Tim Beanland, Head of Knowledge Management at Alzheimer's Society, discusses the difficult choices and situations around lying to a person with dementia to protect their feelings.
I try not to lie, honestly, but some things push the boundaries: “Socks! You shouldn’t have”; “No, I'd love to have your mother visit” and – often to my subsequent regret – “But I've only had one drink all evening”.
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 to me... but who are you? (Person to their partner)
- Why have you stolen my purse? (Person living in the community)
- Who are those little people by the window? (Person could be living anywhere)
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. If we get things wrong we can erode the foundations of a relationship that may well be already strained.
Why might a person with dementia ask difficult questions?
The Society contributed to a 2016 report by the Mental Health Foundation which addressed this topic. A key conclusion was that these kinds of 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 if 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)
- seeing 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 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.
Should you always tell the truth?
One of the strengths of the report was recognising that 'truth' and 'lies' are not as simple as black and white.
A spectrum runs from ‘Whole-truth telling’ through ‘Looking for alternative meaning’, to ‘Distracting’, ‘Going along with’ and finally ‘Lying’.
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 a ‘brutal’ truth. 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 afresh every time. What could be more cruel?
Selecting the correct response to reduce distress
We instinctively want to be 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 it supports a direct lie only if to do everything 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: use only under very selected conditions and then with care.
It’s also really important to recognise how hard this balancing act can be, particularly if the person’s realities/beliefs fluctuate – for example, they are time-shifted only some of the time.
Carers can often be unfairly accused, find that their own reality is being suppressed, or feel unnecessarily guilty if they occasionally get their response ‘wrong’.
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 someone thinks you have stolen from them
Let’s take the ‘stolen’ purse example, on the assumption that the person’s suspicion is unfounded and they’ve simply mislaid it and forgotten where.
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: ‘Sorry it took a while but it’s here: it was hiding upstairs’. If it’s a common accusation, trial-and-error like this is a useful approach.
When someone asks about a deceased love one
If you think the person needs comfort or assurance, then ‘Is there something you wanted to ask them?’ might work.
The person with dementia may just want to reminisce about their partner, you could try saying something like, ‘I can tell you really cared for each other – tell me about them’, perhaps reinforced with personal photos, letters, or objects. As so often for someone with dementia, listening may be better than talking.
Or it may be that the person with dementia is still grieving, in which case gently acknowledging that their partner has died and supporting them to grieve might be best – for example by talking about their relationship and the person’s life.
But if the question here is frequent and the grief severe, then the humane response is likely to be to acknowledge the person’s feelings and gently move them on to a topic or activity that you know they will enjoy. This is clearly ‘distraction’ but it should still not deny or ignore their feelings.
Get support and advice
This blog post covers a lot of difficult issues. If you'd like further help or advice you can call the Alzheimer’s Society Support Line on 0333 150 3456.
To see how others have dealt with these issues, and share your own tips, visit our online community.