Bruce Willis' type of dementia one of several forms that can strike

March 06, 2023
Demi Moore Instagram post about Bruce Willis' dementia diagnosis. It includes a photo of the actor standing on a beach in shorts and a t-shirt, looking happy.
Bruce Willis' former wife, Demi Moore, posted on Instagram about his diagnosis of frontotemporal dementia, known as FTD.

The type of dementia affecting the actor Bruce Willis is just one of several forms that dementia can take. Figuring out which one a patient has is important because it can affect the kind of care needed and what the patient and family members can expect. 

Willis, 67, has frontotemporal dementia. It’s a rare condition that usually shows up earlier than other forms of dementia. 

Neurologist Nicholas Milano, M.D., specializes in treating patients with all types of dementia at the MUSC Health Memory Disorders Clinic. He explained what Willis is dealing with. “Frontotemporal dementia is really an umbrella term that covers two big two types of dementia,” Milano said. 

“That umbrella term includes the behavioral variant of frontotemporal dementia. Patients with the behavioral variant of frontotemporal dementia have a progressive change in their personality where they become disinhibited or maybe apathetic and have more trouble with problem-solving when it comes to their thinking.” 

The other disorder under the umbrella of frontotemporal dementia is primary progressive aphasia, Milano said. “Aphasia means lack of language. So, it's a primary progressive disease of language. Both have the same or similar pathologies, but it depends on where that pathology is in the brain.” 

Nicholas Milano, M.D. 
Dr. Nicholas Milano

Willis, famous for his roles in dozens of movies, including “Die Hard,” “Pulp Fiction,” “Looper” and “The Sixth Sense,” was diagnosed with aphasia in March 2022. This month, his family said he has progressed to frontotemporal dementia. “I can't say for certain, as I don’t know the details of Mr. Willis' case, but given the fact that the family previously reported he was diagnosed with aphasia, he probably fits the diagnosis of primary progressive aphasia,” Milano said.

“While everyone is different, the average life expectancy of a patient diagnosed with frontotemporal dementia is nine years from the first symptom but five years from the first diagnosis. Because usually there’s a delay in diagnosis.” 

There is no cure or way to slow the progression of frontotemporal dementia, Milano said. “Because it’s less common than Alzheimer's disease, there probably hasn’t been as much research, and there haven't been any treatments that have been shown to be beneficial.” 

But doctors and family and friends can work together to try to make a patient, such as Willis, as comfortable as possible, often with the help of psychiatrists, speech therapists, neurologists and other specialists. 

Alzheimer’s disease 

There is more encouraging news about the most common dementia diagnosis: Alzheimer’s disease. “I have more optimism than I have in a while. I think, in general, there's more optimism among everyone now because there are some drugs that, even though they're not slam dunks, they look a lot more promising than everything anything else in the last 20 years,” Milano said. 

The drugs, Aduhelm and Leqembi, were approved by the Food and Drug Administration under accelerated approval because they were able to clear amyloid plaques from the brain. The plaques, which are made of protein fragments, can cause problems with how the brain works. 

Milano said he’s especially hopeful about Leqembi. “In the lecanemab [brand name Leqembi] studies, it also slowed progression of memory loss in patients. Now the question is did it slow it by a meaningful amount or not? I think time will answer that, but we've never had that before. We haven't had a med that's done that before.”  

Both drugs have to be given in the early stages of Alzheimer’s disease to have a shot at making a difference. “You have to catch it within the first year or so of the disease. So that's why it's really important that if you’re having symptoms, you talk to your doctor. You don't want to put it off because that's the time when, theoretically, you could be put on one of these meds,” Milano said. 

Warning signs include forgetting whole conversations, repeating questions and getting lost while driving. “Those are significant symptoms that are more worrisome and require a more thorough evaluation,” Milano said. 

Alzheimer’s disease progresses at different rates in different people. Most live four to eight years after diagnosis but some as long as 20 years, according to the Alzheimer’s Association.

Other causes of dementia 

While Alzheimer’s disease affects the bulk of its patients, Milano’s team at the MUSC Health Memory Disorders Clinic sees many other types of dementia as well. “There are lots of different causes of dementia. You can have reversible things, even like vitamin deficiencies, or you could have strokes, which cause a vascular dementia, or you could have a degenerative disease of the brain that progresses to cause dementia.” 

Types, in addition to the ones Milano mentioned, include dementia with Lewy bodies, which is related to Parkinson’s disease, and mixed dementia, which may mean having both Alzheimer’s and vascular dementia. 

They have different names, but they have something important in common. “All of these degenerative diseases have basically a buildup of abnormal proteins in the brain, which cause the neurodegeneration. So it's just different types of abnormal proteins,” Milano said.  

It’s unclear why the proteins build up. Scientists are trying to figure that out.

But Milano said doctors already know there are risk factors for dementia that people can try to avoid. “A lot of them are very similar to your cardiac risk factors. So your vascular risk factors, like blood pressure, cholesterol, diabetes, all of those are really important to treat and make sure they're managed properly. Being sedentary is thought to be a risk factor. Depression is a risk factor. So make sure that if you are having symptoms of depression or anxiety to talk to someone about it and get treatment if needed.” 

Get treatment and give the body and mind a workout if possible. That can help maintain brain health, lowering the risk of dementia.  

“People who do physical exercise, that's considered a preventive factor. People who are continuing to exercise their minds do better as they get older. It helps maintain brain and cognitive reserve. So what does that mean? There hasn't been anything that has been shown to be better than anything else. So, for example, doing crossword puzzles is not better than reading. It’s just finding something that you enjoy and that you do regularly,” Milano said. 

And don’t freak out about minor forgetfulness. “The symptoms that I hear all the time in older adults that I don't worry about are, ‘I have trouble pulling up someone's name. I know who they are, but the name won't come to me, and eventually it does.’ Well, that's not worrisome; that's very normal. Also, things like misplacing keys — usually that doesn't bother me at all when I hear about that.”

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