New blog home!

The Bright Shadow blog has now moved to a new home on Bright Shadow’s website. You can find our blog posts under ‘News’. Why not take a look now at our most recent blog post ‘You are not alone: 5 challenges faced by activities workers’

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Thank you for reading our posts-we value each and every one of you! We hope you will continue to enjoy reading our blog on our website.

3 hopes for 2015

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I’m not a big fan of New Year’s Resolutions, they are often unrealistic, easily broken and are often related to something we are not happy with about ourselves (eg. loose fat, build muscle mass and quit nicotine, caffeine, alcohol, chocolate, wheat or anything else that tastes nice). Now, I’m not arguing against the benefits of pursuing a healthy lifestyle, but I am arguing against making resolutions. Resolutions can imply success or failure and pile on guilt and shame about your ‘pre-resolution’ or ‘post-breaking-the-resolution’ self. In order to keep them, resolutions often require us to set some rules to live by, and there is nothing like a rule to make me want to rebel!

Maybe it’s just me.

But, I’d like to make the case for creating ‘hopes’ as an alternative to making resolutions. Hopes look positively at the future, can remain strong in the face of set-backs, can galvanise movements, unite people and can be fulfilled in many varied and often surprising ways, both big and small. Hopes don’t let us off the hook, we still need to play our part to see them fulfilled and to keep them alive, but somehow I feel more inspired to do this, rather than keep a resolution.

Therefore when Bright Shadow is considering the year ahead, rather than making resolutions, we are creating some hopes, which we will be attempting to keep alive and play our part in seeing them fulfilled this year.

We hope that in 2015 a person with dementia’s future will be valued as much as their past. Too often people with dementia are treated and regarded as if their best days are behind them. This then causes people to have a ‘what’s the point?’ attitude towards a person with dementia’s experience of the present and the future. When we start to really value a person with dementia’s future, we will positively impact their present and be motivated to provide excellent, meaningful and compassionate care and services

We hope that in 2015 the story the media and society tells us about aging and dementia will be a balanced and more positive one. When the most accessible narratives about ageing and dementia tell a mostly negative story, it is no wonder that people avoid positively engaging with the subject. They are worried the horror stories will become their futures and so hide from it. They also hide from anyone that might remind them that old age and dementia could be parts of their future. We love articles like this one, that highlight the issue but also give us hope for the narrative of aging and dementia to change in the future.

We hope that in 2015 every person affected by dementia will be able to say they have the opportunity to thrive every day. Dementia doesn’t automatically mean a person wants to stop being inspired, leaning, being active, expressing themselves or having new experiences. To thrive is to feel alive, to flourish, to make the most of life and to grow. We hope that everyone affected by dementia has opportunities to do this every day through accessible cultural venues, societies, interest groups and recreational activities as well as excellent services.

We know we have high hopes. We know we might not see all of this fulfilled this year. But we know that it’s easier to break a resolution than to abandon hope.  


*Got a topic you would like us to write about? Let us know by getting in touch here.

* Want to receive an alert of when we put up new posts? Sign up to Bright Shadow’s mailing list and keep up to date with al the company’s news.

If you would like to see some Performance and Dementia activities in action in your setting or would like some training in doing this yourself, please visit our Bright Shadow page or Contact us.

Find us: @brightshadow_uk

Email us: info[at]brightshadow.org.uk

Ring us: 07823 697697

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Never Say Never: Guest blog by Liz Jennings

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There’s no greater joy than doing that which others say you can’t do, don’t you think?

The ex-smoker who faces scorn from friends when he says this time really is it, he really is going to stop. He knows they don’t believe him. They even offer him cigarettes themselves to test his resolve. But he does it; he stops for good. And, alongside the pleasure of knowing his health is improving day upon day, he has the extra tasty side-dish of having accomplished the thing that no one thought he would ever really manage.

Or the person who loses weight – and keeps it off – despite those around them constantly attempting to stuff cream cakes and chips down their throat and waiting for them to give up and give in.

I had a similar experience myself when we bought some plane tickets to go travelling. We’d been married just a year when we started talking about going off together for six months around the world. I’m not a traveller particularly, quite the home-bird in fact. But my husband was more adventurous, and had this vision of us exploring new places together.

My family smiled and nodded and said ‘yeah, yeah, lovely,’ in all the right places. But I knew they never really thought I’d do it – it just wasn‘t the sort of thing I did. I’m not sure I particularly believed we’d do it myself.

And then we did it.

I’ll never forget the beautiful double take of total shock from my brother when we told them we’d be leaving for Los Angeles on October 14th 2001. Simple pleasures that still make me smile, all these years later.

How quickly we can write people off as failing before they’ve even tried. I hate it when it’s done to me – and then I’m ashamed to admit I find myself doing it to others in just the same way.

Each of us faces this battle against what others have already decided we are and aren’t capable of. And we’re all doing it to each other, all the time. When I listen to those voices, it’s easy to admit defeat before I even try anything: no risk equals no failure equals no public embarrassment.

But when we look for potential in each other, when we dream together of what we might just be capable of with support and encouragement – well, then something extraordinary can happen.

The area of mental health is one where prejudice reigns supreme, and it’s these judgements, often made out of fear or ignorance, that can make those dealing with issues of mental health feel stigmatised and pigeon-holed.

Take dementia: in a world where we’re given only the headlines, it’s easy to form a quick-fit picture of what a person living with the disease looks like: lost in their own world, and lost to their loved ones. We’re spoon-fed an image of a group of people who are no longer contributing to society, or engaging with it.

And yet, recently, I’ve seen first hand what someone with dementia can achieve with constructive support and encouragement.

        ‘Welcome To Our World,’ published in October 2014, was borne out of a life writing group which ran in Canterbury. The eight participants all have dementia in varying stages. They also have a shared desire to engage in life, and to continue to experience meaningful relationships.

The course was initiated by Keith Oliver, an ex-headmaster who was diagnosed with young onset dementia a few years ago. Now a dementia envoy for East Kent nhs partnership trust, Keith strives to live well with dementia, and this book is the result of his incredible tenacity and determination to show just what this group of people are capable of.

It’s a million miles away from the image of a person closed to and from the world.

There really is no greater pleasure in life than doing what others say cannot be done. These eight writers should certainly be enjoying the fruits of their labours and the light they’re shining to show others how people living with dementia can indeed contribute to society in a meaningful, exciting way.

Liz Jennings is a writer and writing tutor with over twenty years’ experience. Her new collection of short stories, ‘Blank For Your Own Message,’ is available to download from Amazon Kindle.

5 Inspirations from Dementia Congress

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Last week was the annual Dementia Congress in Brighton, two days jam-packed full of information, insights and inspiration from people delivering best practice in dementia care. We at brightshadow went and put our creativity to the test in order to represent one of our themed workshops on a 6ft table! We opted to represent our Desert Island workshop, so if you were at congress, we were the people with all the coloured garlands, peacock feathers and a sand-pit!!

Whilst I feel like I am going to need a good few days to read and reflect on all that I heard at congress, here are 5 bite-sized pieces of inspiration (and links to help you find out more) that I hope will inspire you too:

1. Toby Williamson from the Mental Health Foundation presented an early bird session on ‘What is Truth? Exploring the real experience of people living with more severe dementia’. Tony encouraged us to consider people with dementia as living in ‘different realities’ rather than thinking of them as having symptoms such as delusions, hallucinations or confusion. He encouraged us to get into their world and see these realities as valid experiences.

2. In the opening plenary, we heard from some people living with or caring for someone with dementia from the DEEP group, all of whom were inspirational. Suzy Webster, who cares for her mum who is living with dementia stated that she learns from her children who ‘don’t miss who she was, they don’t fear who she will be, they just see her as Mum and are in the present moment’.

3. Keith Oliver from Kent based dementia support group ‘Forget Me Knots’ presented their recently launched book ‘Welcome to Our World,’ a wonderful collection of pieces of writing from people with dementia. This book was created through a course run by our wonderful friend Liz Jennings and celebrates this group of people with dementia as authors in their own right with wonderful stories to tell.

4. We heard from Landermeads Nursing Home, who through working with Dementia Care Matters had used the ‘Household Model’ to transform their home into a number of smaller ‘cottage’ homes, where small groups of people live together in more authentic, homely environments. This better enables people to live in community, feel ‘at home’, take on roles and have meaningful relationships with staff.

5. My final session at congress involved a beautiful piece of theatre by Haylo Theatre company called ‘Over the Garden Fence’, in which we follow Molly and her journey into dementia as she re-lives some of her cherished and not-so-cherished memories. The whole performance was very moving, but it was the opening and closing line of the play that has continued to be in my thoughts. They were words to the effect of: ‘Imagine that you and I are sat at a table in a cozy living room, drinking tea. And what if I said to you, that our memories can sometimes feel more real, than you and I sitting at this table right now?’.

This performance provoked me to continue with the train of thought that the first session had set in motion-around truth, reality and the validity of the experiences of people with dementia. As Suzy later suggested, living in the present moment with a person with dementia is an incredibly important part of loving them well. Therefore, my take-away question from congress is ‘How can we use creativity to enable people with dementia to thrive, by entering into and validating their present experience of reality?’. Once I have got my head around the question, I’ll start exploring the answer…!


*Got a topic you would like us to write about? Let us know by getting in touch here.

* Want to receive an alert of when we put up new posts? Sign up to Bright Shadow’s mailing list and keep up to date with al the company’s news.

If you would like to see some Performance and Dementia activities in action in your setting or would like some training in doing this yourself, please visit our Bright Shadow page or Contact us.

Find us: @brightshadow_uk

Email us: info[at]brightshadow.org.uk

Ring us: 07823 697697

Autumnal Adventures!

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Autumn is by far my (Katy’s) favourite season. It its so sensory, with crisp mornings, golden trees, woolly scarves and crunchy, sweet toffee apples. So sensory in-fact that we couldn’t resist using it as a theme for one of our Zest workshops. This workshop is now one of our most popular, therefore we decided put our brains to use and create 10 ideas for how you can use creativity to celebrate Autumn in your own settings and homes, either as a group or a one on one activity:

  1. Make bunting from golden-brown and orangy-red leaves and string up around the home/centre.
  2. Make a ‘bonfire’ by twisting pieces of dark brown paper into ‘logs’ and arranging them on the floor, before piling up pieces of yellow and orange paper that have been scrunched into balls on top of this.
  3. Sit around your ‘bonfire’ and tell campfire stories or sing some favourite songs.
  4. In a darkened room, create your own firework display by shining torches onto the walls, mimicking the movements of fireworks. You could change the colour of the torches by securing some coloured acetate (or sweet wrappers would work just as well) over the end of it.
  5. Run a sensory exercise by passing round lots of harvest-time fruit and vegetables to stimulate discussions about harvest festivals and autumn in general.
  6. If you have a playful group you could blindfold people and ask them to identify the fruit/veg through touch and smell.
  7. Enjoy drinking hot chocolate with whipped cream and marshmallows out of paper/polystyrene cups
  8. Sing some harvest festival hymns such as ‘We plough the fields and scatter’ and ‘All things bright and beautiful’.
  9. Play conkers! If the original game could get too messy, put a basket in the middle of the room and see how many conkers people can successfully throw into it.
  10. Write a poem about autumn by starting each line ‘Autumn is…’ and complete each line with a word or phrase that starts with each letter that spells the word ‘Autumn’.

Hope you have fun! Please send us any pictures of your enjoying these activities so we can all get inspired.

The above are all tips on how to make the most of Autumn indoors and how to use it to stimulate group activities. However, getting into the great out-doors to enjoy Autumn in all its natural splendour is also a marvellous thing to do. For help on doing this, please see the wonderful Dementia Adventure.

If you would like Bright Shadow to come and run their Autumnal Adventure Zest Workshop in your setting, please contact us. This workshop involves guy making, ‘walks in the woods’, story making, a DIY firework display and more!

 Book now to avoid disappointment!

Mrs Minteeda’s Marvellous Mind!

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On 5th and 6th September Bright Shadow were at the Ashley Shopping Centre in Epsom with their brand new interactive installation called Mrs Minteeda’s Marvellous Mind.

The objective of this installation was to raise awareness in the general public about dementia. We wanted people to not only learn facts and symptoms, but to experience something of how it might feel to be affected by dementia, particularly whilst living in the community. We believe in giving voice to people who may not otherwise have one in the public realm and so the creation of our installation was informed by conversations with people affected by dementia in Surrey. Each visitor to the installation was given a message from one of these people that they picked out of a tombola at the end.

70% of our visitors pledged to become a ‘dementia friendly’ person, the majority of these people also stated exactly what they would do to accomplish this. One under 18 year old stated ‘I would like to get a job caring for people with dementia’. This result to us was quite surprising: dementia is still sadly and unjustly surrounded by stigma, is a comparatively under-funded area and is not as ‘sexy’ a cause as ones related to children, the third world or the environment.

So what explanation can we give to this level of response? We feel it can only be attributed to the human connection created through the installation. Across the two days we had a total of 221 visitors, all of whom played a game of emotion bingo on their way round the installation. They were given a grid of emotions and were asked to circle any that they felt, were reminded of or thought someone else might feel in response to their experiences during their visit – they could also contribute their own emotion. 47 different emotions were identified, the highest three being confusion, frustration and sadness. However it is important to point out that loved, joy and enjoyment also featured in the top 10.

Once you have walked in someone else’s shoes, seen the world through their eyes and felt their feelings, you cannot help but empathise and want to make the world a better place for them. Living with dementia is a highly complex thing and we only gave people a tiny, incomplete and fleeting glimpse into it. However it was enough to stir a reaction in people and to drive them into action. If we really want to create increasingly dementia friendly communities then this is the way forward. Show people the human connection between themselves and a person with dementia, highlight the reality of the emotional effect of dementia on those it affects and place responsibility to change things for the better into their hands.

To view the full impact report see here.

 To see pictures click here.

 Mrs Minteeda will now be going on tour: suitable for public events, schools, colleges and staff training. Please email Rhiannon@brightshadow.org.uk

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Zest!

Our workshops for people with dementia, which are characterised by being participatory, sensory, themed have now been named ‘Zest’ workshops. These participatory activity sessions that use a variety of performance based activities are designed to bring life, energy and fun to individuals and environments. 

We want our workshops and the experience of the people taking part to be ‘Zesty‘. 

zest

noun 
1. the quality of possessing life, energy and fun
2. invigorating or keen excitement or enjoyment 
3. to enable something to thrive, to grow, to flourish
4. added interest, flavour, charm, energy, vitality, joy
 
Synonyms
Spirit, life, energy, pizzazz, bright, zeal, élan, fizz

We believe that every person with dementia has the right to thrive, to be celebrated for who they are today, to live as if their present and futures matter as much as their pasts and to experience life, energy and fun on a daily basis.

 Here are ten ways that we at Bright Shadow try to achieve and maintain ‘Zestyness’ in an environment or for an individual:

  1. Laugh
  2. Take risks
  3. Encourage and validate the sharing of real life experiences and whatever emotional response occurs.
  4. Accept and celebrate who a person is today
  5. Use the imagination
  6. Make some noise
  7. Break routine
  8. Hold meaningful conversations with people, in which we share of ourselves as much as listen to the other person.
  9. Offer new experiences and to try new things
  10. Be playful

 This is not an exhaustive list, but one that can be used very easily and flexibly. They can be applied to activity sessions, physical care activities and simply to general interactions and ways of being.

So, we encourage you to do what we have been doing over the past months, and pause for a moment to consider how much your interactions with people with dementia reflect the above definitions and ways to achieve ‘Zest’. You might also want to reflect on whether your own life is zesty, as that is just as important. In both cases, a few small changes can make a big difference. And it might be the difference between feeling that you exist and feeling that you are alive. We all deserve a life full of Zest. We all deserve to thrive.

 

 Bright Shadow specialise in delivering participatory performance based activities that bring Zest and have been proven to increase engagement, communication and mood. If you would like to receive some of our workshops or training for staff then please contact us.


*Got a topic you would like us to write about? Let us know by getting in touch here.

* Want to receive an alert of when we put up new posts? Sign up to Bright Shadow’s mailing list and keep up to date with al the company’s news here:  http://eepurl.com/JH9Mr

If you would like to see some Performance and Dementia activities in action in your setting or would like some training in doing this yourself, please visit our Bright Shadow page or Contact us.

Find us: @brightshadow_uk

Email us: info[at]brightshadow.org.uk

Ring us: 07823 697697

5 insights into activity provision within dementia care

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Bright Shadow recently undertook some market research, asking care organisations what activities they provided, what their priorities were in terms of activities and what challenges they faced.

We will be collating these responses into a report, but in the mean time, here are 5 insights from our research:

1. The top three activities provided by care homes were reminiscence, choir or sing-a-long sessions and exercise or movement sessions

 2. 70% of respondents worked with outside or specialist activity providers

3. The top three priorities outcomes for activity sessions are lifting the mood, meaningful activity and enabling self expression.

4. Amongst the biggest training needs identified for staff is an understanding of dementia and how it affects people differently and an increase in confidence.

5. One of the biggest challenges in providing high quality activities in dementia care is moving away from the idea that it is only the activities co-ordinator’s responsibility to provide and support activities.

It is encouraging to see that amongst our respondents there are good intentions and values across the board, but how do we ensure that activities that meet the priority outcomes highlighted in point 3 above are consistently delivered by all care providers? A pertinent further question that may add to this debate is ‘what is the difference between occupation and engagement?’ There is a difference between an activity that simply passes the time and an activity that piques your interest, gets you involved, provokes your thoughts, enables you to express something of yourself and energizes you. Both types of activity can be beneficial and enjoyable, but they both need each other in order for this to be the case. Sometimes I love nothing more than zoning out in-front of the TV (for me a passive activity), but only after I’ve had a busy day at work or had an active Saturday pursuing some of my interests.

I need both engagement and occupation and active and passive activities in order to have a high sense of well-being and so do people with dementia. Too often people underestimate the needs, desires and abilities of people with dementia and think that a programme of TV watching, bingo and monthly visit from the local Elvis impersonator is adequate activity provision. These are all good methods of occupation that will be enjoyable to many, but they do not provide the type of engagement that energizes, brings out a person’s personality, provides new experiences or that enables someone to thrive. In isolation they are not adequate, they must be teamed with activities that provide active engagement, of both the body and the mind. As one of our recent participants said to another before one of our workshops was about to begin: ‘I don’t know what this is, but anything’s better than watching the TV again’. Lets deliver care that is so full of meaningful activity that TV watching becomes something people choose to do to relax amid a full programme of activities, rather than the norm.

 Bright Shadow specialise in delivering participatory performance based activities that have been proven to increase engagement, communication and mood. If you would like to receive some of our workshops or training for staff then please contact us.


*Got a topic you would like us to write about? Let us know by getting in touch here.

* Want to receive an alert of when we put up new posts? Sign up to Bright Shadow’s mailing list and keep up to date with al the company’s news here:  http://eepurl.com/JH9Mr

* Next blog post: Top Tips to provide some ZEST!!

If you would like to see some Performance and Dementia activities in action in your setting or would like some training in doing this yourself, please visit our Bright Shadow page or Contact us.

Find us: @brightshadow_uk

Email us: info[at]brightshadow.org.uk

Ring us: 07823 697697

The battle against loneliness: a call to arms.

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According to a 2013 poll by the BBC, 48% of adults feel varying degrees of loneliness. In response to this, Jeremy Hunt (the Health Secretary at the time) said that society had ‘utterly failed’ to confront the problem of loneliness. Further more, loneliness is more prevalent in people over 65 and a common challenge for people with dementia.

It seems fitting this week to quote the late and great Robin Williams’ alien character Mork, who reports back to his boss Orson on his discoveries of the human race:

Mork: This week I discovered a terrible disease called loneliness.

Orson: Do many people on Earth suffer from this disease?

Mork: Oh yes sir, and how they suffer. One man I know suffers so much he has to take a medication called bourbon, even that doesn’t help very much because then he can hear paint dry.

Orson: Does bed rest help?

Mork: No because I’ve heard that sleeping alone is part of the problem. You see, Orson, loneliness is a disease of the spirit. People who have it think that no one cares about them.

Orson: Do you have any idea why?

Mork: Yes sir you can count on me. You see, when children are young, they’re told not to talk to strangers. When they go to school, they’re told not to talk to the person next to them. Finally when they’re very old, they’re told not to talk to themselves, who’s left?

Orson: Are you saying Earthlings make each other lonely?

Mork: No sir I’m saying just the opposite. They make themselves lonely, they’re so busy looking out for number one that there’s not enough room for two.

Orson: It’s too bad everybody down there can’t get together and find a cure.

Mork: Here’s the paradox sir because if they did get together, they wouldn’t need one.

To Mork, loneliness presents as a disease and in light of a recent study which found that loneliness is twice as unhealthy for people over 65 than obesity, it seems futile to disagree. But what is the answer? Everyone knows that you can feel lonely in a crowd, so the mere presence of other people does not provide a cure for this disease. 

Mork insightfully suggests that the root of our problem is that we have been conditioned to not talk to each other. When we don’t communicate, we don’t build connections or relationships. People don’t know anything about us, or what we are going through. This leads to feeling as if nobody cares about us, as if our existence is irrelevant. It means we do not feel understood or like anyone can identify with our experiences, thoughts or feelings. Loneliness becomes like a lurking predator, ready to pounce the moment we feel without a sense of belonging-to anyone or anything.

We asked a few of our friends-on and off twitter-what they thought ‘belonging’ meant. The most common word was inclusion. To be included you have to be there. You have to be involved. You have to be connected to other people and be valued for your presence and contributions.

 No man is an island, but rather as human beings we were created to relate to others and to experience family (whether biological or not). A large part of having a sense of identity comes from our interactions with other people. Both our sense of belonging and identity come from being connected to other people in meaningful and authentic ways.

 At Bright Shadow, one of our primary aims is to connect people.

Through our Zest workshops we aim to bring people with dementia together and enable them to express themselves, in order that they might be understood by others, be validated and develop relationships with those around them through a mutual exchange. We provide opportunities for people to come together to take part in meaningful activity. This approach has proven to be successful in building community in the home. One care home we worked with remarked:

 ‘Since Bright Shadow have been coming in, a group of three residents now congregate in the lounge on the more regular basis. They will sit down and have a chat. Sometimes it’s after the sessions, but most nights they will sit down together and that has been a regular thing since Bright Shadow have been coming in. Before they would sit there, but it would take us a lot of effort to get them to interact with each other, and now they do it of their own accord’

 This is possibly the best outcome we could have ever hoped for with our workshops: creating relationships and environments in which people with dementia are experiencing authentic community. They are present with one another, they are communicating, and importantly they now want to spend time with one another. Through being connected to people, they can more easily feel like they belong somewhere and the lurking predator, ‘loneliness’, has been warded off.

 So this is our call to arms for all of us that work in dementia care. One of our primary battles is against a lack of connection. We need to enable people to feel like they belong somewhere, that they are valued and have authentic relationships and encounters with other people. Our ammunition is a combination of time, respect, compassion, listening, curiosity, empathy, sharing of yourself, creativity, eye contact and bringing people together.

But what about care workers and activities co-ordinators who are valiantly responding to these challenges? It is easy to become lonely in our work, particularly when it can feel like an uphill struggle that we are facing alone. If that’s you, we invite you to join our gang and take advantage of a Bright Shadow Membership package. These packages include Zest workshops, a staff training session, materials, resources and bring you into a supportive community of other individuals dedicated to providing excellent and creative care for people with dementia.

If you would like a Zest workshop in your setting, please contact katy@brightshadow.org.uk


 *Got a topic you would like us to write about? Let us know by getting in touch here.

* Want to receive an alert of when we put up new posts? Sign up to Bright Shadow’s mailing list and keep up to date with al the company’s news here:  http://eepurl.com/JH9Mr

* Next blog post: Top 5 ideas for Summer time activities

If you would like to see some Performance and Dementia activities in action in your setting or would like some training in doing this yourself, please visit our Bright Shadow page or Contact us.

Find us: @brightshadow_uk

Email us: info[at]brightshadow.org.uk

Ring us: 07823 697697

Who told you that you were naked?! How creativity can help overcome embarrassment.

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Q: How does it feel to be in public if you have dementia?

 A: Embarrassment, fear of exposure, anxiety at being in public.

During Bright Shadow’s most recent project ‘Experiencing Dementia’ we have been asking people living with dementia and their carers to tell us what it feels like to live with dementia in the community. The response above is typical of those collected. People can feel embarrassed by their loved one’s behaviour or embarrassed by their own limitations or when they do not behave in a ‘normal’ way.

This left us feeling sad, another thing for people to struggle with. But then it made us think, ‘who actually has the problem here?’

One of the first recorded examples of embarrassment is in Genesis in the Bible. Adam and Eve are happily naked until after they ate the apple, then they felt embarrassed and covered themselves up. God’s reaction is, “who told you that you were naked?” The problem wasn’t their nudity, the problem came when someone/something else told them that being naked wasn’t ok and suddenly they were aware of it.

As we grow up we learn the social norms of our society and how we are expected to behave in social situations. We learn the rules and live by them in order to get along. These rules and social norms become what we, and others, expect to see. When we unwittingly act in a way contrary to this we can feel embarrassed and under the judgment of other people.

At Bright Shadow we want to re-imagine a society where a person with dementia isn’t ‘odd’ or ‘embarrassing’, but where their behaviour is welcomed as an expression of themselves and therefore ‘ok’. A person’s behavior is only considered as not normal when we hold up a mirror of social expectation and measure their reflection against it. If we remove this mirror then we can stop measuring whether something is normal or not and we can help ease the stresses on both carers and those living with the condition.

Here are three ways creativity can help us in the pursuit of embracing non-conformity to social norms:

  1. Set your own rules. In literature and films, the writer sets the rules, they re-imagine social conventions and construct their own reality. When you live with dementia it is normal that constructing a verbal reply can take a while, so let it take a while and encourage others into your world to wait. Conversations don’t have to be linear, some of the best poets and writers have made their living out of writing outside of ‘normal’ sentence construction. See if you can find the beauty and meaning behind the words and make them your world too. At Bright Shadow we make words into stories, Living Words make them into poems. All words are expression and there are creative ways to treasure them.
  1. Process over product. For the last century, artists have challenged the idea that logic is a bar against which creativity should be measured. Why then should people with dementia be measured against logic and fact when they are being creative? Creative expression is always good for us, no matter the results. As Claire Craig and John Killick say, a person with dementia should always be judged by their ‘inventive immediacy’ rather than ‘an adult aesthetic, whether amateur or professional’. So, some of the plants might come up with the weeds, the jumper may not be knitted exactly to the old standard, the painting might not look like the thing it represents, but does all of that really matter in the grand scheme? Being creative means to find something new, therefore lets encourage people with dementia to do things they enjoy, whether the end product is the same as it used to be or an entirely new one.
  1. Improvisation. When Bright Shadow create shows we do it through a technique called improvisation. We make things up, then we repeat them and repeat them. Sometimes we repeat it exactly the same, sometimes we ask different questions of the situation and get different responses. We continue in this way until we are happy that we have explored the scenario fully. My Grandad has vascular dementia and repeats himself a lot. For carers this can be frustrating and at times unsettling, so I started to think of the repetition like improvisation. He was exploring the scenario, and I could help him explore. Sometimes I repeat my responses exactly, sometimes I vary my questions and see if there is anything more we can discover, I do this until he is satisfied and he will move on. There is always a reason that someone says something. Sometimes we can’t know what that reason is, but often we can. In all situations the person repeating can gain some satisfaction that the scenario has been explored, that the perceived need has been met and that they have been able to express what they wanted. This can take time. In our rehearsals it can take hours, days even. So imagine you are researching a play, except this time, the story has already been lived and you might be the one who can open that up for your loved one again, even if only for a time, you also might learn to see it in a way you never have before.

Obviously it is easy to write about redefining the rules and refusing embarrassment, but in reality it is harder to do. We’re not saying that the challenges are any less but at least if we are able to relieve some of the stigma by re-imagining the rules, some of the strain might be relieved and carers and people with dementia might feel a bit more confident about being out in public and being themselves. I was with a friend and her toddler at the weekend. The toddler had a tantrum and lay down on the floor of the post office. My friend was embarrassed and was trying desperately to calm her child and stand her up. One of the ladies in the queue turned to my friend and said ‘You should lay down on the floor with her, she’ll be so stunned she’ll stand up.’ All the other people in the queue agreed and my friend stopped being embarrassed because they understood and gave her permission to re-imagine the rules of social convention to deal with the challenging situation. The behaviour and solutions will be different, but it is this level of understanding that we want to see the public displaying towards people with dementia.


 

Bright Shadow’s Experiencing Dementia project has led to the creation of ‘Mrs Minteeda’s Marvellous Mind‘, a creative and interactive installation that aims to help members of the public to understand what it might be like to experience dementia and be empowered to make their communities dementia friendly. You can see this installation at the Ashley Shopping Center, Epsom on the 5th & 6th September. This project has been commissioned by Surrey County Council as part of their Dementia Friendly Communities programme.