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 disorder 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.
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.
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.
“It can affect speech, behaviors, personality and what we call executive functioning,” Dickinson said, referring to skills that help to plan ahead and achieve goals.
FTD is often misdiagnosed, so Dickinson shared some of its most notable symptoms.
“What we’re really talking about is unexplained changes in how a person is in the world. So, somebody who normally speaks absolutely fine has trouble putting their thoughts into meaningful sentences, or they may lose the meaning of a specific word,” she said, adding that all of a sudden struggling with finances, having problems at work, “making poor decisions or (not) completing tasks” can also be signs.
Coming to terms with her husband’s diagnosis was “the blessing and the curse,” Heming Willis said on TODAY. “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.”
Caregiving for a loved one with dementia
Heming Willis said she calls herself a “care partner,” rather than a caretaker.
“It’s important for care partners to look after themselves so that they can be the best care partner for the person they’re caring for,” she said.
She added her husband is “the gift that keeps on giving,” and that he’s taught their two daughters, Mabel and Evelyn, traits like “love, patience and resilience.”
“It’s teaching them so much and how to care and love, and it’s really a beautiful thing amongst the sadness,” Heming Willis said.
She also shared that learning to ask for help has been an important part of her journey caring for her husband, and that she’s turned to AFTD and other organizations for resources.
This week, Heming Willis is using her platform to spread even more information on caregiving for someone with FTD. She’s 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 info@theaftd.org.