Bruce Willis’ Wife Gives ‘Hard’ Update About Husband’s Dementia Journey
Emma Heming Willis opened up about her role as Bruce Willis’ caregiver during an interview with TODAY’s Hoda Kotb.
Willis was joined by the CEO of the Association for Frontotemporal Degeneration, Susan Dickinson, during the Sept. 25 appearance to kick off World Frontotemporal Dementia Awareness Week.
The mother of two—she shares Mabel Ray, 11, and Evelyn Penn, 9, with Willis—gave an update on the action star, who was previously diagnosed with frontotemporal dementia, explaining that it’s “hard” on everyone.
"Dementia is hard," she said, adding, "It’s hard on the person diagnosed, it’s also hard on the family. And that is no different for Bruce, or myself, or our girls. When they say this is a family disease, it really is."
When asked if her husband is aware of his condition, she explained, "It's hard to know.”
However, she prioritizes being honest with her daughters about what's going on: “We’re a very honest and open household. The most important thing was to be able for us to say what the disease was, and explain what it is, because when you know what the disease is from a medical standpoint, it sort of all makes sense."
She continued, “It was important that we let them know what it is because I don’t want there to be any stigma or shame attached to their dad’s diagnosis or for any form of dementia.”
Heming Willis has served as the actor’s caregiver since his frontotemporal dementia diagnosis, which was publicly revealed by his family in February 2023, about a year after being initially diagnosed with aphasia in May 2022, a disorder affecting language processing and communication abilities.
Heming Willis also underscored how important it was to get the right diagnosis, noting, “To finally understand what was happening so that I could be into the acceptance of what is — it doesn't make it any less painful, but ... just being in the know of what is happening to Bruce makes it a little easier."
And while the situation isn’t ideal for anyone, she said that it has taught their daughters so much about "love, patience and resilience."
"Honestly he is the gift that keeps on giving," the 45-year-old stated, adding, "It's teaching them so much and how to care and love, and it’s really a beautiful thing amongst the sadness.”
"And he is teaching me," she continued. "You know, for me to be out here doing this... this is not my comfort zone but, like, this is the power of Bruce."
Heming Willis—who explained that she refers to herself as a “care partner” versus a “caretaker” because she prioritizes looking after herself to be the “best care partner for the person they’re caring for”—said that her goal is to continue to raise awareness about the condition.
"Him and our girls, who are watching — I got the whole family watching — they’re rooting me on," she said, noting, "I’m here to raise awareness but to also make them proud."
Heming Willis explained that part of being a care partner is asking for help, and in light of World FTD Awareness Week, she will be releasing new videos with experts every day on her YouTube channel.
The Make Time Wellness founder is transparent about her journey as a care partner on social media having previously opened up about the struggles she endures and calling out snarky comments.
For guidance and resources regarding frontotemporal dementia, diagnosis, care and support, contact AFTD’s HelpLine at 866-507-7222 or by email at [email protected].
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