A woman and man talking

When is it okay to lie to somebody with dementia?

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 isn't it, 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 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 which 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 simply 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 simply 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.

Truth and lying are not absolute

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 with 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 seems a common-sense 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.

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I care for my father who is in fairly late stage. Earlier this year we lost my mother who had copd. We haven’t told Dad that she’s gone and won’t be coming home so I have to tell him, many many times a day, that she’s visiting her sister.

I have always been as honest with him and it’s very hard for me tell him this. I know that it will break his heart and that in a matter of minuets he will for forgotten that’s I’ve told him that she’s gone and I’ll be back at square one.

My aunt had Dementia and latterly nursed in a nursing home. I honestly had no experience of Dementia so I was truly lost in how to cope with questions asked by her. She always asked when her parents would visit along with her brother and sister. After trying to change the subject I eventually explained they had died long ago. My Mum, her elder sister was in hospital and passed away, it was the hardest question to answer and she was hysterical when we told her and I wished to a certain extent that I hadn’t said but that wasn’t fair. I was trying to cope with my Mums passing and my head was all over the place. The staff said if she went to the funeral it would help in explaining, but come the day they didn’t let her go, no given explanation.
The difference in her when she asked if I remembered she had a budgie and I said yes, where is he? Someone took him to an aviary and she said good I’ll see him when I get home. Billy the budgie was practically attached to her and she dealt with it fine. Sadly she has passed but after a hospital stay she wanted home. The ambulance took her back to the nursing home the nurse said. Mary your home half an hour later she died. I have learnt a lot from the experience and was all over the place after my Mums traumatic time in hospital.

My wife believes that we have anot her house locally that is identical to ours in ever way. She sometimes confuses which one we are in. She frequently wants to go and, for eg, get clothes from it. Initially our GP told me to tell her how it actually is, but this gets her very agitated. We then we're advised to go with the flow but she then gets angry that I don't take her. I have tried driving her so she can show me where it is but that doesn't work. I am back to telling her the truth but its becoming impossible

Mum has dementia, she does ask about her mum, she died awhile ago, at the begining i did say she had died but now when she asks where she is i just tell her shes not here, mum takes it she is not where she is and say oh and carries on, so i am not lying just putting it in a way that could mean either. However i think deep down she knows her mum is no longer with us by a few things she says.

We have been forced to sell my Aunts home to pay for her care. I was advised by the memory nurse not to tell her. She doesn’t mention her home quite as often these days but it is vital that she still thinks it’s there waiting for her. I couldn’t dispose of anything, it felt wrong, so her whole bungalow is in storage for as long as she is alive. God bless her.

This blog has helped me feel better about a situation I had to face.
My partner died suddenly nearly 6 years ago. Her mother, who had dementia, was living in a home. My immediate reaction was that I had to tell her that her daughter had died. She had a right to know. But I quickly realised that if I did that she would go through terrible distress, then forget. (I’d seen this happen repeatedly at her brother’s funeral .) Would I tell her again, and repeat the cycle? I decided that to tell her at all would only be in order to uphold a principle that she had a right to know, and would only cause her, and me, great distress. This also meant that I didn’t see her again in the last few months of her life, as she only knew me through her daughter. She was visited regularly by other members of her family, and she never asked after me or her daughter.
I still hope it was the right thing to do.

My wife has Alzheimer's and has been fighting it for 9 years, but it now is having more and more effect on her. She was prescribed Galantamin initially and has been on the same dosage ever since. Not one bit of help has been offered to her, apart from what I have found out for her and the places she can go and socialise. What I would like to know is why there is no form of help as in cognitve rehabilitation or any other type of thing.It seems to me that after diagnosis it's a case of go away and don't bother us anymore. Then they plead no money to do things with , but they can allways find money for new submarines and aircraft carriers etc.

I used to feel really guilty if I lied to my mother when she asked difficult questions but I consoled myself in the knowledge that she wouldn't remember what I had said so it didn't count as a real lie.

Thank you for all the thoughtful advice. Good to see these posts which put care and kindness first in our rushing world!

Hello,
I've read some interesting messages. I only stumbled on this page.
Once A Person has been diagnosed with Alzheimer's Disease, What Is The Next Best Thing To Do?
To have Their Life's Dreams Taken almost immediately by Power of Attorney is Very Demeaning. Then after comes People treating Them like a Child. Why Is There Not Simple Guidelines that inform People on How To Act/Be/Talk around Alzheimer's Patients?
Their Time Of Absolute Consciousness Is Slipping away Fast. Why Not Help Them To Still Feel Capable. Who Knows if Practical Help May Bring More Self Awareness for Patients and Friends/Family.?
I've researched and not found any New Medicines That are Helping these People to Recover. Surely There Are Studies Going On With Experimental Drugs, Herbal Remedies, Should Not be ruled out.
Love Lies, Soft Lies are Fine but Surely To Keep The Person In Our World For As Long As Possible Should be the Goal? The Brain is Very Complex. Cells Can repair themselves or be repaired?
This Disease Is Kept Quiet Far Too much. LET'S GET IT OUT THERE AS VIP TO BE TACKLED. WE all sit back and Hope We Don't Get It.
Q. How Do We Get Dementia/Alzheimer's?
There Has To Be A Common Reason.
We Whose Brains Are Working Okay Need To Push To Get Answers. NOW.
NOW.

I am an only child with (no family) support of my own, although do have the support of friends, and have been supporting my Mum for nearly 6 years on my own since Dad died, although she is in a care home. Mum has been "round the houses" with her health in those years (after a lifetime of mental health problems), including being pronounced "end of life" 3 years ago by her GP, only to recover when taken off lithium sulphate, and given a dementia diagnosis ranging from Alzheimer's, to now assuming vascular dementia. Mum has recovered a lot of memory functioning since her end of life episode, but struggles at times, and can completely "misread" a situation. There isn't space to say what I want to here, but my biggest problem is reacting to her paranoid fantasies which kick in when something goes badly (mostly because she has never come to terms with being in care). I won't reinforce her view that it is because people "don't like her", by agreeing with her. I am becoming very wound up on a regular basis, including shouting at Mum in public, and am now having to seek counselling myself. I completely agree with reinforcing "pleasant" fantasies, but not reinforcing negative world views as it is not "promoting wellbeing" in my Mum.

My husband of 20 plus years has not been diagnosed with dementia. I have been considering seeking a diagnosis. As joint owners of a business in which he has been the intellectual force our small team is suffering from his diminishing skills but lacl of recognition of the fact. From reading all of the comments it seems there is no point In seeking a diagnosis. Continuing with my practical plans to extracate us both and retire at whatever cost seems to be my only solution in hope that removing the stress as he is unable to complete projects, in the field in which he is a respected expert, become beyond him. I am sad to hear that there is so little assistance we are in our 60s, this could be a long and lonely journey.

I care for a lady with dementia for the last 3.5 years. She seems to go through a cycle of violence similar to an abusive partner would. After she strikes out she calms down significantly. I was wondering if anyone else experiences this.

I had a partner, now passed, who quite frequently saw other non-existing persons in the room or outside in the garden. Sometimes she said these were her relations. At first I said I didn't think there was anyone there. These delusions did not seem to worry or threaten her, so I changed to saying they were there to see she was alright, or similar. Seemed to work. Might help someone..

With my wife I quickly realised that when told her Mother and Sister were long dead it was not the fact that they were dead that upset her but the fact that she had forgotten it.

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