How Researchers Can Build Research‐Strengthening Partnerships Through Centering the Lived Experiences of Self‐Identified Members of African American/Black Communities

Abstract

AbstractBackgroundPersons who self‐identify as Black or African American comprise more than 14% of the population in the United States of America, with Black persons populating the entire globe. Notably, heterogeneity and within‐group diversity exist, especially due to geographic location, migration, and immigration. However, researchers continue to conduct studies that do not adequately represent this critical group of individuals with a higher risk of Alzheimer’s disease and related dementias (ADRD) coupled with salient experiences of negative structural and social determinants of health. ADRD research requires diverse participant perspectives to ensure that research findings – from educational materials to lifestyle interventions and pharmacologic discoveries are safe and relevant to all of us. This presentation will feature a panelist with both lived dementia experience and who identifies as African American/Black. The panelist will provide their perspectives and input to identify and address barriers, and amplify facilitators of ADRD research participation.MethodResearchers at the Rush Alzheimer’s Disease Center will work with community partners to identify the panelist to share their perspectives regarding such topics as ADRD diagnosis, care, and research participation. The panelist will also share their input on how researchers can build better partnerships within African American/ Black communities and subsequent study participants and partners.ResultThis session will benefit researchers and the field of ADRD by offering the opportunity to hear and understand the lived experiences of a member of the African American/Black community, and discuss strategies to meaningfully engage with demographically diverse communities and their heterogenous members.ConclusionThe voices of individuals identifying as African American/Black are essential to consider and incorporate throughout the research process ‐ from determining the research purpose and discussing research priorities to study conduct and finding dissemination ‐ and addressing challenges to facilitate demographically diverse participation in ADRD research.