2012: The ethical issues linked to restrictions of freedom of people with dementia
This report entitled “Ethical issues linked to restrictions of freedom of people with dementia” 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 wishes 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 on 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.
We attempt to provide an overview of some of the main ethical arguments and dilemmas found in the literature on this topic and propose recommendations based on group reflection and discussion within the expert group. These are not definitive recommendations about which course of action or approach is always right as the right decision will depend on a range of factors including, first and foremost, the needs and wishes of the person with dementia but also of carers and healthcare professionals. As with previous reports, we hope that this publication will lead to further reflection on the issues covered at all levels from informal carers and healthcare professionals to policy makers and representatives of the legal system.
I would like to thank Dianne Gove, Chair of the working group, for carrying out the literature review and drafting the text. I would also I would like to express my gratitude to the members of the multidisciplinary working group who engaged in two full days of group discussion on these topics and developed over the space of a year the various drafts which led to this final report. The members of the group are (in alphabetical order): Antonio Burgueño Torijano, Eleanor Edmond, Brenda Frederiks, Chris Gastmans, Dianne Gove (Chair), Fabrice Gzil, Jan Killeen, Anna Maki-Petäjä-Leinonen, James and Maureen McKillop, Marianna Siapera and Maria do Rosário Zincke dos Reis. The members of the working group, whose affiliations and titles can be found in section 1.2 of this report, were from a range of professional backgrounds including ethics, law, theology, medicine, disability, research, policy, mental capacity and psychology. We were also pleased to involve James McKillop who has dementia and Maureen McKillop who is his wife and carer.
I wish you an interesting read and hope that you will not hesitate to share your thoughts and reflections with us on any of the topics covered.
Heike von Lützau-Hohlbein
Last Updated: Tuesday 14 May 2013