Bruce Willis’ wife Emma Heming Willis reveals the ‘really traumatic’ way they got actor’s dementia diagnosis

Bruce Willis’s family learned about his frontotemporal dementia in 2022

Bruce Willis’s wife, Emma Heming Willis, has described the painful way she learned about her husband’s dementia diagnosis.

The 70-year-old actor’s family announced in 2023 that he was diagnosed with frontotemporal dementia (FTD), only a year after they said he was “stepping away” from acting because he had aphasia.

Now, Heming Willis is reflecting on her husband's health journey, recalling the shock she felt in November 2022 when a neurologist told her that he had FTD.

“I’m sure the doctor was explaining what FTD is, [but] I couldn’t hear a single thing,” she said in a new interview with People. “I had pins and needles going through my body. My ears were wafting. I’m sure he was feeding us information but all I heard was just, ‘Check back in and here’s a pamphlet.’”

Although Heming Willis was relieved to have an official diagnosis, she didn’t know how to handle this news.

Emma Heming Willis recalls shock of learning her husband Bruce had FTD (Getty Images)

“I was grateful to get a diagnosis, but there is no cure for this disease, and being sent on our way with no support, no nothing was really traumatic,” she explained. “It’s not just happening to us. This is how many people are receiving their diagnosis.”

From there, Heming Willis decided to do her own research about FTD — a rare form of dementia that affects only around one in 20 people with the condition.

The model eventually found a way to move forward, speaking with experts about FTD and finding a community of people to talk to about becoming a caregiver.

“Early on, I was too scared to say anything to anyone. It felt like what was happening was only happening to us," she said. "Over time, I realized it would be beneficial to talk about it and raise awareness so people get to the doctor sooner, can be diagnosed sooner, get into clinical trials.”

Heming Willis previously opened up about the isolating nature of her husband’s shocking diagnosis in an interview with Diane Sawyer on the ABC special Emma & Bruce Willis: The Unexpected Journey. She said that when she stepped in to become Bruce’s 24/7 caregiver, she limited her daughters’ activities in the house, such as playdates and sleepovers, which presented a different set of challenges to navigate.

“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. You know, the girls were isolated too, and that was by design, I was doing that,” Heming Willis explained.

Willis’s family recently made the decision to move the actor to his own one-story house near the main property.

With her husband — to whom she has been married since 2009 — requiring “a calm and serene atmosphere,” Heming Willis told People the new home is more conducive to his needs.

“We have two young children, and it was just important that they had a home that supported their needs and that Bruce could have a place that supported his needs... The kids can have playdates and sleepovers [again] and not have to walk around tiptoeing,” Heming Willis said of the family’s arrangement.

“Everything just feels a lot calmer, more at ease now.”