Emma Heming Willis Shares Hardest Part of Bruce Willis’ Dementia Battle (Exclusive)

When Bruce Willis was diagnosed with frontotemporal dementia, it wasn’t just emotionally devastating for his wife Emma Heming Willis and their family, it also thrust Emma into a caregiver role she never imagined. 

Now, she’s sitting down with “Extra’s” Alecia Davis in Washington, D.C., as she receives the Tom Hanks Caregiver Champion Award from the Elizabeth Dole Foundation. 

Emma opened up about how Bruce is doing, saying, "I think all things considered, he's doing really well with a very unkind disease. You know, he is surrounded by so much love and care and support as well as the rest of our family. And I think that he’s doing okay.”

She said of Bruce’s inner circle, "I think we all show up for Bruce in our own special way, you know, and Bruce has such a big family that goes outside our blended family. You know, his mother, his brother, his sister, his friends, you know, all really show up for him."

Heming later added, "I am grateful for the way our family and friends show up for Bruce. You know, I think I'm really grateful to see just the love and the care that we are able to put around him is something I think is really beautiful."

Alecia asked if Bruce has good days and bad days, and Heming replied, “It’s very, very similar to us having a good or bad day.”

As for the most challenging part of this journey, she said, "I think rewriting our life. You know, we had such plans for the future and I think that's probably been the hardest to digest."

She does have a support system, saying, "For me now, it's really about leaning into community. No one really wants to be a part of the community, but when you do come into it, they welcome you with open arms and they've been so helpful and so supportive and so loving.”

Emma has made it her mission to give back to other caregivers through social media and her book “The Unexpected Journey."

She told Alecia, "When we received our diagnosis, we walked out of that doctor's appointment with no resources, no road map, just to check back in a couple of months. So, I realized really quickly how caregivers are unseen and unsupported. Over time, I was able to put some experts and specialists around our family that we have the privilege to have access to and I realized that I was sitting on really valuable information and I wrote the book that I wish someone would have handed me that day.”