Month: March 2021

Categories
Book Reviews

“Frangipani House” by Beryl Gilroy

Frangipani House, Guyana born novelist Beryl Gilroy’s first book is set in her own birthplace. The novel’s title refers to a residential care facility where elderly women are sent to live out their final days. Mama King, the novel’s chief protagonist is forcing to move into the home by a delegation of absent children and grandchildren. She’s quite convinced that she’d be better off managing by herself and goes out of her way to be as obstreperous as possible, frequently clashing heads with the home’s owner and ultimately making a break for freedom, to live on the streets with a rag tag collection of other homeless people who give her the care and kindness she has not experienced from either her family or the people they’ve paid to look after her.

Frangipani House, like many texts of its era, does not use the term dementia, however it’s clear that Mama King is becoming more and more confused as the novel progresses. She frequently forgets where and when she’s living, mixing the past with the present and has conversations with people who aren’t present. She is not as capable of looking after herself as she’d like to think. Mama King also gives us an insight into how the other residents of Frangipani house are treated. Several are much more confused than she is. Including one ninety year old lady who inconveniently passes away, just before her birthday celebrations. The staff decide there’s no point wasting all the party food. They wheel the dead woman out in her chair and tell the other residents she’s just napping so they can continue to celebrate. A number of anecdotes like this reveal how the elderly residents are not treated with the respect and honour they deserve.

Frangipani House is a wonderful exploration of how ageing is perceived within this particular African community. The younger people talk a lot about respecting their elders and yet, when it comes to delivering physical care, they are quick to institutionalize their parents and delegate responsibility. Gilroy also explores the role of the older woman. Mama King has been a mother not only to her own daughters, but also to their children. Her girls, having emigrated to America, send their children home to be raised in Guyana. Gilroy’s novel questions how fair this system is. The children expect their mothers to provide free childcare, but when it comes to caring for these women in their later years, the same children shirk their responsibility. Frangipani House is a slim novel yet it is rich with detail and colour and full of well-placed observations about what it means to be elderly, female and African.

Frangipani House was published by Heinemann Educational Books in 1986 

Categories
Book Reviews

“The Leisure Seeker” by Michael Zadoorian

Ella and John have been together for more than sixty years. Now in their eighties Ella has developed terminal cancer whilst John is living with dementia. Aware that they don’t have all that much time left together they decide to leave their home in the American Midwest and take one last long road trip across America to the California coast. They don’t inform their grown up children of their plan. They sneak away in their 1978 Leisure Seeker RV, (a campervan for those not familiar with the American terminology) and follow a route they’d followed years ago, when their children were much younger. 

John drives, though he’s increasingly confused and occasionally wanders off, sometimes even threatening Ella with violence. Ella organises everything, though she’s often in agony with her illness and becoming progressively more tired as the road trip drags on for days and days. Back at home, their children are frantic, imagining every variation on the worst case scenario. Little do they know. The couple are held up at knife point, suffer a bad fall and, on several occasions, John gets lost leaving Ella panicking and unsure what to do. When Ella phones home to check in with the children, she doesn’t tell them about any of this.

The Leisure Seeker is a strange little novel. It’s very readable, but the tone is quite odd. It’s hard to tell whether the reader’s meant to see this last adventure as a joyous celebration of a life well-lived, or an example of selfishness on Ella’s part. Though she isn’t technically behind the wheel, this is very much her road trip. John does as he’s told throughout the novel. For me this raised real questions about autonomy and freedom. It’s impossible to know whether a man with a cognitive impairment would willingly choose to drive across half of America in a campervan if he understood how dangerous it was. There’s also a strange change of tone at the novel’s close. For two thirds of the book it feels a little like a buddy movie: upbeat, funny, slightly sentimental, and then towards the novel’s end things take a dark turn. I don’t want to give away any plot spoilers but the final scene kind of calls into question the book’s basic premise, that it is possible to live well and fully with dementia. 

Saying all this, for a piece of commercial fiction, the dementia narrative is reasonably accurate and seems to be well-researched. The novel is narrated throughout by Ella so it’s her understanding of her husband’s condition and experience the reader is being presented with. I think this is important to note. From the perspective of dementia, the main questions which The Leisure Seeker left me with were all around autonomy and control. Is it ok that Ella decides everything for John, even if she is married to him?

The Leisure Seeker was published by Harper Collins in 2009

Categories
Book Reviews

“There Were No Windows” by Norah Hoult

The acclaimed Irish novelist, Norah Hoult wrote There Were No Windows during the Second World War when she was living in Bayswater, London close to the ageing writer, Violet Hunt. Hoult based her novel’s protagonist, Claire Temple very closely on Violet Hunt: garnering some criticism for how recognisable Hunt was in Temple’s character. The portrait is far from flattering. Claire Temple is a once popular society lady and reasonably successful writer who is now losing her memory. She is paranoid, delusional, frequently confused and often unpleasant to the cook, Kathleen and paid companion, Miss Jones who are now her only company. Outside the house, London is in the grip of the Blitz, with daily air raids, rationing and black out restrictions in place. Claire regularly forgets the War is going on as she drifts between lamenting her loneliness and fantasising about her former high life. Hoult has managed to create an incredibly believable archetypal spinster, (in the vein of Brian Moore’s Judith Hearne). She is not nice enough to evoke the reader’s sympathy but is pathetic enough to seem pitiful. 

The novel was first published in 1944 and is incredibly interesting because, though it doesn’t name Claire’s condition as dementia, it is one of the earliest extended explorations of the illness I’ve managed to come across in fiction. Different characters explain Claire’s behaviour using different terms. She is senile. She is doting. She is frequently called mental. This is hardly surprising. The modern usage of the word dementia is a relatively recent development. Her symptoms suggest early stage dementia. Hoult uses her character’s dialogue and internal thought process to give us a really intriguing insight into how Claire herself feels about her condition. She wanders off in her slippers and suffers from terrible insomnia. She is paranoid that the servants are plotting together and stealing from her. She has almost no short term memory and frequently repeats herself. She is, by the close of the novel, becoming aggressive and increasingly violent. None of the other characters, including the doctor, seem to know quite what to do with her.

As a period piece, There Were No Windows is incredibly useful and enlightening. It gave me a wonderful insight into how dementia was viewed back in the war years. Claire is fortunate enough to have a house and financial resources to utilise. It is likely that without finances, she would have been quickly institutionalised. And yet, her experience is far from pleasant. She has lost autonomy over her body, her finances and her creativity. She is constantly lonely, and particularly misses the intellectual company she was used to. Her staff are rude and dismissive. They don’t attempt to understand her condition. They fluctuate between bullying and infantilising Claire. There were so many moments in this novel when I wished to sit them down and explain why Claire’s dementia was causing her to act out of character. 

There Were No Windows is a stunningly written novel -perhaps even one of Hoult’s best- and I thoroughly enjoyed it as both a piece of fiction and an incredibly believable dementia narrative. There’s still so much more education about dementia which needs to take place but I’m so glad people are no longer quite so ignorant about the illness. Poor Claire’s treatment is horrific and dehumanising. I’m thankful this is no longer the norm.

There Were No Windows was published by Readers Union in 1946

Categories
Events

Dementia: Feel It Through Fiction at Imagine Belfast

Free online talk as part of the Imagine Festival

27th march: 1.00pm

jump to tickets

Has reading fiction ever made you laugh, cry, or feel something? How can words on a page create characters and represent fictional experiences to such an extent that we not only believe, but are moved by them?

A recent ‘boom’ in fiction representing dementia has inspired QUB researchers to investigate how the language is used gives an insight into the experience of people living with dementia. This interactive talk explores how dementia is represented in fictional language, how readers respond to it, and why. 

The speaker is Dr Jane Lugea (Senior Lecturer of English Language at Queen’s University Belfast), who specialises in Stylistics, the language of literature. Dr Lugea is Principal Investigator on an ongoing AHRC-funded project, ‘Dementia in the minds of characters and readers’, which investigates how dementia is represented in literary language and how it offers a window into understanding the condition. The project benefits from the expertise of Co-Investigators Dr Gemma Carney (Senior Lecturer in Social Policy at QUB) and Dr Paula Devine (Co-Director of ARK Ageing Programme), as well as Dr Carolina Fernández Quintanilla. Writer and older people arts facilitator, Jan Carson, is curating a great range of outreach activities around the project’s themes: dementia, creative writing and reading, and understanding each other better through the power of narrative.

Categories
Book Reviews

“Flight” by Oona Frawley

Irish novelist, Oona Frawley’s debut novel Flight is a beautifully observed portrait of four lives intersecting. It’s set just outside Dublin in 2004 as a referendum on citizenship approaches. Sandrine is a pregnant Zimbabwean women who has left her husband and son at home seeking to better herself and ultimately gain citizenship for them all in Ireland. Sandrine finds herself working as a live-in carer for Tom and Claire, a rich retired couple who have lived in Ireland, America and Vietnam, following Tom’s career as a spice importer. Tom is now living with advanced dementia and their daughter Elizabeth hires Sandrine to look after him and also keep an eye on Claire, who is increasingly confused herself. Tom is soon moved to a residential care facility and passes away soon after. Within a few month’s Claire’s conditioned deteriorates in a similar way and she too passes away in a nursing home.

I really enjoyed reading Flight. The prose is so carefully crafted and evocative. As the perspective moves between the protagonists it’s really easy to imagine the same situation as slightly different when seen through their eyes. It’s very much a novel concerned with the idea of memory. Whilst Elizabeth struggles with how she was brought up, flitting between various countries and various homes, Claire longs for Vietnam and the lifestyle of her younger days. As her memories merge and become confused, her senses frequently take her back to Vietnam. Sandrine is also constantly interrogating her understanding of the past and what it means to belong to a place. Thrown together, the big quiet house the three women inhabit, comes to feel like a kind of dream scape where time and reality are both confused. There’s also a sense that the women are struggling to connect. They all seem to be lonely, though they’re constantly together. They don’t seem to know how to communicate with each other. It’s only when Sandrine has her baby that she and Elizabeth finally connect, bonding as equals over the baby and talking honestly about their lives.

As a dementia narrative, Flight is intriguing. There are very few of the common tropes played upon here. Neither Tom nor Claire is prone to wandering. They don’t seem to forget each other or confuse their daughter for someone else. Their journey with dementia is more of a kind of gentle erasure. They are less and less present as the novel progresses. Both pass away calmly in their sleep as if succumbing to the last stage of what’s been a kind of extended dream.

Flight was published by Tramp Press in 2014 

Categories
Films

Quartet

Based on Ronald Hardwood’s successful stage play of the same name, Quartet is actor Dustin Hoffman’s directorial debut. The film adaptation’s absolutely packed to the gills with wonderful British actors of a certain vintage. It’s refreshing to see a film with so many meaty parts for older people. The plot’s quite simple. Beecham House is a retirement home for elderly musicians and it’s threatened with closure. When the movie opens Cedric (Michael Gambon) is rallying the troops. They’ll organise a gala performance showcasing their talents in order to raise enough money to save their home. The gala’s in need of a headline act and when Jean (Maggie Smith) moves into Beecham House, everyone assumes the concert is saved. Back in the day Jean was the star turn in a fantastic quartet comprising of fellow residents, Reg (Tom Courtenay), Wilf (Billy Connolly) and Cissy (Pauline Collins). You’ll not be too surprised to hear that their plans don’t go smoothly but eventually the gala concert takes place and the home is saved. 

As the film depicts a large residential care facility, a number of the minor characters are living with dementia. The film makes much of their forgetfulness and general confusion but shies away from exploring the more difficult aspects of the illness. For the most part, this is a very gentle exploration of dementia. The older people are depicted as a little doddery, sometimes in a comedic fashion, but never angry or disturbed. The character of Cissy, played by Pauline Collins is given a little more scrutiny. She’s clearly living with dementia. At the film’s opening Reg and Wilf discuss her condition and agree she’s starting to deteriorate. However, aside from several small incidents, (a fall which leads to a marked decline in her cognisance and a brief lapse in awareness when she tries to “check out” of Beecham House, mistaking it for a cruise ship), it is almost possible to dismiss Cissy’s dementia as an artistic affectation or part of her “ditzy” personality. I didn’t find the depiction particularly believable although I thoroughly enjoyed her character and could see Hoffman was using this aspect of her character as a device to aid the plot and the comedy.

Quartet is a thoroughly delightful film. It celebrates and champions older people and also highlights the importance of friendship and community. I’m not sure it’s the most accurate depiction of dementia I’ve ever seen but it left me thinking it was heartening to see a character with dementia being allowed to perform and show that she’s still an amazing singer. It’s also lovely to see a depiction of the kind of support networks and community between older people I often come across in the real world. 

Quartet was directed by Dustin Hoffman and released in the UK in January 2013 

Categories
Events

Reading Group Call Out

Do you enjoy reading and talking about books? Would you like to take part in a fun, interactive reading group looking at how dementia is represented in fiction? We’re looking for enthusiastic individuals with little or no personal experience of dementia to take part in an important research project based at Queen’s University Belfast. All contributions from the group will play a valuable part in exploring how dementia is depicted in contemporary novels. 

The online reading group will meet on Zoom one evening a week for 6 weeks during April and May. They’ll take place on Thursday evenings at 7pm and will last a maximum of 90 minutes. At each meeting, the researchers will read two short excerpts from two different novels while you follow along with the print copies provided. You’ll be asked to complete a short questionnaire and get involved in a group discussion. We’re interested in your opinion and value your ideas and contributions. There’s no such thing as a wrong answer. The sessions will be audio-recorded so that they can be transcribed for our research. 

If you’re interested, you can find out a little more about the project on our website. If you’ve got any questions or would like to sign up please get in contact with Carolina at dementiafictionreadinggroup@gmail.com

We’d hoped to be conducting these readings groups in person and getting to know you in real life. As we can’t provide the usual tea and cakes, we’ll be posting out welcome packs including sachets of hot drinks and biscuits to be enjoyed while we chat. We’d also like to offer you a £20 book token as a thank-you for completing the reading group sessions. 

Spaces are limited so we’d encourage you to sign up asap. This is a fantastic opportunity to help out with an important research project whilst getting to know some new people. We’d love to have you on board. 

Categories
Publications

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.

Categories
Films

Marjorie Prime

Michael Amereyder’s ambitious feature film, Marjorie Prime is based on Jordan Harrison’s play of the same name. In the film Lois Smith plays Marjorie, a role she originally played on stage. Marjorie Prime explores issues around AI and ageing in what could’ve been a really interesting way. Marjorie is an elderly lady living with dementia. Her daughter, (played by Geena Davis), and son-in-law, (played by Tim Robbins), live with her. They also employ a live in carer. The depiction of early dementia is very accurate. Marjorie is confused and occasionally forgetful but still very present and able to interact with her family. Her family have purchased a prime of Marjorie’s late husband Walter, (played by Jon Hamm), to keep the old lady company and ensure her brain is stimulated. The prime is a kind of interactive hologram. It looks exactly like Walter in his forties. It talks to Marjorie, gathering up information and memories so it can gradually become more and more human-like in its interactions with her. 

The idea of the prime is really interesting. As Marjorie’s memory fades the information she’s feeding the prime version of Walter is less and less accurate. Her son-in-law also helps to programme the prime with snippets of information he remembers about their relationship. However, in an attempt to protect Marjorie, he censors all the disturbing memories and creates a past for her which never actually existed. I thought this was a fascinating illustration ofhow loved ones often interact with people living with dementia. As memory fades, there is an opportunity to censor, adjust and enhance the stories which are recalled, thereby shaping the person’s sense of reality and ultimately, themselves.

If Amereyder had further explored this idea with Marjorie and her prime, I think this could have been an excellent film. However, I felt it began to lose the thread a little when Marjorie died and her daughter, acquires a Marjorie prime, then the daughter dies, leaving behind a prime for her husband. The final scene shows the three primes talking, sharing a simple story about the family dog which is now so mis-remembered and adjusted, it bears absolutely no similarity to the original anecdote. I’d like to have seen more of the interaction between Marjorie and her prime and perhaps a little more depth to the direction. It feels quite flat in places, a lot like watching a recording of a play. In adapting the stage version for screen, I think Amereyder could have explored a little more of Marjorie’s background and the reality of her past.

Marjorie Prime was directed by Michael Amereyder and released in the UK in October 2017

Categories
Book Reviews

“Gratitude” by Delphine De Vigan

Translated from the French by George Miller

Gratitude is the sixth book by French novelist Delphine De Vigan. It’s a slender little novel, I might even call it a novella, and explores one simple idea in a really beautiful and tender way. Michka is an elderly lady living with dementia in a residential care facility. As her life draws to a close and her mind becomes increasingly confused she becomes more and more intent upon tracing the young couple who hid her from the Nazis as a child. She wishes to express her gratitude to these people before she dies. Marie is a young woman who visits Michka in the care facility. She’s pregnant with her first child and as she transitions into her new role as a mother she becomes more and more grateful for the way Michka cared for her as a child when her own mother was incapable of giving her the support she required. Jerome is a speech therapist who visits Michka twice weekly in order to help her retain her fading language skills. He grows fond of the elderly lady and, as she deteriorates, begins to rethink his broken relationship with his own father. Michka teaches him an important lesson about seizing every opportunity to make amends before it’s too late.

I really enjoyed this little book. Each of the characters is simply but powerfully drawn. The emotions are neither over nor under-played. I particularly appreciated the way De Vigan does not shy away from the more difficult aspects of ageing and dementia. Her story encourages the reader to sit with grief and sadness rather than try to avoid it. “Sometimes you need to acknowledge the void left by loss. Abandon distractions. Accept there’s nothing more to say.” And yet it is also an incredibly uplifting book. There is so much warmth and genuine fondness between the characters it is impossible not to acknowledge that Michka’s experience of her last days and weeks is anything other than meaningful. As the title would suggest, this is a novel about being grateful for the life you have been given, even when that life doesn’t turn out the way you’ve expected. It’s about finding peace in the midst of turmoil. It is a novel shot through with hope.  

I also appreciated the close exploration of how dementia has impacted Michka’s use of language. As a speech therapist Jerome is able to give the reader an insight into the aphasia and linguistic confusion Michka has to navigate every time she tries to speak. It’s intriguing and powerful in the English translation. I only wish my French was good enough to read it in the original version. This isn’t a high concept novel. There’s not a terrible amount of plot. It’s all about De Vigan’s exquisitely drawn characters and the way they pivot around each other, grateful for their friendship with Michka and determined to make the most of it.

Gratitude was published by Bloomsbury in 2021