2010: The ethical issues linked to the use of assistive technology in dementia care
Ethical issues in practice
In this document, Alzheimer Europe presents its position and guidelines on the ethical use of assistive technology (AT) for/by people with dementia and proposes an ethical framework for decision making. A brief overview is provided of the three main issues of importance, namely dementia, assistive technology and ethics. This is followed by a discussion of the various ethical issues linked to the use of AT (based on an extensive review of the literature) which addresses not only possible disadvantages and ethical dilemmas but also looks at the positive implications of the use of AT and how it can contribute towards respecting certain ethical principles with regard to people with dementia. Whilst we consider that assistive technology should be first and foremost for the benefit of people with dementia, we highlight where appropriate the implications, both positive and negative, on informal and professional carers.
This publication is targeted at a wide audience including people with dementia, carers, health and social care professionals, service providers, AT designers, researchers and policy makers.
As Chair of Alzheimer Europe, I would like to thank all members of the working group (Dianne Gove, Inger Hagen, Sirkkaliisa Heimonen, Stefánia Kapronczay, James and Maureen McKillop, Maria McManus, Alistair Niemeijer, Päivi Topo and Luiza Spiru) of which I was also a member. The working group, which was led by Dianne Gove, Information Officer of Alzheimer Europe, actively sought relevant literature, drafted specific parts of the text reflecting their particular expertise and experience, debated controversial issues and provided detailed comments on the whole document. Their expertise and experience was mainly in the domain of AT development, service provision and organisation, ethics, IT, research in the field of ethics and AT, old age psychiatry, nursing, working for Alzheimer associations, caring, having dementia and using AT. Without the members of the working group, it would not have been possible to produce such a comprehensive report.
The whole project was carried out within the framework of the Dementia Ethics Network and this was the first topic to be addressed in detail. This document on the ethical use of AT for/by people with dementia was approved by the Steering Committee of the Dementia Ethics Network whose members I would also like to thank for their support and expertise in the domain of ethics and in some cases their contribution to the work on the topic of AT (Jean Georges, Alain Franco, Cees Hertogh, Celso Pontes, Christian Berringer, Cornelia Reitberger, François Blanchard, Iva Holmerova, Kati Juva, Malou Kapgen, Mary Marshall, Matthias von Schwanenflügel, Michael Schmieder, Sabine Jansen, Sigurd Sparr) as well as Magda Aelvoet and Bénédicte Gombault from the Roi Baudouin Fondation in Belgium.
I am proud of our approach and the outcome of our work and believe that this text will be informative, useful and thought provoking. I hope that it will contribute towards the ethical use of AT for/by people with dementia and would welcome any feedback from you concerning your own experience, recent developments in the field of AT and ethics, and ideas concerning the ethical use of assistive technology.
Finally, I would like to thank the German Ministry of Health and the European Commission for their financial support for this project which made it possible to carry out this important work and to publish the results.
Heike von Lützau-Hohlbein
Last Updated: Monday 18 July 2016