Person-centred care validates the emotions of people living with dementia.

The Oxford English Dictionary has a lovely description of validation as "recognition or affirmation that a person or their feeling or opinions are worthwhile". For example, when someone is telling us a long story, we might nod our head or say mm along the way. When you think about it, you're doing this to show the person that you are listening and that what they say is worthwhile - and it also sends a message that the person themselves are worth listening to. That's a form of validating. We want to take that idea and 'dial it up' for people living with dementia.

One of the cornerstones of person-centred care is seeing the world from the perspective of the person living with dementia. We can recognise and affirm their feelings and subjective experience.  This can help us to understand why the individual is responding to the situation the way that they are, and what is being communicated (Brooker, 2004).

Jade's story

I was supporting a lady called Mrs Abbott, who was in the advanced stages of dementia.  

When my colleagues and I tried to move her on and off her bed for essential cares, she would hit, pinch and scream at us.  Everyone thought she was an aggressive lady.  

I wondered if she was frightened rather than angry.  

We took time to explain to Mrs Abbott about what was going to happen before we began to move her, and we kept giving her step-by-step information about what we were going to do all the way through. We stood so that she could see she was always well supported physically, and we made sure to avoid any big open spaces between her and the floor.  

You guessed it: no hitting, pinching or screaming.  Empathy and understanding the fear that she might have been feeling has gone a long way.

What do we see in Jade's story?
  • In Jade's story you can see how things changed when she looked at the world from Mrs Abbott's perspective.
  • From the perspective of the careworkers / kaiawhina there was nothing to be worried about, so Mrs Abbott's response seemed unreasonable and 'aggressive'. But when Jade looked at the world from Mrs Abbott's perspective she could see how scary it would be to have someone who seems to be interfering with you and putting you at risk when you don't understand what is going on - of course you would try to protect yourself! Mrs Abbott was communicating that she didn't  feel safe and was afraid. 
  • Jade could empathise with that, and help meet Mrs Abbott's need to feel safe.
Tip 1: Put on our detective hat
  • Sometimes we need to put on our detective hat to try to understand what the person might be feeling.
  • This is often easier when we get to know the person, and what has been important to them throughout their life. For example imagine Jade found out that Mrs Abbott is an ex-nurse who has always been in control - brisk in her job, particular in her house, and fiercely independent. This helps Jade to understand and empathise why losing control might be very anxiety provoking for Mrs Abbott.
Tip 2: Acknowledge rather than argue
  • Jade could have gone a different route where she told Mrs Abbott "don't be silly, there's nothing to worry about " and expected that to solve things. Reassurance is a really powerful tool. However, dismissing someone or arguing with them that they shouldn't feel the way they do is not great for anyone's self esteem or for the relationship! You can probably think of times when someone told you 'You'll be fine' or 'Calm down', and you felt shut down and that the person wasn't bothering to try to understand how you feel. Arguing with someone to persuade them that they are wrong can be frustrating for both of you - particularly when the person living with dementia may not have the short term memory or reasoning capacity to be swayed by your brilliant argument!
  • One of the first things Jade was doing was showing Mrs Abbot was that she understood what she experiencing from her frame of reference - that she empathised.
  • Sometimes we can do this by reflecting back what we think is going on. " That's really frustrating isn't it"; "You really miss Arthur don't you"; "We'd love to help you get up and freshen up for the day. I know it can be a bit scary when we use the hoist, but we are going to take really good care of you and keep you safe."
  • We want to connect with the person and their experience.
Wait, does empathy mean I should tell "white lies" to pretend that the person living with dementia's reality is true?
  • This is a common misunderstanding about validation. We aren't encouraging lying. 

  • Imagine Rewi keeps asking about when he can go "home", but he no longer has the home he means. It might be tempting for his caregiver / kaiāwhina to say "You'll be going home tomorrow" to buy them both a little peace. But this is a short-term band-aid. It doesn't address the underlying need that Rewi has, so it doesn't help the distress go away long term, and meanwhile it erodes Rewi's trust in his caregiver. We'll be looking at honesty in more depth in a later topic.

  •  It can help if we remember to follow the emotion - we can both agree that the emotion is real. 

Tip 3: See all behaviour as communication and help to address unmet needs
  • We can ease distress by focusing on the emotion. A great way to think about this is "all behaviour is communication". This means even the ones that upset us! As words fail, we may need to be able to interpret the language of behaviour as signs of unmet needs.
  • We all have the same basic needs, including people living with dementia. You can find out a little more about these here.
  • We want to get to the root of what the person might feel that they are lacking, so that we can find a way to help meet that need. 
  • Sometimes if the person can talk easily with us, it can help to try some questions that open up a conversation. We could ask Rewi what he would do when he gets home, or the best thing about home. This can give us some clues about what Rewi's unmet needs are. For example, if he talks about how spent a lot of time growing vegetables for his family, we may be able to meet his his love of gardening and his need to be useful by watering the pot-plants, or if he talks about the people at home we may be able to meet his needs by helping him to have an opportunity to engage meaningfully with someone. 
  • For people who are less able to talk with us, we must put that detective hat on to try to see the world from their perspective and what they might be feeling. You can see how Jade did this in her story. She used her insight into how Mrs Abbott might be feeling to come up with some strategies to try, and then looked to see if they made a difference.
  • This can be a bit of trial and error - we learn something every time we try something though. If at first you don't succeed, keep on trying!
Would you like to find out more about validation and looking at the world from the perspective of the person living with dementia?
  • You can read about using validation for some common scenarios (such as calling out, wanting to go home) here
  • You can read about using validation in advanced dementia here
  • Dawn Brooker and Isablle Lathem have a really useful book: Person-Centred Dementia Care, Making Services Better with the Vips Framework (Second Edition, 2015). 
  • Person-centred thinking about validation has been shaped by Naomi Feil's work from the 1960s onwards. She developed Validation Therapy which is a specific approach, we are talking about more general validation approaches (validation with a small 'v'!). You can find out more about Naomi Feil's approach here.

     
Take home messages
How do we know that we are working in a way that takes the perspective of the people that we are working with? (Brooker, 2015)
  • Communicating effectively: We can see Jade made sure that they were explaining to Mrs Abbott what was going to happen
  • Experiencing empathy: We can see that Jade looked for the emotion 
  • Monitoring the physical environment: We can see that Jade thought about the aspects of the environment that might make Mrs Abbott feel unsafe 
  • Assessing physical health: Jade checked that Mrs Abbot's responses weren't due to the moving causing her pain
  • Uncovering reasons for behaviors,: Jade followed through thinking about why Mrs Abbott might be responding this way
  • Being an advocate: Jade shared her insight with her colleagues so that they were on the same page in using the new way of doing things that worked better for Mrs Abbott