Friday, 14 January 2005 - 10:00 AM

This presentation is part of: Family Caregiving with Older Adults

Family Caregivers of Older Persons with Dementia Living in Rural Communities

Overview. There is little published research regarding the experiences of family members living in rural communities who provide care and assistance to older persons suffering from dementia. This study, funded by a grant from the Agency for Healthcare Research and Quality, had the following aims: 1) to test the feasibility and utility of a research methodology designed to locate and obtain data from family members who provide care to rural dwelling elders suffering from dementia; 2) to better understand the challenges faced by these caregivers, and to measure their feelings of stress and burden, 3) to identify their needs for formal services, and 4) to compare the situations and experiences of African American and White family caregivers. Methodology. Data were collected by telephone, from 128 family caregivers (half African American and half White), using a structured questionnaire instrument. A computer assisted random digit dialing procedure was used to locate and recruit eligible participants. The study variables examined were drawn from a well recognized caregiver stress model and included caregiver demographics; caregiver stressors such as patient behaviors, severity of dementia, and patient functional ability; stress mediators such as formal and informal social support, caregiver coping styles, and religiosity; and the outcome variables quality of life and caregiver burden. Findings. Caregivers in the study sample tended to be married, lower income women (mean age 53) who were caring for a parent (mean age 77) with cognitive problems. These caregivers provided their cognitively impaired parents with moderate levels of assistance with tasks related to the activities of daily living, and received minimal assistance from formal human service agencies. Caregivers reported moderate levels of stress and burden, and almost half rated their health as fair or poor. Surprisingly, 42% of the caregivers rated their quality of life as high. As expected, many of these southern rural caregivers reported using religion as a major coping strategy. The only significant differences found between African American and White caregivers were their reported scores on two subjective burden subscales (social/personal restrictions and physical/emotional health). Implications. This study has shown the utility and effectiveness of computer assisted random digit dialing to identify and recruit members of a relatively hidden and difficult to otherwise contact population of caregivers: family members who provide care and assistance to older persons with dementia who live in rural communities. This technique, used in conjunction with a cross-sectional telephone survey approach, has been a useful, cost effective means of obtaining data about the circumstances and challenges faced by these geographically isolated caregivers. The results of the survey suggest that at least in our sample there were few differences between the African American and White family caregivers in this study. However, given the exploratory nature of this study, and its lack of external validity, more research is needed to better understand the similarities and differences between these two groups of caregivers.

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