FTD can be a very lonely disease. Finding others who understand what it is like to be diagnosed can offer emotional support and practical tips for coping in daily life. More support for people with FTD is becoming available. Some options to consider are:

Face to Face Support

  • PPA support groups. Several academic medical centers and aphasia treatment centers are developing support groups for people with primary progressive aphasia. For more information contact the or 866-507-7222
  • Younger onset or Early stage dementia support groups. These can help you to accept the diagnosis, adapt and keep living. Check with the local Alzheimer’s Association or memory care center for groups in your area.
  • Informal get-togethers. Increasingly, FTD caregiver groups, service providers and affected families have created ways for people diagnosed with FTD to meet informally with each other for support. Contact the or 866-507-7222 for groups or events in your area.

On-Line Support

  • FTD Patient Support Group on Facebook. A closed, private group that is facilitated and moderated by people diagnosed with FTD. For information, contact Sheryl Whitman at
  • Primary Progressive Aphasia Group on Facebook. A closed, private group facilitated by Natasha Young.
  • The FTD Support Forum offers on-line support for caregivers and patients.
  • Dementia Alliance International. Support and advocacy of, by and for people with dementia.

Zoom support group

  • AFTD Support Group for People with FTD. A mutual support group that is facilitated by AFTD staff and meets monthly via Zoom, an easy to use computer web-camera platform. Contact or 866-507-7222 for more information.

AFTD’s website and HelpLine for information and questions

Helpline – 866-507-7222 or
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