Why AFTDA is focused primarily on carer support
The decision by the Australian FTD Association (AFTDA) to strategically focus first on carer support rather than the support of people with FTD, was influenced by the following factors:
AFTDA was established by family carers of people with FTD an this is the lived experience that AFTDA’s Carer Board members have to offer others. Not surprisingly then, AFTDA’s primary goal was to establish more FTD carer support groups to help share the expertise and experience they have gained in their caregiving journey with newer FTD family carers.
AFTDA does not propose to replace or replicate clinical advice, education or research. Instead, AFTDA collaborates with and lobbies existing dementia organisations and clinical services 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 already funded and run by Alzheimer’s Australia. These programs already invite participation by both the person with dementia and/or their family or support person. Some people in early stages of FTD, particularly those with retained insight in to their disabilities or those who first present with motor or language problems, may well benefit from these services.
AFTDA advocates and encourages people with these particular FTD disabilities to seek out all existing opportunities for education, support and participation in their advanced care planning.
There is also evidence supporting participation in individual and group language therapy with Speech Pathology specialists for people with language variant FTD. (This includes people with a diagnosis of Primary Progressive Aphasia/Progressive Non Fluent Aphasia or Semantic Dementia.) AFTDA is currently working with the Australian Aphasia Association and Speech Pathology Association of Australia to establish more of these groups.
There have been limited attempts internationally to establish and evaluate group support services for people with behavioural variant FTD (bvFTD) as the most common form of FTD. This is because people with bvFTD commonly present with significant disruption to communication, comprehension, insight, judgement, organisation and behaviour. Another hallmark point of difference between FTD and other dementias is the common loss of emotional/social cognition.
The consensus view of FTD clinical experts is that there would be limited perceivable benefits from participation in education for someone who has lost insight and capacity to understand and plan for the consequences of their disease. In these circumstances, it will be the family or support persons that must assume responsibility for understanding and learning to live with FTD and planning for appropriate support services.
Furthermore, there could be risks by placing people with bvFTD who have poor impulse control in group social settings. This may only confound their frustration and set them up for failure by highlighting their loss of social cognitive skills. It is believed that people with these FTD related symptoms, generally do much better with more one on one carer supervision, support and engagement than dementia support and activity groups can currently offer.
AFTDA has not established support groups for people with FTD, but does play an active role in education and advocacy with dementia service providers to help them understand how they need to adjust their systems to better meet the needs of individuals and families affected by FTD. In this way, AFTDAs advisory and advocacy services aim to benefit both people with FTD and their family carers in the medium to long term.
AFTDA is a not for profit and primarily self-supporting organisation. Hence it is critical that AFTDA allocate its limited resources to areas where it has the most expertise to offer and maximum benefits can be achieved. As AFTDA expands its caregiver support and funding base, it is hoped that AFTDA lobbying power and direct service provision can also grow.