Tag Archives: Dementia

Imagine a Society of Readers

Reading is good for you. We know this. But imagine if it were national policy to promote reading with the aim of creating a Society of Readers. What would it look like? What are the policy implications of such a vision?

A Society of Readers (2018)

The Reading Agency commissioned the report A Society of Readers from Demos. You can find the full document on the DEMOS site or on the Reading Agency site here.

What are the major social challenges facing our society in the future and how can reading help? These are the questions that the report sets out to investigate and using research (you know, experts) has provided some interesting and inexpensive policy proposals.

The challenges: 

loneliness, especially amongst the growing number of old people

mental health problems

dementia

lack of social mobility

The research findings:

There is evidence on which to build the knowledge that reading has an important part to play in tackling each of these challenges. Reading wards off loneliness, especially where it is accompanied by opportunities for discussion of books, in groups or with reading buddies. The report celebrates book-based social contact.

It is possible to assist someone suffering from mental health difficulties, especially among the young, through reading material. Shelf Help in schools and libraries is becoming more common. You may have heard of poetry pharmacies, prescriptions for reading as aspects of non-medical interventions. You might be familiar with the handbook The Novel Cure: an A-Z of Literary Remedies by Ella Berthoud and Susan Elderkin.

Reading promotes empathy and is an excellent reason for encouraging reading in schools, and a love of reading among the young. It is the basis of Neil Gaiman’s eloquent plea for libraries to the Reading Agency in 2013.

There is evidence that reading helps boost performance on tests, and increases a young person’s opportunities to proceed to higher levels of education. 

The recommendations: 

It’s no exaggeration to say that reading can transform British society. (cover)

The report provides 12 recommendations for the government, all based in the research evidence and successful practices that already promote reading.

What would a society of readers look like? 

That is what we mean by a ‘society of readers’ – a society that values reading, and which is in turn sustained by the benefits that reading brings. A society that saturates itself with books for everyone at every point of life. A state that marks significant life events with the gift of reading – especially to its children. A school system where children, by and large, arrive with a love of reading that was handed down to them by their parents who were supported at various points in their life to turn to books themselves. A school system where learning continues throughout the year ensuring that disadvantaged children can engage with reading groups – surrounding themselves with books even and especially if their home environment lacks them. A society whose clinicians understand that reading can have a medicinal quality when it comes to illnesses such as anxiety, ADHD, depression and even dementia. A society where a well-resourced retraining and further education systemencourages reading beyond the classroom too. A society where workplacesmay even carve out the time to allow their employees the time to attend further reading classes and reading groups. And a society that does not forget that its ill and ill-informed not only have cognitive needs but imaginations that can still light a fire too – and where we encourage them to share these imaginations by bonding with their contemporaries over the written word. (p41)

(Note: to make this paragraph easier to navigate I put the main policy locations in bold.)

And so why …?

Why are libraries suffering so badly from the policies of austerity?  The latest figures reported by CIPFA (Chartered Institute of Public Finance & Accountancy) can be found in a press release from December 2018 here. The only figures that have gone up relate to volunteers and to their hours. 127 libraries closed. Spending was down by £30m and 712 full-time jobs were lost. That is in one year.

So while research and reading charities show that there are some inexpensive and beneficial policies to be promoted to help society, councils and government continue to strangle libraries. That’s why we need to imagine a Reading Society. And readers are good imaginers.

A Society of Readersby Sacha Hilhorst, Alan Lockey, Tom Speight published in 2018 by DEMOS for the Reading Agency. 

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Writing as therapy, despite Zadie Smith

… most writers groups moonlight as support groups for the kind of people who think that writing is therapeutic. Writing is the exact opposite of therapy. [Zadie Smith, from  interview on Random House site*].

Really!!? It’s a poor arguments that uses the phrase ‘the kind of people who …’. And that suggests underhandness by the choice of the word ‘moonlight’. I wonder if Zadie Smith has reconsidered this rather sneery comment. She is an excellent writer herself, of course, and one who knows about the craft and skill of writing as art. But she should know that for some people writing is therapeutic.

145 old handsLet us make a distinction between writing for publication (art) and writing as therapy and probably not for publication.

Therapeutic Writing

For people who are hurt, traumatised and perhaps depressed, writing is often part of their recovery. Therapeutic writing has a pioneer: James W Pennebaker. It has 30 years of established research and guide books, such as Gillie Bolton et al’s Writing Works. And it has many, many practitioners, who use writing as part of a therapeutic process, in groups and in individual support. We should not be surprised that writing is beneficial – both art and music therapy are well established.

In addition to individual therapeutic writing we can note that it has also been used to help people in groups.

For survivors of torture

At Freedom From Torture there is a writers’ group called Write to Life. The members are refugees and their mentors. The refugees have experienced violence and torture and writing is part of their healing process. FFT also has a bread-baking group, art therapy and a gardening group. Therapeutic activities are not limited to writing and talking. Some of the benefits come from the social aspects of the group’s activities.

239 The Land Hasani

For people with dementia

In Reading Writing and Dementia I described how people with dementia have benefited from writing therapies. You can listen to a podcast of an event held by English Pen at Free Word Centre in March 2014: Dementia and the Power of Words.

Gemma Seltzer’s article (in 69 Mslexia March/April/May 2016) describes co-writing with older people in a project funded through Age UK. In the project called ‘This is How I see You’, Gemma talked to many of the people in a day centre and returned with a poetry portrait of each of them. She comments that it raised issues about her right to write about someone else’s experience of dementia.

For prisoners

In prisons, reading and writing can make a huge difference to prisoners’ lives. Many prisoners have very limited literacy skills. There are many projects helping prisoners to learn to read and to read more. The Writers in Prison Network uses reading and writing workshops and mentors to achieve their aims. Their strap line is ‘helping you change for the better’. Here’s a link to a Day in the life of a writer in residence.

How does therapeutic writing work?

It is the process of writing that helps in the therapeutic process. Sometimes it the expression of feelings, too dangerous or painful to say out loud, but needing some articulation. Sometimes it is the act of choosing words, metaphors, analogies that opens up thinking and reactions in the writer. Metaphors and imagery are ways into understanding depression, for example. And the metaphors and images we use, unconsciously, to make sense of our lives, can be revealed and new ones tried out through writing.

Sometimes the act of choosing words, in writing clarifies a thought. A writer can then reflect and learn from their insights, rather than being locked in a maddening repetitive cycle of emotions. How do I know what I think until I write it down?

Creative Writing Class, Southtown USA by Leesa February 2009 via wikicommons.

Creative Writing Class, Southtown USA by Leesa February 2009 via wikicommons.

Sometimes the significance is in being heard – by a group, a therapist or a friend. And sometimes the responses of a group to a writer’s efforts has a therapeutic effect. Having a voice is to have agency and presence in the world.

Publishing therapeutic writing

The projects I’ve described are about the process of writing. This process does not necessarily produce art or even text for sharing. Sometimes writing that began with therapeutic intent emerges to have something to say to others and is worth publiccation.

Related

Not long ago, in January, I wrote a related post called Reading is good for you. Today’s post was conceived as a companion piece, but quickly turned into a post about therapeutic writing.

* I tried to check the source of Zadie Smith’s quotation, but although it is repeated many times on the internet I couldn’t find it.

Over to you

Where do you stand on this issue? Do you have experience of therapeutic writing?

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The Twilight Hour by Nicci Gerrard

The Twilight Hour by Nicci Gerrard is something different in the series of older women in fiction. The 16th post in the series considers a popular, contemporary novel. What picture of an old woman emerges in this novel?

192 Twlight H coverThe Story

Eleanor Lee is causing concern to her family because she is old and has accidentally set fire to her house. They want her to go into a care home. She is an intelligent and considerate woman, so after resisting she agrees. First, she insists, she needs help in sorting the stuff in the house, especially books, photographs and letters. Peter arrives to do the job, a young man with a broken heart.

Peter and Eleanor spend their evenings together and she gradually reveals her secret. He finds the evidence that would reveal the truth to Eleanor’s family. It concerns a love affair in her youth (seventy years before), at a time when such things were not publicly acknowledged. The events had destructive repercussions in Eleanor’s own family and changed the course of her life.

The story of the younger woman dominates. This novel is not about old age, for the central story is the young Eleanor’s. Nothing is changed for the old woman by telling her secret to Peter. Eleanor achieves no resolution of her doubts about what happened, no accommodation or relief, no desire to reveal her past to her own children. Nothing in the life of old Eleanor changes by revisiting her past.

The Old Woman

Eleanor Lee is 94, nearly blind, but independent minded. She is feisty but foresees decline. This portrayal of an old woman draws heavily on the idea of ageing as decline. It is a prevalent view, almost unquestioned, in our society. Here is Eleanor describing to Peter how she sees her future:

‘You do not understand – indeed, why should you and how could you? – the gross indignities of old age.’

‘Indignities?’

‘Yes. Soon, I will very probably need someone to cut up my food. To wash me. To cut my toenails. To pluck the little coarse hairs from my chin. To wash my dirty clothes. To take me to the toilet. To wipe my bottom. I can’t see if you are blushing but you probably are.’

‘No, I’m not.’ Indeed, Peter did not feel embarrassed by the old woman’s words; he almost felt uplifted by them.

‘Then I’ll become incontinent. I’ll dribble. People will spoon mush into my mouth.’

‘This all sounds rather drastic, when you seem so strong, so self-reliant.’

‘Ageing is drastic. It is very bodily. Maybe I’ll start to lose my memory; very probably I will. We can’t escape these things, you know. Bit by bit I’ll go into the darkness. I won’t be their mother any more, or their grandmother, their great-granny. I’ll be like an ancient leaking baby.’ (49)

The intended effect on Peter, and the reader, is of shock at the horrors of old age – decline into ‘an ancient leaking baby’. It is not clear to me why Peter ‘almost felt uplifted’ by what she says. The use of the word ‘almost’ is ambiguous, and what is uplifting about her words? The revolting picture she paints is in contrast to her actual situation, for she manages a household with support, and is not dependent for everything, every personal thing, on other people. Perhaps this image, put into Eleanor’s own mouth, of decay and dependence is intended to draw attention to the contrast between the old and the young woman.

There is a second depiction of fearful oldness in the character Meredith, Eleanor’s vindictive step-sister. Meredith suffers from dementia, and Peter and Eleanor pay her a visit, which is another vision of hell. Is the reader meant to be frightened or disgusted by the decay of old age?

The novel is narrated as if, since the grande passion that is at the heart of the novel, there has been very little of importance in life for this old woman. It seems unlikely to me that after seventy years, the love affair would still have been the main story that Eleanor told about herself at 92, especially as Nicci Gerrard suggests that she had an important career in teacher education, brought up children, was independent from an early age. Are women defined by their relationships to men, or is that only in popular fiction?

I was not convinced that Eleanor would so strongly have wanted to keep her secret from the younger generation. And that she is capable of telling it to a stranger. Did the secret matter so much? Is the framing of the main story, as the reminiscences of the old woman, a plot device?

What we learn

We are invited to agree that the preoccupations of the younger Eleanor Lee would remain into old age – the necessity of keeping her secrets hidden. To this end, Eleanor sets fire to the filing cabinet, and unwittingly to the house, and then employs the troubled young man to find and destroy the evidence and to listen to the story.

The Twilight Hour is at heart a historical romantic novel about a love affair at the moment when Britain was entering the Second World War. The old woman is attractively drawn, but nothing is changed by her revelations, and we have to believe that all that matters in one woman’s long life was a brief passion, experienced seventy years before.

The Twilight Hour by Nicci Gerrard (2014), published by Penguin pp407

 

To view all posts in the Older Women in Fiction series, please click on the relevant category or see the list on the page Older Women in Fiction.

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Elizabeth is Missing by Emma Healey

Why is this book so popular? And what has it to say about older women? The judges of the Costa First Novel Award in 2014 said of Elizabeth is Missing

This outstanding debut novel grabbed us from the very first page – once you start reading you won’t be able to stop. Not only is it gripping, but it shows incredible flair and unusual skill. A very special book.

151 E missiing cover 3It’s doing really well in the best seller charts: #9 in the Guardian Bookshop list and #6 in the London Review of Books list. 17,443 copies sold to date and #3 in overall paperback fiction chart.

It’s included in the list for the Richard and Judy WH Smith Book Club and the Radio 2 Book Club.

Congratulations to Emma Healey.

(This is the 12th in the series of Older Women in Fiction reviews that I post every two months. For the full list see here.)

The Older Woman

Maud is old and becoming very forgetful, suffering from dementia. She is the narrator, which is an ambitious aspect of the novel: the ultimate unreliable narrator? At the start of the novel she lives on her own, cared for by her daughter Helen and a professional carer, Carla.

She [Carla] picks up the carers’ folder, nodding at me, keeping eye contact until I nod back. I feel like I’m at school. There was something in my head a moment ago, a story, but I’ve lost the thread of it now. Once upon a time, is that how it started? Once upon a time, in a deep, dark forest, there lived an old, old woman named Maud. I can’t think what the next bit should be. Something about waiting for her daughter to come and visit, perhaps. It’s a shame I don’t live in a nice little cottage in a dark forest, I could just fancy that. And my granddaughter might bring me food in a basket. (3-4)

The forgetfulness is evident from the first chapter when she buys yet more tinned peaches to cover her memory lapse in the local shop. Her condition worsens as the novel progresses. She moves to live with Helen. A strategy to cope with her growing confusing used by Maud is to write herself notes. However, these accumulate and she is unable to make much sense of them.

The thing is to be systematic, try to write everything down. Elizabeth is missing and I must do something to find out what’s happened. but I’m so muddled. I can’t be sure about when I last saw her or what I’ve discovered. I’ve phoned and there’s no answer. I haven’t seen her. I think. She hasn’t been here and I haven’t been there. What next? I suppose I should go to the house. Search for clues. And whatever I find I will write it down. I must put pens in my handbag now. The thing is to be systematic. I’ve written that down too. (22)

The dominant thought in Maud’s head is her friend Elizabeth. She repeatedly tells her daughter, ‘Elizabeth is missing’.

We also come to see Maud as a young girl, through her memories (more reliable) and of the tragedy in her teenage years when her sister Sukey disappeared. This second disappearance is Maud’s concern and shapes the novel’s narrative.

Maud is an interesting character, therefore: a forgetful old woman but also a lively teenager.

The Story

The title suggests that the mystery to be solved is the disappearance of Maud’s friend Elizabeth. But it becomes apparent that she is still bothered by the unanswered question of what happened to her sister. Was she murdered by Frank, her spiv husband? Or did she disappear to escape some problem? And why has half of her compact case turned up in Elizabeth’s garden after all these years?

151 E missing cover 1Maud can remember all the clues she uncovered when she searched for her missing sister. Eventually both mysteries are more or less resolved, but not before Maud has got into trouble for her inappropriate behaviour, especially towards Elizabeth’s son. It is revealed that she has been told several times that her friend Elizabeth had a stroke and is in hospital, and that she has even been to visit her.

The early part of the novel is concerned to establish Maud’s limitations. I found that it took some time to move further into the story and for the twin problems of the two missing women to emerge. In some ways this reconstructs Maud’s understanding of events, fragmentary, disconnected, illogical, always just out of sight. The first person narrative carries this well.

What we find

We get a good look at the importance of memory in managing everyday life, in learning, how change affects people, and the experience of dementia. It also reveals the generosity of Helen, and of her daughter Kate who treats Maud with respect. Some of the muddles are amusing, and reveal that dealing with Maud can be frustrating while other responses are abusive and abrupt.

Brain picture via Wikimedia. This illustration is from "The Home and School Reference Work, Volume I" by The Home and School Education Society, H. M. Dixon, President and Managing Editor. The book was published in 1917 by The Home and School Education Society. This illustration of the parts of the Brain can be found on page 368. The parts are A. Cerebrum; B. Corpus Callosum; C: Medulla Oblongata; D. Arbor-Vitae; E: Cerebellum, F: Pons Varolii

Brain picture via Wikimedia. This illustration is from “The Home and School Reference Work, Volume I” by The Home and School Education Society, H. M. Dixon, President and Managing Editor. The book was published in 1917 by The Home and School Education Society.
This illustration of the parts of the Brain can be found on page 368. The parts are A. Cerebrum; B. Corpus Callosum; C: Medulla Oblongata; D. Arbor-Vitae; E: Cerebellum, F: Pons Varolii

Despite losing her memory and becoming increasingly confused, Maud is not a figure of pity. Rather we admire her determination to get to the bottom of both mysteries and to deal with her difficulties with determination and good spirit. But it is in the way she behaves that she implicitly claims the respect that is due, and the dignity of her age.

The purpose of fiction is to take us into new worlds and Emma Healey has done this. We hope for more books from Emma Healey.

More (some links)

Annethology reviewed a number of novels related to dementia in one post: Literary Dementia.

Emma Healey on the Alzheimer’s Research UK blog

Simon Savidge on Shiny New Books.

Elizabeth is Missing by Emma Healey (2014) published by Penguin Books. 275pp

Have you read this book? What was your view?

 

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Reading, Writing and Dementia

Dementia haunts us as we age, more than almost any other affliction. Losing the ability to be coherent, to read books, to tell the story of your life, these things make us fearful. But as we pass those milestones, 50, 60, 70 and on, which of us has not thought of what might happen? And as we experience those so-called senior moments, who has not wondered if they are increasing in frequency? At the moment I am fortunate that no one I am close to is suffering. Words, reading and writing them, have therapeutic effects I know. So I did a little research and quickly found that words can change lives for those suffering from dementia.

27 older w

Reading and dementia

Get into Reading, organised by The Reader Organisation, is a nationally acclaimed project, a positive health and social care intervention that has been adapted for dementia groups. Two key features of the intervention are the emphasis on serious, ‘classic’ literature, and reading aloud followed by open-ended discussion. I like the determination not to dumb down the material.

Short poems work well for people with dementia it has been found. This is probably because the language is more compressed and striking than prose; they are often contained on one page. Many of the participants in the groups studied were of the generation that learned poetry by heart in schools and even those with the most severe dementia could recite poems they learned at school.

The Reader Organisation has researched the effects of Get into Reading with people suffering from dementia and found

  • improved mood for 86% of readers
  • greater concentration for 87% of readers
  • increased social interaction for 73%
  • less agitation for 86% of readers

‘Isn’t it funny? We come in with nothing and go out with all these thoughts,’ said a reading group member, living with dementia, from Devon.

DSC00008

Writing and dementia

I came across two projects.

Dementia Authors’ website in our own words was established in 2006 but I couldn’t find out if the project is still active. The process involved Anthea McKinlay, writer-in-residence, assisting the authors to write their care home story book. The gradual approach appears to allow the dementia sufferers to build up their contributions.

A second project is Living Words, run in association with English PEN. The link takes you to a video on the website, showing how the project encourages individuals to develop their own poems. ‘There is a goldmine of words to stir something up’.

You can read a poem written by a participant on the English PEN website here called I’m not used to anything like this.

The therapeutic power of words seems to be without limits. For prisoners asylum seekers and refugees, for individuals …

 

An event

Dementia and the Power of Words at Free Word Centre, London EC1R 3GA on Wednesday 12th March 6.30 – 8pm. Details on the English PEN website here. I wish I could go and hear about the experiences presented on that day.

 

 

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