Persons with Dementia and their Extended Family Caregivers: Service Use, Barriers and Needs

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PROJECT SUMMARY/ABSTRACT Despite changes in the structure of contemporary families, the dementia caregiving literature provides limited information and insights about care situations and circumstances beyond those which involve spouses and adult children/children-in-law caregivers. Little is known about the caregiving responsibilities and practices of a growing number of extended family caregivers (i.e., grandchildren, siblings, nieces/nephews, step-kin) who assume the role of primary caregiver. The purpose of this research is to increase understanding of how extended family caregivers manage care for older persons with Alzheimer's disease or other dementias (PwD) and the relationship between their care practices and PwD outcomes. Specifically, this project aims to learn about the strategies extended family caregivers use to manage the demands of caregiving, barriers they face when seeking and using informal support and home and community-based services (HCBS), and how care recipients' needs, caregivers' non-care responsibilities, and HCBS use influence the well-being of the PwD and caregivers. The research is guided by a life course perspective and is grounded in a health behavior model that identifies predisposing, need, and enabling factors to contextualize service utilization and well-being outcomes for PwD and the caregiver. The research employs a mixed-methods design to provide an in-depth understanding of the issues faced by extended family caregivers and their use of informal help and HCBS to assist with the care of the PwD. A telephone interview that includes open-ended questions and standard items and structured measures followed by a semi-structured 8-day diary interview focused on the daily experiences with HCBS will be administered to 240 extended family members who serve as the primary caregivers of a PwD living in the community (i.e., non-residential settings), plus 120 nuclear family caregivers (i.e., adult children and spouses) for comparison purposes. Descriptive, multivariate, and qualitative data analysis techniques will be used to address the research questions and study hypotheses. Study findings will extend scientific knowledge about extended family caregivers and their use of informal help and HCBS beyond that which has emerged from the literature focused on nuclear family caregivers and provide a much more elaborated conception of caregiving that acknowledges the transformations occurring in family life today. Understanding family circumstances and the specific responsibilities and care practices of extended family caregivers, challenges and barriers they face when accessing HCBS, and the resultant effect on the well-being of the PwD as well as their own well-being will provide new and highly relevant information for HCBS and programs designed to support family caregivers.