Emma Heming Willis has announced the launch of the Emma & Bruce Willis Fund for Dementia Research and Caregiver Support in honour of her husband Bruce Willis, who was diagnosed with frontotemporal dementia in February 2023.
Heming Willis, 47, shared the news of the charity during her acceptance speech for an award at the Association for Frontotemporal Degeneration’s Hope Rising Benefit in New York on Thursday.
The research fund, housed at the Entertainment Industry Foundation, “works to confront frontotemporal dementia by raising awareness, funding promising research, and supporting caregivers,” according to its website.
“The Emma & Bruce Willis Fund is a grant-making organization that supports an ecosystem of grantees that work in our core areas: raising awareness by deepening understanding of frontotemporal dementia (FTD) caregiving and brain health through education and advocacy, funding promising research and accelerating discovery by catalyzing promising scientific research and supporting early-career scientists who are working to accelerate discovery and supporting caregivers by providing resources, practical tools and opportunities for respite,” the website adds.
Heming Willis accepted the award on behalf of herself and her husband, 70, who stepped back from acting in 2022 after being diagnosed with aphasia, a brain disorder that leads to speaking, reading and writing problems.
“This journey has opened my eyes to the realities so many families face when a loved one is living with frontotemporal dementia,” Heming Willis said. “I believe deeply in the importance of supporting research while also showing up for the caregivers who carry so much every day.
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“Through this fund, my hope is to help deepen understanding of FTD and ensure families facing it feel seen, supported and less alone. Bruce has always led with generosity and heart, and I know he would be proud to see this effort helping families facing this disease.”
Willis’s family first announced that he had been diagnosed with frontotemporal dementia in February 2023 in a statement on the Association for Frontotemporal Degeneration website.
“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). 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,” his family said in a statement.
“Today there are no treatments for the disease, a reality that we hope can change in the years ahead. As Bruce’s condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research.”
According to the Alzheimer Society of Canada, FTD is an umbrella term for a group of rare disorders that most often affect the parts of the brain associated with personality and behaviour.
There are different types of dementia, and the frontotemporal form affects regions in the front and sides of the brain. Because it causes problems with behaviour and language, aphasia can be a symptom, according to the organization.
It’s caused by damage to neurons, the brain’s information carriers, but the underlying reasons for a particular case are often unclear, according to the Mayo Clinic. People with a family history of the condition are more likely to develop it. It’s rare and tends to happen at a younger age than other forms of dementia, between ages 45 and 65.
Symptoms can include emotional problems and physical difficulties, such as trouble walking. Symptoms tend to worsen over time, though progression varies by person.
Unlike in Alzheimer’s disease, people with frontotemporal dementia often remain conscious of time (for example, what year it is) and memory is not of concern in the early stages.
In the later stages, general symptoms of dementia can arise, including confusion and forgetfulness. Motor skills are lost and swallowing difficulties occur.
Heming Willis has been very open about her daily struggles as a spousal caretaker for Willis.
In August 2023, Heming said she made a conscious effort every day to avoid the “doom and gloom” that comes with caring for a loved one with dementia. She said she was doing the best she could to take care of Willis while trying to maintain her own well-being.
The model filmed her “care partner PSA” in her car after a hike.
“I know it looks like I’m out living my best life,” Heming Willis said. “I have to make a conscious effort every single day to live the best life that I can. I do that for myself. I do that for our two children, and Bruce, who would not want me to live any other way.”
Through tears, Heming Willis said she did not want people to falsely assume that she is “good.”
“Because I’m not. I’m not good,” she said. “But I have to put my best foot forward for the sake of myself and my family, because again, when we are not looking after ourselves, we cannot look after anyone that we love.
“I am just doing the best that I can, always.”
— With files from Global News and The Associated Press
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