Hope for the Most Common Form of Dementia in Younger People

Remarkable strides are happening to help combat a disease that affects a group of people you may not expect.

Frontotemporal dementia, FTD, is the number one form of dementia in people younger than 60.

Unlike Alzheimer's disease, which affects the memory, FTD affects behavior and personality, making patients act in bizarre behaviors, sometimes becoming unrecognizable to their loved ones.

Beth Anderson, 48, was a busy mother of two in Dallas with a successful interior design career, when she was diagnosed with FTD.

"She would say really odd things," said her husband Scott, who noticed small changes in Beth's behavior a year before her diagnosis.

He said Beth, who received a full academic scholarship to Clemson and has her master's degree in architecture, began to have trouble speaking, wasn't making sense during conversations and couldn't complete tasks that were once so easy.

"She's having trouble doing simple things like putting attachments on emails and writing clearly," Scott said. "She always seemed nervous and anxious and I think she knew something was going on, something was changing, but she didn't know how to communicate it."

He said at one point, her behavior was so bizarre, her friends thought she was on drugs.

He said when she struggled at work and eventually lost her job, he took her in for further medical testing, which revealed FTD.

"People are in just disbelief, you know? How can she, at 48, have been diagnosed with early onset dementia," he said. "I mean, that's maybe 60, but not 48."

With FTD, proteins build up and erode the brain's frontal and temporal lobes, which control language, personality and judgment.

It's rare, and normally affects younger people.

Beth cries for seemingly no reason, but then cracks up at the smallest things.

"In many cases, patients may go months or even years being misdiagnosed as either having a psychiatric condition or as having a different type of dementia such as Alzheimer's disease, which can be a real challenge for their families," said UT Southwestern professor of neurology Dr. Brendan Kelley.

Kelley said there was no treatment or cure for FTD, which will eventually cause a patient's bodily functions to shut down. However, he said scientists around the world have made big breakthroughs in understanding the disease -- including what causes it.

"That is a huge advanced forward in our understanding of developing treatment, both to correctly diagnose and identify FTD, and also to develop medicines that will hopefully be effective in slowing or stopping the accumulation of those proteins and thus stopping the progression of the disease," Kelley said.

He said treatments could be in the near future and that's hope for the Andersons, even though only time will tell.

Beth is not as talkative as she once was, but her memories are still in tact.  
Her young daughters, Ava and Allie, help keep her focused and active.

"It's kind of like how she used to take care us. Now we are taking care of her," Ava said.

"Dementia is part of our life now, but the real Beth is still in there. That gives us all happiness. We know she's still there," Scott said.

FTD represents 10%-20% of all dementia cases. 

Most patients are diagnosed between the ages of 45 and 60.