Disease Overview

Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. FTD is also commonly referred to as frontotemporal dementia, fronto-temporal lobar degeneration (FTLD), or Picks disease.

Brain Image

Brain Image

FTD is distinct from other forms of dementia in two important ways:

• The hallmark of FTD is a gradual, progressive decline in behavior and/or language (with memory usually relatively preserved). As the disease progresses, it becomes increasingly difficult for people to plan or organize activities, behave appropriately in social or work settings, interact with others, and care for oneself, resulting in increasing dependency on caregivers.

• Onset of FTD often occurs in a person’s 50s and 60s, but has been seen as early as 21 and as late as 80 years. Roughly 60% of cases occur in people 45-64 years old (Knopman, 2011), thus FTD can affect work and family in a way dementia in older patients does not.

While there are currently no treatments to slow or stop the progression of the disease, FTD research is expanding, producing greater understanding of the disorders. We anticipate that this knowledge will result in a growing number of potential therapeutics entering clinical testing within the next few years.

It is important for caregivers and families to think about long-term management issues and identify a team of experts who can help with difficult medical, financial and emotional challenges. It is imperative to have a physician who is knowledgeable about FTD and approaches to treatment. Other medical specialists who may be helpful include: speech and language pathologists, occupational and physical therapists, neuropsychologists, nurses (especially home-care nursing), social workers and genetic counselors.

Although specific symptoms may vary from patient to patient, FTD is marked by an inevitable deterioration in functioning. The length of progression varies, from 2 to over 20 years with a mean course of 7-13 years from the onset of symptoms (Onyike and Diehl-Schmid, 2013). FTD itself is not life-threatening. It does, however, predispose patients to serious complications such as pneumonia, infection, or injury from a fall. The most common cause of death is pneumonia.

Useful Links:
Fast Facts About FTD
Newly Diagnosed
Healthcare Professionals