The ethics of dementia care

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Is it ever right to restrain a person with dementia who might otherwise wander?

Or to hide medication in food? Family carers may face difficult ethical dilemmas on a daily basis. Despite a strong and growing body of social science that could inform these dilemmas, little has been developed into advice or guidance.

The Nuffield Council on Bioethics convened a working party with a broad range of multidisciplinary expertise, including in the social sciences. Over two years it synthesised research, gathered evidence and tested ideas through ‘fact-finding’ meetings and visits involving a variety of institutions including academic departments, care homes and ‘dementia cafés’. An open consultation in 2008 received over 200 responses and a deliberative workshop gauged the opinions of 50 members of the public.

In 2009 the findings fed into a Council report, Dementia: Ethical Issues, which presented an ethical framework to help people think through issues that emerge in dementia care, and concluded that people can live well with dementia if they are properly supported.

The report recommended that narrowly- conceived risk assessments that restrict people’s activities should be replaced with analyses of risk and benefit, and this was cited approvingly in the 2010 Department of Health guidance, Nothing Ventured, Nothing Gained, which condemned ‘an overly cautious approach to risk’.

The Council report’s emphasis on the importance of ‘dementia friendly communities’ emerged as an important theme in the Prime Minister’s Challenge on Dementia and was cited in the Irish Government’s national strategy in 2014. Further policy support featured in a 2013 report by Alzheimer Europe, which recommended ways that people with dementia could be supported to continue living their lives as fully as possible.

From the national strategies of Scotland and Malta to publications by Alzheimer’s Australia and charity coalitions in Wales, the report’s recommendations continue to reverberate.

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