Emma Heming Willis dismisses 'loud' opinions about caregiving experience
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Emma Heming Willis opened up in interviews this week about the difficult decision to move Bruce to a separate, one-story home with 24-hour care nearby.

NEW YORK — Emma Heming Willis shared her thoughts Friday on the public response to her emotional interviews this week about her husband Bruce Willis’ battle with frontotemporal dementia.

The 49-year-old author and advocate shared her thoughts on the coverage following her candid conversations with ABC News’ Diane Sawyer, which aired earlier this week in the special “Emma & Bruce Willis: The Unexpected Journey.”

“I think that they did a beautiful job with amplifying FTD awareness, as well as shining a spotlight onto caregivers,” she said in the video after acknowledging she wanted to wait a few days to respond after the interview aired Tuesday. “What I knew is that by sharing some of our intimate information that we would see these two camps. It would be people with an opinion versus people with an actual experience.”

During those interviews, Heming Willis had opened up about the most intimate details of their family’s journey since the legendary actor’s dementia diagnosis, including the difficult decision to move Bruce to a separate, one-story home with 24-hour care nearby.

“It was one of the hardest decisions that I’ve had to make so far but I knew first and foremost Bruce would want that for our daughters,” she had told Sawyer. “He would want them to be in a home that was more tailored to their needs, not his needs.”

Heming Willis said the comment section of the interview played out how she expected, with many showing “how quick they are to judge the caregiver. And that is what caregivers are up against, judgment from others and criticism from others.” 

The emotional interviews revealed that while the 70-year-old “Die Hard” star remains in “really great health overall,” his brain “is failing him” as his condition progresses. Heming Willis described how Bruce’s language abilities are declining, though she treasures the moments when glimpses of his former self still shine through.

“It’s his laugh, right? Like, he has such a hearty laugh and you know sometimes you’ll see that twinkle in his eye or that smirk and you know, I just get like transported and it’s just hard to see because as quickly as those moments appear then it goes,” she had said tearfully.

Bruce Willis retired from acting in 2022 after he was first diagnosed with aphasia, which was later determined to be frontotemporal dementia (FTD). The degenerative brain disorder is estimated to impact around 60,000 people in the U.S. and is one of the most common forms of dementia for people under age 60.

Heming Willis, who married Bruce in 2009 and shares two daughters with him, has become a vocal advocate for FTD awareness and caregiver support. Her book “The Unexpected Journey: Finding Strength, Hope, and Yourself on The Caregiving Path” is set to be released on September 9.

She shared a passage from her book, recounting what a therapist told her: “Nothing changes an opinion quite as powerfully as when you have an experience. Even if someone is closely familiar with dementia or the condition you are caring for, they aren’t in your home, so they don’t know how your person is behaving or your family dynamics.”

“The truth is that the opinions are so loud and they’re so noisy,” she continued. “But if they don’t have the experience of this, they don’t get a say, and they definitely don’t get a vote.”

The family has largely kept Bruce’s condition private since his diagnosis, with rare public updates about his health. Heming Willis has previously used social media to address speculation about her husband’s condition and to advocate for better understanding of dementia and caregiving challenges.

During her interview with Sawyer, she described their current living situation as filled with love despite the challenges. “It is a house that is filled with love and warmth and care and laughter,” she said of Bruce’s care home. “It’s been beautiful to see how many of Bruce’s friends continue to show up for him and they bring in life and fun.”

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