TALLAHASSEE, Fla. — The Alzheimer's Association released a special report Tuesday on "Race, Ethnicity and Alzheimer's."
In the report, researchers found disparities between people battling the disease, ranging from trust in the healthcare system, costs of treatment and representation in research.
Non-white populations expected and experienced more barriers when accessing dementia care and are less confident that they can access health professionals who understand their ethnic and racial backgrounds and experiences, according to the report.
Of the reported statistics, 49% of Black Americans reported experiencing health-care discrimination, where 42% of Native Americans reported experiencing health-care discrimination, and a third of Asian Americans and Hispanics.
Black Americans also had higher costs of care than white and Hispanic Americans because of more co-morbidities and preventable hospitalizations.
Fewer than 50% of Black Americans also felt they had access to culturally competent providers.
Keith Gibson, director of programs for the Alzheimer's Association in Southeast Florida, said he was not shocked by the findings.
"I think it's so important because it validates the statistic that has always been there, that African-Americans are two times as likely to have the disease. Hispanics are 1 1/2 times as likely to have the disease," Gibson said.
He lost his brother to vascular dementia when his brother was only in his 50s. Gibson has been passionate as an advocate for other families serving as caretakers.
Gibson supports the report's call to action to include more diversity in clinical trials and he supports cultivating more diverse teams of researchers.
"We need to recruit more minorities into our studies to have that cure or means of slowing the disease down to be universal," Gibson said.
He said the Alzheimer's Association is also working harder to reach out to communities of color and build their trust.
"With this report, it just gives us more fuel to our fire and we're looking to engage these communities to find out how we can be a better community partner," Gibson said.
Ilean Zamlut's mother, Ixia, of Cuban descent, was diagnosed with Alzheimer's disease in 2012.
"She was super active," Zamlut said. "She was a schoolteacher in Palm Beach County for over 20 years. She was an art teacher, a social butterfly, avid dancer, the whole nine yards."
Ixia was only in her 60s when her husband noticed concerning changes.
"My father sent her to write a check, to cash a check at the bank, and she couldn't fill out the check anymore," Zamlut said. "And he started noticing that her grocery lists, some of the words were missing letters. Like apple, she would spell APL."
Ixia needs help with most daily tasks. But music still gives the family a reminder of what Ixia loved.
"If we put on music, inexplicably, her feet start tapping to the rhythm," Zamlut said.
She also was not surprised by the stark differences in treatment reported by communities of color but said thankfully, her mother has received good care. But there is a lot of work needed to eliminate stigmas that, she said, still exist in the Hispanic population.
"Especially, I think, in the Hispanic community, people are embarrassed by it or they try to attribute it to something else," Zamlut said.
Zamlut also works with the Alzheimer's Association, planning walks, and works with the Alzheimer's Impact Movement, advocating for Alzheimer's in Tallahassee.
The Alzheimer's Association Rally in Tally is taking place March 9-11.
Registration is underway. To participate virtually, click here.
Anyone wanting more information about Alzheimer's and resources available can call 800-272-3900.
