Factors Influencing the Participation of Black Older Adults in Clinical Trials on Dementia

TL;DR

This study explores why Black older adults participate in dementia clinical trials, highlighting barriers and facilitators from their perspective.

Contribution

The study provides insights into barriers and facilitators for Black older adults' participation in dementia clinical trials from their own perspectives.

Findings

Barriers include limited trust and logistical constraints.

Facilitators include race-concordant researchers and understanding the importance of participation.

Strong community-trialist connections and partnerships are crucial for inclusion.

Abstract

Black communities are twice as likely as Whites to have dementia and represent 13% of the US population, constituting only 5% of participants in clinical trials on dementia. The goal of this study was to identify barriers and facilitators to participating in the a clinical trial on dementia from the perspective of Black older adults who agreed to be referred to the trialists who were testing a drug to treat Alzheimer’s disease. Between 5/1/2023-1/31/2024, we raised awareness of Black communities about the option of being referred by our team to the trial via events endorsed by the National Black Nursing Association and the Alzheimer’s Association.

Interviews of Black older adults who agreed to be referred to the clinical trial identified barriers/facilitators to enroll in the trial after allowing our team to forward their details to the trialists. Interview transcripts were analyzed in ATLAS-ti with inductive/deductive content analysis.

In April-May 2024, a Black researcher contacted the 43 older adults who agreed to be referred to the trial. She interviewed 17 study participants who self-reported as Black/African American (average age 69, 70% new to research).

wanting medications, understanding the importance of participating in clinical trials, interacting with race-concordant researchers, personal exposure to dementia.

limited connections with clinical trialists, logistical constraints, limited trust and understanding of participating in clinical trials.

Findings underscore the importance of strong connections between clinical trialists and Black communities, as well as the salience of interdisciplinary partnerships to achieve social justice.