Caring for/receiving care (when increased levels of support are needed)
2014: Ethical dilemmas faced by carers and people with dementia
An increased need for care
As dementia progresses, the level of support needed typically increases. This may necessitate more significant changes in daily routines and habits. People with dementia and carers may have concerns about vulnerability, dependence, safety, dignity, self-esteem and how they will cope. The increasing severity of the symptoms and the need for both assistance and understanding may make it more difficult to keep dementia private and result in greater involvement of the wider family, friends and professional carers. This in turn may result in some intrusion into the private lives of those concerned and the need to relinquish control over some aspects of daily life.
Responsibility for care
The partners and adult-children of people with dementia are often heavily involved in the provision of care. In some circumstances, such as with young onset dementia, younger children may be heavily involved. Carers have different reasons for providing care (e.g. out of solidarity, love, duty, in return for the care they received as children). There may also be some degree of obligation, especially where outside help is lacking or unaffordable or where people feel under social pressure. In some countries and communities, there are cultural expectations that women should provide care.
A person’s ability or willingness to provide care may change as the needs of the person with dementia change or when caring becomes difficult owing to health concerns or competing personal, family or professional commitments. This can create solidarity and strengthen family or friendship ties but at times, it can lead to conflict and situations in which the wellbeing and rights of some carers are not respected or given due importance.
Safety, monitoring and control
Cognitive difficulties may eventually result in people with dementia putting themselves and others at significant risk (e.g. of fires, traffic accidents, malnutrition and neglect). It can be stressful and tiring for carers to try to keep a constant eye on the person with dementia who in turn may feel controlled, restricted and humiliated.
Round the clock supervision is an almost impossible task but, fortunately, there are numerous devices and systems which can provide memory aids, monitoring, detect and resolve problems or raise an alert. Some of these have been criticised for invading people’s privacy, reducing social contact, leading to social isolation, being stigmatizing and restricting freedom but they can also promote privacy, autonomy, independent living and self-esteem, and contribute towards greater freedom of movement. It is often a matter of how and why they are used, and whether this respects the wishes of the person with dementia (which is linked to the issue of consent).
Sometimes, carers use restraint (e.g. using threats or intimidation, sedating, locking doors or preventing freedom of movement by strapping the person to a bed or chair or using more subtle means such as chairs which are difficult to get up from. Although their intention may be to protect and care for the person with dementia, such solutions can be dangerous and are almost always unethical, abusive and even illegal.
Difficulties experienced by carers in relation to some aspects of care
As dementia progresses, carers may be confronted by situations and care needs which are difficult to manage (e.g. continence problems, the person getting lost, aggressive behaviour) and result in carers feeling physically, emotionally or psychologically overwhelmed. The difficulty might be due to a lack of training, knowledge or resources, or to the task being too intimate or transgressing personal boundaries (linked to gender roles or personal relationships). People with dementia may find it difficult and disturbing to be dependent on relatives and friends for certain types of care and in some cases resist assistance from them. In some situations, difficulties experienced by carers have serious consequences resulting, for example, in the use of restraint, physical abuse or premature entry into residential care.
Impact of caring on carers and on relationships
People with dementia and carers may start to perceive changes in the nature of their relationships. Sometimes, carers view this as a reversal of roles with children and partners feeling that they have taken on the role of parent. People with dementia may feel that they are considered or treated like children. Partners may feel that they have become more of a carer than a partner, spouse or lover, and this may have an impact on their sexual relationship with the person with dementia. Changes within relationships can be difficult for all concerned and may be accompanied by tensions, sadness and in some cases a sense of increasing emotional detachment, which may have an impact on the continued provision of care and the survival of the relationship. However, as suggested in relation to who provides care, dementia can also bring people closer together as they join forces to tackle difficulties and challenges (see also section 6).
Autonomy and consent
The increased need for care tends to be accompanied by difficulties for the person with dementia to take decisions (e.g. to consent to treatment or make decisions about various care options or with regard to everyday life). Carers may need to take decisions on their behalf which would previously have been made by or with the person with dementia. Ideally, they will consult and involve the person with dementia as far as possible in decision making. However, there is risk of carers sometimes taking over and failing to respect the autonomy and hence the dignity of the person with dementia (e.g. owing to time constraints, underestimation of capacity and difficulties communicating). Sometimes, carers know that the person with dementia would object to certain decisions but feel it would be unsafe to respect their decision and that they lack the capacity to make that decision. This can sometimes result in the use of deception (e.g. adding crushed medication to food), which can result in the carers feeling guilty and dishonest. As with advance care planning, certain issues involving deception may be governed by different laws. In addition, the safe use of medication may require advice from a doctor or pharmacist.
Ethical issues linked to caring for/receiving care
The main issues linked to the period when increasing levels of support are needed, which might have ethical implications, include the following:
- the need to manage risk,
- the impact of increased care needs on relationships,
- determining who should provide care,
- the use of restraint and deception,
- the impact of providing care on professional, private and family life,
- decision making when the person with dementia lacks the necessary capacity,
- managing difficult care situations.
Gary is 70, has Alzheimer’s disease and lives in a city centre flat with his partner, Mike. As time goes by, Gary finds it harder to find his way about and to do the shopping. He sometimes takes a long time to come home, and often comes home without the items he has gone to buy. Gary loses money, has lost the notion of the value of money and sometimes gives huge tips in pubs and at the hairdresser’s. Mike has set up a few standing orders so he doesn’t need to handle money but Gary resents being controlled and feels humiliated. He argues that Mike has no right to restrict his money and make arrangements behind his back as he is not his legal guardian.
Mike wants him to carry a mobile phone which he does but he cannot work out how to use it. He puts papers in his pockets with his name and address and has sewn a label in one of his coats. When Gary discovers this, he gets cross saying he is being treated like a child. Mike has heard about a special watch which can track people’s whereabouts and locate them if they get lost. He knows that Gary would accuse him of trying to track him like a criminal. He plans to put it in Gary’s rucksack when he goes out without telling him and thinks that might be justifiable as he is responsible for his safety.
Mike is starting to get tired and irritable. Gary often gets up in the night and this disturbs his sleep. He wants Gary to go to day care and to allow a carer to help him get washed and dressed in the morning so he can have a break but Gary refuses. Mike is quite open about being gay but Gary has always been more discreet. He doesn’t want everyone to know. Gary’s sister, Katie, used to come round in the morning, get Gary out of bed, washed and dressed, and prepare a snack. At that time, Mike had a part-time morning job to help make ends meet. However, Katie’s husband complained that she was not devoting enough time to the family and they had a big argument about it. Now she hardly every visits and feels guilty about not helping as she gets on well with her brother.
Mike has given up his job and is finding it increasingly difficult to cope. He hates to admit it but does not see Gary in the same way as he did before. He feels more like a parent than a partner and worries that their sexual relationship is starting to be affected.
Ethical commentary by Prof. Guy Widdershoven (the Netherlands)
This case shows the dilemmas in which a person who cares for someone with dementia can get caught. A dilemma entails a choice between two alternatives, each having a strong moral appeal. When the person chooses one of the alternatives, the other one cannot be realised, leading to moral costs. The choice cannot be avoided, since not choosing automatically means going for one of the two alternatives.
An example of a dilemma in this case concerns the tracking watch. On the one hand, by putting the tracking watch in Gary’s rucksack, Mike can prevent Gary from getting lost and becoming anxious or getting into danger. On the other hand, if Mike did this secretly, he would be acting behind Gary’s back and compromising Gary’s autonomy and the equality in their relationship. Thus, whatever Mike decides to do, he will not be able to respect important values in his relationship with Gary (as he would either go against the value of respect and equality or against the value of care).
In dealing with moral dilemmas, one should be aware of the intricacy of the problem, and the costs related to one’s choice. It is crucial that the person facing the dilemma is open to the conflict between values, and to the fact that it is impossible to do justice to all relevant values. Thus, Mike should be aware that when planning to put the watch in Gary’s rucksack, he is jeopardizing crucial values (autonomy and equality). He should not automatically follow his drive to care for Gary’s safety, but realise that in doing so he will put Gary’s autonomy and the mutuality of their relationship at risk.
In case of a conflict of values in the care for a person with dementia, it is good to share one’s worries and doubts with other people who are involved. Mike might contact Katie, not to try and convince her to take up daily care again, but to share his concerns and reflect together on his conflict of values. This would also enable her to play a role in the process of finding solutions for Gary, and thus diminish her feelings of guilt. Mike might also try to contact professionals, such as the GP or a community nurse. Other people who know Gary might have a different perspective on the situation, and for instance help Mike to see that he takes his responsibility for Gary’s safety too far. They might also be able to act as an intermediary between Mike and Gary, and explain decisions to Gary more easily, as they are less emotionally involved in the dilemma.
Care for a person with dementia inevitably comes with dilemmas. In a moral dilemma, it is important to be aware of conflicting values and reflect on possible courses of action. Involving other people may help, not because they can solve the issue, but because they can bring in new perspectives and foster the process of deliberation.
June and Agnes are in their eighties. They are sisters and now, both widowed, live together. Agnes was diagnosed with dementia five years ago. Last year, Agnes started to have continence problems but was able to manage this herself. Now, she sometimes sits around for hours after having had an “accident” without changing her pad, doesn’t clean round the toilet very well and occasionally leaves soiled pads lying around.
Her son came round one day and felt sick with the smell. June has actually got used to the smell and due to poor eyesight can’t see how dirty the bathroom has become but the main problem is that Agnes can be quite violent when June tries to help her. Nobody would believe it. Agnes is such a gentle soul but when June suggests that she might need to change her pad, she becomes indignant and tells her to mind her own business in no uncertain terms. Worse, when June tries to take her arm to lead her to the bathroom, she digs her nails into her arm and has slapped her in the face a few times. June shows the son the nail marks.
Agnes refuses to take tablets. She claims “they” are trying to poison her. June therefore crushes several tablets every day and hides them in her meals. The son worries that this might be dangerous or illegal and that technically speaking, as his mother has clearly stated that she does not want to take them, it is wrong. On the other hand, not taking them could seriously damage her health.
Agnes’s son was angry with his Aunt June for leaving his mother in such an undignified state and felt that she was neglecting her and not respecting her autonomy. He had also noticed that his Aunt often put a tray across his mother’s armchair which made it impossible for her to get up. She explained that it was the only way to get a moment’s peace and get things done whilst keeping Agnes safe. It was quite obvious that Agnes felt frustrated and cross.
Whilst his mother was having a nap, the son and his Aunt talked about everything. He realised how difficult it had become for his Aunt to care for his mother, both physically and emotionally. The social services have not been very helpful, perhaps as his mother has not been honest about the extent of the problem. He doesn’t feel able to intervene, especially with intimate care, because it is his mother. He doesn’t want his mother to end up in a home and realises that it is unfair to rely on his Aunt, but what else can he do?
Ethical commentary by Ms Charlotte Emmett and Dr Louisa Jackman (United Kingdom)
People with dementia have the right to make choices about their own lives. Yet problems can arise when those choices conflict with a carer’s perceived duty to keep a person safe. With the best of intentions, some carers can be overprotective and assume those they care for are not capable of making their own choices. This can deny people their human rights.
We should not assume that Agnes cannot make simple decisions about her care without assessing her capacity. Forcing Agnes to take pills or restraining her in a chair without her consent, when she might be capable of making these decisions herself, would be unlawful and a serious affront to Agnes’ dignity and autonomy. Restraint could also physically and mentally harm Agnes and, if used inappropriately (for convenience or without lawful justification), would amount to abuse.
Even when Agnes cannot demonstrate capacity to make a choice, her views should always be considered when deciding what is best for her. However, Agnes may not be able to express herself in ways that can be easily understood; so we need to look for clues in her communication. For example, we could see Agnes’ comments about being poisoned as paranoia and a symptom of her dementia. But Agnes may be telling us that the pills are having unpleasant side-effects and make her feel bad. Similarly, Agnes’ violent outbursts around her incontinence could stem from feelings of humiliation and frustration as June intrudes on what Agnes considers to be a personal matter. All this suggests that to do things ethically, we need to listen carefully and communicate well with Agnes, taking into account the ethical standards and laws that apply.
Respecting Agnes’ autonomy also implies being honest and not deceiving her. Hiding crushed pills in Agnes’ food, however well-meaning, detracts from her autonomy and threatens the relationship of trust she has with June. It could also lead to Agnes suffering distress as she experiences side-effects that she can’t explain. Legally, Agnes’ prescribing doctor’s agreement must be sought for this practice. Agnes should have every opportunity to express her views about her care even when the resulting conversations between June and Agnes are likely to be difficult.
In the context of dementia, Agnes finds herself in a system of care where the needs of all parties are relevant. Agnes’ son and her sister have different perceptions of Agnes’ need for personal autonomy: Her son is unhappy about the way in which she is restrained, but June is more concerned that Agnes’ preferences regarding personal hygiene are respected. However, they can both contribute in a meaningful way to Agnes’ care. For example, Agnes’ son may be the best person to access more information and additional support for June.
Ultimately, the different views and limitations of June, Agnes and her son will need to be navigated and carefully negotiated during the decision-making process. Acting ‘ethically’ means trying to find the best route through these different perspectives whilst acknowledging that any outcome may not always be perfect from everyone’s point of view.
Last Updated: Monday 08 February 2016