- Frontotemporal dementia is the leading type of dementia for people under the age of 60.
- Experts tell me it is often misdiagnosed as it presents itself as personality or behavioral changes.
- Watch the video below to find out how this FTD is affecting one Northwest Tallahassee family and what's on the horizon for FTD research.
BROADCAST TRANSCRIPT:
Frontotemporal dementia is the most common dementia for people under 60, say experts, but it's often misdiagnosed as mental health conditions. That's because it can impact behavior and personality. I'm finding out more about FTD, why it can take an average of 3.6 years to be diagnosed, and how it's impacted the lives of one Northwest family.
Larry Davis tells me FTD has completely changed his life.
"After I retire, I thought we could go out and travel a lot and do whatever we wanted," said Davis. Now he tells me he's on medication to manage behavioral changes caused by the disease.
"Short-tempered and I'd blow up and just about anything. If somebody ticked me off, you better get out of my way," said Davis.
Betty, his wife, said it's put a strain on their family. "Our sons are estranged from us because of his behavior," said Davis.
They've struggled to explain it to friends and family.
Susan Dickinson, CEO of The Association for Frontotemporal Degeneration, said one of the hardest thing about this disease is that it's, "very commonly misdiagnosed. We see depression, we can see schizophrenia, bipolar disease, sometimes Alzheimer's, if there's a movement component sometimes Parkinson's," said Dickinson.
Katie Fahrenbruch with the Alzheimer's Association said that's because it's more common with 60-80% of people with dementia having Alzheimer's.
"Sometimes it's easy to jump into that Alzheimer's pool if we don't pay enough attention to the symptoms we're actually seeing," said Fahrenbruch.
That's why experts including Neuropsychologist Allison Moltisanti at Tallahassee Memorial Healthcare said it's important to raise awareness about the disease.
"People have been asking more questions about it and I have seen more patients know what it is," said Moltisanti. Dickinson said there is hope in research, so while there's no cure yet, she said AFTD have plans for 2024.
"To launch a major advocacy campaign to really help policy makers understand the special needs of especially younger people who suffer from some form of dementia," said Dickinson.
Looking back on the last 2 years, Betty shared what has kept her family strong.
"It takes a lot of patience, a lot of patience," said Betty.
AFTD tells me multiple potential treatments are currently in clinical trails for FTD. They hope approved therapies are on the horizon. If this story has peaked your interest and you're looking for more information, you can find links on my web story at WTXL.TV. You can also share your story with me email: Maya.Sargent@wtxl.tv or via text at 850-509-3271. I'd love to hear from you.
RESOURCES:
The Association for Frontotemporal Degeneration (AFTD)
FTD Diagnostic Checklists
AFTD Helpline: 866-507-7222 or info@theaftd.org
Alzheimer's Association: 800-272-3900 (24/7 hotline) or alz.org
