Emma Heming Willis speaks out about finding community as a caregiver: ‘This journey can feel very dark’
By Marianne Garvey, CNN
Emma Heming Willis is trying to raise awareness about her husband Bruce Willis’ diagnosis of frontotemporal dementia, known as FTD.
Heming Willis chatted live on Instagram with Susan Dickinson, the CEO of The Association for Frontotemporal Degeneration, on Monday, where she talked about looking for support following the actor’s diagnosis.
“I came [to you] with a need of community and you provided that,” Heming Willis said to Dickinson, adding that it’s become important to her “to be able to connect to other families that are on this journey.”
In February, after Willis had retired from acting, his family shared he had been diagnosed with frontotemporal dementia.
“Since we announced Bruce’s diagnosis of aphasia in spring 2022, Bruce’s condition has progressed,” the Willis family said in a statement at the time. “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.”
Heming Willis asked Dickinson why it often takes so long to get a diagnosis for the disease, with Dickinson telling her, “it’s a strange group of symptoms and there is no one way it starts.”
“Where can people on this journey go to be able to find support programs?” Heming Willis asked.
Dickinson explained the ways AFTD seeks to offer information by providing a helpline with professionals and regional resources.
The site also is a homebase for the family’s statement about Willis as they work to raise awareness about FTD.
“We felt it was important to live on the site because there is so much information out there,” Heming Willis explained Monday.
She signed off telling Dickinson, “We are so grateful for the services you provide and how you have helped our family.”
“This journey can feel very dark and there is not a cure, so sometimes it feels like you’re just free falling,” she added.
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