COVID-19 is a crisis in U.S. nursing homes (NHs), where residents with advanced dementia are at especially high risk of acquiring and dying of the virus. There is an urgent need to understand how to compassionately and effectively care for these residents, maintain communication with family members, and protect the safety of all residents and staff. Prior quantitative research highlighted persistent regional and racial variation in the intensity of care provided to NH residents with advanced dementia, and the pandemic is revealing profound racial disparities 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 Care at End of life), is an ongoing qualitative study that seeks to understand the drivers of regional and racial disparities in care provided to NH residents with advanced dementia. We have identified two high intensity and two low intensity health referral regions (HRRs) (Rochester, NY, Boston, MA, Birmingham, AL, and Atlanta, GA) based on 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 have recruited, conducted site visits, and collected extensive qualitative data in 11 of these NHs in 3 HRRs. We have acquired a rich dataset and conducted extensive analysis to examine how NH organizational culture and staff and proxies? perceptions influence the care residents with advanced dementia receive. The objective of this administrative supplement is to leverage the ADVANCE study infrastructure, with its established relationship to a diverse cohort of NHs and proxies, to explore the experience of residents with advanced dementia during COVID-19 from the lens of health care disparities. Qualitative data will be collected by interview with NH staff and proxy decision makers for NH residents with advanced dementia.
Aim 1, will use remote, semi-structured qualitative interviews with NH staff (medical providers, senior administrators, nurses, nursing assistants, and social workers) in the 11 ADVANCE NHs to explore their experiences caring for residents with advanced dementia during COVID-19 focusing on: care processes (testing, controlling transmission, managing COVID-19 positive residents; connecting residents and families); decision-making processes (advance care planning, hospital transfer, communication with proxies); organizational resources (staffing and personal protective equipment); and personal experience (health, safety, and stress).
Aim 2, will use remote, semi-structured interviews with proxies of advanced dementia resident (11 Black and 11 White) about their experience during COVID-19 focusing on: connecting with resident, NH response to the crisis, communicating with NH, decision making (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 of equitable and culturally sensitive care to NH residents with advanced dementia during this crisis and beyond.
COVID-19 is a crisis in American nursing homes (NHs). We will leverage the unique ADVANCE study infrastructure, with its established relationship to a diverse cohort of NHs in 3 health referral regions (Rochester, NY, Birmingham, AL, and Atlanta, GA) and 40 proxy decision makers (19 Black and 21 White), to conduct semi- structure interviews with NH staff and family members to explore the experience of residents with advanced dementia during COVID-19 from the lens of health care disparities. This critically important information is needed to guide and inform the delivery of equitable and culturally sensitive end-of-life care to NH residents with advanced dementia during this time of crisis and beyond.