'Providers Don't Even Listen': Barriers To Alzheimer's Care When You're Not White

Mar 1, 2021
Originally published on March 3, 2021 12:10 am

Many members of racial and ethnic minority groups say they face extra barriers when seeking care for a friend or family member with Alzheimer's disease.

Black, Hispanic, Asian and Native American caregivers were far more likely than whites to encounter discrimination, language barriers and providers who lack cultural competence, according to a report released Tuesday by the Alzheimer's Association.

"Among nonwhite caregivers, half say they've faced discrimination when navigating through the health care system," says Maria Carrillo, the association's chief science officer. Just 17% of white caregivers reported that sort of problem.

Black caregivers were most likely to report barriers, followed by Native American, Asian American and Hispanic caregivers.

One major concern reported by those trying to get treatment or other support for a loved one is that "providers don't even listen to what they are saying, perhaps because of their race, color or ethnicity," Carrillo says. "What they're experiencing is actually affecting their care," she notes.

The report is based on two nationwide surveys done late last year and released as part of the Association's annual Facts and Figures publication.

Among the other findings:

  • Two-thirds of Black Americans, about 40% of Native and Hispanic Americans, and 34% of Asian Americans believe it is harder for them to get excellent care for Alzheimer's disease or other dementia
  • Most Black Americans and more than a third of other minority groups think medical research is biased against people of color.
  • Fewer than half of Black and Native Americans feel confident they have access to providers who understand their ethnic or racial background and experiences.

The results are especially concerning because Black and Hispanic Americans appear to be more likely than whites to develop Alzheimer's and other forms of dementia.

Also, COVID-19 has disproportionately affected both people of color and people with Alzheimer's. In 2020 the number of deaths from Alzheimer's was 16% higher than expected, according to government statistics.

Among the barriers reported by nonwhite respondents in the surveys were providers who didn't speak their language or didn't understand their culture.

Carrillo, who is Mexican American, says her own family saw this while caring for her husband's parents, who died with Alzheimer's.

"My in-laws were only Spanish speakers and so for us that was a really important thing," Carrillo says. But she and her family had difficulty finding residential care where Spanish was spoken and Mexican meals were available. So they ultimately decided to keep both parents at home.

Some institutions involved in Alzheimer's care and research are working to improve cultural competency among those working in the field. But they are running out of time, Carrillo says.

"By 2050, Nearly 40% of the older population will be nonwhite Americans," she notes, "and so this needs to happen soon."

The survey underscores with numbers what many people of color have experienced personally.

"Was I surprised? No," says Alice Mukora, an African American researcher at the Allen Institute for Brain Science in Seattle, whose job includes studying Alzheimer's disease.

People who look like her often have bad experiences with the health care 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 during the birth of her first child by providers who didn't want to give her pain medication because they thought she was exaggerating, Mukora says.

Mukora was also unsurprised by the survey's finding that people of color are more skeptical about Alzheimer's research and that just half of Black Americans said they trust that a cure for Alzheimer's would be shared equally.

COVID-19 may have amplified those doubts by highlighting racial disparities in access to care, she says. And groups who can't get care are less likely to trust the motives of a health care system when it offers them an experimental Alzheimer's drug or a new vaccine for COVID-19.

As a brain scientist, Mukora understands the need to enroll diverse populations in Alzheimer's research. But she says that would be more likely to happen if people of color had better experiences getting Alzheimer's care.

Some providers need to try a different approach, she says. "You're in conversation with someone — you're not giving them a lecture. You're working with someone to see what they need, what they want, and maybe recalibrating to meet those needs."

When providers do that, Mukora says, people of color may be more interested in helping to test a potential cure.

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STEVE INSKEEP, HOST:

A new report finds that when people are seeking care for Alzheimer's, their race makes a difference in the care they receive. Nonwhite Americans often face discrimination and a lack of cultural sensitivity. NPR's Jon Hamilton has more.

JON HAMILTON, BYLINE: The report is based on two nationwide surveys done late last year for the Alzheimer's Association. Maria Carrillo, the group's chief science officer, says responses to the survey differed dramatically depending on a person's race.

MARIA CARRILLO: Among nonwhite caregivers, half say they've faced discrimination when navigating through the health care system, with a top concern being that providers don't even listen to what they're saying, perhaps because of their race, color or ethnicity.

HAMILTON: Just 17% of white caregivers reported that sort of problem. Carrillo says Black caregivers were most likely to report barriers, followed by Native Americans, Asian Americans and Hispanics.

CARRILLO: What they're experiencing is actually affecting their care.

HAMILTON: That's especially troubling because Black and Hispanic Americans appear to be more likely than whites to develop Alzheimer's and other forms of dementia. One barrier reported by Hispanic respondents was encountering providers who didn't speak their language or didn't understand their culture. Carrillo, who is Mexican American, says her own family saw this while caring for her husband's parents, who died with Alzheimer's.

CARRILLO: My in-laws both were only Spanish speakers, and so for us, that was a really important thing, right? Looking for providers, sometimes not even able to find them and, actually, ultimately, keeping them at home.

HAMILTON: Some institutions involved in Alzheimer's care are working to improve their relationships with minority communities, but Carrillo says they are running out of time.

CARRILLO: By 2050, nearly 40% of the older population will be nonwhite Americans, and so this needs to happen soon.

HAMILTON: The survey puts numbers behind what many people of color have experienced personally.

ALICE MUKORA: Was I surprised? No.

HAMILTON: Alice Mukora is a data analyst at the Allen Institute for Brain Science in Seattle. Her job includes research on Alzheimer's disease. Mukora is also African American, and she says people who look like her often have bad experiences with the health care system.

MUKORA: I know someone who gave birth to their second child and almost refused to go to the hospital for it because it was so traumatizing to her, as far as the way that she was treated and people responding to her pain adequately without thinking that she was exaggerating. And it was just such a negative experience that she didn't want to give birth in a hospital ever again.

HAMILTON: Mukora was also unsurprised by the survey's finding that people of color are more skeptical about Alzheimer's research. For example, just half of Black Americans said they trust that a cure for Alzheimer's would be shared equally. Mukora says COVID-19 may have amplified those doubts by highlighting disparities in access to care, and she says groups who can't get care are understandably cautious when they're offered an experimental Alzheimer's drug or, say, a new vaccine for COVID-19.

MUKORA: People maybe feeling a little hesitant to be the first round to get it makes sense to me because if we're not being treated as people worthy of real-time care but the first to now test out something, does it make sense?

HAMILTON: As a brain scientist, Mukora understands the need to enroll diverse populations in Alzheimer's research, and she says that would be more likely to happen if people of color had better experiences trying to get Alzheimer's care.

MUKORA: You're in conversation with someone. You're not giving them a lecture. You're working with someone to see what they need and what they want and maybe recalibrating to meet those needs.

HAMILTON: Then, Mukora says, that person might be interested in testing a potential cure.

Jon Hamilton, NPR News.

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