Wellness May 8, 2024

Bruce Willis' wife says family 'desperately needed' support after dementia diagnosis

WATCH: Emma Heming Willis opens up about revealing Bruce Willis' diagnosis

Emma Heming Willis is opening up about how sharing her husband Bruce Willis' frontotemporal dementia or FTD diagnosis in 2023 impacted her.

"I could breathe, you know, I could really exhale and sort of just feel this weight sort of lift from my shoulders but everything changed for the better once we were able to disclose his diagnosis," Heming Willis said in a video shared Tuesday by The Association for Frontotemporal Degeneration at their 2024 Education Conference.

"I was able to see the support that I so desperately needed for my husband, for our whole family," the 45-year-old added.

Angela Weiss/AFP via Getty Images, FILE
Actor Bruce Willis and his wife English model Emma Heming attend the premiere of Universal Pictures' "Glass" at SVA Theatre on Jan. 15, 2019 in New York City.

Actor Bruce Willis was diagnosed first with aphasia in 2022 and then about six months later, he received an additional diagnosis of FTD, according to his family.

"Since we announced Bruce's diagnosis of aphasia in spring 2022, Bruce's condition has progressed and we now have a more specific diagnosis: frontotemporal dementia (known as FTD)," Willis' family said in a statement at the time. "Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis."

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According to the Centers for Disease Control and Prevention, FTD is a common type of dementia marked by personality and behavior changes as well as problems with language skills, such as speaking or understanding words. According to the National Institute of Aging, people with FTD may not be able to control their behaviors and lack awareness of their illness.

Heming Willis, who shares two daughters with Willis and is a stepmother to Willis' three older children with actress Demi Moore, has been vocal on social media since then about sharing their family's experience and her own experience as a caregiver.

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"There were so many reasons to go public but first and foremost, it had been so isolating and you know, I was trying to keep it quiet and really, it was about our daughters and … I never wanted them to think that this was some kind of family secret that we had to keep," Heming Willis told the audience at the AFTD 2024 Education Conference. "I felt like it was very important for us to come out and say what it was."

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Heming Willis is in the process of writing a book about caregiving, which is expected to be published in 2025 by publishing imprint The Open Field.

"I want this book to land in the hands of care partners, but especially new care partners, who have just received this life-changing news," she said in a February statement upon the announcement of the upcoming book. "They should know they are not alone and there is support, even hope."