Actor Bruce Willis and his wife Emma Heming Willis at the New York film festival in 2019. She is working on a guide to caregiving that draws upon her experiences tending to her husband who has been diagnosed with frontotemporal dementia. Photograph: Charles Sykes/Invision/AP
https://www.theguardian.com-Announcing her untitled book, set to be published in 2025, Emma Heming Willis recalls having ‘close to no resources or support’ after her husband’s diagnosis
By Sian Cain
Bruce Willis’ wife Emma Heming Willis is set to publish a book about her experience as a caregiver to her husband after he was disagnosed with frontotemporal dementia.
The untitled book, which will be published in 2025 by Maria Shriver’s publishing imprint the Open Field, will “offer a thoughtful, inspiring guide for those seeking support while navigating a loved one’s dementia.”
“For many people, their first touch point about this disease is received in their doctor’s office,” Heming Willis said in an interview with Shriver’s newsletter the Sunday Paper. “I think it’s very important how this information from doctor to patient and loved one is relayed. Having resources and information readily available is imperative. I know between my experience and other care partners that I have spoken to; our stories are unfortunately similar. We left that office with close to no resources or support and with a diagnosis that I could hardly pronounce.”
Willis’ condition was first made public in March 2022, when his family announced he would be retiring from acting due to aphasia, a disorder that causes difficulty with language or speech. A year later, it was announced that he had been formally diagnosed with frontotemporal dementia (FTD). Symptoms of FTD include emotional problems, trouble communicating, struggles with walking and difficulty working, according to the National Institute on Aging.
When his diagnosis was made public, actors and directors who worked with Willis revealed they had been quietly voicing their concerns about his cognitive state for years, as he struggled to remember dialogue, needed lines rewritten to be shorter, expressed confusion at his surroundings and required shortened work days. The Razzie awards, which recognise the worst films and performances and had created a prize just for Willis’ many appearances in films in 2021, withdrew the category after his condition was revealed.
In September, Heming Willis revealed she had become Willis main caregiver and said it was “hard to know” if the 68-year-old actor fully understood his diagnosis.
On Monday, Heming Willis told the Sunday Paper that she has “so much more hope today than I did after Bruce was first diagnosed. I understand this disease more now, and I’m now connected to an incredible community of support. I have hope in having found a new purpose – admittedly one I never would have gone looking for – using the spotlight to help and empower others.”
She said she hoped her book would help “care partners, but especially new care partners, who have just received this life-changing news … they should know they are not alone and there is support, even hope. In a perfect world, I envision this book in that doctor’s office, and he or she, puts it in their hands to bring home.”
Heming Willis and Willis married in 2009 and have two daughters together.