For the Community, by the Community: Advancing Research for Latino Communities in Dementia Care Following the Guidance of Latino Older Adults

We outline a practical approach to engaging Latino communities in dementia care research by establishing a community advisory board (CAB). Acknowledging the historical underrepresentation of Latinos in health research, we aimed to ensure that Latino perspectives and concerns were central to our research endeavors. As an initial step we adapted the Patient Advisor Toolkit 1: Orientation for Patient Advisory Committees (PAT-1) created by the Wisconsin Network for Research Support at the University of Wisconsin - Madison School of Nursing to the needs of Latino/a/e/x populations. We describe the CAB formation process, from initial outreach to community members and organizations to the recruitment, engagement, and retention of CAB members. CAB members provided guidance on the legibility and clarity of study materials and assisted with strategic planning for outreach initiatives related to healthy aging, brain health, and dementia risk reduction. Our enduring connections with CAB members and community partners have ensured that our research activities address community needs, provide benefits to the community, and inform our approach to connecting with Latinos in a culturally appropriate way. To foster successful CAB engagement and retention, we recommend 1) building trust with partners, 2) establishing clear expectations, 3) ensuring inclusive communication formats, 4) maintaining open communication, 5) offering honoraria and recognition, 6) affirming CAB members' contributions, 7) understanding power dynamics between the academic institution and the community, and 8) ensuring adequate staff and programmatic support. This approach fosters trust-based relationships and meaningful engagement that advances health equity.