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

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

African-American Lay Pastoral Care Facilitators’ Perspectives on Dementia Caregiver Education and Training

The African-American Alzheimer’s Caregiver Training and Support Project 2 (ACTS 2) is a faith-integrated, skills-training and support program for distressed African American family caregivers of persons living with dementia across Florida. Caregivers participate in a 12-week, telephone-based, skills-building and support program led by faith community workers (i.e., lay pastoral care facilitators) who provide volunteer services to their denominations. In this case study, we examined facilitators’ perspectives and recommendations for supplementary audiovisual and written training materials to optimize group process and goal-setting skills. Utilizing a qualitative approach, we explored facilitators’ needs, experiences in using current training materials, and recommendations for supplementary education. Data were collected through a telephone-based, focus group interview with nine ACTS 2 facilitators deploying grounded theory techniques. We identified six themes: personal reflections on facilitator roles and responsibilities, satisfaction with existing written materials, desire for supplementary audiovisual training materials, desire for additional training on data management and reporting, importance of peer support, and fostering a faith-integrated culture within the program. Our findings underscore the importance of engaging African American faith communities in fostering dementia caregiving skills training and support. We further highlight the implications of providing community-based training for African American facilitators to foster caregiver emotional well-being and physical health