Forget Me Not
Jessica Cantú has decorated her home with photographs of her father, Tomas, who received an Alzheimer’s diagnosis in 2016. Photo by Daisy Yuhas
The Rio Grande Valley is at the epicenter of an Alzheimer’s spike among Latinos. Yet Texas, with a $33 billion budget surplus, spends far less on this devastating form of dementia than other large states
Editor’s note: This project was originally published as a collaboration between Public Health Watch, a nonprofit investigative news organization based in Austin, and Univision.
A stretch of South Texas is struggling with a crisis many parts of the nation could someday face: Cases of Alzheimer’s disease and other dementias are climbing, and the state’s response has been uneven at best.
There is no cure for Alzheimer’s and scientists don’t fully understand what causes this devastating form of dementia. But research shows that poor access to health care, lack of education, air pollution and other social and environmental factors leave people more vulnerable to the disease.
All these factors converge in the four counties that make up the Rio Grande Valley, a mostly rural, majority-Latino region where the infrastructure, education and health care systems suffer from decades of neglect. Medicare data shows that people here who are 65 and older are almost twice as likely to be diagnosed with dementia as people in that age group in most other parts of the country, according to the Centers for Medicare & Medicaid Services. In Starr County alone, one of the nation’s poorest, nearly 1 in 4 seniors had Alzheimer’s or a related dementia in 2021. That compares to 1 in 14 nationwide.
When it comes to dementia among Mexican Americans, South Texas is “at the tip of the spear,” said neurologist Sudha Seshadri, who directs the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at UT Health San Antonio.
“In terms of the problems we’re going to face, other parts of the country are going to face it perhaps five to 10 years later,” Seshadri said.
About 400,000 Texans suffer from Alzheimer’s or related disorders and the state spends $5 million annually on dementia-specific programs. According to the Alzheimer’s Association, it spends $4.5 million a year to fund Alzheimer’s research through a consortium of in-state institutions. It also spends $500,000 through the Texas Department of State Health Services on an Alzheimer’s Disease Program, which runs a public education campaign, provides online lists of resources and collects data. None of that money goes to train Alzheimer’s caregivers or to provide other services that directly help patients and their families deal with the disease, according to Lara Anton, a DSHS spokesperson.
That spending puts Texas, which currently has a $32.7 billion budget surplus that lawmakers can allocate during the current legislative session, far behind the efforts of other large states.
In contrast, Florida has 580,000 patients and spends roughly $65 million per year on the disease, according to the Alzheimer’s Association, which tracks dementia-specific spending. New York, with 410,000 patients, spends $27.5 million. California, which is dealing with a severe budget deficit, will spend $10.5 million this fiscal year for 690,000 patients, down from $24.5 million allocated the previous year. Like Texas, these states invest in research and public education. But Florida and New York also invest heavily in dementia-specific services for Alzheimer’s patients and families, including training and respite programs for caregivers.
Seshadri works with neuroepidemiologist Gladys Maestre, a professor at the University of Texas Rio Grande Valley School of Medicine, to better understand Alzheimer’s and related conditions in Mexican American communities. In 2021, the National Institute on Aging appointed them co-directors of a new, federally funded Alzheimer’s disease research center that has facilities at both of their universities. Together, they are looking at why so many cases are concentrated in South Texas and what, if anything, can be done to bring down the numbers.
Answering those questions is increasingly important because age is the biggest risk factor for dementia — and seniors are the fastest-growing segment of the U.S. population. Alzheimer’s is already the most expensive disease in the country, accounting for $355 billion in health care spending. That doesn’t include the economic cost of unpaid caregiving — an estimated $271 billion last year — or the physical and emotional toll the disease takes on families and communities.
Research in Latino communities could unlock clues to these diseases that would help people of all ethnicities, said Sid O’Bryant, a neuroscientist at the University of North Texas Health Science Center. Latinos make up 19% of the U.S. population, and some studies show they have 1.5 times greater risk for dementia than white people without Hispanic ancestry. But so little research has been done within the Latino community that scientists don’t understand why.
“Our whole goal is to understand brain aging, Alzheimer’s and dementia among all communities,” said O’Bryant, whose own grandmother died from Alzheimer’s.
The Rio Grande Valley occupies more than 4,000 square miles along the southernmost stretch of Texas, where it is separated from Mexico by the Rio Grande.
PV Villaseñor-Sandell lives in Weslaco, about 7 miles north of the border. She lost her father, businessman Jose Villaseñor Sr., to dementia in 2011.
Her father liked to keep a little cash in a pocket or stashed in a safe spot. As his dementia advanced, he confused tissues with money. After he died, Villaseñor-Sandell found tissues hidden throughout the house. She treasures some as keepsakes.
More than a decade later, she works as a fundraiser for the South Texas chapter of the Alzheimer’s Association. She hasn’t forgotten how frightening it was to confront a condition that’s so poorly understood and is alarmed by the rates of dementia she sees in the Valley.
“What is happening to us in our community?” she asked. “Is it our diet? Is it where we live? Is it the grease … because, you know, who’s not making tortillas or carnitas?”
Lack of access to health care is likely one of the biggest contributors to dementia in the Valley because diabetes, heart disease and other health conditions increase the risk of Alzheimer’s and related dementias. The federal government classifies all four of the Valley’s counties as “medically underserved,” meaning they don’t have enough primary care doctors, dentists and other medical professionals. Finding specialists — including neurologists who can help diagnose and treat Alzheimer’s — is especially tough for rural residents.
Texas, one of 11 states that has refused to expand Medicaid, also has the highest percentage of uninsured people in the nation: 18%. The problem is acute in the Valley, where roughly half of adults under 65 live without health insurance, according to the Centers for Disease Control and Prevention.
A view of the Valley
In the Valley, the juxtaposition of affluence and poverty is visible everywhere.
On the U.S. side of the border, at the Valley’s easternmost end, is Brownsville, where Texas “snowbirds,” the annual visitors from the northern United States, pass through on their way to South Padre Island on the Gulf of Mexico. A few miles east of Brownsville is Elon Musk’s SpaceX facility, where one of the world’s richest men builds and launches rockets alongside one of the poorest medium-sized cities in the country.
In the middle of the Valley, in the town of Edinburg, a country club sits across from a juvenile detention center. Farther south, near the river, panels of border wall sprout up like jagged metal teeth within view of McMansions. Throughout the region are hundreds of informal settlements known as colonias, some without access to drinking water or sanitation.
Of the roughly 1.4 million people who live in the Valley’s four counties, more than 90% identify as Hispanic or Latino.
Starr County in South Texas may have the highest rate of Alzheimer’s and related dementias in the country, according to Medicare fee-for-service data. Photo by Daisy Yuhas
Noted researcher moves to Texas
Maestre moved to the Valley in 2016 to study healthy brain aging at UTRGV. She has a medical degree from her native Venezuela and a doctorate in neurobiology and behavior from Columbia University. She spent more than two decades studying Venezuelan communities hit hard by Alzheimer’s.
From the moment Maestre and her husband arrived in the Valley, it felt like home to them. But she said some public health workers and academics were skeptical about her growing interest in dementia among Latinos.
“People here told me that Mexican Americans don’t get Alzheimer’s,” she said.
Maestre began to wonder whether “a culture of denial” was keeping Latinos from admitting that they or their loved ones had the disease. When she met with families in nursing homes or gave talks at community meetings, people would pull her aside, whispering even, to say they were concerned about a parent or grandparent who had a memory problem. After the Pixar movie “Coco” was released, Maestre used it as a reference point to talk about dementia. The movie depicts an elderly Mexican woman named Coco whose memory is beginning to fade.
“I would ask, ‘Do you have a Coco at home?’ A lot of people say ‘yes,’” Maestre said. “Some people say ‘I am Coco!’”
Some of the people she met assumed that memory loss and confusion were normal aspects of aging. Some believed dementia strikes people who deserve it — that a person’s poor diet, heavy drinking or bad sleeping habits caught up with them. For some, acknowledging the disease was a source of shame. Others worried that talking about a relative’s dementia was tantamount to admitting their own vulnerability to the disease.
Two years after Maestre moved to Texas, she was named director of the newly created Alzheimer’s Disease Resource Center for Minority Aging Research at UTRGV. Three years later, she and Seshadri became collaborators.
Neuroepidemiologist Gladys Maestre’s research explores many factors linked to dementia that affect Hispanic families in the Rio Grande Valley. Photo by Victoria Bouloubasis
So far, Maestre suspects the occurrence of dementia in the Valley could be even higher than the Medicare data suggests. Residents who don’t visit doctors don’t show up in the data. Others may be too embarrassed to tell their doctors about memory problems.
But the number of cases could also be lower, Maestre says, because diagnosing dementia is so difficult. Depression, medication side effects, hearing loss and other conditions can produce changes that look like dementia. Misdiagnosis may be especially common among older patients with limited English skills because doctors can mistake incorrect responses to screening questions as signs of confusion or memory loss. And doctors can’t confirm an Alzheimer’s diagnosis without costly brain imaging or an invasive medical procedure.
Determining the true scope of dementia here could help answer questions about how Alzheimer’s and related diseases affect Hispanic communities more broadly. In the next 40 years, Latinos are on track to see the steepest increase in dementia diagnosis of any racial or ethnic group, yet they make up less than 5% of participants in clinical trials. Most previous studies of Alzheimer’s and related conditions recruited relatively affluent and educated white participants.
Limited resources for caregivers
Many families in the Valley care for older relatives in their home, and caring for a parent or relative with dementia presents unique challenges. Individuals diagnosed with dementia can become uncharacteristically aggressive or wander off. Caregivers are often unprepared for the way the disease transforms someone they have known all their life.
“You grieve twice,” said Jessica A. Cantú, who lost her father, Tomas, to dementia in 2021. While Tomas was alive and losing ground to the disease, she mourned. “I still grieve him every day,” she said.
Cantú’s parents moved in with her and her young son when Tomas’ disease worsened. They were better prepared than most families: Cantú is a nurse practitioner and her parents had health insurance. They managed to keep their promise to never put Tomas in a nursing home.
Still, Cantú — who now works at a dementia research center — is frustrated by how things played out for her family.
She first noticed changes in her father in 2007. Her dad started repeating himself during their daily calls. She took him to his primary care doctor, who insisted nothing was wrong.
In the years that followed, her family kept pushing his doctors — including a neurologist — to do a more comprehensive evaluation of his condition. The family was certain Tomas’ memory was deteriorating. But the doctors kept assuring them that he seemed fine.
It wasn’t until 2016 that he was finally diagnosed with Alzheimer’s.
By the spring of 2021, her father’s health had deteriorated so much that Cantú began looking for help caring for him. The Valley has many adult day care centers, but as far as she knew none offered care for dementia patients. When she looked for the Alzheimer’s Association’s South Texas chapter, she discovered its office was in San Antonio, nearly four hours away.
“Even as a nurse, I didn’t know where to find help,” Cantú said.
Jessica Cantú, a nurse practitioner, lost her father to Alzheimer’s disease in 2021. She now works as a nurse practitioner at El Faro Health & Therapeutics, a clinical research center for Alzheimer’s disease in Rio Grande City. Photo by Victoria Bouloubasis
Untangling the risk for dementia
Researchers hope their work in the Valley will give them a deeper understanding of the factors that increase the risk for Alzheimer’s and other dementias. Certain genes may contribute. But so can circumstances that people can change or avoid. Some studies suggest literacy alone may have a powerful protective effect.
Once those risk factors are identified, individuals — and the agencies and health care providers charged with protecting them — can take meaningful steps against the disease.
“That’s how we beat it,” said O’Bryant, the University of North Texas researcher. “A magic bullet doesn’t exist. We have to pull (dementia) apart, understand the nuances of it, find all the subgroups … then target every pathway.”
O’Bryant’s university, along with Seshadri’s and Maestre’s, is among 10 institutions that are part of the Texas Alzheimer’s Research and Care Consortium, which has supported dozens of projects. “Health disparities are, fundamentally, at their core, a failure of the scientific and medical community,” he said. “It’s our job to fix it — it’s not on the community.”
O’Bryant, who is non-Hispanic and white, grew up in southern Louisiana’s “Cancer Alley,” which has some of the highest cancer rates in the country. He and his dad took jobs in chemical plants because they needed the work.
In Texas, O’Bryant has found that Mexican American communities can show early signs of dementia almost a decade before non-Hispanic whites. He is investigating how two nongenetic factors may be involved: the overall socioeconomic status of a community and the prevalence of diabetes, hypertension and other health problems.
A recent report in The Lancet found that these and other “modifiable risk factors” help explain why marginalized communities and developing countries around the world are disproportionately burdened by dementia. The researchers calculated that in Latin America alone, 56% of dementia cases can be attributed to high blood pressure, obesity, hearing loss, depression, diabetes, physical inactivity, smoking, social isolation and lack of education. The researchers believe that such factors, experienced earlier in life, make people vulnerable to the disease later. For example, diabetes and poor heart health in midlife could lead to changes in the body — such as damaged blood vessels — that take a toll on the brain over time.
Considering the many dementia risk factors at play, she said, “It would be a miracle if we didn’t have Alzheimer’s.”
In 2020, the research and advocacy network Us Against Alzheimer’s compared U.S. counties with high and low Alzheimer’s rates for Black, Latino and non-Hispanic white communities. More than half of the 25 counties with the highest rates of dementia among Latinos were in Texas.
The report found that Latinos were more likely to have dementia if they lived in counties whose residents had poorer health, less education and fewer opportunities for exercise. Latinos were also at greater risk if they lived in rural counties.
To improve brain health for all residents, Maestre says, the Valley needs more public transportation, walkable neighborhoods and community centers for seniors. It also needs more public hospitals, clinics and a better educational system.
When she meets with area residents, she urges them to think critically about the choices that have shaped the Valley and, in turn, their own opportunities for healthy living.
“Who made these decisions? Once you realize that decisions are being made that are not in your favor and you accept that this can change, how can change happen?”
The rising burden of dementia-related disease weighs heavily on caregivers such as Lupita Casas. She has spent nearly half her life caring for her father, who has Alzheimer’s, and now her mother, who recently developed dementia. Photo by Anna Clare Spelman
Raising the bar for Texas
The improvements Maestre wants are expensive, but so is the cost of treating dementia. By 2050, U.S. health-care spending for Alzheimer’s disease alone could rise to $1.1 trillion.
As part of its effort to prepare the country for the coming wave of dementia cases, the Alzheimer’s Association has developed policy recommendations–including specific budget goals–for each state.
In Texas, it is urging lawmakers to increase funding for the Alzheimer’s Disease Program from $500,000 to $5 million annually. That could allow the state to hire someone to coordinate its dementia efforts, offer training to caregivers and health care providers, and expand its services in other areas.
‘Just compare Texas to other states. We can and should do a lot better.’
That funding is still far less than what other large states spend, but Melissa Sanchez, the association’s Texas public policy director, said Texas can’t do more until it prepares its government agencies to tackle dementia on a larger scale. “We can’t roll out an even bigger program without that infrastructure,” she said.
This spending boost has bipartisan support, Sanchez said. She expects the increase to be introduced in a budget rider in the legislative session that began in January.
State Rep. Giovanni Capriglione, a six-term Republican from Southlake, near Fort Worth, said he supports the increase, especially in light of the state’s budget surplus. “We need to get our state to a higher level," he said. “Just compare Texas to other states. We can and should do a lot better.”
Capriglione chaired the health and human services subcommittee of the Texas House Appropriations Committee in 2021 and could hold the same influential position during the current legislative session. He has long been interested in dementia and its impact.
In 2019, he authored a bill that requires additional dementia training for certain state employees who work with elders, and in 2021 he led an effort that protected the $500,000 allocated to the Alzheimer’s Disease Program from pandemic budget cuts. This year he plans to introduce two bills that would tighten standards for those who care for elders with dementia at assisted-living and memory-care facilities.
But Capriglione does not support Medicaid expansion, which researchers at Texas A&M estimate would give at least 80,000 Valley residents access to the care they need to reduce their risk of dementia.
In 2021, he led Republican opposition to a bill by then-state Rep. Garnet Coleman, D-Houston, that would have created a Texas-style approach to expansion, even though the federal government would have paid 90% of the cost. Only one Republican, Rep. Lyle Larson of San Antonio, voted in favor of the measure.
Capriglione said the legislature is working on other ways to improve Texans’ access to health care, including investing in rural hospitals, offering incentives to bring more doctors into poor and rural areas, and taking steps to reduce the cost of private insurance.
In the Rio Grande Valley, meanwhile, people are struggling to figure out the intricacies of the disease and caregiving on their own.
“I hear over and over, ‘Oh my family member’s just getting older, they’re just forgetting,’ “ said Villaseñor-Sandell, the Weslaco woman who lost her father to dementia. “But that’s not what it is.”
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Daisy Yuhas is a science journalist and editor based in Austin, Texas. She is an editor for Scientific American’s Mind Matters column, which explores insights from brain and behavioral science. Previously, she has served as features editor for SAPIENS magazine, a columnist for The Hechinger Report, and an associate editor at Scientific American, where she edited stories for Scientific American MIND. Daisy has written for multiple publications, including The New York Times for Kids, Audubon magazine, NBC News, and Newsweek.