Bruce Willis' Wife Shares Update on His Dementia Battle

Bruce Willis' wife Emma Heming has opened up more about the acclaimed actor's dementia diagnosis and their family's "difficult chapter." 

In an essay for the Sunday Paper site, Heming reflected on the six lessons she has learned since announcing early last 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 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."

She noted that FTD is the second-most common form of young-onset dementia and can strike at any age. That's why lesson two was: "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."

Heming declared the Willis family's goal is "to see an end to FTD". Throughout the process, she disclosed that she has learned a third lesson: "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 noted.

The fourth lesson — "It's important to find meaning in this journey" — has changed how Heming 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 revealed. 

"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 Heming to realize that her family has "Resources" that others struggling with FTD may not have access to.

"I struggle with guilt," she stated. "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"

Heming added 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 his "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 The Drew Barrymore Show.

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

She added, "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 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 raising awareness 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."