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1996-1998: Care Manual

Completed AE projects

Introduction

Dementia affects people in different ways and carers are often faced with situations for which they were not adequately prepared. Support from friends and family is important. Alzheimer Associations can also play a role in helping people with dementia and their carers to cope. Readily available information on the disease and on caring is crucial. Whereas in certain countries there is a wealth of information about caring for someone with dementia, in others there is very little. Alzheimer Europe wanted to facilitate the sharing of existing knowledge and experience of Alzheimer associations throughout Europe.

Funding and duration

In 1996, Alzheimer Europe received a grant from the European Commission under the programme “Actions in favour of people suffering from neurodegenerative diseases, more particularly Alzheimer type (DAT) and related disorders and their (informal) carers” to write a European Care Manual for the informal carers of people with dementia . The project started on 1 December 1996 and was finished on 1 June 1998.

Participants

Several of Alzheimer Europe’s member associations were involved in the drafting of the Care Manual which was written in English. These were:

  • Austria:Alzheimer Angehörige Austria
  • Belgium: Ligue Alzheimer
  • Denmark: Alzheimerforeningen
  • Italy: Federazione Alzheimer Italia
  • Luxembourg: Association Luxembourg Alzheimer
  • Spain: Fundacion Alzheimer España
  • United Kingdom: the Alzheimer's Society

Objectives

The aim of the Care Manual project was to collect all available documentation about caring for a person with dementia at home from our member associations, make a concise summary of the main issues and produce a manual which would be useful to informal carers throughout Europe, particularly in those countries where information was not as readily available.

Methodology

Numerous drafts of the manual were written, discussed and amended by participants in the project during a series of meetings held in Luxembourg and by the usual means of communication. Feedback was also obtained from our other member associations. A final draft was eventually agreed upon, which was divided into five sections:

  • Introduction (general information about dementia and Alzheimer's disease)
  • Onset of the disease
  • Changing needs (various care related issues)
  • Coping with caring (looking after the carer)
  • National section (relevant information about legal issues, benefits and services)

The final version of the Care Manual was then translated into the official languages of the European Union (with the exception of Swedish), as well as into Turkish. Translations were either carried out by our member associations or in collaboration with them.

Results

The Care Manual is now available in the official languages of the European Union (with the exception of Swedish) and Turkish. It has been published in Danish, French, German, Greek, Italian, Portuguese and Turkish. The published versions of the Care Manual can be obtained from Alzheimer Europe or through its member associations in the relevant countries. The first four sections are available in English on this site in the sections Information on dementia and Tips for carers.

 

 
 

Last Updated: mercredi 25 avril 2012

 

 
 

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