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We are committed to the involvement of patients and the public in the planning stages of our research projects.
Increasing access and involvement of Black African people in research into Parkinson’s dementia
Thinking and memory changes can be common in Parkinson’s disease. Recent genetic studies have revealed different mechanisms of Parkinson’s in Black African than White European patients and understanding the differences in risk and disease progression is key to improving treatment strategies for different groups.
So far, there has been less research on Parkinson’s dementia in Black African people. Ethnic minority populations encounter barriers to research participation including poor engagement from researchers, low awareness and mistrust of research, and concerns about financial costs.
We seek to engage directly with people from ethnic minority populations and Black African people with Parkinson’s disease to understand the barriers they face and improve research participation.
Patterns of Perception in Parkinson’s (PoP-PD)
Patterns of Perception in Parkinson’s disease (PoP-PD) is a collaborative research engagement project, funded through the Wellcome Research Enrichment – Public Engagement Fund. It 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. 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 booklets have been adopted as the official information resource on Parkinson’s dementia from Parkinson’s UK.
- Thinking and memory changes in Parkinson’s. Designed for people living with Parkinson’s and their families, this booklet provides information and support about Parkinson’s dementia. It is freely available via Parkinson’s UK.
- A toolkit for detecting and managing Parkinson’s dementia. Designed for healthcare professionals, this booklet provides practical information on the diagnosis and management of Parkinson’s dementia and dispels the idea that there is nothing that can be done about Parkinson’s dementia. It is freely available via the Parkinson’s UK Excellence Network.