Dementia: ethical issues -- full report

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Dementia: ethical issues
Report by the Nuffield Council on Bioethics
October 2009

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.


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

Download the full report at:

http://www.nuffieldbioethics.org/fileLibrary/pdf/Dementia_report_for_web.pdf