Diagnosing & Caring for FTLD: The Leading Cause of Dementia in People Under 60

Rob Memmolo, CDAL, Executive Director, Benchmark at Rye

Frontotemporal dementia or Frontotemporal Lobar Degeneration (FTLD) disease, as it is now known, has been making news recently due in large part to actor Bruce Willis’ diagnosis.

At Benchmark at Rye, our collective team has provided care and specialized programs for thousands of people with FTLD over many decades.

Most people associate the word dementia with advanced age and think it’s not something they have to be worried about until they are in their 80s or 90s. What’s different about FTLD – compared to the over 100 types of dementia – is that it most commonly affects people in their 40s to early 60s. In fact, “dementia” was recently dropped from the name in favor of FTLD to help overcome confusion.

It’s not uncommon for patients experiencing FTLD-like symptoms to go to many doctors and undergo many different tests before they are diagnosed. This was the case for Mary of Hampton whose son, Bob, was finally diagnosed at the age of 55 after struggling with symptoms for several years.

“It’s very hard to get a correct diagnosis,” said Mary. “Bob saw seven different neurologists, several psychologists and underwent many tests before he was finally diagnosed.”

The most common initial signs and symptoms include problems with behavior and language. People with FTLD may often suddenly behave in a way that’s out of character. For example, those who are generally social may begin to withdraw from social situations. They may also develop compulsive behaviors like constant humming or pacing.

In Bob’s case, the married father of two teenagers had always been very social, happy and loved talking to people.

“He started to withdraw from everyone socially and emotionally,” said Mary. “For example, we had wanted to do something for his birthday, and he didn’t want anything to do with it. He didn’t want to see me either, which was upsetting, as we had always been very close and could talk about anything. He would get real upset and say I don’t want you here.”

One day, to the family’s shock, without warning Bob suddenly decided to close his business. “He had a schedule and clients and the next day he said he closed it. He never explained why, we never knew,” said Mary.

Loss of speech or language is also often among the first symptoms. Difficulties making sense when they are speaking or understanding the speech or writing of others is common.

Even though Bob had a Master’s in business and had excelled at language, singing and playing the guitar since he was a child, he began to experience difficulty speaking. Known as aphasia, something that Willis has also been reported to be experiencing, Bob’s language problems got more and more difficult as the disease progressed.

In the early stages, people with FTLD may have just one symptom and develop more as time goes on.

As it gets more advanced, memory loss and physical symptoms are often seen. Challenges with movement, including unsteadiness on one’s feet, rigid or weak muscles, twitching, general slowness and problems swallowing are common.

Although Bob never completely lost his memory and had been the physical picture of health up until that point, a week before his passing he suddenly lost his ability to stand up. “He went from taking long walks with us to falling. It’s almost like his brain was giving out,” said Mary.

For situations where full-time caregiving may pose a challenge and a specialized environment can be more beneficial, assisted living communities can provide not only help with daily living activities but also programming that’s tailored to each individual’s needs.

Look for communities with high staffing ratios who are informed on the ever-changing science and research surrounding FTLD. In addition, seek those with resident programming that’s especially suited for those with FTLD.

At Benchmark, our resident care and programming associates setup individualized resident programs, giving prompts and cues along the way to help ensure successful completion. We also offer small and large group programs throughout each day that are based on each residents’ interests. Residents with FTLD can have one-on-one time to listen to their favorite music, do physical activities and participate in other programs that those with greater cognitive decline may have difficulty with.

Communities like ours can also help with things like sundowning or agitation and confusion that worsens each day as daylight begins to fade, which Bob and many other people with FTLD experience. Specialized lighting helps reduce the effects of sundowning while aromatherapy helps calm.

It’s important that people who are experiencing any of these symptoms consult their physician. As with any condition, early diagnosis is key to help ensure the best quality of life.

“It’s the long goodbye,” said Mary. “The entire three-year journey was an emotional roller coaster. Although there is no cure or medication to treat FTLD, it’s important that people get an early diagnosis so they can plan with their family. Also, it’s important for families to get support.”

There are many resources available locally for Seacoast families impacted by FTLD. Specifically at Benchmark at Rye, two support groups are offered the 2^nd Thursday of each month from 2-3PM and the 4^th Thursday from 5-6PM for people with or caring for those with all types of dementia. Easter Seals out of Manchester also offers a monthly virtual FTLD support group the 2^nd Wednesday 9:30-11AM. For more information, visit BenchmarkAtRye.com or EasterSeals.com/NH.

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Five Tips for Caring for Someone with FTLD

1. With the loss of some functions and ability to plan, for those with FTLD, initiating activities or tasks is not always possible. To help them on their way, sit with them for a few minutes to get them started.
2. As is common with many different types of dementia, people often find themselves struggling with not having a purpose to their day, especially those who had worked or generally kept busy. Find an easy, repetitive job for them that they are physically able to do, such as folding laundry, dusting or sweeping. It will provide them with purpose and caregivers with relief from a task.
3. Another way to engage is to create an easy game for two or a small group. For example, checkers rather than chess may be a good option. Also, word games like finish the phrase or finish the lyrics are good for working on language skills. A person with FTLD may no longer understand rules, so loosely define them and be flexible.
4. Some people with FTLD do better with simple individual activities. For instance, range of motion exercises, walking, reminiscing and trivia centered around favorite subjects are a great way to engage.
5. If one finds themselves managing compulsive behaviors like wandering, channel that energy into an activity. Sorting and organizing things like a deck of cards or dominos may hold their attention for a long period of time.

Symptoms and abilities change regularly, so look creatively at how to adapt and build upon what works. For example, if they used to enjoy word searches that are no longer a breeze, change the rules to searching for parts of words or just two letters together rather than entire words.