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2011: Legislation relating to restrictions of freedom

Completed AE projects

Introduction

This project focused on legislation relating to various forms of restriction of freedom sometimes experienced by people with dementia. Three main themes are covered, namely involuntary internment, coercive measures (including mistreatment and abuse) and restrictions linked to the right to drive.

Involuntary internment is the term used to describe the situation whereby a person is obliged by law to reside in some form of institution. Usually, the grounds for this restriction of liberty are that the person has a mental disorder and is considered as a danger to him/herself or others. National laws are often ill-suited to the needs of people with dementia. In some countries, it only concerns internment in a psychiatric institution or ward which is not the ideal place to provide appropriate care and support for people with dementia.

The term “coercive measures” denotes methods that are used to restrain a person which involve restraint, force or threat.  Examples would include bed rails, chair and bed belts, threatening behaviour or words, various electronic devices and the use of tranquilisers. Sometimes, coercive measures can be quite subtle such as forcing people to wear sleeping attire thereby making many people feel unable to leave the building. The use of coercive measures can sometimes be justified (e.g. to prevent a person from harming him/herself or others, or to enable medical staff to administer necessary medication or treatment). However, these measures infringe on people’s personal liberty which is a fundamental human right. Consequently, their use must be closely monitored. In the case of people with dementia, many of whom are older and frail, many forms of coercion are increasingly considered as abusive and to be avoided if at all possible. There is even evidence that the use of certain forms of restraint can increase the likelihood of falls or harm.

The withdrawal of one’s driving licence (or limitations on its use) is also perceived as a restriction of freedom of movement by many people with dementia. No longer having the opportunity to drive often entails a gradual restriction of one’s activities and social contacts. In the sections on driving, we look at the legal regulations and processes governing the renewal and withdrawal of driving licences.

Funding and Duration

This project was part of the 2011 Work Plan of Alzheimer Europe, which received funding from the European Union, in the framework of the Health Programme.

Alzheimer Europe also gratefully acknowledges the support it received from Fondation Médéric Alzheimer for this project.

The project started in January 2011 and was completed in December 2011.

Objectives

The objective of this project was to make an inventory of legislation in each country relating to restrictions of freedom of people with dementia.  It is hoped that such information will contribute towards a greater awareness of the legal provisions relating to people with dementia throughout Europe, enable a comparison of the weaknesses and strengths of legislation insofar as this represents the kind of protection and rights accorded to people with dementia, highlight areas needing attention and provide examples of “good legal provisions” which might eventually contribute towards future legal reform in other countries. 

Methodology

A legal expert from each country covered in the report was contacted and asked to assist in the preparation of a legal report for his/her country.  Alzheimer Europe then carried out the ground work and provided the legal expert with an initial report in which all legislation relating to restrictions of freedom were described. This information was obtained mainly from sources publicly available on the Internet (e.g. legal databases and websites of national Ministries of Justice or Health). The information was organised in the same way for each country according to a set list of titles covering the main themes and several sub-themes.  For a couple of countries, no information whatsoever was publicly available in English, French or German and it was therefore necessary for the legal expert to write the whole report.

The legal expert then checked the accuracy of the information, made corrections where necessary, added additional information and in some cases made comments about the actual applicability of the law (e.g. whether the law corresponds to the particular situation of people with dementia and whether it is enforced).

Participants

The following legal experts were responsible for writing, updating and/or checking the reports on restrictions of liberty:

  • Irene Müller (VertretungsNetz – Recht), Austria
  • Philip Bentley, for Ligue Alzheimer ASBL, Belgium
  • Lora Ivanova, Bulgaria
  • Iva Holmerová, Czech Republic
  • Daniela Bruthansova, Czech Republic
  • Søren Sørensen, Denmark
  • Sara Wilcox, England (report from 2007)
  • Anna Mäki-Petäjä, Finland
  • Harold Kasprzak (Fondation Médéric Alzheimer), France
  • Fabrice Gzil (Fondation Médéric Alzheimer), France
  • Federico Palermini (Association Monégasque pour la Recherche sur la Maladie d’Alzheimer), Monaco
  • Bärbel Schönhof, Germany
  • Magda Tsolaki, Greece
  • Siaperra Vasiliki, Greece
  • Stefania Kapronczay (Hungarian Civil Liberties Union), Hungary
  • Eleanor Edmond, Ireland
  • Marina Presti, Italy
  • Simona Urbaitytė, Legal Adviser to MEP Vilija Blinkevičiūtė, Lithuania  
  • Carine Federspiel, Luxembourg
  • Charles Scerri, Malta
  • Maria Rosário Zincke dos Reis, Portugal (also for report on Malta)
  • Kees Blankman, the Netherlands
  • Herman Post, the Netherlands
  • Liv Anita Brekke, Norway
  • Miroslawa Wojciechowska, Poland
  • Maria Rosário Zincke dos Reis, Portugal
  • Jan Killeen, Scotland
  • Hillary Patrick, Scotland
  • Sten-Sture Lidén, Sweden
  • Marianne Wolfensberger, Switzerland
  • Murat Özsunay, Turkey

Alzheimer Europe is extremely grateful to the above experts without whom it would not have been possible to carry out this project.  Some of the experts not only had the necessary legal expertise but also had experience in the domain of dementia. All contributed their expertise freely.

Results

The result of this project is a series of 32 national reports which describe in detail (in English) the legal provisions covering restrictions of freedom of people with dementia, covering three main topics, namely, involuntary internment, coercive measures and restrictions linked to driving. All countries of the European Union (except Spain) are covered. There are separate reports for England and Scotland as some of the laws are different in each country. In addition, there are reports for Croatia, Iceland, Norway, Switzerland and Turkey. These reports can be found in the Dementia in Europe Yearbook 2011 which can be ordered from our website: http://www.alzheimer-europe.org/index.php/Publications/Dementia-in-Europe-Yearbooks

It is also possible to consult this report online at:  http://www.alzheimer-europe.org/Policy-in-Practice2/Country-comparisons/Restrictions-of-freedom

 

 
 

Last Updated: mercredi 02 mai 2012

 

 
 

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