The 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 United States, it puts exceptional burden on at-risk vulnerable populations, including people with Alzheimer?s and related dementias (hereafter dementia) and their informal and formal support systems. Per the Centers for Disease 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 practice to reduce transmission of COVID-19 and a key strategy to guard at-risk populations (e.g., persons with dementia). 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 various instrumental 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 of informal/formal care remains unstudied. The supplement addresses these knowledge gaps by exploring how live-alone persons with dementia and their informal and formal supports navigate and negotiate social distancing guidelines. Leveraging the large recruitment databases from the parent study, Aging at Home Alone with 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 experts in the field of dementia and communicable diseases, the parent study?s theoretically driven interview guide has been modified to be disease-specific (COVID-19). This ancillary data collection offers a unique and comprehensive strategy to explore the complex and important perspectives of informal and formal care providers addressing three specific aims: 1. Explore how social distancing impacts the care & well-being of live-alone persons with dementia and their informal caregivers; 2. Identify how formal support providers, who serve community-dwelling persons with dementia, navigate social distancing requirements and its impact on patient 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 proposed research 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 a comprehensive 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 develop contextually appropriate care and support plans during critical public health crises that require physical distancing for prolonged periods.
The proposed supplement expands exploration on people living alone with Alzheimer?s and related dementias (ADRD) to include evaluation of how social distancing impacts the formal and informal care of this vulnerable population. Exploration in this area corresponds with NIH?s interest in high priority research that focuses on COVID-19?s effect on the care and well-being of vulnerable older adult populations, including individuals with ADRD. Findings will guide contextually appropriate care and support plans during critical public health crises requiring physical distancing, thus, having major policy and public health implications.
