Patterns of Perception PD

University College London, Queens Square Hospital, UAL: Central Saint Martins - Anne Marr, Parkinson’s UK and Wellcome Trust.

POP-PD aimed to explore fears and concerns associated with discussing dementia within the Parkinson’s community, and to co-produce a pair of booklets to support dialogue and awareness of Parkinson’s dementia and improve care and support.

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.

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.