Rewriting the story of dementia: a photo story
To document our work to date, we look back over our latest, greatest community project through the photography of Kajsa Wingerup
Our work to rewrite the story of dementia began as so many of our community projects do, with a simple conversation. The story of a grandfather diagnosed with Alzheimer’s, caught early and supported by a family with medical backgrounds to live independently at home. Regular visits confirmed his mind was still sharp – multiple family members watched him complete his daily crossword as he had done throughout his life. In under six months, however, he had passed away. It was only when clearing out the family home that stacks of newspapers were found and, for the first time, anyone looked close enough to realise the same word had been written over and over again.
Dementia is currently the leading cause of death in the UK. At a time when 1 in 2 of us will be affected, many of us are unaware of the facts until it is too late. Further to this, the mainstream media’s narrative of the dementia journey remains flattened and one dimensional – focussing solely on loss and incapacity as opposed to the full spectrum of experience of those living with dementia. Within this landscape, we collaborate with people with dementia and, together, play with words to give voice to their experience. We then share these words across our print publications, online features, newsletters and events – centring lived experience and using this to increase empathy and understanding in wider society.
Our most ambitious project to date, this work encompasses four parts – begun in the thick of lockdown and culminating in a world first, unique publication to bring together our many year’s of experience and insight. This photo story shares further insights into this vital work, made possible thanks to the support of our members. To help us continue to rewrite the story of dementia, please join us as a member here.
PART ONE: THE OTHER SIDE
From: boom saloon admin
Sent: 28 September 2020 16:33
To: Ruth Mccabe
Subject: SPAM (SPF) – boom saloon
Dear Ruth,
I hope this finds you well in these unsettling times and it’s OK to get in touch. My name’s Tara and I’m the Project Coordinator of boom saloon, a non-profit movement to democratise creativity for good. As part of this, we facilitate an ongoing series of community projects which use creativity to inspire and empower, building upon the methodology of Asset Based Community Development to collaborate with a range of communities.
During these challenging times, we want to use our storytelling skills to provide a supportive space for families and those living with dementia to come together and share new experiences via a series of free creative writing workshops, led by poets and writers from our talented community of creatives.
We feel it is more important than ever to provide a means of connection, a creative outlet, and levity in this time – something we hope this project can support. As we develop the framework for this, we wanted to reach out to see if you’d be open to hearing more about our plans and any potential crossover with your STAND group members.
Would you be open to discussing this with myself and our founder/project lead Rachel Arthur?
Let me know what you think and we can go from there.
Tara
"I have 4 definite for getting involved. Irene, Fiona and Aileen are very keen as is Gerry who couldn't be on the call today. I'd be very interested in being involved too if that was allowed." – Ruth McCabe
When the grey mist descends,
Its not easy to comprehend
My heads in a vice like grip,
Slowly squeezing, applying pressure,
Numbing my senses and feelings.
Makes me want to close my eyes
And blank out the world around me.
The only ones who truly understand
Are those who dance to the same tune
Can you feel all my frustrations inside
As I hold back the flood of emotions
And look to find peace and salvation
From these demons that hold me down.
Breaking up my thoughts into a thousand
mixed up pieces, just like a jigsaw puzzle
that has lost the cover to its box which explains
Why I can no longer see the whole picture
Left in silence as language slowly leaves me
And our moments in space and time slowly slip away.
If I break down will you comfort me
Help me to remember things differently
To live for those moments and memories
That I can no longer put into words
Help me to embrace those feelings
As this disease erases all my emotions
That makes us all feel so human. – Gerry King
Date: Tue, Nov 10, 2020 at 8:53 AM
Subject: Re: SPAM (SPF) – Re: SPAM (SPF) – Re: SPAM (SPF) – Re: SPAM (SPF) – Re: STAND
To: boom saloon admin
Cc: Margaret Simpson (NHS FIFE)
Ruth
"I have poems in my head. I need help to write them down on paper." – Audrey Ross
Aim high. Reach for the stars
And keep both feet firmly on the ground!
Always remember how you started.
A comic idea to the young girl on her dads knee
Giggling pictures of elastic legs and arms.
Anchors for feet.
Yet his words felt safe.
And sure.
And somehow real!
As the world opened her mind grew
The stars appeared bright, promising, out of reach
Dreams and ambitions nursed and nurtured, unspoken yet shared.
Encouragement sparkled dispersing the clouds of doubt
Love, generosity and hope propelled her forward, rocketed her on.
The stars now within reach.
The new galaxy was beyond imagine.
Bright, bold, beautiful.
Without limit.
Wee girl comic visions faded
Sophisticated promises of profit and passion and power took shape
Their pull strong and powerful
Promises of a better life tearing her feet from their roots in the ground.
Sacrifices were demanded, life ties to be severed
Criticism and comparisons drawn
Prejudices and equalities battled.
Surely she thought there’s room in the galaxy for all sorts of stars?
Yet reality dawned like the sun each morning
Some stars sparkle bright showering and sharing their beauty
Creating new hope and life in their wake
Others burn out and fall in invisible dust loved momentarily
Then forgotten.
No roots.
No growth.
No future
The woman sits with a child on
her knee
A smile on her lips
And a heart filled with love
She knows this:
It’s the heart and mind that are the stretching, bending, flexible limbs
Folding around our hopes and dreams.
The roots of love and loyalty, compassion and tradition reach deep
They anchor us
Not heavy and limiting
But safely.
Securely.
Far reaching.
So she tells her child
Aim high. Reach for the stars
And keep both feet firmly on the ground. – Irene Donaldson
"OMG! It's Ed Shearan!"
PART TWO: WORD PLAY
Good afternoon,
Thank you very much for signing up to our ‘Community and Dementia: Creating Better Lives in Fife’ conference, which will be held on Thursday 25th February between 10.00am and 1pm.
We look forward to welcoming you on the 25th. If you can no longer attend this event, please just let me know.
Kind regards,
Berengere Chabanis
Communications, Digital Media & Events Officer
Life Changes Trust
from: Ruth McCabe
to: Rachel Arthur, Gerakd King, Irene Donaldson, Aileen Aitken
date: 5 Apr 2021, 11:06
subject: Booming Dementia Proposal/Project Plan
Good morning everyone!
Happy Easter Rachel! I hope you had a good weekend.
Here is the first draft of a proposal/project plan for our BOOMING Dementia resource.
It clearly needs a lot of work from all of us.
I can meet this Thursday at 1030 as usual if you can.
I’ll look forward in hope this may be possible.
Take care
Ruth
The Way Forward
In view of the fact that only 3 members of STAND were able to engage meaningfully with this opportunity GK, ID and BOOM Saloon are very keen that other people affected by dementia have the chance to participate in the process. It is their belief that the material and process has added significant value to their lives and that being involved could do the same for other people. They also believe the process would be of value to other vulnerable people.
I’ll get a quote from Audrey to put in here – why she struggled to engage. The resource could be accessed by individuals. It could be accessed by individuals supported by family and friends. It could also be used by individuals supported by workers. It could be utilised in domestic homes, community settings and in residential care.
They would like to create a resource that can be accessed in a variety of mediums including paper, links on websites, a PDF electronic version and possibly in an APP format.
Partner Organisations which would be likely to market and make the resource available include DEEP (The Dementia Engagement and Empowerment Project), TIDE (Together In Dementia Everyday), Alzheimer Scotland and their partners including the University of the West of Scotland, Edinburgh University, SDWG, NDCAN and Brain Health Scotland, the Fife Health and Social Care Partnership, Life Changes Trust, Arts in Dementia, The National Meeting Centre Movement based at Worcester University, The Dementia Services Development Centre, The Focus on Dementia Team (part of Health Improvement Scotland), Young Dementia UK, Scottish Care, COSLA, The Alzheimer Society, Alzheimer Research UK.
The funds that would be required to support the resources are:
Creation of a Paper Resource – collation, design, layout and illustrations (I think we should build this in – could Gerry do some????? I imagine a picture of his tree!!!)
Rachel to give an idea of costs for this – An outline of a resource can be found at Appendix 1
Printing and distribution of a paper resource – Rachel on this too!
“Hi Rachel
I hope you are doing OK. I’m going out for lunch then coming back to do your workshop. A perfect day for it as the weather is so awful.
I think STAND has raised enough matched income to secure the Life Changes Trust Legacy income that we applied for last year. There is cash included in that to take the BOOM Saloon project forward.
The Life Changes Trust are holding a seminar to announce the grants. It’s on Thursday the 24th February from 1030 – 1230. I thought you may want to put the date in your diary in the hope you can celebrate with us.”
“Hi everyone,
Just a VERY quick message from me to say a huge huge congratulations to you all for securing the Life Changes trust funding – couldn’t be more deserved. Chuffed to bits for STAND!! So delighted and can’t wait to see you all soon 🙂
Take care and big celebrations coming soon xxxxxxxxxx”
We continue.
PART THREE: IN THE PALM OF A SPIDER'S HAND
from: Verena Hahn
to: Cindy Schramm
cc: Rachel Arthur
date: 20 Mar 2024, 13:24
subject: Book application for drupa
Hi Cindy,
I would like to introduce you to Rachel Arthur from Boom saloon (https://www.boomsaloon.com/).
You probably remember that I told you about Rachel’s (and her team’s) great work about the topic of dementia. Claire from the NSO UK will provide a printer to Rachel so that she can print her poetry book with disappearing ink.
In addition, we could use this book / a new book with more peotry for your product line with standard ink at drupa as live application and print sample. Rachel would like to get a certain amount of books for her to keep and distribute.
Could you please get in touch with Rachel to discuss how the book should best look like? We said mostly text, some images, text could be in colour, too (?), which format, what type of paper you suggest, softcover or hardcover, when do you need the final print file latest, etc.?
Thanks!
Kind regards,
Verena
Alzheimer’s is….
Like walking on still waters
Laced with rough skinned crocodiles
Patiently waiting for endless ripples
My eyes fixated on their smiles.
Enticed into a feeding frenzy
Tearing flesh clean off my bones
Until they’ve satisfied their hunger
And every piece of me is gone.
Alzheimer’s is….
Like a peaceful Venus fly trap
Bathing in the tropical sun
Calmly waiting for a gentle touch
In a flash the trap is sprung
Slowly and gently cradled
Vice like bars squeezing my breath
Enveloped in a shroud of darkness
Leading to a long and lingering death.
Alzheimer’s is….
Like a high flying spider
Floating gently on the breeze
Looking to spin its deadly Web
High amongst the branches of trees.
Its soft and silky Web of deceit
Spun from its body strand by strand
Drained of life inside a silken tomb
Held in the palm of a spider’s hand.
My Shoes
You walk within my footsteps
We wear the same shoes, you and I.
Although our paths may differ
At journey’s end we both shall lie.
Our footprints forge impressions
As we stride across the sand.
In these ever changing times
We walk together hand in hand.
As waves sweep gently on the shore,
Our footprints slowly washed away.
No trace of us is left behind
As the sun sets on another day.
When darkness turns the day to night
Grey shadows cloud my mind.
Fading memories of impressions made
Of our footprints left behind.
So I look towards the break of dawn
As swathes of light embrace the land.
Night shadows banished, washed away
As we forge new footprints in the sand.
PART FOUR: BLUE BINS
Written during a series of workshops with boom saloon in January 2025, what follows is a selection of life advice from various members of STAND. At times poignant, at times comical, it reflects the individual personalities and quirks of this eclectic group.
May it bring a dash of helpful advice to your life.
Live a positive life;
fill it with memories. Sometimes it feels like
it gets blown away,
so engage with others
and hold it dear.
You canNAE take it in your shroud!
See your grandchildren;
eat millionaires shortbread;
read.
Swim.
Take a long lie
in a cosy bed.
Wear comfy clothes,
spend time with friends,
do puzzles.
Give everything
a second chance.
Keep the blue landfill bin
as empty
as possible.