Community partnerships to implement a stress intervention for African American family caregivers for dementia patients

We report on the design phase of a research project testing a stress intervention targeted to African American dementia family caregivers, an underserved and hard-to-reach population; this process also produced useful strategies for recruitment and research implementation. Input from five focus groups (with (n=27) African American family caregivers and professionals) shaped a testable, culturally appropriate psychoeducation program for these caregivers. We elicited participants' responses to a proposed curriculum based on an existing evidence-based program. Participants reflected on six domains: 1) the caregiving situation, 2) dementia knowledge and information sources, 3) caregiving rewards, 4) cultural perspectives on caregiving, 5) coping mechanisms, 6) Educational content. Crosscutting themes concerning guilt, family dynamics, and isolation emerged. The resultant program focused on developing caregiving skills and knowledge and also cast the caregiving role in the context of positive and negative effects of community structures (family, church, etc.) on caregivers' coping. The curriculum was reshaped after each group, based on the group's input. A prototype program was formatively tested with (n=25) caregivers and revised accordingly. This culturally-salient program, now in randomized trial, comprises seven 2-hour sessions. The design phase relied on engaging community contacts (for recruitment) and the cultural congruence of participants and focus group and educational program leaders. Focus group participants made suggestions about strategies for outreach and recruitment and the educational tools that might be effective for African American family caregivers, stressing issues of access. These results offer strategies for reaching and collaborating with underserved communities both in practice and in research.