Bruce Willis was diagnosed with frontotemporal dementia (FTD) in February, and since then, his family has been vocal about caring for the actor.
His wife, Emma Heming, has seemingly taken on the role as his primary caregiver, and in new videos discussing the disease, she opened up about how much she’s struggled with it, even admitting that she’s been freaked out.
In honor of World FTD Awareness Week, which concluded on Sunday, Heming conducted a series of interviews that she shared on her YouTube page. She spoke with medical professionals and fellow caregivers about this specific type of dementia, and for her final interview, she spoke with Maria Kent Beers and Rachael Martinez, two women who co-host a podcast about FTD called “Remember Me.”
Beers and Martinez each had a parent who suffered from this type of dementia, and for most of their conversation, Heming was content to simply ask questions and let the other women tell their stories. At one point, she did feel moved to share a bit of her own.
“You guys have been such a resource to this community,” she said, “and I know that because you have been such a resource for me. You know, when this diagnosis of FTD was brought to the table, I didn’t know where to go, what to look up…”
She continued, “You know, I’m looking things up, it’s freaking me out.”
Heming decided to see if there were any podcasts available on the topic, and while she wasn’t able to find much, she did find them.
“I am so grateful to be able to hear other people’s stories. You know, there are some that maybe I don’t connect to, but you have the sort of shared story, so you guys have been so helpful to me.”
Following the wrap-up of her interview series, Heming took to Instagram to share a new video with her followers, telling them that while the official week was over, “Our work does not stop there. I feel like I’m just scratching the surface.”
“I have so many whys, as to why I raise awareness,” she went on, “but really, at the end of the day, what I would love to see is a cure, a treatment for this disease. And if we don’t raise our voices, they’re just going to run right past us.”
In another video she shared in the same post, she added another message, because, as she explained, “now I’m annoyed.”
“When doctors or media talk about dementia, they’ll say ‘Alzheimer’s and other dementias.’ So FTD is the other dementia, and let me tell you something about that disease: it is real, it is out there, and it will bring you to your knees.”
She said, “I think that is an absolute disservice and absolutely disrespectful for these ‘other dementias’ just to be put in that category, I think it’s really important for us to know what these diseases are, like vascular, like Lewy body, like FTD, and, you know, call it what it is because that is where the confusion lies… I do not want to see this disease and our ‘other dementias’ swept under the rug anymore.”
According to the Alzheimer’s Association, FTD differs from Alzheimer’s in a number of ways. While Alzheimer’s is known for affecting a person’s memory, it’s much more common for FTD to begin manifesting with behavioral changes and speech problems.
Last month, Heming made an appearance on the “Today” show, where she discussed her family’s situation, saying, “What I’m learning is that dementia is hard. It’s hard on the person diagnosed. It’s also hard on the family. And that is no different for Bruce or myself or our girls. And when they say that this is a ‘family disease,’ it really is.”
The couple share two daughters, Mabel, 11, and Evelyn, 9. Willis is also father to three daughters he welcomed with ex-wife Demi Moore.
“We’re a very honest and open household,” she said. “The most important thing was… to say what the disease was. Explain what it is because when you know what the disease is from a medical standpoint, it sort of all makes sense,” Heming said of disclosing her husband’s diagnosis to the couple’s children.
“So, it was important that we let them know what it is because, you know, I don’t want there to be any stigma or shame attached to their dad’s diagnosis or for any form of dementia.”
“This is not what I would want for them,” Heming said of her young daughters growing up with an ill parent. She also said that “it’s teaching them so much – in how to care and love.”
“It’s a beautiful thing amongst the sadness,” she added.