Attitudes and Perceptions of Research in Aging and Dementia in an Urban Minority Population

Abstract

In dementia trials, minority participation is low. We assessed attitudes toward research in a community based urban poor minority sample of elderly adults attending senior center talks using the 7-item Research Attitudes Questionnaire (RAQ). Presentations on cognitive aging were given at senior centers, and 123 attendees completed the RAQ-7. On trust and safety questions, a significant minority (42-48%) responded neutrally or negatively. Encouragingly, on questions concerning the importance of research, 72-81% answered positively. More work can be done to capitalize on these findings to engage and foster trust, and this can be a focus of outreach.

Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review

“…One study specified targeting a racially diverse population, achieving a 29% non-white sample [34]. Four of 22 studies reported participant income [36,42,44,46], and two studies focused specifically on engaging people from “poor” backgrounds [51] or within “disadvantaged or underserved” areas [20]. No studies focused on or included Native American/Alaskan Native or Pacific Islander populations.…”

“…Four of 22 studies reported participant income [36,42,44,46], and two studies focused specifically on engaging people from “poor” backgrounds [51] or within “disadvantaged or underserved” areas [20].…”

“…Across the 16 studies that used a measurement tool, seven [35,[47], [48], [49], [50], [51]] used previously tested and validated tools, which included the Alzheimer's Disease Knowledge Scale [52], the Healthcare System Distrust Scale [49], and the AD Center Patient Lumbar Puncture Experience Survey [47]. Four of these seven studies using validated tools also used nonvalidated investigator-designed measurement tools or items [[48], [49], [50],52], and the remaining nine studies used only nonvalidated investigator-designed measurement tools or reported outcomes of a recruitment study [20,[32], [33], [34],36,37,[44], [45], [46]] (Supplementary Appendix D).…”

“…Our review identified 16 studies that examined underrepresented participant perspectives regarding ADRD research. Of these studies, 7 focused on participant views around incentives and barriers to joining an ADRD study or registry [32,[40], [41], [42],48,51,52], and the remaining 9 studies focused on specific related research procedures including brain donation [38,39,[43], [44], [45],49,50], genetic testing [46], and lumbar puncture [47]. Methodological approach was heterogeneous across these studies, with 7 studies using surveys or questionnaires, 6 using focus groups or interviews, and 3 using a combination of surveys and interviews.…”

African Americans are less likely to enroll in preclinical Alzheimer's disease clinical trials

“…Neugroschl et al. [33] administered the RAQ to 123 diverse attendees of community talks on cognitive aging in New York City and found that nearly half of participants had a less than positive response for the item “participating in medical research is generally safe.” The authors noted that these scores were lower than previously reported means from predominantly white participants [34] .…”