An ethical framework for making decisions linked to the use of AT
The ethical issues linked to the use of assistive technology in dementia care
In Chapter 2, we examined some of the main ethical principles and in Chapter 3, we explored the possible ethical implications of using various types of AT. As time goes by, these implications are likely to change as people change and are influenced by the values and practices within society at any given moment in time (e.g. by education, politics, religion, the economy and culture). In this Chapter, we propose a framework for decision making. A few techniques to help clarify ideas as well as a flowchart of the ethical decision-making process can be found in Annex 2.
An ethical framework for decision making
Whilst philosophers have provided in-depth analyses of the ethical principles underlying various moral and ethical issues, when it comes to making decisions in concrete situations, which are sometimes messy, confusing and involving competing principles, it is clear that trying to balance these principles is not an easy task and can lead to ethical dilemmas. Having provided concrete guidelines and recommendations aimed at highlighting some of the key issues linked to making ethical decisions about the use of AT, we would like to propose an ethical framework to guide such reflection and concrete decision making.
Understanding dementia as a disability
In Chapter 1, we looked at different ways of understanding dementia. We emphasised that it is not just about plaques and tangles in the brain but that factors such as personal history, coping skills, relationships with other people and one’s own personality are equally important. An important part of this holistic perception of dementia is recognising that people with dementia have impairments and that these impairments often result in disability. Disability is not limited to people with physical impairments.
Recognition of dementia as a disability (or potential disability) is essential and the first step towards ensuring the appropriate design of AT to be used by or for people with dementia, but also towards ensuring that people with dementia have access to it when it would be of most benefit to them. For some people, recognising dementia as a disability may involve changing their perception of dementia or of disability.
Not losing sight of the person
People with dementia are our relatives, friends, neighbours and in some cases even work colleagues. They are also citizens, who will have contributed towards society in different ways for many years and may still be able to do so.
As the disease progresses, people with dementia may find it increasingly difficult to communicate their thoughts, feelings, ideas and emotions but they still have them. In such cases, the responsibility for initiating and maintaining contact may have to gradually shift to other people. This may involve adapting the way one communicates and being more attentive to non-verbal communication. At times, people may feel that they can no longer get through to the person with dementia (especially in the case of more advanced dementia) but the person is still there, still a valuable human being and perhaps, more than ever, still in need of human contact. It is essential to recognise the person with dementia as a person irrespective of the stage of the disease.
Difficulties communicating, time constraints, stereotypes and lack of knowledge about dementia may lead to the exclusion of people with dementia in discussions about the use of AT. If one overlooks or fails to recognise the uniqueness of each person, there is a risk that they will come to be considered as an object, a kind of generalized person with dementia. There is no single solution for everyone with dementia as their individual situation, personality, environment and condition are different. The same AT device or system may be enabling, useful, useless or irritating depending on the person using it or for whom it is used. It is therefore important to recognise the uniqueness of each person with dementia.
Being aware of ethical issues and dilemmas
Whilst it would perhaps be incorrect to say that there is never a right or wrong answer to ethical dilemmas, many people would agree that finding the best ethical solution to a problem is by no means a simple matter. It may be necessary to find the right balance between competing principles and between possible benefits and disadvantages for different people depending on the situation and who is involved. But above all, it may be difficult to recognise what the key issues are or even whether there are any ethical issues involved. For this reason, it is important to make a conscious effort to consider what the ethical issues in a given situation might be and to consider the implications of different possible outcomes.
Considering the interests and wellbeing of the person with dementia
The interests and wellbeing of the person with dementia must always come first in decisions relating to the use of AT for or by people with dementia. Every attempt must be made to communicate with the person with dementia in order to find out what he/she wants and how he/she would feel about various options. When communicating with someone with dementia, some of the following techniques may help:
- maintaining eye contact
- frequently using the person’s name
- placing oneself at the same height and talking face to face
- speaking slowly and clearly but not exaggeratedly so
- only asking one thing at a time
- using affirmative sentences
- paying attention to body language
- using gestures and touch (unless it is clear that the person does not appreciate being touched)
- giving the person plenty of time to think and respond
- going over what has been said at various points during the conversation
- providing visual support (e.g. jotting down pointers as to what has been said, using photos, sketches and diagrams, providing a summary and giving the person time to read through it before deciding)
- using one’s imagination and creativity to look beyond the words to the message that the person is trying to convey
- keeping discussions short
- being attentive to whether the person might be tired, confused or lacking concentration
In addition, people can try to put themselves into the shoes of the person with dementia and also think how they would like to be treated if ever they were in a similar situation. Activities such as reminiscence work, scrap books or diaries may be useful ways of getting to know the person.
If the person with dementia is living in the community amongst relatives and friends, it may be easier to find out what his/her interests are. However, it must be borne in mind that people’s interests may change over time, with or without dementia, and that the interests of the person with dementia may be in conflict with those of his/her carer. Some forms of AT may be beneficial to informal or professional carers but the main aim of AT is to assist the person with dementia and consequently, his/her interests and wellbeing must take precedence. Moreover, it should be borne in mind that some people have dysfunctional relationships in which they do not have each other’s best interests at heart.
Considering the three Ps
In Chapter 2, we briefly examined various ethical theories and principles. The relevance of these principles will vary according to the specific characteristics of the problem and the situation, including the people involved. As technologies develop and new products become available, different ethical dilemmas may arise and other or additional principles may become important. Part of ethical decision making involves identifying and examining the ethical principles that are most relevant to the issue.
In every situation, there will be different people trying to make sense of the situation, understand what is needed and determine the best solution. Each person will be approaching the dilemma from a different angle (based on his/her knowledge, situation, relationship to others concerned, personality and own experience of life) and will therefore have a different perspective to that of the others. Although the main benefit of the device or system should be for the person with dementia, understanding the perspectives of all concerned is vitally important as the person with dementia is not an isolated unit but rather part of a complex system. Some of the other members of that system may be important for the good functioning of the chosen device or system and the continued wellbeing of the person with dementia. They have their own rights and the ethical issues related to a particular solution may affect them too.
Drawing on the later work of Hope and Oppenheimer (1997), members of the ENABLE  team (Marshall et al., 2000) emphasised the importance of paradigms when faced with the necessity to make decisions with ethical implications. The term paradigm has been used in a number of ways but the online encyclopaedia, Wikipedia (2010), provides a useful analogy, describing it as
“a habit of reasoning, or "the box" in the commonly used phrase "thinking outside the box".
Marshall et al. (2000) used the term in connection with a reference situation (a vignette) which has some similarity to the current situation but for which the ethical issues are somewhat clearer and consequently, possible solutions to the current problematic situation can be evaluated against this comparable situation. For example, one could step outside the box and ask oneself whether a particular solution would be considered acceptable and fair in the case of a person with a learning disability, a younger person or a person of the opposite sex. In this way, a consideration of paradigms can have a double function of helping decide on the best solution and helping avoid various forms of discrimination (e.g. based on age, mental capacity, gender etc.).
 A project involving five countries aimed at facilitating independent living of people with early dementia and promoting their wellbeing through access to enabling systems and products.
Last Updated: lundi 23 avril 2012