Before Bruce Willis’ family had any idea that he was suffering from an aggressive form of dementia, which tends to strike otherwise healthy people in their 50s and 60s, his wife, Emma Heming Willis, noticed changes in his personality.
During a lengthy interview with ABC News’ Diane Sawyer Tuesday, Heming Willis said the changes were subtle at first but they soon became “scary and alarming” and made her wonder if their marriage would survive. She said the “Die Hard” star started to become “removed” and “cold” before he was eventually diagnosed with frontotemporal dementia (FTD) in 2023.
“For someone who was very talkative and very engaged, he was just a little more quiet,” shared the former model-turned activist and author. “When the family would get together, he would just melt a little bit.”
Actor Bruce Willis greets his wife Emma Heming as she arrives on the red carpet before the British premiere of “A Good Day to Die Hard” at Leicester Square in London February 7, 2013.
“It felt a little removed, very cold, not like Bruce, who was very warm and affectionate,” Emma continued. “To go the complete opposite of that was alarming and scary.”
But such personality changes in a middle-aged person can be an early sign of FTD, according to Dr. Bruce Miller, a neurology professor at UC San Francisco who is a leading global expert in this type of neurodegenerative disease. Miller, who also directs UCSF’s Memory and Aging Center, is not Willis’ doctor but he has begun working with Heming Willis on her FTD advocacy and appeared on the ABC News special to provide context to the actor’s symptoms and his condition.
Regarding Heming Willis’ observations about her husband’s personality changes, Miller told ABC: “Imagine a marriage that has been tight and beautiful and suddenly the person that you’re living with has no empathy or concern for you or your family.”
Miller said these personalty changes might initially be attributed to a psychological issue, but he would immediately suspect that they could be caused by a “disturbance” in the brain related to dementia. FTD is known to slowly destroy the temporal and frontal lobes of the brain which play a significant role in decision-making, behavioral control, emotion and language, according to UCSF’s Memory and Aging Center.
FTD is the most common cause of dementia in people under 60 — at a time when people might be thriving in their careers or busy with family. People with FTD suddenly start to decline in ways that people find “very unsettling and mysterious,” Miller said in another interview in May.
Unlike Alzheimer’s disease, the most common form of dementia, FTD patients don’t lose their memory but instead undergo gradual and steady changes in personality and behavior. The earliest changes typically include inappropriate social behavior, loss of empathy or sympathy and impulsivity, including sudden addictive behavior, making it hard for families and loved ones to deal with, according to Miller.
The majority of people with FTD also struggle to find words and to express themselves. Willis was initially diagnosed with aphasia when he family announced in 2022 that he was stepping away from his acting career.
Heming Willis told ABC News that her husband’s “language is going, and we’ve learned to adapt.” She said the family has found “a way of communicating with him, which is just a different way.”
In the interview, Heming Wilis also revealed that her husband has been moved into a separate home, away from her and their two daughters, Mabel, 13, and Evelyn 11. Having him live separately was “one of the hardest decisions” she’s had to make during her two years as her husband’s caregiver, but she said she made the choice both for Willis and for their children.
Heming Willis said she was working 24/7 to care for him and keep him safe in their home, while having to limit activities like playdates and sleepovers for their daughters.
“I didn’t know if parents would feel comfortable leaving their child at our home, so, again, not only was I isolated, I isolated our whole family,” Heming Willis said. “You know, the girls were isolated too. … It was a hard time. It was a really hard time.”
Heming Willis believes that her husband would agree with her choice to move him to a place where he has full-time caregivers. “Bruce would want that for our daughters,” she said. “He would want them to be in a home that was more tailored to their needs, not his needs.”
Willis’ one-story home happens to be near the family home, and Heming Willis and their children visit him “a lot” to have breakfast or dinner with him. Willis’ ex-wife, Demi Moore, and the three adult daughters they share, Rumer, 37, Scout, 34, and Tallulah, 31, also are regular visitors.
There is no cure for FTD and no way to reverse the damage it causes to a person’s brain, though Miller is working on finding new treatments with his team of scientists at UCSF. Heming Willis has become an advocate for his research, while she faces a grim reality. Patients with FTD live an average of five to eight years after diagnosis, with the disease continuing to cause a steady decline in their ability to think and function. The disease itself is not fatal but it leads to complications, such as swallowing problems that can cause pneumonia.
Right now, Willis is “very mobile” and in good physical health, Heming Willis said. “Bruce is in really great health overall, it’s just his brain that is failing him,” she said.
Heming Willis shared her story with ABC News to promote her memoir, detailing her journey to care for Willis. “The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path” will be released Sept. 9.
