Emma Heming Willis’ New Book Offers Empowering Roadmap for Caregivers (Exclusive)

When Bruce Willis was diagnosed with frontotemporal dementia (FTD) in late 2022 at age 67, his wife Emma Heming Willis walked out of the doctor’s office with nothing but a pamphlet and a sense of dread. While there was relief in understanding the cause of Bruce’s behavioral shifts that had upended family life, she was at a loss as to what to do next.

“Early on, I was very isolated, and it felt like what was happening was only happening to us,” Emma shares in this week’s PEOPLE cover story. “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.”

From her trauma, and after extensive guidance from experts, came her empowering new book, The Unexpected Journey, is a roadmap for families and families navigating neurodegenerative disease. “I wrote the book that I wish someone had handed me on the day we received the diagnosis,” says Emma, 49, who found strength in community as one of nearly 12 million people in the U.S. caring for a loved one with dementia. 

“Caregiving is hard, and there are many people doing it with little to no support … The only way I can get through this is to help someone else feel less alone.”

Read an exclusive excerpt from The Unexpected Journey, below.

I can’t pinpoint exactly when it started, it’s very gray, but at some point, our relationship began to feel off. There were conversations that I recalled differently than Bruce did, and there seemed to be a lot of miscommunications between the two of us. Sometimes I’d think, Is he for real? Is he pretending? Or am I going crazy? The disconnect was subtle but happening more and more.

Eventually, my patience began to run thin. I was often annoyed with Bruce, yet I knew nothing was more important to him than me and our family, so I found his behavior puzzling. But he didn’t mention anything was amiss and his doctors didn’t flag any health concerns with me, so I assumed everything must be okay. 

Nothing was more important to Bruce than being a father, and his devotion to his three girls was something I’d never seen before. I didn’t grow up with a dad who was present day to day like that. In fact, after my parents divorced, I went years without seeing my father. As I watched Bruce connect with his girls, I thought, That’s the kind of man I envision as the father of my future children. 

Bruce also made it a priority to have a good relationship with his ex-wife and her then-husband. Their cohesiveness was unconventional yet beautiful, and it was different from anything I had witnessed to date. 

Walking into Bruce’s world taught me a new definition of family and friendship. I’m eternally grateful to have it in my life. It’s also something ingrained in our young daughters, Mabel and Evelyn. I’m proud they get to witness it and be a part of such a solid and connected blended family.

I loved how Bruce ordered food at a restaurant. He would get a wide variety of appetizers and entrees because he wanted us to try a bite of everything. I loved that he understood the value of a good tip. “Always be generous,” he’d say. “I worked in the service industry and relied on those tips.” In fact, he was the most generous person I have ever met.

I loved that Bruce was a total gentleman. With Bruce, chivalry was not dead. I also loved how he supported the underdog. If a sports team was expected to lose, Bruce would put money on them.

I loved that he was so thoughtful. He’d get me flowers just because and leave Post-its around the house with love notes or words of encouragement.

I loved that Bruce always made sure I was comfortable and warm.

I loved that Bruce had long-standing relationships. Several friends from his struggling actor/bartending days are still very present in our lives, and Lety, the housekeeper he hired when he started earning a bit of consistent money in his late twenties, has worked with him (and then us) for 40 years.

Even though Bruce had experienced the milestones of childhood three times over with his older daughters, he embraced Mabel’s and Evelyn’s first words, first steps, first solid foods, and first days of school, among other moments like this, with the energy and excitement of a new father. Our girls felt seen, safe, and loved. “I’m much prouder of being a father than being an actor,” he’s been quoted as saying.

I loved how playful Bruce was with his daughters, especially our two young ones. If he came home and they were swimming in the pool, he’d dive in with his clothes on to get a laugh. His goal was to see our girls happy and having fun. All. The. Time. Let’s just say that if he’d been solely in charge of their lives, they would have had ice cream for breakfast and probably skipped a lot of school so they could sleep in and go to the beach or Disneyland. Bruce was also our rock during their most traumatic moments.

When Mabel fell and broke her jaw the day before her sixth birthday, Bruce held her all the way to the ER and paced outside the operating room until the doctor was done. If he could have been inside supervising the surgery, he would have been. And when Evelyn slipped on the ice in our driveway and split her chin open when she was three, Bruce drove us to the emergency room and cuddled her on his lap while they stitched her up. I can’t count how many times he asked the doctor, “Are you sure you numbed her enough?”

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I loved Bruce’s authentic passion for his craft and career. The fact that he could make a living from his dream job and provide a wonderful life for his family was a bonus. I was in awe of the aura around Bruce, one that had nothing to do with his movie star status. It’s hard to put into words, but he seemed to emanate this unique magnetic energy. You could just feel it radiating off him. 

When you were with Bruce, you felt you were in the presence of greatness, yet he was so simple and warm. He also had the best sense of humor. With Bruce, I was laughing from morning till night.

I loved that Bruce was a calm, sensitive and tender Pisces. And yet, when necessary, he’d make his presence known and boundaries clear,  especially when overzealous fans pushed me or the girls out of the way to get to him. Bruce didn’t raise his voice, but the authority and energy he brought to those moments was something to witness. A Bruce Willis glare would send chills up your spine. His demeanor was soft, but he drew hard lines when it came to protecting his family and our time together.

I loved Bruce’s strong self-confidence (where mine has always fallen short). He didn’t care what others thought of him. “When you lead with integrity and good intentions, you can’t let others’ opinions stop you,” he’d say. In less poetic moments, it was, “F— ’em, Emma.” That’s an affirmation I still use today.

When they say opposites attract, it couldn’t be more spot-on than in our relationship. Bruce was a rule breaker, while I’m a rule follower. Bruce was unpredictable, while I like control, a plan, and certainty.

Bruce kept me on my toes and showed me how to be nimble, to roll with life’s ups and downs. (Who knew how valuable those skills would become?) He also taught me to be spontaneous, something I still try to embrace for the sake of our young girls. While I’m a worrier, Bruce always found joy in life. He taught me how to “live it up,” as he would say, and do so to the absolute fullest. Bruce was a leader, and I was very comfortable with his take-charge personality. From watching him, I started to develop confidence of my own.

Most of all, Bruce was my protector. He always made me feel safe when things felt hard. “Don’t worry, Emma. Everything’s going to be okay,” he’d say when I was stressed or worried about something. Then he’d pull me close, wrap me in his arms, and kiss the top of my head. I would relax my shoulders and melt because I believed him. I could trust him. 

And he was usually right.

I could go on and on about the things I loved about Bruce and our life together, but what stops me in my tracks is having to use the past tense when he is alive. What a heart-wrenching gut punch. It’s a quiet ache I carry daily.

Today, I am navigating this adventure as a single parent, and it’s scary. For someone who likes control and predictability, I am dealing with a disease that is anything but. I know the details of your story are different, that your loved one is unique, that no two cases of FTD or dementia are alike. I know that no two caregiving journeys are the same either. But what I also know is that we share similar emotions watching our loved ones fade in front of our eyes, a traumatic experience that leaves a hole in your heart.

If you’re picking up this book, I’m guessing it feels like your world just fell apart, too. The path of dementia is not an easy one for you, your person, or your family. But I’m here to let you know that, in time, you will find your footing. You will build confidence. You will get to the other side. You’re able to handle a lot more than you think you can.

Your life will take on new shape, dimension and meaning in this next chapter, but you will find your footing and a way forward. I am telling you this because I’ve been there. You and I are connected by the same unfortunate, unchosen thread, but we are connected all the same.

Bruce is still a part of the fabric of my being and my guiding light, and I use the values we shared and the things he taught me to continue to make the best decisions for him and our family on his behalf and make each day the best it can be. I don’t always succeed, but I try. And I do so with my biggest supporter’s voice in my head: “You can do this, Emma,” he tells me. “And it’s going to be okay.”

I want to be that supporter for you because you can do this, too, and you are not alone. We’re walking this unexpected journey together.

Adapted from THE UNEXPECTED JOURNEY by Emma Heming Willis. To be published on September 9, 2025, by The Open Field, an imprint of Penguin Publishing Group, a division of Penguin Random House LLC. Copyright © 2025 by Emma Heming Willis.

The Unxpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path hits shelves on Sept. 9 and is available for preorder now, wherever books are sold.