Exploring COVID-19’s Impact on the Care and Well-being of Community Dwelling Persons with Dementia

AbstractThe disease, COVID-19, caused by the novel severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)was first identified in Wuhan, China. As the COVID-19 pandemic continues to spread throughout the UnitedStates, it puts exceptional burden on at-risk vulnerable populations, including people with Alzheimer's andrelated dementias (hereafter dementia) and their informal and formal support systems. Per the Centers forDisease Control & Prevention, implementation of social distancing ("remaining out of congregate settings,avoiding gathering, maintaining distance approximately 6 ft from others") is an essential public health practiceto reduce transmission of COVID-19 and a key strategy to guard at-risk populations (e.g., persons withdementia). Community-dwelling live-alone persons with dementia often require ongoing in-person informal(e.g., family or friends) and formal (e.g., home-based care providers) support to successfully engage in variousinstrumental activities of daily living. However, given present social distancing guidelines, this necessary in-person support is likely stymied. How social distancing impacts the execution and receipt/acceptance ofinformal/formal care remains unstudied. The supplement addresses these knowledge gaps by exploring howlive-alone persons with dementia and their informal and formal supports navigate and negotiate socialdistancing guidelines. Leveraging the large recruitment databases from the parent study, Aging at Home Alonewith Alzheimer's and Related Dementias, we propose to conduct an ancillary multi-perspective exploration(N=41) with key informal and formal care providers of live-alone persons with dementia. Together with expertsin the field of dementia and communicable diseases, the parent study's theoretically driven interview guide hasbeen modified to be disease-specific (COVID-19). This ancillary data collection offers a unique andcomprehensive strategy to explore the complex and important perspectives of informal and formal careproviders addressing three specific aims: 1. Explore how social distancing impacts the care & well-being oflive-alone persons with dementia and their informal caregivers; 2. Identify how formal support providers, whoserve community-dwelling persons with dementia, navigate social distancing requirements and its impact onpatient care; 3. Explore informal and formal care providers' perspectives of discrimination and stigmatization.The proposed supplement will address each specific aim using code-based analysis in ATLAS.ti. The proposedresearch offers an effective and immediate ancillary data collection strategy, rarely available within time-intensive qualitative inquiry, to address a complex and vital public health concern. Findings will provide acomprehensive understanding of how live-alone persons with dementia and their carers approach, prioritize,and/or withdraw from various care provisions. Knowing the "how" will provide data necessary to developcontextually appropriate care and support plans during critical public health crises that require physicaldistancing for prolonged periods.