Heming Willis, 45, discussed the disease on the Monday, September 25, episode of Today in honor of World Frontotemporal Dementia Awareness Week, revealing it’s “hard to know” whether Willis, 68, is aware of his dementia.
“What I’m learning is that dementia is hard. It’s hard on the person diagnosed,” she explained to host Hoda Kotb. “It’s also hard on the family, and that is no different for Bruce or myself or our girls. When they say that this is a family disease, it really is.”
Willis’ family announced in March 2022 that he would be stepping away from acting after being diagnosed with the language disorder aphasia. The message was signed by Heming Willis and his ex-wife, Demi Moore, as well as his daughters: Rumer, 35, Scout, 32, Tallulah, 29, Mabel, 11, and Evelyn, 9. Earlier this year, it was revealed that his diagnosis included frontotemporal dementia (FTD), for which there is no treatment.
Susan Dickinson — the CEO of The Association for Frontotemporal Degeneration — noted on the Today show that “the disease can start in the frontal or the temporal lobes like the name signifies,” which is the area of the brain that controls “self-insight.” According to Dickinson, people with FTD are often misdiagnosed as many medical professionals are not familiar with the disease.
When it comes to being Willis’ “care partner,” Heming Willis said it’s important for herself and others in her position “to be able to ask for help and support.” She has leaned on her loved ones — particularly Mabel and Evelyn — and has been “honest and open” with them about Willis’ condition.
“It was important that we let them know what it is because I don’t want there to be any stigma or shame attached to their dad’s diagnosis or for any form of dementia,” Heming Willis said.
Heming Willis said it feels like a “blessing and [a] curse” to know her husband’s official diagnosis because she can “finally understand what was happening so that I can be into the acceptance of what is.”
She explained, “It doesn’t make it any less painful, but just being in the acceptance and just being in the know of what is happening to Bruce just makes it a little bit easier.”
Willis, meanwhile, is still “the gift that keeps on giving” for his family. “There’s so many beautiful things happening in our lives. It’s just really important for me to look up from the grief and the sadness so that I can see what is happening around us,” Heming Willis said. “And Bruce would really want us to be in the joy of what is. He would really want that for me and my family.”
Last month, Heming Willis admitted that she was “not good” despite presenting a positive version of herself via social media throughout Willis’ health battle. “So I know it looks like I’m out living my best life. I have to make a conscious effort every single day to live the best life that I can,” she stated in an August 14 Instagram video. “I do that for myself. I do that for our two children and Bruce, who would not want me to live any other way.”