The Association for Frontotemporal Degeneration (theAFTD.org) · Film: It Is What It Is · New Jersey FTD Specialists · Donate
Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the temporal and/or frontal lobes of the brain. FTD is also referred to as frontotemporal dementia, fronto-temporal lobar degeneration (FTLD), or Picks disease.
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, thus FTD can affect work and family in a way dementia in older patients does not.
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. 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.
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.