What Is Frontotemporal Dementia? Everything to Know About Bruce Willis' Diagnosis
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Bruce Willis has been diagnosed with frontotemporal dementia, his wife Emma Heming Willis shared via Instagram on Thursday.
Heming Willis, 44, explained that the 67-year-old actor's condition has worsened since the family first revealed his aphasia diagnosis last year.
"Since we announced Bruce's diagnosis of aphasia in spring 2022, Bruce's condition has progressed and we now have a more specific diagnosis: frontotemporal dementia (known as FTD)," she wrote.
"Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis."
Frontotemporal dementia is an all-encompassing term for a group of brain disorders that threatens the frontal and temporal lobes of the brain. This means that parts of these lobes atrophy, and the shrinking of these areas can cause speech issues, emotional problems and changes in personality.
Dr. Allison Reiss, an expert on dementia-related illnesses who is a member of the Alzheimer's Foundation of America's Medical, Scientific and Memory Screening Advisory Board, spoke to PEOPLE regarding the condition and some of the things Willis and his family might be experiencing.
Although stating that FTD is different from Alzheimer's Disease — which it is often confused with — due to certain aspects, including how their respective chemistries affect the brain, Weiss related that the prognosis is the same.
"You end up losing so much of your brain that you end up in a vegetative state," she noted. "This is a very sad reality, it only goes downhill. Everyone wants to know what the cure is; what the treatment is: Nothing. We can't really do anything to stop the progress."
The Willis family said in their official statement regarding Bruce's diagnosis that it was a "cruel" disease, and Reiss agrees with this assessment.
"I think 'cruel' is very apt," she noted. "To see someone with a brain disorder that is taking them away piece by piece, but they are healthy otherwise—because many people with these disorders, the rest of them is very healthy—that's very hard for anybody to see that."
"I can definitely understand [calling it 'cruel']. Because isn't one of our greatest fears is to lose "us"—who we are? I'm speaking very honestly as a person, not just a medical professional."
Matt Stone/MediaNews Group/Boston Herald via Getty Bruce Willis and wife Emma Heming Willis in 2008.
Reiss described some of the symptoms of primary progressive aphasia, the category of FTD she believes Willis is experiencing.
"These are people who don't understand words anymore. They lose the ability to name things, or they can't come up with the right name for things. As it progresses they don't know what words mean anymore," she explained.
"They forget the name of familiar objects — they'll call a bowl a plate, or a fork a knife; they just aren't able to get the right word. At first, they know what they want to say, but with progression, they lose the meanings of words."
The causes of FTD are largely unknown, but some genetic mutations have been linked to the disease. However, more than half of people with the condition have no family history of dementia. Patients typically begin to notice symptoms between 40 - 65 years of age, but it can affect people who are younger. It is the most common form of dementia for people under 60.
There is no single test to diagnose the disease, so doctors must evaluate patients' reflexes, memory and problem solving skills among other health factors to come to a diagnosis. An estimated 50,000 to 60,000 people in the U.S. have been diagnosed with an FTD disorder, according to The Association for Frontotemporal Degeneration.
There are currently no treatments or a cure for FTD, but medications may aid with the symptoms. Reiss suggests that families who are struggling with the disease take assessment of everyone's health and make steps to find support...as well as find meaning in every minute.
"Get support, get help, and don't be isolated. Get into the community of people who have been through it," she noted.
"Make sure to take care of yourself. Treasure every day — which I think Bruce Willis's family really did. You have some time to make memories together, to live life to the fullest."
Heming Willis wrote that Bruce would want to share his struggle to help others.
"Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately," she said. "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."
