Emma Heming Willis is opening up about the ongoing grief her family experiences as her husband, Bruce Willis, lives with frontotemporal dementia.
In an interview with HELLO! magazine, Heming Willis described the emotional toll of watching the “Die Hard” actor gradually lose parts of himself to the progressive disease.
“It is extremely difficult and painful,” Heming Willis said. “It's natural, we all want our loved ones to be healthy, full of life and being the person they always were. But FTD is a devastating illness that steals things from you very slowly. So the reality is that you find yourself constantly in a state of grief.”
Willis, 71, stepped away
from acting in March 2022 after his family announced that he had been diagnosed with aphasia, a condition that affects communication. Nearly a year later, the family revealed that his condition had progressed and that doctors had reached a more specific diagnosis of frontotemporal dementia, also known as FTD.
Heming Willis also pushed back against assumptions about her husband’s illness, including the belief that he no longer recognizes her. She said Willis does recognize her and emphasized that he has FTD, not Alzheimer’s disease.
While Alzheimer's disease typically affects memory first, FTD initially affects areas of the brain associated with behavior, personality and language, according to the Association for Frontotemporal Degeneration.
“That’s why what I’d love to see, once and for all, is a shift in the media,” Heming Willis said. “I wish they’d inform themselves about the different types of dementia and learn to report on them accurately – educating the public rather than feeding fear and stigma.”
Despite the family’s grief, Heming Willis said their lives continue to include humor, affection and meaningful connection. Bruce Willis’ family remains united amid his diagnosis.
The couple, who married in 2009, share daughters Mabel, 14, and Evelyn, 12. The actor also has three adult daughters – Rumer, 38, Scout, 35 and Tallulah, 32 – with ex-wife Demi Moore.
Emma Heming Willis says their daughters are learning 'the true meaning of unconditional love'
Heming Willis said the extended family has rallied around Willis while respecting the individual relationship each person shares with him. Their younger daughters, she added, are witnessing a “masterclass in pure love” as relatives and friends continue to support their father.
“They see how much we support their dad, how deeply we love him and how we stand by him through thick and thin,” Heming Willis shared. “It’s wonderful for them to see everyone rallying together: family, friends... absolutely everyone has formed a protective ring around him. I think there’s something genuinely beautiful about them growing up with that sense of unity. Yes, it’s heartbreakingly hard, but my daughters are learning the true meaning of loyalty, devotion and unconditional love.”
She also acknowledged that her children have seen both her resilience and her most difficult moments. Heming Willis said she is navigating the experience in real time and continues to struggle with guilt as a caregiver.
Bruce Willis' diagnosis has not dimmed the family's joy
Still, she rejected the idea that dementia eliminates every opportunity for happiness.
“Just because someone receives a dementia diagnosis – in whatever form – it doesn’t mean their life is over or that the lights have been turned off completely,” Heming Willis added. “There’s still so much fun to be had, so much laughter, and so much connection waiting for you.”
Her family continues to laugh with Willis and appreciate small moments together, she said, holding on to “an entire world of love” that the illness has not taken away.
This article originally appeared on USA TODAY: Bruce Willis' wife Emma says family in 'constant state of grief' amid dementia
