The wife of Hollywood actor Bruce Willis has spoken publicly for the first time since he was diagnosed with frontotemporal dementia (FTD) earlier this year.

In an emotional interview with US Today co-host Hoda Kotb on Monday (US time), Emma Heming Willis was asked if her husband of 14 years was aware of his condition.

“It’s hard to know,” she said.

Officially retired, Willis, 68, shares three daughters, Rumer, Scout, and Tallulah with ex-wife, Demi Moore and two more, Mabel and Evelyn, with Heming Willis.

“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,” Heming Willis said.

“When they say this is a family disease, it really is.”

The action movie hero, who made more than 100 films (The Sixth Sense, Armageddon), officially retired from acting last year after being diagnosed with aphasia, which causes loss of the ability to understand or express speech.

His blended family, which has remained close over the years, revealed in February he had also been diagnosed with frontotemporal dementia.

In honour of World Frontotemporal Dementia Awareness week [from September 24 to October 1], Heming Willis, 45, agreed to appear on the show, and opened up on her family’s heartbreaking journey.

“I think it was the blessing and the curse. You know, to sort of finally understand what was happening so that I can be into the acceptance of what is,” said 45-year-old Heming Willis.

“It doesn’t make it any less painful, but just being in the acceptance and just being in the know of what happened to Bruce just makes it a little bit easier.

“There are so many beautiful things happening in our lives. It is just really important for me to look up from the grief and the sadness so that I can see what is happening around us.”

Heming Willis described herself as a care partner rather than a care taker.

“It’s important for care partners to look after themselves so that they can be the best care partner for the person they’re caring for,” Heming Willis said.

She said her husband was “the gift that keeps on giving”, and that he had taught their daughters Mabel and Evelyn “love, patience and resilience.”

“It’s teaching them so much and how to care and love – and it’s really a beautiful thing among the sadness,” she said.

Heming Willis was accompanied on the studio set by Association for Frontotemporal Degeneration CEO Susan Dickinson. She explained how FTD differs from Alzheimer’s disease, and how it is more about language processing than memory.

“It can affect speech, behaviours, personality and what we call executive functioning,” Dickinson said.

FTD was often misdiagnosed, she said, sharing some key symptoms.

“What we’re really talking about is unexplained changes in how a person is in the world,” she said.

“Somebody who normally speaks absolutely fine has trouble putting their thoughts into meaningful sentences, or they may lose the meaning of a specific word,” she said, adding that sudden struggles with finances, problems at work, “making poor decisions or [not] completing tasks” could be other signs.

Willis”s daughter, Scout, posted on Heming Willis’ Instagram after the studio interview.

“I’m tearing up right now thinking about how much I love you and how brave you are,” she wrote.