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PL1. A right based approach to dementia

Detailed programme and abstracts

PL1. A right based approach to dementia (Tuesday 1 Nov., 8.30 - 10.00)

PL1.1. Putting people with dementia first: promoting a rights-based approach in national dementia strategies

LEONARD Tina

Set in the context of a growing movement around human rights and dementia, this presentation will provide an overview of what a human rights based approach to dementia strategies looks like in policy and practice.

Many countries have now developed action plans and strategies to support investment in infrastructure, administrative systems and services for people with dementia.

Applying a number of fundamental human rights principles and taking the case of Ireland’s first National Dementia Strategy, this overview will highlight how strategic national policy and practice can enhance the lives of those living with dementia and play a leading role in realising their human rights.

PL1.2. Balancing perspectives of persons with dementia and caregivers

SWANE Christine

To some extent, during the recent decade persons with a dementia disease have been offered a voice in many aspects and contexts. They are apt to be involved in the documentation of daily life with dementia, they are being heard when evaluating quality of care – which used to be mainly based on ‘proxies’ (family and professional caregivers), in defining research topics and in developing dementia policies worldwide.

Getting a dementia diagnosis is the moment you will immediately be joining the category of ‘people with dementia’, whether you want it or not. As a spouse or child, you will automatically enter the group of ‘caregivers to a person with dementia’, with the different connotations that are related to this position; such as losing your loved one before he or she actually dies – or ‘becoming the mother of your mother’. The persons involved are placed into new categories about which the surroundings often have negative and fearful preconceived notions.

In Denmark, even in 2016, notions such as ‘the demented’ is still frequently used in both professional and everyday language. The fearful image of dementia still prevails in information on dementia, e.g. ‘The dark disease’, ‘The dementia epidemic’. We use diagnoses and language to describe dementia, and there is no way out of the paradox of labelling. While highlighting the situation of people with dementia and caregivers in order to make their needs visible and enhance the quality of support and care, we also make categorical distinctions between persons with dementia and their surroundings. Hence, we risk missing the opportunity to emphasise the social and human similarities between people with and without dementia that may create a better balance, where persons with dementia might not always be constructed as ‘a problem’ that caregivers have to deal with.

PL1.3. Legal capacity and proxy-decision making: an overview of Council of Europe activities

WARD Adrian

In the introduction to his 2012 issue paper “Who gets to decide?”, the Council of Europe Commissioner for Human Rights wrote the following “The right of persons with disabilities to make choices about their lives and enjoy legal capacity on an equal basis with others is one of the most significant human rights issues in Europe today. Being recognised as someone who can make decisions is instrumental in taking control over one’s life and participating in society with others."

Council of Europe Ministerial Recommendation (2009)11, on principles concerning powers of attorney and advance directives for incapacity, stresses that primacy should be given to such autonomous measures over other measures which are typically put in place by courts or other agencies.  Recognising the importance of this recommendation, the Council selected it for a review of implementation, and appointed Mr Ward as consultant to conduct the review.  His remit includes liaison with other international bodies.  In particular, he has been actively engaged with the UN Committee on the Rights if Persons with Disabilities, and - in view of the significant impediments experienced by people with intellectual disabilities in cross-border situations - the. Permanent Bureau of The Hague Conference on Private International Law.

An expert and author published in many countries and languages, as representative of the Council on this occasion Mr Ward will also give an overview of other relevant Council activities.

PL1.4. Ethical challenges in contemporary Alzheimer’s disease clinical trials and research

MILNE Richard

Research in Alzheimer’s disease increasingly focusses on what some see as earlier stages of the disease process, in which changes associated with Alzheimer’s disease pathology can be observed.  Clinical trials are focussing increasingly on these stages of the disease, with the aim of preventing or delaying the onset of dementia. This paper investigates the distinct ethical and social challenges raised by these developments, drawing on work with the European Prevention of Alzheimer’s Dementia (EPAD) project. It highlights how the move to ‘go early’ reframes traditional questions associated with the ethics of Alzheimer’s research and clinical trials and introduces new discussions which require attention; notably the development of robust processes for the communication of Alzheimer’s disease risk status within clinical trial recruitment. The paper reviews discussions around disclosure and presents the approach being adopted within EPAD. Reflecting on the difficulties associated with communicating risk status, the paper highlights the disconnect between biomedical and public discourse around Alzheimer’s disease and dementia. It points to the need for broader societal dialogue around the changing understanding of disease and the focus and goals of research.  These represent important future steps in ensuring both that research is able to translate into clinical practice, and that the focus of research reflects social needs and values.

 

 
 

Last Updated: Tuesday 10 January 2017

 

 
  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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