Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research

Abstract

Introduction Alzheimer's disease (AD) is a public health priority. AD biomarkers may vary based on race, but the recruitment of diverse participants has been challenging. Methods Three groups of Black and White participants with and without prior research advocacy or participation were interviewed individually or in focus groups to better understand perspectives related to AD biomarker research participation. A rapid qualitative data analytic approach was used to analyze the data. Results Identified barriers to AD biomarker research participation included hesitancy due to fear, distrust of research and researchers, lack of relevant knowledge, and lack of research test results disclosure. Drivers for engagement in biomarker research procedures included knowledge about research, AD, and related clinical procedures, perceived benefits of participation, and outreach from trusted sources. Discussion Participants’ comments related to the need for diversity in research and desire for results disclosure suggest opportunities to engage Black individuals. Highlights Black Americans experience more salient barriers to Alzheimer's disease (AD) biomarker research participation. Concerns about research diversity influence research participation decisions. Research test disclosure may affect research participation and retention.

A fresh look at the multi‐level social determinants of disparities in Alzheimer's disease and related dementias

“…In true reflection of the deeply multifaceted nature of this line of inquiry, the topics covered in this special issue span a diverse array of content areas such as SDoH-linked cognitive decline across racial groups, the lack of representativeness in ADRD research, the effects of early life experiences on late-life cognition, the impact of COVID-19 on cognitive impairment in older adults, the economic burden associated with mild cognitive impairment and mild dementia, proposals emanating from workshops and perspectives on improving access to timely diagnosis, differences in performance across racial groups on commonly used instruments for tracking cognitive change, and novel methodologies that can be used to better understand how the environment affects brain health. [9][10][11][12][13][14][15][16][17][18][19][20][21][22][23][24] Taken together, the studies in this special issue bring us closer to identifying key constructs related to economic stability, social and community context, access to and quality of health care, and other things that are linked to cognitive outcomes and the progression to ADRD in minoritized older adults. Email: ozioma@medicine.wisc.edu…”

Post‐disclosure distress among racial and ethnic groups in a preclinical AD trial

“…Though data are limited, available studies do not find differential interest or willingness to pursue biomarker testing among racial and ethnic groups 8–12 . Views, understanding, and stigma associated with AD, however, may differ among racial, ethnic, and cultural groups 13 .…”

Accelerating diversity in Alzheimer's disease research by partnering with a community advisory board

“…For example, CAB and OREC leadership would meet regularly during grant planning and proposal development activities for the IADRC P30 and its affiliated studies to discuss the study's proposed aims and strategy.Based on these discussions, the CAB was able to recommend how to tailor the recruitment strategies to meet the specific URG enrollment needs of affiliated studies. For AD-REACH, the Principal investigator (PI) team included CAB members in the qualitative interviews and survey development to ensure the final version of the survey accurately designed questions to capture challenges and barriers of research participation of African American and Black older adults 10. For the LEADS diversity supplement, the PI team, OREC team, and the CAB collaborator strategically decided that the outreach and recruitment efforts about early onset AD should be incorporated into our broader URG outreach and recruitment efforts and incorporated a message raising awareness about a stigmatizing, rare disorder into a more acceptable message about health promotion and early detection of AD beginning in mid-life.…”