The World Turned Upside Down: a Newton’s cradle of memories

A play which aims to give audiences a sense of what it’s like to live with dementia will be staged in Exeter this week. The World Turned Upside Down has been devised by Director, Paul Jepson, and inspired by the Improving the experience of Dementia and Enhancing Active Life (IDEAL) project, which aims to find ways to support people to live as well as possible with dementia, Tess Walsh (an Exeter College Film, English and Politics student) explains more about the project.

Newton’s cradle, for those of you who aren’t aware, is a pendulum frame of five silver balls, the end ones swinging out every time the opposite hits. It was created to demonstrate the conservation of momentum and the conservation of energy. But it is also a device which Keith aptly used to describe what his early experiences of dementia did to his memories: “every time something came in, it knocked something else out”.

This arresting metaphor arose in preparations for  “The World Turned Upside Down” – a play which will involve audience participation to give a real insight into life with dementia, which will be staged at the University of Exeter and Exeter Phoenix this week. The team were in conversation with the   to understand more about living with dementia and certain situations like the diagnostic process and support services such as memory cafes. The IDEAL project’s ALWAYs group is a collective of very different people: some live with dementia, some are or were carers, and all of whom are dedicated to dementia research and promoting better understanding of the condition.

This feeling was poignantly first evoked for Keith during his diagnostic process, a tiring, gruelling journey of assessments, concluding with an accurate, if challenging result. He recalls being “determined not to get the diagnosis of dementia” looking for a “pharmaceutical answer” instead, driven “to just get back to work”. Because unlike the majority of dementia patients, Keith had young-onset dementia, no smaller or greater a struggle, but one which caused the end of his career much earlier than he had hoped. He recounts how he was Headteacher of a school and an advisor to 23 Canterbury schools, and yet there he was at his diagnosis assessments forgetting the names of places and people the assessors had told him 5 minutes earlier, the pendulum of his memories swinging one in, one out.

When I heard his story, what struck me first was the thought “he was an ordinary guy”, in fact quite an intelligent one, too. Furthermore, when I heard he received his diagnosis in his mid-50s, the clock immediately started counting in my head: my parents are in their early and late 50s; my grandparents are both in their 80s; in fact, that’s only 30 odd years for me!

The disappointing element about my reaction is that it’s a first. Although, as mentioned in the previous blog, I have personally known people with dementia, but with them being well into retirement I was never so empathetic. I was sympathetic, felt sorrow for them, acted kindly towards them – but I didn’t understand their struggle, nor was I able to relate to their situation. Yet Keith’s journey shocked me, and I realised how easily we repress the true struggle dementia is for everyone who lives with it, just because many of them are elderly members of our community – how it takes a story like Keith’s to actually wake us up.

Truthful accounts such as these support the actors portraying the two characters within the play “The World Turned Upside Down” who are both diagnosed with dementia. Actor Steve Bennet portrays a man with young-onset dementia struggling with issues like his job, his children and his mobility – all of which many middle-aged people take for granted. Portraying a person with young-onset dementia requires a theatre style like forum theatre (where the audience can get involved in the action and suggest other ways to behave) so as to emulate the truth of the situation rarely talked about or portrayed in the media. Even within the dementia community, systems like memory cafes, the tiring diagnosis process, even the increasing need for care and support are much more accommodating of retired people and the elderly members of our community who also live with this condition.

Though, much like Keith, most of our memories come and go like the spheres at the end of Newton’s cradle, many of us will have never experienced the mental sensation of dementia – however, in the fight to help those experiencing it we must understand it, a the core aim of this play.   Through the dramatisation of diverse experiences of those living with dementia and their carers, people with little experience or understanding of the condition can gain some insight and broaden their views. As we have learnt from the last few turbulent years, many of our sections of society which are not given a voice or understood, are isolated from communities and society as a whole – this negatively impacts people with this condition, both mentality and physically, and rids our community of diversity that makes our society complete.

To further tackle this issue “The World Turned Upside Down” is being performed at a range of venues: the University of Exeter, Exeter Phoenix and Exeter College also, to reach a diverse audience with an emphasis on a range of ages. If a young person like myself was more powerfully impacted by someone like Keith’s experience, it is especially important that other young people who also go to the College can access this performance to hopefully gain a deeper understanding of an issue very much absent from most young people’s agendas. A documentary film of the process will allow the play to reach an even wider audience beyond the live shows.

Hopefully, the creative team behind “The World Turned Upside Down” can express the members of the ALWAYs group’s lived experiences to educate (and entertain) much of the general public too – so it doesn’t have to take a story like Keith’s to awaken the wider public to a deeper empathy of living with this condition.

Watch a short video about The World Turned Upside Down here: https://www.youtube.com/watch?v=9su4to1y5d8&ab_channel=IDEALProgramme