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Restriction of the freedom to choose one’s residence or place of stay

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

In this section, we address the ethical issues linked to restricting a person’s freedom by obliging them to live or stay in a particular place or area either temporarily or permanently. This would include:

  • involuntary detention in an institution, hospital or nursing home, either by means of a legal process or by more subtle means such as based on the person’s failure to object.
  • placement in an institution, hospital or nursing home, or attendance at a day care centre based on failure to protest.
  • confinement to a particular area within a building or larger area

The main ethical issues of relevance to these types of restriction of freedom are autonomy, nonmaleficence, justice (equity and non-discrimination), dignity and the fundamental human right to freedom. Often, restriction is achieved by means of various measures of restraint or coercion. These will be discussed in chapter 2.2.

1.1.1       Involuntary detention

Examining the grounds for involuntary detention 

The legal justification for restricting the freedom or choice of residence of people with mental disorders is often based on the alleged danger they pose to themselves or others combined with proof that they have a mental disorder.  Having a disability or mental disorder is not sufficient in itself to warrant involuntary detention. There must be a recognised danger in addition to the mental disorder. Article 14 of the UNCRPD states “the existence of a disability shall in no case justify a deprivation of liberty.” This can be seen in numerous laws on involuntary detention. In the Belgian Law of 26 June 1990 on the Personal Protection of Mentally Disordered Persons, for example, it is stated:

"Failing any other suitable treatment, confinement measures may be taken in respect of a person with a mental disorder only if his or her condition so requires, either because he or she seriously endangers his or her own health and safety, or because he or she constitutes a serious threat to the life or integrity of others. Lack of adaptation to moral, social, religious or political or other values cannot of itself be considered as a mental disorder." (Chapter 1, article 2)

Legislation establishes the grounds for the legitimate deprivation of a person’s freedom by proving a legal framework which defines the conditions to respect and the procedure to follow. This is sometimes stated in a country’s Constitution. This is the case in Finland where under section 7 of the Constitution, it is stated that there shall be no interference in personal integrity or deprivation of liberty without legitimate grounds prescribed by an Act of Parliament. The European Convention on Human Rights (ECHR), describes everyone as having the right to liberty and security of person, and not being deprived of their liberty (article 5). However, paragraph 1(e) of the same article states that it is lawful to detain people from certain groups, one of which is “persons of unsound mind”. In some countries, laws on involuntary detention also specify that the restriction of freedom must be in a particular place (e.g. in a hospital, a psychogeriatric ward or a psychiatric institution), which may differ from one country to the next and that it must be for the purpose of treatment. “Unsound mind” is not defined in the document. However, according to the European Agency for Fundamental Rights (FRA, 2011), in case law amounting to several hundred cases from the European Courts of Human Rights (ECtHR),  numerous terms are used based on changing perceptions of mental illness and of progress in psychiatry. In national legislation, a whole range of terms is used for the now outdated term “unsound mind”. Specific reference is rarely made to dementia.  

Having dementia and being perceived as a threat to oneself or others can therefore be sufficient criteria for the legal deprivation of freedom. In ethical terms, such deprivation of freedom affects a person’s self-determination based on the principles of beneficence and non-maleficence. In other words, a person is deprived of the right to make a decision in relation to their own life on the basis of the moral duty to promote their wellbeing and protect them from harm. It could be argued that people have the right to make unwise decisions even those which might endanger their own lives. Millions of people, who apparently have the necessary and relevant capacity, make unwise decisions and engage in risky behaviour every day. The standard liberal principle of letting people do what they want to do provided that it does not unfairly threaten the interests of others does not seem to extend to people with cognitive impairments (Wikler, 2010). People who do not lack capacity are therefore generally free to make unwise decisions and engage in risky behaviour whereas some others, including people with dementia, are not. The reason for this is perhaps because the former presumably understand what is at stake, can weigh up the pros and cons and take responsibility for the results, even those which turn out to be disastrous to their own wellbeing, health and even safety. In the case of dementia, depending on the individual, the stage of dementia and a range of associated factors, they may not be capable of such decision-making processes. In such cases, the right to make unwise decisions or behave in a way likely to threaten their own safety and wellbeing is no longer readily accepted. Depending on the circumstances, this may lead to a more protective approach. This could include the temporary or permanent restriction of their freedom to live in the place of their choice. The justification for the measure is therefore based on beneficence and nonmaleficence based on a perceived need to decide what is in the person’s best interests and to prevent them from coming to any harm. The issue of the right to take risks is discussed in more detail in section 2.2.

As the grounds for the restriction of liberty by means of involuntary detention include the person having a mental disorder and being in need of treatment or care, it is important to ensure that this is correctly assessed. A UK survey to ascertain if there is any consensus amongst psychiatrists, found that experts could not agree on what kinds of cases require the legal process for involuntary detention to be invoked.  The study looked at 12 complex cases of people with dementia and acquired brain injury to judge what legal process had been followed and what legal processes experts thought should have been followed. As a result the researchers recommended that safeguards be re-written in legislation.  It was concluded that if experts do not agree then we cannot have confidence in the legislation and its guidelines (Killeen, 2012).

With regard to restrictions of freedom based on the perceived risk of the person with dementia causing significant harm to others, there is also a difference in approach in that people with dementia may be involuntarily interned in the absence of any criminal offence. People who do not have dementia would not have their freedom restricted unless they had committed a crime even though there are occasionally discussions about whether psychopaths and paedophiles should be involuntarily interned as a preventive measure (Ford, 1999 cited in Gostin, 2000). People with dementia, on the other hand, may have their freedom restricted based on the harm which they might possibly cause to others but have not yet caused and which may never occur. The restriction would therefore be a preventive measure and not a punitive measure.  

The procedure for involuntary detention

In most countries there is a legal procedure to determine the conditions for involuntary detention during which people can defend themselves and appeal against the decision. However, it is presumably more difficult to defend oneself against an allegation that one might do something at some point in the future than against an allegation that one has already done something. The person whose freedom may be restricted has to defend themselves against other people’s beliefs and presumptions as well as probability, perhaps but not necessarily accompanied by supporting evidence. Nevertheless, representing a danger to oneself or others and actually harming others are both legally accepted as justification for the possible deprivation of freedom.

The involuntary detention of a person with dementia who is a danger to him/herself or others and in need of care or treatment is, in ideal circumstances, based on medical reports from relevant experts such as psychiatrists. However, the initial measure to request involuntary detention may be dependent on health and social care professionals’ ability to assess the capacity of a person with dementia in relation to a specific potentially dangerous situation. They may lack confidence in their ability to assess capacity and there may also be an absence of clear guidelines. This may result in them failing to make such assessments and in delays in dealing with the issue until the person’s condition becomes severe or until a crisis occurs. In this way, the freedom of the person with dementia may be restricted far more than would have been the case, had measures been taken earlier to assess the person’s capacity within the context of a specific situation (Killeen, 2012).

People with dementia may be at a disadvantage when it comes to defending themselves because of the ignorance, misinformation and stereotypes surrounding dementia. Judges and experts may be neutral and truly concerned to decide what is in the person’s best interests. They may even recommend not to restrict the freedom of the person with dementia and argue in favour of their right to autonomy and independent living. However, there is an imbalance of power between people with dementia and judges and mental health experts. The latter are considered qualified to make judgements about the capacity and best interests of people with dementia. The credibility and reliability of what people with dementia say in their defence is likely to be affected by those judgements. This constitutes an imbalance of power which may make it hard for people with dementia to defend themselves. It could be argued that medical experts do have the necessary expertise and can be trusted. Research suggests that this might not be the case. In the study mentioned earlier (reported by Killeen, 2012), psychiatrists could not reach consensus on the need for detention. This is worrying and suggests that people with dementia, might be having their freedom restricted lawfully but not justifiably. This means that they are being discriminated against on the basis of their condition in not being treated equitably. Other groups who experience a loss of their freedom presumably have a fair trial in which the justification for the deprivation of freedom is well established.

Is the restriction of freedom the right response to perceived threat?

In several countries, the justification for involuntary detention is that the person with a mental disorder who threatens their own safety or that of others is in need of treatment. Often the place in which the person can be involuntarily interned is a psychiatric institution or a psychiatric department within a hospital where the person can receive appropriate treatment for their mental disorder to render them safer.

The involuntary detention (e.g. in a hospital, psychogeriatric ward or psychiatric institution) of people with dementia in order to administer symptomatic treatment would, in many cases, be a disproportionate and even inappropriate response. Several studies have highlighted the inappropriate use of anti-psychotic, neuroleptic drugs to manage BPSD. This is addressed in more detail in the section on chemical restraint. However, the danger in the case of dementia is not always linked to such symptoms. It may be linked to other factors such as memory loss or confusion for which symptomatic treatment can also be provided within the community.  A psychiatric hospital or even hospital ward would be unlikely to provide a suitable environment and skilled staff to ensure the wellbeing of people with dementia and could lead to further distress. Although people with dementia do sometimes pose a risk to themselves and others, it is unethical to deprive them of their freedom on the basis of inappropriate legislation and in inappropriate establishments for that reason.

It could be argued that the involuntary detention of people with dementia on the basis of a perceived threat to self or others is unethical as it does not respect the principle of justice which suggests that everyone should be treated fairly and equally. As mentioned in the previous section, other groups of people who threaten the wellbeing and safety of themselves or others are not involuntarily interned unless they actually cause harm. But in the case of mental disorders, including dementia, depending on the definitions applied, this often seems to be the only solution envisaged. Other solutions, which would enable people with dementia to continue living in the community, are possible but they require time, effort and money. These factors alone may be considered sufficient to rule out possible alternative solutions, which is unjust. According to the Commission for Social Justice (1994), it should be recognised that although not all inequalities are unjust, unjust inequalities should be reduced and where possible eliminated (cited in Akuffo, 2004).

Subsidiarity and “reasonable accommodation”

There are at least two competing ethical principles with regard to involuntary detention, namely respect for autonomy and beneficence. On the one hand, governments have a moral duty (and sometimes a legal obligation) to respect a person’s wishes to live in their own home. On the other hand, they have a moral duty to take the necessary measures to protect that person and third parties from harm. The question is “to what extent should they respect people’s wishes to remain at home?” The principles of subsidiarity and non-discrimination and the concept of reasonable accommodation must be considered. Whilst our interest in this section of the report is linked to where a person lives or is obliged to stay, the word “accommodation” (in the phrase “reasonable accommodation”) does not in this context refer to housing but rather to adaptations or adjustments aimed at meeting a recognised need.

The principle of subsidiarity requires that the option which is least restrictive of the person’s freedom be explored first: thus, voluntary detention must be considered as an option before involuntary detention.

A more proactive approach, consistent with the principle of subsidiarity would be to adopt the social model of disability endorsed by the  United Nations Convention on the Rights of Persons with Disabilities of 2006 (CRPD) and focus in the first instance on what if any measures could be taken to keep the person in their own  home.

In the preamble (e) to the CRPD, disability is recognised as

“resulting from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others,….

This represents a move away from the medical model of disability towards one which emphasises non-discrimination, equal opportunity and human rights. In article 1 of the CRDP, the responsibility of society is highlighted and a definition of disability provided which would include people with dementia:

“The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

Discrimination on the basis of disability or age (amongst other criteria) is forbidden in article 21 of the Charter of Fundamental Rights of the European Union (200/C 364/01). Articles 25 and 26 also promote the recognition and rights of the elderly “to lead a life of dignity and independence and to participate in social and cultural life” and of people with disabilities “to benefit from measures designed to ensure their independence, social and occupational integration and participation in the life of the community”. These rights are echoed in article 15 (3) of the revised European Social Charter (Strasbourg, 1996), which promotes “the full social integration and participation in the life of the community in particular through measures, including technical aids, aiming to overcome barriers to communication and mobility and enabling access to transport, housing, cultural activities and leisure”. Article 23 of the revised European Social Charter further stipulates that appropriate measures should be taken to enable elderly people to remain full members of society for as long as possible, to choose their life-style freely, to lead independent lives in their familiar surroundings for as long as they wish and are able and for those living in institutions to participated in decisions concerning living conditions in the institution. These European Charters clearly promote the principles of non-discrimination and reasonable accommodation in relation to older people and people with disabilities.

Dementia is a disability and the necessity to make reasonable adjustments therefore also applies to dementia (Nuffield Council on Bioethics, 2009). Mental disorders, including dementia, are not always considered as disabilities even though the stigma associated with them may, in addition, be very disabling. Failure to acknowledge dementia as a potential disability may result in people with dementia not receiving the kind of protection and fair treatment envisaged in measures for people with disabilities (European Union Agency for Fundamental Rights (FRA), 2011). One of these measures is the duty to provide “reasonable accommodation”, with failure to do so being considered a form of “discrimination on the basis of disability”. These two terms are defined in article 2 of the CRPD as follows:

“'Discrimination on the basis of disability'means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation;

'Reasonable accommodation'means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to people with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms; …..”

Applying the principle of reasonable accommodation in everyday life means taking necessary steps to ensure that people with dementia feel comfortable carrying on with their usual activities such as going out to lunch, participating in church activities, doing voluntary work, going shopping and doing sport (Nuffield Council on Bioethics, 2009). Possible examples of reasonable accommodation include the following:

1: Ensuring that a person who is known to have dementia is not presented with lots of forms to sign and put under pressure to make hasty decisions. Even if the person has the relevant capacity, they may require assistance and it should be ensured that the right conditions are provided to enable them to make those decisions. 

2: Ensuring that a person with dementia is not socially excluded or unnecessarily dependent on others based on difficulties travelling alone (e.g. working out fares for public transport or having the necessary pass, organising time and finding their way to the destination and back). In such cases, assistance or the provision of organised transport would enable the person to remain socially active and help prevent premature dependence on others.

3: Ensuring that the person with dementia is not denied the freedom to continue working. Reasonable accommodation might involve adapting or changing their tasks or providing necessary assistance.

The principle of reasonable accommodation is particularly relevant in the context of involuntary detention and consistent with the principle of subsidiarity and the obligation to explore the least restrictive alternative.

Providing real choice

The involuntary detention of people with dementia based on the fact that they have dementia (i.e. a disability), combined with the perceived danger they pose, represents exclusion and restriction on the basis of disability. It deprives them of the opportunity to exercise the fundamental human right to freedom which others enjoy. The deprivation of freedom of people with dementia may in some cases entail them being uprooted from their homes and from a familiar environment, moved away from friends and relatives and subjected to rules and regulations which do not correspond to their values or previous lifestyles. This may seem to be the only solution if there is no-one to keep a constant eye of them. However, the situation can be compared to that of toddlers (without suggesting that the people in the two groups are alike). Toddlers would have no-one to look after them and protect them from harm if society were not organised in such a way as to make it possible for at least one parent/carer to stay at home and look after them. Where this is not possible or desired, crèches are available and in some cases other relatives share the task of care. Western European society does not routinely have a system of handing over toddlers into long-term care to remain there until they no longer represent a threat to themselves or others. Where this does occur, it tends to be the exception (e.g. in the case of orphans and severely disabled children), when all else has failed and it is not a satisfactory solution. Moreover, there is a movement towards the deinstitutionalisation of all groups within society. The aim of this movement is to eventually replace institutions with community-based services so as to enable people with disabilities to live their lives in the way that they want to but with appropriate support and protection (Mansell et al., 2007).

The points made above only apply to involuntary detention as some people with dementia may be quite happy to move into long-term care institutions or homes. For some, this may provide them with a sense of security and even more social contact than they previously had. However, it is not always possible for people with dementia to obtain a place in a long-term care establishment. In some countries, waiting lists for places in affordable establishments are long (e.g. two years) and establishments offering good quality care are lacking. This means that many people with dementia living at home are not in a condition to do so, which raises the issue of nonmaleficence, neglect and the abandonment of people with dementia by society. It also raises questions about respect for the dignity and wellbeing of people with dementia and represents inequity in the provision of care.

On the other hand, it is unethical to oblige people to move into long-term care or be admitted against their will to establishments (especially those which are not suited to their needs) when necessary and appropriate modification and adjustments have not been made to their living situations so as to enable them to continue living in their own homes. Part of the definition of reasonable accommodation is that it should not impose a disproportionate or undue burden. This is fairly subjective.  A consideration of what constitutes disproportionate or undue burden may differ depending on the group of people for whom reasonable accommodation might be applied. Taking the example of toddlers, State measures to ensure that toddlers can be cared for at home by at least one parent may seem a proportionate response to the need to protect their safety and wellbeing. For people with dementia, measures to ensure that they can remain in their own homes and receive individual support in order to ensure their safety and wellbeing might be considered disproportionate.  

One might ask whether this is based on differences in the perceived value of the two groups, particularly as people with dementia are at risk of stigmatisation based on dementia as well as that linked to mental illness and age (i.e. ageism). There is a risk that promoting the right of people with dementia not to be moved against their will into institutions or nursing homes would put a burden on families to provide support which they may be unable or unwilling to give. Enabling people with dementia to remain in their homes might be favoured on economic grounds as long-term residential care (e.g. in an institution or nursing home) is more costly to the State than is home care. However, this is not necessarily the only solution and even if this solution was chosen by families and people with dementia, the necessary investment and organisation would be needed to ensure that families were able to cope and that the quality of life of people with dementia would not be threatened. Such support is often lacking and many people with dementia live alone. Some may have no surviving relatives or have no contact with them. This means that numerous people with dementia are being denied the opportunity to enjoy the same right to freedom as others because society is not organised in a way which responds to their needs.

Even where true choice is possible between being cared for at home or going into residential care, neither possibility may be ideal for some people with dementia (or their families). Other possibilities need to be considered such as assistive technology and live-in paid carers. In the case of the people with dementia who pose a threat to themselves or others, this would mainly involve supervision but would in addition provide social interaction and enable them to maintain their place within the community. Alternative living arrangements might also be considered such as the “Wohngemeinschaft” in Germany which involves independent group living but with services brought into the group home if and when required. Another solution might be small homes of four to five people with dementia and one live-in professional carer albeit it in a family atmosphere. This approach is used, for example, in the Netherlands and in Belgium. In some cases, the homes are dispersed, in others there is row of such houses which makes the provision of additional services easier to organise. Possible solutions to avoid involuntary detention must be suited to the individual needs people with dementia, help reduce the risk of harm to themselves and others, and be proportionate to the perceived risk.

The necessity to consider possible alternatives before resorting to involuntary detention is enshrined in some laws and regulations covering involuntary detention. Sometimes, the possibility to provide the necessary protection within the person’s home is limited by their refusal (or that of their carer) to let health and social welfare providers in. It is also possible that the latter are hesitant to intervene in difficult situations involving decisions about autonomy versus neglect. The risk to the person with dementia in such cases could include malnutrition, self-neglect, dehydration, over-medication or under-medication and even abuse. The risk would be further complicated by insufficient knowledge as to the level of risk which may in addition increase over time. Decisions to restrict a person’s freedom may in some cases be influenced by fear of litigation.

Self-esteem and dignity

The issue of dignity is also involved and is linked to beneficence. The process of being involuntarily detained due to having dementia and representing a possible danger may be likened to other forms of detention such as that of people with other mental disorders and people who have committed crimes. In some countries, older people may also have memories of workhouses for the poor and houses of correction for homeless or disorderly people in which conditions were intentionally extremely harsh. People from these groups are or were typically stigmatised. Consequently, people who make this comparison may experience a feeling of injustice, self-stigmatisation, shame and loss of dignity. As will be discussed in section 2.3, institutionalisation involves more than a loss of freedom to choose where one resides. It is also a way of life which can be dehumanising and fail to respect people’s dignity. If people who have been involuntarily detained are not treated humanely and with dignity, respecting as far as possible their right to self-determination, it cannot be said that the measure respects the principle of beneficence or promotes their wellbeing.

1.1.2       Placement in long-term care or day care on a voluntary basis

People with mental disorders are sometimes detained on a long-term or daily basis due to their failure to protest or leave the building. If a person has not been legally detained, the various measures of protection offered by various laws and conventions which guarantee the right to liberty and security of the person (such as article 5 of the ECHR) do not apply. A person who has not been detained may therefore have less protection than a person who has. According to Gostin (2000), “Detention is a matter of “degree or intensity” (not “nature or substance”), with more severe restrictions rising to the level of “detention”.

Lack of real choice

In some countries, people are offered the possibility to be a voluntary resident/patient and be admitted on an informal basis. If they decline that offer, measures are taken to obtain legal authorisation to retain them on an involuntary basis. People may be inclined to accept voluntary status, perhaps due to the stigma attached to being involuntarily admitted to an institution on the grounds of mental disorder or perhaps due to the perception that “voluntary” implies some form of personal control over the situation. Similarly, a person might be persuaded to go to a day care centre as failure to do so would result in them being put in a care home. However, accepting the deprivation of one’s freedom in this way does not constitute a real choice. It is almost like asking somebody whether they would like to deprive themselves of their liberty or have someone else deprive them of it. It is not a question of whether but how freedom is going to be restricted. The absence of real choice constitutes a form of coercion.

Failure to protest

People may fail to protest against measures to deprive them of their liberty because they do not realise that they are free to resist or to leave. This might be the case if the process seems to be official, perhaps involving the police or the signing of documents. People with dementia who experience difficulties with language, memory and orientation may be at extra risk of confusion in this respect. There may even be deliberate attempts to create a misunderstanding. An example is the situation where a person with dementia is taken into a nursing home or respite care on an agreed temporary basis. They gradually become a long-term resident with requests to go home being ignored or skilfully managed up to the point that they give up, forget or “settle in”. In this way, people can be detained in fact but not in law. In some cases, it is possible that the person who fails to protest against entry into a long-term care establishment lacks the necessary capacity to make that decision. In that case, the relevant legal procedures should be initiated. In some countries, this may involve the appointment of a guardian with the right to make that decision. In others, it may involve a legal procedure to decide on involuntary detention. The deprivation of a person’s liberty based solely on passive acceptance of such a restriction cannot be considered as ethically or legally justified.

Following an appeal to the European Court of Human Rights regarding what has come to be known as the Bournewood case (R v. Bournewood Community and Mental Health NHS Trust), it was decided that a man had been detained unlawfully in the meaning of article 5 of the European Convention on Human Rights. The man in question, who had severe autism and a learning disability, had spent much of his life in hospital. Having left hospital and following an episode of agitation whilst at a day centre, he was readmitted as an emergency to the psychiatric hospital where he had previously lived. This was an informal admission based on his passive acceptance of the restriction of his freedom. However, his carers and a cousin challenged his detention. The High Court determined that he had not been unlawfully detained, the Court of Appeal that he had, the House of Lords that he had not and finally, the European Court of Human Rights that he had (for a period of approximately three months). One of the judges in the House of Lords, despite concluding that unlawful detention had not occurred, stated that the argument that the man had been free to leave was “stretch(ing) credulity to breaking point” (Scottish Law Commission, 2012, p.7). Similar cases of unlawful detention are probable in the case of people with dementia.

Restriction of freedom despite protest

As involuntary detention is judged on the basis of degree or intent rather than the nature of the restriction of freedom, some forms of involuntary restriction of freedom seem to be relatively ignored. Attendance at day care centres is normally on a voluntary basis but some people with dementia are cajoled or more forcibly put into mini-buses and taken there against their will. Once there, the doors are locked or they are prevented, by various means, of leaving before the set time when they are taken home or picked up by relatives. In some cases, they are free to leave, but as the bus does not return until the end of the day, they would have to make their own arrangements to return home and may not have the means or ability to do so. Many struggle in vain against such restrictions and suffer frustration and emotional distress. This may lead to obstructive behaviour which may in turn be managed by further restrictions of their liberty.

Whilst they may represent a threat to themselves if left alone during the day, the grounds for involuntary detention are either not met or involuntary detention is not considered to be in their best interests. Moreover, the option of day care may be the least restrictive measure, proportionate to their perceived needs and considered as the best option in terms of their wellbeing. Nevertheless, they have not consented to attend day care and cannot be lawfully obliged to attend or to remain there once at the day care centre. This situation is unsatisfactory as people are being unlawfully deprived of their freedom due the lack of legal process or informed consent. It would be impractical to require a legal procedure to take a person to a day care centre especially as attendance may be irregular. Also, whilst a legal process may ensure the lawfulness of a person’s presence, it is no guarantee of good care. It is therefore important to take all possible measures to enable a person with dementia to express consent or refusal and this might be best achieved by means of supported decision making (described in section 1.3.2).

The whole issue of consent is undermined in the case of non-disclosure of the diagnosis. A person cannot give fully informed consent to dementia-related issues if they do not know that they have dementia. The diagnosis is crucial information when weighing up the pros and cons of issues such as attendance at a day care centre. A proper process to determine the legal justification for the admission of people with dementia to day care centres should be put in place. This would not necessarily reduce the anguish experienced by some people with dementia at being forced to go to a centre. However, it would be more ethical and help assure better levels of protection and respect of their right to freedom.  

1.1.3       Advocacy

People with dementia are not always aware of restrictions of liberty or that they have any choice or can challenge decisions. Some may be aware of their rights but not know what to do if they are not respected, feel that no one would take their concerns seriously or not know whom to approach. There may also be power issues involved in that the person to whom complaints can be made may be responsible for the failure to respect the person’s rights or may appear to be in tacit agreement with certain unfair or discriminatory practices.  There is therefore a need for independent advocacy (i.e. for someone to speak on behalf of the person with dementia when necessary in order to protect their rights and interests). Anybody could, in theory, report an injustice or speak on behalf of a person with dementia who has concerns about an injustice or about a person with dementia whom they feel is being treated unjustly. However, it is important that advocates are recognised as having the authority to act on someone else’s behalf and are able to take the necessary action. Also, not everybody has a trusted person in whom they can confide. For the sake of justice, every person whose freedom is restricted in any way should have access to an independent advocate.

1.1.4       Recommendations on freedom to choose one’s residence or place of stay

In accordance with the principle of subsidiarity and discrimination, services and support should be developed which provide an alternative response than that of involuntary detention to situations whereby people with dementia lack capacity and represent a danger to themselves.

Such services and support, including a range of alternative living arrangements, should be adapted to the needs of people with dementia, taking into account individual preferences. Legislation and guidelines on the deprivation of freedom should include a clear definition of that term.

No person with dementia should be detained “in fact but not in law” and thus deprived of the  legal safeguards attached to involuntary detention..

There should be greater monitoring of how legislation to involuntarily detain people with dementia is used.

The conditions for the involuntary detention of a person with dementia should include proof that they not only have dementia but are considered to be in danger or at risk if not so detained.

Steps should be taken to ensure that legislation on involuntary detention does not exclude people with dementia (e.g. by being limited to psychiatric institutions or to the possibility of curative treatment).

Education and safeguards are necessary to prevent the practice of relatives “giving consent” to admission on behalf of someone who cannot or does not consent.

Health and social care professionals should be provided with guidelines and training on how to assess capacity and potential risk in relation to specific situations.

People with dementia should have the right to appeal to the court against the decision to involuntarily detain them, against the choice of the establishment and against the way they are treated once detained. To make this right meaningful they will need access to independent advocacy.

A system of advocacy should be developed for people with dementia who are being detained involuntarily or whose freedom is being restricted in any way.

The system of advocacy for people with dementia should contain measures to ensure that advocates are independent, effective and recognised.

Judges and lawyers should be better informed about the social and psychological aspects of dementia and about the nature of capacity and incapacity in relation to dementia.

Representatives of people with dementia in court cases involving a possible restriction of freedom should be attentive to stereotyping of people with dementia which might affect assessment of the necessity for involuntary detention.

Regular and timely assessments of care needs and potential threats to the safety of people with dementia should be carried out and appropriate support provided if necessary as a means to avoid involuntary detention resulting from a crisis situation.

The lawfulness of restrictions of liberty occurring in residential respite care, day care facilities and other places where people with dementia reside voluntarily should be investigated with a view to the development of guidelines and an accessible system of safeguards..

Legislation should cover the deprivation of freedom of people with dementia at home (e.g. not being permitted to leave the house or being locked in a room).

Procedural safeguards should be developed to protect the rights and wellbeing of people with dementia in residential respite care and day care, and in other places where they are not free to leave but have not been lawfully detained.

Clearer and fair consent procedures should be developed to cover decisions which might result in a restriction of the liberty of people with dementia.

The practice of supported decision making should be promoted in all discussions with the person with dementia about possible restrictions of freedom.

It should be obligatory to document any restriction of freedom, to inform the person with dementia (or their legal representative) of any restriction of freedom and to inform the latter of their legal rights in relation to that restriction as well as of the contact details of any advocacy or legal aid to which they are entitled.

Appropriate resources, practices and infrastructure should be provided to enable people with dementia to be cared for in their own home for as long as reasonably possible and desired by the person with dementia.

Care should be taken when devising protective measures and standards of care to avoid inadvertently creating situations which actually result in a loss of freedom of people with dementia as they are unattainable.

Policymakers should ensure that the decisions they take are shaped and influenced by the social context in which people live.

 

 
 

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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