Emma Heming Willis paid tribute to her husband Bruce Willis during World Frontotemporal Dementia Awareness Week and vowed that his diagnosis won’t “be in vain” as she continues to bring awareness to the disorder.
Willis was diagnosed with frontotemporal dementia (FTD) in February 2023, which is an umbrella term for a group of rare disorders that most often affect the parts of the brain associated with personality and behaviour, according to the Alzheimer Society of Canada.
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.
Heming Willis took to social media during World FTD Awareness Week, which is recognized from Sept. 28 to Oct. 4, and wrote, “I can’t go through World FTD Awareness Week without talking about Bruce. He is the driving force behind my advocacy.”
“He has opened so many doors for me in this work, and I will continue to walk through them. I will not let his diagnosis be in vain. I know how proud he would be to know that he is helping families living with FTD, other forms of dementia and their care partners be seen and heard,” she continued.
“In this next chapter of his life, Bruce continues to build on his legacy. He is, and always will be, a f—ing legend. And I am so proud to be his wife,” her post concluded.
Willis’ daughter Scout LaRue Willis commented on Heming Willis’ post, writing, “I’m so proud of you I love you so much Emma.”
Willis’ family first announced that he had been diagnosed with FTD in February 2023 in a statement on the Association for Frontotemporal Degeneration website.
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“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.”
FTD is 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.
Last month, Heming Willis, who launched the Emma & Bruce Willis Fund for Dementia Research and Caregiver Support, spoke about the ongoing grief her family experiences as her husband continues to live with FTD during an interview with Hello! Magazine.
“It is extremely difficult and painful,” Heming Willis said. “It’s natural, we all want our loved ones to be healthy, full of life and being the person they always were. But FTD is a devastating illness that steals things from you very slowly. So the reality is that you find yourself constantly in a state of grief.”
Heming Willis shared that the family still has a life full of happiness and humour regardless of the diagnosis.
“Just because someone receives a dementia diagnosis – in whatever form – it doesn’t mean their life is over or that the lights have been turned off completely,” Heming Willis said. “There’s still so much fun to be had, so much laughter, and so much connection waiting for you.”
Heming Willis has been very open about her daily struggles as a spousal caretaker for Willis but she said that it is giving their daughters, Mabel, 14, and Evelyn, 12, a “masterclass in pure love.”
“It’s a really delicate balance to strike. Guiding them through something like this – through any serious illness, really – is an enormous challenge. But despite how tough things get, I always try to remind myself that it could be so much worse,” she said.
“At the end of the day, what our daughters are experiencing and witnessing at home every single day is a masterclass in pure love,” Heming Willis continued.
“They see how much we support their dad, how deeply we love him and how we stand by him through thick and thin.
“It’s wonderful for them to see everyone rallying together: family, friends… absolutely everyone has formed a protective ring around him,” she added.
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
