FUTURE
From research to stage and screen
Portraying Dementia Authentically
Dementia now affects people in many ways, either by being diagnosed with it yourself, knowing someone who is living with it, or knowing someone who has passed away from it.
Our Centre for Research in Ageing and Cognitive Health (REACH) are leading on multiple projects to conduct research that helps to improve the lives of people living with dementia.
One of the projects supporting this is IDEAL – Improving the experience of Dementia and Enhancing Active Life. IDEAL focuses on people living well with dementia and hearing their stories by completing interviews made up of multiple questionnaires across the UK. Since 2014, the project team have carried out 10 years of research focusing on identifying what can help to maintain or improve well-being and quality of life.
Dr Catherine Charlwood, IDEAL Research Translation and Impact Manager, concentrates on communicating the research. One of the resources Catherine helped create since joining the team in April 2021 is the Living with Dementia Toolkit. The toolkit aims to give people hope for the future, inspire people through real life experience and offers ideas to help people live their lives as they choose. The toolkit was born through a co-production team of people with dementia, carers, and researchers, who all met over an extended period of time to bring it to life.
Catherine said: “The co-production process was fundamental, and a large part of the success was because people living with dementia were able to input their suggestions based on real-life experiences. They helped choose the colour pallet, the design, the logo, and understandably, it makes more of a difference to others living with dementia to see and hear information from someone who is living a parallel existence to you.”
Find out more about the toolkit here:
“...a large part of the success was because people living with dementia were able to input their suggestions based on real-life experiences.”
Catherine spoke about what sort of work is happening within the project to help the community and she mentioned how a film put together by the IDEAL research team has had a huge impact. In January 2022, The World Turned Upside Down was a play that was staged in Exeter which highlighted the communication around dementia. The play was all about human interactions and situations involving individuals and their family members, or individuals and healthcare professionals, where the outcome relies on what is communicated, and how.
This wasn’t just a standard play; it was acted out using forum theatre. Forum theatre is a type of drama that encourages audience interaction and explores solutions to social problems. You improvise a scenario, you stop the actors, you ask the audience what just happened, why it happened, and then from that, the actors play the scenario again with the input from the audience. Working with a steering group, as well as people with dementia and carers, the project team chose some key scenarios where the outcome could go one way or another depending on how the people communicate with each other.
The play, and the process behind it, was filmed and freely released on YouTube, and the film has had more than 6,000 views.
Audiences were clearly moved, with feedback that it made people realise that “‘care’ is a word used too flippantly”, or “how easily you can judge from the outside without understanding personal circumstances.”
Following from the success of the film, the team received a grant to create an opera about the experience of living with dementia called The Bridge. The music was composed by Dr Edward Wright and the libretto written and production directed by Marian Bryfdir. The purpose of The Bridge is to help you think about the people, the conversations and the relationships which help to shape each individual life.
We asked Catherine why research like this is so important and she said: “It is incredibly difficult for people to express what they’re feeling when they receive a diagnosis of dementia, and one of the things that comes up time and time again is focusing on what people living with dementia can do rather than what they can’t do. IDEAL seeks to even out understandings of dementia by considering what can be done instead.
“I feel incredibly privileged to have worked with some amazing people, not only to broaden the focus on possibility but to also allow an important and large group of people a voice. There is a population that live within our communities who have dementia, who still want to be part of community social life, and they deserve that, and I think that’s why projects like IDEAL are really powerful.”
Find out more about IDEAL here:
The World Turned Upside Down can be watched online:
