A Scottish publisher has announced that they will begin publishing books written by authors with dementia in a world first.
Edinburgh based social enterprise Boom Saloon will become the first in the world to establish an imprint dedicated to producing books written exclusively by authors with Alzheimer’s, in an effort to raise awareness for the disease.
The books published by Boom Saloon will also use disappearing ink, with text on the pages eventually fading to nothing to symbolise how people living with the illness feel.
How long the ink stays on the page is up to the reader. Each book will be unique in how it fades over time intended to mirror the unpredictable progression of dementia.
The ink's reaction to air and light ensures that human interaction will influence the longevity of the text, underscoring the importance of social connections in the lives of those with dementia.
As well as being on sale to the public, copies will also be sent to politicians and other decision makers to raise awareness of Alzheimer’s and to encourage them to take more meaningful action to support people with dementia.
Rachel Arthur, founder and editor of Boom Saloon said the aim of the project is to publicise a widespread lack of understanding about the real impacts of dementia and show how people with the illness can be ignored by society.
She said: “This approach intends to empower these individuals, by showcasing their talents and contributions, shifting the focus from loss and limitation to potential and ability.
The first two books to be published include a poetry collection by Gerry King, a former technical architect diagnosed with young onset dementia, and another by Maggie Watson, who was diagnosed with mixed dementia during the first Covid lockdown.
King was diagnosed with young onset Alzheimer’s disease at the age of 55 and had to give up his career, social life, and even the ability to do basic tasks.
He was forced to surrender his driving license, lost touch with friends, and retired from his 40-year career in architecture on ill health grounds.
Despite his dementia diagnosis. Gerry became a published poet and created meaningful change in his life, says Rachel Arthur.
She added: “Projects like Gerry's poetry book, aim to present works by individuals with dementia not solely through the lens of their condition, but as standalone pieces of creative expression. This shift in representation seeks to challenge and change public perceptions, fostering a more inclusive and accurate understanding of dementia.”
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Mr King said: “The content of my book has come about from the diagnosis and how it has made me feel…the anger and frustration of experiencing life in a different way.
“My writing has allowed me to put some of my feelings down on paper and, in turn, it has helped me to accept my diagnosis.
“It shows that a person living with dementia is still capable of contributing to society in some shape or form and, at the same time, dispelling some of the myths and stereotypes that people with dementia can't, when actually they can.”
Watson’s book – funded by Age Scotland through its peer-to-peer group – is a "living recipe book" showcasing her life and the progression of her dementia. It uses old handwritten recipe books and includes anecdotes, stories, and actual recipes.
In its mission to raise awareness and empathy for people living with dementia, the new imprint also aims to tackle stereotypes surrounding the disease and say Gerry is the perfect case study.
It coincides with research at the University of Edinburgh into the media's portrayal of dementia, spearheaded by researcher Nichole Fernandez, which analysed thousands of media representations and found a pervasive pattern of misrepresentation.
The research highlights that people with dementia are rarely depicted alone or engaging in active pursuits. Instead, they are often shown seated or lying down, with their faces obscured or turned away.
Caregivers, predominantly women, often feature in images, reinforcing stereotypes and limiting public perception of the dementia experience. This misrepresentation fosters a narrow and often bleak view of dementia, overshadowing the diverse realities and potentials of those living with the condition, according to the research.
Boom Saloon is now sending copies of the books to policy maker, city planners and activists as they continue to seek support for the campaign.
They’re seeking people to support them through individual and corporate memberships, to fund the next stages of the project
The project has already made an impact, with an initial pilot launch at the Dementia Arts Festival in Inverness and distribution of an earlier publication across Fife.
Boom Saloon is committing to commissioning and featuring a person living with dementia each month across its platforms. The content won't be limited to dementia-related topics and aims to showcase individuals' diverse interests and experiences.
To buy books written by authors with dementia, and for more information on how to support Boom Saloon's work, visit its website.
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