A Report on two ‘Pictures to Share' Pilot Partnership Projects
July 2009 - February 2010
"Who would think that a few books
with pictures in would make such a difference?"
- Kerry
French, Day Centres Co-ordinator for Leonard Cheshire Disability.
The expected rise in dementia amongst the ageing ‘baby
boomers' generation is receiving almost daily media coverage at the moment. It
has now become a priority for local authorities and care organisations to plan
how best to support older people in their area.
Background
The Department of Health published the first ever National Dementia Strategy on 3
February 2009, backed by £150 million over the first two years. The Strategy indicates that
dementia presents a huge challenge to society, both now and increasingly in the
future. It was estimated that approximately 700,000 people in England are
living with dementia.
The
document aims to "transform the quality of dementia care. It will
"increase awareness of dementia, ensure early diagnosis and intervention and
radically improve the quality of care that people with the condition receive.
Proposals include the introduction of a dementia specialist into every general
hospital and care home and for mental health teams to assess people with
dementia."
This strategy document was followed by ‘Living Well with Dementia: A National Dementia Strategy -
Implementation Plan' published by the Department of Health on 22 July 2009.
Recommendations include dementia specialists in hospitals and working in the
community.
Local authorities are encouraged to work in partnership with
other local organisations to deliver results aimed at improving the care of and
quality of life for dementia sufferers. The Care Quality Commission will use
the annual performance assessment to measure how local authorities meet the
strategic policy directives.
New prevalence statistics were released on 3 February 2010 with the
publication of the report, 'Dementia
2010', commissioned by the Alzheimer's Research Trust from the University
of Oxford. This revealed that previous estimates were too low and there are now
820,000 people in the UK with dementia. The Alzheimer's Society has commented
‘A year on from the National Dementia Strategy for England, this research is a
timely reminder of the colossal dementia challenge facing the country. We can
no longer afford for dementia to be the poor relation when it comes to health
issues.'
Last summer Oxfordshire Library Service found out about
Pictures to Share books and decided to trial them with some of our partners in
day centres and care homes that have clients with dementia.
‘Pictures to Share'
Pictures to Share is a publishing company set up by Helen
Bate, an architect and illustrator, as a community interest company with
finance from various charitable trusts. To date she has published a series of
10 high quality hardback picture books that are aimed at helping people with
dementia, by encouraging them to talk about their long term memories that the
books evoke. The books comprise a mix of photographs, artwork with accompanying
short text in several font sizes. They are the first of their kind - picture
books designed specifically for adults with dementia.
The theory behind these books was outlined in an article in The
Guardian on 20 January 2010, ‘Books stimulate pictures of health for dementia
sufferers'. In it Helen Bate explained "I did a lot of research, with the help
of a company called Innovations in Dementia, and discovered that 95% of images
are not suitable. Each picture needs clarity so that it immediately engages the
viewer. Also, there has to be some narrative to stimulate conversation. And you
can't have too much going on. I remember a woman becoming quite upset by pictures
of children around an ice-cream van because she couldn't tell which grasping
hand belonged to which child. But people with dementia can appreciate a wide
range of images because they come from a wide range of backgrounds."
Purpose of the Pilot
Project
The purpose of the pilot project was to assess the
usefulness of the books with their target readership, and to collect data to
help the library service to decide how we can best make the books available in
order to get maximum use from them. This information could then inform the
decision whether we should buy more copies of the books.
Working with partners in adult social care, we also aimed to
investigate how these resources can be best used to help the quality of life of
older people in Oxfordshire who have dementia.
It was agreed between the Reading and Lending Team and the
Communities and Learning Team that while the books were thought to be
worthwhile, we could not see an easy way of locating copies amongst our
existing book stock on library shelves so that the target readership and their
carers would be able to find them.
The first pilot project partner was the new Elms Day Centre,
just re-opening in its new purpose-built accommodation in Witney. I was invited
to meet Kerry French, the co-ordinator for five of the Leonard Cheshire Disability
day centres in Oxfordshire including The Elms, by Brian Conroy of the Community
Development Team. Having talked with her, I felt it would be worth asking if
she would be willing to test the books with clients who have dementia. She was immediately
very enthusiastic to try something new with a group of clients that her staff knew
from experience were often found difficult to engage in activities, and also
often difficult to get to socialise.
The second project partner to emerge was the Banbury Day
Centre, with whom we had existing links through their deposit collection from
Banbury Library. Hilary Wheelton and I had already visited the Centre to talk
with clients about the library service. The manager, Sally Marchant, was very
enthusiastic to try Pictures to Share books with a group of her clients with
dementia that spent a day each week at the Centre.
Preparation for the
projects
One copy of each of the seven Pictures to Share titles that
were then available was purchased from the Reading & Lending team budget:
Childhood, A Funny Old World, The Countryside, Beside the Seaside, Women's
Work, In the Garden, A Sporting Life, at a total cost of £112.50.
I assembled a pack with guidelines from the publisher's website
to help the staff at the day centres make the most of the books, plus a review
from the Daily Mail, and copies of an evaluation form for each book so that
staff could record their own comments as well as what their clients said about
each book.
In my notes I particularly requested that staff should try
to record the actual words spoken in comment by clients rather than summarising
or paraphrasing them, as we particularly wanted to gather individual comments.
However, the state of health of the client group meant that this was rather
difficult for staff to do consistently as it necessitated writing things down
while still engaging with the client, whose attention was easily lost.
Following the project, it was arranged to have a feedback
meeting to discuss the outcomes as well as collect the feedback forms.
The Elms project
The project at The Elms ran from 8 July to 15 September 2009
with the first seven titles and was managed by Sue Cartner, a Support Worker at
The Elms, with guidance from Kerry French, their Co-ordinator. I had a follow
up meeting on 30 September with Sue and Kerry. They had gathered 29 feedback
sheets from the reading sessions with clients, filled in by staff.
There were many anecdotes and comments from the sessions-
see Appendix for transcripts. Sue said that the books were "very good with
beautiful pictures", and were loved mainly because of the pictures rather than
the words, as it was the pictures that sparked a reaction. "They opened doors
in people's minds", and enabled her to engage with individuals who were sometimes
hard to reach.
‘In The Garden'. ‘Funny Old World', ‘Childhood', and 'Beside
the Seaside' were the most popular titles, the latter provoked memories of
Sunday School trips to the seaside and got people singing the songs they had
sung on the coach home. Pictures of the war time and fashions, such as women in
their summer dresses, got people talking about what they remembered wearing in
the 40s and 50s. One lady loved anything in the books relating to babies.
One man, who generally wanders about and is difficult to
engage in conversation because of his short concentration span, spent a long
time sitting down looking at a book with Sue one afternoon. One lady "got very excited, bubbling over" when they looked
together at ‘In The Garden'. Her husband had been a gardener on various country
estates and the pictures sparked memories for her.
Kerry said they had used the books for group work as well,
with people with and without dementia, and found this helped conversation to
develop in the group and helped them socialise more easily. In fact, she felt
that the benefits were even greater, using the books with a group as dementia
is isolating. Sitting down and working 1:1 is also isolating for the person
with dementia, whereas in a group, people's common memories can be shared. As
well, the staffing ratio is generally 1:3 so it can be difficult to arrange 1:1
sessions. Sue added that reviving long term memories together in a group is
very beneficial as it helps people share their fear of losing their short term memory.
Most people were happy to look at the books. However, one
lady was resistant to engaging as she had experienced a very unhappy childhood
and did not want to think about her memories. Kerry said that even so it was
good for her mind to be stimulated, and staff chose a different title if one
evoked painful memories.
Both Kerry and Sue felt that the Pictures to Share books
were much better than using children's picture books, as they had in the past.
Many people at the day centre have had professional careers and are well
educated, and staff are mindful of this. These specially designed books are not
patronising or degrading to adults, many of whom had had professional careers
and therefore were intelligent and well-educated, in the way that using children's
books could be.
Kerry said "Although people with dementia may lack the
concentration span required by an ordinary book, the more you can get them
interested in talking and remembering, the more it helps slow down further
mental deterioration. This gives them back some quality of life."
"Who would think that a few books with pictures in would
make such a difference?" Kerry said. "I certainly enjoyed looking at them as
well!" Sue said.
Second Pilot Project
with Banbury Day Centre
I took our seven Pictures to Share books to Banbury Day
Centre for their project from 28 September 2009 to 8 January 2010. Then in late
2009 Pictures to Share published three further titles: Travelling in Pictures,
Shopping in Pictures, and Pets in Pictures. A copy of each was ordered at a cost
of £52.50, bringing the set to ten titles, at a total cost of £165.00. Once
they were in stock, they joined the original titles at Banbury Day Centre.
In her feedback notes, Sally Marchant said she "realised the
importance of creating a quiet supportive environment that was person-centred,
and not to rush through the books but use comments, questioning, observation of
body language and the carers' intuition and experience to generate
conversation."
‘In the Garden' succeeded in calming an agitated client by
distracting him with the beautiful pictures of gardens in flower.
The humour in the books really seems to chime with the
readers. In ‘Funny Old World' the winkle-picker shoes as well as the photos of
George Formby and Eric & Ernie caused a lot of laughter. Nostalgia for how
things used to be is the common theme running through the books, and for most
people remembering their youth and the past brings back happy memories.
Staff were sometimes able to learn facts about their clients'
lives and families that they did not know before, through conversations
generated by the pictures and words, for example ‘Women's Work'. This helped
staff understand their clients and their interests better, and brought them
into a closer relationship.
One client felt that his knowledge of sport was still
useful, following time spent looking at ‘A Sporting Life' with his carer, and
that made him feel valued.
‘Shopping' made one lady regretful that she could not get
out any more, and another was a little upset by the picture of a snake in
‘Pets'. Only one client was reluctant to think about her past at all.
We had no feedback forms returned about ‘Travelling' as for
some reason no one chose this title during the Banbury project. However, without
exception the books end on a cheerful note, creating a feeling of well being that
the reader can take away from the experience.
The most popular title with clients at the Banbury Day
Centre was ‘Beside the Seaside', which staff said worked equally well with individuals
and with groups. One individual was initially feeling a little low but looking
at the book cheered him up. Two groups, one of four and the other of five
people, looked at it and both groups ended up having a real sing song together!
This sort of interaction is very hard to achieve with dementia sufferers in a
day centre setting, both Kerry and Sally have said.
Sally Marchant would have liked their loan period to be
extended, or to be able to borrow the set of books again at a later date.
"Some of the books were trialled with individual clients and
some with a small group of clients. In particular it would be interesting to
trial it with our (new) Friday group who are jointly cared for by us and the
mental health team. OBMH provide us with an occupational therapist. One of our
carers, who has a dementia qualification, jointly manages the group, which
consists of some clients with moderate dementia but who still love to reminisce
and talk about the past, as we have in the past done some life history work
with them."
It would be good to be in a position to have another set of
books to offer them.
Green Gates
After the Banbury project, the 10 books were loaned to Green
Gates, a BUPA nursing home in Summertown, Oxford from 1 February to 8 March for
a further partnership project. There is a dementia group there too, and
feedback forms will be completed as before.
This project is shorter because the Communities and Learning
Team want to take the books to put on display at the conference ‘Improving the
mental well-being of people living in Oxfordshire: knowledge for practice' to
be held at Unipart House on 11 March.
Conclusions
This pilot project has shown that using the Pictures to
Share books in a targeted way with individuals and groups of people with
dementia is effective in bringing enhanced enjoyment of books, improved quality
of life in a day centre setting, and instilling a greater feeling of well-being
in the target group. It shows they are an effective, cheap and useful resource
for staff and carers in helping them to manage people with dementia and enrich
their lives.
Where do we go from
here?
Buy more copies
It was agreed at the Principal Librarians' meeting in
February that we should buy two further sets of books, so that we can offer
them to more day centres and homes. There is currently a waiting list of four
institutions waiting to try them, and we shall have no difficulty finding
others who would like to join in.
The new sets have now arrived at Holton and will shortly be
loaned to the next two organisations on our list. In addition we have bought
copies of Helen Bate's booklet ‘Book therapy for dementia sufferers' to loan
with the collections, and a copy for the staff library.
Workshops?
At our feedback meeting in September Kerry French pointed
out the potential benefit of running group workshops using the books. She
kindly offered to make a room available at The Elms for group work, for example
with some people from Homes or people in the community who receive care at home
from a carer.
Community Transport or volunteers could bring people on a
pre-arranged day.
We envisaged the sessions being run in two rooms at The
Elms. In one room carers could be offered tea or coffee and an informal social
time, during which they could chat to representatives from supportive
organisations such as CAB, social workers, the fire service and the library
service, talking about our Home Library Service and online resources, while the
person they care for takes part in a workshop group using Pictures to Share
books.
Kerry French suggested investigating whether we could get
funding through a Community Grant so that The Elms could staff such a workshop
project. This needs to be discussed with Brian Conroy of the Community
Development Team. If funding can be obtained, she would like Sue to run the
workshops as she brings so much to her interaction with people at the day
centre and has the right skills. This year's Carers' Week is 14-20 June, and it
would be good to offer a workshop then if possible.
Benefit to Carers
A series of workshops would encourage people with dementia
to get together, and if their carers came with them, it would be a valuable social
opportunity for them too, helping to overcome some of their isolation. Carers
could share their experiences and knowledge together over a relaxing coffee,
and it would be an opportunity to bring in people from organisations such as
the library service, the Citizen's Advice Bureau, Adult Social Care, the CDT or
the Carers' Centre to give them information about their services, for example,
telling them that help is available with form filling.
Sources
The National Dementia Strategy. Department of Health, 3
February 2009.
‘Living Well with Dementia: A National Dementia Strategy -
Implementation Plan'. Department of Health, 22 July 2009. www.dh.gov.uk
‘Dementia 2010', University of Oxford for the Alzheimer's
Research Trust,
3 February 2010. www.dementia2010.org
Newspaper articles about Pictures to Share books:
The Daily Mail, 31 March 2009, review of the books by Ruth
Langsford, TV presenter.The Guardian, 20 January 2010. Article by Chris Arnot,
‘Books stimulate pictures of health for dementia sufferers'.
‘Pictures to Share' publisher's website and catalogue www.picturestoshare.co.uk
www.innovationsindementia.org.uk
Appendix 1: Responses on the evaluation forms from The ElmsAppendix 2: Responses on the evaluation forms from Banbury
Day Centre
Appendix 3: Observation notes on a student engaging in one
to one activity with a client as part of the Pictures to Share project at
Banbury Day Centre.
Appendix 4: Instructions on Pictures to Share Pilot Project
Appendix 5: Pictures to Share Pilot Project Feedback form
Anney Blake
Librarian, Communities & Learning Team,
Oxfordshire County Council Library Service
19 February 2010
If you would like to know more about our books or the use of our books in libraries please email michelle@picturestoshare.co.uk