Dementia patients receive different intensity of care based on race, ethnicity, study finds

A recent study found that amongst Medicare users with dementia, ethnic and racial minorities received the most intensive end-of-life care.

Elizabeth Luth, an assistant professor in the Department of Family Medicine and Community Health and lead author of the study, said it was conducted using data collected from a randomized sample of 463,590 Medicare patients who died between 2017 and 2018. 

The research's sample data was limited in that it did not disclose information about the severity of patients' dementia, the patient's location and whether the end-of-life care patients received was in line with their and their family’s wishes, according to the study.

Luth said the study revealed that more than 51 percent of the patients from the sample had a dementia-related issue on their record. The study also found that non-Hispanic white patients with dementia experienced less intensive end-of-life care than those without dementia, she said.

This trend can be attributed to how dementia patients may undergo cognitive impairment that can limit their ability to articulate their needs, Luth said. For these patients, this lack of communication can result in family members deciding to provide them with less intensive care including hospice treatment, she said.

On the other hand, dementia patients from racial and ethnic minority groups were actually more likely to receive intensive end-of-life care, Luth said. While the study was unable to conclude the cause of the trend, previous literature suggests some social factors may play a role, she said.

“Prior research points to a number of possible factors (for this trend), including individual preference, poorer communication between physicians and patients or families about end-of-life decision making, systemic racism or discrimination,” Luth said.

Additionally, she said this study’s conclusions agree with previous research that found a higher prevalence of dementia in non-Hispanic Black and Hispanic populations. While the reason for the correlation is not clear, systemic racism, access to healthcare and socioeconomic status could be potential contributors, she said.

There is an association between lower socioeconomic status and dementia, and since non-Hispanic Black and Hispanic individuals encounter higher poverty rates, they may be especially vulnerable to the disease, Luth said.

“Systemic racism creates barriers to accessing high-quality health care and dementia treatment, which could also be a factor,” she said. “Some studies have identified a link between perceived discrimination and poorer cognitive functioning.”

Understanding the differences in intensive end-of-life treatment and why they exist is important for researchers, Luth said. The next goals for this research include designing programs and practices that promote end-of-life care that has patients’ values in mind, she said. 

“I think the important takeaway is that dementia is common among people who die, but experiences of end-of-life care are not the same for everyone," Luth said. "Some groups tend to get less intensive care at the end-of-life (e.g. non-Hispanic whites), while others tend to get more intensive care (non-Hispanic Black, Asian/Pacific Islander and Hispanic individuals, in particular). It is difficult to make broad statements about the experiences of persons with dementia at the end of life.”