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Human rights and legal aspects

2020: European Dementia Monitor, Comparing and benchmarking national dementia strategies and policies

5 Human rights and legal aspects

5.1 Legal Issues

5.1.1 What did we look at and why?

Information on legal issues can serve to empower people with dementia and their carers by ensuring that they are aware of their rights and of certain legal measures designed to offer some form of protection. With regard to healthcare decision making by people with dementia, our survey looked at issues such as the use of advance directives, consent, health care proxies, and financial proxies. Alzheimer Europe asked member associations to answer the following questions on legal issues in their country:

  1. Is there a legal framework for advance directives?
  2. Are there legal mechanisms for people to appoint or to have appointed health care proxies?
  3. Are there legal mechanisms for people to appoint or to have appointed financial proxies?

Alzheimer Europe also examined whether people under guardianship or with limited legal capacity were protected from losing the right to vote, primarily using reports of the Fundamental Rights Agency (for EU countries).

5.1.2 Results

Table 9 provides the full results of the country responses. 

Overall, the findings from countries were broadly positive, with eight countries (Austria, Croatia, Israel, Italy, Turkey, UK- England and Scotland) scoring full marks in this section, an increase of two countries compared with 2017. Additionally, slightly more than half of countries scored 75%, having three of the four legal mechanisms in place.  

As can be seen from figure 12, the majority of countries have legal provisions for at least one of advance directives, health proxies or financial proxies. By contrast, less than a third of countries protect the voting rights of persons under guardianship or who have been deemed to have lost capacity.

5.1.3 How did we score countries?

Countries could score a maximum of 4 points. Countries were scored 1 point if the different legal safeguards and mechanisms were in place for people with dementia in the country.

Based on the results, it is possible to rank European countries as indicated in figure 13, which shows the points expressed as percentages of the maximum possible score.

5.2 International and European Treaties

5.2.1 What did we look at and why?

It is important to recognise and promote the rights, dignity and autonomy of people living with dementia. These rights are universal, and guaranteed in the European Convention of Human Rights, the Universal Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities.

For this section, Alzheimer Europe used the information publicly available on the following websites: un.org, coe.int, hcch.net to identify whether countries had signed or/and ratified the following European/International Treaties:

  1. United Nations Convention Rights of People with Disabilities (UNCRPD)
  2. Optional Protocol to the Convention on the Rights of Persons with Disabilities
  3. The Hague Convention for the Protection of Vulnerable Adults
  4. Council of Europe Convention on Human Rights and Biomedicine
  5. Additional Protocol to the Convention on Human Rights and Biomedicine concerning Genetic Testing for Health Purposes
  6. Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Biomedical Research

5.2.2 Results

The detailed answers regarding the signing and ratification of treaties can be found in table 10.

With the exception of Jersey, all countries have ratified the UN Convention for the Rights of People with Disabilities, of which, Bulgaria, Czech Republic, Iceland and Romania have signed the Optional Protocol, whilst Ireland, Norway and Poland neither signed nor ratified the Optional Protocol.

Fewer than a third of countries (Austria, Cyprus, Czech Republic, Germany, Finland, France, Latvia, Portugal, Switzerland and the UK – Scotland) have ratified The Hague Convention on the Protection of Vulnerable Adults, whilst a further seven (Belgium [Flanders included], Greece, Ireland, Italy, Luxembourg, Netherlands and Poland), have signed the Convention.

In relation to Council of Europe Conventions and Protocols, over half of the countries have ratified the Council of Europe Convention on Human Rights and Biomedicine, whilst fewer than a quarter have signed or ratified the protocol on genetic testing, with half of countries having signed or ratified the protocol on biomedical research.

Portugal has signed and ratified all of the treaties and protocols covered in this section, the only one of our member countries to have done so. Conversely, Jersey has not signed or ratified any, however, this is explained by its non-state position as a Crown Dependency.

With the exception of Jersey, all countries have ratified the UN Convention for the Rights of People with Disabilities, of which, Bulgaria, Czech Republic, Iceland and Romania have signed the Optional Protocol, whilst Ireland, Norway and Poland neither signed nor ratified the Optional Protocol.

Fewer than a third of countries (Austria, Cyprus, Czech Republic, Germany, Finland, France, Latvia, Portugal, Switzerland and the UK – Scotland) have ratified The Hague Convention on the Protection of Vulnerable Adults, whilst a further seven (Belgium [Flanders included], Greece, Ireland, Italy, Luxembourg, Netherlands and Poland), have signed the Convention.

In relation to Council of Europe Conventions and Protocols, over half of the countries have ratified the Council of Europe Convention on Human Rights and Biomedicine, whilst fewer than a quarter have signed or ratified the protocol on genetic testing, with half of countries having signed or ratified the protocol on biomedical research.

Portugal has signed and ratified all of the treaties and protocols covered in this section, the only one of our member countries to have done so. Conversely, Jersey has not signed or ratified any, however, this is explained by its non-state position as a Crown Dependency.

5.2.3 How did we score countries?

Countries could score a maximum of 12 points. For each of the international treaties/conventions, countries received 2 points if they ratified them and 1 point if they only signed them. Based on the results, it is possible to rank European countries as indicated in figure 14, which shows the points expressed as percentages of the maximum possible score.

5.3 Carer and employment support

5.3.1 What did we look at and why?

People can be diagnosed with dementia during their working years and are able to live well and continue to work, thus it is important for them to also know their rights and for systems to be flexible enough to allow people with dementia to continue in employment for as long as possible. As the condition progresses, people with dementia will generally require increasing levels of care, most of which is provided by informal or family caregivers. The majority of carers do not access formal services and therefore could be missing out on valuable support. It is therefore important for governments to provide adequate support to carers via a carer’s allowance and via flexible mechanisms which allow carers to combine care with work.

Alzheimer Europe asked its member associations to answer the following questions about employment and carer support in their countries:

  1. Are there any provisions in laws/legal framework to protect the rights of people with dementia in employment?
  2. Is there a public mechanism for carers to receive a carer's allowance?
  3. Is there a statutory right for workers to have paid leave when caring for someone with dementia?
  4. Is there a statutory right to flexible working hours when caring for someone with dementia?
  5. Is there a statutory right for workers to have unpaid leave when caring for someone with dementia?

5.3.2 Results

The detailed answers regarding support for employment and carers can be found intable 11.

Although the majority of countries had some form of carer’s allowance, all the other employment rights were only recognised in a minority of European countries. Only Belgium (Flanders and Wallonia) received full marks in this section, as all employment and carers’ rights were recognised in the country.

In a number of mostly Eastern European countries (Bosnia and Herzegovina, Croatia, Cyprus, Greece, Hungary and Poland), none of these rights was recognised.

Figure 15 shows the total number of countries who provide supports for the rights of carers and people with dementia. Consistent with the 2017 Dementia Monitor, a majority of countries offer some form of carer’s allowance. However, fewer than half offer the right to unpaid carer’s leave, with less than a third having legal protections in place in relation to employment rights for people with dementia, paid leave for carers or the right to flexible working hours.

5.3.3 How did we score countries?

Countries could score a maximum of five points and received 1 point for each of the employment-related rights which were guaranteed in the country. Based on the results, it is possible to rank European countries as indicated in figure 16, which shows the points expressed as percentages of the maximum possible score.$

 

 
 

Last Updated: Tuesday 30 March 2021

 

 
 

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