Dementia affecting younger persons strikes Hispanics more than previously thought, study shows

A form of dementia that strikes younger people is more common in Hispanics than previously thought, according to a new study led by researchers at UT Health San Antonio, the academic health center of The University of Texas at San Antonio.

A group of rare, progressive brain diseases called frontotemporal dementia (FTD) damages the frontal and temporal lobes of the brain, the regions behind the temples and above the ears. Unlike Alzheimer’s disease, it typically afflicts younger individuals—usually between the ages of 45 and 64—and leads to severe early changes in personality, behavior and language rather than memory loss.

While Hispanic populations generally experience higher dementia rates, they have remained underrepresented in frontotemporal dementia research. But the new study on FTD examined a South Texas Hispanic cohort and compared results with national data, finding that Hispanic participants presented with more movement-related symptoms and advanced cognitive impairment at diagnosis than non-Hispanic whites.

The diagnostic delays averaged four years from symptom onset. The researchers also concluded that educational disparities significantly contributed to health care access differences.

“The findings underscore diagnostic severity and systemic barriers faced by Hispanic populations with FTD, emphasizing the need for culturally sensitive diagnostic tools and interventions for equitable dementia care,” said A. Campbell Sullivan, PsyD, ABPP-CN, clinical associate professor of neurology with the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at UT Health San Antonio.

Sullivan said the study is long overdue to dispel longstanding assumptions that FTD doesn’t occur in Hispanics and that significant barriers have delayed timely and accurate diagnosis. Those assumptions themselves have contributed to the underrecognition of FTD in those populations, she said.

Sullivan is senior author of the new study titled, “Frontotemporal dementia in Hispanic populations: Regional and national comparisons,” published July 23 by the journal Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring. Other authors include first author Shannon B. Lavigne, Ph.D., LP, who was a fellow at UT Health San Antonio at the start of the study and is now an assistant professor and clinical neuropsychologist at the University of Kansas School of Medicine-Wichita, plus several researchers with the Biggs Institute.

The FTD Center at the Biggs Institute, directed by Sullivan and Alicia Parker, MD, an assistant professor, is working to change figures showing that Hispanic FTD patients are not well represented in national cohorts. South Texas is well positioned for that effort and for the study of neurodegenerative diseases.

Leading cause of dementia under 65

According to the new study’s background, frontotemporal dementia is a constellation of neurodegenerative disorders affecting personality and behavior, speech and language, and movement. Onset typically occurs in midlife, and it is the leading cause of dementia for those under age 65.

The behavioral variant (bvFTD) accounts for nearly 50% of cases and is characterized by coarsening of behavior, compromised judgment and executive dysfunction. Two language variants have been identified: Nonfluent/agrammatic primary progressive aphasia (nfvPPA) presents with labored speech production and agrammatism or apraxia of speech, while semantic variant primary progressive aphasia (svPPA) is characterized by fluent, empty speech and notable loss of semantic relationships.

In addition to the core behavioral and language presentations, motor phenotypes such as progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) are increasingly recognized within the FTD spectrum, with overlapping clinical and pathological features. There is considerable heterogeneity within and between clinical FTD syndromes.

While there are active efforts to improve diversity inclusion internationally, Hispanic individuals with FTD remain underrepresented in research, especially in the U.S.

In this new study, however, participants diagnosed with FTD were included from:

• The FTD Center at the Biggs Institute, the South Texas Alzheimer’s Disease Research Center (STAC) and a cohort of the ALLFTD (Advancing Research and Treatment for Frontotemporal Lobar Degeneration/Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects), housed locally at the Biggs Institute and led by Sullivan, with a total of 17 Hispanic and 22 non-Hispanic white participants
• The National Alzheimer’s Coordinating Center (NACC) dataset, with 24 Hispanic and 407 non-Hispanic white participants

Clinical, neuroimaging and neuropsychological data were harmonized for cross-cohort comparisons. Expanding to include data from NACC allowed for more robust comparative analyses that assessed potential differences between the Texas-based population and the broader national FTD cohort.

Hispanics and movement-related symptoms

The results, through neurological examination, revealed that Hispanics were more likely to exhibit movement-related symptoms, including dystonia, apraxia and postural instability. Non-Hispanic white individuals were more likely to exhibit behavioral changes, including loss of empathy. There were no significant differences in neuropsychological results.

Several recurring barriers to timely diagnosis were identified with the local STAC/ALLFTD Hispanic cohort. These included late presentation to specialty care, often after several years of progressive symptoms; initial misattribution of symptoms to psychiatric conditions; and underrecognition of neurodegenerative syndromes despite functional decline.

Patients were frequently referred to neurology only after significant impairments in communication, behavior or cognition had developed. These patterns underscore systemic challenges in identifying and diagnosing neurodegenerative diseases, including limited access to appropriate specialists, potential biases in clinical interpretation and diagnosis, and cultural and linguistic factors influencing help-seeking behaviors.

The researchers concluded that the findings underscore the need for future studies involving larger, well-characterized cohorts to more accurately capture symptom presentation, disease subtype distribution and diagnostic timing across diverse ethnic groups.

Longitudinal follow-up, they said, will be critical to track disease progression, while biomarker validation will help determine whether observed differences reflect true phenotypic variation or are shaped by sociocultural and health care-related factors.

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Gaby Clark

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