Bruce Willis and the Facts About FTD
Talking with a neurologist about the actor's frontotemporal dementia diagnosis.
My dad has always reminded me of Bruce Willis. He doesn’t look like him, but he has the same sort of “here for a good time,” tough-guy-meets-sweetheart vibe. Maybe that’s why I felt so crushed by news of the actor’s frontotemporal dementia diagnosis, which his family confirmed across coordinated Instagram posts last week. It just doesn’t seem like a fair way for our heroes to go down.
“Unfortunately, challenges with communication are just one symptom of the disease Bruce faces,” the ladies of Willis/Moore wrote. “While this is painful, it is a relief to finally have a clear diagnosis.”
To better understand FTD, I spoke with Dr. Sami Barmada, director of Michigan Brain Bank and associate professor of neurology at University of Michigan Medicine, earlier today. Below is a transcript of our conversation, lightly edited for clarity and length.
The Willis/Moore family disclosed that Bruce was diagnosed with aphasia in the spring of 2022. Does aphasia progress to FTD, or is it just a symptom of it?
Aphasia is just a symptom—it’s a problem with language—and there are many things that can cause it. Actually, the most common reason for someone to have aphasia is a stroke. That [causes] a sudden-onset loss of the ability to speak, [but] then slowly, over time, hopefully, there is some recovery of that function.
There are other types of aphasia, but the one that comes up in the context of FTD is a progressive aphasia, where it starts minimal—maybe someone has a hard time coming up with a word or maybe they substitute words for things that sound the same, so instead of saying key they say carrot—but then slowly gets worse. It’s gradually progressive.
In the absence of other findings, we call that a primary aphasia, because it’s the first and most salient problem. A primary progressive aphasia (PPA) is one of the subtypes of frontotemporal degenerative disease or FTD.
I think a lot of people, myself included, hear about aphasia and think, “Oh jeez, I forget words all the time.” How can we tell if we’re just experiencing the normal brain farts that come with age or stress, or if it’s something more?
It can be very hard, and I think the most important thing to remember is that it’s not black-and-white; there’s lots of gray. We know that with aging there are certain characteristic changes. For instance, there’s some slowing in processing speed, so when somebody asks you a question about that guy that you met at dinner two weeks ago and you can’t remember his name right away—but then it comes to you later? That’s actually a normal sign of aging. That’s not worrisome or indicative of any underlying condition.
But say you start missing appointments or you make financial mistakes or [your problem] interferes with your social interactions—that’s when we start saying, “This is concerning.”
There’s more than one type of FTD. Can you explain the differences?
There are the language variants, the behavioral variants, and the motor variants. With the behavioral ones, people’s personalities may change. They may become more paranoid or more standoffish, less social. Their partners say, “They just don’t care about me anymore.” And they very often lose interest and motivation in doing the activities that they usually enjoyed. That’s probably the most common type of FTD that we see.
The motor variants are the ones that affect our ability to move. Sometimes there’s overlap in what people see in Parkinson’s Disease—falls or a tremor, or abnormal movements of an arm or a limb.
Actually, there’s a motor variant that looks for all the world like Lou Gehrig’s Disease, or ALS, and we think of FTD and ALS as being very connected to one another, especially under the hood, when we start to think about what’s causing the disease.
So what is under the hood? What do we know about what’s causing FTD?
Most of these degenerative conditions or dementias, like Alzheimer’s, Parkinson’s, and FTDs, are connected to the buildup of a protein or proteins in neurons, or the cells that make up your brain.
These are usually proteins that are present in every cell, but for some reason, they just start to accumulate and build up in the neurons, and it’s like when you put too much pepper on your food: A little bit is good, but a lot of it is bad—it’s spicy and it kills the rest of your dinner.
We see a lot of therapies directed at trying to reverse that [buildup] and restore the function of these proteins.
So with FTD, the problem under the hood is related to proteins.
That’s what we believe. I think all of this should be taken with a grain of salt because we make these conclusions or associations based on what we see in the brain after somebody has passed away. We see all this protein buildup, and from that we want to be able to say, “This might have been a bad thing.” But in all honesty, we don’t know, because that’s what’s left, right? It could have been that all the cells that didn’t have the protein died.
It’s like watching the end credits of a movie and trying to figure out the plot; it’s really hard.
What does aphasia look like as it progresses? Does it just look like losing more and more words?
It depends on the type of aphasia. Most of the aphasias, I would say, people do tend to lose more and more words, usually the less common words that we don’t use as often. But it’s also just a reduction in output, meaning people who used to ask questions and have lengthy conversations, they just don’t engage in those conversations anymore. It’s hard to determine whether that’s because of the inability to find the words or because of the lack of motivation or maybe even some social anxiety because they realize they're having a hard time talking.
But there are actually some types of aphasia where people talk a lot. But when you think about their content, the meaning of the words, there’s nothing there. “That thingie. And I did that. And it was fun. I don’t know who I was with. It was great. I don’t know what time it was.” And they just keep going on like that. This is called a semantic aphasia.
Do we eventually see other symptoms come into play, even if aphasia is the primary symptom?
Over time people almost always develop other problems. Those problems might look a lot like that behavioral variant of FTD that we talked about before, with the personality changes.
Can FTD eventually impair memory?
It can. And when that happens, we tend to think that there’s some amyloid and tau [the proteins associated with Alzheimer’s] building up in the brain, but in the language centers of the brain. There’s one subtype of primary progressive aphasia called the logopenic variant that’s more closely associated with Alzheimer’s Disease.
This is why in neurology, and especially in behavioral and cognitive neurology, seeing somebody over time to get an idea of how the condition is evolving can really help us to pinpoint what the problem is.
And yet, from the caregiver’s perspective, it’s so hard to get these appointments, even if you want to see the same doctor consistently.
I fully agree. We do not have enough specialists who encounter people with dementia and help people with dementia.
Or who feel invested in seeing a patient through. Because there are so few treatments and no cure, so “what’s the point”?
At some level, it’s human nature. Especially physicians, they’re people who like to do things and make an impact, and too often people feel like there’s nothing they can do for someone who has dementia. I wholly disagree with that, because I feel like there's a lot you can do to help out that person and their family and friends and caregivers. But I think that if you’re looking for an easy solution in terms of writing a prescription, it’s not gonna happen.
So what’s your approach to helping someone with FTD and their caregivers?
A lot of it is individual. But, in general, I answer the question of what’s going on. What do we need to do to make us confident that we have the right diagnosis? Then, once we go through any additional recommended tests or interpret the tests that are already done, we start to talk about what we can actually do about it. Are there any medications that we think would help out? Are there any medications that we think are not necessary or could even be causing problems? It turns out that there are several medications that can impact our cognition and are not entirely required, or can be substituted with medications that don’t have those effects.
And then we need to think about the living situation. Are there any potentially dangerous situations that the person is involved in? Are they living on their own?
In this week’s issue of People, the Willis/Moore family said that they want to help Bruce “live as full a life as possible.” What does living as full a life as possible look like for someone with FTD?
It’s important to stay engaged—in social activities, in physical activities like dancing. The useful phrase here is “use it or lose it.”
People should be able to participate in all the things they enjoy doing, as much as possible. So if that requires having somebody with them to help them get to wherever they need to go or stay with them so that they are able to understand the directions or participate where needed, then that’s the sort of thing that I think, if possible, is really important to do for people with FTD.
The quality of life and the prognosis, even, can be dramatically affected by caregivers and just by the living situation of someone with dementia. There are so many factors, but particularly having low socioeconomic status can really change the direction of this disease.
Because you can’t pay to get help?
Or good healthcare. Or you don’t have transportation. If you can’t get to your doctor’s office, if you can’t get to the senior center, then you’re going to be living by yourself at home, with more opportunities to become depressed or get into dangerous situations.
What got you into this field?
Like many other people, I have several people in my family who have dementia. But when I was going through medical school and residency, I was just really struck by this condition, how little we knew about it—FTD in particular—and how fascinating the connection is to these other disorders like ALS or Lou Gehrig’s disease.
From my perspective, that’s an opportunity. If we can figure it out and develop some sort of treatment that is effective for ALS or for FTD, it may also be just as effective for the other conditions. So maybe you could accomplish two things with one stroke.
For more information about FTD, visit The Association for Frontotemporal Degeneration.
It’s so sad what’s happening to Bruce. This is so informative, Patti. Thank you for conducting this interview and shedding light on his diagnosis.