There are support groups around the world for people and families affected by FTD. We are part of an international consortium bringing those groups together called World FTD United.
In the UK, we help to run support groups for people and families affected by FTD through Rare Dementia Support:
- FTD Support Group: focused on carers of people with any form of FTD.
- PPA Support Group: focused on people with PPA and their carers and family members.
- Familial FTD Support Group: focused on at-risk family members from genetic FTD families. For more information on genetic FTD and living at-risk of familial FTD click here.
Other groups within the UK who have useful information about FTD or provide support are:
- Alzheimer’s Research UK: www.alzheimersresearchuk.org
- Alzheimer’s Society: www.alzheimers.org.uk
- Young Dementia UK: www.youngdementiauk.org
- Dementia UK: www.dementiauk.org
For information about the allied disorders the following sites are helpful:
- MND Association: www.mndassociation.org
- PSP Association: www.pspassociation.org
Many countries around the world have support groups specifically focused on FTD:
- France: France DFT
- Spain: Asociación de Demencia Frontotemporal
- Netherlands: FTD Lotgenoten
- USA: The Association for Frontotemporal Degeneration
- Australia: The Australian FTD Association
One of the most difficult topics that we encounter is discussing a diagnosis of FTD with children. The AFTD in the US have developed a series of resources including a specific website for children.