Affiliations: [a] Vanderbilt Memory & Alzheimer's Center, Department of Neurology, Vanderbilt University Medical Center, Nashville, TN, USA | [b] Department of Psychology, University of Massachusetts at Boston, Boston, MA, USA | [c] Department of Biostatistics, Vanderbilt University, Nashville, TN, USA | [d] Department of Neurology, Boston Children's Hospital, Boston, MA, USA | [e] Boston University Alzheimer's Disease Center, Department of Neurology, Boston University School of Medicine, Boston, MA, USA
Correspondence:
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Correspondence to: Angela L. Jefferson, PhD, Vanderbilt Memory & Alzheimer's Center, Department of Neurology, Vanderbilt University Medical Center, 2525 West End Avenue, 12th Floor – Suite 1200, Nashville, TN 37203, USA. Tel.: +1 615 322 8676; Fax: +1 615 875 2727; E-mail: [email protected].
Abstract: Background:Alzheimer’s disease (AD) rates are higher among African Americans than in other racial or ethnic groups. However, Black elders participate in research at lower rates than Whites. Objective:The present study aimed to: (1) implement an informational protocol for African Americans elders and their loved ones about the benefits of clinical research and brain donation program participation in AD, and (2) quantitatively assess changes in knowledge, attitudes, and trust. Methods:Participants included 52 African American participants from the Boston University Alzheimer’s Disease Center research registry (74 ± 8 years, 83% female) and 11 loved ones. Registry participants completed a pre- and post-group survey assessing brain donation knowledge, factors influencing brain donation, attitudes about medical research, and trust in medical researchers. Results:There were no significant changes in mean scores between the pre- and post-group surveys. However, post-group outcomes revealed that 69% of participants shared details from the protocol with loved ones, 27% expressed an interest in joining Center-sponsored studies, and 10% indicated an interest in changing their brain donation status. Conclusion:The informational protocol implemented in this study is an effective method to encourage family discussions about brain donation and increase interest in other AD research studies. Longitudinal follow-up is necessary to assess the long-term implications of these groups on participation in a brain donation program.
Keywords: Black populations, brain autopsy, cognitive impairment, research enthusiasm
