Introduction: Hispanics/Latinos (H/Ls) are significantly underrepresented in Alzheimer's disease (AD) research participant samples. This exclusion limits our interpretation of research findings and understanding of the causes of brain health disparities. The Engaging Communities of Hispanics/Latinos for Aging Research (ECHAR) Network was created to engage, educate, and motivate H/Ls for participation in brain aging research by addressing several barriers to inclusion, including health literacy and AD-related communication.
Methods: We used a novel community-engaged method-Boot Camp Translation (BCT)-to translate medical jargon into action-based, community-relevant messages. H/L community members (n = 39) were recruited from three cities to work with local research teams and co-develop culturally responsive AD-related messaging. BCT meetings leveraged various techniques to identify key messages, the target audience for the messages, and methods to disseminate these messages. Themes were constructed collaboratively between BCT facilitators and community members as the group iteratively refined the conceptual framework and language for the main messages, with the goal to make AD messaging accessible for H/L community members.
Results: H/L community members showed significant improvements in subjective understanding (Cohen's d = 0.75; P < 0.001) and objective knowledge of Alzheimer's disease (Cohen's d = 0.79; P < 0.001) at BCT completion. H/L community members identified key messages that converged for all three cities. These were related to reducing stigma, emphasizing brain health and risk mitigation, and acknowledging the impact of AD on multi-generational families/households. Participants also recommended sharing these messages with H/Ls across the lifespan using multi-media avenues.
Discussion: The collaborative efforts identified culturally responsive and community-relevant messaging that may help address health literacy barriers contributing to AD-related disparities in H/L communities.
Highlights: Hispanics/Latinos are underrepresented in Alzheimer's disease and related dementias (ADRD) research despite increased risk.Limited ADRD health literacy may act as a recruitment barrier.Boot Camp Translation (BCT) is a process that targets health communication.We carried out BCT in three cities to co-develop ADRD messaging.Results highlight regional similarities and differences in ADRD communication.
Keywords: community‐based participatory research; health disparity; minority health; research subject recruitment.
© 2023 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals LLC on behalf of Alzheimer's Association.