What Is Frontotemporal Dementia?

Will Fuller

When most people hear the term “dementia”, they associate it with the elderly and aren’t quite sure how it differentiates from “Alzheimer’s disease”.  It makes sense, after all, Alzheimer’s is the most common cause of dementia in the senior population.   For clarity, dementia is the overall term for a wide range of tragic diseases, including Alzheimer’s, as well as others, like Frontotemporal Dementia (FTD).

In my opinion, FTD is the harshest of them all–it’s the most common form found in people under 60 years old, in fact, it almost always strikes the young–there have been cases in people as young as 20 years old.

It’s the cruelest for those reasons, but even more so because there is no known cure, no drugs to slow or stop the progression, and no good reason why it chose to strike my mom at 63 years old.

My mom, June, had just settled into retirement and planned to spend her golden years doting on her six grandchildren.  She was healthy and happy.  But then there was a strange shift–we noticed some changes, some behavior that wasn’t consistent with her normal self.  She seemed aloof and indifferent about things that had always been important to her.  She seemed less healthy somehow, less happy.

We took her to a slew of doctors and had all kinds of tests run.  When we got the diagnosis, we were stunned with the severity of it all and even more so with the neurologist’s very honest question and explanation:

“Does your mom have money? Because she is going to need it, all of it.”

We learned that FTD (also referred to as Pick’s disease) affects the brain’s frontal lobe, which is the part of the brain that helps make decisions and organize.  What begins with a slight, and then more severe, cognitive decline, quickly progresses across all functions of the body as the brain shrinks and degenerates.  It renders its victims unable to care for themselves, to require around-the-clock care, like that of an infant.

Most often, those with FTD eventually die from complications due to pneumonia. But, with an average life expectancy of 7-13 years, the disease takes its sweet time to not only rob families of their loved ones, but the immanent financial burden drains their bank accounts as well.

First, the personality disappears and then it’s a sad, slow and steady march to the end.

While my family was lucky that our mom’s financial situation made the process manageable, many others are not as it hits most at an age where they, and their families, have not prepared for the astronomical costs soon to be incurred.  While the statistics show that FTD affects just 60,000 people, it seems that everywhere we turn we find someone else who has lost (or is losing) a loved one to it.

For these reasons, my sister, Lauren, and I have made it our mission to use our platform, The Sister Project, to share our journey, spread awareness and help others who are dealing with this heartbreaking disease.

The Sister Project has aligned with the leading organization committed to making progress with research, awareness, support, education, and advocacy for FTD: the Association for Frontotemporal Degeneration (AFTD) to host Hallowpalooza: An Event to Benefit AFTD on Saturday, October 26th.