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Alzheimer Europe Reports

2013 Alzheimer Europe Report: "The ethical issues linked to the perceptions and portrayal of dementia and people with dementia"

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This report entitled "The ethical issues linked to the perceptions and portrayal of dementia and people with dementia" looks at the many different ways that people make sense of dementia. It covers perceptions associated with the experience of dementia, the cause of dementia and the possible implications of dementia on individuals and society.

There are also sections of the use of metaphor and on the portrayal of dementia in the media and films. Each section contains details of the reflection by the multi-disciplinary working group on ethical implications for people with dementia of being perceived and portrayed in a particular way.

We consider how people with dementia feel about dementia and about the way they are perceived within society. The report ends with a set of guidelines on things to consider when writing about or portraying dementia and people with dementia.

2012 Alzheimer Europe Report: "The ethical issues linked to restrictions of freedom of people with dementia"

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This report addresses the ethical issues surrounding the loss of freedom which many people experience as a result of having dementia. Such restrictions include those relating to residence or place of stay (i.e. involuntary detention or attendance in nursing homes, hospitals and day care centres), to the use of various forms of restraint (i.e. physical, chemical, psychological and environmental), to the right to live one's life according to one's values, preferences and lifestyle and finally, to the right to play an active role in society (e.g. marrying, voting, making a will and driving).

Most of these issues have already been explored by Alzheimer Europe insofar as they relate to legislation and clearly the right to live a life that is free from unjust, inappropriate or unnecessary restrictions is often both a legal and ethical issue. However, in this report, we focus on the ethical implications of various restrictions of freedom, drawing biomedical principles (e.g. respect for autonomy, beneficence, nonmaleficence and justice) as well as more care-related factors such as the importance of relationships, solidarity, wellbeing and dignity.

2011 Alzheimer Europe Report: "The ethics of dementia research"

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This report addresses some of the main ethical issues linked to carrying out dementia research in an ethical manner. In producing this report, the multidisciplinary working group had three main objectives, namely to provide an overview of past and current ethical debates about issues linked to various aspects of dementia research, to explain its position and to provide recommendations, where possible, on a range of issues linked to dementia research. The report covers all kinds of research in the medical and social science domains and is targeted at researchers and anyone with an interest in ensuring that dementia research is carried out in ethical manner (e.g. those commissioning or funding research, ethics committees and Alzheimer associations). We feel that it might also be of interest to many people taking part in research (i.e. including people with dementia). Although the format is rather dense, it is clearly divided up into numerous short sections.

2011 Alzheimer Europe Survey: The Value of Knowing

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 This survey, carried out in four countries in Europe (France, Germany,
Poland and Spain) and the US, examined public perceptions of Alzheimer’s
disease (AD) and views on the value of diagnosis.

this survey is available in English, French, German, Spanish and Polish.

2010 Alzheimer Europe Report: "The ethical issues linked to the use of assistive technology in dementia care"

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This publication examines the ethical issues linked to the use of assistive technology for/by people with dementia. 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 literature) which addresses not only possible disadvantages 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. Alzheimer Europe presents its position and guidelines on the ethical use of AT for/by people with dementia and proposes an ethical framework for decision making. 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.

2008 Alzheimer Europe Report: "End-of-life care for people with dementia"

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The Alzheimer Europe position and recommendations on end-of-life care is a practical guide for all those involved in this delicate and demanding stage of dementia. The working group, led by Dr Sigurd Sparr (Head of Geriatrics, University Hospital of Tromso, Norway) consisted of experts in the field of Alzheimer's disease and/or palliative care, representatives from Alzheimer associations and carers from different European countries. This publication is available in English and German

2006 Alzheimer Europe Report: "The use of advance directives by people with dementia"

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This publication contains Alzheimer Europe's position on advance directives and provides background information on the legal, ethical, medical and personal and practical issues surrounding the use of advance directives in the case of dementia. This is followed by a summary of the legal status of advance directives in 15 EU members states and in Switzerland and Norway.

2006 Alzheimer Europe Survey: Who cares? The state of dementia care in Europe

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This report presents the results of a survey carried out by Alzheimer Europe and its members organisations in France, Germany, Poland, Scotland and Spain and gives a voice to more than 1,000 people caring for a person with dementia who took part in the survey. This survey was conducted in collaboration with Lundbeck. The results paint a shocking picture of the level of commitment required from carers, since half of the carers surveyed cared for the person with demetia for more than 10 hours each day. The survey also revealed a significant lack of information provision to dementia carers at the time of diagnosis, a lack of basic support services and the need of carers to contribute financially to existing services.

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Last Updated: vendredi 14 novembre 2014



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