The initial period of adaptation (shortly after diagnosis)
2014: Ethical dilemmas faced by carers and people with dementia
Who to tell
Once diagnosed and provided that they have been informed of the diagnosis, people with dementia, and in many cases their carers are faced with the decision about who to tell. They may feel that certain people should know, either now or later, perhaps because those people will eventually care for them or simply because they have always been open with each other about important issues in life. However, they may have concerns about the implications of doing so (e.g. how will it affect their relationships, how will they be perceived and treated by those who know and how will those who know be emotionally affected etc.).
Making plans for the future
As people with dementia and their carers gradually start to come to terms with the diagnosis, many start to think about their future lives and the organisation of care.
"I was shocked. Then I thought about all the plans I’d made for my retirement with my wife. I realised it would no longer be possible. Now, much later, I’m enjoying life with my wife but it’s different and I sometimes feel a bit bitter about it." (Alzheimer Europe, 2009)
Ideally, when a person is diagnosed with dementia, they should be provided with information about available support and details of organisations which can provide information as well as practical and emotional support. It is important to think early on about what is important to you and to discuss this with your doctor. This is sometimes called “advance care planning”. The list below shows some of the issues you might want to consider when planning care .
Planning ahead/things to consider
- Specific types of care, treatments or tests you would be willing to have if needed or would prefer to avoid if possible.
- An advance directive (in which you consent to or refuse specific treatment in advance),
- A statement of values (in which you express your likes and dislikes, values and wishes in relation to care),
- Guardianship measures,
- Proxy decision making (organising for other people to make decisions on your behalf or to be consulted about your care),
- A powers of attorney,
- Taking part in research.
However, some people with dementia are not ready to consider certain issues. They might prefer to focus on the present or to leave future decisions to their partners or healthcare professionals. This might be their way of coping or a reflection of their approach to life. Similarly, some healthcare professionals and carers are reluctant to initiate or take part in discussions about end-of-life issues in the early stages. Although this may be based on good intentions, it can also result in people with dementia missing out on the opportunity to make important decisions about their lives (e.g. about residential care or the wish to live and die at home) at a time when they are still able to do so.
Thinking about research
When diagnosed with a serious medical condition, people often want to know what kind of treatment is available and whether there is a cure. There are currently four key medical drugs on the market which treat the symptoms of dementia (principally of Alzheimer’s disease) but there is none which cures any form of dementia. Some people might be interested in taking part in a drug trial, either in the hope that they might benefit from the research or to benefit future generations. However, the aim of a clinical drug trial is to produce generalizable knowledge and not to benefit individual participants. Participation usually involves some degree of risk. Also, some of the participants will not receive the new drug but might be unaware of this possibility.
Research is important to improve existing treatment, to find a cure or way to prevent dementia, and also to test out a whole range of approaches to care and to improve the wellbeing of people with dementia and their carers. As dementia progresses, the capacity (i.e. the legally recognised ability) of people with dementia to consent to research may diminish. The decision to participate in research is therefore sometimes taken by a proxy decision maker. However, people are sometimes hesitant to allow another person, especially one who is considered vulnerable, to take the same risks as they would themselves. It is possible to express such wishes in an advance directive or statement of values even in the absence of precise details about the specific nature of a future research project.
Being diagnosed with dementia does not necessarily mean that a person has to give up driving immediately although, depending on their condition and the stage of dementia, their doctor might advise them to do so. In some countries, doctors do not have the right to inform the driving authorities that a person is not safe to drive. There is currently no test which doctors can use in the surgery to assess driving ability accurately. In most countries, the onus is on the person with dementia to take the necessary steps to stop driving when they are no longer able to do so safely. In some countries there are specialist assessment centres for driving. Problems arise when the person with dementia does not realise or will not accept (when told by family, friends or their doctor) that they are no longer able to drive safely. Giving up driving can have a considerable impact on independent living, a person’s social life and self-esteem.
Ethical issues during the perdiod shortly after diagnosis
The main issues during this period shortly after diagnosis, which might have ethical implications, include the following:
- whether to inform other people (e.g. relatives, friends, colleagues and employers) about the diagnosis and the impact of doing so,
- whether to take part in advance care planning and if so how,
- whether to leave decisions to others,
- whether to address sensitive issues,
- reasons for, hopes, risks and understanding of participation in research,
- what to do about driving if the person with dementia is becoming unsafe and is reluctant to give up.
 Some of these issues may be governed by national laws, regulations or guidelines (e.g. covering consent, autonomy, restrictions of freedom and guardianship).
Hitesh has reacted to the diagnosis quite well, at least within the family. He and his partner, Pam, have explained to the children about dementia. They talk openly about their worries, about things that Hitesh finds difficult and look for solutions together. Hitesh does not want to let his in-laws or members of the local community know. He has gradually reduced his social engagements and work with the church. He relies on his family to respect his wish to keep the matter private. In so doing, their social life is also restricted. Whilst visits are not banned, Pam and the children have stopped inviting friends round. Pam is starting to feel isolated. She regrets not being able to confide in her sister.
People are starting to ask why they are no longer invited round, why he no longer attends social and religious events and why he sometimes acts strangely. Pam is sure that they would understand if they knew and that not telling them may result in them judging Hitesh harshly. She feels dishonest towards people who are genuinely concerned about him. Despite his openness within the close family, Hitesh feels ashamed and wants to protect himself and his family.
In the context of advance care planning, the doctor has suggested that Hitesh should consider writing an advance directive or statement of values. Hitesh is quite enthusiastic about the statement of values but says that he is not dying and does not want to think about end-of-life decisions yet. The doctor has explained that dementia can last many years but that as mental abilities gradually decline it is better to think about important decisions, not just about the end of life, early on. Hitesh doesn’t want to hear anything about it. Pam is worried about being asked to make some decisions for him later and does not want to be in that position.
Hitesh has always been fairly critical of research, sometimes coming out with statements like, “One day they tell you something is good for you and the next day, they tell you the exact opposite! I don’t think they have any idea!” However, he has jumped on the idea of taking part in a clinical drug trial. He says he doesn’t care if there is a risk, he absolutely wants to take part and is even willing to write that in an advance directive. His lack of concern about the details of potential studies and the risks involved lead the doctor to think that he may have unrealistic hopes and not fully understand that he might not even be in the group which receives the experimental drug.
The doctor has told Hitesh that he must let the driving licence authorities know of his diagnosis. He is very reluctant as he doesn’t wish to lose his license. He and Pam argue about it. She tries to persuade him to report it and he says that she is cruel and unsupportive. He says that he is still safe and will give up driving whenever that is no longer the case. Pam doesn’t drive and has always been dependent on Hitesh to get the shopping in but sometimes she gets scared when in the car with him. She thinks a lot about reporting him anonymously but can’t bring herself to do it. Meanwhile, she accompanies him when he goes out driving to try to ensure that he doesn’t have an accident. She has also thought about asking her brother-in-law, who is a mechanic, to disable the car.
Ethical commentary by Prof. Jan Oyebode (United Kingdom)
This vignette outlines several issues on which Pam and Hitesh differ. Hitesh does not want to tell people outside the family that he has dementia, make advance care plans or tell the driving license authorities about his diagnosis, whereas Pam feels telling others and planning ahead is the right way forward. A possible common denominator between these situations could be that Hitesh lacks awareness of his problems. However, a careful reading of the vignette casts this into doubt, since we are told he is open with his immediate family about his dementia. Therefore his attitude seems more likely to be a result of the sense of shame and fear of stigma.
Hitesh is not described as worrying about his decisions but nonetheless he does face an ethical dilemma of whether to ‘come out’ as having dementia. As long as he decides not to let others know, he protects his autonomy and privacy, both of which appear very important to him. However, it could be argued that this decision leads to maleficence (i.e. it causes harm to others) in that it is limiting the social life of his family and making them lie to others. If he declares that he has dementia this may well damage his autonomy – indeed, his GP doesn’t interpret Hitesh’s enthusiasm for taking part in the drug trial as showing desperation for help but seems to assume that Hitesh does not have mental capacity to decide whether to take part. So what is Hitesh to do? Perhaps dementia feels such a threat that he is ignoring his conscience when it tells him that his actions are causing problems for his family. Maybe if he can talk this through with them, he’ll come to give this more weight and the balance will change, especially if he has a strong sense of ‘familism’.
The dilemmas are more obvious for Pam and revolve around whether to tell others about the diagnosis. By covering up for Hitesh, she keeps his confidence, maintains his trust, protects his autonomy, and shows compassion for his position - so not telling has a lot to recommend it. However, by covering up she is not being truthful. If she tells others, the damage to Hitesh’s trust in her could have long-term consequences for their relationship but she has the sense that if she tells his friends they will become more sympathetic to his position, in other words she’ll prevent harm to his reputation.
The consequences are slightly different with regard to telling the driving authorities. If she doesn’t tell, maybe she is not giving enough weight to the potential serious harm if he has an accident. Telling the authorities would recognise this vulnerability, but would still damage trust. This has pushed her to consider going behind his back or deceiving him; but if she did this, she’d be betraying her values around truthfulness and so would damage her sense of her own integrity.
Maybe the answer is neither to tell or not tell, but is for them to find a way of talking more to each other about these issues and think perhaps about facing stigma together for the sake of avoiding harm and lies.
Ethical commentary by Dr Dianne Gove (Luxembourg)
Participation in a clinical drug trial represents a valuable contribution to society but the safety, interests and wellbeing of each research participant are of paramount importance. The concerns that Hitesh’s doctor (and perhaps also his family) has about his possible participation are in keeping with the principles of beneficence and non-maleficence. Such concerns might represent an ethical dilemma if combined with others about respecting his autonomy and promoting his quality of life, ability to cope and hope. Should these concerns influence Hitesh’s possible participation and does he not have the same right as other people to decide for himself and take risks? Well, it depends whether he has the capacity to make a decision about participation in a trial.
Although a person should be considered to have capacity unless proven otherwise, knowledge that a person has dementia should be considered as reasonable grounds for doubt. Researchers are obliged to obtain informed consent (which includes an understanding of the risks involved and the limitations surrounding possible benefit). The aim of a clinical drug trial is to produce generalizable knowledge and not a tailor-made response to an individual’s medical condition. It is not clear what lies behind Hitesh’s sudden enthusiasm for research and whether he is able to make a realistic evaluation of the risks and potential benefits involved.
It is neither feasible nor desirable to try to rule out every possible risk and attempts to do so may jeopardize a person’s quality of life. However, the doctor’s concerns about Hitesh’s wellbeing, safety and autonomy would be justifiable. Continued dialogue between Hitesh and his doctor and family could be beneficial. Hitesh’s hopes and expectations and his threshold for taking personal risk might possibly seem unrealistic. However, he has a right to have hopes and take risks, even to make decisions that others consider unwise, provided that he has the relevant and necessary capacity.
A diagnosis of dementia should not be considered as proof that a person can no longer drive safely. Hitesh feels that he can still drive but Pam’s fear suggests that he perhaps lacks awareness about his driving ability. Perhaps his doctor has already discussed the issue with him. However, there is currently no reliable “off the road” test which can determine with precision a person’s driving ability. Patients sometimes ignore their GP’s advice but GP reporting to the relevant authorities of patients whom they suspect lack such capacity violates the principle of confidentiality. This may affect the level of trust between doctor and patient which would be regrettable but the safety of the general public might be deemed a moral justification for such action.
Meanwhile, Pam is contemplating whether to sacrifice Hitesh’s trust for the sake of his and other people’s safety and even to prevent him from driving by means of deception (also involving his brother). Such measures might be considered as patronising, failing to respect Hitesh’s autonomy and dignity, dishonest and deceitful or on the contrary, as protecting someone who lacks insight into the dangerousness of their behaviour. Either way, there will be implications for their relationship. It might therefore be helpful first to encourage Hitesh to talk about his reasons for wanting to continue driving (e.g. his role within the couple, Pam’s dependence on him to get around, the car as a means to pursue his interests and social contacts), the emotional, psychological and practical impact of giving up driving and to explore ways to address these issues.
Last Updated: Monday 08 February 2016