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Glossary

2012: The ethical issues linked to restrictions of freedom of people with dementia

Autonomy

Autonomy means having self-determination and exercising choice. This is traditionally associated with having capacity and being able to act rationally but this hyper-cognitive approach has been challenged. It is argued that autonomy can also be expressed by people who lack capacity and cannot explain their actions rationally (see section 1.3.6).

Beneficence

Respecting the principle of beneficence involves doing what is best for someone (e.g. something which promotes their wellbeing). This principle is often considered together with nonmaleficence.

Biomedical principles

The most widely known and used biomedical principles are those formulated by Beauchamp and Childress (2008). These are autonomy, beneficence, nonmaleficence and justice. These principles are used in a number of domains and not solely with regard to medical issues.

Care ethics

Care ethics (or “the ethics of care”) recognises the moral significance of relationships and dependencies in human life. It focuses, not on actions, consent to actions or decisions, but rather on care relationships, which are characterised by reciprocity and based on trust as well as recognition of possible vulnerability.

Carer

The term “carer” is used when referring to informal, non-professional carers of people with dementia. Usually carers are relatives but may also be close friends or other people who take on the informal responsibility for the care of a person with dementia.

Care staff

The term “care staff” refers to professional carers who do not have medical training and skills and who  provide basic nursing care and look after the everyday needs of people with dementia. This does not include the managers of care homes as they are not usually involved in the actual provision of care.

Disability

A disability is a long-term physical, mental, intellectual or sensory impairment which, in interaction with various barriers, may hinder a person’s full and effective participation in society on an equal basis with others (taken from the United Nations Convention on the Rights of Persons with Disabilities, 2006).

Ethical

The term “ethical” is used to denote something that is considered as morally right.

Ethics

Ethics is a branch of philosophy which seeks to address issues related to concepts of right and wrong.

Freedom

Freedom means being free from interference or restriction from other people, organisations or the government. Examples include being free to live in one’s own home, to go to the pub, to vote, to have a relationship and not to be subjected to measures of restraint. Often having freedom equates with having rights which are respected. The terms freedom and liberty tend to be used interchangeably.

General practitioner (GP)

A doctor who practices general medicine as opposed to having specialised in a specific field of medicine. Other terms used include family doctor, family physician or generalist. 

Healthcare professionals

This is a very general term used to refer to a wide range of professionals in the healthcare domain (e.g. specialists, doctors, nurses and auxiliary care staff).

Justice

Justice covers several issues such as a fair distribution of resources, respecting people’s rights, respecting morally acceptable laws, balancing the needs of the individual with those of society and avoiding discrimination, which in turn means ensuring that benefits and burdens within society are equally shared. The term “equity” is often used in relation to the principle of justice.

Nonmaleficence

Respecting the principle of nonmaleficence involves not doing anything to harm somebody and taking measures to help prevent harm.

Personhood

The way that people understand and relate to each other contributes towards the acknowledgement or development and maintenance of personhood. Personhood refers to the status of being a human being with the inherent dignity and value that accompanies that state of being. Some theorists set conditions or boundaries (such as the possession of certain capacities) to determine personhood, whereas others emphasise the role of interaction with others, the uniqueness of each person and the importance of the physical body. Alzheimer Europe emphasises that people with dementia remain persons regardless of the severity or stage of dementia.

Principles

Principles are expressions of agreed values (or “rules of thumb”) which can be used to guide reflection on ethical issues and subsequent behaviour in order to come to an ethically desirable outcome.  They do not provide ready-made answers and cannot be blindly applied as every situation and person is different and there are many factors to consider when trying to behave ethically in a given situation.

Proportionality

This means that the decision or action must be in keeping with the scale of the perceived problem (i.e. not taking a sledge hammer to crack a nut).

Reasonable accommodation

This is a term used in the United Nations Convention on the Rights of Persons with Disabilities which means that necessary and appropriate measures should be taken to ensure that people with disabilities are not discriminated against and can enjoy or exercise the same rights and fundamental freedoms as other members of society (see sub-section of 2.1.1 for more details).

Restraint

Restraint is the term used to describe any method, device, substance or procedure which restricts a person’s freedom of movement in the private or health and social care setting, irrespective of the intent to restrain.

Subsidiarity

Subsidiarity is an organising principle according to which the least restrictive or lowest level of possible measures should be used first.

Wellbeing

Wellbeing is a subjective experience of “being well”. What leads to wellbeing and how it is experienced will differ from one person to the next. Examples include feeling happy, contented, satisfied, safe, cared for, healthy, wealthy and successful. However, none of these examples are necessary criteria.

 

 
 

Last Updated: Tuesday 14 May 2013

 

 
  • Acknowledgements

    The above information was published in the 2012 Report "The ethical issues linked to restrictions of freedowm of people with dementia" as part of Alzheimer Europe's 2011 Work Plan which received funding from the European Union in the framework of the Health Programme. Alzheimer Europe gratefully acknowledges the support it has received frm Fondation Médéric Alzheimer Europe and the Alzheimer Europe Foundation for the development and publication of this report.
  • European Union
  • Fondation Médéric Alzheimer
 
 

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