The Fear of Dementia

I recently read an article on the nursingtimes.net website, headlined Dementia 'more feared than cancer' by older patients.  

The article was about a recent poll in which 100 patients over 50 were asked which they feared the most: dementia, cancer, heart disease or diabetes.  The results suggested that two thirds of them were more frightened of dementia.

Could this be something to do with the fact that a cure still seems to be a long way off and we lack the 'we can beat this' attitude that is now more common with a cancer diagnosis?  Or perhaps because the media tends to focus on the negative aspects of dementia, which makes for more sensational headlines, or maybe that many people in society still don't know much about this disease and therefore fear what they do not know? Perhaps it's a little bit of everything.

Whilst  research into a cure continues and early diagnosis is actively promoted, we still have a responsibility to make life as great as possible for people currently living with dementia.  I believe that it's only by creating social opportunities for people with dementia, with their neighbours, young people, shop staff - basically anybody else living and working in their community - that we help to break down social and emotional barriers.  The more people communicate with each other, the more they learn and understand each other and the better and stronger their connections are.  Fear is replaced with acceptance and ignorance with knowledge.

So let's not forget the importance of supporting people affected by dementia using social and creative approaches.  It is in these situations that people are able to communicate with each other through shared experiences and where they feel valued and accepted by others and where others are able to gain greater insight into the impact of dementia on those it affects.

A community trip to Eden Project; participants created
Nature Palettes, tasted food in the Mediterranean Biome
& got to know each other a little better

Wendy

Creative Spaces Project Manager

Drop-ins, Memory Cafes and the start of something new!

June and July have been  busy months for Creative Spaces in the Community.

Our drop-in sessions in St. Austell, St. Dennis and Roche created useful links with people living in those communities; not just dementia carers but people in the community that I call 'connectors'. You know, those people who know almost everybody.  Through them we are connecting with local schools, health centres, NEET groups (young people not in education, employment or training), libraries (including community libraries and mobile library services) and community cafes.

our drop-in sessions in ClayTAWC, St. Dennis (top left), Rest & Play cafe, Roche
(top and bottom right) and St.Austell Library (bottom left)

Meanwhile our work with Cornwall's Memory Cafes continues; last month it was Saltash and Penzance (not on the same day thankfully........that would be some travel!).  This month I've been to Redruth and St. Ives and shortly Downderry. Memory Cafes are fun and taxing at the same time.  We've made Memory Postcards, Nature Scrapbooks, woven hazel baskets and hanging decorations (both part of our Weaving Tales activity).

top left: Nature Scrapbooks;  Top right: Memory Postcards;
bottom left and right: Weaving Tales

You concentrate on ensuring that people are getting the most out of the activity, supporting them when needed but at the same time it's just so enjoyable chatting with everyone and watching people engage with each other.  I always leave feeling shattered but with a smile on my face!

So what is there to look forward to next?  Well, following on from the drop-in sessions we'll be developing one or two small projects in St. Dennis and Roche, involving people with dementia, carers and community members.  The aim is to start these projects soon, run them for a couple of months and then review their level of effectiveness in helping people to feel healthy and happy.  More about those later.

We've also recently formed a group of dementia support providers with Age UK, Memory Matters South West, Alzheimer's Society and United Response, amongst others.  Our aim is to share our work together, find ways of working together and promote the benefits of creative social support for people affected by dementia through the health and social care sector in Cornwall.  Not much to say on that at the moment but I'm hopeful it will develop into a strong network of organisations.

Wendy
Creative Spaces Project Manager

Creative Carers

It's amazing how creative you can be with materials found around the house and out in the garden, such as twigs, wool, ribbon, leaves and flowers.  Here's a photographic montage of our recent dementia community events that took place at Heartlands in Pool, Launceston Town Hall and the Eden Project.  Hopefully the images will reflect the amazing time that we all had; all down to the wonderful organisations who participated, the support of the venues and the attendance of carers, families, friends, care professionals, people living with dementia and the general public.

         

cress-growing kits - free
to take away

Free Creative Spaces resource
bags for home carers

     

Colourful tables help to attract people to activities

our Nature Palette activity - brimming
with spring flowers, herbs and leaves

         

 

Sue McDermott (Memory Cafe
Network Manager) chats with an
interested couple

People enjoying the
Weaving Tales activity

Trainee nurses engage with
the Nature Mobiles activity

               

Singing for the Brain sessions stimulate
your motor neurons and have your endorphins leaping for joy!

Our Sensory Trees activity table at Eden
looks good enough to eat!

A jumbled picture in our quiz sits behind the Reflections
South West stand..........yes, they're real cakes!

Quizzers post their answers
and hope to win a prize

 

One lovely Weaving Tales ornament made by a gentleman
with a lot of patience!

The Hedgerow and Herbs table full and
evocative...just like an English hedge

Commissioned by Arts for Health, Victoria Bampfield-
Hammond encourages participants to create an amazing,
enormous birds nest.....

..including me

Picture books from the library offer
reminiscence stimulation

We connect so easily through 'making' together

Conversations cross generations

Whatever our age or ability, we are a social species that
loves coming together and interacting in meaningful ways

Organisations who participated included:
Age UK
The Alzheimer's Society
Arts for Health Cornwall
Memory Matters South West
Reflections South West
Memory Cafes Network
Launceston Memory Cafe
Dementia Friendly Communities
Cornwall Care
Time for Change
WRVS
Carers Rights

Their advice and information was invaluable to the families and carers who attended and helped raise awareness among the members of public who dropped in.

Thank you to everyone for making these events worthwhile and a whole lot of fun!

Wendy

Creative Spaces Project Manager

Human connections

In a recent radio interview about Creative Spaces, I related the story of Nancy and the garden urn to Marjorie, the host presenter on Radio St. Austell Bay.  This story is about one of several meaningful moments which led to the creation of the Creative Spaces project.

Seven years ago, we ran an activity afternoon for a group of Cornwall Care residents and staff.  As part of the activity, everyone had selected an image relating to outdoors and was asked to describe why that particular image was important to them. Nancy had chosen an image of a garden urn; she liked the way it had been made and it's shape.  As the conversation progressed she compared it's shape to stages in life. This is what she said:

This is like when you're born (the base of the urn).  As your life fills with friends, husband, children, houses and things it gets fuller (the body of the urn).  Then you grow older; your children leave home, your husband dies, friends move away (the tapering of the urn's neck) and you move to a smaller home and of course this (the open top of the urn) - this is when death releases you.  

Her words demonstrated she had re-connected with her life and made a connection with us....and all through a photograph of a garden urn.  It made me think....if this could happen through a picture, imagine what strong connections people with dementia could make with other people, through meaningful conversations, in outdoor environments where features/landscapes/activities are real, where they can be immersed in sensory and social stimulation? 

Marjorie was moved by Nancy's story and asked if she could write a poem based upon it. She connected with Nancy through hearing the story and strengthened that connection through writing this poem.  In reading it you are also,in a way, connected with these women.   I wonder how far these connections will spread?

THE URN 2nd March by Marjorie Fenston James.

I gaze at photo of Urn.

Is it Greek or Roman

Or modern!

They once made pots to hold wine and oil.

Now I see story of my Life. Birth

in the Base molded by Mother.

Development of Childhood.

Gradually widening in experience.

The child grows, learns each day

Storing facts on the way.

Then teenage years of joy and pain

Memories flood back again.

Marriage, husband and wife

Curve of Pot brings fullness of Life.

Children come as the years progress,

filling the urn with happiness.

Experience and work takes its toll

Like the pot, years pass in a roll.

The Urn narrows.

Children flee the nest.

Time for more peace and rest.

Of feeding bird, watch flowers in garden.

Funneling back to Spiritual realms

The Urn..symbolic of Life's rich pattern.

Wendy

Creative Spaces Project Manager

Lights....camera......action!

November's been busy for Creative Spaces.

Our presentation on the project and the Dementia Uncovered films at the Congress went really well.  I wasn't sure what to expect so was truly happy when our presentation, including the two films - Quietness on such a scale and Skin - were well received.  In fact I'm sure there was a definite increase in presentations that focused on outside environments and outdoor-related activities at this conference compared to last year's and that fills me with a lot of hope.

About a week later we had a screening of the films at the Cornish Film Festival in front of an audience that included artists, film makers, educators and professionals in the area of inclusive communities and dementia care. Our panel consisted of myself, Rose from FEAST, a community arts based organisation in Cornwall that funded the project, and 4 of the film makers.  It was deeply moving to see the films on the 'Big Screen' and to hear all the positive comments afterwards.  In fact the feedback was so positive we're looking at entering them into other film festivals; possibly even international.

Talking of which.......

The films have received attention in Canada after a short article was submitted to the Canadian Dementia Knowledge Translation Network (CDKTN).  They included it in their November e-newsletter with a link to the films on YouTube.  Thanks for that CDKTN - very much appreciated!

If you haven't seen the Dementia Uncovered films yet you can view the show reel and/or all six individually HERE. 

Now that we are focusing on supporting home carers and people living with dementia in their own homes we've been working with Memory Cafes around Cornwall in testing out some of our new resources.  The feedback so far has been very positive and carers are now starting to use the activities at home in-between their memory cafe sessions.  The new activities are not yet public but keep an eye on this blog, we'll be letting you know when they are.

A series of larger community events will be held next year in Cornwall where participants will receive free resource packs that will include activities and activity fact sheets to help them at home so it's important that we produce quality resources and that they do benefit and support those living at home with dementia.

Finally, I have news on another film.....this one is about the project itself and is simply called 'Creative Spaces...Dementia, Community and Environment'.  We, and the young people from Penrice College, have been filming on and off for the past 3 years and have put together a film about the processes and activities we used to help Trevarna's residents to re-engage with their community.  At the moment we only have a link from here to our YouTube channel, but shortly you'll be able to watch the film on our website.

So why not  grab a cup of something hot (or not!), a plate of something yummy, put your feet up and enjoy the film?  Click HERE to view.

Trevarna care staff were interviewed by young people
involved in making the film

Back with more updates soon; keep watching!

Wendy
Project Manager

From care home to home care

Whoooooooosh.....that was it; that was the Summer!  The last few months flew past like a non-stop train.  So on to the latest news before we find ourselves celebrating a new year.

National Lottery Awards - Best Health Project
Firstly, a huge "Thank you!" to everyone who voted for the Creative Spaces in the National Lottery Awards this summer. Sadly we were not one of the final three but it was a huge compliment to be shortlisted by a panel of judges and we're very proud of that.  It was a testament to all the hard work that everyone put into the project.

Has Creative Spaces finished?

Well, the Reaching Communities grant has finished and it's amazing to see the overall achievements from the past 3 years. We have engaged over 200 older people with dementia in activities and outdoor environments with over 60 young people.  As a result they have felt less isolated and anxious and become more engaged with their communities, whilst the young people have increased their understanding of dementia and made real friendships with them.

Over 600 carers (professional and non professional) attended workshops, events and presentations and gained more experience of using outdoor environments to support dementia care and social integration. Nearly 350 people from local communities joined in events, activities and day trips; gaining a better understanding of dementia and how people with dementia can play active roles within their community.

Our resources, publications and activity sheets were disseminated out to just under 2000 people - including care professionals, relatives, care volunteers, landscape architects and garden designers as well as other professionals.  Articles written for national publications reached a much wider audience.

Add to that observations and accounts of reduced anxiety and improved sleep in residents; of friendships formed, fears banished, skills discovered and people generally feeling more supported and valued. That kind of impact you can't put a figure on. All in all, 3 years well spent.

But the story is not over..........

Creative Spaces Part II
......it continues in the form of Supporting Change and Impact grants from the Big Lottery; providing a further 12 months funding to take the process and activities used in care homes out into the community to support home carers and people with dementia living at home.

It's a new project but as it's developed from our previous work, we're keeping the name!  New resources are being developed, along with guidance materials for home and community carers.  Community events will take place and a local support network established.




Hollywood here we come!
It's all about camera angles, lighting and story-telling at the moment. There's soon to be a short film about the project itself; covering the garden design, activities and community engagement and we already have a 3 minute film on YouTube, entitled Ernie and Ethan - just two lovely chaps (one aged 91, the other aged 14) talking about their friendship and involvement in the project.  You can view it at http://www.youtube.com/watch?v=P1BkUUhC8Bw

Remember our call for applications to produce films from poems? (Dementia Uncovered' post; April 2012).  The 7 commissioned artists have produced 4 films, 2 animations and a digital image for us and we can't wait to show them publicly.  There are no set dates yet but we expect them to be ready by the middle of this month and you'll be able to view them through our website, YouTube, at various community events and conferences as well as this year's Cornwall Film Festival in November.

Watch this space for a red carpet.


And finally...
I'd like to end this post with a tribute to Ernie who passed away this summer at the grand age of 91.  Ernie participated in the project from the beginning.  He loved his chrysanthemums, loved being outdoors and loved the company of others.  He broke into a song about apples at Heligan Gardens and at the Eden Project he regaled us with stories of distilling wine down to pure alcohol as a young man in the army.  It was a pleasure to be in his company and, although he is sadly missed, will always be remembered with great affection every time we see his Chrysanthemums bloom in the garden.

                                                                                                                                                                                                                                                                                                      

National Lottery Awards - vote now!

There's a mixture of mayhem and jubilation in the office at the moment.  Creative Spaces has been short-listed for a National Lottery Award!  Along with 9 other projects we are in the semi finals for the Best Health  Project category and up for public voting.

This means that from yesterday until midnight on the 22nd July we need your help to get this project through to the final and to have the opportunity to raise awareness on a national scale of all that the project has achieved.

And by that I mean the achievements by everyone involved; the people with dementia, the young people, carers (professional and non-professional), volunteers, community members and health and social care professionals in Cornwall who have all contributed to the success of the project, as well as our combined team of the Sensory Trust and Cornwall Care.


Please support us and help us to highlight this project and the importance of outdoor environments in reconnecting people with dementia with their communities and increasing public understanding.


You can vote through the National Lottery Awards website or phone 0844 836 9705


Thank you for your support; fingers crossed!








Wendy
Creative Spaces Project Manager

Garden community celebrations

The new inclusive garden at Trevarna was officially opened in April.  Colonel Edward Bolitho OBE, Lord Lieutenant of Cornwall attended and 'cut' the ribbon to reveal a Welcome sign specifically designed and made for the garden entrance.  He spoke of the need for more community projects such as this one and the value that inter-generational projects have for everyone involved and the communities as a whole.  Speeches were also given by Jane Stoneham, our Sensory Trust Director and Douglas Webb, CEO of Cornwall Care our project partners.

 

Everyone involved in the project had received an invitation in the form of a small box containing an invite, an Acidanthera bulb, some compost and a small pot.  People were asked to plant their bulb and to bring it along on the opening day to plant out in the garden.

Trevarna Manager, Anne & young
people plant their bulbs

community members involved in the
project chat over bulb planting

   

Students from Penrice Community
College have been involved since
Year 1

Trevarna staff and residents, their relatives, students from Penrice Community College and The House Youth Club, contractors, gardeners, community members, other care professionals, management and Trustees from Cornwall Care and Sensory Trust all joined together for an afternoon of bulb planting, drinking tea/wine, eating cake/cream teas, wandering around the garden, chatting and listening to live music by young people from The House. Around 60 - 70 people in total attended and local press were there to capture the afternoon's celebration.

   

staff and residents enjoying their garden together

Young people from The House entertain the guests

community members gather to explore the garden

staff and Ade the gardener enjoy some time off work

everyone together to plant bulbs

Smiles and conversations

Engagement and communication

rain doesn't stop the music

Smiles from Jane, myself and Rose

Cornwall Care management make a mean cup of tea!

                                   
Even the dark grey clouds managed to hold in the rain until all the planting was done; at which point they couldn't hold back any longer and poured their contents onto the garden.  We, fortunately, were indoors or under cover of a marquee at this point.

It was a wonderful afternoon!  I think this was the day staff and residents at Trevarna finally began to feel a sense of ownership of the garden.  You could feel the sense of pride in them and it was lovely to see so many residents outside, hobnobbing with Cornish gentry, chatting with the press and thoroughly enjoying the music provided by the youngsters.  It really was a community event and the start of many more to come.



Wendy
Project Manager

Nuns and neighbourhoods

A couple of snippets of information that I'd like to share today; otherwise I'll forget and it'll be weeks before I remember again!

The first is all about the Big Care Home Conversation.  This is an opportunity for you to provide your thoughts on what's great about living in a care home today, what could make it better and how that could be achieved.   The information is being gathered on the My Home Life website. Their aim is to use the comments provided by people with dementia, carers, relatives, friends etc to influence our government in the decision-making process of delivering good quality care in residential care/nursing homes.  Click the link HERE and follow the instructions. Take some time whilst you're there to read the leaves already on the tree; there are many that talk about providing residents with increased, meaningful social interaction and greater involvement in decision-making within the home, better training for staff and making the most of volunteers.  Sounds similar to our aims in Creative Spaces to me!

Whilst you're here, take a moment to read this e-newsletter from Richard Taylor.  I heard him talk at the ADI Conference in London earlier in March.  He's a straight talker and very passionate about raising awareness of dementia, of sharing information and ideas globally. In this e-newsletter Richard has included several interesting articles. Not that he hasn't in previous e-newsletters, but there were several articles in this one that I found particularly relevant to this project and the work of the Sensory Trust.

There's the research previously undertaken of a group of nuns living in a convent in Minnesota; many living into their 90s and even 100s+  (I'm just off to find a local convent); an award-winning poetry project used to facilitate the creativity of people with dementia (that sounds familiar) and finally a piece about poor design principles that have negative impacts on neighbourhoods, isolating older people in their communities and reducing opportunities for social interaction (a topic very close to the hearts of everyone here at the Sensory Trust).


Wendy
Creative Spaces Project Manager

Cornish hedges and sunshine

We began our first Creative Spaces community workshop, held at the very friendly Rest and Play Cafe in Roche, with our Nature Palettes activity(see 'Palettes, Naturally Brilliant!' posted October 2011), making the most of a rare appearance from the sun!

Off we wandered, along a short walk, collecting leaves of all shapes, sizes and hues of green; petals of blue, pink, yellow and white; a lost feather or two and anything else lying on the ground that we found interesting. We were even presented with Camelias by a gentleman who was pruning them in his garden.  Participants made colourful 'palettes', evocative of Cornish hedgerows and country walks. Naval Pennyworts, Ivy-leaved Toadflax, Forget-Me-Nots, Hairy Bittercress, Primroses, Red Campion, Herb Robert,  Laurel leaves, to name a few, all adorned the palettes in colourful displays. 

Activities aid communication and put people at ease

One of our participants & her Nature Palette

Back inside and on to our next activity - bird food hangers.  This is based on the winter bird food garlands, an activity we did last year, showing how you can make outdoor decorations from natural materials that also benefit the wildlife in your garden.  This time, we put a spring 'twist' on it.

Cut some thin garden wire to whatever length you like (it will eventually be hung from a branch rather than draped over it) and thread pieces of fruit onto it, ensuring that the bottom has been looped around first to prevent anything falling off.  Occasionally thread on garden flowers; dandelions are great for this as their stems are large enough and hollow to allow the garden wire to pass through the flower head without breaking it apart.  Every few centimetres wrap the wire around a thin twig to provide a 'feeding perch' for the birds; in this instance we used Box, cut into about 15cms lengths. With it's small dark green leaves it provided a lovely contrast to the fruit and flowers. Hawthorn twigs would also make great perches at this time of year, their small, white flowers would add decoration to the 'hanger'. Make the top of the wire into a hook shape and hang in the garden. Eh Voila!

Added flowers make the 
'hanger' more decorative

Bird food hangers & garlands help
reflect the time of year

 So much time was spent chatting with participants about aspects of dementia and enhancing people's daily lives through creative support that we actually ran out of time to do our other activities, so we packed everyone off home with an Activity Pack and enough materials for them to make their own Nature Scrapbook in their own time.  But our activities are as much about encouraging conversation as they are about promoting creativity.  We often learn more about someone else whilst we are joined in some creative outdoor activity, walking side by side, sharing stories and memories, than just sitting side by side in chairs indoors.  The conversations at our workshops are as important as doing the activity; it helps put people at ease, helps reduce their feelings of isolation and frustration. Everyone had an enjoyable afternoon and before they left, the participants said they had learnt so much and felt much better about supporting and caring for someone with dementia; thankfully, that's what we aimed to achieve!
      
On a different note, we've sadly said cheerio to Ellie, my partner-in-crime (aka Creative Spaces Project Officer) who's been with us for about 13 months, covering maternity leave.  She was a real asset to the project and her love of all things creative and glittery meant that her activities always made a sparkling mess and, more importantly, were thoroughly enjoyed every time by the participants!  She's now working with and mentoring young people with mental health issues and we wish her all the best.




Wendy
Project Manager