Science.gov

Sample records for contact dementia caregivers

  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. Does working with the Veder Contact Method influence the job satisfaction of caregivers? A non-randomized controlled trial in nursing homes for people with dementia.

    PubMed

    Boersma, P; Dröes, R M; Lissenberg-Witte, B I; van Meijel, B; van Weert, J C M

    2017-08-22

    Person-centered care interventions can improve the quality of life and decrease behavioral problems of people with dementia. Although not convincingly proven, person-centered care interventions may benefit the caregivers as well. This study aims to gain insight into how working with the Veder Contact Method (VCM) - a new person-centered care method - influences the job satisfaction of caregivers. Within a quasi-experimental study, the job satisfaction of caregivers of six experimental wards (n = 75) was compared with caregivers of six control wards (n = 36) that applied Care-As-Usual. The Leiden Quality of Work Questionnaire (LQWQ) was filled in by caregivers in both conditions. Additionally, on the experimental wards, qualitative research, i.e. focus groups with 42 caregivers and interviews with 11 managers, was conducted to obtain a deeper understanding of the influence of applying VCM on caregivers' job satisfaction. The transcripts were analyzed using deductive analysis. No quantitatively significant differences were found on the subscales of the LQWQ: work and time pressure, job satisfaction, autonomous decision making, social support from colleagues, and social support from supervisors. From the qualitative research, some caregivers and managers reported that implementing VCM contributed to their job satisfaction and that applying VCM supported handling difficult behavior and depressed mood of residents and contributed to team building. No significant effects on job satisfaction were demonstrated. Qualitative findings indicate that VCM positively influences the daily work performances of nursing home caregivers. The relation between the experience of offering quality care and job satisfaction of caregivers needs further investigation.

  3. 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.

  4. Caregiver Stress and the Patient With Dementia.

    PubMed

    Sanders, Amy E

    2016-04-01

    Informal caregivers (often, but not exclusively, family members) are essential to the clinical care of a patient with dementia. Most caregivers are untrained and unpaid. As a result, caregivers often experience stress caused by the caregiving experience; they are the "invisible second patients" in dementia care. Clinicians can help caregivers by supporting them in their role and by referring them to additional resources for support.

  5. Dementia care in European countries, from the perspective of people with dementia and their caregivers.

    PubMed

    Karlsson, Staffan; Bleijlevens, Michel; Roe, Brenda; Saks, Kai; Martin, Maria Soto; Stephan, Astrid; Suhonen, Riita; Zabalegui, Adelaida; Hallberg, Ingalill R

    2015-06-01

    To investigate persons with dementia and their informal caregivers' views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countries. Living with dementia and being next of kin to a person with dementia means having to live through stages that have different characteristics, needs, challenges and requirements. Qualitative research. Focus groups were conducted in England, Estonia, Finland, France, Germany, The Netherlands, Spain and Sweden. Persons with dementia and their informal caregivers (N = 137) participated in focus group interviews during 2011. Content analysis generated a tentative model of information, communication and collaboration for people with dementia and their caregivers, which was then tested. The core finding was that information, communication and collaboration were to be focused on the persons with dementia and the informal caregivers. Entering into the trajectory of the disease and its consequences was addressed as an important point of departure. The relation to professional care required establishing a trusting relationship, tailor-made intervention and a single person or organization to contact. Professional knowledge and commitment, variation in service and care adapted to needs were important. As focus of care is on the person with dementia and their informal caregivers, a dyadic approach seems most suitable for dementia care. A trusting relationship and a specific person or organization to contact seem to be indicators of best practice, as does adaptation to the needs of the person with dementia and their informal caregiver. © 2014 John Wiley & Sons Ltd.

  6. Overlooking Informal Dementia Caregivers' Burden.

    PubMed

    Riedel, Oliver; Klotsche, Jens; Wittchen, Hans-Ulrich

    2016-07-01

    Patients with Alzheimer's disease (AD) need early caregiver support. Caregivers often have poor health, but usually do not have time to seek medical advice for their own conditions. Patients' physicians, who are frequently the sole medical practitioner caregivers contact regularly, have an important function in recognizing family caregivers' burdens. The current study investigated to what extent medical practitioners recognized family caregivers' problems. In a two-staged survey in neurology outpatient care, caregivers of patients with mild or moderate AD were enrolled and assessed by physicians regarding their physical and mental burden, as well as need for help and advice about AD. Subsequently, caregivers' mental health was evaluated in a comprehensive diagnostic interview by blinded psychologists. Overall, 73.7% of caregivers had at least one somatic condition and 43.7% had clinically relevant depressive symptoms (of these, 37.5% met criteria for major depression). The findings suggest that the burden of a substantial proportion of affected family caregivers is overlooked. [Res Gerontol Nurs. 2016; 9(4):167-174.]. Copyright 2016, SLACK Incorporated.

  7. Patient and caregiver goals for dementia care.

    PubMed

    Jennings, Lee A; Palimaru, Alina; Corona, Maria G; Cagigas, Xavier E; Ramirez, Karina D; Zhao, Tracy; Hays, Ron D; Wenger, Neil S; Reuben, David B

    2017-03-01

    Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers. We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care. Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English- and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia. Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.

  8. What causes grief in dementia caregivers?

    PubMed

    Warchol-Biedermann, Katarzyna; Mojs, Ewa; Gregersen, Rikke; Maibom, Kirsten; Millán-Calenti, José C; Maseda, Ana

    2014-01-01

    Alzheimer's disease (AD) is the most prevalent neurodegenerative disease in the world. Most AD patients become dependent on their relatives, i.e. family caregivers. Providing care to a person with AD influences caregiver's life and leads to feelings of grief, which often precede caregiver depression. The purpose of the article was to evaluate the Meuser and Marwit Caregiver Grief Inventory (MM-CGI-50) for use in Polish family caregivers and to find out determinants of grief of family caregivers of AD individuals living in Poland. A sample of 151 spouse and adult child caregivers of community-dwelling AD patients (95 females and 56 males) was interviewed to determine the influence of such factors as caregiver's age, gender, family relation to the care recipient (CR) and caregiving-related changes in caregiver's working time, leisure time and material status to find out the impact of caregiving role on intensity of caregiver grief. Caregiver grief was measured by means of MM-CGI-50. Additionally, carers were administered a questionnaire including patient's and caregiver's demographics. Also, CR's dementia assessment was informant-based and determined with investigator-administered clinical dementia rating (CDR) scale. Of all analyzed factors, only caregiver's informant dementia rating significantly influenced caregiver grief. To conclude, the effect of caregiver's age, gender, family relation to the CR and caregiving-related changes in caregiver's working time; leisure time and material status could not be found. To add, MM-CGI-50 can be effectively used to assess grief in Polish family caregivers of AD patients. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

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

    PubMed

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

    2010-08-01

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

  10. A videophone psychosocial intervention for dementia caregivers.

    PubMed

    Czaja, Sara J; Loewenstein, David; Schulz, Richard; Nair, Sankaran N; Perdomo, Dolores

    2013-11-01

    Available services and intervention programs for dementia caregivers are often underutilized because of issues such as cost, logistics, lack of knowledge about available services, or insufficient support from others. Information technologies offer the potential of removing these barriers and facilitating the ability of caregivers to access needed support. This project evaluated the feasibility and efficacy of technology-based psychosocial intervention among minority family caregivers of dementia patients. A feasibility and efficacy trial. Participants' homes in the Greater Miami Community. One hundred ten (56 Hispanic American and 54 African American) caregivers of patients with dementia. A technology-based multi-component psychosocial intervention was delivered in-home and via videophone technology over 5 months. The intervention was modeled after the REACH II intervention and targeted known areas of caregiver risk. Standardized measures of depression, caregiver burden, social support, and the caregivers' perception of the caregiver's experience were administered at baseline and 5 months post-randomization. Overall, caregivers who received the intervention reported a decrease in burden, an increase in perceived social support and positive perceptions of the caregiving experience. No effect was observed for depression. Most participants indicated that the intervention improved their caregiving skills and found the technology to be easy to use. A technology-based format was feasible for delivering a multi-component intervention to minority family dementia caregivers. The intervention improved caregiver outcomes for both Hispanic and African American caregivers. The results suggest that technology may help eliminate disparities in access to caregiver intervention programs. Copyright © 2013 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

  11. Caregiving for Alzheimer's Disease or Other Dementia

    MedlinePlus

    ... What's this? Submit Button Caregiving for Person with Alzheimer's Disease or a related Dementia Recommend on Facebook Tweet Share Compartir What is Alzheimer’s Disease? Alzheimer’s disease is the most common form ...

  12. Psychosocial telephone intervention for dementia caregivers: A randomized, controlled trial.

    PubMed

    Tremont, Geoffrey; Davis, Jennifer D; Papandonatos, George D; Ott, Brian R; Fortinsky, Richard H; Gozalo, Pedro; Yue, Mun Sang; Bryant, Kimberly; Grover, Christine; Bishop, Duane S

    2015-05-01

    Identifying effective and accessible interventions for dementia caregivers is critical as dementia prevalence increases. Examine the effects of a telephone-based intervention on caregiver well-being. Randomized, controlled trial. Academic medical center. Two hundred and fifty distressed, family, dementia caregivers. Caregivers randomized to receive 16 telephone contacts over 6 months of either the Family Intervention: Telephone Tracking-Caregiver (FITT-C) or Telephone Support (TS). Primary outcome variables were family caregivers' depressive symptoms, burden, and reactions to care recipients' behavior problems at 6 months. The FITT-C intervention resulted in significantly improved caregiver depressive symptoms (P = .003; 27% net improvement) and less severe reactions to care-recipient depressive behaviors (P = .009; 29% net improvement) compared with the control condition (TS). An entirely telephone-based intervention improves caregivers' depressive symptoms and reactions to behavior problems in the care recipient and is comparable with reported results of face-to-face interventions. Copyright © 2015 The Alzheimer's Association. Published by Elsevier Inc. All rights reserved.

  13. 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

  14. Resourcefulness Training for Dementia Caregivers: Establishing Fidelity.

    PubMed

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

    2016-12-01

    Providing care for an elder with dementia can produce extreme stress that adversely affects caregiver health. Learning to be resourceful, which involves practicing resourcefulness skills using a journal or voice recorder, may reduce caregiver stress. However, before testing the effectiveness of journaling and voice recording as resourcefulness training (RT) practice methods, intervention fidelity should first be established. This pilot trial with 63 women dementia caregivers examined the fidelity of journaling and voice recording and whether allowing a choice between the methods affected RT intervention fidelity. Following RT, Resourcefulness Scale scores were similar for journal and recorder methods but higher for caregivers in the choice versus random condition. Patterns of RT skill use documented in journals or recordings were similar for choice and random conditions and for journal and recorder methods. The results support the implementation fidelity of RT that allows caregivers to choose a method to reinforce their resourcefulness skills. © The Author(s) 2016.

  15. Resourcefulness Training for Dementia Caregivers: Establishing Fidelity

    PubMed Central

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

    2016-01-01

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

  16. Psychosocial Telephone Intervention for Dementia Caregivers: A Randomized, Controlled Trial

    PubMed Central

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

    2014-01-01

    Background Identifying effective and accessible interventions for dementia caregivers is critical as dementia prevalence increases. Objective Examine the effects of a telephone-based intervention on caregiver well-being. Design Randomized, controlled trial. Setting Academic medical center. Participants 250 distressed, family, dementia caregivers. Intervention Caregivers randomized to receive 16 telephone contacts over 6 months of either the Family Intervention: Telephone Tracking–Caregiver (FITT-C) or Telephone Support (TS). Outcome Primary outcome variables were family caregivers’ depressive symptoms, burden, and reactions to care recipients’ behavior problems at 6 months. Results The FITT-C intervention resulted in significantly improved caregiver depressive symptoms (p = 0.003; 27% net improvement) and less severe reactions to care-recipient depressive behaviors (p = 0.009; 29% net improvement) compared to the control condition (TS). Conclusion An entirely telephone-based intervention improves caregivers’ depressive symptoms and reactions to behavior problems in the care recipient and is comparable to reported results of face-to-face interventions. PMID:25074341

  17. Dementia: The Experience of Family Caregivers.

    ERIC Educational Resources Information Center

    Chenoweth, Barbara; Spencer, Beth

    1986-01-01

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

  18. Dementia, Caregiving, and Controlling Frustration

    MedlinePlus

    ... I need a break sometimes." PERSONALIZING You take responsibility for a negative occurrence that is beyond your ... for Help You cannot take on all the responsibilities of caregiving by yourself. It is essential that ...

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

    PubMed Central

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

    2010-01-01

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

  20. Physiological and functional consequences of caregiving for relatives with dementia

    PubMed Central

    Fonareva, Irina; Oken, Barry S.

    2014-01-01

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

  1. Family caregivers' role implementation at different stages of dementia.

    PubMed

    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

    The purpose of this study was to explore family caregivers' role-implementation experiences at different stages of dementia. 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. 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. 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.

  2. Physiological and functional consequences of caregiving for relatives with dementia.

    PubMed

    Fonareva, Irina; Oken, Barry S

    2014-05-01

    Chronic stress negatively affects health and well-being. A growing population of informal dementia caregivers experience chronic stress associated with extraordinary demands of caring for a relative with dementia. This review summarizes physiological and functional changes due to chronic dementia caregiver stress. A literature search for papers assessing effects of dementia caregiving was conducted focusing on publications evaluating differences between caregivers and non-caregivers in objective measures of health and cognition. The review identified 37 studies describing data from 4,145 participants including 749 dementia caregivers and 3,396 non-caregiver peers. Objective outcome measures affected in dementia caregivers included markers of dyscoagulation, inflammation, and cell aging as well as measures of immune function, sleep, and cognition. Though diverse in designs, samples, and study quality, the majority of the studies indicated increased vulnerability of dementia caregivers to detrimental changes in health and cognition. Demographic and personality characteristics moderating or mediating effects of chronic stress in caregivers were also reviewed. There is accumulating evidence that chronic dementia caregiver stress increases their vulnerability to disease and diminishes their ability to provide optimal care. Clinicians and society need to appreciate the extent of deleterious effects of chronic stress on dementia caregiver health.

  3. Dementia Caregiver Grief and Bereavement: An Integrative Review.

    PubMed

    Arruda, Elizabeth H; Paun, Olimpia

    2017-06-01

    Alzheimer's disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings. The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer's disease and related dementias caregivers. This review identified five critical gaps in the existing evidence: (a) a lack of ethnic and gender diversity among caregivers studied, (b) limited use of valid instruments to study dementia caregiver grief and bereavement, (c) no substantive research examining dementia caregiver grief and bereavement for caregivers whose family members die in long-term care, (d) a lack of evidence examining the effect of hospice services on dementia caregiver grief and bereavement, and (e) a lack of grief and bereavement interventions for dementia caregivers whose family members die in long-term care.

  4. Leisure Activities, Caregiving Demands, and Catecholamine Levels in Dementia Caregivers

    PubMed Central

    Chattillion, Elizabeth A.; Mausbach, Brent T.; Roepke, Susan K.; von Känel, Roland; Mills, Paul J.; Dimsdale, Joel E.; Allison, Matthew; Ziegler, Michael G.; Patterson, Thomas L.; Ancoli-Israel, Sonia; Grant, Igor

    2012-01-01

    This study examined whether satisfaction from leisure activities moderates the relationship between caregiving demands (i.e., hours per day spent caring for a spouse with dementia) and resting levels of the catecholamines norepinephrine (NE) and epinephrine (EPI). Spousal caregivers (N=107; mean age 73.95±8.12 years) were assessed in home for plasma levels of NE and EPI, amount of care provided, and leisure satisfaction. Regression was used to determine whether leisure satisfaction moderated the relationship between hours providing care per day and catecholamine levels. A significant interaction was found between hours caregiving and leisure satisfaction for NE, but not for EPI. Post hoc regressions were conducted for both NE and EPI. At low leisure satisfaction, time spent caring for a spouse was positively associated with plasma NE (β = .41; p = .005) and EPI (β = .44; p = .003). In contrast, at high levels of satisfaction, time caregiving was not significantly associated with plasma NE (β = −.08; p = .57) or EPI (β = .23; p = .12). These findings suggest that leisure satisfaction may protect caregivers from increases in catecholamines, which have been implicated in cardiovascular risk. Further support for these findings may impact psychological treatments for distressed caregivers. PMID:22149759

  5. Dementia caregiver burden association with community participation aspect of social capital.

    PubMed

    Papastavrou, Evridiki; Andreou, Panayiota; Middleton, Nicos; Tsangari, Haritini; Papacostas, Savvas

    2015-12-01

    This study explores dementia caregiver burden and depression in the context of social capital and investigates the relationship of caregivers' burden with the perceptions of social capital of a non-caregivers' group. Social capital is the range of social contact that gives access to social, emotional and practical support, but little is known about dementia patients and their care by the family in that context. A cross-sectional correlational study was undertaken. Seventy family dementia caregivers matched to non-caregivers from the same neighbourhood participated in the study; three instruments were used to collect the data: the Zarit Burden Interview, the Centre for Epidemiological Studies-Depression scale and the Social Capital Questionnaire. Paired sample t-tests and correlation analysis were performed to examine all the hypotheses of interest. The data collection period was between October 2010-July 2011. Overall social capital scores were higher for the non-caregivers and lower for the caregivers with significant differences in each group. The correlation between caregiver burden and social capital showed that the overall burden score is significantly negatively related with the social capital factor 'non-caregivers' participation in the community'. Understanding the relation between caregiver burden and social capital will enhance nurses' capacity to explore the concept, the meaning and the politics of social capital to the benefit of dementia caregivers in the community. © 2015 John Wiley & Sons Ltd.

  6. Interventions for caregivers of patients with dementia.

    PubMed

    Martín-Carrasco, Manuel; Ballesteros-Rodríguez, Javier; Domínguez-Panchón, Ana I; Muñoz-Hermoso, Paula; González-Fraile, Eduardo

    2014-01-01

    With the aging of the population, an increasing number of people have dementia, most of whom are receiving home care. Caregivers are exposed to a variety of stressors, which may lead to feeling burdened, or to depression and anxiety. Various programs or structured interventions have been developed to prevent or lessen these negative consequences. The efficacy of these interventions is debated, mainly due to methodological differences between studies. Review studies so far have presented important discrepancies, thus perpetuating a lack of clarity regarding this important geriatric care problem. The effectiveness of interventions designed to prevent or reduce the burden and/or symptoms of anxiety and depression in informal caregivers are reviewed precisely and rigorously. A systematic review of randomized controlled studies assessing the efficacy of structured interventions on the variables of burden, depression and anxiety in informal caregivers of patients with dementia. The literature search yielded 997 references, of which 35 met the screening criteria. Of these studies, 51.4% had results that were statistically favorable to intervention. The methodology used varied widely between studies. Overall, the available evidence favors the implementation of structured intervention programs, although the results are heterogeneous. Psychoeducational interventions yield better results and can be better adapted to the needs of caregivers.

  7. 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)…

  8. 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)…

  9. Caregiving for Dementia in Family Members: Caregiving Burden and Prospects for Effective Intervention.

    ERIC Educational Resources Information Center

    Maiden, Robert J.; And Others

    Caring for a family member with dementia is a major source of stress for the caregiver. To assess the impact of caring for an impaired family member and to evaluate the effectiveness of intervention programs, 34 caregivers of relatives with dementia completed an amended form of the Philadelphia Geriatric Center's Caregiver Survey and two…

  10. Family caregivers of patients with frontotemporal dementia: An integrative review.

    PubMed

    Caceres, Billy A; Frank, Mayu O; Jun, Jin; Martelly, Melissa T; Sadarangani, Tina; de Sales, Paloma Cesar

    2016-03-01

    The purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers' health and well-being, and (3) identify coping strategies used by family caregivers. Frontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia. An integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles. Findings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful. Family caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique

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

    PubMed

    Moon, Heehyul; Dilworth-Anderson, Peggye

    2015-03-01

    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. 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. 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). 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. 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. 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. © The Author 2014. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  13. Caregiver burden for informal caregivers of patients with dementia: A systematic review.

    PubMed

    Chiao, C-Y; Wu, H-S; Hsiao, C-Y

    2015-09-01

    Dementia is an irreversible illness. The caregiver is expected to assume increased responsibility as the condition of the person with dementia declines. It is important to explore the factors constituting caregiver burden on the informal caregivers of people with dementia. The purpose of this article is to identify the factors constituting caregiver burden on the informal caregivers of people with dementia living in the community. A systematic review of the four databases, including PubMed, PsycINFO, CINAHL and the Cochrane Library, was carried out to access relevant articles published between 2003 and 2012. Twenty-one articles met the inclusion criteria of this study. Behavioural problems or psychological symptoms were the primary factor of the person with dementia that is associated with caregiver burden. Caregiver socio-demographical factors and psychological factors were the two primary factors of the caregiver burden. Several results of this study were based on studies that had their own limitations. Furthermore, the concept of caregiver 'burden' was not clearly defined in some of the studies; instead, the term was broadly defined. Factors of caregiver burden in regard to people with dementia living in the community were clarified in this review study. By identifying all of the factors, healthcare professionals can deliver appropriate assistance to relieve caregiver burden and improve the quality of caregiving for people with dementia. It is important to identify the factors of the burden on the caregivers of people with dementia living in the community to prevent early nursing home placement, deterioration of caregiver's health and reduce the adverse health outcomes for care recipients. A health-related policy should be formulated to help informal caregivers receive more professional assistance. Training opportunities should be provided for family caregivers to reduce the impact of caregiving on the delivery of effective care. © 2015 International Council of

  14. [Effectivity of early psychosocial counselling for family caregivers in general practioner based dementia care].

    PubMed

    Geschke, K; Scheurich, A; Schermuly, I; Laux, N; Böttcher, A; Fellgiebel, A

    2012-10-01

    Psychoeducation and professional support of family caregivers are regarded as important aspects in dementia care. In the context of a general practitioner's (GP) based dementia care project we investigated if professional counselling after making a diagnosis of dementia can reduce the development of depression in family caregivers. 42 patients with dementia and their family caregivers took part in the prospective, randomized study with a follow-up after 18 months. 29 families received psychosocial counselling, the control group was provided an information brochure about dementia including helpful contact addresses. Counselling included education about the illness. Additionally, the current individual needs were identified and assistance was administered if necessary. The counseling was rated as "very helpful" or "helpful" by most of the caregivers as well as by the partaking GPs. While depression rate between counseling and control group did not differ significantly at baseline, the depression rate was significantly increased in the control group after 18 month as compared to the intervention group. Despite the small study size we provide first strong evidence that early psychosocial counselling can reduce the development of depression in family caregivers. Early, professional counselling improves the quality of dementia care within a GP-based dementia care setting and it might stabilize and extend the home care duration of dementia patients. © Georg Thieme Verlag KG Stuttgart · New York.

  15. 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. © The Author(s) 2012.

  16. Leisure Time Activities and Mental Health in Informal Dementia Caregivers.

    PubMed

    Schüz, Benjamin; Czerniawski, Alana; Davie, Nicola; Miller, Lisa; Quinn, Michael G; King, Carolyn; Carr, Andrea; Elliott, Kate-Ellen J; Robinson, Andrew; Scott, Jenn L

    2015-07-01

    Dementia prevalence and the demand for dementia care are increasing. Informal caregiving accounts for a large proportion of dementia care, but can come at high cost for caregivers. Informal dementia caregivers are at higher risk for mental health problems than the general population. This study examines whether perceived change in leisure activities is one working mechanism linking stress and burden experience in dementia caregiving to lower mental health (depressive symptoms, anxiety symptoms, and reduced satisfaction with life), and whether there are group-based leisure activities that can buffer this detrimental effect. A total of 346 informal Australian dementia caregivers (88.15% female, age 18-82 years) participated in an online study. Mediation and moderation analyses using multiple regression demonstrated that perceived changes in leisure activities linked caregiving stress and burden to lower mental health, and that membership in groups engaging in affiliation or social activities attenuates negative effects of caregiving. Informal dementia caregivers benefit from satisfying leisure activities. In particular, engaging in social activities and self-help groups buffered the negative impact of caregiving. © 2015 The International Association of Applied Psychology.

  17. 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

  18. Potentially preventable hospitalizations in dementia: family caregiver experiences.

    PubMed

    Sadak, Tatiana; Foster Zdon, Susan; Ishado, Emily; Zaslavsky, Oleg; Borson, Soo

    2017-07-01

    Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions. Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers' reactions to the hospitalization and recollections of the events leading up to it. Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises. This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

  19. [A Prediction Model for Unmet Needs of Elders with Dementia and Caregiving Experiences of Family Caregivers].

    PubMed

    Choi, Sora; Park, Myonghwa

    2016-10-01

    The purposes of this study were to develop and test a prediction model for caregiving experiences including caregiving satisfaction and burden in dementia family caregivers. The stress process model and a two factor model were used as the conceptual frameworks. Secondary data analysis was done with 320 family caregivers who were selected from the Seoul Dementia Management Survey (2014) data set. In the hypothesis model, the exogenous variable was patient symptomatology which included cognitive impairment, behavioral problems, dependency in activity of daily living and in instrumental activity of daily living. Endogenous variables were caregiver's perception of dementia patient's unmet needs, caregiving satisfaction and caregiving burden. Data were analysed using SPSS/WINdows and AMOS program. Caregiving burden was explained by patient symptomatology and caregiving satisfaction indicating significant direct effects and significant indirect effect from unmet needs. The proposed model explained 37.8% of the variance. Caregiving satisfaction was explained by patient symptomatology and unmet needs. Mediating effect of unmet needs was significant in the relationship between patient symptomatology and caregiving satisfaction. Results indicate that interventions focusing on relieving caregiving burden and enhancing caregiver satisfaction should be provided to caregivers with high levels of dementia patients' unmet needs and low level of caregiving satisfaction.

  20. Persons with Dementia and Their Caregivers Using GPS.

    PubMed

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

    2015-01-01

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

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

    PubMed

    Nam, Ilsung

    2016-11-01

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

  2. Culturally Sensitive Dementia Caregiving Models and Clinical Practice

    ERIC Educational Resources Information Center

    Daire, Andrew P.; Mitcham-Smith, Michelle

    2006-01-01

    Family caregiving for individuals with dementia is an increasingly complex issue that affects the caregivers' and care recipients' physical, mental, and emotional health. This article presents 3 key culturally sensitive caregiver models along with clinical interventions relevant for mental health counseling professionals.

  3. Mental health among younger and older caregivers of dementia patients.

    PubMed

    Koyama, Asuka; Matsushita, Masateru; Hashimoto, Mamoru; Fujise, Noboru; Ishikawa, Tomohisa; Tanaka, Hibiki; Hatada, Yutaka; Miyagawa, Yusuke; Hotta, Maki; Ikeda, Manabu

    2017-03-01

    Caregiver burden in dementia is an important issue, but few studies have examined the mental health of younger and older family caregivers by comparing them with age- and gender-matched community residents. We aimed to compare the mental health of dementia caregivers with that of community residents and to clarify factors related to mental health problems in younger and older caregivers. We studied 104 dementia caregivers; 46 were younger (<65 years) and 58 were older (≥65 years). A total of 104 community residents who were matched for age and gender were selected. We compared depression (Center for Epidemiologic Studies Depression Scale for younger participants; Geriatric Depression Scale for older participants), health-related quality of life (QOL) short-form health survey (SF-8), sleep problems, and suicidal ideation between the caregivers and community residents by age. Behavioural and psychological symptoms of dementia, activities of daily living (ADL), and instrumental ADL were assessed among patients with dementia using the Neuropsychiatric Inventory, Physical Self-Maintenance Scale, and Lawton Instrumental ADL Scale, respectively. According to SF-8 results, both younger and older caregivers had significantly worse mental QOL than community residents (younger caregivers: 46.3 vs community residents: 49.7, P = 0.017; older caregivers: 48.2 vs community residents: 51.1, P = 0.024) but were not more depressive. Sleep problems were significantly more frequent in younger caregivers (39.1%) than in community residents (17.0%) (P = 0.017). Multiple regression analysis revealed that caregivers' deteriorated mental QOL was associated with patients' behavioural and psychological symptoms of dementia in younger caregivers and with dementia patients' instrumental ADL and female gender in older caregivers. Dementia caregivers had a lower mental QOL than community residents. To maintain caregivers' mental QOL, it is necessary to provide younger

  4. LEWY BODY DEMENTIA: CAREGIVER BURDEN AND UNMET NEEDS

    PubMed Central

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

    2010-01-01

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

  5. 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. © The Author(s) 2014.

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

    PubMed

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

    2013-01-01

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

  7. Impact of early onset dementia on caregivers: a review.

    PubMed

    van Vliet, Deliane; de Vugt, Marjolein E; Bakker, Christian; Koopmans, Raymond T C M; Verhey, Frans R J

    2010-11-01

    When it comes to dementia, caregiving can have adverse effects on the psychological and physical health of the informal caregiver. As yet, little is known about the impact of caring for a young dementia patient. This review provides an overview of the literature concerning the impact of early onset dementia (EOD) on informal caregivers and on children of EOD patients. The available literature comparing the impact on EOD and late onset dementia (LOD) caregivers will also be provided. PubMed, Psychinfo, and Cinahl were searched for articles that considered the psychological or psychosocial impact of EOD on informal caregivers and children. The methodological quality of the studies was assessed in order to make better judgments about the value of each article. Seventeen articles were included, of which the overall methodological quality was limited. The results showed that EOD caregivers experienced high levels of burden, stress, and depression. When compared with LOD caregivers, results were inconclusive. Furthermore, the caregivers of EOD patients experienced a variety of psychosocial problems, including relational problems, family conflict, problems with employment, financial difficulties, and problems concerning diagnosis. Whether there is a difference in impact between EOD and LOD on caregivers is still unclear. The studies conducted are methodologically too limited to answer this question. Nevertheless, it is clear that EOD caregivers do seem to experience high levels of psychological suffering and specific problems related to their phase in life. Copyright © 2010 John Wiley & Sons, Ltd.

  8. Randomized Trial of the Family Intervention: Telephone Tracking-Caregiver for Dementia Caregivers: Use of Community and Healthcare Resources.

    PubMed

    Tremont, Geoffrey; Davis, Jennifer D; Ott, Brian R; Galioto, Rachel; Crook, Cara; Papandonatos, George D; Fortinsky, Richard H; Gozalo, Pedro; Bishop, Duane S

    2017-05-01

    To examine the effects of a telephone-delivered intervention, Family Intervention: Telephone Tracking-Caregiver (FITT-C), on community support and healthcare use by dementia caregivers. Randomized, controlled trial. Academic medical center. Dyads (n = 250) of distressed informal dementia caregivers and care recipients. Caregivers were randomly assigned to receive the FITT-C (n = 133) or telephone support (TS; n = 117). Both groups received 16 telephone contacts from a master's-level therapist over 6 months. The FITT-C intervention provided psychoeducation, problem solving, and other directive approaches based on assessment of critical areas (e.g., mood, behavior, family functioning, social support). TS provided supportive therapeutic strategies. Outcome variables were caregiver report of community support service use, number of visits to the emergency department (ED) for caregivers and care recipients, and hospital stays for caregivers during the interventions. Intervention groups did not differ in demographic characteristics, use of support services, or use of healthcare resources at baseline. Caregivers who received the FITT-C used community support services at end of treatment significantly more than those receiving TS (P = .02). FITT-C caregivers had a significantly lower rate of ED visits (rate difference 9.5%, P = .048) and hospital stays (rate difference 11.4%, P = .01) over the 6-month course of the intervention than TS caregivers. Care recipient use of community or medical resources did not differ according to group. An entirely telephone-delivered intervention was effective in increasing caregiver engagement in community resources and reducing caregiver use of hospital-based healthcare resources. Results highlight the potential effect of FITT-C on healthcare use. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

  9. Randomized Trial of the Family Intervention: Telephone Tracking—Caregiver for Dementia Caregivers: Use of Community and Healthcare Resources

    PubMed Central

    Tremont, Geoffrey; Davis, Jennifer D.; Ott, Brian R.; Galioto, Rachel; Crook, Cara; Papandonatos, George D.; Fortinsky, Richard H.; Gozalo, Pedro; Bishop, Duane S.

    2017-01-01

    OBJECTIVES To examine the effects of a telephone-delivered intervention, Family Intervention: Telephone Tracking—Caregiver (FITT-C), on community support and healthcare use by dementia caregivers. DESIGN Randomized, controlled trial. SETTING Academic medical center. PARTICIPANTS Dyads (n = 250) of distressed informal dementia caregivers and care recipients. INTERVENTION Caregivers were randomly assigned to receive the FITT-C (n = 133) or telephone support (TS; n = 117). Both groups received 16 telephone contacts from a master’s-level therapist over 6 months. The FITT-C intervention provided psychoeducation, problem solving, and other directive approaches based on assessment of critical areas (e.g., mood, behavior, family functioning, social support). TS provided supportive therapeutic strategies. MEASUREMENTS Outcome variables were caregiver report of community support service use, number of visits to the emergency department (ED) for caregivers and care recipients, and hospital stays for caregivers during the interventions. RESULTS Intervention groups did not differ in demographic characteristics, use of support services, or use of healthcare resources at baseline. Caregivers who received the FITT-C used community support services at end of treatment significantly more than those receiving TS (P = .02). FITT-C caregivers had a significantly lower rate of ED visits (rate difference 9.5%, P = .048) and hospital stays (rate difference 11.4%, P = .01) over the 6-month course of the intervention than TS caregivers. Care recipient use of community or medical resources did not differ according to group. CONCLUSION An entirely telephone-delivered intervention was effective in increasing caregiver engagement in community resources and reducing caregiver use of hospital-based healthcare resources. Results highlight the potential effect of FITT-C on healthcare use. PMID:28008609

  10. Partners in dementia care: a care coordination intervention for individuals with dementia and their family caregivers.

    PubMed

    Judge, Katherine S; Bass, David M; Snow, A Lynn; Wilson, Nancy L; Morgan, Robert; Looman, Wendy J; McCarthy, Catherine; Kunik, Mark E

    2011-04-01

    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 multidimensional assessment and treatment approach, (c) ongoing monitoring and long-term relationships with families, and (d) a computerized information system to guide service delivery and fidelity monitoring. Data illustrating the use of the intervention were displayed for 93 veterans and their caregivers after 12 months in PDC. Descriptive data were provided for each major component of the intervention protocol, including: initial assessment, goals, action steps, and on-going monitoring. Care coordinators completed a 12-item questionnaire ascertaining the acceptability and feasibility of implementing PDC. Data from the assessments and goals indicated areas of need were not limited to any one issue or subset of issues, but were widely distributed across a variety of domains. Findings for action steps suggested a primary focus on getting/giving information and action-oriented tasks to access services and programs. Most action steps were assigned and completed by veteran's spouses and the majority were successfully accomplished. On average, families had two contacts per month with care coordinators. Few barriers were indicated by care coordinators in implementing PDC, highlighting the acceptability and feasibility of the PDC protocol. PDC addressed the diverse needs of individuals with dementia and their caregivers, including important non-medical care issues, such as understanding VA benefits, accessing community resources, and addressing caregiver strain. PDC proved to be a feasible model that was complementary to the existing programs of the 2 partnering organizations.

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

    PubMed Central

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

    2008-01-01

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

  12. Psychosocial impact of early onset dementia among caregivers.

    PubMed

    Kimura, Nathália R S; Maffioletti, Virgínia L R; Santos, Raquel L; Baptista, Maria Alice Tourinho; Dourado, Marcia C N

    2015-01-01

    There is growing recognition of early onset dementia (EOD) as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD) and their caregivers. To analyze the psychosocial impact of EOD in family caregivers. The study design was qualitative. Nine EOD caregivers (7 women) were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

  13. The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator.

    PubMed

    Liu, Hsin-Yi; Huang, Lian-Hua

    2016-12-21

    The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

  14. 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…

  15. 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…

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

    ERIC Educational Resources Information Center

    Lackey, Steven L.

    2014-01-01

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

  17. 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…

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

    ERIC Educational Resources Information Center

    Cavanaugh, John C.; And Others

    1989-01-01

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

  19. 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…

  20. 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…

  1. Ethical Concerns of Family Caregivers to Dementia Patients.

    ERIC Educational Resources Information Center

    Pratt, Clara; And Others

    1987-01-01

    Identified concerns in statements of 116 family caregivers to dementia patients. Concerns included ethical issues of family obligations for caregiving; conflicts with responsibilities to family, career or personal well-being; financing health care; standards of care; and patient roles in planning care. (Author/ABL)

  2. 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…

  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. 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

  5. Personalised caregiver support: effectiveness of psychosocial interventions in subgroups of caregivers of people with dementia.

    PubMed

    Van Mierlo, Lisa D; Meiland, Franka J M; Van der Roest, Henriëtte G; Dröes, Rose-Marie

    2012-01-01

    Insight into the characteristics of caregivers for whom psychosocial interventions are effective is important for care practice. Until now no systematic reviews were conducted into the effectiveness of psychosocial interventions for caregiver subgroups. To gain insight into this relationship between caregiver subgroups and intervention outcomes, a first review study was done. This study reviews the personal characteristics of caregivers of people with dementia for whom psychosocial interventions were effective. Electronic databases and key articles were searched for reviews on psychosocial interventions for caregivers studies published between January 1990 and February 2008. Based on these reviews, twenty-six studies met the inclusion criteria (i.e. having positive outcomes described in subgroups). Most positive effects were found in caregivers of people with a diagnosis of 'dementia not otherwise specified' and in the subgroup of female caregivers. Examples of outcomes were decreased depression and improved self-efficacy. This study gives a first overview of successful psychosocial interventions in subgroups of caregivers of people with dementia. It makes clear that until now, relatively little research has been done into subgroups of these caregivers. It also suggests that more research is needed to better understand which psychosocial interventions are effective for specific subgroups of caregivers of people with dementia. Copyright © 2011 John Wiley & Sons, Ltd.

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

    PubMed

    Simpson, Cherie; Carter, Patricia

    2015-06-01

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

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

    PubMed

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

    2017-01-25

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

  8. Why caregivers of people with dementia and memory loss don't use services.

    PubMed

    Brodaty, Henry; Thomson, Cathy; Thompson, Claire; Fine, Michael

    2005-06-01

    To develop a typography of the characteristics of caregivers of community dwelling people with dementia or memory loss who do not use services and empirically investigate the reasons for service non-use. The findings of a literature review were used to develop a typography of caregivers' non-use of services. This typography was applied to a sample of community-based caregivers. One in three caregivers were using no services and one in four only one service. Despite considerable proportions reporting low levels of life satisfaction and high levels of overload and resentment the main reasons caregivers gave for not using services were that they did not consider they needed the services. Other reasons for service non-use included care recipient reluctance to use services, lack of knowledge of services or being in the process of applying for services. Service availability or affordability were not identified as major impediments to service use. Presence of a physical disability and contact with a social worker were associated with service use. Caregivers of people with dementia incur significant strain and have substantial need for a variety of services. Nevertheless many caregivers were not using support services, mainly because of perceived lack of need or lack of awareness. Better public promotion of services, destigmatising dementia and encouraging referrals from health professionals could help overcome the barriers to service use. Copyright (c) 2005 John Wiley & Sons, Ltd

  9. 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

  10. Modeling the Distress of Spousal Caregivers of People with Dementia.

    PubMed

    Wawrziczny, Emilie; Berna, Guillaume; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

    2017-01-01

    The progressive mobilization of spouse caregivers who take care of a person with dementia (PWD) can lead to situations of distress. The current study sought to investigate the influence of the characteristics of the caregiving context on spousal caregiver distress. 125 spousal caregivers participated in this study. The characteristics of the caregiving context were assessed using questionnaires. We examined a moderated-mediator model (Step 1) in which we hypothesized that PWD and caregiver characteristics and dyadic determinants contribute to spousal caregiver distress. This model was compared based on the age at onset of the disease and the gender of the caregiver (Step 2). The model revealed that poor self-rated health and a lack of family support accentuated spousal caregiver distress, whereas the feeling of being prepared and level of confidence decreased spousal caregiver distress. Moreover, the quality of couple adjustment affected spousal caregiver distress, and this effect was mediated by the severity of the PWD's symptoms. Regarding the age at onset of the disease, the path between Couple Adjustment and the Care recipient's impairments was more important for caregivers of person with early-onset dementia (PEOD). Female caregivers who reported poor self-rated health experienced greater distress. It would be interesting to create a support program that would incorporate these three areas of intervention regarding the progression of the disease: first, "preparedness modules"; second, "dyadic modules" (especially for caregivers of PEOD); and third, "family modules". Specific attention should be given to female caregivers who report poor self-rated health.

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

    PubMed

    Zweig, Yael R; Galvin, James E

    2014-01-01

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

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

    PubMed

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

    2016-12-01

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

  13. Dementia Caregiver Burden: a Research Update and Critical Analysis.

    PubMed

    Cheng, Sheung-Tak

    2017-08-10

    This article provides an updated review of the determinants of caregiver burden and depression, with a focus on care demands and especially the differential effects of various neuropsychiatric symptoms or symptom clusters. Moreover, studies on caregivers for frontotemporal and Lewy body dementias were referred to in order to identify differences and similarities with the mainstream literature based largely on Alzheimer caregivers. As a group, neuropsychiatric symptoms are most predictive of caregiver burden and depression regardless of dementia diagnosis, but the effects appear to be driven primarily by disruptive behaviors (e.g., agitation, aggression, disinhibition), followed by delusions and mood disturbance. Disruptive behaviors are more disturbing partly because of the adverse impact on the emotional connection between the caregiver and the care-recipient and partly because they exacerbate difficulties in other domains (e.g., caring for activities of daily living). In behavioral variant frontotemporal dementia, not only are these disruptive behaviors more prominent but they are also more disturbing due to the care-recipient's insensitivity to others' feelings. In Lewy body dementia, visual hallucinations also appear to be distressing. The disturbing nature of disruptive behaviors cuts across dementia conditions, but the roles played by symptoms that are unique or particularly serious in a certain condition need to be explored further.

  14. Development of a burden scale for caregivers of dementia patients.

    PubMed

    Taemeeyapradit, Unchulee; Udomittipong, Dussadee; Assanangkornchai, Sawitri

    2014-04-01

    To develop a scale to measure the burden of care for caregivers of patients with dementia and explore its factor structure. The initial draft of the Thai dementia patients' caregiver burden (Thai-DCAB) scale was developed based on literature review, in-depth interviews and expert opinions. The drafted scale was administered to 203 caregivers of dementia patients treated at two large public hospitals in southern Thailand. An exploratory factor analysis using maximum likelihood extraction with varimax rotation was conducted. The reliability of the scale was assessed using Cronbach's alpha. The Thai-DCAB scale consisted of 18 questions. Three factors were obtained, covering psychological, physical and financial burdens of the caregivers in taking care of dementia patients. These three factors accounted for 67% of the variance. The Cronbach's alpha coefficient was 0.95. The Thai-DCAB scale has high internal consistency and captures key theoretical constructs of the perceived burden among caregivers of patients with chronic and deteriorating dementia and in accordance with the social and cultural contexts and the way of life of the Thai people. Copyright © 2013 Elsevier B.V. All rights reserved.

  15. 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…

  16. 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…

  17. Feasibility of central meditation and imagery therapy for dementia caregivers.

    PubMed

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

    2014-08-01

    Family dementia caregivers are at high risk of depression and burnout. We assessed 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 because of caregiving responsibilities. Twelve family dementia caregivers enrolled in CMIT-C. Primary outcomes included depression and anxiety, and secondary outcomes included insomnia, quality of life, and mindfulness. Changes over the study and 3 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. Ten participants completed the study. Completers came to an average of 7 ± 1 sessions out of a possible 8 sessions, and turned in home practice logs of 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 8 weeks, and endpoint satisfaction with CMIT-C. Central Meditation and Imagery Therapy for Caregivers 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. Copyright © 2014 John Wiley & Sons, Ltd.

  18. Healthcare use and cost in dementia caregivers: Longitudinal results from the Predictors Caregiver Study

    PubMed Central

    Zhu, Carolyn W.; Scarmeas, Nikolaos; Ornstein, Katherine; Albert, Marilyn; Brandt, Jason; Blacker, Deborah; Sano, Mary; Stern, Yaakov

    2014-01-01

    OBJECTIVE: To examine the effects of caregiver and patient characteristics on caregivers’ medical care use and cost. METHODS: 147 caregiver/patient dyads were followed annually for 6 years in 3 academic AD centers in the US. Logistic, negative binomial, and generalized linear mixed models were used to examine overall effects of caregiver/patient characteristics on caregivers’ hospitalizations, doctor visits, outpatient tests and procedures, and prescription and over-the-counter medications. RESULTS: Patients’ comorbid conditions and dependence were associated with increased healthcare use and costs of caregivers. Increases in caregiver depressive symptoms are associated with increases in multiple domains of caregivers’ healthcare use and costs. DISCUSSION: Findings suggest that we should expand our focus on dementia patients to include family caregivers to obtain a fuller picture of effects of caregiving. Primary care providers should integrate caregivers’ needs in healthcare planning and delivery. Clinical interventions that treat patients and caregivers as a whole will likely achieve the greatest beneficial effects. PMID:24637299

  19. The impact of anticipatory grief on caregiver burden in dementia caregivers.

    PubMed

    Holley, Caitlin K; Mast, Benjamin T

    2009-06-01

    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 examined the relationship between AG and caregiver burden. A total of 80 informal caregivers of individuals with dementia completed interviews and questionnaires assessing their experience of grief, physical and mental health, aspects of the caregiving situation, and the level of patient impairment. Hierarchical linear regression models were used to examine whether AG is significantly associated with caregiver burden. AG was shown to be significantly and independently associated with caregiver burden in this sample, beyond the effects of known predictors such as background characteristics, behavior problems in the care recipient, and depressive symptoms. The current results suggest that grief may be an important yet understudied aspect of the caregiving experience. It is likely that consideration of grief in future conceptualizations of caregiver burden can lead to better support for caregivers and more accurate predictions of outcomes.

  20. 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

  1. [Differential efficacy of two psychoeducational interventions for dementia family caregivers].

    PubMed

    Losada Baltar, A; Izal Fernández de Trocóniz, M; Montorio Cerrato, I; Márquez González, M; Pérez Rojo, G

    The aim of this work is to compare the effectiveness of two psychoeducational interventions for dementia caregivers: a cognitive behavioral one (PCC), aimed at the modification of dysfunctional thoughts about caregiving, and another one consisting in problem solving skills training (PSP) for caregivers, with the aim of modifying the behavioral problems of their relative. Seventy five caregivers were asked to participate in an intervention program, of whom 31 finally completed the study. Both group interventions are compared with a control group (CG). The caregiver groups were randomly assigned to each experimental condition. Pre, post intervention, and follow up assessments of the following variables have been made: depression, perceived stress, frequency of behavioral problems, perceived stress associated with the behavioral problems and dysfunctional thoughts about caregiving. Following the intervention, caregivers in the PCC program show significantly less perceived stress than the other two groups. In the same direction, a trend exists to a significant reduction of the stress associated with the behavioral problems. In the follow up assessment, caregivers of the PCC program significantly report less relative's behavioral problems than the other two groups. Caregivers of the PCC program have less dysfunctional thoughts than the other two groups, differences almost reaching significance. Benefits of a psychoeducational intervention vary as a function of the contents it includes. The importance of intervening on the caregiver dysfunctional thoughts for an adequate coping with caregiving is highlighted.

  2. Commitment to personal values and guilt feelings in dementia caregivers.

    PubMed

    Gallego-Alberto, Laura; Losada, Andrés; Márquez-González, María; Romero-Moreno, Rosa; Vara, Carlos

    2017-01-01

    Caregivers' commitment to personal values is linked to caregivers' well-being, although the effects of personal values on caregivers' guilt have not been explored to date. The goal of this study is to analyze the relationship between caregivers´ commitment to personal values and guilt feelings. Participants were 179 dementia family caregivers. Face-to-face interviews were carried out to describe sociodemographic variables and assess stressors, caregivers' commitment to personal values and guilt feelings. Commitment to values was conceptualized as two factors (commitment to own values and commitment to family values) and 12 specific individual values (e.g. education, family or caregiving role). Hierarchical regressions were performed controlling for sociodemographic variables and stressors, and introducing the two commitment factors (in a first regression) or the commitment to individual/specific values (in a second regression) as predictors of guilt. In terms of the commitment to values factors, the analyzed regression model explained 21% of the variance of guilt feelings. Only the factor commitment to family values contributed significantly to the model, explaining 7% of variance. With regard to the regression analyzing the contribution of specific values to caregivers' guilt, commitment to the caregiving role and with leisure contributed negatively and significantly to the explanation of caregivers' guilt. Commitment to work contributed positively to guilt feelings. The full model explained 30% of guilt feelings variance. The specific values explained 16% of the variance. Our findings suggest that commitment to personal values is a relevant variable to understand guilt feelings in caregivers.

  3. 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…

  4. 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…

  5. 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

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

    PubMed

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

    2016-04-01

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

  7. 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

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

    PubMed

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

    2016-01-01

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

  9. An evaluation of the CARES® Dementia Basics Program among caregivers.

    PubMed

    Pleasant, Michelle L; Molinari, Victor; Hobday, John V; Fazio, Sam; Cullen, Nancy; Hyer, Kathryn

    2017-01-01

    In 2014, the state of Oregon established Oregon Care Partners to provide high quality, free training to all dementia caregivers. This study evaluated participants' changes in knowledge, sense of competency in dementia caregiving, and ability to identify person-centered caregiving techniques after completing CARES® Dementia Basics online program, one of the educational resources available through this initiative. A convenience sample of informal and formal caregivers (N = 51) provided data at three points in time; pre-test, post-test, and a follow-up test after an additional 30-day period to determine sustained changes in knowledge, sense of competency, and person-centered care. From pre-test to post-test, modest improvements were detected in sense of competence in performing dementia care (ps < 0.01) and dementia-based knowledge, F(2, 150) = 7.71, p < 0.001, a multivariate effect size of w 2 = 0.09. Even though improvements in sense of competency were not universal, three out of five individual items demonstrated positive growth from pre-test to post-test as well as four out of the five items from pre-test to follow-up test. Importantly, gains observed in dementia-based knowledge from pre-test to post-test were largely maintained at the 30-day follow-up. No significant changes were found in the correct identification of person-centered techniques after the training F(5, 150) = 1.63, p = 0.19. Future research should investigate how best to maintain educational interventions within the caregiving environment and to assess subsequent skill change.

  10. Managing medications: the role of informal caregivers of older adults and people living with dementia. A review of the literature.

    PubMed

    Gillespie, Robyn; Mullan, Judy; Harrison, Lindsey

    2014-12-01

    To explore published literature that describes what is known about the role of informal caregivers as they manage medications for older adults and/or people living with dementia residing in the community. The number of informal caregivers of older adults, including people living with dementia, is growing worldwide. Good medication management by informal caregivers contributes to improved health outcomes and reduced institutionalisations for the care recipient; however, little is known about this domain of care. Narrative review. A literature search was conducted to identify relevant research articles written in English between January 2000-April 2013, sourced from online database searches using multiple keywords, reviewing reference lists and citations of key articles and Internet searches. Articles were included if they described informal caregiver medication management for older adults and/or people living with dementia. Ten articles were found that described this role from the perspective of the informal caregiver. The evidence suggests that this role is complex and is often made more difficult because of increasing medication regimen complexities, aspects of the relationship between the caregiver and the care recipient, healthcare system practices and a lack of information and/or training available to the informal caregiver, especially when caring for people living with dementia. Responsibility for managing medications for older adults and/or people living with dementia in the community often falls to informal caregivers. More information resources are required for this role, which requires specific medication management skills and knowledge and is further complicated by the cognitive decline of the care recipient. Informal caregivers are often expected to manage medications in a safe and effective manner for their older care recipient, who may also have cognitive impairment. Nurses, who may be in frequent contact with community-living older adults

  11. 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

  12. Clinical Assessment of Family Caregivers in Dementia.

    ERIC Educational Resources Information Center

    Rankin, Eric D.; And Others

    1992-01-01

    Evaluated development of integrated family assessment inventory based on Double ABCX and Circumplex models of family functioning and its clinical utility with 121 primary family caregivers from cognitive disorders program. Proposed model predicted significant proportion of variance associated with caregiver stress and strain. Several aspects of…

  13. 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…

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

    ERIC Educational Resources Information Center

    Haley, William E.

    1989-01-01

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

  15. Dementia-related restlessness: relationship to characteristics of persons with dementia and family caregivers.

    PubMed

    Regier, Natalie G; Gitlin, Laura N

    2017-03-23

    Dementia-related restlessness is commonly endorsed by caregivers but not well understood. This study examines differences in characteristics (demographics, cognitive status, physical function, pain, and mood) of persons with dementia whose caregivers endorse restlessness versus those who do not. We also examine the relationship of restlessness to caregiver well-being including burden, upset with behaviors, mastery, and depressive symptomatology. We combined baseline data from three caregiver intervention studies of community-dwelling persons with dementia who exhibited neuropsychiatric symptoms (n = 569) as measured by the Agitated Behaviors in Dementia Scale. We conducted bivariate correlations and independent t-tests by using the Agitated Behaviors in Dementia Scale restlessness item. Nearly 65% (n = 367) of dementia caregivers reported restlessness. There were no significant differences between those with and without (n = 202) reported restlessness concerning functional status (physical or cognitive). However, persons with restlessness had significantly higher pain scores (p < 0.01), were more likely to be on behavioral medications (p < 0.001), and had more neuropsychiatric symptoms as compared with persons without restlessness (M = 11.11, nonrestless; M = 6.61, restless) (p < 0.001). Caregivers of persons with dementia-related restlessness reported greater burden (p < 0.001), behavioral upset (p < 0.001), depression (p < 0.001), and lower mastery providing care (p < 0.01) compared with caregivers of persons without dementia-related restlessness. Restlessness is a common neuropsychiatric symptom that appears to be associated with poorer functioning in persons with dementia and greater distress in their caregivers. Further research is needed to understand the unique contributions of restlessness to care burden and quality of life of persons with dementia, as well as ways to address this distressing symptom. Copyright © 2017 John Wiley

  16. 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

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

    PubMed Central

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

    2008-01-01

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

  18. Effects of the Minnesota Adaptation of the NYU Caregiver Intervention on Depressive Symptoms and Quality of Life for Adult Child Caregivers of Persons with Dementia

    PubMed Central

    Gaugler, Joseph E.; Reese, Mark; Mittelman, Mary S.

    2015-01-01

    Purpose of the study This study determined whether the NYU Caregiver Intervention for Adult Children (the NYUCI-AC) significantly reduced depressive symptoms and improved quality of life for adult child caregivers of persons with dementia. Design and methods The NYUCI-AC was evaluated within a single blinded randomized controlled trial. The sample included 107 adult child caregivers of persons with dementia (n = 54 assigned to the multi-component treatment group; n = 53 assigned to a contact control group). Participants completed comprehensive assessments every four months during the first year and every six months thereafter for at least two years and up to 3.79 years. Results Individual growth curve models found that caregivers in the NYUCI-AC treatment condition indicated statistically significant (p < .05) curvilinear decreases in symptoms of depression indicating withdrawal, apathy, and lack of vigor and increases in perceptions of overall quality of life over a three-year period in comparison to control caregivers. Implications The NYUCI-AC offered adult child caregivers the capacity, via individual and family counseling as well as ongoing support, to enhance their quality of life and overcome their social withdrawal and apathy over time. These findings lend additional support to the NYUCI as an evidence-based approach to support family caregivers of persons with dementia. PMID:26238226

  19. Effects of the Minnesota Adaptation of the NYU Caregiver Intervention on Depressive Symptoms and Quality of Life for Adult Child Caregivers of Persons with Dementia.

    PubMed

    Gaugler, Joseph E; Reese, Mark; Mittelman, Mary S

    2015-11-01

    This study determined whether the NYU Caregiver Intervention for Adult Children (the NYUCI-AC) significantly reduced depressive symptoms and improved quality of life for adult child caregivers of persons with dementia. The NYUCI-AC was evaluated within a single-blinded randomized controlled trial. The sample included 107 adult child caregivers of persons with dementia (N = 54 assigned to the multi-component treatment group; N = 53 assigned to a contact control group). Participants completed comprehensive assessments every 4 months during the first year and every 6 months thereafter for at least 2 years and up to 3.79 years. Individual growth curve models found that caregivers in the NYUCI-AC treatment condition indicated statistically significant (p <0.05) curvilinear decreases in symptoms of depression indicating withdrawal, apathy, and lack of vigor and increases in perceptions of overall quality of life over a 3-year period in comparison to control caregivers. The NYUCI-AC offered adult child caregivers the capacity, via individual and family counseling as well as ongoing support, to enhance their quality of life and overcome their social withdrawal and apathy over time. These findings lend additional support to the NYUCI as an evidence-based approach to support family caregivers of persons with dementia. Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

  20. Do spouse caregivers of young and older persons with dementia have different needs? A comparative study.

    PubMed

    Wawrziczny, Emilie; Pasquier, Florence; Ducharme, Francine; Kergoat, Marie-Jeanne; Antoine, Pascal

    2017-09-01

    The aim of this study was to explore the needs of spouse caregivers of persons with dementia (PWD) and then to compare them based on the PWD's age at disease onset. This data could be used to adapt support programmes to address differences between the two groups. Thirty-eight spouse caregivers of persons with late-onset dementia and 40 spouse caregivers of persons with early-onset dementia (PEOD) agreed to participate in the study. The mean ± SD age of the PEOD was 57.6 ± 4.0 years, whereas it was 80.9 ± 5.3 years for the persons with late-onset dementia. Interviews were conducted in the spouse caregivers' homes with only the spouse caregiver. The semi-structured interviews were based on the French version of the Carers Outcome Agreement Tool. The interviews were analyzed in two steps. The first step was qualitative to identify needs. The data were thematically analyzed using QSR NVivo 10. The second step was quantitative to compare the needs depending on the PWD's age at onset. The comparison between the two groups was performed using the χ(2) test. The results demonstrated that the majority of needs are the same for the two groups of spouse caregivers. All caregivers need to unwind, to stimulate and pay attention to the PWD, to break the isolation, and to be more prepared and confident. However, some differences emerge, with the spouse caregivers of PEOD expressing a greater number of needs. The caregivers of PEOD seem to have a greater need to interact and maintain contacts with other people (P = 0.001), have more general care-related needs (P = 0.005), require more appropriate care structures (P = 0.037), and need greater assistance with administrative procedures (P = 0.004). To improve spouse caregivers' well-being and sense of efficiency, it would be interesting to develop a support programme with a common framework and specific modules depending on the PWD's age at disease onset. © 2017 Japanese Psychogeriatric Society.

  1. Balancing competing needs mediates the association of caregiving demand with caregiver role strain and depressive symptoms of dementia caregivers: A cross-sectional study.

    PubMed

    Liu, Hsin-Yun; Yang, Ching-Tzu; Wang, Yu-Nu; Hsu, Wen-Chuin; Huang, Tzu-Hsin; Lin, Yueh-E; Liu, Chin-Yi; Shyu, Yea-Ing L

    2017-08-17

    To examine the role of balancing competing needs in the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms). Caregivers who do not balance competing needs are more likely to experience negative caregiving outcomes, suggesting that balance mediates between caregiving demand and caregiving outcomes. Identifying a mediator of negative caregiving effects may help in developing tailored interventions for family caregivers of persons with dementia. A cross-sectional, correlational design. Data were collected from family caregivers' self-completed questionnaires between March 2013 - April 2014. A convenience sample of 120 family caregivers and care receivers with dementia was enrolled. We examined whether balance mediated the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms) by multiple regression analysis. To evaluate the significance of the indirect effect of caregiver balance, we used the Sobel test and Monte Carlo method, an alternative approach to testing mediation. Balancing competing needs completely mediated the association of caregiving demand with depressive symptoms and partially mediated the association of caregiving demand with role strain. Assessing caregivers' self-perceived sense of balance may help to identify caregivers at high risk for role strain and depressive symptoms. Interventions to enhance caregivers' perceived sense of balance between competing needs may provide a strategy for reducing the negative effects of caregiving. © 2017 John Wiley & Sons Ltd.

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

    PubMed

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

    2017-01-01

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

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

    PubMed Central

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

    2017-01-01

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

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

    PubMed Central

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

    2015-01-01

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

  5. A spiritually based caregiver intervention with telephone delivery for family caregivers of veterans with dementia.

    PubMed

    Bormann, Jill; Warren, Kathleen A; Regalbuto, Laura; Glaser, Dale; Kelly, Ann; Schnack, Judy; Hinton, Lakemba

    2009-01-01

    Caring for veterans with dementia is burdensome for family caregivers. This exploratory study tested the efficacy of an innovative, spiritually based mantram caregiver intervention delivered using teleconference calls. A prospective, within-subjects, mixed-methods, and 3-time repeated-measures design with 36-week follow-up telephone interviews was conducted. Sixteen caregivers (94% women, 94% Whites with mean age 69.2 years, SD = 10.35 years) completed the intervention. Significant effects for time and linear terms were found for decreasing caregiver burden, perceived stress, depression, and rumination and for increasing quality of life enjoyment and satisfaction, all with large effect sizes. Findings suggest that teleconference delivery of a spiritually based caregiver intervention is feasible.

  6. 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…

  7. 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…

  8. Families Who Care: Assisting African American and Rural Caregivers Dealing with Dementia. A Training Manual.

    ERIC Educational Resources Information Center

    Coogle, Constance L., Ed.; Finley, Ruth B., Ed.

    Although this training manual was developed as a tool for trainers of African American and rural family caregivers of elders with dementia, it can easily be adapted for trainers of caregivers (both formal and informal) of persons other than those with dementia. The first section educates potential trainers about dementia, rural issues, ethnic…

  9. 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…

  10. Telephone interventions for family caregivers of patients with dementia: what are best nursing practices?

    PubMed

    Mason, Bernadette J; Harrison, Barbara E

    2008-01-01

    Family caregivers of patients with dementia experience caregiver burden and need holistic nursing interventions, such as telephone support. This article reviews the literature on telephone support interventions for family caregivers of patients with dementia and describes evidence-based holistic nursing practices within Watson's theory of human caring, which focuses on transpersonal caring relationships.

  11. Increasing the Use of Formal Services by Caregivers of People with Dementia

    ERIC Educational Resources Information Center

    McCallion, Philip; Toseland, Ronald W.; Gerber, Todd; Banks, Steven

    2004-01-01

    This study evaluated the impact of an information and referral intervention designed to help family caregivers of people with dementia obtain needed health and human services. Caregivers (N = 608) of community-residing people with dementia were surveyed about their need for and use of community services. Of the 608 caregivers, 203 agreed to be…

  12. 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…

  13. Teaching Caregivers of Persons with Dementia to Address Pain.

    PubMed

    Kunik, Mark E; Snow, A Lynn; Wilson, Nancy; Amspoker, Amber B; Sansgiry, Shubhada; Morgan, Robert O; Ying, Jun; Hersch, Gayle; Stanley, Melinda A

    2017-02-01

    To compare the efficacy of Preventing Aggression in Veterans with Dementia (PAVeD) with that of usual care in decreasing incidence of aggression (primary outcome) and pain and improving depression, pleasant events, caregiver burden, and patient-caregiver relationship quality (secondary outcomes). Randomized controlled trial with assessments at baseline and 3, 6, 9, and 12 months SETTING: Houston, TX. A total of 203 community-dwelling veterans with pain and dementia and their caregivers. PAVeD, 6 to 8 weekly sessions of 45-minute home visits with masters-level clinicians providing instruction to caregivers on recognizing pain, enhancing communication, and making daily activities pleasant and enjoyable, and at least two elective sessions. Cohen-Mansfield Agitation Inventory (primary outcome), Philadelphia Geriatric Pain Intensity Scale, Geriatric Depression Scale, Pleasant Events Schedule-AD, Burden Interview, Mutuality Scale (secondary outcomes), Client Satisfaction Questionnaire. There were no significant differences in aggression incidence between intervention and control groups, although the PAVeD group had significantly better mutuality than controls. PAVeD may need to address a broader range and more in-depth coverage of aggression risk factors with person-centered tailoring to target certain types of distress. Interventions to prevent aggression may also need to address medical providers in addition to caregivers. Published by Elsevier Inc.

  14. Positive appraisal of in-home family caregivers of dementia patients as an influence on the continuation of caregiving.

    PubMed

    Kajiwara, Kohei; Nakatani, Hisae; Ono, Mitsu; Miyakoshi, Yukiko

    2015-03-01

    We attempted to determine the factors that influence the continuation of in-home caregiving for patients with dementia. The participants were family caregivers of dementia patients who received home care services. Data were collected via a questionnaire completed by caregivers and then returned in the mail. Of the 705 caregivers who received the questionnaire, 405 completed and returned it (response rate: 57.4%). The average age of the caregivers was 63.9 ± 11.5 years, and they had been providing care for an average of 5.1 ± 4.1 years. The average age of the patients was 84.7 ± 7.4 years. We analyzed the path model. Caregivers' current feelings about continuing caregiving were directly affected by a positive appraisal of caregiving (β = 0.20, P < 0.001) and by the burden they experienced (β = -0.39, P < 0.001). The continuation of caregiving of patients with worsening symptoms was directly affected by a positive appraisal of caregiving (β = 0.15, P < 0.01) and by the burden experienced by the caregivers (β = -0.46, P < 0.001). The continuation of caregiving was indirectly affected by the patients' cognitive impairment and by the behavioral and psychological symptoms of dementia score. The continuation of in-home caregiving among caregivers of patients with dementia was affected by both positive appraisal and caregiver burden. In addition, the present study revealed that behavioral and psychological symptoms of dementia score indirectly affects the continuation of caregiving by directly affecting caregiver burden. © 2014 The Authors. Psychogeriatrics © 2014 Japanese Psychogeriatric Society.

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

    PubMed

    Lee, Youjung; Choi, Sunha

    2013-06-01

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

  16. Indicators of perceived useful dementia care assistive technology: Caregivers' perspectives.

    PubMed

    Mao, Hui-Fen; Chang, Ling-Hui; Yao, Grace; Chen, Wan-Yin; Huang, Wen-Ni Wennie

    2015-08-01

    The study aims to investigate the caregivers' context-specific perceived usefulness of available assistive technology (AT) devices and the professionals' perspectives on the usefulness indicators of AT devices for home-dwelling individuals with mild-to-moderate dementia. A total of 72 caregivers completed a questionnaire rating 82 AT devices with a high-perceived usefulness (HPU) or low-perceived usefulness (LPU). A total of 21 experts rated 10 usefulness indicators of these devices. We compared the mean of each indicator between the HPU and LPU groups. Most caregivers, who are generally amenable to using AT devices, thought they were useful for helping to care for home-dwelling older adults with mild-to-moderate dementia. The level of perceived usefulness from the experts' perspectives depends on specific design indicators (e.g. familiarity) and the context in which the AT is used (e.g. in everyday life or in emergencies). Indicators for HPU devices were: allows selective accident prevention, has an intuitive interface, is familiar, offers ease of use and simplifies activities. LPU devices featured client prompting. There were no significant differences between HPU and LPU devices with indicators of: is automated, informs caregiver, preserves privacy and preserves autonomy. Safety issues were considered important, and sometimes overshadowed ethical dilemmas, such as privacy and autonomy concern. The present study provides insight into how caregivers perceived the usefulness of AT devices, and how that varied with context. Indicators of devices perceived as useful can serve as guidelines for modifying existing devices and designing new devices. Future application could also incorporate the points of view from the persons with dementia. © 2014 Japan Geriatrics Society.

  17. The moderating effect of religiosity on caregiving burden and depressive symptoms in caregivers of patients with dementia.

    PubMed

    Yoon, Kyung Hee; Moon, Yoo Sun; Lee, Yunhwan; Choi, Seong Hye; Moon, So Young; Seo, Sang Won; Park, Kyung Won; Ku, Bon D; Han, Hyun Jeong; Park, Kee Hyung; Han, Seol-Heui; Kim, Eun-Joo; Lee, Jae-Hong; Park, Sun A; Shim, Yong S; Kim, Jong Hun; Hong, Chang Hyung; Na, Duk L; Ye, Byoung Seok; Kim, Hee Jin; Moon, Yeonsil; Lee, Sang Soo; Kim, Do Hoon

    2016-09-23

    This study explored whether religiosity/spirituality has a protective role against negative caregiving outcomes, in a large multicenter nationwide sample of caregivers of patients with dementia in South Korea. Additionally, this study was the first to examine whether religiosity/spirituality could affect caregiving outcomes according to the various religious affiliations of caregivers. The study was conducted on a sample of 476 caregivers of patients with dementia participated in the Clinical Research Center for Dementia of South Korea (CREDOS). We examined the moderating effect of each of the three dimensions of religiosity/spirituality (organizational religious activity, ORA; non-organizational religious activity, NORA; intrinsic religiosity, IR) on the relationship between activities of daily living (ADL) of patients with dementia and caregiving burden and depressive symptoms of caregivers, using a series of hierarchical regression analyses. In addition, these analyses were conducted according to the religious affiliations of the caregivers. ORA, NORA, and IR of religiosity/spirituality alleviated the effect of ADL of patients on caregiving burden. ORA and IR moderated the relationship between ADL of patients and depressive symptoms of caregivers. These moderating effects of religiosity on caregiving outcomes were different according to various religious groups. We have identified religiosity/spirituality as a protective factor for caregivers of patients with dementia. The sub-dimensions of religiosity as moderators were different by religious affiliations of caregivers. Further studies are needed to investigate the specific religiosity-related factors which could positively impact the mental health of the caregivers of patients with dementia by religions.

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

    PubMed

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

    2015-09-01

    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. We recruited 139 Hispanic family caregivers. We collected data on sociodemographic characteristics and predictors of caregiver burden, measured with the Zarit Caregiver Burden Scale, and depressive symptoms, measured with the Geriatric Depression Scale. The mean age was 59.3 ± 10.4 years. The majority of caregivers were daughters and earned less than US$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. Caregiver comorbidities and satisfaction with social support may be targets for intervention that could improve caregiver burden and depressive symptoms among Hispanic caregivers. © The Author(s) 2015.

  19. Needs of caregivers of the patients with dementia.

    PubMed

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

    2010-01-01

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

  20. [Characteristics and factors associated with dementia caregivers burden].

    PubMed

    Delgado Parada, Eduardo; Suárez Alvarez, Óscar; de Dios del Valle, Ricardo; Valdespino Páez, Ineyvis; Sousa Ávila, Yolanda; Braña Fernández, Gerardo

    2014-03-01

    To describe the characteristics and determining factors of carer stress in a group of elderly home care patients with dementia evaluated in a Geriatric Assessment Unit. An observational descriptive cross-sectional study was conducted using an assessment of baseline characteristics of patients and carers. Estimation of caregiver burden was registered by validated scales: Goldberg Anxiety Scale (GAS), Goldberg Depression Scales (GDS), and Zarit Burden Scale (ZS). A total of 130 patients were included. No item related to dementia patients was associated with caregiver burden. A poor perception of health and quality of life by the caregivers were associated with anxiety risk, depression and burden. Attendance rates for primary care and lack of paid work outside the home were associated with both, depression (GDS>2) and anxiety (GAS>4). Carer age and a lower education were related to depression. Anti-inflammatory, anxiolytics and antidepressants consumption was associated with anxiety, and anti-inflammatory consumption with caregiver burden (ZS >47). The profile of carers in our sample is comparable to that described in other national studies, but care time is longer. The target population is difficult to identify and in need of help. Although there is not a formal demand for help, we should be encouraged to develop new healthcare methods. Copyright © 2013 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España. All rights reserved.

  1. A meta-review of stress, coping and interventions in dementia and dementia caregiving.

    PubMed

    Gilhooly, K J; Gilhooly, M L M; Sullivan, M P; McIntyre, A; Wilson, L; Harding, E; Woodbridge, R; Crutch, S

    2016-05-18

    There has been a substantial number of systematic reviews of stress, coping and interventions for people with dementia and their caregivers. This paper provides a meta-review of this literature 1988-2014. A meta-review was carried out of systematic reviews of stress, coping and interventions for people with dementia and their caregivers, using SCOPUS, Google Scholar and CINAHL Plus databases and manual searches. The meta-review identified 45 systematic reviews, of which 15 were meta-analyses. Thirty one reviews addressed the effects of interventions and 14 addressed the results of correlational studies of factors associated with stress and coping. Of the 31 systematic reviews dealing with intervention studies, 22 focused on caregivers, 6 focused on people with dementia and 3 addressed both groups. Overall, benefits in terms of psychological measures of mental health and depression were generally found for the use of problem focused coping strategies and acceptance and social-emotional support coping strategies. Poor outcomes were associated with wishful thinking, denial, and avoidance coping strategies. The interventions addressed in the systematic reviews were extremely varied and encompassed Psychosocial, Psychoeducational, Technical, Therapy, Support Groups and Multicomponent interventions. Specific outcome measures used in the primary sources covered by the systematic reviews were also extremely varied but could be grouped into three dimensions, viz., a broad dimension of "Psychological Well-Being v. Psychological Morbidity" and two narrower dimensions of "Knowledge and Coping" and of "Institutionalisation Delay". This meta-review supports the conclusion that being a caregiver for people with dementia is associated with psychological stress and physical ill-health. Benefits in terms of mental health and depression were generally found for caregiver coping strategies involving problem focus, acceptance and social-emotional support. Negative outcomes for

  2. Correlation between depression and burden observed in informal caregivers of people suffering from dementia with time spent on caregiving and dementia severity.

    PubMed

    Bednarek, A; Mojs, E; Krawczyk-Wasielewska, A; Głodowska, K; Samborski, W; Lisiński, P; Kopczyński, P; Gregersen, R; Millán-Calenti, J C

    2016-01-01

    The aim of the study is to compare data on the examined population of informal caregivers of people suffering from dementia with previous studies, as well as to assess the correlation between (i) depression determined on the basis of the Center for Epidemiologic Studies Depression Scale and (ii) caregiver burden measured by means of the Zarit Caregiver Burden Scale and some chosen parameters, such as total time devoted to caregiving, time of caregiving in hours per week and level of dementia severity measured by Global Deterioration Scale. 41 informal caregivers of people suffering from dementia from different backgrounds were evaluated using the Zarit Caregiver Burden Scale and the Center for Epidemiologic Studies Depression Scale. Demographic data about the time devoted to caregiving and the number of hours spend on caregiving weekly were gathered. The type of dementia and its stage were registered using the Global Deterioration Scale (GDS). With the aid of the Statistica StatSoft program, mutual correlations between the parameters were measured. The study was conducted within the framework of AAL UnderstAID--a platform that supports and helps to understand and assist caregivers in the care of a relative with dementia. The international project is co-founded by the Joint Programme Ambient Assisted Living (Grant code: ESR-aal 2012 5 107). No significant correlations between the level of depression severity evaluated in caregivers and the total time of taking care of a demented person or time of caregiving in hours per week were observed. Similarly, no significant correlation between depression severity level and dementia severity level measured on the GDS scale were noted. There was also no significant correlation between Zarit Caregiver Burden Scale scores and the above-mentioned parameters. The level of depression among caregivers do not depend on socio-demographic factors.

  3. The CUIDEME Study: determinants of burden in chilean primary caregivers of patients with dementia.

    PubMed

    Slachevsky, Andrea; Budinich, Marilu; Miranda-Castillo, Claudia; Núñez-Huasaf, Javier; Silva, Jaime R; Muñoz-Neira, Carlos; Gloger, Sergio; Jimenez, Oscar; Martorell, Bernardo; Delgado, Carolina

    2013-01-01

    Caring for a person with dementia is associated with well-documented increases in burden and distress and decreases in mental health and wellbeing. Studies assessing burden in caregivers of patients with dementia and its determinants are scarce in Latin America. The main objective of this study was to assess the extent and the determinants of burden in informal primary caregivers of patients with dementia in Chile. A descriptive study was conducted using clinically validated scales to assess dementia characteristics and to measure caregiver variables. Family socio-demographic characteristics and functional status, patient functional dependency and behavioral disturbances, and caregiver psychiatric morbidity were analyzed as independent variables to determine caregiver burden. Two hundred and ninety-two informal caregivers were included. There were more female (80%) than male caregivers, consisting mainly of daughters and spouses of the patients. Severe burden was reported in 63% of the caregivers, and 47% exhibited psychiatric morbidity. Burden was associated with caregiver psychiatric distress, family dysfunction, severity of neuropsychiatric symptoms and functional disability, but neither patient age, gender, nor socioeconomic status impacted burden. Our results underscore the importance of assessing the consequences of dementia in both caregivers and patients in order to evaluate the real biopsychosocial impact of dementia, as well as the importance of planning appropriate and effective public health interventions in Latin American countries. In addition, interventions targeting caregiver psychological distress, caregiver familial dysfunction, patient neuropsychiatric disorders, and patient functional disability could potentially diminish caregiver burden.

  4. Mechanisms of action of a psychological intervention for dementia caregivers: effects of behavioral activation and modification of dysfunctional thoughts.

    PubMed

    Losada, Andrés; Márquez-González, María; Romero-Moreno, Rosa

    2011-11-01

    Different studies show the negative effects on caregivers' health of maladaptive thoughts and the positive effects of engaging in pleasurable activities on distress. The aim of this study is to (a) test the efficacy of a cognitive-behavioral intervention aimed at training caregivers to flexibilize maladaptive thoughts regarding caregiving and increasing their leisure activities and to (b) analyse the mediator role in the effects of the intervention of caregivers' change in dysfunctional thoughts and behavioral activation. A total of 170 caregivers were contacted and randomly distributed to the intervention condition or to the control group. Depression, behavioral activation, and dysfunctional thoughts were assessed at baseline and post-intervention by 'blinded' interviewers. The intervention consisted in twelve group based sessions in which in addition to cognitive-behavioral techniques, caregivers' were trained in basic principles for caring for a relative with dementia. Significant intervention by time effects were found for depression, dysfunctional thoughts and frequency of leisure activities. Only significant positive effects were found for the intervention group. The regression analysis for testing mediational effects of dysfunctional thoughts and leisure activities on the relationship between participating on the intervention and changes in depressive symptomatology show that mediation is established in both cases. The results of our study contribute to the literature on interventions for dementia caregivers highlighting the positive mediator effect that modifying caregivers' dysfunctional thoughts and increasing their behavioral activation has on caregivers' depressive symptomatology. Copyright © 2010 John Wiley & Sons, Ltd.

  5. Grief in caregivers of persons with Alzheimer's disease and related dementia: a qualitative synthesis.

    PubMed

    Large, Samantha; Slinger, Richard

    2015-03-01

    This article provides a meta-synthesis of studies focusing on grief in caregivers of people with Alzheimer's disease or related dementia. Through a systematic search, 11 articles met the inclusion criteria that care receivers had a diagnosis of Alzheimer's disease or related dementia, caregivers were informal caregivers, and the study focused on caregiver grief. The meta-synthesis followed a meta-ethnography approach based on reciprocal translation. Six themes were identified, namely challenges of caregiving, losses and changes in the relationship, the role of dementia in grief, striving despite dementia, utilising social support and death as a relief from caregiving. Themes are discussed within an integrated framework showing the connected relationships between themes. The devised framework of themes illustrates the general experience of caregiver grief and can be used to devise specific, targeted interventions to help caregivers to identify and work through their grief. © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

  6. Unmet Needs of Caregivers of Patients Referred to a Dementia Care Program

    PubMed Central

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

    2014-01-01

    Background/Objectives Caregiver strain and low self-efficacy for managing dementia-related problems are common among those caring for patients with dementia, but the level of unmet need and relation to provider type has not been well characterized. Design Cross-sectional observational cohort Setting Urban academic medical center Participants Caregivers of community-dwelling adults with dementia referred to the program Measurements Caregivers were surveyed and completed the Patient Health Questionnaire (PHQ-9) about themselves, the Modified Caregiver Strain Index, the Neuropsychiatric Inventory Questionnaire, which measures patient symptom severity and related caregiver distress, and a 9-item caregiver self-efficacy scale developed for the study. Results Of 307 patient and caregiver dyads surveyed over a one year period, 32% of caregivers reported confidence in managing dementia-related problems, 19% knew how to access community services to help provide care, and 28% agreed the patient’s provider helped them work through dementia care problems. Thirty-eight percent reported high levels of caregiver strain, and 15% reported moderate to severe depressive symptoms. Caregivers of patients referred by geriatricians more often reported having a healthcare professional to help work through dementia care problems than those referred by internists, family physicians, or other specialists, but self-efficacy did not differ. Low caregiver self-efficacy was associated with higher caregiver strain, more caregiver depressive symptoms, and caring for a patient with more severe behavioral symptoms. Conclusion Most caregivers perceived inadequate support from the patient’s provider in managing dementia-related problems, reported strain, and had low confidence in managing caregiving. New models of care are needed to address the complex care needs of patients with dementia and their caregivers. PMID:25688604

  7. Effectiveness of coping strategies intervention on caregiver burden among caregivers of elderly patients with dementia.

    PubMed

    Chen, Hui-Mei; Huang, Mei-Feng; Yeh, Yi-Chun; Huang, Wen-Hui; Chen, Cheng-Sheng

    2015-03-01

    Coping strategies are a potential way to improve interventions designed to manage the caregiver burden of dementia. The purpose of this study was to develop an intervention targeted towards improving coping strategies and to examine its effectiveness on reducing caregiver burden. A controlled study design was used. Fifty-seven caregivers of dementia patients were enrolled. Coping strategies were assessed with the Revised Ways of Coping Checklist (WCCL-R) and caregiver burden was assessed with the Chinese version of the Caregiver Burden Inventory. The participants were randomly divided into two groups. The intervention group was offered a series of five interventions in which problem-solving skills, knowledge of dementia, social resources, and emotional support were taught every 2 weeks, and the control group was telephoned every 2 weeks for the usual clinical management. Two weeks after the end of the intervention, we again administered the WCCL-R and the Caregiver Burden Inventory. Two-way repeated-measure anova was used to evaluate the changes in coping strategies and caregiver burden. Forty-six participants completed the study. No statistically significant differences were noted in the demographic data between the two groups. On the problem-focused coping subscale on the WCCL-R, the intervention group's mean score increased by 3.8 points, and the control group's decreased by 5.1 points (F = 7.988, P = 0.007). On the seeking social support coping subscale on the WCCL-R, the intervention group's mean score increased by 3.8 points, and the control group's decreased by 3.1 points (F = 4.462, P = 0.04). On the Caregiver Burden Inventory, the intervention group's mean score decreased by 7.2 points, and the control group's increased by 2.2 points (F = 6.155, P = 0.017). Psychosocial intervention can help caregivers to adopt more problem-focused and social support coping strategies, which are beneficial in terms of reducing the caregiver

  8. 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. Copyright © 2013 Elsevier Ltd. All rights reserved.

  9. Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability.

    PubMed

    Riffin, Catherine; Van Ness, Peter H; Wolff, Jennifer L; Fried, Terri

    2017-08-01

    To estimate the number of caregivers providing assistance to community-dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health-related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Nationally representative surveys of caregivers and older adults in the United States. 2011 National Health and Aging Trends Study and National Study of Caregiving. Community-dwelling older adults and their family caregivers, who were selected on the basis of having assisted with mobility, self-care, household activities, transportation, or medical tasks. Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation. Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living-related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance. Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health-related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers

  10. 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.

  11. The roles of unmet needs and formal support in the caregiving satisfaction and caregiving burden of family caregivers for persons with dementia.

    PubMed

    Park, Myonghwa; Choi, Sora; Lee, Song Ja; Kim, Seon Hwa; Kim, Jinha; Go, Younghye; Lee, Dong Young

    2017-09-28

    A growing number of studies are emphasizing the importance of positive and negative appraisals of caregiving and the utilization of social resources to buffer the negative effects of caring for persons with dementia. By assessing the roles of unmet needs and formal support, this study tested a hypothesized model for Korean family caregivers' satisfaction and burden in providing care for persons with dementia. The stress process model and a two-factor model were used as the conceptual framework for this study. Data for 320 family caregivers from a large cross-sectional survey, the Seoul Dementia Management study, were analyzed using structural equation modeling. In the hypothesized model, the exogenous variables were patient symptoms, including cognitive impairment, behavioral problems, and dependency on others to help with activities of daily living and with instrumental activities of daily living. The endogenous variables were the caregiver's perception of the unmet needs of the patient, formal support, caregiving satisfaction, and caregiving burden. The adjusted model explained the mediating effect of unmet needs on the relationship between patient symptoms or formal support and caregiving satisfaction. Formal support also had a mediating effect on the relationship between patient symptoms and unmet needs. Patient symptoms and caregiving satisfaction had a significant direct effect on caregiving burden. The level of unmet needs of persons with dementia and their family caregivers must be considered in the development of support programs focused on improving caregiving satisfaction.

  12. 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…

  13. 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…

  14. 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)…

  15. 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…

  16. 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…

  17. 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…

  18. 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…

  19. 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)…

  20. [Rumination and cognitive fusion in dementia family caregivers].

    PubMed

    Romero-Moreno, Rosa; Márquez-González, María; Losada, Andrés; Fernández-Fernández, Virginia; Nogales-González, Celia

    2015-01-01

    Rumination has been described as a dysfunctional coping strategy related to emotional distress. Recently, it has been highlighted from the Acceptance and Commitment Therapy therapeutic approach, the negative role that cognitive fusion (the extent to which we are psychologically tangled with and dominated by the form or content of our thoughts) has on the explanation of distress. The aim of this study is to simultaneously analyze the role of rumination and cognitive fusion in the caregiving stress process. The sample of 176 dementia caregivers was divided in four groups, taking into account their levels of rumination and cognitive fusion: HRHF=high rumination+high cognitive fusion; HRLF=high rumination+low cognitive fusion; LRHF= low rumination+high cognitive fusion; and LRLC=low rumination and low cognitive fusion. Caregiver stress factors, frequency of pleasant events, experiential avoidance, coherence and satisfaction with personal values, depression, anxiety and satisfaction with life, were measured. The HRHF group showed higher levels of depression, anxiety, experiential avoidance and lower levels of satisfaction with life, frequency of pleasant events, coherence and satisfaction with personal values, than the other three groups. Considering simultaneously rumination and cognitive fusion may contribute to a better understanding of caregiver coping and distress. Copyright © 2014 SEGG. Published by Elsevier Espana. All rights reserved.

  1. 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. © The Author(s) 2015.

  2. Caregivers of patients with dementia in Chinese mainland: a retrospective analysis.

    PubMed

    Liu, Jia; Wang, Lu-Ning

    2013-11-01

    We aimed to systematically search and summary the publications from 1990 to 2012 on Chinese dementia caregivers to understand the development in this field. We searched Pubmed and Chinese medical databases for all the original publications on the dementia caregivers in Chinese mainland until December 31st, 2012. 126 papers involved 117 studies with 11178 participants were analyzed. The earliest study on Chinese caregivers with dementia patients was published in 1990. Most studies (92%) were reported in Chinese. 85% of studies were published between 2006 and 2012, while 42% were carried out in the most developed regions. In spite of the late start, the number of publications on Chinese dementia caregivers has rapidly increased since 2006. However, the quality of studies is still need to improve in sample size, intervention and outcome design. More attentions, policies and funds should be given to support the future study in dementia caregivers.

  3. Effect of home-based light treatment on persons with dementia and their caregivers

    PubMed Central

    Sloane, PD; Figueiro, M; Garg, S; Cohen, LW; Reed, D; Williams, CS; Preisser, J; Zimmerman, S

    2015-01-01

    Sleep disorders are problematic for persons with dementia and their family caregivers. This randomized controlled trial with crossover evaluated the effects of an innovative blue-white light therapy on 17 pairs of home-dwelling persons with dementia and their caregivers. Subjects with dementia received blue-white light and control (‘red-yellow’ light) for six weeks separated by a four-week washout. Neither actigraphic nor most self-reported sleep measures significantly differed for subjects with dementia. For caregivers, both sleep and role strain improved. No evidence of retinal light toxicity was observed. Six weeks of modest doses of blue-white light appear to improve sleep in caregivers but not in persons with dementia. Greater or prolonged circadian stimulation may be needed to determine if light is an effective treatment for persons with dementia. PMID:26273229

  4. Family functioning in the caregivers of patients with dementia: one-year follow-up.

    PubMed

    Heru, Alison M; Ryan, Christine E

    2006-01-01

    Caregivers for relatives with dementia can maintain their quality of life without specific intervention. It is unclear which variables are protective and which variables are aggravating for the caregiver. To assess the impact of family functioning on caregiver burden over time, the authors had caregivers of out patients with dementia complete self-report questionnaires at recruitment and at 1 year. At recruitment, 63% of caregivers were female, with a mean age of 62 years. Mean patient age was 73 years. The average number of caregiving years was 3.1. Caregivers were more likely to be spouses (61%). After 1-year, caregivers who stayed in the study reported no change in burden, reward, quality of life, or overall family functioning, although the patient's activities of daily living and level of disability were perceived to have significantly deteriorated. Caregivers who reported poor family functioning at initial assessment had higher ratings of strain and burden.

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

    PubMed

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

    2011-01-01

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

  6. 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…

  7. 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…

  8. 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…

  9. 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,…

  10. 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…

  11. 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…

  12. Characteristics of the spouse caregiving experience: Comparison between early- and late-onset dementia.

    PubMed

    Wawrziczny, Emilie; Berna, Guillaume; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

    2017-06-20

    To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programs. Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. We compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. The results suggest that programs should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.

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

    PubMed Central

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

    2012-01-01

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

  15. 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

  16. Knowledge management in dementia care networks: a qualitative analysis of successful information and support strategies for people with dementia living at home and their family caregivers.

    PubMed

    Heinrich, S; Laporte Uribe, F; Roes, M; Hoffmann, W; Thyrian, J R; Wolf-Ostermann, K; Holle, B

    2016-02-01

    Stakeholders involved in community dementia support services often work on their own and without coordination with other services. These circumstances can result in a lack of information and support for people with dementia and their family caregivers at home. To increase the coordination between existing support services, so-called 'Dementia Care Networks' (DCNs) have been established. Most of the tasks that are performed in DCNs are based on communication strategies. Therefore, knowledge management (KM) is a key process in these networks. However, few studies have focused on this topic. This study attempted to evaluate KM strategies in DCNs across Germany as part of the DemNet-D study. A qualitative interview study design was used. Qualitative data were collected during single and group interviews with key persons associated with thirteen DCNs. Interviews were audiotaped and transcribed, and a structured content analysis was conducted. The framework for the analysis was derived from a KM model. Information dissemination strategies for people with dementia and their informal caregivers based on actively established contacts appear to be more successful than passive strategies. General practitioners often play a key role as external gatekeepers in initiating contact between a network and a person affected by dementia. In this context, case managers can help integrate external stakeholders, such as general practitioners or pharmacists, into DCNs using different KM strategies. The systematic development of common objectives under an agency-neutral leadership seems to be an important aspect of successful KM within DCNs. The findings reported here can help DCNs optimize their KM strategies for generating tailored information and support services for people with dementia living at home and their family caregivers. In particular, the identified potential knowledge distribution barriers and facilitators will be of practical use to DCN stakeholders. Copyright © 2015 The

  17. The Challenges of Developing a Participatory Arts Intervention for Caregivers of Persons with Dementia

    PubMed Central

    Gammonley, Denise; Hanna Powell, Gay; Wan, Thomas T

    2017-01-01

    Objective: We describe the development and challenges in implementing a web-based participatory art intervention specifically designed for caregivers of persons with dementia to use at home with their loved one.   Method: An interprofessional team, including an experienced national panel of artists, developed a participatory arts toolkit consisting of seven web-based modules involving a combination of music, singing, dancing, poetry, and painting. Participants completed a survey of demographics, caregiver needs, and caregiver burden.  Results: Thirty caregivers with high caregiver needs and a high caregiver burden volunteered to pilot the intervention. Difficulties with caregiver recruitment and compliance with lesson plans were noted. Caregivers provided positive and negative qualitative feedback.   Discussion: The challenges and possible solutions to the problems identified in the implementation and assessment of this participatory arts intervention will provide important insights for future studies linking the arts and dementia care.    PMID:28503390

  18. The Challenges of Developing a Participatory Arts Intervention for Caregivers of Persons with Dementia.

    PubMed

    Golden, Adam; Gammonley, Denise; Hanna Powell, Gay; Wan, Thomas T

    2017-04-11

    We describe the development and challenges in implementing a web-based participatory art intervention specifically designed for caregivers of persons with dementia to use at home with their loved one.   Method: An interprofessional team, including an experienced national panel of artists, developed a participatory arts toolkit consisting of seven web-based modules involving a combination of music, singing, dancing, poetry, and painting. Participants completed a survey of demographics, caregiver needs, and caregiver burden.  Results: Thirty caregivers with high caregiver needs and a high caregiver burden volunteered to pilot the intervention. Difficulties with caregiver recruitment and compliance with lesson plans were noted. Caregivers provided positive and negative qualitative feedback.   Discussion: The challenges and possible solutions to the problems identified in the implementation and assessment of this participatory arts intervention will provide important insights for future studies linking the arts and dementia care.

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

    PubMed

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

    2007-02-01

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

  20. Resistiveness to Care as Experienced by Family Caregivers Providing Care for Someone With Dementia.

    PubMed

    Spigelmyer, Pamela C; Hupcey, Judith E; Smith, Carol A; Loeb, Susan J; Kitko, Lisa

    2017-09-15

    This research explored family caregivers' lived experiences of resistiveness to care when they provided care for people with dementia. The goal was to identify a general meaning of family caregivers' lived experiences to target potential areas for future nursing interventions to help family caregivers manage their caregiving role and provide a base for future research surrounding resistiveness to care. Descriptive phenomenology was used to provide descriptions of eight family caregivers who provided care for someone with dementia and experienced resistiveness to care. Family caregivers were recruited from Alzheimer's support groups from June to November 2014. Caregiver interviews were transcribed verbatim and analyzed using scientific phenomenology to identify essential constituents of the experience. The identified general meaning structure contained five essential constituents. These included self-questioning of abilities; signal for increased future caregiver responsibilities; changed perception of personal self; unexpected emotional responses; and seeing a changed person, not the disease. Study findings represent family caregivers' lived perceptions of resistiveness to care, which are different from current research findings regarding nurses' perceptions of resistiveness to care. The identified meaning structure indicates focus areas for future research and for nursing interventions to help family caregivers manage their distress when experiencing resistiveness to care. Identification of the meaning caregivers ascribe to their lived experience of resistiveness to care (five essential constituents) provides nurses with opportunities to help family caregivers (coproviders of care) holistically. Supporting caregivers in their caregiving role can decrease caregiver distress when resistiveness to care occurs. © 2017 Sigma Theta Tau International.

  1. Avoidant coping and poor sleep efficiency in dementia caregivers

    PubMed Central

    Taylor, Briana J.; Irish, Leah A.; Martire, Lynn M.; Siegle, Greg J.; Krafty, Robert T.; Schulz, Richard; Hall, Martica H.

    2015-01-01

    Objective Caring for a spouse with dementia is a source of chronic stress and is associated with a heightened prevalence of self-reported sleep problems. Styles and strategies for coping with stress have been associated with objective measures of sleep in non-caregiver populations. The current study evaluated relationships between caregiver coping style and sleep disturbance using in-home polysomnography. Methods Sixty spousal caregivers (mean age 73.31±7.05; 81.7% female), completed the Brief Cope (COPEB), the Hamilton Rating Scale for Depression (HRSD) and three nights of in-home polysomnography. Participants were categorized into two groups based on the presence or absence of clinically significant low sleep efficiency (less than 80%). A factor analysis of the COPEB yielded higher order factors that included approach coping and avoidant coping (explained variance, 27.2% and 16.9%, respectively). Coping factors were entered into a binary logistic regression predicting sleep efficiency group while controlling for sleep apnea, medication use and depression, as measured by the HRSD. Results In fully adjusted models, for each unit increase on the avoidant coping factor participants were 4.9 times more likely to be classified in the low sleep efficiency group (B=1.601, χ2(1)=3.943, p=.047, exp(B)=4.956, 95% CI:1.021–24.057). Approach coping was unrelated to sleep efficiency in both adjusted and unadjusted models. Conclusions These findings highlight the importance of coping among caregivers and indicate that avoidant coping may be a modifiable predictor of sleep disturbance in conditions of chronic stress. PMID:26458234

  2. Experience of Dementia-related Anxiety in Middle-aged Female Caregivers for Family Members with Dementia: A Phenomenological Study.

    PubMed

    Kim, Jeong Sun; Kim, Eun Ha; An, Minjeong

    2016-06-01

    In Korea, most elderly with dementia receive care from family members, yet little research is available on the experience of dementia-related anxiety in middle-aged female caregivers for a family member with dementia. The purpose of this study was to describe the lived experience of dementia-related anxiety in middle-aged female caregivers for family members with dementia. A descriptive phenomenological study was conducted. A purposive sampling strategy was used to recruit participants. Twelve middle-aged women (40-59 years, mean age = 51.90 years) who were family caregivers were interviewed from February 2014 to August 2014. Data were collected through semistructured interviews and analyzed using Giorgi's method. The essential structure of the phenomenon was a fear of losing self-identity. The main essence was represented by six components: keenly feeling the effects of aging because of memory deficit, continuous comparison of the family member's behavior with that of the participant's, Finding it painful to see a family member with dementia as he/she does not know how this will end, not knowing the conclusion of the disease process, reducing the risk of dementia, and trying to change one's lifestyle from what it used to be in the past. The study provides the essential structure of the experience on dementia-related anxiety that caregivers of a family member with dementia have. The findings could help healthcare providers and researchers have better understanding of dementia-related anxiety and give more attention to the caregivers to relieve their anxiety. Copyright © 2016. Published by Elsevier B.V.

  3. Treating sleep problems in dementia caregivers based on parent-child interventions.

    PubMed

    Gallagher, Katherine Steiger; Odenheimer, Germaine; Kunik, Mark E

    2011-08-01

    Interventions developed for improving sleep in parents of young children or in developmentally delayed children might also prove effective for persons with dementia and their caregivers. We selectively reviewed the literature for interventions effective in improving sleep in parents of young children or in developmentally delayed children. Graduated extinction and adult fading have been minimally explored in dementia populations. They are fairly brief and could be administered during primary care or dementia clinic visits. Combination strategies such as extinction and sleep-enhancing medication are very effective and may be applicable for persons with dementia and their caregivers. Physical capabilities and degree of cognitive decline of patients with dementia must be considered, and medical staff and caregivers should adjust behavioral strategies to maximize the use of patients' intact cognitive abilities. Interventions for divergent populations prone to similar problems as those of patients with dementia might be effective and advance existing research.

  4. Caregiving experiences of family members of persons with dementia in south India.

    PubMed

    Narayan, Suzanne M; Varghese, Mathew; Hepburn, Kenneth; Lewis, Marsha; Paul, Isabel; Bhimani, Rozina

    2015-08-01

    This study reports on the first phase of an investigation aimed at adapting The Savvy Caregiver program, a successful family caregiving curriculum developed in the United States, for application in South India. Thirty family members caring for a person with dementia were interviewed regarding their experiences as caregivers (CGs). Qualitative interviews were conducted with the family member at a geriatric clinic, while other diagnostic procedures were being carried out with the person with dementia. Findings from the study revealed that although family members understood the term CG, none could identify a word for CG in his or her language. There was little understanding of dementia as an illness. Family CGs reported feeling distressed, overwhelmed, and frustrated with caregiving. Caregivers were interested in an educational program, but many had unrealistic expectations for what they wanted to learn. The findings provide directions for adapting The Savvy Caregiver curriculum for Indian family CGs. © The Author(s) 2015.

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

    PubMed

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

    2009-09-01

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

  6. Strategies for sustaining self used by family caregivers for older adults with dementia.

    PubMed

    Bull, Margaret J

    2014-06-01

    The negative health consequences of caring for an older adult family member with dementia are well documented. However, not all family caregivers experience these negative health consequences. The purposes of this study were to describe strategies family caregivers use to help them continue to provide care for an older family member with dementia despite challenges and describe these family caregivers' resilience and psychological distress. A mixed methods design was used with a narrative approach dominant and standardized scales for resilience and psychological distress used to enhance the description of the sample. Data were collected through telephone interviews with 18 family caregivers residing in an urban area. The findings indicate that family caregivers used four strategies to sustain the self: drawing on past life experiences, nourishing the self, relying on spirituality, and seeking information about dementia. Understanding strategies used by family caregivers to sustain themselves is essential for providing holistic nursing care and developing effective interventions.

  7. Hearing Their Voice: A Systematic Review of Dementia Family Caregivers' Needs.

    PubMed

    McCabe, Marita; You, Emily; Tatangelo, Gemma

    2016-10-01

    The number of Australians living with dementia is expected to increase from currently 332,000 to 900,000 by 2050. Around 200,000 unpaid caregivers are caring for community-dwelling people living with dementia, and therefore, supporting the caregivers' needs is of paramount importance. The aim of this systematic review was to understand the perceived needs of immediate family caregivers of community-dwelling older adults with dementia. We examined qualitative studies that reported on the self-perceived needs of partner and/or offspring caregivers who were caring for community-dwelling older adults with dementia. Two themes were developed from 12 studies: caregiver needs related to the management of older people with dementia and caregivers' personal needs. The first theme further included four subthemes: information and knowledge needs; activities of daily living, instrumental activities of daily living and Behavioural and Psychological Symptoms of Dementia support needs; formal care support needs; and informal care support needs. The second theme consisted of two subthemes: the need to address caregivers' physical and psychological health and the need to manage caregivers' own lives. The findings have important implications for the development of interventions that comprehensively address caregivers' individual needs. Caregivers' unmet needs highlight key areas for improvement in policy and service provision. The findings demonstrate the need for more rigorous qualitative studies exploring the perceived needs of partner and offspring caregivers respectively. Furthermore, examining the underlying relationships between different caregiver needs is warranted. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  8. What is known about dementia care recipient violence and aggression against caregivers?

    PubMed

    Wharton, Tracy C; Ford, Bryan K

    2014-01-01

    Aggression is a known behavior in dementia, but there is little in the literature about risk to home-based caregivers in situations where severe aggression is present. This article examines this issue with a focus on what is known and where further research is needed. Rates of severe aggression by dementia care recipients against caregivers are estimated at greater than 20%, and may be the strongest predictor of nursing home placement. Measures containing both assessment of behavior and objective measures of caregiver trauma are needed, along with interventions aimed at educating and protecting caregivers while respecting communicative properties of behavior.

  9. Characteristics and underlying meaning of hoarding behavior in elders with Alzheimer's dementia: caregivers' perspective.

    PubMed

    Wang, Jing-Jy; Feldt, Karen; Cheng, Wen-Yun

    2012-09-01

    Dementia and its associated problem behaviors remain bothersome to family and professional caregivers. Exploring characteristics and the underlying meaning of disruptive behaviors in elders with Alzheimer's dementia can be a first step to pursuing patient-centered care. Although hoarding is relatively harmless, unattended excessive hoarding can create health and safety issues for both patients and caregivers. This study examined the characteristics and underlying meaning of hoarding behavior among Taiwanese elders with Alzheimer's dementia from the perspective of family caregivers. We used an exploratory research design and purposive sampling. A total of 12 family caregivers of elders with Alzheimer's dementia received qualitative interview. We used one-on-one in-depth interviews to collect data and content analysis to analyze data. Three main characteristics related to hoarding behavior emerged from the data were "influence of former and current symptoms," "recurrence of the original personal characteristics and habits," and "re-experiencing past economic crises." These three characteristics reflected patients' past social and family background and the current life situation. We elicited "a desire for security" as the underlying meaning of hoarding behavior. Findings of this study provide a reference for family and professional care providers to understand dementia-related problem behaviors. Improved caregiver understanding of dementia patient behaviors may help improve caregiver-patient interaction and communication and help caregivers better meet patient needs.

  10. Informal Caregivers of People with Dementia: Problems, Needs and Support in the Initial Stage and in Subsequent Stages of Dementia: A Questionnaire Survey

    PubMed Central

    Zwaanswijk, Marieke; Peeters, José M; van Beek, Adriana PA; Meerveld, Julie HCM; Francke, Anneke L

    2013-01-01

    Objective: The ageing of the population is expected to lead to an increase in the prevalence of dementia. Providing support to informal caregivers is essential to promote their wellbeing and prevent serious caregiver burden. The aim of the study is to investigate whether differences occur between the initial and later stages of dementia in terms of (1) problems experienced by informal caregivers in the provision of care, (2) use of professional support by persons with dementia, (3) informal caregivers’ needs for additional professional support. Methods: The data were collected within the framework of the Dutch National Dementia Program, which was instigated in 2005 by the Dutch Ministry of Health, Welfare and Sport to improve integrated care for people with dementia and their informal caregivers. This paper is based on data of a questionnaire survey among 1494 informal caregivers, collected between September 2007 and December 2008. Results: Most informal caregivers (98-99%) experienced problems in caring for a person with dementia, irrespective of the stage of the illness process. In later stages, informal caregivers more often experienced problems in their social networks. Most dementia patients (87-94%) received ambulatory professional support. Conclusions: Since informal caregivers indicate a need for additional professional support in all stages of dementia, professional support should be provided during the entire illness process. Informal caregivers need advice on how to cope with symptoms of dementia, how to deal with behavior problems and receive more information about (early and advanced stages of) dementia and the supply of support. PMID:23346266

  11. The Thoughts Questionnaire (TQ) for family caregivers of people with dementia.

    PubMed

    Sullivan, Karen A; Beattie, Elizabeth; Khawaja, Nigar G; Wilz, Gabriele; Cunningham, Lauren

    2016-11-01

    To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable. A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n = 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; Mage = 64.30, standard deviation = 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively. The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r = .287, p = .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items. This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs. © The Author(s) 2014.

  12. 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.

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

    PubMed

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

    2015-10-01

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

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

    PubMed

    Sadak, Tatiana; Wright, Jacob; Borson, Soo

    2016-07-05

    The National Alzheimer's Plan calls for improving health care for people living with dementia and supporting their caregivers as capable health care partners. Clinically useful measurement tools are needed to monitor caregivers' knowledge and skills for managing patients' often complex health care needs as well as their own self-care. We created and validated a comprehensive, caregiver-centered measure, Managing Your Loved One's Health (MYLOH), based on a core set of health care management domains endorsed by both providers and caregivers. In this article, we describe its development and preliminary cultural tailoring. MYLOH is a questionnaire containing 29 items, grouped into six domains, which requires <20 min to complete. MYLOH can be used to guide conversations between clinicians and caregivers around health care management of people with dementia, as the basis for targeted health care coaching, and as an outcome measure in comprehensive dementia care management interventions.

  15. Health economic analysis on a psychosocial intervention for family caregivers of persons with dementia.

    PubMed

    Dahlrup, Beth; Nordell, Eva; Steen Carlsson, Katarina; Elmståhl, Sölve

    2014-01-01

    Psychosocial intervention has shown positive effects on the caregivers' burden and satisfaction. The aims of this study were to describe the cost and cost-effectiveness of such an intervention. We analyzed resource use and costs of formal care for 308 persons with dementia and their caregivers' health-related quality of life (HRQoL). The costs of home help services were lower in the subgroup of spouse caregivers in the intervention group and the cost of nursing home placement was lower in the intervention group. While the person with dementia lived at home, caregivers in the intervention group reported a higher HRQoL (p < 0.01). After the person with dementia had moved to a nursing home, spouses in the control group had a lower HRQoL (p < 0.001). The result can be interpreted as a positive effect of the intervention focusing on the identified specific needs of the family caregivers.

  16. 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

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

    PubMed

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

    2013-11-01

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

  18. Association between caregiver depression and individual behavioral and psychological symptoms of dementia in Taiwanese patients.

    PubMed

    Huang, Si-Sheng; Liao, Yi-Cheng; Wang, Wen-Fu

    2015-09-01

    The aim of this study was to investigate caregiver depression associated with neuropsychiatric symptoms in Taiwanese people. A cross-sectional design was used in this study. Two hundred seventy-six pairs of patients with dementia and their caregivers who visited the memory clinic of a general hospital from July 2001 to October 2008 were recruited. Caregiver depression was evaluated with the Center for Epidemiologic Studies Depression Scale (CES-D); the behavioral and psychological symptoms of dementia were evaluated using the Neuropsychiatric Inventory. Demographic data of the patients and caregivers, including cognitive functions and clinical dementia ratings, were collected. In addition to descriptive statistics, we examined the relationship between each parameter and caregiver depression using Pearson correlation, independent t-test, or analysis of variance. The results showed a statistically significant positive correlation between the total Neuropsychiatric Inventory score and CES-D score (r = 0.345, P < 0.001) in the bivariate analyses. For individual behavioral and psychological symptoms of dementia, agitation/aggression, anxiety, nighttime behavior disturbances, irritability/lability, and hallucinations were the five leading symptoms significantly associated with caregiver depression (CES-D). Carefully managing these symptoms is likely to reduce depression in dementia caregivers. © 2015 Wiley Publishing Asia Pty Ltd.

  19. 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. © The Author(s) 2014.

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

    PubMed

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

    2016-01-01

    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. 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. 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. 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.

  1. Recruiting Chinese Americans for dementia caregiver intervention research: suggestions for success.

    PubMed

    Gallagher-Thompson, Dolores; Rabinowitz, Yaron; Tang, Paulette C Y; Tse, Collins; Kwo, Elizabeth; Hsu, Shannon; Wang, Peng-Chih; Leung, Laurie; Tong, Hui-Qi; Thompson, Larry W

    2006-08-01

    The purpose of this study was to compare the relative effectiveness of three recruitment modalities for enrolling Chinese-American and white family caregivers into research studies to evaluate intervention strategies. A total of 116 Chinese Americans and 134 whites were screened for eligibility to participate in one of two clinical intervention trials. Participants were recruited using: 1) media sources; 2) nonprofessional referral sources; or 3) professional referrals. Each participant was asked an open-ended question about how they became aware of the programs offered. A smaller proportion of Chinese Americans (39%) than whites (50%) who responded to recruiting strategies actually enrolled as subjects. There was a significant interaction between ethnicity and recruitment strategy. Chinese-American caregivers who were recruited by nonprofessional sources were less likely to enroll in the intervention studies than those who were recruited through media sources or professional referrals. Whites, on the other hand, were more likely to be recruited through nonprofessional sources than the other two. A consumer-oriented approach, which included direct face-to-face contact with key community leaders, generated the highest number of Chinese-American participants. Culture-specific factors such as trust-building with social service agencies, demonstrating genuine commitment to the well-being of the target community, and linguistic and ethnic matching between research staff and potential participants appear helpful to successful research recruitment in this rapidly increasing segment of dementia caregivers.

  2. Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

    PubMed

    Wladkowski, Stephanie P

    2017-01-01

    Hospice offers holistic support for individuals living with terminal illness and their caregivers. Some individuals receiving hospice services experience a slower decline in health as than expected, resulting in a 'live discharge' from hospice. A live discharge affects both patient and caregiver(s).The current study (N=24) explored the experiences of caregivers of adults with dementia who experienced a live discharge from hospice. Findings emphasize the comprehensive services covered under the Medicare Hospice benefit and those lost after a live discharge. Implications for social workers supporting caregivers are discussed, including the need to view the patient-caregiver unit during a live discharge.

  3. 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…

  4. 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…

  5. Health of Spouse Caregivers of Dementia Patients: The Role of Personality and Social Support.

    ERIC Educational Resources Information Center

    Monahan, Deborah J.; Hooker, Karen

    1995-01-01

    Examined measures of social support and personality to determine their influence on health outcomes of 51 spouse caregivers of dementia patients. Results indicated a relationship between health outcomes and personality and social support. This finding may help practitioners target and improve interventions with dementia patients and their…

  6. Systematic review of the effect of psychological interventions on family caregivers of people with dementia.

    PubMed

    Selwood, A; Johnston, K; Katona, C; Lyketsos, C; Livingston, G

    2007-08-01

    Caregivers of people with dementia are at high risk of psychological morbidity and associated breakdown in care. Many psychologically based interventions have been designed to help caregivers of people with dementia. More work is needed to identify which, if any, are helpful for such caregivers. We conducted a systematic review of the immediate and long term efficacy of different types of psychological interventions for the psychological health of caregivers of people with dementia, using standardized criteria, to assist clinicians in implementing rational, evidence-based management recommendations. We reviewed studies examining the effects of any therapy derived from a psychological approach that satisfied pre-specified criteria. Using the Oxford Centre for Evidence-Based Medicine criteria we rated the quality of each study, extracted data and gave overall ratings to different types of intervention. We identified 244 references in our search of which 62 met our inclusion criteria. Our findings are limited by lack of good quality evidence, with only ten level 1 studies identified. We found excellent evidence for the efficacy of six or more sessions of individual behavioral management therapy centered on the care recipient's behavior in alleviating caregiver symptoms both immediately and for up to 32 months. Teaching caregivers coping strategies either individually or in a group also appeared effective in improving caregiver psychological health both immediately and for some months afterwards. Group interventions were less effective than individual interventions. Education about dementia by itself, group behavioral therapy and supportive therapy were not effective caregiver interventions.

  7. 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…

  8. Beyond Strain: Personal Strengths and Mental Health of Mexican and Argentinean Dementia Caregivers.

    PubMed

    Sutter, Megan; Perrin, Paul B; Peralta, Silvina Victoria; Stolfi, Miriam E; Morelli, Eliana; Peña Obeso, Leticia Aracely; Arango-Lasprilla, Juan Carlos

    2016-07-01

    Life expectancy is increasing in Latin America resulting in the need for more family caregivers for older adults with dementia. The purpose of the current study was to examine the relationships between personal strengths (optimism, sense of coherence [SOC], and resilience) and the mental health of dementia caregivers from Latin America. Primary family dementia caregivers (n = 127) were identified via convenience sampling at the Instituto de Neurociencias de San Lucas, Argentina, and CETYS University, in Baja California, Mexico and completed measures of these constructs. Personal strengths explained between 32% and 50% of the variance in caregiver mental health. In a series of hierarchical multiple regressions, more manageability (β = -.38, p = .001), general resilience (β = -.24, p = .012), and social competence (β = -.21, p = .034) were uniquely associated with lower depression. Greater comprehensibility (β = -.28, p = .008) was uniquely associated with decreased burden, and manageability was marginally related (β = -.21, p< .10). Greater optimism (β = .37, p< .001) and manageability (β = .27, p = .004) were uniquely associated with increased life satisfaction. The personal strengths of caregivers in Latin America may be particularly important for their mental health because of the culturally imbedded sense of duty toward older family members. Incorporating strengths-based approaches into research on caregiver interventions in regions where caregiving is a highly culturally valued role such as Latin America may have the potential to improve the mental health of dementia caregivers. © The Author(s) 2015.

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

    ERIC Educational Resources Information Center

    Haley, William E.; And Others

    1987-01-01

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

  10. [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. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  11. 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…

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

    ERIC Educational Resources Information Center

    Haley, William E.; And Others

    1987-01-01

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

  13. 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…

  14. 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…

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

    PubMed Central

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

    2015-01-01

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

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

    PubMed Central

    Day, Jennifer R.; Anderson, Ruth A.

    2011-01-01

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

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

    PubMed

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

    2014-02-01

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

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

    PubMed

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

    2014-10-01

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

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

    PubMed

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

    2017-09-01

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

  20. Dementia Services Mini-Screen: a simple method to identify patients and caregivers in need of enhanced dementia care services.

    PubMed

    Borson, Soo; Scanlan, James M; Sadak, Tatiana; Lessig, Mary; Vitaliano, Peter

    2014-08-01

    Improving dementia care in health systems requires estimates of need in the population served. We explored whether dementia-specific service needs and gaps for patients and caregivers could be predicted by simple information readily captured in routine care settings. Primary family caregivers (n = 215) rated their own current stress, challenging patient behaviors, and prior-year needs and gaps in 16 medical and psychosocial services. These were evaluated with other patient and caregiver characteristics in multivariate regressions to identify unique predictors of service needs and gaps. Caregiver stress and patient behavior problems together accounted for an average of 24% of the whole-sample variance in total needs and gaps. All other variables combined (comorbid chronic disease, dementia severity, age, caregiver relationship, and residence) accounted for a mean of 3%, with none yielding more than 4% in any equation. We combined stress and behavior problem indicators into a simple screen. In early/mild dementia dyads (n = 111) typical in primary care settings, the screen identified gaps in total (84%) and psychosocial (77%) care services for high stress/high behavior problem dyads vs. 25% and 23%, respectively, of low stress/low behavior problem dyads. Medical care gaps were dramatically higher in high stress/high behavior problem dyads (66%) than all others (12%). The Dementia Services Mini-Screen is a simple tool that could help clinicians and health systems rapidly identify dyads needing enhanced dementia care, track key patient and caregiver outcomes of interventions, and estimate population needs for new service development. Copyright © 2014 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

  1. The Dementia Services Mini-Screen: A Simple Method to Identify Patients and Caregivers Needing Enhanced Dementia Care Services

    PubMed Central

    Borson, Soo; Scanlan, James M.; Sadak, Tatiana; Lessig, Mary; Vitaliano, Peter

    2014-01-01

    Objective The National Alzheimer’s Plan calls for targeted health system change to improve outcomes for persons with dementia and their family caregivers. We explored whether dementia-specific service needs and gaps could be predicted from simple information that can be readily acquired in routine medical care settings. Method Primary family caregivers for cognitively impaired older adults (n=215) were asked about current stress, challenging patient behaviors, and prior-year needs and gaps in 16 medical and psychosocial services. Demographic data, caregiver stress, and patient clinical features were evaluated in regression analyses to identify unique predictors of service needs and gaps. Results Caregiver stress and patient behavior problems together accounted for an average of 24% of the whole-sample variance in total needs and gaps. Across all analyses, including total, medical, and psychosocial services needs and gaps, all other variables combined (comorbid chronic disease, dementia severity, age, caregiver relationship, and residence) accounted for an accounted for a mean of 3%, with no variable yielding more than 4% in any equation. We combined stress and behavior problem indicators into a simple screen. In early/mild dementia dyads (n=111) typical in primary care settings, the screen identified gaps in total and psychosocial care in 84% and 77%, respectively, of those with high stress/high behavior problems vs. 25% and 23%, respectively, of those with low stress/low behavior problems. Medical care gaps were dramatically higher in high stress/high behavior problem dyads (66%) than all others (12%). Conclusion A simple tool (likely completed in 1–2 minutes) which combines caregiver stress and patient behavior problems, the Dementia Services Mini-Screen, could help clinicians rapidly identify high need, high gap dyads. Health care systems could use it to estimate population needs for targeted dementia services and facilitate their development. PMID:24315560

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

    PubMed Central

    2013-01-01

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

  3. The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: a systematic review.

    PubMed

    Quinn, Catherine; Clare, Linda; Woods, Robert T

    2010-02-01

    The majority of people in the early and middle stages of dementia are cared for at home by non-paid caregivers, the majority of whom will be family members. Two factors which could have an impact on the quality of care provided to the care-recipient are the caregiver's motivations for providing care and the meaning s/he finds in caregiving. The aim of this review is to explore the potential impact of both meaning and motivation on the wellbeing of caregivers of people with dementia. The review also explores individual differences in motivations to provide care. This was a systematic review of peer-reviewed empirical studies exploring motivations and meanings in informal caregivers of people with dementia. Four studies were identified which examined the caregiver's motivations to provide care. Six studies were identified which examined the meaning that caregivers found in dementia caregiving. Caregivers' wellbeing could be influenced by the nature of their motivations to care. In addition, cultural norms and caregivers' kin-relationship to the care-recipient impacted on motivations to provide care. Finding meaning had a positive impact on caregiver wellbeing. The limited evidence currently available indicates that both the caregiver's motivations to provide care and the meaning s/he finds in caregiving can have implications for the caregiver's wellbeing. More research is needed to explore the role of motivations and meaning in dementia caregiving.

  4. Psychosocial correlates of nutritional status of family caregivers of persons with dementia.

    PubMed

    Rullier, Laetitia; Lagarde, Alexia; Bouisson, Jean; Bergua, Valérie; Torres, Marion; Barberger-Gateau, Pascale

    2014-01-01

    This exploratory study investigated the associations of individual characteristics of both persons with dementia and family caregivers with the nutritional status of caregivers. This cross-sectional study was conducted at home by psychogerontologist within the frame of a community gerontological center in rural areas of south west France. The study participants comprised 56 community-dwelling persons with dementia (mean 80.7 years, SD 6.5) and 56 family caregivers (mean 70.9 years, SD 11.0). Persons with dementia were assessed with Mini-Mental State Examination (MMSE), Basic Activities Of Daily Living (ADL), Instrumental ADL (IADL), and NeuroPsychiatric Inventory (NPI), and family caregivers with the Burden Interview (Zarit scale), the State-Trait Anxiety Inventory (STAI Y-B), the Center for Epidemiologic Studies Depression Scale (CES-D), the emotional impact measure of NPI and the Autonomy, Gerontology and Group Resources scale (AGGIR scale). For both, nutritional status was evaluated using the Mini Nutritional Assessment (MNA®). Among family caregivers, 32.1% were at risk of malnutrition and 5.4% were malnourished, and among people with dementia, 58.9% and 23.2%, respectively. NPI severity score of apathy of persons with dementia (Beta = -0.342, p = 0.001), dependency on AGGIR scale (Beta = -0.336, p = 0.002), and CES-D score of caregivers (Beta = -0.365, p = 0.001) were associated with caregivers' MNA score (Adjusted R 2 = 0.480, p < 0.001). These preliminary findings emphasize the need for routine assessment of depressive symptoms, functional and nutritional status in dementia family caregivers, and confirm the value of investigating caregivers' nutritional risk through an integrative view including psychosocial approach.

  5. Acceptability of a guided self-help Internet intervention for family caregivers: mastery over dementia.

    PubMed

    Pot, Anne Margriet; Blom, Marco M; Willemse, Bernadette M

    2015-08-01

    The number of people with dementia is increasing rapidly. Providing care to a relative or friend with dementia may lead to serious mental health problems. Internet interventions may offer opportunities to improve the availability and accessibility of (cost)effective interventions to reduce family caregivers' psychological distress. This study describes the acceptability of a guided self-help Internet intervention "mastery over dementia" (MoD), aimed at reducing caregivers' psychological distress, in terms of reach, adherence and user evaluation. The sample for this study is the experimental group that participated in the (cost)effectiveness trial of MoD (N = 149). Data on characteristics of family caregivers and people with dementia, completion and user evaluation were used and analyzed with descriptive statistics, χ2and T-tests. MoD reaches a wide variety of caregivers, also those aged 75+, having a relative with a recent diagnosis of dementia or living in a care home. However, the percentage of caregivers who did not complete all eight lessons was rather high (55.7%). Among the completers (N = 66; 44.3%) were significantly more spouses, caregivers living in the same household, older caregivers, and those caring for somebody with another formal diagnosis than Alzheimer's disease. Caregivers' evaluation showed that females rated higher on the comprehensibility of the lessons and feedback and spent less time on the lessons. The guided self-help Internet intervention MoD is acceptable for a broad range of family caregivers of people with dementia. The next step is to substantiate its (cost)effectiveness.

  6. Conceptualization of an evidence-based smartphone innovation for caregivers and persons living with dementia.

    PubMed

    Zhang, Melvyn W B; Chan, Sally; Wynne, Olivia; Jeong, Sarah; Hunter, Sharyn; Wilson, Amada; Ho, Roger C M

    2016-09-14

    Recent statistics released by Alzheimer's Disease International has highlighted how prevalent dementia will become in the next couple of years. Along with the increased incidence of individuals being diagnosed with dementia, there has also been an increment in the number of informal carers for people living with dementia. A recent report highlighted that in Australia, there are an estimated of 200,000 informal carers as of 2011. Caring for people who are living with dementia is not an easy task. Previous studies have highlighted that as much as 65% of caregivers do experience symptoms suggestive of depressive symptoms in the process of care. With the rapid advances in technology, it is of no surprise that information technology and its related innovations have been used in dementia care. A review of the existing literature shows that much of these innovations are focused on the care of patients affiliated with dementia. However, clearly interventions focusing on the needs of the dementia cohort of patient are limited. There are currently more emerging studies demonstrating the efficacy of web-based interventional toolkits for carers who are caring for individuals with dementia. Whilst there are previous studies demonstrating the effectiveness of smartphone interventions for dementia patients, there remains a paucity of smartphone based interventions for caregivers who are living with people with dementia. This technical note describes the conceptualization of an evidence based smartphone intervention for patients living with dementia, as well as for carers of these patients.

  7. Effectiveness of online cognitive behavioral therapy on family caregivers of people with dementia.

    PubMed

    Kwok, Timothy; Au, Alma; Wong, Bel; Ip, Isaac; Mak, Vivian; Ho, Florence

    2014-01-01

    Family caregivers of persons with dementia (PWD) may receive caregiver training because of logistical constraints and privacy concerns. This study evaluated the effectiveness of an online intervention for family caregivers of PWD in improving their self-efficacy in managing behavioral and psychological symptoms of dementia (BPSD), and their emotion well-being. A total of 36 family caregivers of people with dementia participated in a 9-week online intervention based on the cognitive behavioral therapy model. Outcomes of the intervention were measured by the Chinese version of the Neuropsychiatric Inventory Questionnaire and two domains of the Revised Scale for Caregiving Self-Efficacy. Wilcoxon signed rank tests were used to compare the change in outcome variables. The severity of BPSD of PWD and BPSD-related distress in family caregivers showed a statistically significant reduction after the intervention. Subgroup analysis showed self-efficacy in controlling upsetting thoughts significantly improved in caregivers of PWD at moderate to severe stages. Online cognitive behavioral therapy for family caregivers reduced BPSD of PWD and the related distress in their caregivers.

  8. 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

  9. Influence of caregiver singing and background music on posture, movement, and sensory awareness in dementia care.

    PubMed

    Götell, Eva; Brown, Steven; Ekman, Sirkka-Liisa

    2003-12-01

    Previous research suggested caregiver singing could influence persons with severe dementia to communicate with increased competence, to cease aggression, and to cease disruptive screaming, while at the same time they seemed to understand what was going on when being cared for during morning care sessions. The aim of this study was to illuminate the posture, body movements, and sensory awareness of patients with dementia during three types of morning care sessions with professional caregivers: (a) the usual morning care situation, (b) a caring session in which familiar background music was played, and (c) a caring session in which the caregiver sang to and/or with the patient throughout. Nine patients with late-stage dementia and 5 professional caregivers participated in this study, and 27 sessions were videotaped (9 patients x 3 caring situations). DATA COLLECTION AND METHOD: Data collection was done by means of video recording and the data were analyzed using qualitative content analysis. During the usual caring situation, patients demonstrated slumped posture, sluggish and asymmetric motion, listlessness, minimal awareness of both egocentric space and the physical environment, and a poor ability to perform to completion activities necessary for personal care. Both background music playing and caregiver singing had strong influences on the body and on sensory awareness. Patients had straightened posture, stronger and more symmetric movements, and a greatly increased awareness of themselves and their environment. Patients appeared to regain skills necessary for daily living, and demonstrated that they could perform tasks with intention, purpose, and competence. Caregiver singing, in particular, was very effective at drawing out capabilities that appeared to be lost in these patients. In addition, caregiver singing elicited a larger degree of mutuality in the interaction between patient and caregiver than was seen with background music. These results provide further

  10. Preserving Personhood of Individuals with Advanced Dementia: Lessons from Family Caregivers

    PubMed Central

    Palmer, Janice L.

    2014-01-01

    This article reports on a phenomenological study of 15 family caregivers who admitted their spouse or parent with probable Alzheimer’s disease to long-term care. The caregivers were attuned to the needs, desires, moods and concerns of their family members with dementia; thus, they were attuned to personhood. Caregivers also reported observations of care by nurses and nursing staff. Observations were of individualized care and actions that promoted personhood and impoverished care delivered with minimal or no communication. These family caregivers’ perspectives can inform the care of individuals with advanced dementia by nurses and nursing staff. PMID:23583171

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

    PubMed

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

    2016-01-01

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

  12. Understanding the needs of family caregivers of older adults dying with dementia.

    PubMed

    Thompson, Genevieve N; Roger, Kerstin

    2014-06-01

    A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services. A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011. Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers. Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

  13. Evaluation of a group cognitive-behavioral dementia caregiver intervention in Latin America.

    PubMed

    Arango-Lasprilla, Juan Carlos; Panyavin, Ivan; Merchán, Edna Johanna Herrera; Perrin, Paul B; Arroyo-Anlló, Eva M; Snipes, Daniel J; Arabia, Jaqueline

    2014-09-01

    Research has identified unique cultural factors contributing to dementia caregiving in Latin America but very few caregiver interventions have been systematically piloted and evaluated in this region. The purpose of this study was to examine the effectiveness of a group cognitive-behavioral intervention in improving the mental health of dementia caregivers from Cali, Colombia. Sixty-nine caregivers of individuals with dementia were randomly assigned to the cognitive-behavioral intervention or an educational control condition, both spanning 8 weeks. Compared to controls, the treatment group showed higher satisfaction with life and lower depression and burden over the posttest and 3-month follow-ups although there was no effect of the condition on participants' stress levels. © The Author(s) 2014.

  14. Improved Strain and Psychosocial Outcomes for Caregivers of Individuals with Dementia: Findings from Project ANSWERS.

    PubMed

    Judge, Katherine S; Yarry, Sarah J; Looman, Wendy J; Bass, David M

    2013-04-01

    This study examined the efficacy of a newly developed intervention, Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS), for family caregivers of individuals with dementia. ANSWERS was designed for dyads comprised of an individual with dementia and his/her family caregiver. Using a strength-based approach, ANSWERS combined educational skills (traditionally used with caregivers) and cognitive rehabilitation skills training (traditionally used with individuals with dementia) into a single protocol for addressing the dyad's care issues and needs. Key domains addressed by the intervention included: education about dementia and memory loss; effective communication; managing memory; staying active; and recognizing emotions and behaviors. This analysis focused on outcomes for caregivers. The Stress Process Model guided the study's hypotheses and design. Caregiving dyads were randomly assigned to the control or intervention conditions. Intervention dyads received 6-curriculum guided sessions with an intervention specialist. Data came from in-person baseline interviews with caregivers conducted prior to randomization and follow-up interviews conducted approximately 14.56 weekspost-baseline. Intervention caregivers, compared to controls, had decreased care-related strain as indicated by lower emotional health strain, dyadic relationship strain, role captivity, and higher caregiving mastery. Additionally, intervention caregivers had improved well-being as indicated by fewer symptoms of depression and anxiety. ANSWERS was efficacious in improving key strain and psychosocial outcomes for caregivers. Features essential to the success of ANSWERS included a strength-based approach for selecting, developing, and implementing care goals, as well as teaching caregivers educational and cognitive rehabilitation skills for addressing care needs.

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

    PubMed Central

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

    2016-01-01

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

  16. Feasibility of a pocket-PC based cognitive control intervention in dementia spousal caregivers.

    PubMed

    Callan, Judith A; Siegle, Greg J; Abebe, Kaleab; Black, Beverly; Martire, Lynn; Schulz, Richard; Reynolds, Charles; Hall, Martica H

    2016-01-01

    Spousal caregivers of patients with dementia are in need of interventions to bolster their quality of life. Computer-based, self-administered cognitive training is an innovative approach to target spousal caregiver distress and coping. We tested the feasibility of administering one such intervention with minimal clinician intervention. Twenty-seven elderly adults (>64 years old), who each were the primary caregiver for a spouse with dementia, were recruited through the Memory Disorders Clinic of the Alzheimer Disease Research Center in Pittsburgh, PA. Spousal caregivers were instructed to use a handheld computer version of the Adaptive Paced Visual Serial Attention Task (APVSAT) at least three times per week for four weeks as part of a larger caregiver intervention trial (P01 AG020677). Feasibility was explored by examining the frequency of APVSAT usage. Results suggest that self-directed cognitive training is feasible for spousal caregivers of dementia patients. The mean usage of the APVSAT was 42 (SD = 28.58). Performance increased from the beginning to the end of the trial, and usage was not affected by stress, worry, or poor sleep quality. Findings suggest the potential utility of cognitive training via handheld computer for spousal caregivers of dementia patients to improve problem solving, coping and adaptation, planning, and persevering with goal-directed tasks.

  17. Supporting the dementia family caregiver: the effect of home care intervention on general well-being.

    PubMed

    Schoenmakers, Birgitte; Buntinx, Frank; DeLepeleire, Jan

    2010-01-01

    Although high volumes of literature have been written on interventions in dementia home care, only a poor efficiency has been proved. Nevertheless, caregivers often express strong feelings of satisfaction about the proposed support. In this meta-analytic review, a quantitative analysis of the effect of the different types of professional dementia home care interventions was made. A systematic literature search, covering the years 1980 until 2007, was performed using Medline, Embase, Cochrane DSR, Dare, CCTR, and ACP Journal Club). Limitations on publication type were determined as randomized controlled trial and controlled trial. Psychosocial intervention in dementia home care was found to be beneficial in a non-significant way on caregivers' burden. An almost negligible decrease in depression was found in the psychosocial intervention arm while multidisciplinary case management contributed to a larger though insignificant decrease of depression in caregivers. Respite care was responsible for an increase in burden. This review demonstrated, in accordance with other qualitative reviews, the weak evidence that supporting family caregivers could be beneficial. Although the rather small benefits of formal support, supporting family caregivers is an indispensable issue in dementia home care. Professional caregivers should keep in mind that family caregivers highly appreciate the intervention and that they feel less burdened or depressed in the short time follow up but that premature home care remains more rule than exception.

  18. Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review.

    PubMed

    Stansfeld, Jacki; Stoner, Charlotte R; Wenborn, Jennifer; Vernooij-Dassen, Myrra; Moniz-Cook, Esme; Orrell, Martin

    2017-08-01

    Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice. A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties. Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory. There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.

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

    PubMed Central

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

    2016-01-01

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

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

    PubMed

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

    2016-10-10

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

  1. Dyadic interventions for community-dwelling people with dementia and their family caregivers: a systematic review.

    PubMed

    Van't Leven, Netta; Prick, Anna-Eva J C; Groenewoud, Johanna G; Roelofs, Pepijn D D M; de Lange, Jacomine; Pot, Anne Margriet

    2013-10-01

    In this review, we study the effects of dyadic psychosocial interventions focused on community-dwelling people with dementia and their family caregivers, and the relationship of the effects with intervention components of programs. A search from January 2005 to January 2012 led to 613 hits, which we reviewed against our inclusion criteria. We added studies from 1992 to 2005 reviewed by Smits et al. (Smits, C. H. M., De Lange, J., Droes, R.-M., Meiland, F., Vernooij-Dassen, M. and Pot, A. M. (2007). Effects of combined intervention programs for people with dementia living at home and their caregivers: a systematic review. International Journal of Geriatric Psychiatry, 22, 1181–1193). We assessed the methodological quality of 41 programs with the Cochrane criteria and two items of the Oxford Centre of Evidence-based Medicine guidelines. Studies of moderate to high quality concerning 20 different dyadic psychosocial programs for people with dementia and caregivers were included. Nineteen of these programs show significant effects on the patient with dementia, the caregiver, or both. Due to differences in the programs and the studies, this study does not provide an unequivocal answer about which programs are most effective. Programs with intervention components that actively train one or more specific functional domains for the person with dementia and/or the caregiver seem to have a beneficial impact on that domain, although there are exceptions. Reasons can be found in the program itself, the implementation of the program, and the study design. Dyadic psychosocial programs are effective, but the outcomes for the person with dementia and the caregiver vary. More attention is needed for matching the targeted functional domains, intervention components, and delivery characteristics of a program with the needs of the person with dementia and the family caregiver.

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

    PubMed

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

    2013-02-01

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

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

    PubMed

    Xiao, Lily Dongxia; Wang, Jing; He, Guo-Ping; De Bellis, Anita; Verbeeck, Jenny; Kyriazopoulos, Helena

    2014-01-23

    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. 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. 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. Dementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like China. In Australia, dementia services need to have

  4. Confirmatory factor analysis of a brief version of the Zarit Burden Interview in Black and White dementia caregivers.

    PubMed

    Flynn Longmire, Crystal V; Knight, Bob G

    2011-08-01

    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 equally across various groups. Therefore, this study considers the psychometric properties of a brief version of the ZBI with particular attention to its factor structure and metric equivalence across two racial groups. Distribution, reliability, and confirmatory factor analyses were performed with a 14-item three-factor ZBI factor model in a sample of 175 Black and 225 White caregivers of family members with dementia. The 14 ZBI items were reliable and fairly normally distributed for both groups. The three-factor model fits the data and was invariant across the Black and White caregivers for number of factors, factor loadings, and factor covariances. These findings contribute to the literature on the factor structure of the ZBI and provide new data on the invariance of the ZBI across two racial/ethnic groups of caregivers. This study provides support for the validity of findings that compare the burden scores of Black and White caregivers in studies utilizing the ZBI. The 14-item version also offers a more parsimonious way to measure burden in clinical settings, potentially increasing screening opportunities when caregiver contact time is limited.

  5. Examining trust in health professionals among family caregivers of nursing home residents with advanced dementia.

    PubMed

    Boogaard, Jannie A; Werner, Perla; Zisberg, Anna; van der Steen, Jenny T

    2017-07-20

    In a context of increasing emphasis on shared decision-making and palliative care in dementia, research on family caregivers' trust in health professionals in advanced dementia is surprisingly scant. The aim of the present study was to assess trust in nursing home health professionals of family caregivers of nursing home residents with advanced dementia, and possible correlates, such as family caregivers' satisfaction, involvement in care, care burden and patients' symptom burden. A cross-sectional study was carried out using structured questionnaires administered through the telephone. Generalized estimating equation analyses with adjustment for nursing home clustering were applied to assess the most important associations with family caregivers' trust. A total of 214 family caregivers of persons with dementia residing in 25 nursing homes participated in the study. The majority of the participants (67%) were women and adult children (75%). The majority of the family caregivers trusted physicians, nurses and nurses' aides at a moderate-to-high level. Approximately half to one-third reported moderate-to-low levels of trust. Higher levels of trust were associated with more positive care outcomes, such as higher family satisfaction with care and more positive evaluations of physician-family communication. The present study showed the importance of family caregivers trusting nursing home health professionals for their experiences as caregivers. Although causation cannot be established, increased family caregivers' trust in nursing home health professionals by improving communication and exchange of information might provide a good basis for providing optimal palliative care in advanced dementia. Geriatr Gerontol Int 2017; ••: ••-••. © 2017 Japan Geriatrics Society.

  6. A systematic review of Internet-based supportive interventions for caregivers of patients with dementia.

    PubMed

    Boots, L M M; de Vugt, M E; van Knippenberg, R J M; Kempen, G I J M; Verhey, F R J

    2014-04-01

    Because of the expected increase in the number of dementia patients, the unlikelihood of a cure in the near future, and the rising cost of care, there is an increasing need for effective caregiver interventions. Internet interventions hold considerable promise for meeting the educational and support needs of informal dementia caregivers at reduced costs. The current study aims to provide an overview of the evidence for the effectiveness, feasibility, and quality of Internet interventions for informal caregivers of people with dementia. A systematic literature search of five scientific databases was performed, covering literature published up to 10 January 2013. Twelve studies were identified. The quality of the included studies was assessed according to the Cochrane level of evidence and the criteria list of the Cochrane Back Review Group. The intervention types, dosage, and duration differed widely, as did the methodological quality of the included studies. The overall level of evidence was low. However, the results demonstrate that Internet interventions for informal dementia caregivers can improve various aspects of caregiver well-being, for example, confidence, depression, and self-efficacy, provided they comprise multiple components and are tailored to the individual. Furthermore, caregivers could benefit from interaction with a coach and other caregivers. Internet interventions for informal dementia caregivers may improve caregiver well-being. However, the available supporting evidence lacks methodological quality. More randomized controlled studies assessing interventions performed according to protocol are needed to give stronger statements about the effects of supportive Internet interventions and their most promising elements. Copyright © 2013 John Wiley & Sons, Ltd.

  7. 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.

  8. 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.

  9. In-home monitoring support for dementia caregivers: a feasibility study.

    PubMed

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

    2013-05-01

    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 a Midwestern University Alzheimer's Disease Center. The caregiver triggered video recordings on a laptop computer using a remote control that also recorded 5 min 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.

  10. 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

  11. Impact of the REACH II and REACH VA Dementia Caregiver Interventions on Healthcare Costs.

    PubMed

    Nichols, Linda O; Martindale-Adams, Jennifer; Zhu, Carolyn W; Kaplan, Erin K; Zuber, Jeffrey K; Waters, Teresa M

    2017-05-01

    Examine caregiver and care recipient healthcare costs associated with caregivers' participation in Resources for Enhancing Alzheimer's Caregivers Health (REACH II or REACH VA) behavioral interventions to improve coping skills and care recipient management. RCT (REACH II); propensity-score matched, retrospective cohort study (REACH VA). Five community sites (REACH II); 24 VA facilities (REACH VA). Care recipients with Alzheimer's disease and related dementias (ADRD) and their caregivers who participated in REACH II study (analysis sample of 110 caregivers and 197 care recipients); care recipients whose caregivers participated in REACH VA and a propensity matched control group (analysis sample of 491). Previously collected data plus Medicare expenditures (REACH II) and VA costs plus Medicare expenditures (REACH VA). There was no increase in VA or Medicare expenditures for care recipients or their caregivers who participated in either REACH intervention. For VA care recipients, REACH was associated with significantly lower total VA costs of care (33.6%). VA caregiver cost data was not available. In previous research, both REACH II and REACH VA have been shown to provide benefit for dementia caregivers at a cost of less than $5/day; however, concerns about additional healthcare costs may have hindered REACH's widespread adoption. Neither REACH intervention was associated with additional healthcare costs for caregivers or patients; in fact, for VA patients, there were significantly lower healthcare costs. The VA costs savings may be related to the addition of a structured format for addressing the caregiver's role in managing complex ADRD care to an existing, integrated care system. These findings suggest that behavioral interventions are a viable mechanism to support burdened dementia caregivers without additional healthcare costs. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.

  12. The burden of caring for dementia patients: caregiver reports from a cross-sectional hospital-based study in China.

    PubMed

    Mould-Quevedo, Joaquín F; Tang, Boxiong; Harary, Eran; Kurzman, Ricky; Pan, Sharon; Yang, Jiyue; Qiao, Juan

    2013-10-01

    The impact of dementia care on caregivers' professional, personal, emotional and social well-being was measured in a cohort of 1,387 caregivers in seven regions across mainland China, using a Chinese version of the Zarit Burden Interview (ZBI) and four supplementary questions. Caregivers also estimated costs of care and medical resource utilization. Caregiver burden was generally low to moderate. Dementia care had the greatest impact on caregivers' professional lives, with 25.5% reporting a reduced work schedule in the past month. Lost work time was greater for caregivers of patients with previously diagnosed dementia than for those with newly diagnosed dementia. Average monthly out-of-pocket costs of dementia care exceeded national average monthly incomes of rural and urban residents. These findings highlight the obstacles facing the country with the fastest-growing elderly population in the world.

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

    PubMed

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

    2016-12-04

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

  14. Caregiver- and patient-directed interventions for dementia: an evidence-based analysis.

    PubMed

    2008-01-01

    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 AnalysesPrevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based AnalysisBehavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based AnalysisCaregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based AnalysisSocial Isolation in Community-Dwelling Seniors: An Evidence-Based AnalysisThe 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: IntroductionCaregiver-Directed Interventions for DementiaPatient-Directed Interventions for DementiaEconomic Analysis of Caregiver- and Patient-Directed Interventions for Dementia CAREGIVER-DIRECTED INTERVENTIONS FOR DEMENTIA: To identify interventions that may be

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

    PubMed Central

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

    2014-01-01

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

  16. Social Representation of Dementia and Its Influence on the Search for Early Care by Family Member Caregivers.

    PubMed

    Juárez-Cedillo, Teresa; Jarillo-Soto, Edgar C; Rosas-Carrasco, Oscar

    2014-06-01

    Social representations (SRs) contain 3 dimensions: information, attitude, and field. These affect the recognition of the first symptoms of dementia by the patient's caregiver. This study focused on the period from the first signs of cognitive difficulties to the diagnosis of dementia. Eight caregivers of elderly patients with dementia were interviewed to construct their SRs regarding dementia and how this influences seeking medical treatment during the first stages of the disease. Social representations were analyzed through a structural focus, based on the content analysis. Decision making is related to knowledge about dementia, attitude (emotions and sensitivity), and the concept of the caregiver about the relative with dementia. The results confirm the importance of the symbolic dimension of personal experience in managing care and seeking medical treatment. The presence of dementia in the family creates interpersonal dilemmas that caregivers experience. The solutions are framed in the sociocultural context. © The Author(s) 2013.

  17. Features of problematic eating behaviors among community-dwelling older adults with dementia: family caregivers' experience.

    PubMed

    Hsiao, Hua-Chen; Chao, Hui-Chen; Wang, Jing-Jy

    2013-01-01

    This study aimed to explore family caregivers' experience of the problematic eating behaviors among community-dwelling older adults with dementia, and how these caregivers cope with these problems. An exploratory qualitative study using purposive sampling recruited family caregivers of community-dwelling older adults with dementia in southern Taiwan. In-depth interviews were carried out with a semi-structured interview guide. Data were saturated when the number of participants reached a certain number. The following three features were derived from the content analysis: fundamental deviations of eating behaviors, expressing needs through eating behaviors, and loss of eating ability. The results also show that caregivers often derived their own ways of coping with the problems they faced, and tended to have negative attitudes and behaviors with regard to coping with the demands of older adults with dementia. The findings of this study can provide valuable information to family caregivers with regard to the problematic eating behaviors of older adults with dementia, so that early recognition and understanding of such behaviors facilitate appropriate responses, thus reducing the burden shouldered by caregivers. Copyright © 2013 Mosby, Inc. All rights reserved.

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

    PubMed

    Rodriguez-Sánchez, Emiliano; Criado-Gutiérrez, José María; Mora-Simón, Sara; Muriel-Diaz, M Paz; Gómez-Marcos, Manuel A; Recio-Rodríguez, José I; Patino-Alonso, M Carmen; Valero-Juan, Luis F; Maderuelo-Fernandez, José A; García-Ortiz, Luis

    2014-04-01

    The aging of the population has led to the increase of chronic diseases, especially dementia and cardiovascular diseases, and it has become necessary for their relatives to dedicate more time in caregiving.The objective in the first phase of this study is to evaluate the effectiveness of a Primary Health Care procedure to increase the physical activity of people with dementia and their relative caregivers. Also the effect on the cognitive state and cardiovascular risk will be assessed. Clinical, multicentric and randomized trial. A simple random sampling to select 134 patients diagnosed with dementia will be carried out. After contacting their relatives, his/her participation in the trial will be requested. A basal assessment will be made and the participants will be asigned to control or intervention group (1:1). The main measure will be the assessment of physical activity (podometer and 7-PAR) in patients and caregivers. In patients with dementia: ADAS-cog, functional degree and cardiovascular risk. In caregivers: cardiovascular risk, general health and quality of life. For 3 months, participants will receive instructions to do physical activity with an adapted program. This program will be designed and applied by Primary Health Care professionals in patients with dementia and their caregivers. The control group will receive regular care. An intention-to-treat analysis will be carried out by comparing the observed differences between basal, 6 and 12 months measures. Change in the mean of daily steps assessed with the podometer and 7-PAR will be the main result. If the main hypothesis is confirmed, it could be useful to improve the cognitive state of patients with dementia, as well as the cardiovascular risk of all of them. The results can be good to improve technical features of the devices that register the physical activity in the patients with dementia, and it could facilitate its commercialization. Clinical Trials.gov Identifier: NCT02044887.

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

    PubMed

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

    2013-01-01

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

  20. 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

  1. Religiosity and quality of life: a dyadic perspective of individuals with dementia and their caregivers.

    PubMed

    Nagpal, Neha; Heid, Allison R; Zarit, Steven H; Whitlatch, Carol J

    2015-01-01

    Dyadic coping theory purports the benefit of joint coping strategies within a couple, or dyad, when one dyad member is faced with illness or stress. We examine the effect of religiosity on well-being for individuals with dementia (IWDs). In particular, we look at the effect of both dyad members' religiosity on perceptions of IWDs' quality of life (QoL). Neither of these issues has been extensively explored. One hundred eleven individuals with mild-to-moderate dementia and their family caregivers were interviewed to evaluate IWDs' everyday-care values and preferences, including religious preferences. Using an actor-partner multi-level model to account for the interdependent relationship of dyads, we examined how IWD and caregiver ratings of religiosity (attendance, prayer, and subjective ratings of religiosity) influence perceptions of IWDs' QoL. After accounting for care-related stress, one's own religiosity is not significantly related to IWDs' or caregivers' perceptions of IWD QoL. However, when modeling both actor and partner effects of religiosity on perceptions of IWDs' QoL, caregivers' religiosity is positively related to IWDs' self-reports of QoL, and IWDs' religiosity is negatively associated with caregivers' perceptions of IWDs' QoL. These findings suggest that religiosity of both the caregiver and the IWD affect perception of the IWD's QoL. It is important that caregivers understand IWDs' values concerning religion as it may serve as a coping mechanism for dealing with dementia.

  2. A telephone intervention for dementia caregivers: background, design, and baseline characteristics.

    PubMed

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

    2013-11-01

    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, transition theory, and Lazarus and Folkman's 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. © 2013.

  3. Empowering older people with early dementia and family caregivers: a participatory action research study.

    PubMed

    Nomura, Michie; Makimoto, Kiyoko; Kato, Motoko; Shiba, Tamami; Matsuura, Chieko; Shigenobu, Kazue; Ishikawa, Tomohisa; Matsumoto, Naomi; Ikeda, Manabu

    2009-04-01

    The increase in the number of people suffering from dementia is of increasing global concern. A survey on the living conditions of the elderly in a Japanese rural community revealed a high prevalence of early dementia and the necessity for interventions not only for the elderly with early dementia but also for their families. To describe the implementation and process evaluation of a programme based on cognitive rehabilitation aimed at empowering the elderly with early dementia and education and counselling programmes aimed at likewise empowering their family caregivers. This study used a community health action research model. Participatory action research (PAR) was conducted through a cycle of planning, action, and reflection to identify effective interventions to empower participants with dementia (PsWD) and their caregivers. A rural town in Japan. This project involved 37 community-dwelling elderly with early or mild dementia and 31 family caregivers. A focus group interview was used for assessment. A monthly activity-based programme based on cognitive rehabilitation was developed to improve cognitive function. Three types of data were collected: observational data collected during the activities, written comments from the caregivers, the record of phone interviews and counsellings with caregivers. These data were compiled in chronological order into a portfolio for analysis. To empower family caregivers, educational and counselling programmes were offered. The PAR lasted for 5 years and evolved over three cycles: individual, group and community. In the first cycle, the major focus of the intervention was to regain procedural skills for each PWD through a cooking programme. In the second cycle, to increase interactions with family members and with other PsWD, group activities that promoted communication among family members as well as among PsWD were implemented. The collective values and the beliefs of the PsWD's generation were validated by a series of trips

  4. Effects of gender and dementia severity on Alzheimer's disease caregivers' sleep and biomarkers of coagulation and inflammation.

    PubMed

    Mills, Paul J; Ancoli-Israel, Sonia; von Känel, Roland; Mausbach, Brent T; Aschbacher, Kirstin; Patterson, Thomas L; Ziegler, Michael G; Dimsdale, Joel E; Grant, Igor

    2009-07-01

    Being a caregiver for a spouse with Alzheimer's disease is associated with increased risk for cardiovascular illness, particularly for males. This study examined the effects of caregiver gender and severity of the spouse's dementia on sleep, coagulation, and inflammation in the caregiver. Eighty-one male and female spousal caregivers and 41 non-caregivers participated (mean age of all participants 70.2 years). Full-night polysomnography (PSG) was recorded in each participants home. Severity of the Alzheimer's disease patient's dementia was determined by the Clinical Dementia Rating (CDR) scale. The Role Overload scale was completed as an assessment of caregiving stress. Blood was drawn to assess circulating levels of D-dimer and Interleukin-6 (IL-6). Male caregivers who were caring for a spouse with moderate to severe dementia spent significantly more time awake after sleep onset than female caregivers caring for spouses with moderate to severe dementia (p=.011), who spent a similar amount of time awake after sleep onset to caregivers of low dementia spouses and to non-caregivers. Similarly, male caregivers caring for spouses with worse dementia had significantly higher circulating levels of D-dimer (p=.034) than females caring for spouses with worse dementia. In multiple regression analysis (adjusted R(2)=.270, p<.001), elevated D-dimer levels were predicted by a combination of the CDR rating of the patient (p=.047) as well as greater time awake after sleep onset (p=.046). The findings suggest that males caring for spouses with more severe dementia experience more disturbed sleep and have greater coagulation, the latter being associated with the disturbed sleep. These findings may provide insight into why male caregivers of spouses with Alzheimer's disease are at increased risk for illness, particularly cardiovascular disease.

  5. Continuity of home-based care for persons with dementia from formal and family caregivers' perspective.

    PubMed

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

    2016-12-06

    Western health care policy emphasizes continuity of care for people with dementia. This paper presents formal and family caregivers' descriptions of collaboration in home-based dementia care and explores whether this collaboration inhibits or enables continuity of care and the use of the statutory individual plan. Empirical data were derived from 18 in-depth interviews with formal and family caregivers and brief fieldwork. The results reveal dynamic positions in collaborative practice and, from these positions, discrepancies in descriptions of practices and the needs of the person with dementia. Such micro-level discrepancies may serve as barriers for macro-level continuity of care objectives. To ensure continuity of care, formal and family caregivers must be aware of their positions and discuss specific expectations for information flow, involvement and care responsibilities. Individual plan can serve as a starting point for such discussions.

  6. Nutritional status of community-dwelling older people with dementia: associations with individual and family caregivers' characteristics.

    PubMed

    Rullier, Laetitia; Lagarde, Alexia; Bouisson, Jean; Bergua, Valérie; Barberger-Gateau, Pascale

    2013-06-01

    The objective of this study was to explore the associations of individual characteristics of both older people with dementia and family caregivers with the nutritional status of older people with dementia. This cross-sectional study comprising 56 community-dwelling older persons with dementia and 56 family caregivers was conducted at home by a psychogerontologist working for a community gerontological center. Older people with dementia were assessed with Mini mental state examination, Instrumental Activities of Daily Living, Activities of Daily Living (ADL), and NeuroPsychiatric Inventory (NPI) and family caregivers with the Burden Interview (Zarit scale), the State-Trait Anxiety Inventory, the Center for Epidemiologic Studies Depression Scale, and the emotional impact measure of NPI. For both, nutritional status was evaluated using the Mini Nutritional Assessment (MNA). Among older people with dementia, 58.9% were at risk of malnutrition and 23.2% presented a poor nutritional status, and among the family caregivers, 32.1% and 5.4%, respectively. The MNA score of older people with dementia was strongly and inversely associated with the ADL score and was strongly and positively associated with the MNA score of family caregiver. These two factors significantly explained 32% of variation of MNA score of older people with dementia. These findings confirm the value of investigating nutritional deficiencies in dementia within the caregiving dyad and suggest that the functional status of older people with dementia and the nutritional status of family caregivers should be carefully assessed. Copyright © 2012 John Wiley & Sons, Ltd.

  7. Development of a measure to evaluate gains among spanish dementia caregivers: The gains associated with caregiving (GAC) scale.

    PubMed

    Fabà, Josep; Villar, Feliciano; Giuliani, M Florencia

    The study is aimed at developing a new measure devised to evaluate gains associated with caregiving for a person with dementia. We conducted two studies with Spanish informal caregivers. In Study 1 a total of 152 participants responded to a preliminary set of 62 items referred to gains related with caregiving. After exploring their psychometric properties, we studied its factor structure, concurrent validity, and internal consistency reliability by means of, respectively, an exploratory factor analysis (EFA), its correlation with the similar measures, and Cronbach's alpha coefficients. In Study 2 we undertook a confirmatory factor analysis (CFA) to obtain further evidence regarding the scale dimensionality and we studied its construct validity by calculating its correlations with the Zarit Burden Interview (ZBI), the Geriatric Depression Scale - Short Form (GDS-SF), and the Satisfaction With Life Scale (SWLS). The final version of the Gains Associated with Caregiving (GAC) scale comprised 22 items, all of which seemed to belong to the same factor according to both the EFA and the CFA. The correlation between the GAC scale and similar measures was statistically significant and strong, and the Cronbach's α coefficient was 0.95. Statistically significant correlations in the expected direction were found between the GAC and the ZBI, the GDS-SF, and the SWLS. The high internal consistency of the GAC scale, and its adequate concurrent and construct validity suggest that it is a suitable instrument for evaluating gains among Spanish informal dementia caregivers. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

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

    PubMed Central

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

    2010-01-01

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

  9. 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

  10. Developing Culturally Sensitive Dementia Caregiver Interventions: Are We There Yet?

    PubMed Central

    Nápoles, Anna M.; Chadiha, Letha; Eversley, Rani; Moreno-John, Gina

    2013-01-01

    Despite evidence of ethnic differences in family caregivers’ experiences, the extent to which caregiver interventions are culturally tailored to address these differences is unknown. A systematic review of literature published from 1980–2009 identified: differences in caregiving experiences of African American, Latino and Chinese American caregivers; psychosocial support interventions in these groups; and cultural tailoring of interventions. Ethnic differences in caregiving occurred at multiple levels (intrapersonal, interpersonal, environmental) and in multiple domains (psychosocial health, life satisfaction, caregiving appraisals, spirituality, coping, self-efficacy, physical functioning, social support, filial responsibility, familism, views toward elders, use of formal services and health care). Only 18 of 47 intervention articles reported outcomes by caregiver ethnicity. Only 11 reported cultural tailoring; 8 were from the REACH initiative. Cultural tailoring addressed: familism, language, literacy, protecting elders, and logistical barriers. Results suggest that more caregiver intervention studies evaluating systematically the benefits of cultural tailoring are needed. PMID:20508244

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

    PubMed

    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

    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. 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). 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 (χ(2)=47.446, P<0.001). A multiple linear regression analysis showed that depression (adjusted R(2)=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). 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.

  12. 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…

  13. 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…

  14. Ethical aspects of caregivers' experience with persons with dementia at mealtimes.

    PubMed

    Hammar, Lena Marmstål; Swall, Anna; Meranius, Martina Summer

    2016-09-01

    Persons with dementia are at risk of malnutrition and thus in need of assistance during mealtimes. Research suggest interventions for caregivers to learn how to facilitate mealtimes and eating, while other suggest a working environment enabling the encounter needed to provide high-quality care. However, the phenomenon of caring for this unique population needs to be elucidated from several perspectives before suggesting suitable implications that ensure their optimal health. To illustrate the meanings within caregivers' experiences of caring for persons with dementia during mealtime situations. We also measured weight and food intake among individuals with dementia to explain better the phenomenon of caring for them during mealtimes. Mixed method including focus group interviews with seven caregivers analyzed using phenomenological hermeneutics. In addition, for nine persons with dementia, weight and food intake were collected and descriptive statistics were calculated. Ethical review was obtained from an ethics committee, and all caregivers signed a consent form after being informed on the issue of research ethics. Relatives for persons with dementia were informed and signed the consent. In addition, throughout the study, the persons' expressions were observed aiming to respect their vulnerability, integrity, and dignity. One theme emerged from interviews (struggling between having the knowledge and not the opportunity), which was built upon three subthemes (being engaged and trying; feeling abandoned and insufficient; being concerned and feeling guilty). Seven of nine persons with dementia lost a minimum of 1.3 kg of weight and ate a maximum of 49.7% of the food served. Caregivers struggle because they have knowledge about how to provide high-quality care but are unable to provide this care due to organizational structures. The weight loss and insufficient eating among the persons with dementia may support this conclusion. Sufficient time for adequate care should

  15. 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. © The Author(s) 2015.

  16. [Evaluation of a cognitive-behavioral group intervention for family caregivers of persons with dementia].

    PubMed

    Wilz, Gabriele; Kalytta, Tanja

    2012-01-01

    International studies have revealed that dementia caregivers' health deteriorates as a result of intensive at-home care. A cognitive-behavioral group intervention concept was therefore tailored to the needs of dementia caregivers and aimed at an increase in psychological well-being and the prevention of adverse effects on psychological health. The group concept was evaluated with an intervention-control group design (N=86 IG; N=92 CG) in a prospective longitudinal study. Outcome variables, assessed at 3 point of measurement, were depressive symptoms, symptoms of anxiety, health-related quality of life, and physical health. Compared to caregivers in the control group, caregivers in the intervention group showed significantly lower symptoms of depression and anxiety at follow-up, which was consistent with the hypotheses. Furthermore, nursing home placement was delayed. © Georg Thieme Verlag KG Stuttgart · New York.

  17. Family caregiving of older Chinese people with dementia: testing a model.

    PubMed

    Liu, Yu; Insel, Kathleen C; Reed, Pamela G; Crist, Janice D

    2012-01-01

    The process of taking care of older people with dementia at home is complex and influenced by cultural factors, necessitating a better understanding of the interrelationships of factors within the context of culture. The aim of this study was to test the proposed Dementia Caregiving Model, specifying how caregiving appraisal, coping, perceived social support, and familism influence the impact of caregiving stressors on the psychological health of caregivers. A cross-sectional correlational design with a convenience sample (n = 96) from three outpatient clinics of hospitals in China was used. Questionnaires were utilized to measure the variables in the model. Path analysis was used to assess model fit and paths. The original proposed model did not fit the data, butminor modifications produced a very good model fit (χ(10, n = 96) = 8.14, p = .62; goodness-of-fit index = .98, comparative fit index = 1.00, and root mean square error of approximation < .001). Care recipients' behavioral problems had direct and indirect negative effects on caregivers' psychological health. Perceived social support had direct and indirect positive effects on caregivers' psychological health. Familism had indirect positive effects on caregivers' psychological health in relation with caregiving satisfaction and coping. Caregiving appraisal and coping were mediators in the model. The model findings lend support that caregivers' cognitive appraisal and coping explain some observed individual differences in stress response and outcomes. The findings broaden understanding of the effects of familism on caregivers' psychological health. In the future, programs should include interventions for caregivers, as well as interventions for care recipients.

  18. A systematic review of intervention studies about anxiety in caregivers of people with dementia.

    PubMed

    Cooper, Claudia; Balamurali, T B S; Selwood, Amber; Livingston, Gill

    2007-03-01

    There is considerable literature on managing depression, burden and psychological morbidity in caregivers of people with dementia (CG). Anxiety has been a relatively neglected outcome measure but may require specific interventions. To synthesise evidence regarding interventions that reduce anxiety in CGs. Twenty-four studies met our inclusion criteria. We rated the methodology of studies, and awarded grades of recommendation (GR) for each type of intervention according to Centre for Evidence Based Medicine guidelines, from A (highest level of evidence) to D. Anxiety level was the primary outcome measure in only one study and no studies were predicated on a power calculation for anxiety level. There was little evidence of efficacy for any intervention. The only RCT to report significantly reduced anxiety involved a CBT and relaxation-based intervention specifically devised to treat anxiety, and there was preliminary evidence (no randomised controlled trials) that caregiver groups involving yoga and relaxation without CBT were effective. There was grade B evidence that behavioural management, exercise therapies and respite were ineffective. Many interventions were heterogeneous, so there is some overlap between groups. Lack of evidence of efficacy is not evidence of lack of efficacy. CBT and other therapies developed primarily to target depression did not effectively treat anxiety. Good RCTs are needed to specifically target anxiety which might include relaxation techniques. Some of the interventions focussed on reducing contact with the care recipients but caregivers may want to cope with caring and preliminary evidence suggests strategies to help CGs manage caring demands may be more effective. (c) 2006 John Wiley & Sons, Ltd.

  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.

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

    PubMed Central

    2013-01-01

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

  1. [Mobile dementia counseling as low-threshold assistance for caregiving relatives].

    PubMed

    Reichert, Monika; Hampel, S; Reuter, V

    2016-04-01

    Comprehensive and easily accessible information and counseling for people with dementia and their caregivers can improve home care in many ways; however, for various reasons the affected persons rarely seek help and advice. When advice is sought the caregiving situation at home is mostly already in a crisis. The Rhine-Erft district, a rural area in Germany, improved its network of dementia care services by establishing a mobile gerontopsychiatric counseling service with a special focus on dementia. A multiprofessional and interdisciplinary team consisting of professional and voluntary personnel in a specially equipped bus offers free counseling at several public places in the district at least once a month. The project was accompanied and scientifically evaluated by the authors of this article from 2012 to 2015. The German Ministry of Health funded the evaluation. The main objective of the scientific evaluation was to examine how to implement the mobile counseling in order to improve the situation for people with dementia and their informal caregivers. A mixture of quantitative (e.g. standardized questionnaires) and qualitative (e.g. semi-structured interviews) methods was employed. The data show that the mobile counseling service fulfills an important role in the navigation into the healthcare system and contributes to the easing of caregiver burden. In particular, the low threshold of the service proved to be very effective. The mobile counseling service can reach those caregivers who would have sought professional advice too late or not at all.

  2. 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. Copyright 2014, SLACK Incorporated.

  3. Preparedness for Death: How Caregivers of Elders With Dementia Define and Perceive its Value.

    PubMed

    Hovland-Scafe, Cynthia A; Kramer, Betty J

    2016-06-23

    The purpose of this study is to ascertain how bereaved caregivers of a family member who died from a dementia-related diagnosis (a) define preparedness and (b) perceive its value. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Only one third (n = 10) of caregivers interviewed were prepared for the death, and the majority who were prepared were enrolled in hospice. Five primary themes revealed ways that caregivers define various domains of preparedness: (i) accepting reality; (ii) knowing death is near; (iii) getting your "house in order"; (iv) saying "what you need to say"; and (v) giving "permission" to die. The majority (87%) believed that it is important for caregivers to be prepared, and the value of preparedness was exemplified in five domains reflecting the benefits of being prepared. The results support further attention to the development and testing of interventions to address the unmet needs of caregivers of family members with dementia to help prepare them for the death in a variety of contexts. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  4. Effects of psychosocial interventions on self-efficacy of dementia caregivers: a literature review.

    PubMed

    Tang, Wai Kit; Chan, Chung Yan Joanne

    2016-05-01

    Self-efficacy plays an important role in mediating stressors and physical and psychological outcomes in dementia caregiving. This literature review aims to identify, summarize, and critically appraise current evidence on the psychosocial interventions used for enhancing the self-efficacy of caregivers of patients with dementia (PWD). A database search from two major web gateways was conducted to identify relevant research articles with an intervention for caregivers of patients with any type of dementia that included self-efficacy as an outcome measure. A total of 14 studies met the criteria. The key findings and characteristics of the interventions were summarized and analyzed. The results showed that caregivers' self-efficacy and other aspects could be improved by psychosocial interventions. The efficacy of the interventions for self-efficacy and other outcomes for caregivers and PWD were explored. Recommendations on the effects and significance of various psychosocial interventions for caregivers of PWD in enhancing self-efficacy were discussed. Copyright © 2015 John Wiley & Sons, Ltd.

  5. Dementia Care by Healthy Elderly Caregivers Is Associated with Improvement of Patients' Memory and the Caregivers' Quality of Life: A Before and After Study.

    PubMed

    Kang, Seung-Gul; Na, Kyoung-Sae; Kang, Jae Myeong; Yeon, Byeong Kil; Lee, Jun-Young; Cho, Seong-Jin

    2017-07-01

    The provision of care for elderly people with dementia by healthy elderly caregivers is one of the new health-care paradigms in South Korea. The aim of this study was to determine whether this type of care, which includes cognitive stimulation, would improve the cognitive function of dementia patients and the quality of life of the healthy elderly caregiver. Totals of 132 dementia patients and 197 healthy elderly caregivers participated in this study. We evaluated the cognitive function of the dementia patients at baseline and after providing the program for 6 months using the Korean version of the Consortium to Establish a Registry for Alzheimer's disease, 1st Edition (CERAD-K). We also evaluated the quality of life of the healthy elderly caregivers using the World Health Organization Quality of Life-Short Version (WHOQOL-BREF) at baseline and after 6 months. The word-list memory results of CERAD-K for the included dementia patients improved after 6 months (Z=-2.855, p=0.004). The WHOQOL-BREF score among the elderly caregiver also improved significantly (Z=-2.354, p=0.019). These data suggest that dementia care is associated with improvements in both the cognitive function of dementia patients and the quality of life of the healthy elderly caregivers.

  6. Toward a better understanding of psychological well-being in dementia caregivers: the link between marital communication and depression.

    PubMed

    Braun, Melanie; Mura, Katharina; Peter-Wight, Melanie; Hornung, Rainer; Scholz, Urte

    2010-06-01

    Dementia research has frequently documented high rates of caregiver depression and distress in spouses providing care for a partner suffering from dementia. However, the role of marital communication in understanding caregiver distress has not been examined sufficiently. Studies with healthy couples demonstrated an association between marital communication and the partners' psychological well-being, depressiveness, respectively (e.g., Heene, Buysee, & Van Oost, 2005). The current study investigates the relationship between caregiver depression and communication in 37 couples in which the wives care for their partners with dementia. Nonsequential and sequential analyses revealed significant correlations between caregiver depression and marital communication quality. Caregivers whose husbands used more positive communication reported less depression and distress. Additionally, caregiver depression was negatively correlated with rates of positive reciprocal communication indicating dependence between the couples' interaction patterns. This study is one of the first to illustrate the relevance of spousal communication in understanding caregiver distress and depression.

  7. Telephone-delivered psychoeducational intervention for Hong Kong Chinese dementia caregivers: a single-blinded randomized controlled trial.

    PubMed

    Kwok, Timothy; Wong, Bel; Ip, Isaac; Chui, Kenny; Young, Daniel; Ho, Florence

    2013-01-01

    Many family caregivers of persons with dementia (PWD) are unable to participate in community center-based caregiver support services because of logistical constraints. This study evaluated the effectiveness of a telephone-delivered psychoeducational intervention for family caregivers of PWD in alleviating caregiver burden and enhancing caregiving self-efficacy. In a single-blinded randomized controlled trial, 38 family caregivers of PWD were randomly allocated into an intervention group or a control group. The intervention group received psychoeducation from a registered social worker over the phone for 12 sessions. Caregivers in the control group were given a DVD containing educational information about dementia caregiving. Outcomes of the intervention were measured by the Chinese versions of the Zarit Burden Interview and the Revised Scale for Caregiving Self-efficacy. Mann-Whitney U tests were used to compare the differences between the intervention and control groups. The level of burden of caregivers in the intervention group reduced significantly compared with caregivers in the control group. Caregivers in the intervention group also reported significantly more gain in self-efficacy in obtaining respite than the control group. A structured telephone intervention can benefit dementia caregivers in terms of self-efficacy and caregiving burden. The limitations of the research and recommendations for intervention are discussed.

  8. Telephone-delivered psychoeducational intervention for Hong Kong Chinese dementia caregivers: a single-blinded randomized controlled trial

    PubMed Central

    Kwok, Timothy; Wong, Bel; Ip, Isaac; Chui, Kenny; Young, Daniel; Ho, Florence

    2013-01-01

    Purpose Many family caregivers of persons with dementia (PWD) are unable to participate in community center-based caregiver support services because of logistical constraints. This study evaluated the effectiveness of a telephone-delivered psychoeducational intervention for family caregivers of PWD in alleviating caregiver burden and enhancing caregiving self-efficacy. Subjects and methods In a single-blinded randomized controlled trial, 38 family caregivers of PWD were randomly allocated into an intervention group or a control group. The intervention group received psychoeducation from a registered social worker over the phone for 12 sessions. Caregivers in the control group were given a DVD containing educational information about dementia caregiving. Outcomes of the intervention were measured by the Chinese versions of the Zarit Burden Interview and the Revised Scale for Caregiving Self-efficacy. Mann–Whitney U tests were used to compare the differences between the intervention and control groups. Results The level of burden of caregivers in the intervention group reduced significantly compared with caregivers in the control group. Caregivers in the intervention group also reported significantly more gain in self-efficacy in obtaining respite than the control group. Conclusion A structured telephone intervention can benefit dementia caregivers in terms of self-efficacy and caregiving burden. The limitations of the research and recommendations for intervention are discussed. PMID:24072965

  9. Support groups for dementia caregivers - Predictors for utilisation and expected quality from a family caregiver's point of view: A questionnaire survey PART I*

    PubMed Central

    2010-01-01

    Background Support groups have proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors that influence utilisation or quality expectations of family caregivers. These questions are addressed in the following paper. Methods The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Qualitative and quantitative data from 404 caregivers were analysed using content analysis and binary logistic regression analysis. Results The only significant predictor for utilisation is assessing how helpful support groups are for the individual care situation. Family caregivers all agree that psycho-educative orientation is a priority requirement. Conclusions In order to increase the rate of utilisation, family caregivers must be convinced of the relevant advantages of using support groups. Support groups which offer an exchange of experiences, open discussion, information and advice meet the requirements of family caregivers. PMID:20667092

  10. 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…

  11. 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…

  12. 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…

  13. 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…

  14. Problem behavior of dementia patients predicts low-grade hypercoagulability in spousal caregivers.

    PubMed

    von Känel, Roland; Mausbach, Brent T; Dimsdale, Joel E; Mills, Paul J; Patterson, Thomas L; Ancoli-Israel, Sonia; Ziegler, Michael G; Roepke, Susan K; Allison, Matthew; Grant, Igor

    2010-09-01

    Low-grade hypercoagulability might be one pathway to explain how the chronic stress of dementia caregiving increases cardiovascular disease risk, but the specific aspects of caregiver stress that elicit hypercoagulability are elusive. We hypothesized that dementia patients' problem behaviors and negative reactions of caregivers to these behaviors would relate to hypercoagulability in caregivers. One hundred and eight participants (mean age 74 +/- 8 years, 70% women) providing in-home care for their spouse with Alzheimer's disease were examined. Caregivers were interviewed about the number of 24 predefined patient problem behaviors in the previous week (range 0-24) and how upset or bothered they felt in response to these behaviors (total score 0-96). Von Willebrand factor, plasminogen activator inhibitor-1, and D-dimer were determined in plasma and standardized z-scores of their concentrations summed into a procoagulant index. Greater number of problem behaviors (Delta R(2) = 0.046, p = .014) and negative reactions of caregivers to these behaviors (Delta R(2) = 0.044, p = .017) were associated with greater procoagulant index after controlling for sociodemographic factors, major cardiovascular risk factors, health habits, and health problems. However, the number of and reaction to problem behaviors did not significantly predict procoagulant activity independent from each other. Post hoc analysis revealed a positive association between the number of problem behaviors and D-dimer (p = .010, Delta R(2) = 0.053), even when controlling for negative reactions (p = .033, Delta R(2) = 0.036). Caregiver reaction to problem behaviors was not significantly associated with any procoagulant factor individually. Alzheimer patients' problem behavior and their negative appraisal by the caregiver may contribute to the chronic low-grade hypercoagulable state in dementia caregivers.

  15. The Northern Manhattan Caregiver Intervention Project: a randomised trial testing the effectiveness of a dementia caregiver intervention in Hispanics in New York City.

    PubMed

    Luchsinger, José; Mittelman, Mary; Mejia, Miriam; Silver, Stephanie; Lucero, Robert J; Ramirez, Mildred; Kong, Jian; Teresi, Jeanne A

    2012-01-01

    Dementia prevalence and its burden on families are increasing. Caregivers of persons with dementia have more depression and stress than the general population. Several interventions have proven efficacy in decreasing depression and stress in selected populations of caregivers. Hispanics in New York City tend to have a higher burden of dementia caregiving compared to non-Hispanic whites (NHW) because Hispanics have a higher prevalence of dementia, tend to have high family involvement, and tend to have higher psychosocial and economic stressors. Thus, we chose to test the effectiveness of a dementia caregiving intervention, the New York University Caregiver Intervention (NYUCI), with demonstrated efficacy in spouse caregivers in Hispanic relative caregivers of persons with dementia. Including the community health worker (CHW) intervention in both arms alleviates general psychosocial stressors and allows the assessment of the effectiveness of the intervention. Compared to two original efficacy studies of the NYUCI, which included only spouse caregivers, our study includes all relative caregivers, including common law spouses, children, siblings, a nephew and nieces. This study will be the first randomised trial to test the effectiveness of the NYUCI in Hispanic caregivers including non-spouses. The design of the study is a randomised controlled trial (RCT). Participants are randomised to two arms: case management by a CHW and an intervention arm including the NYUCI in addition to case management by the CHW. The duration of intervention is 6 months. The main outcomes in the trial are changes in the Geriatric Depression Scale (GDS) and the Zarit Caregiver Burden Scale (ZCBS) from baseline to 6 months. This trial is approved by the Columbia University Medical Center Institutional Review Board (AAAI0022), and funded by the National Institute on Minority Health and Health Disparities. The funding agency has no role in dissemination.  www.ClinicalTrials.gov NCT01306695.

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

    PubMed

    Li, Chao-Yin; Murray, MaryAnne

    2015-02-01

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

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

    PubMed

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

    2011-01-01

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

  18. 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

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

    PubMed Central

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

    2009-01-01

    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 assessed with the Geriatric Depression Scale prior to and following bereavement. Random effects regression growth curve analyses examined the effects of treatment group and bereavement while controlling for other variables Results The death of the care recipient led to reductions in depressive symptoms for both caregiving groups. Enhanced support intervention led to lower depressive symptoms compared with controls both before and after bereavement. Post-bereavement group differences were stronger for caregivers of spouses who did not previously experience a nursing home placement. These caregivers maintained these differences for more than 1 year after bereavement. Caregivers who received the enhanced support intervention were more likely to show long-term patterns of fewer depressive symptoms before and after bereavement, suggesting resilience, whereas control caregivers were more likely to show chronic depressive symptoms before and after the death of their spouse. Implications Caregiver intervention has the potential to alter the long-term course of the caregiving career. Such clinical strategies may also protect caregivers against chronic depressive symptoms that would otherwise persist long after caregiving ends. PMID:19139247

  20. The influence of caregiver singing and background music on vocally expressed emotions and moods in dementia care: a qualitative analysis.

    PubMed

    Götell, Eva; Brown, Steven; Ekman, Sirkka-Liisa

    2009-04-01

    Music and singing are considered to have a strong impact on human emotions. Such an effect has been demonstrated in caregiving contexts with dementia patients. The aim of the study was to illuminate vocally expressed emotions and moods in the communication between caregivers and persons with severe dementia during morning care sessions. Three types of caring sessions were compared: the "usual" way, with no music; with background music playing; and with the caregiver singing to and/or with the patient. Nine persons with severe dementia living in a nursing home in Sweden and five professional caregivers participated in this study. Qualitative content analysis was used to examine videotaped recordings of morning care sessions, with a focus on vocally expressed emotions and moods during verbal communication. Compared to no music, the presence of background music and caregiver singing improved the mutuality of the communication between caregiver and patient, creating a joint sense of vitality. Positive emotions were enhanced, and aggressiveness was diminished. Whereas background music increased the sense of playfulness, caregiver singing enhanced the sense of sincerity and intimacy in the interaction. Caregiver singing and background music can help the caregiver improve the patient's ability to express positive emotions and moods, and to elicit a sense of vitality on the part of the person with severe dementia. The results further support the value of caregiver singing as a method to improve the quality of dementia care.

  1. Balancing needs: the role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia.

    PubMed

    Quinn, Catherine; Clare, Linda; Woods, Robert T

    2015-03-01

    This paper investigates how meaning, motivation and relationship dynamics influence the caregivers' subjective experience of caregiving. We interviewed 12 family caregivers of relatives with dementia. We analysed transcripts of these interviews using interpretative phenomenological analysis. Six key themes emerged from the analysis, which were encompassed under an overarching theme of 'balancing needs'. This describes the caregivers' constant struggle to balance their own needs against those of their relative, which created a series of dilemmas. These dilemmas emerged from the desire to try to preserve the caregivers' relationship with their relative, while recognising that this relationship was changing. The caregivers' relationship with their relative influenced the caregivers' motivations to provide care and gave caregiving meaning. Although caregivers were motivated to provide care the battle to balance needs meant that the caregivers recognised there might come a time when they may need to cease caregiving. © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

  2. Family caregivers experiences of formal care when caring for persons with dementia through the process of the disease.

    PubMed

    Lethin, Connie; Hallberg, Ingalill Rahm; Karlsson, Staffan; Janlöv, Ann-Christin

    2016-09-01

    Family caregivers' experiences of formal care when caring for persons with dementia through the process of the disease is sparsely investigated. To investigate family caregivers' experiences of formal care when caring for a person with dementia, through the stages of the disease. A qualitative approach with focus group interviews. Four focus group interviews were conducted in October 2011 with 23 spouses and adult children of persons with dementia and analysed with content analysis. The participants' experiences of formal care when caring for a person with dementia were captured in the theme 'Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia'. This can be broken down into the categories 'The dementia diagnosis - entry into formal care as a novice family caregiver', 'Needing expanded collaboration with formal care to continue care at home' and 'Being dependent on a nursing home and trying to maintain involvement'. Family caregiving requires collaboration with formal care to get support adjusted to the individual's needs, specific to the stages of dementia. Caregivers experience a transition process with three main turning points: the dementia diagnosis; when they realise increased need for formal care to continue caring at home; and when the person with dementia is moved into a nursing home. The interviewed caregivers experience formal care reactive to their needs and this often promoted unhealthy transitions. Formal care needs to be proactive and deliver available care and support early on in the dementia trajectory. Interventions should focus on facilitating a healthy transition for family caregivers through the trajectory of the dementia disease to ensure their well-being. © 2015 Nordic College of Caring Science.

  3. Family caregiving in dementia: the Asian perspective of a global problem.

    PubMed

    Chan, Sally Wai-Chi

    2010-01-01

    With an increasing life expectancy, the number of people suffering from dementia globally will rise to about 115.4 million by 2050. It is projected that in the 21st century, the majority of the world's older people will be living in Asia. This paper examines the global issues of family caregiving for older persons with dementia from an Asian perspective. Literature review of published empirical studies from 1990 to October 2010. A full understanding of the specific way that culture could influence family caregivers' burdens may play an important part in the development of a holistic model for family-centered care. Well-designed psychoeducation interventions or multicomponent interventions could help in reducing caregivers' burden. With socio-economical and demographical changes, families need to be supported when taking on the caregiving role and be offered alternatives of care. There is a need for future trials with more rigorous randomization and longitudinal follow-up to assess family caregiver burdens at different illness stages. Future studies could focus on protective factors that promote caregivers' resilience. It is essential to develop psychometrically robust measures for family caregiver burden and gain. Copyright © 2011 S. Karger AG, Basel.

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

    PubMed

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

    2016-01-01

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

  5. Interventions for Hispanic caregivers of patients with dementia: a review of the literature.

    PubMed

    Llanque, Sarah M; Enriquez, Maithe

    2012-02-01

    The number of Hispanics/Latinos living with dementia in the United States is expected to rise from 200,000 to 1.3 million by 2050, which will result in large numbers of Hispanics/Latinos assuming the role of caregiver. The demands of caregiving can negatively impact caregivers' health. The purpose of this review was to identify intervention strategies that can help Hispanics/Latinos deal with the burden associated with providing care for older adults with dementia. The authors critically reviewed and analyzed the literature for interventions and their relevance to these caregivers. The search engines and electronics databases of Google Scholar; Social Gerontology; Health Source: Nursing/Academic Edition; MEDLINE; PsycARTICLES; CINAHL; and PubMed, were used to locate articles published between 1999 and 2011. Ten intervention studies published between 2000 and 2011 were identified that targeted Hispanic/Latino caregivers: most were from one clinical trial (REACH). Future studies should consider culturally tailoring interventions for Hispanic/Latino caregivers from differing subcultures, utilizing relevant technology in studies, and evaluating the functional level of the care receiver and assess where he/she is in the disease process continuum. A better understanding of within-group differences among Hispanic/Latino caregivers, especially with respect to acculturation, could lead to better tailoring of interventions. Future research should consider the possibility of discovery-based participatory approaches. Few studies have addressed these areas of concern in this population.

  6. An Online Program for Caregivers of Persons Living With Dementia: Lessons Learned.

    PubMed

    Kovaleva, Mariya; Blevins, Lindsey; Griffiths, Patricia C; Hepburn, Kenneth

    2017-04-01

    The population of individuals living with dementia and their caregivers and the need to provide caregiver training will increase in the next several decades. In-person caregiver educational programs are delimited by logistical and resource boundaries that could be overcome with online programs. The purpose of this qualitative descriptive study was to explore the acceptability and ways to improve the content and delivery of an online 7-week psychoeducational pilot program-Tele-Savvy. Thirty-six caregivers who completed the pilot were interviewed about their experience with Tele-Savvy and their suggestions for its improvement. Conventional content analysis allowed for the identification of three themes: barriers and facilitators to establishing rapport with participants and instructors, content enrichment and diversification, and structural refinement. These lessons learned directly from the caregivers provide evidence to guide the refinement of analogous online interventions and highlight the need for their wider availability.

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

    PubMed

    Christensen, Janelle J; Castañeda, Heide

    2014-01-01

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

  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.…

  9. 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.…

  10. Stakeholder Perspectives on Policies to Support Family Caregivers of Older Adults with Dementia

    ERIC Educational Resources Information Center

    Putnam, Michelle; Pickard, Joseph G.; Rodriguez, Carroll; Shear, Erin

    2010-01-01

    Persons with dementia are often excluded from consumer-directed home- and community-based service programs because they cannot direct their own care. Surrogates are permitted in some states, thereby allowing program participation. This study explored family caregiver perspectives on policies that support family needs related to providing care to…

  11. Dyadic Intervention for Family Caregivers and Care Receivers in Early-Stage Dementia

    ERIC Educational Resources Information Center

    Whitlatch, Carol J.; Judge, Katherine; Zarit, Steven H.; Femia, Elia

    2006-01-01

    Purpose: The Early Diagnosis Dyadic Intervention (EDDI) program provides a structured, time-limited protocol of one-on-one and dyadic counseling for family caregivers and care receivers who are in the early stages of dementia. The goals and procedures of EDDI are based on previous research suggesting that dyads would benefit from an intervention…

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

    ERIC Educational Resources Information Center

    Neundorfer, Marcia McCarthy

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

  13. Families Who Care: Assisting African American and Rural Caregivers Dealing with Dementia. A Replication Plan.

    ERIC Educational Resources Information Center

    Coogle, Constance L., Ed.; Finley, Ruth B., Ed.

    This Replication Plan describes an Administration on Aging funded Project, "Assisting Caregivers of Black and Rural Elders with Dementia: Progressive Training through Trusted Resources." The project directly developed the capacities of trusted community leaders (n=69) who served as trainers of African American and rural family caregivers…

  14. Depression or Grief? The Experience of Caregivers of People with Dementia.

    ERIC Educational Resources Information Center

    Walker, Rebecca J.; Pomeroy, Elizabeth C.

    1996-01-01

    Study of caregivers of people with dementia suggests that the depression so frequently described in the literature may not be as severe or clinically significant as previously thought and may be described as anticipatory grief. Results may assist practitioners in planning and evaluating the effectiveness of clinical interventions. (RJM)

  15. Online interventions for caregivers of people with dementia: a systematic review.

    PubMed

    Parra-Vidales, Esther; Soto-Pérez, Felipe; Perea-Bartolomé, Mª Victoria; Franco-Martín, Manuel A; Muñoz-Sánchez, Juan L

    2017-05-01

    The elderly population is growing driven by the increase in life expectancy, which in turn entails an increase in the number of people with chronic diseases such as dementia. The vast majority of people suffering from this illness is assisted by informal caregivers, who play a key role in fulfilling the patients’ needs, promoting the possibility for people with dementia to live in their home environment. The Internet as a support tool in psychoeducational programs can significantly improve accessibility of them, becoming a currently consolidated interactive resource for the training of patients with acute and chronic diseases, and their caregivers. A literature search of the Pubmed, PsyINFO, Scopus, SciELO and Psicodoc databases was performed to systematically review those studies related to web-based interventions for informal caregivers of people with dementia or cognitive impairment. On balance, the studies show a significant improvement after the psychoeducational intervention. Specifically, the improvement in caregivers’ wellbeing can be observed in the measures for self-efficacy, anxiety and depression. Online interventions are a promising strategy for the care of people with dementia. It would be advisable to perform further randomized trials to assess the reasons for lack of adherence to intervention, as well as usability studies to test the different software programs used.

  16. Resilience of caregivers of people with dementia: a systematic review of biological and psychosocial determinants.

    PubMed

    Dias, Rachel; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Nogueira, Marcela Moreira Lima; Torres, Bianca; Belfort, Tatiana; Dourado, Marcia Cristina Nascimento

    2015-01-01

    Although caregivers of people with dementia may face difficulties, some positive feelings of caregiving may be associated with resilience. This study systematically reviewed the definitions, methodological approaches and determinant models associated with resilience among caregivers of people with dementia. Search for articles published between 2003 and 2014 in ISI, PubMed/MEDLINE, SciELO and Lilacs using the search terms resilience, caregivers and dementia. Resilience has been defined as positive adaptation to face adversity, flexibility, psychological well-being, strength, healthy life, burden, social network and satisfaction with social support. No consensus was found about the definition of resilience associated with dementia. We classified the determinant variables into biological, psychological and social models. Higher levels of resilience were associated with lower depression rates and greater physical health. Other biological factors associated with higher levels of resilience were older age, African-American ethnicity and female sex. Lower burden, stress, neuroticism and perceived control were the main psychological factors associated with resilience. Social support was a moderating factor of resilience, and different types of support seemed to relieve the physical and mental overload caused by stress.

  17. 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…

  18. 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…

  19. 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…

  20. 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.

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

    PubMed Central

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

    2015-01-01

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

  2. Pilot testing of the "First You Should Get Stronger" program among caregivers of older adults with dementia.

    PubMed

    Lök, Neslihan; Bademli, Kerime

    In this study, randomized controlled interventional study pattern was used to examine the effects of the "First You Should Get Stronger" program on the caregiving burden and healthy life style behavior of caregivers of dementia patients. "Zarit Caregiver Burden Scale" and "Healthy Life Style Behavior Scale" were used. The study was completed with 40 caregivers in total with 20 in the intervention group and 20 in the control group. A statistically significant difference was determined between the "Zarit Caregiving Burden Scale" and "Healthy Life Style Behavior Scale" score averages of the intervention group that participated in the "First You Should Get Stronger" program in comparison with those of the control group. It is important for the healths of caregivers to include similar programs for the caregivers of dementia patients in continuous and regular applications. The results highlight the importance of the "First You Should Get Stronger" program significantly decreased the caregiving burden and significantly developed the healthy lifestyle behaviors of caregivers in the intervention group. Since dementia is a difficult neurological syndrome with patients cared at home, it generally wears out the caregivers significantly. It is suggested that the nurses and healthcare professionals working with dementia patients are evaluated separately and that they carry out caregiving applications within the scope of the "First You Should Get Stronger" program. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  3. 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.

  4. A chronic grief intervention for dementia family caregivers in long-term care.

    PubMed

    Paun, Olimpia; Farran, Carol J; Fogg, Louis; Loukissa, Dimitra; Thomas, Peggy E; Hoyem, Ruby

    2015-01-01

    Dementia caregivers do not relinquish their role after placing family members in long-term care and they experience increased chronic grief. The Chronic Grief Management Intervention (CGMI) is a12-week group-based program that uses guided discussion to deliver knowledge of Alzheimer's or a related dementia and teach skills in communication, conflict resolution, and chronic grief management in dementia caregivers who placed their family members in long-term care. Using a quasi-experimental design, 83 caregivers from 15 long-term care facilities received either the CGMI (n = 34) or a comparison condition consisting of two check-in calls (n = 49). In this pilot study, we examined the feasibility of implementing the CGMI and evaluated the effects of the intervention on caregivers' knowledge and skill and their chronic grief and depression. The intervention was feasible and resulted in significant improvement in caregivers' heartfelt sadness and longing at 3 months and a significant drop in their guilt at the 6-month follow-up. © The Author(s) 2014.

  5. 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

  6. Online support and education for dementia caregivers: overview, utilization, and initial program evaluation.

    PubMed

    Glueckauf, Robert L; Ketterson, Timothy U; Loomis, Jeffrey S; Dages, Pat

    2004-01-01

    Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are confronted with a variety of challenges in providing assistance to their loved ones, such as dealing with persistent, repetitive questions, managing episodes of agitation and aggressive responding, as well as monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, a significant proportion of dementia caregivers in the United States continue to receive little or no formal instruction in responding effectively to these anxiety-provoking situations. This paper describes the development and implementation of Alzheimer's Caregiver Support Online (also known as AlzOnline), an Internet- and telephone-based education and support network for caregivers of individuals with progressive dementia. An outcome analysis of a Robert Wood Johnson Foundation-funded strategic marketing initiative to promote the use of AlzOnline is reviewed, followed by a presentation of the findings of an initial program evaluation. Finally, future directions for online caregiver evaluation research are proposed.

  7. Pre-death grief in the context of dementia caregiving: a concept analysis.

    PubMed

    Lindauer, Allison; Harvath, Theresa A

    2014-10-01

    The aim of this study was to report on an analysis of the concept of pre-death grief in the context of dementia family caregiving. Research indicates that witnessing changes and losses in a family member with dementia can lead to pre-death grief. Pre-death grief is associated with depression, burden and maladaptive caregiver coping. However, the concept lacks a refined definition and blurs with similar constructs. Concept analysis using a hybrid of Penrod and Hupcey's principle-based concept analysis and Chin and Kramer's conceptualization of meaning. 49 peer-reviewed papers (2000-2013) that addressed pre-death grief in dementia family caregivers were used for the principle-based analysis; two examples from the popular media were used for the analysis of conceptual meaning. The scientific papers were examined for epistemological, linguistic, pragmatic and logical clarity. The two examples from the popular media were explored for conceptual meaning. Pre-death grief in the context of dementia caregiving is a meaningful concept found in the popular media. From a scholarly point of view, it is an emerging concept. A definition is offered to advance conceptual clarity. Discussion focuses on advancing the concept into a situation-specific middle-range theory of pre-death grief in family caregiving. The concept of pre-death grief has salience for researchers and caregivers. This analysis lays the foundation for use of the concept in nursing research and practice across cultural, environmental and illness domains. © 2014 John Wiley & Sons Ltd.

  8. Personality of the caregiver influences the use of strategies to deal with the behavior of persons with dementia.

    PubMed

    Melo, Graça; Maroco, João; Lima-Basto, Marta; de Mendonça, Alexandre

    Personality of family caregiver is an important factor influencing the caregiver's burden, depression and distress. We now hypothesized that the personality is associated with specific strategies used by family caregivers to deal with the behavioral and psychological symptoms of demented relatives (BPSD). Participants were 98 consecutive persons with dementia and their family caregivers. Assessments included: Personality (NEO-FFI), Burden (ZBI), Depression (CES-D), Cognitive Function (MMSE), BPSD (NPI), Distress (NPI-D), and an open question to identify the strategies used by caregivers when faced with BPSD. Caregivers used different strategies to cope with their relatives' behavior: avoiding conflict; confronting; reassuring; orienting; responding coercively; distracting; colluding; medicating and restricting the movements. Extraversion was the only dimension of caregiver's personality that determined the use of caregiver strategies to deal with BPSD. Extroverted caregivers used the "confronting" strategy less often. Caregiver's personality should be taken into account when designing adapted intervention programs. Copyright © 2016 Elsevier Inc. All rights reserved.

  9. Development and Implementation of Tele-Savvy for Dementia Caregivers: A Department of Veterans Affairs Clinical Demonstration Project.

    PubMed

    Griffiths, Patricia C; Whitney, M Kate; Kovaleva, Mariya; Hepburn, Kenneth

    2016-02-01

    To test fidelity and preliminary efficacy of Tele-Savvy, an internet-based version of the in-person, evidence-based psychoeducation Savvy Caregiver Program (SCP) for dementia caregivers. Tele-Savvy used synchronous (tele-conferences) and asynchronous components (video modules) to provide program access to caregivers in their homes. SCP experts were surveyed to evaluate Tele-Savvy's fidelity to SCP. A convenience sample of 30 dementia caregivers from the Atlanta VA Medical Center enrolled in the Tele-Savvy clinical demonstration program. Twenty-two caregivers completed both pre- and postprogram evaluations, which included measures of caregiver stress and competence and behavioral and psychological symptoms of dementia (BPSD). Expert review confirmed Tele-Savvy's fidelity with and, in certain domains, improvement on the original. Participants demonstrated moderately high initial levels of burden, anxiety, and depressive symptoms all of which decreased significantly postprogram in an intention to treat analysis. Similar reductions were seen in care recipients' BPSD and caregivers' reactions to them. Marginally significant increases in caregiver competence were observed. Caregiver and expert panel evaluations of program quality were enthusiastic. An effective online caregiver psychoeducation program could provide greatly expanded access for caregivers who cannot attend in person for reasons of distance, transportation limitations, and caregiving responsibilities. Further testing in a controlled trial is needed to establish program efficacy. Published by Oxford University Press on behalf of the Gerontological Society of America 2015.

  10. Misperceptions of medicaid ineligibility persist among African American caregivers of Alzheimer's dementia care recipients.

    PubMed

    Kingsberry, Sheridan Quarless; Mindler, Philinda

    2012-06-01

    African American caregivers of the elderly, including those who care for patients with Alzheimer's and other forms of dementia, remain underserved by Medicaid Assistance Programs. The purpose of this exploratory study was to ascertain to what degree participants in an Alzheimer's Association program that primarily targeted African Americans applied for and received Medicaid assistance, in particular for adult day care, in-home care, and respite care. Secondary data from the Delaware Regional Office of the Alzheimer's Association's 2006 Caregiver Survey of 38 caregivers were reviewed using descriptive, chi-square, and logistic regression analysis. Results indicate that 20 caregivers applied for Medicaid services, 12 of whom were approved. However, 18 caregivers did not apply for Medicaid mainly because they perceived that they would not qualify for benefits, without investigating their eligibility. Clearly more education is needed in African American communities about the eligibility requirements and benefits of Medicaid Assistance Programs because services such as adult day care, in-home care, and respite care have been shown to reduce some of the burden, stress, and strain associated with caring for elderly patients with Alzheimer's dementia. However, a multisystem approach should be used in the outreach and education processes. Finally, the Medicaid application process should be streamlined to make it less cumbersome. More financial and support services are needed by African American caregivers of Alzheimer's care recipients.

  11. Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis.

    PubMed

    Acton, G J; Kang, J

    2001-10-01

    Because of conflicting results, in order to clarify the state of the science it was necessary to do a systematic analysis of the literature on research testing the effect of interventions on the burden of persons caring for family members with dementia. The purpose of this study was to evaluate, using meta-analytic techniques, those intervention strategies (support group, education, psychoeducation, counseling, respite care, and multicomponent) designed to help caregivers cope with the burden of caregiving. Using meta-analytic methods developed by Glass, McGraw, and Smith (1981) and Hedges and Olkin (1985), 24 published research reports testing 27 treatments for caregivers of adults with dementia were synthesized. Overall, the analysis showed that collectively the interventions had no effect on caregiver burden. Only the category of multicomponent interventions significantly reduced caregiver burden. Burden may be too global an outcome to be affected consistently by intervention. Better and more precise measures are needed to evaluate the effects of caregiver interventions properly. Copyright 2001 John Wiley & Sons, Inc.

  12. Emotional and instrumental support influencing male caregivers for people with dementia living at home.

    PubMed

    Nishio, Midori; Kimura, Hiromi; Ogomori, Koji; Ogata, Kumiko

    2017-05-01

    Object: To clarify the emotional and instrumental support influencing male caregivers for people with dementia living at home. Patients/Materials and Methods: The subjects were 298 male caregivers. Nursing care burden was assessed using the Zarit Caregiver Burden Scale. Ability to cope with care problems was assessed using the Nursing Care Problems Coping Scale for Male Caregivers for People with Dementia Living at Home (NCSM). Emotional support was assessed using the Emotional Support Network Scale. Instrumental support was assessed using the question "Do you have someone to help when you have a problem with nursing care?". Results: There was a significant correlation (P < 0.04) between the point (index) of NCSM and Zarit Caregiver Burden Scale. A positive significant correlation was found in three coping styles. A negative significant correlation was found in one coping style, and no significant correlation in one coping style. The 'Solve the problem' coping style was linked to support from both within and beyond the family. Both 'Emotional avoidance' and 'Cognitive transformation' coping styles were linked to support from within the family, and "Request assistance" style only to external support. There were no correlations between the source of support and the "Careful supervision and waiting" coping style. Conclusion: Emotional and instrumental support for male caregivers was more than three times more likely to be obtained from within the family than outside it. With families becoming smaller, it is becoming more important for communities and society in general to provide emotional and instrumental support for male caregivers. Male caregivers need support from someone with whom they feel comfortable. It is particularly necessary to consider how to support male caregivers who use the "Emotional avoidance" coping style.

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

    PubMed

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

    2012-12-01

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

  14. Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial.

    PubMed

    Blom, Marco M; Zarit, Steven H; Groot Zwaaftink, Rob B M; Cuijpers, Pim; Pot, Anne Margriet

    2015-01-01

    The World Health Organization stresses the importance of accessible and (cost)effective caregiver support, given the expected increase in the number of people with dementia and the detrimental impact on the mental health of family caregivers. This study assessed the effectiveness of the Internet intervention 'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at baseline, were randomly assigned to two groups. Caregivers in the experimental group (N = 149) were compared to caregivers who received a minimal intervention consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety and Depression Scale: HADS-A). All data were collected via the Internet, and an intention-to-treat analysis was carried out. Almost all caregivers were spouses or children (in-law). They were predominantly female and lived with the care recipient in the same household. Age of the caregivers varied from 26 to 87 years. Level of education varied from primary school to university, with almost half of them holding a bachelor's degree or higher. Regression analyses showed that caregivers in the experimental group showed significantly lower symptoms of depression (p = .034) and anxiety (p = .007) post intervention after adjustment for baseline differences in the primary outcome scores and the functional status of the patients with dementia. Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive symptoms (.26). The Internet course 'Mastery over Dementia' offers an effective treatment for family caregivers of people with dementia reducing symptoms of depression and anxiety. The results of this study justify further development of Internet interventions for family caregivers of people with dementia and suggest that such interventions are promising for keeping support for family caregivers accessible and affordable. The findings are even more promising

  15. Gain in Alzheimer care INstrument--a new scale to measure caregiving gains in dementia.

    PubMed

    Yap, Philip; Luo, Nan; Ng, Wai Yee; Chionh, Hui Ling; Lim, June; Goh, Jenny

    2010-01-01

    To describe and validate a new scale, Gain in Alzheimer care Instrument (GAIN), and to measure gains in dementia caregiving. Items in GAIN were derived through a qualitative study of family carers of persons with dementia (PWD). Content validity of GAIN was established by a team of dementia care experts (geriatrician, nurse, and social worker) and through focus group discussion with 15 family carers. Consecutive carers of PWD were administered a questionnaire containing GAIN and other measures. Ambulatory dementia clinic of a tertiary hospital and the local Alzheimer's Association. Family carers of PWD. The psychometric properties of GAIN were examined, in particular, exploratory factor analysis and construct validity through correlation with extant measures; Positive Aspects of Caregiving (PAC), Dementia Management Strategies Scale (DMSS), and Zarit Burden Interview (ZBI). Two hundred thirty-eight English-speaking carers completed the survey. Mean age of carers was 50.1 year (standard deviation [SD] 10.1) and females (68.1%) and child carers (81.3%) comprised the majority. Mean GAIN score was 30.5 (SD 6.5). Internal consistency of GAIN by Cronbach's alpha was 0.89 and test-retest reliability (2 weeks) by Intraclass Correlation Coefficient was 0.70. GAIN correlated strongly with PAC (r = 0.68, df = 236, p <0.0001), moderately with DMSS (encouragement) (r = 0.35, df = 234, p <0.0001) and DMSS (active management) (r = 0.42, df = 235, p <0.0001), and modestly with DMSS (criticism) (r = -0.14, df = 236, p = 0.03) and ZBI (r = -0.15, df = 236, p = 0.02). Principal component analysis revealed a single component with an Eigen value >1 at 5.28, accounting for 52.8% of the variance. GAIN is a psychometrically reliable and valid instrument for measuring gains in dementia caregiving. It adds an important dimension to carer assessment in dementia.

  16. Training programmes for family caregivers of people with dementia living at home: integrative review.

    PubMed

    Sousa, Lia; Sequeira, Carlos; Ferré-Grau, Carme; Neves, Pedro; Lleixà-Fortuño, Mar

    2016-10-01

    To establish primary features of training programmes designed to assist family caregivers of people with dementia living at home and to propose a model programme based on literature findings. Due to dementia's distinctive progression, there is a widely felt need to train family members who undertake the responsibility of caring for relatives diagnosed with this condition to provide positive care, particularly during the early and middle stages of the disease. Integrative review. Literature reviews were carried out in the Pubmed, CINAHL, Mediclatina and Medline databases, using the following describers: training programme, family caregivers, dementia and aged. Such searches encompassed publications between 2004-2014, together with eight articles for review due to their positive identification with the inclusion criteria. Relevant results were extracted, the subsequent analysis performed and the presentation carried out in a descriptive manner. The prevailing length of a training programme for a family caregiver of people with dementia is of six sessions over a six-week period, with one weekly session load, and an average duration of 100 minutes each. Methodologies most commonly used include discussion, problem-solving models as well as skills and strategies training. The themes discussed comprehend caring for the individual with dementia, information about the illness and the use of health and community resources. Regarding the assessment of the family caregiver, the most widely used instruments are demographic assessment questionnaires, self-efficiency and caregiver's burnout scales, as well as depression and quality of life measures. Three assessment instances of family caregivers' needs during the training programme are commonly encountered: initial, final and follow-up. This review has identified a set of features transversal to training programmes for family members who undertake the care for individuals with dementia living at home, which will bolster the

  17. The subjective feeling of burden in caregivers of elderly with dementia: how to intervene?

    PubMed

    Luchetti, L; Uhunmwangho, E; Dordoni, G; Lorido, A; Barbieri, S; Bolognesi, A G; Gobbi, G; Franchi, F

    2009-01-01

    The aim of this study was to know how caregiver burden was influenced by caregivers' and patients' characteristics and by social support; the intention was to use these elements in order to suggest how to optimize the interventions which may reduce caregivers' subjective feeling of burden. A sample of 99 caregivers was studied using a descriptive-correlational design. Caregiver burden was assessed by using the caregiver burden inventory (CBI). The burden was due to restrictions on their personal time and to the sense of failure regarding their hopes and expectations. These results suggest that it could be useful to intervene in two ways. On one hand, improving all those interventions targeted to reduce restrictions on the personal caregivers' time, making respite care and day care units more accessible to elderly with dementia. On the other hand, giving caregivers the opportunity to benefit from interventions oriented to cope the sense of failure and the physical stress, to say, individual counseling or continued informal support.

  18. Psychological well-being over time among informal caregivers caring for persons with dementia living at home.

    PubMed

    Lethin, Connie; Renom-Guiteras, Anna; Zwakhalen, Sandra; Soto-Martin, Maria; Saks, Kai; Zabalegui, Adelaida; Challis, David J; Nilsson, Christer; Karlsson, Staffan

    2017-11-01

    To investigate informal caregivers' psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors. A cohort study at baseline and 3 months' follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed. Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers' increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers' psychological well-being. Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers' psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers' psychological well-being, and provide proper care and treatment for caregivers and PwDs.

  19. Caregivers' understanding of dementia predicts patients' comfort at death: a prospective observational study.

    PubMed

    van der Steen, Jenny T; Onwuteaka-Philipsen, Bregje D; Knol, Dirk L; Ribbe, Miel W; Deliens, Luc

    2013-04-11

    Patients with dementia frequently do not receive adequate palliative care which may relate to poor understanding of the natural course of dementia. We hypothesized that understanding that dementia is a progressive and terminal disease is fundamental to a focus on comfort in dementia, and examined how family and professional caregivers' understanding of the nature of the disease was associated with patients' comfort during the dying process. We enrolled 372 nursing home patients from 28 facilities in The Netherlands in a prospective observational study (2007 to 2010). We studied both the families and the physicians (73) of 161 patients. Understanding referred to families' comprehension of complications, prognosis, having been counseled on these, and perception of dementia as "a disease you can die from" (5-point agreement scale) at baseline. Physicians reported on this perception, prognosis and having counseled on this. Staff-assessed comfort with the End-of-Life in Dementia - Comfort Assessment in Dying (EOLD-CAD) scale. Associations between understanding and comfort were assessed with generalized estimating equations, structural equation modeling, and mediator analyses. A family's perception of dementia as "a disease you can die from" predicted higher patient comfort during the dying process (adjusted coefficient -0.8, 95% confidence interval (CI): -1.5; -0.06 point increment disagreement). Family and physician combined perceptions (-0.9, CI: -1.5; -0.2; 9-point scale) were also predictive, including in less advanced dementia. Forty-three percent of the families perceived dementia as a disease you can die from (agreed completely, partly); 94% of physicians did. The association between combined perception and higher comfort was mediated by the families' reporting of a good relationship with the patient and physicians' perception that good care was provided in the last week. Awareness of the terminal nature of dementia may improve patient comfort at the end of life

  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. 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. Copyright 2004 Wiley Periodicals, Inc.

  2. Ethnie Differences in Beliefs Regarding Alzheimer Disease Among Dementia Family Caregivers

    PubMed Central

    Gray, Heather L.; Jimenez, Daniel E.; Cucciare, Michael A.; Tong, Hui-Qi; Gallagher-Thompson, Dolores

    2014-01-01

    Objective The purpose of this study was to examine ethnic differences in female dementia family caregivers’ knowledge, attitudes, and beliefs about Alzheimer disease (AD). Methods Baseline data were collected from 215 female caregivers before their participation in various psychoeducational intervention programs. Caregivers were questioned about the epidemiology, etiology, and treatment of AD. Logistic regressions and one-way analysis of variance were conducted to assess ethnic differences. Results Hispanic and Chinese caregivers were more likely to believe that AD is a normal part of aging and that AD can be diagnosed by a blood test than the white group. These beliefs about AD may delay help-seeking activities for these patients and their family caregivers. Conclusion Increased public education about AD is needed in these communities. Results are discussed in terms of barriers to accessing information about AD and ways to improve public informational outreach activities, so that the intended audiences are reached more effectively. PMID:20104051

  3. 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.

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

    PubMed Central

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

    2011-01-01

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

  5. Anxiety in family caregivers of hospitalized persons with dementia: contributing factors and responses.

    PubMed

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

    2015-01-01

    Baseline health and functional vulnerabilities increase the risk for complications in persons with dementia and predispose family caregivers (FCGs) to increased stress. This secondary analysis used a combined quantitative and qualitative approach. Regression analyses examined the contribution of patient and FCG characteristics to FCG anxiety. Interviews with FCGs explored the experiences and responses of FCGs during hospitalization of their family member with dementia. Lower patient physical function and higher caregiver strain were associated with higher FCG anxiety. FCGs described the following themes related to the hospitalization: (1) added strain, (2) care-related worries, (3) keeping vigil, (4) need to be heard, and (5) enablers of FCGs. Routine evaluation of caregiver strain and baseline patient function is integral to informing the transitional planning for persons with dementia. The FCG responses suggest that a multifactorial approach (family-centered policies of partnership in care, staff education addressing the specialized needs of patients and family members, and attention to promoting functional recovery) may benefit both hospitalized patients with dementia as well as FCGs and warrants future research.

  6. Stress and burden among caregivers of patients with Lewy body dementia.

    PubMed

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

    2011-02-01

    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 problems are likely to affect caregivers' subjective burden. The present study used data from an Internet survey conducted by the Lewy Body Dementia Association. Respondents were 611 people who indicated that they were currently involved in the care of their relative with LBD. Subjective burden was assessed with a 12-item short version of the Zarit Burden Interview. A factor analysis revealed 3 dimensions of burden: role strain, personal strain, and worry about performance. Multiple regressions were used to examine predictors of these dimensions. BEPs, ADL disability, isolation, caregiver age, and patient gender were significant predictors of specific factors. Falls, formal service use, difficulty finding a physician, and evaluation of the physician had no significant associations with burden. These findings highlight burden experiences by caregivers of patients with LBD and the impact of BEPs, ADL assistance, and awareness about LBD on subjective burden.

  7. Challenges to optimal medicines use in people living with dementia and their caregivers: A literature review.

    PubMed

    Alsaeed, Dalal; Jamieson, Elizabeth; Gul, Mine Orlu; Smith, Felicity J

    2016-10-30

    Dementia is fast becoming a global concern due to a demographic shift towards an older population. Many studies have shown that caring for a family member or friend has a profound and negative impact on the physical, emotional and psychosocial aspects of the caregivers' life. One significant activity that a family caregiver undertakes is assistance with the management of medicines. This review was undertaken to ascertain what the issues are that affect optimal medicines use from the perspectives of people living with dementia and their caregivers, both in the community and care home settings. A literature search was conducted using electronic databases, employing a combination of search terms. A total of 16 studies met the inclusion criteria. Six broad themes were identified, together with some recommendations to improve medicines use in people with dementia. Challenges to medicines use centred on medicines management and administration, the impact on the caregiver and care recipient, their partnership and interface with formal care. Future research should focus on developing targeted interventions that can overcome these challenges to achieve optimal medicines use. Copyright © 2015 Elsevier B.V. All rights reserved.

  8. 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

  9. Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore.

    PubMed

    Basnyat, Iccha; Chang, Leanne

    2017-09-01

    In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers' relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.

  10. The effects of behavioral and psychological symptoms on caregiver burden in frontotemporal dementia, Lewy body dementia, and Alzheimer's disease: clinical experience in China.

    PubMed

    Liu, Shuling; Jin, Yi; Shi, Zhihong; Huo, Ya Ruth; Guan, Yalin; Liu, Mengyuan; Liu, Shuai; Ji, Yong

    2017-06-01

    Caregivers of individuals with neurodegenerative diseases, including frontotemporal dementia (FTD), Lewy body dementia (DLB), and Alzheimer's disease (AD), experience high levels of psychological and physical stress, likely due to behavioral and psychological symptoms of dementia (BPSD). This study is the first to simultaneously evaluate the effects of BPSD on caregiver burden in these three types of dementia. A total of 214 dementia patients, including probable FTD (n = 82), DLB (n = 22), and AD (n = 110), as well as their primary caregivers, were assessed using psychological inventories and cognitive evaluation. The FTD group was further divided into the three established clinical variants: behavioral variant frontotemporal dementia (bvFTD, n = 51), non-fluent variant primary progressive aphasia (nfvPPA, n = 15), and semantic variant primary progressive aphasia (svPPA, n = 16). Cognitive impairment and neuropsychiatric symptoms were assessed using the Mini Mental State Examination, Montreal Cognitive Assessment, Clock Drawing Test, and Neuropsychiatric Inventory (NPI), respectively. Caregiver burden was assessed using the Zarit Burden Inventory (ZBI). FTD patients had higher NPI and ZBI scores than DLB and AD patients, whose scores were similar. Logistic regression analysis revealed that the factors influencing caregiver burden for each group were: FTD: total NPI scores, agitation, and aberrant motor behavior; bvFTD: total NPI scores; DLB: total NPI scores; and AD: total NPI scores, onset age, apathy, and ADL. Caregivers of bvFTD patients had the highest levels of burden, which were significantly greater than for caregivers of nfvPPA, svPPA, DLB, and AD patients. BPSD was highly correlated with emotional burden in caregivers of FTD, DLB, and AD patients. The highest burden was observed in bvFTD caregivers.

  11. The Savvy Caregiver Program: Developing and Testing a Transportable Dementia Family Caregiver Training Program

    ERIC Educational Resources Information Center

    Hepburn, Kenneth W.; Lewis, Marsha; Sherman, Carey Wexler; Tornatore, Jane

    2003-01-01

    Purpose: This article reports on the development and field testing of the Savvy Caregiver Program, the transformation of a successful, academic-based caregiver psychoeducational program into a self-contained program that can be adopted in other locations. Design and Methods: Program development began with a prototype of a 12-hr course with the…

  12. Sudden-On-Chronic Death and Complicated Grief in Bereaved Dementia Caregivers: Two Case Studies of Complicated Grief Group Therapy.

    PubMed

    Supiano, Katherine P; Andersen, Troy C; Haynes, Lara Burns

    2015-01-01

    Caring for a person with Alzheimer's disease is challenging and often has negative health and mental health effects that, for 7-20% of caregivers, persist into bereavement in the form of complicated grief. Complicated grief is a state of prolonged and ineffective mourning. An under-recognized phenomenon in dementia care and bereavement is "sudden-on-chronic death." In these situations, the caregiver is preparing for a gradual dying process from dementia, but the care recipient dies instead from a sudden death. In this study, an application of complicated grief group therapy for bereaved dementia caregivers with complicated grief is presented, and the effect of therapy with two bereaved caregivers who experienced the sudden death of their spouses who had a diagnosis of dementia is described. The unique treatment elements of complicated grief group therapy facilitated resolution of the 'trauma-like" features of bereavement and progression to a healthy grief process.

  13. The influence of day care centres designed for people with dementia on family caregivers - a qualitative study.

    PubMed

    Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork

    2017-01-05

    Dementia is one of the most challenging age-related illnesses for family caregivers, whose care-related burden is well known. Research indicates that day care centres (DCCs) can reduce the caregiver burden and help family caregivers to cope with demands; however, the current body of knowledge is still tentative and inconsistent, and more research is recommended. The aim of this study is to provide an extended understanding of the situation of family caregivers and to examine to what extent DCCs can meet their need for support and respite. This study has a qualitative descriptive design using in-depth interviews with 17 family caregivers of people with dementia attending DCCs. The data analysis was undertaken using systematic text condensation. Caregivers experience a complex role, with added responsibilities, new tasks, and emotional and relational challenges that are expressed through distressing emotions and demands for interaction. Additionally, the caregiving role leads to positive experiences, such as acceptance and adaptation, support and help, and positive changes in the relationship. Day care relieves family caregivers by meeting the person with dementia's needs for social community, nutrition, physical activity, and structure and variety in everyday life. Using a DCC led to a higher quality of time spent together and easier cooperation, but it also produced some hard feelings and challenging situations. DCCs gave the caregivers a feeling of freedom and increased the time available to be spent on their own needs, to be social and to work or do practical tasks undisturbed. DCCs for people with dementia can give family caregivers support and relief and have a positive impact on the relationship between the family caregiver and the person with dementia. A more individualized program, in addition to flexible opening hours, would make DCCs even more effective as a respite service, positively influencing the family caregiver's motivation and ability to care and

  14. African American Dementia Caregiver Problem Inventory: Descriptive analysis and initial psychometric evaluation.

    PubMed

    Wells, Brittny A; Glueckauf, Robert L; Bernabe, Daniel; Kazmer, Michelle M; Schettini, Gabriel; Springer, Jane; Sharma, Dinesh; Meng, Hongdao; Willis, Floyd B; Graff-Radford, Neill

    2017-02-01

    The primary objectives of the present study were: (a) to develop the African American Dementia Caregiver Problem Inventory (DCPI-A) that assesses the types and frequency of problems reported by African American dementia caregivers seeking cognitive-behavioral intervention, (b) to evaluate the intercoder reliability of the DCPI-A, and (c) to measure the perceived severity of common problems reported by this caregiver population. The development of the DCPI-A was divided into 3 major steps: (a) creating an initial sample pool of caregiver problems derived from 2 parent randomized clinical trials, (b) formulating a preliminary version of the DCPI-A, and (c) finalizing the development of the DCPI-A that includes 20 problem categories with explicit coding rules, definitions, and illustrative examples. The most commonly reported caregiver problems fell into 5 major categories: (a) communication problems with care recipients, family members, and/or significant others, (b) problems with socialization, recreation, and personal enhancement time; (c) problems with physical health and health maintenance, (d) problems in managing care recipients' activities of daily living; and (e) problems with care recipients' difficult behaviors. Intercoder reliability was moderately high for both percent agreement and Cronbach's kappa. A similar positive pattern of results was obtained for the analysis of coder drift. The descriptive analysis of the types and frequency of problems of African American dementia caregivers coupled with the outcomes of the psychometric evaluation bode well for the adoption of the DCPI-A in clinical settings. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

  15. Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review.

    PubMed

    Vandepitte, Sophie; Van Den Noortgate, Nele; Putman, Koen; Verhaeghe, Sofie; Verdonck, Caroline; Annemans, Lieven

    2016-12-01

    Supporting informal caregivers of persons with dementia is considered to be an effective strategy for improving the well-being of caregivers and care recipients and for delaying nursing home placement. Although considerable research has been conducted to investigate the effectiveness of psychoeducational interventions, cognitive behavioral therapy, and occupational therapy, research into the effectiveness of respite care is rare. This systematic review aims to investigate the effectiveness of different types of respite care in supporting informal caregivers of persons with dementia. A systematic literature search was conducted using Web of Science and PubMed, and the Quality Assessment Tool for Quantitative Studies was used to assess the methodological quality. Randomized controlled trials, quasi-experimental studies, pretest-posttest studies without a control group, and cohort studies were included. Seventeen papers met the inclusion criteria. Day care services are effective in decreasing caregiver burden and behavioral problems in persons with dementia, but they also accelerate time to nursing home admission. The results of temporary residential admission are rather mixed and show unexpected adverse effects on both caregivers and care recipients. High-quality comparable evidence on community-based respite care is still lacking, although earlier qualitative evidence indicated promising results. Unlike in previous reviews, we were able to draw some conclusions about the effectiveness of some types of respite care. There is nonetheless still a need for new intervention studies measuring the impact of respite care, especially in-home respite care programs, on the caregiver, the care recipient, and health care resource utilization. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

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

    PubMed

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

    2016-12-01

    This study tested the effect of written emotional expression on the ability to find meaning in caregiving and the effects of finding meaning on emotional state and psychological burden in 91 dementia family caregivers. In a pretest-posttest design, participants were randomly assigned to either an experimental or a comparison group. Experimental caregivers (n = 57) wrote about their deepest thoughts and feelings about caring for a family member with dementia, whereas those in the comparison group (n = 34) wrote about nonemotional topics. Results showed enhanced meaning-making abilities in experimental participants relative to comparison participants, particularly for those who used more positive emotion words. Improved meaning-making ability was in turn associated with psychological benefits at posttest, but experimental participants did not show significantly more benefit than comparison participants. We explore the mediating roles of the meaning-making process as well as some of the background characteristics of the individual caregivers and their caregiving environments. © The Author(s) 2016.

  17. Stressors and anxiety in dementia caregiving: multiple mediation analysis of rumination, experiential avoidance, and leisure.

    PubMed

    Romero-Moreno, R; Losada, A; Márquez-González, M; Mausbach, B T

    2016-11-01

    Despite the robust associations between stressors and anxiety in dementia caregiving, there is a lack of research examining which factors contribute to explain this relationship. This study was designed to test a multiple mediation model of behavioral and psychological symptoms of dementia (BPSD) and anxiety that proposes higher levels of rumination and experiential avoidance and lower levels of leisure satisfaction as potential mediating variables. The sample consisted of 256 family caregivers. In order to test a simultaneously parallel multiple mediation model of the BPSD to anxiety pathway, a PROCESS method was used and bias-corrected and accelerated bootstrapping method was used to test confidence intervals. Higher levels of stressors significantly predicted anxiety. Greater stressors significantly predicted higher levels of rumination and experiential avoidance, and lower levels of leisure satisfaction. These three coping variables significantly predicted anxiety. Finally, rumination, experiential avoidance, and leisure satisfaction significantly mediated the link between stressors and anxiety. The explained variance for the final model was 47.09%. Significant contrasts were found between rumination and leisure satisfaction, with rumination being a significantly higher mediator. The results suggest that caregivers' experiential avoidance, rumination, and leisure satisfaction may function as mechanisms through which BPSD influence on caregivers' anxiety. Training caregivers in reducing their levels of experiential avoidance and rumination by techniques that foster their ability of acceptance of their negative internal experiences, and increase their level of leisure satisfaction, may be helpful to reduce their anxiety symptoms developed by stressors.

  18. An Online Platform to Support the Network of Caregivers of People with Dementia

    PubMed Central

    Duymelinck, Saskia; van Rossum, Erik

    2017-01-01

    Increasing numbers of persons with dementia (PWD) augment the pressure on dementia care, especially informal care. Care technology can support the network of PWD. We tested the usability and perceived value of an online platform that aims to support the communication and collaboration between family and professional caregivers of PWD. A mixed methods design was used for this pilot study, including semistructured interviews, a postal questionnaire, and monitoring of log data. Seven family and thirty-two professional caregivers involved with four PWD participated during a 10-week period. Overall, the results indicate that the platform is easy to use and valuable for both family and professional caregivers. They felt better informed and prepared regarding the situation of the PWD and felt supported by the more direct lines of communication within the network. Also, a broadening and deepening of the relationship between family and professional caregivers was experienced. Although connecting care organizations' record systems with the platform and an active contribution of all care professionals involved (e.g., general practitioners and those working at day care units) were suggested for optimal use of the platform, family and professional caregivers positively valued the platform for improving the efficiency and ease of communication and collaboration. PMID:28894609

  19. 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

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

    PubMed

    Sun, Fei; Ong, Rebecca; Burnette, Denise

    2012-02-01

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

  1. Heart coherence: a new tool in the management of stress on professionals and family caregivers of patients with dementia.

    PubMed

    Sarabia-Cobo, C M

    2015-06-01

    We describe a stress management intervention intended to reduce the damage and stress impact on the heart physiology and function of a group of caregivers (professional and non-professional) who work with patients with dementia. The intervention consisted in applying heart coherence techniques in a population of 72 caregivers of patients with dementia (42 professional and 29 non-professional caregivers) who had high scores in heart stress and burden tests. Six months after the training they were able to generate appropriate patterns of heart coherence, with a statistically significant decrease in their heart overload. We conclude that training in techniques of heart coherence and positive psychology had effective results on the stress management of the participant caregivers. This was a simple, inexpensive technique with lasting results. To our knowledge this is the first research in Spain studying the application of heart coherence techniques to caregivers of people with dementia.

  2. In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences.

    PubMed

    Peterson, Kendra; Hahn, Howard; Lee, Amber J; Madison, Catherine A; Atri, Alireza

    2016-09-23

    Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes. We interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources. These findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and

  3. Psychometric evaluation of a Spanish language version of the Screen for Caregiver Burden (SCB) in caregivers of patients with mixed, vascular and Alzheimer's dementia.

    PubMed

    Guerra-Silla, María G; Gutiérrez-Robledo, Luis M; Villalpando-Berumen, Juan M; Pérez-Zepeda, Mario U; Montaña-Álvarez, Mariano; Reyes-Guerrero, Jorge; Rosas-Carrasco, Óscar

    2011-12-01

    To validate a Spanish language version of the Screen for Caregiver Burden, the full-length or long (25-item) and short (seven-item) versions in Mexican caregivers of patients with mixed, vascular and Alzheimer's dementia. Patients with dementia display impaired executive function and neuropsychiatric symptoms such as behavioural changes and sleep disturbances. These symptoms can make patients become more dependent. The experience of caregiving for patients under these conditions is burdensome. It is important to detect this burden to protect both the caregiver and the patient from negative outcomes. Survey. Participants were 143 primary caregivers of patients with dementia and 30 caregivers of older adults without dementia in two hospitals in Mexico City. The internal reliability was Cronbach's α=0·89 and 0·82 for the 25-item and the seven-item versions, respectively. The item-total correlations for two Screen for Caregiver Burden versions were significant from r=0·26 to r=0·77 p<0·001. The test-retest was ICC=0·78 p<0·001; CI 95% (0·55-0·89) and ICC=0·72 p<0·001; CI 95% (0·41-0·86) for the 25-item and the seven-item, respectively. We found from non-significant to highly significant correlations between two Screen for Caregiver Burden versions and other measures ranged. Validity of known groups showed that the caregivers of demented patients experienced more burden than those caring for non-demented patients. Given these psychometric properties, both versions of the Screen for Caregiver Burden are valid tools and can be reliably used to assess the presence and level of caregiver burden in caregivers of demented patients. The Screen for Caregiver Burden in the Spanish Language can be used in clinical practice to detect caregiver burden in family members. We recommend using the long or full-length version when the objective is to assess the caregiver burden carefully and the short version (seven-item) as a screening method of caregiver burden that

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

    PubMed

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

    2013-05-01

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

  5. Mental health and morbidity of caregivers and co-residents of individuals with dementia: a quasi-experimental design.

    PubMed

    Maguire, Aideen; Rosato, Michael; O'Reilly, Dermot

    2017-10-01

    To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared with co-resident non-caregivers. A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms provides a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms. Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared with co-resident non-caregivers, adjusting for the clustering of individuals within households. The cohort consisted of 10 982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared with 8.4% of intense caregivers (>20 h of care per week). During follow-up, the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents (adjusted odds ratio (ORadj) = 0.93, 95% confidence interval (CI) 0.79, 1.10 and ORadj = 0.67, 95% CI 0.56, 0.81, respectively); this lower mortality risk was also seen amongst the most intensive caregivers (ORadj = 0.65, 95% CI 0.53, 0.79). Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia and is associated with a lower mortality risk compared with non-caregiving co-residents. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

  6. Sleep in dementia and caregiving--assessment and treatment implications: a review.

    PubMed

    Lee, David R; Thomas, Alan J

    2011-03-01

    The increasing prevalence of dementia will precipitate a significant burden in terms of the costs of caring for people with dementia over the next 30 years; sleep disturbances in dementia are an important factor contributing to this burden. We reviewed sleep disturbances in people with dementia and their carers and describe the various diagnostic, assessment and treatment strategies available to physicians in the management of this clinically significant problem. Sleep disturbances in people with dementia and their carers (i) are highly prevalent; (ii) impact significantly on quality of life of both people with dementia and their carers; (iii) increase the rate of cognitive decline; and (iv) accelerate the breakdown of community-based care. The training of physicians in the assessment and treatment of sleep disturbances in dementia and caregiving is scant despite a wide range of assessment strategies and treatment approaches, which comprise both pharmacological (including hypnotic/sedative medications) and non-pharmacological approaches (including: environmental; psychobehavioral; exercise and activity; and multi-component interventions). Specific diagnostic criteria for sleep disturbances in people with dementia and their carers remain lacking despite established criteria for general insomnia. Further to this, proposed changes to diagnostic criteria for DSM-V do not include a specific focus for the diagnosis and management of sleep disturbances in people with dementia or their carers. This review suggests that the improved training of physicians to meet the needs of these vulnerable groups of older people is a priority, especially in the context of a rapidly increasing demand for accurate, early diagnosis and efficient management of sleep disturbance in these groups.

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

    ERIC Educational Resources Information Center

    Stephens, Mary Ann Parris; And Others

    1991-01-01

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

  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. Family Caregiving and Marital Satisfaction: Findings from a 1-Year Panel Study of Women Caring for Parents with Dementia.

    ERIC Educational Resources Information Center

    Suitor, J. Jill; Pillemer, Karl

    1994-01-01

    Describes investigation examining effects of caring for elderly parent with dementia on marital satisfaction. Suggests changes in women's marital satisfaction were associated with variations in husbands' emotional support and hindrance of caregiving effort which were affected by perceptions that caregiving interfered with wives' performance of…

  10. The Meanings African American Caregivers Ascribe to Dementia-Related Changes: The Paradox of Hanging on to Loss.

    PubMed

    Lindauer, Allison; Harvath, Theresa A; Berry, Patricia H; Wros, Peggy

    2016-08-01

    Using an interpretive phenomenological approach, this study explored the meaning African American (AA) caregivers ascribed to the dementia-related changes in their care-recipients. Data were gathered in this qualitative study with 22 in-depth interviews. Eleven AA caregivers for persons with dementia, living in the Pacific Northwestern United States, were interviewed twice. Four caregivers participated in an optional observation session. Analysis based on the hermeneutic circle revealed that, for these caregivers, the dementia-related changes meant that they had to hang on to the care-recipients for as long as possible. Caregivers recognized that the valued care-recipients were changed, but still here and worthy of respect and compassion. Ancestral family values, shaped by historical oppression, appeared to influence these meanings. The results from this study suggest that AA caregivers tend to focus on the aspects of the care-recipients' personalities that remain, rather than grieve the dementia-related losses. These findings have the potential to deepen gerontologists' understanding of the AA caregiver experience. This, in turn, can facilitate effective caregiver decision making and coping. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  11. 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.…

  12. [Problems in the process of adapting to change among the family caregivers of elderly people with dementia].

    PubMed

    Moreno-Cámara, Sara; Palomino-Moral, Pedro Ángel; Moral-Fernández, Lourdes; Frías-Osuna, Antonio; Del-Pino-Casado, Rafael

    2016-01-01

    To identify and analyse problems in adapting to change among the family caregivers of relatives with dementia. Qualitative study based on the methodology of Charmaz's Constructivist Grounded Theory. Seven focus groups were conducted in different primary health care centres in the province of Jaen (Spain). Eighty-two primary family caregivers of relatives with dementia participated by purposeful maximum variation sampling and theoretical sampling. Triangulation analysis was carried out to increase internal validity. We obtained three main categories: 'Changing Care', 'Problems in the process of adapting to change' and 'Facilitators of the process of adapting to change'. Family caregivers perform their role in a context characterized by personal change, both in the person receiving the care and in the social and cultural context. The challenge of adaptation lies in the balance between the problems that hamper adaptation of the caregiver to new situations of care and the factors that facilitate the caregiver role. The adaptation of family caregivers to caring for a person with dementia is hindered by the lack of formal support and under-diagnosis of dementia. The adaptation process could be improved by strengthening formal support in the early stages of care to reduce the stress of family caregivers who must teach themselves about their task and by interventions adapted to each phase in the development of the caregiver role. Copyright © 2016 SESPAS. Published by Elsevier Espana. All rights reserved.

  13. Caregiving for a loved one with dementia at the end of life: an emergent theory of rediscovering.

    PubMed

    Lewis, Laura Foran

    2015-08-01

    Millions face the challenges of caregiving for a loved one with dementia. A classic Glaserian grounded theory methodology was used to discover the problem that caregivers of individuals with dementia face at the end of life and how they attempt to resolve that problem. Data were collected from a theoretical sample of 101 participants through in-person interviews, online interviews, book and blog memoirs of caregivers, and participant observation. Constant comparative method revealed a basic social psychological problem of role entrapment. Caregivers attempt to resolve this problem through a 5-stage basic social psychological process of rediscovering including missing the past, sacrificing self, yearning for escape, reclaiming identity, and finding joy. Health care professionals can support caregivers through this journey by validating, preparing caregivers for future stages, and encouraging natural coping strategies identified in this process. This study provides a substantive theory that may serve as a framework for future studies. © The Author(s) 2014.

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

    PubMed Central

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

    2016-01-01

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

  15. Caregiver burden and fatigue in caregivers of people with dementia: Measuring human herpesvirus (HHV)-6 and -7 DNA levels in saliva.

    PubMed

    Osaki, Tohmi; Morikawa, Takako; Kajita, Hiroyuki; Kobayashi, Nobuyuki; Kondo, Kazuhiro; Maeda, Kiyoshi

    2016-01-01

    We examined chronic fatigue, which has not been investigated in detail, in family caregivers for people with dementia. Forty-four community-dwelling family caregivers (the caregiver group: CG) and 50 elderly control participants (the non-caregiver group: NCG) participated in this study. We measured salivary human herpesvirus (HHV)-6 and -7 DNA levels and the Chalder fatigue scale (CFS) to assess levels of fatigue; we also measured the Center for Epidemiologic Studies-Depression Scale, Physical Activity Scale for the Elderly, Zarit Caregiver Burden Interview, Mini-Mental State Examination, Assessment of Motor and Process Skills, and Dementia Behavior Disturbance Scale. For CG, the salivary HHV-6 DNA levels and CFS scores were significantly higher than those in NCG. The salivary HHV-6 DNA levels in CG were significantly correlated with depressive symptoms, the cognitive function of the patients, and the activities of daily living/instrumental activities of daily living (ADL/IADL) abilities of the patients. The CFS scores in CG significantly correlated with caregiver burden, depression symptoms, leisure physical activity, the number of other family caregivers, and the hours spent for caregiving per week, as well as with behavior disturbances and ADL/IADL abilities. The salivary HHV-6 DNA levels may be added as a new biomarker for caregiver exhaustion. We concluded that fatigue assessments should be performed by not only a questionnaire, such as the CFS, but also by a biomarker search, such as HHV-6, when estimating the caregiver burden for family caregivers of people with dementia. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

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

    PubMed Central

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

    2011-01-01

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

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

    PubMed

    Moon, Heehyul; Adams, Kathryn Betts

    2013-11-01

    The need for dyadic intervention is enhanced with increasing numbers of older adults with early-stage dementia. The purpose of this paper is to review the effects of dyadic interventions on caregivers (CGs) and care recipients (CRs) at the early stage of dementia. Four databases, AgeLine, Medline, EBSCO, and PyscINFO were searched and relevant literature from 2000 onwards was reviewed. The twelve studies identified used a variety of intervention approaches including support group, counseling, cognitive stimulation, skill training, and notebook-keeping. This review suggests that intervention programs for early-stage dementia caregiving dyads were feasible and well accepted by participants. The reviewed studies provided rich evidence of the significance of mutual understanding and communication to partners' well-being and relationship quality within the caregiving process. The findings suggest that these intervention approaches improved cognitive function of the CRs, social relations, and the relationship between the primary CG and the CR, although evidence of long-term effectiveness is lacking.

  18. A Chronic Grief Intervention for Dementia Family Caregivers in Long-Term Care

    PubMed Central

    Paun, Olimpia; Farran, Carol J.; Fogg, Louis; Loukissa, Dimitra; Thomas, Peggy E.; Hoyem, Ruby

    2017-01-01

    Dementia caregivers do not relinquish their role after placing family members in long-term care and they experience increased chronic grief. The Chronic Grief Management Intervention (CGMI) is a12-week group-based program that uses guided discussion to deliver knowledge of Alzheimer’s or a related dementia and teach skills in communication, conflict resolution, and chronic grief management in dementia caregivers who placed their family members in long-term care. Using a quasi-experimental design, 83 caregivers from 15 long-term care facilities received either the CGMI (n = 34) or a comparison condition consisting of two check-in calls (n = 49). In this pilot study, we examined the feasibility of implementing the CGMI and evaluated the effects of the intervention on caregivers’ knowledge and skill and their chronic grief and depression. The intervention was feasible and resulted in significant improvement in caregivers’ heartfelt sadness and longing at 3 months and a significant drop in their guilt at the 6-month follow-up. PMID:24510968

  19. Values and Preferences of Individuals With Dementia: Perceptions of Family Caregivers Over Time

    PubMed Central

    Reamy, Allison M.

    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 care. However, research has yet to address how caregivers’ perceptions of IWDs’ values and preferences change over time and how change is related to caregivers’ well-being. Design and Methods: The sample includes 198 dyads of an individual with mild-to-moderate dementia and a spouse or child providing assistance. Linear growth curve modeling was applied to investigate how caregivers’ perceptions of importance of IWDs’ values and preferences in daily care change over 4 years and the factors associated with change. Results: Caregivers’ perceived importance of IWDs’ values and preferences significantly decreased over time, with significant between-person differences in level and slope. Between-person differences in level were associated with caregivers’ beliefs about care, IWDs’ self-reported importance of values and preferences at baseline, and kin relationship. Changes in caregivers’ reports of importance covaried with caregivers’ own quality of life over time. Implications: Findings suggest that caregivers increasingly de-emphasize the importance of values held by their IWDs. Although creating this emotional distance may be adaptive, caregivers may become increasingly unable to make decisions that effectively represent IWDs’ own preferences. PMID:22899426

  20. Coherence of mind in daughter caregivers of mothers with dementia: links with their mothers' joy and relatedness on reunion in a strange situation.

    PubMed

    Steele, Howard; Phibbs, Emily; Woods, Robert T

    2004-12-01

    This paper reports on a small sample (n = 17) of daughter caregivers of mothers with dementia who were interviewed with the Adult Attachment Interview, while their mothers stayed in an adjoining university room. Daughters were then reunited with their mothers, after a one-hour separation. Joyful and related 'secure' maternal behaviors, including proximity seeking, contact maintaining and overall responsiveness, were positively correlated with coherence of mind, and coherence of transcript ratings derived from the daughters' AAIs. Controlling for the severity of dementia in the mothers did not alter the power of these associations. Discussion addresses the lifelong significance of reunion behavior, the survival of 'secure' attachment behavior even into the late stages of dementia, and the clinical relevance of the Adult Attachment Interview.

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

    PubMed Central

    2014-01-01

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

  2. Behavioral Symptoms of Dementia: A Dyadic Effect of Caregivers' Stress Process?

    PubMed Central

    McGee Campbell, J. L.; Rowe, M. A.; Marsiske, M.

    2010-01-01

    This study utilized multilevel modeling to evaluate a newly revised model wherein dementia caregivers' (CGs') stress process variables, perceived stress and emotional-behavioral responses, were posited as predictors of behavioral symptoms of dementia (BSD) within community-based dyads. Secondary analyses were conducted on data from a primary two-group (experimental and control) trial, in which experimental subjects received a home monitoring system for managing nighttime activity in persons with dementia (PWD). Models indicated that CGs' trajectories did not differ significantly between groups over time; however, the time by group interaction of BSD approached significance. Since BSD were not targeted, this indicated that the system may have indirectly lowered BSD. Additionally, CGs' perceived stress and emotional-behavioral responses predicted BSD, on average (across all occasions) and from occasion to occasion, with higher levels associated with worse BSD. These limited results provide some support for further research to investigate the nature of these relationships. PMID:20873693

  3. Kin relationship of caregivers and people with dementia: stress and response to intervention.

    PubMed

    Kim, Kyungmin; Zarit, Steven H; Femia, Elia E; Savla, Jyoti

    2012-01-01

    This study examined the effects of kin relationship on response to use of adult day services (ADS) on feelings of overload, depressive symptoms, and positive affect for family caregivers of people with dementia. The sample consisted of 341 participants drawn from two studies of ADS. The studies used a quasi-experimental design, comparing family caregivers enrolling their care receiver with dementia in an ADS program to a control group not using ADS. Using multilevel model analysis, we examined the main and interaction effects of kin relationship (wife vs. daughters/daughters-in-law), intervention (ADS vs. non-ADS users), and time (baseline, 3 months, and 12 months) on overload, depressive symptoms, and positive affect. Kin relationship affected the response to intervention but in a somewhat different way for each outcome measure. For depressive symptoms, both wives and daughters using ADS had lower scores over time compared to controls. Both wives and daughters using ADS had lower feelings of overload over time, but daughters had a greater decline and wives' scores on this measure dropped only to the level found among controls. For positive affect, wives using ADS showed a considerable decline over time. These findings suggest that kin relationship is an important moderator of caregivers' response to intervention and warrant more attention both in the design and evaluation of interventions with family caregivers. Copyright © 2011 John Wiley & Sons, Ltd.

  4. Depressed Affect and Dimensions of Religiosity in Family Caregivers of Individuals with Dementia.

    PubMed

    Winter, Laraine; Moriarty, Helene J; Atte, Faith; Gitlin, Laura N

    2015-08-01

    Religiosity and mood have long been recognized as associated, but some patterns of associations suggest complex relationships. Using a multidimensional measure of religiosity, we explored the possibility that dimensions of religiosity may have (1) different strengths of association and (2) directions of association with depressed mood. We measured five dimensions of religiosity in 1227 family caregivers of persons with dementia, testing associations of each dimension to caregivers' depressive symptoms. In zero-order associations, higher scores on each religiosity dimension were associated with lower depression. Yet in hierarchical multiple regressions models, adjusting for other religiosity dimensions, different dimensions showed either no independent association, an independent association, or an inverse association with depressed mood. Frequency of prayer reversed directions of association-showing higher depression in caregivers who prayed more. Findings underscore the complex and sometimes bidirectional association between depressed mood and religiosity and argue for recognition of distinct dimensions of religiosity.

  5. 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. © The Author(s) 2015.

  6. Influence of personality on depression, burden, and health-related quality of life in family caregivers of persons with dementia.

    PubMed

    Kim, Sun Kyung; Park, Myonghwa; Lee, Yunhwan; Choi, Seong Hye; Moon, So Young; Seo, Sang Won; Park, Kyung Won; Ku, Bon D; Han, Hyun Jeong; Park, Kee Hyung; Han, Seol-Heui; Kim, Eun-Joo; Lee, Jae-Hong; Park, Sun A; Shim, Yong S; Kim, Jong Hun; Hong, Chang Hyung; Na, Duk L; Ye, Byoung Seok; Kim, Hee Jin; Moon, Yeonsil

    2017-02-01

    Personality may predispose family caregivers to experience caregiving differently in similar situations and influence the outcomes of caregiving. A limited body of research has examined the role of some personality traits for health-related quality of life (HRQoL) among family caregivers of persons with dementia (PWD) in relation to burden and depression. Data from a large clinic-based national study in South Korea, the Caregivers of Alzheimer's Disease Research (CARE), were analyzed (N = 476). Path analysis was performed to explore the association between family caregivers' personality traits and HRQoL. With depression and burden as mediating factors, direct and indirect associations between five personality traits and HRQoL of family caregivers were examined. Results demonstrated the mediating role of caregiver burden and depression in linking two personality traits (neuroticism and extraversion) and HRQoL. Neuroticism and extraversion directly and indirectly influenced the mental HRQoL of caregivers. Neuroticism and extraversion only indirectly influenced their physical HRQoL. Neuroticism increased the caregiver's depression, whereas extraversion decreased it. Neuroticism only was mediated by burden to influence depression and mental and physical HRQoL. Personality traits can influence caregiving outcomes and be viewed as an individual resource of the caregiver. A family caregiver's personality characteristics need to be assessed for tailoring support programs to get the optimal benefits from caregiver interventions.

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

    PubMed

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

    2015-10-01

    Delirium superimposed on dementia is common and potentially distressing for patients, caregivers, and health care staff. We quantitatively and qualitatively assessed the experience of informal caregiver and staff (staff nurses, nurse aides, physical therapists) caring for patients with delirium superimposed on dementia. Caregivers' and staff experience was evaluated three days after delirium superimposed on dementia resolution (T0) with a standardized questionnaire (quantitative interview) and open-ended questions (qualitative interview); caregivers were also evaluated at 1-month follow-up (T1). A total of 74 subjects were included; 33 caregivers and 41 health care staff (8 staff nurses, 20 physical therapists, 13 staff nurse aides/health care assistants). Overall, at both T0 and T1, the distress level was moderate among caregivers and mild among health care staff. Caregivers reported, at both T0 and T1, higher distress related to deficits of sustained attention and orientation, hypokinesia/psychomotor retardation, incoherence and delusions. The distress of health care staff related to each specific item of the Delirium-O-Meter was relatively low except for the physical therapists who reported higher level of distress on deficits of sustained/shifting attention and orientation, apathy, hypokinesia/psychomotor retardation, incoherence, delusion, hallucinations, and anxiety/fear. The qualitative evaluation identified important categories of caregivers' and staff feelings related to the delirium experience. This study provides information on the implication of the experience of delirium on caregivers and staff. The distress related to delirium superimposed on dementia underlines the importance of providing continuous training, support and experience for both the caregivers and health care staff to improve the care of patients with delirium superimposed on dementia. Copyright © 2015 Elsevier Inc. All rights reserved.

  8. Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the MIND at Home Study

    PubMed Central

    Black, Betty S.; Johnston, Deirdre; Rabins, Peter V.; Morrison, Ann; Lyketsos, Constantine; Samus, Quincy M.

    2014-01-01

    OBJECTIVES To determine the prevalence and correlates of unmet needs in a sample of community-residing persons with dementia (PWD) and their informal caregivers. DESIGN Analysis of cross-sectional, baseline participant characteristics prior to randomization in a care coordination intervention trial. SETTING Baltimore, MD. PARTICIPANTS Community-residing PWD (n=254) and their informal caregivers (n=246). MEASUREMENTS In-home assessments of dementia-related needs based on the Johns Hopkins Dementia Care Needs Assessment. Bivariate and multivariate regression analyses were conducted to identify demographic, socioeconomic, clinical, functional and quality of life correlates of unmet needs. RESULTS The mean number of unmet needs in PWD was 7.7 (SD=4.8) and 4.6 (SD=2.3) in caregivers, with almost all PWD (99%) and caregivers (97%) having one or more unmet needs. Unmet needs in PWD were significantly greater among those with higher cognitive function. Ninety percent of PWD had unmet safety needs, over half had unmet needs for meaningful activities, and almost one-third had not received a prior evaluation or diagnosis. Higher unmet needs in PWD were associated significantly with non-white race, lower incomes, less impairment in activities of daily living and more symptoms of depression. For caregivers, more than 85% had unmet needs for resource referrals and caregiver education. Higher unmet caregiver needs were associated significantly with non-white race, less education, and more symptoms of depression. CONCLUSION Many community-residing PWD and their caregivers have unmet dementia-related needs for care, services and support. Providers should be aware that unmet needs may be higher among minority and low-income community residents, caregivers with lower education, and individuals with early-stage dementia. Identifying and treating symptoms of depression in PWD and caregivers may enable them to address their other unmet needs. PMID:24479141

  9. [Family caregiver burden caused by behavioral and psychological symptoms of dementia: measurement with a new original scale].

    PubMed

    Sugiura, Keiko; Ito, Mikiko; Mikami, Hiroshi

    2007-11-01

    The purpose of this study was to measure the caregiver burden caused by behavioral and psychological symptoms of dementia (CBBD) using an originally developed scale and to estimate the CBBD scores in a large sample of family caregivers of elderly people. The subjects were 1,818 users of the public Long-term Care Insurance, randomly stratified and sampled in Higashi-osaka city, Osaka prefecture. Data were collected through mailed, anonymous self-report questionnaires. The survey was conducted in October 2003. We created a 10-item CBBD scale based on previous studies on caregivers of dementia. The CBBD scale was applied to all caregivers regardless of dementia symptoms, and we also collected the following information: demographic data of the care-recipients and caregivers, the level of cognitive disorders of the care-recipient and the overall subjective caregiver burden. All items of the CBBD scale were selected at higher percentages by caregivers of care-recipients with cognitive disorders than caregivers of care-recipients without cognitive disorders. In particular, the relative risk and odds ratio of caregivers of care-recipients with cognitive disorder was higher in items such as 'the caregiver feels fear and anxiety about the care-recipient's unpredictable behavior', 'the care-recipient doesn't understand what the caregiver says', 'the caregiver feels irritated with incomprehensible care-recipient's behavior' which pose psychological stress or pressure on caregivers. On the other hand, the relative risk and odds ratio of the overall subjective caregiver burden was lower than that of any item of the CBBD scale. Furthermore, all CBBD items were related to symptoms of dementia (aroused/paranoid behavior, memory disorder, cognitive dysfunction, pica behavior). The CBBD scale had sensitivity for the care-recipient's cognitive disorder. In addition, it can detect more precisely the caregiver burden such as psychological stress or pressure due to the care

  10. Developmental Sequelae of Caregiver's Stressful Police Contact among Minority Children Starting School

    ERIC Educational Resources Information Center

    Thomas-Tate, Shurita; Daugherty, Timothy K.

    2017-01-01

    Employing an existing database of African American and biracial children entering metropolitan Detroit schools, we examined children of caregivers with and without reported stressful police contact. As anticipated, young children of caregivers with recent stressful police contact appear to suffer cognitive performance decrements on a nonverbal…

  11. Caregiver Reports of Sleep Problems in Non-Hispanic White, Hispanic, and African American Patients with Alzheimer Dementia

    PubMed Central

    Ownby, Raymond L.; Saeed, Muhammad; Wohlgemuth, William; Capasso, Robson; Acevedo, Amarilis; Peruyera, Gloria; Sevush, Steven

    2010-01-01

    Study Objectives: Sleep problems are common in persons with dementing illnesses and among the most stressful patient behaviors for caregivers. Although studies have shown differences in sleep across ethnic groups, little information is available on ethnic differences among persons with dementia. The purpose of this study was to investigate possible ethnic differences in sleep problems among patients with Alzheimer dementia. Method: Caregiver reports of 5 sleep- or circadian rhythm-related behavioral problems (behavior disturbance worse in the evening, difficulties falling asleep, frequent awakenings, early awakenings, and excessive daytime sleep) were evaluated in 395 patients who had received a diagnosis of Alzheimer disease after diagnostic evaluation. The average cognitive score of the groups suggested that they could be characterized as having moderately severe impairment. The frequency of sleep problems was then evaluated across subgroups defined by self-reported ethnicity (African American, Hispanic, and non-Hispanic white). As patient and caregiver characteristics may affect caregivers' reports of patients' behaviors, mixed effects regression models were used to adjust for patient and caregiver variables that might affect caregiver reports. Results: Analyses revealed ethnic differences in sleep or circadian rhythm disturbances. African American and Hispanic patients were reported to have more severe sleep disturbances than non-Hispanic whites. After correction for patient and caregiver variables that might have affected caregiver reports, differences between African Americans and others remained. Conclusions: Sleep problems in patients with dementing illnesses are reported by caregivers with differing frequencies across groups of African Americans, Hispanics, and non-Hispanic whites. Clinicians should be aware of these differences in assessing sleep disturbance in patients with dementia as well as the potential effects of patient and caregiver variables on

  12. Attentional avoidant biases as mediators in the association between experiential avoidance and blood pressure in dementia family caregivers.

    PubMed

    Márquez-González, María; Cabrera, Isabel; Losada, Andrés; Knight, Bob G

    2017-03-02

    Experiential avoidance in caregiving (EAC) has been found to be related with dementia family caregivers´ distress and blood pressure (BP). The association between EAC and avoidant attentional biases to emotional stimuli in dementia caregivers, and the potential mediating role of these attentional biases in the association between EAC and increased BP are explored. Seventy nine dementia family caregivers performed a dot-probe task with emotional pictures (distressing and positive) varying in content (general vs. caregiving-related (CR)) and time of exposure (100 vs. 500 ms). They also completed measures of EAC, anxiety, depression, alexithymia and rumination, and their BP was measured. EAC was associated with avoidant attentional biases to CR emotional pictures and negative pictures in general at 100 ms. Experiential Avoidance in Caregiving Questionnaire (EACQ) 'avoidant behaviors' and EACQ 'intolerance of negativity' factors were associated with diastolic and systolic BP, respectively, with attentional avoidance of CR emotional pictures (distressing and positive, respectively) mediating this association. Attentional avoidance of CR emotional stimuli may be the link between EAC and increased BP, as it prevents emotional processing and facilitates the maintenance of physiological activation. EAC may pose a risk for cardiovascular disease in dementia caregivers.

  13. Effects of combined intervention programmes for people with dementia living at home and their caregivers: a systematic review.

    PubMed

    Smits, Carolien H M; de Lange, Jacomine; Dröes, Rose-Marie; Meiland, Franka; Vernooij-Dassen, Myrra; Pot, Anne Margriet

    2007-12-01

    This study reviews the evidence for effects of combined intervention programmes for both the informal caregiver and the person with dementia. Systematic review. Electronic databases and key articles were searched for effect studies of combined programmes, published between January 1992 and February 2005. The resulting 52 reports were scored according to set inclusion criteria. Twenty five reports relating to 22 programmes met the inclusion criteria. Various aspects of caregivers' mental health and burden were studied. Best results were obtained regarding general mental health. Other aspects often showed modest and varying results. Caregivers' competence was less often addressed. The effects on the cognitive and physical functioning, behavioural problems and survival of the persons with dementia were modest and inconsistent, whereas their mental health is positively affected and admittance to long stay care is often delayed. Combined programmes may improve some, not all, aspects of functioning for caregiver and person with dementia. Care professionals must define their programme goals and target groups before advising their clients on a combined programme. Research may focus on the effects of programmes that were introduced fairly recently and on subgroups of caregivers (female caregivers, depressed caregivers and people with dementia, and minorities).

  14. Care participation and burden among informal caregivers of older adults with care needs and associations with dementia.

    PubMed

    Vaingankar, Janhavi Ajit; Chong, Siow Ann; Abdin, Edimansyah; Picco, Louisa; Jeyagurunathan, Anitha; Zhang, YunJue; Sambasivam, Rajeswari; Chua, Boon Yiang; Ng, Li Ling; Prince, Martin; Subramaniam, Mythily

    2016-02-01

    Few studies have estimated care burden in large, representative, multi-ethnic Asian population-based informal caregivers of older adults with care needs. This study describes informal caregivers' care participation for a population-based sample of older adults with care needs in Singapore, investigates differences by dementia status, and examines correlates of caregivers' burden. Data collected from 693 pairs of older adults, aged 60 to 100 years, having any care needs, and their informal caregivers, who were aged 21 to 88 years, closely involved in their care and "knew the older resident best," and were interviewed during a cross-sectional national survey, were used. Clinical characteristics of older adults, including behavioral and psychological symptoms of dementia (BPSD) and dementia diagnosis, care needs, and socio-demographic characteristics of participants were obtained. Care burden was assessed with the Zarit Burden Interview. Informal caregivers' participation was highest in activities related to communication (35.1%), feeding (32%), and bathing (21.1%). Among the older adults with any care need, 356 (51.4%) had dementia. Care burden was significantly associated with married caregivers (odds ratio (OR) 2.4 vs. never married), when their relative belonged to a younger cohort (OR 2.5 vs. >84 years), needed care much of the time (OR 2.5 vs. no care needed), exhibited BPSD (OR 3.5 vs. no BPSD), and had dementia (OR 2.52 vs. no dementia). Factors related to older adults--more care needs, presence of BPSD, and dementia--were significant contributors to informal caregivers' burden, and these should be considered while planning interventions to alleviate care burden.

  15. 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

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

    PubMed

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

    2015-01-01

    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. 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. 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. The preferences of end-of-life issues differed greatly between dementia patients and their caregivers. Depression in caregivers is associated with such discrepancy.

  17. A comparison of caregiver burden in older persons and persons with Parkinson's disease or dementia in sub-Saharan Africa.

    PubMed

    Dotchin, C L; Paddick, S-M; Longdon, A R; Kisoli, A; Gray, W K; Dewhurst, F; Chaote, P; Dewhurst, M; Walker, R W

    2014-04-01

    Caregiver burden includes the many physical, mental and socio-economic problems arising from caring for individuals with chronic and disabling diseases. Being a carer in sub-Saharan Africa (SSA), where little is known about chronic neurological conditions, may be extremely demanding. Conversely, multigenerational living may allow sharing of care among many caregivers. We wished to determine the relative burden of caring for two chronic neurodegenerative conditions (Parkinson's disease (PD) and dementia) in rural Tanzania. All surviving patients from a PD prevalence study, newly identified people with PD from a neurological disorders study and all people with dementia from a dementia prevalence study in Hai, rural Tanzania, were invited to participate. The Zarit Burden Interview (ZBI) was used to determine level of caregiver strain (higher score reflects more strain). Of 25 PD patients ZBI was recorded in 20 (14 male). Five had no identifiable carer as they were largely independent. Three had PD dementia (PDD). Of 75 people with dementia (excluding 3 PDD), 43 (32 female) completed the ZBI. For the other 32, the caregivers felt the care they provided was a normal intergenerational expectation. Median ages were 78.5 and 85 years for PD and dementia, respectively. Median ZBI was 30.5 for PD and 14 for dementia (U = 166.0, z = -3.913, p < 0.001). Disease duration and disease type (PD or dementia) were univariate predictor of ZBI score, although only disease type was predictive by multivariable linear regression. Caring for an individual with PD may be more burdensome than caring for an individual with dementia in SSA. People with more advanced PD had higher caregiver burden.

  18. 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

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

    PubMed

    Andrén, Signe; Elmståhl, Sölve

    2005-06-01

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

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

    PubMed

    Hooper, Emma K; Collins, Tracy

    2016-10-06

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

  1. 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

  2. Anger and health in dementia caregivers: exploring the mediation effect of optimism.

    PubMed

    López, J; Romero-Moreno, R; Márquez-González, M; Losada, A

    2015-04-01

    Although previous studies indicate a negative association between caregivers' anger and health, the potential mechanisms linking this relationship are not yet fully understood. The aim of this study was to explore the potential mediating role of optimism in the relationship between anger and caregivers' physical health. Dementia caregivers (n = 108) were interviewed and filled out instruments assessing their anger (reaction), optimism and health (vitality). A mediational model was tested to determine whether optimism partially mediated the relationship between anger and vitality. Angry reaction was negatively associated with optimism and vitality; optimism was positively associated with vitality. Finally, the relationship between angry reaction and vitality decreased when optimism was entered simultaneously. A non-parametric bootstrap approach confirmed that optimism significantly mediated some of the relationship between angry reaction and vitality. These findings suggest that low optimism may help explain the association between caregivers' anger and reduced sense of vitality. The results provide a specific target for intervention with caregivers. Copyright © 2013 John Wiley & Sons, Ltd.

  3. Using the Affiliate Stigma Scale with caregivers of people with dementia: psychometric evaluation.

    PubMed

    Chang, Chih-Cheng; Su, Jian-An; Lin, Chung-Ying

    2016-10-26

    In this study, we examined the psychometric properties of the Affiliate Stigma Scale to measure affiliate stigma for caregivers of family members with dementia, a topic scantily covered in the literature. Two hundred seventy-one caregivers were recruited. Each completed the Affiliate Stigma Scale, Caregiver Burden Inventory, Taiwanese Depression Questionnaire, Beck Anxiety Inventory, and 28-item World Health Organization Quality of Life questionnaire. The data were evaluated for internal consistency and concurrent validity, and they were analyzed using Rasch statistics and confirmatory factor analysis (CFA). CFA and Rasch analysis suggested that the Affiliate Stigma Scale contains three underlying unidimensional concepts (cognition, affect, and behavior). The three concepts had satisfactory internal consistency (α = 0.822-0.855) and concurrent validity (r = 0.290-0.628 with caregiver burden, 0.391-0.612 with depression, 0.367-0.467 with anxiety, and -0.590 to -0.365 with quality of life). The Affiliate Stigma Scale is a promising instrument with sound psychometric properties for measuring affiliate stigma. Healthcare providers might want to use it to understand the caregivers' perspectives and to design appropriate interventions to decrease their affiliate stigma.

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

    PubMed Central

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

    2013-01-01

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

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

    PubMed

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

    2011-01-01

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

  6. 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

  7. 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

  8. 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

    Auer, Stefanie R; Span, Edith; Reisberg, Barry

    2015-07-01

    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. © The Author(s) 2013.

  9. Perceived quality in a dementia unit: patients' caregivers as information providers.

    PubMed

    López-Picazo, J J; de Dios Cánovas-García, J; Antúnez, C; Marín, J; Antequera, M M; Vivancos, L; Martínez, B; Legaz, A; Navarro, D; Leal, M

    2016-10-22

    Dementia units (DU) provide comprehensive and specialised care to patients with dementia. However, assessment in these units normally focuses on patient management. The aim of this study was to determine satisfaction of the caregivers of patients managed in a DU and how they rated DU care. We created a self-administered questionnaire which was completed by 236 caregivers visiting the DU in 2015. The questionnaire included 6 dimensions (accessibility, organisation, professionalism, relationship with staff, information, and facilities); data were analysed using problem rates. A total of 53.4% caregivers completed the questionnaire; most were women, patients' spouses, or first-degree relatives. The overall problem rates was 15.0% (95% CI, 13.9-16.1), with sizeable differences between dimensions: from 0.1% (95% CI, 0.0-0.4) for 'relationship with staff' and 'professionalism' to 49.3% (95% CI, 45.4-53.2) for 'information'. Waiting times over 30minutes were perceived as excessive. Information problems were not directly related to patient management. Satisfaction was scored 8.29/10 (median 8; SD 1.45); 77.3% (95% CI, 69.8-74.8) of respondents were highly satisfied. Ninety-nine percent of the caregivers stated that they would recommend the DU. This questionnaire provides interesting data on care quality as perceived by patients' caregivers. Our results have allowed us to identify problems and implement corrective actions. Our questionnaire has proved to be a useful tool for evaluating and improving care quality in DUs. Copyright © 2016 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

  10. Family caregivers' assessments of caring for a relative with dementia: a comparison of urban and rural areas.

    PubMed

    Ehrlich, Kethy; Boström, Anne-Marie; Mazaheri, Monir; Heikkilä, Kristiina; Emami, Azita

    2015-03-01

    This study aimed to describe and compare urban and rural family caregivers' reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors. Most studies on family caregivers' experiences caring for older people with dementia have been conducted in urban areas, and little is known about the experiences of family caregivers living in rural areas. A cross-sectional study design was used. A total of 102 caregivers (response rate 85%) from urban (n=57) and rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and demographic information. Data were analysed using descriptive and inferential statistics and linear regression models. Overall, family caregivers reported high satisfaction even if they also reported high impact on finances and daily living. Rural caregivers experienced a higher negative impact on finances but reported more support from family members than urban caregivers. Age, gender and relationship were significantly associated with four of the five CRA subscales. Educational level and geographical setting were not associated with any of the CRA subscales. The results of the study raise questions about the financial situation of older female caregivers and on the expectations of built-in family structures in urban and rural areas. Further studies focusing on the meaning and constitution of a family would help us to understand how these factors influence family caregiving both in rural and urban areas. To provide person-centred care and to avoid stereotyped caregiving, a better picture of traditions in family caregiving can improve a more differentiated and appropriate professional caregiving pliable with the cultural context in which it is carried out. © 2014 John Wiley & Sons Ltd.

  11. Measuring change in perceived well-being of family caregivers: validation of the Spanish version of the Perceived Change Index (PCI-S) in Chilean dementia caregivers.

    PubMed

    Aravena, José M; Albala, Cecilia; Gitlin, Laura N

    2017-05-16

    Few instruments evaluate family caregiver perceptions of challenges caring for persons with dementia and improvement or worsening in these areas. To address this measurement gap, we examine psychometric properties of a Spanish version of the 13-item Perceived Change Index (PCI-S), originally validated with English-speaking caregivers. Cross-sectional study with 94 caregivers of persons with mild to moderate dementia in Chile. Interviews included caregiver demographics, burden, health perception, distress with behaviours, dementia severity, behavioural symptoms and functionality. Caregiver mean age was 55.9 (SD ± 14.14) years and mean years caregiving was 3 (SD ± 2.60). The scale had strong internal consistency (Cronbach α = 0.94), and inter-observer consistency (CCI = 0.99; 95% CI = 0.95-0.99). Two factors were identified: Management skills (α = 0.89), and somatic well-being and affects (α = 0.92), explaining 63% of scale variance. Significant associations supporting convergent validity were observed for PCI-S and subscales with caregiver burden (p < 0.01), health perceptions (p < 0.01), depressive symptoms (p < 0.01) and distress with behaviours (p < 0.01); and in persons with dementia, functionality (p < 0.05), dementia severity (p < 0.05) and behavioural symptoms (p < 0.01) in expected directions. In logistic regression models, perceived worsening (PCI-S and subscale scores) was associated with more behavioural symptoms (OR = 1.07; 95% CI = 1.03-1.15) and caregiver burden (OR = 1.48; 95% CI = 1.18-1.86); whereas perceived improvement was associated with higher physical functioning (OR = 0.95; 95% CI = 0.91-0.99) in persons with dementia. PCI-S scores were not associated with socio-demographic characteristics reflecting divergent validity. Spanish version of the 13-item Perceived Change Index and its two-factor solution is a valid and reliable measure with clinical utility to detect improvement or worsening in

  12. The involvement of multiple caregivers in cognitive-behavior therapy for anxiety in persons with dementia

    PubMed Central

    Robinson, Christina M.; Paukert, Amber; Kraus-Schuman, Cynthia A.; Snow, A. Lynn; Kunik, Mark E.; Wilson, Nancy L.; Teri, Linda; Stanley, Melinda A.

    2011-01-01

    Objectives Peaceful Mind, a cognitive-behavioral therapy for treating anxiety in persons with dementia, is a promising new treatment currently under investigation. This article reports results of our examination of a modification of the treatment protocol in two cases that included multiple caregivers in treating two persons with dementia. Method Two case presentations of the benefits and challenges of including multiple caregivers in treatment are discussed. Treatment outcome data for these cases were collected as part of a larger investigation of Peaceful Mind. Results The involvement of multiple collaterals resulted in several benefits, including increased family communication, as well as increased opportunities for the practice of new skills. These cases have also presented unique challenges requiring alterations in therapy structure and attention to issues of family conflict. Conclusions Including multiple collaterals in cognitive-behavioral therapy for treating anxiety in persons with dementia is feasible and may be beneficial in maximizing treatment gains and increasing the family’s investment in therapy. PMID:21491216

  13. Randomized Controlled Trial of Inner Resources Meditation for Family Dementia Caregivers.

    PubMed

    Waelde, Lynn C; Meyer, Hilary; Thompson, Jason M; Thompson, Larry; Gallagher-Thompson, Dolores

    2017-03-06

    This randomized controlled trial examined the comparative effectiveness of 2 interventions for improving diurnal cortisol slope and life satisfaction and reducing stress symptoms among older female dementia family caregivers. Thirty-one family dementia caregivers were randomized to 8 weeks of Inner Resources for Stress mindfulness meditation and mantra training (IR) or psychoeducation and telephone support (PTS). Intention-to-treat analyses revealed statistically significant pre-post improvements in diurnal cortisol slope and overall life satisfaction, but not depression or self-efficacy, in the IR relative to the PTS group. Adherence to between-session meditation practice was significantly associated with decreases in depression and self-reported improvements in ability to cope with stress. In addition, IR participants rated the overall benefits of the program more highly than the PTS group. These results indicate that mindfulness meditation and mantra has promise as a feasible and effective caregiver intervention for quality of life and physiological responding to stress. © 2017 Wiley Periodicals, Inc.

  14. 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

  15. 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.

  16. Trajectories of health-related quality of life among family caregivers of individuals with dementia: A home-based caregiver-training program matters.

    PubMed

    Kuo, Li-Min; Huang, Huei-Ling; Liang, Jersey; Kwok, Yam-Ting; Hsu, Wen-Chuin; Liu, Chin-Yi; Shyu, Yea-Ing L

    To determine distinct courses of change in health-related quality of life (HRQoL) among family caregivers of individuals with dementia and how participating in a home-based caregiver-training program affects the probability of belonging to each course. Sixty three caregivers were in the intervention group, and 66 caregivers were in the control group of a single-blinded randomized clinical trial. Two distinct trajectories of HRQoL were identified: a well-functioning trajectory and a poor-functioning trajectory. Caregivers who received the training program were more likely than those who did not have a well-functioning trajectory of HRQoL over 18 months. This trajectory included bodily pain (b = 1.02, odds ratio [OR] = 2.76), general health perception (b = 1.28, OR = 3.60), social functioning (b = 1.12, OR = 3.05), vitality (b = 1.51, OR = 4.49), general mental health (b = 1.08, OR = 2.94), and mental component summary (b = 1.27, OR = 3.55). Home-based caregiver training can be considered as part of the protocol for managing patients with dementia and their caregivers. NCT02667951. Copyright © 2016 Elsevier Inc. All rights reserved.

  17. 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

  18. Agitation in dementia and the role of spatial and sensory interventions: experiences of professional and family caregivers.

    PubMed

    Van Vracem, Marieke; Spruytte, Nele; Declercq, Anja; Van Audenhove, Chantal

    2016-06-01

    There is a growing interest in environmental interventions to complement the psychosocial approaches to cope with agitation in dementia. The aim of this study was to present this evidence from literature and research to care practitioners and family carers in order to gather their reflections. In this way, we can identify experienced gaps in care practice and define needs for further research. A framework with seven types of environmental interventions for agitation in dementia was developed through literature review, referring to the impact of light, smell, noise, temperature, nature, colour and spatial configuration. This framework guided three expert panels, respectively, with family caregivers of persons with dementia (N = 5), professional home care workers (N = 12) and professional caregivers working in nursing homes (N = 10). All caregivers stressed the impact of agitation on their quality of life and on the quality of life of the person with dementia. Most caregivers were familiar with the impact of daylight, natural elements and domestic smells. Caregivers were unfamiliar with the specific effects of bright light therapy and were interested in more research on the effectiveness of light, temperature and spatial configuration. They stressed the individuality of agitation in dementia. Caregivers already use sensory and spatial interventions to manage agitation, and they are interested in knowing more about feasible effective interventions. Caregivers need to be informed on the possible benefits of sensory environmental factors on coping with agitation. To this end, it is very useful to take the experiences of caregivers into account. © 2015 Nordic College of Caring Science.

  19. Effect of Moderate to Vigorous Physical Activity Intervention on Improving Dementia Family Caregiver Physical Function: A Randomized Controlled Trial

    PubMed Central

    Farran, Carol J; Etkin, Caryn D; Eisenstein, Amy; Paun, Olimpia; Rajan, Kumar B; Sweet, Cynthia M Castro; McCann, Judith J; Barnes, Lisa L; Shah, Raj C; Evans, Denis A

    2017-01-01

    Objective Alzheimer’s disease and related dementias (ADRD) affect more than five million Americans and their family caregivers. Caregiving creates challenges, may contribute to decreased caregiver health and is associated with $9.7 billion of caregiver health care costs. The purpose of this 12 month randomized clinical trial (RCT) was to examine if the Enhancing Physical Activity Intervention (EPAI), a moderate to vigorous physical activity (MVPA) treatment group, versus the Caregiver Skill Building Intervention (CSBI) control, would have greater: (1) MVPA adherence; and (2) physical function. Methods Caregivers were randomly assigned to EPAI or CSBI (N=211). MVPA was assessed using a self-report measure; and physical function was objectively assessed using two measures. Intention-to-treat analyses used descriptive, categorical and generalized estimating equations (GEE), with an exchangeable working correlation matrix and a log link, to examine main effects and interactions in change of MVPA and physical function over time. Results At 12 months, EPAI significantly increased MVPA (p=<0.001) and number of steps (p=< .01); maintained stable caregiving hours and use of formal services; while CSBI increased hours of caregiving (p=<0.001) and used more formal services (p=<0.02). Qualitative physical function data indicated that approximately 50% of caregivers had difficulties completing physical function tests. Conclusion The EPAI had a stronger 12 month effect on caregiver MVPA and physical function, as well as maintaining stability of caregiving hours and formal service use; while CSBI increased caregiving hours and use of formal services. A study limitation included greater EPAI versus CSBI attrition. Future directions are proposed for dementia family caregiver physical activity research. PMID:28752016

  20. Caregiver self-efficacy for managing behavioural problems of older people with dementia in Taiwan correlates with care receivers' behavioural problems.

    PubMed

    Huang, Huei-Ling; Shyu, Yea-Ing Lotus; Chen, Sien-Tsong; Hsu, Wen-Chuin

    2009-09-01

    To investigate the relationship between family caregivers' self-efficacy for managing behavioural problems of older people with dementia and their behavioural problems in Taiwan. Older people with dementia commonly have at least one behavioural problem, which caregivers complain is difficult to handle. To provide interventions that can help caregivers more effectively manage the behavioural problems of care receivers with dementia, caregivers' self-efficacy on managing behavioural problems must be assessed. However, it is not clear yet how these behavioural problems of older people with dementia may influence caregivers' self-efficacy for managing behavioural problems. A prospective, correlational study. Eighty dyads of older people with dementia and their family caregivers were recruited from neurological clinics of a medical centre in Taiwan. Care receivers were assessed for behavioural problems using the Chinese version of Cohen-Mansfield Agitation Inventory, community form. Caregivers' self-efficacy for managing care receivers' agitation was measured by the research team-developed Agitation Management Self-Efficacy Scale. Caregiver self-efficacy for managing behavioural problems was significantly and positively associated with more caregiver education, greater duration of caregiving and with care receivers' less physically non-aggressive behaviours. When caregiver characteristics were controlled for in hierarchical regression analysis, physically non-aggressive behaviours explained 6% of the variance in caregiver self-efficacy. Results of this study contradict the general belief that physically aggressive behaviours of elders with dementia are more difficult for family caregivers to handle than other behavioural problems. Clinicians need to address physically non-aggressive problem behaviours. Nurses could assess older patients with dementia for physically non-aggressive behaviours and train less educated caregivers to improve their self-efficacy for managing

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

    PubMed

    Donath, Carolin; Bleich, Stefan; Grässel, Elmar

    2009-05-01

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

  2. Sleep Duration and the Cortisol Awakening Response in Dementia Caregivers Utilizing Adult Day Services

    PubMed Central

    Leggett, Amanda N.; Liu, Yin; Klein, Laura Cousino; Zarit, Steven H.

    2015-01-01

    Objective Sleep complaints are common among caregivers and are associated with detriments in mental and physical health. Cortisol, a biomarker of the stress process, may link sleep with subsequent health changes in caregivers. The current study examines whether sleep duration is directly associated with the cortisol awakening response (CAR), or if it is moderated by Adult Day Services (ADS) use, an intervention found previously to influence daily CAR by reducing stressor exposure. Methods Associations were examined in caregivers (N=158) of individuals with dementia (IWD) on days when IWDs attended ADS and days when IWDs did not attend ADS. Data were gathered over 8 consecutive days. Caregivers were primarily female (87.3%) with a mean age of 61.59. A multi-level growth curve model tested the association of an interaction of today's ADS use and last night's sleep duration with today's CAR as the outcome. Results The interaction between ADS use and within-person sleep duration was significant such that when an individual sleeps longer than their average but does not use ADS, they have a smaller or blunted CAR. On the other hand when an individual sleeps longer than their average and uses ADS, they have a higher but nonsignificant CAR. Sleeping shorter than usual was associated with a dynamic rise regardless of ADS use. Conclusions Findings indicate that ADS use moderates the association between sleep duration and CAR such that longer than average sleep is associated with blunted, dysregulated cortisol patterns only on non-ADS days. PMID:26348500

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

    PubMed Central

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

    2015-01-01

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

  4. Cognitive reserve and self-efficacy as moderators of the relationship between stress exposure and executive functioning among spousal dementia caregivers.

    PubMed

    Pertl, M M; Hannigan, C; Brennan, S; Robertson, I H; Lawlor, B A

    2017-04-01

    A substantial literature has reported that stress negatively impacts on cognitive processes. As dementia caregiving can be stressful, it has been hypothesized that the challenges of dementia care may increase caregivers' own vulnerability to cognitive decline. Prefrontal processes are thought to be most vulnerable to stress; however, few studies have examined whether greater caregiver stress predicts poorer executive dysfunction, and no previous research has considered potential moderators of this relationship. We examined (1) whether greater psychological stress mediated a relationship between caregiver stress exposure and executive functioning and (2) whether greater self-efficacy and cognitive reserve (CR) moderated this relationship. Spousal dementia caregivers (n = 253) completed the Neuropsychiatric Inventory Questionnaire (stress exposure), the Perceived Stress Scale, the National Adult Reading Test (CR), the Fortinsky dementia-specific caregiver self-efficacy scale, and the Color Trails Test (executive functioning). Moderated mediation was tested using the PROCESS macro. Age, gender, and dementia risk factors were included as covariates. Greater stress exposure indirectly predicted executive functioning through psychological stress. Stronger relationships between greater psychological stress and poorer executive functioning were observed among caregivers with lower CR; there was no evidence that self-efficacy moderated the relationship between stress exposure and psychological stress. Our findings are in line with the idea that greater psychological stress in response to challenges associated with dementia care predicts poorer caregiver executive functioning, particularly among caregivers with low CR. However, these findings are cross sectional; it is also possible that poorer executive functioning contributes to greater caregiver stress.

  5. The effects of a Cognitive Stimulation Therapy [CST] programme for people with dementia on family caregivers' health.

    PubMed

    Aguirre, Elisa; Hoare, Zoe; Spector, Aimee; Woods, Robert T; Orrell, Martin

    2014-03-14

    There is growing evidence that Cognitive Simulation Therapy (CST) benefits cognition and quality of life of people with dementia, but little is known about the indirect effects of this intervention on family caregivers. This study sought to investigate the effect of CST on family caregivers general health status of people with dementia living in the community attending the CST intervention. Eighty-five family caregivers of people with dementia took part in the study. All the people with dementia received the standard twice weekly seven weeks of the CST intervention plus either 24 weeks of a maintenance CST (MCST) intervention or 24 weeks of treatment as usual. Family caregivers were assessed before and after their relatives the CST programme, and after 3 and 6 months of the MCST programme. A pre and post CST groups comparison was undertaken to evaluate the open trial first phase and an ANCOVA model used to analyse the maintenance phase with its controlled comparison. We found no evidence for a benefit on the family caregiver outcome measures of the intervention before and after CST groups by using a t-test analysis or any significant differences between intervention and control groups for any of the variables considered at any time point (3 and 6 month follow up). CST seems to have a relatively specific benefit fpr people with dementia that may not carry over to family carers. Future studies need to further explore and compare the effects that CST might bring to family caregivers of people with dementia attending the intervention. Current Controlled Trials ISRCTN26286067.

  6. Caregiver reports of sleep problems in non-Hispanic white, Hispanic, and African American patients with Alzheimer dementia.

    PubMed

    Ownby, Raymond L; Saeed, Muhammad; Wohlgemuth, William; Capasso, Robson; Acevedo, Amarilis; Peruyera, Gloria; Sevush, Steven

    2010-06-15

    Sleep problems are common in persons with dementing illnesses and among the most stressful patient behaviors for caregivers. Although studies have shown differences in sleep across ethnic groups, little information is available on ethnic differences among persons with dementia. The purpose of this study was to investigate possible ethnic differences in sleep problems among patients with Alzheimer dementia. Caregiver reports of 5 sleep- or circadian rhythm-related behavioral problems (behavior disturbance worse in the evening, difficulties falling asleep, frequent awakenings, early awakenings, and excessive daytime sleep) were evaluated in 395 patients who had received a diagnosis of Alzheimer disease after diagnostic evaluation. The average cognitive score of the groups suggested that they could be characterized as having moderately severe impairment. The frequency of sleep problems was then evaluated across subgroups defined by self-reported ethnicity (African American, Hispanic, and non-Hispanic white). As patient and caregiver characteristics may affect caregivers' reports of patients' behaviors, mixed effects regression models were used to adjust for patient and caregiver variables that might affect caregiver reports. Analyses revealed ethnic differences in sleep or circadian rhythm disturbances. African American and Hispanic patients were reported to have more severe sleep disturbances than non-Hispanic whites. After correction for patient and caregiver variables that might have affected caregiver reports, differences between African Americans and others remained. Sleep problems in patients with dementing illnesses are reported by caregivers with differing frequencies across groups of African Americans, Hispanics, and non-Hispanic whites. Clinicians should be aware of these differences in assessing sleep disturbance in patients with dementia as well as the potential effects of patient and caregiver variables on reports of these problems.

  7. Testing the effectivity of the mixed virtual reality training Into D'mentia for informal caregivers of people with dementia: protocol for a longitudinal, quasi-experimental study.

    PubMed

    Jütten, Linda Helena; Mark, Ruth Elaine; Maria Janssen, Ben Wilhelmus Jacobus; Rietsema, Jan; Dröes, Rose-Marie; Sitskoorn, Margriet Maria

    2017-08-21

    Informal caregivers for people with dementia (hereafter: caregivers) often feel (over)burdened by the care for a loved one with dementia, and this can have various deleterious effects on both caregivers and patients. Support for caregivers is urgently needed, and for this reason, a dementia simulator (Into D'mentia) was developed in which caregivers experience what it is like to have dementia. The simulator attempts to heighten caregivers' empathy and understanding for the patient and, in turn, diminish their own caregiver burden. The current study evaluates whether the simulator is effective on a number of outcomes. A longitudinal, quasi-experimental study is ongoing in the Netherlands. We aim to recruit 142 caregivers in total divided over two groups: 71 caregivers in the intervention group and 71 caregivers in the control group. All participants will complete interviews and questionnaires at four time points: at baseline, 1 week, 2.5 months and 15 months after the training. The primary outcomes include empathy, caregiver burden, caregiver's sense of competence, social reliance, anxiety, depression and caregivers' subjective and objective health. This study is being carried out in agreement with the Declaration of Helsinki, and the protocol has been approved by the local ethics committees. This study is registered with The Netherlands National Trial Register (NNTR5856). © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  8. Effectiveness of family meetings for family caregivers on delaying time to nursing home placement of dementia patients: a randomized trial.

    PubMed

    Joling, Karlijn J; van Marwijk, Harm W J; van der Horst, Henriëtte E; Scheltens, Philip; van de Ven, Peter M; Appels, Bregje A; van Hout, Hein P J

    2012-01-01

    Interventions relieving the burden of caregiving may postpone or prevent patient institutionalization. The objective of this study was to determine whether a family meetings intervention was superior to usual care in postponing nursing home placement of patients with dementia. A randomized multicenter trial was conducted among 192 patients with a clinical diagnosis of dementia living at home at enrolment and their primary family caregiver. Dyads of caregivers and patients were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions with the primary caregiver and four family counseling sessions that included family members and friends. The primary outcome measure was the time until institutionalization of the patient. Intention-to-treat as well as per protocol analyses were performed. Survival analyses were carried out to evaluate the effectiveness of the intervention. During 18 months follow-up 23 of 96 relatives with dementia of caregivers in the intervention group and 18 of 96 relatives with dementia of caregivers in the usual care group were institutionalized. No significant difference between the intervention and the usual care group was found in time until institutionalization (adjusted hazard ratio (HR) 1.46, 95% confidence interval (CI) 0.78 to 2.74). The per-protocol analysis revealed no significant effect either (adjusted HR 0.57, 95% CI 0.21 to 1.57), although the number of placements among the adherers was relatively low (9.4%). A subgroup effect was found for patients' age, with a significantly higher risk of institutionalization for 'younger' patients in the intervention group compared with the usual care group (adjusted HR = 4.94, 95% CI 1.10 to 22.13). This family meetings intervention for primary caregivers of patients with dementia did not postpone patient institutionalization more than usual care. CONTROLLED-TRIALS.COM ISRCTN90163486.

  9. Effectiveness of Family Meetings for Family Caregivers on Delaying Time to Nursing Home Placement of Dementia Patients: A Randomized Trial

    PubMed Central

    Joling, Karlijn J.; van Marwijk, Harm W. J.; van der Horst, Henriëtte E.; Scheltens, Philip; van de Ven, Peter M.; Appels, Bregje A.; van Hout, Hein P. J.

    2012-01-01

    Background Interventions relieving the burden of caregiving may postpone or prevent patient institutionalization. The objective of this study was to determine whether a family meetings intervention was superior to usual care in postponing nursing home placement of patients with dementia. Methods A randomized multicenter trial was conducted among 192 patients with a clinical diagnosis of dementia living at home at enrolment and their primary family caregiver. Dyads of caregivers and patients were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions with the primary caregiver and four family counseling sessions that included family members and friends. The primary outcome measure was the time until institutionalization of the patient. Intention-to-treat as well as per protocol analyses were performed. Survival analyses were carried out to evaluate the effectiveness of the intervention. Results During 18 months follow-up 23 of 96 relatives with dementia of caregivers in the intervention group and 18 of 96 relatives with dementia of caregivers in the usual care group were institutionalized. No significant difference between the intervention and the usual care group was found in time until institutionalization (adjusted hazard ratio (HR) 1.46, 95% confidence interval (CI) 0.78 to 2.74). The per-protocol analysis revealed no significant effect either (adjusted HR 0.57, 95% CI 0.21 to 1.57), although the number of placements among the adherers was relatively low (9.4%). A subgroup effect was found for patients’ age, with a significantly higher risk of institutionalization for ‘younger’ patients in the intervention group compared with the usual care group (adjusted HR = 4.94, 95% CI 1.10 to 22.13). Conclusion This family meetings intervention for primary caregivers of patients with dementia did not postpone patient institutionalization more than usual care. Trial

  10. 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

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

    PubMed

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

    2014-08-01

    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. Copyright © 2014 Elsevier Inc. All rights reserved.

  12. Differences in stress-related ratings between research center and home environments in dementia caregivers using ecological momentary assessment.

    PubMed

    Fonareva, Irina; Amen, Alexandra M; Ellingson, Roger M; Oken, Barry S

    2012-01-01

    Clinicians and researchers working with dementia caregivers typically assess caregiver stress in a clinic or research center, but caregivers' stress is rooted at home where they provide care. This study aimed to compare ratings of stress-related measures obtained in research settings and in the home using ecological momentary assessment (EMA). EMA of 18 caregivers (mean age 66.4 years ±7.8; 89% females) and 23 non-caregivers (mean age 66.4 years ±7.9; 87% females) was implemented using a personal digital assistant. Subjects rated their perceived stress, fatigue, coping with current situation, mindfulness, and situational demand once in the research center and again at 3-4 semi-random points during a day at home. The data from several assessments conducted at home were averaged for statistical analyses and compared with the data collected in the research center. The testing environment had a differential effect on caregivers and non-caregivers for the ratings of perceived stress (p < 0.01) and situational demand (p = 0.01). When tested in the research center, ratings for all measures were similar between groups, but when tested at home, caregivers rated their perceived stress as higher than non-caregivers (p = 0.02). Overall, caregivers reported higher perceived stress at home than in the research center (p = 0.02), and non-caregivers reported greater situational demand in the research center than at home (p < 0.01). The assessment method and environment affect stress-related outcomes. Evaluating participants in their natural environment provides a more sensitive measure of stress-related outcomes. EMA provides a convenient way to gather data when evaluating dementia caregivers.

  13. Formal caregivers' experiences of aggressive behaviour in older people living with dementia in nursing homes: A systematic review.

    PubMed

    Holst, Adelheid; Skär, Lisa

    2017-06-30

    The purpose of this study was to investigate formal caregivers' experiences of aggressive behaviour in older people living with dementia in nursing homes. Aggressive behaviour symptoms among older people living with dementia are reported to be prevalent. As aggressive behaviour includes both verbal and physical behaviours, such as kicking, hitting and screaming, it causes an increased burden on formal caregivers. Professionals experiencing this aggression perceived it as challenging, causing physical and psychological damage, leading to anger, stress and depression. A systematic review was conducted. A search of published research studies between 2000 and 2015 was conducted using appropriate search terms. Eleven studies were identified and included in this review. The analysis resulted in four categories: formal caregivers' views on triggers of aggression, expressions of aggression, the effect of aggressive behaviours on formal caregivers and formal caregivers' strategies to address aggression. The results show that aggressive behaviour may lead to negative feelings in formal caregivers and nursing home residents. The results of this study suggest that having the ability to identify triggers possibly assists caregivers with addressing aggressive behaviour. Aggressive behaviour might also affect quality of care. Results from this systematic review indicate that caregivers prefer person-centred strategies to handle aggressive behaviour among older people, while the use of pharmaceuticals and coercion strategies is a last resort. © 2017 John Wiley & Sons Ltd.

  14. Predicting institutional long-term care admission in dementia: a mixed-methods study of informal caregivers' reports.

    PubMed

    Afram, Basema; Verbeek, Hilde; Bleijlevens, Michel H C; Challis, David; Leino-Kilpi, Helena; Karlsson, Staffan; Soto, Maria E; Renom-Guiteras, Anna; Saks, Kai; Zabalegui, Adelaida; Hamers, Jan P H

    2015-06-01

    To investigate agreement between: (1) expected reasons and actual reasons for admission of people with dementia according to informal caregivers; (2) scores on measurement instruments prior to admission and the actual reasons for admission according to informal caregivers. Timely admission of people with dementia is a crucial issue. Information is highly warranted on whether informal caregivers are capable of prior identification of causes of admission and, can thus be considered a reliable prospective source on causes of admission. A cohort study among informal caregivers of people with dementia who made a transition to institutional long-term care. Qualitative data on the expected and actual reasons for admission were collected via open-ended questions at baseline and follow-up. Furthermore, at baseline, data were collected using measurement instruments to measure pre-admission characteristics. Interviews took place between November 2010-April 2012. After categorizing the answers, the agreement between the expected and actual reasons was calculated. Furthermore, bivariate associations were calculated between the actual reasons for admission and scores on corresponding measurement instruments. For most informal caregivers, there was agreement between their statements on the expected reason and the actual reason for admission. A third of the caregivers showed no conformity. Bivariate associations showed that there is also agreement between the actual reasons for admission and scores on corresponding measurement instruments. Informal caregivers can be considered reliable sources of information regarding what causes the admission of a person with dementia. Professional care should anticipate informal caregivers' statements and collaborate with them to strive for timely and appropriate admission. © 2014 John Wiley & Sons Ltd.

  15. Vulnerability of caregivers of the elderly with dementia: a cross-sectional descriptive study.

    PubMed

    Leite, Bruna Silva; Camacho, Alessandra Conceição Leite Funchal; Joaquim, Fabiana Lopes; Gurgel, Jonas Lírio; Lima, Thiago Rodrigues; Queiroz, Raquel Santos de

    2017-01-01

    to evaluate the sociodemographic and clinical profile of the caregivers and its relation with the overburden from the care of the elderly with dementia. a cross-sectional descriptive study; the sample was non-probabilistic, developed with caregivers of elderly people with dementia. The field of investigation was the Health Care Center of the Elderly and their Caregivers (CASIC), in the city of Niterói, Rio de Janeiro, Brazil. Data collection took place from February to June 2016, with the following instruments: a sociodemographic questionnaire and Zarit scale. fifty percent of the caregivers presented moderate overburden; 38% presented little overburden; and 12% moderate/severe overburden. It was observed that the median of weekly care hours increases as the overburden increases. Caregivers with moderate to severe overburden, in the majority, do not share care. it is clear that the overburden of care places the caregiver in conditions of biological and psychological vulnerability. avaliar o perfil sociodemográfico e clínico dos cuidadores e sua relação com a sobrecarga proveniente do cuidado ao idoso com demência. estudo descritivo transversal, a amostra foi do tipo não probabilística, desenvolvida com os cuidadores de idosos com demência. O campo de investigação foi o Centro de Atenção à Saúde do Idoso e seus Cuidadores (CASIC), Niterói, Rio de Janeiro, Brasil. A coleta de dados ocorreu de fevereiro a junho de 2016, com os seguintes instrumentos: questionário sociodemográfico e escala de Zarit. 50% dos cuidadores apresentaram sobrecarga moderada, 38% apresentaram pouca sobrecarga e 12%, sobrecarga moderada/severa. Observou-se que a mediana das horas de cuidados semanais aumenta conforme a sobrecarga aumenta. Cuidadores com sobrecarga de moderada a severa, em caráter majoritário, não dividem o cuidado. Dessa forma, fica claro que a sobrecarga do cuidado coloca o cuidador em condições de vulnerabilidade biológica e psicológica.

  16. Prospective Evaluation of Physical Contact with Critically Ill Child on Caregiver Spiritual Wellbeing.

    PubMed

    Leland, Brian D; Nitu, Mara E; Hancock, Maureen; Moody, Karen; Gunderman, Richard; Moser, Elizabeth; Rowan, Courtney M

    2017-10-04

    To evaluate whether a pediatric intensive care unit initiative promoting physical contact between caregiver and patient improves caregiver spiritual wellbeing. The secondary objectives were to evaluate caregiver perceptions of care before and after the initiative and to follow unplanned extubation rate as a marker of safety of the initiative. We hypothesized that caregiver spiritual wellbeing and caregiver perceptions of care would improve with implementation of our physical contact initiative known as Project ROSE (Reach Out, Soothe, and Embrace). Project ROSE was a practice change initiative promoting physical contact between caregiver and hospitalized child in an academic quaternary care pediatric intensive care unit. Caregivers' spiritual wellbeing and perceptions of care were surveyed at days 1 and 4, then compared pre- and postimplementation of the unit-wide initiative. Wilcoxon rank sum tests compared groups (pre- and post-Project ROSE). A total of 331 caregivers returned surveys. We analyzed 331 surveys (pre, n = 174/post, n = 157). Caregiver spiritual wellbeing at enrollment (day 1) was no different between groups (P = .47). Caregiver spiritual wellbeing on day 4 was greater in the postintervention group (pre 40.0 [32.0, 44.0] vs post 42.0 [37.5, 45.0] P = .03). Caregiver perceptions of care improved postintervention. There was no change in the unplanned extubation rate between groups. Project ROSE improved caregiver spiritual wellbeing and perceptions of care, was implemented safely, addresses a need in family-centered care of critically ill pediatric patients, and merits consideration for integration into practice. Copyright © 2017 Elsevier Inc. All rights reserved.

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

    PubMed

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

    2016-11-25

    The prevalence of dementia is increasing without a known cure, resulting in an increasing number of informal caregivers. Caring for a person with dementia results in increased stress and depressive symptoms. There are several behavioural interventions designed to alleviate stress and depressive symptoms in caregivers of persons with dementia with evidence of efficacy. Two of the best-known interventions are the New York University Caregiver Intervention (NYUCI) and the Resources for Enhancing Alzheimer's Caregivers Health (REACH). The effectiveness of the NYUCI and REACH has never been compared. There is also a paucity of data on which interventions are more effective in Hispanics in New York City. Thus, we proposed the Northern Manhattan Hispanic Caregiver intervention Effectiveness Study (NHiCE), a pragmatic clinical trial designed to compare the effectiveness of adaptations of the NYUCI and the REACH in informal Hispanic caregivers of persons with dementia in New York City. NHiCE is a 6-month randomised controlled trial comparing the effectiveness of adaptations of the NYUCI and REACH among 200 Hispanic informal adult caregivers of persons with dementia. The planned number of sessions of the NYUCI and REACH are similar. The primary outcome measures are changes from baseline to 6 months in the Zarit Caregiver Burden Scale and Geriatric Depression Scale. Our primary approach to analyses will be intent-to-treat. The primary analyses will use mixed random effects models, and a full information maximum likelihood approach, with sensitivity analyses using generalised estimating equation. NHiCE is approved by the Institutional Review Board of Columbia University Medical Center (protocol AAAM5150). A Data Safety Monitoring Board monitors the progress of the study. Dissemination will include reports of the characteristics of the study participants, as well as a report of the results of the clinical trial. NCT02092987, Pre-results. Published by the BMJ Publishing Group

  18. Interventions to build resilience in family caregivers of people living with dementia: a comprehensive systematic review.

    PubMed

    Petriwskyj, Andrea; Parker, Deborah; O'Dwyer, Siobhan; Moyle, Wendy; Nucifora, Nikki

    2016-06-01

    Recent studies have indicated that family caregivers of people with dementia have higher rates of depression, anxiety and hopelessness, as well as higher levels of burden, stress and distress. Not all caregivers, however, succumb to the negative effects of caring. Caregivers who are able to recover from, resist or adapt to the physical and psychological demands of caring can be considered "resilient". The objective of this review was to examine the existing evidence regarding interventions for building resilience in family caregivers of people living with dementia. This review considered studies that included family caregivers of people with dementia. Studies investigating interventions to build resilience in family caregivers were considered by the review. For qualitative studies, the phenomena of interest were family caregivers' experiences of the interventions including factors affecting implementation and their subjective experience of outcomes. Studies conducted in any cultural or geographical context and any settings including participants' homes in the community, residential aged care or hospital, medical or allied health practice were considered for inclusion. Quantitative studies incorporating experimental and descriptive study designs and qualitative studies, including, but not limited to, phenomenology, grounded theory, ethnography, action research and feminist research were considered for inclusion. Quantitative studies were included that contained either objective or subjective outcome measures (or a combination of both). In cases in which proxy measures of resilience were used, only those papers that explicitly related the aims of the intervention and the measurement of outcomes to resilience itself were considered for inclusion. Proxies could include, but were not limited to, self-efficacy, locus of control, perceived burden, psychological wellbeing, strength, coping, positive adjustment and resourcefulness. Qualitative studies were similarly

  19. Herbal products and other supplements: use by elderly veterans with depression and dementia and their caregivers.

    PubMed

    Kales, Helen C; Blow, Frederic C; Welsh, Deborah E; Mellow, Alan M

    2004-03-01

    The use of herbal products and other "natural" supplements among the US population is on the rise. Limited data suggest that such use among the elderly may correlate with higher education levels as well as psychiatric symptoms. The authors examined herbal/supplement use among elderly veterans with depression and/or dementia (n = 82) and their primarily elderly caregivers (n = 56). Eighteen percent of subjects and 16% of caregivers used herbals/supplements. Seventy-five percent of subjects who used these products during the study period were also taking potentially interacting medications. Given the prior association of herbal/supplement use with higher education levels, a surprising number of elderly veterans with depression and/or dementia (the majority of whom had high school or less education) used these products. As evidenced by missing documentation in many physician notes, subjects may not have discussed their usage of herbals/supplements with their physicians. In light of the possibility of potentially harmful drug interactions, physicians who treat elderly patients should regularly inquire about the use of these products.

  20. Abuse of older persons with dementia by family caregivers: results of a 6-month prospective study in Hong Kong.

    PubMed

    Yan, Elsie

    2014-10-01

    To examine the association between care recipients' agitated behaviors, family caregivers' burnout, and abuse in community dwelling older Chinese with dementia in Hong Kong. This was a 6-month prospective study. One hundred forty-nine caregivers provided information on their demographic characteristics, care recipients' everyday functioning and agitated behaviors, and caregivers' burnout symptoms. Caregivers were re-interviewed 6 months later and provided information on changes in both care recipients' everyday functioning and agitated behaviors, and verbally and physically abusive behaviors directed at care recipients in the past month. The single most significant variable in predicting abuse at 6-month follow-up was abuse at baseline. In addition, verbal abuse was predicted by more co-residing days, a high level of agitated behavior, and a strong sense of caregiver depersonalization. Care recipients were more likely to be physically abused if they were male, had no chronic conditions other than dementia, and demonstrated a high level of agitated behaviors. Entering caregiver burnout into the model did not modify the association between care recipients' agitated behavior and abuse for either verbal or physical abuse. This study is the first to establish an association between care recipients' agitated behaviors, burnout, and abuse by family caregivers using prospective data. The present results confirmed that care recipients' agitated behaviors and caregivers' symptoms of burnout are associated with family caregivers' abusive behaviors. Caregiver burnout did not mediate the association between agitated behaviors and abuse. Proper management of care recipients' agitated behaviors and adequate support provided to family caregivers may help prevent the development of new cases of elder mistreatment. Copyright © 2014 John Wiley & Sons, Ltd.

  1. Effectiveness of an Internet Intervention for Family Caregivers of People with Dementia: Results of a Randomized Controlled Trial

    PubMed Central

    Blom, Marco M.; Zarit, Steven H.; Groot Zwaaftink, Rob B. M.; Cuijpers, Pim; Pot, Anne Margriet

    2015-01-01

    Background The World Health Organization stresses the importance of accessible and (cost)effective caregiver support, given the expected increase in the number of people with dementia and the detrimental impact on the mental health of family caregivers. Methods This study assessed the effectiveness of the Internet intervention ‘Mastery over Dementia’. In a RCT, 251 caregivers, of whom six were lost at baseline, were randomly assigned to two groups. Caregivers in the experimental group (N = 149) were compared to caregivers who received a minimal intervention consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety and Depression Scale: HADS-A). All data were collected via the Internet, and an intention-to-treat analysis was carried out. Results Almost all caregivers were spouses or children (in-law). They were predominantly female and lived with the care recipient in the same household. Age of the caregivers varied from 26 to 87 years. Level of education varied from primary school to university, with almost half of them holding a bachelor’s degree or higher. Regression analyses showed that caregivers in the experimental group showed significantly lower symptoms of depression (p = .034) and anxiety (p = .007) post intervention after adjustment for baseline differences in the primary outcome scores and the functional status of the patients with dementia. Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive symptoms (.26). Conclusions The Internet course ‘Mastery over Dementia’ offers an effective treatment for family caregivers of people with dementia reducing symptoms of depression and anxiety. The results of this study justify further development of Internet interventions for family caregivers of people with dementia and suggest that such interventions are promising for keeping support for family caregivers accessible and

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

    PubMed

    Taylor, B D; Tripodes, S

    2001-07-01

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

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

    PubMed

    Nishio, Midori; Ono, Mitsu

    2015-01-01

    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. 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. 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. 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.

  4. 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

  5. Family caregivers' sleep disturbance and its associations with multilevel stressors when caring for patients with dementia.

    PubMed

    Chiu, Yi-Chen; Lee, Yi-Nung; Wang, Peng-Chih; Chang, Ting-Huan; Li, Chia-Lin; Hsu, Wen-Chun; Lee, Shwu-Hua

    2014-01-01

    We tested a stress process model of multilevel stressors on sleep disturbance for family caregivers (FCG) of persons with dementia (PWD). For this cross-sectional study, trained research assistants collected data from a purposive sample of 180 PWD-FCG dyads at two teaching hospitals, two local hospitals, and two community long-term care service programs in northern Taiwan. PWDs' neuropsychiatric symptoms were assessed using the Chinese Neuropsychiatric Inventory (CNPI), FCGs' distress by CNPI Caregiver Distress Scale, physical fatigue by Visual Analogue for Fatigue Scale, mental fatigue by Attentional Function Index, depressive symptoms by the Center for Epidemiological Studies Depression Scale - Short Form, and sleep disturbance by the General Sleep Disturbance Scale. FCGs' most prevalent sleep disturbance problems were sleep quality problems (99.4%). Hierarchical regression models revealed that FCGs' sleep disturbance was predicted by their physical fatigue, their depressive symptoms, and the synergistic effect of physical fatigue and depressive symptoms in the final model, explaining 57.8% of the variance. This study supports the model that development of caregivers' sleep problems may depend on their depression, fatigue, and the synergistic effects of these two variables. These findings suggest that clinicians should educate FCGs about self-care and offer strategies for dealing with a cluster of symptoms when maintaining sleep hygiene.

  6. Internet-based caregiver support for Chinese Canadians taking care of a family member with alzheimer disease and related dementia.

    PubMed

    Chiu, Teresa; Marziali, Elsa; Colantonio, Angela; Carswell, Anne; Gruneir, Marilyn; Tang, Mary; Eysenbach, Gunther

    2009-12-01

    ABSTRACTThe aim of this study was to assess the usability of a new Internet-based Caregiver Support Service (ICSS) and evaluate its effects on health outcomes of Chinese Canadians who cared for a family member with dementia. Demographic and questionnaire data were collected from 28 participants, and in-depth interviews were conducted with 10 participants. Results showed that non-users reported higher levels of burden post-intervetion, and frequent users showed post-intervention reduction in experienced burden. Traditional beliefs shaped caregivers' needs; also, ethno-cultural-linguistic contexts affected system usability and were associated with usage behaviour. This study indicates that caregivers can benefit from receiving professional support via asynchronous e-mails and a dedicated information web site. The ICSS is a feasible approach for supporting caregivers who prefer an alternative service model. This emerging service requires more research in: enhanced technology design, service delivery models for immigrant caregivers, and evaluation of effectiveness and cost-effectiveness.

  7. [Effects of Family Support Programs for Caregivers of People with Dementia - Caregiving Burden, Depression, and Stress: Systematic Review and Meta-analysis].

    PubMed

    Park, Seyeon; Park, Myonghwa

    2015-10-01

    The objective of this systematic review was to assess the effects of family support programs on caregiving burden, depression, and stress in family caregivers of people with dementia. A literature search was conducted of electronic databases to identify randomized controlled studies with family support programs done between 2000 and 2014. Studies published in English and/or Korean were included for the analysis with search strategies adapted from the Cochrane Dementia and Cognitive Improvement Group. Studies were rated for quality assessment by two independent reviewers using the appraisal checklist developed by Cochrane Reviews and Dissemination. Of 8,334 articles identified in the literature search, full texts of 76 articles that met the inclusion criteria were reviewed and 38 were found to include relevant outcomes. Results from selected studies were pooled in statistical meta-analysis using Review Manager Software and heterogeneity between combined studies was assessed using the Chi-square test. Meta-analysis showed that the effect sizes of family caregiver support programs were small to medium for categories of caregiving burden (Hedge's g=-0.17, 95% CI=-0.30~-0.04), depression (Hedge's g=-0.30, 95% CI=-0.40~-0.20), and stress (Hedge's g=-0.39, 95% CI=-0.52~-0.25). The review results indicate that a support programs can assist family caregivers in reducing their psycho-emotional distress.

  8. Impact of caregiver readiness on outcomes of a nonpharmacological intervention to address behavioral symptoms in persons with dementia.

    PubMed

    Gitlin, Laura N; Rose, Karen

    2016-09-01

    Previous research shows that nonpharmacological strategies may effectively manage behavioral symptoms (agitation, wandering) in persons with dementia and improve caregiver wellbeing. However, strategies depend upon caregivers for their implementation. We examine the impact of caregiver readiness to use nonpharmacological strategies on treatment outcomes. Data were from a randomized trial involving 110 family caregivers in the treatment group which received nonpharmacologic strategies for managing behavioral symptoms. Interventionists rated caregiver readiness to use nonpharmacologic strategies as pre-action (precontemplation, contemplation, preparation) or action at treatment initiation and conclusion. Caregivers in pre-action and action stages by treatment conclusion (16 weeks) were compared on proximal (frequency of, and caregiver upset and confidence with targeted behaviors) and more distal (caregiver burden and wellbeing) outcomes at 16 and 24-week follow-ups. By treatment conclusion, 28.2% (n = 31) and 71.8% (n = 79) of caregivers were rated at pre-action and action respectively. Means for proximal outcomes differed between the groups at 16 and 24 weeks; those at action showed greater improvement on all proximal and distal outcomes. Hierarchical regressions showed significant relationships of readiness to targeted outcomes. By 24 weeks, caregiver readiness predicted lower frequency estimates of targeted behaviors (β = -.180, p = .041) and higher confidence (β = .27, p = .009). Readiness was not a significant predictor of caregiver burden and wellbeing at 16 or 24 weeks. By treatment conclusion, >25% of participants were not activated to use nonpharmacologic strategies. Activated caregivers reported greater decline in distressing behavioral symptoms, and more confidence than non-activated participants. Activation is needed to impact behavioral management but not other caregiver outcomes. Copyright © 2016 John Wiley & Sons, Ltd

  9. 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…

  10. 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…

  11. 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…

  12. 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…

  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. 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…

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

    PubMed

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

    2016-11-01

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

  17. A virtual reality intervention to improve the understanding and empathy for people with dementia in informal caregivers: results of a pilot study.

    PubMed

    Wijma, Eva M; Veerbeek, Marjolein A; Prins, Marleen; Pot, Anne Margriet; Willemse, Bernadette M

    2017-07-10

    Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted. A pre-test-post-test design was used. Informal caregivers filled out questionnaires assessing person-centeredness, empathy, perceived pressure from informal care, perceived competence and quality of the relationship. At post-test, additional questions about TDL's feasibility were asked. Thirty-five caregivers completed the pre-test and post-test. Most participants were satisfied with TDL and stated that TDL gave more insight in the perception of the person with dementia. The simulation movie was graded 8.03 out of 10 and the e-course 7.66. Participants significantly improved in empathy, confidence in caring for the person with dementia, and positive interactions with the person with dementia. TDL is feasible for informal caregivers and seems to lead to understanding of and insight in the experience of people with dementia. Therefore, TDL could support informal caregivers in their caregiving role.

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

    PubMed Central

    Hinton, Ladson; Chambers, Darin; Velásquez, Alexandra

    2010-01-01

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

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

    PubMed Central

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

    2016-01-01

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

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

    PubMed

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

    2015-12-01

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

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

    PubMed

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

    2017-02-01

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

  2. Supporting dementia patients and their caregivers in daily life challenges: review of physical, cognitive and psychosocial intervention studies.

    PubMed

    Nehen, H-G; Hermann, D M

    2015-02-01

    Dementia is associated with multiple daily life challenges that have a major impact for health outcome, affecting both the patients and their caregivers. In this review, the efficacy of physical, cognitive and psychosocial interventions in the treatment of dementia patients is evaluated, and how caregiver education and support may contribute to patient care is analysed. Due to the complex nature of cognitive and psychosocial interventions, their efficacy depends strongly on local settings. Thus, active components of these interventions are not always obvious, even in controlled randomized trials. Successful patient management includes (i) the safekeeping of basic support, (ii) the provision of a stable external milieu that is adjusted to the patients' cognitive resources and (iii) the provision of multimodal therapeutic concepts that are closely adapted to the practical needs of the patients and caregivers. © 2014 EAN.

  3. Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies

    PubMed Central

    Prorok, Jeanette C.; Horgan, Salinda; Seitz, Dallas P.

    2013-01-01

    Background: Understanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population. Methods: We searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and methods from the included studies. We also extracted direct quotes from the primary studies, along with the interpretations provided by authors of the studies. We used meta-ethnography to synthesize the extracted information into an overall framework. We evaluated the quality of the primary studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Results: In total, 46 studies met our inclusion criteria; these involved 1866 people with dementia and their caregivers. We identified 5 major themes: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; and communication and attitudes of health care providers. We conceptualized the health care experience as progressing through phases of seeking understanding and information, identifying the problem, role transitions following diagnosis and living with change. Interpretation: The health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people. Understanding these experiences provides insight into potential gaps in existing health services. Modifying existing services or implementing new models of care to address these gaps may lead to improved outcomes for people with dementia and their caregivers. PMID:24003093

  4. Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies.

    PubMed

    Prorok, Jeanette C; Horgan, Salinda; Seitz, Dallas P

    2013-10-01

    Understanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population. We searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and methods from the included studies. We also extracted direct quotes from the primary studies, along with the interpretations provided by authors of the studies. We used meta-ethnography to synthesize the extracted information into an overall framework. We evaluated the quality of the primary studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. In total, 46 studies met our inclusion criteria; these involved 1866 people with dementia and their caregivers. We identified 5 major themes: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; and communication and attitudes of health care providers. We conceptualized the health care experience as progressing through phases of seeking understanding and information, identifying the problem, role transitions following diagnosis and living with change. The health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people. Understanding these experiences provides insight into potential gaps in existing health services. Modifying existing services or implementing new models of care to address these gaps may lead to improved outcomes for people with dementia and their caregivers.

  5. Effective psychosocial intervention for family caregivers lengthens time elapsed before nursing home placement of individuals with dementia: a five-year follow-up study.

    PubMed

    Andrén, Signe; Elmståhl, Sölve

    2008-12-01

    This study was designed to determine the effectiveness of a psychosocial intervention for family caregivers in delaying nursing home placement of individuals with dementia. The participants comprised 153 family caregivers of persons with dementia who underwent intervention and 155 family caregivers who did not. The intervention consisted of five weekly counselling sessions and a three-month conversation group. All patients with dementia underwent a standardized assessment of cognitive and functional ability. The degree of burden and the subjective health of family caregivers were assessed. Participation continued until the patient moved to a nursing home or died, or until five years of living at home had passed. There were significant delays (6 months) in nursing home placement, and a longer time at home for persons with dementia with adult children as caregivers in the intervention group compared to the control group at follow-up (p = 0.004). A greater delay of institutionalization was found where intervention-group caregivers were daughters (p = 0.028). The proportional hazards regression showed factors associated with nursing home placement to be the family caregiver's influence on intervention (OR = 1.55, p = 0.019), caregiver gender (OR = 0.66, p = 0.033) and the patient's severity of dementia (OR = 1.45, p = 0.002). Family caregiver intervention for adult children was significantly associated with prolonged time to nursing home placement.

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

    PubMed

    Khanassov, Vladimir; Vedel, Isabelle

    2016-03-01

    Dementia case management (CM) in primary care is a complex intervention aimed at identifying the various needs of patients with dementia and their caregivers, as well as the organization and coordination of care. A key element of CM is the collaboration of family physicians with case managers. We conducted a systematic mixed-studies review to identify the needs of the patient-caregiver dyad and the effects of CM. We searched MEDLINE, PsycINFO, and EMBASE up to October 2014, regardless of the study design. Our main outcomes were needs of patients and their caregivers and the effects of CM on these needs. We used narrative syntheses to develop a taxonomy of needs and to describe the effects of CM on those needs. We used meta-analysis to calculate the prevalence of needs and the standardized mean differences to evaluate the effects of CM on the needs identified. Fifty-four studies were included. We identified needs of the patient-caregiver dyad and needs of the patient and caregiver individually. CM addressed the majority of the identified needs. Still, some very common needs (eg, early diagnosis) are overlooked while other needs (eg, education on the disease) are well addressed. Fully establishing the value of CM is difficult given the small number of studies of CM in primary care. There is good evidence that case managers, in collaboration with family physicians, have a pivotal role in addressing the needs of the patient-caregiver dyad. © 2016 Annals of Family Medicine, Inc.

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

    PubMed Central

    Khanassov, Vladimir; Vedel, Isabelle

    2016-01-01

    PURPOSE Dementia case management (CM) in primary care is a complex intervention aimed at identifying the various needs of patients with dementia and their caregivers, as well as the organization and coordination of care. A key element of CM is the collaboration of family physicians with case managers. We conducte