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P8. Legal issues

Detailed programme and abstracts

P8. Legal issues (Tuesday 1 Nov., 16.00 - 17.30)

P8.1. Ireland’s assisted decision making (Capacity) Act 2015; an opportunity to support the rights of people living with dementia

BEGLEY Emer

In January 2015 the Irish parliament passed legislation providing a statutory framework for individuals to make legally binding agreements to be assisted and supported in decision-making. This is a reforming piece of legislation, replacing the long-outdated Marriage of Lunatics Act (1811) and Lunacy Regulation (Ireland) Act (1871); replacing also the Ward of Court system, reforming enduring power of attorney and providing formal recognition for advance healthcare directives. The legislation was developed following a process of consultation with civil society organizations, and the Alzheimer Society of Ireland played a key role representing those living with dementia.

This paper will outline the principles underpinning the new legislation, including the removal of ‘best interests’ as determined by others and a new focus on establishing the ‘will and preferences’ of the individual.  It will describe also the structures and new arrangements which will provide assistance to an individual when it is required. Central to this is the establishment of a Decision Support Service and the introduction of new roles - decision-making assistants, co-decision-makers and decision-making representatives.

This paper will examine how the legislation provides legal guidance to support the autonomy and dignity of people living with dementia. Focusing on how the Act supports the rights of people with dementia to make their own decisions.

P8.2. Dementia and treatment decisions: implementing supported decision-making

DE SABBATA Kevin

Dementia is a degenerative disease that causes the progressive impairment of memory and reasoning ability. This condition may last several years and involves both elderly people in need of medical treatments, and younger individuals with other health problems.

People with dementia are often judged incapable of consenting to medical treatment, under current medical law and legal capacity regulations. In fact, they may lack the level of mental abilities necessary to make conscious care decisions and may express unclear or contradictory opinions. In such situations, deciding how to act, in relation to medical treatment, poses particular challenges for carers and medical professionals.

A possible solution comes from Article 12 UN Convention on the Rights of Persons with Disabilities (UNCRPD). This Article indicates supported decision-making as a way of promoting the exercise of legal capacity and decisional power also in the case of people with serious mental impairments. 

In the case of people with dementia, applying this new model poses the challenge of identifying and implementing adequate means of support, helping the person to express his or her will and protecting him or her from possible undue influence.

This paper analyses how the support based approach to legal capacity emerging from Article 12 UNCRPD can be implemented in the context of treatment decisions of people with dementia. Firstly, it analyses the meaning of supported decision-making in the context of Article 12 UNCRPD. Then, it studies what specific means of support need to be implemented in the context of treatment decisions of people with dementia. Finally, it looks at the challenges relating to the practical implementation of supported decision-making in this area. In this context, it mainly focuses on the English legal system, occasionally referring to examples of good practices from other European countries.

P8.3. My power of attorney public awareness campaign: protecting your rights in Scotland

CARSON Jill, LEVIN Katy

Sixteen years have passed since the introduction of legislation (the Adults with Incapacity Act (Scotland) (2000)) supporting the appointment of a welfare power of attorney to safeguard an individual’s rights.  However, public awareness about this important issue is still limited, with a widely-held presumption that ‘next of kin’ can assume a decision-making role.

This presentation provides an update on the Power of Attorney (PoA) Campaign in Scotland.  Originally starting in Glasgow in November 2013, the campaign is now in its third year.  Appointing an attorney has benefits for the individual (decision making rests with someone they appoint and trust), for their family/carer (avoiding the stress of a court process to appoint a guardian) and for health & social care services (enabling timely discharge once an individual no longer requires to be in hospital, thus using resources more efficiently).

The Campaign has been delivered over time through a number of active advertising phases on television, supplemented with social media (facebook and twitter), youtube and public space advertising.

Data from the Office of the Public Guardian which registers powers of attorney in Scotland shows that in the first year of the campaign, there was a 31% increase in the number of people appointing an attorney in areas where the campaign was operating.  Statistical analysis demonstrates that it was significantly more likely that an individual within the campaign area would appoint an attorney compared to those outside the campaign area.  Many individuals with Dementia, or who will develop Dementia in the future, benefit from increased public awareness about PoA.

The success of the campaign evidences that the combined power of TV advertising, website, social media, youtube and public space advertising can bring about behaviour change for a relatively modest cost.  This finding has implications for other public awareness campaigns.

P8.4. Fundamental rights of people with dementia in Portugal: some measures to the protection from violence and abuse

ZINCKE DOS REIS Maria Do Rosário

In Portugal there is no specific legal framework to people with dementia. But, in the framework of the implementation of the United Nations Convention on the Rights of Persons with Disabilities and in line with the Recommendation CM/Rec(2014)2 of the Committee of Ministers to member States on the Promotion of Human Rights of Older Persons, the Portuguese Parliament approved two important Bills: Bill nº 61/XIII to modify the incapacity legal framework (interdiction and incapacitation) and Bill n.º 62/XIII to modify the Portuguese Penal Code in order to include as crimes some behaviors against elderly people´s fundamental rights. These behaviors are: 1) – Making a deed or any other notarial act involving a person visibly impaired in his/her mental condition in terms of not being able to make free and informed decisions, unless legally represented; 2) – Forcing a person to make a proxy for administration or disposal of property, or other assets, purposes, when the person is visibly impaired in his/her mental condition in terms of not being able to make free and informed decisions; 3) – Denying the admission or the remaining of the elderly person in a public or private institution (a nursing home for instance) if she/he refuses to make a proxy for administration or disposal of property, or other assets, purposes or to make a donation to the same institution; 4) –  Abandoning an elderly person at a hospital or at a similar place dedicated to provide healthcare, when the person is in charge of the offender; 5) - ) Prevent or hinder the elderly person access to the purchase of goods or the provision of services of any kind, on grounds of age. The penalty for this behaviors against elderly people fundamental rights is imprisonment of up to 2 years or a fine of up to 240 days.

These particular changes in the Portuguese Penal Code are not only an answer to the upper referred international documents but also a very significant signal that in Portugal elderly people and people with incapacity are neglected and are victims of discrimination and abuses, namely against their property, and not only by family members but also by institutions.

The aim of this presentation is not only to tell about the Portuguese experience on the fundamental rights of the elderly people but also to stimulate the discussion and the reflection on the different ways of discrimination, mistreatment and abuse against especially vulnerable citizens.

P8.5. Using the United Nations convention on the rights of persons with disabilities to improve the well-being and quality of life of people living with dementia

MITTLER Peter

The UN Convention on the Rights of Persons with Disabilities (CRPD) is the first UN Convention to spell out the steps that can be taken to ensure that persons with disabilities attain their basic human rights on an equal basis with others. People with dementia were included in its definition but not its implementation. Organisations of and for people with dementia are now demanding their full inclusion.

The Convention’s underlying principle of Nothing About Us Without Us is reflected in the membership of the UN CRPD Committee responsible for monitoring its implementation, all but one of whom are themselves persons with a disability.  It does so by confronting discriminatory laws, policies and practices; tackling the stigma and stereotypes around disability; reducing physical, societal and attitudinal obstacles to participation in their community and providing practical and financial supports.  The Convention can be used as a tool to ensure that persons with dementia have a key role in the development of policy and above all its implementation in practice to achieve practical outcomes in access to high quality services and supports in dementia-accessible and enabling communities. 

A major priority is to ensure that the regional and national dementia strategies now being developed are underpinned by CRPD Principles and Articles. Although the EU and most its Member States are legally committed to the Convention by ratification, its 2016-2018 Dementia Strategy is not based on its General Principles and Articles. How else can Europeans respond to the OECD report that dementia receives the worst quality of care in the developed world? 

http://ec.europa.eu/health/major_chronic_diseases/diseases/dementia/index_en.htm

P8.6. Vision Zero – for a dementia care without restraint. Successful implementation with ambassadors

HOFFMAN Wilhelmina, NORDBERG Gunilla

The question of how we can protect people with cognitive impairment without the use of restraint has long been discussed in Sweden, it has been the subject of several reports since the 1980s.

The Swedish Dementia Centre (SDC) has been involved in this discussion since 2009 and two reports have been published, one in 2010; for whose sake? Regarding restrain and protection in dementia care, and in 2013; what can Sweden learn? The use of protective restraint in Norway, England and Holland.

The educational package Vision Zero is the result of an assignment from the government. The aim of the assignment has been to minimize the use of restraints for people with impaired decision making ability. The Vision Zero educational package consist of an online training course, a family booklet, mobile apps and a handbook.

SDC now works with the implementation of the Vision Zero all over the country. A successful way of doing this has been to educate Vision Zero Ambassadors. The aim is to give the Ambassadors tools that will help them to spread their knowledge and educate their co-workers about a dementia care without restraint. The education for the Ambassadors consists of a training day with lectures, case studies and discussions. The Ambassadors also receive a kit with tools for them to use when educating their co-workers.

SDC hope that this educational package and this way of implementation will be a source of inspiration for other countries.

SDC, established 2008, is a non-profit foundation and the Swedish national centre for excellence in dementia care. SDC actively promotes future development in care of persons with dementia – towards a more dementia friendly society.

 

 
 

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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