World Frontotemporal Dementia Awareness Week is celebrated from 24 September to 1 October. One of the people who has involuntarily made this disease more visible is actor Bruce Willis (Idar-Oberstein, Germany, 68 years old), who was diagnosed in February 2023, his family announced. "There are no treatments for this disease, a reality that we expect to change in the coming years," they said in a statement. This Monday, September 25, coinciding with the week that aims to raise awareness about this degenerative disease, the wife of the interpreter, Emma Heming Willis, wanted to talk about how her husband's frontotemporal dementia is being lived at home. "It's hard for the person diagnosed. It is also difficult for the family. And that's no different for Bruce or me or our girls. When they say it's a family disease, it really is," the 45-year-old British model said in an interview with Today co-host Hoda Kotb.
It's the first time Heming has spoken publicly about her husband's health since 2009. "It's hard to tell if Bruce is aware of what's happening to him," she admitted through tears. For her, accepting the diagnosis of the star of The Crystal Jungle or The Sixth Sense was both a blessing and a curse. "Understanding what was happening, being able to accept what is, doesn't make it any less painful, but just being aware of what's happening to Bruce makes it a little easier," she confessed. The actor retired from film in March 2022 for suffering from aphasia, a disease that affects his speech, and almost a year later it was revealed that it was just a symptom of the frontotemporal dementia he suffers.
Tallulah, daughter of Bruce Willis: "While I flaunted my dysmorphia, my father silently struggled with frontotemporal dementia"
Even so, the model stressed that despite the actor's diagnosis, "beautiful things" continued to happen in their lives and assured that Willis would like both her and her daughters to continue enjoying the "joy of life". The couple have two daughters in common: Mabel, 11, and Evelyn, 9, for whom their father is a reference of love, patience and resilience, according to their mother. "It's teaching them a lot of how to care and love, and it's really a beautiful thing within sadness," Heming said. In addition, Bruce Willis has three other daughters from his previous marriage to actress Demi Moore: Rumer, 35, Scout, 32, and Tallulah, 29.
Heming defines herself as a "caregiver" rather than a caregiver and insists on the importance of taking her own health into account in order to properly care for her husband. "When we don't take care of ourselves, we're not good for the people we love," he said during the interview. In March 2023, the model posted a video on her Instagram profile (where she has more than 870,000 followers) to explain Willis' situation and ask the paparazzi to please keep their distance from the actor. "If you're someone caring for someone with dementia you know how difficult and stressful it can be to get someone out there and help them move around safely, even if it's to get a coffee. Give him your space. Let our family, or whoever is with him that day, be able to take him from one place to another safely," he requested.
In June of this year, it was Tallulah, the youngest daughter of Bruce Willis and Demi Moore, who shared her experience dealing with her father's illness in an interview for Vogue magazine. "In the past I was very afraid that sadness would destroy me, but finally I feel like I can taste that time, hold my father's hand and feel that it's wonderful," she confessed. The advantage of frontotemporal dementia over Alzheimer's, he explained, is that it is characterized by language deficits rather than memory loss: "He still knows who I am and lights up when I walk into the room." This disease is the third most common cause of neurodegenerative dementia, after Alzheimer's and dementia with Lewy bodies. In the absence of a cure, the family has sought the support of some of the best medical professionals in the field and has hired a personal assistant who ensures that Willis receives the necessary care at all times.