On World Alzheimer’s Day we look at the impact Shared Reading can have on the quality of life for those living with dementia in the UK.
On World Alzheimer’s Day we look at the impact Shared Reading can have on the quality of life for those living with dementia in the UK.
Turning the spotlight on our Shared Reading project in Knowsley.
This week’s Featured Poem comes from one of our groups within our Big Lottery funded Merseyside Volunteer Reader Scheme project, where our Volunteer Assistants and our dedicated volunteers read in care homes to people living with dementia. So far, we have trained and support over 300 volunteers to deliver one-on-one shared reading sessions in care homes across the North West and many more around the UK, and the impacts of the poetry that is shared are often deeply profound – as highlighted at our 2015 AGM, which took place at Calderstones Mansion last night. One of the most moving testimonies came from one of our Merseyside Big Lottery project volunteers, who spoke of how reading poetry ‘goes straight to the heart’ and calls to the emotion of people living with dementia – something that is not lost regardless of the severity of the condition.
The group leader of this particular session takes us through the reading of Blue Remembered Hills by A.E. Housman:
The group were drawn to the rich phrases ‘the land of lost content’ and ‘happy highways’ and I was able to ‘stay in’ by repeating those lines in a puzzling tone in any ‘gaps’. Some prompts I used were ‘I wonder about “The land of lost content”…’can anyone shine any light on that line? And ‘I wonder what the “happy highways” could be?’ Also ‘can we imagine who might be speaking in this poem?’ I trusted the poem was doing its work in silences, and worked through each line and phrase in turn.
One member related the poem powerfully to her experience of being a child in the war, being taken away to ‘the farms’, the ‘happy highways’ were the times before the war and the ‘land of lost content’ after the war. This got the group reflecting in a deep way on the role and importance of remembering things. K’s response was nuanced about childhood – ‘it wasn’t always happy!’ – which lead us to explore ideas about our own childhood, was it always happy?
And what are we left with at the end of the poem ‘And cannot come again’ I wonder why?…
Blue Remembered Hills
Into my heart an air that kills
From yon far country blows:
What are those blue remembered hills,
What spires, what farms are those?
That is the land of lost content,
I see it shining plain,
The happy highways where I went
And cannot come again.
The Reader’s volunteer-led projects in Barnet, North London were our first outside of our base in Merseyside and since their start in 2011 they’ve gone from strength to strength, engaging local people in the pleasure – and often, the power – that comes from shared reading.
Our Barnet volunteer projects focus on reading with community groups, memory loss groups and within care and day centre settings for people living with dementia and their carers. We’re working with Jewish Care, Altogether Better and Comic Relief to enable volunteers to receive training and ongoing support to lead groups in pairs, sustaining the shared reading experience for those who we already read with and bringing it to many more people.
Our volunteers in Barnet are from all walks of life and backgrounds – some have joined us after long careers in healthcare and related settings, some have previous experience with sharing reading. Others have experienced the impacts great literature has had on people they are close to, or just simply have a passion for reading that they want to pass onto others.
Jennifer began her volunteering journey with us after regularly attending a shared reading group with her grandmother. She took part in training and went onto run her own group at the care home she worked at. Her story shows how choosing to volunteer can make a change not only to the lives of those who read, but to volunteers themselves:
“I left school with very poor qualifications, but by having the experience of facilitating in shared reading I was led to a more formal course of learning and have since been able to enrol in a course for serious readers, the Reading in Practice MA. I never imagined I would be working towards earning a degree in my whole life so that is a big surprise and benefit for me. It gave me the confidence to leave full-time employment and ask to be a fully-fledged volunteer shared reading facilitator in a community group at Burnt Oak Library. This is good as I have read a lot more short stories and now we are reading a novel together.
You don’t have to have an English degree or any qualifications to be a shared reading facilitator. You just have to be willing to learn a new craft, and be available once a week, ongoing. You equally share the responsibility of running the group with another shared reading facilitator. There is also the support of a network of other volunteers who are all on the journey of becoming shared reading facilitators. Even the best are still learning. You don’t even have to know that much about poems or books.
From admittedly not having a scrap of appreciation for poetry and an increasing sense of shame for not reading very much at all, I have developed a love for poetry and a desire to read. I can’t wait each week to listen to people reading. It is such a rare thing. I feel I have definitely gained more confidence in public speaking. I have far better conversational skills and am able to quote poems, which makes me sound like I have been reading poetry all my life! It makes me feel really clever. Everyone involved is warm and friendly and it is such a meaningful thing to do.
Side effects of volunteering for The Reader: One day down the line, you may have to buy a bookshelf. It might make you visit the library (or even apply for a library card!). You may read that book you have been ignoring for ages. You may develop a love of poetry. You can talk to others about books and poems without any snobbery or pretence. You may make friends. You may want to run more groups. You may be really surprised at what reading together can create. You will definitely enjoy it.”
We are now recruiting for more volunteers to join us in Barnet on our Jewish Care, Altogether Better (reading with community groups/community memory loss groups) and Comic Relief (reading with people living with dementia and their carers) projects. Volunteers will be paired to run shared reading groups, with full training and ongoing support from The Reader.
This week, we’re sharing a poem recently read with some of our reading groups for people living with dementia – a selection by the American poet Sara Teasdale. One of our group leaders explains how it has evoked some mixed emotions:
“Initially there has been a negative feeling from the first reading of the poem, particularly the line ‘If mankind perish utterly’. Once we’ve read it a few times and reflected further, the responses of the group members seem to change and become more appreciative and less negative; although the sense of sadness remains, it is perhaps less singular – other things are alongside it, not just sadness once we’ve talked about it.”
There Will Come Soft Rains
There will come soft rains and the smell of the ground,
And swallows circling with their shimmering sound;
And frogs in the pools singing at night,
And wild plum trees in tremulous white,
Robins will wear their feathery fire
Whistling their whims on a low fence-wire;
And not one will know of the war, not one
Will care at last when it is done.
Not one would mind, neither bird nor tree
If mankind perished utterly;
And Spring herself, when she woke at dawn,
Would scarcely know that we were gone.
Professor Philip Davis, Director of the Centre for Research into Reading, Literature and Society (CRILS) at University of Liverpool, will appear at Age UK’s For Later Life 2015 Conference this November showcasing the latest research on the relationship between literature, shared reading and dementia.
The theme for this year’s For Later Life conference is brain ageing and dementia, and will consider how health and care services can best help older people in an increasingly ageing society to live as well as possible with cognitive decline, in many cases alongside other health conditions.
CRILS is the research partner of The Reader Organisation and most recently published Read to Care, a report evaluating the impacts of engaging with literature, specifically the shared reading model introduced by The Reader Organisation, amongst people living with dementia. We have been reading in dementia settings since 2006, with the model adapted to make the reading experience more easily accessible and meaningful for group members involved. Examining how shared reading can contribute to an improvement in quality of life for people living with dementia, Read to Care places particular consideration on the impacts of reading poetry in shared reading groups upon mental processes including memory, emotion and personal awareness.
Amongst other findings, Read to Care highlights the connection between literature and memory for those with dementia, whereby poetry that is read acts as a ‘trigger’ to bring participants back to life for the moment they are experiencing, as well as recalling moments from their past. This is evidenced by group members taking part in the study, including Polly, whose story is recounted by the reading group leader:
Polly sometimes struggled to focus on the words on the page but would often comment on the difference that it made when she heard a poem read well. On another occasion Polly responded to certain lines as others were reading the poems, and would comment in sudden little phrases: ‘Oh isn’t that lovely!’
I asked her a question a bit later and she seemed slightly startled, as if she had been thinking. She then said: ‘Do you know what I think. When you’re young, why do you grow up?’ This felt like a very good question to be asking: perhaps somewhat in the spirit of a child, but from an adult’s perspective. The losses in dementia are often like the gains in development when, in the child, they come and go because not yet firmly established as acquired skills. Polly started to speak towards the end of the session of several childhood memories. She spoke of her father, who I had not heard her mention before. He had had a stroke when she was still only young, and Polly said that she couldn’t understand, as a child, why he couldn’t speak. She said there were times when she did not know where he was; she seemed to imply that it felt as if he was not there.
Professor Davis will discuss the relationship between shared reading and dementia and present findings from Read to Care in ‘The arts: case studies in dementia care’ as part of For Later Life 2015 on Wednesday 18th November at BMA House, London. The conference will showcase new approaches in the prevention and treatment of age-related cognitive impairment, innovative policy proposals and promising practice ideas, and the latest research findings.
Places registered before 23rd September 2015 benefit from reduced rates. For more information about the For Later Life Conference, see the Age UK website: www.ageuk.org.uk/forlaterlife or download the conference brochure.
For more about Read to Care and research into shared reading, visit http://www.thereader.org.uk/what-we-do-and-why/research
“Discovering new literature or re-connecting with familiar material is very enjoyable for the volunteer as well as those in your groups and meeting like-minded fellow volunteers is a real bonus” – Helen Deal, volunteer facilitator, Barnet
“I am always more energised at the end of the sessions that we run and am always glad that I went. Even on those rare Tuesday mornings when I may not feel like going to the group and may have to make myself go – I never regret it!” – Vivian Wood, volunteer facilitator, Barnet
Volunteer Week 2015 continues, and today we’re visiting our volunteers in London where we’ve been running our volunteer-led project since 2011. In Barnet, our volunteers facilitate shared reading groups and one-on-one sessions with people living with dementia and their carers, as well as reading with whole population groups in care homes, day centres, community centres and libraries across the borough. Our ever-expanding team of volunteers work individually and in pairs to lead groups, bringing the stimulating, imaginative and enjoyable experiences that come from literature back into the lives of people with conditions that may be considered limiting.
Week on week the groups can prove insightful and challenging in different ways, yet our Barnet volunteers find numerous highlights which are not only testament to the power of reading but also how rewarding volunteering in these settings can be:
“Only a couple of members in my advanced dementia group are able to join in and read coherently, but I like that other individuals are clearly able to follow the poems and seem attentive to the words and the sounds of them. One of the members in particular, ‘Margaret’, has a real air of anticipation at the beginning of each session and is always very focused on those reading. Her eyes are very expressive and when we have prompted her she has managed some appropriate responses: after a poem about sisters she volunteered her sister’s name – ‘Winfred; younger but taller’ – and some poems about friendship lead to another more vocal member of the group, Cecilia, befriending Margaret, taking her hand, asking her to smile, telling her ‘you are a very lucky woman, because so many people love you’. It was very heart-warming and suggests that although most of these group members now have very limited speech, there is still a lot going on inside.” – Helen Deal
“I am still surprised at how beautifully many residents read who may not otherwise be very articulate, pulling out so much meaning and so many feelings from the words. A lady who I thought might have nodded off whilst we were reading The Jabberwocky and were discussing what the creatures might look like, rose from her recumbent position to say, ‘he must be a chatterbox, you know, jabber, jabber…’ and then she seemed to fall back to sleep, rather like the dormouse in Alice in Wonderland. Another time a man remarked how in The Magpies by Denis Glover the lines that told the sad story of the couple lay right alongside the funny, crazy noises of the magpies, ‘just like life’. Or the day when after reading three poems about birds a woman said, ‘I hate caged wild birds but you have brought three wild birds into the room and we have heard them sing.’ ” – Claire Sive
In time for Volunteers Week, we have a new group led by volunteers starting in Barnet this week, specifically for people with memory loss and their carers. The Feel Better with a Book group runs weekly at Manor Drive Methodist Church Hall, Whetstone on Thursdays, 10-11.30am.
We’re also recruiting for new volunteers to join the project. Applicants will receive training and ongoing support in their role and will be making a long term commitment to The Reader Organisation and their community. We can only offer this advice, direct from one of our current volunteers, if you’re wondering whether it might be for you:
“Join in and be a group member and experience it live. Go with an open mind and open heart. You need to like and be interested in people – forgive them –not everybody is lovable, but everybody has a story.” – Kate Fulton, volunteer facilitator, Barnet
For further information on volunteering in Barnet, please contact Paul Higgins: email@example.com or call 07985 718744
It’s Dementia Awareness Week (17th-23rd May), and this year’s theme is Do Something New, emphasising the fact that dementia needn’t prevent anyone from trying new things or taking enjoyment from the hobbies they already love.
Shared reading is a wonderful way to connect people living with dementia to the deep pleasure literature can provide, stimulating thoughts, feelings, emotion and memory. In our groups specially for people living with dementia and their carers, poems are read by the leading project worker to the group. Often these poems will be ones recalled from childhood or another significant life period. The rhyme, rhythm and compressed language of poetry helps to stimulate and maintain concentration, sparking off traces of memory. As well as remembering their past, group members are encouraged to enjoy the literature for what it is in the present moment. Effects of shared reading in this way include an increased sense of calm, reduced agitation and increased social interaction with others who are enjoying literature in the same way.
The power of poetry to give voice and a space for expression to people living with dementia comes through in Joan’s Story, recounted by one of our project workers sharing reading in a care home in Merseyside:
We were reading Wordsworth’s classic and much-used poem ‘Daffodils’. ‘Did you like it, Joan?’ asked the activities co-ordinator, to which Joan responded, very audibly – ‘Yeah. There’s something about it, I can’t explain.’ This felt like a moment of progress, even though or especially because it was about not being able to explain and also being able to say that. Poetry of course is good at creating that effect for any of us, whatever our supposed mental ability or disability: poetry is, as it were, content with making something become present though not fully explicable. After the group, the activities co-ordinator told me that she had never heard Joan able to string so many words together, let alone read aloud words from a page, and in the right order. Staff at the care home have since told me that Joan has a framed copy of ‘The Daffodils’ up on the wall in her room.
During the session Joan also responded well to the poem ‘Your Dresses’ by Carol Ann Duffy: I worked through each stanza, each separate ‘dress’, of the poem and picked out words or phrases with my finger, asking her questions as we went. She seemed to really enjoy looking at the words in this way, and responded either verbally by saying, ‘Yes, very nice’, or by gesturing as if she was trying on a dress in a window. Joan also began to pick parts of the poem to read on her own, and seemed to be trying to say something about it – that she did like it, but seemed frustrated that she couldn’t wear the dresses, or get inside it in some way. At the end of the session we read ‘Everything Touches’ by Roger McGough, to which she listened intently with a big smile on her face. I could tell she liked the poem, but also that some of it made her quite emotional. She said ‘I’m frightened’ at one point, but when I asked her what of, she changed again and seemed to be smiling and happy, reading the last three stanzas of it aloud on her own. On our way out of the room the staff member who had been in the session commented to me, ‘It is amazing – there is definitely something still there, and the poems really seem to bring it out.’
More evidence of how shared reading can improve the quality of life of people living with dementia can be found in Read to Care, an evaluation report of several shared reading groups across Merseyside compiled by the Centre for Research into Reading, Literature and Society (CRILS) at University of Liverpool, available to download on our website.
We currently run open community groups for people living with dementia and their carers in Devon, Wiltshire, and Barnet, North London. A new weekly group is starting at Manor Drive Methodist Church Hall, Whetstone on Thursdays, from 21st May, 10-11.30am.
A huge congratulations go to The Reader Organisation in the South West, who were winners at the Wiltshire Public Health Awards last night.
Our Wiltshire shared reading project, running in partnership with Wiltshire Libraries, picked up the prize for improved mental health and wellbeing across the area. Running since January 2014, Library Memory Groups bring the shared reading experience to people living with dementia and memory loss on a weekly basis. With poems and short stories that are read aloud, group members are immersed in a calm and relaxed atmosphere, with the texts being read and digested allowing people to piece together collective personal memories related to the stories and poems, which in turn encourages feelings of wellbeing.
Group members and their family members and carers have reported that the weekly sessions have a positive impact on their mood, allowing them to rediscover and enjoy literature with others and giving the opportunity to make new friends and connections within their community.
The project has also involved volunteers to assist in running the groups, allowing it to extend further across the region.
The Wiltshire Public Health Awards, run by Wiltshire Council, recognise individuals, projects and organisations for their contributions to improving the health and wellbeing of people who live and work in Wiltshire in nine different categories, including the mental health award. This year’s awards saw a staggering 120 nominees enter, so the achievement is something we’re especially proud of.
Jennifer McDerra, The Reader Organisation’s Development Manager for Public Health and Dementia, was at the ceremony in Trowbridge to pick up the award on behalf of the team. A special congratulations goes to Wiltshire Project Worker Josephine Corcoran who has done so much to get the project off the ground and maintained its success onto to award-winning status!
You can read more about the Wiltshire project, and the remarkable effects it has had on group members on Josephine’s blog:
A new Library Memory Group will be starting at Salisbury Library in Wiltshire on Thursdays, 11am-12pm, weekly from 23rd April. Other Library Memory Groups in the area currently run in Trowbridge, Warminster and Mere (Wednesdays) and Royal Wootton Bassett and Pewsey (Thursdays). For full details on the groups, visit our website or follow @TheReaderSW on Twitter:
The Centre for Research into Reading, Literature and Society (CRILS) at the University of Liverpool has published ‘Read to Care‘, an evaluation report of a research project investigating the quality of life benefits and impacts for people living with dementia in shared reading activity across Merseyside.
CRILS is a research unit dedicated to investigating the effect of reading serious literature in the wider world, with a view to benefits in health and wellbeing, and is The Reader Organisation’s research partner. In 2012, CRILS evaluated TRO’s shared reading programme for people living with dementia with support from the Headley Trust – ‘A Literature-Based Intervention for Older People Living with Dementia’ showed that shared reading provided marked improvements in agitation levels, mood levels and concentration levels for participants, as well as improved social interaction.
Developing from this, TRO was commissioned by NHS North West to undertake a follow-up study of the effects of shared reading in Care Homes in Wirral. The aim of the project was to further investigate the impact engaging in a shared reading group activity has upon people living with dementia, adding to and supporting a growing body of anecdotal evidence.
In ‘Read to Care’, particular consideration is given to:
The conclusions and recommendations of the report show that shared reading groups significantly improve the quality of life of people living with dementia, as well as providing valuable benefit to care workers and relatives in encouragement of remaining human possibilities.
“Reading aloud when others are there to listen, the sense of being in a unified community, has been the privilege of Poets for millenia. And it works. The words – common to all, unite minds and the shared stimulus appears to have an uplifting group effect.” – Melvyn Bragg (preface to Read to Care)
The report will be the focus of a presentation held at the University of Liverpool this November. Professor Phil Davis, Director of CRILS, will present findings from Read to Care, alongside one of The Reader Organisation’s project workers who was involved in the practical delivery of the groups participating in the project. Anyone interested in dementia and the relationship between literature, health and wellbeing is welcome to discover more.
‘Read to Care: Shared Reading Groups & Quality of Life Benefits for People Living With Dementia’ with Professor Phil Davis is on Thursday 20th November, 6.00pm, at Lecture Theatre 1, Sherrington Building, Ashton Street (off Pembroke Place), University of Liverpool.
Cost: £20, including buffet supper.