SCC-PG: Planning Live, Sustainable Community Asset Mapping for a Dementia e-Friendly Alabama

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Among the 5.7 million Americans with Alzheimer’s disease or related dementia (ADRD), most reside in the community and receive care from unpaid family caregivers. ADRD caregiving is complex and caregivers often report having a lack of support and barriers to services, which often results in feelings of depression, burden, and isolation. At the same time, primary care providers report being unaware of local supportive services that they can refer patients and caregivers to for support. There is particular urgency to address issues of ADRD care in Alabama, where there is an expected 17% increase in cases of ADRD over the next six years and patient/caregiver populations that are geographically isolated, vulnerable, and unaware of local support services and resources. To better support ADRD caregivers and link them to needed services, this planning project will engage community stakeholders in four regions of Alabama to initiate the development of a community asset mapping (CAM) technology that: (a) utilizes volunteered geographic information (VGI) and data mining; (b) is self-monitoring for data accuracy and quality; and (c) can be used by community residents and providers to connect families with supportive resources that address their ADRD needs. To inform the development of this technology, the planning project will collect data from a variety of stakeholders (people with ADRD, caregivers, providers, policymakers) through interviews, focus groups, and surveys. The data collected will address a number of conceptual issues in developing the proposed technology and promoting its adoption and engagement by stakeholders. The project will also explore and evaluate approaches to managing data that takes into account both space and time, available data sources for data mining, and data mining algorithms for the proposed technology. Overall, the planning project will explore how new crowd sourcing protocols may drive community engagement with a VGI technology that aims to address issues of ADRD care and caregiving. More importantly, the project can potentially transform social science research on ADRD care and caregiving from existing technology approaches that are used in isolation (e.g., internet searches) or by small groups (e.g., virtual support groups) towards a connected community approach that facilitates social and mutual support and is driven by local needs to improve care and quality of life.This project is jointly funded by Smart and Connected Communities and the Established Program to Stimulate Competitive Research (EPSCoR).This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.