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Alzheimer's disease and family caregiving: loss of the family caregiver role

Date

2010

Authors

Gentz, Audra, author
Fruhauf, Christine A., advisor
Quijano, Louise, committee member
Oltjenbruns, Kevin, committee member

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Abstract

Family caregiving for adults with Alzheimer's disease is an important issue that affects many individuals. When caregivers are no longer caregiving, the loss of the role may impact their life. However, it is unknown in the gerontological literature how the loss of the caregiver role is experienced. The purpose of this research was to understand the loss of the caregiving role of family caregivers who provided assistance to individuals who had Alzheimer's disease. A total of 21 participants, age 41 to 88, participated in one focus group (i.e., three focus groups were conducted with 5 to 10 participants) addressing the loss of their caregiver role. Many participants (i.e., n = 18) were female and were caring for a parent/in-law (i.e., n = 14). A third of caregivers provided care for 5 to 8 years. Qualitative data analysis techniques were used to develop themes and codes to understand the experiences of previous caregivers. Two themes emerged from the data: caregiving journey and standing at a cross-road. Data focusing on the caregiving journey addressed rewards and stumbling blocks of caregiving during and after active caregiving. For example, participants discussed their tools and feelings associated with caregiving. Standing at a cross-road illustrated four sub-themes: unforeseen happenings, unexpected phase of caregiving, caregiver's sense of self, and grief/sadness. Future researchers should consider examining gender differences and the loss of the caregiver role for children versus spouses. Professionals should consider developing support groups or educational materials focusing on the loss of the caregiver identity.

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Department Head: Lise Marie Youngblade.

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