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NuffDementiaCover 22/7/09 18:25 Page 1 Dementia: Previous Nuffield Council reports Genetic screening: ethical issues The ethics of research related to ethical issues Published December 1993 healthcare in developing countries: a follow-up Discussion Paper Human tissue: ethical and legal issues Published March 2005 Published April 1995 The ethics of research involving Animal-to-human transplants: animals the ethics of xenotransplantation Published May 2005 Published March 1996 Genetic Screening: a Supplement to the Mental disorders and genetics: 1993 Report by the Nuffield Council on the ethical context Bioethics Published September 1998 Published July 2006 Genetically modified crops: Critical care decisions in fetal and the ethical and social issues neonatal medicine: ethical issues Published May 1999 Published November 2006 The ethics of clinical research in The forensic use of bioinformation: developing countries: ethical issues a discussion paper Published September 2007 Published October 1999 Public health: ethical issues Stem cell therapy: the ethical issues – a discussion paper Published November 2007 Published April 2000 The ethics of research related to healthcare in developing countries Published April 2002 The ethics of patenting DNA: a discussion paper Published July 2002 Genetics and human behaviour: the ethical context Published October 2002 Pharmacogenetics: ethical issues Published September 2003 The use of genetically modified crops in developing countries: a follow-up Discussion Paper Published December 2003 Nuffield Council on Bioethics Nuffield Published by Dementia: Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS ethical issues Printed in the UK © Nuffield Council on Bioethics 2009 ISBN 978-1-904384-20-5 NuffDementiaCover 22/7/09 18:25 Page 2 Published by Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Telephone: 020 7681 9619 Fax: 020 7637 1712 Email: [email protected] Website: http://www.nuffieldbioethics.org ISBN: 978-1-904384-20-5 October 2009 To order a printed copy, please contact the Nuffield Council on Bioethics or visit the website. European countries (EU and non EU): £10 per report (where sold) Countries outside Europe: £15 per report (where sold) Developing countries: Free © Nuffield Council on Bioethics 2009 All rights reserved. Apart from fair dealing for the purpose of private study, research, criticism or review, no part of the publication may be produced, stored in a retrieval system or transmitted in any form, or by any means, without prior permission of the copyright owners. Web references throughout this report were accessed July 2009. Produced by Cambridge Publishers Ltd. 275 Newmarket Road Cambridge CB5 8JE www.cpl.biz Printed in the UK Cover image: ‘Explosion of colour’ by Gwen Finney This painting on silk was produced during a series of workshops for people with dementia at Hillcrest Day Hospital, Smethwick, West Midlands funded by the charity Sandwell Third Age Arts which provides creative activities for older people with mental health problems and dementia. www.staa.org.uk 2 Nuffield Council on Bioethics Dementia: ethical issues Dementia: ethical issues Nuffield Council on Bioethics Professor Albert Weale FBA (Chair) Professor Hugh Perry FMedSci (Deputy Chair) Professor Steve Brown FMedSci Professor Roger Brownsword Dr Amanda Burls Professor Robin Gill Professor Sian Harding FAHA FESC Professor Peter Harper Professor Ray Hill FMedSci Professor Søren Holm Professor Christopher Hood FBA* Professor Tony Hope** Dr Rhona Knight FRCGP Professor Graeme Laurie FRSE Dr Tim Lewens Professor Ottoline Leyser CBE FRS Professor Anneke Lucassen Professor Alison Murdoch FRCOG Dr Bronwyn Parry Professor Nikolas Rose Professor Jonathan Wolff * co-opted member of the Council while chairing the Working Party on Medical profiling and online medicine: the ethics of ‘personalised’ healthcare in a consumer age ** co-opted member of the Council while chairing the Working Party on Dementia: ethical issues Secretariat Hugh Whittall (Director) Katharine Wright Harald Schmidt iii Dr Alena Buyx Caroline Rogers Catherine Joynson Kate Harvey Tom Finnegan Varsha Jagadesham Julia Trusler (until August 2008) Sarah Bougourd Carol Perkins Audrey Kelly-Gardner The terms of reference of the Council are: 1. to identify and define ethical questions raised by recent advances in biological and medical research in order to respond to, and to anticipate, public concern; 2. to make arrangements for examining and reporting on such questions with a view to promoting public understanding and discussion; this may lead, where needed, to the formulation of new guidelines by the appropriate regulatory or other body; 3. in the light of the outcome of its work, to publish reports; and to make representations, as the Council may judge appropriate. The Nuffield Council on Bioethics is funded jointly by the Medical Research Council, the Nuffield Foundation, and the Wellcome Trust iv Acknowledgments The Council would like to thank the members of the Working Party for the considerable time, enthusiasm and expertise that they contributed to this Report. We are indebted to all those who attended and contributed to fact-finding meetings (see Appendix 1); to those who responded to our consultation and participated in our deliberative event (see Appendix 2); and to the nine peer reviewers who commented on an earlier version of this Report (see Appendix 1). We are also grateful to those who shared their work before its date of publication, including Foresight, which provided an embargoed copy of its report Mental Capital and Wellbeing, and Dr Daniella Wickett, who shared a draft copy of her thesis on attitudes towards advance directives The Council would also like to thank those who provided invaluable advice on specific areas of the Report, including Dr Cesar Rodriguez and Professor Bob Woods. Finally, we would like to express particular thanks to Professor June Andrews and her colleagues at the Dementia Services Development Centre at the University of Stirling for all their help and advice. v Foreword It is less than 20 years since ethics became a standard part of the curriculum in medical schools in the United Kingdom. It is perhaps a sign of how much attitudes within and outside the medical profession have changed that today ethical issues in health care often hit the headlines, and students in all the health professions engage frequently with such issues. When I was working as a junior psychiatrist involved in the care of people with dementia I spent much of my time talking with patients and their families. I was not surprised by the accounts I was given of the physical and emotional stresses. What did surprise me was how frequently the problems that came up were ethical problems. Family members, for example, would struggle with questions of what is the right thing to do. These questions, far from being an insignificant addition to all the more practical difficulties with caring, were often of central importance and a cause of considerable distress. There was very little support either for people with dementia or their families in coping with these ethical problems. The Nuffield Council on Bioethics has a distinguished track record in identifying and considering ethical issues raised by modern medicine. I had associated the work of the Council particularly with issues raised by recent advances in technology or specific discoveries from biological research. I was therefore surprised, but impressed, when the Council chose to examine the ethical issues that arise in the context of dementia. These issues are pressing not because of any specific advance in research but because of the accumulation of many developments. First and foremost among them are the increasing numbers of people affected by dementia and this is primarily due to the number of people living into old age. The biological and social sciences are leading to greater understanding of dementia, for example of the many different causes, and of the varieties of ways in which these affect people’s brains and experiences. Diagnostic methods are improving. There are now drugs that can help some people with dementia. Ethical issues arise from all these developments. Any comprehensive dementia strategy must address the issue of providing support for dealing with the ethical issues that arise from day to day for people with dementia, for their carers and for the relevant professionals. The Working Party has received unprecedented help from the public in response to its consultation on the ethical issues associated with dementia. Large numbers of families and friends caring for people with dementia wrote to us of their experiences and views. People with dementia met with us. We heard from many individuals and organisations involved in supporting those with dementia either professionally or within the voluntary sector. Researchers contacted us. We met with people developing innovative forms of support, and we discussed some of the ethical issues with a cross- section of the public at a special event arranged in Birmingham. From all this we learned that ethical issues are hugely significant. We learned too of the immense commitment, creativity, and love, all over the UK and no doubt elsewhere, that people show when dementia touches their lives. We hope that this Report, in highlighting the importance of ethical issues, will provide some impetus towards improving support for all those affected by dementia. vii Finally, this Report would not have
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