James Rowe, UK

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:

As Professor of Cognitive Neurology James studies the mechanisms and treatment of frontotemporal dementias, Progressive Supranuclear Palsy, corticobasal syndrome and related disorders. He trained in medical sciences and experimental psychology at Cambridge, before clinical training in Oxford and his PhD at UCL, London. After specialist training in London and Copenhagen, he returned to Cambridge where he now leads the Dementia theme of the NIHR Biomedical Research Centre, and directs the Cambridge Centre for Frontotemporal Dementia. He is Associate Director of Dementias Platform UK, and Chief Scientific Adviser to Alzheimer’s Research UK.  His work brings together deep-phenotyping, brain imaging, genetics, computational modelling, pharmacology and cognitive neuroscience to understand the mechanisms of disease and disease variance, as the pathway to new treatments. He is an active clinical neurologist, which underlies his determination that research focusses on the priorities for people affected by dementias. He loves the ISFTD meeting, a highlight of the academic year, with its integration of clinical- and discovery-science, and collaborative spirit.

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