Key Points Question How does use of hospice and hospital services at the end of life differ by race and ethnicity among patients with dementia? Findings This cohort study found that non-Hispanic Black and Hispanic decedents with dementia used less hospice but more emergency department and inpatient services, and incurred roughly 60% higher Medicare inpatient expenditures at the end of life, compared with non-Hispanic White decedents. The proportion of dementia beneficiaries completing advance care planning was significantly lower among non-Hispanic Black and Hispanic decedents compared with non-Hispanic White decedents. Meaning These results highlight the importance of understanding how end-of-life care utilization and treatment preferences among patients with dementia differ across racial and ethnic groups.

BackgroundOlder adults with dementia have difficulties communicating their treatment preferences and experience end‐of‐life burdensome interventions with discomfort and limited benefits. This study compared utilization of burdensome interventions during the last 90 days of life among Medicare fee‐for‐service (FFS) beneficiaries with no dementia, non‐advanced dementia, and advanced dementia.MethodThis study utilized data from 2000‐2016 Health and Retirement Study (HRS) linked with Medicare and Medicaid claims, and HRS Exit Interviews. We quantified rates of imaging tests and life‐sustaining treatments during the last 90 days of life among those with no dementia, non‐advanced dementia, and advanced dementia. Life‐sustaining treatments include tube feeding, intensive care unit care, cardiopulmonary resuscitation, and invasive mechanical ventilation. Among patients with a claims‐based diagnosis of dementia, we classified them as having advanced dementia if they had three or more activities of daily living limitations and any diagnosis of malnutrition, pressure ulcer, incontinence, or aspiration pneumonia. We used logistic regression to examine factors associated with end‐of‐life imaging tests and life‐sustaining treatments.ResultA higher proportion of beneficiaries with non‐advanced dementia (68%) and advanced dementia (79%) had end‐of‐life imaging tests, compared to those without dementia (57%) (p<0.01). Beneficiaries with dementia were more likely than non‐dementia beneficiaries to receive these imaging tests, controlling for patient characteristics (non‐advanced dementia: OR = 2.2 [95% CI 2.0‐2.5]; advanced dementia: OR = 5.4 [4.5‐6.5]). The proportion of receiving end‐of‐life life‐sustaining treatments was lower among the non‐advanced dementia cohort (23%), compared to non‐dementia (27%) and advanced‐dementia (27%) individuals (p<0.01). After adjusting for patient characteristics, beneficiaries with dementia were more likely than those without dementia to receive at least one life‐sustaining treatment (non‐advanced dementia: OR = 1.1 [1.0‐1.2]; advanced dementia: OR = 1.9 [1.6‐2.3]). Younger age, survey self‐respondents, beneficiaries with fewer instrumental activities of daily living limitations and no advance care planning were more likely to have end‐of‐life imaging tests and life‐sustaining treatments.ConclusionOur findings suggest that older adults with dementia, especially advanced dementia, are more likely to receive end‐of‐life burdensome interventions compared to individuals without dementia. Advance care planning involving patients with dementia, their families, and physicians about end‐of‐life treatment may improve the quality of care.

Background:We examined racial and ethnic differences in medication use for a representative US population of patients with Alzheimer's disease and related dementias (ADRD). Methods:We examined cholinesterase inhibitors and memantine initiation, nonadherence, and discontinuation by race and ethnicity, using data from the 2000-2016Health and Retirement Study linked with Medicare and Medicaid claims.Results: Among newly diagnosed ADRD patients (n = 1299), 26% filled an ADRD prescription ≤90 days and 36% ≤365 days after diagnosis. Among individuals initiating ADRD-targeted treatment (n = 1343), 44% were non-adherent and 24% discontinued the medication during the year after treatment initiation. Non-Hispanic Blacks were more likely than Whites to not adhere to ADRD medication therapy (odds ratio: 1.50 [95% confidence interval: 1.07-2.09]).Discussion: Initiation of ADRD-targeted medications did not vary by ethnoracial group, but non-Hispanic Blacks had lower adherence than Whites. ADRD medication non-adherence and discontinuation were substantial and may relate to cost and access to care.

Background Bipolar disorder is associated with functional impairment and diminished health-related quality of life (HRQoL). The purpose of this study was to estimate the annual per patient direct healthcare costs, indirect costs, and HRQoL of patients with bipolar disorder by depressive symptom severity and overall compared to the general population in the US. Methods This cross-sectional study used self-reported data from the 2020 US National Health and Wellness Survey. Adult respondents who reported bipolar disorder symptoms in the past 12 months and/or a diagnosis of bipolar disorder were identified (bipolar disorder cohort) and were further classified by depressive symptom severity based on Patient Health Questionnaire (PHQ-9) scores (none/mild = 0–9, moderate = 10–14, severe = 15–27). Annualized direct healthcare costs and indirect costs were calculated from 6-month healthcare resource utilization and work productivity, respectively. A general population cohort was constructed using 2:1 propensity score matching. Multivariate regression models of all-cause hospitalizations in the past 6 months, annualized direct healthcare costs, annualized indirect costs, and HRQoL (eg, EuroQol 5-Dimension Health Questionnaire (EQ-5D)) controlled for confounders (demographic and clinical characteristics). Results Of 3583 adults meeting pre-specified criteria for bipolar disorder, 1401 (39.1%) reported none/mild, 889 (24.8%) moderate, and 1293 (36.1%) severe depressive symptom severity. Additionally, 3285 (91.7%) were matched to 6570 adults in the general population. Compared to the general population, adjusted mean hospitalizations (0.53 vs. 0.30), annualized per patient direct healthcare costs ($20,846 vs. $11,391), and indirect costs ($14,795 vs. $9274) were significantly greater for the bipolar disorder cohort (all p < 0.001); adjusted HRQoL (EQ-5D: 0.69 vs. 0.79) was significantly worse (p < 0.001). By depressive symptom severity, adjusted mean hospitalizations (none/mild = 0.30, moderate = 0.50, severe = 0.46), direct healthcare costs ($14,389, $22,302, $21,341), and indirect costs ($10,799, $17,109, $18,470) were significantly greater for moderate and severe compared to none/mild depressive symptom severity (all p < 0.01); adjusted HRQoL (EQ-5D: 0.77, 0.67, 0.59) was significantly worse (p < 0.001). Conclusions Among respondents with bipolar disorder, those with moderate to severe depression had greater direct healthcare costs and indirect costs as well as worse HRQoL than those with mild or no depressive symptoms. Treatment targeting reduction in depressive symptoms may reduce the economic and humanistic burden of bipolar disorder.

BackgroundThe pool of studies examining ethnoracial differences in hospice use and end‐of‐life hospitalizations among patients with dementia is limited and results are conflicting. This study examined how dementia end‐of‐life care utilization and patient treatment preferences differ by race and ethnicity.MethodsUsing U.S. national survey data from the Health and Retirement Study linked with Medicare and Medicaid claims, our sample included 5,058 beneficiaries aged ≥65 years diagnosed with dementia who died in 2000‐2016. We examined the frequency and costs of hospice care, emergency department (ED) visits, and hospitalizations during the last 180 days of life among Medicare decedents with dementia. We analyzed the proportion of dementia decedents with advance care planning and their end‐of‐life care preferences.ResultsLess than half of beneficiaries with dementia in our sample (48%) used hospice in the last 180 days of life; of these, one in three hospice users received the service for seven days or less. In adjusted analysis, non‐Hispanic (NH) Blacks, nursing home residents, and survey respondents represented by a proxy were less likely to use hospice, whereas older age, females, higher education, more severe cognitive impairment, and more IADL limitations were associated with higher hospice enrollment. Among dementia decedents, NH Blacks and Hispanics used more ED and inpatient services and incurred >50% higher inpatient expenditures at the end of life, compared with NH whites. More NH Black and Hispanic beneficiaries with dementia enrolled in hospice were subsequently admitted to the ED or hospital before death. The proportion of dementia beneficiaries completing advance care planning was significantly lower among NH Blacks and Hispanics compared with NH whites (21% and 21% vs. 57%, p<0.01). More NH Black and Hispanic decedents with dementia had written instructions choosing all care possible to prolong life, whereas more NH whites preferred to limit care in certain situations, withhold treatments, and forgo extensive life‐prolonging measures.ConclusionOur results highlighted substantial unmet end‐of‐life care needs among older adults with dementia, especially among NH Blacks and Hispanics. Medicare should consider alternative payment models to promote culturally competent end‐of‐life care and reduce low‐value interventions and costs among the population with dementia.