Recruitment and Retention of Underrepresented Populations in Alzheimer’s Disease Research: A Systematic Review

Introduction: Alzheimer’s disease and related dementias (ADRD) disproportionately impact racial and ethnic minority and socioeconomically disadvantaged adults. Yet, these populations are significantly underrepresented in research. Methods: We systematically reviewed the literature for published reports describing recruitment and retention of individuals from underrepresented backgrounds in ADRD research or underrepresented participants’ perspectives regarding ADRD research participation. Relevant evidence was synthesized and evaluated for quality. Results: We identified 22 eligible studies. Seven studies focused on recruitment/retention approaches, all of which included multifaceted efforts and at least one community outreach component. There was considerable heterogeneity in approaches used, specific activities and strategies, outcome measurement, and conclusions regarding effectiveness. Despite limited use of prospective evaluation strategies, most authors reported improvements in diverse representation in ADRD cohorts. Studies evaluating participant views focused largely on predetermined explanations of participation including attitudes, barriers/facilitators, education, trust, and religiosity. Across all studies, the strength of evidence was low. Discussion: Overall, the quantity and quality of available evidence to inform best practices in recruitment, retention, and inclusion of underrepresented populations in ADRD research are low. Further efforts to systematically evaluate the success of existing and emergent approaches will require improved methodological standards and uniform measures for evaluating recruitment, participation, and inclusivity

Learning from Transmasculine Experiences with Health Care: Tangible Inlets for Reducing Health Disparities through Patient-Provider Relationships

Purpose: We examined health care experiences of transmasculine young adults to clarify factors contributing to mistrust in the health care system and identify tangible and modifiable means to address health disparities through improved patient-provider interactions. Thematic analysis highlights patterns within historical relationships between medical models and transmasculine embodiment, and provides guidance for health care clinicians, researchers, and policy makers to deliver competent services for transgender and gender diverse (TGD) individuals. Methods: The study team used qualitative methodology guided by interpretive phenomenological analysis. Semistructured interviews with 12 participants who self-identified as transmasculine were conducted, transcribed, and coded thematically. Results: Participants were a community sample of 12 young adults 18-35 years of age (M=23, standard deviation=3.74), who self-identified as transmasculine. Three participants identified as a racial/ethnic minority. Participants were highly educated, with most completing at least some college. The superordinate thematic domain Perspectives on Health Care emerged, under which three subthemes were nested: (1) an essentialist, binary medical model is inaccurate and oppressive, (2) consequences of medicalizing gender (i.e., gender as a diagnosis), and (3) recommendations to improve health care. Conclusions: Qualitative analysis revealed specific ways in which the relationship between transmasculine individuals and current health care systems are fraught with difficulties, including the impact of stigma, gatekeeping, and inaccuracies, in current diagnostic criteria. Participants shared lived experiences and offered innovative ideas to improve health care delivery, such as challenging socialized biases, increased education, and immersion in TGD communities to advocate for change in research, practice, and policy

Lifetime stressful experiences and cognitive performance in African American and white older adults: New evidence from a population‐based cohort

BackgroundGrowing evidence suggests that modifiable sociocontextual factors powerfully shape health including risk for Alzheimer’s disease and related dementias (ADRD), and contribute substantially to well‐established racial disparities in cognitive aging. Stressful experiences cluster and accumulate across the lifespan, plausibly impacting brain health, but cognitive effects of lifetime adversity across diverse populations remain underexplored. We examined relationships between lifetime stressful events and cognition among African American and White older adults in the Health and Retirement Study (HRS).MethodThe study sample included non‐demented adults (N=8,222) aged 60 and older who provided cognitive and lifetime stress data at the 2006/08 and 2010/12 HRS waves. Cognitive outcomes included performance on a test of global cognition (Telephone Interview for Cognitive Status) and its immediate and delayed recall subscales. The key predictor of interest was a Lifetime Stress index score (sample range=0‐11 experiences). Mixed‐effects regression models assessed associations of lifetime stress with each cognitive outcome. Polynomial and three‐way interaction models explored potential (1) non‐linear associations between stress and cognition, and (2) moderation of those relationships by race.ResultAfrican Americans (N=1,015) were younger (M=71.7, SD=6.8) than whites (M=72.2, SD=6.3) and reported fewer years of education (p<0.001). Reported number of stressful life events reported (M=1.61, SD=1.45) did not vary by race. In adjusted models (Table 1, Model 2), a significant stress quadratic revealed that relationships with global cognition (p<0.001) and delayed recall (p=0.01) were non‐linear. Modification by African American race (Table 1, Model 3; Figure 1) was observed for global cognition (p=0.01) but not recall subscales (immediate: p=0.10; delayed: p=0.45).ConclusionWe found that lifetime stress is associated with poorer later‐life cognitive function; however, detriment is observed only at high levels of stress. African American and White HRS participants report very few stressful life events on average, but African Americans reporting many stressors showed exacerbated stressor‐associated dysfunction in global cognition. Our findings from this large, population‐based sample reaffirm the role for stress and stress‐adjacent experiences in cognitive aging, particularly among communities facing disproportionate ADRD burden. Expanding community‐specific, lifecourse‐based research and intervention strategies is a necessary next step toward understanding and mitigating disparity through targeted resource placement and stakeholder partnerships.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/163909/1/alz046422.pd