Patient Education for People with Parkinson’s Disease and Their Carers

Dr Marcia Smith Pasqualini is a clinical and academic neuropsychologist, currently working as an associate professor at Avila University in Kansas City, Missouri, USA. She received her Bachelor of Science degree from Tulane University and her PhD from the University of Missouri Columbia. Dr Smith Pasqualini s primary area of research is the social neuroscience of emotion and facial expression. She was employed as a senior lecturer at the University of Portsmouth for nine years, and was the Principal Investigator for the United Kingdom for the EduPark project. Dr Gwenda Simons is a social psychologist, currently working as a research associate in the Department of Experimental Psychology at the University of Oxford. Dr Simons received her MA in social psychology from the University of Amsterdam, and her PhD from the University of Portsmouth. She has published research articles in the area of facial expression and emotion, with a particular interest in people with Parkinson s disease. Dr Simons worked as a research associate at the University of Portsmouth for the EduPark project.

This manual provides the information and materials needed to conduct an eight session patient education programme for people with Parkinson s disease and their carers, complementing medical treatment. This programme was developed within an interdisciplinary European consortium, comprising research and clinical centres in Germany, Spain, Finland, Italy, The Netherlands, Estonia and the United Kingdom. In addition to dealing with the motor symptoms of Parkinson s disease, many people also struggle with the psychological and social effects. In fact, people at every stage of the disease can be faced with problems such as depression, anxiety, stressful social interactions, and difficulties communicating, all of which can disrupt their lives. This programme draws upon basic psychological principles and presents specific strategies that people can use to manage these difficulties. The ultimate goal of the programme is to empower people with Parkinson s disease and their carers to improve their own quality of life. Although the programme is standardised, flexibility is built into the programme to facilitate its use in different cultures, and with different types of patient and carer groups. Patient Education for People with Parkinson s Disease and Their Carers: A Manaual is essential reading for all health care professionals and trained volunteers working with people with Parkinson s disease and their carers.

The book has grown out of an EduPark Grant from the EU to investigate the use of self monitoring for people with Parkinson s Disease. Seven countries were involved in the research the UK, Estonia, Italy, Spain, Finland, Germany and the Netherlands. Researchers from each country have contributed a chapter to this book.

About the Editors. Preface. Acknowledgements. Contributors. Part I: Introduction to the EduPark Programme. Chapter 1: The nature of Parkinson s disease and the need for a multifaceted patient education programme ( The EduPark Consortium ). Chapter 2: Structure of the programme and guidelines for leaders ( The EduPark Consortium ). Part II: Programme Sessions. Session 1: Information ( Pille Taba, Ülle Krikmann and Eve Kanarik ). Session 2: Self monitoring ( Gwenda Simons, Marcia Smith Pasqualini and Simon Thompson ). Session 3: Pleasant activities ( Michael Macht, Heiner Ellgring, Christian Gerlich and Martina Schradi ). Session 4: Stress management for people with PD and for carers ( Anu Lankinen, Vappu Viemerö and Anne Lehtonen ). Session 5: Management of anxiety and depression (for people with PD) and the carer s challenge (for carers) ( Àngels Bayés Rusiñol, Mari Cruz Crespo Maraver and Anna Prats París ). Session 6: Social competence for people with PD and for carers ( Noëlle G. A. Spliethoff Kamminga and Janny de Vreugd ). Session 7: Social support ( Pio Enrico Ricci Bitti and Lorena Candini ). Session 8: Review of the programme and a look forward ( Christian Gerlich, Michael Macht, Martina Schradi and Heiner Ellgring ). Part III: The EduPark Programme: Final Thoughts. The EduPark programme: Final thoughts ( Marcia Smith Pasqualini and Gwenda Simons ). Appendix: Assessment Scales. References.

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