Portrait of Prof Olivier Piguet

Carer Support Page


Websites for carers

This page lists relevant websites which give more information on FTD and carer services.

(Please be aware that some of the websites are overseas (US, UK) and therefore some of the services described might differ from Australia)
Frontotemporal Dementia:
The Australian Fronto-temporal Dementia Association (AFTDA)
Association for Frontotemporal Dementias (US) (click here for newsletters)
FTD Support Group (UK)
Frontotemporal Dementia by Alzheimer’s Society UK (UK)
Personal blog on living with bvFTD
Frontotemporal Dementia Caregiver Support (US)
Speakability – Aphasia Charity (UK)
Australian Aphasia Association
PCA (Posterior Cortical Atrophy) support network in Australia
Dementia Associations:
Younger Onset Dementia: Alzheimer’s Australia
Health Services – New South Wales Government

Websites by Carers:
FTD support forum (worldwide FTD carer forum)
International PPA (Primary Progessive Aphasia) Connection (IMPPACT)
Dementia Journeys (Forum, blog, daily compilation of internet and social media Dementia resources)
Constantly Trying (Personal blog by carer of person with FTD)
Carers’ Associations and Information:
Information for Caregivers – Alzheimer’s Australia
Caring for someone – Australian Government
Carers’ Allowance – Centrelink
Carers’ Australia
Carers’ New South Wales
Guardianship Tribunal – New South Wales

See what’s going on at NeuRA


'I've got the best job for you dad. Your shaky arm will be perfect for it!'

Children… honest and insightful. Their innocence warms the heart. But what words do you use to explain to a child that daddy has an incurable brain disease? What words tell them that in time he may not be able to play football in the park, let alone feed himself? What words help them understand that in the later stages, dementia may also strike? Aged just 36, this was the reality that faced Steve Hartley. Parkinson's disease didn't care he was a fit, healthy, a young dad and devoted husband. It also didn't seem to care his family had no history of it. The key to defeating Parkinson's disease is early intervention, and thanks to a global research team, led by NeuRA, we're pleased to announce that early intervention may be possible. Your support, alongside national and international foundations Shake it Up Australia and the Michael J Fox Foundation, researchers have discovered that a special protein, found in people with a family history of the disease increases prior to Parkinson’s symptoms developing. This is an incredible step forward, because it means that drug therapies, aimed at blocking the increase in the protein, can be administered much earlier – even before symptoms strike. The next step is to understand when to give the drug therapies and which people will most benefit from it. But we need your help. A gift today will support vital research and in time help medical professionals around the world treat Parkinson’s disease sooner, with much better health outcomes. Thank you, in advance, for your support.