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AE supports the rights and dignity of people with dementia with two new publications launched at the European Parliament

Tuesday 06 December 2016

On 6 December 2016, Alzheimer Europe (AE) presented two important new publications to Members of the European Parliament (MEPs), representatives from the Organisation for Economic Co-operation and Development (OECD) and a number of European organisations including the European Patients’ Forum (EPF), the European Federation of Neurological Associations (EFNA) and GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe), as well as representatives from the pharmaceutical industry and the press, at a lunch debate in the European Parliament.

Newly appointed Chairperson Iva Holmerová introduced AE’s comparative report on decision making and legal capacity in dementia, authored by Project Officer Ana Diaz, with the input of all AE member associations as well as experts from Lithuania and Latvia; and a discussion paper on ethical issues linked to the changing definitions and use of terms related to Alzheimer’s disease (AD), authored by a working group of 11 experts from across Europe, chaired by Director for Projects Dianne Gove.

About the comparative report

Decision making and legal capacity are not new topics for AE, which started looking at these issues almost two decades ago in 1997, with its Lawnet project on legislation relating to the rights of people with dementia from the then 15 Member States of the European Union. The Lawnet project was presented in AE’s 2010 Dementia in Europe Yearbook, while the 2009 report focused on national laws in Europe, with regard to healthcare decision making by people with dementia. The 2016Dementia in Europe Yearbook, “Decision making and legal capacity in dementia” provides an update on information collected in both these earlier reports.

All AE members as well as experts from Lithuania and Latvia were invited to participate, with a total of 31 countries contributing. In addition, some members of the European Working Group of People with Dementia (EWGPWD) participated, providing personal accounts of their experiences related to the main topics discussed.

The first part of the report provides information on how legislation regulates the issue of legal capacity in questions such as: contractual capacity, testamentary capacity, criminal responsibility, civil responsibility/ liability, marriage and political rights (i.e. the right to vote). The second section of the report looks at issues related to consent to treatment and research, and refers to the legal framework in each country and provisions for consent for people lacking the capacity to consent. The final section introduces the topic of systems of substitute decision making and reviews the existing legislation across Europe applying to court-appointed decision makers (i.e. guardians) and powers of attorney.

Some of the new legal approaches move away from public protection as the main priority, towards an approach that safeguards and promotes the rights and dignity of the person, but also highlights the need to balance care and protection, against empowerment and rights. In line with this, and following the requirements of the UN Convention on the Rights of Persons with Disabilities (UN CRPD), some of the most recent legislation has moved away from proxy to supported decision-making approaches.

In publishing this report, AE hopes to support Alzheimer’s associations and other campaigners wishing to promote a human rights-based approach to dementia, as well as policy makers interested in reforming their legal systems to better promote the rights of people living with dementia.

This report is part of AE’s 2016 work plan and has received funding from the European Union.

AE Executive Director Jean Georges said:

“I am delighted to see how many positive legislative changes we have been able to identify. Whilst previously we had quite a number of legal frameworks that described capacity as an “all or nothing” affair, this is very much the exception today.

“Overall, the new mechanisms in place appear to be more flexible and potentially better suited to the evolving needs of people with dementia and their families due to the progressive nature of the disease.

“Everyone should have the right to decide how he/she wants to lead his/her life and a diagnosis of dementia should not change that. Whilst the wellbeing of the person should always be safeguarded, the emphasis should be on empowering rather than on simply protecting the individual.”

For further information about the comparative report please contact Dr Ana Diaz, Project Officer: ana.diaz@alzheimer-europe.org

About the discussion paper

Recent and ongoing developments in the field of research into the causes and development of AD have led to new ways of understanding this condition. Researchers now suggest AD should be considered as a continuum, ranging from an “at risk” state through to a dementia state, emphasising AD as a possible cause rather than a form of dementia.

AE welcomes continued work towards a better understanding of AD, resulting in the possibility of preventive measures, effective treatments and good quality care. At the same time, it recognises the need to try to ensure these definitions have a positive impact on people who already have or may later have AD and ensure they are adequately supported, fully respected and fairly treated.

With this in mind, the Ethics Working Group reflected on a range of ethical issues linked to the new AD model, for the “Discussion paper on ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease”.

The working group was comprised of experts in the fields of ethics, the experience of dementia, ageing, psychiatry, psychology, dementia research and policy. AE would like to thank the members of the group - Dianne Gove (Chair), Jean Georges, Hilary Doxford, Karine Fauria, Julian Hughes, Tina Leonard, Anneli Sarvimäki, Mark Schweda, Sarah Smith, Hinesh Topiwala and Guy Widdershoven - for their valuable contributions.

Some of the stand-out conclusions reached were:

  • New definitions may give rise to a change in societal views on AD and either to a decrease or on the contrary, to an extension of the stigma currently associated with AD dementia.  This requires further investigation and calls for alternative, more positive perspectives and interpretations of AD, for reflection and action by individuals and societies to ensure that people with AD are empowered, valued and have the same opportunities as others.
  • As the new definitions may lead to shifts in research and care, policy makers have an important role to play in helping ensure that the focus on biomedical research into the early stages of AD does not jeopardise social science research aimed at improving the quality of life of people with AD dementia. Policies are needed to promote an equal distribution of research funding and care provision between various socio-economic groups, at national and European level.
  • The previous definition of AD was linked to some degree of uncertainty, but the new definitions also give rise to possible uncertainties and misunderstandings in both the clinical and the research context. The importance of pre-diagnostic counselling and post-diagnostic support must be recognised and every effort made to train researchers and healthcare professionals and to ensure informed consent is a reality for research participants as well as informed decision-making for patients.

AE is confident that recent research, leading to the new terminology surrounding AD, as discussed in this paper, will improve understanding of the stages preceding the development of dementia and hopefully one day provide better treatment to prevent, halt or delay the apparition of symptoms. It hopes to compliment these positive developments with this discussion paper, by helping ensure that the ethical and societal implications of these developments are fully addressed.

AE Chair Iva Holmerová said:

“As Chair of Alzheimer Europe and as a geriatrician and researcher, I think it is important that we reflect on the possible ethical implications of the changing definitions of AD. As a caring, responsible society, it is important that we are all aware of these implications at the level of the individual, communities and wider society. In this way, we can try to ensure that people affected by AD can continue to enjoy the same rights and opportunities as everyone else.”

For further information about the discussion paper please contact Dr Dianne Gove, Director for Projects: dianne.gove@alzheimer-europe.org

You can purchase both publications via the AE website: http://alzheimer-europe.org/Publications/E-Shop

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