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It’s all about the research!

The penultimate Meeting Centre webinar took place on 28th October with a focus on research and data collection, and it captured a range of different perspectives. Following a welcome by Interim Director Dr Shirley Evans who has been heavily involved in Meeting Centres for the past eight years, the first presenter was Jen Bray, Research Assistant at the Association for Dementia Studies (ADS), who provided an overview of research around Meeting Centres. She began by looking at the first research project back in 2014 which build on original work from the Netherlands and brought Meeting Centres to the UK. The research identified multiple benefits to both people with dementia (members) and their families (carers), and provided the evidence that Meeting Centres aren’t just a nice idea but do actually make a difference.

Image showing a slide which has a summary of the key findings from the previous Meeting Centre work

Jen continued by looking at subsequent research projects helping to promote the spread of Meeting Centres and embed them in their communities, as well as those where Meeting Centres may not be the main focus but involved as a place to host or deliver various interventions. For example, in the Leominster Meeting Centre Heritage project the research was not about Meeting Centres, but was about local artists coming in and working with Meeting Centre members on individual projects. Looking ahead, Meeting Centres are also being included in future research bids, some of which are currently being developed and others are ones we’re waiting to hear back about. Jen recognised that it’s important to be aware not to overload Meeting Centres by being involved in too much research, but at the same time balance that risk against the benefits of research. Some projects can provide additional funding for Meeting Centres, and also provide exciting opportunities for members and carers to try new activities and have different experiences.

Image of a slide showing a variety of past and present research projects involving Meeting Centres, plus a bit to say that Meeting Centres have a role in future funding bids

A key factor of research is getting the data to provide supporting evidence, but it isn’t always easy for Meeting Centres. It’s impractical for ADS to do the data collection by visiting each Meeting Centre across the UK, especially as the number of Meeting Centres is increasing, so it falls to the Meeting Centres themselves to collect data. To help Meeting Centres we have developed a toolkit of data collection forms and information, including a wider suite of forms to support Meeting Centres if they haven’t got anything else in place, such as a ‘Getting to know you’ style form for members and carers. Jen also delivers online sessions to talk through the data collection forms and process and the team are always available to help with any queries. It was important to note that when ADS was deciding what data we recommend Meeting Centres collect, it was based on what has previously been asked for in funding bids as it needs to be useful for Meeting Centres as well as providing research evidence.

In terms of the data collection, Jen talked briefly about the five main areas, which cover basic attendance and demographic data about new and leaving members and carers, the impact of Meeting Centres on people’s wellbeing, what people like about Meeting Centres and where there may be room for improvement, case studies to provide a human angle as supporting evidence for funding bids, and important contextual information to see how Meeting Centres relate to their local community.

Image of a slide showing the five main areas of data collection

Jen concluded her part by looking at how data collection helps Meeting Centres. By acting as a central hub for all of the data, ADS is able to provide summary reports back to Meeting Centres to feed into their funding bids. This can be about an individual Meeting Centre, or giving the wider UK picture, so the data benefits a whole host of current and future Meeting Centres. It also helps more broadly by feeding into other projects, which neatly tied in with the next part of the webinar which was led by Dr Ruby Swift.

Ruby is working on a particular Work Package within the ‘Get Real with Meeting Centres’ project, which has a focus on seeing who is and isn’t been reached by Meeting Centres, and the potential barriers preventing people from attending a Meeting Centre. This part of the work draws on the attendance and demographic data captured by Meeting Centres, with a focus on those in Herefordshire and Worcestershire, and compares it with government, Local Authority and NHS data. In addition, Ruby talked about the interviews and focus groups she’s been conducting with people with dementia and family carers who don’t attend Meeting Centres, Meeting Centre staff, and health and social care professionals to capture a range of perspectives.

Image of a slide showing the research questions for the Get Real project and the Work Package Ruby is working on

Ruby is still in the process of analysing all the information but shared some emerging findings based on the available data, recognising that some records are incomplete and different Meeting Centres have been operating for different periods. The findings are shown on the slide below.

Image showing a slide of the initial findings from Ruby's work, such as 76% of members were aged 75+ at the time of joining a Meeting Centre

In terms of next steps for the work Ruby is doing, she’s going to be producing a report on the demographic data, including a map to show where people who attend Meeting Centres live. She will also be analysing the interview and focus group transcripts to explore the themes and findings around potential barriers to attendance in order to develop a set of recommendations.

Following on from Ruby was Sally Dance from the Evesham and District Meeting Centre, who talked us through the data collection activities they do and some of the challenges and benefits they’ve encountered. At the Meeting Centre the team completes daily forms to capture member and carer attendance, and these feed into a monthly summary which is fed back to ADS. They also used forms from the wider toolkit to get to know members and carers when they first join the Meeting Centre. The team has put in their own GDPR (General Data Protection Regulation) processes with a privacy notice to cover any information that they record about individuals.

Once members and carers have settled in at the Meeting Centre the evaluation forms are completed (with people who want to get involved as they are voluntary), and these are repeated every six months. These repeated forms are combined with the satisfaction forms to find out what people do and don’t like about the Meeting Centre. Sally felt that the forms are valuable as they help staff to know what is going on and see changes over time.

However, they have experienced a few challenges around data collection, with time being the main issue. At Evesham they have quite a big team, but Sally could see that in smaller teams with fewer staff and volunteers it would be difficult to collect data. Sally also recognised the importance of getting to know the members and carers as this makes it easier to know whether it is appropriate for some individuals to get involved. For example, if it would cause stress or distress for people, if carers live a long way away, or if personal situations would make it too much of a challenge. It was also useful for Sally to acknowledge that answering the data collection questions can sometimes be emotional for people as they may make them reflect on their situation and what is going on.

Despite these challenges, Sally also recognised that there were also lots of benefits of being involved in data collection. For example, people can enjoy spending time with staff one-to-one and having the opportunity to talk about how they feel and what they enjoy. It can help to provide reassurance, build confidence, and give people a sense of worth as their voices are being heard and valued. The data collection toolkit also helps staff to assess a person’s journey and see changes over time. In addition, data collection activities can help staff to pick up on and explore potential issues, and maybe even offer a route in to addressing them by providing the space and opportunity for members and carers to open up and talk about any concerns.

Overall, Sally found that data collection was valuable as it helps to shape Meeting Centres now and in the future, but appreciated that it does need some thought put into it rather than just charging in.

Graham Galloway from Kirrie Connections Meeting Centre was the final presenter and began by echoing the points Sally had raised. The main data collection contact at Kirrie Connections is Jacqui Dillon whose previous background and skill set was very useful in terms of helping the Meeting Centre get to grips with their data collection activities. They use the same toolkit as the Evesham Meeting Centre, and have also put in place a data sharing agreement and process to support work they do with other organisations and referrers. The Meeting Centre has recently implemented CharityLog, which is a database to support them with capturing and recording their data. It has streamlined their data collection and reporting, and also helps to flag up when repeated forms are due to be completed.

Graham said that the data and research evidence has been helpful when getting buy-in from funders and the Scottish Government, especially as statutory funders tend to be focused on quantitative information. He had recently asked Jen at ADS for a report to cover specific information in a particular format as requested by a funder, and shared some of the report during the webinar. As well as being important for funders, this has been very useful for the Meeting Centre as it has helped to flag up potential issues that they may wish to investigate. For example, why some members may feel less engaged in being asked what they would like to do.

One interesting point raised by Graham was around difficulties in getting baseline data collected, as although staff have to judge when it is appropriate for individuals and don’t want to bombard them with paperwork, they also don’t want to leave it too late as they can see an immediate difference in some people when they walk through the Meeting Centre door on the first day.

Thanks to everyone who presented and shared their thoughts. If you would like to find out more about the Meeting Centre data collection you can have a look at the relevant page on the Meeting Centre blog site. A recording of the webinar is also available if you missed it or want to watch it again – link to recording.

The final webinar in the Meeting Centre series will take place on 25th November, 12pm, and is called ‘Standing on the shoulders of giants’ where it will be looking at where we’ve come from, what’s been achieved so far and what’s next. Please see the website for more details.

Alzheimer Europe Conference

In mid-October 2022 Alzheimer Europe, an umbrella organisation of 41 national Alzheimer’s associations from 37 European countries, held their annual conference, for the first time in two years. The conference, which took place in Bucharest, Romania for the second time, was in person and on-line and brought together people, professionals, and institutions (government and non-government alike) around a shared mission to “change perceptions, policy, and practice in order to improve the lives of people affected by dementia”.

Association for Dementia Studies duo Dr Shirley Evans and PhD student Nathan Stephens attended, as well as having the opportunity to present their work at the conference. In this week’s blog they provide a whistle-stop summary of their key highlights and reflections of what was a packed programme.

INTERDEM

Before the conference ‘officially’ began INTERDEM, the international network of researchers and practitioners to promote research and spreading of psycho-social interventions in dementia, held their annual meeting.

A series of short presentations from INTERDEM members highlighted the breadth of work facilitated through the network that is promoting high-quality dementia care through international collaboration. Be sure to check out their web page for past and present projects and publications.

Calls went out for delegates to support numerous existing taskforces, including assistive technology, social health, methodology, primary prevention, and new ones like inequalities and workforce. There was real sense that the INTERDEM meeting offers a space in which the seeds of social change can be sewn, and as one member warned “you may return from the meet with more work than when you left”. 

The work of INTERDEM members was presented in break-out rooms, including by Nathan and Shirley who presented separately (and in different rooms) on their work with Meeting Centres.

Nathan shared some early findings of his PhD research around the costs and benefits of scaling up community-based interventions for people affected by dementia. If you would like to know more check out one of our earlier blogs, but in summary Nathan highlighted the many individual and societal benefits of implementing community support at scale in a more systematic way, and also areas that could be improved to create more value.

Shirley presented on the essential features of Meeting Centres – development of the UK criteria for community support for people affected by dementia. Shirley spoke about how the essential features were examined within a concept analysis framework, which combines both static and evolutionary methods, enabling multiple stakeholder groups to be included in the process in an iterative manner.

Eleven essential features were developed, providing a conceptual model of the UK Meeting Centres. The underpinning rationale is sufficiently flexible to enable community-based development, while at the same time providing a robust platform upon which to build the evidence base. Shirley acknowledged Professor Rose-Marie Droes for initiating Meeting Centres and also Professor Dawn Brooker for leading the Association for Dementia Studies and the initial implementation of Meeting Centres in the UK.

Shirley also presented alongside Graham Galloway from Kirrie Connections Meeting Centre and Ron Coleman from Deepness Radio on national and regional approaches to implementation and development of Meeting Centres in the UK. Significant national and regional developments have taken place over the last three years including in Worcestershire, England led by the Association for Dementia Studies, in Scotland led by Kirrie Connections and in Powys, Wales led by Dementia Matters in Powys. This has been driven by different policy decisions and funding opportunities across the three nations. In addition, the involvement of people affected by dementia is of paramount importance. As Ron explained, in Scotland this is being driven forward with a strategy board made up of a third people living with dementia, a third family carers and a third other interested parties.

Image showing the presenters sat at a table with slides projected onto a screen behind htem
Ron, Shirley and Graham with other presenters
Photo showing the conference attendees stood on a sweeping white staircase

Alzheimer Europe

No conference is complete without a punchy theme, and this year it was ‘building bridges’, coined in light of the global challenges presented by the COVID-19 pandemic and wider geo-political issues such as the war in Ukraine, a neighbour of Romania. Many, many, and many more bridge-based analogies and puns were made during the three days, however one which received a hearty applause (for all the wrong reasons) was Jan Steyaert’s ‘truss bridge’ reference to the, then, UK PM Liz Truss. Suggesting there was still some structural work to be done on the design of the truss bridge, and lo and behold, they were right.

Image showing drawings of different styles of bridge, including a truss bridge

Away from witty analogies of bridges, dementia, and UK politics, there were some hugely insightful and serious sessions. We’ve picked out just two, however recordings of all the sessions can be accessed via the Alzheimer Europe website. 

Applying an intersectionality lens in dementia care research

Chaired by Martina Roes, the session presented results from a number of research projects that use intersectionality to understand more about racial discrimination of Turkish caregivers and the communication needs of migrant carers, for example. Intersectionality has been defined as “a concept that seeks to explore how social locations and identities converge to create conditions of inequality and privilege that intersect to result in more or less social capital and privilege” (Roes et al., 2022). Support and use of the intersectionality lens has burgeoned in recent times as inequalities and the diversity of populations has increased.

The session concluded with an honest account of the challenges of applying intersectionality in the context of dementia by Saloua Berdai Chaouni. They suggested that by appreciating, holistically, the social categories and power structures that shape people’s lived experience and research, intersectionality can be used as a framework to capture the complexity of the dementia care relationship and go beyond culturally sensitive to reduce inequalities.

Building bridges, our voices, our lives

The Alzheimer Europe working group of people with dementia hosted a session in which the chair and all speakers were, rightly, people living with dementia. Perhaps unsurprising, this was hugely popular and attendance was well above maximum capacity. Chair Chris Roberts (UK) introduced speakers who, one by one, gave extremely moving, charismatic, and motivational accounts of their lived experience.

Angela Pototschnigg (Austria) and Kevin Quaid (Ireland) spoke about both public- and self-stigma, and the need to do more to improve awareness among the public and professionals and remove the taboo of dementia in our communities and social networks.

Under the Equalities Act receiving a diagnosis of dementia doesn’t mean you have to leave your job, yet many people are asked to leave their workplace following a diagnosis. Eral Jonsdottir (Iceland) shared their experience of this complex phenomenon and the importance of work to foster a sense of citizenship, purpose, and normality, not just in people living with dementia, but people full stop.

Other speakers included Nigel Hullah (UK) who highlighted the worth of co-production to improve our services and understanding how we should develop new ones. Co-production explains a working structure and process whereby people with lived experience work alongside researchers and practitioners.

Chris ended by introducing two new members of the working group, and in four simple words, “don’t they look normal”, emphasised the underpinning narrative of the session: life shouldn’t, and doesn’t, end when you receive a diagnosis of dementia.

References

Roes, M., Laporte Uribe, F., Peters-Nehrenheim, V. et al. Intersectionality and its relevance for research in dementia care of people with a migration background. Z Gerontol Geriat 55, 287–291 (2022). https://doi.org/10.1007/s00391-022-02058-y

Thanks to Nathan and Shirley for giving us an insight into the conference.

New Meeting Centre training coming up

Over the past few years we’ve been delivering training to help staff and volunteers who are looking to set up a new Meeting Centre, with the training being online since the start of the pandemic. Our latest course is about to start in a couple of weeks, but we’re pleased to say that we can now offer three further courses next year.

On each course you’ll learn about Meeting Centres, find out more about the ‘Adjusting to Change’ model which is the underpinning ethos behind Meeting Centres, learn about psycho-social support and physical activity, and how to support family members and friends. The courses combine video clips, activities, discussion boards, live sessions, reading and useful resources, most of which can be done at a time to suit you.

You won’t be able to book onto the courses just yet, but we thought we’d let you know the dates so you can get them in your diary if you’re interested or just starting to think about Meeting Centres.

Cohort 1 – April

  • Week 1 03/04/23
  • Week 2 10/04/23
  • Week 3 17/04/23
  • Week 4 24/04/23
  • Week 5 01/05/23

Live sessions will take place on Thursdays 1-2pm. There will also be two follow-up supervision sessions on 06/07/23 and 05/10/23

Cohort 2 – July

  • Week 1 03/07/23
  • Week 2 10/07/23
  • Week 3 17/07/23
  • Week 4 24/07/23
  • Week 5 31/07/23

Live sessions will take place on Wednesdays 10-11am. There will also be two follow-up supervision sessions on 04/10/23 and 10/01/24

Cohort 3 – October/November

  • Week 1 30/10/23
  • Week 2 06/11/23
  • Week 3 13/11/23
  • Week 4 20/11/23
  • Week 5 27/11/23

***please note the following has been updated***

Live sessions will take place on Tuesdays 10-11am (except for Week 2 when it will be on the Monday). There will also be two follow-up supervision sessions in January and June 2024.

We’ll promote each course closer to the start dates and update our website in due course, so keep an eye out for further communication next year.

What’s going on with Get Real?

On a chilly and slightly damp autumn day, with the summer break well and truly over, Research Associate Thomas Morton restarted the Meeting Centre webinar series with an update from the ‘Get Real with Meeting Centres’ project. The project began in January 2021 and is looking at factors affecting the sustainability of Meeting Centres for people affected by dementia in rural areas to see what lessons can be learnt to help emerging Meeting Centres.

The project involves a team from within the Association for Dementia Studies, as well as a number of collaborators from different organisations.

Image showing two slides from the presentation. These have photos of the ADS team and a screenshot from an online meeting of the Collaborator group

Get Real is using a realist evaluation approach, aiming to uncover ‘what causes what?’ with a focus on keeping Meeting Centres going. Essentially, we’re looking to end up with statements that say ‘if this is the case or you do this, people are likely to respond in this way and you get this outcome’.

The project is organised into five work packages with each WP looking at a particular aspect, with the overall work centring around three case studies:

So, what have we done so far and what have we got left to do?

Work Package 1 – Public/stakeholder involvement

Within this work package we have had a range of input to help us plan the project, check we’re asking the right questions, and develop our data collection materials. You can find out about one of our consultation activities in a previous Get Real blog.

Work Package 2 – Meeting Centre site case study data gathering

Interviews and group discussions have been carried out at each Meeting Centre case study site, capturing the views of members, family carers, staff, volunteers, trustees and external collaborators. We now want to revisit and interview a lead/manager at each Meeting Centre to explore the legacy of Covid. What has changed at the Meeting Centre as a result of Covid? Has it had a long-term impact or have things returned to ‘normal’?

Work Package 3 – Discrete Choice Experiment questionnaire

The focus of this work package has been a survey for family carers to find out what they, and the person they support, value most about Meeting Centres. We’re also carrying out focus groups with Meeting Centre members to explore some of the same questions in a more accessible format, to help triangulate our findings.

If you are a family carer or friend with experience of Meeting Centres, there’s still time (but not much!) to do the survey, just use this link. The survey will be closing mid-October, so this is your last chance to get involved.

Work Package 5 – Who is not being reached?

(We know, it’s in the wrong order, but go with it!) This work package was an additional piece of work that came about after the original Get Real project was funded and underway. It focuses on using demographic data from Herefordshire and Worcestershire to compare information about Meeting Centre members and carers to Government, Local Authority and NHS data to see who doesn’t attend Meeting Centres. Interviews with staff, health and social care professionals, people living with dementia, and family carers have also been conducted to find out and explore some of the reasons why people don’t attend Meeting Centres. Is it because they don’t know about them? Maybe they don’t understand what they are and think they’re not appropriate, or maybe they can’t attend as they don’t have transport. That’s what this work package is trying to find out.

A report is being finalised to show where people attending Meeting Centres in Herefordshire and Worcestershire are living, and the interviews are being analysed to feed into work package 4 (see, that’s why we told you about this bit first!).

Work Package 4 – Developing theory and materials

As part of this work package we’re going through all of the transcripts from the interviews and focus groups from each Meeting Centre to identify the common themes and where there are differences. Ok, so it’s a bit more complicated and involved than that (see the image below and a previous blog to get a feel for what’s going on), but that’s essentially the goal. Once we’ve done this for all of the Meeting Centres we’ll need to draw out ‘what causes what with regards to helping or hindering sustainability?’ This can then be combined with information from work packages 3 and 5 to enable us to develop some overall recommendations.

Slide showing example diagrams and the key systems: membership, finance, internal relationships and external relationships

What have we found so far?

While we’re still in analysis phase of the project, some themes that have been identified so far include:

  • A competitive short-term ‘bid and tender’ system of funding doesn’t support stability and sustainability – it means the venue, staff, and the resources they need to do their job are perpetually under threat and may need to keep changing to adapt; and if people have to keep putting time and effort into finding funding, they can’t focus fully on actually running the Meeting Centre
  • Skilled and knowledgeable staff with time and resources available are key to leading a Meeting Centre – it’s too much to ask volunteers to run a Meeting Centre by themselves
  • Trustees with diverse skills, experience and contacts are important for longevity – they can provide key information and connections to help the Meeting Centre address issues that it may encounter
  • The most important thing for members is the people – what counts is the friendship, social interaction, and a welcoming place to go
  • A fixed venue helps embed a Meeting Centre in the community and opens up multiple other opportunities – it can be challenging if you have to pack up and vacate a venue after each session, or if there is no physical focus for the Meeting Centre outside of opening hours

The following image shows some of the initial findings relating to organisational structures and pathways, such as knowing where a Meeting Centre fits within the local dementia care pathway and how organisations do, or don’t, refer into them.

Image showing some of the themes around organisational structures and pathways

One theme that has emerged quite strongly is ‘mission drift’. This is where Meeting Centres have a clear focus for what they should be doing but, for various reasons, other factors can influence what is actually being delivered. For example, if there is no support available in an area for people in the later stages of dementia, although the Meeting Centre is not appropriate for them it can be difficult to turn people away or tell them they can no longer attend. This can change what the Meeting Centre provides as it tries to cater for everyone, which in turn could discourage people who are in the earlier stages/newly diagnosed if they see what the Meeting Centre is doing and feel it’s not for them, when actually they are the target group.

Image showing more information about the theme of mission drift

Following the presentation from Thomas, there was time for some discussions:

  • There was an interest in the male/female dynamic in Meeting Centres, and groups more generally. It is being noticed that women tend to recognise the importance of engaging with social groups and activities more than men do, so even though membership may be fairly balanced, it is likely to be wives and daughters who are encouraging people to go to Meeting Centres. Kirrie Connections Meeting Centre confirmed that they have seen this, as the vast majority of their family carers are female.
  • It was wondered whether the project would be able to say what the priorities should be for Meeting Centres, for example what aspects may be more or less important than others? Thomas responded that it is more about identifying some of pitfalls to look out for, or things to be aware of, which can include achieving a balance between activities and socialising. Although people may be attracted by the opportunity to take part in an activity, they actually stay for the social aspect. It’s not about one or the other, but making both available. People attending Meeting Centres report feeling safe and enjoying having a chat with people as what they value first and foremost.
  • When looking at reasons for not attending, have previous experiences been considered, such as being member of other groups, or being used to attending social groups? While this has not explicitly been asked, it has come up in various interviews with people saying what they used to do and the types of groups they used to attend. There was also the recognition that it also comes down to personal preferences; if a person has never really enjoyed attending social groups before, why would they go to a group now?
  • It was suggested that it might be useful to consider talking with hospital and hospice staff about starting the conversation regarding transitions or people moving out of Meeting Centres. While there may not be anything for people to go on to, feeling confident to have difficult conversations at the right time can help to manage expectations and prepare people for the future, making it easier when the Meeting Centre is no longer appropriate for them.

Thanks to Thomas for the presentation and discussion, and thanks to those who attended. If you were unable to attend or would like to watch the webinar again, here is a link to the recording.

The next webinar takes place 12noon on Friday 28th October, when ‘It’s all about the research!’. You can find out more and get joining details from our website.

Meeting Centres in Scotland – a story in two parts

In the past week two event took place relating to Meeting Centres in Scotland, and our Research Assistant Jen Bray was able to attend both. Here’s what she did.

Part 1

On Friday 2nd September, the Dunblane Meeting Centre had an open afternoon to promote the expansion of their existing Memory Café, and their next step in becoming a full Meeting Centre. The event was primarily aimed as local health and social care professionals, organisations and individuals to promote the Meeting Centre and make people aware of what was available on their doorstep. There was a great turnout with a real mix of people, including some potential new members and carers who were able to meet the staff and volunteers, and get a feel for what a Meeting Centre is.

It was a great event with a really positive buzz, and I spent so much time talking to a variety of people that I forgot to take any photos! There was a lot of networking taking place, and plenty of cake to go round. As well as sharing my knowledge of Meeting Centres, I learnt a lot from everyone else and made some great connections. An added bonus was getting some ideas of things to do and places to explore in Edinburgh over the weekend! Thank you to the Meeting Centre staff and volunteers for making me feel so welcome, and it was lovely to meet them in person after only seeing them on Zoom sessions for the past 18 months. Well worth the trip!

Image containing four photos showing Dunblane Cathedral, Edinburgh Castle, a garden, and some flowers

Part 2

On Monday 5th September it was the Alzheimer Scotland conference and another chance to meet ‘Zoom people’ in real life. The theme for the conference was ‘Prevent. Care. Cure.’ with sessions focusing on each of these three themes throughout the day. Two symposiums with parallel sessions also took place, and during the second one I was lucky enough to present as part of a session on Meeting Centres. After providing a bit of background about Meeting Centres and the ‘Adjusting to Change’ model, I handed over to Graham Galloway from Kirrie Connections Meeting Centre who showed the impact that their Meeting Centre is having. The session was concluded by Ron Coleman and Karen Taylor from Deepness Dementia radio & media who shared their plans for Meeting Centres on the Western Isles of Scotland.

It was a great session with a lovely audience, making it a nice, gentle re-introduction to in-person conferences in quite a while. A full conference programme meant we didn’t have a huge amount of time to just chat, but I definitely came away with a lot of interesting information to get my head around.

Image showing three photos from the presentation - the opening slide, Graham presenting, and Ron and Karen doing their bit

And so my trip to Scotland has come to an end. It’s been a fab few days with lots of lovely people, and it was great to get the chance to do this.

Meeting Centre webinars – back after a summer break

Following a (far too short!) summer break in July and August, the Meeting Centre webinars will be returning in a few weeks. We’ve got three webinars left in 2022, and they are:

  • 30th September (12noon to 1pm) – We’re All in this Together! People with dementia and family carers tell us what they value about Meeting Centres and how they see them developing across the UK.
  • 28th October (12noon to 1pm) – It’s all about the Research! Hear about the different research projects and from those collecting data on a daily basis at Meeting Centres. How are we adding to the Meeting Centre evidence base?
  • 25th November (12noon to 1pm) – UK Meeting Centres: standing on the shoulders of giants. Taking a look back and looking ahead over the next three years.

You don’t need to register for any of the webinars, just use the link below to join us on the right day at 12noon. We hope to see some of you there as it’s always great to have a ‘live’ audience and get some discussion going at the end of the session. The link you’ll need to join each webinar is: https://us06web.zoom.us/j/89853674462?pwd=Wk1uWTk4SzNvNTdiNU9WVHd4WE9odz09 (Passcode: 555223) This information is also available our website.

We’ve already had five webinars in 2022, but if you missed any of them don’t worry! Have a look on our website and you’ll find links to a recording and blog for each webinar so you can catch up in your own time. You can also access previous webinars that we held in 2020 and 2021, providing a great record of how our work around Meeting Centres has evolved over time.

See you 30th September!

Meeting Centre resources

As part of our earlier research around Meeting Centres we developed a guidebook to help people understand the process for planning and opening a new Meeting Centres. We also produced a booklet describing the ‘Essential Features’ of what makes a Meeting Centre. In our current work, we have spent time reviewing and updating these resources, as well as expanding the set to include a booklet for carers and various information sheets.

What did we do?

Our existing resources were originally developed back in 2017, so we were aware that they were likely to be out of date due to progress around Meeting Centres and our work around data collection activities. As Meeting Centres are gaining real traction and spreading across the UK, we felt it was important to take the time to take stock, review and update our resources. With this in mind, we pulled together various feedback on the resources. This included comments from people who had attended our training courses, including people affected by dementia, and the practical experiences of people who have actually been setting up Meeting Centres.

Although we didn’t carry out a formal feedback gathering activity, we’ve been keeping track of suggested updates and changes for a while now, so thank you to everyone who has shared their thoughts with us. We also reviewed the language we used within the guidebook, tried to bring out the role of people affected by dementia in the planning process, and acknowledged the impact of the pandemic. The data collection forms within the guidebook were also updated to reflect those that were piloted with different Meeting Centres and are now being used widely in practice. While none of these were major changes and may not be immediately obvious, we hope that they have strengthened the guidebook and brought it up to date.

We’ve also created a new information sheet to help spread the word about Meeting Centres and help people understand why you might want to open a Meeting Centre.

The main activity was actually carried out by Together in Dementia Everyday (tide), who worked with unpaid carers from Meeting Centres across the UK to reflect on their own experiences and compile a booklet of information specifically for carers. Their aim was to focus on what they think carers need to know about Meeting Centres. It’s a great new addition to our suite of resources, bringing the views of carers to the fore.

What’s left to do?

Work is still ongoing to develop a booklet of information specifically for people with dementia who are looking to become Meeting Centre members. This work is being led by Kirrie Connections Meeting Centre, and will be written by members, for members. As with the carers’ booklet, this will be another amazing resource to enhance what’s already in place. We didn’t want to rush the development of this booklet, so will be added to our resources in due course.

We’re also going to be including a lot of information around data collection on the Meeting Centre blog site to help people understand what is involved and to support those who may be less confident with these sorts of activities.

Where can I find the resources?

To try and make the resources easily available, you can find them in two places. Firstly, they are on the ‘Useful Resources‘ page of this Meeting Centre blog site. Secondly, they are on the Association for Dementia Studies’ website.

Thank you to everyone who was involved in creating or reviewing the resources. We’re treating the resources as living documents and will continue to review them over time.

Worcestershire Meeting Centres Programme

A small but select group gathered for the latest webinar in the Meeting Centres series which focused on development and progress of the Worcestershire Meeting Centres Programme and how it relates to one of our current PhD studentships.

Following a brief introduction by Dr Shirley Evans, Dr Becky Oatley began by giving an overview of the background for the Worcestershire Meeting Centres Programme. Back in 2020, Worcestershire County Council provided £540,000 from their Business Rates for Public Health Benefit with the aim of pump priming Meeting Centres across the county with up to £60,000 of funding in total for their first three years. The programme was just at the point of inviting community organisations to apply for the first round of funding when Covid hit and delayed everything by around six months. Despite this initial setback, multiple applications were received and assessed, and there are now ten funded Meeting Centres across Worcestershire in addition to the original demonstrator site in Droitwich Spa.

Slide showing the various Meeting Centre locations on a map of Worcestershire including Kidderminster, Evesham, Malvern Link and Redditch

Using the Evesham & District Meeting Centre as an example, Becky gave a brief overview of what happens at a Meeting Centre. Essentially, the activities that take place at a Meeting Centre support people to adjust to the changes that a diagnosis of dementia brings. While this includes carers, and additional support is provided for them where needed, it is currently optional for carers to stay and join in as for some the opportunity to have a break and respite may be the most important factor at that time.

Image showing quotes from members and carers such as 'When I come to the Centre I feel like I belong. You all listen to me and we share a lot of laughter and that makes me happy' Also 'The Meeting Centre helps us to realise that we are not walking the dementia pathway alone. We enjoy the friendship we find there and the varied activities'

There have been several challenges for the Worcestershire Meeting Centres Programme, not least the impact of Covid. As well as delaying the call for funding applications, Covid has affected the diagnosis process for potential members. As Meeting Centres are aimed at people who have mild to moderate dementia, this delay means that by the time some people are diagnosed they may be at a point when Meeting Centres are no longer appropriate for them. Additionally, anxiety or a reluctance to be back out and about going to group activities may dissuade some people from attending Meeting Centres. Rising energy and cost of living have also had an impact on Meeting Centres as the energy bills for their venues and the prices of various resources used in activities have increased and need to be covered. The final challenge has been around reaching new members. Although there have been lots of different activities going on with support from ADS to explore different routes to the Meeting Centre, both directly with the public and also with potential referrers, this has still been a challenge. Many Meeting Centres have been holding open days and taster sessions to give people a chance to see what the Meeting Centre and venue is like before deciding whether to attend.

Slide showing where members come from. For example, referrals from professionals, via a Task and Finish Group, self-referrals, via open days, and after free taster days

So what next? The first Meeting Centres funded as part of the programme are just going into their second year of operation and have had their next round of funding confirmed. Part of Becky’s role is to develop a county-wide community of practice to bring the Worcestershire Meeting Centres together. It is hoped that this will provide a platform for them to share their practice and experiences, and invite other organisations to get involved to spread the word and knowledge of Meeting Centres.

For the second part of the webinar Becky handed over to PhD student Nathan Stephens, who is evaluating the social and economic value of the Worcestershire Meeting Centres Programme, and shared some of his early findings with the group.

Social Return on Investment (SROI) has previously been used by organisations such as the Life Changes Trust to evaluate the impact of Dementia Friendly Communities in Scotland. Impact is often measured in financial terms, but this is not necessarily the best way, so SROI takes a more pragmatic approach to measure and account for social value and look at what actually matters to the people involved. It accepts the complexity of interventions such as Meeting Centres and does not begin with predefined outcomes, but tries to capture the wider range of experiences and look at cause and effect. Ultimately though it is an economic measure so Nathan will end up with a monetary figure. However, it’s important not to view it as a single measure of success but to see the ‘£’ as a common unit making it possible to compare outcomes and see where most value is being created and where improvements could be made. (Please watch the recording of the webinar for a much better explanation from Nathan!)

Although there are now ten Meeting Centres funded as part of the programme, there were only five when Nathan’s PhD began. His work is focusing on three of these as a cohort for his evaluation. The first part of the work involved consulting with various stakeholders about their own experiences around Meeting Centres and what changes they have seen. This information has then been analysed and mapped to identify patterns and outcomes, as well as the activities that need to take place for those outcomes to occur.

Image showing two slides of the various stakeholders at system, organisation and individual levels, and the start of the mapping process with coloured blocks linked by arrows to show how different bits relate to each other.

So far 23 well defined outcomes have been identified across five stakeholder groups, and the next step is to evidence the outcomes to make sure that they are actually happening, and begin to associate financial costs to them to get the final SROI value.

Nathan took the group through a few of the themes that are emerging from his work so far. Firstly, building back strong, sustainable, and fair communities. Some of the points raised by Nathan around this theme to get us thinking included:

  • Was access to the funding fair? It can be easier for larger organisations to apply due to their existing infrastructures and ability to respond to the funding call at fairly short notice.
  • Is their equity of access to Meeting Centres by families? There is a need to reach different communities who would benefit from the support provided through attending and having contact with Meeting Centres, not just during the sessions but wider signposting to other services. The cost of attending may make it inaccessible to some people, especially in more deprived areas. If a Meeting Centre runs at the same time as other existing services it may be less likely that some people will attend, especially if there are transport or cost issues involved.
  • The programme has helped to develop the workforce by providing opportunities for training and improving knowledge and skills, not just for staff but also volunteers and some carers.
  • The programme has raised the profile of dementia in the county, and also highlighted the lack of post-diagnostic support available in many areas.

Secondly, there was a theme around connectivity and culture change. The programme, and Becky’s role within that, is helping to bring different organisations and services together. Having a shared purpose and common concept like Meeting Centres is key to mobilising this joint working. However, there are still challenges to overcome to ensure efficient and longer-term engagement.

The third theme discussed by Nathan was economies of scale. If an organisation runs more than one Meeting Centre they can share human, physical and technical resources across them to reduce costs, and also benefit from having centralised or shared systems and processes in place. While this can potentially be helpful in terms of sustainability, there is a concern that is may result in a standardised, simplified approach to Meeting Centres. This in turn could risk diluting the underlying Meeting Centre ethos by repeating the same model in multiple areas rather than really focusing on providing optimum support and knowing what is important for individual communities.

Nathan concluded his session by leaving us with a couple of points to think about:

  • Have we reached a tipping point now that Meeting Centres are taking of and spreading rapidly across the UK?
  • Are we at risk of the commercialisation of Meeting Centres?
Slide showing the two points to think about, with definitions of what tipping point and commercialisation mean

Discussions after the presentations indicated that everyone could see the value of the work being done by Nathan and how the principles can be applicable to Meeting Centres in other areas.

Thanks to Becky for setting the scene about the Worcestershire Meeting Centres Programme and to Nathan for getting us to think about some of the deeper aspects of Meeting Centres that maybe we don’t necessarily want to face up to but really need to as Meeting Centres take off across the UK. It will definitely be interesting to see how things develop over time.

A recording of the webinar is available here.

Our webinars will be taking a short break over the Summer, with the next one due to take place on 30th September looking at ‘We’re all in this together!’. You can find out more information and details on how to join the webinar on our website.

The Evolution of Meeting Centres in Wales

On a sunny Friday lunchtime our latest Meeting Centres webinar took place with attendees from across the UK. The session was introduced by Dr Shirley Evans, who gave a bit of background about how the Association for Dementia Studies (ADS) first began working with Dementia Matters in Powys (DMiP) in 2015 when establishing the Leominster Meeting Centre.

The webinar was presented by Deborah Harold from DMiP, who started by setting the scene about where Powys is and the largely rural nature of the county. In fact, as Deborah highlighted, Powys is the most rural and sparsely populated county in England and Wales and covers around 2000 square miles.

Back in March 2017 the first Welsh Meeting Centre opened in Brecon, having secured a small grant from the Integrated Care Fund for a pilot phase. Further funding from the National Lottery Community Fund enabled the Meeting Centre to continue, with three more Meeting Centres also being covered by the funding. Consequently, in April 2018 two new Meeting Centres opened in Ystradgynlais and Llandrindod Wells with Newtown Meeting Centre following in October 2019. The Newtown Meeting Centre is supported by Dementia Friendly Newtown, who recognised the demand and need for a Meeting Centre and approached DMiP to ask if one could be set up. They also provide financial support by covering the venue hire costs and transport costs.

DMiP slide with maps showing the spread of Meeting Centres in Powys

The four DMiP Meeting Centres became a demonstrator site as part of the UK Meeting Centre Support Programme in late 2019. As a demo site, they share their experiences and host visits to support others looking to set up their own Meeting Centres.

Then in March 2020, just as DMiP were settling in to having their four Meeting Centres up and running, Covid hit and the Meeting Centres had to close. However, they didn’t want to abandon their members and carers, especially as they didn’t know how long they would be shut for, so they provided telephone support, newsletters etc. and also launched a Virtual Meeting Centre to maintain overall Meeting Centre ethos. In the weekly Virtual Meeting Centre sessions they used themes such as nature watch or the 60’s to engage people and provide a focus. The sessions brought together members and carers from the different Meeting Centres across the county. They also ran carer sessions for local support through each Meeting Centre, one of which is ongoing. In terms of activities, a monthly ‘Knit and natter’ group was set up with resources being sent out to people. That group is still going strong and the Newtown branch is helping to raise funds for their Meeting Centre. DMiP also offered physical exercise opportunities, with one carer setting up a YouTube to share video clips of seated exercise. Online seated sessions were also provided by linking up with the dance company Impelo, who are now coming into the Meeting Centres in person to work with members and carers. DMiP set up their ‘Winter games’ where members and carers were given the opportunity to try lots of different activities at home, and share their creations with others. Those creations were also exhibited at their ‘Summer games’ when people were able to get together in person. This event followed a suggestion from a member about wanting to meet people from the other Meeting Centres that they had only previously met online. Deborah announced that DMiP have just secured funding for a similar summer games event this year with a Jubilee theme – just don’t ask about the goat! (If you’re intrigued, you’ll have to watch the recording!)

Slide showing examples of the activities from the Winter games

DMiP secured funding to reopen their Meeting Centres in October 2021, but a condition of the funding required slightly different angle so Powys Hybrid Meeting Centres were launched. These enabled people who were unable, unwilling or less comfortable to mix with others and attend a Meeting Centre in person to still participate in activities and be part of sessions from their own homes. DMiP was able to loan out equipment with built-in internet to support this, which also allowed people to connect with families and friends.

The fifth physical Meeting Centre opened in Welshpool in March 2022 after a slight delay due to the January spike in Covid cases, but is now one of the best attended Meeting Centres. Dementia Friendly Welshpool supports the Meeting Centre, having originally approached DMiP to get it set up, by covering venue costs and helping with promotional activities.

DMiP slide with maps showing the spread of Meeting Centres in Powys plus the Virtual Meeting Centres

Recent art sessions, ‘Painting With Frannie’, have been taking place at various locations including Brecon Meeting Centre, with an exhibition at the Senedd as part of Dementia Awareness Week. The sessions are run by Frances Isaacs who has Posterior Cortical Atrophy, and she got to meet many ministers through the exhibition and demonstrate the importance of the work going on. The sessions are part of a Powys-wide project with Government funding.

Image showing people taking part in the art sessions

So to summarise where DMiP has got to, there are now five Meeting Centres up and running in some of the main towns across Powys, with further support provided via the hybrid model. In addition to Deborah there are four full time members of staff who are supported by an amazing team of over 20 volunteers. DMiP is also part of the National Consortium of Meeting Centres who met for the first time recently to consider next steps once the current ADS research project funding comes to an end.

Following the presentation from Deborah there was time for some wider discussion and questions, with a brief summary provided below:

  • There are lots of smaller towns in Powys, so satellite Meeting Centres might be an option. They are likely to be difficult to fund and sustain, but it may be possible to set up memory cafes as feeders into Meeting Centres.
  • In Scotland they are looking at a satellite model and mobile Meeting Centres, so are likely to face similar issues as in Powys. Internet connection is an issue in Powys but they have found portable devices (GrandPad) that can overcome it even in remote areas, enabling people to still join in sessions virtually.
  • DMiP does not have its own buildings, and storage can be an issue. Some venues have limited storage that they can use, otherwise staff have to make sure they’ve got the right equipment and resources each day. It can be difficult in terms of logistics, but also means that groups aren’t able to put their own stamp on a space like other Meeting Centres in Leominster and Kirriemuir. However, owning a building has its own challenges such as overheads.
  • In terms of promotion and advertising, support from Dementia Friendly Communities is key. DMiP actually formed through a strong link with Dementia Friendly Brecon, who recognised the need for a countywide approach. A longer-term goal is to achieve Dementia Friendly Powys. The local activities and support from Dementia Friendly Newtown and Welshpool have helped to put the Meeting Centres on the map, with higher member numbers being seen in both areas. DMiP do a lot on social media as it’s free, but recognise it may not reach all audiences, so it’s useful to be able to tap into local groups and organisations and what they’ve got going on.
  • Liverpool is looking at setting up a mobile Meeting Centre, but even though it is a big city there are similar problems as in rural areas. It’s parochial, so people living in some areas won’t attend groups in other areas. Liverpool Meeting Centre won’t be able to have its own venue, but being in different places will make it possible for them to try out various options and locations to see what works and where it might be best to have a focus. The important thing is seeing what works for your own area and community.
  • The intergenerational work being carried out by DMiP is also important and heart-warming, helping to breakdown stigma and create connections with the next generation.
  • Meeting Centres are able to support people who are awaiting diagnosis and support them to go through the process. This can be particularly helpful when memory assessment services are experiencing long waiting lists but don’t want to leave people without support in the interim.
  • The main concern for DMiP is the continual search for funding, when the benefits of the work being done and the support provided is so vital and obvious. Meeting Centres tick a lot of boxes as a provision that could be rolled out across the country, but often struggle because many funders prefer to fund new projects rather than support existing initiatives.

It was clear from the feelings expressed by everyone in the webinar that the work being by DMiP, and by Meeting Centres more widely across the UK, is necessary and genuinely appreciated. Thanks to everyone for taking part.

A recording of this webinar can be found here.

The next webinar will take place on 24th June and is looking at the ‘Worcestershire Meeting Centre Programme’. For more details and the link to join, please visit our website.

Keep up to date with Meeting Centres on twitter @MeetingCentres

The ever-expanding Meeting Centre family

Since the start of April, we’ve been sharing daily posts on our social media channels (@DementiaStudies on Twitter, @adsuow on Facebook) to introduce everyone to the different Meeting Centres – and members of the wider Meeting Centre family – throughout the UK. When we started we weren’t quite sure how long it would take as we thought new Meeting Centres might open before we got to the end, and we were right! As a result, we’ve only just finished the daily posts!

The Meeting Centres UK logo, showing two stylised people touching hands and creating the outline of a house

We know some people don’t have access to social media, so we’ve pulled all of the information together in this blog. As each Meeting Centre is unique, it would be impossible to tell you everything about them, so we’ve stuck to some basic info and provided some links to help you find out more. Keep an eye out for one in your area.

A collage of images showing members taking part in different activities
An image of a tree made up of buttons, with words such as welcoming and inclusive around the outside. This is an example of one of the activities carried out at the Meeting Centre
  • Kirrie Connections, Kirriemuir, Scotland is open Tuesdays, Wednesdays, Thursdays and Fridays, with more information on their website www.kirrieconnections.com
A flyer for Kirrie Connections Meeting Centre. The information on the flyer can all be found on their website
The Newtown flyer, which shows information that is available on their website
  • Evesham & District Meeting Centre, Worcestershire is open Tuesdays, Wednesdays and Thursdays and the website is https://edmhss.org/
An image from Evesham's flyer, and all the information can be found on their website
The Dementia Friendly Dunblane logo with three forget me not flowers
The Brecon flyer, which shows information that is available on their website
Image of a room with tables and chairs set out
  • There are actually three venues forming the North Somerset Meeting Centre. Clevedon is open on Tuesdays, Portishead on Wednesdays and Nailsea on Thursdays. The website is www.aliveactivities.org
The North Somerset flyer, which shows information that is available on their website
The Ystradgynlais flyer, which shows information that is available on their website
The Worcester flyer, which shows information that is available on their website
The North Tyneside flyer, which shows information that is available on their website
The Malvern Link flyer, which shows information that is available on their website
The Hereford Veterans flyer, which shows information that is available on their website
The Llandrindod Wells flyer, which shows information that is available on their website
The Malvern Hills flyer, which shows information that is available on their website
A series of photos taken from their website, showing people joining in different activities such as crafts and outdoor exercise
  • Oldbury Meeting Centre, West Midlands, runs on Tuesdays. The website is https://www.agewelluk.org.uk/ There are also plans to open a second Meeting Centre in the Sandwell area.
An image of the Oldbury flyer, showing the address (Warley Baptist Church, Castle Road East, Oldbury, B68 9BJ) and opening times (Tuesday, 10.30am – 3.30pm)
Photo of an event showing people sat round tables outdoors
  • Not strictly Meeting Centres, but groups run by The Academy for Dementia Research & Education align very closely with the Meeting Centre model and are part of the wider Meeting Centres family. The group in Northampton, Northamptonshire runs on Mondays, while the group in Lutterworth, Leicestershire is Monday to Friday. The website is www.academyfordementia.org
The Academy for Dementia Research and Education logo
The Coach House where the Meeting Centre takes place
Image showing two photos taken from Prestwick social media or website, one with people attending an outdoor event and one with people sat at tables in a social club
The Forget Me Not Meeting Centre logo, which is a wreath of flowers and leaves around an ammonite
  • A new Meeting Centre will be opening in Montrose, Scotland in May for three days a week. We’re not sure of the details, but think this is the email to use if you’re interested! Meetingcentre@montrosect.org.uk
Banner saying ‘coming soon!’
The Lochside Connections logo, showing the Meeting Centre logo next to a blue shape representing the loch
Wirral flyer giving information that is available via the website
Image showing two female members of staff from the Meeting Centre
  • New funding has recently been announced to support the opening of Meeting Centres in Redditch and Bromsgrove in Worcestershire, so keep an eye out for future developments
Banner saying ‘coming soon!’
  • We’re not sure of the details or timescales at present, but it looks like there’s good progress developing a Meeting Centre in Stornoway, Scotland.
Image of the building where the Meeting Centre is likely to be held

There are also lots of areas with strong potential and interest to open a Meeting Centre, including Tenbury Wells, South Gloucestershire, North Wales, Wolverhampton, Havant, Alton, Aldershot, Liverpool, Musselburgh, Rosyth, Fife, Arbroath and Aberdeenshire. It looks like the Meeting Centres family will be expanding very soon!

We’ve pulled together all of the locations from this blog onto one map to show the current spread of Meeting Centres. It’s probably already out of date though!! Apologies if we’ve missed anyone. Please feel free to get in touch and let us know if there are other Meeting Centres out there.

Map of the UK showing dots for each Meeting Centre that is open, coming soon, or has strong potential

Thanks to everyone for the tremendous work that’s gone in to getting all of these Meeting Centres up and running.