ION-DRI Programme


Translation in Action: Exploring fears about dementia in the Parkinson’s community

We hear from the researchers who are working to translate neuroscience discoveries into ground-breaking new diagnostics and therapies for people living with dementia and other neurological conditions.

Dr Rimona Weil, Neurologist at the National Hospital for Neurology and Neurosurgery, UCLH and Neuroscientist at UCL talks through her most recent collaborative project, which explores fears about dementia in the Parkinson’s community.  It was delivered in collaboration with people living with Parkinson’s, healthcare professionals, researchers, engagement specialists, Parkinson’s UK, and artists at Central Saint Martins.

The team produced a pair of booklets for people with Parkinson’s and healthcare professionals to open up discussions about Parkinson's dementia and improve care, information and support.

Dr Rimona Weil at the launch for Patterns of Perception in Parkinson's Disease

What’s the motivation behind your research?

Parkinson’s is the second most common neurodegenerative disorder. People think of it as a movement disorder, but around half of all people diagnosed with Parkinson’s are also affected by dementia within 10 years of their diagnosis. Dementia is often the aspect that most worries people living with Parkinson’s. 

The overall aim of my research is to understand how dementia happens in Parkinson’s, and ultimately to develop treatments so that we can slow its progression.

The Patterns of Perception in Parkinson’s (PoP-PD) project arose because I found that people living with Parkinson’s did not want to talk about dementia, and that clinicians managing people with Parkinson’s can also be reluctant to have these conversations. This is because of the taboo about talking about dementia, and the worry that it could cause undue anxiety in patients. 

However, if people don’t talk about Parkinson’s dementia, they don’t access the support and treatments that can make a difference to their lives. It also means they don’t take part in research which is vital in understanding how and why it happens.

So, I decided to work together with artists at Central Saint Martins, experts at Parkinson’s UK, the Department of Imaging Neuroscience Public Engagement team, and most importantly, people living with Parkinson’s to unpack this problem. Our aim was to work together to better understand the discomfort about talking about dementia and to co-produce a pair of booklets to be used in the clinic to improve conversations about Parkinson’s dementia. This work took place over 18 months and was funded through a Wellcome Research Enrichment Grant.

A community workshop in action

What did your project involve?

We invited people with Parkinson’s and their loved ones to take part in a series of creative workshops at Central Saint Martins, London. Designed and facilitated by artists Anne Marr and Ruairiadh O’Connell, the workshops explored the taboo of dementia in Parkinson’s, and how people living with Parkinson’s and their families want to talk about dementia in a clinical setting. Creative techniques included collage and painting, and through the process of making, people were able to open up and talk more freely about Parkinson’s dementia.

Taking part in a creative workshop with the Parkinson's community 

Insights and outputs captured in these workshops were then used to co-produce a draft pair of booklets: 

•    One designed for people living with Parkinson’s and their families to provide information and support
•    One designed for healthcare professionals to provide guidance on how to diagnose and manage Parkinson’s dementia. 

We then ran a series of focus groups to co-develop and refine these booklets, both with people living with Parkinson’s and Parkinson’s healthcare professionals from a range of geographical and clinical settings. This meant that we had the latest clinical advice about managing Parkinson’s dementia and insights from people living with the condition.

We ensured the voices of people affected by Parkinson’s were at the heart of this work. We involved people with lived experience of Parkinson’s at every stage from planning the project, to involvement in the workshops, to co-designing and improving the toolkits. A team member whose research explores dementia within Black and Minority Ethnic populations ensured the project and resulting booklets were inclusive and accessible to underrepresented groups.

What were the tangible outcomes?

Our booklets have been adopted by Parkinson’s UK as their leading resources to support people with thinking and memory problems in Parkinson’s. Both booklets have been embedded within Parkinson’s UK’s online resources, and are freely available as printed booklets. This means they have wide reach for people worried about these symptoms, and for clinicians managing Parkinson’s dementia. They were launched at an online event with participants, collaborators and partners in July 2023:

Thinking and Memory Changes in Parkinson's booklet

•    Thinking and memory changes in Parkinson’s
•    A toolkit for detecting and managing Parkinson’s dementia

These booklets mean that people with Parkinson’s dementia can now access treatment and support that can make a meaningful difference to their lives; and they may be more open to taking part in research which aims to understand how dementia in Parkinson’s happens.

Over the coming months, we will continue to disseminate and promote the booklets with the Parkinson’s community, and will share lessons learned throughout this project with colleagues and peers working across Parkinson’s, art research and public engagement fields. 

Claire Bale, Associate Director of Research, Parkinson’s UK: “We were delighted to collaborate on this project which used creativity to break down the barriers to discussing dementia. The resources it has produced, co-created with people living with Parkinson's, are wonderful and will help open up conversations on this vital issue"

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