In the previous section, I argued that it is sometimes ethically justified to influence persons with dementia in order to overcome the ‘no’ to conventional caring measures offered in home health care and social care. I also discussed a number of methods for how to proceed. I will now investigate to what extent my proposals hold also for the use of assistive technologies in this type of care.
Reasons for resistiveness towards assistive technologies
Let us start with the issue why persons with dementia may say ‘no’ to assistive technologies. Partly, they may do so for the same reasons as those mentioned above regarding conventional caring measures, for example, problems of ingesting information, a reaction to elderspeak or feelings of intrusion of privacy. However, when it comes to assistive technologies, there may be also other reasons for saying ‘no’.
One special reason may be reduced task-specific competence regarding particular assistive technologies (Perry et al.
2009; Ganyo et al.
2011). Persons with dementia may say ‘no’ because they do not understand how the technology works (at a layperson’s level of understanding) and how it will affect their daily living. They may have special difficulties in understanding how to use the technology. Regarding some technical devices it may be necessary to do something, for example press a button on a mobile safety alarm. However, regarding some other technologies they need not to do anything for the technology to work. An example is fall sensors.
Another reason is that persons with dementia may be particularly worried about assistive technologies, since they have not met this technology before. Persons with dementia may have difficulties of coping with new things in general, but unfamiliar technologies might cause particular anxiety.
A third reason is due to the fact that assistive technologies are quite controversial in society in contrast to conventional caring measures. Some persons with dementia might have been very critical towards assistive technologies—or towards technology in general—prior to developing dementia and continue to be critical also when they have developed this disorder.
Challenges in using assistive technologies for persons with dementia
Why use assistive technologies for persons with dementia? The justification for a large-scale introduction of such technologies for an ageing population in general is commonly stated to be care for the health and quality of life of the patients. By using these technologies it could be possible for elderly people to live at home longer and avoid, or at least postpone, the need to move to a nursing home. By devices for monitoring heart conditions or diabetes attached to the body or implanted into the body the number of hospital visits and hospitalisations could be reduced. Instant information from fall detectors could make it possible for care professionals to help persons in fall accidents quicker than otherwise. Getting lost when taking a walk outdoors could be avoided by mobile safety alarms with GPS positioning. The Internet could help elderly persons to stay in touch with their children and friends but also with care professionals (Nordgren
2013).
However, driving forces behind the development of these technologies are not only concerns for health and quality of life but also technological ambitions, commercial opportunities and the wish among high-level decision-makers for cost-effectiveness in the use of limited health care resources (OECD Health Policy Studies
2010). This raises the issue to what extent this development truly is in the best interest of patients with dementia (Gordijn and ten Have
2016; Novitzky et al.
2015). At the very least these driving forces are contextual factors to take into consideration when assessing the ethical justification of using the technologies.
With this in mind, it becomes particularly important to investigate the point of using assistive technologies for persons with dementia, especially if some of them say ‘no’ to using them. Why should care professionals influence persons with dementia to use these technologies? To what extent can these technologies be beneficial and to what extent can they be harmful? Let me give two examples of special importance, one example of a potential benefit and one of a potential harm.
A potential benefit is related to the special importance of being able to continue to live at home when you are a person with dementia. Above I referred to Agich’s realistic conception of autonomy, ‘actual autonomy’. On this conception, autonomy concerns retaining the individual’s sense of identity rather than aiming for independence and non-interference (Agich
1990). Now, home is the place where the person’s sense of identity is likely to be best retained (for other aspects of the value of home for persons with dementia, see Dekkers
2011). The close relationship of home and identity has been pointed out by Chaudhury and Rowles:
It is now widely accepted that home provides a sense of identity, a locus of security, and a point of centering and orientation in relation to a chaotic world beyond the threshold (Chaudhury and Rowles
2005, p. 3)
But living at home as a person with dementia—rather than moving to a nursing home—may require assistance by health care and social care professionals. However, given the limited resources of health care and social care, care professionals cannot be present around the clock, and this might not be what the person with dementia wants, either. So, assistive technologies might be useful supplements to conventional care by making it possible for persons with dementia to continue to live at home (Nuffield Council of Bioethics
2009, pp. 97–99; Smebye et al.
2016).
A potential harm of assistive technologies is related to the special need of many persons with dementia to experience personal contact. As Agich points out:
Elders must be treated as individuals, as unique persons with identifiable personal histories so far this is possible. Even when such identifications are difficult to assess, as in cases of severe memory deficits associated with Alzheimer’s disease, patients frequently respond, albeit minimally and in deficient ways, to direct contact with caregivers and others (Agich
1990, p. 16–17).
This need for direct personal contact also among persons with severe dementia speaks against reducing the number of face-to-face meetings with care professionals by remote monitoring technologies for reasons of cost-effectiveness. Cost-effectiveness is certainly ethically relevant at a policy-making level. Assistive technologies are expected to reduce costs, for example by reducing the number of visits to general practitioners and health care centres, reducing the number of hospitalisations and reducing the time for hospitalisations (Finkelstein et al.
2006; OECD Health Policy Studies
2010). However, at the level of care for individual patients individual needs must be given priority. For many elderly persons the need for personal contact with care professionals is of vital importance. For some patients face-to-face meetings with care professionals may be their only opportunity for personal contact, since all their friends have already died. Assistive technologies should be considered supplements to personal meetings with care professionals rather than substitutes (Nordgren
2014). Persons with dementia should not be pressed to use technologies for reasons unrelated to their particular individual needs.
So, assistive technologies may support the wish of persons with dementia to retain a sense of identity by living at home rather than moving to a nursing home. However, they may also be ethically problematic when used to replace personal meetings with care professionals by reference to cost-effectiveness. In making decisions on whether or not to use assistive technologies for persons with dementia, this potential benefit and this potential harm should be taken into serious consideration.
Accept or influence?
Given these challenges, should care professionals accept the ‘no’ of persons with dementia to assistive technologies or should they influence them in order to overcome the ‘no’? As in the case of conventional caring measures, the default option should be to accept the ‘no’. However, while in the case of conventional caring measures—such as taking medication, eating or having a shower—it might at some point become justified to influence the person, this is not to the same extent the case regarding assistive technologies. There are at least two reasons for this.
One reason is that in contrast to conventional caring measures assistive technologies are commonly not essential for survival, health or hygiene, but merely potentially beneficial supplements. They may make it possible for persons with dementia to continue to live at home for a longer time rather than moving to a nursing home. In this regard fall detectors, mobile safety alarms and Internet for social contact could be useful. But commonly assistive technologies are not essential for health in the way conventional caring measures are. However, there are exceptions. An example is the traditional safety alarm for indoor use that a person wears around the neck or wrist. In case of a fall the person may press a button on the alarm and avoid serious harm by getting help quickly.
Another reason for being more restrictive in exerting pressure regarding assistive technologies than regarding conventional caring measures has to do with the economic context. To the extent assistive technologies are not essential for survival, health or hygiene but merely potentially beneficial supplements, it becomes particularly problematic to exert pressure if the technological devices are to be paid for by the persons with dementia themselves (or their families). This would hardly be in line with respecting the autonomy of these persons. However, if the devices are to be paid for by public health services or community services (perhaps at a small fee) it might be acceptable to exert some pressure in order to overcome the ‘no’, although it is vital that the assistive technologies are assessed to be truly beneficial supplements for the persons with dementia and not used as substitutes for personal encounters with care professionals.
With this in mind, care professionals should generally be more restrictive in influencing persons with dementia regarding assistive technologies than regarding conventional caring measures. This does not preclude that in some cases some pressure can be exerted also regarding assistive technologies.
When to use the methods
Now, the question arises to what extent it is ethically justified to use these methods of influence. In order to discuss this issue in a way that takes seriously possible ethically relevant differences among assistive technologies, let us take a closer look at the three technologies referred to as examples in the list: fall detectors, mobile safety alarms and the Internet.
It is common that persons with dementia fall frequently. By using fall detectors that instantly transmit the information to the care professionals, the person with dementia may get help more rapidly than otherwise. Moreover, some harm due to prolonged undetected fall accidents may be prevented, for example hypothermia and dehydration. So, there seem to be good reasons to influence persons with dementia to have fall detectors installed in their homes. Two types of fall detectors exist, namely fall sensors—for example floor sensors or motion sensors—and video monitoring (Ganyo et al.
2011). The former might seem less privacy intrusive than the latter. They just register, for example, that the person with dementia has fallen from the bed to the floor and transmit this information to care professionals. Video monitoring, on the other hand, may register in detail what the person looks like and also everything else that the person does in addition to falling. However, to the extent the picture in made less detailed, for example by blurring it, also video monitoring might be acceptable from a privacy point of view. Since fall detectors can be truly beneficial the first four methods of influence could be used and probably also methods 5 and 6. In some cases where the persons with dementia fall very frequently it might even be justified to use methods 7 and 8. What may make decisions about exerting pressure difficult concerning fall detectors is that there often exists a good alternative in terms of traditional safety alarms. However, in cases of severe dementia the persons may not have capacity to press the button on the alarm. In those cases fall detectors can be essential for health. Decisions on these issues need to be based on case-by-case assessments.
Mobile safety alarms with GPS positioning make it possible for persons with dementia to walk outdoors on their own (Landau et al.
2011; Landau and Werner
2012). This is certainly perceived by many to be of great value. If the persons do not find their way home they can press a button on the device and care professionals can track them via the GPS system. In trying to influence persons with dementia to use this device the first four methods—and possibly also methods 5 and 6—could be used. However, if persons with dementia still do not want to use GPS devices, would it under any circumstances be ethically justified to use deception (method 7) or coercion (method 8)? In cases where persons with dementia have a dangerous tendency to just leave home without anyone knowing where they go and they often get lost, an option could be to hide GPS devices in their clothes or shoes without informing them. However, I doubt that such deceptive or coerced GPS tagging could be justified. There seems to exist a good alternative, namely that they are assisted in their outdoor walking by care professionals or relatives. However, decisions on these matters can be very delicate and require a balancing from case to case.
In discussing mobile safety alarms let me also mention one more technical option, namely to add geographic fencing to the alarm. This technology could be even more problematic from an ethical point of view than ordinary mobile safety alarms. Geographic fencing means that if persons with dementia walk outside a predetermined geographical area, care professionals or close family members will be informed. This might be beneficial in cases where persons with dementia have a strong tendency to have problems finding their way home after a walk. However, geographic fencing might be perceived as privacy intrusive by the person with dementia, since if the person walks outside the geographic fence, for example to the pub, care professionals or close family members would know and the person might not want that. This could be a reason to not influence the person by deception or coercion to use such a technology.
Social contact via the Internet can be of great value for persons with dementia who feel lonely (Cotten et al.
2013). The contact can take place via an ordinary computer screen, but also via a bigger screen covering part of the wall, creating a feeling of being almost present in the homes of children or grandchildren. Other devices are communication robots (a kind of “Skype on wheels”) following persons with dementia when they walk around in their apartment or house. Social contact can slow down the process of dementia, and the Internet could be very useful in this regard. However, these devices require active participation by the persons with dementia. There can be no meaningful social contact via the Internet if they do not want to communicate. So, using the first five methods could be justified. Appeal to authority (method 6) will probably not work, since a positive attitude is necessary for true communication, and feeling pressure from an authority like a doctor might not promote such a positive attitude. For the same reason coercion (method 8) will probably not work, either. True communication cannot be based on coercion. Deception (method 7) is non-applicable, since care professionals cannot deceive a person with dementia to communicate via the Internet.
In the list of methods of influence I didn’t give any examples regarding robots. The reason is that robots are still to a large extent something for the future. There are different kinds of robots. I have already mentioned communication robots. Other types are companion robots, such as robot seals or robot cats, and robots that assist the person with dementia in eating or finding the way in the house (Sharkey and Sharkey
2012; Sorell and Draper
2014). However, robots might be problematic for persons with dementia in other ways than the other technical devices. Robots may cause anxiety because persons with dementia may not understand their true nature, i.e. that they are merely complicated machines. To the extent an assistive robot is considered to be in the best interest of a person with dementia the first four methods of influence—and maybe even methods 5 and 6—might be used. Deception (method 7) would not work, at least not for the near future, since the robot prototypes developed so far are not similar enough to human beings in their looks and behaviour. However, when they become similar enough, deceiving persons with dementia would still hardy be ethically justified, because there exists a better alternative, namely to provide more assistance by care professionals. For the same reason coercion (method 8) should probably not be used. Care professionals should avoid deception and coercion, because robots seem neither essential for survival, health or hygiene, nor beneficial enough supplements to conventional caring measures for these methods to be justified.