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Working groups in the Network


In order to be able to develop guidelines on various topics within dementia, literature reviews are being carried out/will be carried out by different working groups.

One of the main functions of the Network is to set up working groups on various ethical issues. There is a Steering Committee which oversees the running of the working groups. The first working group set up was on Assistive Technology, which was set up in 2009.

Dianne Gove, Information Officer, Alzheimer Europe, gives an update of the progress made by the working group on assistive technology.

On 8 March 2010, the working group on assistive technology (AT) met for the first time in Brussels, in the framework of the Dementia Ethics Network, to assess progress with the literature review and discuss various issues of relevance to this topic. Members of the group from different backgrounds presented their views on the use of assistive technology each from their own perspective (i.e. as a person with dementia , an informal carer or a professional care provider). This was followed by presentations which focused on the ethico-legal implications of the use of AT, possible conflict between ethics and the cultural, social and financial context and last but not least, how AT can positively contribute towards the respect of ethical principles such as autonomy , dignity and respect for privacy. The discussions which ensued were lively and reflected the controversial nature of AT for people with dementia.


It was agreed that AT must be demystified and presented in a positive way, highlighting the potential benefits it can bring and the way that it can, first and foremost, improve the quality of life people with dementia, but also contribute towards the wellbeing of carers (e.g. helping reduce stress and burnout). At the same time, the group recognised the need to consider how AT might be used in ways which hinder rather than promote wellbeing and quality of life. Potential conflicts were acknowledged between various ethical principles such as autonomy, privacy and maleficence/beneficence.


The group concluded that it was not sufficient to simply highlight the ethical issues involved but that in addition the working group should develop an ethical framework for decision making including guidelines which could be used by individuals faced with ethical dilemmas but also by professional bodies and even governments interested in developing their own guidelines.


The next day, the results of this meeting were presented to some of the members of the Steering Committee (Michael Schmieder from whom the idea for the network stems, representatives from the German Federal Ministry of Health and the King Baudouin Foundation, experts in ethics and representatives from the Alzheimer Associations of the Czech Republic and Portugal) who were very enthusiastic about the work of the group. Updated information about ethical principles for the ethics section of Alzheimer Europe’s website was also approved and the discussion forum for ethical issues was presented. Work on the Dementia Ethics Network will continue and a publication, including guidelines, on the ethical use of AT will be ready by the end of the year.



Last Updated: vendredi 23 juillet 2010




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