Partnering with Latino communities for dementia research: a mixed-methods study of engagement

Latinos are disproportionately affected by dementia but remain underrepresented in dementia research. Engaged research approaches, characterized by co-leadership between academic and community partners, can strengthen the representativeness, responsiveness, and impact of scientific evidence. There is a need to better understand how methods of engagement may deepen partnerships with underrepresented communities. This study examined engagement with a Community Council of research partners who were co-conducting dementia research among Latino communities in South Texas.

An explanatory sequential mixed-methods study assessed Council member engagement over two years. The Research Engagement Survey Tool (REST), measuring engagement quality and quantity across eight engagement principles and levels, was administered at three time points. Repeated measures ANOVA and pairwise t-tests assessed changes; Bonferroni correction was applied for significance. Semi-structured interviews with a Council member subset (N = 10) were analyzed using thematic content analysis and integrated with survey findings.

Council members (N = 13), including caregivers, persons living with dementia, community health workers, community organizations, clinicians, and dementia researchers, completed all survey administrations. Overall REST quality scores increased from baseline to study end (mean 4.18 to 4.77 on a 1-5 scale; p=.003). Significant increases after Bonferroni correction were observed in: focusing on community perspectives (p=.008), valuing partner input (p=.015), co-learning and capacity building (p=.017), fostering collaborative partnerships (p=.015), and involving partners in dissemination (p=.013). When examined by engagement level, 'collaboration' remained highest across all time points; the largest increases occurred in 'partnership' (quality +6.9; quantity +6.8, each out of 20). Qualitative findings reinforced survey results across three themes: (1) establishing partnerships through diversity, shared experiences, and leadership; (2) building capacity through co-learning, trust, and being heard; and (3) sustaining the work. Together, findings illustrate a trajectory in which structural diversity and inclusive processes produced stronger trust, partnership, and sustained community leadership.

The Council model can effectively support and deepen engagement with Latino community partners when structured around cultural values and community-centeredness. Through the Council's structural diversity, relational processes, and shared leadership, engagement strategies strengthened trust and fostered a sustained partnership. These findings contribute to the engagement sciences and provide a model for reducing underrepresentation in dementia research.