Emma Heming Willis is focusing on joyful moments amid her husband Bruce Willis’ battle with frontotemporal dementia.
“We have still so many beautiful moments of joy and connection, and I think that’s really important to share because I think there’s such a negative narrative around dementia,” Emma said on the new MS NOW talk series BECAUSE WE CARE WITH RICHARD LUI, per Entertainment Weekly. “We need to be careful and reframe that. When we think about that or don’t want to talk about dementia and put it in a corner, the person living with the disease and their caregiver aren’t seen; they aren’t supported.”
She continued: “It’s important to know that it’s hard and it’s a terrible disease, but we have so many moments of joy and connection that aren’t your norm, but it’s okay. We’ve learned to adapt and show up for Bruce.”
Heming Willis stepped into the role of Bruce’s caregiver following his FTD diagnosis in 2023. She channeled the lessons she’s learned along the way into her 2025 book The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.
Written specifically to encourage other caregivers, Heming Willis shows “you how to care for yourself while doing one of the hardest, most heartbreaking jobs in the world. Because if you don’t take care of yourself, you are not going to be able to look after anyone else — especially your loved one with dementia.”
She’s found it helpful for herself, too. In a recent Instagram video, she revisited an especially impactful chapter that deals with feelings of guilt.
“I wanted to revisit the section in my book. It’s in the chapter called ‘Expect an Array of Emotions.’ ‘There’s so much guilt that comes with being a caregiver. For me, it was and can still be a persuasive feeling creeping in and visiting me daily,’” Heming Willis read from the book.
Related: Bruce Willis Doesn’t Know He Has Dementia…and That’s a Good Thing
The book leans on the expertise of a dementia care specialist named Teepa Snow.
“Not carrying around guilt is super vital for care partners because feeling guilty just distracts you from care and life,” Snow said in the book.
Heming Willis added that she feels that guilt can be a “roadblock” that keeps caregivers from caring for themselves.
Though guilt is something she is “always carrying,” she’s learned “that it is really not helpful. What I know is I always go back to what would my husband want for me?” she told PEOPLE last month.
Heming Willis doesn’t deny how hard Bruce’s disease is on her and their family, but she’s pushing back on the idea that hardship and joy can’t coexist. Speaking openly, even about the messy or painful parts, is what makes room for connection to keep happening.
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