Emma Heming Willis Turned Her Pain Into Purpose After Bruce’s Dementia Diagnosis. Here’s What She’s Learned Along the Way
In the weeks leading up to our February 2023 announcement that Bruce was living with frontotemporal dementia (FTD), I struggled with whether and how to come forward with this difficult chapter in our story.
Yet after our family shared the news, I felt like I could breathe. Suddenly, I wasn’t alone anymore and I could seek the support Bruce, myself, and our family so desperately needed.
A little more than half a year later, I want to share some of the things I’ve learned in case they can help you on your own journey—no matter what challenges you face.
Lesson No. 1: There’s strength in community. Bruce’s FTD diagnosis was devastating, but it explained so much of what we’d been going through. His diagnosis enabled us to put things that once felt so confusing into a medical context. The Association for Frontotemporal Degeneration cites 3.6 years as the average time from onset of symptoms to diagnosis. 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. The people I’ve met and interviewed in the FTD community have so much compassion, and are so determined to make things better for the next family.
Lesson No. 2: Never underestimate the power of awareness. FTD is the most common form of young-onset dementia and can strike at any adult age—from someone’s 20s through their 80s. But it’s still not a well-known disease—so much so that getting an accurate diagnosis is often a long and lonely process.
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. 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. I’ve seen others raise awareness for other important causes and illnesses close to their hearts and the changes that have followed have been remarkable. I’m inspired and motivated by that fact. My goal is to see an end to FTD.
Lesson No. 3: Research is at a pivotal moment. When you learn about this diagnosis, you find out right away that there is no cure or treatment. To speak with UCSF’s Dr. Bruce Miller—a pioneer in FTD research—and to listen to him talk about what he calls the “obsession this community’s researchers have with finding treatments and a cure” is to be inspired. 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.
Lesson No. 4: It’s important to find meaning in this journey. I wouldn’t wish an FTD diagnosis on anyone, but our journey has changed how I perceive 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. 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.
Lesson No. 5: There is power in giving back. Recently, I met someone who had just learned about FTD in her life. When I first learned about the condition, I didn’t have someone in my corner who understood this experience. The fact that I was able to help connect this woman to the right information and resources was a moment I won’t forget. Even though I can’t change her situation, I can help guide her, tell her where to start, and help her feel a little less lonely.
I struggle with guilt, knowing that I have resources that others don’t. 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. At the same time, I see that what I share matters to others who may be struggling, and in a small way makes them feel seen and understood. I want people to know that when I hear from another family affected by FTD, I hear our family’s same story of grief, loss, and immense sadness echoed in theirs. It's important to me to be an advocate on behalf of those families who don’t have the time, energy, or resources to advocate for themselves.
Lesson No. 6: Hope is everything. I have so much more hope today than I did after Bruce was first diagnosed. I understand this disease more now, and I’m now connected to an incredible 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.
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.
Emma Heming Willis is a British and Indian/West Indian model, entrepreneur, advocate, wife, and mother of two and stepmother of three. She is the co-founder and Chief Impact Officer for Make Time Wellness, and founder and CEO of CocoBaba, a vegan skincare company. Emma’s husband Bruce Willis was diagnosed with frontotemporal dementia (FTD), and she has since become a powerful advocate for dementia awareness, support for the lived experience of FTD for care partners and families, and research to end FTD and all forms of neurodegenerative disease.