2007: Social support systems
Between January 2006 and October 2007, as part of its work on the three-year “EuroCoDe” (European Collaboration on Dementia) project, Alzheimer Europe carried out a survey into the level of social support provided to people with dementia and their carers in the member states of the European Union, as well as in Switzerland, Norway and Iceland. This was just one part of the overall project which also involves the development of consensual prevalence rates, guidelines on diagnosis and treatment, guidelines on non-pharmacological treatments, recommendations on risk factors and prevention strategies and an analysis of the socio-economic cost of Alzheimer’s disease.
The working group and national experts
The survey on social support systems in Europe was organised and carried out by members of a working group headed by Alzheimer Europe consisting of the following members:
- Dianne Gove from Alzheimer Europe
- Federico Palermiti from the Fondation Médéric Alzheimer
- Hans-Jürgen Freter from the Deutsche Alzheimer Gesellschaft in Germany
- Letitia Dobrancici from Societatea Alzheimer, the Romanian Alzheimer Association
- Louise McCabe from Stirling University in Scotland (representing Alzheimer Scotland)
- Maria Do Rosarió Dos Reis Zincke from APFADA, the Portuguese Alzheimer Association
- Sabine Henry from La Ligue Alzheimer in Belgium
- Sirkkaliisa Heimonen from the Ikäinstituutti, Age Institute (representing Alzheimer Keskusliitto, Finland)
The actual information contained in the following country reports was mainly provided by Alzheimer Europe’s member associations. For some countries, it was provided by external experts. Their names and organisations can be found in the footnote on the first page of each country report.
The working group drafted, piloted and refined the questionnaire together on the basis of regular email contact, three working group meetings and one steering committee meeting. The questionnaire, which was written in English and divided into two parts, was completed by one person in each of the countries covered. However, in many cases, that person worked in collaboration with other experts in the relevant domains.
Responses were received in English, French, German and Spanish. The information received was then transferred into a national report, circulated amongst the working group and refined over a period of seven months with the help of the person who had completed the questionnaire.
The country reports
In this study, we have used the term social support to refer to resources and/or services to help carers and people with dementia cope with the practical and social consequences of the disease on their daily lives. This could include psychological, social, physical and financial support, various types of care such as palliative care, nursing care and respite care, and employment related support for carers. Nursing care is included only insofar as it relates to dementia e.g. dealing with bedsores, incontinence or taking tablets. We realise that this definition of social support may differ considerably from one country to the next but have nevertheless included this wide range of support for all countries covered by the Eurocode survey.
The term “carer” has been used to refer to informal caregivers e.g. relatives and friends who take care of the person with dementia. In some countries, non-married couples and same sex partners are entitled to the same rights as married couples (e.g. for special leave), but in many cases, this is not specified and possibly not the case. Informal caring is usually done on a voluntary basis without payment although some carers might not feel that they actually had any choice in becoming a carer and some might receive some form of payment from the state for the care they provide. The term does not refer to professional carers such as doctors, nurses, social workers and home care workers etc.
Structure and content of the country reports
The country reports are divided into two sections.
Part 1 of each national report covers the organisation and funding of social support for people with dementia, and the legislative framework surrounding the provision of social support. It also contains information from the Alzheimer associations or experts on barriers to the social support provided e.g. based on age, disability, place of residence or type of disease etc. and whether the social support available was, in their opinion, adequate and suited to the specific needs of people with dementia and their carers.
Part 2 covers the actual availability of specific forms of support i.e. specific services, benefits and legal entitlement to leave etc. It contains information about the existence of such support, who pays for it and whether there are alternative sources of support (other than from the state) e.g. from voluntary associations, religious groups and NGOs.
The working group decided not to include comparative tables summarising which services were available in which countries as they felt that this could be misleading and open to misinterpretation. There were two main reasons for this: 1. the availability of certain services, such as day care centres, is sometimes extremely limited (e.g. only a couple of centres in the whole country) and 2. sometimes, services are available but there are barriers to access, such as disability status, geographical distance, the existence of family carers or high costs, which means that only a fraction of people with dementia can benefit from them. For example, they felt that stating that day care centres exist in a particular country, when in fact there are only two in the whole country, would be misleading. Similarly, the existence of particular support is of no use if people cannot access it for various reasons.
We asked respondents whether, in their opinion, specific services were sufficient. This enabled them to provide a more complete picture of the actual level of support available to people with dementia. However, it should be borne in mind that such information is based on their subjective experience and work with family carers, as well as their familiarity with the provision and level of social support within their country. Many respondents provided additional information where they felt that it was important to do so, e.g. if long-term residential care exists but staff are not trained to deal with people with dementia, if specific services are totally financed by service users or if services do not correspond to the needs of people with dementia, such as delivering meals but not ensuring that people with dementia are able to eat them.
Limitations to the national reports
Although national Alzheimer associations are ideally placed to know about the existence of support for people with dementia and carers, they cannot guarantee to have covered every single service available. A controlled nation-wide study involving the quantification of all existing services was beyond the scope of this project.
Moreover, the national Alzheimer associations and external experts were keen to point out the following limitations.
- In some countries, the organisation and financing of social support differs from one state or county to the next. In such cases, respondents have tried to give a general overview of the availability of support, in some cases including examples of services available in specific states or counties.
- Services are sometimes project based, which means that their existence may be limited, that they are not widely available and that they may end when funding is withdrawn or runs out.
- Some services are only offered at local level. In countries where local councils are responsible for the provision of services, there may be huge differences in actual availability across the whole country.
- Some of the smaller Alzheimer organisations with limited funds and personnel were unable to access the necessary expertise, particularly in the field of law and employment.
The next step
The next stage of the project is to compare the results obtained from the survey in order to determine the extent to which social support in Europe is suited to the needs of people with dementia and their carers.
On reading through the various country reports it is already clear that social support for people with dementia varies greatly from one country to the next. In some countries, considerable effort is made to enable people with dementia to continue living in their own homes whereas in others, for people who can no longer manage to live within the community, the only option is to move into an institution. It also becomes clear that certain services such as palliative care, advice on continence, companionship and social activities, sitting services and the use of tele-alarm monitoring systems are, with a few exceptions, insufficient.
Recommendations on how to improve social support, along with examples of good practice, will be finalised next year and the results should be available from Alzheimer Europe in December 2008.
Alzheimer Europe would like to thank the members of the working group, Alzheimer associations and external exports for all the work they put into writing these reports. If readers have any questions or comments about the information on social support in specific countries, they are welcome to contact Alzheimer Europe (firstname.lastname@example.org) which will forward any questions or comments to the relevant Alzheimer association or external expert..
Finally, Alzheimer Europe would like to express its gratitude to the European Commission and the Fondation Médéric Alzheimer for financially supporting this project.
Last Updated: Friday 08 July 2016