By Julia Landwehr

Actor Bruce Willis has been diagnosed with frontotemporal dementia (FTD)—a type of dementia that can cause issues with behavior or language skills—his family said in a statement on Thursday.

Willis, 67, was first diagnosed with aphasia, a disorder characterized by language processing issues, back in the spring of 2022. Since then, Willis’ condition has progressed, the family said, and doctors now have a clearer understanding of what’s causing his symptoms.

“Unfortunately, challenges with communication are just one symptom of the disease Bruce faces,” the family statement said. “While this is painful, it is a relief to finally have a clear diagnosis.

FTD, sometimes also called frontotemporal degeneration, is a rare form of dementia. A majority of those affected are between 45 and 64 years old, and it’s estimated that between 50,000 and 60,000 people in the U.S. have some form of FTD.45 There is currently no cure.

Here’s what experts had to say about the warning signs of FTD, why the diagnosis process can sometimes be challenging, and the questions that remain unanswered about the condition.

How is FTD different from other types of dementia?

FTD is one of many different types of dementia, but it may not look very similar to what most people think of when they hear the term.

“If you were to ask random people off the street what they think of when they hear the word dementia, they think of memory problems,” Sami Barmada, MD, PhD, Angela Dobson Welch and Lyndon Welch research professor of neurology at Michigan Medicine at the University of Michigan, told Health.

But FTD presents differently; symptoms often manifest as language or behavior issues—different from other forms of dementia, such as Alzheimer’s disease, which is characterized by memory loss, Dr. Barmada said.

Dementia is an umbrella term that refers to the symptoms a person is having, Brian Appleby, MD, professor of neurology, psychiatry, and pathology at Case Western Reserve University School of Medicine explained, and different issues in the brain explain why dementia symptoms can look so different.

FTD, as the name might suggest, is characterized by mis-folded proteins in the frontal and temporal lobes in the brain, which explains the unique symptoms it causes, Dr. Appleby said

“You tend to get symptoms associated with those anatomic areas like behavior changes, personality changes, or problems with language, usually speech and articulation,” he told Health.

These classic symptom presentations seem to be in line with what Willis is experiencing and would also explain why he was first diagnosed with aphasia 10 months ago.

Many people get aphasia after having a stroke and have trouble speaking and communicating, Dr. Barmada said. But if it gets worse, then that’s usually a sign that there’s a progressive disease—such as FTD—to blame, he said.

How to Tell the Difference Between Normal Age-Related Memory Changes and Dementia

Challenges With Diagnosis

Though Willis wasn’t necessarily misdiagnosed with aphasia, it still took nearly a full year for him to receive a proper FTD diagnosis. In many cases, however, it can take much longer.

Most FTD patients receive a diagnosis about two or three years after the start of symptoms, Dr. Appleby said. And there are a number of explanations as to why.

“Unfortunately, in our field, especially for frontotemporal dementia, we don’t necessarily have a diagnostic test that says it’s this or that,” he said. “We have to wait for the clinical symptoms to evolve into a syndrome that we can then match with what we think’s going on.”

Oftentimes, physicians have to wait for patients’ symptoms to get worse until it’s clear that they do have a progressive disorder like FTD. And on a more logistical level, diagnosis can take more time simply because there are often lots of appointments and referrals before an expert neurologist can diagnose the condition, Dr. Barmada added.

Beyond the time it takes to diagnose it, FTD doesn’t always present like typical dementia, which can cause frequent misdiagnoses.

“Probably the most common symptom associated with FTD is withdrawals or apathy,” Dr. Barmada said. But people can also show “disinhibited behavior,” which means they may act out of character, act without empathy, or act impulsively.

“On the face of it, that’s not going to lead somebody to think that this person has dementia. They’re [going to] gravitate towards depression, or just being ornery, or maybe they have a psychiatric disorder,” he said. “This is one reason why FTD gets missed or misdiagnosed or just passed over.”

Because FTD also appears much earlier than other types of dementia, these behavior changes can be passed off as something as simple as a “midlife crisis,” Dr. Appleby said.

Barriers to a prompt diagnosis are also exacerbated by general issues that exist for healthcare access in the U.S., too.

People may not think to seek medical care since FTD isn’t as well-known, or they may simply not know where to turn. And it may be especially challenging for some marginalized groups to get access to specialist care, Dr. Barmada said.

“There are so many barriers before somebody actually sees a physician, and there’s no guarantee that a primary care physician is going to be able to recognize this,” he said. “It’s challenging even for large medical centers to recognize and triage appropriately.”

The culmination of all of these, understandably, is that FTD is likely underreported, Dr. Barmada said.

Hope for a Treatment Soon

Getting diagnosed with dementia can have a number of benefits, such as easier access to information and support. But there’s currently no specific treatment or cure for FTD.

Doctors can provide some therapies to ease symptoms, Dr. Appleby said, which may include antidepressants or antipsychotics for behavioral instabilities, or occupational, speech and language, or other therapies.

Researchers are also looking for more ways to recognize and prevent FTD.

“There are some biomarkers that are present in the spinal fluid, even in the blood that can tell us about what’s going on in the brain,” Dr. Barmada said. “I am hopeful that within five to 10 years, we’ll have those biomarkers available.”

Other experts are looking into the possibility of testing and treatments for people who may have genetic links to FTD—in some cases, the disorder can run in families, Dr. Appleby explained.

In a similar vein, the Willis family hopes that his diagnosis will open up the conversation about FTD and prompt more research and awareness.

“We know in our hearts that—if he could today—he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families,” the statement said.

For the average person, Willis’ diagnosis can be a reminder that not all types of dementia look exactly like Alzheimer’s disease, Dr. Appleby said. These more unusual symptoms can still be a sign that a person or their loved one may need to be checked out by a healthcare professional.

“I’m really glad that these stories are running because I think we should be thinking about FTD more often. It is under-recognized, it doesn’t receive a lot of attention,” Dr. Barmada said. “When those problems, either in language or behavior, or personality change—when they start to interfere with your life, when they keep you from doing what you want to do, or [from] spending time with the people you love, that’s when it’s time to seek medical care.”

This articles was first seen in Health.