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P30. Legal and ethical issues

Detailed programme and abstracts

P30.1. Tailoring legislation and legal instruments to the needs of people with dementia


VU University Law Faculty, Amsterdam, Netherlands

Countries across western Europe are in a process of developing new legislation and fine tuning legal instruments in order to better meet the needs of older people, especially people with dementia. There are four main avenues of supporting and protecting people with dementia: adult guardianship measures, private mandates, ex lege representation and informal arrangements. A general trend is changing the balance between autonomy and protection into putting more weight on autonomy and less emphasis on protection.

Although countries in western Europe are at different stages in their development, some general features can be observed. The majority of countries has abolished or is moving away from plenary guardianship. The second general feature is that more and more private mandates seem to replace adult guardianship measures: instead of a court appointed legal representative, the person himself appoints someone he trusts to be his representative. The third feature is the trend to replace legal incapacity (you are not allowed to act) by actual incapacity (you are not able to act because you do not understand or oversee the consequences). The last development that can be seen when overlooking the European landscape is that countries are adjusting their legislation and legal instruments to meet the requirements set out by the CRPD (Convention on the Rights of Persons with Disabilities).

In discussing the pros and cons of the four avenues we will deal with questions such as: What kind of supervision is needed in case of a private mandate and is it wise to inform the children? When is it wise to appoint a representative from outside the family, although partner or nearest relatives are ex lege authorized to represent in case of incapacity? When to advise against informal arrangements?

P30.2. Living wills – best practices from Belgium, Germany, the Netherlands, Switzerland and the UK


Vrije Universiteit, Amsterdam, Netherlands

Over time the perception of how the rights and interests of people with dementia should be protected has changed. Under the influence of the (CRPD) Convention on the Rights of Persons with Disabilities, the focus has come to lie on the right of autonomy and self-determination of adults. New instruments have been developed allowing adults a greater role in the protection of their (future) interests. The living will, internationally better known as a continuing power of attorney, is such an instrument. By means of a living will, adults can make their own tailor-made arrangements for the future, entrusting the execution thereof to a self-chosen representative. Notwithstanding the great value of this instrument as an instrument that promotes the autonomy of adults, research shows that problems with regard to the application of the living will can occur in practice. These include the acceptance of the living will by third parties such as hospitals, care homes and banks and the risk of (financial) abuse or mismanagement by the representative in cases where there is limited supervision, or no supervision at all. Countries in Europe are at different stages when it comes the regulation and finetuning of the living will. Some European countries are further advanced than others. A comparative study, funded by a fellowship scholarship granted by Alzheimer Nederland, is currently ongoing, focusing on the legislation and practical application of the living will in five carefully selected countries: Belgium, Germany, the Netherlands, Switzerland and the United Kingdom. In this presentation, an overview will be given of the common problems that occur in these countries and the best practices that have been found as a solution to these problems.

P30.3. Private mandates in case of diminished capacity to act: Right to free movement?


University of Eastern Finland, Joensuu, Finland

The European Union secures free movement to all its citizens including elderly and people with cognitive impairments. Many Northern and Central-European citizens use this possibility and retire in Southern Europe, in Spain and Portugal, for instance. Also, in these cases it is practical to anticipate the possible need for representation in future and draft a continuing power of attorney (CPA) which is also the key way to protect person´s right to self-determination (UNCRPD 12(3)).

There are, however, significant differences in private international law approaches and material laws of different European countries which influence on possibilities to use private mandates in cross-border protection situations.

Thus, multiple different questions can be asked in this regard. Can a person who has drafted a CPA, trust that it is usable also when he or she cross boarders? Does it make sense the draft a CPA for cross-border use? What are the possible problems in this regard? What is the difference between representation in financial matters and personal matters? Do problems in circulation of private mandates create a hindrance to free movement of persons e.g. with cognitive impairments (TEU 21, but also UNCRPD 18)? Would the harmonization of national legislations lead to better outcomes? Is this possible under the current EU competences? In this contribution, these questions are explained and preliminary answers are contemplated in the light of practical comparative law (Finnish/Spanish, Dutch/Portuguese) examples.

P30.4. Having Alzheimer's without symptoms? Conflicting meanings of the disease in research and in the public debate


1Radboud UMC/ErasmusMC, Nijmegen, Netherlands, 2Medical Ethics, ErasmusMC, Rotterdam, Netherlands, 3Neurology, Radboud UMC, Nijmegen, Netherlands

The hope to prevent or delay the onset of dementia by intervening early in its underlying pathophysiological process has led to a proposal for a new research definition of Alzheimer’s disease (AD): as a biological process in the brain, reflected in AD biomarkers, that may or may not lead to dementia. Consequently, research participants with no or only mild cognitive impairment who have positive biomarkers of AD can now be labeled as having ‘preclinical’ or ‘prodromal’ AD. How does this new understanding relate to the meaning of AD in the public debate?

We analyzed framings of AD in the scientific articles that propose this new definition and in Dutch national news paper articles on AD over the last five years. We focused specifically on how the framings of AD steer the reader’s thinking about the disease and how to act on an AD diagnosis. 

Framings of AD in the analyzed scientific literature imply that asymptomatic people with positive AD biomarkers haveAD and will develop dementia unless a pharmaceutical intervention is applied soon. It steers into thinking that these people should be identified ‘before it’s too late’, even though it may take years before they will develop symptoms. In the newspaper articles, on the other hand, AD is used as a synonym for dementia and is portrayed as a process of losing independency and dignity. It is implied that one should set up advanced directives when receiving a diagnosis of AD. Comparing AD framings between both kinds of texts shows how misunderstandings may arise when researchers and the general public interact. For example, when positive AD biomarker results are disclosed to asymptomatic people as evidence for ‘having’ AD, lay people may interpret this as receiving a diagnosis of dementia, while, in fact, they may never even develop it.

P30.5. In search of the promised autonomy – An analysis of the new Portuguese legal framework of persons with diminished capacity through the lenses of article 12 of the UNCPRD


Faculty of Law, University of Coimbra, Coimbra, Portugal

In the last years, Europe has been swept by a wave of legal reforms directed to adjust the legislation of countries that received the UNCRPD in their legal systems, in order to meet the requirements, set out by its rules, namely its pivotal article 12.

Portugal is included in this group of countries. It has approved and ratified the Convention in 2009 without reservations. However, the legal regime of the Civil Code of 1966, that enclosed traditional protection measures, such as full and partial guardianship remained in force for a decade more. The final thrust to erase it was given in 2016 by the report on Portugal of Committee on the Rights of Persons with Disabilities that recommended to repeal these measures. Finally, in August 2018, the reform of the Civil Code has been approved and published. It presents a new system that has claimed to fulfill the demands of the UNCRPD. It has abandoned the dualistic system of legal protection of adults and establishes a single measure of support – ‘acompanhamento’. However, it still allows the declaration of incapacity by the Court and to grant representation powers to the supporter, who is bound to act according to a best interest standard. The UNCRPD plays a central role when interpreting and applying the new solutions. Indeed, it has to be not only the reference that sets the legal standards for the system, but also a beacon in the interpretation of the new regime, so that its actual practical application does not contradict binding international law. In this presentation, I intend to focus on the legal solutions that may put at stake the respect for the autonomy of people with dementia and to propose, within the system, the ways to promote it.

P30.6. Ethical issues in prevention and early intervention for Alzheimer's disease


University of Oxford, Oxford, United Kingdom

Whether one develops Alzheimer’s disease (AD) is determined by interactions between age, environment, consumption, exercise, and treatment choices, and one’s biological and genetic constitution. This final component, one’s constitution, may therefore be viewed as a cause; and control of the causes of disease implies a strategy of primary, rather than secondary, prevention.

The primary / secondary prevention distinction turns on the clarity of the divide between presence of risk factors but absence of disease indicators in the former, and presence of disease indicators in the latter. But what are 'disease indicators'? The distinction between targets of primary and secondary prevention will weaken as understanding becomes more granular of how determinants of AD interact to trigger it. If risk is partly a feature of one’s constitution, then to the extent that one’s constitution is a determinant of possible later symptoms, one’s disease indicators may have been undetected given current scientific understanding, but nevertheless already present. On this view, the primary/ secondary prevention distinction is determined not by presence of disease indicators, but whether we happen to be able to identify them as such. Given the disease process begins long before symptoms emerge, therefore, how can we be sure that what is indicated is merely risk rather than the disease process actually beginning? This is relevant if we hope improved understanding of causes of AD will enable better personalised treatment, given no disease modifying, reversing, or preventing drug yet exists.

In short, if, in presence of risk, early intervention (EI) is better and earliest is best, the benefits of EI can be used to justify radical medicalisation with no obvious lower threshold, i.e. from beginning of life onwards. We examine these ethical issues to think through clinical and policy implications of the increasingly prominent EI approach as it relates to AD.



Last Updated: Wednesday 19 June 2019


  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche