This disease is also known as frontotemporal degeneration (FTD). Strange behaviors usually arrive before the forgetfulness. See this post for more explanation. FTD tends to show up in people in their late 40s to early 60s, a time when most of us are still working. The biological culprit is the tau (pronounced like “towel” but without the “l” on the end) protein. Tau is a needed building block for nerve cells, but for some reason, too much tau gets produced and the brain cells start to die off. The brain cell death is mostly in the frontal lobe (the part of your brain that sits behind your forehead) and the temporal lobes (the two sides of your brain that sit behind your ears). These two places are your “adult” brain, the responsible pieces that force you to bite your tongue before making some smart-a$$ response or giving you the motivation to delay gratification, or vacuum the floors instead of watching Netflix. These two places also house the “brakes.” The “brakes” keep you from eating an entire 5-pound bag of Halloween candy in one sitting or drinking an entire case of beer in one evening.

FTD has several different “faces.” Here are 3. For more, go to the Association for Frontotemporal Degeneration website.

• Behavioral variant FTD.  This is like losing the brakes a little at a time. The recall ability of the brain, the part that can tell you the date or repeat and recall 3 words during a memory test, behaves normally at first. The personality starts to change, and not in a good way.  A loving and responsible spouse/partner engages in affairs, neglects the bills, or both. A fitness fanatic stops going to the gym and begins to pig out on sweets. The behaviors often start in small, sneaky ways and finally become too bizarre to ignore. It is not unusual for persons affected by FTD to come to the neurology clinic by way of law enforcement.
• Primary progressive aphasia. This “face” also has several subtypes as well. The person loses the ability to speak in a way that makes sense. Sometimes, the person loses the ability to retrieve categories of word like nouns. So the sentence, “The cat ran under the table when the dogs came into the room” may sound like “The…you know, the thing, it has whiskers, it ran under the…um…the thing, you put things on it…” Other people can speak without difficulty but their words make little sense to the listener, “The catch loped over the trauma when elephants sat down.” Some individuals are so badly affected that they become unable to speak at all.
• Cortical-basal syndrome. The person has problems moving one side of the body and ultimately forgets how to do things with the limbs on that side. The affected side is often rigid and may have tremors.

FTD does not usually respond to the medications commonly used with Alzheimer’s Dementia. In fact, such medications can make the behaviors much worse.  These individuals usually respond better to rewards than negative consequences. Some of the behavioral techniques on this site can be used to deal with refusals.

Caregivers of persons with FTD may feel frustrated in support groups where the majority of caregivers are dealing with Alzheimer’s disease. Also, the cost of caregiving for a person with FTD is much greater than the financial cost of caring for someone with AD. This is why caregivers dealing with FTD would benefit from their own support groups and FB pages. It IS different.

Categories: FTD

Dr. Rita Jablonski

Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.