Bruce Willis’ wife doesn’t know if he's aware of his illness as she speaks out on dementia diagnosis

Pulp Fiction's Bruce Willis may not be aware of his dementia, according to wife Emma.

This week marks World Frontotemporal Dementia Awareness Week (24 September until 8 October) and Emma Hemming Willis has opened up about her husband Bruce's current condition.

Last year, the Willis family announced Bruce had been diagnosed with frontotemporal dementia (FTD), a year after it was revealed he was retiring from acting following an aphasia diagnosis.

Joined by Susan Dickinson, the CEO of the association for FTD, on NBC's TODAY show, Bruce's wife and 'care partner' Emma, who shares daughters 11-year-old Mabel Ray and eight-year-old Evelyn Penn with the actor, reflected how she's 'learning' dealing with dementia is 'hard' on not just Bruce but their family too.

"It's a family disease," she said. "We're very honest and open household and the most important thing was to be able to say what the disease was, explain what the disease is, because when you know what the disease is from a medical standpoint, it sort of all makes sense.

"So it was important to let them know what it is, because I don't want there to be any stigma or shame attached to their dad's diagnosis or for any form of dementia."

But is Bruce aware of his illness?

Getty Images/ Lev Radin/ Pacific Press/ LightRocket

Bruce's dementia can affect movement, speech, behaviour and personality and is often misdiagnosed - a motivator for Emma to raise important awareness of the disease.

Emma has reflected on Bruce's diagnosis as 'a blessing and a curse,' the family relieved to have discovered what was wrong and 'in the know what was happening to Bruce'.

However, she admits she doesn't know if the Die Hard actor is fully aware of his illness.

TODAY correspondent Savannah Guthrie questioned: "Does he know what's going on? Is that something he's aware of?"

Emma responded: "It's hard to know."

NBC

Dickinson goes on to explain the disease can start in the frontal or temporal lobe - 'like the name signifies' - and 'one of the things the frontal lobe controls is self insight'.

"So we really don't know, some people it's the first thing they lose, is any understanding that they themselves have changed and other people retain that for a long time," she says.

Emma stresses there are so many 'beautiful things' happening in their family's lives, resolving: "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. He'd really want that for me and our family."