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Appendix

2017: Standards for Residential Care Facilities

The questionnaire used to collect the information for this report was drafted on the basis of discussions during a meeting with 23 representatives of AE member organisations (i.e. national Alzheimer associations) from 19 different European countries on 1 March 2017. A number of concerns were raised in this meeting which were taken into account and guided the approach and development of the questionnaire:

  • Firstly, it was decided that a description of the different types of residential care facilities in each country was beyond the scope of the report. This type of information has been already covered in other reports. For example, information about long-term care facilities in Europe including availability of beds, type of long-term care facilities, organisational status and funding can be found in the report produced by the PACE project “Palliative care systems and current practices in long-term care facilities in Europe” (Froggatt et al., 2017). For the purpose of this report, the following definition was agreed “a collective institutional setting where care is provided for older people who live there, 24 hours a day, seven days a week, for an undefined period of time. The care provided includes on-site provision of personal assistance with activities of daily living. Nursing and medical care may be provided on-site or by nursing and medical professionals working from an organisation external to the setting”. (Froggatt et al., 2017, p.3). This definition includes nursing and (residential) care homes. Independent and assisted housing, sheltered housing, respite care and day care centres are not addressed in the report.
  • —Secondly, it was anticipated that most countries would not have a legislative framework for residential care facilities providing care specifically to people with dementia. Therefore, it was decided to ask about the framework that is applicable to the residential care facilities which provide care to people with dementia in the country. This is most often, residential care facilities for older people and in addition, in some cases, facilities for people with disabilities, mental health problems or people with dependency  needs.
  • —Finally, some countries have a single document (often called National or Minimum Standards) where all or most of these issues are addressed. However, several countries do not have such a document and the information is spread across several other documents and laws. This was taken into account in the design of the questionnaire.

The questionnaire was developed by AE staff with support from five representatives from AE member organisations who provided feedback and suggestions on the draft questionnaire. The initial plan of work was presented to the European Working Group of People with Dementia (EWGPWD). The final questionnaire was then sent to all AE members in April 2017 for completion. In countries where AE has no members (i.e. Latvia and Lithuania), or in cases where AE members could not provide the information, other national experts were identified by AE and invited to participate. In addition, relevant literature, national standards and laws, which were available online in English, were also reviewed.

The information for each country was completed by the national Alzheimer association and/or other relevant expert(s) and was sent back to AE. The list of national experts who contributed to the each national report is available in the acknowledgements section. Most countries provided information which applies to the whole country. However, a slightly different approach was taken in some countries:

  • In Belgium, separate reports were provided for Wallonia and Flanders. Likewise, in the United Kingdom (UK) separate reports were provided for England, Northern Ireland, Wales and Scotland. This approach was taken as, in both countries, the relevant laws and policies are quite distinct in the different parts of the country. For these two countries, it is specified in the report whether the information refers to the whole country (when there is reference just to the country, i.e. the UK or Belgium) or parts of the country (e.g. in this case there is reference to the country and the parts to which the statement applies e.g. UK – England and Wales).
  • —In the case of Austria, Italy, Germany, Spain and Switzerland, whereas some provisions may exist at national level, the legislation related to residential care is developed at regional level and each of the regions has specific requirements/standards (e.g. Länder in the case of Austria and Germany, Comunidades Áutonomas in Spain and Cantons in Switzerland). As it would have been impossible to cover the existing regulation for all regions, where appropriate, some of these countries provided information on the regulatory requirements in one of these regions (e.g. State of Baden-Württemberg, Comunidad Autónoma de Madrid and Canton of Zurich respectively). These were chosen as they are among the largest and most populated regions in these countries.

Once all the national information was compiled, the comparative report was written following an iterative process. A first draft of the comparative report was drafted by AE based on the analysis of the information on the 33 questionnaires that were returned to AE. The first draft of the report was then circulated among all participating countries, which provided feedback and amendments where necessary. All suggestions and comments were addressed and incorporated in the comparative report. The final text was then sent to all participating countries for approval. In addition, members of the EWGPWD were invited to share their experiences with and views on each of the topics addressed in the report by providing a short written testimonial (“personal accounts”).

 

 

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Last Updated: Friday 31 January 2020

 

 
  • Acknowledgements

    This Dementia in Europe Yearbook received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.
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