Our guidelines and position on the ethical use of AT for/by people with dementia
The ethical issues linked to the use of assistive technology in dementia care
- Contemplating the use of AT
- Organisation and implementation
- How AT is used and its ongoing use
- Constant assesment
- The ongoing development of AT and its commercial distribution
This section contains guidelines for ethical decision making (i.e. suggestions of things to bear in mind when trying to come to a particular decision). It is impractical and perhaps even undesirable to try to make absolute recommendations based on the application of particular ethical principles. Ethical decision making is a complex task, situations are rarely in effect identical and even those which seem to be so, involve different people who may have different perspectives and have different culturally-determined assumptions. It is nevertheless possible to provide some general guidelines and to share our position on certain issues.
When writing this document and drafting these guidelines, we were targeting a very wide audience consisting of informal and professional carers, policy makers, service providers, voluntary workers, emergency and security forces (such as members of the police force and fire brigade), researchers, AT designers and last but not least, people with dementia for whose benefit AT is intended and who should be kept involved in decisions relating to its use.
The possible use of AT should be carefully assessed within the context of an overall care plan for a particular person, in a particular situation with specific needs, capacities and wishes. It should not be simply as a decision about whether to use a certain device or system or to use a device because it is available). The aim should not be to find a single, ready-made solution that can be applied to everyone or in all situations.
The main decisive factors should be that the AT, if used, is for the benefit of the person with dementia. An assessment of needs, risks, benefits and functional capacity should therefore be performed prior to implementing AT.
When considering what might be beneficial for the person with dementia and promote or maintain his/her functional capacity, his/her known or presumed, past and current interests, values, opinions, preferences and life history should be borne in mind but should not determine the response.
Other people with an interest in the issue should also be consulted (such as relatives, carers, legal representatives/guardians and professional carers). Perceived benefits and drawbacks for all concerned should be openly discussed.
Whilst AT should not be used solely to reduce staff costs, the real situation must nevertheless be borne in mind (i.e. is it likely in a particular situation that additional funds will ever be made available to take on additional staff to provide the necessary assistance that AT could provide.
When considering the use of AT, the following factors should be considered:
- Man whether the specific form of AT is proportionate to the need and justifiable and whether there are possible alternatives such as human assistance, other types of equipment or altering the environment or procedures;
- possible reasons for the behaviour or ways of addressing the situation which has led to the possible necessity to use AT;
- the likely consequences of using AT, or on the contrary of not using it, as well as possible alternatives. This should include a consideration of possible losses (e.g. of human interaction or contact) linked to its use;
- legislation, guidelines, codes of deontology, safety regulations and the possible wider implications for the person with dementia of using AT;
- the hopes and expectations of the person with dementia linked to the use of AT (e.g. whether they are realistic or likely to lead to disappointment);
- the interaction between the person, his/her capacity, the environment and the task or purpose for which AT could be used;
- the reactions of significant others and implications for them linked to the use of AT or of having systems installed in their home;
- the possibility that a particular form of AT might actually be a covert or overt means of restraint.aging risk
When faced with decisions about the use of AT which necessitate balancing the management of risk with the promotion of the person’s autonomy, the following should be considered:
- the real rather than hypothetical risks involved;
- the necessity to focus on risks to the individual and not primarily on risks to the establishment (care home or hospital);
- considering potential benefits at the same time as potential risks;
- people have different perceptions of risk and of what level of risk is acceptable to them;
- it is unrealistic and even undesirable to try to eliminate every possible risk in the life of the person with dementia. Moreover, this would be likely to have a negative impact on their quality of life;
- in residential settings, people are not cared for in isolation. Decisions taken for one person (e.g. linked to safety or promoting autonomy and wellbeing) may have an impact on other residents. Consequently, care staff may need support in managing competing interests in order to find the best solution for all concerned;
- the need to develop a structure with clear guidelines within which to make decisions about safety in which the risk of litigation and respective responsibilities in such cases are clear;
- staff should have an opportunity to discuss safety issues/risk management with all concerned and to make a record of the conclusions;
- blanket restrictions linked to the use (or non use) of AT should be kept to the minimum and regularly reviewed.
The use of assistive technology for the purpose of restraint (rather than to promote autonomy):
- has been linked to accidents and even death. Consequently, the use of restraint (which may sometimes be combined with AT) for alleged safety purposes should be carefully assessed and only used with extreme caution;
- should be the last resort and its necessity and possible alternatives regularly reviewed.
Doing what is best/most beneficial for the person with dementia
It should be considered whether and if so how the use of AT:
- would promote autonomy (e.g. enable the person with dementia to make decisions, foster remaining skills, help develop/acquire new skills, live as independently as possible and desired etc.);
- would be beneficial to the person with dementia;
- would respond to the needs and wishes of the person with dementia, and where appropriate, his/her carers;
- respects or corresponds with the cultural traditions of the person with dementia;
- would respect or endanger his/her dignity;
- might be harmful to the person with dementia (e.g. physically, psychologically, emotionally, with regard to his/her relationships with other people);
- might contribute towards the stigmatization of the person with dementia (e.g. negative labelling and stereotyping, considering them as part of out-group, devaluation and discrimination);
- the extent to which the person with dementia has to adapt to the AT or vice versa.
When trying to determine what is best for a person who does not have the capacity to decide him/herself or to communicate his/her wishes, it may be necessary to try to find the right balance between what is in his/her best interests (which is not necessarily what s/he would prefer) and what s/he would probably really want, based on his/her past, known, recorded and presumed wishes and indications of his/her wishes based on his/her currently observed behaviour and reactions.
When considering whether a particular form of AT threatens the dignity of the user, an attempt should be made to look beyond one’s own values and consider the life history of the person with dementia as well as his/her currently expressed needs, wishes and feelings.
Eligibility and access to AT
When determining eligibility criteria:
- people with dementia should have access to AT when it would be most suitable and beneficial to them, not solely on the basis of severity of their condition or their financial situation;
- although people who are living on their own may have a greater need for certain forms of AT to enable them to carry on living in their own homes, the availability of informal carers, for those who do not live alone, should not in itself result in access to AT being denied (as this would involve an assumption that they would provide the care);
- attempts should be made to ensure that people on a low income have equal access to AT;
- a system of renting out AT should be envisaged for people who cannot afford the more expensive items of AT and who are not eligible for financial assistance;
- care should be taken to ensure that people with dementia have equal access to AT compared to other potential user groups (such as people with physical impairments or learning disabilities) and that they are not discriminated against on the basis of age, mental health status, age or any other criterion.
Access to AT should be rapid and flexible so as to provide a timely response to current needs. It should be possible to return without difficulty or financial penalties any devices or systems that are no longer needed or appropriate (e.g. in cases where AT is rented out or provided by the State or charitable associations rather than purchased privately).
Specifically linked to tracking and surveillance technology
Tracking, surveillance and monitoring technology can be used to enhance or restrict freedom, promote or override autonomy and respect or disregard people’s desire for privacy. Different people may have different objectives and perceptions linked to the use of this kind of AT which may affect how they feel about using it, enhance their quality of life and promote their wellbeing or alternatively, lead, for example, to unhappiness, frustration, distress and low self-esteem. In order to increase the likelihood of a positive experience using this kind of AT, the following points should be considered:
- This form of AT should not be used indiscriminately as people have very different needs;
- In residential care, careful planning is needed to ensure that only the people who need this kind of AT use it;
- Devices and systems should be switched off and only switched on if and when required;
- People with dementia should not be tricked into using tracking or monitoring devices;
- The use of AT for surveillance or monitoring should not replace human contact or serve merely to reduce the number of staff needed to take care of people;
- Breaching a barrier should not automatically result in the person with dementia being returned to his/her place or room as the appropriate response may sometimes be to engage with the person or accompany him/her beyond the barrier;
- When considering the use of a video monitoring device within the home or within a residential care setting, the religious customs and convictions of individuals should be respected (e.g. women who wear a burkha, or Sikh men who wear a turban should not be filmed without their consent when not wearing it).
- Monitoring of movement or video surveillance linked to an alarm system should be sufficiently flexible to give a person some leeway in the organisation of his/her daily routine or to signal temporary changes so as not to feel controlled by the system itself (e.g. not permitting oneself to have a lie- in for fear of setting off the alarm);
- The criteria for the stimuli necessary to set off the alarm should be discussed with the person with dementia (if possible) and with other members of the household in order to ensure that it fits in with their way of life and daily routines and that those of outsiders are not imposed on them (e.g. not daring to have a lie-in lest the alarm for immobility goes off);
- In addition to live monitoring of people using surveillance, tagging and tracking devices, note should be taken of common patterns of behaviour which might permit a more tailored care plan (e.g. including activities or social contact at certain times of the day);
- Devices should be discreet so as to avoid stigmatization and users experiencing shame and low self-esteem. Such discretion should include not only the visual aspect of the devices but also the volume and visual aspect of the alert signals to carers and staff (which can be seen or heard by other people);
- Audio recording (i.e. of what people say) is unlikely to be justifiable in most situations. However, in some situations, it might be more suitable than video monitoring, especially if the device can be adjusted to prevent details of conversations being audible;
- Video recording should not be permitted in rooms with toilet facilities and seldom in bathroom areas as this could be construed as an invasion of privacy and lack of respect for a person’s dignity. Also, it could lead to people avoiding these rooms and feeling stressed or humiliated. Alternative solutions to ensure a person’s safety and provide any necessary assistance should be found;
- The use of video surveillance in sleeping areas should also be avoided unless strictly necessary;
- In cases where video surveillance is used in a person’s sleeping area, it should be possible to switch off the recorder in order to have some privacy when required;
- If the person is not capable of switching off the machine him/herself, it should be possible to make a simple verbal request without there being any need to provide justification or unreasonable advanced notification.
- As a general guideline, the issue of consent should be approached from the perspective of shared decision making, involving people with dementia, carers and health and social care/service providers, in a collaborative effort to define mutually acceptable goals of care or support.
- The consent of the person with dementia by/for whom the AT will be used should be sought irrespective of the complexity of the technology or stage of the disease.
- If s/he lacks the capacity to give informed consent, the consent of his/her carer or legal representative should be sought. The person with dementia may have sufficient capacity to state which carer or carers s/he would like to be consulted.
- Many people with dementia live alone and therefore do not have a carer. Some might not have a legal representative either. In such cases, consent to AT would have to be granted in accordance with the rules and regulations of each country concerning contractual capacity, the cost of the equipment and the probable impact on the potential user.
- People providing proxy consent should bear in mind the past and current, presumed or known wishes and preferences of the person with dementia. Past wishes may be important but the possibility to have different current wishes should be accepted.
- If the person with dementia lacks the capacity to give informed consent, s/he should be consulted, his/her assent should be sought and s/he should be kept informed of any further decisions linked to the use of AT.
- The capacity to consent should be considered as being separate from other forms of consent (e.g. a person may lack the capacity to make a will or drive a car but still be able to consent to the use of a home alarm system or a flood detector).
- Before consent or assent is given, those concerned must have been fully informed about the AT (e.g. how it works, its purpose, possible implications of using or not using it, possible disadvantages, costs involved and likely response when used etc.).
- In some cases, consent to various aspects of a device or system should be sought separately (e.g. consent to live video monitoring and consent to video recordings being stored).
- Whenever possible, an alternative to the system or device should be proposed so as to avoid there being any form of covert coercion (e.g. if you do not accept this system, you will have to go into residential care).
- As some forms of AT may be fairly complex and as people with dementia are likely to have difficulties with language, comprehension and memory, a real effort to enable the person with dementia to understand the relevant issues linked to the decision should be made (e.g. including the use of diagrams, straightforward text and practical demonstrations).
- Service providers should consider ways to allow people with dementia to test the AT before making a final decision. This could involve a trial phase of several weeks after which they could return the equipment without any penalty/additional charge.
- Even if the person with dementia has the capacity to consent, the support of his/her carers should ideally be sought, particularly for forms of AT which require their intervention or which may affect their privacy.
- It should not be presumed that informal carers or relatives will contribute towards the effective functioning of an AT system (e.g. being the contact person for tracking systems or home alarms, operating computerised systems or reminding the person to use the AT).
- In the context of professional care, people who are directly and personally affected by the use of AT (e.g. it involves them being filmed, recorded or their whereabouts monitored) should, at the very least, be informed of the use and implications of AT for them so that they can decide whether or not they wish to continue working under such conditions.
- Organisations and service providers should develop an ethics protocol linked to the use of AT in residential care and within the community. This should be signed by those taking responsibility for the use of the device or system.
- As people with dementia are likely to forget that they have consented or that a certain device is being used, confirmation of their consent (or assent) should be sought from time to time. This is particularly important in the case of monitoring or tracking devices which may be increasingly used as the person’s condition deteriorates, resulting in a greater invasion of their privacy than they originally agreed to. Written information could serve as a useful reminder.
- When choosing a residential or semi-residential care establishment or day care centre, people with dementia and any others involved in making this choice should be informed of the use of any AT in the establishment or centre which could be construed as limiting personal freedom.
Training and guidance
- Professional carers and service providers should be trained in how to communicate with people with dementia so as to increase the likelihood of them being able to obtain informed consent. They should also be trained in ethically thinking.
- When AT is installed or provided, training should be given to everyone involved on how to use it.
- Care should be taken to ensure that the person with dementia has understood and is confident about how to use the device or system.
- Training should be accompanied by advice on the appropriate choice and use of AT, covering its benefits, disadvantages, possible risks and implications for users, as well as regular updates on what is new in the field.
- The extent to which the person with dementia can manage the control of the AT should be ascertained.
- During training, the right level of control should be given to the person with dementia so that s/he can feel in control of the system or device and not feel stressed or threatened by it.
- The person with dementia and his/her carer or legal guardian should be informed what to do in case of problems with the AT and whom to contact.
- Plans (or protocols for professional carers) should be prepared which can be used when things go wrong (e.g. in case of power cuts, loss of devices or the person responsible for computerised devices being absent).
- Plans (or protocols for professional carers) should be in place regarding the maintenance and periodic adjustment of AT devices and systems.
- A climate of trust and a positive approach to problem solving should be fostered so that the person with dementia or his/her carer or legal representative are not made to feel incompetent if they encounter problems using the AT and hence reluctant to report difficulties.
- It should be made clear how to dispose of the AT when it is no longer needed or required.
- Any costs linked to the removal of the system should be clarified and the name and contact details of the person dealing with this communicated before installation takes place.
Involvement of professional carers (for residential and home-based care)
- In the case of tracking, tagging, surveillance and monitoring devices and systems, procedures and responsibilities of professional carers should be made clear and recorded in the individual care plans of people with dementia.
- Details of anyone allowed to view recordings of video surveillance should be disclosed, if requested, to those using the devices and/or their carers or legal guardians.
- A record should be kept of any other person accessing video recordings or watching live recordings of a person with dementia, professional or informal carers, or visitors.
- The right to privacy of professional carers (for whom the video surveillance is not personally intended) should be considered and, if necessary, they should be provided with a private unmonitored rest area.
- Service users or their carers or legal representatives should have access to the names and job titles of the people authorised to access video recordings of the person with dementia.
- Measures should be taken to ensure that:
AT is not being used in a way that infringes on a person’s civil liberties, as a form of coercion, in an abusive manner or as a means of social control;
confirmation that the person with dementia still agrees to the use of AT is sought at regular intervals;
changes in the way that AT is perceived over time as well as changes in the capacities of the person with dementia are taken into consideration;
the use of AT is not perceived, especially in residential care settings, as granting privileges to some people and not to others or as a form of punishment (even if this is clearly not the intention of those in charge of its use);
AT is used discreetly so as to avoid inadvertently “labelling” the person using it as this may contribute towards stigmatization or lead to self-stigmatization including feelings of shame, humiliation, social withdrawal and low self-esteem;
the device or use of a system is not perceived by the user or others as ridiculising, infantilising or undignified;
the device or system does not draw unnecessary attention to a problem that is embarrassing to the user or threatens his/her dignity (as perceived by the user or other people);
AT does not provide a greater degree of assistance than that which is actually needed (perhaps due to a lack of time or assistance to enable the person to accomplish the task alone), thereby leading to a premature deterioration of the person’s remaining capacity;
the use of AT is not stressful and does lead to, or increase, confusion;
AT used for leisure or recreational purposes appeals to the current wishes and interests of the person with dementia;
AT for leisure or recreational purposes is not imposed on people (e.g. in order to occupy a large number of people with a limited number or staff or because it reflects the values or philosophy of life of those organising such activities);
conflict over perceived ownership as well as attachment issues linked to the use of socially assistive devices/robots are effectively addressed and if possible avoided;
people with dementia feel in control of the AT they are using, especially in the case of socially assistive devices/robots;
any negative experience with AT is investigated and a personalised solution sought because the same device or system can be used and perceived in different ways by different people;
concerns are taken seriously, however strange or illogical they may seem (in some cases, they may be based on a lack of information or a distorted perception of reality due to the consequences of dementia but nevertheless real concerns to the person with dementia).
- A certain degree of visibility of the device may be unavoidable or necessary but care can be taken not to draw unnecessary attention to it. This may require special effort in residential care settings or wherever people live together (not only regarding the physical visibility of the device or its use but also in the way that professional carers or relatives talk about it in public).
- Once operational, a system should be established to review the use of AT, provided that the person is in agreement. This should cover needs, benefits, risks and functional capacity and such assessment should be constant as a person’s condition and situation may change rapidly.
- Possible reasons for decreased interest in a particular device or system, difficulties using it, failure to see the benefits of it or simply forgetting to use it should be explored. People should not feel under pressure to use AT or be penalized for not using it. Instead, service providers should seek to understand the problem and then attempt to provide an appropriate response.
- Reviews should involve the views of the person with dementia, carers and professionals. As with consent, every reasonable attempt should be made to enable people with dementia to communicate their views.
- Attention should be paid to possible ways in which the use of AT has an impact on existing relationships and power relations. Should this occur, measures should be taken to help people deal with these issues.
- The review process should be carried out in a constructive way with every attempt made to avoid making people with dementia and carers feel that they are being tested or judged.
- As the use of AT should be part of an overall care plan, a review of its use should reflect this too.
- The review should assess whether specific forms of AT are still appropriate for the person with dementia in view of his/her changing needs, capacities and living situation.
- The information obtained from such reviews should be used to assess the appropriateness and desirability of its continued use.
- Provided that consent has been obtained from users, anonymised data from such reviews should be made available to interested parties (e.g. AT manufacturers and researchers) to enable them to improve the design and use of AT for people with dementia.
- Care should be taken to ensure that people are not left without assistance if AT is eventually withdrawn or proves to be ineffective.
- Research and development into AT should be user-driven. Researchers and AT developers should actively involve people with dementia and informal and professional carers in developing, testing the effectiveness and assessing the usefulness of various devices and systems.
- People with dementia and informal and professional carers should be encouraged to share their ideas and discuss their problems with researchers and AT developers so as to stimulate the development of new forms of AT and ensure that devices and systems correspond to the needs and wishes of potential users.
- Researchers and AT developers should take into consideration not only information about difficulties linked to various impairments but also of the needs and wishes of potential users (e.g. linked to feelings of independence, control, aesthetics and ease of use).
- Information materials, produced with the assistance of people with dementia, as well as courses or workshops should be made available to AT designers to enable them to familiarise themselves with dementia and to develop AT which corresponds to their needs and wishes.
- As a high percentage of people with dementia are elderly, the design of AT for their benefit or use should incorporate features to facilitate their use of the device or system (e.g. taking into account possible difficulties with sight, hearing, mobility and dexterity).
- Researchers and AT developers should obtain the necessary ethical approval for all studies and consultations involving people with dementia, carers and professional carers. If the study does not qualify for assessment by a recognised ethics committee, advice should be sought from an Alzheimer association.
- In countries or situations where research into the development and assessment of assistive technology is either not regulated by ethics committees or not considered as research, guidelines and codes of conduct should be established, especially when people with dementia are involved.
- A protocol for the management of personal data should be established. Only personal data that is necessary for the study or product development should be obtained, it should be rendered anonymous if possible, it should not be used for any other purpose than that for which it was obtained without the person’s permission and it should be destroyed at the end of the study or within a reasonable period of time thereafter. All other provisions of data protection laws should be respected.
- Commercial providers also have an ethical responsibility towards potential users of AT in the context of dementia. They should provide information to potential users about the possible implications of the use of various devices including possible drawbacks, risks and alternatives. The information about products should be easy to understand and not make any exaggerated or unfounded claims.
- Commercial providers who deal directly with potential users of AT devices or systems should encourage potential users to discuss with the relevant organisations how to incorporate their product into the care plan of the person with dementia. In the case of AT for leisure purposes, advice could be provided on how the device might also be used to enhance social interaction and wellbeing.
Last Updated: lundi 23 avril 2012