Building a Regional Community-Based Participatory Research Model for Alzheimer’s Disease and Related Dementias for Rural Communities

Community-based participatory research (CBPR) offers effective, flexible approaches well suited to conduct health research with underrepresented populations that can be tailored to unique social, cultural, and geographic contexts. For these reasons, CBPR offers the potential to address rural underrepresentation in dementia research. However, the diversity of rural America requires multi-scalar approaches to research that account for regional characteristics in the analysis of health data and the design of health system interventions. To address this issue, Memory Keepers Medical Discovery Team (MK-MDT) has developed a regional CBPR model for dementia research that incorporates multiple rural communities across northern Minnesota, which builds unique regional knowledge allowing for regional comparisons. Facilitated by numerous partnerships with community organizations, healthcare providers, and academics, the MK-MDT regional CBPR model offers a framework that is actionable and effective, especially for recruiting participants across rural regions for a range of projects. In this paper, we describe the components and approach to our regional CBPR model as well as three case studies of how this approach has been effectively applied across a variety of projects focused on dementia. Although applied to the upper Midwest, the MK-MDT regional CBPR model is applicable to other rural regions where networks of rural communities work together to address Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) and care needs. This approach demonstrates the power in leveraging multiple communities in CBPR research that better reflects the inter-related ways in which rural people and places interact with each other to provide AD/ADRD care.