Ethical issues linked to the use of specific forms of AT
2010: The ethical issues linked to the use of assistive technology in dementia care
- Respecting autonomy - the issue of consent
- Leisure and social inclusion
- Socially assistive robotics
- Eenhancing safety and wellbeing in the home
- Memory and mobility
- Surveillance, safety and monitoring
Obtaining informed consent or assent
Difficulties obtaining the informed consent of people with dementia for the use of AT are quite similar to those linked to consent to medical treatment. Care must be taken to ensure that the person with dementia understands the information that is given, can retain it long enough to make a decision and can express his/her decision. This may sometimes be difficult due to the technical aspects of some devices (Fisk, 1997).
Consent must amount to more than agreement to the use of AT without understanding its function (e.g. consenting to wear a bracelet without realizing that it enables other people to monitor one’s whereabouts). Certain types of tracking device cannot be easily discarded which means that once they have been put on, the person with dementia no longer has the freedom to take them off, even if they are cumbersome or s/he later objects to their use. One system requires two hands to take the bracelet off (Miskelly, 2004). This puts people using such devices in a vulnerable position in which they have no power and may feel humiliated and trapped.
Different ways of presenting the information can be used and measures can be taken to check whether the person has really understood what is at stake and the consequences for him/her. There may be a tendency to conclude too hastily that the person does not have the capacity to consent and to ask carers instead. However, even in the case of incapacity to consent to the use of a particular form of AT, the person with dementia should be involved in the decision making to the greatest extent possible.
The capacity to consent is likely to deteriorate over time and in some cases may fluctuate from day to day or at different times of the day (Jacques and Jackson, 2000). A person may therefore consent to the installation of surveillance equipment but later not be aware that s/he is being monitored or able to reaffirm or withhold consent. Yet his/her desire for privacy may change as the disease progresses. It might be possible to obtain his/her views on the matter if the necessary time and effort were taken but the de-installation of the equipment might involve costs which the person with dementia would have to be able to consent to. For this reason, Essén (2008) emphasises the importance of having built-in possibilities to exit such services.
People who are responsible for obtaining the informed consent of people with dementia for the use of AT devices or systems should have received training in relevant communication methods as otherwise it could not be said that such consent had really been sought. This would mean that the rights of people with dementia had not been respected (Martin et al., 2010).
Ensuring that consent is given freely
It is important to obtain the person’s free and informed consent before installing or using AT. In the case of movement monitoring, for example, a person may be willing to sacrifice a certain degree of privacy in return for the benefits that s/he believes the device will bring but consent must not be based on pressure (e.g. the person being told that otherwise her/his husband/wife will not be able to sleep) or presented as the only option (e.g. being told that otherwise there will be nobody to help in case of need, that the use of such devices is standard policy in a particular nursing home or that it is obligatory for insurance purposes).
Perry, Beyer and Holm (2009) draw attention to possible coercion which may be subtle and even unintentional e.g. the fears of staff about the use of AT being passed on to the potential users. People with dementia who are in hospital or residential care are in a vulnerable position in that they may fear retribution if they do not consent to the use of AT. Alternatively, they may be inclined to give a socially desirable response particularly if the person asking is perceived as having a higher status than them.
In the case of learning disabilities, it has been found that some people with learning disabilities have a tendency to acquiesce (i.e. respond positively irrespective of the question asked) and to select the last of two possible options given (i.e. if asked whether they would like tea or coffee, they would say “coffee” but if asked whether they would like coffee or tea, they would say “tea”) (Sigelman et al., 1980 and 1982). It has been reported in connection with a person with dementia (Redfern et al., 2002) but it is not known whether this is common although it could at least apply to some people with dementia with learning disabilities.
Of course, it would be an over-simplification to portray people who are monitored, tracked or tagged as passive victims manipulated by care providers, as they have something to gain from this kind of AT such as a sense of feeling cared for and protected in the privacy of their own home (Essén, 2008).
When AT affects other people
The issue of consent is further complicated in group settings where one person’s desire to use AT may infringe on another person’s right to privacy or the other person may object to the use of a certain device or equipment (e.g. in the case of video surveillance of a shared room or of communal areas such as kitchens and lounges) (Bharucha et al., 2006; Perry et al., 2009). People sharing a room might also have different levels of capacity to consent, with some being able to decide themselves and others not.
Shinoda-Tagawa et al. (2004) have described the use of video surveillance as a means to investigate resident-to-resident violence. However, as almost 50% of violent acts reportedly occur in residents’ private space, this raises issues linked to privacy and in the shared areas to obtaining the consent of all concerned, including visitors (Sifford and Bharucha, 2010).
Staff also have a right to privacy. When used as part of a research project, it has been suggested that care staff who object to video surveillance could be temporarily reassigned to another unit (Sifford and Bharucha, 2010) but clearly such a solution is likely to be unrealistic in the case of prolonged use of such surveillance. It is possible that the consent of staff to the use of surveillance equipment is not always requested, but in cases where they are informed in advance of its installation, it has been suggested that their continued employment may be considered as implied consent (Carlson, 2001; Bharucha et al., 2006). However, with high levels of unemployment in most countries, people may feel that they have less freedom to decide not to stay and as equipment is introduced into more and more establishments, this might even necessitate a change of profession, which for some people may seem impossible if they have specialised in that particular domain. Consequently, it could be argued that a certain degree of coercion is present in such implicit consent.
Communication and social interaction
Multimedia software can be used in a variety of ways to stimulate physical and cognitive capacities, and to increase social interaction or contact with the outside world. Computer-based activities, for example, may be either solitary or involve interaction with others. Some may be based on cognitive stimulation; others may provide a pleasant experience or be combined with physical exercise. Whilst elderly people of today are not generally as knowledgeable about computers as the younger generation, using computer technology may help bridge the gap between generations and provide a common interest or activity which can be shared with younger people, thereby promoting inter-generational social interaction and in some cases helping maintain family ties.
The use of various devices has also been shown to promote social interaction amongst residents in residential care. An example is the picture gramophone which was developed in Finland and tested in the ENABLE project in some residential care homes. This is an easy-to-use device which does not necessitate any knowledge of computers. By simply touching icons on a computer screen, people with dementia can listen to the songs of their choice and see the lyrics displayed on the screen. The results of the study showed that it created social interaction (with two to three people using it together), led to singing/humming and was an enjoyable activity (Topo et al, 2004). In a different study involving the use of touch-screen displays for photos, videos and music for reminiscence work, it was found that this approach gave people more control over the direction of the conversation which in turn resulted in more prolonged engagement in the conversations (Castellot-Lou et al., 2010).
Such devices could presumably also be used in people’s homes. A possible drawback may be that some people who are not involved in the activity may overhear songs which they find annoying or which are associated with painful memories from the past.
The “window on the world”, described by Orpwood et al. (2007), relays images from the outside onto a screen, which is located in the person’s living environment. The images might be of people moving about outside, of visitors in a common room or of the garden (depending on where the camera is placed). This device might raise ethical and legal issues linked to obtaining consent or at least informing people that they are being filmed. Concerning people with dementia, this technology has the advantage of creating a link to the outside world as well as providing stimulation, perhaps creating opportunities for social interaction amongst viewers, but may also be enjoyable for people who are bored just sitting down all day with nothing to do. It might also be appreciated by people who are bedridden or have serious problems with mobility. It also has the advantage of being suitable for people who have great difficulty communicating but should not reduce efforts to maintain real human contact with them.
A drawback to such a device (and to the others mentioned in this sub-section) is that in communal settings, some people may find it annoying, disturbing or an intrusion into their personal worlds. Careful planning and attention to the location of such devices may help prevent other residents being disturbed.
Some forms of AT, such as video-telephoning, can be equally important in breaking the isolation of carers as that of people with dementia. It may also serve as a means of mutual support amongst carers or to help maintain communication between couples when one goes into residential care (Sävenstedt et al., 2003). Video-telephoning may also enable relatives and friends who are unable to visit as regularly as they would like to keep in touch with a person with dementia in residential care, reassure themselves that s/he is alright and perhaps reduce feelings of guilt about not visiting (Sävenstedt et al., 2003). In a study which set out to assess the level of satisfaction with such equipment, it was found that some carers received support from other carers during the bereavement process following the death of the person with dementia during the study (Magnusson and Hanson, 2003). The researchers felt that it would have been unethical to withdraw the equipment at that time and they draw attention to the risk of people becoming dependent on equipment which is subsequently withdrawn.
Video-phoning, like monitoring for safety purposes, may be perceived as an invasion of a person’s privacy. Whilst someone is sitting in front of the screen talking to someone, anyone who walks past may be captured on screen against their will or without their knowledge. In families with children and teenagers, it is unlikely that every one of them would have been asked to consent to the installation of such equipment. There may also be visitors who are unaware that their image is being recorded. Some people are very susceptible about their image and would be disturbed if they realised that they had been filmed in their pyjamas, without make-up, wearing curlers or having just woken up etc.
The person using the video-phone should also have a certain degree of privacy. For this reason, it would be good to have the video-phone in a separate room or private area but not all households have this option.
Having an open-line video-phone system, which is permanently switched on, opens up the possibility of professional carers or relatives using this system to ensure from a distance that the person with dementia remains in the home. This could be interpreted as a form of non-maleficence but it could also be considered as a form of restraint in that the person may feel compelled to comply (Magnusson and Hanson, 2003).
It could be argued that certain activities are inappropriate for elderly people and that encouraging people with dementia to participate is demeaning and fails to respect their dignity, particularly when it concerns activities that they would not, in the opinion of others, have done prior to having dementia. This is based on three assumptions: 1. that there are activities which are appropriate for certain age groups and others that are not 2. that people’s likes and dislikes do not change over time, and 3. that if they do change, after a person has developed dementia, they should not be considered as valid. Each assumption could be challenged.
People with dementia are constantly adapting to new situations and the experience of having dementia may result in a different outlook on life and even changing interests. It would be a mistake to consider every change as being linked to damage to the brain (Kitwood, 1993). Possibilities to engage in activities may arise which were simply not previously envisaged but which nevertheless prove rewarding. Moreover, the social and leisure activities of elderly people have already changed considerably in the last few decades, perhaps due to older people being physically fitter, having fewer family and professional responsibilities, greater purchasing power and better mobility than in the past (Föbker and Grotz, 2003).
Some concerns about dignity may be valid and care must be taken to ensure that people are not being pressurised to take part in activities which they personally find demeaning or of no interest. However, attention must also be paid to ensuring that a person’s autonomy is respected and his/her current wishes respected. As Lawrence (2007, p.555) points out, “Caring transforms family relationships, and carers may fight to protect and preserve their own image of the person with dementia, with the risk of losing contact with his [sic] present needs and identity.”
Socially assistive robotics (SAR) is an area of AT which is still very much in its early stages, particularly for use with people with dementia. Most of the information in this section is taken from the writings of Sherry Turkle (2007) and Feil-Seifer, Skinner and Matarić (2007). Please see the references section for full details.
There are different kinds of SAR systems such as companion robots which provide a focus of attention (e.g. in the form of a soft toy/animal which responds to touch or sound), or non-contact assistive robots which provide support in social interaction with little or no physical contact. A companion robot that has received a lot of attention in the media recently is “Paro” the baby harp seal developed by Dr Takanori Shibata. The producers of this robot divide companion robots into four categories:
- familiar animals such as dogs and cats
- non-familiar animals such as seals, penguins and whales
- new characters and artificial animals
and consider Paro as being in the third category (National Institute of Advanced Industrial Science and Technology (NIAST), 2010).
According to Feil-Seifer et al. (2007), the use of companion robots has led to reduced stress levels and increased social interaction amongst residents in nursing homes. Robots can also be given a kind of personality, e.g. serious or playful. This may affect how people with dementia react towards them and feel about them.
SARs can have varying degrees of human-like appearance or qualities or with companion robots, varying degrees of similarity to living creatures. Turkle (2007) claims that this may create social side effects with ethical ramifications. A person may become attached to the robot but may have to share it with other people, the robot may break down or the person may be moved to another unit or home and have to part with it. He/she may come to consider the robot as “real” and become disappointed by it. In an exploratory study into the psychological effects of domestic AT, Cesta et al. (2007) found a clear preference by elderly people for the “no-face” version of a prototype assistive robot and that the “no-face” version resulted in deeper psychological attachment.
The designer of Paro (the baby harp seal robot) experimented with companion robots representing animals with which people were more familiar such as cats. They found that the initial reaction was very positive but that people soon started to make comparisons between the robot and real cats and were soon disappointed that the robots did not feel the same or react the same as cats they had known. They did not tend to do this with the seal which is an animal that most people are not familiar with, but found it very cute and developed an emotional attachment to it (NIAST, 2010).
Evidence that attachment is not limited to lifelike creatures was provided by a study into children’s use of “Furbies” (please see image). The children had formed such close emotional bonds to their Furbies that when the creatures broke, most children did not want a brand new replacement but rather the old one mending or “cured” (Turkle, 2004). These findings cannot be generalised to people with dementia but provide useful insight into the human capacity to attach to inanimate objects.
Another concern linked to the use of SARs is their authenticity or rather lack of it. Some people may feel that there is something uncanny about a computer which seems to show concern or exhibit caring behaviour, whereas others might appreciate this or simply have no problems with it. In the 1970s a famous computer programme known as “Eliza” was developed which was capable of mirroring input and providing supportive feedback. For example, to the statement “My mother is making me angry,” the computer might respond “Tell me more about your family.” On the basis of observation of students interacting with Eliza, Turkle (2007) suggests that they were not pretending to be chatting with a human but actually enjoying talking to a machine. A more recent example is the Tamagotchi and similar devices/creatures which promote a desire to nurture and the illusion of reciprocation (Turkle, 2007). Some SARs can be programmed to make eye contact based on detection of where a voice is coming from. SARs are different to traditional teddy bears and dolls in that they are active, demand attention, require nurturing behaviour and/or react to the user’s behaviour.
The use of SARs by people with dementia is probably fairly limited at the moment. Ethical questions may nevertheless arise such as whether it is right to give SARs of this kind to people whose ability to interact with humans is declining, who might at some point be unable to understand that something is not “alive” and who may be feeling isolated. However, one could also argue that anything that makes a person feel cared for, wanted, of interest to someone/thing else and drawn into interaction can only be a good thing.
Although SARs are not human, programmed reactions towards the behaviour and movement of the user may affect users’ sense of privacy in that people may feel that they are not alone (which can also be positive) or that they are being watched. If the user can control privacy levels, such problems can easily be overcome. SARs may also increase the level of privacy by side-stepping the need for human assistance for tasks which are potentially embarrassing or private (e.g. going to the toilet or getting washed). This may also serve to protect the user’s dignity.
Autonomy and safety
SARs could be used to carry out certain tasks on behalf of the user or to provide a sufficient level of support to enable the person to complete the task him/herself. This should promote the autonomy of the user. Cesta et al. (2007) divided the possible tasks of a domestic robot into two categories: on-demand interaction (in which the user takes the initiative and might ask the robot: have I taken my pills today, have I already had lunch or where are my keys?) or proactive interaction (in which the robot may detect certain programmed danger and warning scenarios such as the person lying on the kitchen floor, and take the appropriate action).
However, the degree of autonomy granted to the robot must be appropriate and carefully monitored, with the user retaining as much control as possible and if necessary, constant monitoring from carers or healthcare professionals (e.g. in the case of SARs dispensing medication) (Feil-Seifer et al., 2007). In the case of SARs designed to promote social interaction, a certain degree of autonomy of the robot is perhaps needed.
As people with dementia may at some point experience difficulties with mobility, vision and coordination, it is essential that SARs are stable and not likely to provoke accidents (e.g. through their colour, size, shape, movement or sound). In all cases, users need to feel safe using the robot and positive about it. People should avoid patronising those using various forms of assistive technology.
Dignity, truth-telling and confusion
As people may feel more or less at ease interacting with SARs, the interaction promoted and required by the SAR may suit some people more than others. It could even be problematic if people realise that they are dependent on the SAR but feel ridiculous using it. It may remind them of the human contact that is not available to them. Some may be confused by the robot, not understanding how it works, what to do to make it work or what triggers its actions. As some people with dementia suffer from confusion and delusions, the use of SARs may lead to fears about intrusion in their home. It must be clear to them that they can get rid of the SAR if they don’t like it and have access to alternative support for their needs.
Some of the ethical issues linked to doll therapy could be applicable to the use of companion robots. For example, it could be argued that the person with dementia who comes to believe that the device is living is being deceived. A counter argument would be that not correcting the person with dementia concerning this belief provides them with the opportunity to participate in a rewarding and meaningful activity, and to adopt a nurturing role (Andrew, 2006). Such deception linked to good intentions is what Marzanski (2000) would call “justifiable benevolent deception”. Whether it is actually justifiable is a matter for debate. However, it must also be borne in mind that a person (adult or child) who actsas ifan object is alive, does not necessarily believe that this is the case.
Detectors and monitors fitted to everyday equipment and stand-alone devices
Various devices and systems can be installed in people’s homes which result in a safer environment for people with dementia as well as peace of mind for them and their carers (provided that the devices and systems function properly and can be easily used). Such AT can therefore promote autonomy and safety. Blackman et al. (2003) suggest that despite attempts to create a safe environment where people have quality of life, there is a risk of the home starting to feel like a prison. They emphasise that supporting independence (e.g. through the use of AT) is no guarantee against exclusion and criticize disabling environments, adding that in some cases a person’s impairment may be removed by a suitable adaptation of the environment.
Buildings are now being constructed which incorporate as standard features various forms of AT such as cooker monitors (to detect gas, smoke and rings which have been left on), pictorial object locators, water level and temperature gauges, pressure sensors, automatically activated lighting and a range of other monitoring devices. Such buildings are sometimes called smart homes.
AT can be active (involving some purposive action on the part of the user) or passive (responding automatically to the behaviour of the user or to other conditions such as smoke, rising heat or water level). In the case of active AT, it is more likely that the person with dementia will be aware of it and have some degree of choice regarding its use once installed, whereas with passive AT, the user does not have the same degree of control, save uninstalling the equipment (not an easy task for many people) or getting rid of it. Different kinds of safety devices therefore have the potential to increase autonomy and safety but autonomy also involves the ability to choose and this may be affected by the type of AT used. When a person moves into residential care where such technology is used, it is possible that he/she will not be aware of the various devices used and will only find out later. In such cases, he/she would not have consented to its use as it was pre-existent and may be unhappy about its use.
There are also numerous stand-alone devices which may contribute towards self-esteem, autonomy, safety and wellbeing (as mentioned earlier depending on the devices, the people involved and the situation) such as picture telephones, digital pens, calendar clocks and medicine dispensers. Some of these devices may enable people with dementia to maintain social contact with family, friends and the outside world thereby helping avoid social exclusion and helping ensure recognition of their personhood.
In the case of people who do not live alone, the extent to which certain devices are visible to others may affect their sense of pride and dignity. If too obvious, the people for whom they are intended may feel incompetent and embarrassed, especially if people visit and ask what they are for. If such devices were installed on a large scale as standard features, this would be less likely.
Some devices, such as movement sensor light switches, may be confusing if the person with dementia has forgotten either how they work or having consented to their installation. Whilst certain devices may be experienced as contributing towards autonomy and thus reassuring, for some people, they may serve as a reminder of their own loss of capacity, loss of personal control over their lives and disability (Gitlin et al., 1998).
In some cases, elderly people may rely heavily on the AT device or system to the extent that they trust it more than they trust their own judgement. If the device then malfunctions and gives out faulty information (e.g. regarding taking medication), they would be less likely to detect the error and this makes them vulnerable (Ho et al., 2005). Apart from the need to take this into account during the design of various forms of AT, regular review and maintenance of AT is needed. Providers of AT also have an obligation to ensure that it is safe and reliable, particularly when used by people who may not have the capacity to check this themselves.
As some devices for use in the home are fairly expensive, their use raises concerns about equity. Clearly, people with a higher income will have more opportunity to obtain them although some devices may be financed to some extent by the State. This will differ, however, from one country to the next and may be dependent on certain conditions such as whether one lives alone, the severity of one’s condition and one’s level of income.
Finally, service providers may be hostile towards the introduction of AT in the home as they may feel that it is a threat, seeing it as an alternative to the personal service they provide in the home (Magnusson and Hanson, 2003). There is possible agreement from carers and people with dementia that AT should not replace human contact but on the other hand, decisions about this are most probably influenced by economic concerns and as stated earlier, it is the quality of human contact that is important, not the quantity.
Monitors and alarms linked to the person and his/her activities
Balancing discretion with transparency
Enuresis monitors may be a source of shame, particularly if they are visible to others or known about. However, they may also promote dignity by preventing accidents from happening in the long run due to careful analysis of the times that accidents tend to occur. Such monitoring may lead to the provision of timely support. Preventing enuresis may reduce embarrassment and the need to depend on others for hygiene needs and changing sheets, thereby also promoting autonomy.
As with most forms of AT, the visibility and invasiveness of the system may be disturbing to some people, especially those who do not need to use it. For example, it may be necessary to install a computer in the living room or monitors around the house or there may be visible wires and buttons. Certain equipment, such as hoisting devices, may be very obvious and cumbersome (check if this is the case). When obtaining consent for the installation of assistive technologies, cohabitants should therefore also be consulted as installation may represent an invasion of their privacy.
Finally, whilst it is important to make AT unobtrusive when fitted in people’s homes, there is an argument in favour of making sure that it can be seen, especially in the case of equipment designed for monitoring purposes. Being able to see the equipment, to see when it is switched on and to control it (to the extent that the user has the necessary capacity) has implications for consent, autonomy and management of privacy issues.
Privacy and autonomy
AT for the monitoring of falls (or to signal distress) can be active or passive. Some systems require the person to press a button (e.g. on a pendant or phone), whereas others react to the detection of sudden impact or prolonged immobility. Those which do not require purposive action may involve some degree of invasion of privacy in that they may record and transmit information to other people about the user’s activity. Some may even involve video monitoring. Systems which are more intrusive may nevertheless be most appropriate for certain individuals and permit greater autonomy.
Whilst various forms of AT may promote autonomy and provide safety, concerns are often expressed that AT should not be used to replace human contact. Indeed, one study found that the use of AT was in some cases dependent on a carer being present to remind the person to use it (Cahill et al., 2007). On the other hand, people with dementia have also expressed satisfaction about not having to rely on other people so in some cases, an advantage to AT could be that it enables people to express their independence. Talking about a night and day calendar, one person commented:
“It’s the best thing I’ve ever got, I don’t have to ask Deirdre (caregiver) what day it is. It gives me a sense of…. independence. I don’t have to be running to Deirdre.” (quoted in Cahill et al., 2007, p.137)
Autonomy and safety
The use of televideo monitoring for the self-administration of medication by people in the early stages of dementia helps promote autonomy but also has implications for safety. People using the technology may fail to respond to it or simply be out of the house when it is activated. This is not unusual as people in the mild stages of dementia, for whom the technology is mainly intended, may be leading fairly active lives and be less bound to the home than those in the later stages (Smith et al., 2007). They may also inadvertently switch off the monitor or camera. Such technology therefore has the advantage of promoting autonomy but may result in a false sense of security, which must be borne in mind when trying to balance the two principles. In a small-scale qualitative study in which 8 people using such a system were interviewed, it was found that some people appreciated the personal contact with the caller/operator which shows that technology can sometimes be combined with additional human contact rather than merely replacing it (Smith et al., 2007).
Determining who is granted access to the control of the AT is an important factor in the ethical use of AT. Provided that it would be safe to do so and that the person understands the consequences of doing so, the person using the AT should be able to switch it on and off, if and when required, as otherwise his/her continued consent to its use cannot be guaranteed.
AT can be used as a memory aid to enable people to carry out tasks which would otherwise be difficult or impossible to accomplish on their own due to difficulties remembering what to do, which items are needed for the task or which order to carry out each stage of the task. For example, a video prompt for every step needed to prepare a cup of tea or coffee can be used, based on a recording made in the person’s own kitchen (Davies et al., 2010). This may enhance self-esteem and promote autonomy and wellbeing. However, the various capacities of people with dementia deteriorate over time. Consequently, there may come a time when the device no longer promotes autonomy but rather represents a risk for the person’s safety (e.g. through scalding or electrocution).
Similarly, with a computer-based device which gives a reminder consisting of a symbol and text that a door has been left open (e.g. a door of the house or the fridge), it will only work if the person with dementia understands the symbol or text message and goes to close the door when the message is shown. If others with an interest in the safety of the person with dementia presume that the device is working, they may have a false sense of security and an alternative, perhaps more effective, approach would not be tried. Awareness of dementia and regular assessment of the person with dementia and the appropriateness of various AT solutions are therefore essential.
Proportionality, dependency and isolation
It is important to respect the principle of proportionality which means that the level of intervention should be restricted to what is really needed for a particular person in a particular situation. Providing more assistance than is actually needed may result in the premature loss of remaining capacities which Kubitschke et al. (2009) argue may foster a new form of dependency (namely on AT rather than on other people) and that this may be experienced by some people as dehumanising and reducing dignity. Furthermore, if the AT is introduced as a replacement for human assistance, the transferral of dependency may result in a loss of human contact, and hence in increased isolation.
Sensors/detectors can be useful devices enabling carers to rest, sleep or attend to other matters in the safe knowledge that they will be alerted by a signal should the person with dementia get out of bed in the middle of the night or out of a chair perhaps during the day and possibly need assistance. In a residential care setting, such devices could make it easier to ensure the safety and the provision of assistance to a larger number of people at the precise moment that it is needed. A night-time monitoring was recently tested which allows zones of varying degrees of perceived danger to be identified and linked to varying tones of urgency (Spring et al., 2009). This device also permits the control box (where the signal is heard) to be placed in a different room to that where the person with dementia sleeps which was found to enhance privacy for both carers and people with dementia.
Safety and restriction of liberty of movement
Although there is considerable evidence that restraint increases the likelihood of falling and also some evidence that it can lead to serious accidents and even death, people who have dementia or are confused are more likely to be restrained (Burton et al., 1992; Capezuti et al., 2002 and 2007; Gallinagh et al., 2001; Gastmans and Milisen, 2006; Sullivan-Marx et al., 1999). Kwok et al. (2005) investigated, by means of a randomized controlled trial, the use of pressure detectors to alert staff that elderly people in a convalescent hospital at risk of falling had moved from their bed or chair (i.e. so that they could be assisted by staff if necessary which would be preferable to using restraint). For one group of residents trunk restraint, bedrails and chair boards were used and for another group bed-chair pressure sensors were in addition made available to staff. No significant differences were detected in the number of falls, mobility, transferability or the amount of time that residents had to endure physical restraint. The researchers conclude that staff had only used the pressure sensors selectively as an additional means of safety. This suggests that AT may have the potential to serve as an alternative to the use of physical restraint (which can rarely if ever be justified on ethical or safety grounds) but that adequate training and explanation must be provided.
Movement sensors/detectors can also provide information at a distance that the person has not moved (i.e. that s/he has not remained immobile for a lengthy period of time) which could in some cases be an indication of a fall or problem. However, rather than providing a sense of security, such devices may in certain cases serve as a means of control or of imposing a daily rhythm on a person that is not his/her own. For example, a person may want to sleep or lie down for several hours during the day but fear triggering the alarm and so refrain from doing so.
Movement sensors/detectors may be perceived as an invasion of a person’s privacy. A senior citizen who had been trying out movement detector surveillance equipment complained about this and about the way she felt controlled:
“I don’t want people to know when I take a nap… when Toy[her dog] and I are lazy… that’s only between him and I … they know enough about me. I want to spare them my strange habits…
“…at times when I can’t sleep and get up in the middle of the night I sometimes think that this might be seen … which makes me reluctant to do so!” (Essén, 2008, p.133)
While (2006, p. 362) sums up the issue of privacy and control as follows:
“Older people, like everyone else, are entitled to vary their daily routine without consultation and it should not result in the arrival of a rapid response care team to whom they have to justify their lie-in.””
Some devices can be used to monitor the behaviour of the user via their use of equipment (e.g. recording how many times he or she opens the fridge door or measuring the weight of the fridge), which might help determine eating habits and whether food is being eaten, hoarded or thrown away (Van Hoof and Kort, 2009). Whilst the person with dementia may be aware of the use of such devices and have agreed to their use, they may nevertheless feel embarrassed or humiliated if they perceive this as infantilisation or unwelcome surveillance. It is therefore necessary to ensure that these devices are as discreet as possible and that their use is kept confidential (particularly in nursing homes where people live in community with other people whom they do not necessarily know very well).
The intrusion of people’s privacy can be limited by the type of equipment used. Movement detectors, such as the “just checking” devices described by Price (2007) can be used on a temporary basis in order to find out how a person behaves in his/her home in order to devise an appropriate care package. The devices are small, wireless and do not record any visual image. Access to the resulting chart can be controlled by a password protected website.
Privacy, dignity and personhood
Electronic surveillance, which could include closed circuit television (CCTV) and video surveillance, takes monitoring a step further in that it adds the visual image of the person being monitored. CCTV is used extensively in the UK in the public domain but in some countries much less or hardly at all. In the private sphere of a person’s home or living space, video surveillance could be considered an invasion of a person’s privacy, involve a lack of respect, and constitute a threat to their dignity and personhood (in treating them like objects). There could also be a risk of voyeurism and using video recordings for criminal purposes. The Royal College of Nursing (2004) and the Mental Welfare Commission for Scotland (2005) have suggested that electronic surveillance should be considered as a form of restraint. On the other hand, Essén (2008), who interviewed 17 seniors found that some perceived electronic surveillance as protecting their privacy as it enabled them to carry on living in their own homes instead of having to move into residential care. Säventedt et al. (2006) distinguish between the use of technology for plain surveillance or support, quoting one of their interviewees who stated:
“It is very important that the person who controls the older person via the electronic device has some kind of connection with them and understands their problems. It cannot be just anybody because then it changes from support of older people to surveillance.” (p.20)
It is therefore necessary to consider who should have access to video recordings, but also how and for how long recordings should be stored and the justification for using such devices. Should, for example, male carers have access to video recordings of female residents in nursing homes or residential care (or female carers of male residents)? This may be particularly relevant for people from certain cultural or religious backgrounds. In cases where special attire is required in public places (e.g. the burkha or the Sikh turban), the boundaries between the private and the public sphere may need to be clarified, especially in residential care settings (bearing in mind the way that each person interprets religious or cultural obligations). For some people with dementia, concerns over the use of surveillance equipment may be dependent to some extent on who is observing them (Robinson et al., 2007).
Also, there should be limits as to where electronic surveillance can be used (e.g. not in the WC or the bathroom). However, the use of AT must be considered on an individual basis as taking the example of the bathroom, the use of video surveillance might give the person more freedom, direct privacy and autonomy whilst they take a bath or shower than they would have if someone needed to be physically present. On the other hand,
perhaps an alternative, less intrusive form of AT could be used which would provide a sufficient level of protection (e.g. from falls, scalding or overflows), enhance self-esteem and promote autonomy.
The home or a person’s own room, in the case of communal living, is a very personal and private domain and people can usually decide whom they want to invite in. As with home care in general, but especially in the case of surveillance technology or tracking devices involving the intervention of other people, the same degree of privacy cannot be ensured. People may feel uneasy or even threatened by this invasion of their personal space and in the case of same-sex relationships, this may result in an undesired “outing”. Heterosexual couples might also prefer to keep their relationship private (e.g. due to ageist attitudes towards sexuality or tensions within the family).
Beneficence/maleficence and justification
Surveillance equipment may be considered as contributing towards beneficence and maleficence. Electronic video equipment, for example, can be used by people with dementia to identify visitors, protect against intruders and perhaps even reduce the likelihood of abuse or substandard care. Some relatives (or even people with dementia) arrange for video cameras (also known as “granny cams”) to be installed in the rooms of people with dementia living in residential care as a means to protect them against abuse (Bharucha et al., 2006). Provided that the person with dementia has consented to this and is currently aware of and in agreement with the use of the equipment, the resulting loss of privacy should not be problematic. However, it should be possible for the person to switch off the camera (or ask for it to be switched off if s/he cannot manage this alone) should s/he want a moment’s privacy (e.g. if s/he has an intimate relationship). The issue of privacy is also relevant to visitors who may feel uneasy about being observed. On the other hand, it has been suggested that the use of such equipment could make it even more difficult to attract and retain good staff due to the invasion of their privacy and fears about wrongful allegations (Bharucha et al., 2006).
Another argument is that constant monitoring might damage the personal bonds between people with dementia and professional carers (NewsMax.com, 2001). Nevertheless, with regard to the principle of justice, if some residents are able to have such surveillance and others not, and if such surveillance is effective, this could increase the likelihood of the abuse or inferior care of those residents who do not have it.
Tracking and tagging devices
The main types of tracking and tagging devices are as follows:
- the direct tracking of a person by means of global positioning systems (known as GPS) which locates a person by satellite (due to an ankle or wrist device, a pendent or a mobile phone) and then transmits details of his/her location via a mobile phone network to a mobile phone, computer or call centre.
- tagging which involves the person with dementia wearing a special device (e.g. on the ankle or wrist) which emits a signal if the person leaves a designated area such as his/her home or garden. This can be combined with a numeric paging device which alerts the carer.
- access control systems (equipment which recognises a chip card and acts on the environment accordingly by locking or unlocking doors, blocking elevators and recording access to certain areas).
- the identification of a trail of locations which indicates where a person has been (known as breadcrumbing)
- the use of infrared technology to detect immobility within the home or that a person has not returned home by a certain time or has left the house at an unusual time such as in the middle of the night.
Uses, benefits and practical problems
Tracking and tagging devices may contribute towards privacy, freedom and autonomy as they may enable people to go somewhere on their own (e.g. for a walk, to the shops or to visit someone) in the secure knowledge that if they get lost, it will be easier for others to find them. This also means that they are not dependent on someone else being available to accompany them and can choose when and where they would like to go. In some cases, a “geofence” may be erected (a virtual perimeter) which limits the freedom of people wearing a tag by emitting a signal if a person goes beyond a certain preset limit. However, this may still be a better alternative to a locked door policy (Bail, 2003).
Studies have shown that people with dementia who get lost are more likely to be permanently admitted to a care home than those who do not, so tracking devices may partly contribute towards the ability to lead an autonomous life (Balestreri et al., 2000; McShane and Skelt, 2009; Phillips and Diwan, 2003).
As the devices can also provide protection by ensuring that a person can be quickly found if they get lost, this can provide reassurance for carers (even if it is never actually necessary to track a particular person).
The above-mentioned benefits may be jeopardized by a number of factors. Such devices need batteries. Carers therefore need to remember to charge the batteries as if they run out, the person with dementia may be at greater risk. The devices should be fairly small and unobtrusive but this means that they can be easily misplaced. With regard to the actual technology used, there are sometimes problems with the accuracy of GPS readings as well as of those of the “geofence” (an additional function which sets a virtual perimeter). These problems can result in a false sense of security for both carers and people with dementia. In the context of residential care, this false sense of security may lead to reduced staffing levels (Welsh et al., 2003). Also, the setting of boundaries reflects the unequal power relationship between staff and residents and in the home setting may lead to a change in power relations between couples and between other members of the family and the person with dementia.
Finally, if tracking and tagging devices are used in settings where there is a shortage of staff or where available staff have a tendency to remain separated from residents and simply watch the recordings or wait for a signal that someone has crossed a barrier in order to react, the people with dementia using this type of AT may come to associate breaching the boundaries available to them with obtaining some kind of human contact (Mental Welfare Commission for Scotland, 2006). This would clearly be counter-productive as it could encourage “wandering” and create tension between residents and staff.
Conflict between autonomy and liberty, and safety/security
As part of his theory of human motivation, Maslow (1943) formulated a hierarchy of needs in which each set of needs must be met before attending to the next set of needs. He claimed that people are preoccupied with ensuring that their basic physiological needs are met before turning their attention to their safety needs and only after that to higher order needs such as love and affection, and self-esteem. Under self-esteem, Maslow included, amongst other things, the need for confidence in the face of the world, independence and freedom.
The use of tracking and tagging involves a conflict between safety/security and autonomy and liberty. Whilst most people are probably in favour of balancing respect for a person’s rights with the perceived need to protect him/her, different groups of people (e.g. relatives and professional carers) may have different opinions on this issue. Opinions may also differ between people from different cultures (Landau et al., 2009).
In a few studies, carers have been reported to have a positive view of tracking and tagging devices but at the same time to be in favour of a greater degree of freedom and respect for the autonomy of the person with dementia (Melillo and Futrell, 1998; Nicolle, 1998; Robinson et al., 2007), although a French study found that 50% of carers were in favour of a substantial amount of surveillance of the person with dementia and 50% against (Rialle et al., 2008).
Health and social care professionals tend to be very much concerned about protecting all their patients and residents from harm and may be influenced by concerns about litigation (Robinson et al., 2007). These concerns may lead to dilemmas for nurses and day centre staff dealing with people with dementia whose freedom of movement cannot legally be restricted (i.e. they are voluntary patients or attend a day care centre on a voluntary basis).
A recent study comparing the attitudes of informal carers and professional carers towards the use of GPS and radio frequency identification (RFID) to track people with dementia highlighted the different attitudes of various groups of people (Landau et al., 2009). Through a statistical analysis procedure known as factor analysis, five factors reflecting types of attitude were identified, namely use for the sake of the patients’ safety, use for caregivers’ peace of mind, respect elders’ autonomy, support restricted use and oppose use. The highest scores were obtained for the factor “use for the sake of the caregivers’ peace of mind” and the lowest score for the factor reflecting objection to the use of the device. Respondents who were older had significantly higher scores for concerns about the caregivers’ peace of mind and the patients’ safety but lower scores for respect for the person’s autonomy. No gender differences were found. When the scores of the two groups were compared it was found that informal carers of community dwelling people with dementia were significantly more in favour of the use of tracking for their own peace of mind and for the safety of the person. Professional carers obtained significantly higher scores for the restricted use of tracking (e.g. in severe cases when there was no suitable alternative) but informal carers were significantly more opposed to its use in general. This last finding contradicts the finding of some of the previously mentioned studies. Based on the scores of the informal carers, Landau et al. (2009) conclude that support for the use of tracking is mainly based on a desire for their own peace of mind (which is similar to the findings of Robinson et al., 2009 and Landau et al., 2010).
On the basis of a literature review, Robinson et al. (2007) concluded that it was not possible to draw conclusions about the perspectives of people with dementia on the use of AT to manage “wandering” as studies focused on carers’ views. In their qualitative study, carried out in 2006, which involved a focus group discussion with 6 people with dementia, the participants spoke about the benefits of walking and getting out which included getting some fresh air, independence, relieving tension, keeping fit and enjoyment. None of them described this as wandering.
Risk can be considered in relation to oneself, to another person or to a larger group of people. For example, if a person leaves a ring on the cooker switched on, he/she may later burn him/herself, someone else might burn themselves or if something inflammable is put on the ring, the whole kitchen might burn down, thereby endangering the lives of other people.
There may be differences in the perceptions of risk of people with dementia, carers and professionals, although most probably consider safety an important issue for people with dementia and some may believe in the necessity to aim for total safety. However, it could be argued that a total absence of risk is impossible and not even desirable. The Mental Welfare Commission for Scotland (2006) suggests that life is never risk-free and that some degree of risk taking is an essential part of good care. People may be more protective of others, than they would be of themselves (Nuffield Council on Bioethics, 2009), particularly in cases where the person being “protected” is considered in some way vulnerable.
Historically, risk was considered as something that could be either good or bad, resulting in loss or gain, but Lupton (1999) claims that it has been transformed into something that is entirely negative. Kemshall (2000) claims that in the context of social and healthcare, which is guided by a managerial discourse, risk is viewed as something that is objective and measurable, and hence can be acted upon although frontline staff might sometimes find the official policy of an organisation inappropriate or unhelpful for specific cases. Others argue that it is socially constructed and value-laden (Lupton, 2005). It must be borne in mind that everyone is different and that people have different perceptions of danger and different assessments of the level of risk they are willing to take. An example of this, not linked to dementia, is smoking which has been proven to be damaging to health but many people with full mental capacity consciously continue smoking and believe it is their right to do so. Imposing one’s perception of risk onto someone else deprives them of their autonomy and freedom, and in some cases may affect their wellbeing.
A person’s position regarding the relative importance of safety and autonomy may depend on whether they are personally responsible for the safety and wellbeing of the person with dementia (Landau et al., 2010):
“When the patients are in the community and the family caregivers feel they have the ultimate responsibility for the patients’ wellbeing, the family caregivers favor the need for safety more than the right to autonomy and privacy. In the study by Robinson et al. (2007), family caregivers claimed that dementia patients in nursing homes were overprotected. Thus, professionals prefer autonomy more than safety when patients are in the community, but safety more than autonomy when under their care in nursing homes.”(Landau et al., 2010, p.415)
However, Landau et al. (2007) also point out that many people with dementia in nursing homes are there because their relatives feel that they are no longer able to assure their safety within the community so the characteristics of the two groups may in some cases be different.
It is also important to consider the definition of “lost”. What constitutes lost might not be the same thing for the person with dementia and his/her carer and this may lead to conflict or to a breach of the person with dementia’s privacy and right to freedom (Hughes, 2008). However, there is a risk of erring on the side of safety and of the automatic presumption that the carer knows best which in some cases would be paternalistic and based on stereotypes of people with dementia lacking capacity and awareness. According to Martin et al. (2010), paternalism aims to protect people from themselves and involves an assumption that their safety is more important than their liberty.
Any potential dangers linked to the use of the device itself must also be considered and communicated to the person or people responsible for consenting to its use. Undesired reactions to the use of implanted RFID tags in animals have been reported such as adverse tissue reaction, migration of the device, electromagnetic interference and even tumours, and as Foster and Jaeger (2008) point out, few humans have been implanted with such devices so data on possible risks are not yet available.
Allocation of responsibilities
Systems designed to monitor or track people and their movements generally involve more than just technological devices as their use is dependent on people who are responsible for the information they provide and aware of the necessity to respect confidentiality. This raises various questions such as who is and should be responsible, how should their behaviour be monitored and controlled and what is the hierarchy of responsibilities? This is not usually inherent in the design as it could be organised in a number of different ways. It also raises the issue of justice mentioned earlier in that it may be presumed that some members of society, such as women, are more available than others. Moreover, informal carers are not always able or willing to take on the responsibility of looking for the person if and when s/he gets lost (McShane et al., 1998). Their consent to becoming involved in the functioning of the system cannot be presumed.
An interesting argument reported by Heeg et al. (2005) against informing people with dementia that a tagging device had been implanted in their shoes was to avoid triggering memories of psychiatry in the third Reich. In the reported case, carers were informed and their consent obtained. This raises the issue of the use of devices which might be perceived as restricting liberty of movement with people with prior experience of deprivation of liberty, humiliation and stigmatization (e.g. through war, incarceration, serious bullying or membership of certain groups). There may also be a perceived injustice of being deprived of liberty as expressed by an elderly veteran (in connection with physical restraint) who stated, “I have done nothing to deserve this. To think you fought a war – now I am a POW” (Sullivan-Marx, 1995, reproduced in Dawkins, 1998, p. 25). These examples also emphasise the importance of bearing in mind the personal history and cultural issues associated with each person.
Concern has been expressed about tagging and tracking devices failing to respect a person’s privacy (Dawkins, 1998; Department of Health, 2001). Two aspects of privacy have been identified: 1. the freedom to escape being observed or accessed when desired, 2. the freedom to escape observing and reacting to others (Essén, 2008; Sidenvall, Fjellstrom and Ek, 1994). This could include avoiding the undesired access by other people to one’s own personal space (Rössler, 2005).
Clearly, tracking devices may prevent people from getting away from others and from having a moment’s privacy, but at the same time may prevent others from encroaching on one’s personal space.
However, in communal living situations, this possible advantage would only occur if there were some prior agreement as to what constitutes one’s personal space and would have to be balanced against other people’s right to freedom of movement.
Dignity and personhood
The use of tagging has been likened to assault, an attack on civil liberties and a form of restraint (Cassidy, 1994; Hughes and Campbell, 2003), particularly when used on a person who is incapable of consent, but some argue that it is nevertheless preferable to physical or chemical restraint which is dehumanising and risky (Bail, 2003; Wrigglesworth, 1996). However, as physical or chemical restraint is rarely justifiable, this is not a convincing argument to override ethical concerns about the use of tagging. Moreover, as pointed out by Hughes (2003), straitjackets were initially considered more humane than shackles but this doesn’t make either acceptable. Even when walking about is considered by others as problematic, there are perhaps other solutions such as modifying the environment or looking for reasons why the person is walking about (Stokes, 2002). Arguing against the use of restraint for people with mental illness, Dawkins states his opinion that “people have unconditional worth and dignity that supports a strong argument for the maintenance of autonomy, even in the event of possible harm from an injury” (Dawkins, 1998, p.26). Such an argument could be applied to the use of AT which may involve a restriction of liberty (in order to protect) or alternatively increased liberty and autonomy (perhaps also involving a slight risk), but each situation could be seen from different perspectives depending on the actors involved.
According to Cahill (2003), tagging should have no place in dementia care as it removes personhood. O’Neill (2003) states, “tagging should be reserved for babies, convicted criminals and animals.” Others would argue that tagging and tracking technology is suitable for use in dementia care provided that it is applied in a way that respects personhood and maintains functional capacity (College of Occupational Therapists, 2005 – in Plastow, 2006; McShane et al., 1994). However, people with dementia may still feel that the use of such devices implies that they are irresponsible and in need of constant surveillance (Landau et al., 2009).
In an earlier study which involved a survey of family and professional carers, only 18% reported concern that the use of tracking or tagging devices would result in a loss of dignity (Nicolle, 1998 in Robinson et al. 2007). However, this is a fairly old study and perceptions may have changed [also need to obtain details of the study to see how representative it was]. According to interpersonal theories of personhood, personhood is maintained through genuine contact, and lack of human contact may lead to social withdrawal, the objectification of the person with dementia and non-respect of the person’s dignity. Consequently, if AT devices led to reductions in staff or reduced levels of interaction with residents in nursing homes, this could adversely affect dignity and personhood (although clearly it is the quality of the contact rather than its quantity that is important).
People who acquire disabilities later life may find the use of AT shameful and stigmatizing (Bjørneby et al., 1999; Brickfield, 1984; Häggblom Kronlöfand Sonn, 1999; Luborsky, 1993 and Zimmer and Chappell, 1999). Particular concerns have been expressed about the possible stigmatizing impact of tagging on people with dementia. Dementia, like a number of other health conditions, is already unfortunately considered a stigma by many people and experienced as such. The use of AT may, in some cases, draw attention to the fact that a person has dementia. In the context of health-related conditions, stigma has been described as follows:
“Stigma is typically a social process, experienced or anticipated, characterized by exclusion, rejection, blame, or devaluation that results from experience or reasonable anticipation of an adverse social judgment about a person or group. The judgment is based on an enduring feature of identity conferred by a health problem or health-related condition, and the judgment is in some essential way medically unwarranted. In addition to its application to the persons or group, the discriminatory social judgment may also be applied to the disease or designated health problem itself with repercussions in social and health policy. Other forms of stigma which results from adverse social judgments about enduring features of identity apart from health-related conditions (e.g. race, ethnicity, sexual preferences) may also affect health; these are also matters of interest that concern questions of health-related stigma.” (Weiss and Ramakrishna, 2004, p. 13)
However, the term stigma does not only refer to the complex social phenomenon described above but also to specific attributes which, due to the meanings attached to them, are considered discrediting and lead to stigmatization (Goffman, 1963; Jones et al., 1984). The attribute (an enduring feature of identity; sometimes but not necessarily a physical or visible mark) serves to identify those people who belong to the out-group (i.e. “them” not “us”). In the case of electronic tagging or even tracking, having the electronic device on one’s person can serve as a stigma. Tagging has been used for newborn infants, criminals, failed asylum seekers and animals (O’Neill, 2003; Carvel, 2005; Corsi, 2008), as well as to prevent the theft of clothes in stores (Counsel and Care, 1993). Marr (1989) and Welsh et al. (2003) suggest that the same stigma linked to the tagging of people within the penal system could be extended to people with dementia.
An additional link to criminality can be found in the origins of the term “stigma” which date back to ancient Greece where people were physically marked by burning or cutting as a visible sign to others that there was something bad or unusual about their moral status (Goffman, 1963). It was a sign of disgrace and/or a signal to other members of society that the bearer was in some way flawed or deviant, a kind of lesser person. In most cases, this kind of treatment was reserved for slaves, criminals or traitors. The marking of human beings in this way involves an element of dehumanisation and objectification.
Consequently, the electronic tagging of people with dementia can be stigmatizing as the devices serve as a sign to other people of a potentially discrediting difference and also due to the association with criminality. If the device is obtrusive, the person wearing or carrying it may feel infantilised or incompetent, or it may draw attention to their medical condition. Even if the tagging device cannot be seen, the consequences of wearing it may become apparent if ever the alarm is activated as a result of crossing a virtual geographical barrier. This is similar to the use of chair and sensor pads in communal settings where the signal may result in a person being regarded with shock or disapproval and being labelled as “the one making all the noise” (Morgan, 2003).
The issue of visibility/concealability fits in with Goffman’s distinction between being discredited on the basis of a stigma and being discreditable. The former describes the situation whereby the stigma is known about (e.g. everyone can see the device and knows what it is) whereas with the latter, the stigma is not immediately apparent (or at least the person does not think that it is) but risks becoming apparent (e.g. by crossing a boundary and hearing an alarm or being brought back). According to Corsi (2008), an implantable chip is marketed in the United States for use with people with chronic diseases including Alzheimer’s disease. Niemeijer and Hertogh (2008) suggest that the use of implantable radio frequency identification technology (RFID) may actually be less stigmatizing to the wearer than a bracelet as it is not visible. However, the person with the implanted chip is likely to eventually forget that he/she has it and from that point on would not be aware that he/she was being tracked (). In Germany, 23% of about 1000 respondents taking part in a survey organised by a lobby group BIKOM stated that they would be willing to have a chip inserted under their skin “for certain benefits” but 72% were completely opposed to having any electronics in their body (The Local, 2010).
However, the actual stigma (in the sense of the identifying mark) is rarely the real root of the problem as it depends on the meanings attributed to it. Not everyone interprets tagging and tracking in the same way and some people may be in favour of using such devices for themselves for various reasons and even express this in advance directives. Moreover, meanings are culturally constructed and can therefore change.
The meanings that people attribute to electronic tagging have not been systematically evaluated but there have been a couple of small-scale qualitative studies which involved asking people about their perceptions of tagging. In a small-scale telephone survey of carers and a feasibility study involving 24 people with dementia, when asked what tagging reminded them of, several said the tagging of criminals (Hughes and Campbell, 2003). A couple of other people made references to being on a lead and wearing a cow-bell. Further information is needed to determine how people with dementia feel about electronic surveillance, tracking and tagging, and also to see how this relates to the views of carers and healthcare professionals.
If electronic tagging becomes more common for different groups of people (e.g. people with dementia and infants), if its use and design is discussed with all actors concerned and if it is presented in a positive light by the media, negative associations with criminality might gradually be reduced. “Universal design” (Mace, 1985), sometimes referred to as “inclusive design”, involves trying to design products and environments which can be used by “all people, to the greatest extent possible, without the need for adaptation or specialised design” (Connell et al., 1997). Perry, Beyer and Holm (2009) suggest that designing AT according to the principle of universal design and paying attention to the way things look will reduce the likelihood of the item or system being stigmatizing. This might be possible in some cases but it may prove difficult to design certain devices which could be used by older users whilst remaining attractive to younger or more experienced users (Hawthorn, 2003). Wallace et al. (2010) question whether universal design is always appropriate and even desirable.
Mace (1998) criticized the lack of attention paid to aesthetics in the design of AT but this is perhaps gradually changing. With regard to disability, this might include ramp access to buildings (not as an alternative but as the only access) or large, easy to grip utensils with attractive handles which could be mass produced and not marketed as utensils for disabled people. The choice of AT could still be tailored to the individual needs of anyone using them.
Access control systems and breadcrumbing
With access control systems, access to designated areas is controlled automatically. If a person has a chip card which grants access to a particular area, it will be detected and the door unlocked or the lift activated. The equipment can also be used to record the access of each person carrying the chip card. Margo-Cattin and Nygård (2006) suggest that such technology promotes privacy, protection of property and a sense of security in that residents realize that access to their private living space is strictly controlled. They also point out that the automatic locking and unlocking mechanisms of doors may help individual residents find their way to their own rooms by limiting the number of wrong options, thereby promoting autonomy and leading to a sense of accomplishment.
One possible drawback to the access control systems is that it would become clear that different residents had different levels of access to specific areas other than their living space, such as balconies, gardens and kitchens. This could be used as a form of social control or punishment. Even if used fairly and with respect, some residents could feel awkward about being publicly denied access to certain areas, especially if they do not understand the reasons for the restriction, and this would not promote their wellbeing. This requires sensitive management of this type of AT so as to minimize the possibility of upsetting residents and maximise potential benefits to residents of such technology linked to freedom of movement, autonomy and wellbeing.
Finally, “breadcrumbing” and the use of infrared technology could be interpreted as an invasion of personal privacy if the person is not aware of its use. Non-authorized use of such equipment would amount to spying on someone. Care must also be taken to ensure that the person fully understands what they are agreeing to. The devices should be explained in terms that are easy to understand bearing in mind that potential users might not have a particularly good understanding of technical matters but not over-simplified so as to hide the full extent of the possible functions and the implications of using the device. Also, it should be possible for the person with dementia to know in advance whom to ask for the device to be removed and how much this would cost.
- In Chapter 3 we have examined the ethical issues linked to the use of assistive technology for and by people with dementia. We have drawn attention to the positive impact that AT can have on people’s lives as well as some potential dangers or drawbacks which can hopefully be avoided or minimised through increased awareness and communication as well as through careful planning and monitoring. In the next section, we will provide practical guidelines on the ethical use of AT by and for people with dementia.
 The German State from 1933 to 1945
 Prisoner of war
Last Updated: Monday 23 April 2012