Additional Coverage:
- Bruce Willis and wife left with ‘no hope and direction’ after his dementia diagnosis (themirror.com)
Emma Heming Willis Advocates for Support Amid Bruce Willis’s FTD Battle
Hollywood icon Bruce Willis’s frontotemporal dementia (FTD) diagnosis has brought significant challenges for him and his family. Since the degenerative condition was confirmed in 2022, his wife, Emma Heming Willis, has been remarkably open about how she and their family are navigating his health journey, recently highlighting the profound lack of immediate support post-diagnosis.
In a candid interview, Heming Willis, author of “The Unexpected Journey,” shared her frustration with the minimal information provided by medical professionals following their initial consultation. “The day we received the diagnosis, we walked out of that appointment with nothing — no hope, no direction, no support,” she recounted.
“I wasn’t really given any information other than just the nuts and bolts of FTD.” She described the experience as deeply traumatic, feeling as though “your whole life is being ripped from you in a moment.”
Faced with this void, Heming Willis began extensive online research to comprehend the diagnosis and its implications for her husband and their family. “After that appointment, I started digging into research online to really understand: What was this diagnosis?
How does it impact my husband? How does it impact our family?”
she explained. She learned the progressive nature of FTD, noting the difficulty of the early years spent “trying to figure it all out in real time and learning things on the fly.”
As the disease progresses, she added, “the needs start changing and the things that they used to be able to do they can’t do anymore. You have to rev up the support.”
Now, driven by her personal experience, Heming Willis is developing a straightforward resource aimed at assisting other families coping with dementia diagnoses. She recently consulted with Dr. Bruce Miller, a neurologist and director of the UCSF Dementia Center, about her vision for a simple, accessible guide.
“[Dr. Bruce Miller] said he’d love to do this with me,” Heming Willis shared.
“So we’re putting together these resources, and then I’m going to take this template to other institutions.” For the mother of Mabel and Evelyn, her daughters with the “Die Hard” actor, this initiative brings a sense of fulfillment.
“That brings me joy to know that other caregivers will walk out of that office, and even though it’s still going to be a traumatic visit, they’re going to know there is support.”