Applying Community Based Participatory Practices to Recruitment for the Asian Cohort for Alzheimer’s Disease

Abstract

AbstractBackgroundAlzheimer’s disease (AD) involves many risk and protective factors encompassing genetics and lived experiences. Despite disease heterogeneity, inclusion of Asian ancestry lags. In the National Alzheimer’s Coordinating Center (NACC) registry, only 2.5% of patients are of Asian ancestry. Lack of inclusion is even greater in the Alzheimer Disease Genetic Consortium, where Asian‐Americans represent only 0.7% of the population, 7‐fold less than the population (5%) of Asian‐Americans over 65. Cumulatively, disparity in research negatively impacts understanding of AD risk and protective factors and led to the formation of the Asian Cohort for Alzheimer’s Disease (ACAD) to address this lack of inclusion.MethodGiven the paucity of Asian American and Canadian older adults in AD research, ACAD applies a community‐based participatory research (CBPR) program to recruit participants, involving research‐community‐medicine partnerships to facilitate both better health outcomes and inclusion in research. A comprehensive program of brain health education, destigmatization, and bridging access to care are important aspects developed through ACAD Outreach and in Toronto. Extensive partnerships also help drive greater awareness about AD and related dementias to ensure a thriving dialog in the community.ResultSince September 2021, the Toronto site has had interest from over 300 individuals of Chinese descent, successfully prescreened 2/3 of those and have thus far enrolled half in the study. Of completed participants, ∼50% are cognitively healthy, 20% with AD and 27% MCI, and 2/3 of participants have provided blood, despite societal reticence for blood donations. To achieve recruitment, we conducted multiple community events, including 15 virtual seminars, in addition to working with medical, long‐term care and community center partners, and using traditional print and social media. Tools to effectively community brain health education and ACAD were developed, including overcoming challenges to participation ensuring participant comfort. This has led to high referral rates (20%) indicating strong traction in the community.ConclusionACAD has demonstrated feasibility in recruitment of voluntary participants to study the risk and protective factors of AD amongst Asian populations and will continue to recruit as well as analyze data, providing this information back to the community as part of the CBPR tenet.