Improving conversations about Parkinson’s dementia

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 mean that people with the condition can access treatment and support, and are more likely to participate 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 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. 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.