Bruce Willis’ wife calls his dementia diagnosis a ‘blessing and curse’

Emma Heming Willis, actor Bruce Willis’ wife, provided an update on her husband’s health in a new interview with the Today show.

Heming Willis spoke with host Hoda Kotb about how her husband’s diagnosis of frontotemporal dementia (FTD) changed her family.

“It was a blessing and a curse to finally understand what was happening so I can [experience] the acceptance of what it is,” she said. “It doesn’t make it any less painful, but just being in the acceptance and just [knowing] what is happening to Bruce makes it a little bit easier.”

She added that being a celebrity does not change the reality of living with a disease like FTD. “You know what I’m learning is that dementia is hard. It’s hard on the person diagnosed, it’s also hard on the family,” she explained. “And that is no different for Bruce or myself or our girls. When they say this is a family disease, it really is.”

Heming Willis said all of her husband’s family, including their young children, have made it a point to communicate about how their new reality is affecting them. “We’re a very honest and open household,” she explained. “The most important thing was for us to be able 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 makes sense. So it was important that we let them know what it is.” Speaking openly about it also helps to demystify the illness, she added: “I don’t want there to be any stigma or shame attached to their dad’s disease.”

FTD refers to a group of illnesses that primarily affect the frontal and temporal lobes of the brain, which are associated with behaviour, personality, and language, per the Mayo Clinic.

Portions of these lobes shrink, and cause significant personality shifts. It’s often misdiagnosed as Alzheimer’s disease or a psychiatric problem, and it often begins between age 40 and 65. FTD accounts for between 10 and 20 per cent of all dementia cases.

The symptoms can be distressing to family members, as they include lack of judgment, inappropriate social behaviour, decline in personal hygiene, compulsively putting things in one’s mouth, and eating inedible objects. People may also show a lack of interest in their activities, which is sometimes mistaken for depression, and they may exhibit a lack of empathy.

Speech and language issues caused by FTD include symptoms like forgetting the meanings of certain words, difficulty writing, difficulty naming things, and not being able to construct sentences.

Right now, doctors do not have any treatments or cures for FTD, though certain medications – including antidepressants and antipsychotics – are sometimes used to alleviate symptoms.

Heming Willis said she isn’t sure if her husband is aware of his disease, saying it’s “hard to know”. She added that she calls herself a “care partner”, rather than a “caretaker”.

“He is my partner so I am his care partner,” she said. “As a care partner, it’s so important to be able to ask for help and support. You can look to organisations; it’s a great starting point. It’s important for care partners to look after themselves so they can be the best care partner for the person they’re caring for.”

She added that her family makes a contended effort to be grateful for everything else going on in their lives as they care for her husband. “There are so many beautiful things happening in our lives,” Heming Willis said. “It’s 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.”

Though the caretaking is challenging, she added that her husband’s illness is a lesson. “My kids would be great no matter what, but this is teaching them so much—how to care and love,” she said. “That’s a beautiful thing amongst the sadness.”