Alzheimer's Family Connection: A Novel Online Community and Personalized Resource Connection for Rural ADRD Caregivers

PROJECT ABSTRACT Rural ADRD family caregivers have higher caregiver burden and experience lower social support than theirurban counterparts, which are impacted by Social Determinants of Health (SDOH) related to the physical andsocial isolation associated with providing care for a person living with ADRD. Currently, the technology availablehas lacked focus on rural ADRD caregivers and has limited focus on community influence on health outcomes.To address this critical need, and in response to RFA-MD-22-004, we propose to engage with rural ADRDcaregivers and community resources in a user-centered co-design process for the Alzheimer’s FamilyConnection, an innovative and novel online community and personalized resource connection specific to theneeds of rural ADRD caregivers. We will integrate this new feature with CareVirtue, an existing multi-purposecare coordination platform designed specifically to support ADRD family caregivers. CareVirtue was developedthrough an iterative user-centered design process, and our Phase I data demonstrate CareVirtue’s usability,usefulness, and feasibility for daily use by ADRD caregivers and their care networks in a variety of geographicallydistributed settings. Following the NIH Stage Model, we will conduct Stage 0 and Stage 1A/1B activities to design,develop, and evaluate the Alzheimer’s Family Connection. First, we will conduct a user-centered needsassessment of the resource needs of ADRD caregivers who live in rural communities (Stage 0). Second, we willco-design Alzheimer’s Family Connection, a geolocated ADRD resource prototype that utilizes public and user-generated resources and facilities communication with rural ADRD caregivers (Stage IA). Third, we willdemonstrate the feasibility of our solution with rural ADRD caregivers (Stage IB). Our long-term goal is to createan evidence-based solution and commercialize a user-centered product that can meaningfully reduce oreliminate barriers encountered by rural ADRD caregivers, and potentially improve well-being and quality of lifefor ADRD families. This Phase 1 project will set the stage for a larger Phase 2 hybrid efficacy/effectiveness Stage3 randomized clinical trial of Alzheimer’s Family Connection, powered to test changes in rural ADRD caregiverburden toward commercialization of this user-centered solution designed specifically for rural ADRD caregiverswith hyper-local resources and connections to the local community.