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

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PROJECT ABSTRACT Rural ADRD family caregivers have higher caregiver burden and experience lower social support than their urban counterparts, which are impacted by Social Determinants of Health (SDOH) related to the physical and social isolation associated with providing care for a person living with ADRD. Currently, the technology available has 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 ADRD caregivers and community resources in a user-centered co-design process for the Alzheimer’s Family Connection, an innovative and novel online community and personalized resource connection specific to the needs of rural ADRD caregivers. We will integrate this new feature with CareVirtue, an existing multi-purpose care coordination platform designed specifically to support ADRD family caregivers. CareVirtue was developed through 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 geographically distributed 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 needs assessment of the resource needs of ADRD caregivers who live in rural communities (Stage 0). Second, we will co-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 will demonstrate the feasibility of our solution with rural ADRD caregivers (Stage IB). Our long-term goal is to create an evidence-based solution and commercialize a user-centered product that can meaningfully reduce or eliminate barriers encountered by rural ADRD caregivers, and potentially improve well-being and quality of life for ADRD families. This Phase 1 project will set the stage for a larger Phase 2 hybrid efficacy/effectiveness Stage 3 randomized clinical trial of Alzheimer’s Family Connection, powered to test changes in rural ADRD caregiver burden toward commercialization of this user-centered solution designed specifically for rural ADRD caregivers with hyper-local resources and connections to the local community.