BACKGROUND AND OBJECTIVES: Given the increase in methodological pluralism in research on brain health, cognitive aging, and neurodegenerative diseases, this scoping review aims to provide a descriptive overview and qualitative content analysis of studies stating the use of participatory research approaches within Alzheimers disease and related dementias (ADRD) literature globally. RESEARCH DESIGN AND METHODS: We conducted a systematic search across four multidisciplinary databases (CINAHL, SCOPUS, PsycInfo, PubMed) for peer-reviewed, English-language studies addressing ADRD that explicitly described their use of a participatory research approach. We employed a systematic process for selecting articles that yielded a final sample of 163 studies. Data from articles were analyzed to chart trends from 1990 to 2022 in terminology, descriptions, application of participatory approaches, and the extent and nature of partnerships with nonacademics. RESULTS: Results demonstrated geographic differences in the use of stated approaches between North America-where community-based participatory research predominates-and Europe, where Action Research is most common. We further found that only 73% of papers in this systematic review had identifiable definitions or descriptions of the participatory approach used. Findings also showed that 14% of articles demonstrated no evidence of engaged partnership beyond activities typical of research participants, while 23% of articles identified partnering with people with dementia, and an additional 16% reported partnerships with members from Indigenous, Black, Asian, or Latinx communities. DISCUSSION AND IMPLICATIONS: This scoping review identifies three areas in need of greater attention in ADRD literature using participatory research approaches. First, findings indicate the importance of strengthening the use, transparency, and rigor of participatory methods. Second, results suggest the need for greater inclusion of historically marginalized groups who are most affected by ADRD as research partners. Finally, the findings highlight the need for integrating social justice values of participatory approaches into research project designs.

Background and objectives

Race, childhood socioeconomic status (cSES), and region of childhood residence are each associated with later-life cognition, but no studies have examined how the confluence of these factors influences later-life cognitive performance. Guided by intersectionality theory, we examined individuals' social positionality across these dimensions as a predictor of cognitive performance in later life among non-Hispanic White (NHW) and non-Hispanic Black (NHB) older adults.

Research design and methods

We used data from the 2010-2016 waves of the Health and Retirement Study with participants aged 65 and older in 2010. We employed growth curve modeling to estimate associations among race, cSES, and region of childhood residence, as well as their interactions, and cognitive performance at baseline and over time.

Results

Identifying as NHB, residing in the South, and having lower cSES each were associated with poorer later-life cognition at baseline. Childhood residence in the South was an especially strong risk factor for poorer cognition among NHBs. Among NHWs, higher cSES was associated with better baseline cognitive performance, especially among those from the South. NHBs from the South demonstrated a small advantage of higher cSES, but regardless of cSES, NHBs from the South had lower levels of baseline cognitive scores compared to all other subgroups. We observed steeper declines in cognitive performance over the 6-year study period among participants who lived in the South as children.

Discussion and implications

Our findings suggest that intersectional social positions across race, cSES, and region of childhood residence primarily influence baseline cognition in later life. Results implicate the importance of attention to multiple life-course social positions in the context of racism within social policies and other initiatives to promote equity in later-life brain health.