Participatory Research Approaches in Alzheimer’s Disease and Related Dementias Literature: A Scoping Review

Abstract

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 Alzheimer’s 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.