African American Dementia Caregivers

Abstract

Differences in ethno-cultural perspectives have been previously suggested as the source of variation among ethnic groups regarding their approaches to dementia family caregiving. This study explored the perceptions and experiences that African American caregivers of family members with dementia encountered on their journey toward obtaining a diagnosis of dementia for their loved ones. An overall theme of respect emerged from a focus group session with seven family caregivers. Reports of respecting older family members through `normalization', thereby delaying evaluation for dementia, then encountering a lack of respect from health care providers when one was finally sought, created a duality of respect vs disrespect. This tension constituted a subtle but profound form of caregiver stress that may be unique to African American caregivers, and one that has not been considered in standardized measures. Findings inform providers about important issues to consider when working with and studying dementia caregiving among African American families.