Frontotemporal dementia in Hispanics appears underrecognized, study finds

Frontotemporal dementia Hispanics research has likely missed more cases than previously recognized, according to a UT Health San Antonio-led study that compared South Texas patients with national data. The findings matter because frontotemporal dementia, or FTD, often develops before age 65 and can be mistaken for psychiatric or other conditions before patients reach specialty care.

The study, published July 23 in Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring, examined Hispanic and non-Hispanic white patients with FTD in a regional South Texas cohort and in a national dataset. UT Health San Antonio said Hispanic participants were more likely to arrive at diagnosis with movement-related symptoms and more advanced cognitive impairment than non-Hispanic white participants.

What is frontotemporal dementia?

Frontotemporal dementia is a group of progressive brain diseases that damage the frontal and temporal lobes, areas linked to behavior, personality, language and movement, according to the study background. Unlike Alzheimer's disease, UT Health San Antonio said FTD commonly affects people ages 45 to 64 and often begins with changes in conduct, judgment or speech rather than memory loss.

The study described FTD as the leading cause of dementia in people younger than 65. It also noted several forms of the disease, including a behavioral variant, two language variants and movement-related forms such as progressive supranuclear palsy and corticobasal degeneration.

What did the study compare?

Researchers included patients from the FTD Center at the Glenn Biggs Institute for Alzheimer's and Neurodegenerative Diseases, the South Texas Alzheimer's Disease Research Center and a local ALLFTD cohort. That regional group included 17 Hispanic participants and 22 non-Hispanic white participants, according to UT Health San Antonio.

The team also used the National Alzheimer's Coordinating Center dataset, which included 24 Hispanic participants and 407 non-Hispanic white participants. The researchers harmonized clinical, neuroimaging and neuropsychological data so they could compare the South Texas group with the broader national FTD cohort.

Shannon B. Lavigne, now an assistant professor and clinical neuropsychologist at the University of Kansas School of Medicine-Wichita, was first author of the paper. A. Campbell Sullivan, a clinical associate professor of neurology at UT Health San Antonio's Biggs Institute, was senior author.

How did symptoms differ by group?

Neurological exams showed Hispanic participants were more likely to have movement-related symptoms, including dystonia, apraxia and postural instability, according to the researchers. Non-Hispanic white participants were more likely to show behavioral changes, including loss of empathy.

The researchers reported no significant differences in neuropsychological test results. They also found diagnostic delays averaging four years from the start of symptoms, and concluded that differences in education contributed to gaps in access to care.

• Hispanic participants were more likely to show movement symptoms at diagnosis.
• Non-Hispanic white participants were more likely to show behavioral symptoms.
• Average time from symptom onset to diagnosis was four years.
• Educational disparities were linked to differences in health care access.

Why were diagnoses delayed?

In the local Hispanic cohort, the researchers identified several patterns that slowed diagnosis. UT Health San Antonio said patients often reached specialty care only after years of worsening symptoms, and early symptoms were sometimes attributed to psychiatric conditions.

The study also pointed to underrecognition of neurodegenerative disease despite functional decline. Researchers said patients were often sent to neurology after major communication, behavior or cognitive problems had already developed.

Sullivan said the results show the need for culturally sensitive diagnostic tools and care approaches for Hispanic patients with FTD. She also said the work challenges assumptions that FTD is uncommon in Hispanic populations, an idea she said has contributed to missed or delayed recognition.

The researchers said larger and better-characterized cohorts are needed to clarify symptom patterns, disease subtype distribution and timing of diagnosis across ethnic groups. They also called for long-term follow-up and biomarker validation to determine whether observed differences reflect disease biology, social and cultural factors, health care access, or a combination of those influences.

This story draws on original reporting from Medical Xpress.