RIVERVIEW, Fla — Finding joy in the little things is at the heart of the care Vecelia Johnson provides for her 85-year-old father, Carl Williams, who's been diagnosed with dementia.
"He loves to drink water, so that's good," she said, "Probably about 5 years ago, we recognized there was some signs of forgetting things like keys or forgetting to pay bills that he was historically known for paying on time."
According to the Alzheimer's Association, older Black Americans, like Carl, are two times more likely than older white Americans to develop Alzheimer's or dementia.
Experts tell ABC Action News that research on the cause of this disparity for Black Americans and their inclusion in clinical trials for treatment is lacking.
Professor Ram Bishnoi works at the USF Health Byrd Alzheimer's Institute. He said a perfect example of this came up in a recent round of clinical trials for the newly approved Alzheimer's treatment Leqembi (Lecanemab).
The drug works to reduce the build-up of a protein in the brain called Amyloid beta that researchers say can make the disease worse.
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But data from that drug trial shows that of the nearly 1800 participants, just over 40 were black
"We have a very limited data from the African American population. Most of our data is from the white people," said Professor Bishnoi.
ABC Action News looked through several recent reports that claim many Black participants were screened out of the trial because they didn't have enough protein build-up in their brains for the drug to be effective.
Which led to some follow-up questions.
"Are these patients possibly being misdiagnosed, and they may have a different form of dementia? Or are we seeing Alzheimer's present itself differently in different races?" asked ABC Action News reporter Rochelle Alleyne.
According to Professor Bishnoi, both options are plausible.
"You can say that Black people will need less amyloid plaques to create [the] Same amount of cognitive impairment, compared to white people," he said.
They are differences that a leader with the Alzheimer's Association of Florida said should be taken into account by researchers.
"Does a threshold for an African American, does it need to be the same for [the] white population or Hispanic population, those are definite questions that need to be looked at," said Stefanie Wardlow.
While Professor Bishnoi said the Byrd Alzheimer's Institute is working to address disparities in clinical trials and research locally—Johnson added that she also wants to see the Black community step up and seek out resources to help.
"The best advice I could give, honestly, is you have to reach out for support. Nobody is going to knock on your door and say, 'Hey, I heard somebody in your house has Alzheimer's or dementia,'" she said.
