As a researcher at the Allen Institute for Brain Science in Seattle, Alice Mukora understands the need to involve diverse populations in Alzheimer’s research. But that would be more likely if people of color had a better experience treating Alzheimer’s. Siri Stafford / Getty Images Hide caption
Siri Stafford / Getty Images
Siri Stafford / Getty Images
Many racial and ethnic minority groups report additional barriers to finding a friend or family member with Alzheimer’s disease.
Black, Spanish, Asian and Native American carers were far more likely than whites to face discrimination, language barriers and a lack of providers cultural competenceafter a report published Tuesday by the Alzheimer’s Association.
“Among non-white caregivers, half say they were discriminated against while navigating the health system,” he says Maria Carrillo, the chief science officer of the association. Only 17% of white caregivers reported such problems.
Black caregivers were most likely to report barriers, followed by Native American, Asian, and Hispanic caregivers.
A primary concern of those trying to get treatment or other support for a loved one is that “providers don’t even listen to what they’re saying, possibly because of their race, color, or ethnicity,” says Carrillo. “What they experience actually affects their care,” she notes.
The report is based on two nationwide surveys carried out late last year and published as part of the association’s annual release of facts and figures.
Among the other findings:
- Two-thirds of Black Americans, about 40% of Native Americans and Hispanics, and 34% of Asian Americans believe it is more difficult for them to get excellent care for Alzheimer’s or other dementias
- Most black Americans and over a third of other minority groups believe that medical research is biased against people of color.
- Fewer than half of black and Native American people are confident they have access to providers who understand their ethnic or racial background and experience.
The results are particularly worrying as they appear to be black and Hispanic Americans more likely than whites to develop Alzheimer’s disease and other forms of dementia.
In addition, COVID-19 has disproportionately affected both people of color and people with Alzheimer’s disease. In 2020, the number of Alzheimer’s deaths was 16% higher than expected, according to government statistics.
Barriers reported by non-white respondents in the surveys included providers who did not speak their language or understood their culture.
Carrillo, a Mexican, says her own family saw this while caring for her husband’s parents who died of Alzheimer’s.
“My in-laws only spoke Spanish and that was really important to us,” says Carrillo. But she and her family struggled to find home care that spoke Spanish and offered Mexican meals. So they finally decided to leave both parents at home.
Some Alzheimer’s care and research institutions are working to improve the cultural literacy of those working in the field. But they’re running out of time, says Carrillo.
“By 2050, nearly 40 percent of the older population will be non-white Americans,” she notes, “and it has to be soon.”
The survey underlines with numbers what many colored people have personally experienced.
“Was I surprised? No,” says Alice Mukora, an African American researcher at the Allen Institute for Brain Science in Seattle whose role includes the study of Alzheimer’s disease.
People who look like them often have bad experiences with the healthcare system, Mukora says.
“I know someone who gave birth to their second child and almost refused to go to the hospital,” she says. The woman had been traumatized by vendors who refused to give her pain medication while giving birth to her first child because they thought she was exaggerating, Mukora says.
Mukora wasn’t surprised either when the survey found that people of color are more skeptical of Alzheimer’s research and that only half of black Americans trust a cure for Alzheimer’s disease to be shared equally.
COVID-19 may have compounded those doubts by highlighting racial differences in access to care, she says. And groups that cannot be cared for are less likely to trust a health system’s motives when it offers them an experimental Alzheimer’s drug or a new vaccine against COVID-19.
As a brain researcher, Mukora understands the need to involve different population groups in Alzheimer’s research. But she says it would be more likely if people of color had better experiences with treating Alzheimer’s.
Some providers need to try a different approach, she says. “You’re talking to someone – you’re not giving a lecture. You are working with someone to see what they need, what they want, and maybe re-calibrate to meet those needs.”
When vendors do this, people with color may be more interested in testing a possible cure, Mukora says.