“No one knows why these diseases start in specific regions of the brain but we think it is influenced by the normal organization of brain networks,” said Bradford Dickerson, a behavioral neurologist at Massachusetts General Hospital and co-principal investigator in the LEADS trial. “These circuits talk to one another. There is a shared vulnerability to these disease pathologies. These early-onset dementias may be rare and are very frequently misdiagnosed or unrecognized.”
His FTD clinic started 12 years ago with just a trickle of patients and now sees about 400 patients a year. He believes the increased numbers are due to increasing awareness, and not likely to increasing rates of the diseases.
No matter what the presentation, virtually everyone in midlife with visual or spatial problems, language or behavioral symptoms has been through the wringer in trying to get the right diagnosis. It took Ted Prewitt, for instance, two years to get the right diagnosis…
Image: Ted Prewitt and his wife, Laura Prewitt, were married for decades when he was diagnosed with an atypical form of dementia. “He’s just not the same guy,” Laura says. “I want him back.” (Abby Laub/J.A. Laub Photography)