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P7: Legal issues

Detailed programme, abstracts and presentations

P7: Legal issues

P7.1. Decision-making in dementia care: autonomy, capacity, and the legal doctrine of “informed consent”


While the principle of ‘patient autonomy’ in healthcare decision-making, expressed through the legal doctrine of ‘informed consent’, represents an advance in terms of patient rights for ‘capable’ adults, it has no application for so-called ‘incapable’ adults -such as those with more advanced dementia. In practice, once deemed ‘incapable’ of making a decision the family or carers of a person will often give consent. There is however, no legal protection for the giving of consent in this way, and there is no provision for ensuring that the wishes and preferences of the person are factored in to any decision to be made.

The law relating to capacity is currently being reformed in Ireland, along with many European jurisdictions, with the aim of supporting and assisting ‘vulnerable’ adults, including those with dementia, to make decisions for themselves, but it remains premised on a narrow capacitated/ incapacitated divide, with those passing a functional capacity test being permitted to make their own decisions and those who do not, not.

Recent jurisprudence from the European Court of Human Rights, suggests that it has become necessary for the law to lookbeyondcapacity, and to address in terms of human rights, issues of voluntariness and understanding. InShtukaturov v Russiathe Court found that while the applicant lacked ‘de jure legal capacity to decide for himself’ that this did not necessarily mean that he was ‘de facto unable to understand his situation’. What this means then, is that while a person with dementia  may not be in a position to give a legally binding consent, that this does not mean that their rights to be involved in the decision-making process do not need to be protected. The singular challenge then is how the current ‘informed consent’ process might be enhanced or adapted to incorporate these essential rights.

P7.2. Promotion of legal rights of people with dementia in Portugal

ZINCKE DOS REIS Maria Do Rosário

The United Nations Convention on the Rights of Persons with Disabilities was ratified by Portugal in 2009 and subsequently included in its national law.

The purpose of this Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

It states that “persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”. 

Furthermore, it stipulates that “States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests”.

In Portugal, an individual who lacks mental capacity may be declared either subject to interdiction or incapacitation according to the degree of incompetence. If interdiction is granted, the subject will be considered as incompetent to make any personal, health, property or financial decision.

The legal process is very slow and expensive and there is significant lack of awareness on the importance of appointing a guardian that will have the duty to promoting the rights of the person with incapacity. Moreover, there are no professional guardians and no possibility of choosing a guardian in advance when the person is still capable. As a result, there is a considerable number of people with incapacity but no guardian, currently being cared by their families that may act in good faith but with no legitimacy to act on their behalf. To compound this problem, there is a growing number of people with mental incapacity who are living on their own in poor conditions (lack of food, hygiene, home) because there is no one to be appointed for their protection or to act on their behalf.

It is only lately that Portugal initiated proceedings to  answer  Article 33 of the Convention through the launch of a committee to which  representatives from several patient organizations will form part. It is hoped that this is a right step forward towards a new legal framework that really promotes and respects the rights of people with dementia and other forms of disability or incapacity.

P7.3. Self-determination or protection - pitfalls of the guardianship system


As a part of a project of Society for Memory Disorders Expertise in Finland 94 professionals were interviewed in 24 group interviews. The participants were from different social and health care units, legal aid offices, banks, local register offices and from the third sector. The primary aim of the interviews was to map out the problems and challenges in the field of legal rights of people with memory illness. One topic was the challenges in the public guardianship services.

The fundamental question in the interviews was how to find an appropriate balance between self-determination and protection of the person with memory illness. Based on that question, the participants reported many different pitfalls in the public guardianship system. The first problem pointed out was that most of the people recently diagnosed with memory illness do not consider later life planning relevant at the moment, which usually leads to a situation in which their legal capacity has already weakened to the point where planning is no longer possible. Means of later life legal planning, such as advanced directives or continuing powers of attorney, are still unfamiliar.

Secondly the participants reported how applying for guardian doesn’t target the right way. There are still misunderstanding that every person with dementia needs a guardian. It is not made clear that only when a need for proxy decision making emerges, and no milder option or measure is enough to secure the person’s rights, applying for guardian becomes current. On the other hand, people may delay applying and questionable legal acts are possibly made in the meantime.

A third obvious pitfall referred to the application process. It is not clear for people with memory illness, or their carers or even for social and health care professionals, how the application process starts. Other pitfalls were related to incorrect assumptions of the guardian’s tasks and to the lack of cooperation between different entities and units.

P7.4. Protecting people who cannot consent to their admission in a nursing home. Recent evolutions in the French law

COQUELET Alice, GZIL Fabrice

Legal provisions relating to the attendance in nursing homes, and to restrictions of freedom of movement are crucial issues for the respect of the rights of people with dementia (PwD). As shown by the comparative study of European legislations conducted by Alzheimer Europe in 2011, the way to deal with these issues differs considerably between countries. In addition, existing provisions are sometimes considered unsatisfactory and reforms are being discussed, e.g. in France and in the UK.

In this presentation, we will consider the recent evolutions of legal provisions relating to involuntary attendance and to the use of coercive measures in French nursing homes. After a brief history, we will study and discuss the provisions debated in French Parliament, in light of the amendments proposed by Fondation Médéric Alzheimer.

The legal provisions that should frame the attendance of PwD and the use of restrictive measures in nursing homes have been a matter of debate in France for more than 10 years. The model of involuntary commitment in psychiatric wards was considered, but excluded. Finally, legal provisions should come into force in 2016. This is an important move, as measures affecting the fundamental right of freedom of movement are not uncommon in practice, and occurred in a kind of legal vacuum.

However, French law makes it very difficult to consider the situation of people legally capable, but unable to understand the issues and outcomes of a decision. This leaves people who are unable to give informed consent to their admission in a nursing home, or to measures restricting their freedom, without adequate protection of their basic rights.

If the choices made by the French Parliament provide at last a legal framework, they will not provide all the safeguards necessary to guarantee the fundamental rights of PwD to be recognized and protected.

P7.5. Legal & ethical issues around freedom to roam for people with dementia

GRAY Patrick, PASCOE Ann, SHEFFIELD Ian, WATT Catriona

To show how the debate around ‘tagging’ people with dementia to ‘allow’ them to be ‘safe to wander’ has raised the importance of legal and ethical issues and how people with dementia do not want to feel ‘tagged, but rather want ‘freedom to roam’.

How risk aversion is a contributing factor to people with dementia not being able to roam as they wish and how a key issue that Dementia Friendly Communities CIC grappled with was, who has the legal and ethical right to decide when a person with dementia may wear a GPS tracker.

How, despite the fact that laws on incapacity may differ between various countries, the fundamental principles of the European Convention on Human Rights (ECHR) remain the same which means the legal and ethical issues around freedom to roam safely rest only on human rights’ points of view.  How this has informed the Scottish Mental Welfare Commission.

How using a GPS tracker should be used when the person with dementia is at real risk of being lost or is at risk of harm and in danger, and NOT simply to check up on them, that anything done should be in the best interests of the person with dementia and be the least restrictive of their rights and freedoms.

How any person with dementia should be entitled to live their life freely and how this can be done by balancing their wish to go where they choose and associate with whom they choose with the risk of harm – including the many risks arising from becoming lost – from doing so.



Last Updated: Monday 28 September 2015


  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene