Background Due to ageing populations, the WHO estimates that by 2050 the number of people living with dementia worldwide will more than triple to 152 million. For those working in geriatric medicine and memory services, we regularly interact with and advocate for patients coming to terms with memory impairments. One common theme often encountered during the patient dementia and cognitive impairment diagnosis journey is fear of loss of the sense of “self”, which can be informed by the negative and often inaccurate cultural narrative around dementia. Methods Recent promising breakthroughs in the development of disease modifying medications for Alzheimer’s disease, as well as greater emphasis on lifelong brain health and earlier diagnosis, represents a potential source of hope. This presentation will aim to explore the cultural narrative around the “lived experience” of dementia, which is often extremely negative and emphasises hopelessness. We look to some of the most commonly referenced narrative works, which can often form the foundation of many patient's prior knowledge of cognitive impairment and dementia before coming to the memory clinic. Results This presentation aims to examine the narrative works familiar to many patients (such as “The Father” and “Still Alice”) as well as some more recent efforts, including this year’s International Booker Prize-winning novel “Time Shelter” by Georgi Gospodinov. This darkly humorous book describes the arrival of a strange new ‘clinic for the past’ offering promising treatment for people with dementia. Conclusion Many works of narrative fiction explore dementia and memory impairment. While some are well-informed and researched, many lack empathy or even clinical accuracy. Narrative works can have an enormous impact on the widespread perception and understanding of diseases such as dementia. By exploring the potential for sensitive and accurate representation of dementia in popular culture, we aim to promote equity in this vulnerable and growing population.
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Roche et al. (2024) studied this question.
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