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P18. Legal and ethical issues

Detailed programme, abstracts and presentations

P18.1. A person with dementia and restriction of freedom

Mäki-Petäjä-Leinonen Anna

Opinions about what constitutes a restriction of liberty depend on definitions. Broad, everyday definitions of the restriction of freedom might emphasise the prevention of a person from doing s/he appears to want to do. There are also legal definitions which may change over time as attitudes towards restrictions of liberty and practices change. Legislative changes often take time and in the period leading up to the change, people may lack adequate protection. For example in Finland Section 6 of the Constitution states that everyone has the right to life and personal liberty, physical integrity and security of person and that no-one should be tortured or otherwise treated in a degrading manner. Furthermore it is stated that there shall be no interference in personal integrity or deprivation liberty without legitimate grounds prescribed by an Act of Parliament.

For this reason in 2010, the Ministry of Social Affairs and Health established a working group whose aim is to assemble the provisions relating to the deprivation of liberty and self-determination of all patients/clients of social and welfare within the same act if possible. The reform of the legislation specially addresses the deprivation of liberty in the care of people with mental disabilities and dementia. It´s goal is also to strengthen the multidisciplinary co-operation and availability and development of services in such a way as to lessen the need to limit liberty and self-determination. The draft of the new legislation will be published before the summer of 2013 and term of office of the working group ends on 31.12.2013. This presentation concentrates the ongoing legislation process in Finland and how the new legislation may affect to the legal position of a person with dementia.

P18.2. Preventing crime and safeguarding people with dementia

Manthorpe Jill, Samsi Kritika

Elder abuse is “a single or repeated act, or lack of appropriate action, occurring in any relationship where there is an expectation of trust, which causes harm or distress to an older person” (definition adopted by World Health Organisation). The Mental Capacity Act 2005 was implemented in England and Wales in 2007. Among other things, it defines and makes punishable (in Section 44) 2 new offences of “ill-treatment” and “wilful neglect” when occurring in a relationship of care with a person lacking mental capacity. There have been a small number of but well-publicised criminal prosecutions under the Act.

Our study was conducted in 2 parts. Part 1 used qualitative interviews with a range of dementia care practitioners to ascertain their level of awareness and understanding of the offences; and the impact (if any) of these on their practice. Part 2 involved a nominal consensus group discussion that aimed at developing an Education Prescription that could enhance awareness and contribute towards training in this area.

Findings from Part 1 indicated that most dementia care practitioners had limited awareness and possessed common-sense rather than specific understanding of the offences. Many practitioners were unclear about thresholds for action and uncertain about the best ways to collect evidence. The nominal consensus group in Part 2 of the study included stakeholders, ranging from lay participants, social worker, General Practitioner, to a Police Officer in charge of safeguarding. The general agreement was the need for an Educational Tool that could highlight the severity of the crimes being committed and that they were punishable by law under the Act. The group felt that clarifying the pathway to alerts was important; and good, strong relationships between safeguarding practitioners and the Police was required for allegations to be taken seriously. The need for the Education Prescription to be context-specific and developed differently for different settings was highlighted. The use of case studies of successful prosecutions was seen as powerful. This presentation will present findings from qualitative interviews in Part 1; examples of case scenarios of prosecutions under Section 44; and the way in which the Education Prescription to prevent crime from taking place in institutional settings is being designed and developed.

P18.3. The therapeutic use of doll therapy for people with dementia: ethical considerations

Mitchell Gary, Templeton Michelle

In light of the increasing population experiencing dementia it is not surprising that researchers and practitioners are increasingly interested in therapeutic ways to improve the quality of lives of people with dementia.  The therapeutic use of doll therapy for people with dementia is one method that has been growing in recent years.  Providing a doll to someone with dementia has been associated with a number of benefits which includes a reduction in episodes of distress, an increase in general well-being, improved dietary intake and higher levels of engagement with other people. 

The theoretical base for how doll therapy can be positive is understood through the work of John Bowlby’s work on ‘attachment theory’ (Bowlby, 1969).  It is important to highlight that this conceptual work was originally focused on child attachment and has limited reference to older people with dementia (Mitchell and O’Donnell, 2013).  With consideration to Tom Kitwood (1997), whose work on person-centered care remains pertinent, Kitwood (1997) warned that behaviour that infantilized was detrimental to people with dementia.  However advocates of doll therapy could point to Kitwood’s (1997) assertion that, ‘if a need is not met, a person [with dementia] is likely to decline and retreat.  When the need is met, a person may be able to expand again’.  There are a number of authors who believe the practice of doll therapy is demeaning to people with dementia (Boas, 1998; Cayton, 2001 and Salari, 2002).

The therapeutic use of dolls is a hugely contentious issue.  It can be argued that it fulfills the concepts of beneficence (as it facilitates the promotion of well-being) and respect for autonomy (as the person with dementia can exercise their right to engage with dolls if they wish).  However it can also be argued that doll therapy is unethical when consideration is given to dignity (in that people with dementia are encouraged to interact with dolls), truthfulness (as the carer/health professional is treating the doll like a real-life baby) and non-maleficence (considering the potential distress this therapy could cause for family members). There is some evidence to suggest that the therapeutic use of doll therapy in dementia care can be of benefit to some people with dementia.  However in the absence of rigorous empirical evidence or legislative guidelines, it is a therapy that must be approached with a degree of caution owing to the potential different interpretations of Kitwood’s ‘malignant social psychology’ and bioethics.

P18.4. Improving advance care planning in patients with dementia in a nursing home: defining facilitating factors and barriers

Wils Maartje, Verbakel Jan, Lisaerde Jo

Background: Advance care planning (ACP) consists of an individual approach to anticipate the decisions on treatment during the course of illness and at the end of life. In residents with dementia in a nursing home there is a pressing need for ACP. Timely discussion of the goals of treatment increases the resident’s autonomy and the quality of life and care.

Objectives: The aim of the study is  to assess the effect of training on the registration of care goals in a nursing home with a population of elderly residents suffering from dementia. Another objective is to explore the views of nursing home staff on ACP  in patients with dementia.

Methods: This quantitative study consisted of a pre- and post  intervention evaluation. The setting was a nursing home in Leuven, Belgium, providing care for residents diagnosed with dementia with a population of 124 residents. The intervention consisted of a 12-month program for nursing staff (n=13) including training in  theoretical and communication skills. This group was asked to complete a structured 10-itemquestionnaire (type Likert) at 0 and 12 months between January 2011 and January 2012 exploring their views on factors that facilitate or obstruct the implementation of ACP.  At the same time a pre- and post measurement of all ACP-related registrations in the electronic medical record took place.

Results: At 12 months we noticed no significant increase in the number of appointed representatives or written wills, specifying the desired care goals. There was however a significant increase in the number of interviews  regarding ACP held with the resident, and also a significant increase in the number of care goals documented. We identified several facilitating factors and barriers for the ACP process. Furthermore we saw significant changes in caregiver’s views on ACP at the end of the intervention period.

Conclusions: Prior to the intervention the members of the nursing staff presented some resistance towards the implementation of ACP, but supported the ACP process afterwards. ACP was said to help raise the dignity and autonomy of the residents, and was especially useful in improving clarity for medical decision making. The number of successfully recorded information on ACP increased significantly. Special attention should be given to the barriers that obstruct the implementation of ACP in the nursing home setting.

P18.5. Moving on from the Home Door – Ethical aspects of using tracking technology

Riikonen Merja, Palomäki Sirkka-Liisa

Background: The basic aim of ethically acceptable technology is to increase the safety of people with dementia, without limiting their actions and right of self-determination. At its best, tracking technology can protect privacy and support human contacts. On the other hand, it can be considered obtrusive and a risk to persons’ autonomy. The aim of this project, ‘Moving on from the Home Door’, was to combine research findings into a service involving individualised exercise programmes and tracking technology to support independent mobility of people with dementia. Decision to use technology was made commonly with persons with dementia and their families. Participants were 30 persons in early stages of dementia, in three intervention groups. The Vega bracelet, a tracking device with an emergency button was used as a technological tool.

Research questions and methods: During the research process, ethnographic observation and interview data were collected on participants’ and their families’ experiences and environment. A number of ethical controversies became evident during data collection and analysis. This paper discusses the following question: What ethical issues and controversies must be addressed when integrating tracking technology into daily lives of people with dementia?

Results: The use of tracking technology affected participants’ autonomy positively by increasing their independent mobility in the close environment. The device helped them to maintain social relationships with neighbours and friends and even resulted in new acquaintances on exercise tracks. Especially persons in a very early stage of dementia, who could keep in mind the reason for using the device without continual guidance, enjoyed an increased feeling of safety. Both the participants and their families found it relieving that there was a way to instantly locate a missing person.

The device was found obtrusive from the perspective of autonomy in situations where participants had to wear the bracelet continuously. The use of the device became a daily object of discussion and arguments between participants and their family members. Problems were especially common for those people with dementia, who were not aware of their illness or who denied their condition or the need for the device. Family members balanced between safety and persons’ right of self-determination. Exaggerated concern for safety limited participants’ opportunities to move around, whereas with help of the device it was possible to increase the designated safe area. Participation of people with dementia was diminished in situations where they felt that the use of the device labelled them as dependent and incapacitated. They experiences uninformed remarks from outsiders as negative, possibly also feeling that their self-concept was threatened. This may be associated with the fact that the stigma of dementia still prevails in society.

Conclusions: We need to take a wider ethical perspective, paying attention to both negative and positive factors in the use of tracking technology. On one hand, a tracking device promoted autonomy, participation and safety of people with dementia. On the other hand, the obtrusive nature of the device was found to restrict their autonomy and participation.

P18.6. After diagnosis support in Portugal – Important issues on advance directives

Zincke dos Reis Maria do Rosário

Alzheimer Europe and its member organisations constantly campaign on the importance of early or timely diagnosis. The expression “timely diagnosis” is preferred as it brings into focus a very important question: “Timely for what?” Most of us will concur that this relates to the time in finding ways of delaying the symptoms, the time to think and prepare for present and future decision taking, the time to seek help and decide on who shall take decisions on behalf of individuals with dementia and the time to let family members know of prior intentions when future decisions concerning health or end-of-life issues arise.

As from August 2012, it became possible in Portugal to make a binding advance directive either in the form of a living will or in a form of a healthcare proxy. These advance directives may include: artificial support for vital functions, futile not-useful treatments, adequate palliative care and permission or refusal to participate in research or clinical trials. Advance directives must be discussed in the framework of the fundamental rights and, as an important tool of preserving self-determination. Health, social and legal professionals must be prepared to inform the public and allow sufficient time to discuss with them the advantages and disadvantages of making advance decisions.

Advance directives give rise to a number of ethical and legal issues of which health care professionals in Portugal are not sufficiently aware of. A significant number are of the opinion that these are not important as doctors rely mostly on the will of the patients and what may be included in a living will does not necessarily contribute to proper palliative care. Thus it is imperative that public discussions on advance directives are promoted in the best possible way. The aim of this presentation is to give a general overview of advance directives in Portugal and will discuss issues relating to the limits, duration, areas of conflict between living wills and healthcare proxy, the importance and significance of recent wills, amongst others.



Last Updated: Monday 04 November 2013


  • Acknowledgements

    The 23rd Alzheimer Europe Conference in St. Julian's, Malta received funding from the European Union, in the framework of the Health Programme. Alzheimer Europe and the Malta Dementia Society gratefully acknowledge the additional support provided by foundations and companies.
  • European Union