Emma Heming Willis was interviewed Tuesday night, August 26, on “Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special,” sharing her family’s experience of living with FTD. In a moving discussion, Mrs. Willis talked about the onset of symptoms in her husband, the difficulty of getting a diagnosis, explaining the disease to her young children, and how she embarked on an unexpected journey to become a high-profile advocate for dementia caregivers.

The program is also available on Disney+ and Hulu.

Her husband, Bruce Willis, 70, retired from acting in March 2022, citing an initial diagnosis of aphasia, and a bit less than a year later, the family was given a diagnosis of FTD.  Mrs. Willis said she had never heard of the disease and that doctors weren’t equipped to educate her.

“To leave [the doctor’s office] with nothing, just nothing, with a diagnosis I couldn’t pronounce, I didn’t understand what it was. I was so panicked,” she told Sawyer.

The first signs of something wrong included reports of Willis—the consummate professional—seeming confused on his film sets, and missing lines and cues. Mrs. Willis also noticed worrisome developments at home. She recalled one night the family’s security alarm went off, and her husband’s seeming indifference to it. “That was not Bruce,” she said. Apathy is a common early symptom in some persons diagnosed with FTD.

Mrs. Willis said that with the family’s diagnosis of FTD finally in hand, she made a decision to accept that, in this case, the disease always wins. The couple’s children, Mabel, 13, and Evelyn, 11, were told “pretty quickly” about their dad’s disease.  “I never wanted to them to think that he wasn’t paying attention to them.”

“What I learned is that when you give them the information, you wait to hear what their questions might be. And they really didn’t have a lot of questions about it. I think there was a sense of relief…Okay, now we get it, and now we understand truly what’s happening.”

Mrs. Willis said she and the girls made up a new acronym based on words easier to understand than “frontotemporal degeneration.” They decided that their father had “Fantastic Turtles Dancing” in his head.

The decision to advocate
Mrs. Willis explained to Sawyer why she—a self-described introvert—has taken up the mantle of FTD advocacy, spreading awareness and drawing attention to the needs of the 11 million unpaid caregivers across America.

“If I’m overwhelmed, even with the support and resources that I have,” she said, describing years of stress and the financial toll of caregiving, as well as the complicated role of Medicare and insurance, “What does that mean for the countless women doing this work with absolutely no support?”

Part of Mrs. Willis’ advocacy is a project she’s been working on for several years, a book called  “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.” The book is scheduled for release September 9.