Bruce Willis showed signs of decline years before his aphasia diagnosis — but another condition he’d had since childhood kept wife Emma Heming Willis’ concerns at bay.
Willis’ family in 2022 announced the “Die Hard” star would retire from acting after being diagnosed with a cognitive disorder. The next year, they revealed a more specific diagnosis: frontotemporal dementia (FTD), which affects an estimated 50,000 to 60,000 Americans and is marked by a gradual, progressive decline in behavior, language and occupational functioning.
“For Bruce, it started with language,” Heming Willis told Town and Country in an interview published Tuesday. But those early changes in the Emmy winner’s speech didn’t initially alarm her, she said, as he struggled with a “severe stutter” well into his teenage years.
“Bruce has always had a stutter, but he has been good at covering it up. As his language started changing, it [seemed like it] was just a part of a stutter, it was just Bruce,” the former runway model said. “Never in a million years would I think it would be a form of dementia for someone so young.”
“I could hardly talk. It took me three minutes to complete a sentence,” Willis is quoted as saying in “Bruce Willis: The Unauthorized Biography,” published in 1997. “Yet, when I became another character, in a play, I lost the stutter. It was phenomenal.”
It was that discovery that “propelled him into acting,” Heming Willis — who in 2016 presented her husband with an award from the American Institute for Stuttering — told Town and Country.
Willis, who was 67 at the time of his diagnosis two years ago, is currently “stable” in his battle with the disease, his ex-wife Demi Moore said earlier this month. People with FTD can live with the disease for years, but there is no cure and sufferers face an increased risk of falls, infections and diseases including pneumonia, which can be fatal, according to Johns Hopkins Medicine.
Wendy Williams, the 60-year-old former talk show host who went off the air in 2022, was diagnosed earlier this year with aphasia and FTD. The Lifetime docuseries “Where Is Wendy Williams?” chronicles her cognitive deterioration with “radical honesty,” the series’ executive producer Mark Ford told The Times in February.
Heming Willis told Town and Country that she’s “never tried to sugarcoat” Willis’ condition for their two young daughters, ages 10 and 12.
“What I learned from our therapist was that if children ask questions, they’re ready to know the answer,” she said. While the girls don’t understand all the details, she added, they know “Daddy’s not going to get better.”
With the help of Willis’ eldest three children, whom the former actor shares with Moore, Heming Willis said she works diligently to raise awareness of FTD. She previously supported New York state Sen. Michelle Hinchey — whose father had primary progressive aphasia frontotemporal dementia — in creating an FTD registry, “so that when anyone in the state of New York is diagnosed, it gets recorded.”
She’s also working on a book for caregivers, which she first announced in February.
“It’s not just about how to care for your loved one, it’s about how to look after yourself in the process,” the FTD advocate said. “All these experts and clinicians who have helped me find my own footing in this have said, ‘You cannot be a caring partner for your loved one if you are not caring for yourself.’ ”
Heming Willis called the untitled work “the book that I wish I had been handed when we got the FTD diagnosis.”
“I wish I had heard from someone, like, ‘I know this feels horrible and very traumatic, but you’re going to be OK,’ ” she said.