(ABC 6 News) – Frontotemporal dementia (FTD) is a brain condition resulting in changes to a person’s very being.

The condition can result in devastating behavioral changes to those who suffer including inappropriate actions and poor judgement.

Those diagnosed with FTD could also develop language difficulties, body tremors, loss of coordination, or even difficulty swallowing. Ultimately, a diagnosis means a shortened life expectancy.

While dementia may have once been thought of as a condition for the elderly, some recent high-profile diagnoses have shined a new light on the disease and how it can impact anyone at any age.

“He could’ve had such a better life. We could’ve done some pre-planning. Gotten some more help in the home and maybe make his life not so stressful,” said Deborah Scharpner as she shared of her family member Tommy’s journey.

Tommy Nash of Osage, Iowa began showing symptoms of FTD around 2011. A PET scan ended an almost five-year-long journey of questions. Doctors diagnosed him with FTD at 44 years old.

“I would say it was more of a devastation of saying ‘Oh my gosh, what’s going to happen?’ Back then, that was 2015, things have come so far. What we were told in 2015 is to go home and get your affairs in order,” said Deborah when asked if she remembers the moment doctors diagnosed Tommy.

He now lives two-and-a-half hours from home in Newtown, Iowa, at a care facility. Doctors say awareness of FTD isn’t the only thing lacking.

As Dr. Heike Schmolck, a neurologist at MercyOne puts it, “I would definitely say there’s a lack of training in our facilities on this particular disease. I wouldn’t say there are any specialized facilities for FTD so they can be the odd ones out.”

Those facilities are often the ones with FTD will call home.

“While some individuals are able to live with assistance within the home, with their family members. Unfortunately for many of them, it just becomes too difficult,” said Dr. Bradley Boeve who is a Neurologist at Mayo Clinic.

At home or a facility, everyone’s journey is different.

“There are various approaches,” explained Boeve. “Some are non-medicated approaches. There are some mediciation approaches that can help to some extent.”

— Related: Wendy Williams has frontotemporal dementia. What is FTD? —

With celebrities like Wendy Williams and Bruce Willis coming forward and maybe more public figures in the future, no one has to be alone.

— Related: Wendy Williams diagnosed with same form of dementia as Bruce Willis —

“People often haven’t heard about it when they’re diagnosed with it. So I think that’s the main thing, the public awareness that there’s other diseases that are not Alzheimer’s disease and that can impact younger people.”

Deborah wants to remind people that they can hear the right answer as to what’s going on and that their loved ones can help.

“When they start getting dementia – they think that they’re fine and normal. You have to know in your gut that you’re doing the right thing and you need to go and get the right answers and don’t quit until you get them.”

The Scharper and Nash families are using their experience to help others by taking part in the Association for Frontotemporal Degeneration.

On Saturday, March 23, there will be a meet and greet at Four Daughters in Spring Valley for families to meet others who may be going through the same thing. The event starts at 1 p.m.