Speaking to Hoda Kotb on the Today Show on NBC recently, Heming Willis described how the diagnosis has affected the couple and their two daughters, reports CNN’s recent article entitled, “‘Dementia is hard’: Emma Heming Willis shares update on husband Bruce Willis’ condition.”
“What I’m learning is that dementia is hard. It’s hard on the person diagnosed. It’s also hard on the family. And that is no different for Bruce or myself or our girls,” she said. “And when they say that this is a family disease, it really is.”
Kotb asked Heming Willis if Bruce was aware of his condition, to which she responded: “Hard to know.” Heming Willis was on the show to raise awareness about FTD and was joined by Susan Dickinson, CEO of the Association for Frontotemporal Degeneration.
Dickinson explained that one of the things that the condition impacts is self-insight; therefore, some people lose understanding that they have changed. Kotb also asked how the diagnosis had affected Heming Willis.
“I think it was the blessing and the curse,” she said, explaining that it is good to finally understand what is happening to him, even though it’s still painful.
“Bruce would really want us to be in the joy of what is, he would really want that for me and our family,” she said.
After retiring from acting in March 2022 due to a speaking disorder called aphasia, Willis was diagnosed with frontotemporal dementia.
“Since we announced Bruce’s diagnosis of aphasia in spring 2022, Bruce’s condition has progressed,” the Willis family said in a statement at the time. “Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis.”
“The most common dementia for people under 60, FTD can cause challenges in communication, as well as changes to one’s behavior, personality, or movement,” according to a statement from the Association for Frontotemporal Degeneration.
People with FTD typically live six to eight years with the condition, and between 10% and 30% of FTD cases are inherited.
Other than genetics, there are no other known risk factors, but scientists are examining what part the thyroid and insulin may play in the onset of the disease.
Reference: CNN (Sep. 25, 2023) “‘Dementia is hard’: Emma Heming Willis shares update on husband Bruce Willis’ condition”