WALTHAM, Mass — Caring for a loved one diagnosed with frontotemporal dementia can be complicated.
But there are resources available, including the local chapter of the Alzheimer’s Association in Waltham.
With famed actor Bruce Willis’ devastating FTD diagnosis, the local chapter of the Alzheimer’s Association is getting more calls to their helpline. They want families to know, not only is it important to remove the stigma but let organizations like theirs help you, help your loved ones facing such a difficult battle.
Susan Antkowiak is the vice president of programs and services for the Alzheimer’s Association, MA/NH chapter.
“What incredible courage. their bravery means that others know it’s okay and that’s important. important for individuals to know they’re not alone.”
Boston 25 News sat down with Susan Antkowiak, with the local chapter of the Alzheimer’s Association about the frontotemporal dementia diagnosis of legendary actor and father of five, Bruce Willis. She says there are similarities with Alzheimer’s but FTD is different.
“There is a buildup of certain proteins in the brain and it ends up impacting people’s motor skills, judgment and sometimes we can see changes in personality. But sometimes we see losing language skills is a hallmark for FTD and that’s what we’re seeing,” Antkowiak added.
FTD Antkowiak adds is likely underdiagnosed, with roughly 50,000 to 60,000 people suffering across the U.S.
“There’s not a pill or pharmacological approach to help people with frontotemporal dementia, but the more you know how it impacts the person the more tools you have at your disposal to really adjust the world around that person and minimize struggles and bring out a very predictable safe, secure environment.”
“The Willis family now knows what they’re dealing with, she says, allows for information, education and support from organizations like the Alzheimer’s Association.
“Simple language not being too complicated when you talk to the person, maybe using visual cues or gesturing to a person what you’d like them to do as opposed to relying just on your verbal language,” said Antkowiak. “Patience is important, I need to think differently about my expectations of the individual.”
Like showing, instead of telling.
“What we want to do is remove this stigma so Willis’ family being able to be the face of this disease gives people’s permission to share their story, talk about what’s happening and to get help come to the Alzheimer’s Association, the FTD association.”
FTD experts say unfortunately does have a faster progression than most cases of Alzheimer’s.
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