Emma Heming is committed to speaking candidly about her experience supporting husband Bruce Willis through his frontotemporal dementia (FTD) battle, and what that looks like for their family.
Ever since the Die Hard actor’s family first disclosed his diagnosis, his wife has become a steadfast advocate for the FTD community, including those diagnosed with it and those who are their caregivers.
Last week, the Make Time Wellness co-founder attended the AFTD 2024 Education Conference, and spoke with Susan Dickinson, CEO of The Association for Frontotemporal Degeneration, about her decision to publicly disclose news of Bruce’s condition.
Thinking about their kids, Emma shared: “I never wanted our daughters to think that this was some kind of family secret that we have to keep,” adding: “I felt like it was very important for us to come out and say what it was.”
She continued: “I wanted them to see us go out and raise awareness, and on a global scale, because that’s the kind of reach that their father has. And I know that he would want us to do that, so that was very important.”
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Emma was later also asked what changed for her and her family once the diagnosis had been made public, to which she quickly admitted: “I could breathe.”
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She explained: “I could really exhale, and sort of just feel this weight sort of lift from my shoulders,” and emphasized: “Everything changed for the better once we were able to disclose his diagnosis.”
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“I was able to seek the support that I so desperately needed, for my husband, for our whole family,” she added.
Bruce and Emma started dating in 2007 after meeting at their trainer’s gym, and tied the knot in 2009. They are doting parents to daughters Mabel Ray, 12, and Evelyn Penn, ten, plus he is also a dad to daughters Rumer, 35, Scout, 32, and Tallulah, 30, who he shares with Demi Moore, his wife from 1987 to 2000.
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In April of 2022, the Willis-Heming-Moore family first shared that Bruce had been diagnosed with aphasia, and the following year they revealed that he was more accurately diagnosed with FTD.
Emma previously opened up about the diagnosis and her ongoing commitment to the FTD community in a piece for Maria Shriver’s newsletter The Sunday Paper back in November, in which she wrote: “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,” emphasizing: “The world needs to know that not all dementia is Alzheimer’s and that not all dementia impacts memory.”
“I wouldn’t wish an FTD diagnosis on anyone, but our journey has changed how I perceive the world,” she noted, and continued: “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.”
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