#project002.5: The Other Side

Rewriting the story of dementia.
words – rachel arthur

Produced during lockdown, #project002.5 aims to rewrite the story of dementia in collaboration with STAND – a peer support group for people living with younger onset dementia and their families and friends in Fife. Following a year of education and research, we came to appreciate the scope of such a challenge; with dementia so often misunderstood, it is a topic rarely explored by those not yet touched directly by its effects.

Amidst a landscape of promises of a cure, sensationalised headlines and inaccessible medical reports, we sought to tell the true story of those living with early onset dementia, in their own words. Drawing upon the global boom saloon community, we brought together a group of creative writers and poets from around the world to run a series of dementia friendly workshops to support the group to put words to their lived experiences. Working to increase connection and creativity at a time when so many felt more isolated than ever, the project increased accessibility to the arts and created space to enjoy new experiences as part of a group. The poetry penned during this time speaks to the potential of us all, fully realised when given the support and space too often unavailable.

“The time spent working with boom saloon was, for me, priceless. The workshops felt a bit like “therapy” as we were encouraged to explore our familiar worlds and our thoughts and feelings in response to this. I was able, in a safe and entirely supported atmosphere, to really examine some emotions I had kept hidden too long and was able to use these emotions to drive my enthusiasm and creativity and went on to pen some ideas and writing. Though not good by any standard, my writing was mine, written from the heart and I am proud to have achieved what I did. On a different level we were encouraged to travel from the familiar to the fanciful or fantastic and create a world and characters that we could explore and perhaps unwittingly tackle some unspoken fears. A truly liberating experience where Dementia bore no influence!

Dementia is often accompanied by the anxiety of what’s next and frustration of what can no longer be done. The boom saloon project brought hope, laughter, renewed self respect and a wonderful sense of collegiate working that, for me anyway, had been denied since my diagnosis. The magic of language and literacy in all its forms- fast flowing or faltering- was celebrated.”

The outcomes of the workshops have brought to light the potential for an additional resource which would allow others to benefit from the same support whilst simultaneously reaching a new audience with the rich, vivid words which tell the true story of living with dementia. Continuing our collaboration with STAND, together we’re fundraising to make this possible – with hopes to deliver a resource which will allow those living with dementia to benefit from the experience of the lockdown project and simultaneously spark the dementia conversation within a community less aware of the situation. If you’d like to help make this possible, please consider becoming a boom saloon member or making a one off donation to help fund this important work.

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If you enjoyed this article, please further support this work by making a one-off donation or becoming a boom saloon member. By doing so, you will further our ability to democratise creativity for good and join a global movement of those who incite genuine change.