Persons With Dementia and Their Extended Family Caregivers

Persons With Dementia and Their Extended Family Caregivers: Service Use, Barriers and Needs

Immediate family members provide the vast majority of care for relatives with Alzheimer's disease, but their availability as caregivers is shrinking. Societal trends, such as declining birthrates and rising divorce rates among middle-aged and older adults raise questions about the sustainability of traditional approaches to family care. At the same time, greater longevity and various social movements, legal and policy changes, and social problems have led to a much broader array of family structures. Older adults now have expanded family boundaries beyond the level of the nuclear family. Their lives are embedded and closely linked to their adult grandchildren, siblings, nieces/nephews as well as non-biological kin, including step-kin- any of whom may become their primary caregiver. An examination of the experiences of these extended family caregivers (CG) and the home and community-based services (HCBS) they use and need to assist with their relatives' care, as well as barriers to service use, will inform delivery of HCBS aimed at ameliorating care-related stressors and improving the quality of life of persons with Alzheimer's disease and other dementias. The study aim is to learn about different relational types of extended family members' paths to dementia caregiving, how they manage their care responsibilities, what HCBS and informal support they use to meet the needs of the person with dementia (PwD), and the resultant effects on the PwD and their own well-being. A mixed-methods design will be used to understand the issues faced by the CG and their use of HCBS to care for the PwD. Using an extensive network with organizations in Virginia to identify extended family CG, a telephone interview comprised of open-ended questions, standard items and structured measures, followed by a semi-structured 8-day diary interview of daily experiences with HCBS, will be administered to 240 extended family members who serve as the primary CG of a PwD living in the community. Study findings will advance scientific knowledge about extended family CG and their use of HCBS beyond that which has emerged from the literature focused on nuclear family CG, providing a more elaborated conception of caregiving that acknowledges the transformations occurring in family life today. This expanded understanding will provide new and relevant information for HCBS/programs designed to support family CG.

Persons With Dementia and Their Extended Family Caregivers

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