Strategic Focus

Why AFTDA is focused primarily on carer support

The Australian FTD Association (AFTDA) was established in 2012 by family and carers of people living with FTD.  They bought to the organisation the lived experience of caring for someone with this disease. We are a not for profit and primarily self-supporting organisation.  We are staffed by carers and health professionals with experience in FTD, all who volunteer their time.

At the time the organisation was established the decision was made to focus our efforts, and limited resources, on providing support for those who care for people living with the various forms of FTD.

AFTDA’s primary goal was to establish a network of FTD carer support groups throughout the country.  Our network began in Victoria.  In 2018 we transferred the running of the support groups to Dementia Australia.  The network has gradually expanded to include all states and territories.

AFTDA does not propose to replace or replicate clinical advice.  We do not currently provide formal education or conduct research. AFTDA does, however, work with clinical services, and lobby and collaborate with existing dementia organisations such as Dementia Australia, to improve and expand access to FTD specific education and support programs.

AFTDA does not seek to duplicate dementia education, counselling and consumer advocacy forums run by Dementia Australia.  These programs often invite participation by both the person with dementia and/or their family or support person. Some people in the early stages of FTD, particularly those with retained insight into their disabilities, or those who first present with motor or language problems, may  benefit from these services.

Based on our experience over more than 10 years we continue to believe that the best use of our resources is to advocate for regular support groups for those who are caring for people with the various forms of FTD.  The AFTDA remains committed to increasing the number of carer support groups around the country and improving access to this vital resource.