Bruce Willis, the acclaimed actor best known for his roles in iconic films like Die Hard and Armageddon, is facing the most challenging role of his life: a patient battling frontotemporal dementia (FTD). In a recent interview on the Today show, his wife Emma Heming Willis shared the emotional toll that the illness is taking on their family, including their young daughters.

Frontotemporal dementia, an uncommon variant of dementia, affects behaviour, personality, and language. The condition was confirmed in February 2023, a year after Willis stepped back from his acting career. Heming Willis broke down in tears as she shared the “grief and the sadness” of watching her husband’s gradual decline, saying, “Dementia is hard”.

With their daughters Mabel, 11, and Evelyn, 8 – pitching in to care for their father – Heming Willis is trying to navigate the emotional complexities of the illness. “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 revealed.

Heming Willis further explained the importance of being honest with their children about the condition, to avoid any stigma or shame related to dementia. “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,” she stated.

In a poignant moment, when asked if Bruce Willis is aware of his condition, Heming Willis replied, “Hard to know”. Yet, she also expressed relief that a diagnosis had been made. “It doesn’t make it any less painful, but just being in the acceptance and just being in the know of what is happening to Bruce just makes it a little bit easier,” she said.

Highlighting the importance of support, she revealed that she prefers to refer to herself as Bruce’s “care partner” rather than “caretaker”. She emphasised the necessity for care partners to also take care of themselves and lauded organisations like The Association for Frontotemporal Degeneration (AFTD) for providing vital resources.

FTD can affect anyone and often strikes people under 60, making it the most common form of dementia for that age group. This alarming statistic sheds light on an illness that is likely more prevalent than known, especially since diagnosis can take years.

In 2022, it was announced that Willis was initially diagnosed with aphasia, which affects language and communication. His condition has since progressed, according to a family statement. This clarifies the challenges he had been facing on set in previous years, where he reportedly struggled with lines and even used an earpiece for assistance.

In spite of these emotional setbacks, Heming Willis looks at the bigger picture. She referred to Bruce as “the gift that keeps on giving” and believes that the experience is making their daughters stronger individuals.

Though Bruce Willis has retreated from the limelight, his struggle puts a spotlight on frontotemporal dementia, adding a personal face to an under-recognised condition. As the family navigates this emotional maze, their experience serves as a rallying point for increased awareness and understanding of dementia and its impact on families.