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.
Abstract
Nicole Ruggiano
Dr. Nicole Ruggiano is a professor and associate dean of research within the School of Social Work. She is a geriatric social worker by training with expertise in health care for older adults and health policy. Her research focuses on developing and testing information technologies that support older adults with dementia and their families. As part of her work, she oversees the Alabama Caregiver Connect program, which educates and supports families facing challenges related to dementia.
Dr. Ruggiano also has expertise in health policy and previously was selected as an American Political Science Association Health and Aging Congressional Fellow, where she spent a year working part time in Washington, D.C., on policy projects to increase the quality of healthcare for older adults. Dr. Ruggiano was also appointed by Gov. Kay Ivy to serve on the Alabama Lifespan Respite Coalition.
Dr. Ruggiano regularly gives public health talks in the community to inform patients, caregivers, and providers about caregiving and person-centered healthcare. Her work has been featured in print and television news, she has served as a media source on health and aging topics, and she has also been selected as a TEDx speaker for her work on health self-management and autonomy in later life.
Performance Period: 10/01/2020 - 09/30/2022
Institution: University of Alabama Tuscaloosa
Award Number: 1951974
Core Areas:
Health and Wellbeing
Project Material
Presentations