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Parallel Session: Ethical and legal issues

Abstracts and presentations

The Legal Rights of people with dementia in health and social care

James Pearson, Alzheimer Scotland, United Kingdom,

This session looks at the rights of people with dementia in hospital and care home settings in Scotland. In recent years the rights and legal protection of people with dementia have been improved by developments in legislation. The introduction of the Disability Discrimination Act 1995 and the Human Rights Act 1998 by the UK Parliament are of major importance. The Scottish Parliament has further strengthened the rights of people with dementia with the introduction of the Adults with Incapacity (Scotland) Act 2000, which makes provision for proxy decision making on behalf of an adult with incapacity. The act is enshrined by a set of principles which ensure that the adult has the right to have his or her past and present wishes taken into account together with the views of the nearest relative and primary carer. The Regulation of Care (Scotland) Act 2002 introduced a national Care Commission, the Scottish Social Services Council and National Care StandardS These measures are all intended have regard to an individual’s human and civil rights and improve the quality of care provided, in any care setting, to people who have an illness or disability, including people with dementia, The Community Care and Health (Scotland) Act 2002 makes provision for free personal care for people aged 65 or over who are assessed as needing personal care, the Act also introduced the rights of individuals to be involved in their own care assessments and the right to direct payments so that they can arrange their own care serviceS The Mental Health (Care and Treatment)(Scotland) Act 2003 reforms mental health law in Scotland making provision, in certain circumstances, for detention and compulsory treatment in hospital or the community. The Act is again enshrined by fundamental principles and establishes an individual’s rights to appeal, to receive independent advocacy, to have a named person act on his or her behalf and to make an advanced statement to ensure that his or her past and present wishes are taken into account. Part 1 of The Adult Support and Protection (Scotland) Act 2007 came into affect in October 2008 and introduces measures to protect vulnerable adults from harm. This act is also enshrined in principles to ensure the adult’s views are taken into account and is designed to improve protection to adults who are known to be at risk of harm. The Act creates new powers and responsibilities for Local Authorities to investigate and intervene to prevent harm. The act makes provision for adult protection committees to be set up throughout Scotland and also requires a range of public bodies to cooperate in investigations to and share information to promote adult protection. This session examines how the various legislative provisions promote the rights of people with dementia to be treated with dignity and respect in health and social care settingS The session also considers the importance of health and social care staff understanding the statutory rights of people with dementia and the importance of information regarding their statutory rights so that people with dementia and their representatives feel empowered to assert their rightS

Dementia: autonomy and decision making – principles into practice

Jan Killeen, Alzheimer Scotland, United Kingdom,

This presentation addresses the issue of how legally appointed guardians can be effectively supported to understand and respect the rights of adults with mental incapacity. It will draw on the experience of the Incapacity (Scotland) Act, introduced in 2000, where the largest group to benefit from the reforms are older people with dementia and their families. The law provides a set of fundamental principles which legally appointed guardians and attorneys are required to apply to their actions and decisions on behalf of the adult. The principles aim to both protect and empower the adult. It is notable that other European countries, Canada, Australia and the US have incapacity legislation which is underpinned by an almost identical set of principles, despite differences as to who may be legally appointed as guardian. However, safeguards to ensure principles are observed, including provision for training and supervision, would appear to vary considerably from country to country. The role of guardian is complex and, over time, guardians are often faced with conflicts of interest. How are their ongoing needs for support being met? This presentation aims to contribute to the work of a project for which funding is currently being sort, the aim of which is to develop resources to support lay proxies, identify and disseminate best practice to ensure that the rights of older people on guardianship or with an attorney are observed.

Welfare Guardianship and Hospital Discharge in Scotland

David J Findlay, NHS Tayside, United Kingdom,

The Adults with Incapacity (Scotland) Act 2000 was the first major piece of legislation of the new Scottish Parliament and followed years of lobbying on behalf of people with dementia, among other groups. It is based on explicitly stated principles and a detailed definition of incapacity.

One unexpected consequence of this new legislation, during its stepwise implementation and in response to a range of legal opinions, was that some local authorities began seeking regular use of Welfare Guardianship powers when general hospital inpatients with dementia, assessed as unable to return home, required placed in care homes. This happened in situations where meaningful consent was lacking even when neither the individual nor the family objected to the proposed course of action, resulting in considerable delay, expense and lost bed days. Already limited Old Age Psychiatry resources for liaison with general hospital colleagues were increasingly diverted by requests for “capacity assessments” rather than to help with management in what is often a difficult environment for people with dementia. A perceived need to avoid risk, even when the individual had regained meaningful autonomy in conjunction with a better level of functioning than before hospital admission, gave the issue many of the characteristics of an ethical dilemma and accentuated the need for training in dementia-related skills for general hospital multidisciplinary teamS

A partial solution was eventually found with the issuing of central guidance relating to the Social Work (Scotland) Act 1960 and it is to be hoped that the much greater numbers potentially encompassed by the Mental Capacity Act 2005 for England and Wales do not encounter similar difficulties. The common clinical scenario of a patient who is desperate to return home but whose dementia results in an only partial grasp of potential problems and a reluctance to accept planned assistance remains as a substantial enough challenge to skills of both sensitive facilitation of capacity and of discharge planning without these being diverted unnecessarily.

Disabling or Enabling Technology? Ethical and Practical Concerns of Assistive and Surveillance Technologies in Formal Dementia Care

Alistair R. Niemeijer, VU University Medical Centre, Netherlands,
Co-authors: Cees M.PM. Hertogh, Brenda J.M. Frederiks, Johan Legemaate, Jan A. Eefsting

In recent years there has been an increase in interest and focus on assistive and surveillance technologies designed for dementia home care that have been hailed by some, including the Alzheimer’s Society, as a solution that could increase patients' safety and independence and relieve caregiver burden- ultimately reducing avoidable entry into residential care. However, the question arises to what extent these technologies are (considered) being used in a formal care setting and how ethically and practically acceptable this use would be. What is more, it is still unclear how effective these technologies are in formal dementia care.

Methods: A systematic literature review was conducted to explore what is known on the effectiveness and acceptability of assistive and surveillance technologies in formal dementia care and to set forth the state of the ethical debate. The review is part of a larger research project, intended to develop a multidisciplinary guideline for the responsible application of assistive and surveillance technologies as an alternative to ‘hard’ freedom restrictions in the care for elderly with dementia and intellectual disabilities.

Results: Preliminary results show that use of assistive and surveillance technologies in formal dementia care generates considerable ethical debate. However, most discussion articles tend to give a broad overview rather than an in depth discussion. Furthermore, there seem to be notable differences, both intercontinental between the British literature and American literature and intra-European between England and The Netherlands. In England the focus generally tends to be on (ethical) implications for the person with dementia in relation to the technology, whereas the Dutch starting point appears more paternalistic. In America there is more emphasis on costeffectiveness of the technology and litigation issues. Overall however, there is little attention for the client perspective. Conclusion: The use of assistive and surveillance technologies in dementia homecare might have distinct benefits, but its use and implications for formal care are less clear. Little can be said about the effectiveness of these technologies on the basis of all literature covered. More research is thus recommended to determine both the effectiveness and the ethical and practical acceptability of these interventions.

Patient violent behaviour as an ethical problem

Hannele Maarit Laaksonen, University of Applied Sciences Vaasa, Finland,

Background and purpose: Among mental care violent behaviour exists between patients and nurses in an increasing rate. However, violent behaviour between patients at psychiatric dementia care units is not examined. The purpose of this paper is to describe that ethical problem and open up the phenomenon. The main research question is: what kind of violent behaviour among patients and nurses has been reported during years 2005-2007 at one psychiatric dementia care unit in Finland. Methods: Reported documents (N=145) has been analysed using quantitative method.

Findings: The target of violent behaviour was patients in 66% (n=94) of cases during years 2005- 2007. Most common places, where violent behaviour has been reported in this case, were corridors, own rooms, the dining room and the lounge. There were more violent episodes in the evenings between 6 and 8 pm. The common situations where violent behaviour was reported were the following: fights about ones´ own place at dining room (11%), fights about rooms (16%), unspecified fights between patients (16%), hitting another patient as they walked by (19%), other patients´ provocative behavior (16%), and other unspecified situation (17%). Consequences of violent behaviour were scratches, bruises, swellings, bleeding and red skin. Violent situations were managed often by discussions, another nurse coming to help, or on their own. Conclusion: Patients at dementia care units have the right to feel safe and secure. Every psychiatric dementia care unit has to develop physical conditions as well as a sufficient number of staff and staff education to prevent violent behaviour and manage those situations.

Sexual questions for people with dementia

Michael Schmieder, Stiftung Sonnweid, Switzerland,

Nowadays, people with dementia who live in care units grew up during the so-called “sexual revolution” and were socialised in this period. The desire for sexual contacts between nursing home residents is a huge challenge for the whole staff of a care unit and also a provocation for the other inhabitants because the contacts are often not in private rooms but in the public areas. Topics such as autonomy and mutual respect are as important as for example the promise of marriage and binding relationships. Our care unit – Sonnweid – specialised in the care of people with dementia, has until now had little experience of those questions. Our nursing staff is entitled to know precise ways to handle the topic of sexuality in our care unit e.g. a childless married woman, who wanted to have sexual contact with a man, whom she considered her husband. She claimed to have a baby with him. All these topics also expose nursing staff to ethical conflicts. Different questions may arise such as:

  • How to proceed when the husband is still alive and visits his wife regularly?
  • Is he entitled to knowledge about the adultery?
  • Do we have to offer a separate room for intimate contact?

With regard to questions about sexuality we have guidance on how to proceed in those cases. This guidance also gives the opportunity to develop solutions which are appropriate and reflect the importance of looking for best practices to handle such difficult problems. Therefore, the nursing staff faced with these problems, each has his/her own belief, and is directly involved in coming to a decision. The most important thing is not to declare these topics off-limit.



Last Updated: Wednesday 21 October 2009