European Dementia Ethics Network
At the French Presidency Conference on Alzheimer's disease in 2008, President Sarkozy highlighted the need for Member States of the European Union to have an exchange on some of the ethical challenges posed by dementia and advocated the creation of a European network for this purpose. This recognition of the importance of the ethical aspects of dementia was echoed in the European Commission's Alzheimer's initiative and a common reflection on dementia ethics was highlighted as a one of the priority areas for European collaboration.
In parallel to these developments, a series of meetings involving representatives of the German Health Ministry (Dr. Christian Berringer, Ms. Cornelia Reitberger and Dr. Matthias von Schwanenflügel), as well as Michael Schmieder of Stiftung Sonnweid, Sabine Jansen of the German Alzheimer’s association and Jean Georges of Alzheimer Europe, took place to explore the setting up of a European Dementia Ethics Network. This concept was further developed and discussed at a workshop in Berlin on 1 September 2008. The workshop was attended by some 40 experts who were enthusiastic about the prospect of greater collaboration on dementia ethics. The role of Michael Schmieder, the director of Sonnweid, a care facility in Switzerland, must also be acknowledged as he put forward the concept of a network based on the need for family and professional carers to find support when faced with ethical dilemmas.
Thanks to initial funding (EUR 60,000) from the German Health Ministry, the network was created and became operational in 2009 when the first working group and steering committee were set up to address the ethical issues linked to the use of assistive technology for and by people with dementia. Once established, the network was able to continue and has since relied on core funding from Alzheimer Europe. To date, the working groups have addressed ethical issues linked to dementia research, restriction of freedom, perceptions and the portrayal of dementia, and is currently working on a guide to help carers and people with dementia to address ethical dilemmas they may experience as a result of living with dementia.
Last Updated: mardi 12 août 2014