The meanings african American caregivers ascribe to dementia-related changes: The paradox of hanging on to loss

Purpose of the Study: Using an interpretive phenomenological approach, this study explored the meaning African American (AA) caregivers ascribed to the dementia-related changes in their care-recipients. Design and Methods: Data were gathered in this qualitative study with 22 in-depth interviews. Eleven AA caregivers for persons with dementia, living in the Pacific Northwestern United States, were interviewed twice. Four caregivers participated in an optional observation session. Results: Analysis based on the hermeneutic circle revealed that, for these caregivers, the dementia-related changes meant that they had to hang on to the care-recipients for as long as possible. Caregivers recognized that the valued care-recipients were changed, but still here and worthy of respect and compassion. Ancestral family values, shaped by historical oppression, appeared to influence these meanings. Implications: The results from this study suggest that AA caregivers tend to focus on the aspects of the care-recipients' personalities that remain, rather than grieve the dementia-related losses. These findings have the potential to deepen gerontologists' understanding of the AA caregiver experience. This, in turn, can facilitate effective caregiver decision making and coping.