The NGAGE Model Developed at the Rush Alzheimer’s Disease Research Center: An Approach to Community Engagement and Inclusion in Dementia Research with Diverse Community-Dwelling Older Adults
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Background
One of the biggest challenges in the field of Alzheimer’s disease and related dementias (ADRD) is the severe inequitable inclusion of Black and Latino adults in clinical research studies. Despite consistent and persistent efforts, rates of participation among diverse older adults remain critically low.
Objective
The purpose of this paper is to set forth The NGAGE Model, one developed at the Rush Alzheimer’s Disease Research Center (Rush ADRC) to facilitate community engagement and research participation among diverse older adults.
Methods
The NGAGE Model consists of five steps that are conceptually distinct but overlapping in practice: 1) Networking, 2) Give first, 3) Advocate for research, 4) Give back, and 5) Evaluate. We define and describe each step. For steps 1 through 4, we calculated the number of events, number of attendees for each event, and percentages of attendees by racial and ethnic categorizations annually from July 1, 2011, through June 30, 2023, resulting in data for 12 distinct years, as provided in annual progress reports to the National Institute on Aging. For Step 5, we counted the number of persons and computed percentages of people by racial and ethnic groups who consented to our Data and Specimen Repository and enrolled in a research study.
Results
Over 12 years, the Rush ADRC conducted 5,362 events with 265,794 attendees. Give First activities represented the NGAGE step with both the highest number of events (n=2,247) and the most attendees (n=124,403). Among Black adults, the highest attendee percentage existed for Advocate for Research events (47%), while the highest for Latinos occurred for Give First activities (26%). Furthermore, 2,135 persons consented to the Data and Specimen Repository and 5,905 enrolled in a research study across 12 years. Higher percentages of both Black (37%) and Latino (10%) adults enrolled in research studies compared to the Repository with 21% and 7%, respectively.
Conclusions
The NGAGE Model facilitated community engagement and research inclusion among Black and Latino adults, particularly via Give First and Advocate for Research activities. We discuss the impacts of study milestones, staff resources, and the COVID-19 pandemic on The NGAGE Model activities and outcomes.
