During this session we were all still getting to know one another and leaning about different views and experiences of dementia. Our goals for the day included:
- Understand person-centred care
- Understand the assets we have- and how we can optimise them and help each other
- Agree our homework and what’s next?
This is the programme we followed.
Re-cap on last session
We used the start of this meeting to re-state project aims, what we understood by ‘co-production’ (or working in equal partnership). We also shared: the Working Together Agreement the group had agreed at the first session; the ‘parking lot’ idea and red cards to highlight jargon/uncertainty or halt discussions to ask a question; and the group’s hopes and ambitions.
We went over the project timetable so people could see the trajectory of this work. Unlike our other group in North Lanarkshire – who were desperate to push ahead – this group seemed happy with a slower pace.
Last session’s homework
There is clearly no defined or agreed definition of person-centred care and support, with the 2014 Health Foundation publication ‘Helping measure person-centred care’ making the connection between this and the challenges in evaluating it. However, most agree that it’s about relationships between people. I also like this thought from Andy Crawford, Head of Clinical Governance at NHS Greater Glasgow and Clyde that ‘whatever ‘it’ is, it’s negotiated.’
At this meeting the group shared their homework from meeting one, discussing their reflections on what person-centred care and support means to them and what person-centred care and support should look like. Important issues raised in our discussion included that people valued support that focuses on what is important to them, that provides enough information and doesn’t try to ‘tell you what to do’. Group members had experienced good person-centred care but also shared examples of occasions when they didn’t feel they had been listened to or included in decision-making.
What’s Important to You (WITTY)
In order to encourage people to explore the idea of person-centredness, the group completed an exercise using a tool called WITTY.
WITTY is a tool designed to help people create a personalised visual map of what’s important in their life to promote discussion about their well-being. We asked people to work in groups of three and for one person to volunteer to complete the WITTY exercise, one to facilitate and support the conversation, and one to observe. The person who volunteered to complete the exercise was asked to place themselves in the centre of the circle and write what is important to them close or far away from them, based on their perceptions. For example, people may include other people in their lives on this map, their pets, social groups, places, activities and experiences that are important. Experiences could include: going to the football with friends, going for a walk by themselves or being pampered at the hairdressing salon. To create their maps people were given the option of writing on the paper version or using props such as lego pieces to represent what was important to them.
The exercise introduced the notion that personhood (McCormack, 2004), covers a number of aspects:
- Being in a social world – we are social beings
- Being in relation – we exist in relationships with other people
- Being in place – people have a context through which their personhood is articulated
- Being with self – being recognised, expected and treated as a person impacts on a person’s sense of self
Here’s what some of the maps people created looked liked. Interestingly, no-one chose to take up the option of using the lego pieces.
Following the exercise we asked people to feedback on how they found the exercise. People said:
- I enjoyed it
- I need to do more! Impressed by all the things that others do
- Helps identify what makes you tick – and how things relate to each other
- Money is important as are neighbours and family
- Things can move in terms of what’s important over time
- We had conversations together
People also discussed that the question ‘What matters to you?’ is different to ‘What’s the matter with you?’ as the latter question has too much emphasis on a problem, ‘What matters to you might be nothing to do with your health’, however it was also noted that the positive variation of this question ‘Makes you realise what’s gone or missing’, and so there needs to be some sensitivity around the timing and support given to people when having these conversations.
WITTY was developed as part of an IRISS project called ‘Social Assets in Action’ An app was developed so this approach can be used on an iPad and an online tutorial created to support the use of this approach.
In this discussion the group explored what we might mean by ‘assets’. People identified their own personal assets such as: providing an income to pay the rent/mortgage and put food on the table, to having or imparting knowledge, fostering skills or enthusiasm for hobbies/interests to children and grandchildren. They also included having time (a very valuable resource), useful connections and networks to draw in other help, as well as personal attributes such as good organisation, patience, peacekeeping skills, determination, resilience, ambition and hope. It was about loving and caring for family members. The group agreed that this discussion had highlighted that people can have very different assets (as well as shared ones).
The power of personal stories
If we aim to provide more person-centred care and support and continually learn and improve, the power of personal stories shouldn’t be overlooked. Stories make no apologies for being subjective. That’s their power. They connect us to one another.
‘Stories are how we remember, we tend to forget lists and bullet points’. We might argue the art of storytelling and listening is at the heart of what it is to be human and how we articulate and make sense of the world.” (Robert McKee, a screenwriter and lecturer)
In order to explore the power of storytelling, we chose Dr Helen Popovic’s story about caring for her father Ilija who has vascular dementia. We read this story to everyone and asked people:
- How did it make you feel?
- Is it useful to hear stories?
- How can we use them?
The group felt that the story was rather depressing and they couldn’t easily relate to the life experiences being portrayed. Helen and Ilija lived in Australia and it seems, we got it wrong in choosing someone who lived on the other side of the world, as people focused on this rather than the more common human elements of the story. This meant we didn’t talk about (as had been anticipated) how stories might provide comfort, connection, support, hope or offer valuable criticism of current systems that we could learn from. Perhaps we really needed Helen or Ilija in the room.
Having said all of this, there is evidence of the value of personal storytelling as a way to improve practice. Read the relevant IRISS insight The role of personal storytelling in practice or visit our bank of stories which includes a section on people living with dementia.
These are some of the points raised in the IRISS Insight identifying why storytelling is valuable to practice:
- Not only does it places the person at the centre, it adds a richer dimension to our understanding…
- It also engenders empathy – helps put you in somebody else’s shoes and reminds you why you do what you do as a practitioner
- Encourages reflection and helps us reconnect to our values base
- Is memorable and stirs emotion – and as such supports learning and development
Moving views on ideas forward
We discussed some of the ideas the group had explored at the first session and asked them if they wanted to take any away, add to these or edit/amend anything. This was to make clear that decision-making power lay with the group. However, it was also made clear that nothing was fixed at this time and these would be re-visited after further exploration. We had still to map out what we had in the community as a group, and didn’t expect that we would have exhausted all possible ideas so early.
We asked them to discuss the ideas and then rank the ones they want to proceed with. Every person was given four voting dots to put against their favourite ideas. People could put more than one dot on something if they wished.
The winners were:
- We want more local information (bringing together our own resources) on the range of services and support, including for carers, knowing the ‘right’ people to contact (15 votes)
- We want access to more information and research about dementia so we know what to expect (visit to Stirling Dementia Centre suggested) (14 votes)
- We want to support learning through sharing experiences, so people with dementia, family members and carers are at the centre of shaping care and support (at these sessions; in other places identified by group members) (11 votes)
- We want people with experience of dementia providing training (10 votes)
- We want to share our learning and recommendations with those who can influence change eg local MSP and health and social care budget holders (9 votes)
Group votes for favourite ideas
Other ideas receiving fewer votes included:
- We need different ways to access information (not just leaflets but the chance to ask questions and discuss – input from carers groups and visits to dementia cafes suggested) (4 votes)
- We want positive risk taking so we can keep true to what matters to people (3 votes)
- We want to improve people’s confidence to be able to challenge professionals (3 votes)
- Personal outcomes training for staff (3 votes)
- How do we reach the hard to reach (those without a diagnosis of dementia and those who have a diagnosis but don’t engage with support) (2 votes)
- We want to know more about what self-directed-support is? (0 votes)
Homework
Everyone was given a choice, informed by discussions from meeting one, from the following list. We asked people to report back at the next session on what they learnt and how this could be useful to them and others:
- Visit to Stirling Dementia Centre
- Go to a local Dementia Café or local singing group –dates and details provided and name of someone to welcome them on arrival
- Identify a half-day professional-professional shadowing opportunity to ‘stand in someone else’s’ shoes’ (with IRISS happy to help broker this).
- Choose your own idea.
Options one and two proved the most popular with it agreed that IRISS would help co-ordinate the trip to the Stirling Dementia Centre with the help of the three link workers who volunteered to drive.
Evaluation and feedback
As with all meetings, we asked at the end for general feedback. People are given smiley faces, not so sure and unhappy faces to hold up. We got all smiley faces with the exception of two ‘unsures.’
What went well?
- Breaks (more of) and food (had a hot sit down lunch together in café downstairs with choice from the menu-selected at break time; more relaxing and felt like a proper break) – better than last time as didn’t have to balance sandwiches and soup on knees!
- Length of sessions was good
- Like working in small groups of four – make up of group depends on activity but good to mix up people with dementia/carers with professionals – and also separate carers from partners with dementia (depending on exercise)
What could have been better?
- Opportunities to be in different groups from your spouse/breaking up couples (people with dementia and carer)
- Some wanted to try a different ice-breaker
What will you take away from today?
- Feel we’re part of a friendly group where we can talk (openly)
- Relaxed
- Like the visual elements of WITTY
- Some agreement building – but also liked that people could raise issues/disagree; seen as a positive thing.