Frontotemporal Dementia: Language and Behavior Gone Awry

Frontotemporal dementia (FTD) is a group of brain disorders you may not have heard of and may never encounter firsthand.

So, why pay attention to this “rare“ dementia?

Because for those affected—and the people who love them—FTD upends daily life, relationships, and identities in profound and often bewildering ways.

Raising awareness matters. It may lead to earlier recognition, better support, and more effective treatments. Dementia is not one-size-fits-all, and understanding conditions like FTD moves us toward care that fits the person.

What Is FTD?

FTD primarily affects the brain’s frontal and temporal lobes—regions involved in decision-making, behavior, and language. Other areas may be involved, but the name reflects where the damage begins. People with FTD may become socially inappropriate, show reduced empathy, repeat behaviors, or struggle to follow or join conversations.

Unlike most dementias, where risk increases in late life, FTD is one of the leading causes of dementia under age 65, affecting about seven or eight people per 100,000 with dementia who are under the age of 65.

You may have heard of FTD in connection with Bruce Willis, the star of films including Die Hard. He retired from acting in his mid-60s after developing language difficulties initially described as aphasia. His family later shared that he had been diagnosed with FTD.

Symptoms of Frontotemporal Dementia

Frontotemporal dementia shows up in two main ways: serious communication problems and major changes in behavior and personality. Many people with FTD have a mix of both. Early on, these changes can make conversations harder and strain relationships, often in ways that are confusing for families and friends and leaving them wondering, “What happened?”

Unlike those living with other dementias, people with FTD often still remember recent events—but language and behavior take the hit. Over time, these problems can get worse. People may stop speaking altogether, experience major changes in personality and behavior, and eventually be unable to live independently.

We’re not talking about forgetting a few words now and then; that’s being human. It’s a steady decline that makes communication very hard. People with FTD may also slur words when they speak due to weakness in the muscles involved in speech production. Sometimes, people are aware of their language problems and struggle in real time. So, if you’ve successfully ordered a sandwich today or discussed last night’s upset in the WNBA, you’re good.

A caveat: Subtle changes in language may emerge early in Alzheimer’s disease. However, FTD often begins with not-so-subtle, noticeable language difficulties.

Someone experiencing behavioral FTD may seem like a different person than before. Personality changes can include rudeness, reduced empathy, poor judgment, overspending, increased sexual interest, and less attention to hygiene. New habits may emerge, such as overeating (especially sweets), hoarding, or repeating the same behaviors over and over.

These symptoms resemble depression, schizophrenia, or obsessive-compulsive disorder, so getting the right diagnosis can take time.

Family and friends often struggle because the person’s hurtful, rude behavior can feel personal. It’s not. These behaviors reflect brain disease, not a lack of love or concern.

People with behavioral FTD often do not recognize that anything is wrong. Executive functioning, which involves planning, organizing, self-control, and adapting, is impaired, limiting insight into their own behavior. It’s like a company trying to function without a CEO and no one at the helm.

This creates a painful challenge for family and friends. Everyone knows that something is wrong—everyone except the person experiencing it.

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Technical Information

Here’s the technical explanation: The brain is divided into sections, called lobes. Different lobes help carry out different functions such as movement, vision, and language.

The frontal and temporal lobes are the driver’s seat of human cognition. The frontal lobes are located behind the forehead, and the temporal lobes are near the ears. FTD often involves damage to these lobes and their connections with other parts of the brain. The wiring is faulty.

Other forms of dementia may target other parts of the brain. For example, Alzheimer’s disease is linked to changes in memory-related areas such as the medial temporal lobes and the hippocampus, although it spreads throughout the brain over time.

Many dementias, including Alzheimer’s disease, are influenced by genetic risk, but most cases are not strongly inherited and reflect a mix of aging, health, and lifestyle. FTD is more likely to run in families, and researchers have identified specific gene changes in some cases. Studying these genes may lead to more targeted treatments.

What Can Be Done?

Diagnosis of FTD is complicated. Primary care physicians typically do not have the training to identify it. And posts like this one are simply sources of education and speculation.

As with all forms of dementia, the diagnostic process begins with clinical presentation (i.e., language or behavioral symptoms), patterns of change, and family history. It is also important to rule out causes of the symptoms, such as medication, sleep apnea, or depression.

If FTD or another dementia is suspected, the first step is usually referral to a neurologist. Neurologists use cognitive and speech-language testing, brain imaging, and blood tests to help make a diagnosis. MRI and other scans can show whether specific brain regions are damaged, while blood tests help rule out other causes and clarify the type of dementia.

There are no proven treatments to slow or stop the disease processes underlying FTD; existing treatments are focused on managing symptoms. Innovative treatments for FTD are being developed, including interventions for communication, behavior, and education.

Researchers here at the University of Texas at Austin are developing personalized behavioral and neuromodulatory (brain stimulation) interventions that help individuals with aphasia retain the ability to communicate about topics most important to them. Some people may prefer discussing the WNBA, while others may prefer talking about cooking and their family.

Caregiver training programs to help families cope with the stressful changes that accompany an FTD diagnosis are also in the works, and the Association for Frontotemporal Degeneration offers an array of resources. These treatments and supportive services hold great promise for optimizing communication and quality of life for individuals and their loved ones facing this devastating diagnosis.

Co-authored by Maya Henry, PhD, CCC-SLP, Associate Professor, Departments of Speech, Language, and Hearing Sciences and Neurology at The University of Texas at Austin and Director, Aphasia Research and Treatment Lab.