People living with Parkinson’s are more likely to develop dementia than the general population. However, people living with Parkinson’s and their loved ones often find it hard to talk about dementia due to the taboo of dementia itself, and a lack of awareness of the support and guidance available. Healthcare professionals can also avoid discussions about Parkinson’s dementia in clinic, due to a perception that little can be done, a lack of training and/or concerns about negative reactions from patients.

Dr Rimona Weil, Neurologist at the National Hospital for Neurology and Neurosurgery, UCLH and Neuroscientist at UCL, and UCL’s Department of Imaging Neuroscience’s Public Engagement team were inspired to challenge these perceptions, and respond to this problem through a research engagement project. Together, they launched Patterns of Perception in Parkinson’s disease (PoP-PD). With Central Saint Martins and Parkinson’s UK, they set out to co-produce a pair of booklets to support dialogue and awareness of Parkinson’s dementia and improve care and support.

The first phase of the project aimed to explore the fears and concerns associated with discussing dementia within the Parkinson’s community. Through a series of creative workshops at Central Saint Martins, led by artists Anne Marr and Ruairiadh O’Connell, the team brought together people living with Parkinson’s and their loved ones. Participants explored their associations with Parkinson’s dementia, how they would like to learn about the risks, and what excellent support throughout the process would look like.

Insights captured from the workshops formed the basis of the two information booklets. They were then co-developed in focus group sessions, with lived experts and healthcare professionals from across the UK working in a range of clinical settings.

The resulting pair of booklets – designed for people living with Parkinson’s, and healthcare professionals – have been adopted by Parkinson’s UK as their official resources on thinking and memory changes in Parkinson’s, which will enable them to reach many people living with Parkinson’s and those working in the Parkinson’s community.

Both booklets were launched at an in-person event with project collaborators and participants in July 2023 at Central Saint Martins, London, and via a digital campaign, led by Parkinson’s UK.

You can read more about the project on these webpages, including a short film capturing the process of the project (produced by Gareth Johnson).

This project was funded through the Wellcome Research Enrichment – Public Engagement Fund.

This project builds upon the successful outcomes from a previous Patterns of Perception collaboration. In 2020, the earlier version of the project aimed to find better ways to dispel misconceptions about the experiences of those living with Parkinson’s disease through dance and art.