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Frontotemporal dementia: What you need to know about the condition affecting Bruce Willis

Frontal lobe atrophy on MRI film probably Frontotemporal dementia

Dr. Diana Kerwin, a geriatrics medicine physician with Texas Health Dallas, told KERA's Sam Baker the news about the actor was not surprising after Willis's 2022 diagnosis of aphasia.

About frontotemporal dementia

It's actually much less common than Alzheimer's dementia. But in people presenting with changes in brain function who are under the age of 60, it's actually the more common type of dementia. It tends to present in people that are younger, usually between 40 and 60 years of age.

Is aphasia an early sign of frontotemporal dementia?

Frontotemporal dementia actually has some subcategories of dementia. And there is one called primary progressive aphasia, where the initial symptom is absolutely just difficulty with language expression and sometimes language comprehension.

It starts in the language area of the brain, and usually the person's memory is completely intact. Everything else stays intact in the initial stages, but it then does start to spread to other areas of the brain.

So it starts in the temporal lobe where the language center is, and then it moves to the frontal lobes, which is where a lot of our personality, impulse control, and our behavior control are.

And then sometimes it can also enter into some of the motor areas where the person in the later stages might have difficulty with walking or with swallowing.

Bruce Willis
Charles Sykes/Charles Sykes/Invision/AP
FILE - Bruce Willis attends a movie premiere in New York on Friday, Oct. 11, 2019. Nearly a year after Bruce Willis’ family announced that he would step away from acting after being diagnosed with aphasia, his family says his “condition has progressed.” In a statement posted Thursday, the 67-year-old actor’s family said Willis has a more specific diagnosis of frontotemporal dementia. (Photo by Charles Sykes/Invision/AP, File)

But it was not a surprise when Bruce Willis presented with the aphasia diagnosis last year that as this progressed to other areas of the brain, they were able to get a more accurate diagnosis and say this is an aphasia caused by this frontotemporal dementia, which is degeneration of those neurons in the frontal and temporal lobe.

Is frontotemporal dementia easy to misdiagnose?

Dementias in general can be challenging for physicians to pick up in the very early stages. And when it is a less common dementia, it becomes even more challenging.

Oftentimes because patients with frontotemporal dementia are younger and depending on how it presents, they might get a misdiagnosis of depression or anxiety or something else. And they may miss the diagnosis potentially for a couple of years.

Given that it could be motor symptoms, communication symptoms, or behavioral symptoms, what actually defines frontotemporal dementia?

Typically with frontotemporal dementia, if they're already exhibiting difficulty with aphasia, the language center on an MRI, you may be able to detect atrophy of the neurons in that language area and say something's causing these neurons in the language to die or degenerate. That may increase the likelihood that you're going to get the diagnosis early on.

There are some other tests that the physician can send the patient for:

  • Neuropsychological testing - Meeting with a trained neuropsychologist who specializes in looking at and testing all the different domains of your brain.
  • Specialty types of brain scans. PET scans can look at glucose uptake to see if the neurons are functioning in that and the frontal and temporal areas of the brain.
  • Some specialized scans can pick up some of the abnormal proteins that we see in different dementia.

So it's really just a matter of the physician being very thorough about finding the underlying cause.

Does treatment exist?

There are several investigators, researchers, and organizations around the world that are focused on frontotemporal dementia research and looking at treatments that do exist. That's the hopeful news.

The sad part is the treatment right now is focused on accurate diagnosis and then giving the patient and family information on we keep their brain healthy and try to help them get as much function as they can over time. We don't currently have medications that can stop or slow the progression.

However, there are multiple organizations in the community that can help provide resources about how to support their loved ones, keep their brain healthy, and maintain activity and function as long as possible.


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Sam Baker is KERA's senior editor and local host for Morning Edition. The native of Beaumont, Texas, also edits and produces radio commentaries and Vital Signs, a series that's part of the station's Breakthroughs initiative. He also was the longtime host of KERA 13’s Emmy Award-winning public affairs program On the Record. He also won an Emmy in 2008 for KERA’s Sharing the Power: A Voter’s Voice Special, and has earned honors from the Associated Press and the Public Radio News Directors Inc.