Frontotemporal dementia, known as FTD, is a rare disease that doesn't have any FDA-approved medicines to treat it or a cure, at least not yet.
The Association of Frontotemporal Degeneration is actively researching and spreading awareness.
The AFTD says there are about 50,000 to 60,000 people in the country who are living with it.
The organization was founded in 2002 by families dealing with the disease.
They say that number is most likely higher as FTD is a disease that's often misdiagnosed.
Unlike Alzheimer's, this form of dementia is not a memory disorder, rather it affects more with decision-making and behavior.
"They lose language, they lost their ability to control their behaviors or to perform the executive tasks that a lot of us do each day," said Susan Dickinson, CEO of the AFTD.
The disease can also cause movement conditions similar to Parkinson's or ALS.
On average it takes four years for a proper diagnosis.
Dickinson says that FTD is the most common form of dementia in people under 60 and has been diagnosed in people from their late 20s to 80s.
The organization is working hard to develop more research and medicine with the goal of creating a cure.
"It is the most hopeful time we've had," Dickinson said. "We have five or six clinical trials currently running, currently recruiting for people. So, a number of different therapeutical strategies have been developed by pharmaceutical companies and are currently being tested."
The disease has impacted at least one family in our area.
We spoke with Scott Oxarart, whose father, Steve, passed away from FTD just last year.
Oxarart said that watching the father he once knew change right before his eyes was one of the hardest things he's ever had to go through.
"My dad was an amazing guy," he said.
Oxarart says his dad was a huge Nevada Wolf Pack and Southern California sports fan.
He loved cars, barbecuing, gardening, and planning projects.
The two were really close.
"I mean the guy was always there," Oxarart said. "He was at all my games. I could tell him everything."
The son says his dad was very attentive to detail.
Until 2018, when he started to act differently.
"We started to notice little changes in his behavior, his decisions, and some of the things he was saying," Oxarart said.
After some time, things started to trend in the wrong direction.
"Unfortunately, this FTD, this dementia, really transformed him to the worst."
Oxarart says his dad couldn't control his impulses.
His dad would eat a box of cookies in one sitting and had eight gallons of ice cream in the fridge.
Then the delusions started to take over.
"He was even sadly telling my mom, like, 'Hey I'm going to go on a date with a girl,' which wasn't true," Oxarart said. "He wasn't going anywhere."
One time, his dad called 911, saying there was a dead body in his room.
"SWAT team came and came guns blazing ready to look for a murderer and they got into the room and there was no one in there."
In 2021, his dad was officially diagnosed with FTD.
It's often misdiagnosed as there is no blood test available for it.
"You know, the families are left wondering what happened to my loved one. What happened to my dad."
Oxarart recommends for people who may be concerned if their loved one has FTD to have them checked out by a neurologist.
He says watching his dad change from the man he once knew was devastating.
"It is difficult, and my mom and I had to remind each other that was not my dad saying that. That was not my dad doing that. It's the dementia doing that."
The more the dementia set in, Oxarart's dad couldn't swallow anything.
They knew he only had days left.
He was at home with his family bedside, listening to Tom Petty, his favorite band.
On August 7th of last year, Oxarart's dad passed away.
After years of dealing with his dad's disease, he says he's still grieving.
"When you start to lose someone to dementia, and FTD specifically, it's a long road of their downfall."
Oxarart says he still sheds tears to this day, thinking about his dad and what happened.
"Grandkids are growing up, you know. All the adventures he could've taken his wife on, and his other families and he just doesn't get to do it. That's the hardest part to process."
Oxarart now volunteers with the AFTD, hoping to help them as they research and spread awareness about the disease.
This month, the organization has its With Love Campaign, to share stories just like Oxarart's dad's.
They are accepting donations to help fund their research efforts.
If you would like to contribute or learn more about FTD, you can visit their website below.
AFTD - The Association for Frontotemporal Degeneration (theaftd.org)
