Bruce Willis’ wife says they were unprepared for his diagnosis – Celebrity News – Entertainment

Bruce Willis has been residing in a separate, single-level home with 24/7 caregivers as his family deals with the brutal reality of his frontotemporal dementia diagnosis.

The Hollywood icon, who is now 70, was diagnosed with the condition in February 2023 and has since largely retreated from the public eye to take care of his health. In the past few months, his family has offered rare yet heartfelt glimpses into how the disease is impacting both Willis and his children.

Just a week before Bruce’s birthday in March this year, Emma Heming Willis, his wife, launched The Emma & Bruce Willis Fund for Dementia Research and Caregiver Support. This foundation is dedicated to raising awareness, funding research, and providing resources for caregivers.

In a heartfelt op-ed titled “Why California Must Track Frontotemporal Dementia” for The San Bernardino Sun, the British model and actress opened up about how the Willis family was “totally unprepared to navigate” Bruce’s diagnosis.

She wrote, “When Bruce got his diagnosis, we walked out of the doctor’s office without a roadmap. No plan of action, no treatment, and no hope. Our doctor just told us to ‘check back in a couple of months’. As a wife and mom, I was already frozen with fear about the changes happening in our lives.”

She noted that on average, it takes three to seven years to receive an FTD diagnosis, in part because many clinicians are not trained to recognize its early signs. Calling out the delay in diagnosis, she reiterated that “those lost years really and truly matter, because they delay understanding and support.”

She further explains that this happens because “we don’t have the data.”

“The disease is not tracked. It does not become part of any dataset that researchers, clinicians, or policymakers can learn from. Without data, there is no clear picture of how many people are affected, or where resources are most urgently needed,” she added.

Speaking for patients and families affected by FTD, she explains that Senate Bill 1047 would require the California Neurodegenerative Disease Registry to begin collecting data on every single FTD diagnosis statewide.

“Being seen is the first step toward being helped,” the actress advocated.

Emma has been vocal about the Willis family’s struggles for a long time. When Bruce was first diagnosed, she revealed that she felt “very dark, very one-note of just grief and sadness,” frequently left to hunt online for solutions.

“I ended up searching the web to figure out what to do,” she said.

Now bringing up daughters Mabel, 13, and Evelyn, 11, mostly alone, Emma says caregiving compelled her to discover meaning. “Early on, I was too scared to say anything to anyone… I realized it would be beneficial to talk about it and raise awareness.”