For the first time since her husband, action star Bruce Willis, was diagnosed with dementia, Emma Heming Willis is sharing her journey as a caregiver in an exclusive interview with TODAY co-anchor Hoda Kotb.
The mother of two and Make Time Wellness founder joined TODAY on Sept. 25 to kick off World Frontotemporal Dementia Awareness Week, alongside CEO of the Association for Frontotemporal Degeneration Susan Dickinson. Bruce Willis' family shared that he'd been diagnosed with the condition earlier this year.
During the conversation, Heming Willis shared an update on Bruce Willis' health and life with frontotemporal dementia — and what she wants people to know about caring for loved ones with conditions like these.
His wife, Emma Heming Willis, said on NBC's "TODAY" show Monday: “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.”
Heming Willis called herself a "care partner" and said her household has been "open and honest" about the disease.
“The most important thing was to be able, for us, 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," she explained. "It was important that we let [our daughters] know what it is because I don’t want there to be any stigma or shame attached to their dad's diagnosis or any form of dementia."
FTD is a group of disorders caused by a buildup of tau and other brain cell destroying proteins in the brain’s frontal lobes (behind your forehead) or temporal lobes (behind your ears). The condition typically strikes between the ages of 45 and 64, according to Alzheimer’s Research UK.
“The most common dementia for people under 60, FTD can cause challenges in communication, as well as changes to one’s behavior, personality, or movement,” according to a statement from the Association for Frontotemporal Degeneration.
People with FTD typically live six to eight years with the condition, according to the US National Institute on Aging. Between 10% and 30% of FTD cases are inherited. Other than genetics, there are no other known risk factors, although researchers are investigating what role the thyroid and insulin may play in the onset of the disease.
Heming Willis said theirs is "a very honest and open" household – "I wouldn’t want there to be any stigma or shame for their dad's diagnosis or any form of dementia" – and noted how her husband’s condition has impacted their daughters.
"He is the gift that keeps on giving. Love, patience, resilience. So much that he's teaching me," she said. "And it's teaching (our kids) so much. How to care, how to love. It’s a beautiful thing amongst the sadness."
“Dementia is hard. It’s hard on the person diagnosed – it’s also hard on the family,” Heming Willis said. “And that is no different for Bruce, or myself, or our girls. When they say this is a family disease, it really is.”
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