Meaningful reductions in racial and ethnic inequities in chronic diseases of aging remain unlikely without major advancements in the inclusion of minoritized populations in aging research. While sparse, studies investigating research participation disparities have predominantly focused on individual-level factors and behavioral change, overlooking the influence of study design, structural factors, and social determinants of health on participation. This is also reflected in conventional practices that consistently fail to address established participation barriers, such as study requirements that impose financial, transportation, linguistic, and/or logistical barriers that disproportionately burden participants belonging to minoritized populations. These shortcomings not only risk exacerbating distrust toward research and researchers, but also introduce significant selection biases, diminishing our ability to detect differential mechanisms of risk, resilience, and response to interventions across subpopulations. This forum article examines the intersecting factors that drive both health inequities in aging and disparate participation in aging research among minoritized populations. Using an intersectional, social justice, and emancipatory lens, we characterize the role of social determinants, historical contexts, and contemporaneous structures in shaping research accessibility and inclusion. We also introduce frameworks to accelerate transformative theoretical approaches to fostering equitable inclusion of minoritized populations in aging research.

Structural and social determinants of health (SSDoH) are environmental conditions in which individuals are born, live, learn, work, play, worship, and age that affect health, functioning, and quality-of-life outcomes across the life course. Growing evidence suggests that SSDoH can help to explain heterogeneity in outcomes in Alzheimer’s disease and Alzheimer’s disease and related dementias (AD/ADRD) research and clinical practice. The National Institute on Aging has prioritized collecting SSDoH data to elucidate disease mechanisms and aid discovery of disease-modifying treatments. However, a major nexus of AD/ADRD research, the national network of Alzheimer’s Disease Research Centers (ADRCs), collects few SSDoH data. We describe a framework for feasibly gathering and modeling SSDoH data across ADRCs. We lay out key constructs, their measures, and empirical evidence for their importance in elucidating disease and prevention mechanisms. Toward a goal of translation, the framework proposes a modular structure with a core set of measures and options for adjunctive modules. We describe considerations for measuring SSDoH in existing geographically and culturally diverse research cohorts. We also outline a rationale for universal implementation of a set of SSDoH measures and juxtapose the approach with alternatives aimed at collecting SSDoH data.

Investigate associations of early-life residence and school segregation with cognitive change in the Minority Aging Research Study. Four hundred ninety-eight blacks (age ~ 73.5; 75% = women) without dementia at baseline self-reported State of birth, residence at age 12, and school segregation status. Census Bureau definitions of South and Northeast/Midwest were used to categorize early-life residence. We evaluated global cognition and five cognitive domains at baseline and annually for ~7.5 years. Linear mixed effects models examined the associations of region of birth and residence at age 12 with baseline level and longitudinal change in cognition. Additional models examined school segregation experience. ~65% of Southern-born participants still lived in the South at age 12. Southern birth was associated with lower baseline global cognition and all cognitive domains (p-values ≤ .02) compared to Northern birth, but not cognitive change. A similar profile was seen for Southern residence at age 12. Segregation experience significantly modified associations of residence at age 12 on levels of cognition. Participants residing in the South attending a legally desegregated school demonstrated lower baseline levels of cognition (global, semantic, and working memory) than their Northeast/Midwest counterparts attending a legally desegregated or segregated school as well as their Southern counterparts attending a legally segregated school. This profile for participants attending a desegregated school in the South held for processing speed and visuospatial ability in comparisons to Northeast/Midwest counterparts, particularly those attending a legally desegregated school. Baseline cognition was poorer in individuals born and residing in the South, particularly those attending desegregated schools at age 12.

Cognition is a known determinant of healthcare and financial decision making in old age. Social vulnerabilities also might play a role in such decisions; however, the evidence for this is less clear. Here, we examined the association of loneliness with decision making and tested the hypothesis that loneliness is associated with decision making via its interaction with global cognition. Participants were 1,121 nondemented older adults from the Rush Memory and Aging Project. Healthcare and financial decision making was assessed via a performance-based measure; loneliness was assessed via the De Jong Gierveld Loneliness Scale; and cognition was assessed via a 19-test neuropsychological battery. In a regression model adjusted for age, sex, and education, global cognition was associated with decision making (B = 2.43, SE = 0.14, p < .001) but loneliness was not (B = −0.04, SE = 0.11, p = .72). However, in a model including the interaction of loneliness with global cognition, the interaction was significant (B = 0.44, SE = 0.20, p = .03), such that the detrimental effect of loneliness on decision making was stronger when cognition was low. In secondary analyses examining the interaction of loneliness with 5 specific cognitive domains, the interaction between loneliness and working memory with decision making was significant (B = 0.35, SE = 0.15, p = .02). Our results suggest that loneliness compromises healthcare and financial decision making among older adults with lower global cognition and, more specifically, lower working memory.

The field of Alzheimer's disease and related dementias (ADRD) urgently requires inclusive research to ensure the priorities and outcomes of research apply to those most impacted. We postulate public and participant involvement (PPI) as a pathway to achieving the best science, both in research that informs health and social policy as well as in therapeutic studies to treat and prevent ADRD. This position paper aims to provide dementia researchers with evidence to understand how to apply PPI. We begin by highlighting the disparities experienced by people with dementia, including ageism, stigma of cognitive impairment, and health disparities for minoritized communities. We then provide examples of PPI in ADRD across the research lifecycle, from defining research topics of priority to those impacted by ADRD, through the design, analysis, dissemination, and translation to policy and practice. We also provide recommendations to create and maintain collaboration between researchers and communities through PPI. Highlights: A central premise of public and participant involvement (PPI) is collaborative relationships between researchers and community members. To build equitable partnerships, researchers must acknowledge and understand the context of research. This includes ageism, the stigma of dementia, and ongoing discrimination for many minoritized communities. Meaningful partnerships include choice, respect, shared decision making, access, inclusion, and representation. Notably, we recommend that researchers begin partnerships early in the research process and share the impact of PPI on research.