‘Walk a mile in my shoes:’ African American caregiver perceptions of caregiving and self-care

Abstract

ABSTRACT African American Alzheimer’s disease and related dementia (ADRD) family caregivers are understudied in intervention research with discrepant evidence existing on their mental and physical health outcomes. The stress toll of ADRD caregiving, coupled with the well-documented health disparities for African Americans, place these caregivers at higher risk for morbidity and mortality. Objectives: The purpose of this study was to explore African American ADRD family caregivers’ perceptions of caregiving and self-care. Design: Qualitative descriptive study based on individual, one-time, semi-structured interviews from a purposeful sample of current/former African American ADRD community-dwelling family caregivers. Participants agreed to either face-to-face or telephonic interviews between 60 and 90 minutes in length. Results: Twenty-one caregiver interviews were conducted with primarily adult children (mean age = 62.61 (SD = 12.88); 81% completed college; 57% women). Content analysis yielded three major themes: Stressors, Resources, and Coping. The results demonstrate a complex interaction of sociocultural and environmental stressors and perceptions of resources that influence the coping strategies adopted by caregivers to navigate their caregiving experience. Conclusions: These findings suggest a broadened perspective to further inform the development and testing of interventions to address the health outcomes and caregiving needs of African American ADRD caregivers.