2010: The ethical issues linked to the use of assistive technology in dementia care
This document is the first report produced by Alzheimer Europe in collaboration with a team of experts in the framework of the European Dementia Ethics Network (EDEN), which was set up in 2009. The aim of EDEN is to discuss ethical issues of relevance to people with dementia within a multidisciplinary group of experts including people with dementia and carers in order to present the ethical issues related to specific topics for further reflection, along with a set of recommendations reflecting the position of Alzheimer Europe. The topic of the report for 2010 was the ethical issues linked to the use of assistive technology in dementia care.
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.
The overall goal of this project was to produce recommendations and a position on the ethical issues linked to the use of assistive technology in dementia care through a process of reflection and group discussion.
A multi-disciplinary working group was set up which contributed towards the literature search and the drafting of both the report and the recommendations. They met twice in 2010 (once in Brussels and once in Berlin) and also communicated by email in order to ensure the quality of the final report. Despite different backgrounds and opinions, the recommendations reflect a consensus position of the members of the working group. The report and recommendations were then submitted to the board of Alzheimer Europe which formally approved them before they were published. 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.
The members of the working group to whom Alzheimer Europe is immensely grateful for developing these recommendations and contributing towards the position of Alzheimer Europe are Dianne Gove, Heike von Lützau-Hohlbein, Inger Hagen, Sirkkaliisa Heimonen, Stefánia Kapronczay, James and Maureen McKillop, Maria McManus, Alistair Niemeijer, Päivi Topo and Luiza Spiru. Their expertise and experience was mainly in the domain of assistive technology development, service provision and organisation, ethics, information technology, research in the field of ethics and assistive technology, old age psychiatry, nursing, working for Alzheimer associations, caring, having dementia and using assistive technology. 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 European Dementia Ethics Network (EDEN) and approved by the Steering Committee of EDEN. Alzheimer Europe would therefore also like to thank the following for their support and expertise in the domain of ethics and in some cases their contribution to the drafting of the report and recommendations: 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.
The result of this project is a report containing background information and recommendations on the ethical issues linked to use of assistive technology in dementia care (both by and for people with dementia). It also contains annexes containing examples of ethical principles in relevant legal documents and various conventions, techniques to help come to a decision with examples of different decision-making models and a glossary.
The full report can be consulted on the Alzheimer Europe website at:
Last Updated: Wednesday 09 May 2012