Race, ethnicity linked to end-of-life care disparities for those with dementia
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SAN DIEGO — Substantial unmet end-of-life care needs among older adults with dementia exist in traditionally underrepresented groups compared with white individuals, according to a presenter at the Alzheimer’s Association International Conference.
“If we look at patient journey from diagnosis to death, we found that dementia diagnosis delays were common across all racial and ethnic groups,” Paige Lin, PhD, of Tufts Medical Center and Tufts University School of Medicine, said during her presentation.
Lin and colleagues sought to examine how dementia end-of-life care utilization and patient treatment preferences differed by race and ethnicity, specifically non-Hispanic Black, Hispanic and non-Hispanic white populations.
They used U.S. national survey data from the Health and Retirement Study linked with Medicare and Medicaid claims to include a sample of 5,058 individuals aged 65 years or older, diagnosed with dementia, who died between 2000 and 2016. Frequency and costs of hospice care, ED visits and hospitalizations during the last 180 days of life among Medicare decedents with dementia were analyzed, as well as the proportion of dementia decedents with advance care planning and end-of-life care preferences.
Results showed that 48% of decedent beneficiaries with dementia used hospice over the last 180 days of life. From that sample, only one in three hospice users received the service for 7 days or less.
Among dementia decedents, non-Hispanic Black and Hispanic individuals used more ED and inpatient services and incurred 50% or higher inpatient expenditures at end of life than non-Hispanic white individuals. More non-Hispanic 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 non-Hispanic Black and Hispanic individuals compared with non-Hispanic white individuals (21% and 21% vs. 57%).
Data additionally revealed that more non-Hispanic Black and Hispanic decedents with dementia prepared written instructions to receive all care possible to prolong their life, whereas more non-Hispanic white decedents preferred to limit care in certain situations, withhold treatments and forgo extensive life-prolonging measures.
“Although the data we have doesn’t allow us to pinpoint the exact cause, studies have pointed to a number of contextual factors that influence the type of care, the intensity of care a person receives at the end of life,” Lin stated in the presentation.