ADVANCE: Assessment of Dispariries and Variation for Alzheimer's disease in Nursing home Care at End of Life - While comfort is the main goal of care for most nursing home (NH) residents with advanced dementia, they
commonly receive potentially burdensome interventions that may be of limited clinical benefit. Quantitative
studies conducted in the past 20 years demonstrate striking and persistent racial, regional and facility variations
in the intensity of end-of-life care provided to this population, particularly the use of two such archetypal
interventions, hospital transfers and tube-feeding. The main observations were: 1. Greater intensity of care
among Black versus White residents, 2. Greater intensity of care in the Southeastern US; and 3. Marked inter-
facility variation even among NHs in the same region. Quantitative studies clearly demonstrate these differences,
but do little to explain them. To better understand these patterns in order to target interventions to address them,
qualitative methods are needed. We previously used qualitative methods to show how NH organizational culture
helped explain facility variation in tube-feeding rates in advanced dementia, but that study was limited to two
South Carolina NHs, focused solely on feeding problems, and did not examine racial differences. With this
foundation, the main objective of the proposed study is to conduct a comprehensive qualitative study to better
understand the variations in intensity of care provided to residents with advanced dementia. The study will be
conducted in 16 NHs in 4 Hospital Referral Regions (HRRs) (4 NHs/HRRs). Using 2017-18 Minimum DataSet
data, 2 high and 2 low intensity HRRs will be selected (i.e., HRRs with tube-feeding and hospital transfer rates
both in the highest and lowest terciles relative to all HRRs in the U.S.). Then, within each HRR, 2 high and 2 low
intensity NHs will be selected (i.e., NHs with tube-feeding and transfer rates both in the highest and lowest
terciles relative to all NHs in that HRR). In Aim 1, various qualitative methods, including direct observations, in-
depth interviews with NH providers and proxies of residents with advanced dementia, and abstraction of NH
promotional material and policies, will be used to explore the influence of NH organizational culture on the
intensity of care. Findings will be compared between high and low intensity NHs, and between NHs in high and
low intensity HRRs. In Aim 2 data collected from interviews with proxies of Black (N≈32) and White (N≈32)
residents in these 16 NHs will be used to better understand racial differences in the intensity of care. Responses
will be compared between Black and White proxies, and between proxies in high and low-intensity NHs. IMPACT:
Quantitative research demonstrates profound variations in the care provided to NH residents with advanced
dementia, but it does little to explain them. We propose the first comprehensive qualitative study to help elucidate
organizational, cultural, and individual-level factors which contribute to these patterns of care. A better
understanding of the drivers of these differences is a key first step towards generating testable hypotheses to
guide the development interventions aimed at helping NHs deliver equitable and culturally-sensitive, high quality
end-of-life care to all the millions of Americans suffering with advanced dementia and their families.
