INTRODUCTION
Individuals living with dementia often have limited capacity to express their care preferences at the final stage of life, and therefore, are at risk of receiving end-of-life care that may not align with their preferences.1 While most people prefer to be at home in their final days of life,2 research has shown that individuals with dementia are less likely to die in a home or community setting compared to those without dementia.3,4 Studies also suggest that the percentage of individuals with dementia who died in a home or community setting has been increasing over time.5,6 This study sought to update the literature by examining the association between dementia status and site of death, and by comparing the trends in site of death between decedents with and without dementia using recent national data.
METHODS
We used the Medicare claims data and the Minimum Data Set (MDS), a federally-mandated clinical assessment of all nursing home residents. We included a 20% random sample of Medicare fee-for-service beneficiaries 66 years or older who died in 2016–2018. Dementia status was identified by a diagnosis of Alzheimer’s disease, related disorders, or senile dementia in the Chronic Condition Data Warehouse, which has been validated in prior research.7 We used MDS to supplement the Medicare claims data because MDS provides detailed information on long-term nursing home residents.
Our primary outcome was site of death with the following four categories: (1) home or community (e.g., assisted living facility); (2) acute care hospital; (3) nursing home; and (4) inpatient hospice care unit.8 Inpatient hospice care refers to short-term management of acute pain or other symptoms provided in an inpatient setting, such as in an acute care hospital, a nursing home, or a hospice-owned inpatient facility.
We compared site of death among individuals with and without dementia by chi-square test. We also compared the monthly trends in site of death between the two groups. To do so, we estimated linear trends in each of four sites of death for individuals with and without dementia separately, then we fit a linear regression including dementia status, time (month), and an interaction term between dementia status and time using the total sample. Analyses were performed using Stata/MP 16.1. The institutional review boards at the University of California, Los Angeles reviewed the study and waived informed consent.
RESULTS
Our study included 813,213 individuals (mean [SD] years of age, 82[9]; % female, 53%), of whom 49% had a diagnosis of dementia. The most common site of death among individuals with dementia was nursing home (39.6%). Individuals with dementia were less likely to die in a home or community setting (34.3% vs. 54.2%; P < 0.001) or in acute care hospitals (16.5% vs. 23.8%; P < 0.001), compared to those without dementia (Table 1).
Table 1.
Site of death by dementia status
| Total (n = 813,213) |
Individuals with dementia (n = 400,002) |
Individuals without dementia (n = 413,211) |
P value | |
|---|---|---|---|---|
|
| ||||
| Site of death, % (95% CI) | ||||
| Home or community | 44.4 (44.3 to 44.5) | 34.3 (34.1 to 34.4) | 54.2 (54 to 54.4) | < 0.001 |
| Nursing home | 25.9 (25.8 to 26) | 39.6 (39.4 to 39.7) | 12.7 (12.6 to 12.8) | < 0.001 |
| Acute care hospital | 20.2 (20.1 to 20.3) | 16.5 (16.4 to 16.6) | 23.8 (23.6 to 23.9) | < 0.001 |
| Inpatient hospice care unit | 9.5 (9.4 to 9.5) | 9.6 (9.5 to 9.7) | 9.3 (9.2 to 9.4) | < 0.001 |
Notes: Community includes assisted living facilities. Inpatient hospice care unit refers to hospice care provided in an inpatient setting, including acute care hospital, nursing home, or hospice-owned inpatient facility.
For both individuals with and without dementia, the percentages of those who died in a home or community setting and inpatient hospice care units increased between 2016 and 2018, and the percentage of those who died in nursing homes or acute care hospitals decreased (Figure 1). We found no evidence that the trends differed between individuals with and without dementia.
Figure 1. Trends in site of death by dementia status from 2016 to 2018.
Data points indicate unadjusted monthly percentages of site of death (A: home or community; B: Acute care hospital; C: Nursing home; and D: Inpatient hospice care unit) by dementia status based on 20% Medicare claims data and the Minimum Data Set 2016–2018. We estimated linear trends in each of four sites of death for individuals with and without dementia separately (solid lines), then we fit a linear regression including dementia status, time (month), and an interaction term between dementia status and time using the total sample to formally test whether monthly trends in site of death between the two groups differ. Abbreviation: pp, percentage points.
DISCUSSION
Using nationally representative data on Medicare fee-for-service beneficiaries, we found that more than one-third of individuals with dementia died in nursing homes in 2016–2018, and individuals with dementia were less likely to die in a home or community setting or acute care hospitals compared with individuals without dementia. Our findings suggest that many individuals with dementia live in nursing homes due to their cognitive and physical impairment and choose not to receive high-intensity treatments in their final days of life.9 These findings are consistent with the existing literature examining nursing home residents with dementia3 and national survey data.4
We also observed trends of a decrease in deaths in nursing homes and acute care hospitals and an increase in deaths in a home or community setting among both individuals with and without dementia between 2016 and 2018, similarly to previous studies based on death certificates5 and older Medicare claims data.6 Our findings might suggest that hospice use in community settings is continuing to become more common in both groups,10 although the gaps between individuals with and without dementia have not been narrowed.
Our study has limitations including potential measurement errors in dementia diagnosis based on administrative claims data; inability to evaluate long-term trends; limited generalizability of our findings to younger populations or those covered by Medicare Advantage; and inability to investigate whether site of death was concordant with individual preferences.
Funding/Support:
This study was supported by the National Institute on Aging of the National Institutes of Health (NIH) under Award Number R01AG068633 (Dr. Tsugawa). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funders.
Footnotes
Conflict of Interest: The authors declare no conflicts of interest.
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