Dementia – Dementia Fiction

Reflections on our dementia-inspired anthology of fiction:

A Little Unsteadily into Light… and out into the world, one year on.

Just over a year ago, we published an anthology of new writing about dementia, commissioned and edited by Jan Carson and Jane Lugea (New Island press, 2022). To mark the anniversary of its publication, this blog post reflects on its origins, compilation and afterlife.

Origins:

As part of the research project described on this website, ‘Dementia in the minds of characters and readers’, we explored existing representations of dementia in fiction, finding that it was generally portrayed in white, middle-class ladies. Our project also explored the ways language is used to simulate the symptoms, inviting readers to better understand and empathise with the lived experience. Based on these findings we set out to produce an anthology of new writing about dementia, as socially and culturally diverse as those affected by it.

Jan hit upon the title for our collection, A Little Unsteadily into Light, inspired by a stage direction in Samuel Beckett’s Krapp’s Last Tape; although his play is not purportedly about dementia, it explores relevant themes of memory, ageing and identity.

Compilation:

Jan set to work on bringing together an impressive range of diverse contributors. Keen to support emerging writers, Jan and Jane hosted Creative Writing workshops with an assemblage of new talent, Jan imparting her professional craft and Jane her linguistic research.

“The workshop […] made me realise how much I didn’t know. Since then I’ve immersed myself in material, both factual and fictional, about the different forms and experiences of dementia. I’ve come away more convinced than ever of the importance of your project! I’ve also become a dementia friend which is great. It’s been an eye-opening experience for me and one that will definitely shape and inform my writing from now on.”
Participant in the Creative Writing workshop, November 2021.

Participants were invited to submit work arising from the workshop, and two were selected to be mentored by Jan in developing a contribution to the anthology. These emerging writers were in good company: the anthology also includes contributions from eminent authors, such as Sinéad Gleeson, Caleb Klaces and Nuala O’Connor. Many of the contributors were motivated to write about dementia based on their own experience of loved ones with the condition. The short stories are bookended with a Foreword from Jan on how to write about dementia ethically, and an Afterword by Jane on how literary language gives a window the condition (free download of Jane’s ‘Afterword’ below and on her QUB webpage).

Lugea-2022_Afterword Download

“There is great variety in these nine fictions, not only in the character and degree of agency of the dementia sufferer [sic.], but in the degree to which the reader is challenged by the form.“
David Butler, Books Ireland Magazine.

Afterlife:

An anthology on dementia fiction might be a hard sell – but as one reviewer put it “although the theme is around suffering these stories have their lighter moments” and “every story here is worthy of its place” (Anne Cunningham, The Meath Chronicle). We were all delighted when Nuala O’Connor’s contribution “This Small Giddy Life” went on to win Irish Short Story of the Year Award. Perhaps better than any critical or industry acclaim is knowing the impact that the opportunity had on our emerging writers. Anna Jean Hughes’s contribution to the anthology is a real reflection of the language tricks that Jane’s research identified and imparted. Anna Jean credits the opportunity with kickstarting her career as an author, contributing to the development of her first novel, and being signed with a literary agent.

“I have learned the value of clarity in the language I choose to tell stories as well as the importance of the choices I make as a writer. I have also learned the responsibility on all writers to write honestly and respectfully when tackling sensitive subjects such as dementia. I am braver now in my choice of subject for a piece, as I feel I have a wider set of tools that I can employ to tackle more difficult subjects with the kind of language that reflects sensitivity, honesty and respect.”
Chris Wright, workshop participant, writing mentee and contributor to the anthology

As A Little Unsteadily into Light continues to share its truths about dementia with our readers, royalties from every copy purchased go to the charity we’ve worked with throughout, Dementia NI.

Co-editors Jan Carson and Jane Lugea at the Belfast launch of 'A Little Unsteadily into Light' — Co-editors Jan Carson and Jane Lugea at the Belfast launch of ‘A Little Unsteadily into Light’

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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