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Social Support Systems

European Collaboration on Dementia

Introduction

There are many different forms of dementia of which Alzheimer’s disease is the most common. Dementia is not actually a disease but rather a set of symptoms (or a syndrome in medical terms). It involves progressive damage to the brain and causes a gradual deterioration of people’s functional capacity as well as changes in their roles, responsibilities and social relations. All these changes and losses affect the person’s identity and sense of self. Dementia affects other people too i.e. relatives and others in the person’s social network. As the disease progresses, effects become increasingly evident and the person with dementia becomes more dependent on other people for help and support.

There are currently over 6 million people with dementia in the European Union[1] and it is predicted that this number will double in the next 20 years[2] along with the ageing of the population. There are also millions of carers, often elderly people with limited resources, who care for people with dementia at home to the best of their ability with varying levels of support from the State. In some countries, support from the State for people with dementia and carers (e.g. in the form of services, allowances and care structures) is quite well developed whereas in others, it is virtually non-inexistent. Alzheimer Europe has carried out a survey in the framework of the 3-year EC-funded “EuroCoDe” project to investigate the kind of social support[3] available to people with dementia and carers in Europe and to write recommendations to policymakers on the basis of its findings.

The EuroCoDe survey was carried out in 2007 with the help of its national member associations and a few external experts. Individual national reports[4] were produced as well as a comparative document[5] of the overall findings. These findings reflected the general availability of services and support at that time; they were not a measure of the number of individual services or the quality of such services. Nevertheless, respondents provided additional information about problems linked to the provision of such services e.g. barriers to access, overall availability, how services are funded and the extent to which available services are suited to the specific needs of people with dementia.

It should be noted that the responses to the survey reflected the views of representatives of Alzheimer associations and in some cases external experts who were nevertheless linked to the associations. As such, it could be argued that these were subjective views but on the other hand, the Alzheimer associations and associated experts are ideally placed to understand the kind of support that people with dementia and carers need and to consider these needs in the light of the available services.

We recognise that policy makers in Europe are at various stages in the development of good quality social support to people with dementia and carers. These recommendations should be understood as representing an optimal situation which policy makers should aim to achieve.

This document contains an executive summary of the recommendations to improve the provision of social support to people with dementia and carers. This is followed by a more complete presentation of the important issues which we feel should be considered when providing such support and finally a collection of examples of good practice.

[1] Alzheimer Europe (2006), Dementia in Europe Yearbook 2006, Alzheimer Europe

[2] Ferri et al. (2005), Global prevalence of dementia: a Delphi consensus study, the Lancet, vol. 366, 2112-2117

[3] Please refer to Section 6 for a brief glossary containing definitions of social support and carers and for a list of the members of the working group.

[4] Alzheimer Europe (2007), Dementia in Europe Yearbook 2007, Alzheimer Europe

[5] Alzheimer Europe (2008), Comparative report on the level of social support provided to people with dementia and their carers in Europe, Alzheimer Europe

 

 
 

Last Updated: jeudi 13 août 2009

 

 
 

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