Over the weekend, Emma Heming Willis, Bruce Willis’ wife, provided an emotional update. She shared his experience with the daily impact of frontotemporal dementia (FTD). The family publicly disclosed Willis’ diagnosis in early 2023, revealing the profound impact the condition has had on the 70-year-old actor’s life. FTD is a less commonly known dementia that profoundly alters personality and behavior. The most well-known symptom of this disease is the […] loss of language skills.
As Bruce Willis started showing early signs of FTD, his family members observed small, yet concerning changes in his behavior. Initially, these changes arrived almost as a subtle whisper. The process took such a toll that the actor began to isolate himself from friends and family and skip events he used to enjoy. Through all these obstacles, he focused on helping to build the future film industry infrastructure in Georgia, and spent the downtime enjoying life with his family and friends.
As the disease progressed, Emma Heming described her husband as seeming “a little removed, very cold, not like Bruce, who was very warm and affectionate.” This emotional estrangement has been painful and alarming for everyone in the family to process.
Now that Emma Heming has stepped into the role of caregiver, she often feels alone in her responsibilities. She, too, spent sleepless nights trying to figure out how to keep her husband alive. To keep Bruce happy, she decided to preemptively curtail their social life as well.
“I thought I had to do it alone as a caregiver,” – Emma Heming Willis
In her new book titled “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” she shares her family’s experiences with FTD. Along with the memoir, she wants to make it a resource, providing a roadmap for others who might find themselves stuck in their own personal Perfect Storms.
As Bruce’s intellectual and communicative changes have progressed, Emma has provided intimate, continuous care. “The language is going, and, you know, we’ve learned to adapt,” she explained. They’ve certainly found their own creative form of expression that goes beyond simply talking.
Dr. Bruce Miller, director of the UCSF Dementia Center, has given some expert context regarding Bruce Willis’ condition. He noted that patients with FTD can become “incredibly unaware of what is happening,” underscoring the complexity of this type of dementia. He continued by discussing the ways in which initial stages of the disease FTD can impact self-perception and emotional complexity.
“I think the parts of the brain that allow us to suffer and self-reflect are lost very early in frontotemporal dementia,” – Dr. Bruce Miller
Emma Hemingway thought back on her family’s adventures with Bruce. She remarked on how they’ve gone from days filled with fun to just living and stealing moments of joy.
“Not days, but we get moments,” – Emma Heming Willis
In the face of this adversity, she brings attention to Bruce’s continued physical mobility. He holds on to many idiosyncratic personality traits, including his signature laugh. “It’s his laugh, right? Like, he has such, like, a hearty laugh,” she fondly recalled.
She lamented how soon these moments of bliss pass us by.
“And it’s just hard to see because as quickly as those moments appear, then it goes,” – Emma Heming Willis
Bruce Willis needs no introduction—he is known for his impactful roles as well as sharp, brilliant one-liners in an array of films. As he continues his journey with FTD, his family remains committed to supporting him while raising awareness about the condition.
