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Hispanics are nearly twice as likely to be diagnosed with Alzheimer’s disease than white Americans, according to the Alzheimer’s Association. But experts say cultural factors likely mean the disease is more prevalent among Hispanics than these numbers indicate.
Border counties in Texas have some of the highest rates of Alzheimer’s diagnoses in the country, according to data from the Alzheimer’s Association, with rates ranging from 13% to 18% of people ages 65 and older. Alzheimer’s disease, a type of dementia, affects a person’s memory, thinking, and behavior. The disease affects not only patients but also caregivers who are often family members.
Hispanic families often deny the possibility of Alzheimer’s for fear of embarrassing their relatives, said Joe Arciniega, who serves on the National Board of Directors for the Alzheimer’s Association. This fear makes the disease difficult to diagnose and more difficult to understand and treat.
“We are protecting our seniors,” said Arciniega, of Laredo. “The family builds a cocoon around that person and then that person eventually dies. It’s wrong for us.”
Cultural barriers
In a desire to protect older family members from the stigma associated with Alzheimer’s, Hispanic families tend to write off dementia as normal aging, Arciniega said. This stigma is exacerbated by a gap in education about Alzheimer’s disease. 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 Meister is a neuroscientist and professor at the University of Texas Rio Grande Valley. She moved to the area in 2016, continuing decades of research into Alzheimer’s disease. She said she was looking for a place where her skills would be useful, so she chose Brownsville, where she found cultural similarities to her native Venezuela.
“The people who actually go to the doctor and the people who actually get a diagnosis may be very different from people who stay in the community,” Meister said.
According to Meister, the values of Spanish society can interfere with diagnosis and care of patients. For example, Meister’s friend expressed her concerns after her mother became ill. She didn’t want people to think she had the disease because it might be hereditary.
Acknowledging there may be a problem is difficult for Hispanics, said Greg Squito, executive director of the Alzheimer’s Association.
“We learned to respect our elders,” Sciuto said. “I think that plays a role, but also the stigma associated with the diagnosis, we really have to work on breaking that down so people feel comfortable coming forward.”
Language can also prevent a family from seeking a diagnosis.
Speaking English as a second language is already a challenge, but adding medical terminology is difficult for some Hispanic families, said Gloria Martinez, a professor of Latino studies at Texas State University.
“Language has a really big impact on diagnosis in Hispanics. Medical language… makes it more difficult for Hispanic families to get a diagnosis or just communicate their experiences,” Martinez said.
Families and caregivers need support to help them understand what the patient needs, Martinez said. Sometimes important aspects of care can actually get lost in translation, she said.
Lack of representation in clinical trials
One consequence of Hispanics’ cultural views is that they are underrepresented in clinical trials, according to Arciniega. According to the Alzheimer’s Association, a lack of representation in clinical trials limits medical understanding of risk factors and interventions for patients of color who bear the greatest risk of the disease.
Hispanics made up, on average, 15% of participants in Alzheimer’s disease studies submitted to ClinicalTrials.gov that were completed since 2010 and include sites in Texas. Hispanic representation in these trials, which focus on drug development but can also include education and caregiver support, ranged from 1.4% to 61.1%. In 2022, 40.2% of the population in Texas was Hispanic.
Notably, a study completed by the Veterans Affairs Office of Research and Development in 2011 looked at services to improve the well-being of dementia patients and caregivers. Two of the six study sites were in Texas, and 2.8% of the more than 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 educational program designed to support family caregivers of Alzheimer’s patients. Latinos make up more than a quarter of the 35 participants in the pilot study.
Christopher Johnson agrees that the lack of Hispanic representation in clinical trials is a problem. Johnson is a professor of clinical sociology at Texas State University where he helped develop the master’s program in dementia and aging studies. Hispanic families are less likely to place their loved ones in long-term care, which could be a path to participation in clinical trials, he said.
“You have language barriers. You have cultural barriers,” Johnson said.
According to Johnson, the solution to getting more Hispanic patients into clinical trials is outreach.
“It’s finding ways to reach Latino families,” Johnson said.
Supporting families and carers
Caregivers are empowered when they are aware of Alzheimer’s disease and understand how to talk to patients about the disease, Johnson said. Understanding the disease and patients’ experience helps remove stigma.
“Latinos help the elderly, and there is a lot of family social support,” said Martinez, the Texas State professor. “But we know that caregivers experience a lot of stress.”
Adriana Nunemaker, executive director of the Center for Education and Research at the University of Texas at Laredo, said she knows what it means to have a family member diagnosed with Alzheimer’s disease after losing her father-in-law. She said it can be difficult to come to terms with. Knowing and working with educated doctors who care for and support the patient helps families understand the disease.
“There are people who don’t want to know,” Nunemaker said. “They don’t want to talk about it because it will make it real.”
Gabriela Alcorta is a journalism major at Texas State University and an intern at Texas Community Health News, a collaboration between the University’s College of Journalism and Mass Communication and the University’s Center for Translational Health Research. TCHN stories, reporting and data visualizations are provided free to Texas newsrooms.
Disclosure: The University of Texas Health Science Center at San Antonio has been a financial supporter of The Texas Tribune, a nonpartisan, nonprofit news organization funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in Tribune journalism. Find a full list of them here.
Alzheimer’s disease is a debilitating condition that affects millions of individuals around the world, and Hispanics are particularly at risk. Unfortunately, the existing stigma and language barriers within the Hispanic community can complicate the treatment and management of Alzheimer’s disease in this population. The cultural beliefs surrounding mental illness and the lack of access to Spanish language resources can prevent individuals and their families from seeking proper care and support. It is crucial to address these challenges in order to improve the quality of life for Hispanics living with Alzheimer’s disease.