Dementia Dilemmas

Supporting someone with dementia and the way the illness presents for them may mean at times you will be faced with moral dilemmas as you try to keep the person on an even keel, as well as feel safe and respected, and so you do what you feel is best.

With all decisions, like a lot of things in life, there is no right or wrong answer other than to do your best at the time taking into account your knowledge of the person and what you feel is right at the time.

Telling what can be considered a therapeutic lie might be considered kind and in the person’s best interest at the time but is it ever right to lie to someone outright? How would you feel if someone lied to you? Would you feel it is acceptable?

It is worth bearing in mind that for a lot of people with dementia awareness can vary so if you say something and it is clearly a lie then they may remember on another occasion that you lied to them and this may mean they get angry with you and the trust you have may break down. As we know from the ‘bookcase model’ feelings remain even if the event that triggered the emotion has been forgotten.

Another alternative is to bend the truth. If you are not asked a direct question then you can be selective about how much you say. If you are asked a question outright such as is my mum dead, then you have a choice of answering the question truthfully or redirecting the conversation.

Some examples:

Where is my Mum/Dad? They said they were coming to collect me.

There is no easy way of interpreting what is going on here other than your personal knowledge of the person. There is a lot of thought which says if people are asking for their parents then they are feeling insecure. When we think of parents, if we have been fortunate to have been brought up in a supportive environment then if we think of our parents we think of love, and security. However, it could also be the case the shelves on the bookcase have fallen to the point where the person with dementia believes they are at an age where there parents will be coming for them.

So how might you respond?

• You could tell them outright your Mum or Dad is dead. They might respond by saying “oh yes, I forgot” or they might get upset and say ‘I didn’t know, why didn’t anybody tell me?” which will mean you will be comforting someone who is upset. For some people they cannot retain the information so each time you tell them their Mum/Dad has died, you may be bringing up feelings of grief and upset.
• You could ask the person how old they are, and then depending what they say ask them if they think their Mum/Dad is alive? Here you are testing out their ability to reason and reach a logical decision. This may be variable working sometimes and not others.
• You could ask the person with dementia how they are feeling and maybe is there something specific they want to talk to their Mum/Dad about so perhaps you can help.
• You could start a discussion about the Mum/Dad. You could say something like “I was thinking about them the other day. Do you remember when… “and come up with some past occasion. This may prompt a conversation about reminiscing and you are steering the conversation hopefully into a happy area.
• The person might say they are worried about their parents. You could reply that they are safe and there is no need to worry. This is bending the truth but is not a direct lie.
• You might say your Mum/Dad is at work/ too busy to come right now. This would be a direct lie and you may be found out.

What is the matter with me? I can’t remember things. I used to have a good memory?

How you respond will either open up or close down the opportunity for conversation.

• You could say you are fine. There’s nothing wrong with you. This would be a direct lie and is shutting down the conversation. Perhaps you find it difficult to talk about what is happening. This however, may be an opportunity to open up a conversation and help the person with dementia talk about their concerns for the future. This could enable them to plan so they live their life based on their values and wishes not those of other people.
• You could ask “what makes you say that?”.They might tell you how they feel. If you know from previous conversations they have not wanted to hear the word ‘Dementia’ then you could reply saying they have problems with their memory. Whilst this is bending the truth, dementia is more than a problem with memory, you are opening up the conversation and it is still enabling the person to talk about their concerns. It is also worth bearing in mind people can change over time. So whilst initially they may not have wanted to talk about things, later on they might.
• If they are happy to talk about dementia, then you could say “you have dementia, but you are coping well and I am here to help you so try not to worry”. Your knowledge of the person will help here.

When are we going home?

This is usually a sign that the person is not comfortable in their environment. It can happen when the person with dementia is out on a visit because they feel the need to be in the security and familiarity of their own home or they may be at home and no longer recognise it as their current home. Someone may have lived in their home for 10 years but if the shelves on their bookcase have fallen off beyond this, they quite likely will not recognise their current home.

• You could say, if you are out on a visit, “we are not going home yet why don’t you have a look at x’ and give them something to try to distract them or start having a conversation with them.
• You could ask them where is home? Where do you need to get to? Who will be at home now? This will help you determine what period in time they are thinking about and you can then perhaps reminisce about that time perhaps with music and photos.
• You could say if you live at home, ‘you live her, this is home and you have lived her for x years. This is your home’. This may be the truth, however this is not reassuring to the person with dementia and may provoke feelings of frustration and anger at not being listened to which you will have to deal with. This can particularly happen if you are preventing the person from leaving the house and they feel locked in. You must always be safe so it may be necessary to be prepared to leave the house with them. Hopefully after a walk they may have forgotten about “going home” and you can suggest you both return home.

These are just some examples and you may be presented with others. Each situation will require a response and each response will present a reaction. Whatever you decide, choose not to feel guilty about the decision you make if you are making the decision in the best interest of the person with dementia. Having feelings of guilt will not be helpful to you and nor will they help the situation.