A qualitative analysis was performed on responses of 51 participants to open-ended questions about the experience of being family caregivers for a loved one affected by Alzheimer's disease. Participants had been in the caregiver role for at least eight years. Results indicated a pattern of adapting successfully or unsuccessfully to the caregiver role, experiencing initial caregiver burden, finding relief in social support when available, and long-term distress or long-term positive change. Memories and feelings were strong about individuals and institutions that had been helpful or indifferent many years earlier as the caregivers struggled to cope with their unplanned predicament.
Conflicting findings have been reported on whether attending an Alzheimer's disease (AD) support group is a positive or negative experience. As a result, the present study provides the results from a retrospective analysis of the effects of caregiver support groups over an eight year period. The results suggest that those in distress are the most likely to attend support groups, and the benefits of attending become more apparent over time. The primary reason given by participants for having stopped attending support groups was the lack of a program for those who no longer are active care providers. Many of these same individuals indicated a marked interest in caregiver issues, but felt that most of the information provided was for those providers early in the care process. Thus, support groups that consider caregiver transitions may prove of interest.
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