Rewriting the story of dementia.
words – rachel arthur
“My words aren’t my own anymore; people are forever filling in my blanks and telling me what my dementia is, or looks like. I’ve lost the power to tell my own story and it’s awful and frustrating and I’ve had enough.” STAND member Irene Donaldson.
Our work to date has uncovered a mass challenge – those living with dementia feel their voices are not heard in their own words, as part of a global narrative, and want to change this. Their families, friends and carers too often have to watch this problem play out, unable to affect matters. The general public are largely unaware of this entire discussion, leading to a disconnect within our societal structure and how our world is experienced by those living with dementia.
We have recognised we have a unique opportunity to share the true experience of dementia with a wider audience: educating and increasing empathy in those previously unaware of the effects of dementia and how it impacts the people they interact with every day. Over 850,000 people in the UK are living with dementia; this figure is projected to rise to 1.6 million by 2040. As dementia’s prevalence grows apace, many of us are unequipped to deal with the effects of this until it is too late: the finale of our work to rewrite the story of dementia is a mainstream route to raising awareness of dementia amongst the wider public.
“Legacy” is a project that seeks to provide a route for those with lived experience of dementia to creatively explore and communicate their story in an innovative and empowering way – via the medium of an experimental ink we’ll use to create a physical manifestation of the degeneration of the brain during the dementia journey, presented factually, sensitively and appropriately.
We plan to create a unique mainstream publication, which will take the true story of living with dementia into spaces where it is not normally encountered: bringing the reality of dementia and the surrounding conversation to new audiences.
Contributors and participants with lived experience of dementia will be our collaborators, involved at every stage of the process: their message conveyed through content and form, as an ongoing resource. Our work to date has identified an overwhelming issue the community faces – too often, their story is never shared outside of those directly touched by dementia. Due to this, the true experience of dementia is rarely understood at a mass level, leading to a lack of understanding and empathy of the experience and its impacts.
We will co-host production workshops throughout the project, with participants who have lived experience of dementia across generations: exploring how the various forms of dementia can be manifested visually in the publication, and how we can represent the unique experiences of those undertaking their own dementia journey. At the same time, these discussions will provide creative stimulation, peer support, and increased mental and emotional wellbeing for participants – who often feel their voices are sidelined, misunderstood, or simply dismissed.
This work will form the final instalment of our community project to rewrite the story of dementia – directly funded by our boom saloon members, who pay £7.99/ month to enable our community projects. In thanks, our members enjoy a series of exciting membership benefits. Become a boom saloon member here and support our work to use creativity to inspire and empower those facing challenges.