Patterns of Perception in Parkinson’s Disease (POP PD): Encouraging conversations about dementia in Parkinson’s disease through art

Alongside brilliant partners, the Department for Imaging Neuroscience has recently delivered a series of creative workshops with people living with dementia and their loved ones, to explore the topic of dementia within the Parkinson’s community.

Parkinson’s disease is often thought of as a disease that only involves movement. Yet many people with Parkinson’s may also develop Parkinson’s dementia. Despite this, professionals working with the Parkinson’s community are often hesitant or unsure of how to discuss dementia with people living with Parkinson’s.

To encourage and better enable these conversations, we launched a project to explore this topic, alongside colleagues from Parkinson’s UK, Anne Marr, a Programme Director at Central Saint Martin, Artist Ruairiadh O’Connell and project consultant, Moïse Roche. Across June and July 2022, we ran four workshops at Central Saint Martin’s School of Art. In the first two workshops, people living with Parkinson’s and their loved ones explored fears and worries associated with a dementia diagnosis, creating their own artworks inspired by Matisse’s paper cut-outs.

In the latter two workshops, participants shared their thoughts on how professionals should discuss dementia with people living with Parkinson’s, creating smaller cut-out shapes and annotating them to express when, where and how they would like to learn about dementia, and what excellent support throughout the process would look like. We placed participants’ cut-out shapes together to create a large collage capturing all the different viewpoints and experiences within the group. Both workshops were designed and facilitated by Anne Marr, and Ruairiadh O’Connell.

Based on each participant’s artwork and the discussions developed from shared experiences, the next stage of the project will involve co-developing an information toolkit to support those living with Parkinson’s and their loved ones, and a clinical toolkit to help healthcare providers to discuss dementia with people living with Parkinson’s. These toolkits will be co-developed with workshop participants, as well as the wider Parkinson’s and medical communities. We hope to launch these toolkits alongside an awareness campaign with Parkinson’s UK in 2023.

You can read more about this project here.