Emma Heming Willis Marks World FTD Awareness Week With a Rare Photo of Bruce Willis (71)
Frontotemporal dementia is still far less understood than Alzheimer’s disease, which is why awareness weeks matter so much to the families living with it. FTD is the most common form of dementia in people younger than 60, and it mainly affects social behavior, language and communication. It can also affect personality and movement, because it involves the frontal and temporal lobes of the brain.
For Bruce Willis’s family, that reality became public in 2022. The family announced that the ‘Die Hard’ star had been diagnosed with aphasia, a condition that affects the ability to communicate, and he retired from acting. A year later, in 2023, the diagnosis was updated to frontotemporal dementia.
Since then, his wife, Emma Heming Willis, has become one of the most visible voices for patients and families. She marked World FTD Awareness Week this week with an Instagram post that included a rare new photo of Bruce enjoying the sun. “I can’t go through World FTD Awareness Week without talking about Bruce,” she wrote.
She went on to call him the driving force behind her advocacy. She said he has opened many doors for her in this work and that she will continue to walk through them. She also wrote that, in this next chapter of his life, Bruce continues to build on his legacy.
The post also looked to the families watching. Heming Willis said she knows how proud her husband would be to know that he is helping families living with FTD and other forms of dementia, along with their care partners, be seen and heard. She vowed that his diagnosis would not be in vain, as the outlets covering the post noted.
That commitment has shaped much of her recent work. Her 2025 book, ‘The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,’ grew out of the day of Bruce’s diagnosis, when the family was given only a pamphlet and told to check back in a few months. She has called it the book she wished she had been handed on that day. She is also a co-founder of Make Time Wellness, a brand devoted to women’s brain health.
The recognition has followed. Heming Willis has continued to work with the Association for Frontotemporal Degeneration and is set to accept its Susan Newhouse & Si Newhouse Award of Hope in 2026 for her work. She has also spoken about her preference for the term care partner over caregiver.
Her messages have often balanced difficulty with hope. In an interview about a month ago, she said her family still has many beautiful moments of joy and connection, and that she wants to push back on the negative narrative around dementia. She has also stressed that FTD is not Alzheimer’s, a common misunderstanding.
For readers new to the topic, her post is a reminder of why these weeks exist. Better public understanding can mean earlier recognition, more resources for care partners and a little less isolation for families. And for one family, it is also a chance to share a quiet photo of a man in the sun.
What do you think of Emma Heming Willis’ message during World FTD Awareness Week?
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