Support

Led by trained and dedicated AFTD volunteers, support groups – offered in person and virtually – are a vital resource for care partners and caregivers, family members, and persons diagnosed. At the local, regional, and national levels, they provide a safe environment to share stories, learn ways to advocate, and gain much-needed coping skills and strategies to navigate a diagnosis.

Last year, we launched several new options. Living Well with PPA, a six-week online group, gives people newly diagnosed with primary progressive aphasia a space to cope with their diagnosis together. Each weekly discussion, guided by a clinical psychology PhD student and a support group volunteer, provides an outlet to learn about PPA while finding support from others living with this FTD disorder.

Approximately 40 percent of FTD cases are familial, a subset of which is known to be genetic. In early 2024, we established a group for People at Confirmed Genetic Risk, for those who are asymptomatic but have positive predictive genetic results with a known risk of developing FTD. A second option – the Familial FTD Peer Support Group – was launched for people with a family history of FTD who have not completed predictive testing or who choose not to learn their status.