The Patterns of Perception in Parkinson’s disease (PoP-PD) project involved four main stages:

Creative workshops

• Through creative workshops, people living with Parkinson’s and their loved ones had the opportunity to share their thoughts and experiences around discussions about dementia in Parkinson’s.
• They 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. See more here.
• These workshops were designed and facilitated by artists, Anne Marr and Ruairiadh O’Connell, at Central Saint Martins.

Co-development of information resources 

• Insights captured from the workshops formed the basis of a pair of information booklets – one for people living with Parkinson’s and one for healthcare professionals – to open up conversations about Parkinson’s dementia.
• These booklets were then co-developed further in focus group sessions with people living with Parkinson’s and healthcare professionals.

Wider Consultation

• Once the draft booklets were developed, we shared them with the wider Parkinson’s and medical communities, for their review and feedback.
• This consultation phase allowed us to get input into the effectiveness of the information resources and then modify them to be as beneficial as possible.

Embedding the toolkit within the public domain

• Once the booklets were finalised, we launched an awareness campaign together with Parkinson’s UK to share the booklets with the Parkinson’s community.
• Both booklets are embedded within Parkinson’s UK’s information and support resources for people living with Parkinson’s and healthcare professionals.