Jun 13, 2016 6 min read

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Dr. Carol Schramke

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Charlotte Panton is pictured in the early 1990s. She was always very active and happy and loved time with family before being disagnosed with frontotemporal dementia in 2010.

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Charlotte Panton and her daughter, Lauren Panton Fleury, in April 2008. 

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Charlotte Panton and her husband, Roger, are seen in the early 1990s.

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Charlotte Panton loved the outdoors and was very active before being diagnosed with a form of dementia.

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Charlotte Panton and her daughter, Lauren Panton Fluery, are shown during their last Christmas together just a month before Panton died. Panton suffered from frontotemporal dementia.

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Randi Poirier knew something was wrong, but doctors told her that her mother’s inability to understand certain words was part of normal aging.

The Greensburg woman trusted her gut, and after three more referrals and false diagnoses, she received word from doctors at Allegheny General Hospital that her 63-year-old mom, Joey, had frontotemporal dementia, or FTD. The “semantic-based” version of the disease meant Joey’s loss of brain cells in her frontal lobes was contributing to her inability to understand basic concepts.

“One time I told her, ‘There’s a delay in the flight,’ and she asked, ‘What delay?’ and she wasn’t asking for a clarification on time – she didn’t know what a delay was,” Poirier said. The 29-year-old cares for her mom, and had practice as a caretaker as her father ultimately died of Alzheimer’s disease in 2014.

Yet lessons learned through those experiences have Poirier and others cautioning patients’ caretakers that Alzheimer’s can be confused for several types of dementia if proper follow-up isn’t taken and that some doctors’ pushback on families’ observations can deteriorate a patient’s relationship with their physician, along with their mental state.

Poirier’s dad was a true, clinical definition of Alzheimer’s. He wouldn’t know where he was; he couldn’t fill out a restaurant bill – executive functions many take for granted. But her mom has had her road memory intact. She can give directions and balance a checkbook, but doesn’t know what the word chicken means.

With Alzheimer’s, you can carry on a conversation. But with FTD, you lose basic communication. “It’s heartbreaking,” Poirier said.

The shift in personality can sometimes be slow, but it’s almost always dramatic, according to Dr. Carol Schramke, Allegheny General Hospital director of behavioral neurology.

For Poirier, her mom became an entirely different person. She cooked for 15 years and hated chain restaurants. But now her family takes her to Denny’s and she’s thrilled. For leisure, her mom’s childlike disposition requires visual stimulation because she basically can’t read. She likes watching music videos, Poirier said, because they are short and random. But dramatic changes in behavior can also be perceived by family to be short-lived and random, to the detriment of the patient.

Progressive language problems can be subtle initially, but can worsen very quickly, according to Schramke. She cautioned that sometimes family members or doctors write it off as stress or depression. But overall, the changes are more behavioral than cognitive.

The first patient Schramke had diagnosed with FTD was a responsible businessman who lost his job and could have been prosecuted over mismanagement and even lost his retirement benefits. His family was angry, and he made excuses. They didn’t notice the changes until it was too late.

Unlike Alzheimer’s, memory issues are usually not a problem with FTD. Schramke said memory in this specific sense is learning new information, not recollection of past events. With FTD, patients and their families could misinterpret the underlying issue of not being able to learn information as a problem associated with Alzheimer’s, but the cause is much different – it’s a matter of attention. The inability to hold onto information is the hallmark.

A patient with FTD often won’t learn because he or she can’t pay attention. And it’s up to family to put together the puzzle pieces because the patient likely won’t know there is a difference. FTD affects the frontal lobes, which is where your insight and ability to integrate information occurs.

“So you could be changing and you don’t notice it yourself because those incremental changes you just acknowledge as part of you as if they were there the whole time,” Schramke said.

The inability of a patient to report these changes, Schramke said, is why it’s imperative for family to be diligent about referrals and second opinions in the face of skepticism or suspected false diagnoses. But sometimes that’s not so easy, as personalities can clash in the doctor’s office, like it did for Lauren Panton Fleury, of Dormont, whose mom, Charlotte Panton, had suffered with FTD since 2010 before dying of its complications in early 2016. Fleury said a paternalistic neurologist doubted her claims about her mom’s behavior.

“He was being threatened over his authority since Lauren had such specific questions,” said Lauren’s husband, Anthony. Fleury had researched and talked with others experiencing FTD and when the questions kept coming, the doctor’s doubt turned to apparent insults.

Despite frustrations experienced by Fleury and others in her situation, Schramke said it’s important to keep up conversations with a primary care physician in addition to all referred specialists.

One of the biggest misnomers Schramke dispels is that FTD is a progressive degenerative disease that affects only older adults. FTD patients tend to be younger, developing symptoms as early as 35 years old. Alzheimer’s symptoms typically show around age 55 or older. Regardless of age, Schramke said, family should treat the patient as normally as possible to help everyone involved cope with new personality traits.

For Fleury, there were few moments when she could truly “see” her mom. As one of Charlotte’s primary caretakers, bathing was part of her responsibilities. It was in those moments that she could see flashes of her mom’s true personality shine through.

“She would be sitting in the washing chair and I would wipe away the soap from her hair and eyes and say, ‘I can see your eyes!’ And she kind of just lit up and looked me straight in the eyes. We all did routine things with her, but that’s the one thing where she actually seemed engaged and acknowledged me as her daughter,” Fleury said.

Family members fall into routine, which also helps the person with FTD. But developing that routine – and watching a family member slide into bouts of confusion – can be the most difficult part of caring for an FTD patient.

“It’s really hard when you see that person who’s in between the disease and hasn’t fully succumbed to it and they know they’re not who they used to be,” Poirier said, “because they know something’s wrong. But when they do slip and succumb to its grip, they’re happy; then you’re in pain. Just do everything you can to help prepare yourself and everyone around them for it. It’s a seismic life shift.”