ADVANCE: Assessment of Disparities and Variation for Alzheimer's disease in Nursing home Care at End of Life

COVID-19 is a crisis in U.S. nursing homes (NHs), where residents with advanced dementia are at especiallyhigh risk of acquiring and dying of the virus. There is an urgent need to understand how to compassionately andeffectively care for these residents, maintain communication with family members, and protect the safety of allresidents and staff. Prior quantitative research highlighted persistent regional and racial variation in the intensityof care provided to NH residents with advanced dementia, and the pandemic is revealing profound racialdisparities in the general population. Little is known about the intersection of COVID-19, advanced dementia,and disparities. ADVANCE (Assessment of Disparities and Variation for Alzheimer's disease Nursing home Careat End of life), is an ongoing qualitative study that seeks to understand the drivers of regional and racial disparitiesin care provided to NH residents with advanced dementia. We have identified two high intensity and two lowintensity health referral regions (HRRs) (Rochester, NY, Boston, MA, Birmingham, AL, and Atlanta, GA) basedon tube-feeding and hospital transfers rates ascertained from recent Minimum DataSet data. Within each HRR,two high and low intensity NHs relative to all NHs in that HRR (16 NHs total) were identified. To date, we haverecruited, conducted site visits, and collected extensive qualitative data in 11 of these NHs in 3 HRRs. We haveacquired a rich dataset and conducted extensive analysis to examine how NH organizational culture and staffand proxies' perceptions influence the care residents with advanced dementia receive. The objective of thisadministrative supplement is to leverage the ADVANCE study infrastructure, with its established relationship toa diverse cohort of NHs and proxies, to explore the experience of residents with advanced dementia duringCOVID-19 from the lens of health care disparities. Qualitative data will be collected by interview with NH staffand proxy decision makers for NH residents with advanced dementia. Aim 1, will use remote, semi-structuredqualitative interviews with NH staff (medical providers, senior administrators, nurses, nursing assistants, andsocial workers) in the 11 ADVANCE NHs to explore their experiences caring for residents with advanceddementia during COVID-19 focusing on: care processes (testing, controlling transmission, managing COVID-19positive residents; connecting residents and families); decision-making processes (advance care planning,hospital transfer, communication with proxies); organizational resources (staffing and personal protectiveequipment); and personal experience (health, safety, and stress). Aim 2, will use remote, semi-structuredinterviews with proxies of advanced dementia resident (11 Black and 11 White) about their experience duringCOVID-19 focusing on: connecting with resident, NH response to the crisis, communicating with NH, decisionmaking (advance care planning, hospital transfer), and personal impact (health, coping and stress). IMPACT:The findings of this supplemental research will generate information needed to guide and inform the delivery ofequitable and culturally sensitive care to NH residents with advanced dementia during this crisis and beyond.