Person-centred care invites people to participate

Many people living with dementia say that they want more choice, influence, and control over decisions about their life and the support they receive. A big barrier to this happening is an unintentional attitude that the person living with dementia is just a passive recipient of care. The gradual erosion of control that many people living with dementia experience means we need to create more equal relationships (Bray, 2018). We can do this through inviting people to participate in their own care.

Sanjay's story

I think one of the most person-centred things we can do is not to wake our residents up in the morning.  

We let them wake up naturally and take it as our job to invite each person to join in with getting up and dressed once they have woken up.  

At the very least, they are more wide-awake and can participate in activities better!  

It sounds simple, but our people are happier, less aggressive, and go through their morning routines so much better.

What do we see in Sanjay's story?

Sanjay provides us with a lovely example of how offering an invitation to participate can move us away from a task orientated approach

  • Sanjay is focusing on the well-being of the real people and how they experience the morning, not on his list of tasks that need to be done to ‘bodies’.
  • Sanjay is offering choice and negotiation, rather than saying “take it or leave it”
  • Sanjay is “doing with” rather than “doing to”
  • Sanjay is getting know the people and their preferences
  • Sanjay’s approach feels warm and respectful.
  • Sanjay’s approach is taking the battle out of the morning!
A special charter of rights
  • Janusz Korczak was an extraordinary doctor and educator who was a pioneer of children’s rights. He set up an orphanage for Jewish children in Warsaw, and in 1942 he chose to accompany the children in his care when they were sent to Treblinka death camp.
  • Almost 100 years after Dr Korczak wrote his list of rights in the 1920s, Jiska Cohen-Mansfield (2021) visited a memorial to him. Dr Cohen-Mansfield was struck by how useful Dr Korczak's ideas are when we are thinking about our support for people living with dementia. Dr Korczak's list overlaps with person-centred care, despite writing many years before we knew that term! 
  • Let’s look at some of these rights and how looking for opportunities to invite the people we support to participate might help us to embody them.
Tip 1:  A right to love and appreciation
  • Inviting the person we are supporting to participate can help create caring social interactions and show that we appreciate them. 
  • Think about inviting a friend over for dinner. Our invitation to dinner is not just about offering food, we are offering our company and enjoying their company. Even in our most formal invitations to social events such as weddings, we use phrases like “request the pleasure of your company”. 
  • This can be an important thing to convey in our invitation to the people we support– we are looking forward to doing this together and we will enjoy their company. 
  • When have you seen someone with dementia being invited to participate in something as if they were a respected person whose presence would be valued, versus being a customer or consumer of health services who is told ‘take it or leave it’?
Tip 2: A right to an optimal environment

An approach that offers invitation to participate is proactively helping to provide an environment that offers the person living with dementia

  • companionship and caring 
  • meaningful activities to prevent or reduce boredom, 
  • a sense of dignity in care, 
  • and support to retain their abilities as long as possible (Cohen-Mansfield, 2021).
 
Tip 3: A right to respect
  • If you wanted your boss to do something, would you just tell them that they have to do it? Probably not, because that would seem disrespectful. You would ask.
  • In the same way inviting a person living with dementia to participate can feel more respectful of the person we are supporting.  
  • Sometimes people can react badly to being told what to do. They may be more likely to say yes to an invitation than they are to a ‘command’.
  • When have you seen people with dementia being expected to do something and to do it now? “Come on, it’s time to get out of bed. Up you get” is not an invitation! 
  • We can see that Sanjay is able to show respect to the people with his invitation to join in getting up when they are ready. Things go better.
Tip 4: A right to be themselves
  • We would want our physical environment of where we live to reflect who we are, The same is true for our support. We want to create a care environment that feels comfortable and reflects the person living with dementia’s individual preferences and personality. 
  • We could see how Sanjay's approach helped the support in the morning shift to reflect the resident's routines and preferences.
  • When we invite people to participate it can reinforce their sense of self, for example by continuing to do familiar things, have control, talk about and do things that are meaningful to them, and feel useful.
  • You might have had an experience when you were at primary school of being so proud to be given a job to do. How did you feel - responsible, grown-up, important, part of a team? It was probably a boost to your self-esteem! Yet when you look at the task now, it may seem like a very simple little chore. It’s not the size of the participation, it’s how it makes people feel. 
Tip 5: A right to desire, to claim, to ask
  • Sometimes the pressures of the day mean we are reduced to just thinking about what we think people need and the task to be done. 
  • An invitation can be a chance to listen. 
  • We want the person we are supporting to feel able to openly express their opinions and wishes without fear of being judged or dismissed. We want them to feel listened to and understood and that their views are respected and heard (Alzheimers Society Canada, 2015).
Tip 6: A right to mistakes and a right to fail.  
  • We never actually know what a person has in them and are able to do unless we give them an enabling space and opportunity to try -  inviting them to participate is one way to do this.
  • Sometimes they might fail. 
  • We have to weigh up what is the harm and the actual risk, and who is it a risk to. We need to walk in the person’s shoes, not our own – our worries might not be what distresses the person. The risk to the person to not have these opportunities might be much greater. 
  • We can think about managed risk, and how we can break down some of the barriers. 

 

Tip 7: A right to self-determination.
  • Using an approach that invites participation in our say-to-day work can help to maintain self-determination. What does self-determination or autonomy mean to people living with dementia? 
  • It means maintaining their independence and self-expression as much as possible (Wolfe et al., 2021)
  • It  means accepting help but being included and having opportunities for connection (Wolfe et al., 2021). 
  • It means that other people don’t just assume that they can make decisions for the person living with dementia in their life and their care (Döpp, 2021).
  • Inviting people to participate is part of making sure that the person living with dementia is able to influence what happens and make decisions.
  • Looking for ways to offer choices to the person living with dementia can be an invitation to participate and make their own decisions, for example, when a care-worker holds up two shirts and says "Would you like to wear your blue shirt or your green shirt today" .

 

Would you like to find out more about invitations to participate?
  • You can read more about how to help people to 'do' and participate here
  • You can read Jiska Coen Mansfield's article where she reflects on Janusz Korczak's list of rights here
  • You can read more about Janusz Korczak here.