Key Themes in Black Dementia Caregiver Support: Linking Resources, Peer Communication, and Faith Community Outreach

Abstract

We describe content analysis and present thematic visualizations using semi-structured interviews from participants of the African-American Alzheimer’s Caregiver Training and Support 2 (ACTS 2) Project in Florida. This telephone-based program provides faith worker-led skills training and support for distressed AA dementia caregivers. It facilitates integrated care and reduces dementia stigma through faith community partnerships. ACTS 2 serves North and Central FL. ACTS 2 uses mixed assessment methods including standardized questionnaires of depression, caregiver appraisals of burden and reward, social support and health status; and narrative data on various facets of program delivery and participant satisfaction. Evaluation uses prospective cohort designs, following participants from recruitment past completion. For this thematic analysis, we examined final thesis manuscripts for all 11 collaborating students who worked on ACTS 2 in the course of completing their MS degrees in the Bridge to Clinical Medicine program at FSU College of Medicine. We imported the thesis manuscripts into NVivo qualitative coding software and performed a series of content analyses. Results were cross-checked through manual review of student theses. Our content analyses highlight how ACTS 2 provides skills building and spiritual support for distressed AA dementia caregivers. We showcase thematic visualizations of how program success hinges on linkage of care resources across domains, phone communication to reach people in diverse geographic areas, and sustained outreach through relationships with clergy. We also describe implications for the scalability of ACTS 2 within and beyond Florida, and explore how this model can enrich the lives of AA dementia caregivers nationwide