Bruce Willis's wife, Emma, shares update on actor's 'devastating' dementia diagnosis

"His diagnosis enabled us to put things that once felt so confusing into a medical context," Emma writes.

Bruce Willis and Emma Heming Willis in 2019. The model shared an update about the actor's FTD diagnosis.
Bruce Willis and Emma Heming Willis in 2019. The model shared an update about the actor's FTD diagnosis. (Lev Radin/Pacific Press/LightRocket via Getty Images)

Bruce Willis's wife, Emma Heming Willis, is opening up more about the actor's dementia diagnosis and their family's "difficult chapter." In an essay for Maria Shriver's Sunday Paper site, Emma reflected on six lessons she has learned since publicly sharing the news earlier this year that the 68-year-old Die Hard star had been diagnosed with frontotemporal dementia (FTD).

"Bruce's FTD diagnosis was devastating, but it explained so much of what we'd been going through," the model revealed under the first lesson, "there's strength in community."

"His diagnosis enabled us to put things that once felt so confusing into a medical context," she wrote. "Once we learned Bruce was living with FTD, we were able to find specific information to help us understand the disease, which ultimately helped us support Bruce in more helpful ways. With a specific diagnosis, you have a chance to find a community. You get to connect with people who understand your story immediately. You don't even have to explain yourself."

FTD is the second-most common form of young-onset dementia, and as Emma noted, it can strike at any age. That's why lesson No. 2 — "never underestimate the power of awareness" — is so crucial.

"As hard as it was to come forward about Bruce's FTD diagnosis, I knew I needed to raise my voice to bring awareness to this disease," she explained. "The world needs to know that not all dementia is Alzheimer’s and that not all dementia impacts memory. A disease like FTD presents instead with changes to behavior, personality, language, or movement."

Emma declared the Willis family goal is "to see an end to FTD." Throughout the process, she said she has learned a third lesson: that "research is at a pivotal moment."

"The first disease-modifying treatments for FTD are in clinical trials right now, actively recruiting participants. Now is the time for our community to take action to end this disease," she stated.

The fourth lesson — "it's important to find meaning in this journey" — has changed how Emma perceives "the world."

"I've become more compassionate. I find that I'm able to hold more space for what others might be going through. I'm holding gratitude as well as grief," she shared. "There is power in becoming an advocate for this community. It's something that I want our kids to see me face out loud, working with others, fighting through the stigma and isolation that a disease like this can bring."

Lessons five and six, respectively — "there is power in giving back" and "hope is everything" — caused Emma to realize that her family has "resources" that others struggling with FTD may not have access to.

"I struggle with guilt," she admitted. "When I'm able to get out for a hike to clear my head, it's not lost on me that not all care partners can do that. When what I share about our family's journey gets press attention, I know that there are many thousands of untold, unheard stories, each of them deserving of compassion and concern"

Emma wrote that she has "so much more hope today than I did after Bruce was first diagnosed" due to the "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. And I have hope in how our entire family can find joy in the small things, and in coming together to celebrate all the moments life has to offer," she concluded. "I know I still have so much to learn about FTD, this community, and how research on the disease is evolving. But I'm finding my footing. As much as I grieve this experience daily—as I know so many others do — I also know that it has made me stronger than I ever thought possible."

Last week, Bruce's daughter Tallulah opened up about the actor's "really aggressive cognitive disease." As for how Bruce's mental state is, Tallulah said he's "the same."

"I think in this regard I've learned is the best thing that you can ask for, and what I see [in him] is I see love when I'm with him and it's my dad and he loves me," she said on Wednesday's The Drew Barrymore Show.

Tallulah — the youngest of the three daughters Bruce shares with ex-wife Demi Moore — said she has been going through her father's possessions he has collected during his decades-long career.

"Part of what's been a really beautiful way for me to heal through this is becoming an archaeologist to my dad's stuff, his world," she explained, later adding: "And being able to look through those photos. ... He's my age living in Hell's Kitchen and he's a total goofball and he's an absurd person and I'm an absurd person and so there's a wonderful line of connection."

Tallulah also stressed the importance of getting the word out about FTD.

It's really important for us to spread awareness about FTD because there’s not enough information out there," she explained." "If we can take something that we're struggling with as a family and individually to help other people, to turn it around, to make something beautiful about it — that's really special for us."