Assessment of Research Community Characteristics in Engagement and Recruitment to Dementia Research
Abigail E Bergey, Nicole Taikeff Gabela, Jonathan D. Jackson, Elma DeSousa, Marissa L. Reynolds, Erin E Bennett- Psychiatry and Mental health
- Cellular and Molecular Neuroscience
- Geriatrics and Gerontology
- Neurology (clinical)
- Developmental Neuroscience
- Health Policy
- Epidemiology
Abstract
Background
Research studies and clinical trials in Alzheimer’s disease and related dementias (ADRD) attract only socio‐demographically advantaged populations, despite a higher risk of ADRD in historically marginalized and minoritized populations (HMM). Advancements in participant recruitment, retention, and engagement (RER), and clinical research design are urgently needed to address ADRD disparities and inequities. In light of these critical shortfalls in diverse and representative RER, this mixed‐methods study assesses RER strategies as well as the context in which these strategies are practiced within the ADRD Centers Program.
Methods
Semi‐structured interviews and focus groups were conducted across four ADRD research centers and their respective surrounding communities. Interviews were conducted with research and non‐research faculty, research staff, faith and civic leaders, patients, care providers, and community members. Geospatial mapping tools were used to better define where current RER practices were being focused relative to where HMM and high‐risk populations resided.
Results
Extracted themes demonstrated that current diversity, equity, and inclusion efforts (DEI) from sites inefficiently connected HMM communities with ADRD research institutions. Instability in collaborative culture and a lack of grounded, fully embraced DEI efforts were cited in driving the divide between HMM and research communities. Inequitable burden of funding and sustaining DEI efforts, as well as the diffused impact in HMM communities further limited RER activities targeting HMM and high‐risk populations. Geospatial analysis additionally revealed that RER activities tended to occur proximal to advantaged populations, rather than in spaces accessible to HMM and high‐risk communities.
Conclusion
The current study sought to assess RER strategies as well as the context in which these strategies are practiced to better understand motivations and barriers within NIA’s ADRD Centers Program. This sharper degree of information and clarity regarding RER activities may yield precision RER strategies and resources.