Actor Bruce Willis has been diagnosed with frontotemporal dementia (FTD), a group of brain disorders affecting a patient's frontal and temporal lobes, according to a statement from his family — news that comes nearly a year after the actor announced he'd retire after being diagnosed with aphasia.
According to a statement signed by Willis' wife Emma Heming Willis, his ex-wife Demi Moore, and his five daughters, Willis' condition "has progressed" since the announcement of his aphasia diagnosis in spring 2022 "and we now have a more specific diagnosis."
The family noted that Willis has had "challenges with communication," but that is just "one symptom of the disease Bruce faces," adding that FTD is a "cruel disease that many of us have never heard of" but the family is relieved "to finally have a clear diagnosis."
"Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately," the statement 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."
According to the Association for Frontotemporal Dementia (AFTD), FTD is the most common form of dementia for people under the age of 60. It refers to a group of brain disorders caused by the degeneration of the frontal and/or temporal lobes of the brain. Generally, these parts of the brain are associated with personality, behavior, and language, according to the Mayo Clinic.
The exact cause is unknown, but some organizations say there are genetic mutations linked to FTD. "Some people with FTD have tiny structures, called Pick bodies, in their brain cells," according to Johns Hopkins Medicine. "Pick bodies contain an abnormal amount or type of protein."
Paul Schulz, a professor of neurology at The University of Texas Health Science Center at Houston, said trauma is another possible cause of FTD.
Symptoms of FTD vary patient-to-patient because it depends on where the disease develops and how it spreads, Schulz said. "Depending on where it starts, you'll have a manifestation that goes along with that," he said. "It will spread to other parts, and you'll get other symptoms."
People with FTD often experience unexplained personality changes, difficulties with language comprehension and speaking, and apathy or unexplained struggles, according to AFTD.
"For example, a polite person may become rude and a kind person may become self-centered," said Andrew Budson, chief of cognitive and behavioral neurology, associate chief of staff for education, and director of the Center for Translational Cognitive Neuroscience at the Veterans Affairs Boston Healthcare System. "There may also be a lack of self-control that sometimes causes overeating of foods, such as an entire jar of mayonnaise, which one of my patients ate."
Another common symptom is social disinhibition, according to Ryan Darby, assistant professor of neurology and director of the Frontotemporal Dementia Clinic at Vanderbilt University Medical Center. "They may even commit crimes because of their disinhibition and socially inappropriate behaviors," he said. "They lose empathy and compassion toward others."
Anosognosia, or the inability to recognize one's illness, is also common symptom of FTD, according to AFTD. "People who present with anosognosia display a profound lack of insight and emotional concern about their disease and its impact on their family members," the organization says.
AFTD estimates there are around 50,000 to 60,000 people diagnosed with FTD in the United States, but noted the disease is frequently misdiagnosed as Alzheimer's, depression, Parkinson's, or a psychiatric condition, and it frequently takes more than three years to get an accurate diagnosis.
There are no treatments for FTD, however some medications can help treat symptoms. "Depending on the part of the brain that's involved, we have medicines that are often helpful," Schulz said. "Unfortunately, they don't cure the disease process underlying it, but they can help with the symptoms a lot to make the person's quality of life much better."
"It's really important for people who have a progressive dementing syndrome like FTD to continue to eat well, exercise regularly, and stay connected with people," said Henry Paulson, a professor of neurology and director of the Michigan Alzheimer's Disease Center at the University of Michigan. "Those activities are not medications, they're not curing the disease, but they can help your brain work as well as possible."
FTD can lead to life-threatening issues like pneumonia, infection, or injuries from a fall, according to FTD. "People don't actually die of the disease, per se," Schulz said. "What we lose people from eventually is those medical complications."
However, according to Paulson, it is possible for FTD patients to continue having active, satisfying lives while their disease progresses.
"I've seen patients who completely lose their speech and yet they go out and take their camera and take beautiful photographs of the lives they're living," he said. "They can’t tell me in words, but they can tell me in pictures." (Scribner, Axios, 2/16; D'Zurilla, Los Angeles Times, 2/16; Mendoza, USA Today, 2/16; LaMotte/Rogers, CNN, 2/17; Sima et al., Washington Post, 2/16)
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