Portland State University. School of Urban and Public Affairs
David L. Morgan
Date of Publication
Doctor of Philosophy (Ph.D.) in Urban Studies
Caregivers, Alzheimer's disease -- Patients -- Home care, Alzheimer's disease -- Patients -- Long-term care
1 online resource (4, vii, 169 pages)
When family members no longer have the capacity to meet Alzheimer's Disease (AD) caregiving demands at home, a move to a nursing home or other formal care facility becomes the only solution.
Recognizing this as a time of transition, three research questions were identified: (1) What do family caregivers to AD individuals experience as they shift their caregiving from home to formal care settings? (2) How does caregiving in formal care differ from caregiving at home? and (3) How do family caregivers perceive the relationships that develop between families and formal care staff? Specific attention was paid to the experiences of spouses and adult children.
Using a qualitative approach, two specific bodies of data were investigated. First, transcripts of a series of 30 focus groups with 179 caregivers, and second, ten follow-up interviews were analyzed.
Both spouses and adult children overwhelmingly identified physical exhaustion and often emotional exhaustion as the pervasive common experience. After reaching this state, caregivers identified the pivotal nature of events in contributing to placement. These kinds of events turn out to be more like turning points than crises.
Caregivers in this study identified five themes that were influential in their decision-making process. In order of their importance to the caregivers, they were: events, the health care system, caregiver-care receiver relationship, support, and options and availability.
A male spouse caregiver was likely to cite a turning point event centered on an incontinence problem, while for a female spouse caregiver, it was an AD safety issue. The health care system was usually a negative influence and served to delay the placement decision. Immediately, after placement, family caregivers noted shifts in control, involvement and personal reorganization.
Family caregivers frequently noted the development of a caregiving relationship with staff. The individuals whom the family caregivers mentioned most often were the aides. Their bottom line was that staff deliver quality care, which they equated with caring about the resident rather than only taking care of them.
The findings from this study have implications for theory development, family caregivers, formal care staff, and health care policy.
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Duncan, Marie Theresa, "Alzheimer's Disease Caregivers: The Transition from Home Care to Formal Care" (1992). Dissertations and Theses. Paper 3228.