Fit as a fiddle with Age UK
London
Dementia legacy resource
pack
This resource pack has been made possible by
the fit as a fiddle programme at Age UK London
Written by Neil Mapes September 2012
fit as a fiddle with Age UK London – Dementia legacy resource pack
Contents
Contents .................................................................................................................................................2
Introduction ............................................................................................................................................3
Fit as a fiddle ..........................................................................................................................................4
Why a dementia legacy? ........................................................................................................................5
Why Dementia and Dementia Friendly Green Spaces? ......................................................................5
Benefits of exercise and nature ............................................................................................................5
Dementia Friendly Green Spaces checklist..........................................................................................7
Risk-Benefit assessment .......................................................................................................................8
Dementia Friendly Training ...................................................................................................................9
References and resources ................................................................................................................. 11
About the Author ................................................................................................................................. 12
Sharing this resource .......................................................................................................................... 12
Dementia Adventure CIC www.dementiaadventure.co.uk info@dementiaadventure.co.uk 01245230661
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fit as a fiddle with Age UK London – Dementia legacy resource pack
Introduction
This resource pack has been developed as part of a suite of dementia specific information developed during
the dementia legacy project with the fit as a fiddle programme with Age UK London. This resource
compliments and should be read alongside the report called “Involving people living with dementia: insights”
This new resource pack aims to:
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Build on the key messages identified in the Insights report
Highlight and share the dementia friendly training trialled as part of this programme
Be a practically useful resource for staff and volunteers working in any health and well-being setting,
with specific information for green space organisations
The Insights report detailed four challenges and five opportunities which arose out of local Age UKs experience
of involving people living with dementia. One of these opportunities identified was:
“For mainstream leisure providers, working in partnership with older people’s organisations and dementia
specific groups to share knowledge, staff and volunteer resources so that a broad range of ‘dementia friendly’
healthy living activities are on offer to people living with dementia at a local level” (Insights report, page 9).
Additionally one of the seven key messages of the Insights report was:
“Organisations that are leading new initiatives and programmes aimed at living healthier lives together must
find ways, through creative partnership working, to include people living with dementia” (Insights report, page
12).
Dementia Adventure has a track record in leading work with green space organisations and supporting people
living with dementia to enjoy time out in nature. After considering how to make the best impact with this
dementia legacy project, particularly with regard to the opportunity and key message above, we decided to
offer the training trial element of this project to green space organisations. Many green space organisations
have historically not actively involved or had much experience in engaging people living with dementia. At the
same time many of the individuals in these organisations are becoming aware of dementia as one of the most
important social and health issues we collectively need to address and have shown interest and a demand for
support in taking action. Therefore, this resource is specifically aimed at supporting and enabling
organisations which own and/or manage our publicly accessible green spaces, but it is envisaged that the
information will also be helpful for a wide range of leisure providers with predominantly indoor facilities like
museums and sports centres. Green space leisure providers in particular have the opportunity to genuinely
open up and offer their beautiful natural resources and support services to a growing community of people
living with dementia. This resource will share some practical ways of involving people living with dementia,
what we mean by dementia friendly green spaces, and the resources which exist right now for a wide range of
organisations who want to do more for people living with dementia.
At Dementia Adventure we have a mission to connect people living with dementia to nature, and we have an
outstanding track record of doing so. This resource combines information from the Dementia Legacy Project
with our own experience and information, and may be taken as an introduction to the work of Dementia
Adventure and the concept of dementia friendly. We know that accessing and enjoying activity in parks,
woodlands, communal green spaces and a range of leisure facilities is very important to people living with
dementia. We also know:
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There are significant physical, emotional and social benefits for people living with dementia sharing
leisure activity together
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Leisure organisations experience a variety of benefits from involving people living with dementia
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Local communities could make better use of local nature spaces and leisure resources
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fit as a fiddle with Age UK London – Dementia legacy resource pack
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Organisations need to work together more effectively
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There are significant barriers which stop people living with dementia accessing and enjoying green
spaces and leisure facilities
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Despite recent national campaigns there remains a lack of awareness and understanding of dementia
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There are simple and effective changes individuals and organisations can make to improve access to
green spaces and leisure facilities for people living with dementia
Fit as a fiddle
From 2008 - 2012, Age UK London delivered fit as a fiddle, as part of a nationwide programme, across various
boroughs of London, supporting people in later life to get and stay healthy, maintain independence, and
improve their quality of life. More information, including a full evaluation of the fit as a fiddle programme can
be found here: http://www.ageuk.org.uk/london/Our-services/Fit-as-a-fiddle/
Dementia Adventure CIC www.dementiaadventure.co.uk info@dementiaadventure.co.uk 01245230661
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fit as a fiddle with Age UK London – Dementia legacy resource pack
Why a dementia legacy?
The dementia legacy project was conceived by staff and trustees at Age UK London. The legacy work
comprises the following three elements, all of which are connected to the national momentum for ‘dementia
friendly communities’:
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A brief summary report called “Involving people living with dementia: insights”
A short training package trialled with leisure providers – specifically with green space organisations
A downloadable resource to support staff and volunteers
Whilst there is a strong bank of evidence on the benefits of dementia friendly design this has principally
concentrated on the physical environment of health and social care settings and on buildings and gardens
specifically designed for the use of people living with dementia. This resource pack concentrates on publicly
accessible, local community green spaces including parks and woodlands that may be publicly, privately or
charitably owned. We are keen to enable and support organisations to ensure that public green spaces are
accessible, inviting, engaging and empowering for people living with dementia yet remain a community
resource for all. The information is also intended to be useful for a wide range of leisure organisations.
Why Dementia and Dementia Friendly Green Spaces?
Dementia is technically a syndrome encompassing a range of degenerative illnesses and diseases of the brain,
of which the most commonly known is Alzheimer’s disease. The numbers of people living and dying with
dementia in the UK is on the increase. The Alzheimer’s Society statistics (Alzheimer’s Society, 2012) on
dementia demonstrate the scale:
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There are 800,000 people with dementia in the UK with numbers set to rise to over 1 million by 2021.
One in three people over 65 will die with dementia
More than 60 per cent of all care home residents, aged over 65, have a form of dementia.
There are over 17,000 people under 65 with dementia in the UK.
Dementia affects 11,000 people from black and minority ethnic groups in the UK.
Whilst we wait and hope for a cure there is much that can be done, right now, to enable the 800,000 people
living with dementia in the UK to live healthier, more active and enjoyable lives. Being out in nature and
sharing activity out in nature is something which brings immediate benefits to people living with dementia and
we believe is a crucial part of ‘living well.’ We also know from the Age UK London work with fit as a fiddle that
sharing activity together which is fun and informal and take places in local community settings is beneficial to
people.
Benefits of exercise and nature
Nature is the original multi-sensory environment, is on our doorstep and is often free to access. There is a
bank of exercise that informs us that activity out in nature is good for well-being, good for all of us (University of
Essex, 2012). There is also a great deal of research work taking place, in the UK and internationally, which is
examining the effects of exercise (and activity outdoors) in preventing the delay of dementia symptoms and the
positive impact this has on cognition and well-being. For example, Dr Kirk Erickson and colleagues working in
the USA found that exercise enhanced learning and improved memory with people living with dementia but
also increased the size of the brain’s memory centre, the hippocampus (Erickson et al 2011). Additionally,
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fit as a fiddle with Age UK London – Dementia legacy resource pack
Rebecca Genoe’s work in Canada shows how leisure can be a space to resist ageist stereotypes and the
stigma associated with dementia, leading to feelings of empowerment (Genoe, 2010). Mike Boyes’ work in
New Zealand (Boyes 2012) outlines how outdoor adventures are positive leisure experiences which are
relatively low cost, community based and are a successful ageing strategy.
Dementia Adventure has led a number of successful nature based programmes which have identified the
benefits to people living with dementia connecting with nature (Dementia Adventure, 2012). These benefits
are physical, emotional and social:
Physical benefits
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Improved sleep
Improved dietary intake
Improved activity and exercise levels
Multi-sensory engagement and associated joy
Increased verbal expression
Improvement in memory
“I don’t care how cold it is, I like the fresh air”
Emotional benefits
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Mood enhancement
Spiritual uplift
Stronger sense of self
Having more control
"I felt alive, wonderful day! I remember the arch way with all
the flowers hanging down, I cannot walk and need help from
kind people to take me these places and relieved that it can
happen”
Social benefits
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Sense of belonging
Sense of friendship and kinship
Community presence and activity
Co-incidental positive social encounters
“It is important to get out into the larger world and
community so you don’t get shut away.”
Benefits to green space organisations
Many staff and volunteers in green space organisations do not have direct experience of providing services
with or working with people living with dementia. It is more common for staff to have experience with the
engagement with children and physically disabled people in particular and the respective green space
websites, facilities and information resources reflect this. The benefits to green space organisations, from
involving people living with dementia are still being explored and clarified but include:
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Sharing their resources with a group they have traditionally not engaged with
Generating new members, new visitors and new volunteers
Meeting equality targets and community engagement objectives
Challenging barriers to access and engaging with new stakeholder organisations
Strengthening staff relationships and additional volunteer roles
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fit as a fiddle with Age UK London – Dementia legacy resource pack
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Improved reputation
Improved practice standards
Innovative opportunities for intergenerational events and projects
In March 2012 the Prime Minister launched his ‘Challenge on Dementia’ (DH, 2012) in which he raised a
challenge to the whole of society, as well as government. The dementia challenge focuses on three areas:
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Driving improvements in health and care
Creating dementia friendly communities that understand how to help
Better research
The dementia legacy project contributes to the practice based learning and development which is taking place
around the country seeking to understand how best to create ‘dementia friendly communities.’ We believe that
green space organisations and a wide range of leisure providers have a significant role to play in answering
this challenge.
Dementia Friendly Green Spaces checklist
Dementia Adventure has a successful track record in designing and leading small and large groups of people
living with dementia on nature based adventures including park and woodland walks and sailing holidays. Our
experience of providing these nature based adventures combined with our own research work ideally places us
to share information about what green space organisations might think about if they are interested in making
their green spaces dementia friendly. If green space organisations can make their facilities and spaces
engaging and enjoyable for people living with dementia then it is likely that other groups will also feel more
engaged and enjoy the space more.
What do we mean by Dementia Friendly? People living with dementia have told us that a nature space and
facilities can be said to be dementia friendly if it enables people living with dementia to find their way around,
enjoy activity and be safe. Larry Gardiner, a gentleman living with dementia shared his thoughts during the
training day trialled as part of this project.
“The world becomes a safer place if you walk in my world”- Larry Gardiner
Larry’s insights in to what can be done to make places and spaces dementia friendly include:
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Don’t be afraid to offer a hug if required
Adapt what is done by taking into account the individual’s specific needs.
People living with dementia should have a voice and a choice
People living with dementia need a bit more time
People living with dementia need a sense of being wanted and connected
People living with dementia want to be part of a normal world
Dementia friendly green spaces are:
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Welcoming
Easy to access
Easy to find your way around
There is information about what you can see, hear, touch, smell and taste
If it has staff and volunteers who are aware of dementia and can offer specific support if needed in a
way which is respectful
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fit as a fiddle with Age UK London – Dementia legacy resource pack
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Adopts a risk-benefit approach in providing a stimulating yet safe environment
We have compiled the following questions, as a self-assessment checklist for green space organisations in
particular. In addressing each of these questions we ask that you keep Larry’s insights in mind “The world
becomes a safer place if you walk in my world.” The questions follow a logical order starting from considering
what skills, knowledge and experiences already exist in your organisation, to considering what your parking,
reception areas, walking routes and nature spaces look and feel like. This list is a simplified version of a more
comprehensive audit which Dementia Adventure can offer:
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Has your organisation already carried out a disability audit?
Have you made contact with dementia support organisations (charities, care homes, health and social
care services) and groups of people living with dementia within a 45 minute car journey of your
location?
Do you know how to find local dementia support organisations and who the key contacts are?
Have you had conversations with staff and volunteers about their experiences of dementia and their
need for training?
Is there adequate designated parking for people who may need to park close to the main
attraction/visitor centre?
Are there accessible toilets which are clean, open and easy to find upon arriving at the main
attraction/visitor centre?
Is the location of the visitor centre/main facilities clearly signed from the car park?
Are the doors to the centre/facilities wide enough, easy to open and free of congestion?
Is there a well-lit reception area with clear signage?
Is there a trained member of staff and volunteers who can warmly greet ‘special guests’?
Are the highlights and features of the nature space clearly signed and easily accessible from the visitor
centre/main facility?
Are walking routes clearly signed at decision making points?
Do walking routes and nature spaces have accessible tables and sufficient seating/resting places?
Do walking routes have any accessible undercover space on route?
Are there any mobility scooters available or pre-bookable for people with more limited mobility to
explore more of the space?
Are there volunteers or guides who can support groups of people living with dementia to explore the
space?
Do the walking routes have trip hazards such as raised path borders?
Do walking routes use natural landmarks to help people find their way?
Is there clear and engaging signage, using words and pictures, which tells people what they can see
and help people find their way?
Do the nature spaces have ‘something for every season’ which provides a reason to visit the space
again?
Risk-Benefit assessment
Green space organisations, like many leisure organisations which provide services and facilities open to the
public, will need to conduct thorough risk assessments and ensure there are plans in place to ensure risks are
mitigated. There is however another side of this important equation when considering making natural spaces
engaging and enjoyable for people living with dementia, and this is benefit. If we consider risks in isolation,
without comparing them with the potential benefits then there is the danger (particularly when combined with
over-protective cultures) that people living with dementia get restricted or excluded from benefitting from a
particular space or activity. The notion of risk-benefit in the context of dementia has been comprehensively
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fit as a fiddle with Age UK London – Dementia legacy resource pack
dealt with by the Nuffield Council on Bioethics (Nuffield Council on Bioethics, 2009) and is recommended
reading for people wanting to know more about ethical decision making involving people living with dementia.
In this resource we share this simple risk-benefit tool for helping staff identify and weigh up the risks and
benefits for people living with dementia accessing and enjoying a particular nature space.
Risks: Using the table below, identify all the potential risks and list these on the left. Risk assessments often
include a scoring system for the likelihood and severity of harm as well as controls for risk. If you are familiar
with these then score the risks.
Benefits: Identify all the potential benefits and list these on the right. You might like to refer to the physical,
emotional and social benefits listed above. There is no accepted measure for the weighting (of relevant
importance) of one benefit compared with another. However, you may like to use a similar scoring system
based on the likelihood of benefit and the significance of the benefit.
Risks
Benefits
Weighing up – decision making
Now with the risks and benefits detailed and summarised compare whether you are happy involving people
living with dementia in the nature space or activity. Are you able to confidently describe how you have reached
your decision? What would give you further confidence to involve people living with dementia?
Dementia Friendly Training
As part of this dementia legacy project, a Dementia Friendly training day was held in September 2012 in
Epping Forest in Essex. A wide variety of green space organisations sent individual representatives, (13 in
total), who are working regionally and nationally and who want to do more for people living with dementia. The
day included insights from Larry Gardiner, as well as inspiring films from Dementia Adventure’s nature based
adventures along with group based work sessions. The day incorporated and introduced delegates to a
facilitation technique called Thinking Differently which enabled equality of contribution and the sharing
thoughts to quickly find solutions and personal actions to start putting these solutions in place. The individuals
on the training day said the day was:
Positive…challenging barriers…informative…inspiring…relevant…thought provoking…insightful…engaging and
worthwhile.
We asked training delegates what was the most useful thing about the day, they said:
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“The most useful thing was sharing ideas with others, even though I am from a very small organisation I saw
ways to adapt ideas to our situation”
“Finding out about the benefits to people with dementia experiencing outdoors and nature”
“Practically how to structure/set up a project which is ‘dementia-friendly’”
“Changing thought processes to be more inclusive to help provide a better service to the community”
Each of the training delegates committed to a three point action plan to start to embed this work in their
organisations and Dementia Adventure will be supporting them to fulfil their actions. An example of a three
point action plan included:
1.
Report back to colleagues about today’s outcomes and develop ideas for future projects. First step in
providing a better service
Re design promotional material to be more inclusive and informative taking into account special
requirements to better serve people living with dementia. Expand distribution.
Organise and promote more inclusive events e.g. guided walks. Adopting presentation style to be more
involving. At the end of the year review numbers and gather reviews on events
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Do you work or volunteer in a green space or leisure organisation? Would you like to take action to involve
people living with dementia or make your services more dementia friendly? There are three things you can
consider to start taking action:
1.
Contact your local Age UK group for information (not all groups have dementia services but many do)
or local dementia support service (see resource section below)
Share the training outline summary (below) with your staff team
Get in touch with Dementia Adventure if you would like to invest in further training for your
organisation
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Dementia Friendly Training Outline Summary
The following outline is an adapted version of the training day which was trialled with green space
organisations as part of this dementia legacy project. We have adapted and shared this outline so that staff
working in a range of leisure organisations can share and lead a dementia friendly information session within
their teams. This session can be as short as one hour or much longer depending on your staff numbers and
services. It starts from sharing what is already known collectively and works towards committing to simple
action plans to do more to involve people living with dementia and work towards becoming dementia friendly.
Whilst this training approach works best with a skilled facilitator leading the session, we do encourage teams
to work through the outline below on their own as a first step towards sharing information and taking action.
Training outline
In order to get the best out of staff teams we advocate an approach which enables every participant to have an
equal voice and contribution. By taking turns to listen and taking turns to share our thoughts on a particular
topic we can quickly get to the heart of problems and generate solutions which we own. Therefore, we
encourage this training session to be held with a small team of individuals (6-15 people) where everyone can
see each other and listen to each other (sitting in circle or semi-circle, preferably without tables). Teams work
best together when we know that we are being listened to and that our opinion matters, when no one person
dominates and when we collectively share our thoughts in answering positive questions. We advise you to
share the Dementia Legacy Insights report and this resource with individuals as preparatory reading ahead of
the training session.
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Welcome and Introductions – Frame the session: explain that we are here to talk about dementia and
making our services dementia friendly. You may like to show the fit as a fiddle film and/or a short
awareness film on dementia at this point (see resource section below). Then start with a group
practice round in answering the positive question “What is going well in your work or life?” (N.B.
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everyone to take an equal turn in succinctly answering the question, no-one speaks twice until
everyone has spoken once)
Sharing experience of involving people living with dementia or their support organisations – Repeat
the turn taking round as a group answering the question: “What experience or knowledge do you have
of involving people living with dementia or their support organisations?”
Dementia Insights report: Working in pairs now (or in smaller groups of 3 or 4) each take turns
answering the question: “What are your thoughts about how we may take action on the opportunities,
key messages and resources shared from the fit as a fiddle dementia legacy project?”
Action planning: Staying in your pairs or small groups work together and support each other to
generate and write down three personal actions you can commit to after the session has finished (e.g.
if there are 10 people taking part you should collectively have generated 30 actions, 3 each). These
actions should ideally be specific, measureable, achievable, realistic and time bound. Actions can be
divided into:
o Small actions: something you will personally do in the next week
o Medium actions: something you will do in the next month
o Big actions: something you will do in the next six months
Concluding and next steps: Return to the larger group, take turns to share your three point action plan
with the group (you may want to do this with post it notes and/or flip charts). You will hopefully find
that people have similar actions and can support each other to fulfil these actions. Finish with a
closing round of “what has been good about this session?”
References and resources
Would you like more information? We have compiled a list of other resources, reports and websites for the
interested reader below. Work in this area is developing fast, to be kept up to date please visit the Dementia
Adventure website and subscribe for email updates.
AGE UK London http://www.ageuk.org.uk/london/ has a variety of information and resources online, including
information on fit as a fiddle and finding your local Age UK.
Age UK http://www.ageuk.org.uk/ has an extensive range of information on a wide variety of older peoples
issues, helps you find your local Age UK and has reports and resources on the national fit as a fiddle
programme
Alzheimer’s society http://alzheimers.org.uk/ provides an extensive range of information about dementia and
information about services and help in your area (via a postcode search function)
Alzheimer’s Society (2012) Statistics on dementia taken from the website Sept 2012
Boyes, M (2012) Outdoor adventure and successful ageing, Ageing and Society, published online 17th April
2012, P.1-22
Dementia Adventure www.dementiaadventure.co.uk and You Tube channel which contains various films which
can be shown for educational purposes, if you do so please credit Dementia Adventure
Dementia Adventure (2012) Wandering in the Woods was the title of a pilot project conducted with the
Woodland Trust and Caring Homes which identified the benefits of woodland activity for people living with
dementia in care homes.
Dementia UK http://www.dementiauk.org/ provides information, training and support for carers in various
locations through the Admiral nursing service.
Dementia Adventure CIC www.dementiaadventure.co.uk info@dementiaadventure.co.uk 01245230661
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fit as a fiddle with Age UK London – Dementia legacy resource pack
Department of Health (2012) Prime Minister’s Challenge on Dementia – Delivering major improvements in
dementia care and research by 2015
Genoe, R (2010) Leisure as resistance in the context of dementia, Leisure Studies, 29:3, 303-320.
Innovations in Dementia (2011) Dementia Capable Communities. The views of people with dementia and their
supporters, this report and many other resources on involving people with dementia can be found at
http://www.innovationsindementia.org.uk/
Kirk I. Erickson, Michelle W. Voss, Ruchika Shaurya Prakash, Chandramallika Basak, Amanda Szabo, Laura
Chaddock, Jennifer S. Kim, Susie Heo, Heloisa Alves, Siobhan M. White, Thomas R. Wojcicki, Emily Mailey,
Victoria J. Vieira, Stephen A. Martin, Brandt D. Pence, Jeffrey A. Woods, Edward McAuley, and Arthur F. Kramer
(2011) Exercise training increases size of hippocampus and improves memory, Proceedings of the National
Academy of Sciences of the United States of America. 2011 Feb 15; 108(7)3017-3022
Nuffield Council on Bioethics (2009) Dementia: ethical issues, Cambridge publishers Ltd.
University of Essex (2012) The Green exercise team have published a large selection of research about the
benefits of activity out in nature which can be found at www.greenexercise.org
About the Author
Neil Mapes is the founder and director of Dementia Adventure CIC, which is a multi-award winning social
enterprise specialising in connecting people living with dementia with nature and a sense of adventure. For
more information please visit www.dementiaadventure.co.uk
Sharing this resource
This resource has been written by Neil Mapes as a director of Dementia Adventure who retain the copyright of
this information. The resource has been made possible by Age UK London fit as a fiddle programme. We are
glad that this resource is being shared publicly to improve the lives of people living with dementia, but do
reserve the right to be acknowledged and ask that our work is appropriately credited.
Please contact us to discuss reproducing any part of this document in your work. We are keen to support
organisations wanting to implement this resource and the information (including the training) it contains.
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