#project002.5: Word Play

Rewriting the story of dementia.
words – rachel arthur

The thinking behind Word Play emerged from our previous work with STAND, a peer support group for those living with young onset dementia in Fife, Scotland. We worked with STAND to enable those living with dementia to access support to share their lived experience – using words to rewrite the story of dementia in a person focused manner and removing the medical jargon which can create a barrier to understanding for so many. Produced during lockdown, we were forced to operate digitally and had become aware of the limitations and barriers created by having to operate solely online. Recognising the benefits of the work completed to date, we felt compelled to find a way to bring this to life in person – collaborating with those undertaking their dementia journey who were not able to join us online and required further support to put words to their lived experience.

STAND secured funding from the Life Changes Trust to further our work to date, beginning by running a series of in-person workshops which allowed us to bring our previous learnings to life: traveling to various locations around Fife to deliver in-person workshops which used creative writing to unlock the talents of those we had the privilege of collaborating with. Again, we brought together a selection of creative writers from our community to support as guest workshop leaders – showcasing the power of words and building connections with the groups assembled before supporting them to play with words to share their lived experience.

This next phase of our work to rewrite the story of dementia further highlighted the importance, and potential, of using words to do this. It is the experience of STAND members that when they were diagnosed with dementia they were “written off” by their families, friends and society. The stigma and fear that surrounds dementia means that people often delay seeking a diagnosis – meaning when they eventually do enter the diagnosis pathway, the disease process is significantly advanced which means activities are diversional and of a low-level therapeutic nature. STAND members believe that an early diagnosis coupled with the right support information and opportunities to continue to self-actualise means that they live better, for longer and with a slower progression towards more advanced disease. With this in mind, funding from Life Changes Trust was put to use to create a publication which allowed those we couldn’t reach one to one to benefit from the same experience as the members of STAND we had run workshops with to date – shaping a project perfectly placed to be part of a therapeutic toolbox that can add significant value to the dementia journey.

In collaboration with STAND, we produced a publication which supported people with dementia to play with words – providing them with a structure and a stimulus to inspire them to write creatively. Shaped around the workshops we had completed to date, along with the inputs of our experienced writers and STAND themselves, Word Play exists to improve care for people with dementia living at home or in residential care in the UK; to improve the quality of life for people with dementia and their carers; and to support the provision of meaningful activity for people with dementia in care homes, in their own homes or in the community.

To ensure that our outcome delivered to these needs, we applied rigour to our understanding of accessible design. We quickly identified through secondary research that this was a great undertaking, with only a growing number of applicable resources. Each element of publication design, often taken for granted, had to be reconsidered around its approachability, neutrality and clarity. It can sometimes be expected that to take accessibility into consideration, aspects of beauty are taken away from it. From education resources, to in-person questionnaires, we looked to see what elements can be considered further to find a balance. Some examples of this are, the earthy green informed by its apparent tranquillity for those living with dementia. Each shade was then dictated from a base colour, ensuring that appropriate contrasts were met to provide clear differentiation within hierarchy. The typeface Arizona Flare, provided by Dinamo, blends between serif and sans-serif. This creates a feeling of familiarity across demographics and will remain timeless from its contemporary cut. 

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