‘FTD doesn’t scream, it whispers’

Since learning of husband Bruce Willis’s frontotemporal dementia (FTD) diagnosis in 2022, Emma Heming Willis has been navigating the grief of it all. Emma, 47, whose new book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, comes out on Tuesday, was unsure how to process the newfound information. She knew that protecting the privacy of Bruce and their two daughters, Mable, 13, and Evelyn, 11, was of utmost importance. Aside from that, she felt lost.

“Early on, I was very isolated. I was too scared to say anything to anyone,” Emma told People for the magazine’s September cover story. “I was in so much sadness and darkness for so long.”

Bruce, now 70, was first diagnosed with primary progressive aphasia, a communication disorder that impairs the understanding and expression of language, in early 2022. By the time he was diagnosed with frontotemporal dementia in November of that year, Emma had already taken on the role of full-time caregiver. In May, she was honored with the Caregiving Award by Maria Shriver’s Women’s Alzheimer’s Movement at Cleveland Clinic.

“FTD doesn’t scream, it whispers,” Emma told People. “It’s very gray to know where Bruce stopped and where his disease kicked in … I started noticing his stutter started to come back [and] conversations weren’t really aligning anymore. It was hard to put my finger on why and what was happening.”

Emma eventually turned her pain into purpose. Devoting herself to FTD advocacy, the mother of two sought guidance from experts and found comfort in community. There are approximately 50,000 to 60,000 people with the rare form of dementia in the United States, according to the University of Pittsburgh Medical Center.

“Over time, I realized it would be beneficial to talk about it and raise awareness so people get to the doctor sooner, can be diagnosed sooner, get into clinical trials,” she told the magazine. “FTD gets misdiagnosed all the time as bipolar, midlife crisis, depression. It is just not on anyone’s radar, which is why I think coming out with Bruce’s diagnosis was so important.”

With The Unexpected Journey, Emma provides a road map for families like hers that are navigating the complexities of life with a neurodegenerative disease. The intention behind the book, she told People, is to provide the support she wishes she had.

“I was grateful to get a diagnosis, but there is no cure for this disease, and being sent on our way with no support, no nothing was really traumatic,” she told People. “It’s not just happening to us. This is how many people are receiving their diagnosis.”

Emma added, “I wrote the book that I wish someone had handed me on the day we received the diagnosis.”

The Willis-Moore family, which includes Bruce’s ex-wife, Demi Moore, their daughters, Rumer, Scout and Tallulah, as well as Bruce’s daughters with Emma, publicized the news of the Die Hard star’s frontotemporal dementia diagnosis in February 2023. In a joint statement, also shared by the Association for Frontotemporal Degeneration, the family expressed gratitude for the public’s continued support, as well as their hope to raise more awareness and inspire additional research on the “cruel disease.”

“Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately. We know in our hearts that — if he could today — he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families,” part of the statement reads.

Emma married the Pulp Fiction actor in 2009, after first meeting at a mutual personal trainer’s gym in 2007. They made their red carpet debut in 2008, when Emma joined Bruce, Moore and their daughter Tallulah for the premiere of his film Flawless. That wouldn’t be the last time the former model would join her blended family’s celebrations: In 2019, Emma celebrated the release of Moore’s memoir, Inside Out, alongside Bruce and her stepdaughters, Rumer, Scout and Tallulah.

During a Sept. 2 appearance on The Oprah Podcast, Moore praised Emma’s strength in helping Bruce navigate his battle with FTD.

“I have so much compassion for Emma in this, being a young woman,” the Substance star said. “There’s no way that anybody could have anticipated where this was going to go. And I really think she’s done a masterful job. She has been so dedicated to forging the right path. She’s had equal amounts of fear and strength and courage in navigating this.”