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A new article arising from our project in The Gerontologist

An earlier issue of The Gerontologist, the journal for the Gerontological Society of America.

Sometimers, Alzheimer’s? I love that! That’s definitely me

Carney, G., Lugea, J. Fernandez-Quintanilla, C. and Devine. P. (2023) ‘Sometimers, Alzheimer’s? I love that! That’s definitely me’: Readers’ responses to fictional dementia narratives. The Gerontologist.

Our research project has resulted in a new article published in a special issue of The Gerontologist, dedicated to investigating how arts and humanities can find new pathways to understanding ageing. In the article we share our main findings of interest to gerontologists – those who study ageing and older people. The project shared extracts from novels whose protagonists had dementia at reading groups of people with dementia, carers, the general public and student social workers. In this article, we concentrate on reporting the views of participants with most direct lived experience of ageing – people with dementia and carers. We refer to them as ‘readers’ throughout the article.

Readers with dementia spoke about the fictional characters with dementia as if they were old friends. They used self-deprecating humour to draw parallels between themselves and the fictional characters.

The most exciting finding for us was how open and articulate the people with dementia were in describing their internal lives after diagnosis. Readers with dementia spoke about the fictional characters with dementia as if they were old friends. They used self-deprecating humour to draw parallels between themselves and the fictional characters. The title of the paper itself is drawn from a moment in one of our reading group sessions when one reader with dementia, ‘Will’ (a pseudonym), cites Saul Reimer from An Absent Mind who described his Alzheimer’s as more of a case of ‘Sometimer’s Alzheimer’s?’ to which Will responded ‘I love that! That’s definitely me’.

[Carers] were perhaps more sceptical, but still found the stories to be an accurate depiction of living with (and caring for) dementia, at least from their perspective.

It turns out that perspective is everything when it comes to dementia.

We also compare the responses of readers (who are carers) to the same extracts featuring these fictitious characters with dementia. These readers were perhaps more sceptical, but still found the stories to be an accurate depiction of living with (and caring for) dementia, at least from their perspective. It turns out that perspective is everything when it comes to dementia. In our final conclusions we recommend that society and policy-makers should listen more carefully to what people with dementia have to say about their experience of living with dementia. Once you shift your focus from popular disaster metaphors of the disease and start to listen to people who live with dementia, they begin to resemble other disabled people and the case for their rights as individuals becomes clear.

We hope that this article shows how approaches from the humanities can aid gerontologists in their efforts to communicate to society that the complex needs of older people are about more than disease management and control.

Watch this space for future articles arising from our reading group research!

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Call for Submissions “In Our Own Words”

A team of academics, linguists and writers based at Queen’s University Belfast are currently working on an exciting AHRC-funded research project exploring how dementia is written about in the novels we read. As part of this project they’ll be publishing a short booklet of writing by people living with dementia. The “In Our Own Words” booklet will be distributed to doctors, healthcare professionals and other key workers in the hope that it might give them a small, first-hand experience of what it’s like to live with dementia. The team are looking for people living with dementia from across the UK and Ireland who’d like to contribute some writing to the booklet. This is a great way to share your stories, thoughts and experiences. The team are looking forward to hearing from you.

You can send a short piece of writing to Jan Carson via her email address jan.carson@qub.ac.uk Submissions can be up to 400 words long and should give the reader a little glimpse of your own experience. You might want to tell a story about something that’s happened to you since your diagnosis or talk about what it’s like to live with dementia. You might want to share somethings you wish other people knew about dementia or talk about the people who offer you support or even share some of the things you’ve recently learnt about yourself. Feel free to write in your own style. You can even write a poem if you like. 

The team can’t guarantee that they’ll be able to include all the pieces submitted. It will depend upon how many submissions they receive but they are very keen to read and consider your work. Please mark your stories “In Our Own Words” and don’t forget to include your name. The deadline for all submissions is April 30th 2021. The booklet will be published over the summer. All contributors will receive a copy and a chance to join in with a special online celebration event.