Upon learning of an FTD diagnosis, finding help and support from others who have faced the reality of the disease can be a challenge. One option that AFTD offers to facilitate these types of connections is our closed Facebook group, populated by thousands of care partners and persons diagnosed who want to learn and share their firsthand knowledge of FTD.

Every day, members post messages to the group asking for advice, telling their stories, or sharing helpful resources that they have recently found. For many members, participation in the closed group is a daily necessity, and a way to feel connected in the midst of a very isolating and confusing disease.

For care partners, the group is useful as a source of practical, experiential suggestions about managing their loved ones’ FTD symptoms – “real ‘been there done that’advice,” as Sharon Hall, a care partner for her husband and an active member of the closed Facebook group, puts it.

Persons diagnosed use the group as well. Cindy Odell, who was diagnosed with FTD in 2011, says that she is impressed by how friendly and welcoming people in the group are. She said she has belonged to similar closed Facebook groups in the past, but too often they contained “caregivers saying horrible things about their loved ones.” The closed AFTD Facebook group has been much more inclusive, she
said, calling it “one of my lifelines.”

Dr. Geri Hall, a highly regarded FTD expert and frequent contributor to the closed group, said that part of the group’s value is that it gives people a way to talk honestly, without judgment. “There is so much social stigma and shame regarding FTD behaviors,” she said. “Families need a safe place.”

The group bears the AFTD name, and a small number of AFTD staff members serve as administrators and moderators. But the group is very much a product of its members, who share experiences and information with each other in a place where those perspectives are deeply respected.

Sheryl Whitman, who lives with FTD, said that she uses the group “both to gain information shared by AFTD and others, and to extend help to other members. To me, it feels like I’ve had a productive day when I can help people by offering insight and helping them to understand the symptoms of FTD from the perspective of someone diagnosed.”

The closed group is accessible at www.facebook.com/groups/52543721114. You can also search for The Association for Frontotemporal Degeneration, and then be sure to select the Closed Group option, distinct from our public Facebook page. After requesting to join the group, you will be asked to answer a short question about how FTD has affected your life. An AFTD group admin will admit you to the group shortly after you submit your answer. The privacy of group members and their perspectives is of utmost importance to us, and is carefully maintained within this closed group.

“I refer people to the group all the time, and I’m always happy to see that it is growing,” Sheryl Whitman said. “And what I tell people is this – the support group will be a great benefit to you.”