Living with dementia (getting on with routine life/adapting to challenges)
2014: Ethical dilemmas faced by carers and people with dementia
Life goes on
After the diagnosis and the start of the process of coming to terms with dementia, normal life goes on. People still do whatever they did before diagnosis (e.g. cook, go fishing, do sport, go on holiday and spend time with friends and family). Some are still in paid employment and many will be in relationships and have social roles such as volunteer, committee member, parent, grand-parent, partner and friend. However, having dementia gradually affects the ability to do certain things and may have an impact on relationships. During this period, people with dementia and their carers are increasingly faced with challenges and may need to make changes and accept help from others. This is sometimes described as involving a series of losses. However, people with dementia are increasingly showing that living with dementia can also involve new experiences, learning new skills and making use of new supportive technologies.
The right level of assistance
People with dementia are sometimes unaware that they need help or prefer not to ask. They may have concerns about being perceived as a burden or find it difficult to accept being dependent on other people. Nevertheless, carers may notice areas where they need help and ideally, a formal assessment of needs should be carried out in order to identify any support needed. Carers often have concerns about safety and this can sometimes result in over-protection and a tendency to take over which reduces possibilities for self-expression, autonomy and freedom. It is not always easy to find the right balance. Providing more support than is needed may be demotivating to people with dementia and lead to a premature loss of skills.
Abuse can be financial, emotional/psychological, physical or sexual. It can also involve abandonment and intentional or unintentional neglect, and affects both men and women. Some people with dementia, and some people who do not have dementia, are abusive. In some cases, the perpetrators and victims may have a history of abuse, for example in a marital relationship, which has never been successfully addressed.
The abuse of people with dementia can occur in their own homes, in residential care settings and anywhere there is a relationship and expectation of trust. Having dementia and being dependent on other people significantly increases the risk of abuse and can make it more difficult to detect or prove.
Abuse does not always involve malicious intent. People are not always aware that their actions or attitudes are abusive. Sometimes they suspect or know that they are but genuinely feel that they had no alternative (e.g. due to lack of support, difficulties coping and stress). They may in addition fear prosecution should the abuse be uncovered and fear that the person with dementia would be placed in an even worse situation. Outsiders who suspect abuse may also share such concerns. People who are dependent on their abusers may feel helpless to report the abuse but sometimes tolerate it as they are afraid of the consequences (e.g. retaliation, having to go into residential care, shame or fear of the consequences for the perpetrator with whom they have a relationship).
Abuse by people with dementia (e.g. physical and verbal aggression or sexually inappropriate behaviour) is not common but nevertheless possible. Often, such behaviour is attributed to the consequences of brain damage, something that may be true especially for certain types of dementia such as fronto-temporal. However it may also result from frustration, anger and fear, especially if the person finds it hard to communicate their needs to others.
When the truth doesn't seem to help
Memory loss and confusion can be disturbing not only for people with dementia but also for other people. The person with dementia is often unaware that they have forgotten something or that they are confused. Consequently, they try to make sense of their experience with the limited or faulty information they have at their disposal. They may, for example, blame people for moving or hiding things or for not having informed them about something. Explaining that they have forgotten something or put it in the wrong place is not always helpful and can lead to upset and arguments. Sometimes carers play along in an attempt to de-fuse the situation or help the person with dementia to save face.
It is quite common for people with dementia to ask the same question repeatedly and almost immediately forget the answer. Constantly answering the same question can be time-consuming, frustrating and irritating. Also, some questions are difficult to answer. Individual experience may have shown that a truthful response is emotionally disturbing or unhelpful. Carers deal with this in different ways (e.g. ignoring questions, being deliberately ambiguous, withholding information, complaining, writing down responses, providing reassurance whilst avoiding the real question or lying) with varying degrees of success.
Ethical issues during this process of living with dementia
The main issues during this process of living with dementia (getting on with routine life/adapting to changes), which might have ethical implications, include the following:
- determining whether, how much and what kind of support is needed,
- balancing concerns about safety and risks with autonomy (conflicting interests and priorities),
- how to detect and address possible abuse of people with dementia and/or carers,
- how to react in situations where being honest seems pointless, unhelpful and may be emotionally disturbing.
My mother has vascular dementia and lives on her own. She manages quite well and hardly ever asks for help. She has always been a very independent person. Her husband (my father) died when she was in her early fifties and she took over the running of the family business. Now she is retired. I visit whenever I can get time off work and find someone to keep an eye on my little boy.
Last week, I found her pill box dispenser down the back of the sofa. She had not taken her tablets for blood pressure and her heart condition for two days but insisted that she had and that the dispenser was in her bedroom. I felt awkward but showed her the dispenser and suggested she must have thought I was referring to her vitamin tablets. She looked embarrassed and sad. Later in the day, as I was doing some cleaning, I came across a burnt tea towel and noticed that the house was not very clean. I asked her about how she was managing with cooking and the housework. She became quite defensive and told me she was perfectly capable of looking after her home and herself.
I got talking to her neighbour who told me that once or twice she had seen my mother leave the house in the middle of the night and had gone out to see what she was doing. She said my mother seemed totally disorientated and unable to find her way back to the house. I am very worried about my mother but she insists she is fine and I cannot go behind her back. I don’t know what to do, to do right.
I have got dementia. I was diagnosed three years ago and now live with my son and his family. I am very happy and so grateful to them. I am scared of my granddaughter though. She is a lovely girl but has a problem with drugs. I know I have difficulties with memory and that I lose things but I was absolutely certain that she was stealing money from my bedroom drawer. I alluded to that one day and she pushed me violently and threatened to have me put in a home. One day, her younger sister saw her stealing and told me. I asked her not to tell anyone. I didn’t want to create problems in the family and was afraid that I might actually have to go into care “for my own good”. She agreed but I can see that she worries about me a lot and doesn’t know what to do. Me neither, I am scared and keeping quiet won’t help my granddaughter with her problem.
Ethical commentary by Dr Anneli Sarvimäki (Finland)
Response to the lady with concerns about her mother
You are in a situation where you want to do what is good and right for your mother, but what is good and right in this situation? You are torn between the following aspirations: 1. Caring for your mother’s safety, 2. Not hurting your mother’s feelings and 3. Being honest, not going behind your mother’s back.
The ethical principle “to do no harm”suggests you should consider both your mother’s safety and her feelings. The ethical value “honesty”,on the other hand,suggests you should not go behind her back. But although all these principles and values are good, the problem is that by following one (being honest) you are at risk of jeopardizing another (not hurting her feelings). So try to decide what is most important in this situation. In this situation it seems like the most urgent thing to consider is your mother’s safety. She could be in real danger if she wanders off in the middle of the night. By not taking her medicine she also puts her health at risk.
So the question is how to secure your mother’s safety without hurting her feelings or going behind her back. The important thing then becomes how the possible safety measures are presented to her. Her image of herself as a competent person can be supported by reminding her of all the things she can still manage and supporting her in doing all those things.
Response to the grandmother
You are in a difficult situation where many people’s interests and wellbeing are at stake. Is there a solution that is good and right for everyone or do you have to choose whose wellbeing is most important? You could consider the situation from the viewpoint of:
- your own safety and wellbeing
- your granddaughter’s dishonesty
- your granddaughter’s safety if she goes on stealing and using drugs
- your younger granddaughter’s distress
- family peace.
You realise what is at stake when you write that keeping quiet won’t help your granddaughter with her problems. It will not guarantee your own safety either, since she can apparently become violent and unpredictable. An additional undesirable state in this situation is your younger granddaughter’s worries. So this is not a good situation for at least three people. What is gained in this situation is family peace and the likelihood that you can go on living with your family. But is this worthwhile if you cannot feel safe, your younger granddaughter suffers and the older one continues her self-destructive behaviour?
Would speaking up be the right thing to do considering everyone involved? I gather that speaking up would mean talking to the parents, since the granddaughter is still living at home and they have a responsibility for her. Speaking up would give the parents a chance to help their daughter deal with her problems, which is a good thing.
Making the parents aware of what is going on could make you and your younger granddaughter safer and less worried, which is also a good thing. What harm could come out of speaking up? Family peace might be disturbed at least for a while, but sometimes it is necessary to cause some harm in order to achieve something good. But I understand that the big question for you is whether they would believe you or think that your dementia is becoming worse, causing problems in the family, and make you “go into care”, as you put it. But, as you say, keeping quiet won’t help and you are scared. The younger granddaughter has seen the same as you, so she may want to speak up too. Hopefully, your son and his wife can see the situation for what it is.
My Great Auntie Peg lives in a care home. I visit regularly and sometimes find her in a state of anxiety, pacing up and down the room and staring out of the window. She asks, “Is Alfred not back yet?” Alfred is her husband and he died almost thirty years ago. I don’t know what is the best thing to do. When I tell her he died, she breaks down in tears. When I reassure her that he will be there soon, she seems relieved but I feel awful for deceiving her because she trusts me.
Ethical commentary by Dr Ian James (United Kingdom)
This scenario is typical of the vignettes I have explored with my colleagues in recent years via empirical studies with people with dementia, their carers and professional staff. Our findings suggest lies should only be used as a last resort, and only after the truth has been repeatedly trialled and shown to be problematic. When the truth consistently produces distress, the next step is to try to meet the person with dementia’s perceived need. This can be done by attempting to find out why the person wants to see the deceased member of her family (feelings of insecurity, boredom, etc.). If we could identify the reason why Peg wants to see her husband, we may be able to satisfy her need directly. We may also be able to deal with it indirectly by using pictures and videos. A useful technique which uses archive sound and video tracks is called Simulation Presence Therapy.
If such strategies fail then carers can attempt distraction. The distraction techniques usually involve trying to shift the person’s attention on to a different subject or activity. Once Peg’s focus is re-directed she may forget her need to see Alfred. However, if none of the above strategies prove effective, a therapeutic lie should be considered. Therapeutic lies are constructed with the aid of family members, and are care planned so that they are communicated well and consistently. This also ensures that the plans are person-centred, consistent with the person’s history, and able to meet the needs of the individual in a particular situation.
If one chooses to engage in this strategy there is a lot to consider, and our experience is that lies should be avoided as a therapeutic technique unless the liar has been trained to use them in an appropriate and ethical manner. So from this perspective, if we are going to endorse the use of lying with Peg, we need to teach the relative and care home staff to ‘lie as effectively and ethically as possible’.
In conclusion, the use of therapeutic lies is a controversial topic requiring appropriate governance. A therapeutic lie should be seen as one of a range of communication strategies. If a care home, for example, chooses to use such strategies, it will require staff to be trained appropriately. This is a complex area, with differing lies, at various times, being helpful for certain people. The case of Peg is a particularly interesting one, because it involves a lie being told by one family member to another. From our studies we are aware that ‘relative to relative’ lies tend to be judged especially negatively by people with dementia because they undermine the ‘holy grail’ of family trust.
Last Updated: Monday 08 February 2016