In Vogue, Tallulah Willis shares insight into Bruce Willis's frontotemporal dementia and the earliest signs something was wrong. FTD expert Dr. Brad Dickerson adds context.
It can be difficult to tell the difference between early signs of dementia and “normal” aging. And once it’s clear something is off, it can be difficult to take the next step — and to navigate the emotional work that follows. In Vogue magazine, Tallulah Willis opened up about her dad Bruce Willis’s dementia diagnosis, his journey with frontotemporal dementia (FTD) — and her own journey through illness and diagnosis.
“My family announced in early 2022 that Bruce Willis was suffering from aphasia, a brain-mediated inability to speak or to understand speech,” Tallulah, 29, began in the essay, which was published Wednesday. “We learned earlier this year that that symptom was a feature of frontotemporal dementia, a progressive neurological disorder that chips away at his cognition and behavior day by day. But I’ve known that something was wrong for a long time.”
In her essay, Tallulah Willis dives into Bruce’s earliest dementia symptoms. For Being Patient, Dr. Brad Dickerson, the director of the Massachusetts General Hospital Frontotemporal Disorders Unit and Neuroimaging Lab in Boston provided some context on what he was going through.
Bruce Willis’s first FTD symptom: aphasia
According to Dickerson, an advisor for Being Patient, aphasia is a problem with communication. “It can be a problem with expressing yourself linguistically in language, a problem with understanding what other people say to you, or a mix of both,” he explained in a recent Being Patient LiveTalk on FTD and its early symptoms. “When a neurologist typically thinks about a patient with aphasia, they think the patient might have had a stroke, or they might have had a brain injury. But those are usually pretty sudden, what we know is that a lot of people may develop a gradually progressive difficulty expressing themselves in words.
This isn’t just coming up with someone’s name, Dickerson added. “It’s more than that, and it affects communication in a greater way. For some number of years, it may be completely isolated and may be gradually progressive aphasia, which is often referred to as primary progressive aphasia because the main problem is language. Sooner or later, and in almost everyone with that condition, other cognitive or behavioral symptoms will develop, turning into a more general type of dementia.”
Early signs of frontotemporal dementia
There are a couple of types of aphasia, Dickerson said. “Patients with the nonfluent type of progressive aphasia will often say, ‘I can’t get the words out in a normal way,’ and that flow is like a sentence. You can usually hear a problem in the way they’re speaking, which is often more monotone or more choppy, and fragments of sentences, and that’s typically expressive aphasia.”
Then, he said, there is a semantic variant of progressive aphasia. In this case, Dickerson said, patients typically “don’t understand what less common words mean and often have a lot of trouble figuring out how they can get the word out that they really want to get out. That’s a lot different than just most of us having, taking longer to come up with the word that we specifically want to use. It’s more of a situation where someone might say, ‘Does a cork float in water?’ And the patient might say, ‘What’s a cork? I don’t even really know what that is.’ It’s really quite striking when you see it, but at the beginning, it can be subtle.”
“It started out with a kind of vague unresponsiveness, which the family chalked up to Hollywood hearing loss: ‘Speak up! Die Hard messed with Dad’s ears,'” Tallulah wrote.
This seeming unwillingness to talk or have a conversation was actually an early sign of Bruce Willis’s FTD. Other early signs of frontotemporal dementia (FTD), according to Dickerson, could include the following symptoms:
- Personality changes and mood changes, including apathy and depression
- Lack of social inhibition or a seeming inability to pick up on social cues
- Obsessive or repetitive behavior, such as compulsively shaving or collecting items
- Unusual verbal, physical, or sexual behavior
- Weight gain due to dramatic overeating or binge eating
“Major depressive disorder is a disorder of the frontal systems, as well as other systems of the brain,” Dickerson explained. “It’s not surprising that some of the symptoms might look in some ways similar.”
When living with the behavioral variant of progressive aphasia, Dickerson said, “People often do things that may not be appropriate to the situation they’re in. We call that disinhibition. Loss of filter is what a lot of family members will refer to it as they may become what looks like obsessive-compulsive.”
Even when you ask them, “Why are you doing those things,” they’ll often not even realize that they’re collecting, organizing, or hoarding things in a way that their family member reports on.
For other people, this may manifest like a substance abuse or an eating disorder, he said. A patient may “have a very specific fixation on certain kinds of foods or on drinking drinks, including alcohol, but sometimes including other kinds of drinks.”
Bruce Willis’s family’s response to FTD
Gradually, that initial unresponsiveness Tallulah and her siblings and stepmother had noticed about Bruce grew. “I sometimes took it personally,” she recalled. “He had had two babies with my stepmother, Emma Heming Willis, and I thought he’d lost interest in me. Though this couldn’t have been further from the truth, my adolescent brain tortured itself with some faulty math: I’m not beautiful enough for my mother, I’m not interesting enough for my father.”
But after Bruce’s diagnosis, the Willis family understands how FTD has physically and functionally changed Bruce Willis’s brain, causing these mood and behavior changes. And both Tallulah and Emma, in their own ways, have become crusaders for FTD awareness — Tallulah through speaking openly about the experience, and Emma as well, via her Instagram and her engagement with FTD advocacy organizations and her support of other dementia caregivers.
Emma Heming Willis also drives home the point, on her social media, that if a person is seeing these same signs in their own loved one, don’t wait to speak with a doctor about what might be the cause.
Like anything in medicine, identifying and recognizing these sometimes obscure and disjointed symptoms and signs is going to be best done by a medical professional with deep experience in neurological disorders and neurodegenerative diseases, according to Dickerson. Getting an accurate diagnosis may take persistence, specialists, and multiple opinions he added. “Usually, a brain MRI scan might be plenty to make a diagnosis confidently of FTD early in the course of the illness, or you might need more specialized testing, like a PET scan, in order to figure it out,” he said. “A lot of those things are, you know, best recognized by an experienced specialist that knows what FTD looks like.”
After an FTD diagnosis, what’s next for Bruce Willis’s family?
In Tallulah’s essay, she also touches on the future, and on the good things she has left. “He still knows who I am and lights up when I enter the room,” she wrote of her dad. “He may always know who I am, give or take the occasional bad day. One difference between FTD and Alzheimer’s dementia is that, at least early in the disease, the former is characterized by language and motor deficits, while the latter features more memory loss.”
She has hopes for her father that she is reluctant to let go of, she adds. “I’ve always recognized elements of his personality in me, and I just know that we’d be such good friends if only there were more time. He was cool and charming and slick and stylish and sweet and a little wacky—and I embrace all that. Those are the genes I inherited from him. Having grown up a Jersey boy with a scarcity mentality, he loved to enjoy the life he had made for himself. He was an indulger. Sometimes we’d go to a restaurant and he’d order one of everything on the menu just to have a bite of it all. He always loved a cozy couch with his feet up. Can you be 10 percent more comfortable? I think he asked himself that every day. And now that I’m feeling better I ask myself, How I can make him more comfortable?”
Watching her dad one go through this is a test for the ages, but Tallulah has her stepmother and siblings by her side for it, she added. “It feels like a unique and special time in my family,” she said, “and I’m just so glad to be here for it.”