In honor of World Frontotemporal Dementia Awareness week, Emma Heming Willis, wife of actor Bruce Willis, joined TODAY for an exclusive interview, her first on TV since her husband was diagnosed with the condition.
On Sept. 25, she sat down with TODAY co-anchor Hoda Kotb, along with CEO of the Association for Frontotemporal Degeneration Susan Dickinson, to discuss her caregiving journey and share a brief update on Bruce Willis' health.
“Dementia is hard,” Heming Willis said on TODAY. “It’s hard on the person diagnosed, it’s also hard on the family. And that is no different for Bruce, or myself, or our girls. When they say this is a family disease, it really is.”
She added that "it's hard to know" how aware Bruce Willis is of his condition.
For Heming Willis, processing her husband's diagnosis has been "the blessing and the curse," she said. “To finally understand what was happening so that I could be into the acceptance of what is — it doesn’t make it any less painful, but ... just being in the know of what is happening to Bruce makes it a little easier.”
To help others caring for a loved one with FTD, Heming Willis is releasing on her YouTube channel a new video with experts every day of World FTD Awareness Week, from Sept. 24 to Oct. 1.
Bruce Willis' family revealed in February this year that, after experiencing communication difficulty also known as aphasia, his condition had progressed into FTD, a less common type of dementia that affects the frontal and temporal lobes of the brain.
"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). 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," the Willis family said in a statement at the time..
Here's what to know about frontotemporal dementia.
What is frontotemporal dementia?
Frontotemporal dementia refers to a group of neurodegenerative diseases that affect the frontal and temporal lobes of the brain. The condition affects 15 to 22 people per 100,000 and presents sooner than most age-related brain disorders, such as Alzheimer's; the average age of symptom onset is 58, according to the Cleveland Clinic.
"Most people, when they think of the word dementia, they think problems with memory and Alzheimer's disease, but FTD doesn't really show up as problems with memory. ... It affects how people behave, how they interact with others and how they speak," says Dr. Sami Barmada, director of Michigan Brain Bank and associate professor of neurology at University of Michigan Medicine, tells TODAY.com.
It's more common among men than women, Barmada adds.
These behavior and language functions live in the front parts of the brain and the parts on the side near our temples, the temporal lobes, Barmada says. The frontal lobe is responsible for things like decision-making, judgement, movement, speaking, self-control and social skills, and the temporal lobes are responsible for hearing, understanding spoken language, memory and emotional expression, per the Cleveland Clinic. In people with FTD, these functions will be impacted as those parts of the brain progressively deteriorate.
"In the case of frontotemporal dementia, there is an abnormal accumulation of protein in the neurons or nerve cells in the brain that stops them from functioning normally," Dr. Jagan Pillai, neurologist with Cleveland Clinic Lou Ruvo Center for Brain Health, tells TODAY.com.
These protein malfunctions occur as a result of certain mutations in our DNA, which can be spontaneous or run in families, per the Cleveland Clinic. About four out of every 10 people diagnosed with FTD have a family history, estimates Barmada.
"When (the protein buildup) starts affecting the language part of the brain, you get frontotemporal dementia with an aphasia presentation," says Pillai, adding that if the neurons are damaged in other areas of the brain, this can cause problems with behavior, personality or motor coordination.
One of the subtypes of FTD is primary progressive aphasia, according to the Cleveland Clinic. These patients have "difficulty expressing themselves, understanding what’s being spoken and figuring out the meaning of things sometimes,” says Pillai.
The most common reason people experience aphasia is a stroke, but aphasia can also occur with neurodegenerative conditions that are progressive — one of these is frontaltemporal dementia, Pillai explains, but Alzheimer’s disease can also present with aphasia.
Unlike the aphasia following a stroke, which causes a sudden loss of ability to speak, progressive aphasia often starts as mild and gets substantially worse over time, says Barmada.
What are the first signs of frontotemporal dementia?
"Not everyone shares the same symptoms. Depending on what part of the brain is primarily involved, you'll get certain symptoms," says Pillai.
The first signs of frontotemporal dementia are usually the loss of the ability to speak or understand language (aphasia), which occurs when the temporal lobes are affected by the buildup of proteins, or apathy, which occurs when the frontal lobes are affected, according to University of California, San Francisco Health.
Barmada says apathy, which he describes as "a disengagement or a lack of feeling or interest," is the most common sign of FTD. People may not enjoy the things they used to love doing or show affection for spouses in the same way, for example.
Another common, first sign of FTD is a problem with inhibition and self-control, per Cleveland Clinic. "There are things that we all say or think about, but we don't actually do — but in FTD, it's like (being) a 7-year-old again," says Barmada, adding that people may swear and say or do inappropriate things they wouldn't ordinarily do.
Symptoms of frontotemporal dementia
The symptoms of frontotemporal dementia are primarily related to language or behavior, per UCSF. These include:
- Apathy or unwillingness to talk
- Change in personality, such as being more depressed
- Lack of social awareness
- Obsessive behavior
- Difficulty speaking or finding the right word
- Difficulty reading and writing
"It doesn't look like a dementia or something that you can put your finger on. ... Very often you'll hear people say they just started to act really weird, and they're not the same person," Barmada says.
These personality and behavior changes may be misattributed to other mental health disorders like depression, anxiety, stress, schizophrenia or bipolar disorder, says Barmada. People with FTD can go a long time before their symptoms are recognized as a degenerative disease of the brain.
"We don't have the same sort of means of identifying people with FTD or a test that we can administer," says Barmada.
Frontotemporal dementia is a very challenging diagnosis to make, says Pillai, but the first step is recognizing a consistent change that can be quantified, which often requires an evaluation by a specialist like a neurologist. The next step may involve tests such as an MRI or brain scans to recognize what could be driving these changes and to rule out other conditions, such as Alzheimer's, says Pillai.
Less commonly, people with FTD can experience problems with movement or motor function, also controlled by the frontal lobe, says Pillai. FTD symptoms can occur with other conditions like Parkinson's and amyotrophic lateral sclerosis (ALS), per the Cleveland Clinic.
How long is the life expectancy of someone with frontotemporal dementia?
The life expectancy for someone with frontotmeporal dementia depends on the parts of the brain affected, how severely they are affected and the rate of disease progression, says Pillai.
According to the Cleveland Clinic, the average life expectancy after a diagnosis of FTD is 7.5 years. The Association for Frontotemporal Degeneration gives a range of 7 to 13 years. Barmada says 10 years or longer is a good prognosis.
The best-case scenario is that a person with FTD is able to maintain independence and quality of life as much as possible for as long as possible, and they're not being hospitalized or having medical complications, says Pillai.
"One of the biggest factors that determines prognosis, sadly, is the level of care or the quality of care that people receive ... not just from physicians but also caregivers, family, friends," says Barmada. If someone does not have quality care, they can get into dangerous situations and their prognosis is poor, Barmada adds.
Can frontotemporal dementia be treated?
Currently, there is no cure for FTD and treatment mostly involves managing symptoms, the experts say. While there is no treatment to slow the progression of the disease, work is being done to try to change that.
"There's a lot of effort devoted to developing a treatment now more than ever. There are candidates being tested, and this is a really quickly moving area," says Barmada.
In the future, Barmada says he hopes that we will be able to both treat people who are already diagnosed with FTD and those who have the DNA mutations but have not yet developed symptoms.
"I think that this will change in the next five to 10 years ... that there will be a means of preventing it for people who have a known genetic mutation," says Barmada.
The increased awareness due to Willis' diagnosis will hopefully help the FTD community, the experts say.
"Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues," the Willis family wrote in their statement. "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."
Caregiving resources for FTD
Check out these resources from the Association for Frontotemporal Degeneration to learn more about the condition and caregiving.
- For those concerned that they have or know someone who has FTD, this frontotemporal dementia diagnostic checklist can help.
- Register for the Oct. 2 webinar featuring AFTD’s HelpLine staff answering questions and providing support for the FTD journey.
- Learn more about AFTD’s World FTD Awareness Week activities, which run from Sept. 24 to Oct. 1.
For guidance and resources regarding frontotemporal dementia, diagnosis, care and support, contact AFTD’s HelpLine at 866-507-7222 or by email at info@theaftd.org.