Include Us: A Pilot Study to Enhance Alzheimer’s Disease Research Literacy Among Black/African American Older Adults
Objective:
To pilot a culturally tailored Alzheimer’s disease (AD) research literacy session--INCLUDE US--and assess its feasibility, acceptability, and preliminary impact on AD knowledge and engagement among Black/African American (AA) older adults.
Background:
Black/AA adults face nearly twice the risk of dementia compared with non-Hispanic Whites but remain underrepresented in AD research. Historical mistrust, limited awareness of clinical studies, and lack of culturally relevant education contribute to this disparity. Community-engaged training programs may help bridge these gaps by increasing literacy, trust, and informed decision-making around AD research.
Design/Methods:
INCLUDE US was adapted from Washington University’s Community Research Fellows Training (CRFT) program—a 17-session curriculum in community-based participatory research. Each session was reviewed for relevance to older Black/AA adults, shortened from three hours to 90 minutes, and modified to include AD-specific content such as preclinical AD, clinical trials, and research ethics. The adaptation drew on Public Health Research Methods for Partnerships and Practice to align objectives with literacy goals. A pilot AD session was conducted in person and virtually with four Black/AA older adults. Pre- and post-tests (12 items) measured knowledge change, and a 5-item Likert survey with open-ended questions assessed satisfaction and feasibility.
Results:
All participants completed the session and assessments, demonstrating strong feasibility and engagement. Mean AD knowledge scores improved modestly from 59.6% to 73.1%, with participants reporting greater confidence in understanding research processes. Qualitative feedback highlighted appreciation for culturally tailored examples, simplified trial explanations, and community-led facilitation. Participants recommended expanding sessions into a series and adding interactive components.
Conclusions:
Preliminary findings suggest that the INCLUDE US pilot is feasible and acceptable for increasing AD research literacy among Black/AA older adults. While limited by small sample size, these results support continued refinement and expansion of the curriculum. Future phases will establish a Community Council to co-develop modules, strengthening long-term community trust and participation in AD research.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.