2011: The ethics of dementia research
This document is the second 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 2011 was the ethical issues linked to dementia research.
In this report, we explain what we mean by research, what kinds of research are carried out, what we mean by dementia research and ethical dementia research and how ethical principles and models can be applied to specific issues like dementia research. The report and recommendations cover medical research and social science research and address a number of key issues such as the involvement of people with dementia, informed consent, wellbeing, risk, burden, benefit and paternalism, brain donation and the dissemination of research findings. These topics apply to all types of research. Additional specific issues are covered in relation to medical research and end-of-life care research.
It is clear that these recommendations need to be applied to particular situations involving particular people because situations and people develop and change over time. For example, the ethical issues linked to the use of advance directives for research have only come into being in recent years as before that, such directives did not, and in many countries within Europe still do not, exist. Attitudes also change and thanks to the progress of both the dementia and the disability movement, people with dementia are no longer considered as passive recipients of care and treatment but rather as active participants with the same rights as other members of society. Such rights include the right to be treated with respect, the right to privacy and protection and also the right to participate in research.
These recommendations were developed within a particular cultural context and historical period. Such debates do not occur once and for all, resulting in clear instructions on how to behave thereafter. Hopefully, the paper will promote further discussion and encourage people to approach dementia research in a thoughtful and morally responsible way, based on an understanding of the main ethical issues involved, even or especially in the absence of clear legal obligations.
The overall goal of this project was to produce recommendations and a position on ethical dementia research through a process of reflection and group discussion. The group had three specific objectives:
To provide an overview of past and current ethical debates about issues linked to various aspects of dementia research,
To explain its position,
To provide recommendations, where possible, on a range of issues linked to dementia research.
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 2011 (once in Luxembourg and once in Brussels) 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 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 (in alphabetical order):
- Dr Peter Annas, Senior Research Scientist, PhD. and AstraZeneca’s representative in the PharmaCog project (and co-leader of the Ethics work package in the same project).
- Ms Angela Clayton-Turner, volunteer, carer and involved in selecting, monitoring and disseminating research for the Alzheimer’s Society and in ethical procedures for brain donations for research. She is also a lay member of her local Research Ethics Committee.
- Ms Julie Fraser, Editor, Dementia in Europe Magazine.
- Dr Thomas Frühwald, Senior physician of the Department of Acute Geriatry of the Hietzing Hospital in Vienna, Austria. Committee member of the Geriatric Medicine Section of the European Union of Medical Specialists. Board member (Vice President) of the Austrian Society of Geriatrics and Gerontology.
- Ms Dianne Gove, Information Officer at Alzheimer Europe, Luxembourg.
- Dr Fabrice Gzil, Head of Social Studies Department, Fondation Médéric Alzheimer in Paris, France. He recently produced ethical guidelines for researchers interested in obtaining funding for social sciences research.
- Associate Professor Iva Holmerová, Charles University, Centre of Gerontology in Prague, Czech Republic.
- Ms Sabine Jansen, Executive Director of the Deutsche Alzheimer Gesellschaft e.V. (the German Alzheimer Society).
- Mr James McKillop (MBE) and Mrs Maureen McKillop. James has taken part in several research studies and has been a member of several working groups within Alzheimer Europe (including the last ethics project). He is a founding member of the Scottish Dementia Working Group. James has dementia and Maureen is his wife and carer.
- Dr Carlo Petrini, Head of the Bioethics Unit of the National Institute of Health in Rome, Italy.
- Dr Rasa Ruseckiene, Consultant in adult and old age psychiatry, therapist, work experience in UK psychiatric hospitals, involved in project to promote psychiatric services in Lithuania.
- Prof. Sandro Sorbi, Professor of Neurology, Department of Neurological Science and Psychiatry at the University of Florence, Italy. He is responsible for coordinating the new EFNS guidelines on dementia with a section on the ethics of research.
- Prof. Dr Lieve Van den Block, senior founding member of the End-of-life care Research Group of Ghent University and the Vrije Universiteit Brussel and Professor of Communication and Education in Family Medicine at the Vrije Universiteit Brussel, Belgium.
Alzheimer Europe would also like to thank Prof. Mary Marshall (Emeritus Professor at the University of Stirling, Scotland) for commenting on the draft texts.
The result of this project is a report containing background information and recommendations on the ethical issues linked to dementia research. It also contains a sample consent form, a list of possible issues to be addressed in a participant information sheet and a list of issues which researchers and ethical committees might consider in the context of seeking or granting ethical approval and funding for dementia research.
The full report can be consulted on the Alzheimer Europe website at:
Last Updated: mercredi 09 mai 2012