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What is Frontotemporal Degeneration?

Written by Corey Esannason, Ambassador, The Association for Frontotemporal Degeneration

FTD stands for Frontotemporal Degeneration which is the most common form of dementia for people under age 60. FTD represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. The degeneration produces progressive changes and decline in behavior, language and/or movement.  To most of the public it is widely unknown. As CBS’s 60 Minutes says it is “the cruelest disease you have never heard of.”

The faces and stories of FTD are many and varied but they all tend to have three commonalities.

First, since rare and less common, the road to a diagnosis can be long. FTD’s estimated U.S. prevalence is around 60,000 cases (Knopman 2011, CurePSP), and many in the medical community remain unfamiliar with it. FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.

Second, the disease strikes young. The majority of FTD cases have an onset of 45 – 64 years old, although some are as early as 21 and as old as 80. Therefore, FTD has a substantially greater impact on work, family, and finances than Alzheimer’s. (The economic burden of FTD is approximately $120,000 per year, nearly double the amount associated with Alzheimer’s, according to a 2017 study funded and co-written by AFTD and published in Neurology.)

Third, the progression of symptoms brings an inevitable decline in functioning. Symptoms vary from case to case but all cases denote a change and decline in behavior, language and /or motor skills.  As the disease progresses, the person affected may experience increasing difficulty in planning or organizing activities. They may behave inappropriately in social or work settings, and have trouble communicating with others, or relating to loved ones.  The average life expectancy is 7 to 13 years after the start of symptoms.

No matter the face or story, the lives of those affected by FTD (and their families) are completely altered by this voracious terminal disease.

While there is currently no cure for FTD, there is hope. And there are important steps that you can take to preserve and maximize quality of life for persons affected by FTD and their care partners and families.  Most importantly you do not have to do it alone.   The Association for Frontotemporal Degeneration (AFTD) offers information, resources and ways to connect to others who understand. For questions, please contact the FTD HelpLine at 866-507-7222, or by email at info@theaftd.org.

AFTD offers both in-person and online support groups for people with FTD and their care partners, and a variety of resources and publications providing crucial help for every stage of the FTD journey.  Please click here for more information on the Association for Frontotemporal Degeneration and how they can assist you on your FTD journey.

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