Emma Heming Willis Says Bruce Willis 'Is Still Very Much Here'

"Emma Heming Willis, wife to and carer of Bruce Willis, opened up to Diane Sawyer about what her life with the former movie star is like today. Willis was diagnosed with frontotemporal dementia in 2023. The disease affects the frontal and temporal lobes of the brain and causes memory loss, personality changes, and in Willis's case, aphasia. Willis retired from acting, and now Heming Willis has written a book about her new life, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path."

"The average age for frontotemporal dementia is 56, much younger than many other neurological conditions. Heming Willis said she noticed something was wrong when Bruno became withdrawn around his family. "For someone who was very talkative and very engaged, he was just a little more quiet," she says. "And when the family would get together, he would just kind of melt a little bit.""

""Bruce is still very mobile. Bruce is in really great health overall. It's just his brain that is failing him," Heming Willis says. "The language is going and we've learned to adapt. And we have a way of communicating with him, which is just a different way." He doesn't know what is happening to him. Heming Willis says Bruce Willis never "connected the dots" about his diagnosis and the aphasia he was experiencing."

Emma Heming Willis cares for husband Bruce Willis after his 2023 diagnosis of frontotemporal dementia, a condition that damages the frontal and temporal lobes and causes memory loss, personality changes, and aphasia. Early signs included withdrawal, reemergence of a childhood stutter, and emotional detachment. Physically, Bruce remains mobile and in generally good health, but his language ability has declined. He lacks awareness of his diagnosis and aphasia. Heming Willis has become his primary caregiver, adapted communication strategies to meet his needs, and authored The Unexpected Journey to describe caregiving challenges, resilience, and methods of daily adaptation.

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