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Not telling truth in dementia care 'should be last resort'

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Choosing not to tell the truth to a person with dementia may be justified in situations where it supports their wellbeing but should “not be taken lightly”, according to a new report by a mental health charity.

The Mental Health Foundation found there were varying degrees of telling the truth that could at times be acceptable but found certain practices – such as the use of artificial spaces like a painted wall depicting the seaside with sound effects of waves, or a bus stop where buses will not come – should be avoided.

“The choice to use an untruth in dementia care should not be taken lightly”

Mental Health Foundation report 

Similarly, rather than using objects such as dolls or robot seal toys as a form of therapy – as has been tested – having real animals and children around to spend time with would be more beneficial, it found.

The charity set up an inquiry in 2014 to look at what different versions of reality – such as when someone believes their home to be elsewhere – meant for people with dementia and whether “non-truth” telling by staff and relatives could be justified.

It found that different realities and beliefs experienced by people with dementia were not only symptoms of their condition but could be understood as way of using memory to make sense of a situation, as an expression of unmet physical, psychological, social or emotional needs, or as a coping strategy.

In a report published today, it identified a spectrum of truth-telling – including whole truth-telling, distracting, and lying – and some underlying principles in providing interventions to support people with dementia.

A “key role” of any practitioner is to find out what the meaning is behind the different realities the person with dementia is experiencing, according to the principles.

“Lies may only be used in extreme circumstances to avoid physical or psychological harm”

Mental Health Foundation report

“This is a fundamental aspect of good quality care, and should not be considered a luxury agenda item, ’if there is time’,” said the report called What is Truth? An Inquiry about Truth and Lying in Dementia Care.

Practitioners must have an open mind when exploring this meaning and use what they know about the person’s life story, personality and values, it added.

Staff should always provide interventions as close to whole truth-telling as possible, and should only move away from that if it would cause unnecessary distress.

“Lies – as in blatant untruths initiated by a carer or practitioner – as opposed to meeting a person with dementia in their reality may only be used in extreme circumstances to avoid physical or psychological harm,” said the report.

In addition, artificial spaces should be avoided, because they are designed to deceive, it said.

Responses and interventions should be kept consistent across family carers or staff teams, and what does and does not work should be documented and shared, according to the principles.

However, the charity acknowledged there were a range of challenges in providing interventions along the spectrum of truth-telling, including how to maintain trusting relationships, time pressures on staff, and the possibility of having to provide fluctuating responses to match different realities.

“Staff often find it simpler to cope with experiences of different realities and beliefs in relation to their own emotional investment”

Mental Health Foundation

According to the panel of healthcare professionals, academics and people with dementia that helped lead the inquiry, family members may struggle with telling untruths as it can feel as if they are doing something wrong.

However, it noted that “paid staff often find it simpler to cope with experiences of different realities and beliefs in relation to their own emotional investment, which is bound to be less”.

“The choice to use an untruth in dementia care should not be taken lightly,” said the report.

“There is always a balancing act between wanting to try to stay as close to whole-truth telling as possible and ensuring one is not causing unnecessary distress,” it added. “It is important to view the concept of untruths within the wider context of person-centred communication.

“Using this perspective, untruths can be seen as strategic therapeutic interventions. Their use is sometimes compared to use of psychotropic drugs in this area; for example, they should be employed with caution and only in situations where other approaches have been trialled first,” it said.

  • 6 Comments

Readers' comments (6)

  • The hardest part is when a resident continuously asks where their parents/spouse are, to repeatedly tell them that their relative is dead is cruel, causing sadness. When short term memory is less than 2 minutes it is kinder to use a white lie that they are probably in work/shopping/held up.

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  • I agree, also waiting for them to come home from work etc is their reality and to confirm their death time and time again makes the patient experience grief over and over again unnecessarily.

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  • So true. Sometimes it is better to be their world. The intention is not to deceive the patients, but to save them the grief of facing reality.

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  • My mother is 93 and has altzheimers, she doesn't know I'm her daughter and often states that my dad is decorating the bedroom, he's been dead 16 years. An understanding of their world view helps alleviate any distress for all parties involved. You cannot reason with these people because their reason and reality is distorted by disease so it's better for them if we delve into their world and play along. My mum loves her doll like it was her real child, just like it was once for me her real child.

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  • I have a lot of experience in this field and have found that often themed spaces or bus stops can be an excellent place for a person to sit and reminisce about past experiences. It gives great pleasure for a person to talk about things that they do remember, e.g. Bus trips. It also gives a restless person a signal that this is a place to sit and relax. As through out life, many people would relax at arrival at the bus stop. If your advice on "telling the truth" is interpreted literally, think how many times people with dementia will experience bereavement as they are regularly reminded of their partners death. I am very concerned that this advice will cause people with dementia nothing but loss in an already frightening world

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  • This is a particularly emotive subject. I agree with the notion that in some cases, telling the truth can be ultimately painful, and may have to be repeated over and again. In this case, perhaps the team and family can agree on a shared response that can best support that person.

    I believe that there are a number of differing approaches that can be employed when supporting people with cognitive impairment. One of these is 'reality orientation', which does not consist of bluntly informing the person that they are wrong, and their parents are in fact dead, but is a process of gently allowing a conversation to take place that validates the persons experience, whilst steering them back into the present reality. However, this is a skilled concept, and can only occur when you know the past history of somebody, and can use memory triggers to orient them back to time and place.

    This is a far more humane way of 'truth telling', which respects the persons lived experience, whilst validating the intense feelings of their moment. But it also requires informed and experienced staff, without time pressures, and a shared philosophy of person-centredness.

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