What is FTD?

Frontotemporal dementia (FTD) is a type of dementia characterized by the first symptoms usually appearing between the ages of 40 and 60 and sometimes earlier. The term frontotemporal is indicative of the lobes of the brain, the frontal and left and right temporal lobes, mostly affected by the disease.

FTD is not the same as Alzheimer's disease (AD). There are significant difference between the two diseases both in symptoms and the caregiving challenges that are associated with them. At this writing in November 2010, most people still have not heard about FTD and significantly fewer know anything about it.

As clinicians and medical researchers are slowly gaining greater understanding about FTD, the terminology used and the way different forms of FTD are grouped have continued to evolve. Consequently, in reading articles about FTD, you may come across variations in terms used or how some forms of FTD may be referred to, especially if the article was not written within in the past few years.

At present, cases of FTD are generally categorized into 3 main groups depending upon the first symptoms that are recognized: 1) Behavioral-variant frontotemporal dementia (bvFTD); 2) Semantic dementia (SD); and 3) Progressive non-fluent aphasia (PNFA). It is not known with certainly which form of FTD a person may have or even if the person has FTD until an autopsy is performed.

When my wife was finally given a diagnosis for her condition in 2003 after almost 4 years of seeing doctors for it, the team of neurologists told us she most likely had primary progressive aphasia, a term which seems to be seldom used anymore. Today, for at least some clinicians and researchers, it refers to the SD and PNFA forms of FTD together. In retrospect now, my wife’s symptoms seem to have been consistent with semantic dementia.

As any debate about FTD terminology and classification may continue, it is really not important from a caregiving perspective what form of FTD a person has. Regardless, there will be specific and unique caregiving challenges associated with it, and the effort needed to care for the person will be demanding both physically and emotionally.

You can find much more in depth information about the current thinking of what is FTD and the various forms of it on our Resources page.