‘Hard to know’ if Bruce Willis is aware of dementia

Bruce Willis’ wife, Emma Heming Willis, gave an update on his condition Monday as a part of Frontotemporal Dementia Awareness Week.

“Dementia is hard,” Heming Willis, 45, told TODAY’s Hoda Kotb. “It’s hard on the person diagnosed, it’s also hard on the family. And that is no different for Bruce, or myself, or our girls. When they say this is a family disease, it really is.”

Heming Willis was joined by CEO of the Association for Frontotemporal Degeneration, Susan Dickinson, during the appearance.

According to Heming Willis, it is unclear if her ailing husband is actually aware of what is going on regarding his condition.

“It’s hard to know,” she said, holding back tears.

According to Dickinson, brain disease affects everyone differently. Some people manage to retain a semblance of self-awareness while others lose it imminently.

“What we know is, obviously the disease can start in the frontal or the temporal lobes,” explained Dickinson. “And one of the things that the frontal lobe controls is self-insight.”

“So we really don’t know some people that’s the first thing they lose is any understanding that they themselves have changed,” she continued. “And other people retain that for a long time.”

Kotb, 59, then asked how Heming Willis, who has two small children with the “Pulp Fiction” star, and her family are coping with the diagnosis.

“We’re a very honest and open household,” she said. “And you know, the most important thing was to be able for us to say what the disease was, explain what it is because when you know what the disease is, from a medical standpoint, it sort of all makes sense.”

She added: “So it was important that we let them know what it is because, you know, I don’t want there to be any stigma or shame attached to their dad’s diagnosis or for any form of dementia.”

The couple are parents to daughters Mabel, 11, and Evelyn, 8. The actor is also dad to daughters Rumer, 34, Scout, 31, and Tallulah, 29 whom he shares with ex-wife Demi Moore.

On Monday, Dickinson revealed that many doctors are unfamiliar with Frontotemporal Dementia due to the fact it is “less common” than other memory loss diseases.

“Most doctors aren’t familiar with it,” claimed Dickinson. “So it can take almost four years for people to get diagnosed on average. And as you say, they accrue many misdiagnoses along with often depression, bipolar disease, Alzheimer’s or even somebody with some of the movements symptoms.”

According to Heming Willis, she believes herself to be more of a “care partner” rather than a “caretaker.”

“It’s important for care partners to look after themselves so that they can be the best care partner for the person they’re caring for,” she said.

Heming Willis later added that her husband, despite his constant struggle, is “the gift that keeps on giving” and he’s taught their children all about “love, patience and resilience.”

Heming and Willis, 68, tied the knot in March 2009 before renewing their vows in 2019.

In March 2022, Willis’ family publicly revealed that he’d been diagnosed with aphasia, a condition that affects a person’s language processing and communication abilities.

Willis also stepped away from acting at the time.

Heming Willis said that the diagnosis has been a “blessing and the curse.”

“To finally understand what was happening, so that I could be into the acceptance of what is,” she said on TODAY. “It doesn’t make it any less painful, but just being … in the know of what is happening to Bruce makes it a little easier.”