Dr Sally Rimkeit (a psychogeriatrician) and Dr Gillian Claridge (an applied linguist) discuss the research that led them to develop the Dovetale Press books – a series of classic tales that have been adapted specifically for people with dementia, produced with the support of Bupa.
There are currently over 55 million people in the world today estimated to be living with dementia. Reading is one of our most popular pastimes (Holden, 2004) – including for the 55 million people in the world living with dementia. While those with dementia have difficulty attending to and retaining information from books, there is research to suggest that reading may improve quality of life and cognition for the elderly (Latchem & Greenhalgh, 2014).
Yet, despite the potential benefits reading may have for people living with dementia, there is very little data on how people with dementia experience it. Unfortunately, the lack of research into the subject has led relatives and carers of people living with dementia to assume they can no longer read, and either provide them with children’s books or no books at all. Yet, this thinking is unfounded: while people with dementia may not retain the information the have read, they still very much enjoy it.
This thinking lead us to conduct a study in 2015, investigating whether people living with dementia (who had enjoyed reading pre-diagnosis) could still enjoy reading and discussing classic literature.
Thanks to Dr Sally Rimkeit and Dr Gillian Claridge, we have a full collection of these Dovetale Press books to giveaway. The series includes:
- Sherlock Holmes: The Adventure of the Blue Carbuncle, Arthur Conan Doyle
- Poetry for the Restless Heart; a selection of poems
- The Garden Party and the Doll’s House, Katherine Mansfield
- Little Women, Louisa May Alcott
- A Christmas Carol, Charles Dickens
Just email firstname.lastname@example.org with your name and you’re in the draw. Don’t forget to include ‘Dovetale Press’ in your subject line. Get your entries in by Monday 8 November. Good luck!
Step 1: The Feasibility Study
This was approved in 2015 by HDEC with 7 participants, with the aim of testing the proposed reading material and the capability of the participants to take part in an hourlong discussion comparing three different versions of a text. The text selected was A Christmas Carol by Charles Dickens, because it is out of copyright, relatively short, and a heart-warming tale, likely to be familiar to the participants. Participants were given the original version in large print, a beautifully illustrated version with simplified lexis and syntax adapted by the researchers, and a children’s version. These were discussed in two focus groups facilitated by the researchers. The adapted version was kindly funded by Ryman Care Homes.
The findings were surprising. The participants dismissed the children’s version as being ‘childish’ and infantilising. They liked the adapted version because of the beautiful illustrations, and easy-to-read format, but said it was too simple and lost the voice of Dickens. But the version they preferred was the original version, although it had no illustrations, because of its rich language which stimulated discussion, memories, and laughter.
As a result of these findings, we went back to the drawing board and produced a second version of A Christmas Carol. The word count was reduced by 90%, but the words that remained were the original words of Dickens. Each double page was designed to be an entity, so that if a reader had forgotten what happened on the previous page, they could still enjoy the page they were reading. We then created versions of two Katherine Mansfield short stories, a Sherlock Holmes story and a version of Little Women adapted in a similar way. In addition, we assembled a collection of poetry which was not shortened but chosen for its brevity and clarity.
Step 2: The Pilot Study
Using the five books described above as reading material, we designed a pilot study to investigate whether reading classic literature in book groups improves the quality of life of people living with dementia, approved by HDEC. With the support of BUPA, residents from two care homes in New Zealand were invited to participate. Six participants in each care home met twice weekly for seven weeks with a trained facilitator from the home and discussed the books. In each care home, there was also a control group of six participants. The primary assessment measure was the Resident QoL-AD (Quality of Life in Alzheimer’s Disease) – a 15 item questionnaire which the researchers went through with individual participants and the control groups before and after the book groups were run. There were also four secondary assessment measures.
The data collected shows differences in all outcome variables when the book group participants are compared with the control groups. Those in the book groups showed a mean improvement in all five tests. The small size of the study means that the researchers were not able to find a significant statistical difference between the two groups, but they were able to calculate the numbers needed to fully power the next step: a robust Randomized Controlled Trial.
Step 3: The Randomized Controlled Trial (RCT)
The findings from steps 1 and 2 have informed the design of an international RCT, approved by HDEC, using the same assessment measures as the Pilot. Care homes in New Zealand and Australia have already collected the data. Due to the problems caused by Covid-19 we are waiting for data collection from the UK, in the hope that this will still be possible.