Centre wins grant for new project exploring dementia within Parkinsonâs disease
28 April 2021
A project at Wellcome Centre for Human Neuroimaging, MyAV·¶ Queen Square Institute of Neurology, focused on supporting dialogue and raising awareness of dementia within the Parkinsonâs community has been funded by a Wellcome Research Enrichment â Public Engagement grant.
Dr Rimona Weil, Principal Investigator of the Wellcome Centre for Human NeuroimagingâsÌęVision in Parkinsonâs Disease research teamÌęand a Principal Investigator at the MyAV·¶ Dementia Research Centre, will lead the project, which aims to better involve patients in research targeting dementia in Parkinsonâs.
Dr Weil and her team will work with leading charity Parkinsonâs UK, Central Saint MartinâsÌęProgramme Director Anne Marr, ArtistÌęRuairiadh OâConnellÌęandÌęMoĂŻse Roche, an expert in working with Black and Minority Ethnic communities around prevention, detection and management of dementia.
Building on the success of last yearâsÌęPatterns of Perception, this new project will begin with a series of workshops, run by artists Anne Marr and Ruairiadh OâConnell. Participants will include people with early-stage Parkinsonâs, people with Parkinsonâs dementia, and carers or loved ones of people with Parkinsonâs. Through creative activities, the workshops will explore fears around discussing dementia in the context of Parkinsonâs disease.
Using knowledge gathered in the workshops, the team will then produce an information toolkit for Parkinsonâs patients and carers, and a clinical toolkit to help clinicians open up conversations with patients. The charityÌęParkinsonâs UKÌęwill embed the toolkits within their information and support materials as part of a campaign to raise awareness of the risk of dementia in Parkinsonâs.
Cassandra Hugill, Public Engagement Manager at the Wellcome Centre for Human Neuroimaging is looking forward to exploring how the project can empower people with Parkinsonâs:
âThis project is an illustration of what meaningful public engagement can be. Through this work, we will be bringing together people from a range of areas of expertise, recognising the value of diversity in voices and experience. The toolkits created will help to open these important dialogues around the very real risk of dementia in people with Parkinsonâs.â
Dementia is a common complication of Parkinsonâ disease: it is six times more likely in people with Parkinsonâs than in the general population. Despite this, professionals working with the Parkinsonâs community are often hesitant to discuss dementia with patients out of concern that they will respond negatively.
Project lead, Dr Rimona Weil explains:
âDementia can feel like a new trauma for patients who have just become accustomed to living with Parkinsonâs. However, we need toÌętalk about cognitive decline in Parkinsonâs to engage patients in the research. In clinic, early conversations about Parkinsonâs dementia can help patients gain access to appropriate support, prepare for the future, and benefit from treatments to slow progression of dementia in Parkinsonâs.ÌęOur project aims toÌęidentify roots and triggers of discomfort linked with the concept of dementia within the Parkinsonâs community and to co-produce information resources to support dialogue and awareness of dementia in Parkinsonâs.â
By encouraging conversations about Parkinsonâs dementia, the project aims to help patients gain access better and earlier care. The team also hope to engage people with Parkinsonâs in research seeking to understand the causes and develop ways to treat cognitive decline in Parkinsonâs.
Moreover, the project will put diversity at the forefront by prioritising connections with marginalised groups with the support of Mr Roche. People from Black communities are often underrepresented in Parkinsonâs and dementia research.ÌęMoĂŻse RocheÌęof the MyAV·¶ Division of Psychiatry, works to improve dementia services for Black families, and will provide expertise and guidance to ensure the project has strong Black representation.
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