Improving Conversations about Parkinson's Dementia

DOBREVA, Ivelina, THOMAS, Joanne, MARR, Anne, O’CONNELL, Ruairiadh, ROCHE, Moïse, HANNAWAY, Naomi, DORE, Charlotte, ROSE, Sian, LIU, Ken, BHOME, Rohan, BALDWIN‐JONES, Sion, ROBERTS, Janet, ARCHIBALD, Neil, ALSTON, Duncan, AMAR, Khaled, EDWARDS, Emma, FOLEY, Jennifer A., HAUNTON, Victoria J., HENDERSON, Emily J., JHA, Ashwani, LINDOP, Fiona, MAGEE, Cathy, MASSEY, Luke, RUIZ‐MENDOZA, Eladia, MOHAMED, Biju, PATTERSON, Katherine, RAMASWAMY, Bhanu, SCHRAG, Anette, SILVERDALE, Monty, SUÁREZ‐GONZÁLEZ, Aida, SUBRAMANIAN, Indu, FOLTYNIE, Tom, WILLIAMS‐GRAY, Caroline H., YARNALL, Alison J., CARROLL, Camille, BALE, Claire, HUGILL, Cassandra and WEIL, Rimona S. (2024). Improving Conversations about Parkinson's Dementia. Movement Disorders Clinical Practice.

mdc3.14054.pdf - Published Version
Creative Commons Attribution.

Download (1MB) | Preview
Official URL:
Open Access URL: (Published version)
Link to published version::


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.

Item Type: Article
Additional Information: ** Article version: VoR ** From Wiley via Jisc Publications Router ** Licence for VoR version of this article: **Journal IDs: issn 2330-1619 **Article IDs: publisher-id: mdc314054 **History: published_online 02-05-2024; accepted 08-04-2024; rev-recd 05-04-2024; submitted 17-11-2023
Uncontrolled Keywords: Parkinson's dementia, Parkinson's
Identification Number:
SWORD Depositor: Colin Knott
Depositing User: Colin Knott
Date Deposited: 08 May 2024 15:54
Last Modified: 08 May 2024 15:54

Actions (login required)

View Item View Item


Downloads per month over past year

View more statistics