Krista Payzant of Montana characterized FTD as a thief that “strips the person of who they are” in an interview published in November by the news station KRTV3. Sharing the experiences of her FTD journey with her husband, Justin, Payzant highlights the challenges of diagnosis and living with FTD, as well as the need for greater awareness.

Payzant shares that Justin was a loving father, husband, and adventurous soul who joined the U.S. Army right out of high school. Justin wanted to serve his country, but being a husband and father was important to him, Payzant added.

“He volunteered for deployment for a unit that was not his in Afghanistan for a year,” Payzant said. “He was gone from September 2011 to September 2012, and that kind of shows who he is. It was a newer unit, not where his home really was, but he wanted to go and be over there.”

In 2016, Payzant gave birth to the couple’s son. The following year, she noticed differences in Justin’s demeanor, most notably a growing apathy towards his interests and relationships. By spring 2018, Payzant and other family members also noticed changes in Justin’s speech.

“I think living with it every day, and how slowly everything progressed, I wasn’t seeing it right away; at one point, I didn’t know if I [knew the] man that I had married,” Payzant said. “But then I started seeing more neurological symptoms, like he would [whisper], or [not use] the right word in conversation. Sometimes, he would tell me that he didn’t understand what I was saying, and I had to use specific words with him.”

Justin was initially diagnosed with depression after visiting several doctors and psychiatrists. The medication prescribed to him only seemed to make him worse, which prompted a sequence of events involving a CT scan, an MRI, and several other tests and scans that would lead to Justin finally receiving a diagnosis of FTD. Justin was diagnosed the week of his 29^th birthday.

“Before I had met Justin, [when] I heard the term dementia, I thought of Alzheimer’s, forgetfulness, that sort of thing – it’s not,” Payzant said. “There are so many different forms of it, and frontotemporal dementia is actually the first most common in people under 60 years old.”

As the article notes, FTD’s presentation is unique to each person – there are several known FTD disorders with varying and, at times, overlapping symptoms. Primary progressive aphasia and its subtypes are characterized by speech and language difficulties, for example, while corticobasal syndrome is an FTD disorder that primarily affects movement. As the disease progressed, Payzant says that Justin experienced problems with movement in addition to his behavioral challenges, requiring a wheelchair at one point during his journey.

Helping Justin overcome these symptoms became a progressively harder challenge for Payzant and the couple’s family, who were also contending with the ambiguous grief of the FTD journey.

“We all lost pieces of him together, and I think it takes a piece of us too. FTD doesn’t just affect the person, but the whole family. Everybody that loves him and everybody that knew him feels it,” Payzant said. “It’s often called the longest goodbye, which is very true; every day, you lose them a little bit more. It’s painful.”

Justin passed away in March 2022 at the age of 33. Payzant has turned to raising awareness of FTD, hoping to educate others about the disease Justin faced and bring attention to research efforts. Raising awareness is personal to Payzant for reasons beyond Justin’s journey.

“I feel especially passionate about that because Justin’s form of [FTD] does carry a genetic component to it, which means that our son has a 50/50 chance of developing it as he gets older,” Payzant said. “That’s scary to think about, so it’s really important that people know that it exists.”

Payzant also told KRTV that she hoped that bringing attention to other types of dementia would make the journey easier for persons diagnosed.

“[Justin] didn’t always look sick; he just looked a little odd sometimes, he behaved a little odd, and you never really know what is going on in someone’s life,” Payzant said. “We have a large group of dementia people who still deserve kindness, respect, and dignity.”

Did you know U.S. veterans with an FTD diagnosis qualify for benefits through the Department of Veterans Affairs? For guidance from the AFTD HelpLine about ways veterans can seek support through the VA, read the article Dear HelpLine – Support for Veterans.

Justin’s misdiagnosis is common in FTD because the disease is still too little known. AFTD’s diagnostic checklists can help families and their medical providers navigate uncertainty surrounding symptoms and whether or not they might be FTD.