Frontotemporal dementia is an umbrella term used to describe a group of younger onset neurodegenerative conditions with a typical onset between the ages of 45 and 65 years. A small proportion of people with FTD, experience symptom onset at 70 years of age or older, whilst another minority may experience very early symptom onset, with the youngest documented onset occurring at 21 years of age.

Frontotemporal dementia is estimated to be the second most common cause of dementia in younger people after Young Onset Alzheimer’s disease.

The estimated prevalence rates in westernised countries vary due to differences in the samples and populations used in different studies, with estimates of the incidence per 100,000 people ranging from 15-50. Based on these incidence estimates, between 3,500 and 11,500 Australians are currently estimated to be affected by Frontotemporal dementia. However many, if not most, people with FTD are misdiagnosed and are often treated for psychiatric disorders, depression, or Alzheimer’s itself.

To date there have been no formal prevalence studies of FTD in Australia, no registers and limited research in to the condition or how it affects Australians with FTD and their Carers. There are limited specialists, FTD clinics and services in Australia compared with the US and Europe adding to the burden of Australians with FTD and their Carers.

For more information about FTD go to the FTD Toolkit: or