Classic works of literature have been expertly adapted for those living with dementia and cognitive decline in an attempt to rekindle a love of reading in people who might otherwise struggle to read. By JUDE BARBACK.
I was delighted to see The Doll’s House by Katherine Mansfield included in the selection of books published especially for people with dementia. I’d studied the short story in high school, but hadn’t read it since, so I allowed myself an indulgent ten minutes to travel down memory lane.
My eyes were glistening as Our Else lays eyes on the little lamp and I wondered why the story moved me more now in my adult years than it did as a teenager. A better understanding of inequalities in our society perhaps? A deeper loathing of bullying now that I have children of my own? That’s the thing about literature – it grows with us.
What will The Doll’s House mean to me when I am 80 and possibly in some state of cognitive decline? The thought of not being able to read and appreciate literature one day truly horrifies me, which is why I was so excited to see the launch of a series of classics, especially adapted for people with cognitive impairment.
Among them are Little Women, a Sherlock Holmes mystery, a poetry anthology and a book of Katherine Mansfield’s most famous short stories.
How the books began
The books are the product of a collaborative research project by Dr Sally Rimkeit, psycho-geriatrician at Capital and Coast District Health Board, and Dr Gillian Claridge, an applied linguist and Dean of the Institute of the Pacific United New Zealand.
The two had long aspired to pool their areas of expertise to adapt various works of literature so that they could be easily read and enjoyed by people with dementia. They set up a small publishing company, Dovetale Press, to help achieve their goal.
Their project began with a pilot involving two focus groups: one with people who had mild to moderate dementia and the second with those who had moderate to severe dementia. The people in each group were given three versions of A Christmas Carol by Charles Dickens: the original, a children’s version, and a version that had been adapted especially for people with dementia.
Dr Sally Rimkeit said the focus group discussions were fascinating. The group members reminisced about books they had read and discussed what they wanted to read next. They talked about the difficulties they now experienced reading – things like losing their place, shortened attention spans, and so on.
Perhaps the most compelling feedback about the Christmas Carol books was that although they recognized that the text in its original form was too long and dense for their memory and concentration, they were emphatic that they “didn’t want to miss out on the rich imagery that Dickens uses”. This created a challenge for Rimkeit and Claridge; they had to simplify the text, while at the same time taking great care not to lose the book’s essence or the author’s voice in the process.
The feedback from the focus groups helped them develop the next series of adapted books.
“What was useful was chunking or shortening the storyline and using memory aides to help the reader keep track of the characters and plot,” says Rimkeit.
The original Little Women, for example, contains a lot of long, contracted sentences, which are difficult for people with dementia to read, says Rimkeit. So she and Claridge carefully shortened the sentences, provided chapter summaries and a cast of characters at the beginning, for readers to refer to and aid their memory.
Rimkeit says it was important not to infantilise the books in the process of adapting them.
“For example, Daisy’s Song is a poem written by Keats in the 1700s that is actually about a daisy looking up a woman’s skirt,” she says. “We’ve included it in the ‘laughter’ section.”
Ultimately the results of the pilot indicated that people living with dementia, even severe dementia, maintain a sophisticated command and appreciation of language. Readers enjoyed the original style and rhythm, and did not want the text oversimplified like a children’s book, which can be demeaning.
The importance of look and feel
The books are beautifully published. Each are around 65 pages long, approximately A5 size, with matte paperback covers. The text is in large, serifed font.
The layout decisions were informed by the focus group feedback. Rimkeit says while prior research indicated that a sans serif font is more appropriate, the focus groups felt that this lost the Dickensian feel. Older adults are typically more accustomed to a serifed font, too. The groups found it easier to read on a white paper rather than beige.
Nearly every other page has an illustration befitting the book.
Rimkeit says a lot of thought went into the illustrations. The Mansfield stories are enhanced with evocative paintings by famous artists including Van Gogh, Macke and Modigliani, each carefully chosen to help bring the stories to life.
Beyond the books
The books have been sponsored by Bupa and will be used in all 60 Bupa care homes. Adapting books for the needs of people with cognitive impairments fits with Bupa’s Person First approach to care which puts the individual and their needs first.
Each book has a foreword by their global director of dementia care, Professor Graham Stokes.
“Whether read by individuals at home, as a read-aloud activity in a day centre, or with a book club, I hope that they can provide a meaningful activity for many, and a useful resource for libraries in helping to create dementia-friendly communities,” says Stokes.
This is Rimkeit’s wish as well. These books are part of a drive to make libraries dementia-friendly, and to get dementia-friendly book clubs going in as many public libraries as possible.
The books are part of an ongoing research project to determine whether book reading is as effective as cognitive stimulation therapy in helping those with dementia. Rimkeit and Claridge will extend the pilot project to an international, randomised-control trial, also supported by Bupa, in 2017.
Rimkeit points to various other studies that give grounds for this hypothesis. One study used MRI scans to observe the brain’s reactions to language and found that the brain reacted more to Shakespeare’s original text with its play-on words and surprise element than when substituted with a more literal or obvious alternative. For example, this sentence in King Lear – “A father, and a gracious aged man… have you madded.” – is an ungrammatical, highly energised compression, yet evokes a powerful neurological response.
A study from the United States comparing book readers with non-book readers suggests that book reading have a 23 month survival advantage over non-book readers. While it doesn’t take into account cognitive impairment, the finding that older people who read books are likely to live nearly two years longer than those who don’t is compelling, says Rimkeit.
In fact there is very little research that looks specifically at reading and dementia and Rimkeit is eager to explore the impacts of the adapted texts in the next phase of research.
She shares with me a story: in the hospital she came across a man with progressive aphasia and an extensive background in literature. In reading him some poetry his face lit up and recognition flooded back to him. He has able to recite line after line and remained in a state of happiness for long while after.
After all, underneath all the complex layers of cognitive decline, remains the original person. Age and impairment are no match for a true love of language and literature. I suspect research will prove Rimkeit and Claridge to be correct: books could have a truly profound impact on those people living with dementia.