Speaking with Care: Rethinking Narratives of Neurodegenerative Conditions

Speaking with Care: Rethinking Narratives around Neurodegenerative Conditions aims to foster more respectful and thoughtful discussions around neurodegenerative conditions, recognising communication as a vital form of care and social support. The event brings together researchers, charities and care professionals. We are particularly interested in exploring how academic research can be shared in ways that are more relevant, accessible and useful to those working outside of academic settings to support positive, practical applications.

The event is hybrid to ensure more accessibility, but in-person participation is encouraged. Catering (tea/coffee and lunch) will be provided on the day. Please mention when registering if you have any dietary requirements.

Participation is free of charge. We can offer a small travel bursary available to participants whose organisations may be struggling to fund their attendance. If you would like to apply for the bursary, please state when registering how much you need to cover your transport costs for the event. The travel bursary is limited and will be assigned on a first come, first served basis.

PROGRAMME

Flash talks by IASH Fellows and Affiliates:

• Dr Malgorzata Bugaj looks at popular film and film criticism as a practice of care, highlighting problematic and exemplary strategies for creating socially useful discussions around representations of dementia. She will share her findings from the upcoming edited volume Dementia in Film, Media and Culture: Towards Ethically Responsible Discourse (EUP, planned for 2026).
• Dr Benedetta Catanzariti investigates conceptualisations of health and illness in the development of digital health. In this short talk, she will share findings from a collaborative project looking at representations of dementia and Alzheimer’s Disease in the development of diagnostic Artificial Intelligence (AI) systems.
• Dr Georgi Gill researches the potential of poetry written by people with multiple sclerosis as a tool for exploring their experiences of illness and communicating these to others. She will share her experiences of the Poems on my Mind project in which she has been sharing the research findings with charities and the wider public.

Reflective creativity workshop:

In this workshop facilitated by the researchers, participants will have creative opportunities to use found poetry and collage to develop ideas about which aspects of neurodegenerative experience they would like to see better represented and disseminated to the wider community.

Closing discussion and reflections on further steps

“Speaking with Care: Rethinking Narratives around Neurodegenerative Conditions” is supported by the Susan Manning Workshop Fund from the Institute for Advanced Studies in the Humanities at the University of Edinburgh.

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Host or Publisher Institute for Advanced Studies in the Humanities