Around 2010, a military doctor told 30-year U.S. Coast Guard veteran George Becerra that he likely had Post-Traumatic Stress Disorder and a “deficiency” in the frontal lobe of his brain — something they picked up through a behavioral exam and MRI scan.
George and his wife Tammy Becerra, both in their 40s at the time, didn’t know what to make of the deficiency. Neither did the doctor, it seemed, the couple recalled.
But as time went on, Tammy Becerra noticed subtle changes in her husband’s temperament and cognition. He started getting inpatient, irritated by little things and even aggressive at times. It was unusual for George, who usually had an unshakable easygoing attitude and friendliness about him.
His memory also started to slip.
“We had to go to the doctors at the military base first before we came here, and I’m trying to tell them what’s going on, and I felt like I was getting brushed off,” Tammy said. “I said, ‘My husband’s never been like this before, and I am concerned.’”
In 2024, the family finally got an answer, one that was both relieving and devastating. Doctors at UT Health San Antonio diagnosed George with frontotemporal dementia (FTD), a rare neurodegenerative disease that begins decades earlier than other brain diseases.
FTD is less understood compared to more common forms of dementia like Alzheimer’s Disease, according to A. Campbell Sullivan, a neuropsychologist at the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at UT Health San Antonio.
Sullivan was the senior author on a study published in July, which George participated in, examining FTD in the South Texas Hispanic population compared to white patients.
The study found that this type of dementia goes undetected for longer in Hispanic patients, who present with more advanced disease at the time of diagnosis.
Why this type of dementia is often missed
FTD is one form of early-onset dementia, defined as occurring before age 65. But the disease is quite rare.
Alzheimer’s, the most common form of dementia, affects roughly 7.4 million Americans and accounts for somewhere between 60% and 80% of all cases of dementia, an umbrella term for conditions that degrade mental function over time.
The Alzheimer’s Association estimates that somewhere between 50,000 and 60,000 Americans have FTD, but these are rough estimates — in part because the disease is often underdiagnosed and misdiagnosed.
The onset of symptoms also looks different than the typical memory loss or confusion typically associated with Alzheimer’s. Instead, FTD might look like unusual changes in personality, judgement, eating habits, increased apathy or issues with language processing and speaking. One 2020 paper found as many as half of FTD patients are initially misdiagnosed with a mental health disorder.
“A lot of my patients are in their late 40s to mid 50s when symptoms first start,” Sullivan said. “Symptoms can be misattributed to things like depression or a midlife crisis, or just stress at work.”
FTD also comes in different variants. The most common is behavioral FTD, accounting for half of diagnoses, affecting the frontal lobe of the brain and resulting in changes in personality, judgement, motivation, insight and multitasking.
Another kind of FTD known as primary progressive aphasia affects language more. This can show up in different ways as well, with some people losing the ability to attach meaning to words and others with pronunciation, for example.
Variants of FTD that primarily affect movement and motor functions, often resembling Parkinson’s disease, include corticobasal syndrome and progressive supranuclear palsy.
Symptoms are often overlapping, and researchers are finding that the disease is more complex than once thought, Sullivan said.
A dispelled myth
According to the UT Health study’s findings, published on July 23 in the Journal of the Alzheimer’s Association, not only do Hispanic people with FTD go longer without a diagnosis, researchers also found that lower educational levels correlated significantly with delays in getting diagnosed.
Researchers surmise that this disparity “may reflect longstanding barriers to early detection and access to specialized care” in the Hispanic population.
The study included a local sample of 17 Hispanic and 22 non-Hispanic white patients, who were then compared to a national dataset. The main goal of the study was to dispel a misconception in the research community that the disease wasn’t present in the Hispanic population, Sullivan said.
“I’ve been at meetings … national meetings where they say, ‘[FTD] doesn’t occur enough in the Hispanic population, so let’s not even worry about it,’” Sullivan said. “This assumption is what prompted us to publish this and get that data out there.”
Hispanic people have historically been underrepresented in dementia research trials and population studies, a gap that researchers at the Biggs Institute aim to fill.
The study wasn’t geared toward looking at whether FTD shows up more in Hispanic patients than other demographics — like with Alzheimer’s, a disease that Hispanic people are 1.5 times more likely to develop compared to non-Hispanic white people.
Hispanic patients in Sullivan’s cohort presented with a higher frequency of movement-related symptoms compared to the national data set. She said that it was too early to make any strong conclusions from this finding without follow-up research.
“The central finding is that Hispanic patients were clearly present within the FTD spectrum,” Sullivan said. “But they reached our specialty care with more advanced disease and a somewhat different clinical profile.”
The big question
George’s condition has progressed since his diagnosis. What started as minor irritation and impatience has been accompanied by worsening memory loss, emotional regulation issues, difficulty swallowing and shaky hands.
Some things have helped. George, now 63, is on a mood stabilizer and antidepressant. Having structure in his day, resembling the rigidity of the military, has also helped.
But things have not been easy. Tammy, George’s primary caretaker and wife of 33 years, is fighting her own health battle. She was diagnosed with chronic leukemia in 2020. One of their children, a registered nurse, has moved in with them to help.
“The hardest thing for our children and I is, as this is progressing, you’re used to seeing him a certain way,” Tammy said.
The biggest unknown that the Becerras would like answered is what contributed to George’s disease. Was it the ships that he worked on for three decades, and the toxins he was exposed to through his military service? Was it simply genetics? Did his diet play a role?
Researchers like Sullivan have some of the same questions. The factors that contribute to FTD are less understood compared to Alzheimer’s, which scientists have increasingly uncovered as a mixture of genetic, lifestyle and behavioral factors making up a complex profile of risk and probability.
George agreed to donate his brain to the Biggs Institute for study when he passes. He hopes that his donation and continued participation in research trials will help scientists understand how the disease can be prevented, and eventually treated.
“It may not answer my questions,” he said, “but somewhere down the line, I’m hoping that we did some good.”
