Author: Jan Carson

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Events

Online Creative Writing Workshop

Autumn 2022 will see the publication of an exciting new anthology of short stories which explore the theme of dementia in a variety of different ways. Edited by Belfast based novelist, Jan Carson and Dr Jane Lugea (Senior Lecturer in English Language at QUB), the anthology will feature new work by 12 of the most exciting prose fiction writers in the UK and Ireland alongside newly commissioned work from two emerging writers. The anthology will be published by New Island and is a creative response to an ongoing AHRC-funded research project based at QUB, (Dementia in the Minds of Characters and Readers), which explores how dementia is represented in the minds of fictional characters, and how readers respond to those characters.  

On Monday 1st November Jan Carson and Jane Lugea will be hosting a free interactive online creative writing workshop open to fiction writers based in the UK or Ireland. The workshop will explore how to write well and ethically about dementia and will be open to 12 students who’d like to be considered for inclusion in the forthcoming anthology. Following on from this workshop participants will have until the end of November 2021 to submit an idea for a short story of 4-6000 words. A single student will be selected from this process. They will receive mentorship and advice from Jan Carson over the next few months with a view to submitting a final story to the anthology by the end of February 2022. This is an absolutely invaluable opportunity to see your work included in a print anthology alongside established writers. The anthology is likely to garner significant media attention, including event and interview opportunities. You will also receive a payment of €250 for your story and attentive advice and mentorship from EU Prize-winning novelist Jan Carson. 

If you’d like to be considered for one of the twelve places on the workshop and a chance to have your story included in the New Island anthology please submit 500 words of prose fiction (any subject) to jan.carson@qub.ac.uk no later than 5pm on Friday 15th October 2021.

More information about the dementia fiction research project can be found on this blog. You can also watch all the panels, readings and discussions about dementia and fiction from our recent festival at the Dementia Fiction Festival channel on YouTube.

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Events

Dementia Fiction Festival – Programme

The festival takes place from 15th -16th September 2021. All events are free and accessible online. Book your place by clicking here.

Dementia Fiction Festival 2021

Dementia is one of the most significant illnesses of our time, with 50 million people living with the condition and many more whose lives are affected. In the absence of a cure, the onus is on us as a society to better understand and respond to the challenge. Writers are playing their part by creating characters who have dementia, giving readers insight into the condition. 

The Dementia Fiction Festival celebrates the wealth of new fiction depicting dementia, exploring the issues raised around ethics, diversity, empathy and care. As well as performances of new writing, the festival features a series of workshops, panel discussions and keynote talks from researchers, creative writers, and people living and working with dementia. 

The Dementia Fiction Festival is the culmination of an AHRC-funded research project being carried out by a team of researchers at Queen’s University Belfast, who are investigating the potential for fiction to promote awareness and understanding around the lived experience of dementia.

All are welcome.

Programme:

DAY ONE: Wednesday 15th September 2021

9:45 – Online welcome and orientation with Jan Carson

10:00-11:00 – Keynote 1 – Dementia in the minds of characters and readers

Dr Jane Lugea (QUB)

This talk reports on the research behind the festival, a project carried out by a team of researchers at Queen’s University Belfast and led by Dr Jane Lugea. Inspired by the recent boom in fiction depicting characters with dementia, Dr Lugea explores how these texts represent their subjective experience and the tricks of language that enable readers to simulate that experience. Through a series of reading groups using extracts from the fiction, the team are investigating the possibility for fiction to facilitate awareness of and empathy towards those living with the condition. The talk will share preliminary findings of the reading group research and explore the power of fiction to contribute to our understanding of dementia.

11:30 – 12:30 – Panel One – Research findings

Dr Jane Lugea (QUB) will lead this interactive conversation as writers and academics discuss and respond to the findings of the ‘dementia in the minds of characters and readers’ research project as outlined in the previous keynote. The session will feature contributions from Prof Tess Maginess (QUB), Dr Chloe Harrison(Aston) and Dr Naomi Krüger (Universiyt of Central Lancashire) who will read from her recent novel May(2018, Seren Books). 

1:30- 2:30 – Panel Two – The ethics of writing dementia.

Dr Gemma Carney (QUB) will moderate this interactive discussion on the ethics of how we write about dementia. Exploring issues such as dignity, research and appropriation the panel will ask some important questions in regards to how writers can ethically write and record another’s experience. The panel will feature a presentation from Dr Sarah Falcus (Huddersfield), alongside input from writer and academic Caleb Klaces(St John York University), Peter Middleton who is living with Alzheimer’s and Dublin-based novelist Henrietta McKervey who will read from her 2016 novel The Heart of Everything (Hachette, 2016). 

3:00- 4:00 – Panel Three – Diversity in dementia narratives.

Writer, Jan Carson will chair this lively panel on issues around diversity in dementia narratives. Raising important questions around a seeming lack of diverse representations in the portrayal of dementia, this conversation will also explores ways in which we can foster more diversity in writing and thinking about dementia. The panel will begin with a short talk from Dr Bas Groes (University of Wolverhampton), on diversity within literary and on screen representation of dementia, a reading from Irish poet Rachael Hegartywhose most recent work explores her mother’s experience of dementia and contributions from Bindi Dhesi(Alzheimer’s Society). 

4:15- 5:15 – Cocktail Hour- A series of facilitated conversations.

Grab a drink and join the members of the dementia fiction research team for a series of online chats about various topics related to the project and festival. Pick which break out room best suits your area of interest and get to know other people in the same field. Feel free to ask questions, swap information and make new contacts. You don’t have to be an expert to join the conversation. Everyone is very welcome. We can’t invite you to an in-person drink at the bar, but we hope this will be the next best thing.

7:00- 8:30 – Performance and discussion – Dementia and theatre.

Over the last number of years Northern Irish theatre company, Prime Cut have consistently delivered cutting edge, high quality plays and theatre projects which explore some of the most pressing societal issues of our time. In this performance and discussion, Vittoria Caffola (Paradosso Theatre), will introduce and chat to executive producer Una NicEoin and playwright Caoileann Curry-Thompson about Prime Cut’s history of engaging with dementia. The panel will include recordings of previous productions and an excerpt from Curry-Thompson’s new play which explores her father’s dementia experience. The panel will conclude with an opportunity for the audience to ask questions and contribute to the discussion.

DAY TWO: Thursday 16th September 2021

9:45 – Online welcome and orientation with Jan Carson

10:00-11:00 – Keynote 2 – From taboo to topical: the power of portrayals of dementia.

Prof Jan Oyebode (University of Bradford)

Dementia has emerged from being taboo to being topical. The way it is portrayed has real-life implications for how people with dementia feel about being diagnosed and living with the condition; it influences the attitudes and actions of those of us without dementia towards people with dementia; it impacts on the value society places on the lives of those with a diagnosis. In this talk, I will highlight some common portrayals of people with dementia, drawing on fictional as well as personal accounts. I shall try to show how different perspectives produce different ripples, that can undermine or support, educate or misinform, and connect or divide us.

11:30-12:30 – Panel Four – Writing non-fiction, memoir and biography.

Anna Wharton, novelist and recent ghostwriter of Wendy Mitchell’s bestselling memoir, Somebody I Used to Know, chairs this fantastic conversation about writing non-fiction accounts of dementia. The panel will also feature a short presentation by Dr Lucy Burke (Manchester Metropolitan University), Irish writer, Ian Maleneywhose essay collection Minor Monuments (Tramp Press, 2019), explored how his grandfather’s Alzheimer’s diagnosis impacted his extended family and Sue Leonard who has recently co-written If Memory Serves Me Well (New Island, 2021) with former actor and Riverdance manager, Ronan Smyth. Ronan hopes to contribute a pre-recorded message to this discussion. 

1:15 -2:15 – Panel Five – Dementia narratives in children’s and YA literature.

We’re delighted to include a conversation about how dementia can and should be explored in books aimed at children and young adults. Elaina Ryan of Children’s Books Ireland will chair this important and engaging conversation with celebrated Irish novelist, Sarah Moore Fitzgerald, who will read from her debut novel Back to Blackbrick (Simon and Schuster, 2013). Non Pratt, YA novelist and member of the team at Walker Books will represent the publishing world, while Dr Amanda Piesse will also bring years of experience as a former academic specialising in the representation of aging in children’s literature, alongside personal experience working in the voluntary and community arts sector. 

2:30 – 3:30 – Panel Six – Reading and writing in the community.

Our final panel, chaired by English poet and community arts facilitator Dr Sarah Hesketh, will take a brief look at some of the best and most innovative arts projects which engage people living with dementia, their friends, family and carers in reading, writing and theatre. Prof Kate de Medeiros (Miami University) will begin this session with a short talk on the opportunities and benefits afforded by community arts projects. Susanna Howard of Living Words and Sinead Devine of DEEDS will share from their own extensive experience in this area. Exploring both the importance of arts engagement and practical ways to get involved in such projects, this panel promises to be a really inspiring one. 

4:00- 4:30 – One to One Chat.

Grab a cuppa and join writer, Jan Carson and Dementia NI member, Davie McElhinney for an informal and engaging conversation about what it’s like to live with dementia. Davie will give us an insight into his diagnosis, his everyday life and the community he’s found at Dementia NI. Jan will raise some important questions about how writers should approach writing about dementia. This chat will be honest, useful and an absolutely essential watch for any writer thinking about exploring dementia in their work.

7:00 – 8:30 – Gala reading and discussion.

Writers have been at the heart of our research project and we want to conclude our dementia fiction festival with a celebration of some of the best dementia narratives we’ve come across in the last few years. Marjorie Lotfi (Open Book), will be our host for the evening as she introduces two poets, Sarah Hesketh and Lynda Tavakoli, and two prose writers, Anna Wharton and Niamh Mac Cabe whose writing approaches the subject of dementia in innovative, imaginative and informative ways. The session will include both a reading by the four writers and a brief chat about their process, the development of their work and their ongoing interest in dementia. 

You can follow updates on Twitter @fictiondementia and Tweet along with the festival using #DementiaFictionFest21

Most sessions will be available to view afterwards on our YouTube site Dementia Fiction

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Events

Dementia Fiction Festival -Registration Now Open

Please join us for two days of incredible performances, insightful presentations and important conversations as we explore questions raised by a recent research project at Queen’s University Belfast. Funded by the Arts and Humanities Research Council, the project investigates how the language of contemporary fiction represents the minds of characters with dementia. This festival/conference hybrid will bring together a unique mix of academics, writers, organisations, carers and people living with dementia to discuss how we write about dementia with honesty, imagination and integrity. All sessions will be available online, with plenty of opportunity for everyone to get involved with the conversation.

A full list of speakers, panels and readings will be available very soon. The event is free and open to everyone.

Festival Info

Online Only

Link & password will be sent closer to event date. Please check junk/spam folders.

Date(s): Wednesday 15th & Thursday 16th September 2021

Starts: 9:45am to 8:30pm each day

Run Time: Two Days

Booking Info

Reserve your free place at the festival here

Once you book a ticket you will get a standard confirmation email for your booking, plus an additional email with further introductory details for the festival.

The main session & attendance details will be sent out the week of the Festival in September.

Categories
Book Reviews

“Back to Blackbrick” by Sarah Moore Fitzgerald

Cosmo’s grandad is beginning to exhibit the early signs of Alzheimer’s. A team of social workers appear at the house he shares with his grandparents, hoping to test Grandad Kevin’s memory. If he doesn’t pass this memory test, Grandad will be dispatched to a nursing home. Cosmo is particularly close to his grandparents after his brother’s death and his mother’s subsequent move to Australia, leaves him living in their house. Desperate to help, he follows his grandad’s garbled instructions and uses an ancient key to let himself into Blackbrick Abbey. As soon as he steps through the gates, Cosmo is transported back in time. He meets his grandad as a young boy and gets caught up in a 70-year-old adventure, meeting the people who shaped his grandad’s life. As he plunges deeper and deeper into the strange world of Blackbrick, Cosmo continues to take extensive notes on the past, intending to use these notes to help Grandad Kevin pass his memory test. At the risk of giving away too many spoilers, I’ll leave my synopsis there.

Irish writer Sarah Moore Fitzgerald drew from her own experiences of her father’s dementia when crafting this beautiful snapshot of the relationship between a young man and his beloved grandad. The depiction of dementia is both accurate and shot through with moments of genuine humour and humanity. There are some genuine laugh out loud moments here and also a few scenes which moved me to tears. Grandad Kevin is far from being the stereotype often encountered in dementia narratives. And whilst the magical elements in the book bring a touch of whimsy and other worldliness to the story, at no point does Moore Fitzgerald shy away from confronting the harsher realities of watching a loved one journey with dementia. This, at heart, is a realist novel with a subtle element of the fantastical. 

Back to Blackbrick is full of wonderful, well-crafted and memorable characters and the plot kept me gripped from start to finish. I’d thoroughly recommend it for late primary and early high school readers who enjoy funny, adventure-filled novels. It also offers a great opportunity to introduce themes around dementia and begin important conversations on this subject with younger kids.

Back to Blackbrick was published by Orion Children’s Books in 2013 

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Book Reviews

“Aliceheimer’s; Alzheimer’s Through the Looking Glass” by Dana Walrath

Anthropologist, artist and writer Dana Walrath became a live-in carer for her mother Alice after her Alzheimer’s diagnosis became too much for her to manage alone. Moving her mother from her apartment in New York to the family home in rural Vermont, Walrath used the months they spent together to both record her mother’s dementia journey and forge connections which weren’t previously there. From the start, Walrath is honest about the fact that she is not particularly close to her mother and sees this period of dependency as an opportunity to bond before it is too late. I appreciated the honesty Walrath brought to the stories she tells about her mother and particularly their interactions and conversations. I also loved the humour in this book. It’s quite a gentle, upbeat account of dementia. Alice is placid and compliant throughout her illness. Walrath goes to great pains to show how her mother retained her humanity throughout her journey with dementia. I also really appreciated the way snippets of Alice’s history and the Armenian cultural tradition she belonged to is deftly woven into the narrative.

Aliceheimer’s is an unusual format. Each page contains both a small piece of observational writing and a beautiful artwork which illustrates the sentiment. The art is a mixture of collage and pencil drawing. Each scene depicting Alice is fashioned out of the cut-up pages of a copy of Lewis Carroll’s Alice’s Adventures in Wonderland. Thematically the Carroll text works marvellously as it allows Walrath to explore both the confusing and disorientating elements of her mother’s illness and the fantastical, imaginative scenarios which her dementia frequently pitches her into. I loved the use of collaged texts. It seemed the perfect medium for depicting Alice who, as a lifelong reader, was still enjoying the physical pleasure of holding a book and the comfort of being read to, long after her dementia had significantly impacted her ability to function normally in other areas of her life.

Aliceheimer’s is part of a fascinating series of publications which explore various medical issues through a combination of illustration and writing. The series is called Graphic Medicine and if the other publications are anywhere near as powerful as Aliceheimer’s I’d thoroughly recommend checking them out.

Aliceheimer’s was published by Penn State Press in 2016 

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Book Reviews

Scar Tissue by Michael Ignatieff

First published in the early 90s and concerned with late 80s America, Michael Ignatieff’s novel Scar Tissueexplores the dementia narrative at a point when much less was known about the illness. In fact the narrator, a 45 year old philosophy professor, does not use the term dementia when describing his mother’s condition. Her official prognosis is early onset senility, though the fact that he is able to describe previous generations of close relatives with similar symptoms would suggest some kind of dementia with a degree of genetic heredity. The specific diagnosis and terminology seems less important than the precise and insightful way Ignatieff goes about describing the unbreakable, and at times seemingly unhealthy bond, between a woman living with, then dying of, complications associated with dementia, and her devoted middle-aged son. Ignatieff’s fiction is so well-crafted and believable I continually had to remind myself that I was reading a work of fiction rather than a memoir.

The plot of Scar Tissue is a familiar one. A woman in her sixties begins to forget, then slowly loses her ability to look after herself. After her husband, and primary carer’s, sudden and unexpected death her sons make the difficult decision to sell the family farm and move her into residential care. It’s well-written but somewhat obvious terrain. However, there were two aspects of Scar Tissue which I found incredibly powerful and unique. Firstly, I appreciated reading an honest and powerfully written exploration of the relationship between a son and mother living with dementia. Whilst still living at home, the mother’s physical and emotional care falls almost entirely to the narrator and I found it quite refreshing to hear a man speak honestly and with tremendous kindness of how he bathes, dresses and feeds his mother, all the time ensuring her dignity remains intact.

The second thing which makes Scar Tissue a unique dementia narrative -especially amongst other similar carer-centric narratives- is the way the mother’s illness and eventual deaths completely upends the narrator’s life. Faced with the possibility of losing his connection with his mother he places every other aspect of his life -career, marriage, family- on hold and becomes almost obsessed with visiting her and caring for her. His marriage falls apart. He loses all sense of satisfaction in his job. Eventually his mental health deteriorates to a point where he no longer sees the point in life. It’s not an easy read, but Scar Tissue is one of the few fictional accounts I’ve come across where loss and grief associated with the dementia experience is explored in a really comprehensive way. As such, I found it a bleak but nonetheless important read. 

Scar Tissue was published by Chatto & Windus in 1993 

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Book Reviews

“Erasure” by Percival Everett

I’m just going to begin by laying my cards on the table. Erasure is an absolutely brilliant novel; one of the most interesting books I’ve read this year. It was recommended to me by the novelist Keith Ridgway when I asked for suggestions of novels which explored diversity in dementia narratives. The dementia aspect of the novel is quite slight but still incredibly interesting. It also provides the catalyst for much of the action in the novel. I was particularly drawn to the hybrid form of Erasure. It includes a novel within a novel, a lecture, various fragments and another intriguing plays on linear form. It doesn’t surprise me that this novel won the Hurston/Wright Legacy Award for Fiction in 2002. I’m looking forward to reading more work by Everett now.

The plot of Erasure is an intriguing one. Monk is a black American academic and writer of high brow novels which do nothing commercially. At times he seems to live in the shadow of his grandfather, father and siblings who, on the surface of things, all appear to have been more successful than he is. He also rages against the literary world and its stereotypes of black American culture. He’s particularly frustrated by the popularity of a recent novel which he believes exploits working class black culture, playing to the stereotypes. In rage he writes a short satirical novel in the same vein. He employs a pseudonym and is surprised, then slightly horrified when his ‘piss-take’ novel turns out to be a runaway success, eventually winning the National Book Awards despite his attempts to scupper it in his role as a judge. Morally, Monk wrestles with what he’s done but he also faces a more practical problem. His mother is living with dementia and requires full time residential care. Monk’s high brow books don’t make enough money to support him and his mother’s increasingly complex needs, while the novel he’s so ashamed of can keep them both in relative luxury. Erasure’s a very clever book. It calls into question stereotypes about race, class and the arts world. It’s also very funny in places and incredibly astutely observed.

As a dementia narrative it offers an intriguing picture of an older, black woman, struggling to hold on to her dignity. There’s a really powerful scene in the residential care facility when she no longer recognises her sons and a funny, but also poignant take on night time wandering where the old woman manages to row herself out to the middle of the lake. Erasure also gives a fantastic insight into healthcare provision in the USA. It does not shy away from exploring issues around financial support and class within the context of dementia. Erasure was a refreshing, irreverent and eye-opening look at race and class in modern America. Everett cleverly explores the way dementia intersects with both these issues and many more.

Erasure was published by Faber and Faber Limited in 2003 

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Events

Save the Date – Dementia Fiction Festival

We want to flag diary dates for our upcoming two-day festival/conference exploring dementia and fiction. It will take place at Accidental Theatre, Shaftesbury Square, Belfast on Wednesday 15th and Thursday 16th September 2021.

The festival will be hosted by the project team and will include keynotes, panels, workshops and readings. Writers, academics, people living with dementia and umbrella organisations will all be coming together for this important conversation, and the organisers hope many of you will join them too, either in person or online. Unfortunately due to Covid restrictions, there’ll be limited availability for in person places at the festival but all the sessions will be accessible online.

Further information and booking details to come. For now, please save the date. You can find out more about the Dementia Fiction project by following on Twitter @FictionDementia or visiting the project website https://blogs.qub.ac.uk/dementiafiction/  If you have any questions at this stage, please contact Jan Carson (jan.carson@qub.ac.uk)

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Films

Supernova

Supernova is Harry Macqueen’s second movie. It was both written and directed by Macqueen who spent a substantial amount of time researching dementia and visiting dementia support groups. The film is set against the stunning backdrop of the Lake District and features two very established actors and longterm friends playing lovers coming to terms with a young onset dementia diagnosis. Sam (Colin Firth) is a concert pianist. Tusker (Stanley Tucci) is a writer and his partner of twenty years. Tusker’s beginning to develop the symptoms associated with a rare form of dementia which impacts his spatial awareness and balance as well as memory. I felt more could’ve been made of this fact. At times we see Tusker struggling with balance and fine motor skills but I feel Macqueen could’ve made more of the opportunity to inform his audience that not all dementias are predominantly related to memory loss.

Sam and Tusker have loaded up their camper van and taken off on a road trip across England, revisiting some of their favourite places around the area where Tusker grew up. They also stop to visit Sam’s sister, friends and family in his old home and plan to finish the trip with a piano recital, Sam’s first for a number of years. As the trip progresses it becomes increasingly clear that Tusker’s dementia has progressed to the point where both men must make some big decisions about their future. Tusker has planned to take his own life before the symptoms become too much for him to manage. When Sam discovers this plan, he is utterly devastated and raises some important questions about the nature of care and relationships.

There’s a lot to like here. The scenery is beautiful. The soundtrack is gorgeous. The party scene where Tusker gathers all his friends and family for the final time is a very moving piece of writing. It was fantastic to see a gay relationship explored as a dementia narrative and while I’m still not entirely convinced by the casting of two straight men in these roles, Firth does an admirable job and Tucci is a joy to watch. It was also refreshing to see a slightly more nuanced portrayal of dementia with a nod to symptoms beyond memory loss and linguistic confusion though as I said above, I do think more could have been done with this. 

A few of the scenes were a little cloying. Less said the better about the closing scene where Sam plays his recital while somewhere, off screen, Tusker is supposedly taking his life. The film should have ended before this point. There was no need for an extra layer of schmaltz. I felt the movie rushed the conversation around end of life choices. There was so much more to be said and it seemed quite unbelievable that Sam should change his mind on this massive issue so rapidly. I also really hated the inclusion of a persistent extended metaphor about stars and constellations. It felt clunky and very much like it was trying too hard. And finally, my usual rant. Here we have a successful writer and a successful musician with enough money to make decisions about how they wish to live out the last part of their relationship. There is a notable gap in the world of dementia and film when it comes to exploring the working class experience. I’d like to see some characters who aren’t absolutely loaded for a change.

Saying this, Supernova is a pretty good watch. Catch it while it’s still in the cinema.

Supernova was written and directed by Harry Macqueen and released in the UK in June 2021 

Categories
Book Reviews

“An Unravelling” by Elske Rahill

Irish author, Elske Rahill’s second novel is an epic beast. It follows the lives of four generations of women in a large family, over a particularly turbulent period. Molly is the matriarch of the family. She’s in her eighties and very much focused upon helping her granddaughters, Cara and Freya bring up their young children. Molly is the wealthy widow of a famous Irish artist and as her life draws to a close she looks back on her childhood and early marriage and also becomes increasingly concerned with how she’ll provide for her granddaughters and great grandchildren after her death. Molly has a substantial estate and is closer to the younger generation than her own three daughters. When her health fails and Molly begins to develop dementia, issues concerning the will and financial provision threaten to tear the family apart.

Rahill is a beautiful writer. Her prose is rich and full of poetic imagery. An Unravelling is quite a long, slow read but I appreciated the way it took its time to get underneath the characters’ skin, bringing each of the women to life for the reader. Molly, in particular, is incredibly well-written. This is a character living with dementia who has both a past and a meaningful present. She is an essential part of her granddaughters’ lives, full of warmth and wit and humour. Rahill tracks her unravelling with great care. Molly’s language and meandering reminiscences perfectly convey both the dementia experience and an inherent respect for this dignified and forthright character.

I also appreciated the deep dive Rahill takes into the practicalities of dementia care. This is a novel which very much explores the unpleasant world of finances in regards to healthcare provision and inheritance. It’s something I’ve often heard talked about but rarely see reflected in dementia narratives. Molly’s own mental unravelling mirrors the unravelling of her family as they let issues surrounding finances pull them apart. An Unravelling is a book about women within a family unit; the bonds they form and how these bonds are placed under strain. It’s a wonderful, immersive read and another great addition to the canon of Irish dementia narratives. I would highly recommend.

An Unravelling was published by Head of Zeus in 2019