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Alzheimer Europe Reports

2016 Discussion paper on ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease

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In this discussion paper, Alzheimer Europe’s Ethics Working Group reflects on a range of ethical issues linked to the recent changes in terminology surrounding Alzheimer’s disease (AD) and AD dementia.

The paper starts with an explanation of the context in which the definitions were developed and reflects on ethical issues linked to representations of health and disease. The paper then addresses issues of relevance to the individual, relationships and wider society (e.g. exploring the possible impact on personhood, citizenship, stigma, public awareness, policy making, diagnosis, healthcare and research).

In addition to the main issues discussed, the paper contains an annex with further details about the development of the terms and a glossary aimed at making the paper accessible to a wide audience. At the end of the paper, readers will find the group’s position on some of the key issues addressed.

2015 Alzheimer Europe Report: "Ethical dilemmas faced by health and social care professionals providing dementia care in care homes and hospital settings: a guide for use in the context of ongoing professional care training"

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This publication is about the kinds of ethically challenging situations and ethical dilemmas faced by health and social professionals of all levels who provide care for people with dementia in care homes and hospital settings. It contains short stories based on typical situations which professional carers might encounter, along with exercises and appendices to encourage and facilitate ethical reflection, structured guidance on how to tackle ethically challenging situations and commentaries from experts in the field of ethics as well as professional care.

The publication should ideally be used in the context of professional care training (e.g. with moderated group discussions, professional guidance and role playing) and adapted to the different levels of education and experience of the readers. It doesn’t provide ready-made answers but hopefully, in the context of ongoing professional training, it will contribute towards empowering and motivating health and social care professionals to provide ethical care, and tackling ethically challenging situations with more confidence, thereby contributing to the wellbeing of their clients, colleagues and themselves.

2015 Alzheimer Europe Report (FR): "Dilemmes éthiques rencontrés par les professionnels impliqués dans le soin et l’accompagnement des personnes ayant des troubles cognitifs en maison de retraite et à l’hôpital : un support pour la formation continue des professionnels"

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Cette brochure s’adresse à l’ensemble des professionnels des secteurs sanitaire, social et médico-social qui accompagnent des personnes ayant des troubles cognitifs. Elle porte sur les situations problématiques au plan éthique et sur les dilemmes éthiques que ces professionnels peuvent être amenés à rencontrer, que ce soit en maison de retraite ou dans un contexte hospitalier. De courts récits, inspirés de situations concrètes que les aidants professionnels rencontrent fréquemment, ainsi que des exercices et des annexes encouragent et facilitent la réflexion éthique. Une démarche structurée est proposée pour aborder les situations problématiques au plan éthique, ainsi que des commentaires émanant d’experts dans le domaine de l’éthique mais aussi de professionnels de l’accompagnement.

Cette brochure a vocation, en principe, à être utilisée dans la formation continue des professionnels (par exemple dans des groupes de discussion avec un modérateur, dans l’analyse des pratiques ou sous forme de jeu de rôles), et à être adaptée en fonction du degré de formation et d’expérience des lecteurs. Elle ne fournit pas des réponses toutes faites mais nous espérons qu’elle contribuera à motiver les professionnels du soin à prodiguer un accompagnement éthique, et qu’elle leur donnera des outils qui les rendront capables d’aborder avec davantage d’assurance les situations problématiques au plan éthique, et que ce faisant elle améliorera le bienêtre des personnes aidées, mais aussi celui des professionnels et de leurs collègues.

2014 Alzheimer Europe Report: "Improving continence care for people with dementia living at home"

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This report, "Improving continence care for people with dementia living at home" explores the needs of people with dementia living at home and trying to tackle continence problems, often together with their relatives and close friends. This is an area which has been little researched. Moreover, much of the guidance available is geared towards the residential care setting. At the same time, professional carers
dealing with people with dementia and continence problems living at home, are not always familiar with the specific issues that people with dementia and their carers face (e.g. in terms of the psychological, social, physical, economic and financial impact). For these reasons, we hope that this publication will be a valuable resource for people with dementia, carers, health and social care providers, service providers and policy makers alike.

2014 Alzheimer Europe Report: "Ethical dilemmas faced by carers and people with dementia"

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Ethical dilemmas often arise as a consequence of having dementia or caring for a person with dementia, which are difficult to resolve. Sometimes problems seem insurmountable and it is difficult to decide what to do because it is not clear what is right or wrong, ethically speaking. This report entitled "Ethical dilemmas faced by carers and people with dementia" is intended to help people with dementia and their carers to understand ethical dilemmas, approach them more confidently and feel more at ease with any decisions that might be made.

The report sets the scene by providing background information about dementia, ethics and dilemmas and then presents a series of short stories (vignettes) which describe typical ethical dilemmas based on the literature and the expertise of the European Working Group of People with Dementia (EWGPWD).

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 (see below for German version).

2008 Alzheimer Europe Report (DE): Pflege und Betreuung von Menschen mit Demenz am Lebensende

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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. The German version was translated by our German member, the Deutsche Alzheimer Gesellschaft (DAlzG). Alzheimer Europe thanks the DAlzG for its support.

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: Monday 05 December 2016

 
 
 

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