Emma Heming, Bruce Willis’ wife, preps guidebook for caregivers: ‘Building a support community has been vital’

Bruce Willis has been ill for nearly two years. The 68-year-old actor, known for action classics like Die Hard and Armageddon, decided to retire from making movies due to aphasia, announced his family in March 2022. A year later, they revealed that he also suffers from dementia. “There are no treatments for the disease, a reality that we hope can change in the years ahead,” said the Willis family in a statement. Willis has been cared for by his family, primarily his wife Emma Heming, with whom he has two daughters, Mabel and Evelyn. He also maintains a loving relationship with ex-wife Demi Moore and their three daughters: Rumer, Scout and Tallulah. Heming recently announced that she is writing a book to be published next year about caring for loved ones with dementia. The 45-year-old former model now runs a health and wellness platform for women called Make Time Wellness.

The book is set to be published sometime in 2025 by The Open Field, an imprint founded by Maria Shriver, a journalist and former first lady of California who was married to Arnold Schwarzenegger for 25 years. The Open Field is part of Penguin Random House.

The volume will draw from Heming’s personal experience, interviews and expert advice. It offers an inspiring guide for people caring for a loved one with dementia. Heming announced the book on Maria Shriver’s Sunday Paper website, saying, “I am grateful for this unique, healing, and important opportunity to use my voice to raise awareness, encourage, and support others.” She wants the book to be read by “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... I want this book to feel like a warm hug because that is what we need throughout this whole journey.”

In her book announcement, Heming shared that “knowledge is power... building a community of support around me has been vital” in caring for Willis. “It has brought stability and a certain amount of control back, control that was completely shattered when the diagnosis of frontotemporal dementia first came into our family’s world. Dementia not only affects your loved one but can shake a whole family’s foundation, and self, if you allow it. Identifying the right resources to educate and enlighten myself has been powerful and has allowed me the space to continue to move forward in the most positive way so that I can be the best mother, wife, daughter, friend, and care partner. I want to be able to share that with the next person who finds themselves here.”

The actor’s family occasionally shares recent photos, including one with Demi Moore and their daughter Tallulah celebrating her 30th birthday. Although Heming hasn’t spoken much about her husband’s illness, she gave an interview last September during World Frontotemporal Dementia Awareness Week. Through tears, she admitted it’s difficult to know if Bruce is aware of his condition. “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... But to finally understand what was happening — 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.”

The actor’s initial aphasia affected his speech, but the dementia is now making it worse. Willis, a new grandfather, rarely goes outside now because he’s always chased by paparazzi. Hemingway would plead for them to stop yelling to get his attention, jeopardizing his safety.

Sign up for our weekly newsletter to get more English-language news coverage from EL PAÍS USA Edition