What is Frontotemporal Degeneration (FTD)?
FTD is the most common form of dementia for people under age 60.
It represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. FTD is also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick’s disease.
How does FTD differ from Alzheimer’s disease?
FTD brings a gradual, progressive decline in behavior, language or movement, with memory usually relatively preserved.
It typically strikes younger.
Although age of onset ranges from 21 to 80, the majority of FTD cases occur between 45 and 64. Therefore, FTD has a substantially greater impact on work, family, and the economic burden faced by families than Alzheimer’s.
It is less common and still far less known.
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.
FTD also imposes a more severe economic burden on families: 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.
How does FTD progress?
The progression of symptoms – in behavior, language, and/or movement – varies by individual, but FTD brings an inevitable decline in functioning. The length of progression varies from 2 to over 20 years.
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.
Over time, FTD predisposes an individual to physical complications such as pneumonia, infection, or injury from a fall. Average life expectancy is 7 to 13 years after the start of symptoms (Onyike and Diehl-Schmid, 2013). The most common cause of death is pneumonia.
Are there options for treatment?
Today, there is no cure for FTD. Unfortunately, no current treatments slow or stop the progression of the disease. However, if you or a family member or loved one are affected, there are important steps that you can take to preserve and maximize quality of life. A growing number of interventions– not limited to medication – can help with managing FTD symptoms.
It is important for you and your care partner to identify a team of experts who can help with coordinating care and with the legal, financial and emotional challenges brought on by this disease.
AFTD is here to help
Don’t face an FTD journey alone. AFTD offers information, resources and ways to connect to others who understand.
If you have questions that it would be easier to discuss, please contact our HelpLine at 866-507-7222, or by email at [email protected]. Find out more by subscribing to email updates. Both in-person and online support groups for people with FTD and their care partners, and a variety of resources and publications can also offer crucial help for every stage of the FTD journey.