A person with dementia might ask questions that are difficult to answer truthfully without causing distress. Read our advice on why the person might be asking these questions and how to respond in situations where it might be better to lie or to not tell the whole truth.
I try not to lie, honestly, but some things push the boundaries: “Socks! You shouldn’t have”; “Oh, I thought you meant I should eat the entire cake” and – often to my subsequent regret – “No, I’d love to have your mother visit”.
Being a bit flexible with the truth is just part of the social contract, it seems – the price we pay for jogging along in relative peace. But what if one of us has dementia? What price comes with telling the truth then?
Types of questions a person with dementia might ask
The questions people living with dementia ask can challenge us. You may recognise some of these from your own experience:
When is dad coming to visit? (When the person’s father is sadly long dead)
Will I be going home soon? (Person living in a nursing home)
Shall I set the table for the guests? (From a former B&B owner, now in residential care)
You seem nice… but who are you? (Person to their partner)
Who are those little people by the window? (Person could be living anywhere)
‘I want to go home’ – What to say to someone with dementia in care
Here are some ways family members and primary carers can approach the difficult question, ‘What do I say to someone with dementia in residential care who wants to go home? ‘Here are some ways family members and primary carers can approach the difficult question, ‘What do I say to someone with dementia in residential care who wants to go home?’
For those close to people with dementia, how to respond to their questions can be a daily challenge. Is it acceptable to lie – ever? Or should we just tell the brutal truth – always?
How we respond will affect how the person and us feel and behave, now and in the future. We feel that if we get things ‘wrong’ we might damage a relationship that may well be already strained.
Why might a person with dementia ask difficult questions?
Difficult questions often arise when the person is living in a different reality and/or has different beliefs from those around them.
These differences may become more apparent as dementia progresses but they are not limited to the condition’s later stages. They include:
behaving as a younger version of themselves (time-shifted)
beliefs – sometimes strongly held – that are false to others (delusions)
unfounded suspicions or allegations about others (infidelity, malice, deceit)
experiencing things that aren’t there (visual hallucinations).
We need to understand that these realities and beliefs often have meaning for the person with dementia, and we should not belittle or dismiss them.
Rather, as with changes in behaviour, the challenge when supporting someone is to get behind the words, rather than attribute them as simply dementia ‘symptoms’. (Hallucinations in dementia with Lewy bodies may be an exception because they can be a symptom.)
For example, if someone with dementia asks for their dad, they may be expressing a need for comfort which is not being met.
If someone says they are setting the table for ‘guests’, maybe it’s because they are looking for something to do, or are using older, more familiar memories to make sense of the present. When someone with dementia invents a story, it may be a coping strategy to support self-esteem.
When someone with dementia unknowingly invents a story – which is called confabulation – it may be a coping strategy to make sense of the world around them.
Should you always tell the truth to a person with dementia?
Is it important to recognise that ‘truth’ and ‘lies’ are not always simple or clear cut.
A spectrum runs from ‘whole-truth telling’ through ‘looking for alternative meaning’, to ‘distracting’, ‘going along with’ and finally ‘lying’.
Guilt and dementia: How to manage guilty feelings as a carer
Feelings of guilt can be difficult to deal with as a carer of somebody living with dementia. Read our advice to help identify and manage guilty feelings. Feelings of guilt can be difficult to deal with as a carer of somebody living with dementia. Read our advice to help identify and manage guilty feelings. As we move through this sequence the level of deception rises and we feel less at ease; who likes lying to a loved one?
It feels uncontroversial that we would all want our default response setting to be telling the whole truth. But it is equally obvious that the whole truth can sometimes be brutal or cause pain or discomfort. Who would support telling the whole truth when a person repeatedly asks after a long-dead parent as if the parent were still alive?
The whole truth here could mean repeatedly breaking the news of the parent’s death as if it has just happened, over and over again. What could be more cruel?
Selecting the correct response to reduce distress
We instinctively want to lean towards the ‘whole truth’ end of the spectrum, but we also want to minimise any distress our response causes to the person with dementia.
But these aims often contradict, leaving us to seek a balancing act or a ‘least-bad’ trade-off. (We should not forget our own wellbeing either, as we don’t want to end up feeling bad about ourselves.)
One consequence of this approach is that we tell a direct lie only when doing anything else would cause the person significant physical or psychological harm. Professionals sometimes call this a ‘therapeutic lie’, but it needs to be seen a bit like antipsychotic drugs: used only under very select conditions and even then only with extreme care.
It’s also really important to recognise how hard this balancing act can be, and how impossible it can sometimes feel. This is true particularly if the person’s realities/beliefs fluctuate – for example, if they are time-shifted only some of the time.
Carers can often find themselves being unfairly accused or argued with, find that their own reality is being suppressed, or feel unnecessarily guilty if they occasionally get their response ‘wrong’.
What not to say to somebody with dementia
Words can be helpful and uplifting, but also hurtful and frustrating depending on the situation. Here, we look at some words and questions to try to avoid when talking to a person with dementia.
Words can be helpful and uplifting, but also hurtful and frustrating depending on the situation. Here, we look at some words and questions to try to avoid when talking to a person with dementia.
Responding to difficult questions from a person with dementia
Although every case needs taking individually, some guiding principles to start with include:
be compassionate
try to understand and acknowledge the person’s feelings
seek to reduce distress and promote wellbeing or happiness.
When a person with dementia thinks you have stolen from them
Let’s take an example of a person who believes you stole their purse, on the assumption that the person’s suspicion is unfounded and they’ve simply mislaid it and forgotten where it is.
Perhaps this has happened before and when you found the lost purse you returned it with a whole truth: ‘I didn’t steal it; I found it in a drawer where you put it’.
If this approach has caused an argument or distress, it may be better to try something less blunt next time: ‘It looks like it wasn’t stolen after all, it was just hiding upstairs’. If it’s a common accusation, trial-and-error can be useful in finding a suitable approach.
