Dementia leads to many losses, including – for those who have been lifelong readers – the ability to read the kinds of books that once gave them so much pleasure.
According to a pilot study done last year by Wellington psychogeriatrician Sally Rimkeit and Palmerston North applied linguist Gillian Claridge, even people with moderate to severe dementia can benefit from joining a dementia-friendly book club. In fact, they found that residents in a secure dementia unit got more from reading and talking about three different versions of Charles Dickens’ A Christmas Carol – including one that had been specially adapted to meet their needs – than people whose dementia was less advanced.
“The thing that really surprised me was how engaged the people in the secure dementia unit were with the project, how much they enjoyed it,” says Rimkeit. “They kind of came alive and developed ownership of what they were doing. It was a really meaningful experience for them.”
It didn’t matter that they couldn’t always remember reading the books; simply taking part in the discussion prompted lively exchanges that often involved sophisticated use of language. At one point, for example, one participant asked what “covetous” meant, and another replied, “Covetous is when you take something and you keep it.”
“Then they had this whole repartee on that – it was just completely spontaneous,” says Rimkeit.
Based on the feedback they received, Rimkeit and Claridge made changes to their original adaptation of A Christmas Carol. That included replacing the sans serif font with a serif font – “It’s far less infantilising” – and writing a brief summary at the end of each chapter to remind readers what has just happened.
They have now produced another four books: adaptations of stories by Katherine Mansfield and Arthur Conan Doyle; an adaptation of Louisa May Alcott’s Little Women; and a book of poems that includes work by William Shakespeare, William Blake and Emily Dickinson.
All are illustrated with carefully selected images, and several include a cast of characters at the beginning to provide more clues for readers.
The five books will be used in an international study looking at the benefits of dementia-friendly book clubs. All the participants will come from residential-care facilities run by health and care group Bupa, which is sponsoring the project. As well as meeting in their care facilities, the book club members will visit public libraries to create a greater sense of community inclusion.
“We hope that the people with dementia will feel welcome and comfortable doing what libraries encourage – sharing the love of reading.”
Rimkeit hopes the study, being done this year, will provide the first robust evidence of the value of reading and talking about books for people with dementia.
If that turns out to be the case, she says dementia-friendly book clubs could provide a useful addition to other psychosocial interventions used to treat dementia sufferers. These include cognitive stimulation therapy, which involves regular themed activity sessions, and has been found to be as effective at improving cognitive function and quality of life as anti-dementia drugs.
“People with dementia need lots of psychosocial stimulation – so many of them are sitting around under-stimulated and that makes them deteriorate further.”
For Claridge, adapting classic books and stories to make them dementia-friendly presented some unexpected challenges. Initially, she assumed the language would need to be simple, as it is in text developed for non-English speakers. But it soon became clear that people found her first adaptation of A Christmas Carol too simple, and she reinstated a lot of the original language. She has also retained as much of the original language as possible in the other adaptations.
“We realised after the pilot that, even if they don’t necessarily remember what they have read, people who are still capable of reading and talking about it in groups are very articulate and have excellent vocabularies. It was clear the form and rhythm of the original Dickens was what appealed to them.”