Advancing the Science of Recruitment and Retention in Alzheimer’s disease Clinical Studies among Spanish‐speaking immigrant Latino/Hispanic communities

Abstract

AbstractBackgroundWhile Latinos/Hispanics living with Alzheimer’s are projected to grow 832% by the year 2060, they make up approximately 7.5% of research participants across 32 federally funded Alzheimer’s Disease Research Centers. Our previous work presented at AAIC 2020 highlighted how the Human Connectome Project’s study design automatically excluded 94% of potential Latino/Hispanic community members in Southern California due to language. As a result, the individuals recruited and retained were mostly bilingual white Latinos/Hispanics with higher education and occupational attainment and high levels of research literacy, resembling the well‐known WEIRD sample (e.g., White, Educated, Industrialized, Rich, and Democratic). In the current study, we sought to understand the role of Latino/Hispanic community stakeholders in involving community members more representative of Southern California (Spanish‐Speaking, low income, immigrants, Afro‐Latinx, Indigenous Natives).MethodDuring the COVID‐19 pandemic, we recruited 11 community stakeholders from Southern California to complete a 1‐hour semi‐structured interview via an HIPPA compliant zoom platform. All participants were involved in Latino healthy aging and Alzheimer’s Disease organizations. We conducted a preliminary reflexive thematic analysis from the interviews.ResultThe overarching theme surrounded the exclusion of Latinx/Hispanic community stakeholders from leadership conversations about Alzheimer’s disease clinical research priorities. The systematic exclusion of community stakeholders from leadership tables lead to non‐inclusive community engagement and research practices. They were solely used for outreach (“find me your people”), as well as for the translation of recruitment materials, and/or for the sole administration of poorly translated and non‐culturally adapted outcome measures. These practices lead to the exclusion of Spanish‐speaking, immigrant communities through language and cultural isolation, triggering negative cognitive schemas and negative beliefs from previous traumatic experiences of exclusionary practices in the United States.ConclusionOur findings highlight how the Alzheimer’s disease clinical research enterprise continues to propagate multi‐level systematic exclusionary practices, accounting for the lack of equitable representation of high‐risk Latinx/Hispanic communities in research. To advance the science of recruitment and retention, and brain health equity, we need to systematically employ transformative community engagement and inclusive science models where Latinx/Hispanic community stakeholders are essential in decision‐making research process with equal‐power and shared governance.