AFTD Advocacy Manager Matt Sharp and AFTD Ambassador Deb Scharper participated in a panel discussion on person-centered care for persons with FTD, hosted by biopharmaceutical company Alector.

The discussion, which took place during World FTD Awareness Week 2021, informed viewers on the personal experiences of FTD care partners, the role of genetic testing in FTD care, and how AFTD is working to support persons diagnosed and their families. Sharp and Scharper were joined by genetic counselor Jamie Fong, MS, LCGC, and Nadine Tatton, PhD, Director of Medical Affairs at Alector, who previously served as AFTD’s Scientific Director.

Sharp spoke to the resources AFTD provides, such as the HelpLine, for individuals in search of FTD information and support. Additionally, he discussed the increasing number of persons diagnosed with FTD who are advocating for themselves regarding their care.

“Over the past four to six years, [we’ve had] an increasing number of contacts from people who are diagnosed. I think it does reflect the fact that there’s a growing movement of people with dementia of all sorts who are really advocating for themselves,” said Sharp. “Too often we think a diagnosis of dementia is a ticket out of life when people have years of life left often with many capabilities and competencies left.”

Scharper shared her personal experience of caring for and advocating on behalf of her former husband, Tommy, who was diagnosed with FTD in 2015. She discussed her family’s difficulty in finding a permanent living facility for that could adequately accommodate Tommy.

“We have to find nursing homes and memory care units that will accept young patients. In my [home] state of Iowa, many nursing homes do not accept anyone under the age of 65 due to regulations and different activities they must furnish for the resident,” Scharper said.

Fong spoke to the significance of genetic testing for those impacted by FTD, saying that “for the one in five families facing the genetic form of FTD, genetic testing could identify the cause and could open up therapeutic trial opportunities for the person with the diagnosis.”

Fong continued: “The landscape of FTD genetic testing is changing — and changing rapidly. It is no longer only readily available in the research domain. In the clinical setting, Medicare may still not guarantee of coverage in the cost of dementia testing. There are more and more opportunities for people with FTD to obtain testing without having to rely on Medicare or commercial insurance.”

The new “FTD Genetics” section of the AFTD website provides more information on genetic counseling and testing, as well as additional information on no-cost testing options.

Watch the full panel discussion here.