It’s the second most common form of dementia after Alzheimer’s disease, yet you’ve likely never heard of it.
It’s called frontotemporal dementia.
The disease attacks people much earlier in life. Some are as young as their 20s.
For Lauren Rowans, preparing for long-term care for her 44-year-old husband, Tim Rowans, was not something she had in mind, especially not this early in life.
When we met Tim Rowans, he focused very heavily on the Action News Jax camera. At times, he even got up and started zooming it in.
He wasn't just playing around, though. There’s a reason he was so interested.
“He was a professional photographer, very artistic,” said Lauren Rowans. “Tim was everybody’s favorite person. He was always the funniest man in the room.”
Now their life is completely different.
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Tim Rowans was diagnosed with frontotemporal dementia last summer.
Lauren Rowans started noticing a change about four years ago after the birth of their second child.
“Not being as active, being a little more withdrawn,” She said.
Today, Tim Rowans barely speaks and spends most of his time on the couch staring into space.
Dr. Nilufer Ertekin-Taner a Professor of Neurology at Mayo Clinic, said FTD impacts tens of thousands of people in the U.S. alone.
Right now, Mayo Clinic is working on trying to find a cause.
“Unfortunately, right now we do not have therapies that can stop this disease, that can turn back the clock,” said Ertekin-Taner.
According to Ertekin-Taner, the fact that FTD impacts younger people could delay a proper diagnosis.
“It is a very big concern because of the very young age of onset. One might not even think that that patient might have a form of dementia,” she said.
As time passes, symptoms only get worse, eventually leading to death.
Lauren Rowans said she’s already grieving her husband even though he’s still alive.
“We’ve been grieving the loss of him a lot longer than other people that aren’t as close,” she said.
The couple has two children, who they have had to explain what’s wrong with their dad.
“Our son, Pierce, we’ve been very open about it, even before the diagnosis, just because he remembers the old daddy,” said Lauren Rowans.
Lauren Rowans prefers to call the disease frontotemporal degeneration instead of dementia which she believes can lead to misconceptions.
She said Tim Rowans still knows who his family is.
Every now and then, you can see a glimmer of the old Tim Rowans. During our visit he briefly started dancing along with his father-in-law.
“Last week, 'Hotel California' came on, and he sang every word,” said Lauren Rowans.
She said she’s prepared for the day that those glimmers fade away forever.