Tracey Wardill, Australia

Communication on FTD: how to deal with the stigma and how to generate awareness

Presentation:

The equation is disarmingly simple: raising awareness of FTD will reduce stigma. Reducing stigma will improve the road to diagnosis, promote the development of appropriate supports for families, and advance research which will ultimately see an end to FTD.

Drawing on the FTD World Awareness Week 2024 theme –  “We’re in this Together” – this session will look at how researchers, clinicians, and those caring for people living with the disease can work together to raise awareness  and understanding of FTD.

A vital component of awareness is  the language we use. FTD presents unique challenges in this regard.

How do we speak to the world about the behavioural and other symptoms of FTD in a way which  reduces shame and increases understanding? How do we explain to carers and families the behavioural and language symptoms that have so changed the person they once knew?

Can we reduce stigma and shame to promote access to services with neutral, active, and realistic communication?

How do we raise awareness across the global community? What do differences in language and culture mean for global awareness? Are there common things we can all do to effectively raise awareness?  What roles can different groups in our global community play in raising awareness?

This session will involve brief presentations by two speakers  –  Eino Solje from Finland and Tracey Wardill from Australia – who will address these questions, drawing on their experiences in FTD research, clinical work and raising awareness in the global community.

Aspects of awareness raising will then be discussed with a panel of experienced caregivers, researchers, and clinicians from around the globe.

We hope you will join us for this thought provoking session.

Bio:

Dr Tracey Wardill M.A. (Clinical Neuropsychology); PhD.

Tracey is a Clinical Neuropsychologist in Australia. She is Director of  Neuropsychology  Melbourne.

A Churchill Fellowship in 2008 enabled her to visit leading FTD centres around the world.  Tracey then established the first support group for carers of people with FTD in Australia. She is on the Board of the Australian Frontotemporal Dementia Association and works to raise awareness and increase supports for FTD carers in Australia.

Tracey is Chair of World FTD United, an international group which supports FTD organisations around the world. World FTD United conducted the first FTD Awareness Week in 2015 and since then have run powerful annual awareness campaigns.