AFTD Ambassador Deb Scharper shared insights she gained as a former FTD care partner for her husband, Tommy during an interview on RAREcast, a podcast focusing on rare diseases.

Scharper highlighted the difficulty of getting an FTD diagnosis, noting that it took eight years for Tommy to be diagnosed. She underscored the common problem of misdiagnosis, as Tommy was repeatedly diagnosed with depression, even as his symptoms worsened.

For Scharper, getting care for Tommy was also difficult. “I tried to get home health to come in and help us,” she said. “I couldn’t get my insurance company to help us pay for these agencies to help him stay at home and to make sure he was safe; at this point now he was starting to get lost and I couldn’t trust him to stay home alone and not get in a car. It was a very emotional time and very strenuous time for our lives.”

FTD proved to be not only socially isolating for for the couple, but a finanicially difficult one as well. At one point, Scharper had three different jobs just to keep bills paid. A 2017 study funded and co-written by AFTD found that FTD is twice as costly as Alzheimer’s disease.

Scharper underscored the lack of resources available for people affected by FTD. After Tommy was diagnosed, Scharper had nobody to turn to. While she found a disease support group, the group, which was focused more on Alzheimer’s disease, wasn’t a good fit for her or her daughter.

“I started googling and trying to find an organization, and that’s when I found AFTD, the Association for Frontotemporal Degeneration,” Scharper said. “They were my lifeline and they’re the ones that got me through most of this.”

As a piece of advice to listeners, Scharper encouraged FTD care partners to reach out to AFTD, and to take advantage of the many resources available on its website.

“There’s a wealth of information on there,” Scharper said. “You can get in a support group; now we’re even doing Zoom support groups, which are awesome because you don’t have to leave your house. If you can’t leave home, you can at least dial in and get together with other caregivers.”

Deb Scharper previously shared her FTD journey in a story published by The Healthy.

AFTD Ambassadors like Scharper represent AFTD in communities across the United States, raising awareness of FTD through grassroots efforts and by connecting people with resources to help them on their journey. Click here to meet AFTD’s Ambassadors.