IOWA COUNTY, Wis. - It’s the cruelest disease you have never heard of. It’s a form of dementia called frontotemporal degeneration.
In the U.S., there is growing understanding that not all dementia is Alzheimer’s disease. However, what too few people realize is that dementia can impact younger adults.
FTD is the No. 1 form of dementia in Americans under the age of 60. It attacks the frontal and temporal lobes of the brain, affecting speech and personality, and it’s frequently misdiagnosed as depression.
The majority of cases occur in patients between 45 and 64 years old.
There is no treatment and no cure.
With FTD, people either display such bizarre behavior that their loved ones can hardly recognize them, or they lose the ability to recognize themselves.
Given the devastating toll FTD takes on victims and their families, it should be much better known than it is. That’s why an Iowa County family in the middle of this painful fight is sharing their story.
Rita and Chuck Trevorrow will be married 29 years in August. They live in the Iowa County community of Livingston and have two grown children.
In 2010, when Chuck was 56 years old, Rita says her husband started losing interest in work and family activities and became easily agitated.
"Something’s not right," Chuck said to Rita.
"He couldn’t verbalize it," Rita said. "He just said something is not right, so we went to the family doctor."
Chuck was referred to a psychiatrist who diagnosed him with depression.
"After six months with the first doctor, she was sure this was the worst case she’d ever seen," Rita said. "She wanted to put Chuck in the hospital for electroshock treatments. We switched doctors at that point. The new doctor spent a couple of years adjusting medications and continued to add more and more meds. So, we’re about five years into it at this point, and I just kept thinking, 'Something in the brain just isn’t connecting, and I kept pushing to see what other testing we could do.'”
Eventually, Chuck and Rita were referred to a neuropsychologist. They had to wait 11 months for an appointment for cognitive testing.
“They did five hours of cognitive testing. We went back three weeks later, and that’s when they told us that Chuck has frontotemporal degeneration or frontotemporal dementia," Rita said. "It took us six years to get a diagnosis.”
Dr. Robert Przybelski, a geriatric physician at UW Health who works with FTD patients says, the Trevorrows' story is a common one.
“Usually, it’s not the patient saying something feels off. It’s the family saying that,” Przybelski said. “Unfortunately, the patients are the last, if ever, to have a sense there’s anything wrong.”
Przybelski said of the classic dementias, FTD is the first that would present in the 50s and early 60s and, because it presents in normal, healthy and active folks, it comes on insidiously.
Once considered a rare disease, FTD may account for 20% to 30% of dementia cases in people younger than age 65, according to the Alzheimer’s Association.
“We’re not doing as much research on frontotemporal disease as Alzheimer’s because there’s not as many people," Przybelski said. “We’re really in the Dark Ages of these neurodegenerative diseases. We’ve been studying Alzheimer’s disease for over 100 years, and we still don’t know what these proteins exactly do.”
The Trevorrow family is taking things one day at a time. Rita says despite the difficulties, getting Chuck’s diagnosis was actually a relief.
“At least now, we know what it is,” Rita said. “We know what we’re working with. There’s no cure and no treatment, but at least we know what it is and we know the behaviors are not something that he can control. It’s not his fault, and it’s not something he can change.”
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