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Decision making, participation and involvement

Provision of care and rights

The legislation or National Standards, in several countries, give a particular emphasis to the residents’ right to autonomy and independence, highlighting that residents should be enabled and supported in making decisions about their daily lives and in exercising control over their lives (e.g. Belgium Flanders, Czech Republic, Finland, Germany, Ireland, Latvia, Lithuania, Malta, Netherlands, Slovenia, and the UK). In addition, in some countries, it is stated that residents should be encouraged and supported to participate in the daily life of the facility and supported in expressing their views and opinions about the care and services that they receive (e.g. Belgium, Finland, France, Germany, Hungary, Ireland, Turkey, UK).

Some examples of how this is addressed include:

  • Finland: care must be provided so that residents can feel that they are living a safe, meaningful and dignified life, and that can participate in meaningful activities promoting and maintaining their wellbeing, health and functional capacity.
  • Ireland: residents are actively involved in determining the services they receive and are empowered to exercise their human and individual rights including the right to be treated equally in the allocation of services and supports, the right to refuse a service or some element of a service and the right to exit a particular service or be transferred to another service. Residents make their own choices, participate in the running of services and contribute to the life of the community, in accordance with their wishes.
  • —Malta: the licensee shall operate the home so as to maximise residents’ capacity to exercise personal autonomy and choice. Residents and/or their representatives shall be given access to information on how to obtain the necessary legal advice regarding the assessment of mental capacity, the appointment of a representative, and the preparation of a will.
  • —Netherlands: residents have the opportunity to maintain as much self-control over their lives as possible. Staff weigh the safety risks against the quality of life with the resident and his/her family.
  • —Slovenia: staff should respect the person’s autonomy and individuality. The individual should, for as long as possible, make his/her own decisions about his/her life and support he/she receives.
  • UK (England): providers should support the autonomy, independence and involvement in the community of the service user.
  • —UK (Wales): the registered person conducts the home so as to maximise service users’ capacity to exercise personal autonomy and choice.
  • —UK (Scotland): standard 17 “You make choices and decisions about day-to-day aspects of your life and about how you spend your time” and standard 11 “You are encouraged to express your views on any aspects of the care home at any time”.

The National Standards in the UK (Northern Ireland, Wales and Scotland) also make reference to the residents’ civic rights as for example the right to vote and participate in all aspects of political processes, and that these should be respected, upheld and facilitated where necessary. In Hungary, residents can appeal to independent legal representatives who regularly visit them and who help to protect the residents’ rights.

In some countries (e.g. Belgium, France, Germany[58], Hungary and Lithuania) residential care facilities should set up a residents’ committee composed of residents and relatives, which provides suggestions or advice regarding the services and care provided. In Belgium (Flanders), the residential care facility should always ensure that at least half of the people attending the meeting are residents. In Lithuania, residential care facilities have a Board consisting of residents, legal guardians, family members or close relatives, staff representatives, representatives of other institutions, non-governmental organisations and representatives of the community where the facility is located. The composition of the board is periodically reviewed and updated.

There are also quite comprehensive descriptions across the relevant laws and National Standards about the right of the resident to make a complaint and the existence of clear procedure for this. In Ireland, Turkey and the UK, residents should be supported in accessing independent advocacy services.

Footnote:

58     This is stipulated in guidelines which are not compulsory.

 

 

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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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