Rural Community-Engaged Development of Technology-Enabled Dementia Care Navigation Intervention

Background and Purpose: 75% of Georgia counties are rural and all are designated as medically underserved. With nearly 190,000 people living with dementia (PLWD) in the state, there are only 139 geriatricians, primarily clustered in city centers. In the face of dementia workforce shortages, there is an opportunity to supplement care through virtual dementia navigators. These nonmedical, trained lay workers become trusted partners to PLWD and their caregivers, building bridges across system barriers. They offer telehealth and hybrid delivery of support through four primary tasks, assisting with (1) access to diagnosis, (2) dementia education, (3) care coordination, and (4) psychosocial/resource support. The collaborative care model of dementia care navigation is proliferating with the initiation of an eight-year pilot program through the Centers for Medicare and Medicaid Services; however, there is limited investigation into tailoring rural implementation. Supported by the rural community credibility of the Cognitive Aging Research and Education (CARE) Center at the University of Georgia, this NIH Stage 0 study provides pre-intervention insight into building technology-enabled dementia care navigation programs that suit rural areas across the state.

Methods: Five focus groups were held (N=31) with informal caregivers (n=5), residential care (n=3) and hospital (n=6) healthcare workers, state-level dementia experts (n=10), and community leaders (n=7). Participants were predominantly rural-living (71%), White (77.4%), female (90.3%) individuals with deep community insight. Traditional implementation science was paired with the innovative design thinking approach to create a workshop-style environment for co-design. Participants created caregiving case scenarios representative of local communities, rank-ordered which social determinants of health most impacted rural dementia care navigation, and brainstormed recommendations for rural services. Participants also completed a post-survey of validated implementation measures (scale 1-5). Mixed methods analysis followed.

Results: The top social determinant of health barriers were identified, each corresponding to one of four common dementia care navigation tasks. High healthcare costs (22.3%) were the top barrier to accessing dementia diagnosis, low health literacy (20.8%) inhibited dementia education, transportation issues (20.5%) exacerbated struggles with care coordination, and social isolation (16.3%) negatively affected access to psychosocial/resource support. As one community leader explained, “You’re blessed to live in the country until you start getting to the point where you need services.” Qualitative content analysis resulted in expanded definitions of social determinants for the rural context, as well as person-, place-, and technology-based recommendations for implementation. Implementation measures were promising for dementia care navigation acceptability (M=4.67), appropriateness (M= 4.76), and feasibility (M=4.49).

Conclusions and Implications: Effort invested into the basic science of NIH Stage 0 inquiry strengthens the co-designed foundation of community-engaged intervention research. Identifying top social barriers informs future dementia care navigation program services, defining rural social determinants ensures that barriers are assessed with appropriate language and contextual understanding, and gathering stakeholder recommendations improves local acceptability, producing research that satisfies the needs of the community. This formative work will guide intervention development for rural medically underserved areas.