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2014: Ethical dilemmas faced by carers and people with dementia

Ethical dilemmas often arise as a consequence of having dementia or caring for a person with dementia which are difficult to resolve. Sometimes problems seem insurmountable and it is difficult to decide what to do because it is not clear what is right or wrong, ethically speaking. I am therefore very pleased to present this report on ethical dilemmas faced by carers and people with dementia. It will hopefully help people with dementia and their carers to understand ethical dilemmas, approach them more confidently and feel more at ease with any decisions that might be made.

The report sets the scene by providing background information about dementia, ethics and dilemmas and then presents a series of short stories (vignettes) which describe typical ethical dilemmas based on the literature and the expertise of the working group. The use of short stories describing various ethical dilemmas can be particularly helpful and I hope that readers will be able to relate to the characters described. These are hypothetical situations but the characters seem very real.

Nevertheless, it is natural to want to know what to do or, more specifically, to know how someone with knowledge about ethics might make sense of various ethical dilemmas. The working group adopted a novel and refreshing approach in which they, along with several additional experts in ethics, commented on these hypothetical situations. I hope that this will enable readers to reflect on the important issues and hopefully, with the further guidance on approaching ethical dilemmas in the last part of the report, to be able to apply such reflection to a similar but nevertheless unique situation they might find themselves in one day. Difficult topics are addressed but in a positive manner which emphasises the personhood and dignity of all concerned.

To conclude, as Chairperson of Alzheimer Europe, I would like to express my sincere thanks to Dianne Gove (chair of the working group), the members of the working group Stig Atle Aavik (who has dementia), Ranveig Hoff (his aunt and carer), Chris Gastmans, Julian Hughes, Eila Okkonen, Jan Oyebode and Federico Palermiti, and the additional experts Michael Dunn, Charlotte Emmett, Cees Hertogh, Louisa Jackman, Ian James, Jana Kasparkova, Anneli Sarvimäki, Mark Schweda and Guy Widdershoven who donated their time, expertise and enthusiasm to making this a valuable resource for anyone facing or trying to understand ethical dilemmas linked to having dementia or being an informal carer.

Heike von Lützau-Hohlbein

Chairperson of Alzheimer Europe



Last Updated: Monday 08 February 2016