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Stigma and language barriers complicate treating Hispanics with Alzheimer’s disease

Balloons and pamphlets at El Faro Health and Therapeutics, an Alzheimer's research facility, during a ribbon-cutting ceremony in Rio Grande City on Nov. 13, 2021
Brenda Bazán for The Texas Tribune
Balloons and pamphlets at El Faro Health and Therapeutics, an Alzheimer's research facility, during a ribbon-cutting ceremony in Rio Grande City on Nov. 13, 2021

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Hispanics are almost twice as likely to be diagnosed with Alzheimer’s disease than white Americans, according to the Alzheimer’s Association. But experts say that cultural factors likely mean that the disease is even more prevalent among Hispanics than these numbers suggest.

Border counties in Texas have some of the highest Alzheimer’s diagnosis rates in the nation, according to data released by the Alzheimer’s Association, with rates ranging from 13% to 18% of people aged 65 and over. Alzheimer’s disease, a type of dementia, impacts an individual’s memory, thinking and behavior. The disease affects not only patients, but caregivers who are often family members.

Hispanic families often deny the possibility of Alzheimer’s for fear of embarrassing relatives, said Joe Arciniega, who serves on the National Board of Directors of the Alzheimer’s Association. That fear makes the disease difficult to diagnose and makes understanding and treating it harder.

“We are protective of our elderly,” said Arciniega, of Laredo. “The family builds a cocoon around that person and then that person eventually dies. It’s a mistake for us.”

Cultural barriers

In the desire to shield older family members from the stigma associated with Alzheimer’s, Hispanic families tend to write off dementia as normal aging, said Arciniega. This stigma is compounded by a gap in Alzheimer’s education. He said more programs in higher education need to focus on dementia care and treatment and there needs to be more outreach to families.

Gladys Maestre is a neuroscientist and professor at University of Texas Rio Grande Valley. She moved to the area in 2016, continuing her decades of research into Alzheimer’s. She said she was looking for somewhere that her skills would be useful, so she chose Brownsville, where she found cultural similarities to her home country Venezuela.

“People who actually go to the doctor and people who actually get the diagnosis might be very different from the people who just reside in the community,” said Maestre.

According to Maestre, the Hispanic community’s values can interfere with the diagnosis and care of patients. For example, a friend of Maestre expressed concerns after her mother developed the disease. She didn’t want people to think she had the disease because it can be genetic.

Alzheimer’s Association Executive Director Greg Scuito said admitting that there might be a problem proves to be difficult for Hispanics.

“We were taught to respect our elders,” said Sciuto. “I think that does play a role, but also that stigma of a diagnosis, we really have to work to break that down so that people feel comfortable coming forward.”

Language can also prevent a family from seeking diagnosis.

Speaking English as a second language is already a challenge, but adding on medical terminology is difficult for some Hispanic families, said Gloria Martinez, a professor of Latino studies at Texas State University.

“Language really has a huge impact on being diagnosed in Hispanics. Medical language … makes it more difficult for Hispanic families to get a diagnosis or just to communicate what their experiences are,” Martinez said.

Families and caregivers need support to help them understand what the patient needs, said Martinez. Sometimes important aspects of care can literally be lost in translation, she said.

Lack of representation in clinical trials

One consequence of Hispanics’ cultural views is that they aren’t adequately represented in clinical trials, according to Arciniega. According to the Alzheimer’s Association, lack of representation in clinical trials limits medical understandings of risk factors and interventions that are specific to non-White patients who bear the greatest risk from the disease.

Hispanics made up, on average, 15% of the participants in Alzheimer’s studies submitted to ClinicalTrials.gov that have been completed since 2010 and include locations in Texas. Hispanic representation in these trials, which focus on drug development but can also include education and support for caregivers, ranged from 1.4% to 61.1%. In 2022, Texas was 40.2% Hispanic.

Notably, a study completed in 2011 by the Veterans Affairs Office of Research and Development considered services to improve the well-being of dementia patients and caregivers. Two of study’s six locations were in Texas, and 2.8% of over 900 participants were Hispanic.

A more recent study, completed in 2021 by researchers at the University of Texas Health Science Center at San Antonio, evaluated an education program designed to support family caregivers of Alzheimer’s patients. Hispanics made up over a quarter of the pilot study’s 35 participants.

Christopher Johnson agrees the lack of Hispanic representation in clinical trials is a problem. Johnson is a clinical professor of sociology at Texas State University where he helped develop the master’s program in dementia and aging studies. He said Hispanic families are less likely to place their loved ones in long-term care, which can be a path to participating in clinical trials.

“You have language barriers. You have cultural barriers” Johnson said.

According to Johnson, the solution to getting more Hispanic patients in clinical trials is outreach.

“It’s finding ways to reach Latino families,” Johnson said.

Supporting families and caregivers

Johnson said that caregivers are empowered when they’re knowledgeable about Alzheimer’s and understand how to talk with patients about the disease. Understanding the disease and patients’ experience helps remove the stigma.

“Latinos help the elders, there’s a lot of family social support,” Martinez, the Texas State professor, said. “But we know that the caregivers experience a lot of stress.”

Adriana Nunemaker, the executive director of the University of Texas Education and Research Center at Laredo said she knows what it’s like to have a family member diagnosed with Alzheimer’s after the loss of her father-in-law. She said it can be difficult to come to terms with. Being informed and working with educated physicians that care and support the patient helps families understand the disease.

“There are people that don’t want to know,” Nunemaker said. “They don’t want to talk about it because then it makes it real.”

Gabriella Alcorta is a journalism major at Texas State University and an intern for Texas Community Health News, a collaboration between the School of Journalism and Mass Communication and the university's Translational Health Research Center. TCHN stories, reports and data visualizations are provided free to Texas newsrooms.

Disclosure: University of Texas Health Science Center at San Antonio has been a financial supporter of The Texas Tribune, a nonprofit, nonpartisan news organization that is funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in the Tribune's journalism. Find a complete list of them here.

Gabriella Alcorta-Solorio is a journalism major at Texas State University, minoring in women’s studies. She has previously worked as a photojournalist with The Ranger and has reported on Alzheimer’s and dementia using public health data. She plans to stay in South Texas after graduation to build a career in journalism focused on women’s rights and human rights.