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Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD) disproportionally affect Hispanic and Latino populations, yet Hispanics/Latinos are substantially underrepresented in AD/ADRD clinical research. Diverse inclusion in trials is an ethical and scientific imperative, as underrepresentation reduces the ability to generalize study findings and treatments across populations most affected by a disease. This paper presents findings from a narrative literature review (N = 210) of the current landscape of Hispanic/Latino participation in clinical research, including the challenges, facilitators, and communication channels to conduct culturally appropriate outreach efforts to increase awareness and participation of Hispanics/Latinos in AD/ADRD clinical research studies. Many challenges identified were systemic in nature: lack of culturally relevant resources; staffing that does not represent participants' cultures/language; eligibility criteria that disproportionately excludes Hispanics/Latinos; and too few studies available in Hispanic/Latino communities. The paper also details facilitators and messaging strategies to improve engagement and interest among Hispanics/Latinos in AD/ADRD research, starting with approaches that recognize and address the heterogeneity of the Hispanic/Latino ethnicity, and then, tailor outreach activities and programs to address their diverse needs and circumstances. The needs identified in this article represent longstanding failures to improve engagement and interest among Hispanics/Latinos in AD/ADRD research; we discuss how the field can move forward learning from the experiences of the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Background: Asian Americans and Pacific Islanders (AAPI) are one of the fastest‐growing populations in the United States, yet these communities comprise less than one percent of participants in NIH's Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) clinical research. This underrepresentation is due to numerous barriers well‐documented in the literature, with a key deterrent being a lack of culturally and linguistically appropriate outreach materials. This abstract presents findings from focus groups conducted by the National Institute on Aging (NIA) to identify culturally and linguistically appropriate message concepts that raise awareness, address barriers and motivate Asian American and Pacific Islanders to consider participation in AD/ADRD research studies. Method: Eighteen virtual focus groups (N = 103 individuals) were conducted with Chinese Americans, Filipino Americans, and Indian Americans who are at‐risk for AD/ADRD or are caregivers to people living with dementia. Focus groups were conducted in Chinese, Hindi, Tagalog and English. The sessions tested multiple audience‐tailored message concepts designed to increase interest and encourage participation in AD/ADRD clinical research. These discussions also examined participants' preferred language, terminology and communication approaches. Result: Overall, message concepts that 1) emphasized the value of caring for family members; 2) offered a sense of hope; 3) communicated a clear call to action; and 4) provided opportunities to learn more information about clinical research resonated across all groups. Between participant audiences, there were some important differences, including around terminology preferences. For example, Chinese‐American participants expressed concern about the term "caregiver" as it implied that taking care of a loved one was a burden or a professional job, rather than a familial responsibility. Concept visuals will be presented. Conclusion: This research conducted by NIA improves our understanding of messaging concepts that do and do not resonate with AAPI, providing valuable insight into themes that should be leveraged to effectively promote awareness about AD/ADRD clinical research with these communities. The finding from this study were used to develop, finalize and make available to the research community a suite of culturally and linguistically appropriate materials to increase awareness and interest in AD/ADRD clinical research among AAPI communities. [ABSTRACT FROM AUTHOR]

Background: Limited participation of Black/African American (B/AA), Hispanic/Latino (H/L), and Asian American & Pacific Islander (AAPI) communities in AD/ADRD clinical trials (CT) is partly due to few researchers offering trial opportunities and inadequate CT information that is culturally relevant. We present the results of three National Institute on Aging (NIA) national surveys conducted with B/AA, H/L, and AAPI samples to assess the impact of culturally tailored outreach materials for each group, respectively, on individuals' likelihood to consider participating in CTs. Method: Online panel surveys were conducted with B/AA (N = 616; 2019), H/L (N = 545; 2020), and AAPI (N = 756; 2021) individuals who: 1) had a family history AD/ADRD, 2) were caring for an individual with AD/ADRD, or 3) reported no family history of AD/ADRD. The surveys assessed if viewing creative concepts (four print/photo ads developed specifically with and for each population using focus groups) positively impacted participants' likelihood to consider participating in an AD/ADRD CTs. Result: After reviewing their respective ads, B/AA and H/L at‐risk, caregiver, and healthy audiences, and AAPI at‐risk individuals, all significantly increased their reported pre‐posttest "likelihood to consider a CT". AAPI caregivers started with and maintained a high level of interest but did not change their likelihood to consider a CT. Across all groups, there was a median 12.5% increase of individuals reporting "very" or "extremely interested" in AD/ADRD CTs. Persons with family history had greater increases among B/AA and AAPI, while caregivers did among H/L. Motivating CT messages for all groups were: help/hope for their future generations (family/community) the potential to prevent/treat the disease. B/AA respondents also were motivated to find treatments that could work for all races. Conclusion: The findings highlight that culturally appropriate outreach materials, developed with and for specific groups, can generate significant interest in participation of AD/ADRD clinical trials after viewing only four ads. Though common themes emerged, focus groups and surveys indicated specific yet critical nuances differentiating message preferences across B/AA, H/L, and AAPI groups. This is the only known research to systematically explore AD/ADRD CT communication needs within and across traditionally underserved populations. [ABSTRACT FROM AUTHOR]

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 abstract 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. [ABSTRACT FROM AUTHOR]