Frontotemporal dementia – a combined national focus

Dementia Australia and the Australian Frontotemporal Dementia Association (AFTDA) have joined forces to increase access to support for people living with frontotemporal dementia, their families and carers.

Key to the agreement between the two organisations is the transfer of the operation of existing carer support groups to be managed and delivered by Dementia Australia.

Ian McRae AO, Chair Australian Frontotemporal Dementia Association said combining the expertise of the two organisations, this transition will ensure people living with frontotemporal dementia, their families and carers will become more aware of the services and support programs offered by Dementia Australia to people with the disease, their families and carers, all over Australia.

“Over the past year the discussions to achieve this transfer have been long and thorough to ensure that the members of these support groups have confidence that the existing programs will continue with the possibility of expanding nationally,” Mr McRae said.

Dementia Australia CEO, Maree McCabe said it is crucial that Australians living with frontotemporal dementia receive the support they require and Dementia Australia is well placed to ensure this continues into the future.

“Dementia Australia as the national peak body aims to ensure everyone living with any form of dementia knows that our organisation is here for them, their families and carers,” Ms McCabe said.

“Frontotemporal dementia impacts the frontal and/or temporal lobes of the brain that affects mood, social behaviour, attention, judgement, planning and self-control.

“This can lead to reduced intellectual abilities and changes in personality, emotion and behaviour.

“In contrast to Alzheimer’s disease, a person’s memory often remains unaffected, especially in the early stages.

“We know frontotemporal dementia is most common in those diagnosed under the age of 65 – but not exclusively – it can occur in older people too.”

“AFTDA was established in 2012 with the broad objectives to focus on setting up carer support groups for people impacted by frontotemporal dementia,” Mr McRae said.

“Following the Federation of Alzheimer’s Australia unifying and changing its name to Dementia Australia in October 2017, AFTDA viewed the change as a positive, inclusive step in broadening the public’s understanding of dementia, especially to increase awareness of the less-well-known younger onset dementias, such as frontotemporal dementia.”

There are around 100 different types of dementia and Dementia Australia’s mix of services already support tens of thousands of Australians of all ages impacted by all forms of dementia, including frontotemporal dementia, through our counselling and support programs, our National Dementia Helpline and our online resources.

Ms McCabe and Mr McRae presented about the transition of the program as part of the Carers Day Program on 13 November at the 11th International Conference on Frontotemporal Dementias which was held in Sydney, 11-14 November, 2018.