Frontotemporal dementia (FTD) or Pick’s disease, is the most common form of dementia diagnosed in people under age 60. A 2019 segment on 60 Minutes dubbed it “the cruelest disease you never heard of.” FTD gradually erodes an individual’s personality, their ability to speak, make sound decisions, move and/or behave within social norms, according to the Association for Frontotemporal Dementia.
Deeper dive
FTD is actually a group of progressive diseases affecting the same brain regions. They include behavioral variant FTD, primary progressive aphasia (PPA), corticobasal degeneration, progressive supranuclear palsy, and FTD/ALS.
The disease affects the parts of the brain regulating “speech, behavior, problem-solving, planning and control of emotions,” as well as “recognizing faces and the meaning of words, as well as the ability to name familiar objects,” according to U.S. News. It’s absolutely devastating for both the person who develops it and their caregivers, say experts.
An accurate diagnosis is challenging, since there are no biomarkers and at least half of those with FTD don’t inherit it. Diagnosis is often reached through a process of elimination of other conditions; FTD is often misdiagnosed as depression, other psychiatric disorders, Alzheimer’s disease, vascular dementia, or Parkinson’s disease.
MRI and PET scans can help neurologists pinpoint areas of the brain which are affected, after more common cognitive diseases like Alzheimer’s are ruled out. One physician whose wife suffers from FTD, said it took four years, numerous experts and several medical centers to pinpoint the cause of his wife’s condition. She has Behavioral variant FTD (BvFTD), which is responsible for about half of all cases of the disease.
Personality changes, apathy, and a progressive decline in socially appropriate behavior, judgment, self-control, and empathy are hallmarks of BvFTD. People with this variant typically do not recognize the changes in their own behavior, or exhibit awareness or concern for the effect their behavior has on the people around them, according to the AFTD.
There are currently no treatments and no cure. While FTD is not in itself fatal, functional decline and other effects can lead to a shorter life span.