When Bruce Willis, one of the world’s most recognizable actors, was diagnosed with frontotemporal dementia in 2022, it brought increased attention both to the disease, which is often known as FTD, and to other forms of dementia. As part of that attention, the experiences of Willis’ family began to fall into the public eye, too.
On Sept. 9, Emma Heming Willis, Bruce’s wife, released “The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path,” a book not only about her husband’s experiences with dementia but about her experiences as a caregiver and about the experiences of caregivers around the world.
Heming Willis called her book “a guide to caring for the caregiver” and an effort to help remove the stigma that surrounds dementia. Heming Willis’ book was released during World Alzheimer’s Month and a couple weeks before FTD Awareness Week, which runs from Sept. 21 to Sept. 27. The book and its subject have attracted widespread media attention.
The very public nature of the struggle of Bruce Willis and his family with dementia is helping to bring much-needed attention and empathy to the more private struggles that millions of Americans face every day – struggles that the residents of senior living communities, their families and the senior living industry’s professionals know all too well. As Dr. Bruce Miller, a behavioral neurologist and FTD expert, recently told ABC News in a feature about Willis and his family, dementia “is the disease of our age.”
“This isn’t about me or Bruce, it’s way bigger than that,” Heming Willis recently said on social media. “It’s about raising the voices of caregivers, breaking the stigma around dementia, and shining a light on what millions of families face every day, often with little to no support. The intention of ‘The Unexpected Journey’ is to remind caregivers (and the families and friends around them) that caregivers need care too.”
Heming Willis launched the book a day ahead of its release date with a conversation with Anderson Cooper in Somerset, New Jersey in front of an audience of 300 caregivers, who each received an advanced copy. The event included speakers such as psychologists, financial planners and lawyers sharing guidance on a range of issues for caregivers.
Cooper told the crowd, “I feel like we’re sitting in a room of heroes,” according to a MarketWatch article about the event. The AARP says there are approximately 63 million caregivers in the U.S., including about 11 million caring for someone with dementia. FTD affects about 60,000 people in the country, according to the Association for Frontotemporal Degeneration.
Heming Willis has credited doctors and her adult stepdaughters from Willis’ previous marriage to Demi Moore with helping her to begin to pay more attention to herself and her own needs and mental health.
Heming Willis said on Instagram that it took her time to realize that she had agency and could be an active participant in the experiences that her husband and the rest of her family had with his disease.
“I didn’t want Bruce’s FTD diagnosis to take all of us with it, because dementia is a family disease,” she said. “So I made a choice to pump air back into our lives for the sake of our daughters, for Bruce, and for myself. For me, one path has been advocacy.”
Heming Willis said working to shine a light on caregivers and the challenges that they face has been rewarding on multiple levels.
“Supporting other caregivers and families living with dementia has given me purpose and connection, which I desperately needed,” said Heming Willis, who often tailors direct messages to caregivers in her social media posts. “If you’re in the thick of it, I know this might sound impossible. But I want to gently offer this: In time, you too will find something that feels purposeful. Something that breathes a little life back in.”
Willis’ fame has brought a spotlight to what most families face more privately, and Heming Willis emphasizes in interviews and elsewhere that she has access to financial resources that make her experience much different than many others. Willis can live in a second home that is staffed with professional care around the clock. That decision received public scrutiny and some criticism. Heming Willis shares her decision-making process in her book, including concerns for her two young daughters. For instance, noise – such as the kind common among children – proved discomforting and disruptive to Willis in his condition.
“I wanted to do the safest thing for him and our two kids. That’s my priority. He’s doing so well. His needs are met 100% of the time,” she said at the New Jersey event. “I know it raises eyebrows. I am braced for it. You have to do what’s right.”
“The Unexpected Journey” debuted at No. 2 on the New York Times Bestseller list, and Heming Willis has been interviewed and featured in a wide range of media outlets. Near the launch of the book, Heming Willis expressed some discomfort with the media attention the book was poised to receive, knowing some of the coverage may be “noisy for all the wrong reasons.” However, she said she appreciated the awareness that the book’s time in the spotlight should bring to the issues that caregivers must manage. She said that despite the millions of caregivers in the U.S., the issues they face often are overlooked and misunderstood.
Among the most notable media coverage surrounding the book was an ABC News special with Diane Sawyer. Heming Willis told Sawyer that she first suspected something could be wrong with her husband’s health when he uncharacteristically seemed to withdraw from her and his children and to generally show indifference to other people.
Today, Heming Willis said that her husband no longer can communicate with language, though he is mobile and physically healthy. His inability to recognize potential risks around him makes it critical to ensure he is never alone.
“The sadness, grief, resentment is a common thread we all share,” Heming Willis said during the ABC News special of her and her fellow caregivers.
Heming Willis is among many today who are helping to improve awareness of the challenges that come with it and its growing impact.
“I have found strength in becoming an advocate for other caregivers for people living with dementia,” Heming Willis said in a social media message to caregivers. “And if you would have told me early on that I would find joy and meaning and purpose on this journey, I would have thought that you were absolutely nuts, because all I knew and all I felt early on was just darkness and sadness and grief and anger, and no one ever told me otherwise that I would find cracks of joy and light along the way. And if no one has told you that, I want to be able to tell you, it took a minute, but I did find something that really feeds my soul, and I hope in time, when you are ready, you will find something that does the same for you.”