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Barrow Neurological conducts FTD Study, the same dementia affecting actor Bruce Willis

Last month, the family of actor Bruce Willis announced that he has frontotemporal dementia, or FTD. It’s a lesser known type of dementia, which means research is limited. But some of that work is happening here.

Dr. Anna Burke is the director of the Alzheimer's and memory disorders division at Barrow Neurological Institute. She says FTD is relatively rare.

"It only constitutes about 3% to 5% of all dementias. However, it is the most common dementia for people under the age of 65," Burke said. 

FTD can affect a person’s behavior. It also affects language. Still, FTD is not as common as Alzheimer’s, leaving patients and their families without many options when it comes to studies. That’s changing at Barrow.

"So we have this clinical trial of a medication to hopefully, slow or ultimately halt or prevent a certain type of FTD with a genetic mutation called the progranulin mutation," Burke said. 

According to the Association for Frontotemporal Degeneration, FTD is often misdiagnosed, such as Alzheimer's or depression. And it can take upwards of three years to receive a diagnosis of FTD. 

"Barrow is one of a handful of centers around the US that are part of a study called the Alector study. And this is a study for individuals who have a genetic mutation called a pre progranulin mutation," Burke said. 

Burke says that mutation predisposes a person to developing Frontotemporal dementia. 

KJZZ senior field correspondent Kathy Ritchie has 20 years of experience reporting and writing stories for national and local media outlets — nearly a decade of it has been spent in public media.