Person-centred care includes being genuine and trustworthy.

What does it mean to tell the truth when we are speaking with people with dementia?  And why is this an issue? Being known as a trustworthy person who can be relied upon to tell the truth is seen as a good thing.  It’s what most of us were taught as kids.  But as we grow up we discover things aren’t quite as simple as it seems: might it sometimes be OK to lie if that will make someone feel better?  Might it sometimes be OK to tell some but not all of the truth if that will protect someone from getting needlessly upset?  People sometimes call these “little white lies”.  The question for us is whether this is OK in our dealings with people living with dementia.  It would be fair to say that two different people who are both good dementia care workers could hold very different opinions about this.

Maia's story

I was working with a woman, Dorothy, whose husband had to go into hospital suddenly, where he sadly died.  She would often ask where he was.  

We tried supporting her with the truth as gently as possible but each time she heard it, it was like the first time and she got so distressed.  

In the end, we agreed that we would say “He’s OK now, he was very sick but he’s not suffering with that anymore.”  It turned out that what she really wanted was to be sure that he wasn’t having an awful time of it.

What do we see in Maia's story?
  • Maia and her team started from a point as close to whole truth telling as possible.
  • Maia's approach was underpinned by respect and kindness.
  • Maia wasn't thinking about what made things easier for her as a caregiver, she was focused on the well-being of Dorothy. 
  • Maia and her team tried to understand what Dorothy's frequent questions about her late husband might mean.
  • Maia and her team avoided blatant untruths.
  • The responses were kept consistent across the team.
Thinking about truth

The UK Mental Health Foundation has published a report called "What is truth: An inquiry about truth and lying in dementia care', where a panel listened and thought about this issue. This is a very useful basis for our discussion.  

Here are some examples of when our 'truth' may be different than what the person living with dementia believes

  • Not remembering that someone has died, like Dorothy in Maia's story
  • Finding comfort in looking after a baby doll that the person seems to believe is a real baby
  • Asking to go home or believing that they are somewhere different than where they are
  • Believing that they are being useful in a previous role
  • Believing that someone is stealing from them, shifting things around, or coming into their room 
There isn't one simple answer about how we can approach whether we should tell 'the whole truth' to best support the well-being of people living with dementia  - the situations and people will be different.
 
Let's start by thinking about a situation like Dorothy's where the person is distressed because they don't understand why a a person who has died isn't there with them and is repeatedly asking for them. 
Tip 1: Consider a gentle pace for the whole truth
  • Sometimes a gentle pace and approach can help a person living with dementia to adapt to ' the whole truth'.
  • We can strive to tell the truth in a kind way, we pace what we say carefully so that people are not overwhelmed with more than they are ready to bear, and we support people through any reaction they might have.
  • An example is another widow, Nora, who was distressed about her missing husband John. When this happened a staff member would gently take Noraqy aside and they would look through her photo album together. They would talk about Nora and John's life together and what a beautiful funeral Nora and her family had organised for John.
  • Over time Nora felt things fall into place, and became more at peace and stopped searching for John.
  • This approach is different than rigidly insisting on "correcting' the person about what is true, that could be be distressing and make the person feel bad about themselves- or us. 
  • This approach wouldn't work with everyone, and we can see that from Maia's story. Maia and the team found that trying to gently break the truth repeatedly created unnecessary distress because Dorothy was not able to retain the news of her husband's death. 
  • Imagine a situation where the person has  hallucinations and/or delusions.  For example, how do we react if a person says that the gang members are coming into their room at night and injecting them with drugs?  Trying to persuade them of the truth can pit us against each other and descend into an argument neither “side” can win. We can accept that the person's emotions are real, and respond to that. 
  • For Nora however, the staff were table to find an approach that helped her work through her negative emotions to help her well-being in the longer term. They could support her to grieve. 
Tip 2: Look for the  alternative meaning 
  • In Maia's story, the team realised that Dorothy was worried about her husband suffering. This meant that rather than correct Dorothy's belief about her husband on the one hand or making up a story pretending he was alive on the other hand, they could respond to this meaning, and  provide reassurance.  
  • Sometimes we can engage with the person to help us understand the meaning, for example when Dorothy is asking for husband, we might ask if there was something she wanted to ask her husband? Could I help? 
  • We might prompt Dorothy to talk about her husband and listen for clues if there is some thing that she is feeling or missing that we might be able to help with in other ways.
  • The more we know about the person the more likely it is that we can work out the meaning.
 
Tip 3: If these approaches don't work, distraction might help as a temporary measure
  • Distraction has some limitations in situations like Dorothy and Nora's because it doesn't validate their emotions, or address the underlying cause of their distress.
  • Sometimes introducing a new setting or topic or meaningful activity can help, for example if Dorothy isn't calm enough to respond to these other approaches at the moment, or they just haven't helped this time.
  • We can introduce something we know is positive for that person, for example if we know that Dorothy loves flowers, we might invite her to come with us outside to see the lillies that have just come out in the garden.
  • These are all alternatives we can try before we turn to an untruth like saying that Dorothy's husband will be coming to visit later.
Tip 4: We can meet people in their reality in different ways
  • Sometime the difference from our truth can be a positive thing - when someone's face lights up when caring for a baby doll, or when someone is proud of the way that they have helped at their 'office'.
  • We want to meet the person living with dementia n their reality rather than contradict it.
  • Some people try not to contradict the person's reality while also avoiding saying things or creating environments that set out to 'deceive'. We saw this in Maia's story. She carefully chose a response that met Dorothy in her reality where her husband was still alive, but didn't pretend that he was alive. This is the position that the "What is truth' panel took. 
  • Other people want to support the person living with dementia in their positive alternate reality - for example having a fake bus stop to wait at to 'go home', or engaging in conversations about 'going to work'.  This type of approach is sometimes known as 'therapeutic lying' .
  • We need to think about our own moral viewpoint, and also what the team approach is where we work. If you are working as part of a team then it will generally be less confusing and more 'trustworthy' for an individual if a similar first-line approach is taken consistently by the team.  
  • We also need to be prepared to try something out and change our strategy if it doesn’t work as intended. 
Would you like to find out more about being genuine and trustworthy?
  • You can read the "what is truth" report here
  • You can read a brief discussion from SCIE here
  • You can see a picture representation of the range of responses from whole truth to therapeutic lying here.