Books for Dementia-friendly Libraries

Dovetale Press want to give people living with dementia the pleasure of sharing a great read at the public library, improving social connection and confidence. If successful, their kickstarter campaign will provide six sets of five Dovetale Press dementia-friendly books to 20 New Zealand public libraries. That’s 600 books in all, or a set of books for shared reading in a group of six people at 20 public libraries across New Zealand. If pledging meets 200% success, then 40 libraries will benefit with 1200 books shared in groups, and so forth. Participating libraries also receive a digital resource with suggestions on how to run a dementia-friendly book group. The Dovetale Press series has been produced after years of research into reading and dementia, through the University of Otago and with support from Bupa NZ.

Every three seconds, someone in the world develops dementia. Alzheimers New Zealand estimates that 80% of New Zealanders are affected by dementia in some way, and that by 2050, more than 170,000 Kiwis will be living with dementia. The Alzheimers NZ Dementia Declaration states: ‘Our Lives Matter. We ALL want to be seen, valued, appreciated and loved for who we are.’

Despite strong efforts to reduce the stigma around dementia, many people still encounter misunderstanding, disrespect and dismissal because of their condition. They may even be treated as children, considered unable to make any decisions for themselves. Philip has been one of these people. Philip is a New Zealander living with dementia, and sometimes he feels that he is excluded from life as he used to know it. People often think that he is incapable of pursuing ordinary hobbies, such as reading. But the reality is quite different. Since he joined a book group at his local library, specially set up for people living with dementia, Philip has found that reading is not just a pastime but a lifeline. Through sharing discussions evoked by reading adapted literary classics such as the stories of Charles Dickens or Katherine Mansfield, he’s been able to talk about incidents buried in his own past, as well as articulating interesting ideas arising from the story. He considers that the book group has helped him to become much more confident and open in his connection with others. He even feels that his memory has improved. His friends and relatives have noticed this too.

Where did Philip’s adapted books come from? Well, in order to support people like Philip, in 2015, we, Gill and Sally, joined skills as a psychogeriatrician and an applied linguist to set up Dovetale Press to adapt classical literature for people living with dementia and other disabilities. With the generous help of grants from Bupa Care and Ryman, we were able to publish adaptations of four novels and a collection of poetry. The Dovetale Press series includes adaptations of:

■ Christmas Carol, Charles Dickens

■ Little Women, Louisa May Alcott

■ Sherlock Holmes: The Adventure of the Blue Carbuncle, Arthur Conan Doyle

■ The Garden Party & The Doll’s House, Katherine Mansfield and

■ Poetry for the Restless Heart, editors’ selection

While Philip’s lived experience of participating in his book club is striking, he is not alone. Dementia Auckland was approached by the Takapuna Library to help them develop a book group for people living

with any cognitive impairment, including dementia. Brenda, the Dementia Key Worker for that area of Auckland, immediately set out to gather lovers of books who are also living with dementia. Through cooperation between the two organizations, the Takapuna Library now has a thriving book group that is open to all.

Dementia Auckland GM of Operations, Barbara Fox, deeply believes that reconnecting people living with dementia with their beloved books in their own community library will motivate people to build connections that will flourish as the numbers of people living with dementia increases. Barbara states ‘Libraries are the centers of our communities, and books that are accessible to people living with dementia deepens that sense of community. I encourage all libraries to reach out to the dementia provider in their area for education and support to build these book groups across New Zealand.’

People living with dementia may have difficulties reading standard texts because of problems with memory, which can be particularly frustrating if reading was a favourite pastime for them. Specific challenges that they face in reading are daunting amounts of text, fonts which are too small or not distinct enough, insufficient white space on a page, and difficulty in following the thread of a plot. It can be challenging to understand a story if sentences are very long, if there is a lot of descriptive ‘padding,’ or if pronouns are separated from the nouns to which they refer by a lengthy sentence or a page turn.

However, Dovetale Press holds the philosophy that people living with dementia do not need to be deprived of the joy of reading simply because they can no longer tackle standard books. Making New Zealand libraries more dementia-friendly is also a focus for local Alzheimers and Dementia organisations across the country, who are coordinating programmes to make these spaces as accessible as possible for people living with dementia.

In the Dovetale Press series, we have addressed these challenges for readers with memory impairment. We have created versions of the classics in which text not essential to the stories has been removed, shortening them considerably and clarifying the plot. The books are lighter than standard novels and thus easier to hold. The referents in the stories have been made very clear, and the pages are designed so that each double page can be read as a single entity, which means that if a person cannot remember what happened on the previous pages, the reading can still be a pleasurable experience. In order to prompt imperfect memories, there are ‘cast lists’ for each novel, and where appropriate a summary is provided after each chapter.

Although parts of the texts have been cut, this has in no way dumbed down the rich, vibrant language of the novels, and they retain as far as possible the authors’ original language. The poems in the poetry collection are not adapted, but have been selected from poetry likely to be known to the intended audience, or to appeal to them. All the books are enhanced by beautiful illustrations, some of which were included in the original publications. Each book is 64 pages, with large print and white contrast paper.

Using the Dovetale Press series, we have initiated an international study on dementia-friendly book groups in collaboration with Bupa Care and the Universities of Otago (Wellington), La Trobe (Melbourne) and Liverpool (UK). Dementia-friendly book groups using the Dovetale Press series are being set up in communities globally, and there have been many positive reports, like the account of Philip.

On October 1st Dovetale Press is launching a kickstarter campaign to strengthen New Zealand’s dementia-friendly stance using an exciting new initiative: by creating dementiafriendly book groups at public libraries throughout New Zealand. We are working hand in hand with LIANZA, Alzheimers NZ and Dementia NZ and local associations, to ensure that when the book groups are set up, community support is offered to ensure success for the readers with dementia.

Our goal is to bring back the joy of reading to those who, because of dementia and its stigma, have been deprived of a good read. Our Kickstarter campaign promises, if it reaches its target goal, to supply 20 libraries in New Zealand each with 6 sets of 5 beautifully produced and illustrated books, to support communities in setting up their own book groups for people living with dementia. That’s 600 books given to NZ libraries in all. If the campaign reaches 200% of the target goal, then 1200 books will be given away. The campaign also allows other public libraries and NGOS to access a set of books, for setting up a book group, at a subsidized cost.

If the kickstarter campaign is successful, the books will be in libraries by Christmas. People like Philip, living with dementia, will get pleasure out of joining a shared reading group, and because

the best possible outcome.

ABOUT THE EDITORS OF DOVETALE PRESS:

Gill currently lectures part-time in TESOL (Teaching English to Speakers of Other Languages) at a tertiary institute in New Zealand, where her research focus is on reading. She has taught and learned languages for many years, and is an IELTS examiner, an APTIS examiner and also a moderator for Trinity College London’s Certificate of TESOL qualification.

She has a Masters degree in Russian Language and Literature from St Andrews University, Scotland, a post-graduate Certificate of Education specializing in language teaching from St Martin’s College, Lancaster, UK, and a Doctorate in Applied Linguistics from the Victoria University of Wellington, New Zealand, where she won the Victoria University English Speaking Union Award in 2011. She spent 5 years as a Dean of the Faculty of International Studies at the International Pacific College in Palmerston North, New Zealand, before retiring from that post to spend more time with her grand-children, and on her work with Sally, producing books adapted for people living with dementia.

Sally is a Consultant Old Age Psychiatrist working at the Mental Health of Older Persons Service (MHSOP) at Capital and Coast District Health Board. She is a co-convenor of the Stage 1 Psychiatric Training Programme for the Royal Australian and New Zealand College of Psychiatrists (RANZCP), through University of Otago, Wellington campus. As a Senior Research Fellow, she is clinical lead for an international programme on the value of facilitated book groups for people living with dementia. She and linguist Dr Gillian Claridge have published five dementiafriendly books, adapted from classic literature for use in this programme and for individual sale. After completing a qualitative study on how people living with younger onset dementia view facing aged care, she is the founding Board Member of the Younger Onset Dementia Australasian Trust (YODAT), a charitable trust developing age appropriate services for people living with younger onset dementia. She contributed to a late-life suicide research project, through University of Auckland, with results published with merit in the International Psychogeriatric Association Journal. She too enjoys family and grandchildren, who live near her in the Wellington area.