Carer Support Groups

Because Fronto-Temporal Dementia (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.

Our organisation ran carer support groups for several years and in 2018 we passed the existing groups to Dementia Australia (DA). DA had previously been named Alzheimer’s Australia and in a small way discussions between our and their then Chairs resulted in an appropriate name change. Since then Dementia Australia has run our groups and has been expanding the reach. 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 stories/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.

Carers must be referred to the groups before attending, either by contacting the Dementia Australia helpline themselves or through an external referral agency.

To refer to these groups, please contact Dementia Australia’s National Dementia Helpline, on 1800 100 500, Monday-Friday 9-5, or email: [email protected]

Current Health Professional Facilitated FTD Specific Carer Support Groups (this may be out of date as our organisation is currently in a care taker advisory board mode having passed running the groups on to Dementia Australia).

Tasmania – Dementia Australia office Hobart
Every second Tuesday of the month, 11am – 1pm 

Victoria, Melbourne – Dementia Australia, Hawthorn
First Friday of each month, 10:30am – 12:30pm 

Victoria, Gippsland – Warragul
3rd Thursday of the month, every second month, 3 – 4.30pm

NSW, Sydney – Dementia Australia N. Ryde office
3rd Tuesday of the month, 10:30am – 12:30pm 

Victoria, Barwon – Dementia Australia, Geelong
1st Tuesdays of each month, 10:30am – 12pm

Victoria, Shepparton – Dementia Australia, Shepparton
1st Thursday of each month 

Victoria, Ballarat – Dementia Australia, Ballarat
Tuesdays once a month, 10:30am – 12:30pm

Victoria, Bendigo (Loddon Mallee) – Dementia Australia, Bendigo
Last Tuesday of each month, 10.30-12.30 

Current FTD Peer Support and Social Groups (this may be out of date as our organisation is currently in a care taker advisory board mode having passed running the groups on to Dementia Australia).

Victoria, Melbourne – Dementia Australia, Hawthorn
Last Monday of every second month, intervening month group meets socially

NSW, Sydney – Randwick and Central Sydney
Monthly. Contact Deb Law on [email protected] or ph: 0422688464 NB unlike other DA groups, this group is a social group convened by a community member, Deb Laws (not under DA umbrella)

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 Dementia Australia’s National FTD