Development of culturally appropriate clinical research education materials in Alzheimer’s disease and related dementias (ADRD) for Hispanic/Latino caregivers and at‐risk individuals

• Published in: Alzheimer's & dementia Vol. 17; no. S10
• Main Authors: Shakur, Mujaahida, Massett, Holly A, McGowan, Melissa, Gallop‐Goodman, Gerda, Mitchell, Alexandra K, Simoneau, Elizabeth, Rehberg, Kathryn, Burke, Panne, Bui, Elise
• Format: Journal Article
• Language: English
• Published: 01.12.2021
• DOI: 10.1002/alz.054500
• ISSN: 1552-5260

Background Though Hispanics/Latinos (H/L) comprise 18% of the U.S. population and are 1.5 times at greater risk for Alzheimer’s and related dementias (AD/ADRD) than non‐Hispanic Whites, a median of only 2% of participants in NIH‐funded AD/ADRD clinical trials are H/L. Reasons abound for this inequity; key documented impediments to enrollment of Latinos are too few researchers offering studies and limited materials that provide culturally and linguistically relevant information. This presents findings from focus groups conducted by the National Institute on Aging (NIA) to identify salient, culturally appropriate message concepts that raise awareness, address barriers, and motivate H/L to consider participation in AD/ADRD studies. Method Twelve remote focus groups (N=72) were conducted among two H/L audiences: 1) those at risk for AD/ADRD; and 2) those caring for a family member or friend with AD/ADRD. Messages were designed to motivate H/L to learn more about AD/ADRD clinical studies. Sessions explored participants’ knowledge, attitudes, and beliefs regarding AD/ADRD and clinical studies. Participants reviewed and provided feedback on messaging designed to motivate them to seek more information about AD/ADRD clinical studies. Result Message concepts that resonated strongly were those that 1) framed clinical studies as one step to finding a cure for AD/ADRD and 2) connected participation with helping their family members’ future health. Concepts were more acceptable if they represented multi‐generational families, emphasized the importance of family support, and promoted diversity and inclusivity (showing a diversity of age, gender, skin tone). Participants requested that concepts offered more opportunities to learn about Alzheimer’s and local clinical studies. Trusted concepts are those that clearly identified the document’s source and avoided the terms “trial” and “dementia,” as both had negative connotations in the Spanish language. Conclusion The data from these focus groups improve our understanding of message concepts that motivate H/L to consider participating in AD/ADRD clinical research. They also provide insights to develop, finalize and make available to the research community a suite of culturally appropriate, well‐tested materials for H/L populations in both English and Spanish that can be used to increase awareness of AD/ADRD and clinical research.