This public engagement funding scheme is part of Alzheimer’s Research UK’s work to tackle misconceptions around dementia and promote the importance of dementia research.
In 2019, we funded eight projects through the Inspire Fund, totalling £98,974. The criteria for projects funded through the scheme in 2019 were to:
- Inform the public about dementia, including challenging misconceptions.
- Build awareness of dementia and ignite action for change.
- Engage and inspire the public with the progress being made in dementia research.
Beautiful Brains: An Insight into our Inner World
Dr Lizzie Burns set out to engage young people through creative classroom sessions in which they would explore the brain and how it is affected by dementia. She created three different sessions tailored to different age groups, and worked with schools in and around Oxford to schedule her sessions.
She held the first session in February 2020 with Year 5 students, giving them the chance to learn about the brain and what different areas do. They created artworks capturing what they learned and took information and activities home with them to share with their families. With the subsequent closure of schools and the switch to online learning, Lizzie adapted her project to make her resources available for teachers to use in the classroom, whether in person or online. She has also established links with teachers and is working with them to promote and disseminate these resources to teachers.
Visualising dementia research through colouring pages and zines
As an artist and science communicator, Hana Ayoob’s project is all about using art and creativity to bring dementia research to life. She spoke with a range of dementia researchers, finding out about their research and motivations for it. From this she created colouring pages and profiles of the researchers, making them available as individual pages or as a booklet. She also developed training materials for researchers to learn about zines (self-published magazines) and use this format to communicate about their own research. Due to the pandemic, she adapted this training to be delivered online in a self-paced format, providing guidance and support to those taking the training.
This project is a collaboration between Dr Sarah Naomi James, a dementia researcher at UCL, and Rachel Briscoe from creative studio Fast Familiar. They created The Window, an immersive audio experience that weaves personal experience of dementia with themes of hope in research. Using binaural sound, the story explores family relationships, asking questions about what we inherit from the past and what control we have over the future. They adapted their plans for in person performances to an online format, and received positive feedback from listeners. With restrictions easing, they are looking to take the experience to festivals and share it with a wider audience and spark conversations.
“A beautiful piece of audio narrative that gave me space to gently explore something more than half of us experience but don’t discuss” – No Proscenium
Using social media and machine learning to identify and change dementia misconceptions
In his project, Dr Sagar Jilka has been examining attitudes towards dementia on Twitter, designing a machine learning algorithm to analyse posts and identify themes of stigma and misunderstanding. He has been working with people affected by dementia to pinpoint which misconceptions to tackle, and was able to move these meetings online and continue their work despite lockdowns. Together, they have identified common dementia misconceptions, and co-produced a targeted awareness campaign to build people’s understanding of dementia and point them towards trustworthy sources of information about the condition. The campaign ran online at the end of 2020, and the group are now analysing their results.
Little Red Door
“My father, who has Alzheimer’s, turned to me once and said, “Can you see that little red door?”. There was no red door, but rather than correct him I asked, “What’s beyond the little red door, Dad?”. He animatedly told me all that he could see - in that moment my dad was still very much alive and present. I realised that, rather than continue to deny his perception of reality, maybe I should take some time to enjoy and understand it? After all, reality is personal to each and every one of us.”
Sondertide productions have been writing and developing a play exploring the theme of imagination and reality in dementia. Drawing on their own personal experiences of dementia, they’ve been asking the question “what’s real and what really matters?” While the pandemic has disrupted and delayed plans for rehearsing and developing the play, they have worked with a dramaturg (a theatre literary editor) to further develop their draft script. They’ve also produced a series of podcasts called The Dementia Adventure, in which they spoke to people with a variety of dementia expertise, including people with dementia, scientists, therapists, and carer support services. The podcasts have been really well received, with over 2,000 downloads, positive reviews and a rating of 4.5/5 stars on Apple Podcasts. With theatres opening back up, the team are reigniting plans to show their play to theatre makers and experts, with the aim of it being commissioned for wider public performances.
Dementia awareness and prevention in the Chinese community
In their original plan, Bristol & Avon Chinese Women’s Group were to deliver a series of 10 events with the aim of increasing the knowledge of the Chinese community around dementia and helping people establish lifestyle habits to look after their brain health. The event series began in November 2019, and four sessions were delivered, each with between 20-40 attendees from the community. The sessions were a combination of talks and workshops, including healthy cooking and tai chi. Due to the pandemic, in person sessions were initially postponed, before being delivered online to community members. The Group supported people to get familiar with the technology, and helped to keep the community connected during the lockdowns. With restrictions easing, the Group hope to be able to hold their celebration event in person over the summer.
Dementia with Lewy bodies animation
Simon Ball is an animator who has been creating a short film to shed light on the vivid hallucinations experienced by people with dementia with Lewy bodies (DLB). He began by interviewing people with DLB and their loved ones, recording their stories about their experience of hallucinations, what they see and how they make them feel. Loved ones and carers involved with the interviews report that being involved has helped to build their understanding and empathy for their loved one with DLB and the symptoms and challenges they face.
At each stage of his development process, Simon consults with doctors and people living with DLB to gather feedback about the animation and shape what he creates. Fortunately, he had gathered the audio recordings before lockdown began, and has been able to continue to edit them and develop the animation visuals. The film is called Another Presence, and is in the final stages of development ahead of release.
Brain Banks, Expand Minds
Founder of MindTorch, Dr Elizabeth Adelodun, used a hands-on approach to inspire and inform students and young people from disadvantaged backgrounds about neuroscience and the important role of dementia research. She planned workshops to take place in Brain Bank facilities across the UK (London, Newcastle, Oxford and Bristol) in which students would have the opportunity to visit the brain banks and hear from researchers at the cutting-edge of dementia research, learning about research progress and how to develop a career in science. Some workshops were delivered before the UK entered lockdown, but the remainder couldn’t take place due to restrictions in place. Students who took part had a greater interest in pursuing scientific studies and careers, and also reported an improved understanding of the biology of dementia.