Studying What Matters: South Texas Community-Driven Dementia Research Priorities

Vollständiger Abstract

Worum geht es in dieser Arbeit?

South Texas has among the highest dementia prevalence rates in the United States, yet communities in the region remain consistently underrepresented in dementia research. Aligning research studies with what matters to communities most impacted by dementia is critical in addressing the crisis of research exclusion. This participatory study sought to identify community-driven dementia research priorities grounded in the experiences and needs of South Texas residents impacted by dementia. A two-year community-engaged study was conducted in partnership with a Community Council composed of individuals living with dementia, family caregivers, community health workers, and community-serving professionals. A plática program model was co-developed and implemented to elicit lived experiences with dementia and inform the development of a priority-setting survey. The resulting survey included 21 research topics grouped into four themes: (1) awareness of dementia, (2) experiences living with dementia, (3) families caring for someone living with dementia, and (4) resources to support families. Respondents ( N = 152) rated each topic on a 1–10 importance scale and selected their top two priorities by theme. Descriptive statistics were used to identify highly rated and frequently prioritized topics. Importance ratings were uniformly high across all topics (range: 8.44–9.39). Ranking data revealed clear priorities within themes wherein respondents prioritized timely diagnosis, improved provider communication, behavioral symptom management using non-pharmacological approaches, co-caregiving strategies, and system-level resources such as financial and legal planning supports. These priorities were largely consistent across respondent subgroups. The participatory approach of this study enhances the relevance of findings and demonstrates the value of community-engaged methods for shaping research agendas. These community-defined priorities offer timely direction for researchers, funders, and policymakers aiming to reduce dementia disparities in South Texas and improve the equity, translational potential, and impact of future research.