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.

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow


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