When is it okay to lie to someone 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, 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.

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75 comments

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Hi, I'm really struggling with what to say to my husband when he asks about his sister who passed away more than 10 years ago. I struggle because he asks me directly "is she alive".
A closed question that leave me no 'wriggle room' to respond. He is usually looking upset when he asks and I think that he knows the answer but can't make sense of it.
I cant keep confirming that she's passed away as his grief is so intense and lasts for hours.
He is asking at least once a week.
I just need help to formulate a standard and believable response. I'm finding that I am starting to get anxious anticipating this situation occurring again.
Thank you for your suggestions /advice

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My mum was diagnosed with Alzheimer’s vascular dementia last year which was initially put down to grief / depression following the sudden loss of my Dad in Aug 2019 after 54 years of marriage. Dad had prostrate cancer and mum had cared for him for 4 years.
I care for my mum alone with my husband and 2,teenage boys - my sister doesn’t live local so the majority of care is on my shoulders. I enjoy looking after mum and have changed my job to part time to be around more for her. I am currently considering anther career change to a caregiver so it will allow be the flexibility to take mum to her memory classes and COGS groups but my husband is worried this will be too much fit me - he feels I am making too many changes for mum and too much pressure on my shoulders.
Can anyone advise ?

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Hi Julie,

We're sorry to hear about your mum. It sounds like you're in a difficult position on whether to take on more caring responsibilities.

We'd recommend discussing this with one of our expert dementia advisers, who can listen to you, talk through your situation, and provide specific advice and guidance. You can call our Dementia Connect support line on 0333 150 3456. (More details, including opening hours, are available here: https://www.alzheimers.org.uk/dementia-connect-support-line)

You might also like to join our online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support. This could be a great place for you to get help and advice from other people who have been in similar situations: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

In the meantime, you may want to read our booklet, 'Caring for a person with dementia: A practical guide', which you can view online, download, or order by post: https://www.alzheimers.org.uk/get-support/publications-factsheets/carin…

We hope this helps, Julie. Please talk to one of our dementia advisers if you need advice.

Alzheimer's Society blog team

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IS IT RIGHT OR WRONG TO LIE TO PATIENTS WITH DEMENTIA?

I dealt daily with my Mom’s dementia for 7 years. There is no exact answer for “lying or not” with a dementia patient!!! There were times I told my mother the truth because I sensed knowing would ease her anxiety or anger. She was furious with my Dad and complained bitterly one day about his lack of consideration for going out and not telling her or leaving a note. (My Dad had been dead for 12 years at that point). When I told her Daddy was dead and we talked about him and I assured her that her husband would be right here with her if he were alive. She was comforted and calmed. There were other occasions, when I was out of town, and I would speak to her in the evening. She expressed loneliness and anxiety. It did no good to remind her that I had just been with her the day before because she could not remember. HER ANXIETY WAS RIGHT THEN. I would lie and say ,” I will see you in the morning “, even when I knew it would be three days before I could be with her. Keeping her calm and reassured was THE MOST IMPORTANT THING. I lied frequently when it was what would comfort her or calm her or keep her safe. I NEVER argued with her when she was wrong because it would have been as reasonable as arguing with a cocker spaniel.
My Mom lived her last years for the most part happy, or at least content. She did not have the problematic episodes of depression or combativeness or wandering; which is so common to Alzheimer’s patients. I AM CONVINCED IT IS BECAUSE I ADAPTED TO HER WORLD instead of trying to keep her in the “real” world - that was totally beyond her comprehension. I validated her worries and focused consistently on reassuring her that everything was OK. If she said,”I can’t remember”- I would say, “ It is okay, I remember and will tell you what you want to know”. Even if it meant I repeated A LOT! . I will not be convinced it was wrong and her gerontologist told me my Mom was a pleasure because, she was happy- a rarity in his practice.

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Hi Linda my mum is in her early stages of this, and I am so grateful for your post and for the practical point of view and suggestions that have worked so well for you. Thank you - I am optimistic that my mum's personality will be able to sustain us all, in the days ahead, when I'm going to have to return to your wisdom often, I fear. Optimism is certainly what I need right now.

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I have visited a lady with dementia recently with her son, he wanted me to go in 3 times a week. It didn't go well and she wss angry with her son for suggesting it. Now I'm visiting with hef daughter while she is staying with her mother. Her daughger asked me to say I am her friend, but what if her mother femembers me and asks if I have been before?

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Hi Bridget,

Thanks for getting in touch. It sounds like you're in a difficult situation.

We'd recommend discussing it with one of our expert dementia advisers, who can talk it through and provide advice and guidance. You can call our Dementia Connect support line on 0333 150 3456. (More details, including opening hours, are available here: https://www.alzheimers.org.uk/dementia-connect-support-line)

We also have an online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

We hope this helps
Alzheimer's Society blog team

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My dad has been diagnosed with vascular dementia and Alzheimer’s two and a half years ago. I’m that time he has mainly remained steady but lockdown has been hard for him. He listened to the radio every day and heard constant ads to stay in and stay safe and wouldn’t go out or open his windows. Prior to that I had been told by his on/off partner and some friends that he wasn’t washing himself or his clothes as well. He’s still in denial he has the condition and won’t accept help. As soon as we were able to we bought him to our house To join our bubble which he has been to numerous times over the years so knows our house well. There was lots I noticed apart from the clothes issue - he packed mainly dirty clothes, had 3 dosset packs of tablets he asked the same questions many times and in much quicker succession than I had seen before. I noticed definable good and bad days. Then the biggy he admitted to forgetting important things his address, where he is going? And how to open his front door. I then rushed around making phone calls to try and get him help and support and when they spoke to my dad he refused all of it. I was so angry with him even though I called him and we had an argument about it. I feel totally helpless that I know he needs more support in certain areas and because he said he’s fine and he’s fed up of people telling him what he should be doing he won’t get it. After that when I was due to visit him he called on the morning of it and told me he was ill and not to come down. This is not the first time it has happened and is always after I have called him out.

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Hi Nicola,

Thanks for getting in touch. I'm sorry to hear that you and your dad have been having a difficult time.

It sounds like you could do with some support, so please call our Dementia Connect support line on 0333 150 3456 or email us at [email protected]. One of our trained dementia advisers will be able to learn a bit more about your situation and give some ideas, advice and support.

Hope this helps, Nicola.

Alzheimer's Society blog team

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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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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..

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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.

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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.

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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.

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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.

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

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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.

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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.

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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.

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