Approaches to Optimize Engagement of Lower Socioeconomic Status Family Caregivers of Black Older Adults Living With Dementia in Advance Care Planning Research

Purpose: Poor recruitment and retention of lower socioeconomic status (SES) family caregivers of Black people living with dementia (PLWD) persists and contributes to negative outcomes. Therefore, the current study was conducted to address recruitment and retention shortcomings by illustrating a novel community-based participatory approach to designing a culturally responsive advance care planning (ACP) intervention to engage lower SES family caregivers of Black PLWD in the ACP process. Method: A novel two-phased exemplar study was used to recruit and retain Black caregivers, maximizing flexible scheduling and interpersonal connections. Consistency, continuity, preparation, and preference along with study-specific cultural responsiveness and competency, enhanced communication, and flexibility and relevant timing engaged caregivers over time. Results: Participants and research team members reported positive study experiences. Retention rate across both phases for current caregivers was 80% and 59% for former caregivers. Conclusion: Strategic recruitment and retention amendments can ensure research quality, social justice, and health equity.