Actor Bruce Willis’ wife opened up on how the family is handling his frontotemporal dementia diagnosis, saying that despite the challenges, it has taught them how to love and care.
The family announced in March 2022 that the “Die Hard” actor was diagnosed with aphasia, which was “impacting his cognitive abilities,” and that he would step away from his silver screen career. The family announced in February that he had been diagnosed with frontotemporal dementia.
His wife, Emma Heming Willis, said on NBC's "TODAY" show Monday: “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. And when they say that this is a family disease, it really is.”
Heming Willis called herself a "care partner" and said her household has been "open and honest" about the disease.
“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," she explained. "It was important that we let [our daughters] know what it is because I don’t want there to be any stigma or shame attached to their dad's diagnosis or any form of dementia."
The couple have two young daughters. Bruce Willis, 68, has three adult daughters with his first wife, Demi Moore.
Heming Willis, 45, spoke on the morning show in honor of World FTD Awareness Week.
Frontotemporal dementia, known as FTD, is an “umbrella term” for a group of brain disorders that affect the frontal and temporal lobes of the brain and are generally associated with personality, behavior and language, according to the Mayo Clinic.
Symptoms range with some people experiencing “dramatic changes in their personalities” and becoming impulsive or emotionally indifferent, while others lose the ability to use language properly, according to the clinic.
There is no cure for FTD, although medications can improve quality of life by reducing agitation, irritability and depression sometimes associated with it, according to the National Institute on Aging.
Susan Wilkinson, chief executive of the Association for Frontotemporal Degeneration, explained that FTD is often misdiagnosed.
"It’s one of the most confusing parts because it is less common. Most doctors aren’t familiar with it, so it can take almost four years for people to get diagnosed on average. ... They accrue many misdiagnoses along the way. Often depression, bipolar disease, Alzheimer's,” she said.
When asked if Willis is aware of his own condition, Heming Willis said: “Hard to know.”
Wilkinson added: “What we know is that obviously the disease can start in the frontal and temporal lobes like the name signifies and one of the things that the frontal lobe controls is self-insight. So we really don’t know. Some people, it’s the first thing they lose, any understanding that they themselves have changed, and other people retain that for a long time."
Heming Willis called her husband's diagnosis "the blessing and the curse."
"Honestly, he is the gift that keeps on giving. Love. Patience. Resilience. So much and he’s teaching me and our whole family. For me to be out here doing this, this is not my comfort zone. This is the power of Bruce," she said.
Still, she maintained, 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 I can see what is happening around us. Bruce would really want us to be in the joy of what is," she added. "He would really want that for me and our family."
