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Support for people with Alzheimer's

The subject of ethics has been described as the study of morality; in other words, a system of rules and principles that guide the conduct of people, and the way that these rules are then evaluated as standards as society changes. Factors that cause change can be religious or secular debate by elected representatives (e.g. Parliament) or external causes such as new inventions or procedures that create dilemmas that we haven’t previously needed to consider.

When technology was first being considered seriously as a means of enabling people challenged by cognitive impairments to continue to live in their own familiar surroundings, there were few existing rules that could be applied. Indeed, sufferers were often seen as patients and, as such, were subject to a medical model of care which often dictated that they had to be put into a place of safety “for their own good”. This was typical of the risk aversion practised at the time, and which denied sufferers choice and the basic right to choose where they might live out their final days.

The EU-funded Astrid project challenged this position and led to 4 basic principles which have generally been accepted by all parties. These are:

1. Autonomy: people should be able to decide what they want to happen to them whenever this is possible. This should lead to people being able to live full lives in much the same way as they did before, which may be more about promoting continuity of the status quo rather than about making decisions about change. Thus, any new suggestions or proposals should involve opportunities for discussion and for informed consent to be provided. Such consent needs to be voluntary, and it must be ensured that the recipient of the technology (or technological service) has the competence to understand the proposal or intervention and its potential effects. Clearly, there needs to be sufficient information, and of a succinct and lucid nature, that any and all concerns can be addressed. Informal carers and/or family members may need to help/guide this process, especially if the proposals involve them taking a bigger or smaller role in the care process in the future. Total honesty about changes in time and responsibility is essential if the process is to become successful.

2. Benificence: society and all agencies responsible for providing or commissioning care should be aiming to do their best for the people being offered a service. It mustn’t be the simplest or the lowest cost option. They must generally balance the tolerance of the risks that they (and others) will have identified with their natural fear of creating an unmanaged risk. There will be potential for many dilemmas and differences of opinion between giving the service user the opportunity to improve their choices and their Quality of Life, and the natural instincts of many to protect and preserve safety through removal of independence. This is why so many people are “put” into care when relatives feel that they are right to protect rather than empower someone with dementia. Fortunately, this protectionist, risk-averse view is one from the past as far as agencies are concerned - but many families members may still feel this way.

3. Non - Maleficence: practically, society, care agencies and other interested parties need to strive to ensure that they don’t harm the people in their care by offering too much independence without the benefit of the control systems which would allow the risks to be managed. A fine balance needs to be sought between avoiding harm (and the potential for harming others too) whilst respecting clear decisions, individual dignity, integrity and preferences. Telecare is potentially one of the most powerful means of ensuring that this balance is right because, through its sensors and alarm infrastructure, it can provide a reasonable and robust approach to managing risk through the early detection of a problem, and by having a robust and rapid response arrangement in place, together with escalation procedures. In that sense, the technology is the facilitator of something bigger and stronger i.e. the full service of which it is a component part. It may be helpful therefore not to think always of an item of technology in isolation, but as a cog in a much bigger machine.

4. Justice: people should be treated fairly and equally irrespective of their race, beliefs or level of education and articulation. This seems to be a reasonable, position for people to accept until they need to define what rational decisions actually are, and the rights of the individual to do some silly things at some stage in their lives. The new Mental Capacity Act refers to people making “eccentric or unwise decisions” but it doesn’t say that society should immediately stop people from making such decisions. Many younger people go through a mid-life crisis and can abandon family, friends and former values in search of something different. Counselling can avoid a catastrophe, but for those who continue down an apparent path of stupidity and self-destruction, society cannot intervene because that person firmly believes that the actions are logical and appropriate, and that they have full capacity. Subsequently, they may see things differently, but society has no place to judge. So in cases of dementia, many decisions on issues of support, care, use of money, desire to travel around the world, may seem absurd but should not (and cannot) be controlled by family and friends simply because they don’t like it. Everyone has rights, and that includes a right to be heard, and a right to do things as they would wish if that remains a possibility. Justice to the individual goes beyond managing risks and into areas of civil liberties and human rights. Frankly, life would be a bore if we were prevented from taking any physical risks. The emotional risks of boredom, social isolation and lack of fulfilment need to be factored into the equation. Against this, the new changes to the Mental Health Act are an extension of the powers which already allow people whose mental illness makes them a threat to themselves or others to be detained and, if necessary, forcibly treated. Some people have been termed "revolving door patients", as once allowed home, they stop taking their medication, and their symptoms worsen again. Once someone detained under the act is sent home, they can be subject to "supervised community treatment".

While they cannot be forcibly treated in their own homes, if they do not comply with the recommended treatment, they can be recalled to hospital immediately without the need for a fresh order under the act.

Practical Interventions

Neither telecare nor any other service should be the subject of a specific assessment of need. A person-centred approach should start with identifying those unmet needs, and the existing risks to the individual’s safety, their social interactions, as well as to their neighbours, relatives, friends and informal carers. Technology solutions are rarely the answer on their own, but they do give an opportunity for existing support services provided by family and friends to be supported and extended. There is considerable evidence to show that telecare and technology work best when they are working with the individual and with their existing support networks.

A simple example of this would involve the management of a device such as a reminder alarm. This only works if it is programmed correctly and if it is worn or carried on the person at the appropriate times. Clearly, knowledge of the medication regime would be needed, but also some deeper understanding of how the device might be carried, whether in a handbag, in a pocket or attached to the body in some way. It may be implied that the reminder will only work satisfactorily if one or more people take responsibility for ensuring that the device, the memory and the batteries are managed appropriately.

The type of information required for this approach is hardly likely to be in any standard assessment process or written procedures. Indeed, most of the standard processes employed by local authorities and primary care organisations involve finding out information in a crisis situation, often on a hospital ward and discharge is imminent. Not only might the patient then be suffering from delirium as a result of dehydration, high temperature, infection, elevated blood sugar levels or a host of other problems (including fear), but they will be trying to function outside their known environment. This will necessarily cause confusion and may lead to false conclusions because it will not factor in the coping mechanisms that we all develop and adapt on a day to day basis at home in response to changing circumstances.

The significance of performing a full assessment in the familiar surroundings of the person’s own home cannot therefore be overemphasised. It should not be based simply on how they manage in the main living rooms (such as kitchen, lounge and bathroom) but on their performance elsewhere in the house for example the conservatory if tending to plants is an important part of their lives. If they can remember to water their plants and flowers on a daily basis, then they may have developed a good procedural memory which enables them to self-medicate, to eat, to wash themselves and to go to bed at regular times. The fact that they might struggle to remember dates, people’s names and appointments should not in itself mean that they can’t look after themselves if provided with the right level of support.

One of the biggest challenges becomes one of identifying when and how the individual struggles, and if this can become a serious risk. It is often impossible to make such judgements as a snapshot in times, simply because people with dementia have good days and bad days (as do we all) and their condition may also vary significantly during the course of the day. In particular, if they concentrate their efforts during the morning on building up an impression that they can cope with routine events, the strain may increase their lack of insight for actions required during the afternoon. Thus, longer term monitoring may be needed to obtain a more balanced view of what the problems might be, as simple non-technological options may be available in the first instance when the actual activities performed are known. The significance of full activity monitoring, rather than simply monitoring total energy expended or the pattern of movements, may be apparent. Only then can behaviour be analysed and interpreted in terms of need. In the same way, non verbal communication may be used to put into context the events that full activity monitoring might reveal.

Ethical Conflicts and Dilemmas

The starting position must be that technology is seen as part of an overall package of care that can enhance it in some way, either by being available on a 24/7 basis, or by having eyes and ears that are sensitive to specific risks, that human carers cannot do. Twenty years ago, it was felt that the personal touch was the only thing that mattered, and that people were always better than inanimate objects. Today, we recognise the importance of person centred care, of choice and of dignity. Who would dream of arguing in favour of night staff performing physical nightly checks to make sure that residents were dry? Yet, this is what has been happening for decades. Isn’t it more dignified (for individuals and for staff) to have technology alert the individual that they are wet? Only if they are unable to do anything about it, an alert is raised with a carer. The technology for this is simple; it costs little and benefits everyone - so there is no dilemma and no ethical conflict.

More generally, we must accept that hands-on carers are compassionate people who continue to provide hour upon hour of support, often without thanks, in the sure knowledge that they are a necessary help. They are unlikely to be aware of any new technologies that might decrease their burden; some might even not consider the idea of telecare from a fear of technology or through some belief that sharing a burden with a machine in some way diminishes their love for the individual being carer for. In an era of gene therapy and stem cell treatment would anyone deny the opportunity of a possible cure for a degenerative disease or for sight for the blind because it reduces the love of their families for them? There will always be doubters, and not all of them will be the modern day equivalent of luddites. Their fears could be as simple as the technology may not work, and this could bring disappointment. This is not a logical argument provided that everyone is realistic and recognises that there is no such thing as a cure-all. Thus, there is again no ethical dilemma as long as there is sufficient information available for the public, and sufficient training available for staff. This includes up-to-date knowledge of what works (and what doesn’t work) and a simple but robust process of matching technology to need and risk i.e. the skills of prescription rather than assessment. It also encourages the need for a technology toolkit from which different things can be tried when a situation arises where there is no standard answer. Having simple mechanical interventions to offer before the complex technologies is part of this approach.

Ultimately, the main ethical questions are likely to be:
1) What is the purpose of the technology being introduced?
2) Who benefits from the use of the technology? and
3) Would the same technology be offered if the recipient was young and cognitively impaired rather than old (and cognitively impaired)?

The third of these questions effectively considers a possible ageist approach to assessment. Assuming that the rights of older people are fully considered then there should be no issues, though it may be necessary to readdress ageism in the context of increasing numbers of people suffering from early onset dementia alongside an explosion in the number of people aged over 80, or over 90, who suffer from the disease.

The first question ensures that technology is not considered as an experiment. Provided that technology lies within the toolbox of care options being considered, then its place is appropriate. When this question can be answered honestly and appropriately, then the explanation that follows can also remove any doubts regarding its role in a particular case. A dilemma can arise if the individual being offered the technology lacks the capacity or insight to understand why they need a technology as they might simply deny that any problem exists. Thus, the degree of involvement of the individual will necessarily vary according to the circumstances. Assessing capabilities can be a very subtle process in people with dementia because activities need to be separated into a sequence of events in order to identify which part of the sequence gives rise to the problem. When there is doubt over the individual’s ability to understand the purpose of telecare, then the involvement of other groups including relatives, friends and other professional housing, social care and housing staff need to be considered. They may well know the individual, his or her wishes and beliefs more than anyone else, and be best placed to judge the impact of a technology on that individual and their quality of life.

The above discussion provides a good starting point for considering who will actually benefit from the technology or, indeed, the service that surrounds it. Cognitive impairments can affect many different stakeholders. Whilst the individual must be central to the discussion, it would be wrong to neglect the effects of dementia on informal carers, the caring professions, neighbours and landlords. A person who forgets to switch off taps, whether it’s water in the bathroom or gas in the kitchen, can compromise the safety of that person’s property but also the adjoining ones. Someone who goes out at night and wanders away from home, may risk their own well-being, but puts great stress on family members and on the emergency services who may need to go out to look for that person during inclement weather.

The need for holistic assessment is evident, so the choice of telecare should take into account the needs of ALL the stakeholders. The individual needs an explanation of what the equipment does and must agree to give it a try and, following a certain period of use, agree to its utilisation over a longer term. This may involve the views of family members and attempts to balance conflicts or tensions between different stakeholders or even family members. A clear process is required which will consider how and when equipment is installed, reviewed and, if necessary, removed. A good telecare service will already have these steps in place. Reassurances will also need to be provided concerning the ownership of data, where it resides and how access will be restricted to those professionals who might need access to it. This may include the family members but, in certain cases, might not unless they have agreed to provide a response to a specified emergency situation.

New Technologies and Dilemmas

Any list of future telecare devices or systems will soon be out-of-date because of the rapid state of advance in home technologies. It is therefore important to have in place an ethical framework which is agnostic to the type of technology. Thus, its principles can be applied whenever or however new devices appear. However, to illustrate the potential for dilemmas posed by new technologies, we conclude with a few examples:

1. Continuous assessment of activities- movement detectors in all rooms and external doors can provide information on the level of mobility, and of room occupancy, which can be useful to determine poor sleeping patterns and a tendency to go out late at night. More advanced systems can provide specific information on activities performed enabling better assessments to be performed with options for detecting abnormal behaviour or trends in performance. Some data collected may be considered sensitive and may need to be justified on a parameter by parameter basis. Hence, the elements selected for activity detection should be subject to the same ethical considerations as the technology itself.

2. Tracking and location devices- satellite navigation systems facilitate the tracking of devices that are small enough to be worn on the wrist, kept in handbags, on key-rings or in pockets of clothing. More advanced systems allow geo-fencing, enabling alerts to be generated whenever the device moves outside a safe zone. Whilst the technology can undoubtedly reduce the stress on family carers, enabling people who are lost to be located quickly day or night, the price paid is a limitation on liberty. Although electronic detection must be infinitely better than a locked doors policy, decisions must be made on the size of the safe zone, the times when alerts are active, and the response to situations considered to be dangerous. As always, the involvement of the user is paramount if the technology is to be acceptable, and the roll of informal carers in managing the system (especially the battery and the wearing) is crucial for success.

3. Intelligent camera systems- cameras that track people on streets and in shopping centres have become synonymous with surveillance and are a necessary part of a society which needs protection. However, the level of surveillance needed is subject to considerable debate and, as the cost of digital cameras and associated data transmission systems have fallen, is no longer governed by cost. In some cultures, the idea of being viewed through cameras in the home is perfectly acceptable. Elsewhere, individuals would never wish for be seen during private moments, especially by unseen people at a distance. Yet, nurseries install cameras connected to the internet to allow parents to see their children, so why shouldn’t children see their parents 50 years later? Perhaps the best approach is to provide 2 way visual communication and only of a quality sufficiently good to show normal activity, and hence a safe environment. This is, in effect, a virtual frosted window, and should provide a level of surveillance which people already accept for their bathrooms.

4. Virtual presence - broadband communications, computer generated graphics, avatars, holograms; they are all examples of technologies that can be presented remotely to an individual as illusions of reality. This software is used in dozens of computer games and on various games consoles. This would allow a technology user into believing that they were speaking with someone who only exists in silicon, irrespective of what they say or what they look like. They might resemble a loved one who died many years ago, and who could persuade the service user to engage in long and intimate conversations. A computer carer would never tire, would never run out of things to say, and would never mind repeated conversations. It would benefit the user, benefit the service provider and benefit society - but only clear limits were set on the relevant parameters.

Conclusions

A good ethical approach to the provision of technology to vulnerable people to support their care plan involves ensuring that the appropriate information has been provided to the individual and to other stake-holders from the beginning. It is perhaps too simple to state that the purpose of the technology must justify its use because people with a dementia do not always appreciate their lack of reasoning, their lack of insight and their poor short term memory. This lack of capacity might prevent them being able to make choices unless a robust ethical framework was already in place to help in ensuring that technology provision was appropriate, necessary and for their benefit.

In this way, a good telecare service can be prepared for any new technologies, and will be able to quickly adopt best practice in the sure knowledge that ethical issues have already been addressed.