Improving conversations about Parkinson’s dementia

Author:

Dobreva IvelinaORCID,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.ORCID,Yarnall Alison J.,Carroll Camille,Bale Claire,Hugill Cassandra,Weil Rimona S.ORCID

Abstract

AbstractBackgroundPeople 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 mean that people with the condition can access treatment and support, and are more likely to participate in research aimed at understanding PD dementia.ObjectivesTo co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia.MethodsWe 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.ResultsWhile most people with PD (70%) and caregivers (81%) shared worries about cognitive changes at 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.ConclusionUsing 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.

Publisher

Cold Spring Harbor Laboratory

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