We aren’t talking about FTD enough

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Samuel walked into the room and started immediately yelling about his boss. “I can’t believe this mother [explicative deleted]! He laid me off!” 

It was particularly sad because we all knew why Sam had been laid off: his FTD was nearing the unbearable. He was often very kind and funny, but when he got hooked on a topic, he was explosive. 

“You know what! [Explicative] this guy! You know what I mean!” he yelled to no one in particular. Sam slapped his forehead hard, three times in a row. “Ugh!”

Most people don’t even know what Frontotemporal Lobar Dementia is until someone they love gets the diagnosis. 

FTD is a rare form of dementia, although it’s still one of the “top four” that I discuss in workshops on dementia care (Alzheimers, Vascular Dementia, and Dementia with Lewy Bodies are the other 3 “big” dementias.)

FTD affects the frontal and temporal lobes of the brain, which control a lot of person’s ability to make decisions and control their “filter.” People with FTD often have trouble with one of three (or a mix) of the following: behavioral inhibitions, movement, and speech. 

It also tends to affect people before the age of 65, which makes it extra challenging. People with FTD often don’t fit in well at senior care communities because they are often 20+ years younger than everyone else and have a completely different type of impairment. 

They’re often very behavioral disinhibited, and will say whatever comes to their mind at any given moment. Your frontal lobe is the part of your brain that helps you “filter” your speech and actions. People with FTD have an impaired frontal lobe, so their filter is almost nonexistent. 

Poor Sam was a younger man, much younger than a lot of his peers with dementia. He also alarmed them, at times. His mouth was alarming to the older adults with Alzheimer’s disease and vascular dementia. They didn’t talk like that, and couldn’t believe that someone would.

FTD is a particularly challenging form of dementia. I think that we need to spend more time talking about it. People who have loved ones with FTD need to know that others are struggling with this diagnosis in their families, as well.

For more on this topic, check out my review of Fractured Memories.

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Rachael Wonderlin has a Master’s in Gerontology and is the author of two published books with Johns Hopkins University Press. She owns Dementia By Day, a dementia care consulting company.

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