This project will explore palliative and end of life care for people with Parkinson’s disease and Lewy body dementia. The aim to increase and share knowledge amongst health and social care practitioners.
Background
Parkinson’s disease is a neurological condition commonly affecting older people. It is a complex condition resulting in a wide range of symptoms. Within the palliative phase this includes difficulty swallowing, pain, confusion, tremor, rigidity, difficulty communicating. Prescribing for Parkinson’s conditions is complex and can be challenging at end of life. This is because some commonly used end of life medications may be contraindicated in Parkinson’s disease and Lewy body dementia. In addition, swallowing issues at end of life can result in patients having difficulty taking oral L-dopa medication (Parkinson’s dopamine medication). Little is known about the difficulties clinicians face in prescribing and managing symptoms at the end of life, and how this is affecting patients and families.
Project Aims
The objective is to explore the current extent and type of evidence in relation to end of life prescribing practices for people with Parkinson’s disease and Lewy body dementia. We aim to provide an overview of the available literature and consider where further research is needed. A further aim is to share best practice and latest evidence nationally amongst health and social care professionals through a community of practice.
Project Activity
We are currently undertaking a literature review of the current evidence on end of life prescribing in Parkinson’s disease and Lewy body dementia. The objective of this review is to understand the extent and type of evidence in relation to end of life prescribing practices for people with Parkinson’s disease and Lewy body dementia. Dr Allison Bentley has ongoing involvement with the national Lewy Body Society Dementia Community of Practice (CoP).
Anticipated or actual outputs
A literature review will highlight any gaps in the current evidence in end-of-life prescribing for people with Parkinson's disease and Lewy body dementia. The national Lewy body dementia Community of Practice (CoP) aims to provide a platform for nurses, allied health professionals, psychologists, and social workers to share best practice in providing care, support and advice for people living with Lewy body dementia.
Papers/resources
Dr Bentley is a steering group member with the Lewy Body Dementia Community of Practice (CoP). Working with the Lewy Body Society, our aim is to share best practice, and collaborate with nurses, allied health professionals, psychologists, and social workers working in this area.
https://www.lewybody.org/professional-resources/community-registration/
Who is involved?
- PI Dr Allison Bentley, University of Cambridge, corresponding researcher
- Professor Stephen Barclay, University of Cambridge
- Dr Ben Bowers, University of Cambridge
- Lewy Body Society, UK
