After her husband, Bruce Willis, was diagnosed with frontotemporal dementia (FTD), Emma Heming Willis started working to raise awareness, support other caregivers and families impacted by dementia, and educate people on what FTD really is.
During a recent podcast appearance, she revealed that there’s one significant thing that people often don’t understand about Bruce’s diagnosis: it’s not really about memory loss.
Over the past few years, people have frequently asked how Bruce is doing.
His loved ones have said this is a difficult question to answer. They often say he’s doing well or OK, considering the fact that he is living with FTD. At the same time, things have obviously changed for their blended family (Bruce has three adult daughters whom he shares with Demi Moore, along with two younger daughters he shares with Emma).
Because Bruce hasn’t really been spotted in public after his diagnosis, fans have not witnessed exactly how the condition has impacted him. And according to Emma, a lot of people incorrectly assume that Bruce suffers from memory loss, when, in reality, Bruce’s variant of FTD “affects language.”
During an appearance on The Bossticks podcast, Emma explained, “When people say, ‘Oh, you know, does he remember who you are?’ Well, he does because he doesn’t have Alzheimer’s; he has FTD. I think that’s a very common misconception that, when you think of dementia, we think of memory loss.”
She explained that Bruce does not have Alzheimer’s.
However, she seems to understand where people’s confusion comes from. After all, Alzheimer’s is the most common form of dementia (about 60% to 80% of people diagnosed with dementia have it).
FTD is much less common. But it is the most common type of dementia in younger people (under age 60). Bruce was 67 years old when his family announced that he had been diagnosed with FTD.
FTD tends to affect personality, behavior, and language before affecting someone’s memory, according to the Mayo Clinic. The symptoms are commonly mistaken for a mental health condition. Previously, Emma revealed that she mistook Bruce’s earlier symptoms as a sign of marital problems.
“It’s different [from] Alzheimer’s,” she said on the podcast. “And Alzheimer’s is the most common form of dementia, but FTD is the most common form of dementia for people under the age of 60.”
Of course, that doesn’t mean it’s easy to deal with.
Emma got vulnerable when talking about the grief she has experienced. “It’s grieving someone who is alive,” she said. “And that is what many people who are caregivers to someone with dementia experience, because your person is there physically but maybe not mentally or emotionally.”
She added, “You are consistently in grief. I’ve just learned how to navigate it. Maybe I’m a little bit more used to it at this point than I was early on. But yeah, you are just sitting with it and moving alongside of it.”
Emma also said that all forms of dementia “take and they take and they take, sometimes very slowly and you are grieving different losses all the time.”
