Dr Rimona Weil – Excellence in Public Engagement Award 2023
Dr Rimona Weil was awarded the Excellence in Public Engagement Award at the Department of Imaging Neuroscience’s 2023 Public Engagement Awards.
People living with Parkinson’s are more likely to be diagnosed with dementia compared to those who do not. Despite this, Dr Rimona Weil finds that those working in the Parkinson’s community avoid having discussions about dementia due a perception that “there is nothing that can be done about it”. In addition, people living with Parkinson’s and their loved ones often find it hard to talk about dementia, in part due to the taboo of dementia itself.
However, there is often lots that can be done to prevent and slow the progression of Parkinson’s dementia. In response to this disparity, Dr Weil was inspired to work with the Department’s Public Engagement team to develop a project to challenge these perceptions.
The resulting project – Patterns of Perception in Parkinson’s Disease – has seen Dr Weil work alongside lived experts, artists at Central Saint Martins and Parkinson’s UK. Funded by a Wellcome Research Enrichment Grant, the project set out to create new information resources to open up these conversations. The project builds on from the previous award-winning project: Patterns of Perception.
As well as working with people living with Parkinson’s and healthcare professionals to co-produce the final resources, Dr Weil worked with artists Anne Marr and Ruairiadh O’Connell to design and lead creative workshops. The thoughtful design of the workshops allowed participants to feel comfortable to share their experiences and encouraged a system of two-way learning between the research team and lived experts.
By opening up conversations about dementia, Dr Weil and the team were then able to co-develop a clinical tool to enable discussion of dementia between professionals and people with Parkinson’s and an accessible booklet for people living with Parkinson’s and their families.
Once complete, the resources will replace Parkinson’s UK current information on Parkinson’s dementia.
Dr Weil is passionate about including the voices of lived experts throughout her research. Outside of the PoP-PD project, she includes a patient representative as part of her research steering group, who feeds into research design and helps to improve the experience of future participants. Collaborating with Rare Dementia Support funded by the charity The National Brain Appeal, Dr Weil also founded and leads the Lewy body Support group. The group provides education and support for people living with Lewy body dementia and their carers.
On winning her award, Rimona said:
Thank you for this award, which I am very excited about. The Patterns of Perception in Parkinson’s project has been so wonderful to work on. I’ve learned a huge amount from the Public Engagement team at WCHN, especially from Jo and Cassie and the rest of the team. With them, we were able to work with people with Parkinson’s and their families, as well as artists, and Parkinson’s UK and deliver creative workshops and focus groups to co-produce toolkits about Parkinson’s dementia. Through this project, I hope that we can make a meaningful impact and open up challenging conversations about dementia in Parkinson’s.
Congratulations to Rimona!
We look forward celebrating the launch of POP-PD alongside Rimona in July 2023.
You can read more about the awards here.