Recent Alzheimer's advancements leave Black and Latino patients behind

Althea Jordan sits in her white recliner while her physical therapist, Danielle Heltzel, kneels on the floor in front of her to go through a series of exercises to help move her legs.

“Did I ask if your knees hurt? Are they sore? They ache?” Heltzel asked.

Jordan mumbles quietly affirming some leg pain. She’s in the late stages of Alzheimer’s Disease, but the 73-year-old is also recovering from a recent virus, making her quieter than usual.

Jordan is African American. She lives in a townhouse in suburban Des Moines with her son and her daughter-in-law, Milinda Andrews, who is her full-time caregiver.

Andrews was the first one to notice her mother-in-law was starting to have memory issues when she went to pick her up one day from the bus stop more than a decade ago.

“I drove up to pick her up and I saw her waiting, and she didn't recognize me right away. It was just seconds, but it was a blank couple seconds,” she said.

Jordan’s symptoms progressed from there. She started mixing up her medications. Her children started needing to go to her independent living facility more to check on her. Eventually, Jordan forgot to go to work.

Andrews said she insisted Jordan’s children take her to the University of Iowa for testing. There, she was diagnosed with Alzheimer’s.

“It was pretty much me at this point, kind of going out in front and taking charge and trying to find out those answers. What if I wasn't there?” She said. “And it goes back to, you know, different cultures, different families, how they handle things.”

An estimated 6.9 million Americans 65 and older are living with Alzheimer’s. That number is projected to increase to 12.7 million by 2050, according to the Alzheimer’s Association. There are also more treatments available that can help slow the progression of disease, but not everyone is reaping the benefits of this progress. Older Black and Latinos Midwesterners are often left out.

Cultural factors and lack of trust

Besides genetic predisposition, risk factors for getting Alzheimer’s include poor diet, lack of exercise, stress, diabetes and hypertension –– all factors that are more prevalent among Black and Latino people, who are two and one and a half times more likely to be diagnosed with Alzheimer's compared to white people.
 

It's also a common misconception for many Black and Hispanic families that dementia is a normal part of aging, which can delay a diagnosis, said Jimmy Reyes, the founder of MiSaludIowa, a non-profit organization that works with underserved communities.

“Many times people think, ‘Oh, you forgot about your keys, or you forgot...how to get to one location.’ And they don't see that as a warning sign that, if it's cumulative, and if it happens for so long, that could be perhaps a sign that there's something else going on,” he said.

Reyes has worked with other providers and community health workers, who are concerned about this racial disparity, to raise awareness through screening events.

One of those providers is Dr. Yogesh Shah, the medical director of the memory clinic at Broadlawns Medical Center in Des Moines.

Shah started doing informational sessions targeting Black and Latino communities about seven years ago, when a nurse pointed out to him that the memory clinic had far fewer patients of color compared to the health system’s overall patient population.

Some of the hesitation comes down to the systemic racism many minority groups face in the health care system, he said.

“There's less trust amongst African Americans to go to a medical system and go and talk about their health issues, especially mental health and dementia,” Shah said. “We are intentionally trying to go to the communities, rather than asking community members or patients to come to the clinic.”

Increasing early diagnosis and awareness

One of Shah’s main goals at these community events is to give people a brief screening test to find those with potential signs of the disease, so he can schedule them for additional testing.

“If we don't catch it early, that doesn't mean we are avoiding the issue, just the issue gets delayed,” he said, “and more Latino, more African Americans, tend to come to the emergency room in our hospitals with memory related issues...because they don't know what's going on.”
 

Early diagnosis has become increasingly important because recently approved drugs can slow the progression of Alzheimer’s if it’s caught in early stages.

However, experts say developing Alzheimer’s treatments that work on everyone hinges on getting more diverse groups of participants in drug trials.

Dr. John Morris, a professor of neurology at Washington University School of Medicine in St. Louis, said most Alzheimer’s drug trials are still disproportionately filled with white, college-educated participants.

“If we only study Alzheimer's disease in white people, we’ll only learn about Alzheimer's disease in white people,” he said.

For example, Morris said new Alzheimer’s drugs target amyloid plaque in the brain, which is believed to be one cause of the disease. But research has found Black individuals may be less likely to have amyloid plaque in the brain than white individuals for reasons that are unknown, making the drugs more likely to benefit white Alzheimer’s patients, he said.

“We have no real data to understand, for example, whether a drug exerts the same benefit in people identifying as Black as it does in people identifying as white, nor do we know whether there are differences in side effect profiles,” Morris said.

Side Effects Public Media is a health reporting collaboration based at WFYI in Indianapolis. We partner with NPR stations across the Midwest and surrounding areas — including KBIA and KCUR in Missouri, Iowa Public Radio, Ideastream in Ohio and WFPL in Kentucky.