Bensaïdane, Mohamed Reda; Beauregard, Jean-Mathieu; Poulin, Stéphane; Buteau, François-Alexandre; Guimond, Jean; Bergeron, David; Verret, Louis; Fortin, Marie-Pierre; Houde, Michèle; Bouchard, Rémi W; Soucy, Jean-Paul; Laforce, Robert

    2016-04-18

    Recent studies have supported a role for amyloid positron emission tomography (PET) imaging in distinguishing Alzheimer's disease (AD) pathology from other pathological protein accumulations leading to dementia. We investigated the clinical utility of amyloid PET in the differential diagnosis of atypical dementia cases and its impact on caregivers. Using the amyloid tracer 18F-NAV4694, we prospectively scanned 28 patients (mean age 59.3 y, s.d. 5.8; mean MMSE 21.4, s.d. 6.0) with an atypical dementia syndrome. Following a comprehensive diagnostic workup (i.e., history taking, neurological examination, blood tests, neuropsychological evaluation, MRI, and FDG-PET), no certain diagnosis could be arrived at. Amyloid PET was then conducted and classified as positive or negative. Attending physicians were asked to evaluate whether this result led to a change in diagnosis or altered management. They also reported their degree of confidence in the diagnosis. Caregivers were met after disclosure of amyloid PET results and completed a questionnaire/interview to assess the impact of the scan. Our cohort was evenly divided between positive (14/28) and negative (14/28) 18F-NAV4694 cases. Amyloid PET resulted in a diagnostic change in 9/28 cases (32.1%: 17.8% changed from AD to non-AD, 14.3% from non-AD to AD). There was a 44% increase in diagnostic confidence. Altered management occurred in 71.4% (20/28) of cases. Knowledge of amyloid status improved caregivers' outcomes in all domains (anxiety, depression, disease perception, future anticipation, and quality of life). This study suggests a useful additive role for amyloid PET in atypical cases with an unclear diagnosis beyond the extensive workup of a tertiary memory clinic. Amyloid PET increased diagnostic confidence and led to clinically significant alterations in management. The information gained from that test was well received by caregivers and encouraged spending quality time with their loved ones. PMID:27104896

  1. Too much of a good thing?: Positive religious coping predicts worse diurnal salivary cortisol patterns for overwhelmed African-American female dementia family caregivers

    PubMed Central

    Merritt, Marcellus M.; McCallum, T. J.

    2012-01-01

    Objectives Religious coping arguably prevents negative health outcomes for stressed persons. This study examined the moderating role of religious coping (positive, negative, and combined) in the connection of care recipient functional status with diurnal salivary cortisol patterns among dementia family caregivers. Methods Thirty African-American (AA) female dementia caregivers and 48 AA noncaregivers completed the Religious Coping (RCOPE) scale, Activities of Daily Living (ADL) scale and Revised Memory and Behavior Problem checklist (RMBPC) and collected five saliva samples daily (at awakening, 9am, 12pm, 5pm, and 9pm) for two straight days. Results Hierarchical regression tests with mean diurnal cortisol slope as the outcome illustrated surprisingly that higher combined and positive (but not negative) RCOPE scores were associated with increasingly flatter or worse cortisol slope scores for caregivers (but not non-caregivers). Of note, the RCOPE by RMBPC interaction was significant. Among caregivers who reported higher RMBPC scores, higher combined and positive (but not negative) RCOPE scores were unexpectedly associated with increasingly flatter cortisol slopes. Conclusions These results extend current findings by showing that being AA, a caregiver, and high in positive religious coping may predict increased daily stress responses, mainly for those with higher patient behavioral problems. Since religious coping is a central coping strategy for AA caregivers, it is vital that epidemiological assessments of religious coping in health and aging as well as tailored interventions focus on the unique reasons for this disparity. PMID:23290202

  2. Assessment of Depression in Dementia Patients: Association of Caregiver Mood with Depression Ratings.

    ERIC Educational Resources Information Center

    Teri, Linda; Truax, Paula

    1994-01-01

    Primary caregivers (n=41) of memory-impaired patients rated a standardized stimulus of depression and their actual patient. They were able to correctly identify depression in both. Further, their mood was unassociated with video ratings and only moderately associated with patient ratings. The findings support reliance on caregiver input.…

  3. Anger and Depression Management: Psychoeducational Skill Training Interventions for Women Caregivers of a Relative with Dementia

    ERIC Educational Resources Information Center

    Coon, David W.; Thompson, Larry; Steffen, Ann; Sorocco, Kristen; Gallagher-Thompson, Dolores

    2003-01-01

    Purpose: This study examines the short-term impact of two theoretically based psychoeducational small group interventions with distressed caregivers, and it also examines the role of specific moderator and mediator variables on caregiver outcomes. Design and Methods: Female participants (N = 169) aged 50 and older who were caring for a…

  4. Chronic Grief Management for Dementia Caregivers in Transition: Intervention Development and Implementation

    PubMed Central

    Paun, Olimpia; Farran, Carol J.

    2013-01-01

    Research reveals that Alzheimer’s disease (AD) caregivers (CGs) do not relinquish their role after placing a family member in long-term care. Caregivers report increased emotional upset around the time of placement, with sustained losses over time leading to chronic grief. Chronic grief increases caregivers’ risk for depression and suicide. There are no documented interventions designed to decrease CGs chronic grief post placement. The Chronic Grief Management Intervention (CGMI) builds on existing evidence to target caregiver chronic grief in the transition of a family member into long-term care. The intervention is structured into three major components: 1) knowledge, 2) skill in communication and conflict resolution, and 3) chronic grief mangement skill. The 12-week intervention was pilot tested with thirty four caregivers for feasibility and preliminary effects on caregiver skill, knowledge, chronic grief, and depression. This article presents a general study description while focusing on the development and implementation of the CGMI. PMID:22084962

  5. Preliminary Data from the Caring for Older Adults and Caregivers at Home (COACH) Program: A Care Coordination Program for Home-Based Dementia Care and Caregiver Support in a Veterans Affairs Medical Center.

    PubMed

    D'Souza, Maria F; Davagnino, Judith; Hastings, S Nicole; Sloane, Richard; Kamholz, Barbara; Twersky, Jack

    2015-06-01

    Caring for Older Adults and Caregivers at Home (COACH) is an innovative care coordination program of the Durham Veteran's Affairs Medical Center in Durham, North Carolina, that provides home-based dementia care and caregiver support for individuals with dementia and their family caregivers, including attention to behavioral symptoms, functional impairment, and home safety, on a consultation basis. The objectives of this study were to describe the COACH program in its first 2 years of operation, assess alignment of program components with quality measures, report characteristics of program participants, and compare rates of placement outside the home with those of a nontreatment comparison group using a retrospective cohort design. Participants were community-dwelling individuals with dementia aged 65 and older who received primary care in the medical center's outpatient clinics and their family caregivers, who were enrolled as dyads (n = 133), and a control group of dyads who were referred to the program and met clinical eligibility criteria but did not enroll (n = 29). Measures included alignment with Dementia Management Quality Measures and time to placement outside the home during 12 months of follow-up after referral to COACH. Results of the evaluation demonstrated that COACH aligns with nine of 10 clinical process measures identified using quality measures and that COACH delivers several other valuable services to enhance care. Mean time to placement outside the home was 29.6 ± 14.3 weeks for both groups (P = .99). The present study demonstrates the successful implementation of a home-based care coordination intervention for persons with dementia and their family caregivers that is strongly aligned with quality measures. PMID:26032224

  6. Partial mediation role of self-efficacy between positive social interaction and mental health in family caregivers for dementia patients in Shanghai.

    PubMed

    Zhang, Shuying; Edwards, Helen; Yates, Patsy; Guo, Qihao; Li, Chunbo

    2013-01-01

    We explored the mediation effect of caregiver self-efficacy on the influences of behavioral and psychological symptoms (BPSD) of dementia care recipients (CRs) or family caregivers' (CGs) social supports (informational, tangible and affectionate support and positive social interaction) on CGs' mental health. We interviewed 196 CGs, using a battery of measures including demographic data of the dyads, CRs' dementia-related impairments, and CGs' social support, self-efficacy and the Medical Outcome Study (MOS) Short-Form (SF-36) Health Survey. Multiple regression analyses showed that gathering information on self-efficacy and managing CG distress self-efficacy were the partial mediators of the relationship between positive social interaction and CG mental health. Managing caregiving distress self-efficacy also partial mediated the impact of BPSD on CG mental health. We discuss implications of the results for improving mental health of the target population in mainland China. PMID:24386178

  7. Dementia

    MedlinePlus

    ... Dementia may also cause changes in mood and personality. Early on, lapses in memory and clear thinking ... to tears to anger in a few minutes. Personality changes. People who have dementia may have drastic ...

  8. Renewing everyday hope: the hope experience of family caregivers of persons with dementia.

    PubMed

    Duggleby, Wendy; Williams, Allison; Wright, Karen; Bollinger, Sue

    2009-08-01

    The purpose of this grounded theory study was to explore the experience of hope for family members caring for a person with dementia. Seventeen family members caring for persons with dementia were interviewed. The participants described their hope as the possibility of a positive future within their daily lives and in the social context of grief and loss, stress, fatigue, and constantly dealing with challenging behaviours of the person with dementia. The main concern of the study participants was "fading hope," which they dealt with by "renewing every day hope" through (a) coming to terms, (b) finding positives, and (c) seeing possibilities. PMID:19591026

  9. Effectiveness of a psychoeducational skill training DVD program to reduce stress in Chinese American dementia caregivers: results of a preliminary study.

    PubMed

    Gallagher-Thompson, Dolores; Wang, Peng-Chih; Liu, Weiling; Cheung, Vinnie; Peng, Rebecca; China, Danielle; Thompson, Larry W

    2010-04-01

    Prior research (Gallagher-Thompson, D., Gray, H., Tang, P., Pu, C.-Y., Tse, C., Hsu, S., et al. (2007). Impact of in-home intervention versus telephone support in reducing depression and stress of Chinese caregivers: Results of a pilot study. American Journal of Geriatric Psychiatry, 15, 425-434.) found that an in-home behavioral management program, derived conceptually from cognitive behavioral theories (CBT), was effective in reducing caregiver related stress and depressive symptoms in Chinese American dementia caregivers (CGs). Results were promising, but a more cost-effective intervention is needed to serve this growing population. Past work also found that a psychoeducational videotaped training program based on CBT was effective in reducing stress due to caregiving in Caucasian and African American dementia family CGs (Steffen, 2000, Anger management for dementia caregivers: A preliminary study using video and telephone interventions. Behavior Therapy, 31, 281-299.). To date no research has been conducted using a technological medium to deliver a similar kind of intervention to Chinese American caregivers. The present study evaluated the effectiveness of a similar but culturally "tailored" program in which 70 CGs were randomly assigned to a 12-week CBT skill training program delivered on a DVD, or to a general educational DVD program on dementia. Both were available in Mandarin Chinese or English as preferred. Pre post change analyses indicated that CGs did not differ on change in level of negative depressive symptoms, but positive affect was higher, and patient behaviors were appraised as less stressful and bothersome, for CGs in the CBT skill training program. They were also more satisfied with the program overall and reported that they believed they were able to give care more effectively. Results encourage further development of theoretically based interventions, delivered using modern technology, for this ever increasing group of CGs. PMID:20425645

  10. Dementia

    MedlinePlus

    ... dementia have serious problems with two or more brain functions, such as memory and language. Although dementia is common in very elderly people, it is not part of normal aging. Many ... dementia or repair brain damage, they may improve symptoms or slow down ...

  11. Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial.

    PubMed

    Gitlin, Laura N; Piersol, Catherine Verrier; Hodgson, Nancy; Marx, Katherine; Roth, David L; Johnston, Deidre; Samus, Quincy; Pizzi, Laura; Jutkowitz, Eric; Lyketsos, Constantine G

    2016-07-01

    Among over 5million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS. PMID:27339865

  12. A randomized clinical trial of Behavioral Activation (BA) therapy for improving psychological and physical health in dementia caregivers: results of the Pleasant Events Program (PEP).

    PubMed

    Moore, Raeanne C; Chattillion, Elizabeth A; Ceglowski, Jennifer; Ho, Jennifer; von Känel, Roland; Mills, Paul J; Ziegler, Michael G; Patterson, Thomas L; Grant, Igor; Mausbach, Brent T

    2013-10-01

    Dementia caregiving is associated with elevations in depressive symptoms and increased risk for cardiovascular diseases (CVD). This study evaluated the efficacy of the Pleasant Events Program (PEP), a 6-week Behavioral Activation intervention designed to reduce CVD risk and depressive symptoms in caregivers. One hundred dementia family caregivers were randomized to either the 6-week PEP intervention (N = 49) or a time-equivalent Information-Support (IS) control condition (N = 51). Assessments were completed pre- and post-intervention and at 1-year follow-up. Biological assessments included CVD risk markers Interleukin-6 (IL-6) and D-dimer. Psychosocial outcomes included depressive symptoms, positive affect, and negative affect. Participants receiving the PEP intervention had significantly greater reductions in IL-6 (p = .040), depressive symptoms (p = .039), and negative affect (p = .021) from pre- to post-treatment. For IL-6, clinically significant improvement was observed in 20.0% of PEP participants and 6.5% of IS participants. For depressive symptoms, clinically significant improvement was found for 32.7% of PEP vs 11.8% of IS participants. Group differences in change from baseline to 1-year follow-up were non-significant for all outcomes. The PEP program decreased depression and improved a measure of physiological health in older dementia caregivers. Future research should examine the efficacy of PEP for improving other CVD biomarkers and seek to sustain the intervention's effects. PMID:23916631

  13. Caregiver care.

    PubMed

    Collins, Lauren G; Swartz, Kristine

    2011-06-01

    In 2009, nearly 66 million Americans (three in 10 U.S. households) reported at least one person providing unpaid care as a family caregiver. More adults with chronic conditions and disabilities are living at home than ever before, and family caregivers have an even higher level of responsibility. Caring for loved ones is associated with several benefits, including personal fulfillment. However, caregiving is also associated with physical, psychological, and financial burdens. Primary care physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of caregiver or care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local area agencies on aging, Web sites, and respite care. Psychoeducational, skills-training, and therapeutic counseling interventions for caregivers of patients with chronic conditions such as dementia, cancer, stroke, and heart failure have shown small to moderate success in decreasing caregiver burden and increasing caregiver quality of life. Further research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Additional support and anticipatory guidance for the care recipient and caregiver are particularly helpful during care transitions and at the care recipient's end of life. PMID:21661713

  14. The cost-effectiveness of a family meetings intervention to prevent depression and anxiety in family caregivers of patients with dementia: a randomized trial

    PubMed Central

    2013-01-01

    Background Dementia imposes a heavy burden on health and social care systems as well as on family caregivers who provide a substantial portion of the care. Interventions that effectively support caregivers may prevent or delay patient institutionalization and hence be cost-effective. However, evidence about the cost-effectiveness of such interventions is scarce. The aim of this study was to evaluate the cost-effectiveness of a family meetings intervention for family caregivers of dementia patients in comparison with usual care over a period of 12 months. Methods The economic evaluation was conducted from a societal perspective alongside a randomized trial of 192 primary caregivers with community-dwelling dementia patients. Outcome measures included the Quality Adjusted Life-Years (QALY) of caregivers and patients and the incidence of depression and anxiety disorders in caregivers. Missing cost and effect data were imputed using multiple imputations. Bootstrapping was used to estimate uncertainty around the cost-differences and the incremental cost-effectiveness ratio (ICER). The bootstrapped cost-effect pairs were plotted on a cost-effectiveness plane and used to estimate cost-effectiveness curves. Results No significant differences in costs and effects between the groups were found. At 12 months, total costs per patient and primary caregiver dyad were substantial: €77,832 for the intervention group and €75,201 for the usual care group (adjusted mean difference per dyad €4,149, 95% CI -13,371 to 21,956, ICER 157,534). The main cost driver was informal care (66% of total costs), followed by patients’ day treatment and costs of hospital and long-term care facility admissions (23%). Based on the cost-effectiveness acceptability curves, the maximum probability that the intervention was considered cost-effective in comparison with usual care reached 0.4 for the outcome QALY per patient-caregiver dyad and 0.6 for the caregivers’ incidence of depression and

  15. Dementia

    MedlinePlus

    ... agitated or see things that are not there. Memory loss is a common symptom of dementia. However, memory loss by itself does not mean you have ... with two or more brain functions, such as memory and language. Although dementia is common in very ...

  16. [Interventions and their effects on informal caregivers of people with dementia: a systematic literature review].

    PubMed

    Mantovan, Franco; Ausserhofer, Dietmar; Huber, Markus; Schulc, Eva; Them, Christa

    2010-08-01

    In home-care situations, the caring family members of people suffering from dementia are exposed to a great number of physical, mental and social burdens, and restrictions, putting themselves at risk of falling ill. Caring family members need adequate forms of relief in order to be able to care for the family member at home for as long as possible, and with the best possible physical and psychological status. In the present paper, interventions of relief and promotion and their effects on family members caring for dementia patients have been investigated and described on the basis of a systematic literature review. The presentation of the results shows that psycho-educational, relieving, supportive, psychotherapeutic and multimodal offers as well as counselling and case/care management among caring family members have significant effects on parameters such as burdens, level of depression, subjective well-being, skills/knowledge as well as symptoms and institutionalisation of the person in need of care. None of the interventions investigated, however, covers the entire range of parameters. In order to be able to ensure the individual support of caring family members, a superordinate organisational concept (case/care management, family health nursing) which meets the needs of the caring family members, combines and interlinks tailor-made offers for caring family members is required. Registered nurses could play a central role as care managers or family health nurses in ensuring home-based care for people with dementia. Further investigations on multimodal offers and case/care management are needed. In this context, it is essential to take well-considered decisions on study design, sample size, and result parameters (assessment instruments) in order to gain significant results and homogeneous data. PMID:20687035

  17. Correlates of Quality of Life for Individuals with Dementia Living at Home: The Role of Home Environment, Caregiver, and Patient-related Characteristics

    PubMed Central

    Gitlin, Laura N.; Hodgson, Nancy; Piersol, Catherine Verrier; Hess, Edward; Hauck, Walter W.

    2014-01-01

    Objectives To examine prevalence of modifiable risk factors and their contribution to patient quality of life (QoL) as rated by dementia patients and family caregivers. Design Cross-sectional. Setting Home environment. Participants 88 patients and their caregivers. Measurements Modifiable characteristics of home environments, patients, and caregivers were observed or obtained through interview. Demographics and ratings of patients’ QoL were obtained from patients and caregivers. Results Patients had mean Mini-mental Status Examination (MMSE) score = 17.7 ± 4.6, (range: 10 28) on an average 7.7 ± 2.4 neuropsychiatric behaviors, 6.0 ± 3.1 health conditions and moderate functional challenges; 70.7% (N = 58) had fall risk; 60.5% (N = 52) had sleep problems at least once weekly; and 42.5% (N = 37) had pain. An average of 8.1 ± 5.2 home hazards and 5.4 ± 4.1 adaptations were observed; 51.7% had unmet device/navigation needs. Patients’ and caregivers’ QoL ratings were unrelated to MMSE; and patients’ self-rated QoL was higher than rated by caregivers. Number of health conditions and unmet device/navigation needs were inversely associated with patient self-rated QoL, and number of health conditions, frequency of behaviors, and level of negative communications were inversely associated with caregiver’s assessment of patient QoL. Positive endorsement of caregiving was positively associated with caregiver’s appraisal of patient QoL. Other factors were unrelated. Conclusions Most patients lived at home with high fall risk, unmanaged behavioral symptoms, pain, sleep disturbances, environmental challenges, and multiple hazards. Except for health, factors associated with lower QoL differed for patients and caregivers. Results suggest need to improve QoL by addressing modifiable risk factors and tailoring interventions to patient and caregiver perspectives. PMID:23890928

  18. Dementia

    PubMed Central

    2012-01-01

    Introduction Dementia is characterised by chronic, global, non-reversible deterioration in memory, executive function, and personality. Speech and motor function may also be impaired. Methods and outcomes We conducted a systematic review and aimed to answer the following clinical questions: What are the effects of treatments on cognitive symptoms of dementia (Alzheimer's, Lewy body, or vascular)? What are the effects of treatments on behavioural and psychological symptoms of dementia (Alzheimer's, Lewy body, or vascular)? We searched: Medline, Embase, The Cochrane Library, and other important databases up to July 2011 (Clinical Evidence reviews are updated periodically; please check our website for the most up-to-date version of this review). We included harms alerts from relevant organisations such as the US Food and Drug Administration (FDA) and the UK Medicines and Healthcare products Regulatory Agency (MHRA). Results We found 49 systematic reviews, RCTs, or observational studies that met our inclusion criteria. We performed a GRADE evaluation of the quality of evidence for interventions. Conclusions In this systematic review, we present information relating to the effectiveness and safety of the following interventions: acetylcholinesterase inhibitors (donepezil, galantamine, rivastigmine), antidepressants (clomipramine, fluoxetine, imipramine, sertraline), antipsychotics (haloperidol, olanzapine, quetiapine, risperidone), aromatherapy, benzodiazepines (diazepam, lorazepam), cognitive behavioural therapy (CBT), cognitive stimulation, exercise, ginkgo biloba, memantine, mood stabilisers (carbamazepine, sodium valproate/valproic acid), music therapy, non-steroidal anti-inflammatory drugs (NSAIDs), omega 3 (fish oil), reminiscence therapy, and statins. PMID:23870856

  19. Dementia

    PubMed Central

    2010-01-01

    Introduction Dementia is characterised by chronic, global, non-reversible deterioration in memory, executive function, and personality. Speech and motor function may also be impaired. Methods and outcomes We conducted a systematic review and aimed to answer the following clinical question: What are the effects of treatments on cognitive symptoms of dementia (Alzheimer's, Lewy body, or vascular)? What are the effects of treatments on behavioural and psychological symptoms of dementia (Alzheimer's, Lewy body, or vascular)? We searched: Medline, Embase, The Cochrane Library, and other important databases up to April 2008 (Clinical Evidence reviews are updated periodically; please check our website for the most up-to-date version of this review). We included harms alerts from relevant organisations such as the US Food and Drug Administration (FDA) and the UK Medicines and Healthcare products Regulatory Agency (MHRA). Results We found 33 systematic reviews, RCTs, or observational studies that met our inclusion criteria. We performed a GRADE evaluation of the quality of evidence for interventions. Conclusions In this systematic review, we present information relating to the effectiveness and safety of the following interventions: acetylcholinesterase inhibitors (donepezil, galantamine, rivastigmine), antidepressants (clomipramine, fluoxetine, imipramine, sertraline), antipsychotics (haloperidol, olanzapine, quetiapine, risperidone), aromatherapy, benzodiazepines (diazepam, lorazepam), cognitive behavioural therapy (CBT), cognitive stimulation, exercise, ginkgo biloba, memantine, mood stabilisers (carbamazepine, sodium valproate/valproic acid), music therapy, non-steroidal anti-inflammatory drugs (NSAIDs), omega 3 (fish oil), reminiscence therapy, and statins. PMID:21726471

  20. A pilot study of yogic meditation for family dementia caregivers with depressive symptoms: Effects on mental health, cognition, and telomerase activity

    PubMed Central

    Lavretsky, H.; Siddarth, P.; Nazarian, N.; St. Cyr, N.; Khalsa, D.S.; Lin, J.; Blackburn, E.; Epel, E.S.; Irwin, M. R.

    2012-01-01

    BACKGROUND This study examined the effects of brief daily yogic meditation on mental health, cognitive functioning, and immune cell telomerase activity in family dementia caregivers with mild depressive symptoms. METHODS Thirty-nine family dementia caregivers (mean age 60.3 years old (SD=10.2)) were randomized to practicing Kirtan Kriya or listening to relaxation music for 12 minutes per day for eight weeks. The severity of depressive symptoms, mental and cognitive functioning were assessed at baseline and follow-up. Telomerase activity in peripheral blood mononuclear cells (PMBC) was examined in peripheral PBMC pre- and post-intervention. RESULTS The meditation group showed significantly lower levels of depressive symptoms and greater improvement in mental health and cognitive functioning compared to the relaxation group. In the meditation group, 65.2% showed 50% improvement on the Hamilton Depression Rating scale and 52% of the participants showed 50% improvement on the Mental Health Composite Summary score (MCS) of the SF-36 scale; compared to 31.2% and 19% respectively in the relaxation group (pp<0.05). The meditation group showed 43% improvement in telomerase activity compared to 3.7% in the relaxation group (p=0.05). CONCLUSION This pilot study found that brief daily meditation practices by family dementia caregivers can lead to improved mental and cognitive functioning, and lower levels of depressive symptoms. This improvement is accompanied by an increase in telomerase activity suggesting improvement in stress-induced cellular aging. These results need to be confirmed in a larger sample. PMID:22407663

  1. 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. PMID:24467810

  2. Role of Advance Care Planning in Proxy Decision Making Among Individuals With Dementia and Their Family Caregivers.

    PubMed

    Kwak, Jung; De Larwelle, Jessica A; Valuch, Katharine O'Connell; Kesler, Toni

    2016-03-01

    Health care proxies make important end-of-life decisions for individuals with dementia. A cross-sectional survey was conducted to examine the role of advance care planning in proxy decision making for 141 individuals with cognitive impairment, Alzheimer's disease, or other types of dementia. Proxies who did not know the preferences of individuals with dementia for life support treatments reported greater understanding of their values. Proxies of individuals with dementia who did not want life support treatments anticipated receiving less support and were more uncertain in decision making. The greater knowledge proxies had about dementia trajectory, family support, and trust of physicians, the more informed, clearer, and less uncertain they were in decision making. In addition to advance care planning, multiple factors influence proxy decision making, which should be considered in developing interventions and future research to support informed decision making for individuals with dementia and their families. [Res Gerontol Nurs. 2016; 9(2):72-80.]. PMID:26020579

  3. Recruiting Community-Based Dementia Patients and Caregivers in a Nonpharmacologic Randomized Trial: What Works and How Much Does It Cost?

    PubMed Central

    Morrison, Karen; Winter, Laraine; Gitlin, Laura N.

    2015-01-01

    Objectives The aim of this study was to evaluate the yield and cost of three recruitment strategies—direct mail, newspaper advertisements, and community outreach—for identifying and enrolling dementia caregivers into a randomized trial testing a nonpharmacologic approach to enhancing quality of life of patients and caregivers (dyads). Method Enrollment occurred between 2006 and 2008. The number of recruitment inquiries, number and race of enrollees, and costs for each recruitment strategy were recorded. Results Of 284 inquiries, 237 (83%) dyads enrolled. Total cost for recruitment across methodologies was US$154 per dyad. Direct mailings resulted in the most enrollees (n = 135, 57%) and was the least costly method (US$63 per dyad) compared with newspaper ads (US$224 per dyad) and community outreach (US$350 per dyad). Although enrollees were predominately White, mailings yielded the highest number of non-Whites (n = 37). Discussion Direct mailings was the most effective and least costly method for enrolling dyads in a nonpharmacologic dementia trial. PMID:24799354

  4. Primary caregivers' awareness and perception of early-onset dementia conditions in adolescents and young and middle-aged adults with Down syndrome.

    PubMed

    Lin, Jin-Ding; Chen, Wen-Xiu; Hsu, Shang-Wei; Lin, Lan-Ping; Lin, Fu-Gong; Tang, Chi-Chieh; Wu, Jia-Ling; Chu, Cordia; Chou, Yu-Ching

    2014-09-01

    The present study aims to investigate the onset of dementia conditions using the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) scale and to identify the possible factors associated with DSQIID scores in people with Down syndrome (DS). The study population was recruited from the voluntary registry members of the Republic of China Foundation for Persons with Down syndrome; primary caregivers provided DSQIID information on 196 adolescents and adults with DS (aged 15-48 years) who were entered into the database and analyzed using SPSS 20.0 software. The results described the distribution of early-onset dementia conditions in 53 adolescents and adults with DS, and 2.6% of the subjects with DS had possible dementia (DSQIID score ≧ 20). Univariate analyses found that older age (p=0.001) and comorbid conditions (p=0.003) were significantly associated with DSQIID scores. Older subjects were more likely to have higher DSQIID scores than were younger age groups after ANOVA and Scheffe's tests. Lastly, a multiple linear regression analysis revealed that age (p<0.01), severe disability level (p<0.05) and comorbid condition (p<0.01) significantly explained 13% of the variation in DSQIID scores after adjusting for the factors of gender, education level and multiple disabilities in adolescents and adults with DS. The study highlights that future research should focus on the occurrence of dementia in people with DS and on identifying its influencing factors based on sound measurements, to initiate appropriate healthy aging policies for this group of people. PMID:24858786

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

    PubMed

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

    2012-01-01

    The increase of dementia in older adults is changing how medical care is delivered. Recognizing symptoms of pain, managing behaviors, and providing quality of life for people who have advanced dementia requires a new skill set for caregivers. Researchers in this study targeted nurse aide students to test an educational module's effect on students' perceptions of dementia and their ability to care for patients with dementia. The results indicated the training was effective regarding nurse aides' understanding of residual cognitive abilities and need for meaningful contact among patients with advanced dementia; however, the training was not successful in terms of nurse aides' comfort level or perceived skills in working with this population of patients. The findings suggest a need to transform how caregivers are trained in communication techniques. Incorporating this training into nurse aide education has the potential to increase quality of life for people with dementia. PMID:23095223

  6. Measuring the Caregiver Burden of Caring for Community-Residing People with Alzheimer’s Disease

    PubMed Central

    Yu, Hongmei; Wang, Xiaocheng; He, Runlian; Liang, Ruifeng; Zhou, Liye

    2015-01-01

    Objectives To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer’s disease (AD). Methods We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients’ Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers’ level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors. Results A lower level of cognitive function in patients (r = −0.28, p<0.001) and longer hours of caregiving (r = 0.17, p = 0.019) were related to increased caregiver burden. Greater social support (r = −0.23, p<0.001), family function (r = −0.17, p = 0.015) and caregiving experience (r = −0.16, p = 0.012) were related to decreased caregiver burden. Social support (r = 0

  7. Discrepancies in Cornell Scale for Depression in Dementia (CSDD) items between residents and caregivers, and the CSDD’s factor structure

    PubMed Central

    Wongpakaran, Nahathai; Wongpakaran, Tinakon; van Reekum, Robert

    2013-01-01

    Purpose This validation study aims to examine Cornell Scale for Depression in Dementia (CSDD) items in terms of the agreement found between residents and caregivers, and also to compare alternative models of the Thai version of the CSDD. Patients and methods A cross-sectional study was conducted of 84 elderly residents (46 women, 38 men, age range 60–94 years) in a long-term residential home setting in Thailand between March and June 2011. The selected residents went through a comprehensive geriatric assessment that included use of the Mini-Mental State Examination, Mini-International Neuropsychiatric Interview, and CSDD instruments. Intraclass correlation (ICC) was calculated in order to establish the level of agreement between the residents and caregivers, in light of the residents’ cognitive status. Confirmatory factor analysis (CFA) was adopted to evaluate the alternative CSDD models. Results The CSDD yielded a high internal consistency (Cronbach’s alpha = 0.87) and moderate agreement between residents and caregivers (ICC = 0.55); however, it was stronger in cognitively impaired subjects (ICC = 0.71). CFA revealed that there was no difference between the four-factor model, in which factors A (mood-related signs) and E (ideational disturbance) were collapsed into a single factor, and the five-factor model as per the original theoretical construct. Both models were found to be similar, and displayed a poor fit. Conclusion The CSDD demonstrated a moderate level of interrater agreement between residents and caregivers, and was more reliable when used with cognitively impaired residents. CFA indicated a poorly fitting model in this sample. PMID:23766640

  8. Integrated Source Case Investigation for Tuberculosis (TB) and HIV in the Caregivers and Household Contacts of Hospitalised Young Children Diagnosed with TB in South Africa: An Observational Study

    PubMed Central

    Lala, Sanjay G.; Little, Kristen M.; Tshabangu, Nkeko; Moore, David P.; Msandiwa, Reginah; van der Watt, Martin; Chaisson, Richard E.; Martinson, Neil A.

    2015-01-01

    Background Contact tracing, to identify source cases with untreated tuberculosis (TB), is rarely performed in high disease burden settings when the index case is a young child with TB. As TB is strongly associated with HIV infection in these settings, we used source case investigation to determine the prevalence of undiagnosed TB and HIV in the caregivers and household contacts of hospitalised young children diagnosed with TB in South Africa. Methods Caregivers and household contacts of 576 young children (age ≤7 years) with TB diagnosed between May 2010 and August 2012 were screened for TB and HIV. The primary outcome was the detection of laboratory-confirmed, newly-diagnosed TB disease and/or HIV-infection in close contacts. Results Of 576 caregivers, 301 (52·3%) self-reported HIV-positivity. Newly-diagnosed HIV infection was detected in 63 (22·9%) of the remaining 275 caregivers who self-reported an unknown or negative HIV status. Screening identified 133 (23·1%) caregivers eligible for immediate anti-retroviral therapy (ART). Newly-diagnosed TB disease was detected in 23 (4·0%) caregivers. In non-caregiver household contacts (n = 1341), the prevalence of newly-diagnosed HIV infection and TB disease was 10·0% and 3·2% respectively. On average, screening contacts of every nine children with TB resulted in the identification of one case of newly-diagnosed TB disease, three cases of newly diagnosed HIV-infection, and three HIV-infected persons eligible for ART. Conclusion In high burden countries, source case investigation yields high rates of previously undiagnosed HIV and TB infection in the close contacts of hospitalised young children diagnosed with TB. Furthermore, integrated screening identifies many individuals who are eligible for immediate ART. Similar studies, with costing analyses, should be undertaken in other high burden settings–integrated source case investigation for TB and HIV should be routinely undertaken if our findings are confirmed

  9. 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…

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

    PubMed

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

    2016-01-01

    Home health care agencies are increasingly taking care of sicker, older patients with greater comorbidities. However, they are unequipped to appropriately manage these older adults, particular persons living with dementia (PLWD). We therefore developed the Dementia Symptom Management at Home (DSM-H) Program, a bundled interprofessional intervention, to improve the care confidence of providers, and quality of care delivered to PLWD and their caregivers. We implemented the DSM-H with 83 registered nurses, physical therapists, and occupational therapists. Overall, there was significant improvement in pain knowledge (5.9%) and confidence (26.5%), depression knowledge (14.8%) and confidence (36.1%), and neuropsychiatric symptom general knowledge (16.8%), intervention knowledge (20.9%), attitudes (3.4%) and confidence (27.1%) at a statistical significance of (P < .0001). We also found significant differences between disciplines. Overall, this disseminable program proved to be implementable and improve clinician's knowledge and confidence in caring for PLWD, with the potential to improve quality of care and quality of life, and decrease costs. PMID:26922312

  11. Synchronized communication between people with dementia and their volunteer caregivers. A video-based explorative study on temporal aspects of interaction and the transfer to education.

    PubMed

    Jost, A; Neumann, E; Himmelmann, K-H

    2010-08-01

    Processes of demographic change are leading to decreasing human resources in professional as well as lay care; this decrease necessitates new concepts of care, especially for the growing number of people with dementia (p.w.d.). Since the amendment to the German Care Insurance Law (2002), family carers have been entitled to regular weekly relief, provided by volunteers who have been given a thirty-hour-training. As difficulties in information processing in p.w.d. form an important part of the symptoms in dementia sufferers--with a high impact on communication as well as competent functioning in activities associated with daily life, we wanted to establish how much awareness and sensitivity voluntary attendants show in "tuning in" to the p.w.d. and her/his individual capacity to interact. In an exploratory study the authors analyzed videotaped interactions between volunteer caregivers and dementia-sufferers which were recorded in everyday situations during the process of ongoing care. Using methods of Video Interaction Analysis and Grounded Theory, we developed categories which describe how in tune the helpers are with the timing skills--or lack of them--of p.w.d.. We think that understanding the different ways in which p.w.d. structure their time can improve their communication and interaction. The categories --"speed and adjustment of speed", "mutuality" and "time control"--seemed crucial in understanding the subsequent course of the interactions. In a second step, these categories have recently been used by students and staff of the Lausitz University of Applied Sciences to provide training that sensitizes volunteer attendants to the topic and to learn about volunteers; judgement on the importance of continuing education in this field. PMID:20043817

  12. 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

  13. 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…

  14. 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…

  15. 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…

  16. Targeting and Managing Behavioral Symptoms in Individuals with Dementia: A Randomized Trial of a Nonpharmacologic Intervention

    PubMed Central

    Gitlin, Laura N.; Winter, Laraine; Dennis, Marie P.; Hodgson, Nancy; Hauck, Walter W.

    2010-01-01

    Objectives Test effects of an intervention that helps families manage distressful behaviors. Design Two-group randomized trial Setting In-home Participants 272 caregivers and dementia patients Intervention Up to 11 home/telephone contacts over 16-weeks by health professionals who identified potential triggers of patient behaviors including communication, environment, patient undiagnosed medical conditions (by obtaining blood/urine samples), and trained caregivers in strategies to modify triggers and reduce caregiver upset. Between 16–24 weeks, 3 telephone contacts reinforced strategy use. Measurements Primary outcomes included frequency of targeted problem behavior, and caregiver upset with and confidence managing it at 16-weeks. Secondary outcomes included caregiver well-being and management skills at 16 and 24 weeks, and caregiver perceived benefits. Prevalence of medical conditions for intervention patients were also examined. Results At 16 weeks, 67.5% of intervention caregivers reported patient improvement in targeted problem behavior compared to 45.8% of caregivers in a no-treatment control group (p=.002), reduced upset with (p=.028) and enhanced confidence managing (p=.011) the behavior. Additionally, compared to controls, intervention caregivers reported less upset with all problem behaviors (p=.001), negative communication (p=.017), burden (p=.051), and improved well-being (p=.001). Fewer intervention caregivers had depressive symptoms (53.0%) than control group caregivers (67.8%, p=.020). Similar caregiver outcomes occurred at 24-weeks. Compared to controls, intervention caregivers perceived more study benefits (p values <.05) including ability to keep patients home. Blood/urine samples of intervention patients showed 40 (34.1%) had undiagnosed illnesses requiring physician follow-up. Conclusion Targeting behaviors upsetting to caregivers and modifying potential triggers improves patient symptomatology and caregiver well-being and skills. PMID:20662955

  17. Reviewing the definition of crisis in dementia care

    PubMed Central

    2013-01-01

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

  18. 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…

  19. 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…

  20. 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

  1. The needs of caregivers.

    PubMed

    Koffman, J; Taylor, S

    Caring for elderly mentally ill people impacts on many aspects of informal caregivers' lives. Respite care is one of the few strategies aimed directly at caregivers and its benefits have been well documented. As part of a wider strategy review of continuing care and respite care for the growing elderly population in an inner London health authority we focused specifically on the needs of caregivers and their elderly dependants with a diagnosis of dementia. A focus group was organised in order to elicit caregivers' perspectives on caring and their views on local services. This component of our overall review highlights the importance of investing further in informal caregivers who, to date, have successfully prevented a large number of admissions to continuing care facilities. PMID:9510693

  2. 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

  3. 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…

  4. Dementia and elder abuse.

    PubMed

    Hansberry, Maria R; Chen, Elaine; Gorbien, Martin J

    2005-05-01

    Dementia and elder abuse are relatively common and under-diagnosed geriatric syndromes. A unique relationship is observed when the two entities coexist. Special issues can confound the care of the dementia patient suspected of being abused. Impaired language or motor abilities to communicate abusive situations to a third party, lack of decisional capacity to address the abusive situation, disinhibited behavior that contributes to a cycle of violence, and coincident depression of the abused elder complicate the diagnosis and management of elder abuse. Education of the caregiver and attention to caregiver stress, including depression, may prevent onset and perpetuation of abuse. PMID:15804553

  5. [Apathy and Dementia].

    PubMed

    Okada, Kazunori; Yamaguchi, Shuhei

    2016-07-01

    Apathy, which has been attracting attention since Marin's report in 1990, is ubiquitous among neuropsychiatric diseases. It has a major impact on the quality of life in both patients and their caregivers and impairs rehabilitation and outcome. Furthermore, apathy is important as a prodromal syndrome in the development of dementia in mild cognitive impairment (MCI). We reviewed the neurobiological basis, prevalence and assessment of potential benefits of non-pharmacologic and pharmacologic interventions for apathy in MCI and dementia. PMID:27395461

  6. Use of the Tailored Activities Program to reduce neuropsychiatric behaviors in dementia: an Australian protocol for a randomized trial to evaluate its effectiveness

    PubMed Central

    O’Connor, C. M.; Clemson, L.; Brodaty, H.; Jeon, Y. H.; Mioshi, E.; Gitlin, L. N.

    2014-01-01

    Background Behavioral and psychological symptoms of dementia (BPSD) are often considered to be the greatest challenge in dementia care, leading to increased healthcare costs, caregiver burden, and placement into care facilities. With potential for pharmacological intervention to exacerbate behaviors or even lead to mortality, the development and rigorous testing of non-pharmacological interventions is vital. A pilot of the Tailored Activities Program (TAP) for reducing problem behaviors in people with dementia was conducted in the United States with promising results. This randomized trial will investigate the effectiveness of TAP for reducing the burden of BPSD on persons with dementia and family caregivers within an Australian population. This trial will also examine the cost-effectiveness and willingness to pay for TAP compared with a control group. Methods This randomized trial aims to recruit 180 participant dyads of a person with dementia and their caregivers. Participants will have a diagnosis of dementia, exhibit behaviors as scored by the Neuropsychiatric Inventory, and the caregiver must have at least 7 h per week contact. Participants will be randomly allocated to intervention (TAP) or control (phone-based education sessions) groups, both provided by a trained occupational therapist. Primary outcome measure will be the revised Neuropsychiatric Inventory – Clinician rating scale (NPI-C) to measure BPSD exhibited by the person with dementia. Conclusions This trial investigates the effectiveness and cost-effectiveness of TAP within an Australian population. Results will address a significant gap in the current Australian community-support base for people living with dementia and their caregivers. PMID:24507481

  7. 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

  8. [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. PMID:27276724

  9. 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.…

  10. Depression, psychosis, and dementia: impact on the family.

    PubMed

    Ellgring, J H

    1999-01-01

    Similar to the setting of other chronic, debilitating diseases, considerable psychoeducational support of the patient's family and other caregivers represents an often-overlooked component of appropriately thorough care. Nearly three of four persons caring for an individual with PD report psychological stress and anxiety, which are exacerbated by concerns about progression of the disease. Counseling for PD caregivers can be dispensed particularly effectively through individual psychological counseling as well as PD support and community self-help groups that assist caregivers in sharing concerns and promote a sense they are understood by others. Through such measures, which may be delivered effectively by nurse practitioners, PD caregivers can develop effective coping strategies for disease related stressors. Empirical results show the most common stressors are: anxiety, concern about the future, impatience or intolerance, loss of autonomy, sleep disturbances, diminished time and opportunity for recreation and social contact, and anger. These sequelae often ensue when the PD patient evidences depression, advanced dementia, or psychosis, each of which can severely constrain communication. Caregivers often must also contend with two other adverse psychological phenomena: cognitive dissonance surrounding placement of the patient in a nursing home and learned helplessness, which may predispose to depressive states. Other often unmet needs of the "hidden victims" of PD include compromised immune function, social stigmata, and financial difficulties. Respite care may be useful in reducing the stress associated with these and other problems frequently affecting caregivers. PMID:10227606

  11. 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 ...

  12. 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

  13. Caring for Caregivers: Bridging the Care Gap.

    PubMed

    Williams, A Paul; Peckham, Allie; Kuluski, Kerry; Lum, Janet; Morton-Chang, Frances

    2015-01-01

    While drawing on different perspectives, the insightful responses of our commentators all highlight the increasingly crucial role of informal, and mostly unpaid caregivers. They also raise key questions. The first question, "how should we refer to caregivers," pushes us to acknowledge the diversity of caregiver characteristics, contexts and roles. The second, "how should we understand the caregiver 'problem'," reminds us that although often thought of as an individual matter, caregiving is a public policy issue requiring broader systems thinking and approaches. The third, "what should we do about it," draws attention to the importance of building and strengthening social networks to support caregivers and bridge a "growing care gap." We offer the example of Japan which, as part of its national dementia care policy, is now encouraging the development of inter-generational dementia-friendly communities. PMID:26960243

  14. 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)

  15. Cultural Influences on Caregiving Burden: Cases of Koreans and Americans.

    ERIC Educational Resources Information Center

    Lee, Yoon-Ro; Sung, Kyu-Taik

    1998-01-01

    Compares cultural influences on caregiver burdens of Korean adult children and American adult children caring for parents with dementia. Identifies culturally specific values, norms, and customs associated with low or high burden. Findings show low burden for Korean caregivers and high burden for American caregivers. (MKA)

  16. Palliative care in advanced dementia.

    PubMed

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

    2014-08-01

    Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. PMID:25037291

  17. Coping with Caregiving: Take Care of Yourself While Caring for Others

    MedlinePlus

    ... can also create unique challenges to caregivers. The health care costs alone can take an enormous toll. One recent ... of online caregiving resources. References: The Burden of Health Care Costs for Patients with Dementia in the Last 5 ...

  18. [Psychosocial interventions and caregiver support].

    PubMed

    Hüll, M; Wernher, I

    2010-07-01

    Despite an increasing number of trials on the effects of psychosocial interventions in dementia, recommendations concerning these interventions are still based on limited evidence. The S3 dementia guidelines, initiated by the German associations of psychiatry and neurology (DGPPN and DGN), suggest the use of procedures including reality orientation, reminiscence, and cognitive stimulation at recommendation level C. Occupational therapy (including caregiver education), physical activation and music therapy are also suggested at recommendation level C. On a higher level of recommendation (level B), structured support of the caregiver is recommended. Based on the German healthcare system and depending on local structures, this may be offered at the medical office of a general practitioner, a specialist for neurology or psychiatry or at a memory clinic or an outpatient clinic. Furthermore, caregiver support is provided by local branches of the German Alzheimer Association. An increase in recent high level trials suggests an upcoming improvement of the evidence base for psychosocial interventions. PMID:20567961

  19. Dementia - home care

    MedlinePlus

    ... If they wander, their caregiver can contact the police and the national Safe Return office, where information ... M. is also a founding member of Hi-Ethics and subscribes to the principles of the Health ...

  20. Multi-Infarct Dementia

    MedlinePlus

    ... Funding Information Research Programs Training & Career Awards Enhancing Diversity Find People About NINDS NINDS Multi-Infarct Dementia ... News From NINDS | Find People | Training | Research | Enhancing Diversity Careers@NINDS | FOIA | Accessibility Policy | Contact Us | Privacy ...

  1. [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. PMID:23306213

  2. 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

  3. Caregiver Stress

    MedlinePlus

    ... 2005). Psychophysiological mediators of caregiver stress and differential cognitive decline . Psychology and Aging, 20 (3), 402–411. Pew Research ... 2005). Psychophysiological mediators of caregiver stress and differential cognitive decline . Psychology and Aging, 20 (3), 402–411. Return to ...

  4. Caregiving Statistics

    MedlinePlus

    ... more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental ... caregiving families. In every state and DC the poverty rate is higher among families with members with ...

  5. Needs of family caregivers in chronic schizophrenia.

    PubMed

    Winefield, H R; Harvey, E J

    1994-01-01

    The goals of the study were to describe (1) the tasks undertaken by people who care for a relative with chronic schizophrenia, according to their level of contact with the patient; and (2) any needs for further help that these caregivers might experience. Interviews and standardized questionnaires were used to collect information from 121 family caregivers whose relatives had been diagnosed an average of 14 years previously. Burden in the sense of interference in caregivers' daily lives was most marked for caregivers in high contact with the patients. Patients whom the caregivers regarded as enjoyable to live with had greater self-care and communication skills. Caregivers preferred that patients low in these skills or high in disruptive behavior live in supervised settings. Caregivers expressed particular support for earlier professional intervention in episodes of illness, information about how to lobby politicians for resources, and information about schizophrenia. These results can be used to plan interventions to reduce caregiver stress. PMID:7973471

  6. Depression associated with dementia.

    PubMed

    Gutzmann, H; Qazi, A

    2015-06-01

    Depression and cognitive disorders, including dementia and mild cognitive impairment, are common disorders in old age. Depression is frequent in dementia, causing distress, reducing the quality of life, exacerbating cognitive and functional impairment and increasing caregiver stress. Even mild levels of depression can significantly add to the functional impairment of dementia patients and the severity of psychopathological and neurological impairments increases with increasing severity of depression. Depressive symptoms may be both a risk factor for, as well as a prodrome of dementia. Major depressive syndrome of Alzheimer's disease may be among the most common mood disorders of older adults. Treating depression is therefore a key clinical priority to improve the quality of life both of people with dementia as well as their carergivers. Nonpharmacological approaches and watchful waiting should be attempted first in patients who present with mild to moderate depression and dementia. In cases of severe depression or depression not able to be managed through nonpharmacological means, antidepressant therapy should be considered. PMID:25962363

  7. Concept Analysis: Alzheimer’s Caregiver Stress

    PubMed Central

    Llanque, Sarah; Savage, Lynette; Rosenburg, Neal; Honor’s, BA; Caserta, Michael

    2015-01-01

    AIM The aim of this article was to analyze the concept of caregiver stress in the context of caring for a person with Alzheimer’s disease and related dementias. BACKGROUND Currently, there are more than 15 million unpaid care-givers for persons suffering from Alzheimer’s disease and related dementias. This unpaid care can be stressful for caregivers due to the chronic nature of the disease process, as well as other factors. METHOD The paper incorporates the modified method of Wilson’s concept analysis procedure to analyze the concept of caregiver stress. DATA SOURCES A review of the literature was undertaken using the Cumulative Index to Nursing and Allied Health Literature, Google Scholar, and PubMed. RESULTS A theoretical definition of caregiver stress is provided, and the defining attributes, related concepts, antecedents, and consequences of caregiver stress are proposed, and case studies are presented. CONCLUSIONS The analysis demonstrates that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress on the caregiver. Implications for future nursing research and practice conclude the paper. PMID:24787468

  8. Developing a Measurement Strategy for Assessing Family Caregiver Skills: Conceptual Issues

    PubMed Central

    Farran, Carol J.; McCann, Judith J.; Fogg, Louis G.; Etkin, Caryn D.

    2009-01-01

    This report presents a conceptual approach to assessing skills of family caregivers for persons with Alzheimer’s disease and recommends next steps for development of this science. Researchers used multiple methods to develop a conceptual strategy for assessing family caregiver skills. Study participants included clinical/outreach staff from an Alzheimer’s Disease Center, nursing faculty with expertise in dementia care, and family caregivers. Mixed methods contributed to the conceptual clarification of caregiving skill and to the development of three approaches to assessing caregiver skill: caregiver self report, clinician assessment, and direct observational assessment. Caregiver effectiveness has the potential to affect the process of caregiving and outcomes for the person with dementia and caregiver. PMID:20179779

  9. Treatable Dementias

    PubMed Central

    Mahler, Michael E.; Cummings, Jeffrey L.; Benson, D. Frank

    1987-01-01

    Dementia is an acquired impairment of intellect produced by brain dysfunction. In the past, dementia was regarded as inevitably chronic, progressive and irreversible. More recently dementia has been viewed as a clinical syndrome that may be produced by both irreversible and reversible conditions. Recognition of the presence of a dementia syndrome should be followed by an evaluation for potentially treatable causes of the intellectual deterioration. Dementia treatment includes therapy for reversible or curable dementias and nonspecific interventions that may improve the condition of patients with progressive dementia syndromes. PMID:3617715

  10. 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. PMID:24798641