Emma Heming Willis says she still wrestles with guilt as she looks back on the return of a “debilitating” childhood condition Bruce Willis had spent years keeping under control – never imagining it could be linked to dementia.

Since Bruce Willis’ family revealed he was diagnosed with frontotemporal dementia (FTD) in 2023, his wife Emma has become one of the condition’s most vocal advocates, sharing not only the realities of his illness but also the emotional toll it has taken on their family.

Speaking on Today’s Making Space with Hoda Kotb just one day before the 27th anniversary of The Sixth Sense, Emma admitted that even celebrating her milestone 50th birthday wasn’t easy.

“I have not really been in the celebratory feelings of late,” she told the host on Aug. 5. “I was unsure if I really wanted to do anything. But I had a friend of mine who kept sort of pushing and saying, ‘You know what? You don’t wanna miss out on your 50th. You have to celebrate in some form or fashion.’”

‘What would my husband want for me?’

After taking time to think about it, Emma realized she didn’t want to look back with regrets.

“I really sat with that, and I thought about it. And I thought, ‘You know what? I don’t wanna look back and think, why didn’t I celebrate 50?’ It is something to celebrate.”

She ultimately celebrated the occasion with family and close friends but admitted the emotions surrounding Bruce Willis’ illness never completely fade.

“I always wrestle with it, you know?” she said. “I think guilt is something that I am always carrying, but I’ve learned that it is really not helpful. What I know is I always go back to what would my husband want for me?”

It’s not Alzheimer’s

Emma has also spent much of her time trying to educate people about FTD, explaining that it doesn’t always look the way many expect.

During an appearance on The Bossticks podcast in June, she addressed one of the biggest misconceptions she regularly encounters when people ask about her husband.

“When people say, ‘Oh, you know, does he remember who you are?’ Well, he does because he doesn’t have Alzheimer’s; he has FTD,” she said. “I think that’s a very common misconception that, when you think of dementia, we think of memory loss.”

Instead, Emma explained that one of the earliest changes she noticed had nothing to do with Bruce forgetting names or faces.

It was something far more familiar.

A childhood struggle returned

According to People, his dementia symptoms “started with language.”

“For Bruce, it started in his temporal lobes and then has spread to the frontal part of his brain. It attacks and destroys a person’s ability to walk, think, make decisions,” Emma explained.

“As his language started changing, it [seemed like it] was just a part of a stutter, it was just Bruce,” she said in 2024. “Never in a million years would I think it would be a form of dementia for someone so young.”

While Emma first spoke about Bruce’s lifelong stutter the year after his diagnosis, she has now shared new details about how it resurfaced as his condition progressed.

‘Debilitating’ stutter

During her conversation with Kotb on Aug. 5, Emma revisited those early changes and revealed that the speech difficulties were tied to a severe stutter Bruce had struggled with as a child.

“I started noticing a stutter that he had had, a severe stutter, that was quite debilitating for him as a young child,” she said.

“It started to come back. It’s not that his stutter wasn’t there throughout his life. He just sort learned to manage it. But then I started noticing that he was not managing it anymore,” the former model shared.

She added, “It was very odd for someone who is such an incredible communicator to all of a sudden not be one. And never in my wildest dreams did I think that was an early symptom of the diagnosis he received years later.”

Emma Heming Willis has turned one of the most difficult chapters of her life into a mission to help others.