(NEW YORK) — Evelin Miranda first noticed something was off with her husband, Eddie, about 10 years ago, when he started picking her up from work late. Then, her son Miguel told her Eddie hadn’t been paying bills on time.
“Things just weren’t getting better,” she told ABC News. “I was saying to myself, well, there’s something wrong.”
Eddie was eventually diagnosed with Alzheimer’s disease in 2018. He lives at home, and Evelin is his full-time caretaker. She has a nursing background, and was familiar with Alzheimer’s disease. But this was different.
“You never expect it in your own home, with your own loved one, your partner, that you share your whole self to,” she said.
The Mirandas’ story is featured on “Our America: Unforgettable,” an hour-long special produced by ABC Owned Television Stations in partnership with ABC News that takes a look at the alarming data of Alzheimer’s disease through a Hispanic and Latino lens.
Families like the Miranda’s are more likely than most to be struggling with the devastation of Alzheimer’s disease. Older Hispanic people have a higher risk of developing Alzheimer’s disease and other dementias than older white people — a 1.5 times higher risk, according to the Alzheimer’s Association. They’re also expected to have the steepest increases in rates of disease over the next few decades.
But they’re also less likely to benefit from research around the disease. Hispanic and Latino people tend to be diagnosed later in the course of the illness and are also less likely to participate in clinical trials investigating the disease.
Those are two key challenges in the efforts to reduce the burdens of Alzheimer’s disease, experts say — and make it less likely the group will be able to benefit from treatment innovations.
“We need action now,” Christian Salazar, a research scientist at the UC Irvine Institute for Memory Impairments and Neurological Disorders, told ABC News. “We need to address these disparities now.”
More disease, less diagnosis
There’s no clear answer as to why Hispanics are more at risk of Alzheimer’s disease, Dr. Zaldy Tan from Cedars Sinai told ABC News. It’s likely a combination of factors, including socioeconomic factors like income level, and rates of underlying illnesses like high blood pressure.
“I tell my patients that controlling diabetes and high blood pressure is important,” Tan said.
Even though older Hispanics are 1.5 times more likely to get Alzheimer’s disease or other dementias than older white people, the disease is underdiagnosed in the community — they’re only 18% more likely to be diagnosed with the disease, according to the Alzheimer’s Association. And when they are diagnosed, they’re often diagnosed later in the course of the disease, according to Maria Aranda, executive director of the USC Edward R. Roybal Institute on Aging.
“They do so when it’s later in the trajectory of the disorder,” Aranda told ABC News. “And as a result, they could be exhibiting higher levels of behavioral and psychological symptoms.”
The disease can be hard to detect, Tan said.
“It can take the form of forgetting to pick up something from the grocery, it could take the form of forgetting to pick up your kids after school,” he said. “It’s very subtle in the beginning.”
But Latinos also tend to see some memory loss as a normal sign of aging, which it is not, Tan said. So they put off going to see a doctor.
“There is that reluctance to come earlier for an evaluation,” he said.
Diagnosis can also be difficult for people who speak limited English or speak English as a second language, because it’s harder to communicate with healthcare providers, said Carmen Carrión, a neuropsychologist at the Yale School of Medicine.
“There’s also these cultural differences,” she told ABC News. “That creates a disconnect and can sometimes make it very difficult to communicate the difficulties that you’re having.”
Carrión is bilingual and conducts patient evaluations in Spanish, but few physicians in the United States speak Spanish.
“It’s important to have physicians that speak Spanish that can explain to the Latino families, because a lot of them, they don’t understand where Alzheimer’s is coming from,” Evelin Miranda said.
Getting diagnosed — and getting diagnosed early — is important to help people and their families prepare for the progression of disease, maximize quality of life, and make plans for caregiving, experts say. It also makes it more likely someone would be able to get access to new drugs that may be able to slow the progression of disease. The two drugs, Aducanumab and Lecanemab, are only approved for the early stages of the disease.
The importance of research
There’s a complicated tangle of issues around Alzheimer’s disease in the Hispanic and Latino communities. Researchers and doctors are making strides in understanding how to address them — but in order to push forward, they need to engage with people in that community.
“The only way that we’re really going to understand how or why it manifests differently among diverse communities is by having these diverse communities, Latinos, Hispanics, participating in research and clinical trials,” Carrión said.
But Hispanics are less likely to participate in clinical trials, research shows.
“Clinical trials come in two different types. You have pharmacological trials — those that are geared towards drugs — and those that are not geared towards drugs, the lifestyle interventions,” Salazar said. “We need Hispanic participation in both of these types of clinical trials, because without them, we won’t know how to intervene.”
It’s particularly important with new drugs on the horizon. Aducanumab and Lecanemab are the first drugs that may slow the disease down, not just treat symptoms, and there are other investigational drugs in the development pipeline.
“We are at the cusp of a revolution in understanding better treatments for Alzheimer’s disease,” Salazar said.
But in order for all groups to get the benefits of those drugs, researchers have to pursue strategies to encourage all groups to sign up.
“We have to do a better job getting the message out there,” Carrion said.
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