Dementia carers need more support in tackling ethical dilemmas

Carers of people with dementia need more support and advice to tackle the difficult ethical dilemmas that they face on a daily basis, says the Nuffield Council on Bioethics in a major report today. The report sets out an ethical approach to dealing with these dilemmas, and makes policy recommendations aimed at improving the lives of people with dementia and their carers. Professor Tony Hope, chair of the Working Party that produced the report and a psychiatrist with many years of experience of working with people with dementia said: “I know from the families I talk to that it is often the little things that are the most distressing. For example, one lady we spoke to had to lie to her husband to get him to the day care centre, which is something she’d never done before. Another common problem is being worried that a person will hurt themselves, for example by slipping in the bathroom. But going into the bathroom with them and intruding on their privacy can be, understandably, very upsetting.” “There will rarely be a straightforward answer to these problems, but we want carers to have better access to support and advice to help them work out what is best in their particular situation. Giving carers opportunities to talk to others in the same situation is also vital.” The Alzheimer Café scheme is a good example of this, where people with dementia, their carers, and professionals, are brought together, not just to socialise, but to tackle some of these difficult ethical issues. There are around 20 Alzheimer Cafés in the UK at the moment. Dr Rhona Knight, a GP and one of the authors of the report, said: “People with dementia also need more respect. We heard one person describe having dementia as being ‘like a non-person’. We have to challenge these kinds of attitudes. People with dementia are often capable of doing much more than we think, and even if they can’t make big decisions, they may be able to make smaller ones, such as what to wear or eat.” “We also want doctors, nurses and professional carers to be equipped with information and training to help them deal with the ethical dilemmas they come across in their daily work. For example, A&E staff see people with dementia all the time, but may not know how best to handle difficult situations that can arise.” “Any one of us or a member of our family could develop dementia. We need to pull together as a society to help people with dementia and their carers live better, richer lives.” The Nuffield Council on Bioethics also makes a number of further recommendations:

• Our ethical approach to dementia care states: with good care and support people with dementia can expect to have a good quality of life; people with dementia remain the same, equally valued, people throughout the course of their illness; and people with dementia are fellow citizens and we have a responsibility, as a matter of social solidarity, to support them and those who care for them.
• Dementia is a medical disorder but the services needed by people with dementia are often classed as ‘social’, which are often not available until a crisis occurs. It is not considered acceptable to make people with cancer wait until crisis point before getting support and people with dementia should not to have to wait either.
• People should have access to good quality assessment and support from the time they, or their families, become concerned about symptoms of dementia.
• Families should be treated as ‘partners in care’ by professionals. Trust is a key part of such a caring partnership.
• Protecting people from harm is important, but minimising the risk of harm to a person with dementia may reduce their quality of life. ‘Risk assessments’ should be replaced by ‘risk-benefit assessments’ that take into account the well-being of the person with dementia.
• The Equality and Human Rights Commission should highlight the legal duties of service providers, such as shops and restaurants, to ensure people with dementia can use their services.
• More guidance is needed on how to apply mental capacity legislation in practice, for example, how people with dementia can be involved in decisions about their care and treatment, and how past and present wishes should be taken into account where these conflict. The process of appointing a welfare attorney should be easy and free of charge for everyone.
• There should be more funding for dementia research, including research into how people with dementia can be supported to live the best possible lives.

“Things are starting to change but dementia still carries a stigma,” said Professor Hope. “Dementia needs to become an accepted, visible part of our society, and people with dementia should be able to take part in the activities they enjoy.” About 700,000 people in the UK currently have dementia and this is likely to increase to 1.7 million by 2051.

NOTES TO EDITORS

1. For further information contact: Catherine Joynson Communications Manager Nuffield Council on Bioethics 28 Bedford Square, London WC1B 3JS Tel: +44 (0)20 7681 9619 Mob: +44 (0)7747 635863 Email: cjoynson@nuffieldbioethics.org Web: www.nuffieldbioethics.org 2. Background The Nuffield Council on Bioethics established a Working Party to examine the ethical issues surrounding dementia in November 2007. The group included members with expertise in medicine, nursing, neuroscience, law, sociology and philosophy, and members representing people with dementia and carers. To inform its deliberations, the Working Party:

• held a public consultation, during which it received 200 responses;
• held a series of ‘fact-finding meetings’ with people with direct experience of living with dementia and with those working in the field of dementia; and
• held a one-day ‘deliberative event’ in Birmingham, involving over 50 members of the public with no direct experience of dementia.

See Appendix 1 of the report for more details of the method of working. The Working Party’s conclusions and recommendation are published today in the report Dementia: ethical issues. 3. The report Copies of the report Dementia: ethical issues will be available to download on from the Council’s website from Thursday 1st October 2009. 4. Video footage We have some footage of an Alzheimer Café event in Farnborough available on request for use by journalists. This includes interviews with carers and people with dementia. 5. Useful contacts for case studies or spokespeople Alzheimer Café Kandy Redwood, co-founder of the first UK Alzheimer Café, in Farnborough Tel: 01252 796223 Mob: 07947 272757 Email: kandy.redwood@hants.gov.uk www.alzheimercafe.co.uk Admiral Nurses/Uniting Carers for dementia Rhonda Smith/Marc Catchpole, Minerva PRC Tel: 01264 710428 Mob: 07887 714957 / 07753 821525 Email: rhonda@minervaprc.com / marc@minervaprc.com www.fordementia.org.uk Alzheimer's Society Helen Laurence, Press officer Tel: 0207 4233595 Mob: 07802 688774 Email: helen.laurence@alzheimers.co.uk Dementia Services Development Centre, University of Stirling Professor June Andrews, Director Tel: 01786 467 740 Mob: 07906 696 341 Email: june.andrews@stir.ac.uk www.dementia.stir.ac.uk 6. Working Party members Professor Tony Hope (Chair) Professor of Medical Ethics, University of Oxford, honorary consultant psychiatrist Professor Janet Askham (deceased, July 2008) Director of Research, Picker Institute Mary Baker MBE President, European Federation of Neurological Associations Harry Cayton Chief Executive of the Council for Healthcare Regulatory Excellence, former National Director for Patients and the Public at the Department of Health and former Chief Executive of the Alzheimer’s Society Chris Chaloner Independent Healthcare Ethics Consultant and former Ethics Adviser, Royal College of Nursing Dr Jim Eccles Consultant Physician, the Leeds Teaching Hospitals NHS Trust Professor Julian C. Hughes Consultant in Old Age Psychiatry and honorary Professor of the Philosophy of Ageing, Northumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health, Newcastle University Dr Gemma Jones Educator/consultant on dementia care and design issues related to dementia care; Chair, Alzheimer Café UK Dr Rhona Knight General Practitioner; Member of the Council Dr John McMillan Associate Professor, School of Medicine, Flinders University, Australia Professor Jill Peay Professor of Law, London School of Economics Professor Hugh Perry Professor of Experimental Neuropathology, University of Southampton; Member of the Council Professor Ruud Ter Meulen Professor of Ethics in Medicine, University of Bristol Dr David Wilkinson Consultant in Old Age Psychiatry, Moorgreen and Western Community Hospitals, Southampton 7. About the Nuffield Council on Bioethics The Nuffield Council on Bioethics examines ethical issues raised by new developments in biology and medicine. Established by the Nuffield Foundation in 1991, the Council is an independent body, funded jointly by the Foundation, the Medical Research Council and the Wellcome Trust. The Council has achieved an international reputation for addressing public concerns, and providing independent advice to assist policy makers and stimulate debate in bioethics.