Highlights:
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Emma Heming Willis describes Bruce Willis’ frontotemporal dementia (FTD) symptoms as first appearing like a “whisper.”
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The actor remains physically strong but struggles with language and communication.
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Heming Willis has written a book, The Unexpected Journey, on caregiving.
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She advocates for more support for families living with dementia.
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Emma Heming Willis has given an update on her husband Bruce Willis’ health, explaining how his frontotemporal dementia first appeared through subtle behavioural changes. In the ABC News special Emma & Bruce Willis: The Unexpected Journey, she said the Die Hard star remains physically healthy, but his mind is deteriorating. Heming Willis also discussed her new caregiving book and her efforts to support other families affected by dementia.
Bruce Willis’ Health Condition
Bruce Willis was diagnosed with frontotemporal dementia in 2023, a rare brain condition affecting behaviour, personality, and communication. Unlike Alzheimer’s, which often starts with memory loss, FTD can initially show through changes in behaviour and expression.
For Willis, best known for his roles in Die Hard and Armageddon, the main symptom has been the loss of language. “The language is going, and we’ve learned to adapt,” Heming Willis said, adding that the family now communicates with him in different ways. She described it as “his brain failing him,” while noting that his physical strength and mobility remain intact.
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Early Symptoms of Dementia
Heming Willis said the first signs of FTD were subtle and easy to overlook. She noticed that Willis, once warm and affectionate, started to withdraw emotionally and lost interest in family activities.
“It felt a little removed, very cold, not like Bruce,” she recalled. “To go the complete opposite of that was alarming and scary.” She described these early changes as a “whisper” that later became clearer symptoms of dementia.
Doctors confirmed the FTD diagnosis in 2023, but Heming Willis said she was given only a pamphlet and told there was no treatment available. She described the experience as feeling like she was “free falling.”
Coping as a Family
The Willis family has adjusted their lives around the illness. Initially, Emma Heming Willis tried to manage caregiving alone, staying awake at night to ensure his safety and limiting social outings to make his life easier.
Over time, she recognised the need for support. The couple’s daughters, Mabel, 13, and Evelyn, 11, still see glimpses of their father’s old self. “Not days, but we get moments,” she told Diane Sawyer. “It’s his laugh, his smirk, that twinkle in his eye. As quickly as those moments appear, they go. But I’m grateful he’s still here.”
His older daughters with Demi Moore—Rumer, 37, Scout, 34, and Tallulah, 31—also remain close and united. Rumer recently said the family is “doing great” and cherishing their togetherness.
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Advocacy and Book
Heming Willis, a model and entrepreneur, has become an advocate for dementia awareness. She is using her platform to call for greater support for caregivers, who are often overlooked.
Her book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, is set for release on 9 September. It recounts her experience and aims to guide others facing similar challenges. “Born from grief, shaped by love, and guided by purpose, this is the book I needed back when Bruce was first diagnosed,” she said.
