Publish date: 31 July 2023

Researchers at UCLH and UCL and people living with Parkinson’s have produced new information booklets for clinicians and patients to support easier conversations about Parkinson’s dementia.

The booklets mark a significant milestone in addressing the need for increased awareness of Parkinson’s dementia. They have been adopted by Parkinson’s UK to be part of their official resources, enabling those in the Parkinson’s community to freely access digital and print copies.

The booklets were launched by the Patterns of Perception in Parkinson’s disease (PoP-PD) team, led by UCLH consultant neurologist Dr Rimona Weil, in collaboration with researchers from the Wellcome Centre for Human Neuroimaging, Parkinson’s UK, Central Saint Martins and UCL staff.

Parkinson’s disease increases the risk of developing dementia, yet conversations about this are often avoided due to societal taboos and a perceived lack of support and guidance. In recognising this barrier, the multidisciplinary team and individuals living with Parkinson’s set out the PoP-PD project to challenge misconceptions and provide essential resources.

Development of the booklets involved a series of creative workshops facilitated by artists Anne Marr and Ruairiadh O’Connell. These workshops brought together individuals living with Parkinson’s and their loved ones to explore their experiences, concerns and desired support.

Dr Weil, who is a neurologist at the National Hospital for Neurology and Neurosurgery at UCLH and a neuroscientist at UCL, said: "By including Parkinson’s experts from around the UK, we were able to include the very best guidance on how to treat Parkinson’s dementia in the clinic. These booklets mean that people with Parkinson’s dementia can now access treatment and support that can make a meaningful difference to their lives; and they may be more open to taking part in research which aims to understand how dementia in Parkinson’s happens."

Access the booklets

Thinking and memory changes in Parkinson’s

The first booklet is designed specifically for individuals living with Parkinson’s and provides comprehensive information about Parkinson’s dementia, its risks and how to manage associated challenges.

A toolkit for detecting and managing Parkinson’s dementia

The second booklet is tailored for healthcare professionals who may encounter patients with Parkinson’s dementia. The resource addresses perceived barriers in discussing the condition such as lack of training and concerns about patient reactions.

Watch the PoP-PD film for more information on the project.

Image: Dr Rimona Weil