By Jack Guy, CNN
Speaking to Hoda Kotb on the Today show on NBC Monday, Heming Willis described how the diagnosis has affected the couple and their two daughters.
“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 her husband was aware of his condition, to which she responded: “Hard to know.”
Heming Willis appeared 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 affects is self-insight, and therefore some people lose understanding that they themselves 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.
“Just being in the know of what is happening to Bruce just makes it a little bit easier,” she added.
As for how they explained the situation to daughters Mabel and Evelyn, “we’re a very honest and open household,” she said. “And, you know, the most important thing was to be able for us to say what the disease was, explain what it is, because when you know what the disease is from a medical standpoint it sort of all makes sense.”
“So it was important that we let them know what it is because, you know, I don’t want there to be any stigma or shame attached to their dad’s diagnosis, or for any form of dementia,” added Heming Willis.
She also struck a positive note.
“He is the gift that keeps on giving,” she said of her husband. “Love, patience, resilience, so much.”
“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, his family announced in February this year.
“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.”
FTD is a group of disorders caused by a buildup of tau and other brain cell destroying proteins in the brain’s frontal lobes (behind your forehead) or temporal lobes (behind your ears). The condition typically strikes between the ages of 45 and 64, according to Alzheimer’s Research UK.
“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, according to the US National Institute on Aging. Between 10% and 30% of FTD cases are inherited. Other than genetics, there are no other known risk factors, although researchers are investigating what role the thyroid and insulin may play in the onset of the disease.
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CNN’s Sandee LaMotte and Kristen Rogers contributed to this report.