The family of actor Bruce Willis announced on February 16 that he has been diagnosed with frontotemporal dementia, a degenerative disease that currently has no treatment.
Willis, 67, was diagnosed nearly a year ago with aphasia, a language disorder caused by damage to the part of the brain that controls speech and comprehension.
“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 family said in a written statement.
Willis’s family — wife Emma Heming Willis, ex-wife Demi Moore and his five daughters — published their statement on the website of The Association for Frontotemporal Degeneration (AFTD). The family announced Willis’s retirement in March 2022, citing his aphasia diagnosis.
“FTD is a cruel disease that many of us have never heard of and can strike anyone. For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know,” the Willis family wrote in its latest statement.
They encouraged people to learn about FTD and to support the AFTD, noting that they are just one family with a loved one suffering from FTD. And they said that if he was able to, Willis would want to bring global attention to this disease.
Progressive and often genetic
According to the AFTD’s website, between 50,000 and 60,000 people in the U.S. have FTD (also known as frontotemporal degeneration). It notes that many experts believe this figure to be underestimated because the disease is difficult to diagnose and many clinicians are unfamiliar with it.
The AFTD explains that FTD is “a progressive brain disease with changes in behavior, personality, and language dysfunction due to loss of nerve cells in the frontal and temporal lobes.”
According to the AFTD, studies have found that 40% or more of FTD cases are known to be familial. In addition, “All genetic forms of FTD are autosomal dominant, meaning that if one parent has an FTD-associated variant, the child has a 50% chance of inheriting it,” it says.
One of the gene mutations that causes FTD also causes amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, the AFTD also notes.
Bob Powers, a playwright and performer who has been raising awareness of FTD disorders through his play “Chasing Rainbows,” about his late spouse’s struggle with primary progressive aphasia, shared with Rethinking65 his reaction to Bruce Willis’s diagnosis:
“With gratitude and thanks to the Willis family, millions of Americans will now learn more about FTD, dementia and all of its debilitating and sad effects,” he said. “My heart goes out to the entire Willis family and friends.”