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2009: Legislation relating to healthcare and decision making in dementia

Completed projects

Introduction

This project focused on legislation relating to healthcare and decision making in dementia. The main themes covered include informed consent, advance directives, access to information and the right to a diagnosis and end-of-life care.

Funding and Duration

This project was an integral part of the European Collaboration on Dementia (EuroCoDe) project Europe, which received funding from the European Union, in the framework of the Public Health Programme of the European Commission.

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

The project started in January 2009 and was completed in December 2009.

Objectives

The objective of this project was to make an inventory of legislation in each country relating to legal healthcare and decision making in 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 legal capacity and proxy decision making:

  • Irene Müller (VertretungsNetz – Recht), Austria
  • Philip Bentley, Belgium
  • Lora Ivanova, Bulgaria
  • Chris Messis, Cyprus
  • Iva Holmerová, Czech Republic
  • Daniela Bruthansova, Czech Republic
  • Dorthe Buss, Denmark
  • Sara Wilcox, England
  • Anna Mäki-Petäjä, Finland
  • Federico Palermiti (Fondation Médéric Alzheimer), France
  • Bénédicte Toussaint, France 
  • Bärbel Schönhof, Germany
  • Magda Tsolaki, Greece
  • Stefania Kapronczay (Hungarian  Civil Liberties Union), Hungary
  • Eleanor Edmond, Ireland
  • Marina Presti, Italy
  • Association Luxembourg Alzheimer, Luxembourg (Name?)
  • Charles Scerri, Malta
  • Maria Rosário Zincke dos Reis, Portugal (also for report on Malta)
  • Kees Blankman, the Netherlands
  • Eveline Heitink, the Netherlands
  • Berit A. Holmlimo, Norway
  • Miroslawa Wojciechowska, Poland
  • Paula Guimarães, Portugal
  • Maria Rosário Zincke dos Reis, Portugal
  • Maria Manuel Meruje, Portugal
  • Jan Killeen, Scotland
  • José María Núñez Centaño, Spain
  • Sten-Sture Lidén, Sweden
  • Marianne Wolfensberger, Switzerland
  • Sevki Sozen, Turkey

We would like to thank the above experts for their work as without them we would not have been able to do this study. They all contributed their time and effort freely. We would also like to reiterate our thanks to other experts who were involved in drafting the sections on advance directives.

  • Margaret Blaha, Austria (also for the original Lawnet report on Austria)
  • Antis Nömper, Estonia
  • Lydia Mathy, Germany
  • Ms Bettina Godschalk, Germany
  • Sigurd Sparr, Norway
  • Anna Rovira, Spain
  • Alberto Garcia Gómez, Spain
  • Pilar de Hoyoa, Spain

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 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 2009 which can be ordered from our website: http://www.alzheimer-europe.org/index.php/Publications/Dementia-in-Europe-Yearbooks

This report can also be consulted online at: http://www.alzheimer-europe.org/Alzheimer-Europe/Our-work/Completed-AE-projects/2009-Legislation-relating-to-healthcare-and-decision-making-in-dementia

 

 
 

Last Updated: mercredi 02 mai 2012

 

 
 

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