Family caregivers of people with dementia

Primary Dementia Collaborative Research Centre and School of Psychiatry, University of New South Wales, Sydney, Australia.
Dialogues in clinical neuroscience 02/2009; 11(2):217-28.
Source: PubMed

ABSTRACT 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.

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Available from: Marika Donkin, Jul 31, 2015
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    • "In order to understand differences in resources for family caregivers of individuals with AD, a closer look at racial/ethnic differences in correlates for positive experiences of caregiving contexts is essential. A few existing studies have addressed the importance of cultural context in family caregiving of Alzheimer's patients to reduce caregivers' stress and care recipients' nursing home admissions (Brodaty & Donkin, 2009; Spillman & Long, 2009). One pertinent study examined differences in positive aspects between African American and Caucasian caregivers with the Resources for Enhancing Alzheimer's Caregiver Health (REACH I) intervention (Roff et al., 2004). "
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    ABSTRACT: Taking a socioecological perspective, this study assessed the relationship of intrapersonal, interpersonal, and organizational factors to positive aspects of caregiving (PAC) for 642 dementia caregivers by racial/ethnic group from the baseline data of the multisite Resources for Enhancing Alzheimer's Caregiver Health II (REACH II) intervention. Nine intrapersonal indicators, 4 interpersonal indicators, and 12 organizational indicators were used. Blocked-multiple regression analyses by three racial/ethnic groups were computed to examine significant factors related to PAC among caregivers after controlling for memory and behavioral problems. Data showed a significant difference in PAC and significantly different indicators of PAC by racial/ethnic group. Hispanic caregivers reported the highest level of PAC while White participants showed the lowest scores on the measure of PAC. Education, marital status, and using formal transportation services were significant predictors for PAC among Hispanic caregivers; age, education, caregiving duration, and received social support were significant for PAC among African American caregivers; and sex, education, being a spousal caregiver, satisfaction with social support, using help from homemaker and visiting nurse services, and participating in support groups were significant among White caregivers. Findings indicate that PAC varies significantly across the three studied racial/ethnic groups of family caregivers and that intrapersonal, interpersonal, and organizational factors relate uniquely to PAC. Additional investigations of PAC could serve an important role in the development of family caregiving supports and services.
    Aging and Mental Health 07/2015; DOI:10.1080/13607863.2015.1068739 · 1.75 Impact Factor
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    • "Up to 88 % of person with dementia show behavioural and psychological symptoms of dementia (BPSD) such as wandering, delusions, anxiety, depression and aggression (Brodaty et al. 2003). These symptoms add challenges for caregivers to manage daily care activities and are associated with higher levels of burden if caregivers are not prepared to manage BPSD or they are unable to utilize services such as the Dementia Behavioural Management Advisory Service (DBMAS) for advice on the management of BPSD (Brodaty and Donkin 2009; Huang et al. 2012). Social and cultural factors have a strong influence on the motivation of the caregiver, attitudes towards dementia, their coping strategies and help seeking behaviours in dementia care (Chan 2010; Xiao et al. 2013). "
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    ABSTRACT: The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia.
    Journal of Cross-Cultural Gerontology 05/2015; DOI:10.1007/s10823-015-9264-y
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    • "Persons with dementia (PWD) experience memory loss, compromised communication skills and impaired insight which affect their ability to participate in relationships and decisions regarding personal care and treatment (Alzheimer Society of Ontario, 2012). These lost capacities must be compensated for and it is family caregivers, most commonly spouses of PWDs, who assume this responsibility (Brodaty & Donkin, 2009; Sadavoy, Wesson, & Nelles, 2012). Most literature to date focuses on interventions to decrease negative aspects of caring for PWD, like caregiver burden and isolation (Lilly, Robinson, Holzan, & Bottorff, 2012); however, some research has examined positive aspects of caregiving. "
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    ABSTRACT: Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses' participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers' needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions. © The Author(s) 2015 Reprints and permissions:
    Dementia 02/2015; DOI:10.1177/1471301215570680
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