AFTD Ambassador Dan Moser was interviewed last month about his work supporting FTD caregiving on the radio program Gulf Coast Life, which airs on the Fort Myers, Fla.–based NPR station WGCU.

Following a long search for a diagnosis, and then after ten years living with FTD, Moser’s wife Maria passed away about two years ago. Moser’s own journey as her caregiver, and his background as a social worker, prompted a pivot away from a career as a bike and pedestrian safety advocate toward supporting dementia caregivers.

Today Moser is a certified dementia care specialist, an AFTD support group facilitator, and an AFTD Ambassador.

In the interview he spoke about how he came to center his life around those who care for persons with FTD and other dementias.

“Once we got the diagnosis of FTD in 2015, I said we need a support group specific to that because it’s much younger people than most dementias, and I just figured as a social worker, I might as well do it myself,” he said. “I hooked up with AFTD, got trained, and started doing support for them.”

Moser observed that “the age issue” sets FTD apart from other dementias. “It’s very complicated. There’s no Medicare, you have to fight for all that. [Diagnosed] people are still working age a lot of times. They may have young children in school, so that becomes a big issue.”

Asked what he learned about himself over the years of caring for Maria, Moser highlighted that patience is paramount.

“My wife having been a speech therapist—that’s the definition of being patient. I was not quite that patient,” he said. “As things were coming out of my mouth…‘Why am I saying this?’ I already know why she’s doing this and that she has no control over it.”

He also emphasized that caregivers should lower their expectations, including about who might come to help. “You just have to be grateful for those that do, and not hold it against anybody that doesn’t,” he said.

He recommends that caregivers dive into the available resources, and seek help if they need it, as soon as possible: “I got a lot of help right from the get-go. Some caregivers miss the boat on that.” He said that once they fall behind, they put their own physical and mental health at risk.

The AFTD maintains an extensive repository of caregiving resources. The AFTD HelpLine is also available for questions large and small, or just for reassurance that you’re not alone.