Before Bruce Willis was formally diagnosed with frontotemporal dementia, his wife Emma Heming Willis began noticing troubling changes in his personality. The once warm and talkative actor grew quieter, less engaged, and even skipped out on family outings.
“For someone who is very talkative and very engaged, he was just a little more quiet,” Emma told Diane Sawyer in a preview of the ABC special Emma & Bruce Willis: The Unexpected Journey, which aired Tuesday on Good Morning America. “When the family would get together, he would kind of just melt a little bit. It felt removed, very cold, not like Bruce, who was very warm and affectionate.”
In March 2022, the family announced that Willis would step away from acting following an aphasia diagnosis. That was later clarified as frontotemporal dementia, or FTD, a disorder caused by damage to neurons in the brain’s frontal and temporal lobes. Symptoms can include unusual behavior, emotional changes, and difficulty with speech or movement, according to the National Institute on Aging.
Emma recalled the devastating moment the diagnosis was delivered. “On the day Bruce got his diagnosis, we left the doctor’s office with a pamphlet and a hollow goodbye. No plan, no guidance, no hope—just shock,” she told the crowd at the Women’s Alzheimer’s Movement Forum in May. “The future we imagined simply vanished, and I was left trying to hold my family together, raise our two young daughters, and care for the man I love while navigating a disease I barely understood.”
She admitted she felt “lost, isolated and scared,” wishing a doctor had reassured her that survival and growth were still possible. Today, Bruce remains physically healthy but is slowly losing his ability to speak. “The language is going,” Emma said, noting that the family has adapted new ways of communicating.
Still, moments of the old Bruce shine through. “It’s his laugh,” Emma said. “Sometimes you’ll see that twinkle in his eye, or that smirk, and I just get transported. As quickly as those moments appear, they go. It’s hard. But I’m grateful my husband is still very much here.”
Emma will release a memoir, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, in September. She described it as “the roadmap I wish someone had handed me on the day in 2022,” written for caregivers searching for support and answers. “I’ve had access to world-class experts because of who Bruce is, and I know that’s a privilege. I didn’t want to keep that information to myself.”
Bruce and Emma married in Turks and Caicos in 2009 and share two daughters, Mabel and Evelyn. The actor was previously married to Demi Moore for 12 years, and they have three daughters together: Rumer, Scout and Tallulah.