Because FTD is a rare condition which is not widely understood, family caregivers often report feeling significant isolation. Support groups can provide FTD family caregivers with a chance to meet and share their experiences with other family caregivers who are also supporting someone with FTD.
These groups can take two forms;
(1) Facilitated groups which are run by health professionals with FTD specific knowledge/experience to provide ongoing support, practical advice and mentorship
(2) Peer/social support groups which are run by experienced family caregivers and offer an opportunity to share stores/experiences as well as social outings
Caregivers who have attended these groups reported a significant reduction in the sense of isolation as well as improved knowledge and confidence in responding to the symptoms and disabilities associated with FTD.
There are several different forms of FTD. If you are caring for someone with any of these diagnoses, we encourage you to try one of our support groups:
- Frontotemporal dementia (FTD)
- Behavioural or frontal variant FTD/PICKs disease
- Primary Progressive Aphasia including Progressive Non-Fluent Aphasia (PNFA) and Semantic Dementia
- FTD overlap with Motor Neurone disease (FTD/MND)
- FTD overlap with Progressive Supranuclear Palsy (FTD/PSP)
- FTD overlap with Corticobasal Syndrome (FTD/CBS)
Note: These group meetings are for caregivers only, not for persons with FTD.
At present, there are only a few FTD-specific support groups in operation, but AFTDA is seeking funding and partnerships to replicate their successfully evaluated Victorian based FTD carer support group model nationwide.
Enquiries about the support groups can be made here – please include your location information so we can provide information about local support groups
North Ryde (NSW)
The first support group meeting for this region is scheduled for Friday 18th November and is anticipated to continue on the 3rd Friday morning of each month thereafter.
1st Friday morning of each month
(FTD Family Carers from anywhere in Victoria are welcome to attend)
3rd Thursday of every second month
2nd Tuesday morning of each month. Further enquiries for this group can be made here
Alternating between Randwick and Brighton Le Sands – NSW
This social dinner and carer discussion group runs on the 1st Wednesday evening of each month
Further enquiries can be made here
If you would like to donate towards the National roll out of FTD support groups, please go to our donations page.
If you are interested in helping us establish an FTD support group in your state/territory, please contact our National Coordinator here.