Insights From African American Older Adults on Brain Health Research Engagement: "Need to See the Need".

African Americans (AAs) have an elevated risk of developing dementia, yet are underrepresented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer's disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults through an eight to nine session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: (a) Mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.

The Effectiveness of Community-based Outreach Events for the Promotion of African American Research Participation.

INTRODUCTION: African Americans (AA) are disproportionately affected by Alzheimer's disease and related dementias yet are under-represented in clinical research. Outreach events for AA are offered to encourage research participation; however, this approach's effectiveness remains largely unexplored. METHODS: To explore the effectiveness of AA-focused versus general audience events, the authors examined attendance data over 5 years, encompassing 10 general audience events and 4 events focused on AA. For each individual, the authors searched center records for recruitment contacts and research enrollment. Summary scores for attendance at AA-focused events, general audience events, and total events were compared between those with and without research involvement. RESULTS: Out of 773 unique AA that attended ≥1 event, 88 became or were involved in research (11.4% engagement). AA-focused events achieved greater AA attendance than general audience events. Although research-engaged individuals were more likely to have ever attended an AA-focused event than a general audience event, attendance at AA-focused events did not statistically relate to research engagement. In contrast, attendance at events focused on the general public was related to an increased likelihood of research participation. DISCUSSION: These findings have important implications for designing and implementing community events to encourage AA research participation.