The Medicare hospice benefit was originally designed around a cancer disease paradigm but increasingly serves people living with dementia. At this time, almost half of all older adults receiving hospice care have dementia. Yet there is minimal evidence as to whether hospice benefits people living with dementia outside of nursing facilities. We asked whether and how the perceived quality of last-month-of-life care differed between people with and without dementia and whether hospice use among people living with dementia was associated with perceived quality of care compared with the quality of care for those who did not use hospice. We used nationally representative data from the National Health and Aging Trends Study and Medicare claims from the period 2011-17 to examine the impact of hospice enrollment on proxy perceptions of last-month-of-life care quality. Proxies of people living with dementia enrolled in hospice compared with proxies of those not enrolled more often reported care to be excellent (predicted probability: 52 percent versus 41 percent), more often reported having anxiety or sadness managed (67 percent versus 46 percent), and less often reported changes in care settings in the last three days of life (10 percent versus 25 percent). There were no differences in the impact of hospice on proxy ratings of care for people with and without dementia. Policy makers should consider these benefits when weighing changes to hospice policy and regulations that may affect people living with dementia.

Background: Racial and ethnic minoritized people with dementia (PWD) are at high risk of disenrollment from hospice, yet little is known about the relationship between hospice quality and racial disparities in disenrollment among PWD. Objective: To assess the association between race and disenrollment between and within hospice quality categories in PWD. Design/Setting/Subjects: Retrospective cohort study of 100% Medicare beneficiaries 65+ enrolled in hospice with a principal diagnosis of dementia, July 2012-December 2017. Race and ethnicity (White/Black/Hispanic/Asian and Pacific Islander [AAPI]) was assessed with the Research Triangle Institute (RTI) algorithm. Hospice quality was assessed with the publicly-available Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey item on overall hospice rating, including a category for hospices exempt from public reporting (unrated). Results: The sample included 673,102 PWD (mean age 86, 66% female, 85% White, 7.3% Black, 6.3% Hispanic, 1.6% AAPI) enrolled in 4371 hospices nationwide. Likelihood of disenrollment was higher in hospices in the lowest quartile of quality ratings (vs. highest quartile) for both White (adjusted odds ratio [AOR] 1.12 [95% confidence interval 1.06-1.19]) and minoritized PWD (AOR range 1.2-1.3) and was substantially higher in unrated hospices (AOR range 1.8-2.0). Within both low- and high-quality hospices, minoritized PWD were more likely to be disenrolled compared with White PWD (AOR range 1.18-1.45). Conclusions: Hospice quality predicts disenrollment, but does not fully explain disparities in disenrollment for minoritized PWD. Efforts to improve racial equity in hospice should focus both on increasing equity in access to high-quality hospices and improving care for racial minoritized PWD in all hospices.