Emma Heming Willis is opening up about her mission to help other caregivers and patients amid husband Bruce Willis‘ frontotemporal dementia battle.
“Early on, I was very isolated. I was too scared to say anything to anyone,” Heming Willis, 49, told People in an interview published on Wednesday, September 3. “I was in so much sadness and darkness for so long.”
In an accompanying video, Heming Willis added, “I ended up becoming very singular in this and it felt like what was happening was only happening to us.”
She explained that she was willing to publicly open up about her husband’s condition when she realized it could help other people get into clinical trials and see doctors sooner.
Bruce Willis’ Wife Emma Was Treated for Depression Amid His Dementia Battle
Willis’ family first announced he was diagnosed with aphasia, a disorder that affects speaking and understanding language, in March 2022. The following year, they shared that his condition had progressed to FTD, a progressive brain disease. (Heming Willis shares kids Mabel, 13, and Evelyn, 11, with Willis, 70. Willis is also a dad of daughters Rumer, 37, Scout, 34, and Tallulah, 31, whom he shares with ex-wife Demi Moore.)
Heming Willis said that she noticed Willis’ childhood stutter coming back and changes in his communication and memory, ringing alarm bells in her head that something was wrong.
“Things that he was saying or the conversations that we were having that weren’t really aligning anymore,” she said. “Things just got very cloudy in our relationship, which just so wasn’t like our relationship. Things just started to shift gradually over time, and it was just hard for me to put my finger on what and why … I never in a million years thought that was a symptom of FTD.”
While she was initially shocked by the news, Heming Willis said she was “happy to get any kind of diagnosis of anything.”
“I didn’t know what aphasia was prior to receiving that initial diagnosis, which was a symptom of a disease, not actually a diagnosis but once we found that out, it sort of helped us to sort of wrap our head around what was happening,” Heming Willis explained. “It wasn’t until later that year that we got the official diagnosis of frontotemporal dementia.”
Heming Willis said the “unfortunate thing” is that there is no treatment or cure for the disease. After Willis was diagnosed, she said they were sent out into the world with “no support, no help, no nothing,” which was “very traumatic.”
Emma Heming and Bruce Willis’ Doc: Questioning Their Marriage and More
She was inspired to share her story as a means to help other couples going through something similar, as FTD is the most common form of dementia affecting people under the age of 60.
“Doctors aren’t thinking about dementia in those years so it’s very confusing. … It’s just not on anyone’s radar,” Hemming Willis noted, mentioning her goal is to make sure people take less time getting to a diagnosis so that the patient and the caregiver can both find support.
Heming Willis is set to share more in her upcoming book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, out on September 9.
