What Do We Know About Hospice Enrollment for Nursing Home Residents with Cognitive Disabilities? A Systematic Review

Abstract

Background: At least 42% of nursing home (NH) residents live with cognitive disability, commonly associated with neurocognitive disorders (e.g., dementia), defined as difficulty concentrating, learning new things, remembering, or making decisions. The population of individuals with cognitive disabilities who qualify for hospice (end-of-life [EOL] care that reduces symptoms and promotes quality of life) in NHs is increasing. However, little is known about hospice enrollment for this population. This information is essential to clarify disparities in hospice access and guide efforts to improve EOL care for this population. Objective: To systematically review available evidence on hospice enrollment among US NH residents with cognitive disabilities. Methods: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A comprehensive search of PubMed, CINHAL, Web of Science, and Google Scholar was conducted to identify studies. Peer-reviewed, English-language articles published before February 28, 2025, were included. The Joanna Briggs Institute Analytical Cross-Sectional Studies Appraisal Tool was used to assess study quality. Results: We screened 479 titles and abstracts and reviewed 36 full-text articles. Twelve studies met the inclusion criteria. In seven of the 12 studies, a substantial proportion of NH decedents with cognitive disabilities were not enrolled in hospice. Factors associated with increased likelihood of hospice enrollment at the time of death included female sex (n = 2), White race (n = 2), terminal diagnosis other than cognitive disability (n = 1), and increased prevalence of dementia in NH regardless of the individual's dementia status (n = 1). Discussion: This review is the first to systematically examine hospice enrollment among NH residents with cognitive disabilities. Hospice enrollment varied across studies but was consistently lower for NH decedents with cognitive disabilities compared to those without. Future research should include the broader cognitive disability community to assess hospice enrollment and other EOL outcomes, clarify targets for intervention, and address barriers to care.

Keywords: adult and older adult; cognitive disability; dementia; end-of-life care; hospice.