Improving Conversations about Parkinson's Dementia

Ivelina Dobreva*, Joanne Thomas, Anne Marr, Ruairiadh O'Connell, Emily J Henderson, Moise Roche, et al

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review


People with Parkinson's disease (PD) have an increased risk of dementia, yet patients and clinicians frequently avoid talking about it due to associated stigma, and the perception that “nothing can be done about it”. However, open conversations about PD dementia may allow people with the condition to access treatment and support, and may increase participation in research aimed at understanding PD dementia.

To co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia.

We worked with people with PD, engagement experts, artists, and a PD charity to open up these conversations. 34 participants (16 PD; 6 PD dementia; 1 Parkinsonism, 11 caregivers) attended creative workshops to examine fears about PD dementia and develop information resources. 25 PD experts contributed to the resources.

While most people with PD (70%) and caregivers (81%) shared worries about cognitive changes prior to the workshops, only 38% and 30%, respectively, had raised these concerns with a healthcare professional. 91% of people with PD and 73% of caregivers agreed that PD clinicians should ask about cognitive changes routinely through direct questions and perform cognitive tests at clinic appointments. We used insights from the creative workshops, and input from a network of PD experts to co-develop two open-access resources: one for people with PD and their families, and one for healthcare professionals.
Original languageEnglish
Pages (from-to)814-824
Number of pages11
JournalMovement Disorders Clinical Practice
Issue number7
Early online date2 May 2024
Publication statusE-pub ahead of print - 2 May 2024

Bibliographical note

Publisher Copyright:
© 2024 The Authors. Movement Disorders Clinical Practice published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

Structured keywords

  • Ageing and Movement Research Group


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