2026 Theses Doctoral

Health Disparities in Hospice Care for Nursing Home Residents with Dementia

Winogora, Victoria M.

This dissertation focuses on the current state of hospice care for United States (US) nursing home (NH) residents who have Alzheimer’s disease and related dementias (ADRD). To better capture the population of NH residents with ADRD, a novel method to identify individuals who lack formal diagnoses but have cognitive disability (CD) was employed. CD is defined as serious difficulty concentrating, learning new things, remembering, or making decisions, and is a clinical symptom of ADRD.

Nearly 1.2 million individuals reside in US NHs, and a conservative estimate from July 2023 is that 800,000, or 66%, of NH residents have a CD. Many individuals with CD lack formal diagnoses, particularly given that ADRD diagnoses are often delayed and/or missed. Individuals with CD have been identified by the National Institutes of Health as a vulnerable population experiencing disparities in health outcomes, including end-of-life (EOL) care such as hospice.

Hospice is a government benefit providing specialized, interdisciplinary care. Hospice is known to reduce unnecessary and burdensome care while also improving quality of life for patients and their families. Little is known, however, about differences in hospice enrollment and hospice quality of care among NH residents with CD and ADRD compared to those with neither condition. While hospice is recommended for all qualifying patients, 67% of all NH residents who die in NHs (i.e., 804,000 individuals in 2023) are not enrolled in hospice at the time of their death. It is not known how many of these residents have CD, as there is a lack of knowledge on hospice use and quality of hospice care for NH residents who lack formal ADRD diagnoses.

The overall objective of this dissertation is to inform future practices to improve outcomes for NH residents with ADRD and CD nearing EOL. This dissertation is in the 3-paper format with Chapter 1 serving as the introduction and Chapter 5 serving as the conclusion. The dissertation analyses were to (Study 1, Chapter 2) assess the current scientific evidence on hospice enrollment in NHs for individuals with ADRD and CD; (Study 2, Chapter 3) examine the association between ADRD, CD, and the timing of hospice enrollment for US NH decedents from 2016 through 2022; and (Study 3, Chapter 4) examine the association between ADRD, CD, and location of death for US NH decedents from 2016 through 2022.

Study 1 was a systematic review to evaluate the current scientific evidence on hospice enrollment in NHs for individuals with ADRD and CD. The study demonstrated that decedents with ADRD were under-enrolled in hospice at the time of their deaths when compared to their peers with other terminal ailments (e.g., cancer, heart failure). Additionally, the study affirmed that decedents with CD were often not included in hospice research, suggesting that research with a focus on hospice care for decedents with CD warrants exploration.

Studies 2 and 3 report findings from analyses of a cohort of NH decedents with ADRD and CD from 2016 through 2022. Study 3 examines the differences in hospice enrollment related to ADRD and CD in NH decedents. Study 4 analyzes location of death for NH decedents with ADRD and CD who used hospice services, to assess quality of hospice care for this population. The key findings from this work indicate that hospice use for the ADRD population has increased in recent years. We found that decedents with ADRD, and particularly those with CD, enrolled in hospice early, 4 – 6-months prior to death, more than those with neither condition.
However, despite an increase in use and earlier use, we also found that individuals with CD are at increased risk of dying in the hospital, rather than in place.

This dissertation makes valuable contributions to our current understanding of hospice use and care for US NH decedents with ADRD and CD. The key findings indicate that hospice use for the ADRD population has increased in recent years. However, despite an increase in use, we found that individuals with CD are at increased risk of dying in the hospital, rather than in place, a poor-quality indicator for hospice care. These findings highlight the need for additional assessments of hospice quality for this population and reiterate the need to focus not just on hospice enrollment, but hospice care quality, to ensure accessible, high-quality EOL care for individuals with ADRD and CD in US NHs.