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. 2024 Jul;11(7):814-824.
doi: 10.1002/mdc3.14054. Epub 2024 May 2.

Improving Conversations about Parkinson's Dementia

Ivelina Dobreva  1 , Joanne Thomas  2 , Anne Marr  3 , Ruairiadh O'Connell  4 , Moïse Roche  5 , Naomi Hannaway  1 , Charlotte Dore  2 , Sian Rose  2 , Ken Liu  2 , Rohan Bhome  1 , Sion Baldwin-Jones  6 , Janet Roberts  7 , Neil Archibald  8 , Duncan Alston  9 , Khaled Amar  10 , Emma Edwards  11 , Jennifer A Foley  12   13 , Victoria J Haunton  14 , Emily J Henderson  15   16 , Ashwani Jha  13 , Fiona Lindop  6   17 , Cathy Magee  18 , Luke Massey  19 , Eladia Ruiz-Mendoza  20 , Biju Mohamed  21 , Katherine Patterson  1 , Bhanu Ramaswamy  6   22 , Anette Schrag  23 , Monty Silverdale  24 , Aida Suárez-González  1 , Indu Subramanian  25   26 , Tom Foltynie  13   18 , Caroline H Williams-Gray  27   28 , Alison J Yarnall  29 , Camille Carroll  30 , Claire Bale  6 , Cassandra Hugill  2 , Rimona S Weil  1   2   13   18
Affiliations

Improving Conversations about Parkinson's Dementia

Ivelina Dobreva et al. Mov Disord Clin Pract. 2024 Jul.

Abstract

Background: 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.

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

Methods: 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.

Results: 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.

Conclusion: Using artistic and creative workshops, co-learning and striving for diverse voices, we co-produced relevant resources for a wider audience to improve conversations about PD dementia.

Keywords: Parkinson's; Parkinson's dementia.

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Figures

Figure 1
Figure 1
Outputs from the creative workshops that informed the content of information resources.
Figure 2
Figure 2
Front covers of the information resources for (A) people with PD; and (B) for healthcare professionals.
See this image and copyright information in PMC

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