For the first time since her husband, action star Bruce Willis was diagnosed with dementia, Emma Heming Willis is sharing her journey as a caregiver in an exclusive interview with TODAY co-anchor Hoda Kotb.
The mother of two and Make Time Wellness founder joined TODAY on Sept. 25 to kick off World Frontotemporal Dementia Awareness Week, alongside CEO of the Association for Frontotemporal Degeneration Susan Dickinson. Bruce Willis’ family shared that he’d been diagnosed with the condition earlier this year.
During the conversation, Heming Willis shared an update on Bruce Willis’ health and life with frontotemporal dementia — and what she wants people to know about caring for loved ones with conditions like these.
“Dementia is hard,” Heming Willis said on TODAY. “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.”
Heming Willis shared it is unclear if her husband is aware of his condition.
“It’s hard to know,” she said.
Bruce Willis’ recent health diagnoses
In March 2022, Bruce Willis’ family publicly revealed that he’d been diagnosed with aphasia, leading him to step away from acting.
The condition affects a person’s language processing and communication abilities, TODAY.com explained previously. Someone with aphasia may have trouble understanding speech or with reading or writing, for example.
Aphasia can develop suddenly, most commonly after brain damage due to a stroke. Or, if it’s caused by an infection, brain tumor or other neurological disease, the symptoms can appear progressively over time.
In February 2023, Bruce Willis’ family shared another update on his health. This time, they revealed that his condition had “progressed” and he’d been diagnosed with frontotemporal dementia.
“It was the blessing and the curse,” Heming Willis said of learning of her husband’s diagnosis. “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.”
FTD is different from Alzheimer’s in a few ways, Dickinson told TODAY. In particular, it affects a different part of the brain — language processing areas rather than areas involved in memory — so the symptoms present differently, she explained.
As Dr. Sami Barmada, director of Michigan Brain Bank and associate professor of neurology at University of Michigan Medicine, previously told TODAY.com: “It affects how people behave, how they interact with others and how they speak.”
Caregiving for a loved one with dementia
Stepping into the caregiving role means you don’t know what you don’t know, Heming Willis said, which is why it’s so important to find a supportive community like the AFTD to lean on.
Learning more about the condition and ongoing research helps, too, she said. And she’s using her platform on YouTube to spread that information with expert interviews and tips on supporting brain health. Starting this past Sunday, Heming Willis is releasing a new video in conversation with experts every day in honor of World FTD Awareness Week on her YouTube channel.
Check out these resources from the Association for Frontotemporal Degeneration to learn more about the condition and caregiving.
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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