There have been three outputs from the KiP: dementia project. Two dementia cafés and a café for carers of people who have dementia. The project group included five people with dementia, five carers, and eight professionals with a health or social care background.

Dementia cafés

In North West Glasgow the group has set up a dementia café in Drumchapel. This café has run four times since October 2014 and the number of people attending has increased each time. The café has dates confirmed for the next six months. The idea was developed and is being supported by a sub-group including practitioners, carers for people who have dementia and people with dementia. One carer from the North West Glasgow group explained that as a consequence of being involved in this project she ‘can make things happen’. She has therefore been inspired to set up another dementia café in Partick, where a need was also identified for this kind of support.

The number of people who attend each dementia café is approximately 26. The cafés are run by the carers from this project. Their partners and family members who have dementia also attend. Link workers who took part in the project are introducing new people to the cafés each month.  A carer described the welcoming atmosphere in the café as like ‘getting a hug when you walk in the place’ (carer) as the atmosphere is ‘so welcoming’, ‘friendly’ and ‘there is good banter’ (person with dementia).

The carers who run the cafés are in the process of developing the infrastructure to support their continuation. Currently, the cafés are being held free of charge in COPE in Drumchapel and the Annex in Partick. These environments have been described by the carers as ‘perfect’ and the people who run these organisation as supportive ‘can’t do enough for us’ (carer). However, the ongoing use of the COPE venue is dependent upon its funding being renewed. Having researched locations, the carers who run these cafés are aware of the difficulties in finding a good, affordable location suitable for people with dementia. Everyone who is involved in these cafés hopes that COPE’s funding will be renewed to enable the continuation of this dementia café.

At the cafés, carers provide tea, coffee, cakes and biscuits and sometimes activities and raffles. Donations are requested to cover tea and coffee. Raffle prizes are donated by people who attend and the money raised from the raffle is donated, for example, to Alzheimer’s Scotland Dementia Dog campaign. Carers are presently seeking advice from NHS Greater Glasgow and Clyde about opening a bank account for the cafés and exploring how they can be supported financially by public services. Dementia link workers employed by the NHS and Alzheimer Scotland are signposting others to the cafés and where appropriate, supporting people to attend. IRISS has gifted £250 to support the expenses of each café.

Drumchapel Dementia cafe flyer

Carers’ cafés

One carers’ café is running monthly in COPE, Drumchapel, North West Glasgow. The café has been running for four months (Dec 2014 – April 2015) a small number of carers, currently around 12, attend. The group is in the process of deciding whether to grow or remain small. This will depend on the needs and preferences of group members.

The café is a safe space to share experiences of caring for a loved one and to support each other. Carers described ‘feeling brighter’ just knowing there is a safe space for them to go and talk to other people ‘who know what you are going through’. Particularly when they have a small family, possibly no children, and do not know anyone else in a similar situation. ‘It gets you out of the house‘ and can be a space that is ‘not all about dementia’. People talk about various topics, and there is a ‘lot of laughter’ as well as some needed and supported tears.

Currently the cafés are being held free of charge, with an optional donation to COPE for use of the room. IRISS has gifted the carers cafe £125  towards the use of the room until the end of 2015. At the cafés, carers provide tea, coffee, cakes and biscuits. Staff from the local carers’ centre who took part in this project are also in contact with the carers who attend the café to offer support, training and care relief when needed.

Group members Eileen and Jane

Contributing to the debate: the value of unpaid care

Some of the experiences of carers involved in the group were also captured in a short video by facilit-e46 for the PPHW.

 

This brought their lived experience ‘into the room’ as part of a participatory debate: Does Care Get the Value it Deserves’ held on 25 June 2015  at the ALLIANCE’s Citizen Wellbeing Assembly.

This included speakers from Independent Living in Scotland and the Coalition of Care and Support Providers in Scotland (CCPS) and raised a number of issues around identity (self identity and view of others), how we value care in society.

Thanks to all our KiP carers for contributing to this and their continued work and efforts!

This was the sixth and final meeting. As Kerry (Project Manager on this project) had now gone on maternity leave, I (Gayle) facilitated this session with Rikke.

At this workshop we fed back what had happened when people tested their ideas in practice. We shared our interpretations and discussed what people could do next to further develop their ideas. We concluded by reflecting on our work together and celebrating, with some cake. See our programme.

Our goals for the day were:

• Working groups to provide progress reports on improvement ideas
• Action planning for testing out improvement ideas
• Measuring impact of improvement ideas
• Agreeing  next steps

Connecting up

As everyone knew each other well by this point, and there had been quite bit of activity since the last meeting, we moved straight into giving the groups space to reconnect. Groups discussed what they had been doing, what they had found out and what they were thinking in relation to their idea. At the end of this conversation we asked each group to share reflections and learning with the wider group. The following questions were provided as a guide to help structure this feedback:

• What happened?
• What worked well and why?
• What didn’t work and why?
• What is your group’s plan for the future?

We also gave groups a retrospective evaluation sheet that they could use to guide their conversations.

Progress reports from each working group

Since the last meeting people had met up to take their actions forward and feedback to others.

Group 1

Idea: Run a new local dementia café fortnightly

Since the last meeting, the first dementia café had taken place. Afterwards, the group met at Jane’s house and reflected on what worked well and what needed further development. At this meeting, people decided that instead of running the café fortnightly, it would run monthly. More frequent cafés were felt to be too demanding in terms of fitting in with other commitments and the travelling involved.

COPE was chosen as a suitable venue where staff were particularly helpful, ‘and the people who work there have made it so easy for us’ and they are ‘able to give us everything we need’.

Other locations were unsuitable because they didn’t respond to the group’s inquiry, were too big or cold and/or too expensive. It was recognised that the venue needed to cost ‘close to nothing‘ and that COPE as a charity, only requests donations for use of the venue. Another positive aspect of the COPE venue was the environment – comfortable chairs that recline and the offer to everyone, of a ‘fluffy blanket’. Additionally, COPE runs other events that the café has been invited to get involved in, for example, head massage and singing sessions.

There were signs that word was spreading about the café.  Link workers were talking to people they supported and sharing information through their work base, the GlenKirk Centre. Local GPs were also now aware of the café, as were social workers linked to dementia services.

Sunny Govan Radio was planning to attend the café the following week and report on what the group was doing. With all this far reaching communication maybe it wasn’t surprising that someone suggested ‘maybe we don’t need to hand out the flyers’ (which the group had also developed between meetings),  there was a worry that too many people might attend.

At the café a raffle was held and carers donated prizes which raised £100. The group was in the process of deciding whether to gift this money to other charities (such as Alzheimer Scotland) or save it and put it towards a trip in the summer.

People were reluctant to set up the cafés as charities, as it was perceived to be ‘too much paperwork’ and not necessary as ‘people trust one another’. However, some group members raised questions about the legal status of the group and there were offers of help to explore this from the Carers’ Centre. Setting up a dedicated bank account was suggested as an idea that might take pressure off individuals.

There had been discussions around transportation to and from the café. It was decided that this should be the responsibility of the people who would like to attend. It was also recognised that the purpose of the café must be clear, in particular, that it wasn’t a substitute for day care.

Generally this group was ‘not really surprised’ at how well it was going and how quickly things were developing. People felt that everyone was working well together and sharing responsibility for developing the café idea.

Group 2

Idea: A new local carers’ group that is confidential and not run by ‘experts’

The carers’ café had also been spoken about at Jane’s house and had also run a first session. At the first meeting, the group decided that they didn’t want this café to get too big and that it would remain an informal space for a group of carers to relax and talk together. Twelve was considered to be the maximum number of people they would like in the group. If more people were interested, another group would need to be started.

The first session had included both carers and people with dementia. At the next group it was decided that only carers should be included.

The connection between the dementia café and the carers group was seen as useful for both groups.

COPE has also been used as a venue for the carers’ café as it has been so successful at supporting the dementia café.

Group 3

Idea: Developing volunteer/ befriending service

This idea was not pursued (see session 5). Group members supported working groups 1 and 2.

Developing an evaluation strategy

The purpose of this activity was to encourage the groups to consider how they would gather evidence about the progress of their ideas. This might help them access support to further develop their cafés and could also contribute to evidence of the longer term impact of KiP.

Group 1

Idea: Run a new local dementia café fortnightly

The group had a visitors book which was full of positive comments. A group member explained ‘people are coming back, so we are doing something right‘. People described the atmosphere of the café as ‘warm‘ with lots of ‘good laughs‘ and the opportunity ‘for a natter‘. It was suggested that it would be useful to keep a record of the number of people who attend each café.

Group 2

Idea: A new local carers group that is confidential and not run by ‘experts’

Rather than evaluate this work, this group is at a stage of trying to raise awareness. Therefore, future plans include ‘keeping going‘ and creating flyers ‘to spread the word‘.

 

Discussing how these ideas will be developed after the final IRISS hosted meeting

People in the group already felt ownership of the ideas they had developed and were unsure whether and in what form they would like continued support from IRISS. The experience of designing and running their cafés had given people a clear idea of how they wanted to continue, which was reflected in their approach when evaluating/further developing this work.

Group 1

Idea: Run a new local dementia café fortnightly

The plan for this group was to ‘just keep going’, as through word of mouth and the flyers, the café was getting bigger each time. There was also an idea to develop another café in Partick.

Group 2

Idea: A new local carers group that is confidential and not run by ‘experts’

This group wanted to develop the carers café. They planned to print out and share more flyers within the local community. An idea was discussed to develop a ‘how to guide’ that could support other carers to set up up their own cafés.

Those involved in both the dementia and carers’ cafés were aware of the risk related to their venue (COPE’s) funding. They recognised that they could have a role in providing evidence to help COPE demonstrate the need for continued funding for this venue.

Individual reflections on the project

As the project had taken place over a year, we started by asking people to reflect on their perceptions as the project progressed. We did this by printing out each of the blog posts describing the activity at each session and posted them up on the wall so that people could review them and take some time to recollect their thoughts.

< Reviewing previous KiP sessions

Group reflections on the project

After people had taken time to reflect on the work they had done and their experience of KiP we sat together in a circle and talked about:

1. What do you think about the work you’ve been involved in?
2. What has your experience been like?
3. What have you learned?
4. If you were to do this work again what would you do differently?
5. What may you do differently as a result of being involved in this project?

To support people who have dementia we also referred to the blog posts on the wall and laid adjectives and words related to emotions on the floor to support and prompt and people. (This uses an emotional touchpoints approach.) This group reflection offered people the opportunity to share their thoughts with others in the group and to spark ideas and conversations. Some direct responses to these questions can be found in the section people’s hopes and experiences of this work.

Other feedback was gathered by speaking to people individually.

The final Evaluation Report combines these findings.

Reflecting on experiences of KiP

Celebration!

We concluded this meeting with a party, cake, music and a slideshow of all of the photographs taken during the project to congratulate everyone for all their work.

 Final group photo

Three ideas were identifed at the last workshop, so we used this workshop to plan how to take these ideas and make them a reality. This was our programme for the day and we decided our goals would be:

• Working groups provide progress reports on improvement ideas
• Action planning for testing of improvement ideas
• How to measure impact of improvements
• Agree homework and next steps

Connecting up: how well do we know each other?

We had been working hard to come up with new icebreakers, or ways for the group members to re-connect that are fun, and we wanted to try different approaches. We asked people to take some time to write down three ‘strange’ or unusual things about themselves – two of which were to be true and one false. Those with dementia in the group were helped by their carer or link worker.

We then asked people to work in pairs – to share their three ‘facts’ with each other and guess which one was false. After two or three rotations of this we asked volunteers to share with the whole group.  Again, people were asked to guess what was false (with those in the group who already knew, sworn to keep quiet).

This worked amazingly well and was great fun.  It revealed even more hidden talents and assets. We had sporting champions who had played at international level and represented their country, people who had flown planes or recorded with famous musicians, or climbed an impressive number of Munros.  It was inspiring.

Progress reports from the working groups

The three working groups were asked to take turns reporting back. Although each group had a nominated lead and co-ordinator, we wanted it to feel like a team effort

We asked them to:

• Describe progress on making their idea real
• Say what had helped or hindered progress
• Use the bigger group – ask them to provide questions/a response – and see if there’s anything they can do to help

We then asked each group to summarise what they had done and what they thought their next steps would be.

Group members feedback on progress

Group 1

Idea: Run a new local dementia café fortnightly

The group met at Jean and Jane’s house to discuss (and agree) actions around:

• Where to host the café? (Could be COPE. They can host for free and provide free tea and coffee)
• setting dates
• Invites and flyers
• Whether to offer/find community transport- to be be discussed at the first café meeting with people and thought about in connection with risks/liability
• Organising a raffle for the café (Maimie’s husband has got prizes organised and Helen will get the tickets)
• Plan to ask everyone coming for a small donation and give this back to COPE (Jean to provide tub for donations)
• Plan to take a short video on phone of first cafe (Jean)

What helped/hindered progress?

• Everyone offered to help
• People were able to do different things eg spreading the word, designing posters etc.
• COPE provided a fantastic venue and resource– they were helpful and welcoming. Other options were expensive or didn’t get back to them. COPE also had a range of classes that could be tapped into such as the music and movement class that immediately followed the café’s time slot
• What about risk? The group thought about those who couldn’t  get there independently, they discussed the need for a disclaimer to say it’s ‘your responsibility’ to get there and back.
• Some people were on holiday for the first meeting – everyone else was urged to attend and bring others who are interested using their contacts/networks (whether someone with dementia, a carer or professional from the group).
• If the group grows, a bigger venue may be required– perhaps next door to maintain links with COPE? The initial meeting room could  hold 20-30 people.
• Longer-term funding may be needed? Money for dementia friendly communities and/or Carers’ Partnership suggested – although significant monies from the latter are already earmarked and going to Alzheimer Scotland for dementia cafés –  with various restrictions imposed, namely that Alzheimer Scotland need to staff them.  Small local community grants of a few £100s were also mentioned.

Ambitions:

If the group could produce a reliable model, they hoped to be able to extend cafés to other areas like Maryhill and Ruchill and link in with other cafés eg NHS dementia café in Possil.

Offers of help from the wider group:

Various members of the group offered to promote the new dementia café through their networks.

Group 2

Idea: A new local carers group that is confidential and not run by ‘experts’

What they did:

• The group had looked into venues and times – possibly Knightswood Community Centre (Friday @ 4.30pm) or COPE (Friday @ 10.30am) as possibilities
• They thought about capacity: ‘What if not enough people turn up?’  They decided to wait and see how the first session went
• Helen agreed to contact the Peer Support Coordinator for the Carers Group to explore small scale funding to support the associated costs (venue and refreshments etc.) This was not intended to involve her in other ways as the group wanted this to be a self-run, ‘non-expert’ group
• The Peer support coordinator could also pass on information about other carers’ groups

What helped/hindered progress?

• The group enjoyed working together
• The ‘unknowns’ – whether the venues or timings would suit people for example, whether the meetings should be weekly or fortnightly – and how many would turn up
• Health and safety – in the chosen venue tea and coffee downstairs could not be carried up stairs

Offers of help from the wider group:

• Group 1 offered to promote the new carers’ group through their dementia café
• Viv offered to provide a flyer to promote the group when future dates had been agreed

Group 3

Idea: Volunteer/Befriending scheme, or creating more dementia champions

What they did:

• The ideas had been discussed with colleagues and other contacts

What helped/hindered progress:

• feedback indicated that this idea would require a budget and paid staff to co-ordinate
• the idea was felt to be over-ambitious for this project
• developing a wider network of dementia champions would require input from more senior managers and was felt to to be beyond the scope of this group

Offers of help from the wider group:

• This group decided to support ideas 1 and 2 rather than pursue idea 3

Macmillan

A representative from Macmillan Cancer Support Service came along to talk to the group about the organisation’s work, how Macmillan engages with and supports people, and where in Glasgow this service can be accessed. This provided our group with lots of ideas about different service approaches and  methods of communication as well as insights into the kind of support these services can offer.

Learning about Macmillan

Playlist for Life

Playlist for life, where people record 12 pieces of music that are important to them, is an idea that focuses on the benefits that music can bring to people with dementia. In particular, music has been shown to bring comfort and calm,  bringing back happy memories and helping people reconnect with each other.  For our group, trying out playlist for life provided several opportunities. It was used as an ice-breaker activity in meeting four, to build relationships and help the group reconnect. It was something that could have positive impacts for group members, that they could take away and continue to enjoy. Having tried out playlist, group members would also be able to introduce the idea to to others who might benefit.

At our fourth meeting in August, we used the connecting up session to explore group members music choices for their own ‘playlist for life’. This had proved a productive and enjoyable activity. Kerry and Rikke had recorded each person’s playlist on an iPod.

We now spent some time trying out how to use the devices and group members were able to help each other.

Group members getting to grips with technology

People enjoyed being able to hear their music choices. They agreed to try using playlist over the coming weeks and feed back at the next meeting (see homework).

Action planning

Groups were asked to reflect on their progress so far and to consider how their idea would continue after the end of KiP in March 2015. This included, whether and in what the form the group would continue and how they might access financial and practical support.  Before giving the groups some time to plan their next steps, we used the improvement approaches slides to re-cap on some ideas about how the groups might move things forward. In particular, the slides reminded people of: the importance of focusing on what is achievable, rather than what is not; finding people to work with who are keen to try something new; and that tasks should be shared so that no one group member shoulders all of the responsibility.

Here are the improvement slides

Improvement approaches slides-for NW S5

Dementia friendly Glasgow

This activity helped group members to consider how their work in developing dementia cafés and carer groups  could contribute to wider efforts in Glasgow towards building a more dementia friendly community. Group member Stephen (Dementia lead) shared information about the work of the Dementia Friendly Glasgow initiative. The group discussed what a dementia friendly community might look like, Stephen described the key aspects:

• People within a community will be aware of and understand more about dementia
• People with dementia and their carers will be encouraged to seek help and support
• People with dementia will:
  • feel included in their community
  • be more independent
  • have more choice and control over their lives

Discussing dementia friendly communities

In smaller groups, we discussed the questions in the survey and how people felt about the issues raised. The group identified that shopping and transport would be easier for people with dementia if staff would take more time, they suggested a ‘slow lane’ for supermarket checkouts and bus drivers taking care not to move off before passengers are seated. The groups also identified several local organisations that were supportive and recognised that a key factor  in feeling supported was being asked what makes a difference.

The Alzheimer’s Society have produced an information pack,  DFC_Infopack,  with a diagram to explain dementia friendly communities and also to share information from a survey which asked people with dementia about aspects of their lives.

Homework and actions for the group

Homework was around taking forward improvements and trying out Playlist for Life.

Taking forward improvements

The groups agreed to meet again as working groups before the next meeting on 10 Dec 2014

These were some suggested topics for discussion:

1.     Describe what’s happened

2.     Describe result of test based on information/feedback

3.     Does the information tell us what we need to know?

4.     What helped/hindered success?

5.     What took us by surprise (if anything)

6.     Do we want to change our plan and what next? (what we do and/or our timetable?)

Playlist for Life

Group member were set this challenge, to complete before the next meeting:

Try it out and see what the music can do for you?

Think about….

• How and when have you used it?
• How has it made you feel as an individual?
• What this has meant for you as a couple/family?
• What worked best for you?
• What didn’t work for you?
• Anything else?

OR

• For practitioners – introduce the idea to someone you know with dementia and help record story/feedback or do something else to promote.

We gave each person a sheet with information about how to use Playlist for Life.

Playlist for Life-tips on how to use

More information about how to create your own playlist is available on this website:

http://www.playlistforlife.org.uk/how-to/use-the-technology/

Plan for the next meeting/ feedback and evaluation

It was agreed that the next and final meeting would be an opportunity for people to feedback on progress and continue to plan for the future. A reflective session would allow the group to discuss their experiences of being part of KiP. Most importantly everyone agreed that a celebration would be in order!

This was the workshops when the group moved from understanding, to planning what they were going to do in repsonse to the needs they had identified. This was our programme for the day and we decided our goals would be to:

• Complete community mapping (from last meeting)
• Introduce approaches to improvement
• Develop improvement ideas to trial
• Agree homework and next steps

Connecting up

For homework, people had been asked to identify 12 songs or pieces of music that were particularly meaningful to them, and say why. We shared the chosen songs  as part of our ice-breaker using spotify and Youtube. Everyone loved this! As you’d expect, it also identified diverse tastes in music.  Some people shared memories that related to the songs they had chosen.

This is an example of one of the musical templates filled in by a group member.

Recap on person-centred care and support

We felt it was important to ground people in what was understood by person-centred care and support before moving on to identify improvement ideas we wanted to trial. At the previous meeting we had devised a task where groups designed their own campaign.  We re-capped this work and re-played the videos of the groups presenting their campaign ideas. Below are the thoughts from each of the three groups, recorded on flip chart paper and a summarising their ideas.

The power of pictures

We also used images to encourage the group to think about the meaning of person-centred support. We gave people a choice of 20-30 images and asked them to choose one that ‘spoke to them’ about person-centred care and support. Most communication, as we know but can forget, is non-verbal. It includes gestures, facial expressions, eye contact, body language and touch, but it also includes pictures.

After people had chosen a picture, we asked them to share what it meant to them.

 

Revisiting community mapping

We took the group through new additions to the map that they found as part of their homework. We felt this was important and decided to take our time over any new addition to the map. We didn’t want to overload the group with too much information in one go.

Introducing approaches to improvement

This video ‘Leadership from a dancing guy‘ is thought-provoking and identifies certain lessons, including the importance of followers. Key things the video highlights are:

• A leader needs the guts to stand alone and look ridiculous
• A leader should be easy to follow
• A leader should embrace followers as equals (it’s about the movement, not you)

But leaders are also over-rated….

• It takes guts to be a first follower. It’s the first follower who transforms a ‘lone nut’ into a leader.
• A follower should be easy to follow too. They need to be public as new followers emulate the first follower, not the leader.

Soon you reach a ‘tipping point’ and have a movement as more people join in. Eventually those who haven’t joined in will be the odd ones out. Watch the film and see a movement happen!

We also guided the group through  approaches to improvement, a powerpoint presentation, with notes, that we created. This presentation has key pointers about things to consider (and things to avoid) when trying to improve something. Thanks to Jason Leitch (Clinical Director, Quality Unit at Scottish Government) as his presentation at the National Learning Event (People at the Centre of Health and Care, on 27-28 May 2014 in Glasgow) inspired much of the content of this presentation. In summary this presentation notes:

• There’s always room for improvement
• Focus on what you can do, not what you can’t
• You choose how you respond to things (take control)
• Find enthusiasts to try out new improvements on (not those who are reluctant)
• Don’t start with a large test/pilot
• Don’t try and get one person to do it all
• Measure your improvement tests to find out of its been successful – do this often and feedback your results quickly
• Strong evidence for innovation is necessary but not enough to result in its adoption – you need to win hearts and minds
• Spread the improvement- pass the baton, find followers and new leaders

 

What we wanted to pilot/trial

Next, we split the whole group into 3 small working groups to develop ideas they wanted to trial.  As usual, we wanted a good mix of professionals and non-professionals in each group. We asked each group to work through two stages.

Stage 1:

• Each working group to identify 2-3 improvement ideas
• Share with whole group – and identify any overlap
• Each working group to choose ‘ideas’ they want to work up (at this stage people could change groups if they felt they had more to offer another group – either expertise or enthusiasm)

Each group was provided with a template and notes to help them work up their ideas and get members of the group to action certain things that would help them move this on. We also provided them with a summary of things they had earlier said they wanted to achieve and ideas for improvement generated at earlier meetings, so nothing was lost.  We asked each  group to identify a scribe and reporter (to feedback) their ideas.

Ideas from stage 1

The groups considered the ideas identified in earlier meetings.  Then,  building on learning from the community mapping exercise and motivated by what people wanted to achieve, the following ideas were identifed:

• Meeting for carers alone. There is a meeting in Scotstoun and one at COPE but nothing in the evening. This should provide peer support and be confidential – without ‘expert’ leaders. It was seen as an natural outcome from this group, with others invited to join.
• More local dementia cafés.
• Rugby reminiscence/sport other than football- could be golf or boxing in club premises.
• More stimulating activities in centres eg fitness focus, leisure activities, pool table and opportunities for people to use their trade/skills.
• Want to play games and music all year. West end concert hall – what about the bandstand?
• Healthy Food Café at Annexe (Partick) but would be good to have this elsewhere too. What kind of diet is good for us? In fact, another place like the Annexe would be good.
• Nice green places with benches.
• Increase dementia volunteers/befrienders in NW Glasgow. Support for getting people out of the house so not isolated. People don’t necessarily need paid home support, but befriending. Some people don’t like attending groups. Believe they could easily fill any spots. Could model on Dementia Friends –  a network of volunteers developed in England, but extending north to Scotland through Alzheimer Scotland.
• Ask children in school to volunteer to help? Part of awareness raising around dementia. Also make sure older people get invited to school plays.
• Fire and rescue safety checks- training with fire service staff.
• More Dementia Champions, extending it from where it started in acute hospitals – for local community eg targeting pharmacies and/or targeting private sector care workers who come  into peoples’ homes). (Referred to as Dementia Ambassadors in social work).
• A searchable online database/local asset map that can be individualised to support people to do the things they want to do (lined to personal outcome planning/Talking Points). ALISS or visual Pinterest-type models suggested. Would require pooling of knowledge and commitment of all to maintain.

Each working group chose to focus on one of these ideas:

1. A dementia café to run fortnightly in a local venue
2. Volunteer/befriending scheme in NW Glasgow (failing that would consider more Dementia Champions targeting people in community and private sector care workers; or searchable online database/local asset map that can be individualised and linked to someone’s personal outcomes)
3. A new local carers group that is confidential and not run by ‘experts’ as a natural outcome from this group that can be extended to others

Stage 2:

Each group was asked to be responsible for organising a meeting between this meeting and the next in October in order to further develop their idea. We asked someone in each group to volunteer to coordinate this meeting. Thanks to Laura K, Katherine and Helen.

We offered to provide neutral meeting space if required, but no one seemed to need this. One group had already found a date and were meeting at a group member’s house.

 

Homework and actions

The homework arose from the actions identified by each group in the ‘what we want to pilot/trial’ activity.

People were also asked to support the Playlist for Life’s i-pod donation drive which aims to collect donations of iPods to be given to people who want to create a playlist. We provided a donation blurb that was free to use (or not) when telling people about this drive.

Feedback and evaluation

We got a response of 17/17 smiley faces to describe how people felt at the end of the day (with happy, unhappy and not so sure options provided).

What went well?

• ‘All geared up to change the world!’
• Proactive and enthusiastic
• Format for the day varied and interactive
• Fun- especially the music
• Desire to pick the best ideas and move on
• Having a plan/template for each idea helped us be more concrete

What didn’t go so well?

• TV hard to hear (for person-centred campaign play back)

What will you take away?

• Work to take away (actions)
• Excitement
• Good to know we will see each other before the October session

What are you learning?

• Good ideas and push to move things forward
• Tackling subjects practically
• People’s confidence building

Mapping local assets

Following on from understanding person-centred care and what that looks like in people’s lives, as well as our interpretations of dementia, we stayed in the understanding phase for this third workshop and thought about what kind of support there is for people with dementia in this local area.

This was our programme for the day and we decided our goals would be to:

• Revisit person-centred care and support
• Map our local assets and brainstorm improvement ideas we might take forward
• Agree homework and next steps

Connecting up – the power of positive thinking

As our ice-breaker for this meeting we asked people to speak in small groups about what keeps them strong, generally and at times of adversity, and we wrote this on the wall so we could share this amongst people in the group. People did this in groups of three before repeating with others.

Summary of thoughts on ‘what keeps me strong’

The group discuss what keeps them strong

 

Re-cap on person-centred care

Recognising the difficulty in defining person-centred care, we decided to share our own perspectives on what person-centred care means. As a starting point for this discussion we watched video clips showing the perspective of a GP and person who is managing their own health.

After watching these videos we felt it would be useful for the group to develop their own language in relation to this term, so people felt confident when using it. To assist people to think through their own definitions, we asked small groups to each devise a person-centred campaign. We set the task out as following:

Purpose of campaign:

To help people know what person-centred care and support means – and what they can reliably expect of/for themselves and others.

Also consider:

• What should it say?
• How should it be presented?
• How and where could it be used?

Here are the campaigns our 3 small groups came up with:

1. A mixed media campaign with celebrity endorsement, raising awareness amongst communities about how to support people with dementia.The strap line would be: ‘your life- your choice’. The message would be that services should be built around people rather than people being fitted into services.
2. Awareness raising campaign, possibly a T-shirt to share the message:  ‘Talk to the person not the carer’ or ‘See the person not the condition’. This would be a campaign to reach people on the street and would aim to get away from the idea that help always come from services, instead all members of the community can help.
3. This campaign would focus on promoting a person-centred approach for those providing services for example through  self directed support. A key message would be: ‘See me,  I’m a person not a condition’  or ‘Plan with me: respect my choices’. The campaign wold recognise that people want to be connected to their community, it would stress the importance of  plain language avoiding jargon and having information.

Videos are missing- dropbox – there are videos of this conversation and the flip chart summaries are shown in session 4. 

session 3 – capture/ person-centred campaigns-movies  x3

Last session’s homework

In the last session people chose to:

1. Visit the Stirling Dementia Centre (given previous interest expressed in this)
2. Visit local Dementia Cafes or the Whiteinch ‘Music for Minds’ singing group
3. Shadow a colleague in a different sector or organisation

The main focus of the discussion was around the visit to the Stirling Dementia Centre

Stirling Dementia Centre

We co-ordinated the visit to the Stirling Dementia Centre, and the Dementia Link workers involved in this project volunteered to drive everyone there and back.

The centre offers visitors self-guided tours using an audio handset. This is free for people with dementia, those who are retired or unwaged and £10 for others. The tape lasts 30 mins, so the tour should last no more than an hour with stops and starts. The tour highlights dementia friendly design features and there are leaflets to take away. Everyone with online access is invited to join the centre’s library, and there are various opportunities for food and refreshments.

Here are some pictures from the day

During the session we reflected on what group members had learned. We asked:

• What was new and enlightening?
• How did this differ from what they know/works best?
• What should be mainstreamed?

Notes we took in response to these questions included:

People also reported that what they valued the most about the day was social contact and having fun together!

Another group had visited a  dementia café and fed back some positive responses to the activities they experienced. They identified that more café opportunities were needed in the local area.

Playlist for Life: the power of music

Music can help us feel connected to people and places that are important to us as well as to our past selves. We know that many life events are frequently accompanied by music. Songs or a piece of music can take us back to our childhood and re-kindle memories of past experiences.  Musical memories are stored for a much longer time than other memories (Baird and Samson, 2009) and we remain receptive to music till the end (Norberg et al,1986). It’s something dementia cannot destroy and something we can harness.

Playlist for Life is a charity founded in 2013 by Sally Magnusson (broadcaster and presenter) which encourages the use of personally meaningful music on iPods for people with dementia. The range of benefits are described as:

• Music can help you recall memories – often associated with positive feelings (though of course, it can also bring tears)
• It can make you feel good and improve your mood – and can help if you’re feeling bored, annoyed, agitated or low.
• Music reminds you of all the things you’ve done over the years – giving you a stronger sense of self or identity
• By listening to music with family and friends, it can helps us feel more connected to them and can spark conversation – it can also help care workers get to know someone with dementia
• It can create a wonderful feeling of belonging – to your past and your family
• It can help you recall words- you might remember all the words to a favourite song while others slip by
• Music is also a positive and effective alternative to other drug treatments that my not be as effective as music or may have side effects.

We thought the group would enjoy sharing some of their musical memories. We wanted to link into the playlist for life campaign that is encouraging people to make their own playlist and we felt that this was an activity that all group members could take part in.  We had some discussion amongst the group about the benefits of music.  We then asked people in groups of three to share a song or piece of music that was meaningful to them. Then we asked:

• How did that make you feel?
• Anyone want to share with the whole group, a song that is meaningful to them?
• How do you think music is beneficial to people?

After this we asked for volunteers to share some examples with the larger group. This brought laughter and tears!

Mapping our community assets

Community assets can be resources, places, activities, businesses or services (as identified by people who use the assets), to help people stay strong and well. We set out to map the assets we had locally. This was an opportunity for the group to discuss what were important resources for them and where there were gaps in local provision. We wanted this to help the group in developing their ideas for improvements.

We broke into two groups and asked each of them to use a traffic light system, writing down ‘assets’ and plotting these on the map:

• Green post-its for those assets they really liked
• Yellow post-its for those assets they liked, but where they could see room for improvement (noting what these improvements might be)
• Red post-its for the gaps – the ‘missing’ assets they wished were there

After that we brought the two groups back together and looked at similarities and differences.

Mapping assets

As a group we also explored how and when we and others could use this information – exploring issues of access; mediation; maintaining up-to-date information and responsibility for doing this. We looked at ALISS as one way of doing this. ALISS (A Local Information System for Scotland) is an online map of health and wellbeing resources.  It’s searchable by key word, location or within a certain mile radius. Anyone can add to it, describing resources in the words that they choose.

Homework

Homework arose from the activities we worked through at the meeting. For example, we asked everyone to complete a template asking for information about 12 songs or pieces of music that are meaningful to them. We plan to use this to create a playlist for each person. This would give the group the opportunity to try using playlist which might have benefits for individuals and also be a resource they could share with others.

We asked people to note any assets we had missed on our map so we could add them at the next meeting. We also asked if anyone in the group wanted  to take the map to other groups to help make sure we hadn’t missed anything. Group members agreed to take it to their local swimming club, the Annexe (a great community resource for health and wellbeing), the North West Dementia Carers Forum and the Glenkirk Mental Health Resource Centre.

Feedback and evaluation

General feedback: All smiley faces (from a choice of smiley, unhappy and not sure) as a general gut reaction to the day.

What went well?

• Everyone seemed to like the community mapping exercise – practical.
• Liked the task around creating a campaign for person-centred care and support. Helped to be able to do this for themselves and great that there were lots of different ideas.
• Everyone working well as a group.

What could have been better?

• Room temperature (too hot).
• Too much salt and chips over lunch.
• Request (from Phil) for Kerry and Rikke’s reflections on the project (as well as everyone elses’)

What will you take away from the day?

• Group working well together; people have bonded.

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:

1. Being in a social world – we are social beings
2. Being in relation – we exist in relationships with other people
3. Being in place – people have a context through which their personhood is articulated
4. 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:

1. 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)
2. We want access to more information and research about dementia so we know what to expect (visit to Stirling Dementia Centre suggested) (14 votes)
3. 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)
4. We want people with experience of dementia providing training (10 votes)
5. 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:

1. Visit to Stirling Dementia Centre
2. Go to a local Dementia Café or local singing group –dates and details provided and name of someone to welcome them on arrival
3. Identify a half-day professional-professional shadowing opportunity to ‘stand in someone else’s’ shoes’ (with IRISS happy to help broker this).
4. 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.

Group members getting to know each other using reflective ‘mirrors’

For an overview of the approach we took in this project check out the Approach applied in KiP page. This explains that the process we were working through was to learn, plan and do together.

This was the first meeting where the whole group got together. It was an opportunity to learn about each other and share our understanding of dementia. You can view our programme, and our goals for the day were to:

• Connect up and build relationships
• Share expectations about what we want to achieve
• Agree how we want to work together
• Agree homework and next steps

Connecting up

We wanted people who didn’t know each other to start to connect about things we normally discuss with our friends. Normally,  these conversations take time to emerge. We wanted to ‘speed up the process’ a little.  Inspired by life history work, and conscious that past memories can be brighter for people living with dementia we asked people to talk about: where they were born, their favourite things, a song, actor or the teacher they liked best at school, as well as happy experiences such as their favourite holiday.

To support this conversation we created large handheld ‘mirrors’ with space to insert A4 sheets of paper so people could write down other people’s answers. This visual ‘reflection’ can help people learn about each other and see who they are. Having a biography of important information about someone’s life can be important as their memory fails. Making it possible for others to develop individual relationships with them and provide personalised care. For more information on this kind of approach the Alzheimer Society has put together a ‘Remembering together’ leaflet.

Working together agreement

We also asked the group to create a working together agreement and gave them a suggested version to help start this activity. This is the Working Together Agreement they produced and we typed up afterwards so we could use it at each meeting.

Communication

To support group members to communicate effectively during and between meetings,  we drew out of the working together agreement that people would like others to:

• Speak up
• Avoid making the room too noisy
• Mix the small groups up more
• Feel free to ask if you don’t understand what is being spoken about
  

We also watched a film about communication, and proposed a ‘parking lot’ for words the group considered might get in the way of effective communication.

‘parking lot’ for jargon

In addition, we agreed that red cards were to be held in the air if a group member wanted to stop the conversation. This approach was popular as people saw it as analogous to the red cards used at football matches. Having said this, after the first meeting, no one felt the need to use them! I’d like to think this was a reflection of the fact that the group felt free enough to speak their mind.

Red card

Introducing co-production

The group identified ‘co-production’ as jargon, however this is a term that would be heard a lot in this project and therefore we felt that it would be useful for the group to explore what co-production means. To introduce the concept of co-production we watched the video the parable of blobs and squares. The group thought the film was interesting but that people spoke too quickly. There was also a debate about why the squares were bigger than the blobs if the theme was equal partnership? An alternative film  is Co-production by SPICE.

https://www.youtube.com/watch?v=egav5xjb-lg

After watching the video we engaged in small group discussions about what we do in our everyday lives that is co-produced and what we thought the benefits of co-production could be.  People suggested that co-production is ‘about a skills-mix and bringing people together to get a result- getting the washing done, fed etc’  and that ‘we do it [work this way] every day’. People also asked why the term ‘co-production’ was used when everyday language, such as ‘working together’ could be used.

Exploring person-centred care and support

We asked all group members (professionals and those with lived experience), to consider what person-centred care meant to them. This involved reflecting on: their experiences of accessing and/or providing good person-centred care; what could have been better; and what help or support mattered most to them. We asked individuals to write their answer on a card and place the card in an envelope. The envelopes were then passed around the group and when the music we played, stopped, answers were read aloud and discussed.

Here are some examples of answers on the cards:

What’s been good person-centred care?

• support from a physiotherapist who took time to consider me as a whole person when developing a treatment plan
• help from the team at the Glenkirk centre
• community nurse providing helpful information
• receiving support from health services, that make you feel cared for

Practitioners added:

• listening to family and patient’s wishes and preferences
• getting closer to what an individual needs and wants rather than fitting people into services

What could have been better?

• GP initial dismissal and repeat appointments
• poor communication/conflicting advice
• support inflexible with lack of choice

What help or support mattered the most to you?

• being listened to
• people are friendly and  introduce themselves
• family and friends
• feeling in control
• sharing with others who have similar experiences

Identifying opportunities for improving person-centred care

After this we worked in three small groups and gave each group a persona of a person who has dementia. We asked each group to map key points in their persona’s journey to illustrate positive and negative experiences before, during and after receiving a diagnosis of dementia.  We then used these stories to reflect on each persona’s experience and discuss how it could have been improved.

‘Carol’s experience’

‘Gordon’s experience’

‘Beryl’s experience’

We were mindful that most of the group were meeting for the first time and therefore exercises were devised so that group members didn’t need to bring in their personal experiences, unless they wanted to. In discussions, group members were able to explore the persona’s situation and when people felt comfortable they could include their own experiences where relevant.

Fears, worries and uncertainty were frequently mentioned particularly in the ‘before’ and ‘during’ diagnosis phases. Feeling alone and finding it difficult to tell family and friends about the diagnosis were also mentioned as was inconsistency in support from professionals. The discussions suggested that consistent support from professionals as well as reliable social support from friends and family were potential areas for improvement.

Future meetings: getting the group to help set the agenda

Inspired by one of the IRISS D cards we asked the group to help set the future agenda. We adapted the letting go of control card and asked people in small groups to think about:

• What else do we need to know/learn about to bring back to the group?
• Who can help us? (from within the group and what other expertise do we need to bring in?)
• What do we need to do between now and the next session to make some/all of this happen?

Feedback included:

What do we need to know? – how to access information, what is it we want to change? what local services support the community? how to link with carers’ groups?

Who can help us? – we can help ourselves, local politicians or councillors, Stirling dementia centre, dementia cafés, health and social care managers

What do we need to do?- arrange visit to dementia centre, arrange to visit local dementia café, conversations with colleagues to share ideas

Here’s how we shared feedback from this discussion

Homework

As this was the first meeting of the group, we decided to set the homework. A good place to start we felt, was asking group members to begin with themselves. We asked them to keep a journal/diary of personal reflections on i) what person-centred care means to me in my life (or care and support that is centred around me) and ii) what person-centred care and support should look like.  These reflections would then be shared with the group at the next session.

Evaluation and feedback

We went for an ‘evaluation-lite’ approach, asking small groups to reflect on the following and then feed back.

What’s your ‘gut reaction’ to the day – with smiley, not so sure and unhappy faces provided for them to choose from. We got a smiley face from everyone except one ‘not so sure’ response.

Positive responses from the group

We also asked three questions and asked for people’s thoughts:

What went well?

• Small group work
• Films
• Different formats

What could have been better?

• Better lunch – including more vegetarian.
• More breaks
• Points were also made at different points in the day about noise levels and it was suggested that we mix groups up in a more organised rather than self-selecting way.

What will you take away from today?

• Good atmosphere
• Everyone has taken part
• Good group