As Bruce Willis continues to deal with neurological health issues, his wife Emma Heming Willis is speaking out about the frontotemporal dementia (FTD) diagnosis the actor received earlier this year. In an interview with Today this morning, Heming Willis shared details on Willis’ battle with FTD, a form of brain atrophy that occurs in the front part of the brain, in an effort to raise awareness for the under-diagnosed disease.
“What I’m learning is that dementia is hard,” Heming Willis said in the interview. “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 that this is a ‘family disease,’ it really is.”
Frontotemporal dementia, or FTD, occurs when portions of the front and temporal lobes of the brain begin to shrink, or atrophy, according to Mayo Clinic. These parts of the brain are associated with personality, behavior, and language, and FTD comes with a range of symptoms relating to those aspects. People with FTD may experience personality changes, lose the ability to use language properly, or develop motor-related issues like tremors, poor coordination, or muscle spasms.
The wide range of symptoms is what makes the disease so hard to diagnose, said Susan Dickinson, CEO of The Association for Frontotemporal Degeneration (AFTD), who was interviewed alongside Heming Willis on Today. Per the AFTD, it takes patients an average of 3.6 years to get diagnosed with FTD, because the disease shares so many symptoms with Alzheimer’s, Parkinson’s, depression, and psychiatric conditions.
As Heming Willis shares, receiving Willis’ FTD diagnosis felt like a “blessing and a curse, to sort of finally understand what was happening so that I can be into the acceptance of what is.” She noted that it “doesn’t make it any less painful, but just being in the acceptance and just being in the know of what is happening to Bruce just makes it a little bit easier.” When you know what the disease is from a medical standpoint, she continued, “it sort of all makes sense.”
In most cases, the exact cause of frontotemporal dementia is unknown, though 20 to 25 percent of patients share a genetic mutation that’s been linked to FTD, Dickinson said. However, more than half of the people who develop the disease have no family history of dementia, Mayo Clinic notes. There is currently no treatment or cure for FTD.
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Willis stepped away from acting in March 2022 due to aphasia, his family said at the time. Aphasia occurs when someone struggles with speaking, understanding, reading, or writing. His family shared the 68-year-old actor’s subsequent FTD diagnosis in Februrary 2023 in a statement via AFTD. “As Bruce’s condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research,” they wrote.
For Heming Willis, shedding the stigma around FTD is paramount, and why she chose to speak out during World FTD Awareness Week. “We’re a very honest and open household,” Heming Willis said of telling the couple’s two daughters, Mabel, 10, and Evelyn, 8, about Willis’ dementia. “It was important that we let them know what [the disease] is because I don’t want there to be any stigma or shame attached to their dad’s diagnosis or for any form of dementia.”
As for their family life now, Heming Willis says it’s “hard to know” whether Willis is aware of his decline or diagnosis, but that there are still moments of joy. “It’s really important for me to look up from the grief and the sadness so I can see what is happening around us,” she said. “Bruce would really want us to be in the joy of what is. He would really want that for me and our family.”
Before you go, read up on these celebs speaking out about their chronic illnesses:
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