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Dementia Research Centre

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Patient and public involvement

We are committed to the involvement of patients and the public at all stages of our research projects.


Increasing access and involvement of underrepresented people into research on Parkinson’s dementia

A large number of groups are underrepresented in research. These include people from different ethnic minorities, such as people from Black African and South Asian communities. It also includes people from lower socio-economic backgrounds and rural areas. 
We are undertaking a research and engagement project that aims to understand the barriers to research participation from these communities; and also to engage people from these communities into our research. Our aim is to understand whether there are differing mechanisms underlying dementia in Parkinson’s in people from different ethnic backgrounds.
 

Patterns of Perception in Parkinson’s (PoP-PD)

Patterns of Perception in Parkinson’s disease (PoP-PD) is a collaborative research engagement project, funded by Wellcome and supported by Parkinson's UK. It aimed to explore fears and concerns associated with discussing dementia within the Parkinson’s community, and to co-produce a pair of information resources 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 information resources were awarded a prize for "Sharing and Learning" by the Parkinson's Excellence Network, and are available for download from Parkinson's UK at the following links: 

  • Thinking and memory changes in Parkinson’s. Designed for people living with Parkinson’s and their families, this information resource provides information and support about Parkinson’s dementia. You can also request print copies of this resource from Parkinson's UK. 
  • A toolkit for detecting and managing Parkinson’s dementia. Designed for healthcare professionals, this information resource provides practical guidance 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. Print copies can be requested from Parkinson's UK.