Bruce Willis and his wife Emma Heming Willis faced a heartbreaking challenge when the actor was diagnosed with frontotemporal dementia (FTD) in 2022. The 70-year-old star’s diagnosis left the couple feeling overwhelmed and unsupported.

Emma has openly shared her frustration about the lack of information provided by doctors immediately following the diagnosis. She told Yahoo!, “The day we received the diagnosis, we walked out of that appointment with nothing—no hope, no direction, no support. I wasn’t really given any information other than just the nuts and bolts of FTD.”

Reflecting on that moment, she added, “In looking back, I just think that’s so crazy. It was such a traumatic experience, like your whole life is being ripped from you in a moment.”

Determined to understand more, Emma began researching the condition online. “After that appointment, I started digging into research to really understand: What was this diagnosis? How does it impact my husband? How does it impact our family?” she explained.

Emma described the challenges of coping with FTD, especially in its early stages. “With FTD, those early years are so hard because you’re trying to figure it all out in real time and learning things on the fly. It’s a progressive disease. So in the beginning, your person can still manage some things, and then slowly 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.”

Emma, 47, a model and mother to daughters Mabel, 13, and Evelyn, 11, is now channeling her experience into helping others. She is working to develop a “really simple” resource for families coping with dementia diagnoses.

“It brings me joy to know people in my position will feel more supported as a result,” she said.

To create this resource, Emma collaborated with Dr. Bruce Miller, a neurologist and director of the UCSF Dementia Center. “I talked to Dr. Bruce Miller about what had happened at our diagnosis appointment and how I would love for a doctor’s office to have a piece of paper with a couple of resources on it—something really simple,” she shared.

Dr. Miller was eager to assist. “He said he’d love to do this with me. So we’re putting together these resources, and then I’m going to take this template to other institutions.”

Emma hopes this initiative will make a difference for other caregivers. “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.”
https://www.perthnow.com.au/entertainment/celebrity-gossip/bruce-willis-and-wife-emma-heming-willisfelt-there-was-no-hope-no-direction-no-support-after-ftd-diagnosis-c-20218859