Tracey Wardill, Australia

Bio:

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

Presentation:

Frontotemporal dementia (FTD) encompasses a group of heterogenous syndromes that significantly diverge from the prototypical manifestation of dementing diseases. Diagnostic pathways within healthcare systems typically emphasize memory deficits and other cognitive symptoms associated with dementia, complicating recognition and management of FTD. Additionally, variable terminology, such as using the term “memory disorder” instead of “dementia” in some languages, generates further challenges in the understanding and handling of FTD.

Especially the neuropsychiatric and behavioural symptoms of FTD may be challenging to communicate with the patients, their families, and media. However, avoiding discussion on these symptoms may increase the stigma and stress in the families. Active communication of the broad spectrum of FTD symptoms and phenotypes is essential for ensuring equitable treatment and rights for the affected individuals. The lack of communication can also lead to serious legal challenges. For instance, some scientific articles have indicated that judges, making the decision of legal guardianship, do not always recognize major FTD-related symptoms as organic parts of dementia and may interpret that these symptoms are, in fact, signs of the free will of the individual.

Adopting a realistic and neutral communication approach with the public could increase awareness on FTD, accelerate its diagnosis, and diminish stigma surrounding FTD. Proactive engagement with various stakeholders, including families, healthcare professionals, and legal entities, is crucial for promoting equitable access to support services and legal protection. Sharing the best practices in communication and management strategies among stakeholders is imperative for optimizing the care and support for individuals with FTD and their families.

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.

  • Panel discussion

    Date: 20 Sep 2024Time: 16:00 - 16:00 CET
    Communication on FTD: how to deal with the stigma and how to generate awareness