Objective: To co-produce, with people living with Parkinson’s and professionals, a pair of toolkits to improve conversations about Parkinson’s dementia in the clinic: one for people living with Parkinson’s; the other for clinicians.

Background: Although dementia is common in Parkinson’s, those working in the Parkinson’s field often avoid using the term or having discussions about dementia due to worries about adverse responses from patients and the perception that “nothing can be done about Parkinson’s dementia”. Similarly, people living with Parkinson’s can be fearful of talking about dementia.  

However, these conversation are important to help patients gain access to appropriate support, prepare for the future and benefit from treatments for dementia-related symptoms.

Method: We ran a series of workshops with artists and 33 people living with Parkinson’s and their families, to explore the stigma about dementia, and how to best address this in the clinic. We used outputs from these workshops to co-create a pair of toolkits: an information toolkit for people with Parkinson’s and their families; and a clinical toolkit. We refined these toolkits through a series of focus groups with people living with Parkinson’s and with >18 Parkinson’s experts across the UK (neurologists, geriatricians, Parkinson’s nurses, psychologists). We made sure to include in our expert and lived experience groups people from a range of communities, including Black and Asian communities, which are often under-represented in Parkinson’s and dementia research.

Results: Through a process of co-production we have produced a pair of toolkits: one for people with Parkinson’s and their families, to consult if they have worries about cognition; and one for use by clinicians, with practical tips on detecting and treating Parkinson’s dementia and related symptoms.

Our toolkits have been adopted by Parkinson’s UK, who will embed them within their information and support strategy. The toolkits will be officially launched in July 2023.

Conclusion: Through engaging people with lived experience and a network of experts, and through using creative approaches and the expertise of our multi-disciplinary team, we have developed a pair of toolkits to improve conversations about dementia in the Parkinson’s clinic. Opening up these conversations will enable patients to access treatment and support.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/clinical-toolkits-to-improve-conversations-about-parkinsons-dementia/