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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. 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.…

  16. 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…

  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. 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…

  14. 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…

  15. 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…

  16. 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,…

  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 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

  15. 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

  16. 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

  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. 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

  6. 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

  7. 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

  8. 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

  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. 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

  2. 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

  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. 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…

  11. 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…

  12. 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…

  13. 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

  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. [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

  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. 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

  2. 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

  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. 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

  13. 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

  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 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

  2. 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

  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. 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…

  13. 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…

  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. 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…

  14. 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…

  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. 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 ...

  4. 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 ...

  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

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

    ERIC Educational Resources Information Center

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

    2006-01-01

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

  12. [Grieving among relatives and caregivers].

    PubMed

    Pascual, Angel María; Santamaría, Juan Luis

    2009-11-01

    This article provides a definition and description of grief, its characteristics, and the current explanatory models of this phenomenon (the stage model, task model, constructivist model and dual process model). The authors argue that a state of mourning in advance is produced in the process of dementia as a result of significant relational loss before death and describe the risk factors for complicated grief in caregivers: overload, lack of personal and material resources, delegation of care, and complex feelings such as guilt. The need for healthcare organizations to provide professional caregivers with the appropriate means to help with grief and to develop their own measures to prevent burnout is stressed. These measures could include protocols that provide bereavement intervention with the family, the primary caregiver, other patients and/or residents and the professional caregiving team. Finally, losses in persons with dementia must be taken into consideration, avoiding phenomena such as silencing and overprotection and encouraging acceptance and emotional support of their pain so that organic and emotional complications do not occur. PMID:19837483

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

    ERIC Educational Resources Information Center

    Schmall, Vicki L.; Cleland, Marilyn

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

  14. 77 FR 50548 - Agency Information Collection: (PACT Clinical Innovation Study: Engaging Caregivers in the Care...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-08-21

    ... Veterans With Dementia); Comment Request AGENCY: Veterans Health Administration, Department of Veterans... being requested for information needed to improve dementia care for patients and care givers. DATES...: Engaging Caregivers in the Care of Veterans with Dementia, VA Form 10-0537, Appendices a-u. OMB...

  15. Dementia care in rural China

    PubMed Central

    2013-01-01

    Dementia is a major cause of disability and has immense cost implications for the individual suffering from the condition, family caregivers and society. Given the high prevalence of dementia in China with its enormous and rapidly expanding population of elderly adults, it is necessary to develop and test approaches to the care for patients with this disorder. The need is especially great in rural China where access to mental healthcare is limited, with the task made more complex by social and economic reforms over the last 30 years that have transformed the Chinese family support system, family values and health delivery systems. Evidence-based collaborative care models for dementia, depression and other chronic diseases that have been developed in some Western countries serve as a basis for discussion of innovative approaches in the management of dementia in rural China, with particular focus on its implementation in the primary care system. PMID:24427180

  16. Social commitment robots and dementia.

    PubMed

    Roger, Kerstin; Guse, Lorna; Mordoch, Elaine; Osterreicher, Angela

    2012-03-01

    In 2010, approximately 500,000 Canadians suffered from a dementia-related illness. The number of sufferers is estimated to double in about 25 years. Due to this growing demographic, dementia (most frequently caused by Alzheimer's disease) will increasingly have a significant impact on our aging community and their caregivers. Dementia is associated with challenging behaviours such as agitation, wandering, and aggression. Care providers must find innovative strategies that facilitate the quality of life for this population; moreover, such strategies must value the individual person. Social commitment robots - designed specifically with communication and therapeutic purposes - provide one means towards attaining this goal. This paper describes a study in which Paro (a robotic baby harp seal) was used as part of a summer training program for students. Preliminary conclusions suggest that the integration of social commitment robots may be clinically valuable for older, agitated persons living with dementia in long-term care settings. PMID:22336517

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

    PubMed

    Stokes, Laura; Combes, Helen; Stokes, Graham

    2015-09-01

    This review examines how people understand and make sense of a dementia diagnosis. The review explores how lay frameworks and information presented at diagnosis may inform a caregiver's understanding of dementia in a family member. Existing qualitative research exploring how caregivers understand and make sense of dementia is reviewed. A literature search was conducted, and the results indicated that family carers often receive little or unclear information about dementia, with diagnostic information often delivered in euphemistic terms. Lack of clarity regarding diagnosis and prognosis creates uncertainty for caregivers and impacts future care planning. Caregiver's understandings of the condition vary, with some symptoms often not attributed to the condition. The literature highlights significant gaps and misconceptions in public knowledge regarding dementia, which raises questions about how family caregivers understand the condition. Further research is required to explore how information is presented to family carers at the time of diagnosis and how this is used to understand the condition. PMID:25515569

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

    PubMed Central

    2013-01-01

    Background In dementia personhood can be understood as increasingly concealed rather than lost. The sense of being a person evolves in relationships with others. The aim of this study was to increase the understanding of the nature and quality of relationships between persons with dementia, family carers and professional caregivers and how these relationships influenced personhood in people with dementia. Methods This Norwegian study had a qualitative hermeneutical design based on ten cases. Each case consisted of a triad: the person with dementia, the family carer and the professional caregiver. Inclusion criteria for persons with dementia were (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2 ie. moderate dementia (4) able to communicate verbally. A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day care centre. Data were analysed in two steps: (1) inductive analysis with an interpretive approach and (2) deductive analysis, applying a theoretical framework for person-centred care. Results Relationships that sustained personhood were close emotional bonds between family carers and persons with dementia and professional relationships between caregivers and persons with dementia. Relationships that diminished personhood were task-centred relationships and reluctant helping relationships between family carers and persons with dementia and unprofessional relationships between caregivers and persons with dementia. Conclusions A broad range of relationships was identified. Understanding the complex nature and quality of these relationships added insight as to how they influenced the provision of care and the personhood of persons with dementia. Personhood was not only bestowed upon them by family carers and

  19. Other Dementias

    MedlinePlus

    ... National Institute on Aging) Vascular Dementia fact sheet (University of California, San Francisco, Memory and Aging Center) ... Library of Medicine) Lewy Body Dementias fact sheet (University of California, San Francisco, Memory and Aging Center) ...

  20. Biomarkers of aggression in dementia.

    PubMed

    Gotovac, Kristina; Nikolac Perković, Matea; Pivac, Nela; Borovečki, Fran

    2016-08-01

    Dementia is a clinical syndrome defined by progressive global impairment of acquired cognitive abilities. It can be caused by a number of underlying conditions. The most common types of dementia are Alzheimer's disease (AD), frontotemporal dementia (FTD), vascular cognitive impairment (VCI) and dementia with Lewy bodies (DLB). Despite the fact that cognitive impairment is central to the dementia, noncognitive symptoms, most commonly described nowadays as neuropsychiatric symptoms (NPS) exist almost always at certain point of the illness. Aggression as one of the NPS represents danger both for patients and caregivers and the rate of aggression correlates with the loss of independence, cognitive decline and poor outcome. Therefore, biomarkers of aggression in dementia patients would be of a great importance. Studies have shown that different genetic factors, including monoamine signaling and processing, can be associated with various NPS including aggression. There have been significant and multiple neurotransmitter changes identified in the brains of patients with dementia and some of these changes have been involved in the etiology of NPS. Aggression specific changes have also been observed in neuropathological studies. The current consensus is that the best approach for development of such biomarkers may be incorporation of genetics (polymorphisms), neurobiology (neurotransmitters and neuropathology) and neuroimaging techniques. PMID:26952705

  1. What Is Caregiver Burnout?

    MedlinePlus

    ... heart Lifestyle + Risk Reduction Caregiving What Is Caregiver Burnout? Caregiver burnout is caused by too much long-term stress. ... themselves. They begin to show signs of caregiver burnout. Your healthy body, mind and spirit benefit your ...

  2. Caregiver Action Network

    MedlinePlus

    ... main content Caregiver Action Network Toggle navigation Toolbox Forum Volunteers Donate About Us Join National Family Caregivers ... for caring for a loved one Family Caregiver Forum Share and talk with other caregivers Rare Disease ...

  3. The use of socially assistive robots for dementia care.

    PubMed

    Huschilt, Julie; Clune, Laurie

    2012-10-01

    Innovative solutions for dementia care are required to address the steady rise in adults living with dementia, lack of adequate staffing to provide high-quality dementia care, and the need for family caregivers to provide care for their loved ones in the home. This article provides an overview of the use of socially assistive robots (SARs) to offer support as therapists, companions, and educators for people living with dementia. Social, ethical, and legal challenges associated with the use of robotic technology in patient care and implications for the use of SARs by nurses are discussed. These items considered, the authors conclude that SARs should be considered as a viable way to assist people living with dementia to maintain their highest possible level of independence, enhance their quality of life, and provide support to overburdened family caregivers. Further research is needed to evaluate the merits of this technological approach in the care of adults with dementia. PMID:22998095

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

    PubMed

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

    2016-09-01

    Caring for people with dementia imposes significant stress on family members and caregivers. Often, these informal caregivers have no coping strategy to deal with these behaviors. Anxiety and stress episodes are often triggered by problematic behaviors exhibited by the person who suffers from dementia. Detecting these behaviors could help them in dealing with them and reduce caregiver burden. However, work on anxiety detection using physiological signals has mostly been done under controlled conditions. In this paper we describe an experiment aimed at inducing anxiety among caregivers of people with dementia under naturalistic conditions. We report an experiment, using the naturalistic enactment technique, in which 10 subjects were asked to care for an older adult who acts as if she experiences dementia. We record physiological signals from the participants (GSR, HR, EEG) during the sessions that lasted for approximately 30 min. We explain how we obtained ground truth from self-report and observation data. We conducted two different tests using the Support Vector Machine technique. We obtained an average precision of 77.8 % and 38.1 % recall when classifying two different possible states: "Anxious" and "Not anxious". Analysis of the data provides evidence that the experiment elicits state anxiety and that it can be detected using wearable sensors. Furthermore, if episodes of problematic behaviors can also be detected, the recognition of anxiety in the caregiver can be improved, leading to the enactment of appropriate interventions to help caregivers cope with anxiety episodes. PMID:27443338

  5. Caregiving for Alzheimer's Disease or Other Dementia

    MedlinePlus

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

  6. Apraxias in Neurodegenerative Dementias

    PubMed Central

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

    2015-01-01

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

  7. Health Care Hassles of Caregivers to the Chronically Ill

    ERIC Educational Resources Information Center

    Keith, Pat M.

    2009-01-01

    This research investigated variables that influenced hassles with the health care system among 320 informal caregivers of the chronically ill. Caregivers of the chronically ill usually have considerable contact with the health care system. The research shifted the focus from strain in the caregiver-recipient dyad to hassles with the health care…

  8. Creating relationships with persons with moderate to severe dementia

    PubMed Central

    Kjellström, Sofia; Hellström, Ingrid

    2013-01-01

    The study describes how relationships are created with persons with moderate to severe dementia. The material comprises 24 video sequences of Relational Time (RT) sessions, 24 interviews with persons with dementia and eight interviews with professional caregivers. The study method was Constructivist Grounded Theory. The categories of ‘Assigning time’, ‘Establishing security and trust’ and ‘Communicating equality’ were strategies for arriving at the core category, ‘Opening up’, which was the process that led to creating relationships. Both parties had to contribute to create a relationship; the professional caregiver controlled the process, but the person with dementia permitted the caregiver's overtures and opened up, thus making the relationship possible. Interpersonal relationships are significant to enhancing the well-being of persons with dementia. Small measures like RT that do not require major resources can open paths to creating relationships. PMID:24336663

  9. Creating relationships with persons with moderate to severe dementia.

    PubMed

    Ericsson, Iréne; Kjellström, Sofia; Hellström, Ingrid

    2013-01-01

    The study describes how relationships are created with persons with moderate to severe dementia. The material comprises 24 video sequences of Relational Time (RT) sessions, 24 interviews with persons with dementia and eight interviews with professional caregivers. The study method was Constructivist Grounded Theory. The categories of 'Assigning time', 'Establishing security and trust' and 'Communicating equality' were strategies for arriving at the core category, 'Opening up', which was the process that led to creating relationships. Both parties had to contribute to create a relationship; the professional caregiver controlled the process, but the person with dementia permitted the caregiver's overtures and opened up, thus making the relationship possible. Interpersonal relationships are significant to enhancing the well-being of persons with dementia. Small measures like RT that do not require major resources can open paths to creating relationships. PMID:24336663

  10. Factors Associated with Caregiver Burden in Patients with Alzheimer's Disease

    PubMed Central

    Kang, Hyo Shin; Myung, Woojae; Na, Duk L.; Kim, Seong Yoon; Lee, Jae-Hong; Han, Seol-Heui; Choi, Seong Hye; Kim, SangYun; Kim, Seonwoo

    2014-01-01

    Objective Caregivers for patients with Alzheimer's disease (AD) suffer from psychological and financial burdens. However, the results of the relationship between burden and cognitive function, performance of activities of daily living, and depressive symptoms have remained inconsistent. Therefore, the aim of this study was to examine which factors are more significant predictors of heightened burden, cognitive impairment or functional decline, besides neuropsychiatric symptoms. Methods A cross-sectional study was conducted in a sample comprised of 1,164 pairs of patients with AD and caregivers from the Clinical Research of Dementia of South Korea study cohorts. The cognitive function of each sub-domain, functional impairments, depressive symptoms, and caregiver burden were assessed using the dementia version of Seoul Neuropsychological Screening Battery (SNSB-D), Barthel Index for Daily Living Activities (ADL), Seoul-Instrumental Activities of Daily Living (S-IADL), the Clinical Dementia Rating Sum of Box (CDR-SB), the Global Deterioration Scale (GDS), the Korean version of the Neuropsychiatric Inventory (K-NPI), and the 15-item Geriatric Depression Scale. Results We found that higher severity (higher CDR-SB and GDS scores) and more functional impairment (lower ADL and higher S-IADL scores) were significantly associated with higher caregiver burden. In addition, depressive symptoms of patients (higher Geriatric Depression Scale scores) were associated with higher caregiver burden. Conclusion Therefore, interventions to help maintain activities of daily living in patients with AD may alleviate caregiver burden and improve caregiver well-being. PMID:24843370

  11. Sleep, Cognition and Dementia.

    PubMed

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

    2015-12-01

    The older patient population is growing rapidly around the world and in the USA. Almost half of seniors over age 65 who live at home are dissatisfied with their sleep, and nearly two-thirds of those residing in nursing home facilities suffer from sleep disorders. Chronic and pervasive sleep complaints and disturbances are frequently associated with excessive daytime sleepiness and may result in impaired cognition, diminished intellect, poor memory, confusion, and psychomotor retardation all of which may be misinterpreted as dementia. The key sleep disorders impacting patients with dementia include insomnia, hypersomnolence, circadian rhythm misalignment, sleep disordered breathing, motor disturbances of sleep such as periodic leg movement disorder of sleep and restless leg syndrome, and parasomnias, mostly in the form of rapid eye movement (REM) sleep behavior disorder (RBD). RBD is a pre-clinical marker for a class of neurodegenerative diseases, the "synucleinopathies", and requires formal polysomnographic evaluation. Untreated sleep disorders may exacerbate cognitive and behavioral symptoms in patients with dementia and are a source of considerable stress for bed partners and family members. When left untreated, sleep disturbances may also increase the risk of injury at night, compromise health-related quality of life, and precipitate and accelerate social and economic burdens for caregivers. PMID:26478197

  12. The unique experience of spouses in early-onset dementia.

    PubMed

    Ducharme, Francine; Kergoat, Marie-Jeanne; Antoine, Pascal; Pasquier, Florence; Coulombe, Renée

    2013-09-01

    To date, few studies have examined the experience of spouse caregivers living with a person with early-onset dementia. Moreover, few support resources are offered to these family caregivers and fewer are still tailored to their unique trajectory. The aim of this qualitative study was to document the lived experience of spouse caregivers of young patients in order to inform the development of professional support tailored to their reality. A sample of 12 spouses of persons diagnosed with dementia before the age of 65 participated in semistructured interviews. Six themes emerged from their caregiver trajectories, namely, difficulty managing behavioral and psychological symptoms, long quest for diagnosis, nondisclosure to others and denial of diagnosis, grief for loss of spouse and midlife projects, difficulty juggling unexpected role and daily life responsibilities, and difficulty planning for future. Results open up innovative avenues for the development of interventions geared to facilitating role transition for these spouse caregivers. PMID:23823140

  13. Alzheimer's disease and other dementias in Canada.

    PubMed

    Wong, Suzy L; Gilmour, Heather; Ramage-Morin, Pamela L

    2016-05-18

    This article provides information on Alzheimer's disease and other dementias, using the 2010/2011 Canadian Community Health Survey, the 2011/2012 Survey of Neurological Conditions in Institutions in Canada, and the 2011 Survey on Living with Neurological Conditions in Canada. Among Canadians aged 45 or older, an estimated 0.8% in private households and 45% in long-term residential care facilities had a diagnosis of dementia. Prevalence rose with age. The vast majority of people with dementia in private households received assistance with medical care (81%), housework and home maintenance (83%), meal preparation (88%), emotional support (90%), transportation (92%), and managing care (92%). Among those receiving assistance, 85% relied, at least in part, on family, friends or neighbours. The primary caregiver tended to be a spouse (46%) or an adult child (44%), most of whom were daughters (71%). The majority of primary caregivers lived in the same household (83%) and provided daily care (86%). PMID:27192206

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

    PubMed Central

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

    2013-01-01

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

  15. About Alzheimer's Disease: Caregiving

    MedlinePlus

    ... National Alzheimer's Project Act (NAPA) About ADEAR About Alzheimer's Disease: Caregiving On this page: Caregiving Tip Sheets and ... Care Caregiving News Caring for a person with Alzheimer’s disease can have high physical, emotional, and financial costs. ...

  16. DEMENTIA CARE IN ASSISTED LIVING: NEEDS AND CHALLENGES

    PubMed Central

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

    2011-01-01

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

  17. Acculturation and depressive symptoms in latino caregivers of cognitively impaired older adults

    PubMed Central

    Meyer, Oanh L.; Geller, Sue; He, Emily; González, Hector M.; Hinton, Ladson

    2014-01-01

    Background Caregiving for older adults is a growing public health concern because of the negative psychological effects it has on caregivers. Despite the growing Latino caregiver population, little is known regarding how the effects of acculturation on caregiver depressive symptoms might vary by caregiver age. This study aimed to examine the relationship between language acculturation and depressive symptoms in Latino caregivers, and to test whether this relationship was moderated by age. Methods Ninety-four Latino caregivers of cognitively impaired older adults with and without dementia were identified through an ongoing epidemiological cohort study. Caregivers were interviewed in their homes, in either Spanish or English. A Poisson regression was used to analyze the caregiver characteristics associated with caregiver depressive symptoms. Results Language acculturation was positively associated with caregiver depressive symptoms, as was age, female gender, and being married or living with someone. Those with excellent or good health and who had spent more than one year caregiving had lower depressive symptoms. Finally, the positive relationship between language acculturation and depressive symptoms was increased in older caregivers. Conclusions Language acculturation appears to be a risk factor for depressive symptoms in Latino caregivers of cognitively impaired older adults. The relationship between language acculturation and depressive symptoms is complex such that caregiver age and health status further nuance this relationship. Future research should explore the independent and interactive effects of these variables on depressive symptoms. PMID:24717691

  18. [Sleep disorders in dementia patients].

    PubMed

    Savaskan, E

    2015-06-01

    Dementia is characterized by cognitive and also behavioral and psychological symptoms of dementia (BPSD). The most prominent BPSD are depression and apathy but sleep disorders also complicate the clinical course of dementia. These symptoms are a severe burden for patients and caregivers and are difficult to treat partly due to comorbidities. Common sleep disorders in dementia are insomnia, hypersomnia, circadian rhythm alterations and aberrant nocturnal motor behavior. Sleep duration and rapid eye movement (REM) sleep are reduced. The diagnostic assessment of sleep disorders should include an evaluation of the underlying risk factors and a detailed sleep history for which several assessment instruments are available. The therapy of sleep disorders of dementia is primarily nonpharmacological: sleep counseling, sleep hygiene regulation, relaxation and psychotherapy techniques are given priority. Pharmacological treatment often has severe side effects in this elderly, vulnerable population and can only be considered if other nonpharmacological options have been unsuccessful. The application of medication should be limited in time and dosage. The pharmacological therapeutic options are critically discussed in detail. PMID:25957245

  19. Economic Impact of Dementia by Disease Severity: Exploring the Relationship between Stage of Dementia and Cost of Care in Taiwan

    PubMed Central

    Ku, Li-Jung Elizabeth; Pai, Ming-Chyi; Shih, Pei-Yu

    2016-01-01

    Objective Given the shortage of cost-of-illness studies in dementia outside of the Western population, the current study estimated the annual cost of dementia in Taiwan and assessed whether different categories of care costs vary by severity using multiple disease-severity measures. Methods This study included 231 dementia patient–caregiver dyads in a dementia clinic at a national university hospital in southern Taiwan. Three disease measures including cognitive, functional, and behavioral disturbances were obtained from patients based on medical history. A societal perspective was used to estimate the total costs of dementia according to three cost sub-categories. The association between dementia severity and cost of care was examined through bivariate and multivariate analyses. Results Total costs of care for moderate dementia patient were 1.4 times the costs for mild dementia and doubled from mild to severe dementia among our community-dwelling dementia sample. Multivariate analysis indicated that functional declines had a greater impact on all cost outcomes as compared to behavioral disturbance, which showed no impact on any costs. Informal care costs accounted for the greatest share in total cost of care for both mild (42%) and severe (43%) dementia patients. Conclusions Since the total costs of dementia increased with severity, providing care to delay disease progression, with a focus on maintaining patient physical function, may reduce the overall cost of dementia. The greater contribution of informal care to total costs as opposed to social care also suggests a need for more publicly-funded long-term care services to assist family caregivers of dementia patients in Taiwan. PMID:26859891

  20. Barriers to Implementation of Case Management for Patients With Dementia: A Systematic Mixed Studies Review

    PubMed Central

    Khanassov, Vladimir; Vedel, Isabelle; Pluye, Pierre

    2014-01-01

    PURPOSE Results of case management designed for patients with dementia and their caregivers in community-based primary health care (CBPHC) were inconsistent. Our objective was to identify the relationships between key outcomes of case management and barriers to implementation. METHODS We conducted a systematic mixed studies review (including quantitative and qualitative studies). Literature search was performed in MEDLINE, PsycINFO, Embase, and Cochrane Library (1995 up to August 2012). Case management intervention studies were used to assess clinical outcomes for patients, service use, caregiver outcomes, satisfaction, and cost-effectiveness. Qualitative studies were used to examine barriers to case management implementation. Patterns in the relationships between barriers to implementation and outcomes were identified using the configurational comparative method. The quality of studies was assessed using the Mixed Methods Appraisal Tool. RESULTS Forty-three studies were selected (31 quantitative and 12 qualitative). Case management had a limited positive effect on behavioral symptoms of dementia and length of hospital stay for patients and on burden and depression for informal caregivers. Interventions that addressed a greater number of barriers to implementation resulted in increased number of positive outcomes. Results suggested that high-intensity case management was necessary and sufficient to produce positive clinical outcomes for patients and to optimize service use. Effective communication within the CBPHC team was necessary and sufficient for positive outcomes for caregivers. CONCLUSIONS Clinicians and managers who implement case management in CBPHC should take into account high-intensity case management (small caseload, regular proactive patient follow-up, regular contact between case managers and family physicians) and effective communication between case managers and other CBPHC professionals and services. PMID:25354410

  1. Statewide implementation of "reducing disability in Alzheimer's disease": impact on family caregiver outcomes.

    PubMed

    Menne, Heather L; Bass, David M; Johnson, Justin D; Primetica, Branka; Kearney, Keith R; Bollin, Salli; Molea, Marcus J; Teri, Linda

    2014-01-01

    There have been few replications of efficacious evidence-based programs for dementia caregivers offered in community settings. This study highlights the replication of the evidence-based Reducing Disability in Alzheimer's Disease program and explores the changes in outcomes for participating caregivers and whether those changes are related to level of program utilization. With data from 219 caregivers, regression results indicate that more exercise sessions are associated with a decrease in caregiver strain and more behavior management sessions are associated with a decrease in unmet needs after 3 months. Findings demonstrate how a multicomponent program can have positive benefits for family caregivers. PMID:24329593

  2. Psychiatric morbidity in dementia patients in a neurology-based memory clinic.

    PubMed

    Shih, Ching-Sen; Yan, Sui-Hing; Ho, Ying-Hoo; Lin, Yuh-Te; Li, Jie-Yuan; Lo, Yuk-Keung

    2005-12-01

    The behavioral and psychological symptoms of dementia (BPSD) often present major problems for patients and their caregivers. In the past, neurologists paid less attention to such symptoms than to the cognitive symptoms of dementia. This prospective study investigated the prevalence of psychiatric morbidity in a neurology-based memory clinic and the stress of caregivers. Our patients with dementia were found to have a high prevalence of BPSD. The most frequent were anxiety, apathy, and delusion; the most distressing to caregivers were agitation, anxiety, delusion, and sleep disturbance. Using Clinical Dementia Rating (CDR), we compared BPSD between patients with mild dementia and those with moderate dementia. Only hallucinations and agitation were different significantly. Moderate dementia patients experienced these symptoms more frequently. The high prevalence of these symptoms might be explained by the fact that the cognitive symptoms were neglected or no enough information were received by many family members of patients with dementia until their own life quality was interfered and then they began to seek medical help. These symptoms and their effect of caregiver distress can be effectively reduced by pharmacologic and nonpharmacoloic managements, caregiver-focused training and education. They can be better approached by assessing neuropsychiatric symptoms regularly, educating the general population better, and treating these patients earlier. PMID:16425544

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

    ERIC Educational Resources Information Center

    Silliman, Rebecca A.; Sternberg, Josef

    1988-01-01

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

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

    ERIC Educational Resources Information Center

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

    2011-01-01

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

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

    PubMed Central

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

    2016-01-01

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

  6. Mixed Dementia

    MedlinePlus

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

  7. Vascular dementia

    MedlinePlus

    ... Alzheimer's Disease, and Dementia . 2nd ed. Philadelphia, PA: Elsevier; 2016:chap 6. Gorelick PB, Scuteri A, Black ... eds. Goldman's Cecil Medicine . 25th ed. Philadelphia, PA: Elsevier Saunders; 2016:chap 402. Peterson R, Graff-Radford ...

  8. [The fate of the couple in dementia].

    PubMed

    Rieucau, Audrey; David, Jean-Philippe; Bungener, Catherine

    2011-12-01

    Helping and caring for patients suffering from Alzheimer's disease and related dementias are mostly provided by the patient's entourage at his home. The non-professional caregivers are described under the name of « natural or informal help ». Although more and more studies are coming out concerning the notion of caregiver burden, very few deal with the consequences upon the intrapsychic experience of the person sharing the life of the demented patient. Even fewer studies are devoted to specific aspects of the conjugal bond at the center of dementia. How will time and old age affect this bond, both on the objectal and narcissistic levels? What can explain the fact that, for some, the conjugal bond becomes pathological? What will happen when one adds dementia to the equation? In a situation of aging conjugopathy, where one member of the couple develops a neurodegenerative disease, what allows some caregivers to take advantage of new psychic investments whereas others fall apart? The propensity to experience satisfactions in the caregiving situation seems to depend, among other things, upon personality traits, as illustrated by one clinical case. PMID:22182822

  9. Goals of care in advanced dementia: quality of life, dignity and comfort.

    PubMed

    Volicer, L

    2007-01-01

    provision of care. Van der Steen et al. present evidence that lower respiratory tract infection leads frequently but not always to functional decline. However, it is significant that the Dutch participants in this study were never hospitalized and always treated in a nursing home. Hospitalization leads to functional deterioration even in cognitively intact elderly individuals (4). In addition, treatment of lower respiratory infection is more effective when provided in a nursing home than when the resident is transferred to an acute care setting (5). It should also be considered that antibiotic treatment of lower respiratory tract infections in individuals with terminal dementia does not increase their comfort and lifespan (6). Dignity is an often invoked goal of care in dementia but it is often poorly defined and characterized. Holmerova et al. provide a detailed description of the concept of dignity and its application in dementia care. They also present two specific examples of problems encountered when individuals with advanced dementia are treated insensitively in an acute care setting. Dignity oriented care should treat everybody as an individual and provide care according to the goals of care determined before any crisis situation (7). Namaste Care is an example of care setting that respects individual's dignity until death; respecting "the spirit within". Tube feeding in individuals with advanced progressive dementia does not promote quality of life, dignity or comfort. Tube feeding deprives individuals from contact with the caregiver during hand feeding and from enjoyment of the taste of food. Tube feeding often requires use of restraints that decreases an individual's dignity and comfort. Despite the lack of beneficial effects and the burdens that the tube feeding imposes (8), it is still widely used in individuals with advanced dementia. Pang et al. compare the use of tube feeding in two different settings of dementia care, one in which tube feeding is not used

  10. Clinical features and multidisciplinary approaches to dementia care

    PubMed Central

    Grand, Jacob HG; Caspar, Sienna; MacDonald, Stuart WS

    2011-01-01

    Dementia is a clinical syndrome of widespread progressive deterioration of cognitive abilities and normal daily functioning. These cognitive and behavioral impairments pose considerable challenges to individuals with dementia, along with their family members and caregivers. Four primary dementia classifications have been defined according to clinical and research criteria: 1) Alzheimer’s disease; 2) vascular dementias; 3) frontotemporal dementias; and 4) dementia with Lewy bodies/Parkinson’s disease dementia. The cumulative efforts of multidisciplinary healthcare teams have advanced our understanding of dementia beyond basic descriptions, towards a more complete elucidation of risk factors, clinical symptoms, and neuropathological correlates. The characterization of disease subtypes has facilitated targeted management strategies, advanced treatments, and symptomatic care for individuals affected by dementia. This review briefly summarizes the current state of knowledge and directions of dementia research and clinical practice. We provide a description of the risk factors, clinical presentation, and differential diagnosis of dementia. A summary of multidisciplinary team approaches to dementia care is outlined, including management strategies for the treatment of cognitive impairments, functional deficits, and behavioral and psychological symptoms of dementia. The needs of individuals with dementia are extensive, often requiring care beyond traditional bounds of medical practice, including pharmacologic and non-pharmacologic management interventions. Finally, advanced research on the early prodromal phase of dementia is reviewed, with a focus on change-point models, trajectories of cognitive change, and threshold models of pathological burden. Future research goals are outlined, with a call to action for social policy initiatives that promote preventive lifestyle behaviors, and healthcare programs that will support the growing number of individuals affected by

  11. Magnitude and Causes of Bias among Family Caregivers rating Alzheimer’s Disease Patients

    PubMed Central

    Schulz, Richard; Cook, Thomas B.; Beach, Scott R.; Lingler, Jennifer H.; Martire, Lynn M.; Monin, Joan K.; Czaja, Sara J.

    2011-01-01

    Objective Family caregivers generally underestimate the health and well-being of Alzheimer’s disease (AD) patients when compared to patient self-assessments. The goals of this study were to identify caregiver, patient, and contextual factors associated with caregiver rating bias. Methods 105 patients with AD and their family caregivers were assessed twice by trained interviewers one year apart. In separate interviews, caregivers were asked to rate the quality of life and suffering of their patient relative, and patients provided self-ratings using the same structured instruments. Multivariate cross-sectional and longitudinal analyses were used to identify predictors of caregiver-patient discrepancies. Results Caregivers consistently reported significantly higher levels of suffering and lower levels of quality of life than patients. Caregiver psychological well-being and health status accounted for a substantial portion of the difference in caregiver and patient ratings in both cross-sectional and longitudinal analyses. Caregiver depression and burden were consistently positively associated with the magnitude of caregiver-patient discrepancy, and caregiver health status was negatively associated with the size of the discrepancy. Conclusions Caregiver assessments of dementia patients may determine the type and frequency of treatment received by the patient, and caregivers’ ability to reliably detect change in patient status can play a critical role in evaluating the efficacy of therapeutic interventions and pharmacologic agents. Clinicians and researchers working with dementia patients who rely on caregiver reports of patient status should be sensitive to the health and well-being of the caregiver and recognize that caregiver assessments may be negatively biased when the caregiver’s own well-being is compromised. PMID:23290199

  12. End-of-life care in advanced dementia.

    PubMed

    Heron, Christopher R; Simmons, B Brent

    2014-10-01

    In the next 30 years, the average age of the population will continue to increase, as will the prevalence of dementia. The management of advanced dementia requires the careful orchestration of communication, prognostication, patient care, and caregiver education. Understanding the specific tools available to establish prognosis and guide medical management in these complicated medical patients greatly improves patient and caregiver satisfaction at the end of the patient's life. In caring for patients with advanced-stage dementia, providers should be knowledgeable regarding the terminal nature of the condition and its common comorbid diseases, and should be prepared to educate the patients' caregivers, building a structure of support for the patient's benefit and navigating the complexities of end-of-life care. PMID:25414940

  13. The Concept of Missing Incidents in Persons with Dementia

    PubMed Central

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

    2015-01-01

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

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

    PubMed Central

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

    2016-01-01

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

  15. Are we providing the best possible care for dementia patients?

    PubMed

    Borisovskaya, Anna; Chen, Kathryn; Borson, Soo

    2015-01-01

    Healthcare for patients with dementia is often reactive, poorly organized and fragmented. We discuss opportunities for improvements in the care of individuals living with dementia at home that can be implemented by physicians in their practices today. In particular, we argue that systematic identification and diagnosis of cognitive impairment and dementia in their early stages, coupled with a coherent, evidence-informed management framework, would benefit patients with dementia substantially and ease the burden of their caregivers. We emphasize that dementia influences all aspects of patient care, and each medical decision must be passed through the filter of knowledge that patients with dementia have special needs that can be identified and addressed. PMID:26107320

  16. Dementia Home Care Resources: How Are We Managing?

    PubMed Central

    Ward-Griffin, Catherine; Hall, Jodi; DeForge, Ryan; St-Amant, Oona; McWilliam, Carol; Oudshoorn, Abram; Forbes, Dorothy; Klosek, Marita

    2012-01-01

    With the number of people living with dementia expected to more than double within the next 25 years, the demand for dementia home care services will increase. In this critical ethnographic study, we drew upon interview and participant data with persons with dementia, family caregivers, in-home providers, and case managers in nine dementia care networks to examine the management of dementia home care resources. Three interrelated, dialectical themes were identified: (1) finite formal care-inexhaustible familial care, (2) accessible resources rhetoric-Iinaccessible resources reality, and (3) diminishing care resources-increasing care needs. The development of policies and practices that provide available, accessible, and appropriate resources, ensuring equitable, not necessarily equal, distribution of dementia care resources is required if we are to meet the goal of aging in place now and in the future. PMID:22132332

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

    PubMed Central

    2015-01-01

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

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

    PubMed

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

    2016-05-01

    Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning. PMID:26527229

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

    PubMed

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

    2016-01-01

    Training could be a lever for improving the quality of care of residents with dementia in nursing homes by changing social representations. Beyond a simple assessment of acquired knowledge, a change of social representations could be indicative of a true appropriation of the content of the training. A study was carried out to assess the impact of training on nursing home caregivers' representations of dementia and Alzheimer's disease. PMID:26976314

  20. [Development of an adapted leisure education program for persons with dementia].

    PubMed

    Carbonneau, Hélène; Caron, Chantal D; Desrosiers, Johanne

    2009-06-01

    Leisure represents a positive way to keep relationships satisfactory between caregivers and a person with dementia. Adapted leisure education is a promising approach to assist the family to discover new ways to share good times with their relatives. This study aimed to develop an adapted leisure education program. It included an evaluation of the caregivers' needs, the program content development, and a pilot study to experiment with the content of the program. Three focus groups of dementia caregivers (n = 19) were conducted to investigate caregivers needs. Based on content analysis of these focus groups and a literature review, the content of the program was developed. The pilot study (n = 4) included a quasi-experimental trial and an implementation evaluation. This study led to the development of an adapted leisure education program that puts caregiver support in a new perspective, focusing on positive aspects rather than the burden of caregiving. PMID:19860971

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

    ERIC Educational Resources Information Center

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

    2009-01-01

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

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

    ERIC Educational Resources Information Center

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

    2012-01-01

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

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

    PubMed

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

    2006-10-01

    Older people with dementia may display negative emotions, memory problems, sleep disturbance, and agitated behavior. Among these symptoms, agitated behavior has been identified by families and nursing staff as the care problem that presents the greatest challenge. Several studies have found that music therapy reduced agitated behaviors in those with dementia and recommended use of music as an effective strategy in managing this behavioral problem. Music therapy represents a lower cost, effective care approach that nursing staff can easily learn and apply to those with dementia. Furthermore, reductions in agitated behavior in dementia patients that result from music therapy can also alleviate caregiver stress and burden of care, leading to improvements in the health and quality of life of both dementia patients and their caregivers. This paper aims to introduce the principles and application of music therapy in the management of agitated behavior in those with dementia. PMID:17004208

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

    PubMed Central

    Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep

    2016-01-01

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

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

    PubMed

    Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep

    2016-03-22

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

  6. Frontotemporal Dementia.

    PubMed

    Kelley, Roger E; El-Khoury, Ramy

    2016-02-01

    Frontotemporal dementia (FTD) is a not-uncommon explanation for progressive cognitive deficit in patients who often have a genetic susceptibility for such a neurodegenerative process. However, FTD does not seem to identify one particular pathogenetic mechanism but rather a spectrum of pathologies with particular predilection for the frontal and temporal lobes of the brain. There have been various subcategorizations of this form of dementia that have a tendency to be of earlier onset than typical Alzheimer disease and heralded by behavioral or communication manifestations. There is a behavioral variant and a language variant, referred to as primary progressive aphasia. PMID:26613998

  7. Biomarkers of Resilience in Stress Reduction for Caregivers of Alzheimer's Patients.

    PubMed

    Ho, Lap; Bloom, Patricia A; Vega, Joan G; Yemul, Shrishailam; Zhao, Wei; Ward, Libby; Savage, Evan; Rooney, Robert; Patel, Divyen H; Pasinetti, Giulio Maria

    2016-06-01

    Caregiving for a dementia patient is associated with increased risk of psychological and physical health problems. We investigated whether a mindfulness-based stress reduction (MBSR) training course for caregivers that closely models the MBSR curriculum originally established by the Center of Mindfulness at the University of Massachusetts may improve the psychological resilience of non-professional caregivers of Alzheimer's disease patients. Twenty adult non-professional caregivers of dementia patients participated in an 8-week MBSR training course. Caregiver stress, depression, burden, grief, and gene expression profiles of blood mononuclear cells were assessed at baseline and following MBSR. MBSR training significantly improved the psychological resilience of some of the caregivers. We identified predictive biomarkers whose expression is associated with the likelihood of caregivers to benefit from MBSR, and biomarkers whose expression is associated with MBSR psychological benefits. Our biomarker studies provide insight into the mechanisms of health benefits of MBSR and a basis for developing a personalized medicine approach for applying MBSR for promoting psychological and cognitive resilience in caregivers of dementia patients. PMID:26984114

  8. Sleep complaints in older women who are family caregivers.

    PubMed

    Wilcox, S; King, A C

    1999-05-01

    Providing care to a family member with dementia has significant psychological and physical consequences. Sleep quality is likely affected by caregiving, yet this domain has received surprisingly little empirical study. In this study, sleep complaints were examined in 90 older women who were family caregivers of adults with dementia. Caregivers reported more sleep complaints than similarly aged healthy adults on all seven components of the Pittsburgh Sleep Quality Index, and a similar level of sleep complaints to those of sleep-impaired women and depressives on 6 and 4 components, respectively. Sleep medication was used by 38% of caregivers in the past month. The most common sleep complaints that occurred at least weekly were waking up in the night or early morning (84%), bathroom needs (83%), and sleep onset difficulties (41%). Sixty percent of the sample reporting nighttime care recipient disruptions stated that these disruptions occurred 3 or more times per week. Caregiver relationship and care recipient diagnosis were unrelated to sleep complaints. Lower levels of education, less internalized anger, care recipient disruptions, and psychological distress were related to poorer overall sleep quality. Sleep complaints are a common yet understudied problem in family caregivers. PMID:10363041

  9. Vascular dementia

    PubMed Central

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

    2012-01-01

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

  10. Dementia beyond 2025: Knowledge and uncertainties.

    PubMed

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

    2016-01-01

    Given that there may well be no significant advances in drug development before 2025, prevention of dementia-Alzheimer's disease through the management of vascular and lifestyle-related risk factors may be a more realistic goal than treatment. Level of education and cognitive reserve assessment in neuropsychological testing deserve attention, as well as cultural, social, and economic aspects of caregiving. Assistive technologies for dementia care remain complex. Serious games are emerging as virtual educational and pleasurable tools, designed for individual and cooperative skill building. Public policies are likely to pursue improving awareness and understanding of dementia; providing good quality early diagnosis and intervention for all; improving quality of care from diagnosis to the end of life, using clinical and economic end points; delivering dementia strategies quicker, with an impact on more people. Dementia should remain presented as a stand-alone concept, distinct from frailty or loss of autonomy. The basic science of sensory impairment and social engagement in people with dementia needs to be developed. E-learning and serious games programs may enhance public and professional education. Faced with funding shortage, new professional dynamics and economic models may emerge through coordinated, flexible research networks. Psychosocial research could be viewed as an investment in quality of care, rather than an academic achievement in a few centers of excellence. This would help provide a competitive advantage to the best operators. Stemming from care needs, a logical, systems approach to dementia care environment through organizational, architectural, and psychosocial interventions may be developed, to help reduce symptoms in people with dementia and enhance quality of life. Dementia-friendly environments, culture, and domesticity are key factors for such interventions. PMID:25740575

  11. Caregiver Response to Alzheimer's Disease.

    ERIC Educational Resources Information Center

    Novak, Mark; Guest, Carol

    1989-01-01

    Examined correlates of caregiver burden among 30 caregivers of Alzheimer's disease patients. Results revealed no significant correlation between length of time a caregiver had given care to a particular patient and the caregiver's subjective feelings of caregiver burden. Found significant, moderate correlation between caregiver burden and patient…

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

    PubMed

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

    2015-09-01

    This article describes a pilot of a weekly web based videoconference support group for five caregivers of persons with dementia. All participants reported positive views of the group and videoconference medium. Improvements in caregiver anxiety, depression, and physical health scores were observed. Depression scores remained the same with difficulties experienced by the caregiver increasing slightly. Self-efficacy for controlling upsetting thoughts and responding to disruptive behavior improved but worsened slightly for obtaining respite. We concluded that web based support was a positive experience for caregivers, providing them with an acceptable, feasible, low-cost technological alternative to in person support that reduced barriers to attendance by being available in homes. PMID:25062788

  13. Long Distance Caregiving

    MedlinePlus

    ... Home Current Issue Past Issues Feature: Senior Living Long Distance Caregiving Past Issues / Summer 2009 Table of ... distance to help him? Caregiving is often a long-term task. What begins with an occasional phone ...

  14. Caregivers program. Final rule.

    PubMed

    2015-01-01

    The Department of Veterans Affairs (VA) adopts, with changes, the interim final rule concerning VA's Program of Comprehensive Assistance for Family Caregivers. VA administers this program to provide certain medical, travel, training, and financial benefits to caregivers of certain veterans and servicemembers who were seriously injured during service on or after September 11, 2001. Also addressed in this rulemaking is the Program of General Caregiver Support Services that provides support services to caregivers of veterans from all eras who are enrolled in the VA health care system. Specifically, changes in this final rule include a requirement that Veterans be notified in writing should a Family Caregiver request revocation (to no longer be a Family Caregiver), an extension of the application timeframe from 30 days to 45 days for a Family Caregiver, and a change in the stipend calculation to ensure that Primary Family Caregivers do not experience unexpected decreases in stipend amounts from year to year. PMID:25581943

  15. Help for the Caregiver

    MedlinePlus

    ... Communicator The family caregiver has many roles besides giving the patient hands-on care. Most people think ... caregiver becomes an advocate for the patient by giving this information to the health care team. Although ...

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

    PubMed Central

    Dettmore, Diane; Kolanowski, Ann; Boustani, Malaz

    2009-01-01

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

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

    ERIC Educational Resources Information Center

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

    2009-01-01

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

  18. Subjective caregiver burden: validity of the 10-item short version of the Burden Scale for Family Caregivers BSFC-s

    PubMed Central

    2014-01-01

    Background Subjective burden is a central variable describing the situation encountered by family caregivers. The 10-item short version of the Burden Scale for Family Caregivers (BSFC-short/BSFC-s) was developed to provide an economical measure of this variable. The present study examined the reliability and validity of the BSFC-s. Methods Comprehensive data from “the IDA project” were the basis of the calculations, which included 351 dyads and examined medical data on people with dementia, interview data from their family caregivers, and health insurance data. A factor analysis was performed to explore the structure of the BSFC-s; Cronbach’s alpha was used to evaluate the internal consistency of the scale. The items were analyzed to determine the item difficulty and the discriminatory power. Construct validity was tested with five hypotheses. To establish the predictive validity of the BSFC-s, predictors of institutionalization at a follow-up time of 2.5 years were analyzed (binary logistic regression). Results The BSFC-s score adhered to a one-factor structure. Cronbach's alpha for the complete scale was .92. A significant increase in the BSFC-s score was observed when dementia progressed, disturbing behavior occurred more frequently, care requirements increased, and when caregivers were diagnosed with depression. Caregiver burden was the second strongest predictor of institutionalization out of a total of four significant predictors. Conclusions All hypotheses that referred to the construct validity were supported. The BSFC-short with its ten items is a very economical instrument for assessing the caregiver’s total subjective burden in a short time frame. The BSFC-s score has predictive validity for the institutionalization of people with dementia. Therefore it is an appropriate outcome measure to evaluate caregiver interventions. The scale is available for free in 20 languages (http://www.caregiver-burden.eu). This availability facilitates the

  19. Transitions in Spousal Caregiving.

    ERIC Educational Resources Information Center

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

    2003-01-01

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

  20. Caregiving and Ethnicity.

    ERIC Educational Resources Information Center

    Glicksman, Allen

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

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

    PubMed Central

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

    2016-01-01

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

  2. Investigation of eating actions of people with dementia from the viewpoint of self-awareness.

    PubMed

    Yokoi, Teruo; Haraguchi, Eriko; Hashimoto, Tomohiro; Okamura, Hitoshi

    2012-06-01

    The key to improve the quality of life of people with dementia and caregivers is whether caregivers can understand the meanings of the puzzling words and deeds of people with dementia. Therefore, 2 of the authors observed and wrote down the puzzling words and deeds of 28 people with dementia in eating scenes, and these words and deeds were interpreted using our original model consisting of "theory of mind," "self-evaluation," and "self-consciousness." The results indicated that the bases for why caregivers perceive the words and deeds of people with dementia in eating scenes as puzzling are (1) those unable to pass the task of self-evaluation cannot evaluate their own eating situations in comparison with social standards, and the food culture collapses and (2) those unable to pass the task of self-consciousness cannot perceive through their senses. PMID:22739030

  3. Parkinson's Disease Dementia

    MedlinePlus

    ... Is Dementia Types of Dementia Chronic Traumatic Encephalopathy (CTE) Creutzfeldt-Jakob Disease Dementia with Lewy Bodies Down ... Research Traumatic Brain Injury and Chronic Traumatic Encephalopathy (CTE) Awardees Year Researcher Study Name 2015 Jesse Mez ...

  4. Types of Dementia

    MedlinePlus

    ... Is Dementia Types of Dementia Chronic Traumatic Encephalopathy (CTE) Creutzfeldt-Jakob Disease Dementia with Lewy Bodies Down ... Research Traumatic Brain Injury and Chronic Traumatic Encephalopathy (CTE) Awardees Year Researcher Study Name 2015 Jesse Mez ...

  5. What to Ask: Dementia

    MedlinePlus

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

  6. Prevalence and Predictors of Change in Adult-Child Primary Caregivers

    ERIC Educational Resources Information Center

    Szinovacz, Maximiliane E.; Davey, Adam

    2013-01-01

    Family caregiving research is increasingly contextual and dynamic, but few studies have examined prevalence and predictors of change in primary caregivers, those with the most frequent contact with healthcare professionals. We identified prevalence and predictors of 2-year change in primary adult-child caregivers. Data pooled from the 1992-2000…

  7. Care pathways for dementia: current perspectives.

    PubMed

    Samsi, Kritika; Manthorpe, Jill

    2014-01-01

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

  8. Social Determinants of Dementia and Caregivers’ Perspectives in the Field Practice Villages of Rural Health Training Centre, Thiruvennainallur

    PubMed Central

    Gurukartick, J; Dongre, Amol R; Shah, Dharav

    2016-01-01

    Objectives: (1) To find out the prevalence of dementia in the study population and its social determinants. (2) To explore the family caregivers’ perceptions and their support needs. Materials and Methods - Study Setting: This study was undertaken in the field practice area of 55 villages of three Primary Health Centres in Villupuram District of Tamil Nadu. Study Design: An exploratory mixed-methods study design, where a qualitative method (key informant interview) was followed by a quantitative method (survey). Sample Size: A representative sample of 1300 respondents was selected by two-stage sampling. Analysis: Manual content analysis was done for qualitative data. Multiple logistic regression was performed on quantitative data. Results: The prevalence of dementia among study sample was found to be 3.1%. The determinants for dementia were age, sex, socioeconomic status, and previous involvement in family decision making and cardiovascular risk factors. The family caregivers strongly felt that caregiving interferes with their personal and professional life; they also felt that caregiving is an integral part of Indian culture, and the elderly prefer home-based care. Caregivers preferred government owned public health facility for medical care. All the responding caregivers strongly felt that they are not adequately trained in caregiving. Conclusions and Recommendations: Routine screening of elderly for early identification of dementia and its medical and social risk factors should be initiated in primary health care facility. Care of caregivers should be seen as an integral part of dementia care program. PMID:26962277

  9. Psychological Distress of Caregivers: The Mediator Effect of Caregiving Appraisal.

    ERIC Educational Resources Information Center

    Pot, A. M.; Deeg, D. J. H.; van Dyck, R.; Jonker, C.

    1998-01-01

    Examines whether the role of caregiving appraisal explains why stressors in the caregiving situation affect caregivers' psychological distress. Results show that for spouse caregivers, perceived pressure explains the association between their caregiving tasks and psychological distress. Results also show clear mediator effects of perceived…

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

    PubMed

    Zimmermann, Martina

    2013-02-12

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

  11. Paid caregiver motivation, work conditions, and falls among senior clients.

    PubMed

    Lindquist, Lee A; Tam, Karen; Friesema, Elisha; Martin, Gary J

    2012-01-01

    The purpose of this study was to determine the motivation of paid non-familial caregivers of seniors, understand more about their work conditions, and identify any links to negative outcomes among their senior clients. Ninety-eight paid caregivers (eighty-five female and thirteen male), recruited from multiple sites (i.e. senior centers, shopping malls, local parks, lobbies of senior apartments, caregiver agency meetings) completed face-to-face questionnaires and semi-structured interviews. We found that 60.7% of participants chose to become a caregiver because they enjoyed being with seniors while 31.7% were unable to obtain other work, and 8.2% stated it was a prerequisite to a different health related occupation. Caregivers stated that the most challenging conditions of their work were physical lifting (24.5%), behavioral and psychological symptoms of dementia (24.5%), senior depression/mood changes (18.4%), attachment with impending death (8.2%), missing injuries to client (5.1%), lack of sleep (4.1%), and lack of connection with outside world (3.1%). Caregivers who reported that the best part of their job was the salary, flexible hours, and ease of work were significantly more likely to have clients who fell and fractured a bone than those who enjoyed being with seniors (job characteristics, 62.5% vs. senior enjoyment, 25.6%; p<0.004). We concluded that in pursuing their occupation, paid caregivers are motivated commonly by their love of seniors and also by their lack of other job opportunities. Paid caregivers frequently face challenging work conditions. When seeking a caregiver for a senior, motivation of the caregiver should be considered when hiring. PMID:22360830

  12. Update on neuropsychiatric symptoms of dementia: evaluation and management.

    PubMed

    Kalapatapu, Raj K; Neugroschl, Judith A

    2009-04-01

    The neuropsychiatric symptoms of dementia can lead to a decreased quality of life, rapid cognitive decline, early patient institutionalization, tremendous caregiver burden, and increased cost of care. A thorough assessment to evaluate and treat any underlying causes of symptoms is essential. With the lack of an approved drug to treat the neuropsychiatric symptoms of dementia, nonpharmacologic interventions take on added importance. Behavioral management, cognitive stimulation therapy, and caregiver and health care staff education have shown the most promise to reduce symptom burden over the long term. The antipsychotic drugs have been the traditional choice of medications to treat the neuropsychiatric symptoms of dementia, but safety problems emerged with their use, leading to the issuance of label changes ("black box" warnings) by the Food and Drug Administration. Aside from antipsychotic drugs, multiple classes of medications have been tried to treat such symptoms but long-term data showing efficacy and safety are often lacking. PMID:19400596

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

    PubMed

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

    2015-05-01

    In the prospect of improved disease management and future clinical trials in Frontotemporal Dementia, it is desirable to share common diagnostic procedures. To this aim, the Italian FTD Network, under the aegis of the Italian Neurological Society for Dementia, has been established. Currently, 85 Italian Centers involved in dementia care are part of the network. Each Center completed a questionnaire on the local clinical procedures, focused on (1) clinical assessment, (2) use of neuroimaging and genetics; (3) support for patients and caregivers; (4) an opinion about the prevalence of FTD. The analyses of the results documented a comprehensive clinical and instrumental approach to FTD patients and their caregivers in Italy, with about 1,000 newly diagnosed cases per year and 2,500 patients currently followed by the participating Centers. In analogy to other European FTD consortia, future aims will be devoted to collect data on epidemiology of FTD and its subtypes and to provide harmonization of procedures among Centers. PMID:25528460

  14. Frontotemporal dementia: An updated overview

    PubMed Central

    Mohandas, E.; Rajmohan, V.

    2009-01-01

    Frontotemporal dementia (FTD) is a progressive neurodegenerative syndrome occurring between 45 and 65 years. The syndrome is also called frontotemporal lobar degeneration (FTLD). However, FTLD refers to a larger group of disorders FTD being one of its subgroups. The other subgroups of FTLD are progressive nonfluent aphasia (PFNA), and semantic dementia (SD). FTLD is characterized by atrophy of prefrontal and anterior temporal cortices. FTD occurs in 5-15% of patients with dementia and it is the third most common degenerative dementia. FTD occurs with equal frequency in both sexes. The age of onset is usually between 45 and 65 years though it may range anywhere from 21 to 81 years. The usual course is one of progressive clinicopathological deterioration with mortality within 6-8 years. Unlike Alzheimer’s disease (AD), this condition has a strong genetic basis and family history of FTD is seen in 40-50% of cases. FTD is a genetically complex disorder inherited as an autosomal dominant trait with high penetrance in majority of cases. Genetic linkage studies have revealed FTLD loci on chromosome 3p, 9, 9p, and 17q. The most prevalent genes are PGRN (progranulin) and MAPT (microtubule-associated protein tau), both located on chromosome 17q21. More than 15 different pathologies can underlie FTD and related disorders and it has four major types of pathological features: (1) microvacuolation without neuronal inclusions, (2) microvacuolation with ubiquitinated rounded intraneuronal inclusions and dystrophic neurites FTLD-ubiquitinated (FTLD-U), (3) transcortical gliosis with tau-reactive rounded intraneuronal inclusions, (4) microvacuolation and taupositive neurofibrillary tangles. Behavior changes are the most common initial symptom of FTD (62%), whereas speech and language problems are most common in NFPA (100%) and SD (58%). There are no approved drugs for the management of FTD and trials are needed to find effective agents. Non-pharmacological treatment and caregiver

  15. Frontotemporal dementia: An updated overview.

    PubMed

    Mohandas, E; Rajmohan, V

    2009-01-01

    Frontotemporal dementia (FTD) is a progressive neurodegenerative syndrome occurring between 45 and 65 years. The syndrome is also called frontotemporal lobar degeneration (FTLD). However, FTLD refers to a larger group of disorders FTD being one of its subgroups. The other subgroups of FTLD are progressive nonfluent aphasia (PFNA), and semantic dementia (SD). FTLD is characterized by atrophy of prefrontal and anterior temporal cortices. FTD occurs in 5-15% of patients with dementia and it is the third most common degenerative dementia. FTD occurs with equal frequency in both sexes. The age of onset is usually between 45 and 65 years though it may range anywhere from 21 to 81 years. The usual course is one of progressive clinicopathological deterioration with mortality within 6-8 years. Unlike Alzheimer's disease (AD), this condition has a strong genetic basis and family history of FTD is seen in 40-50% of cases. FTD is a genetically complex disorder inherited as an autosomal dominant trait with high penetrance in majority of cases. Genetic linkage studies have revealed FTLD loci on chromosome 3p, 9, 9p, and 17q. The most prevalent genes are PGRN (progranulin) and MAPT (microtubule-associated protein tau), both located on chromosome 17q21. More than 15 different pathologies can underlie FTD and related disorders and it has four major types of pathological features: (1) microvacuolation without neuronal inclusions, (2) microvacuolation with ubiquitinated rounded intraneuronal inclusions and dystrophic neurites FTLD-ubiquitinated (FTLD-U), (3) transcortical gliosis with tau-reactive rounded intraneuronal inclusions, (4) microvacuolation and taupositive neurofibrillary tangles. Behavior changes are the most common initial symptom of FTD (62%), whereas speech and language problems are most common in NFPA (100%) and SD (58%). There are no approved drugs for the management of FTD and trials are needed to find effective agents. Non-pharmacological treatment and caregiver

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

    PubMed

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

    2014-01-01

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

  17. Senile dementia.

    PubMed

    Terry, R D

    1978-12-01

    The Alzheimer type of senile dementia (SDAT) accounts for more than 50% of such cases, and is a very common disorder as well as being very costly in emotional, economic, and medical terms. It carries a markedly shortened life expectancy. Gray-to-white-matter ratios change and the brain shrinks slightly in the course of normal aging, but SDAT brains may not be significantly more atrophic than are normal controls. Cortical neurons are diminished in number in normal aging, but counts from frontal and midtemporal regions of SDAT specimens are not different from age-matched controls. There is loss of dendrites and of dendritic spines in both normal and abnormal aged specimens. Neurofibrillary tangles are made up of paired helical filaments that appear to be chemically and immunologically related to normal neurofibers. Neuritic plaques are made up of an amyloid core surrounded by abnormal axonal endings. Both plaques and tangles are to be correlated with the presence of senile dementia. There is some evidence for an infectious etiology of SDAT. Choline acetyltransferase is markedly reduced in cortical tissue of these patients, but the muscarinic receptors of acetylcholine are normal. PMID:720637

  18. Caring for the caregiver.

    PubMed

    2008-01-01

    Caring for the Caregiver is information for persons helping to care for people with cancer. The emphasis is on what caregivers can do to help themselves at this stressful time. Topics included are: Who Is a Caregiver, Your Feelings, Asking For Help, Caring for Yourself, Going With Your Loved One to Medical Visits, Talking With Others, Remember, Other Resources for Caregivers. The information is written on a basic level and it is very suitable for health professionals to share with persons helping to care for family members or friends who have cancer. The National Cancer Institute posted this information on its website last June 29. PMID:19062356

  19. Quality of life in young onset dementia: an updated systematic review.

    PubMed

    Baptista, Maria Alice Tourinho; Santos, Raquel Luiza; Kimura, Nathália; Lacerda, Isabel Barbeito; Johannenssen, Aud; Barca, Maria Lage; Engedal, Knut; Dourado, Marcia Cristina Nascimento

    2016-03-01

    Introduction Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers. Method This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL. Results People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective. Conclusion Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups. PMID:27074338

  20. Improving Doctor/Caregiver Communication

    MedlinePlus

    ... Month Friend: Living Independently Group Improving Doctor/ Caregiver Communications Helpful Ideas for Family Caregivers From NFCA There is much to be gained by improving communications between family caregivers and health care professionals, especially ...

  1. Thorstein Veblen and Dementia praecox.

    PubMed

    Sommer, Robert

    2007-01-01

    Both of Thorstein Veblen's wives and another woman he loved had nervous breakdowns, while a fourth woman to whom he was emotionally very close committed suicide. Yet when Veblen published an article entitled "Dementia praecox," he did not mention his personal contact with serious mental disorder. This detachment is consistent with Veblen's approach to writing. Veblen considered himself to be a detached observer who wrote objectively about society rather than subjectively about himself. PMID:17623868

  2. Personality traits as determinants of burden and health complaints in caregiving.

    PubMed

    Reis, M F; Gold, D P; Andres, D; Markiewicz, D; Gauthier, S

    1994-01-01

    This study tested predictions specifying the influence of caregiver personality traits on negative outcomes of caregiving, health complaints and burden. Two-hundred and thirteen caregivers, who were caring for family members with dementia, were interviewed and their relatives were assessed on cognitive status and aggression. At follow-up conducted twenty-four months later, forty-five caregivers were still continuing to provide home care for their dependents. Caregivers who scored higher on a measure of neuroticism experienced higher levels of burden and health complaints both at initial and follow-up assessment. Caregiver extraversion-introversion did not influence the experience of caregiving. At both initial and final assessment, the ability to enjoy some aspects of caregiving, recreational activities, and satisfaction with social support from family and friends mitigated negative outcomes of caregiving, while appraising the dependent as more troublesome increased negative outcomes. Caring for more cognitively impaired and more aggressive dependents and being female increased negative outcomes initially. Personality traits and most other study variables demonstrated significant continuity across time for caregivers continuing home care. PMID:7875917

  3. The experience of sons caring for a parent with dementia.

    PubMed

    McDonnell, Eilis; Ryan, Assumpta A

    2014-11-01

    This study explored the experiences of sons caring for a parent with dementia. Individual, semi-structured interviews were conducted with a purposeful sample of sons (n = 13) in a rural part of Ireland. Interviews were audiotaped, transcribed verbatim and analysed for common themes. The key themes that emerged were 'the parental bond', 'a binding role', 'coordinating care and support' and a 'getting on with it' approach to care. The study highlighted the commitment of sons to their caregiving role and the strong sense of duty that motivated them to provide care. The findings suggested that while many aspects of the caregiving experience such as lack of information and support are gender neutral, there are differences in the caregiving experiences of men and women in how they view their relationship with their parent and in the management of their caregiving role that merit further investigation. PMID:24339083

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

    ERIC Educational Resources Information Center

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

    2015-01-01

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

  5. Pharmacological management of behavioral symptoms associated with dementia

    PubMed Central

    Madhusoodanan, Subramoniam; Ting, Mark Bryan

    2014-01-01

    Dementia is a clinical syndrome with features of neurocognitive decline. Subtypes of dementia include Alzheimer’s, frontotemporal, Parkinson’s, Lewy body disease, and vascular type. Dementia is associated with a variety of neuropsychiatric symptoms that may include agitation, psychosis, depression, and apathy. These symptoms can lead to dangerousness to self or others and are the main source for caregiver burnout. Treatment of these symptoms consists of nonpharmacological and pharmacological interventions. However, there are no Food and Drug Administration-approved medications for the treatment of behavioral and psychological symptoms of dementia. Pharmacological interventions are used off-label. This article reviews the current evidence supporting or negating the use of psychotropic medications along with safety concerns, monitoring, regulations, and recommendations. PMID:25540722

  6. Personality and dementia.

    PubMed

    Cipriani, Gabriele; Borin, Gemma; Del Debbio, Alessandro; Di Fiorino, Mario

    2015-03-01

    Personality describes persistent human behavioral responses to broad classes of environmental stimuli. Change in personality may be an early sign of dementia. Our goal was to review scientific literature on the association between personality and dementia. Medline and Google Scholar searches were conducted for relevant articles, chapters, and books published since 1980. Search terms used included personality, dementia, Alzheimer's disease, frontotemporal dementia, dementia with Lewy bodies. People with dementia commonly exhibit changes in personality that sometimes precede the other early clinical manifestations of the condition, such as cognitive impairment. Premorbid personality might be a determining factor so that caricature or exaggeration of original personality emerges as dementia progresses. Although it is generally accepted that these personality changes reflect the impact of progressive brain damage, there are several possible patterns of personality alterations with dementia. Early identification of personality modifications might assist with the timely diagnosis of dementia. PMID:25714255

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

    PubMed Central

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

    2014-01-01

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

  8. Testing the psychometric properties of a Chinese version of Dementia Management Strategies Scale

    PubMed Central

    Chien, Wai Tong

    2015-01-01

    Caregiving stress and burden are universal phenomena among family caregivers of people with dementia. Family caregivers who adopted adaptive management strategies in dementia care could alleviate their own distress and the progression of neuropsychiatric symptoms in people with dementia. An understanding about the management strategies used by these caregivers in caring for their relatives with dementia would be crucial to family services in dementia care. This study aimed to validate a Chinese version of Dementia Management Strategies Scale (DMSS) in family caregivers of Hong Kong Chinese people with dementia. Face and content validity, semantic equivalence, and test–retest reliability of the translated Chinese version of 34-item DMSS were examined. A random sample of 211 family caregivers and their relatives with dementia were then recruited to identify the factor structure of the Chinese version by exploratory factor analysis followed by varimax rotation and assess its internal consistency. Reproductibility and responsiveness of the scale to changes in neuropsychiatric symptoms were also examined over a 6-month interval. Results indicated that the Chinese version of DMSS indicated very satisfactory content validity, semantic equivalence with the original English version, and test–retest reliability. Factor analysis showed that 32 items of the Chinese version had substantial loadings on one of the three identified factors (“Criticism toward older relative”, “Showing encouragement”, and “Active management strategies”), explaining 72.4% of the total variance. The three-factor Chinese version also indicated good internal consistency of its three subscales (Cronbach’s α=0.86–0.90) and satisfactory reproducibility over 6 months (intraclass correlation coefficients =0.85–0.89). Furthermore, the Chinese version demonstrated moderate effect sizes for detecting changes in symptom severity of dementia (Cohen’s d=0.50–0.60). This study provides

  9. Diabetes, Dementia and Hypoglycemia.

    PubMed

    Meneilly, Graydon S; Tessier, Daniel M

    2016-02-01

    We are experiencing an epidemic of both diabetes and dementia among older adults in this country. The risk for dementia appears to be increased in patients with diabetes, and patients with dementia and diabetes appear to be at greater risk for severe hypoglycemia. In addition, there may be an increased risk for developing dementia by older patients with diabetes who have had episodes of severe hypoglycemia, although this issue is controversial. In this article, we review the factors that contribute to the increased risk for dementia in older adults with diabetes and outline the complex relationships between hypoglycemia and dementia. PMID:26778684

  10. Anosognosia in Dementia.

    PubMed

    Wilson, Robert S; Sytsma, Joel; Barnes, Lisa L; Boyle, Patricia A

    2016-09-01

    Progressive decline in memory (and other functions) is the defining feature of late-life dementia but affected individuals are often unaware of this impairment. This article reviews recent research on anosognosia in dementia, including methods of assessing anosognosia, its prevalence and developmental course in dementia, its occurrence in different forms of dementia, neuroimaging findings, and hypothesized component mechanisms. The results suggest that anosognosia is eventually exhibited by nearly all persons with dementia. Its occurrence is robustly associated with common dementia-related pathologies and damage to memory and self-referential brain networks and their interconnections. PMID:27438597

  11. Testing family-centered, function-focused care in hospitalized persons with dementia

    PubMed Central

    Boltz, Marie; Chippendale, Tracy; Resnick, Barbara; Galvin, James E

    2015-01-01

    Summary Aim Hospital-acquired disability causes decreased quality of life for patients with dementia and family caregivers, and increased societal costs. Materials & methods A comparative, repeated measures study tested the feasibility and preliminary efficacy of the family-centered, function-focused care intervention (Fam-FFC) in dyads of hospitalized, medical patients with dementia and family caregivers (FCGs). Results The intervention group demonstrated better activities of daily living and walking performance, and less severity/duration of delirium and hospital readmissions, but no significant differences in gait/balance. FCGs showed increased preparedness for caregiving and less anxiety but no significant differences in depression, strain and mutuality. Conclusion Fam-FFC presents a possible pathway to meeting the Triple Aim of improved patient care, improved patient health and reduced costs for persons with dementia. PMID:26107319

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

    ERIC Educational Resources Information Center

    Sims-Gould, Joanie; Martin-Matthews, Anne

    2007-01-01

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

  13. More caregiving, less working: caregiving roles and gender difference.

    PubMed

    Lee, Yeonjung; Tang, Fengyan

    2015-06-01

    This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments. PMID:24652908

  14. Translating action research into practice: seeking occupational justice for people with dementia.

    PubMed

    O'Sullivan, Grace; Hocking, Clare

    2013-01-01

    Dementia is a critical social issue that contributes to, and is exacerbated by, occupational deprivation. This article reports the findings of an action research project undertaken to explore the daily activities of people who live with dementia in the community. Data were gathered by interviews, observations, and focus groups in community settings. The process of data gathering and analysis were reciprocally integrated. The participants, 11 people with mild to moderate dementia and their primary caregiver, prioritized the need to change the way dementia is perceived. Their rationale included other people's understanding of dementia and the social isolation they experience, resulting from a decline in opportunities to engage in daily activities. Occupational therapists have a significant role to play, encouraging and supporting people who live with dementia to maintain health and well-being by participating in occupations. Overcoming systemic issues that create barriers to occupation is vital. [OTJR: Occupation, Participation and Health 2013;33(3):168-176.]. PMID:24651902

  15. Sleep Disturbances in Frontotemporal Dementia.

    PubMed

    McCarter, Stuart J; St Louis, Erik K; Boeve, Bradley F

    2016-09-01

    Sleep disorders appear to be frequent comorbidities in patients with frontotemporal dementia (FTD). Insomnia and excessive daytime sleepiness commonly occur in patients with FTD and significantly contribute to caregiver burden and burnout. Sleep is severely fragmented in FTD patients, likely secondary to behavioral disturbances, other primary sleep disorders such as sleep disordered breathing and restless leg syndrome, and neurodegeneration of nuclei involved in sleep and wakefulness. Treatment of primary sleep disorders may improve excessive daytime sleepiness and sleep quality and may improve daytime cognitive functioning. Rapid eye movement (REM) sleep behavior disorder is rare in FTD and may be confused with excessive nocturnal activity due to disturbed circadian rhythm. The relationship between FTD, sleep quality, and sleep disorders requires further study to better understand the contribution of disturbed sleep to daytime neurocognitive functioning and quality of life in FTD. Further, future studies should focus on comparing sleep disturbances between different FTD syndromes, especially behavioral variant FTD and primary progressive aphasia. Comorbid sleep disorders should be promptly sought and treated in patients with FTD to improve patient and caregiver quality of life. PMID:27485946

  16. [Rehabilitation project and tele-monitoring of patients with mildly deteriorating cognition and their caregivers].

    PubMed

    Galante, E

    2009-01-01

    Dementia is a highly invalidating condition, constituting one of the major issues that health systems will face in future years. A great amount of research is focused on the looking out for effective therapies for dementia. Moreover, it is well-known that in the next thirty years the request for assistance and support services for patients will dramatically increase. It is also well-known that the perspective of institutionalization of demented patients is often source of anxiety and depression for caregivers. Telemedicine could provide an alternative option monitored by expert health operators and to caregivers the possibility to be supported in their assistance role. The project here presented entails a program of non-pharmacological treatment of cognitive and behavioural disturbances devoted to patients and caregivers, followed by a 12-months telemonitoring intervention, aimed at verifying compliance to treatments, offering constant support to caregivers and ensure patients and caregivers with a prompt access to operators of the Alzheimer Unit in case of sudden onset of health or assistance needs. It is expected that our combined cognitive-behavioural intervention devoted to patients and caregivers, followed by the 12-months telemonitoring program could produce many positive effects. In particular, we expect a slowing down of cognitive decline, a better control of behavioural disturbances and a delay in patients' institutionalization. Moreover, the accomplishment of improved information on disease and assistance options, and the reduction of caregivers' feelings of loneliness and hopelessness might engender the reduction of their anxiety and depression symptoms. PMID:19621541

  17. Effects of Video-Feedback Interaction Training for Professional Caregivers of Children and Adults with Visual and Intellectual Disabilities

    ERIC Educational Resources Information Center

    Damen, S.; Kef, S.; Worm, M.; Janssen, M. J.; Schuengel, C.

    2011-01-01

    Background: Individuals in group homes may experience poor quality of social interaction with their professional caregivers, limiting their quality of life. The video-based Contact programme may help caregivers to improve their interaction with clients. Method: Seventy-two caregivers of 12 individuals with visual and intellectual disabilities…

  18. Lewy Body Dementia Association

    MedlinePlus

    ... Related Organizations LBD stories submit a caregiver story forums Research Research Articles Research Abstracts Clinical Trials Resources ... support Patients and Caregiver Services LBD Stories Discussion Forums Local LBD Support Groups Virtual Groups We are ...

  19. Sexuality and Dementia

    MedlinePlus

    ... Search About FCA Mission and Values Programs and Services Overview Board and Staff Grants and Awards FCA Donors FCA History Jobs at FCA Caregiver Education Health Conditions Caregiving Issues and Strategies Fact and Tip Sheets Classes & Events FCA Webinars ...

  20. Factors Associated with Unmet Needs among African-American Dementia Care Providers

    PubMed Central

    Desin, PJ; Caban-Holt, AM; Abner, EL; Van Eldik, LJ; Schmitt, FA

    2016-01-01

    Racial and ethnic minorities currently comprise 20% of the U.S. population; in 2050, this figure is expected to rise to 42%. As a result, Alzheimer’s disease (AD), the 5th leading cause of death for people aged 65 and older, is likely to increase in these groups. Most dementia caregiving for these populations comes from family and friends, especially among families with lower socioeconomic status. A convenience sample of 30 African-American dementia caregivers was interviewed to determine unmet needs. Participants expressed a limited desire for formal services, such as support groups, legal advice, case management, and homemaker services. Instead, commonly expressed needs were daytime respite care and especially a desire for family and social support. Many caregivers expressed a need for other family members to share responsibility in the process; therefore, methods for caregiver support that address multiple family members in care provision may be beneficial for this group. PMID:27182464

  1. UPDATE ON DEMENTIA WITH LEWY BODIES

    PubMed Central

    Karantzoulis, Stella; Galvin, James E.

    2014-01-01

    Dementia with Lewy bodies (DLB) is the second most common form of dementia after Alzheimer disease (AD). DLB is characterized pathologically by Lewy body and Lewy neuritic pathology, often with variable levels of Alzheimer-type pathology. Core clinical features include fluctuating cognition, visual hallucinations, and parkinsonism resulting in greater impairments of quality of life, more caregiver burden, and higher health-related costs compared with AD. These issues, together with a high sensitivity to adverse events with treatment with antipsychotic agents, make the need for an early and accurate diagnosis of DLB essential. Unfortunately, current consensus criteria are highly specific but lack sufficient sensitivity. Use of composite risk scores may improve accuracy of clinical diagnosis. Imaging findings, particularly targeting dopaminergic systems have shown promise as potential markers to differentiate DLB from AD. A combination of non-pharmacologic treatments and pharmacotherapy interventions may maximize cognitive function and overall quality of life in DLB patients. PMID:25379359

  2. Dementia: Diagnosis and Tests

    MedlinePlus

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

  3. Lewy Body Dementia Diagnosis

    MedlinePlus

    ... individuals, it may also be due to the natural course of the disease. All Rights Reserved Lewy Body Dementia Association, Inc. 912 Killian Hill Road S.W., Lilburn, GA 30047 © 2016 Lewy Body Dementia Association, Inc. Connect ...

  4. Clinical-pathologic correlations in vascular cognitive impairment and dementia.

    PubMed

    Flanagan, Margaret; Larson, Eric B; Latimer, Caitlin S; Cholerton, Brenna; Crane, Paul K; Montine, Kathleen S; White, Lon R; Keene, C Dirk; Montine, Thomas J

    2016-05-01

    The most common causes of cognitive impairment and dementia are Alzheimer's disease (AD) and vascular brain injury (VBI), either independently, in combination, or in conjunction with other neurodegenerative disorders. The contribution of VBI to cognitive impairment and dementia, particularly in the context of AD pathology, has been examined extensively yet remains difficult to characterize due to conflicting results. Describing the relative contribution and mechanisms of VBI in dementia is important because of the profound impact of dementia on individuals, caregivers, families, and society, particularly the stability of health care systems with the rapidly increasing age of our population. Here we discuss relationships between pathologic processes of VBI and clinical expression of dementia, specific subtypes of VBI including microvascular brain injury, and what is currently known regarding contributions of VBI to the development and pathogenesis of the dementia syndrome. This article is part of a Special Issue entitled: Vascular Contributions to Cognitive Impairment and Dementia edited by M. Paul Murphy, Roderick A. Corriveau and Donna M. Wilcock. PMID:26319420

  5. Cognitive-Behavioral Treatment for Anxiety in Patients With Dementia

    PubMed Central

    KRAUS, CYNTHIA A.; SEIGNOUREL, PAUL; BALASUBRAMANYAM, VALLI; SNOW, A. LYNN; WILSON, NANCY L.; KUNIK, MARK E.; SCHULZ, PAUL E.; STANLEY, MELINDA A.

    2008-01-01

    Anxiety is common in dementia and is associated with decreased independence and increased risk of nursing home placement. However, little is known about the treatment of anxiety in dementia. This article reports results from two patients who were treated with a modified version of cognitive-behavioral therapy for anxiety in dementia (CBT-AD). Modifications were made in the content, structure, and learning strategies of CBT to adapt skills to the cognitive limitations of these patients and include collaterals (i.e., family members, friends, or other caregivers) in the treatment process. The patients received education and awareness training and were taught the skills of diaphragmatic breathing, coping self-statements, exposure, and behavioral activation. The Clinical Dementia Rating (CDR) Scale was used to characterize dementia severity and determine eligibility for treatment (a CDR score of 0.5 to 2.0 was required for participation). Other measures included the Rating Anxiety in Dementia scale, the Neuropsychiatric Inventory Anxiety subscale, and the Mini International Neuropsychiatric Interview. Outcome data showed improvement in anxiety as measured by standardized rating scales. We conclude that CBT-AD is potentially useful in treating anxiety in dementia patients and that this technique merits further study. PMID:18520790

  6. [Personality and Dementia].

    PubMed

    Masui, Yukie

    2016-07-01

    Previous studies have looked into the relationships between personality and dementia from three hypothetical points of views: 1) that personality type is a risk factor for dementia, 2) that personality changes occur before receiving a diagnosis of dementia, and 3) that premorbid personality traits define behavioral and psychological symptoms of dementia (BPSD) after receiving a diagnosis. This article overviews all three perspectives of the studies, after explaining the character and characteristic attributes of each perspective. PMID:27395463

  7. Cognitive Impairment and Dementia in Patients with Parkinson Disease

    PubMed Central

    Leverenz, James B.; Quinn, Joseph F.; Zabetian, Cyrus; Zhang, Jing; Montine, Kathleen S.; Montine, Thomas J.

    2009-01-01

    Parkinson disease (PD) is an already prevalent neurodegenerative disease that is poised to at least double over the next 25 years. Although best known for its characteristic movement disorder, PD is now appreciated commonly to cause cognitive impairment, including dementia, and behavioral changes. Dementia in patients with PD is consequential and has been associated with reduced quality of life, shortened survival, and increased caregiver distress. Here we review clinical presentation and progression, pathological bases, identification of genetic risk factors, development of small molecule biomarkers, and emerging treatments for cognitive impairment in patients with PD. PMID:19754405

  8. Care services for elderly people with dementia in rural China: a case study

    PubMed Central

    Wu, Christina; Gao, Lin; Chen, Shulin

    2016-01-01

    Abstract Objective To determine the state of the health and supportive services available to elderly people with dementia – and their families – in rural Lanxi county, in the province of Zhejiang, China. Methods In November 2014 and January 2015, we interviewed 14 key informants on dementia care face-to-face, using a semi-structured questionnaire. The informants included three rural physicians, an urban geriatrician, seven directors of institutions for the care of the elderly and three officials of the civil affairs bureau. We also completed in-depth interviews with five family caregivers of elderly people with dementia. Findings The interviewees indicated that there was a lack of specialized services designed specifically to address the needs of individuals with dementia and their family members. Non-psychiatric medical services and the available facilities for long-term care appeared to be ill-equipped to manage these needs. They lacked both clinical staff and standardized, evidence-based practices for the diagnosis, care, treatment and rehabilitation of patients with dementia. As care facilities often refused to admit elderly people with dementia, families were generally forced to care for elderly relatives with dementia at home. Conclusion In Lanxi county – and probably in much of rural China – more public resources are needed to support family caregivers and to improve the capacity of care facilities for the elderly to care for individuals with dementia. PMID:26966327

  9. Alzheimer's disease and vascular dementia: one potentially preventable and modifiable disease? Part II: Management, prevention and future perspective.

    PubMed

    Davey, Dennis A

    2014-01-01

    The management of dementia and mild cognitive impairment (MCI) includes pharmacological, nonpharmacological and caregiver interventions. Acetyl-cholinesterase inhibitors and memantine have a small beneficial effect in mild-to-moderate dementia. Attention is increasingly focused on long-term measures that may prevent, delay or minimize MCI and dementia, including Mediterranean diet, exercise, early active treatment of hypercholesterolaemia hypertension, and diabetes starting in midlife and earlier. High cognitive activity and a high cognitive reserve may prevent or delay the onset of aging-related MCI and dementia. Although the numbers of the elderly with dementia are rapidly increasing worldwide, the incidence of dementia in some countries is decreasing attributable to higher educational levels, decreased vascular risk factors and healthier lifestyles. Prevention of dementia is feasible and reasonable. PMID:25095820

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

    ERIC Educational Resources Information Center

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

    2009-01-01

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

  11. The CARE pathway model for dementia: psychosocial and rehabilitative strategies for care in young-onset dementias.

    PubMed

    Morhardt, Darby; Weintraub, Sandra; Khayum, Becky; Robinson, Jaimie; Medina, Jennifer; O'Hara, Mary; Mesulam, Marsel; Rogalski, Emily J

    2015-06-01

    The goal of the Care Pathway Model for Dementia (CARE-D) is to improve quality of life and daily functioning both for individuals diagnosed with dementia and for their families or other caregivers. This is accomplished by developing individualized recommendations focused on a person's strengths and weaknesses as determined by formal neurocognitive and psychosocial evaluations. Careful attention is given to the stage of illness and an individual's stage in life, to connecting families with services that target an individual's cognitive and behavioral symptoms, and to providing education and emotional support specific to symptoms, clinical diagnosis, and prognosis. PMID:25998120

  12. Caregiver Health and Wellness

    MedlinePlus

    ... content was developed with general underwriting support from Nature Made®. ... Caregiver stress fact sheet by U.S. Department of Health and Human Services, Office on Women’s Health ( April 10, 2012, ...

  13. Long Distance Caregiving

    MedlinePlus

    ... Navigation Bar Home Current Issue Past Issues Feature: Senior Living Long Distance Caregiving Past Issues / Summer 2009 ... when a crisis occurs. Get a directory of senior resources and services from the local library or ...

  14. Caregivers and Serious Illness

    MedlinePlus

    ... index. aspx National Respite Locator Information on respite services in your community http: / / archrespite. org/ respitelocator Healthfinder.gov Basic tips and strategies for caregivers http: / / www. healthfinder. gov/ HealthTopics/ Category/ ...

  15. THE ASSESSMENT OF CAREGIVER BURDEN IN CAREGIVERS OF HEMODIALYSIS PATIENTS

    PubMed Central

    Mashayekhi, Fatemeh; Pilevarzadeh, Motahareh; Rafati, Foozieh

    2015-01-01

    Background: Chronic renal failure is among the chronic disease which due to persistence of the disease and long treatment process has various effects on the physiological, psychological, functional ability, lifestyle changes, and independence status of the patient and his family. This may result in the burden feeling in caregivers. According to the importance of the subject, this study is to assess the level of caregiver burden in caregivers of hemodialysis patients. Methods: This is a cross-sectional analytical descriptive study that was conducted in 2014 on the caregivers of hemodialysis patients. Research instruments were consisted of two parts: demographic data check list and caregiver burden questionnaire. Data were analyzed by SPSS statistical software and Pearson correlation coefficient tests. A p value of less than 0.05 was considered statistically significant. Results: In this study, 72.5% of caregivers reported moderate to severe levels of caregiver burden. A significant relationship was observed between gender of the patient with caregiver burden score of (p=0.031) and type of the income with caregiver burden score of (p=0.000). Caregivers of male patients and patients with inadequate income had a higher caregiver burden score. Conclusions: Our results showed that more than half of the caregivers of hemodialysis patients had moderate to severe levels of caregiver burden, therefore it is worthy that health officials and nurses pay special attention to this issue by communicating with these patients and their caregivers. PMID:26622201

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

    PubMed Central

    2013-01-01

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

  17. The burden of dementia.

    PubMed

    Cotter, Valerie T

    2007-12-01

    Dementia care is a significant and growing healthcare need that will have major economic and medical impact as the prevalence of Alzheimer's disease (AD) and related dementias continues to increase in the United States during the next 50 years. The ability to differentiate the signs and symptoms of the most common dementing illnesses - AD, vascular dementia, frontotemporal dementia, and dementia with Lewy bodies - is essential to dementia care and management. Additionally, dementia patients in longterm care (LTC) facilities are prone to significantly greater risk of negative outcomes compared with nondemented residents as a result of a decline in activities of daily living, physical capacities, and behavioral manifestations. Careful and active assessment of risk factors and their management provides opportunities for improving outcomes. These include behavioral manifestations of pain, wandering, and risks of malnutrition, falls and injuries, and restraint use. Specific nonpharmacologic interventions to promote restraint- and pain-free care in LTC are highlighted. PMID:18095782

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

    PubMed Central

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

    2016-01-01

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

  19. Caregiving, bereavement and complicated grief

    PubMed Central

    Boerner, Kathrin; Schulz, Richard

    2010-01-01

    Most deaths are preceded by chronic illness and disability and the provision of support by family caregivers. The purpose of this article is to describe how the caregiving experience affects bereavement, with an emphasis on the relationship between challenging caregiving situations and difficult grieving processes – often referred to as `complicated grief'. The article starts with a brief summary of the general literature on caregiving and bereavement. It then defines complicated grief and discusses why some caregivers may struggle with the death of their loved one. Finally, it offers practical suggestions for what professionals can do to help caregivers both before and after the death has occurred. PMID:20463850

  20. Descriptive Analyses of Caregiver Reprimands

    PubMed Central

    2005-01-01

    We conducted descriptive observations of 5 individuals with developmental disabilities and severe problem behavior while they interacted with their caregivers in either simulated environments (an inpatient hospital facility) or in their homes. The focus of the study was on caregiver reprimands and child problem behavior. Thus, we compared the frequency of problem behavior that immediately preceded a caregiver reprimand to that immediately following a caregiver reprimand, and the results showed that the frequency of problem behavior decreased following a reprimand. It is possible that caregiver reprimands are negatively reinforced by the momentary attenuation of problem behavior, and the implications for long- and short-term effects on caregiver behavior are discussed. PMID:16270846

  1. Recruiting and retaining family caregivers to a randomized controlled trial on mindfulness-based stress reduction.

    PubMed

    Whitebird, Robin R; Kreitzer, Mary Jo; Lewis, Beth A; Hanson, Leah R; Crain, A Lauren; Enstad, Chris J; Mehta, Adele

    2011-09-01

    Caregivers for a family member with dementia experience chronic long-term stress that may benefit from new complementary therapies such as mindfulness-based stress reduction. Little is known however, about the challenges of recruiting and retaining family caregivers to research on mind-body based complementary therapies. Our pilot study is the first of its kind to successfully recruit caregivers for a family member with dementia to a randomized controlled pilot study of mindfulness-based stress reduction. The study used an array of recruitment strategies and techniques that were tailored to fit the unique features of our recruitment sources and employed retention strategies that placed high value on establishing early and ongoing communication with potential participants. Innovative recruitment methods including conducting outreach to health plan members and generating press coverage were combined with standard methods of community outreach and paid advertising. We were successful in exceeding our recruitment goal and retained 92% of the study participants at post-intervention (2 months) and 90% at 6 months. Recruitment and retention for family caregiver interventions employing mind-body based complementary therapies can be successful despite many challenges. Barriers include cultural perceptions about the use and benefit of complementary therapies, cultural differences with how the role of family caregiver is perceived, the use of group-based designs requiring significant time commitment by participants, and travel and respite care needs for busy family caregivers. PMID:21601010

  2. Behavioral and Psychological Symptoms of Dementia

    PubMed Central

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

    2012-01-01

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

  3. Music and dementia.

    PubMed

    Baird, Amee; Samson, Séverine

    2015-01-01

    There is an increasing incidence of dementia in our aging population, and consequently an urgent need to develop treatments and activities that may alleviate the symptoms of dementia. Accumulating evidence shows that persons with dementia enjoy music, and their ability to respond to music is potentially preserved even in the late or severe stages of dementia when verbal communication may have ceased. Media interest in this topic has contributed to the public perception that music abilities are an "island of preservation" in an otherwise cognitively impaired person with dementia. In this chapter, we review the current literature on music cognition in dementia and show that there has been very scarce rigorous scientific investigation of this issue, and that various types of music memory exist and are differentially impaired in the different types of dementia. Furthermore, we discuss the recent development of music activities as a nonpharmacological treatment for dementia and highlight the methodological limitations of the current literature on this topic. While it has been reported that music activities can improve behavior, (particularly agitation), mood, and cognition in persons with dementia, recent large-scale randomized control studies have questioned the specificity of the effect of music and found that it is no more beneficial than other pleasant activities. Nevertheless, music is unique in its powerful ability to elicit both memories and emotions. This can provide an important link to individual's past and a means of nonverbal communication with carers, which make it an ideal stimulus for persons with dementia. PMID:25725917

  4. Informal caregiving for seniors.

    PubMed

    Turner, Annie; Findlay, Leanne

    2012-09-01

    Based on data from the 2008/2009 Canadian Community Health Survey-Healthy Aging, this study examines the characteristics of people aged 45 or older who reported caring for a senior. It also describes the nature of the care provided and the positive and negative aspects of caregiving. More than one-third (35%) of Canadians aged 45 or older reported caring for a senior with a short- or long-term health condition or limitation. Compared with non-caregivers, those providing care to a senior were more likely to be women. They tended to be younger and more likely to live in higher-income households and to be postsecondary graduates. More than half the people receiving care were parents or parents-in-law, and they usually did not live with the caregiver. The most common form of care provided was transportation. A third of caregivers had been providing assistance for at least five years. Virtually all (95%) of them reported positive aspects of caregiving, but more than half (56%) experienced challenges and difficulties. PMID:23061262

  5. Diagnosis and management of dementia in primary care

    PubMed Central

    Parmar, Jasneet; Dobbs, Bonnie; McKay, Rhianne; Kirwan, Catherine; Cooper, Tim; Marin, Alexandra; Gupta, Nancy

    2014-01-01

    Abstract Objective To assess the current identification and management of patients with dementia in a primary care setting; to determine the accuracy of identification of dementia by primary care physicians; to examine reasons (triggers) for referral of patients with suspected dementia to the geriatric assessment team (GAT) from the primary care setting; and to compare indices of identification and management of dementia between the GAT and primary care network (PCN) physicians and between the GAT and community care (CC). Design Retrospective chart review and comparisons, based on quality indicators of dementia care as specified in the Third Canadian Consensus Conference on the Diagnosis and Treatment of Dementia, were conducted from matching charts obtained from 3 groups of health care providers. Setting Semirural region in the province of Alberta involving a PCN, CC, and a GAT. Participants One hundred patients who had been assessed by the GAT randomly selected from among those diagnosed with dementia or mild cognitive impairment by the GAT. Main outcome measures Diagnosis of dementia and indications of high-quality dementia care listed in PCN, CC, and GAT charts. Results Only 59% of the patients diagnosed with dementia by the GAT had a documented diagnosis of dementia in their PCN charts. None of the 12 patients diagnosed with mild cognitive impairment by the GAT had been diagnosed by the PCN. Memory decline was the most common reason for referral to the GAT. There were statistically significant differences between the PCN and the GAT on all quality indicators of dementia, with underuse of diagnostic and functional assessment tools and lack of attention to wandering, driving, medicolegal, and caregiver issues, and underuse of community supports in the PCN. There was higher congruence between CC and the GAT on assessment and care indices. Conclusion Dementia care remains a challenge in primary care. Within our primary care setting, there are opportunities for

  6. Role Expectations in Dementia Care Among Family Physicians and Specialists

    PubMed Central

    Hum, Susan; Cohen, Carole; Persaud, Malini; Lee, Joyce; Drummond, Neil; Dalziel, William; Pimlott, Nicholas

    2014-01-01

    Background The assessment and ongoing management of dementia falls largely on family physicians. This pilot study explored perceived roles and attitudes towards the provision of dementia care from the perspectives of family physicians and specialists. Methods Semi-structured, one-to-one interviews were conducted with six family physicians and six specialists (three geriatric psychiatrists, two geriatricians, and one neurologist) from University of Toronto-affiliated hospitals. Transcripts were subjected to thematic content analysis. Results Physicians’ clinical experience averaged 16 years. Both physician groups acknowledged that family physicians are more confident in diagnosing/treating uncomplicated dementia than a decade ago. They agreed on care management issues that warranted specialist involvement. Driving competency was contentious, and specialists willingly played the “bad cop” to resolve disputes and preserve long-standing therapeutic relationships. While patient/caregiver education and support were deemed essential, most physicians commented that community resources were fragmented and difficult to access. Improving collaboration and communication between physician groups, and clarifying the roles of other multi-disciplinary team members in dementia care were also discussed. Conclusions Future research could further explore physicians’ and other multi-disciplinary members’ perceived roles and responsibilities in dementia care, given that different health-care system-wide dementia care strategies and initiatives are being developed and implemented across Ontario. PMID:25232368

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

    ERIC Educational Resources Information Center

    Rhode Island State Dept. of Elderly Affairs, Providence.

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

  8. Behavior management approach for agitated behavior in Japanese patients with dementia: a pilot study

    PubMed Central

    Sato, Junko; Nakaaki, Shutaro; Torii, Katsuyoshi; Oka, Mizuki; Negi, Atsushi; Tatsumi, Hiroshi; Narumoto, Jin; Furukawa, Toshi A; Mimura, Masaru

    2013-01-01

    Background Agitated behaviors are frequently observed in patients with dementia and can cause severe distress to caregivers. However, little evidence of the efficacy of nonpharmacological interventions for agitated behaviors exists for patients with dementia. The present pilot study aimed to evaluate a behavioral management program developed by the Seattle Protocols for patients with agitated behaviors in Japan. Methods Eighteen patients with dementia (Alzheimer’s disease, n = 14; dementia with Lewy bodies, n = 4) participated in an open study testing the effectiveness of a behavioral management program. The intervention consisted of 20 sessions over the course of 3 months. The primary outcomes were severity of agitation in dementia, as measured using the Agitated Behavior in Dementia scale (ABID) and the Cohen-Mansfield Agitation Inventory (CMAI). Results The behavioral management program resulted in significant reductions in total scores on both the ABID and CMAI. Although both physically agitated and verbally agitated behavior scores on the ABID improved significantly, symptoms of psychosis did not improve after the intervention. Conclusion The behavioral management technique may be beneficial to distressed caregivers of patients with dementia. In the future, a well designed study to develop the behavioral management program more fully is needed. PMID:23293522

  9. Stress Relief for the Caregiver

    MedlinePlus

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

  10. Roles for the Family Caregiver

    MedlinePlus

    ... Communicator The family caregiver has many roles besides giving the patient hands-on care. Most people think ... caregiver becomes an advocate for the patient by giving this information to the health care team. Although ...

  11. Family Caregivers in Cancer (PDQ)

    MedlinePlus

    ... Communicator The family caregiver has many roles besides giving the patient hands-on care. Most people think ... caregiver becomes an advocate for the patient by giving this information to the health care team. Although ...

  12. [Exploration of Eating Difficulties of Patients With Dementia].

    PubMed

    Wang, Shou-Na; Chang, Chia-Chi; Lee, Pi-Hsia

    2016-08-01

    The number of people living with dementia is growing as the average age of the population rises. Eating difficulties are a common problem for dementia patients and their caregivers. The etiology of these difficulties is often complicated. Weight loss, poor nutrition, aspiration pneumonia, and associated medical admissions or even mortality may occur as soon as an eating difficulty develops. This paper presents a literature review of the eating difficulties of dementia patients. The process of eating involves four stages: recognizing food, taking food into the mouth, chewing, and swallowing. We discuss the causes and clinical manifestations of eating difficulties at each of these stages and introduce an intervention for overcoming eating difficulties, aiming at providing choices of methods to improve eating behavior. The author hopes that this review will help medical personnel / caregivers enhance their understanding of the etiology and the clinical manifestation of eating difficulties in dementia patients, evaluate the overall condition of their patient(s), and provide an appropriate intervention in order to help these patients experience the most comfortable and non-invasive ways of eating or feeding, improve their quality of eating, and realize with their family improved spiritual well-being. PMID:27492304

  13. Disease-modifying therapeutic directions for Lewy-Body dementias

    PubMed Central

    Zhang, Qiang; Kim, Young-Cho; Narayanan, Nandakumar S.

    2015-01-01

    Dementia with Lewy bodies (DLB) is the second leading cause of dementia following Alzheimer's disease (AD) and accounts for up to 25% of all dementia. DLB is distinct from AD in that it involves extensive neuropsychiatric symptoms as well as motor symptoms, leads to enormous societal costs in terms of direct medical care and is associated with high financial and caregiver costs. Although, there are no disease-modifying therapies for DLB, we review several new therapeutic directions in treating DLB. We discuss progress in strategies to decrease the level of alpha-synuclein, to prevent the cell to cell transmission of misfolded alpha-synuclein, and the potential of brain stimulation in DLB. PMID:26347604

  14. Disease-modifying therapeutic directions for Lewy-Body dementias.

    PubMed

    Zhang, Qiang; Kim, Young-Cho; Narayanan, Nandakumar S

    2015-01-01

    Dementia with Lewy bodies (DLB) is the second leading cause of dementia following Alzheimer's disease (AD) and accounts for up to 25% of all dementia. DLB is distinct from AD in that it involves extensive neuropsychiatric symptoms as well as motor symptoms, leads to enormous societal costs in terms of direct medical care and is associated with high financial and caregiver costs. Although, there are no disease-modifying therapies for DLB, we review several new therapeutic directions in treating DLB. We discuss progress in strategies to decrease the level of alpha-synuclein, to prevent the cell to cell transmission of misfolded alpha-synuclein, and the potential of brain stimulation in DLB. PMID:26347604

  15. Development of the Knowledge of Dementia Competencies Self-Assessment Tool.

    PubMed

    Curyto, Kimberly J; Vriesman, Deedre K

    2016-02-01

    Competent dementia care requires caregivers with specialized knowledge and skills. The Knowledge of Dementia Competencies Self-Assessment Tool was developed to help direct care workers (DCWs) assess their knowledge of 7 dementia competencies identified by the Michigan Dementia Coalition. Item selection was guided by literature review and expert panel consultation. It was given to 159 DCWs and readministered to 57 DCWs in a range of long-term care settings and revised based on qualitative feedback and statistical item analyses, resulting in 82 items demonstrating good internal consistency and test-retest reliability. Performance on items assessing competencies rated as most important was significantly related to training in these competencies. The DCWs in day care obtained higher scores than those in home care settings, and their sites reported a greater number of hours of dementia training. Validation in a more diverse group of DCWs and assessing its relationship to other measures of knowledge and skill is needed. PMID:26006789

  16. Barriers to excellent end-of-life care for patients with dementia.

    PubMed

    Sachs, Greg A; Shega, Joseph W; Cox-Hayley, Deon

    2004-10-01

    While great strides have been made recently in improving end-of-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population. PMID:15482560

  17. Who steers the ship? Rural family physicians' views on collaborative care models for patients with dementia.

    PubMed

    Kosteniuk, Julie; Morgan, Debra; Innes, Anthea; Keady, John; Stewart, Norma; D'Arcy, Carl; Kirk, Andrew

    2014-01-01

    Little is known about the views of rural family physicians (FPs) regarding collaborative care models for patients with dementia. The study aims were to explore FPs' views regarding this issue, their role in providing dementia care, and the implications of providing dementia care in a rural setting. This study employed an exploratory qualitative design with a sample of 15 FPs. All rural FPs indicated acceptance of collaborative models. The main disadvantages of practicing rural were accessing urban-based health care and related services and a shortage of local health care resources. The primary benefit of practicing rural was FPs' social proximity to patients, families, and some health care workers. Rural FPs provided care for patients with dementia that took into account the emotional and practical needs of caregivers and families. FPs described positive and negative implications of rural dementia care, and all were receptive to models of care that included other health care professionals. PMID:23552172

  18. Methodological issues in a cost-of-dementia study in Belgium: the NAtional Dementia Economic Study (NADES).

    PubMed

    Kurz, X; Broers, M; Scuvée-Moreau, J; Salmon, E; Ventura, M; Pepin, J L; Dom, R; Franck, G; Dresse, A

    1999-09-01

    The NAtional Dementia Economic Study (NADES) is an on-going prospective, one-year cohort study developed in Belgium to assess the socio-economic consequences of dementia in a group of patients and their caregivers (n = 400). Comparison is made with a group of subjects with cognitive impairment and no dementia (n = 100) and a group of subjects without any cognitive impairment (n = 100). Recruitment of subjects is based on screening of warning signs of dementia by general practitioners, followed by a Cambridge Mental Disorders of the Elderly Examination (CAMDEX) performed at home. This paper presents an overview of the study protocol and the rationale for basic design options, such as the choice of study population, screening strategy, and methods used for the case validation. It also presents preliminary results on the prevalence of dementia in general practice, the sensitivity and specificity of the warning signs as a screening test of dementia, and the validity of a computerised case ascertainment algorithm based on DSM-III-R criteria. PMID:10544724

  19. [Carotid atherosclerosis and dementia].

    PubMed

    Harlé, Louise-Marine; Plichart, Matthieu

    2015-09-01

    Over the past decade a growing interest has been devoted to exploring the role of atherosclerosis in the development of dementia. Despite a well-known association between atherosclerosis risk factors in middle-life with later cognitive decline, the pathophysiological pathways underlying this association remain unclear. The current hypothesis is that neurodegenerative and vascular lesions coexist and have a synergistic role in the development of cognitive impairment and dementia. Carotid atherosclerosis (e.g. carotid plaques and intima-media thickness as measured by carotid ultrasonography) has been associated with cognitive decline and dementia and may help to better understand the complex interaction between the vascular and neurodegenerative processes. Furthermore, carotid atherosclerosis has been used in the recent field for dementia risk prediction. In this review, we discuss the physiopathological implications from the current available data on the relationship between carotid atherosclerosis and dementia as well as the interest of carotid biomarkers for individual dementia risk prediction. PMID:26395304

  20. [Measurement of activities of daily living in patients with dementia living at home: development of a questionnaire].

    PubMed

    Teunisse, S; Derix, M M

    1991-04-01

    In clinical practice and for scientific research a method is needed for the assessment of changes in functioning in daily life of dementia patients living at home. As existing methods have their limitations, a questionnaire was developed (the Interview for Deterioration in Daily life in Dementia: IDDD), to be answered by caregivers. The questionnaire concerns self-care and complex activities, that are usually performed by men as well as women. Attention is paid to the difference between lack of initiative and impaired performance itself. Caregivers are interviewed in a structured interview. A study among 30 caregivers of dementia patients living at home, showed the relevance and usefulness of the questions. The questionnaire shows high internal consistency, which may be the result of our structured interview technique. PMID:2042235

  1. Caregiving: A Qualitative Concept Analysis

    ERIC Educational Resources Information Center

    Hermanns, Melinda; Mastel-Smith, Beth

    2012-01-01

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

  2. Exploring functions of the lost seeking devices for people with dementia.

    PubMed

    Chen, Yung-Ching; Leung, Cherng-Yee

    2012-01-01

    This paper utilized a user-centered design approach as the foundation for technology in dementia care in order to improve the quality of telemedicine service. A status-quo analysis and questionnaire survey were conducted to explore the actual needs of the elders in using the lost seeking devices and the problems they encountered. In total, 37 caregivers for people with dementia were surveyed (20 female, 17 male, M = 50.08, SD = 15.47). The dementia-patients: 16 are male, 21 female (M = 72.75, SD = 10.23). Through analysis and induction, 3 problems were identified: poor information transmission, low user acceptance, individual material security anxiety. 2-4 improvement proposals are suggested for each problem. Most care-givers hope technological products would increase the efficiency and safety, but they also think it's too expensive and lack of computer skills. This result demonstrates the choice of seeking methods depends on the education level of the caregivers and most of them are elders. The concern of data leakage is also related to today's fraud issue, which may be the reason limiting the promotion of electronic products and biometrics. Further research is required, suggesting researchers should pursue improvements in lost seeking design devices in dementia for caregivers. PMID:22317189

  3. Beliefs about Promoting Cognitive Health among Filipino Americans Who Care for Persons with Dementia

    ERIC Educational Resources Information Center

    Laditka, Sarah B.; Tseng, Winston; Price, Anna E.; Ivey, Susan L.; Friedman, Daniela B.; Liu, Rui; Wu, Bei; Logsdon, Rebecca G.; Beard, Renee L.

    2012-01-01

    We examined beliefs about promoting cognitive health among Filipino Americans who care for persons with dementia, their awareness of media information about cognitive health, and their suggestions for communicating such information to other caregivers. We conducted three focus groups (25 participants). The constant comparison method compared…

  4. Mental Health Correlates of Aggression in Nursing Home Residents with Dementia

    ERIC Educational Resources Information Center

    Talerico, Karen Amann; Evans, Lois K.; Strumpf, Neville E.

    2002-01-01

    Purpose: Aggression continues to challenge caregivers of persons with dementia, and identification of foci for effective interventions is needed. The purpose of this study was to examine the influence of (a) the resident characteristics of depression, communication, and cognition and (b) behavior management strategies on aggression in a group of…

  5. Immunologically Mediated Dementias

    PubMed Central

    Rosenbloom, Michael H.; Smith, Sallie; Akdal, Gulden; Geschwind, Michael D.

    2009-01-01

    Although most dementias are due to neurodegenerative or vascular disease, it is important to diagnose immunologically mediated dementias quickly because they can be both rapidly progressive and readily treatable. They usually affect function of limbic and cortical structures, but subcortical involvement can also occur. Because of the variety of symptoms and the rapid course, these dementias present a particular challenge to the clinician and may require evaluation and intervention in the inpatient setting. Diagnostic workup typically reveals evidence of an autoimmune process and, in some cases, cancer. In contrast to the neurodegenerative processes, many of the immunologically mediated dementias respond to immunomodulatory therapy. PMID:19664365

  6. Sexual disinhibition and dementia.

    PubMed

    Cipriani, Gabriele; Ulivi, Martina; Danti, Sabrina; Lucetti, Claudio; Nuti, Angelo

    2016-03-01

    To describe inappropriate sexual behaviour (ISB) observed in patients with dementia, we conducted searches using the Cochrane Library, PubMed, and Web of Science to find relevant articles, chapters, and books published from 1950 to 2014. Search terms used included 'hypersexuality', 'inappropriate sexual behaviors', and 'dementia'. Publications found through this indexed search were reviewed for further relevant references. Sexuality is a human's need to express intimacy, but persons with dementia may not know how to appropriately meet their needs for closeness and intimacy due to their decline in cognition. Generally, the interaction among brain, physical, psychological, and environmental factors can create what we call ISB. The most likely change in the sexual behaviour of a person with dementia is indifference. However, ISB in dementia appear to be of two types--intimacy-seeking and disinhibited--that differ in their association with dementia type, dementia severity and, possibly, other concurrent behavioural disorder. Tensions develop from uncertainties regarding which, or when, behaviours are to be considered 'inappropriate' (i.e. improper) or abnormal. While most ISB occur in the moderate to severe stages of Alzheimer's dementia, they may also be seen in early stages of frontotemporal dementia because of the lack of insight and disinhibition. ISB are often better managed by non-pharmacological means, as patients may be less responsive to psychoactive therapies, but non-pharmacological interventions do not always stop the behaviour. PMID:26215977

  7. Dementia Still Diagnosed Too Late — Data from the Czech Republic

    PubMed Central

    LUZNY, Jan; HOLMEROVA, Iva; WIJA, Petr; ONDREJKA, Igor

    2014-01-01

    Abstract Background The goal of the study is to evaluate the sensitivity of Czech physicians to the early diagnosis of dementia in patients with memory impairment. Methods A retrospective observational study was designed. We have reviewed the electronic medical records of patients who have been hospitalized for the first time due to dementia of any type at the Kromeriz Mental hospital from January 1, 2012 to December 31, 2013 (24-month period). Pluralistic methods combining the qualitative and quantitative approach were used in this study. Results Dementia of any type was diagnosed in 125 patients in the monitored period. The mean time between patient memory complaints and his / her admission to our facility for their first hospitalization due to dementia was 7.1 years (+- 3.7 years). Most patients with dementia had no prior outpatient treatment of their memory impairment (56.2%); a minority of patients (43.8%) had treatment of their memory impairment by an outpatient physician. Conclusion The sensitivity of Czech physicians to the early diagnosis of dementia is very low. Any delay in starting the treatment of dementia means a worsened effectiveness of this treatment, a worsened quality of life of patients with dementia and their caregivers. Our recommendations for both the early diagnosis and treatment of dementia should be involved in guidelines and should become a part of the pregraduate and postgraduate education of all physicians. PMID:26060706

  8. 77 FR 50548 - Agency Information Collection: (PACT Qualitative Evaluation: Patient & Caregiver Interviews...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-08-21

    ... AFFAIRS Agency Information Collection: (PACT Qualitative Evaluation: Patient & Caregiver Interviews... & Caregiver). FOR FURTHER INFORMATION CONTACT: Denise McLamb, Enterprise Records Service (005R1B), Department... or email: denise.mclamb@va.gov . Please refer to ``OMB Control No. 2900-New (Patient &...

  9. Dementia Care: Confronting Myths in Clinical Management.

    PubMed

    Neitch, Shirley M; Meadows, Charles; Patton-Tackett, Eva; Yingling, Kevin W

    2016-01-01

    Every day, patients with dementia, their families, and their physicians face the enormous challenges of this pervasive life-changing condition. Seeking help, often grasping at straws, victims, and their care providers are confronted with misinformation and myths when they search the internet or other sources. When Persons with Dementia (PWD) and their caregivers believe and/or act on false information, proper treatment may be delayed, and ultimately damage can be done. In this paper, we review commonly misunderstood issues encountered in caring for PWD. Our goal is to equip Primary Care Practitioners (PCPs) with accurate information to share with patients and families, to improve the outcomes of PWD to the greatest extent possible. While there are innumerable myths about dementia and its causes and treatments, we are going to focus on the most common false claims or misunderstandings which we hear in our Internal Medicine practice at Marshall Health. We offer suggestions for busy practitioners approaching some of the more common issues with patients and families in a clinic setting. PMID:27025116

  10. Bias Against Caregiving

    ERIC Educational Resources Information Center

    Drago, Robert; Colbeck, Carol; Stauffer, Kai Dawn; Pirretti, Amy; Burkum, Kurt; Fazioli, Jennifer; Lazarro, Gabriela; Habasevich, Tara

    2005-01-01

    Faculty members rarely take advantage of family-friendly workplace policies. What are they so afraid of? Few eligible faculty members take formal leaves for childbearing or caregiving. The Faculty and Families Project at the author's university, for example, found that between 1992 and 1999, only four of 257 tenure-track faculty parents at…

  11. Supporting Family Caregivers.

    PubMed

    Ewing, Joshua

    2015-03-01

    (1) About 8,000 baby boomers reach age 65 every day. (2) Nearly 70 percent of people over age 65 will need some form of long-term services and supports in their lives. (3) AARP estimates the value of uncompensated care provided by family caregivers to be more than $450 billion annually. PMID:26173298

  12. Family Caregiver Alliance

    MedlinePlus

    ... of Family Caregiver Alliance. Blog What's New HOT Weather Tips We all suffer in hot weather. However, for elderly and disabled people and those ... conditions such as vascular disease or diabetes, the weather does not have to hit 100 degrees to ...

  13. Eldercare at Home: Caregiving

    MedlinePlus

    ... fill up all your time. This will then increase your stress and reduce your ability to give good care. Pay attention to positive ... If you do, caregiving can wear you out, increase your stress, and interfere with your ability to give good care at home. Support groups ...

  14. Together but apart: Caring for a spouse with dementia resident in a care facility.

    PubMed

    Hemingway, Dawn; MacCourt, Penny; Pierce, Joanna; Strudsholm, Tina

    2016-07-01

    This longitudinal, exploratory study was designed to better understand the lived experience of spousal caregivers age 60 and older providing care to partners with Alzheimer's disease and related dementias resident in a care facility. Twenty eight spousal caregivers were interviewed up to three times over a period of 2 years, and long-term care facility staff from four locations across British Columbia (BC), Canada participated in four focus groups. Thematic analysis of interview and focus group transcripts revealed a central, unifying theme 'together but apart'. The results identify key targets for policy makers and service providers to support positive health and well-being outcomes for spousal caregivers providing care to their partners diagnosed with Alzheimer's disease and related dementia and living in care facilities. PMID:25027632

  15. Lewy body dementias.

    PubMed

    Walker, Zuzana; Possin, Katherine L; Boeve, Bradley F; Aarsland, Dag

    2015-10-24

    The broad importance of dementia is undisputed, with Alzheimer's disease justifiably getting the most attention. However, dementia with Lewy bodies and Parkinson's disease dementia, now called Lewy body dementias, are the second most common type of degenerative dementia in patients older than 65 years. Despite this, Lewy body dementias receive little attention and patients are often misdiagnosed, leading to less than ideal management. Over the past 10 years, considerable effort has gone into improving diagnostic accuracy by refining diagnostic criteria and using imaging and other biomarkers. Dementia with Lewy bodies and Parkinson's disease dementia share the same pathophysiology, and effective treatments will depend not only on successful treatment of symptoms but also on targeting the pathological mechanisms of disease, ideally before symptoms and clinical signs develop. We summarise the most pertinent progress from the past 10 years, outlining some of the challenges for the future, which will require refinement of diagnosis and clarification of the pathogenesis, leading to disease-modifying treatments. PMID:26595642

  16. [Speech changes in dementia].

    PubMed

    Benke, T; Andree, B; Hittmair, M; Gerstenbrand, F

    1990-06-01

    This review analyzes the spectrum of language deficits commonly encountered in dementia. A specific communication profile is found in dementia of the "cortical" type, such as Alzheimer's disease. With advancing disease lexical, comprehension and pragmatic functions deteriorate, whereas syntax and phonology tend to be preserved. This pattern bears some resemblance to aphasia types like transcortical and Wernicke's aphasia, however, a much broader range of communicative functions is impaired in Alzheimer's disease than in aphasia. Differentiation of dementia and aphasia, especially in elderly patients requires careful neuropsychological assessment of language, memory and other psychological functions. "Subcortical" dementia commonly presents with dysarthria as the leading symptom and linguistic impairment is rarely of crucial importance until late stages. Thus, the interetiologic dissociation of language and speech impairment can be used for dementia differentiation. Aphasia batteries are not sufficient to comprehend the range of language deficits in demented patients. Testing the communication impairment in dementia requires specific tasks for spontaneous speech, naming, comprehension, reading, writing, repetition and motor speech functions. Tasks for verbal learning and metalinguistic abilities should also be performed. Language deficits are frequent initial symptoms of dementia, thus language assessment may be of diagnostic relevance. Many data support the concept that the communication deficit in dementia results from a particular impairment of semantic memory. PMID:1695887

  17. Dealing with Dementia

    MedlinePlus

    ... an NIH-supported Alzheimer’s disease center at the University of Wisconsin. “Symptoms of dementia can include problems with memory, thinking, and language, along with impairments to social skills and some behavioral symptoms.” Several factors can raise your risk for developing dementia. These ...

  18. Spiritual well-being and caregiver burden in Alzheimer's caregivers.

    PubMed

    Spurlock, Wanda Raby

    2005-01-01

    The purpose of this study was to examine the relationship between spiritual well-being and caregiver burden in family caregivers of persons with Alzheimer's disease. A descriptive, correlational research design was used, and a convenience sample of 150 caregivers was surveyed (71 African Americans, 77 Caucasians, and 2 other caregivers). Descriptive statistics were used to examine selected caregiver demographics. Statistical analysis included bivariate correlations using the Pearson product-moment coefficient correlation. The study's research question was as follows: What is the relationship between spiritual well-being and caregiver burden? It was hypothesized that there would be an inverse relationship between the 2 variables. A statistically significance inverse relationship (R = -.493, P < or = .01) was found to exist between the variables, thereby supporting the study's hypothesis. Additional findings revealed significant differences in African American and Caucasian caregiver's perception of spiritual well-being and caregiver burden. Caregivers also reported frequent use of spiritual behaviors or practices such as prayer. Findings implicate the need for further investigation and development of culturally relevant caregiver intervention strategies and programs that incorporate spirituality as a core component. PMID:15973342

  19. [Prevalence of overburden in caregivers of dependent elderly and associated factors in a poor area of Rio de Janeiro, Brazil].

    PubMed

    Lino, Valéria Teresa Saraiva; Rodrigues, Nadia Cristina Pinheiro; Camacho, Luiz Antônio Bastos; OʼDwyer, Gisele; Lima, Idenalva Silva de; Andrade, Mônica Kramer de Noronha; Atie, Soraya

    2016-06-20

    Population aging has led to increased dependency and overburden of family caregivers of dependent elderly. The aim was to verify prevalence of family caregivers overburden and associated factors in a poor and violent area of Rio de Janeiro, Brazil. This was a cross-sectional study of 140 elderly and family caregivers, focusing on social support, abuse, cohabitation, and family caregivers overburden, in addition to dependency, cognitive decline, and depression in the elderly. Multiple logistic models were constructed to explain family caregivers overburden. The following characteristics of the elderly were associated with family caregivers overburden: age (OR = 0.94; p < 0.002), depression (OR = 2.59; p < 0.005), and cognitive decline (OR = 3.19; p < 0.03). As for family caregivers characteristics, only social support remained relevant (OR = 2.35; p < 0.005). In conclusion, investigating and treating depression and dementia in the elderly and promoting support for their caregivers can contribute to the effective management of family caregivers overburden and improve quality of care for both. PMID:27333144

  20. Living With Semantic Dementia

    PubMed Central

    Sage, Karen; Wilkinson, Ray; Keady, John

    2014-01-01

    Semantic dementia is a variant of frontotemporal dementia and is a recently recognized diagnostic condition. There has been some research quantitatively examining care partner stress and burden in frontotemporal dementia. There are, however, few studies exploring the subjective experiences of family members caring for those with frontotemporal dementia. Increased knowledge of such experiences would allow service providers to tailor intervention, support, and information better. We used a case study design, with thematic narrative analysis applied to interview data, to describe the experiences of a wife and son caring for a husband/father with semantic dementia. Using this approach, we identified four themes: (a) living with routines, (b) policing and protecting, (c) making connections, and (d) being adaptive and flexible. Each of these themes were shared and extended, with the importance of routines in everyday life highlighted. The implications for policy, practice, and research are discussed. PMID:24532121

  1. Assessment of attachment behaviour to human caregivers in wolf pups (Canis lupus lupus).

    PubMed

    Hall, Nathaniel J; Lord, Kathryn; Arnold, Anne-Marie K; Wynne, Clive D L; Udell, Monique A R

    2015-01-01

    Previous research suggested that 16-week old dog pups, but not wolf pups, show attachment behaviour to a human caregiver. Attachment to a caregiver in dog pups has been demonstrated by differential responding to a caregiver compared to a stranger in the Ainsworth Strange Situation Test. We show here that 3-7 week old wolf pups also show attachment-like behaviour to a human caregiver as measured by preferential proximity seeking, preferential contact, and preferential greeting to a human caregiver over a human stranger in a modified and counterbalanced version of the Ainsworth Strange Situation Test. In addition, our results show that preferential responding to a caregiver over a stranger is only apparent following brief isolation. In initial episodes, wolf pups show no differentiation between the caregiver and the stranger; however, following a 2-min separation, the pups show proximity seeking, more contact, and more greeting to the caregiver than the stranger. These results suggest intensive human socialization of a wolf can lead to attachment--like responding to a human caregiver during the first two months of a wolf pup's life. PMID:25447510

  2. Predictors of Change in Caregiver Burden and Depressive Symptoms Following Nursing Home Admission

    PubMed Central

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

    2009-01-01

    Prior research has yielded discrepant findings regarding change in caregiver burden or depressive symptoms after institutionalization of persons with dementia. However, earlier studies often included small post-placement samples. In samples of 1,610 and 1,116 dementia caregivers with up to 6-months and 12-months post-placement data, respectively, this study identified predictors of change in caregiver burden and depressive symptoms following nursing home admission (NHA). Descriptive analyses found that caregivers reported significant and considerable decreases in burden in the 6- and 12-month post-placement panels. A number of variables predicted increased burden and depressive symptoms in the 6- and 12-month post-placement panels. Pre-placement measures of burden and depressive symptoms, site (Florida), overnight hospital use, and spousal relationship appear to result in impaired caregiver well-being following NHA. Incorporating more specific measures of stress, considering the influence of health-related transitions, and coordinating clinical strategies that balance caregivers’ needs for placement with sustainability of at-home care are important challenges for future research. PMID:19485656

  3. [Nighttime restlessness in people with dementia in residential care: an explorative field study].

    PubMed

    Van Vracem, M; Spruytte, N; Declercq, A; Van Audenhove, C

    2016-04-01

    Nighttime restlessness in dementia is an underestimated problem. Although little is known about the prevalence and not every person with dementia struggles with it, nighttime restlessness puts a heavy burden on the persons themselves and their caregivers.This field study explores nighttime restlessness in nursing homes based on two research questions: (1) What is nighttime restlessness according to professional caregivers? and (2) How is nighttime restlessness managed?Data were collected through diaries, interviews with caregivers and one night of observation in eight nursing homes.Wandering and screaming seem to be the most prevalent nighttime agitated behaviours. Caregivers identify many possible causes, but spatial and sensory factors, such as light or noise, were rarely mentioned spontaneously. The observations highlighted that a lot of light and noise is prominent and this might be causing nighttime restlessness.Caregivers try several strategies: for example talking with the resident, put on a light and apply medication or physical restraints.The management of nighttime restlessness requires a holistic approach. Caregivers' attention for and efforts to ameliorate the spatial and sensory environment in the management of nighttime restlessness are limited. PMID:26886877

  4. Depression, Dementia, and Social Supports.

    ERIC Educational Resources Information Center

    Esser, Sally R.; Vitaliano, Peter P.

    1988-01-01

    Reviews recent literature on the relationships among dementia, depression, and social support, emphasizing the diagnostic differentiation of dementia and depression, and the role of these three entities in elderly with cognitive impairment. Discusses dementia-like symptoms arising in depression and the coexistence of dementia and depression.…

  5. Auditory hedonic phenotypes in dementia: A behavioural and neuroanatomical analysis.

    PubMed

    Fletcher, Phillip D; Downey, Laura E; Golden, Hannah L; Clark, Camilla N; Slattery, Catherine F; Paterson, Ross W; Schott, Jonathan M; Rohrer, Jonathan D; Rossor, Martin N; Warren, Jason D

    2015-06-01

    Patients with dementia may exhibit abnormally altered liking for environmental sounds and music but such altered auditory hedonic responses have not been studied systematically. Here we addressed this issue in a cohort of 73 patients representing major canonical dementia syndromes (behavioural variant frontotemporal dementia (bvFTD), semantic dementia (SD), progressive nonfluent aphasia (PNFA) amnestic Alzheimer's disease (AD)) using a semi-structured caregiver behavioural questionnaire and voxel-based morphometry (VBM) of patients' brain MR images. Behavioural responses signalling abnormal aversion to environmental sounds, aversion to music or heightened pleasure in music ('musicophilia') occurred in around half of the cohort but showed clear syndromic and genetic segregation, occurring in most patients with bvFTD but infrequently in PNFA and more commonly in association with MAPT than C9orf72 mutations. Aversion to sounds was the exclusive auditory phenotype in AD whereas more complex phenotypes including musicophilia were common in bvFTD and SD. Auditory hedonic alterations correlated with grey matter loss in a common, distributed, right-lateralised network including antero-mesial temporal lobe, insula, anterior cingulate and nucleus accumbens. Our findings suggest that abnormalities of auditory hedonic processing are a significant issue in common dementias. Sounds may constitute a novel probe of brain mechanisms for emotional salience coding that are targeted by neurodegenerative disease. PMID:25929717

  6. Targeted case finding for dementia in primary care: Surrey Downs dementia diagnosis project

    PubMed Central

    Kallumpuram, Sen; Sudhir Kumar, CT; Khan, Bilal; Gavins, Victoria; Khan, Aalia; Iliffe, Steve

    2015-01-01

    Currently less than half of the estimated number of people with dementia in England receive a formal diagnosis of dementia or have contact with specialist dementia services. Case finding focused on high risk groups may be an effective way to identify the undiagnosed. This joint Surrey Downs Clinical Commissioning Group and Surrey and Borders NHS Foundation Trust quality improvement project aimed to increase the rate of dementia diagnosis across Surrey Downs using specialist link nurses (SLNs). Thirty three GP surgeries covering the entire Surrey Downs area took part in the project. Individuals at high risk of developing dementia were identified from GP electronic disease registers, and were offered screening at their GP practices by SLNs, using a combination of mini cognitive test (Mini-Cog) and functional assessment questionnaire (FAQ). Suitable individuals who screened positive were seen by their GP and where appropriate referred to secondary care services for further evaluation. Based on the presence of risk factors, 6657 (11.9%) people were identified from a total population of 55 845 over 65s, and 1980 (29.7%) completed the screening assessment. Three hundred and fifty eight (18.1%) individuals screened positive and were referred to their GP, who referred 205 (57.2%) of them to the memory services for further assessment. Of those referred, 164 (80%) had a comprehensive specialist assessment. Forty one (20%) declined further assessment, and their GPs were informed. The mean age of the cohort who completed the comprehensive assessment was 82.3 years (SD=4.26), and were predominantly white and male. Fifty four (32.9%) had mild cognitive disorder (MCD), and 101 (61.6%) patients were diagnosed with dementia. The most common dementia was mixed type (43; 42.6%), followed by Alzheimer's dementia (32; 31.7%). The most common risk factor among patients with cognitive impairment (MCD or dementia) was hypertension (69; 44.5 %), followed by ischemic heart disease (64, 41

  7. Does the informal caregiver notice HIV associated mild cognitive impairment in people living with HIV?

    PubMed

    Murray, Kenneth J; Cummins, Denise; Batterham, Marijka; Trotter, Garry; Healey, Loretta; O'Connor, Catherine C

    2016-01-01

    HIV associated minor neurocognitive disorder (MND) may be difficult to identify as key signs and symptoms (S & S) may be due to other clinical conditions. Using a self-assessment booklet "HIV and associated MND" we recruited 123 people living with HIV (PLHIV) from three sites: two hospital HIV clinics and a sexual health clinic in Sydney, Australia. Patients may down play S & S. Caregivers may notice subtle changes. By including caregivers, we aimed to find whether the caregivers noticed S & S undetected by the PLHIV. This is a sub-study of a prospective observational multi-site study aimed to validate the usefulness of a patient self-assessment tool (HIV-associated MND booklet). Using the booklet, participants and their caregivers subsequently identified S & S of MND. Sixty-four per cent (79) did not nominate a caregiver to be contacted. Participants from 2 sites 44 (36%) nominated caregivers to be contacted. Twenty-five caregivers identified more than four S & S of MND. S & S reported most by caregivers related to participants being more tired at the end of the day (76%). Participants agreed (77%). Participants also reported that they found it more difficult to remember things such as taking medications or attending medical appointments (67%). The most agreed on symptom was the requirement for increased concentration to get the same things done (Kappa P 0.599 <0.001 and McNemar 0.289). For each question at least one caregiver identified a symptom when the PLHIV did not. Caregivers were more likely than participants to report irritability and communication difficulties. It is important to include caregivers when investigating PLHIV for MND, as caregivers may validate the experience of the patient, and may also be uniquely placed to identify S & S not otherwise identified. PMID:26489931

  8. Dementia and amputation

    PubMed Central

    Schuch, Vera; Moysidis, Theodoros; Weiland, Dorothea; Santosa, Frans

    2012-01-01

    Objectives To our experience dementia seems to play an increasing role for major amputation in patients suffering from peripheral arterial disease (PAD). To confirm our impression, we analysed the rate of dementia associated with different surgical procedures using the information of the federal statistics in Germany. Patients and Methods Detailed lists of cases hospitalized with the principal diagnosis (PAD), abdominal aortic aneurysm (AAA), myocardial infarction (MI) and hip fracture (HF), and of the procedures minor or major amputation, endovascular aortic repair (EVAR), total endoprosthesis for hip replacement (THR) and coronary aortic bypass graft (CABG) in Germany in the years 2008 to 2010 were provided by the Federal Statistical Office. Results Dementia is documented as additional diagnosis in approximately one fourth of cases having the principal diagnosis HF, 5% to 6% of cases with the principal diagnosis MI and PAD, but only in approximately 2% of AAA cases. Dementia is documented as principal or additional diagnosis in one fourth of amputation procedures (major amputation approximately 18% and minor amputation approximately 8%), in approximately 5% THR, 2% of EVAR and only 0.3% of CABG. The rate of documentation of dementia is higher in patients treated by major amputation than in the hospitalized PAD population. Vice versa, the rate of documentation of dementia is lower in patients getting THR than in the hospitalized HF population. Conclusion The presented analysis supports the assumption that dementia plays a relevant role in older patients suffering from PAD receiving major amputation in Germany. PMID:24265873

  9. "I Do the Best I Can": Caregivers' Perceptions of Informal Caregiving for Older Adults in Belize

    ERIC Educational Resources Information Center

    Vroman, Kerryellen; Morency, Jamme

    2011-01-01

    In this first study of informal caregiving for older adults in Belize, 29 caregivers described their experiences of caregiving, how they perceived and managed the role, and what critical resources they needed. The three main themes identified in the caregiver interviews were "the experiences of caregivers, the rewards of caregiving, and navigating…

  10. Diagnosing dementia in Dutch general practice: a qualitative study of GPs’ practices and views

    PubMed Central

    Prins, Agnes; Hemke, Feia; Pols, Jeannette; van Charante, Eric P Moll

    2016-01-01

    Background GPs play an important role in recognising the symptoms of dementia; however, little is known about how they perceive their actual and future role in diagnosing dementia. Aim To explore Dutch GPs’ perceptions of their current position in diagnosing dementia, their reasons for referral to secondary care, and views on the future diagnostic role of GPs. Design and setting A qualitative study among Dutch GPs. Method Eighteen GPs participated in a semi-structured interview that ranged from 20 to 60 minutes. Interviews were transcribed verbatim and thematic analysis was performed. Results GPs reported that their role in the diagnostic phase of identifying people with suspected dementia is limited to recognising cognitive problems and deciding whether a patient needs to be referred for further investigation, or whether care could be organised without specialist diagnosis. GPs indicated that they were likely to refer patients if patients/caregivers or dementia case managers requested it, or if they thought it could have consequences for treatment. Typically, GPs do not see the need for referral when their patients are very old and declining slowly. GPs would welcome a more prominent role in diagnosing dementia in their own practice. Conclusion Diagnosing dementia involves a complex balance between patient and carer preferences, the consequences for treatment and care, and the burden of referral. Dutch GPs favour a stronger involvement in diagnosing dementia provided that both resources and diagnostic algorithms are improved. PMID:27114209

  11. Discomfort and agitation in older adults with dementia

    PubMed Central

    Pelletier, Isabelle Chantale; Landreville, Philippe

    2007-01-01

    Background A majority of patients with dementia present behavioral and psychological symptoms, such as agitation, which may increase their suffering, be difficult to manage by caregivers, and precipitate institutionalization. Although internal factors, such as discomfort, may be associated with agitation in patients with dementia, little research has examined this question. The goal of this study is to document the relationship between discomfort and agitation (including agitation subtypes) in older adults suffering from dementia. Methods This correlational study used a cross-sectional design. Registered nurses (RNs) provided data on forty-nine residents from three long-term facilities. Discomfort, agitation, level of disability in performing activities of daily living (ADL), and severity of dementia were measured by RNs who were well acquainted with the residents, using the Discomfort Scale for patients with Dementia of the Alzheimer Type, the Cohen-Mansfield Agitation Inventory, the ADL subscale of the Functional Autonomy Measurement System, and the Functional Assessment Staging, respectively. RNs were given two weeks to complete and return all scales (i.e., the Cohen-Mansfield Agitation Inventory was completed at the end of the two weeks and all other scales were answered during this period). Other descriptive variables were obtained from the residents' medical file or care plan. Results Hierarchical multiple regression analyses controlling for residents' characteristics (sex, severity of dementia, and disability) show that discomfort explains a significant share of the variance in overall agitation (28%, p < 0.001), non aggressive physical behavior (18%, p < 0.01) and verbally agitated behavior (30%, p < 0.001). No significant relationship is observed between discomfort and aggressive behavior but the power to detect this specific relationship was low. Conclusion Our findings provide further evidence of the association between discomfort and agitation in

  12. Treatment of Psychosis and Dementia in Parkinson’s Disease

    PubMed Central

    Goldman, Jennifer G.; Holden, Samantha

    2014-01-01

    Opinion Statement Parkinson’s disease (PD) has been increasingly recognized as having a multitude of non-motor symptoms including psychosis, cognitive impairment and dementia, mood disturbances, fatigue, apathy, and sleep disorders. Psychosis and dementia, in particular, greatly affect quality of life for both patients and caregivers and are associated with poor outcomes. Safe and effective treatment options for psychosis and dementia in PD are much needed. Antipsychotics with dopamine-blocking properties can worsen parkinsonian motor features and have been associated with increased morbidity and mortality in elderly, dementia patients. For treating PD psychosis, a first step would be eliminating confounding variables, such as delirium, infections or toxic-metabolic imbalances, followed by simplifying parkinsonian medications as tolerated. If additional treatment is warranted after such interventions, clozapine or quetiapine can be implemented at the low dose levels typically needed by PD patients. Although quetiapine is easy-to-use in clinical settings, does not require blood count monitoring like clozapine, and is anecdotally beneficial, it remains “investigational” in evidence-based medicine reviews. Though not currently available, the novel 5-HT2a inverse agonist, pimavanserin has shown promise in the treatment of PD psychosis. Current treatments for PD dementia are mostly derived from those utilized in Alzheimer’s disease, focusing mainly on cholinesterase inhibitors and memantine, a NMDA receptor antagonist. Rivastigmine, the only approved medication for PD dementia, is a reasonable first choice. Other cholinesterase inhibitors and memantine have not yet achieved recommendation status in evidence-based medicine reviews but are well tolerated in studies of PD dementia patients. At present, there are no approved treatments for mild cognitive impairment in PD, but rasagiline, a selective MAO-B inhibitor, and atomoxetine, a serotonin norepinephrine

  13. Dementia with lewy bodies.

    PubMed

    Posner, H; Chin, S; Marder, K

    2001-10-17

    In this case study, we describe the symptoms, neuropsychological testing, and brain pathology of a man with dementia with Lewy bodies. Dementia with Lewy bodies might be the second most common form of degenerative dementia in the elderly. Progressive cognitive decline, well-formed visual hallucinations, and parkinsonism are core features of this disease. This case was marked by preserved verbal expression despite impairment in memory, visuospatial skills, and attention span. Development of visual symptoms and parkinsonism occurred very early in the course of the disease. PMID:14602963

  14. Caregiver’s Perceptions of the Relationship of Pain to Behavioral and Psychiatric Symptoms In Older Community Residing Adults with Dementia

    PubMed Central

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

    2014-01-01

    Objectives Pain is under recognized and under managed in older adults with dementia. Because dementia patients have a diminished capacity to communicate discomfort, untreated pain may be expressed in the form of behavioral and psychiatric symptoms. The goal of the present study was to examine the relationship between pain and behavioral and psychiatric symptoms of dementia in community residing older adults from the perspective of the family caregiver. Methods Dyads composed of 272 dementia patients and their family caregivers were assessed to determine dementia patient’s mental status, and family caregiver’s assessment of care recipient’s pain, functional dependence and number of behavioral symptoms, analgesic use and demographic information. Results Hierarchical multiple regression analysis controlling for age, marital status, race, functional disability, and analgesic use showed that pain explained a small but significant percent of variance in the number of behavioral symptoms (3%, p<.001). Pain had a stronger influence on the number of BPDS among those with severe cognitive impairment (F [1, 69] = 11.75, p < .001) compared to those with low to moderate cognitive impairment (F [1,199] = 4.543, p=.034.). Discussion The findings indicate that pain is a risk factor for behavioral symptoms in individuals with dementia and suggest that pain is a more significant predictor of behavior for individuals with severe dementia, compared to those with mild/moderate stage dementia. These results reinforce the importance of proper pain assessment and its management as part of dementia care planning. PMID:24281271

  15. REMCARE: Pragmatic Multi-Centre Randomised Trial of Reminiscence Groups for People with Dementia and their Family Carers: Effectiveness and Economic Analysis

    PubMed Central

    Orrell, Martin; Bruce, Errollyn; Edwards, Rhiannon T.; Hounsome, Barry; Keady, John; Orgeta, Vasiliki; Rees, Janice

    2016-01-01

    Background Joint reminiscence groups, involving people with dementia and family carers together, are popular, but the evidence-base is limited. This study aimed to assess the effectiveness and cost-effectiveness of joint reminiscence groups as compared to usual care. Methods This multi-centre, pragmatic randomised controlled trial had two parallel arms: intervention group and usual-care control group. A restricted dynamic method of randomisation was used, with an overall allocation ratio of 1:1, restricted to ensure viable sized intervention groups. Assessments, blind to treatment allocation, were carried out at baseline, three months and ten months (primary end-point), usually in the person's home. Participants were recruited in eight centres, mainly through NHS Memory Clinics and NHS community mental health teams. Included participants were community resident people with mild to moderate dementia (DSM-IV), who had a relative or other care-giver in regular contact, to act as informant and willing and able to participate in intervention. 71% carers were spouses. 488 people with dementia (mean age 77.5)were randomised: 268 intervention, 220 control; 350 dyads completed the study (206 intervention, 144 control). The intervention evaluated was joint reminiscence groups (with up to 12 dyads) weekly for twelve weeks; monthly maintenance sessions for further seven months. Sessions followed a published treatment manual and were held in a variety of community settings. Two trained facilitators in each centre were supported by volunteers. Primary outcome measures were self-reported quality of life for the person with dementia (QoL-AD), psychological distress for the carer (General Health Questionnaire, GHQ-28). Secondary outcome measures included: autobiographical memory and activities of daily living for the person with dementia; carer stress for the carer; mood, relationship quality and service use and costs for both. Results The intention to treat analysis (ANCOVA

  16. Palliative Care for Patients with Dementia: A National Survey

    PubMed Central

    Torke, Alexia M.; Holtz, Laura R.; Hui, Siu; Castelluccio, Peter; Connor, Stephen; Eaton, Matthew A.; Sachs, Greg A.

    2011-01-01

    OBJECTIVES To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC. DESIGN Telephone and Web-based surveys. SETTING U.S. hospice and PC programs from the National Hospice and Palliative Care Organization’s program list. PARTICIPANTS Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC. MEASUREMENTS A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC. RESULTS Ninety-four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end-of-life care. CONCLUSION Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible. PMID:21054292

  17. Predictors of Inpatient Utilization among Veterans with Dementia

    PubMed Central

    Godwin, Kyler M.; Morgan, Robert O.; Walder, Annette; Bass, David M.; Judge, Katherine S.; Wilson, Nancy; Snow, A. Lynn; Kunik, Mark E.

    2014-01-01

    Dementia is prevalent and costly, yet the predictors of inpatient hospitalization are not well understood. Logistic and negative binomial regressions were used to identify predictors of inpatient hospital utilization and the frequency of inpatient hospital utilization, respectively, among veterans. Variables significant at the P < 0.15 level were subsequently analyzed in a multivariate regression. This study of veterans with a diagnosis of dementia (n = 296) and their caregivers found marital status to predict hospitalization in the multivariate logistic model (B = 0.493, P = 0.029) and personal-care dependency to predict hospitalization and readmission in the multivariate logistic model and the multivariate negative binomial model (B = 1.048, P = 0.007, B = 0.040, and P = 0.035, resp.). Persons with dementia with personal-care dependency and spousal caregivers have more inpatient admissions; appropriate care environments should receive special care to reduce hospitalization. This study was part of a larger clinical trial; this trial is registered with ClinicalTrials.gov NCT00291161. PMID:24982674

  18. Predictors of Inpatient Utilization among Veterans with Dementia.

    PubMed

    Godwin, Kyler M; Morgan, Robert O; Walder, Annette; Bass, David M; Judge, Katherine S; Wilson, Nancy; Snow, A Lynn; Kunik, Mark E

    2014-01-01

    Dementia is prevalent and costly, yet the predictors of inpatient hospitalization are not well understood. Logistic and negative binomial regressions were used to identify predictors of inpatient hospital utilization and the frequency of inpatient hospital utilization, respectively, among veterans. Variables significant at the P < 0.15 level were subsequently analyzed in a multivariate regression. This study of veterans with a diagnosis of dementia (n = 296) and their caregivers found marital status to predict hospitalization in the multivariate logistic model (B = 0.493, P = 0.029) and personal-care dependency to predict hospitalization and readmission in the multivariate logistic model and the multivariate negative binomial model (B = 1.048, P = 0.007, B = 0.040, and P = 0.035, resp.). Persons with dementia with personal-care dependency and spousal caregivers have more inpatient admissions; appropriate care environments should receive special care to reduce hospitalization. This study was part of a larger clinical trial; this trial is registered with ClinicalTrials.gov NCT00291161. PMID:24982674

  19. Long-Distance Caregiving -- A Family Affair

    MedlinePlus

    ... to the aging family member. Talk about caregiving responsibilities First, try to define the caregiving responsibilities. You ... suited to your skills or interests. Splitting caregiving responsibilities—consider your strengths When thinking about who should ...

  20. Dementia and driving

    MedlinePlus

    ... not drive at times of the day when traffic is heaviest. Do not drive when the weather is bad. Do not drive long distances. Drive only on roads the person is used to. Caregivers should try to lessen ...

  1. El Portal Latino Alzheimer's Project: model program for Latino caregivers of Alzheimer's disease-affected people.

    PubMed

    Aranda, Maria P; Villa, Valentine M; Trejo, Laura; Ramírez, Rosa; Ranney, Martha

    2003-04-01

    The article describes the El Portal Latino Alzheimer's Project--a dementia-specific outreach and services program targeting Latino caregivers in the Los Angeles County area. The project is an example of an interorganizational community-based collaborative developed to provide an array of coordinated, ethnic-sensitive services to Latino dementia-affected adults and their family caregivers, using culturally specific outreach and services delivery strategies. Results of an evaluation of service utilization indicate a reduction in barriers to care and an increase in services utilization. Los Angeles County provides a natural urban laboratory to study the special needs and circumstances of older Latinos dealing with chronic and debilitating illnesses. Implications for social work practice are discussed. PMID:12718421

  2. [Is frontotemporal dementia a disease of identity?].

    PubMed

    Lebert, Florence

    2009-06-01

    Patients with frontotemporal dementia (FTD) have major behavioral troubles and a loss of insight. These factors contribute to reduce self-awareness and recognition of identify of others and by others. Autobiographical amnesia, loss of insight and executive dysfunctions are the major reasons of vulnerable "self" in FTD. Mind representation deficits, decrease of perception of emotions and semantic amnesia contribute to reduced recognition of the relative's identity. Alterations of body expressions, social disinhibition, changes in social and religious values decrease the recognition of patient's identity by the relatives. Different psychological components of identity are modified by the FTD such as feeling of unity, of consistency, of temporality and of affiliation. The fact that brain lesions of FTD are focalized can contribute to understand the biological knowledge of "identity". To know the neurological substrate of alterations of identity, this can help to improve the empathy of the suffering caregivers for the patient. PMID:19473950

  3. Collaborative transdisciplinary team approach for dementia care

    PubMed Central

    Galvin, James E; Valois, Licet; Zweig, Yael

    2015-01-01

    SUMMARY Alzheimer's disease (AD) has high economic impact and places significant burden on patients, caregivers, providers and healthcare delivery systems, fostering the need for an evaluation of alternative approaches to healthcare delivery for dementia. Collaborative care models are team-based, multicomponent interventions that provide a pragmatic strategy to deliver integrated healthcare to patients and families across a wide range of populations and clinical settings. Healthcare reform and national plans for AD goals to integrate quality care, health promotion and preventive services, and reduce the impact of disease on patients and families reinforcing the need for a system-level evaluation of how to best meet the needs of patients and families. We review collaborative care models for AD and offer evidence for improved patient- and family-centered outcomes, quality indicators of care and potential cost savings. PMID:25531688

  4. Burden of Dementia

    MedlinePlus

    ... Us FAQs Stay Connected You are here Home Global Health and Aging The Burden of Dementia The ... this total in less developed countries ( Figure 9 ). Global efforts are underway to understand and find cures ...

  5. Young-Onset Dementia

    PubMed Central

    Kuruppu, Dulanji K; Matthews, Brandy R

    2014-01-01

    Young-onset dementia (YOD) is an neurological syndrome that affects behavior and cognition of patients younger than 65 years of age. Although frequently misdiagnosed, a systematic approach, reliant upon attainment of detailed medical history, collateral history from an informant, neuropsychological testing, laboratory studies, and neuroimaging, may facilitate earlier and more accurate diagnosis with subsequent intervention. The differential diagnosis of YOD is extensive and includes early-onset forms of adult neurodegenerative conditions including Alzheimer's disease, vascular dementia, frontotemporal dementia, Lewy body dementias, Huntington's disease, and prion disease. Late-onset forms of childhood neurodegenerative conditions may also present as YOD and include mitochondrial disorders, lysosomal storage disorders, and leukodystrophies. Potentially reversible etiologies including inflammatory disorders, infectious diseases, toxic/metabolic abnormalities, transient epileptic amnesia, obstructive sleep apnea, and normal pressure hydrocephalus also represent important differential diagnostic considerations in YOD. This review will present etiologies, diagnostic strategies, and options for management of YOD with comprehensive summary tables for clinical reference. PMID:24234358

  6. Dementia - home care

    MedlinePlus

    ... help improve communication skills and prevent wandering. Calming music may reduce wandering and restlessness, ease anxiety, and ... prevent falls Ways to improve bathroom safety The Alzheimer's Association's Safe Return Program requires people with dementia ...

  7. Preventing and diagnosing dementia.

    PubMed

    Keenan, Bernie; Jenkins, Catharine; Ginesi, Laura

    While dementia is an umbrella term for a range of degenerative brain disorders, many share similar presentations. Nurses are ideally placed to identify those at risk and empower them to access treatment and plan and prepare for their future needs--as such, they need up-to-date knowledge of the signs and symptoms of the different types of dementia to identify risk factors and make an informed diagnosis. This article, the third in a four-part series on dementia, examines the risk factors, signs, symptoms and diagnosis of dementia, as well as outlining lifestyle factors such as diet and exercise that may help to prevent the development of the condition. PMID:27544960

  8. Addressing the ethical, legal, and social issues raised by voting by persons with dementia.

    PubMed

    Karlawish, Jason H; Bonnie, Richard J; Appelbaum, Paul S; Lyketsos, Constantine; James, Bryan; Knopman, David; Patusky, Christopher; Kane, Rosalie A; Karlan, Pamela S

    2004-09-15

    This article addresses an emerging policy problem in the United States participation in the electoral process by citizens with dementia. At present, health care professionals, family caregivers, and long-term care staff lack adequate guidance to decide whether individuals with dementia should be precluded from or assisted in casting a ballot. Voting by persons with dementia raises a series of important questions about the autonomy of individuals with dementia, the integrity of the electoral process, and the prevention of fraud. Three subsidiary issues warrant special attention: development of a method to assess capacity to vote; identification of appropriate kinds of assistance to enable persons with cognitive impairment to vote; and formulation of uniform and workable policies for voting in long-term care settings. In some instances, extrapolation from existing policies and research permits reasonable recommendations to guide policy and practice. However, in other instances, additional research is necessary. PMID:15367557

  9. Caring for the Caregivers: Patterns of Organizational Caregiving.

    ERIC Educational Resources Information Center

    Kahn, William A.

    1993-01-01

    Offers a system-level perspective on job burnout among human service workers, focusing on their internal networks of caregiving relationships. Defines and illustrates five recurring caregiving patterns characterizing agency members' relationships, ranging from supervisor support to mutual withdrawal between supervisors and subordinates. Discusses…

  10. Young onset dementia

    PubMed Central

    Sampson, E; Warren, J; Rossor, M

    2004-01-01

    Young onset dementia is a challenging clinical problem with potentially devastating medical and social consequences. The differential diagnosis is wide, and includes a number of rare sporadic and hereditary diseases. However, accurate diagnosis is often possible, and all patients should be thoroughly investigated to identify treatable processes. This review presents an approach to the diagnosis, investigation, and management of patients with young onset dementia, with particular reference to common and treatable causes. PMID:15016933

  11. Neuroimaging and dementia

    SciTech Connect

    Benson, D.F.

    1986-05-01

    The tremendous increase in dementia has created a need for improved diagnostic techniques, and each of the newly established brain imaging techniques has been applied to this problem. Several, particularly computerized tomography (CT), magnetic resonance imaging (MRI), and isotope emission tomography, have proved valuable. Each procedure has strengths--specific disorders that can be diagnosed--and weaknesses--types of dementia that cannot be demonstrated.

  12. Caring for Alzheimer's Patients. Supplement to Caregivers' Practical Help to Assist Those Who Care for Patients with Dementia Related Diseases = El Cuidado de los Pacientes de Alzheimer. Suplemento de Ayuda Practica para las Personas Encargadas para Ayudar a los que Cuidan a Pacientes que Sufren de Enfermedades Relacionadas con la Demencia.

    ERIC Educational Resources Information Center

    New York State Office for the Aging, Albany.

    This manual is intended for caregivers of homebound patients with Alzheimer's disease and others who are mentally impaired. It deals with the nature of Alzheimer's, the decline in a patient's abilities, information about available services, and legal and financial issues. The manual provides guidance and suggestions to lessen the daily stress…

  13. Cooperative dementia care clinics: A new model for managing cognitively impaired patients.

    PubMed

    Lessig, Mary; Farrell, Jeanette; Madhavan, Ernest; Famy, Christopher; Vath, Brian; Holder, Teresa; Borson, Soo

    2006-12-01

    Cooperative health care clinics (CHCCs), or shared medical appointments, are a healthcare innovation that can improve access and expand physicians' capacity to manage common geriatric conditions. This report describes a pilot program and working model for extending CHCCs to patients with dementia. Three cooperative dementia care clinics (CDCCs) met monthly for up to 1 year, drawing participants from a dementia clinic roster of patients and caregivers who had required continued specialty care for at least 3 months. Twenty-six of 33 eligible patient-caregiver dyads expressed interest, and 21 enrolled; five whose clinical status changed during the year withdrew and were replaced with new members. Brief introductory socialization, individualized clinical management, and an educational focus selected from problems of patients and caregivers were common to all sessions. Most participants required several types of clinical intervention and educational support. One group ended after reaching a natural termination point, and two others are ongoing at the request of participants. CDCCs can be a viable approach to increasing dementia care capacity in health systems. Formal service intervention trials to evaluate the generalizability and comparative effectiveness and economic viability of this model versus usual care are an appropriate next step. PMID:17198502

  14. Availability and Primary Health Care Orientation of Dementia-Related Services in Rural Saskatchewan, Canada

    PubMed Central

    Morgan, Debra G.; Kosteniuk, Julie G.; Stewart, Norma J.; O’Connell, Megan E.; Kirk, Andrew; Crossley, Margaret; Dal Bello-Haas, Vanina; Forbes, Dorothy; Innes, Anthea

    2015-01-01

    Community-based services are important for improving outcomes for individuals with dementia and their caregivers. This study examined: (a) availability of rural dementia-related services in the Canadian province of Saskatchewan, and (b) orientation of services toward six key attributes of primary health care (i.e., information/education, accessibility, population orientation, coordinated care, comprehensiveness, quality of care). Data were collected from 71 rural Home Care Assessors via cross-sectional survey. Basic health services were available in most communities (e.g., pharmacists, family physicians, palliative care, adult day programs, home care, long-term care facilities). Dementia-specific services typically were unavailable (e.g., health promotion, counseling, caregiver support groups, transportation, week-end/night respite). Mean scores on the primary health care orientation scales were low (range 12.4 to 17.5/25). Specific services to address needs of rural individuals with dementia and their caregivers are limited in availability and fit with primary health care attributes. PMID:26496646

  15. Autophagy in dementias.

    PubMed

    Kragh, Christine Lund; Ubhi, Kiren; Wyss-Coray, Tony; Wyss-Corey, Tony; Masliah, Eliezer

    2012-01-01

    Dementias are a varied group of disorders typically associated with memory loss, impaired judgment and/or language and by symptoms affecting other cognitive and social abilities to a degree that interferes with daily functioning. Alzheimer's disease (AD) is the most common cause of a progressive dementia, followed by dementia with Lewy bodies (DLB), frontotemporal dementia (FTD), (VaD) and HIV-associated neurocognitive disorders (HAND). The pathogenesis of this group of disorders has been linked to the abnormal accumulation of proteins in the brains of affected individuals, which in turn has been related to deficits in protein clearance. Autophagy is a key cellular protein clearance pathway with proteolytic cleavage and degradation via the ubiquitin-proteasome pathway representing another important clearance mechanism. Alterations in the levels of autophagy and the proteins associated with the autophagocytic pathway have been reported in various types of dementias. This review will examine recent literature across these disorders and highlight a common theme of altered autophagy across the spectrum of the dementias. PMID:22150925

  16. Early Dementia Screening.

    PubMed

    Panegyres, Peter K; Berry, Renee; Burchell, Jennifer

    2016-01-01

    As the population of the world increases, there will be larger numbers of people with dementia and an emerging need for prompt diagnosis and treatment. Early dementia screening is the process by which a patient who might be in the prodromal phases of a dementing illness is determined as having, or not having, the hallmarks of a neurodegenerative condition. The concepts of mild cognitive impairment, or mild neurocognitive disorder, are useful in analyzing the patient in the prodromal phase of a dementing disease; however, the transformation to dementia may be as low as 10% per annum. The search for early dementia requires a comprehensive clinical evaluation, cognitive assessment, determination of functional status, corroborative history and imaging (including MRI, FDG-PET and maybe amyloid PET), cerebrospinal fluid (CSF) examination assaying Aβ1-42, T-τ and P-τ might also be helpful. Primary care physicians are fundamental in the screening process and are vital in initiating specialist investigation and treatment. Early dementia screening is especially important in an age where there is a search for disease modifying therapies, where there is mounting evidence that treatment, if given early, might influence the natural history-hence the need for cost-effective screening measures for early dementia. PMID:26838803

  17. [Post Stroke Dementia].

    PubMed

    Ihara, Masafumi

    2016-07-01

    Post-stroke dementia (PSD) is a clinical entity that encompasses all types of dementia following an index stroke. Current evidence suggests that 25-30% of ischemic stroke survivors develop immediate or delayed vascular cognitive impairment or vascular dementia. The type of stroke can be either ischemic, hemorrhagic or hypoperfusive. There are multiple risk factors for PSD including older age, family history, genetic variants, low educational status, vascular comorbidities, prior transient ischemic attack or recurrent stroke and depressive illness. Pre-stroke dementia refers to the occurrence of cognitive impairment before the index stroke, which may be caused by a vascular burden as well as insidious neurodegenerative changes. Neuroimaging determinants of dementia after stroke include silent brain infarcts, white matter changes, lacunar infarcts and medial temporal lobe atrophy. Published clinical trials have not been promising and there is little information on whether PSD can be prevented using pharmacological agents. Control of vascular disease risk and prevention of recurrent strokes are key to reducing the burden of cognitive decline and post-stroke dementia. Modern imaging and analysis techniques will help to elucidate the mechanism of PSD and establish better treatment. PMID:27395459

  18. Early Dementia Screening

    PubMed Central

    Panegyres, Peter K.; Berry, Renee; Burchell, Jennifer

    2016-01-01

    As the population of the world increases, there will be larger numbers of people with dementia and an emerging need for prompt diagnosis and treatment. Early dementia screening is the process by which a patient who might be in the prodromal phases of a dementing illness is determined as having, or not having, the hallmarks of a neurodegenerative condition. The concepts of mild cognitive impairment, or mild neurocognitive disorder, are useful in analyzing the patient in the prodromal phase of a dementing disease; however, the transformation to dementia may be as low as 10% per annum. The search for early dementia requires a comprehensive clinical evaluation, cognitive assessment, determination of functional status, corroborative history and imaging (including MRI, FDG-PET and maybe amyloid PET), cerebrospinal fluid (CSF) examination assaying Aβ1–42, T-τ and P-τ might also be helpful. Primary care physicians are fundamental in the screening process and are vital in initiating specialist investigation and treatment. Early dementia screening is especially important in an age where there is a search for disease modifying therapies, where there is mounting evidence that treatment, if given early, might influence the natural history—hence the need for cost-effective screening measures for early dementia. PMID:26838803

  19. Young onset dementia.

    PubMed

    Draper, B; Withall, A

    2016-07-01

    Young onset dementia (YOD), where symptoms of dementia have an onset before the age of 65, has become more prominent due to the population increase from the Baby Boomer generation. This clinical perspective examines key issues in the assessment, diagnosis and management of YOD. Challenges in the assessment and diagnosis of YOD are partly due to the diverse range of types of YOD, where degenerative dementias are less common and secondary dementias more common than in late onset dementia. Early symptoms are broad and include depression, behavioural change, neurological disorders, systemic disorders and mild cognitive impairment (MCI). Perceived diagnostic delay may result in frustration and distress in people with YOD and their families. Chronic depression and MCI are associated with longer time to diagnosis, and in these situations, clinicians need to establish appropriate review processes and communicate clearly. A diagnosis of YOD may have marked consequences for a younger person, including early retirement, financial impacts and the psychological challenge of coming to grips with cognitive decline. Partners, children and other supporters often have unmet needs, feel burdened by care and are at high risk of physical and emotional consequences. Concerns about the heritability of dementia may add to family distress. Recent community service developments in Australia for YOD are outlined and the challenges of residential care described. PMID:27405890

  20. Information and Resources for Caregivers: Sickle Cell Disease

    MedlinePlus

    ... Decisions Find Help Caregiver Stress NYC Services National Resources Specific Illness E- Newsletter What's New Beth Israel ... Advance Directives Frequently Asked Questions Caregiver Guides Caregiver Resource Directory Asian Family Caregiver Handbook Asian Family Caregiver ...

  1. ACNP White Paper: Update on Use of Antipsychotic Drugs in Elderly Persons with Dementia

    PubMed Central

    Jeste, Dilip V.; Blazer, Dan; Casey, Daniel; Meeks, Thomas; Salzman, Carl; Schneider, Lon; Tariot, Pierre; Yaffe, Kristine

    2008-01-01

    In elderly persons, antipsychotic drugs are clinically prescribed off-label for a number of disorders outside of their Food and Drug Administration (FDA)-approved indications (schizophrenia and bipolar disorder). The largest number of antipsychotic prescriptions in older adults is for behavioral disturbances associated with dementia. In April 2005, the FDA, based on a meta-analysis of 17 double-blind randomized placebo-controlled trials among elderly people with dementia, determined that atypical antipsychotics were associated with a significantly (1.6−1.7 times) greater mortality risk compared with placebo, and asked that drug manufacturers add a ‘black box’ warning to prescribing information for these drugs. Most deaths were due to either cardiac or infectious causes, the two most common immediate causes of death in dementia in general. Clinicians, patients, and caregivers are left with unclear choices of treatment for dementia patients with psychosis and/or severe agitation. Not only are psychosis and agitation common in persons with dementia but they also frequently cause considerable caregiver distress and hasten institutionalization of patients. At the same time, there is a paucity of evidence-based treatment alternatives to antipsychotics for this population. Thus, there is insufficient evidence to suggest that psychotropics other than antipsychotics represent an overall effective and safe, let alone better, treatment choice for psychosis or agitation in dementia; currently no such treatment has been approved by the FDA for these symptoms. Similarly, the data on the efficacy of specific psychosocial treatments in patients with dementia are limited and inconclusive. The goal of this White Paper is to review relevant issues and make clinical and research recommendations regarding the treatment of elderly dementia patients with psychosis and/or agitation. The role of shared decision making and caution in using pharmacotherapy for these patients is

  2. Patients' and Caregivers' Attributes in a Meaningful Care Encounter: Similarities and Notable Differences

    PubMed Central

    Snellman, Ingrid; Gustafsson, Christine; Gustafsson, Lena-Karin

    2012-01-01

    In today's healthcare system, there is an imbalance between what patients expect of caregivers' care and their perception of the care they get. How is it possible to reduce this imbalance? The aim of this paper was to describe attributes associated with meaningful encounters in the Swedish healthcare system based on patients' and caregivers' written narratives and to note the differences and similarities between the attributes identified by the two groups. This paper is a qualitative descriptive study. The analysis was guided by qualitative content analyses. Based on patients' narratives, attributes associated with a meaningful encounter fell into four categories: the kind-hearted caregiver, the thoughtful caregiver, the mutually oriented caregiver, and the helpful caregiver. Based on caregivers' narratives, the attributes were categorized as being humane, caring through physical contact, caring by nurturing communication, joy and laughter in care, and a sense of mutuality. The results show that there are both similarities and differences in patients' and caregivers' opinions about the attributes of a meaningful encounter. Knowing more about the attributes associated with meaningful encounters makes it possible for caregivers to individualize care for patients and makes it easier to help and support patients in what they most need support with. PMID:22701802

  3. Emotional Availability: Foster Caregiving Experience

    ERIC Educational Resources Information Center

    Nelson, Dean R.

    2012-01-01

    The purpose of the study was to investigate if the emotional availability of caregivers is explanatory for successful adolescent foster care placement--from initial placement of an adolescent to age eighteen or emancipation from foster care, as mandated by the state of Colorado. Emotional availability of foster caregivers and the phenomenon's…

  4. Caregivers--Who Copes How?

    ERIC Educational Resources Information Center

    Chappell, Neena L.; Dujela, Carren

    2009-01-01

    Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies…

  5. Childhood Obesity: The Caregiver's Role.

    ERIC Educational Resources Information Center

    Haschke, Bernadette

    2003-01-01

    Describes the role caregivers play in helping young children dealing with obesity. Examines: (1) causes of childhood obesity; (2) caregiver's position; (3) learning nutrition concepts; (4) preparing and serving healthy foods; (5) encouraging physical activity; (6) working with parents; and (7) assisting an obese child. (SD)

  6. Translation of Two Evidence-Based Programs for Training Families to Improve Care of Persons with Dementia

    ERIC Educational Resources Information Center

    Teri, Linda; McKenzie, Glenise; Logsdon, Rebecca G.; McCurry, Susan M.; Bollin, Salli; Mead, Jennifer; Menne, Heather

    2012-01-01

    The need for evidence-based non-pharmacological community programs to improve care of older adults with dementia is self-evident, considering the sheer numbers of affected individuals; the emotional, physical, and financial toll on affected individuals and their caregivers; the impact on our health care system; and the growing availability of…

  7. Theoretical Perspectives Concerning Positive Aspects of Caring for Elderly Persons with Dementia: Stress/Adaptation and Existentialism.

    ERIC Educational Resources Information Center

    Farran, Carol J.

    1997-01-01

    Uses an existentialist perspective to examine the current empirical stress/adaptation model that guides caregiving of persons with dementia. Compares and contrasts key elements, strengths, and limitations of each model and isolates areas of convergence/divergence in both perspectives. Identifies implications for future theory development,…

  8. Caregiving and risk of mortality and functional decline in white and black elderly adults: findings from the Health ABC study

    PubMed Central

    Fredman, Lisa; Cauley, Jane A.; Satterfield, Suzanne; Simonsick, Eleanor; Spencer, S. Melinda; Ayonayon, Hilsa N.; Harris, Tamara B.

    2012-01-01

    Context Although caregivers report more stress than non-caregivers, few studies have found greater health decline in older caregivers. We hypothesized that caregivers may be more physically active than non-caregivers, which may protect them from health decline. Objective To evaluate total, and race- and gender-specific risk of mortality and functional decline in elderly caregivers versus non-caregivers, and whether these associations were mediated by total physical activity (including daily routine, leisure-time exercise, and caregiving activity). Design and setting The Health, Aging and Body Composition (Health ABC) study, a cohort study of 3075 healthy adults, aged 70–79 years in 1997–1998 who resided in Memphis, Tennessee or Pittsburgh, Pennsylvania and were followed through their eighth year of participation. Participants Participants were classified as caregivers (n=680, 22%) or non-caregivers (n=2369) if they reported providing “regular care or assistance for a child or a disabled or sick adult”. Main Outcome Measure All-cause mortality and incident mobility limitation, defined as reported difficulty walking ¼ mile or climbing 10 steps on two consecutive semi-annual contacts. Results Overall, 20.6% of caregivers died and 50.9% developed mobility limitation, versus 22.0% and 48.9% of non-caregivers, respectively. Associations with health outcomes differed by race and gender. Mortality and mobility limitation rates were 1.5 times higher in white caregivers compared to non-caregivers (e.g., among white females, adjusted hazards ratio for mortality, HR = 1.6, 1.0–2.5), but were lower in black female caregivers versus non-caregivers (e.g., HR for mortality = 0.9, 0.5–1.4). Physical activity mediated these associations in most race-gender groups. High-intensity caregivers (i.e., spending ≥ 24 hours/week caregiving) had elevated rates of decline when adjusted for physical activity, but lower rates when not adjusted for it. Conclusion Older white

  9. Telehealth home monitoring of solitary persons with mild dementia.

    PubMed

    Smith, Glenn E; Lunde, Angela M; Hathaway, Julie C; Vickers, Kristin S

    2007-01-01

    Medication safety is a special concern for the 30% to 40% of dementia patients who live alone at the time of diagnosis, and it plays an important part in relocation decisions. Televideo monitoring could improve medication self-administration accuracy and improve mood for persons with mild dementia who live alone or spend a significant amount of their day alone. The authors used 2-way interactive video technology to monitor medication compliance of 8 persons with mild dementia. They conducted more than 4000 contacts with these persons and found adequate technical outcome in 82% of calls. End medication compliance was 81% in the video-monitored group compared to 66% in the controls (P < .05). Comparison of compliance from initial to end ratings revealed that video-monitored participants' compliance remained stable while unmonitored patients' compliance fell 12 percentage points, consistent with expectations for dementia. This difference was also significant. Quantitative and qualitative outcome data from this project are presented. PMID:17533998

  10. Abuse of people with cognitive impairment by family caregivers in Japan (a cross-sectional study).

    PubMed

    Kishimoto, Yuki; Terada, Seishi; Takeda, Naoya; Oshima, Etsuko; Honda, Hajime; Yoshida, Hidenori; Yokota, Osamu; Uchitomi, Yosuke

    2013-10-30

    Caregiving is often stressful in an aging society. Our research questions were two. First, In Japan, how often does abusive behavior by the caregivers of elders with clinically mild cognitive dysfunction (mild cognitive impairment and clinically mild dementia) occur? Second, what risk factors affect the abusive behavior? We studied 123 Japanese caregivers and care recipients who had been referred to the Memory Clinic at Okayama University Hospital. We used the Japanese version of the modified Conflict Tactics Scale (m-CTS) to measure abusive behaviors. We estimate the prevalence of abusive behavior meeting threshold (m-CTS score of 2 or higher) for abuse case on the modified m-CTS. The prevalence of abusive behavior was 15.4%. Stepwise multiple regression analysis revealed that the sex of caregivers and scores on the Neuropsychiatric Inventory (NPI), Zarit Caregiver Burden scale, and Addenbrooke's Cognitive Examination had significant effects on the m-CTS scores. We demonstrated that in Japan, caregivers of the elderly with even clinically mild cognitive dysfunction exhibit abusive behavior toward them. The severity of the disease might reflect the prevalence of and factors that affect the abusive conflict score. PMID:23462386

  11. Cognitive-behavioral changes in amyotrophic lateral sclerosis: Screening prevalence and impact on patients and caregivers.

    PubMed

    Bock, Meredith; Duong, Y-Nhy; Kim, Anthony; Allen, Isabel; Murphy, Jennifer; Lomen-Hoerth, Catherine

    2016-01-01

    Our objective was to evaluate the association between cognitive-behavioral deficits and patient quality of life (QoL), caregiver burden, and disease stage in a population of patients with amyotrophic lateral sclerosis (ALS). We administered the ALS Cognitive-Behavioral Screen™ to 86 patients with ALS. Multiple regression was used to evaluate the association between cognitive or behavioral deficits and disease stage, patient QoL, and caregiver burden while controlling for clinically important variables. Of 86 participants enrolled, 53 (62%) had some degree of cognitive impairment, 32 (37%) were behaviorally impaired and four met both cognitive and behavioral screening criteria for frontotemporal dementia (FTD). The severity of cognitive-behavioral deficits was not associated with patient QoL. More pronounced cognitive deficits (beta = -1.4, p = 0.04) and behavioral symptoms (-0.69, p < 0.001) predicted higher caregiver burden. Self-reported QoL was lower in patients with more depressive symptoms (beta = -0.32, p < 0.001) and more advanced disease (beta =0.10, p = 0.01). In conclusion, general QoL for patients with ALS is not associated with cognitive or behavioral deficits. More severe cognitive deficits and caregiver-reported behavioral symptoms predict higher caregiver burden. Routine cognitive-behavioral screening can identify patients who require full neuropsychological examination, inform patient counseling, and identify caregivers in need of early, targeted interventions. PMID:27043386

  12. Attachment and caregiving relationships in families affected by parental incarceration.

    PubMed

    Shlafer, Rebecca J; Poehlmann, Julie

    2010-07-01

    This longitudinal, mixed method study focused on 57 families of children who participated in a mentoring program for children of incarcerated parents. Children ranged in age from 4 to 15 years. Monthly interviews were conducted with children, caregivers, and mentors during the first six months of program participation, and questionnaires were administered at intake and six months to assess caregiver-child and incarcerated parent-child relationships, contact with incarcerated parents, and children's behavior problems. Although some children viewed their incarcerated parents as positive attachment figures, other children reported negative feelings toward or no relationship with incarcerated parents. In addition, our assessments of children nine years old and older revealed that having no contact with the incarcerated parent was associated with children reporting more feelings of alienation toward that parent compared to children who had contact. Children's behavior problems were a primary concern, often occurring in a relational context or in reaction to social stigma associated with parental imprisonment. PMID:20582847

  13. Higher Incidence of Deteriorated Mental Health in Older People Being Mistakenly Labeled as Dementia: A Two-Year Consecutive Community-Dwelling Study in Shanghai, China.

    PubMed

    Xie, Chunyan; Chen, Duo; Jin, Chunlin; Du, Lixia; Wang, Changying; Xin, Hongyun; Feng, Zeyun; Yang, Yitong; Ding, Hansheng

    2016-01-01

    Dementia has been increasingly paid attention by policymakers in China. However, the majority of the public has an indistinct concept of dementia and its diagnostic criteria. Therefore, many abnormal characteristics and actions of older people are labeled as having dementia while diagnosed without dementia. We examined a multi-stage cluster sample of 11,223 participants aged 60 years and above who have been clinically confirmed by general practitioners as not having dementia in 2013, and 7,861 participants were willing to participate the following study and were followed-up in 2014. To assess the differences of status of older people who were mistakenly labeled as having dementia or not, we asked main caregivers 'Do you think this older person suffers from dementia?', and found out that 244 participants had been mistakenly labeled as having dementia since 2013. Related effects were measured using international generic scales as well, and the results showed that participants with better physical status deteriorated more rapidly if they were mistakenly labeled as having dementia. Additionally, the mental health of these 244 participants also deteriorated more quickly. Older adults that were not labeled as having dementia were more willing to participate in social activities relative to their labeled counterparts. In conclusion, being mistakenly labeled as having dementia without a medical diagnosis impaired older adults' physical functioning and mental health. Moreover, the reduction of social activities of labeled older people leads to separation and social exclusion. PMID:27075558

  14. A benefit-finding intervention for family caregivers of persons with Alzheimer disease: study protocol of a randomized controlled trial

    PubMed Central

    2012-01-01

    Background Caregivers of relatives with Alzheimer’s disease are highly stressed and at risk for physical and psychiatric conditions. Interventions are usually focused on providing caregivers with knowledge of dementia, skills, and/or support, to help them cope with the stress. This model, though true to a certain extent, ignores how caregiver stress is construed in the first place. Besides burden, caregivers also report rewards, uplifts, and gains, such as a sense of purpose and personal growth. Finding benefits through positive reappraisal may offset the effect of caregiving on caregiver outcomes. Design Two randomized controlled trials are planned. They are essentially the same except that Trial 1 is a cluster trial (that is, randomization based on groups of participants) whereas in Trial 2, randomization is based on individuals. Participants are randomized into three groups - benefit finding, psychoeducation, and simplified psychoeducation. Participants in each group receive a total of approximately 12 hours of training either in group or individually at home. Booster sessions are provided at around 14 months after the initial treatment. The primary outcomes are caregiver stress (subjective burden, role overload, and cortisol), perceived benefits, subjective health, psychological well-being, and depression. The secondary outcomes are caregiver coping, and behavioral problems and functional impairment of the care-recipient. Outcome measures are obtained at baseline, post-treatment (2 months), and 6, 12, 18 and 30 months. Discussion The emphasis on benefits, rather than losses and difficulties, provides a new dimension to the way interventions for caregivers can be conceptualized and delivered. By focusing on the positive, caregivers may be empowered to sustain caregiving efforts in the long term despite the day-to-day challenges. The two parallel trials will provide an assessment of whether the effectiveness of the intervention depends on the mode of

  15. Stress Process Model for Individuals With Dementia

    PubMed Central

    Judge, Katherine S.; Menne, Heather L.; Whitlatch, Carol J.

    2010-01-01

    Purpose: Individuals with dementia (IWDs) face particular challenges in managing and coping with their illness. The experience of dementia may be affected by the etiology, stage, and severity of symptoms, preexisting and related chronic conditions, and available informal and formal supportive services. Although several studies have examined particular features of IWD’s illness experience, few draw upon a conceptual model that outlines the global illness experience and the resulting stressors that commence with symptom onset, proliferate over time, and continue through the later stages of cognitive loss. Building on the work of Pearlin and colleagues (1990, Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583–594), this article proposes a stress process model (SPM) for IWDs that conceptualizes and examines the illness experience of IWDs. Implications: The proposed SPM for IWDs serves as a guide to (a) consider and understand the short- and long-term complexities of the illness experience for IWDs, (b) investigate specific hypotheses by outlining key stressors in the illness experience and by positing relationships among stressors and outcomes, and (c) help inform the development of interventions to prevent or reduce the negative stressors and enhance the positive experiences of living with a dementing illness. PMID:20022935

  16. Missing Drivers with Dementia: Antecedents and Recovery

    PubMed Central

    Rowe, Meredeth A.; Greenblum, Catherine A.; Boltz, Marie; Galvin, James E.

    2013-01-01

    OBJECTIVES To determine the circumstance in which persons with dementia become lost while driving, how missing drivers are found, and how Silver Alert notificationsare instrumental in those discoveries. DESIGN A retrospective, descriptive study. SETTING Retrospective record review. PARTICIPANTS Conducted using 156 records from the Florida Silver Alert program for the time period October, 2008 through May 2010. These alerts were issued in Florida for a missing driver with dementia. MEASUREMENTS Information derived from the reports on characteristics of the missing driver, antecedents to missing event and discovery of a missing driver. RESULTS and CONCLUSION The majority of missing drivers were males, with ages ranging from 58’94, who were being cared for by a spouse. Most drivers became lost on routine, caregiver-sanctioned trips to usual locations. Only 15% were in the act of driving when found with most being found in or near a parked car and the large majority were found by law enforcement officers. Only 40% were found in the county they went missing and 10% were found in a different state. Silver Alert notifications were most effective for law enforcement; citizen alerts resulted in a few discoveries. There was a 5% mortality rate in the study population with those living alone more likely to be found dead than alive. An additional 15% were found in dangerous situations such as stopped on railroad tracks. Thirty-two percent had documented driving or dangerous errors such as, driving thewrong way or into secluded areas, or walking in or near roadways. PMID:23134069

  17. [Non-pharmacologic approach in severe dementia].

    PubMed

    Pancrazi, Marie-Pierre; Métais, Patrick

    2005-03-01

    Care for patients with Alzheimer's disease, particularly with severe dementia, requires a global therapeutic strategy integrating pharmacological approach into the environmental dimensions, psychotherapeutics and rehabilitation. The objective is to maintain autonomy as long as possible but also to improve the quality of life by reducing the psychological suffering of patients and families. In severe dementia, behavioral techniques and organization of the environment are possible at home but, actually, most of the patients are institutionalized. Structures having a specific project of life, of care and specific architectural design should be preferred. Education and support for caregivers as well as training of the nursing staff are essential to develop better attitudes toward the patient, improve communication and optimize the quality of life. In spite of the low level of evidence in the evaluation of these strategies on account of the lack of adapted indicators and rarity of specific research, widely spread techniques can confer special purport to this difficult stage for the patients and their family. PMID:15899604

  18. Family solidarity and informal care: the case of care for people with dementia.

    PubMed

    ter Meulen, Ruud; Wright, Katharine

    2012-09-01

    According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia: ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role. PMID:22827317

  19. Severe potential drug-drug interactions in older adults with dementia and associated factors

    PubMed Central

    Bogetti-Salazar, Michele; González-González, Cesar; Juárez-Cedillo, Teresa; Sánchez-García, Sergio; Rosas-Carrasco, Oscar

    2016-01-01

    OBJECTIVE: To identify the main severe potential drug-drug interactions in older adults with dementia and to examine the factors associated with these interactions. METHOD: This was a cross-sectional study. The enrolled patients were selected from six geriatrics clinics of tertiary care hospitals across Mexico City. The patients had received a clinical diagnosis of dementia based on the current standards and were further divided into the following two groups: those with severe drug-drug interactions (contraindicated/severe) (n=64) and those with non-severe drug-drug interactions (moderate/minor/absent) (n=117). Additional socio-demographic, clinical and caregiver data were included. Potential drug-drug interactions were identified using Micromedex Drug Reax 2.0® database. RESULTS: A total of 181 patients were enrolled, including 57 men (31.5%) and 124 women (68.5%) with a mean age of 80.11±8.28 years. One hundred and seven (59.1%) patients in our population had potential drug-drug interactions, of which 64 (59.81%) were severe/contraindicated. The main severe potential drug-drug interactions were caused by the combinations citalopram/anti-platelet (11.6%), clopidogrel/omeprazole (6.1%), and clopidogrel/aspirin (5.5%). Depression, the use of a higher number of medications, dementia severity and caregiver burden were the most significant factors associated with severe potential drug-drug interactions. CONCLUSIONS: Older people with dementia experience many severe potential drug-drug interactions. Anti-depressants, antiplatelets, anti-psychotics and omeprazole were the drugs most commonly involved in these interactions. Despite their frequent use, anti-dementia drugs were not involved in severe potential drug-drug interactions. The number and type of medications taken, dementia severity and depression in patients in addition to caregiver burden should be considered to avoid possible drug interactions in this population. PMID:26872079

  20. Maze Test Performance and Reported Driving Ability in Early Dementia

    PubMed Central

    Ott, Brian R.; Heindel, William C.; Whelihan, William M.; Caron, Mark. D.; Piatt, Andrea L.; DiCarlo, Margaret A.

    2012-01-01

    A battery of standard neuropsychological tests examining various features of executive function, attention, and visual perception was administered to 27 subjects with questionable to mild dementia and compared to a 4-point caregiver rating scale of driving ability. Based on the results of this study, a computerized maze task, employing 10 mazes, was administered to a second sample of 40 normal elders and questionable to moderately demented drivers. Comparison was made to the same caregiver rating scale as well as to crash frequency. In the first study of neuropsychological tests, errors on Porteus Mazes emerged as the only significant predictor of driving ability in a stepwise regression analysis. In the follow-up study employing the computerized mazes, all 10 mazes were significantly related to driving ability ratings. Computerized tests of maze performance offer promise as a screening tool to identify potential driving impairment among cognitively impaired elderly and demented drivers. PMID:12967057

  1. Virtual Dementia Tour helps sensitize health care providers.

    PubMed

    Beville, P K

    2002-01-01

    A review of the literature on sensitivity training among caregivers for the elderly revealed that no programs focused specifically on the cognitive changes that occur due to aging. Second Wind Dreams, a national nonprofit organization committed to improving society's perception of aging, conducted a study in which degenerative physical symptoms common for this population, such as impaired vision and motor skills, were simulated in a group of 146 subjects who worked in the field of elder care to give them a broader sense of the patient's perspective. Overwhelmingly, participants in the study came away with heightened awareness of the plight of confused elders and a strong sense that the high behavioral expectations caregivers have for dementia patients are unrealistic and need to change. PMID:12083349

  2. Barriers to treatment: the unique challenges for physicians providing dementia care.

    PubMed

    Foster, N L

    2001-01-01

    Evaluating and treating dementia is intellectually demanding and enormously satisfying. However, physicians providing dementia care also confront unique challenges that cause discomfort and overwhelming frustration unless they are recognized and overcome. Physicians must care for individuals who do not adopt the "sick role." They must establish and maintain rapport with patients while also approaching collateral sources to obtain a complete history. They must develop a complex alliance with the patient, caregivers, community agencies, and other health professionals to provide effective treatment. Physicians must relate "bad news" to several people at once who are unequally prepared for it, while dealing with their own diagnostic uncertainty. Furthermore, physicians must honor patient autonomy and balance it with the needs of caregivers. Since the demands of providing dementia care are not typical of most medical practice, the special attributes needed are often not taught to students or adequately reimbursed by health insurance. The quality of dementia care will improve when strategies that address these aspects of care for patients with dementia are widely adopted. PMID:11794447

  3. Comparing Caregiver and Clinician Predictions of Fitness to Drive in People With Alzheimer’s Disease

    PubMed Central

    Bixby, Kimberly; Ott, Brian R.

    2015-01-01

    This observational study investigated family caregiver and clinician ratings of 75 drivers with Alzheimer’s disease against scores on a standardized road test and a naturalistic driving evaluation. Clinician ratings by a physician specialized in dementia were significantly associated with road test error scores (r = .25, p = .03) but not naturalistic driving errors or global ratings of road test and naturalistic driving performance. Caregiver ratings were unrelated to either driving assessment, with two exceptions; adult child ratings of driving ability were correlated with road test error scores (r = .43, p = .02), and spousal ratings were inversely correlated with global ratings. Clinician ratings of driving competence were modestly correlated with road test performance, but caregiver ratings were more complex. Adult children may be more accurate reporters of driving ability than spouses, possibly because of less personal bias, but the reasons behind this discrepancy need further investigation. PMID:25871601

  4. Older Adults' and Caregivers' Perspectives on In-Home Monitoring Technology.

    PubMed

    Epstein, Iris; Aligato, Allan; Krimmel, Tyler; Mihailidis, Alex

    2016-06-01

    In the past decade, there has been an increase in the application and investigation of in-home monitoring systems to support older adults with dementia and their caregivers. The current study focused on a monitoring system that included the use of motion sensors and Internet connections with one-way communication capabilities. Only a limited number of studies have explored and compared older adults' and caregivers' perspectives on such monitoring systems. The purpose of the current study was to explore older adults' and caregivers' perspectives on in-home monitoring systems using photo elicitation techniques. Three overarching themes emerged: (a) feeling cared for (which included two sub-themes), (b) feeling cared about (which included three sub-themes), and (c) suggestions for change (which included four sub-themes). These results revealed the duality of care when using in-home monitoring. Clinical and other future implications are discussed. [Journal of Gerontological Nursing, 42(6), 43-50.]. PMID:26977706

  5. Caregiver Mental Health and Potentially Harmful Caregiving Behavior: The Central Role of Caregiver Anger

    ERIC Educational Resources Information Center

    MacNeil, Gordon; Kosberg, Jordan I.; Durkin, Daniel W.; Dooley, W. Keith; DeCoster, Jamie; Williamson, Gail M.

    2010-01-01

    Purpose: Caregivers feeling stress and experiencing mental health problems can be at risk for engaging in abusive acts against elderly care recipients. Potentially harmful behavior (PHB) was used as a measure of caregivers' engagement in, or fear of engagement in, behavior that places dependent care recipients at risk of physical and/or…

  6. Dementia and personal identity: implications for decision-making.

    PubMed

    Chiong, Winston

    2013-01-01

    Changes in personality and judgment in dementia raise both practical and philosophic problems concerning personal identity. For example, if a patient's values and preference have been altered by disease, should caregivers' decisions for the patient be guided by their understanding of the patient's premorbid values and preferences, or of the patient's current values and preferences? Some authors have argued, based on philosophic accounts of personal identity, that the previously healthy person and the demented patient should be regarded as two different people; therefore, previous values and preferences lose their authority. Meanwhile, others have argued that when patients lose their ability to act autonomously, their "precedent autonomy" must be respected by following their earlier wishes. These debates can inform our thinking about the proper interpretation of advance directives, as well as other practical questions such as how carriers of dementia gene mutations should think about their future. PMID:24182394

  7. Non-pharmacologic treatment of insomnia in persons with dementia.

    PubMed

    Shub, Denis; Darvishi, Roham; Kunik, Mark E

    2009-02-01

    The prevalence of insomnia increases with age and affects up to 35% of community-dwelling adults with dementia. Sleep disturbances and associated cognitive and behavioral symptoms in this patient population can be a significant contributor to morbidity, mortality, and caregiver burden. Despite the frequency with which sleep disorders are encountered in primary care, few evidence-based guidelines are available to guide physician treatment plans. Sedative-hypnotic medications are commonly prescribed but are associated with significant adverse effects and have limited efficacy data. Non-pharmacologic treatments can be safe and effective adjuncts or alternatives to medications but are often underused in clinical practice. This article reviews practical applications of modalities such as light therapy, exercise, and sleep-hygiene modification in treating insomnia in persons with dementia. PMID:19256583

  8. Dementia due to metabolic causes

    MedlinePlus

    ... Alzheimer Disease, and Dementia . 2nd ed. Philadelphia, PA: Elsevier; 2016:chap 14. Douglas VC, Josephson SA. Dementia ... Neurology and General Medicine . 5th ed. Philadelphia, PA: Elsevier; 2014:chap 61. Knopman DS. Alzheimer disease and ...

  9. Symptoms of Lewy Body Dementia

    MedlinePlus

    ... of the environment or personal interactions, and the natural progression of the disease. All Rights Reserved Lewy Body Dementia Association, Inc. 912 Killian Hill Road S.W., Lilburn, GA 30047 © 2016 Lewy Body Dementia Association, Inc. Connect ...

  10. Emerging roles for telemedicine and smart technologies in dementia care

    PubMed Central

    Bossen, Ann L; Kim, Heejung; Williams, Kristine N; Steinhoff, Andreanna E; Strieker, Molly

    2015-01-01

    Demographic aging of the world population contributes to an increase in the number of persons diagnosed with dementia (PWD), with corresponding increases in health care expenditures. In addition, fewer family members are available to care for these individuals. Most care for PWD occurs in the home, and family members caring for PWD frequently suffer negative outcomes related to the stress and burden of observing their loved one’s progressive memory and functional decline. Decreases in cognition and self-care also necessitate that the caregiver takes on new roles and responsibilities in care provision. Smart technologies are being developed to support family caregivers of PWD in a variety of ways, including provision of information and support resources online, wayfinding technology to support independent mobility of the PWD, monitoring systems to alert caregivers to changes in the PWD and their environment, navigation devices to track PWD experiencing wandering, and telemedicine and e-health services linking caregivers and PWD with health care providers. This paper will review current uses of these advancing technologies to support care of PWD. Challenges unique to widespread acceptance of technology will be addressed and future directions explored. PMID:26636049

  11. Developing culturally diverse direct caregivers for care work with older adults: challenges and potential strategies.

    PubMed

    Davis, Boyd H; Smith, Mary K

    2013-01-01

    This discussion presents real-world examples of challenges that occur in geriatric training as a contribution to the ongoing conversation about tailored training for direct caregivers. Numerous discussions are available on the need for more geriatric training in nursing, including aspects of care for patients with dementia, but few if any studies have identified a similar need on behalf of direct care workers, including home health care aides,personal care aides, and nursing assistants who are not part of a licensure track or a baccalaureate-based nursing curriculum. This discussion examines three cultural factors that underlie challenges for nursing educators and supervisors in dementia care who oversee direct care workers: (1) the effect of immigrant cultures and languages; (2) the effect of different intergenerational cultural constructs; and (3) the effect of culturally derived attitudes about aging and dementia. Strategies to address these challenges are offered. PMID:23413445

  12. The effect of expressive physical touch on patients with dementia.

    PubMed

    Kim, E J; Buschmann, M T

    1999-06-01

    This study explored the effect of expressive physical touch with verbalization (EPT/V) on anxiety and dysfunctional behavior in patients with dementia using a one group repeated measures design. The study findings are that (1) anxiety is lower immediately following EPT/V and (2) EPT/V causes decreasing episodes of dysfunctional behavior. Therefore, it behooves caregivers and family members to use expressive physical touch and verbalization when caring for these patients, since it is cost-effective, simple to learn and practice and it is most effective in improving and maintaining patient's high quality of life. PMID:10404293

  13. Frontotemporal Dementias: A Review

    PubMed Central

    Weder, Natalie D; Aziz, Rehan; Wilkins, Kirsten; Tampi, Rajesh R

    2007-01-01

    Dementia is a clinical state characterized by loss of function in multiple cognitive domains. It is a costly disease in terms of both personal suffering and economic loss. Frontotemporal dementia (FTD) is the term now preferred over Picks disease to describe the spectrum of non-Alzheimers dementias characterized by focal atrophy of the frontal and anterior temporal regions of the brain. The prevalence of FTD is considerable, though specific figures vary among different studies. It occurs usually in an age range of 35–75 and it is more common in individuals with a positive family history of dementia. The risk factors associated with this disorder include head injury and family history of FTD. Although there is some controversy regarding the further syndromatic subdivision of the different types of FTD, the three major clinical presentations of FTD include: 1) a frontal or behavioral variant (FvFTD), 2) a temporal, aphasic variant, also called Semantic dementia (SD), and 3) a progressive aphasia (PA). These different variants differ in their clinical presentation, cognitive deficits, and affected brain regions. Patients with FTD should have a neuropsychiatric assessment, neuropsychological testing and neuroimaging studies to confirm and clarify the diagnosis. Treatment for this entity consists of behavioral and pharmacological approaches. Medications such as serotonin reuptake inhibitors, antipsychotics, mood stabilizer and other novel treatments have been used in FTD with different rates of success. Further research should be directed at understanding and developing new diagnostic and therapeutic modalities to improve the patients' prognosis and quality of life. PMID:17565679

  14. [Dementia and oral health].

    PubMed

    Wierink, C D; de Baat, C

    2009-02-01

    The first part of this article is a translation of an editorial which appeared in the journal Gerodontology. The author warns that a great increase is expected in the number of dementia patients in the United Kingdom and he argues that care for these patients be given a high place on the national agenda. Dementia was also a major issue at the meeting of the International Association for Dental Research in March 2007. Several international studies presented there indicated that elderly people with dementia constitute a group at risk with respect to oral health. In the evaluation of the editorial, the situation in The Netherlands is described. There is also serious concern in The Netherlands about the statistics with respect to dementia. Due to the growing number of frail elderly people having a natural dentition, the need for professional oral care will increase. General practitioners have the important task of providing adequate oral health care for elderly people suffering from dementia who are still living at home. Guidelines for Oral Care, having to do with the improvement of oral care in institutions, appeared recently. With the guidelines, a good basis for developing adequate oral health care of frail elderly people is available. However, the implementation of these guidelines will require some attention. PMID:19280891

  15. Elderly Psychiatric Patient Status and Caregiver Perceptions as Predictors of Caregiver Burden.

    ERIC Educational Resources Information Center

    Pearson, Jane; And Others

    1988-01-01

    Examined aspects of patient status and caregiver perceptions in 46 pairs of elderly psychiatric patients and their caregivers. Found that significant predictors of caregiver burden included disruptive patient behavior, caregiver distress, and patients' functional limitations. Findings suggest that predictors of caregiver burden vary with patient…

  16. Meaning in Caregiving and Its Contribution to Caregiver Well-Being.

    ERIC Educational Resources Information Center

    Noonan, Anne E.; Tennstedt, Sharon L.

    1997-01-01

    Examines the relationship between meaning in caregiving (positive beliefs about the caregiving situation and the self as caregiver) and the psychological well-being of 131 informal caregivers to community-residing frail elders. Results indicate that meaning in caregiving explained a significant portion of the differences in depression and…

  17. 38 CFR 71.40 - Caregiver benefits.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 38 Pensions, Bonuses, and Veterans' Relief 2 2011-07-01 2011-07-01 false Caregiver benefits. 71.40 Section 71.40 Pensions, Bonuses, and Veterans' Relief DEPARTMENT OF VETERANS AFFAIRS (CONTINUED) CAREGIVERS BENEFITS AND CERTAIN MEDICAL BENEFITS OFFERED TO FAMILY MEMBERS OF VETERANS § 71.40 Caregiver benefits. (a) General Caregiver benefits....

  18. Application of a Multidimensional Caregiver Burden Inventory.

    ERIC Educational Resources Information Center

    Novak, Mark; Guest, Carol

    1989-01-01

    Developed 24-item, 5-subscale Caregiver Burden Inventory (CBI) as useful diagnostic tool for professional caregivers. Administered CBI to 107 caregivers of cognitively impaired older people. Individual cases illustrated that caregivers with same total burden scores can have markedly different patterns of burden and different social and…

  19. Navajo Caregivers' Perceptions of Early Intervention Services.

    ERIC Educational Resources Information Center

    Applequist, Karen L.; Bailey, Donald B., Jr.

    2000-01-01

    This study investigated 52 Navajo family caregiver perceptions about early intervention services and supplemental information was gathered from 15 early interventionists identified by caregivers. Overall, caregivers were satisfied with services. Caregivers' perceptions of program family-centeredness had a strong positive relationship with…

  20. Health Behaviors among Baby Boomer Informal Caregivers

    ERIC Educational Resources Information Center

    Hoffman, Geoffrey J.; Lee, Jihey; Mendez-Luck, Carolyn A.

    2012-01-01

    Purpose of the Study: This study examines health-risk behaviors among "Baby Boomer" caregivers and non-caregivers. Design and Methods: Data from the 2009 California Health Interview Survey of the state's non-institutionalized population provided individual-level, caregiving, and health behavior characteristics for 5,688 informal caregivers and…