Having an impact

Starting a new year can often make people a bit reflective, and here at the Association for Dementia Studies we’re no different. We’ve been involved in numerous research projects over the years, with a lot of that research feeding into and underpinning our education. While we’re proud of what we’ve done, it tends to be a bit odd when a project finishes as we don’t always get to see what happens next. Who reads our reports and takes any recommendations on board? Who uses our resources and makes a change as a result? Who takes their learning back to the workplace and makes a change to their practice or work setting? Who benefits from what we’re doing and are they local, national or even international?

Basically, how do we know that we’re having an impact and how significant is that?

In terms of our education, we do get some feedback from students if their course involves completing a short project or if they apply for the Hennell Award where they are required to show what they’ve done as a result of being on one of our courses. With our research it can be trickier, especially if the output is a resource that can be freely downloaded. How can we reach people if we don’t know who they are? We often don’t have the time and resources to do any follow-up activities either, as other research projects have generally taken over.

So what can we do?

We’re currently in the process of exploring different options, but a couple of things we’ve already put in place are:

  • Providing students on our Postgraduate Certificate modules with a template document encouraging them to keep a record of any changes they make to their practice as a result of their studies. While this can be useful for us if we want to ask students for any examples, it can also give the students themselves a bit of a boost to see what they’ve achieved.
  • Having feedback surveys available alongside some of our resources, such as the CHARM framework manual. When people go to download a copy of the manual they will also see a link to a survey asking them to say how they’ve used the manual in their work. It doesn’t always pan out as it relies on people remembering and being willing to complete the survey once they’ve had time to use the manual, but it’s better than nothing.

Hopefully we’ll have other options available soon, but if you ever see any requests from us asking for feedback please consider taking the time to get involved. We’d really appreciate it, even if it’s not particularly positive, as it will help us to improve and know that our work is having some form of impact. You can also just email us with any comments or examples of what you’ve been doing, you don’t need to wait for us to ask (please send anything to j.bray@worc.ac.uk and put ‘impact/feedback’ in the email subject line). Thank you!

Standing on the shoulders of giants

In the final Meeting Centres webinar of 2022 we got a bit nostalgic by taking a look back at how far the work around Meeting Centres has come in the UK, as well as looking at current work and plans for the future.

Dr Shirley Evans, Interim Director of the Association for Dementia Studies (ADS) and guru of all things Meeting Centre-related, began the webinar by providing a bit of history about Meeting Centres and how they came to be in the UK. Shirley recognised the roles of Professor Rose-Marie Dröes and Emeritus Professor Dawn Brooker MBE, showing the two following short videos to provide context and extra information about Meeting Centres.

It was interesting to see how much progress has been made since the videos were originally filmed, not just in the UK but also in the Netherlands, and also what has remained constant such as the underpinning ethos of supporting people to adjust to the changes brought about by a dementia diagnosis and the Essential Features of a Meeting Centre.

Shirley handed over to Jennifer Bray, ADS Research Assistant, who picked up on some of the points raised in the video clips to reiterate how Meeting Centres first came to the UK and how various research projects have supported their development and spread. The current focus is on the Community of Learning and Practice where people at different stages of setting up and running Meeting Centres can ask questions and share their knowledge and experiences, as well as updating and maintaining resources that were developed as part of the original Meeting Centres research.

Slide showing the progression between different Meeting Centre projects from the 1990's in the Netherlands to the present

An important factor of Meeting Centres is that they are evidence based, so Jen provided a summary highlighting some of the main findings from the research so far, such as improved self-esteem, feelings of happiness and sense of belonging for people with dementia, and family carers experiencing less burden and feeling better able to cope. The spread of Meeting Centres across the UK was also acknowledged, starting with one pilot in Droitwich Spa, moving to further demonstrator sites in Leominster, Powys and Kirriemuir, and now being at around 50 UK Meeting Centres with more emerging almost on a weekly basis.

Jen finished by looking at the possible scope for research involving Meeting Centres, ranging from Meeting Centres being the core focus of a project, to Meeting Centres being used as an example alongside other services, or as a place to pilot different interventions with a group of people affected by dementia.

Slide showing the different ways in which Meeting Centres might be involved in research

Research Associate Thomas Morton picked up the baton and talked about some of the research that has involved Meeting Centres in various ways. For example, SCI-Dem included Meeting Centres as an example of a community-based intervention, we’ve got a PhD studentship focusing on Meeting Centres, the Worcestershire Meeting Centre Community Support Programme aimed to set up multiple Meeting Centres across Worcestershire, and the Leominster Meeting Centre Heritage Project used the Meeting Centre as a base for various heritage-related interventions.

Thomas provided a bit more detail about our ongoing ‘Get Real with Meeting Centres’ project which is due to end in early 2023. Although it’s been the topic of a previous webinar, it was useful to have a recap of the project and view it in light of the evolution of Meeting Centre research in the UK. It’s looking at the experiences of people attending, running and support Meeting Centres and is currently in the process of analysing all of the data to find out what it all means! Based on what people are saying, the findings will be focusing on four main areas or ‘systems’:

  • Membership
  • Finance
  • Internal relationships
  • External relationships

Thomas and the team will be exploring each area in greater detail to identify different aspects (with supporting quotes from the data) relating to sustainability. An example is shown below.

Slide showing the four areas or systems, a breakdown of 'membership' and an example saying 'IF use of a venue is not fixed - THEN this may discourage members - BECAUSE they will find it disorientating and upsetting and may not have confidence in the MCs future' plus a selection of quotes to support this view

We will be pulling all of the information together around a number of different themes, and producing a series of recommendations to (hopefully) help Meeting Centres be more sustainable in the future. These will be disseminated through various project outputs with different audiences in mind.

Slide showing some of the themes arising, such as 'Membership: What's attractive to people, what might put people off, issues with referrals, links with H&SC etc.' and 'Venue choices and location issues (inc. transport and rurality)'.

Thomas ended his section by looking at potential future Meeting Centre-related research, mentioning a current bid looking at the role of food in different settings, where Meeting Centres are included alongside other initiatives such as dementia cafes and lunch clubs. Similarly, other ideas such as physical activity could use Meeting Centres as an example or base for piloting possible interventions.

Shirley brought the webinar presentation to an end by pulling everything together in an overall summary. Ultimately, in the past eight years there has been significant progress and developments across the UK, despite the pandemic.

Slide summarising some of the main achievements around Meeting Centres, such as 'over 50 funded MCs with significant momentum in a number of areas' and 'the development of a 5-week online course for MC staff, volunteers and trustees which has now run four times and has evaluated very positively'.

We’re currently working on a three- and five-year plan to consolidate the current national and regional networks, with some activities being devolved to different nations. We’re hoping to get to a point where there is a self-sustaining model in place, and a central body established to provide continuity, connection and quality assurance.

Our overall vision though? To have a Meeting Centre in every town.

Thanks to our presenters, and if you missed the webinar or want to watch it again you can find the recording here.

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

Connect with Meeting Centres on twitter @MeetingCentres

Different countries, same goals

For this week’s blog we hand over to Teresa Atkinson to hear about her experience of presenting at a symposium in the Netherlands.

Mantelzorger Samen – Caregiver together

My recent trip to the Netherlands taught me many things: some new words, some new skills but above all, how aligned we are in our aims to support the post diagnostic needs of those affected by dementia.

In 2019 it was our pleasure to welcome Marleenje Prins to the Association for Dementia Studies (ADS) for three months whilst she worked on her PhD. Marleenje lives in Amsterdam and works at the Trimbos Institute in Utrecht. The Institute focuses on a wide range of issues including addictions, youth and older adults. I was kindly invited to take part in their recent symposium: Hoe om te gaan met de diagnose dementie? (How do we deal with a diagnosis of dementia?). The symposium was presented both face-to-face and online, attended by over 80 participants from across the Netherlands. The main focus was to share the findings of the evaluation of the Dutch version of the SHARE project. I was also able to ‘share’ the post-diagnostic support work taking place in the UK. A recording of the symposium is available via this link (Teresa’s presentation starts at 3:09:50)

Montage of three photos showing: the four presenters at the symposium stood in front of the slides, the building where the symposium took place, and bikes on a bridge over a canal in Amsterdam

The Netherlands has a population of 17.4 million and around 290,000 people living with dementia meaning their percentage at 1.7 is slighter higher than our 1.3% in the UK. Similar again to the UK, three quarters of the people with dementia live at home.

As you will know from previous blogs, our Meeting Centre work derived from that developed in the Netherlands, so there is a great tradition of post-diagnostic support there including:

  • Daytime activities (dagbesteding): emphasis is on fun and relaxation

  • Day treatment (dagbehandeling): guidance is in the hands of a multidisciplinary team with specialized carers

  • Day care (dagopvang, called living room project): emphasis on drinking coffee and eating together, playing games, etc.

  • Care farms (zorgboerderijen) with specialized care for people with dementia

  • Meeting Centers (ontmoetingscentra) with specialized care for people with dementia

The focus of Marleenjte’s current work is also very aligned with the work we are doing here at ADS. The LAD Study (Living arrangements for people with dementia) has been running since 2008 and is currently about to begin its new wave of data collection considering, amongst other things, what type of living arrangements and integrated care work best to support the quality of life for people with dementia. We are looking forward to sharing findings from our DemECH project with Marleenjte’s team which focuses on how people with dementia can be supported to live well in Extra Care Housing.

I am hopeful that strong ties can be maintained with Marleenjte and her team. We may have a different language and work within different countries, but our issues and our goals are the same. We want the best possible life for people living with dementia and the families and friends who support them.

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

UK Dementia Congress 2022

After a pause due to the pandemic the UK Dementia Congress was back to being held in person, and this year it took place at Aston University Conference Centre on 8th-9th November. Although it was a smaller affair that previously, it provided a great opportunity to get back to networking, and made it possible for many of the Association for Dementia Studies (ADS) team – past and present – to meet up en masse. (I’m not sure what the collective noun for a group of ADS colleagues would be, but perhaps it’s best not to go there!)

We had a good presence at the conference including:

Montage of photos showing Shirley and Nathan presenting next to slides projected onto a screen.
Montage of photos showing our stand and some of the leaflets and resources on it
  • A symposium on Meeting Centres which brought together people from established Meeting Centres in Kirriemuir and Powys, a new Meeting Centre in Sandwell and emerging Meeting Centres in Hampshire, as well as highlighting the importance of our online Meeting Centre training.
Montage of photos showing the presenters in action during the symposium
  • A presentation from Dr Becky Oatley on the DemECH project, looking at “What is the ‘extra’ in extra care housing?”
photo of Becky presenting in front of a room of people
  • A whole range of posters about various projects and resources.
Montage showing photos of our six posters
  • A book launch featuring the ‘Reconsidering Dementia’ series, with the book ‘Considering Leisure in the Context of Dementia’ being edited by members of the team and including chapters that they have authored.
  • An early bird movement session co-facilitated by Nicola Jacobson-Wright, using dance as a way to reconnect post-pandemic. It got everyone off to a great start and sounded like a lot of fun.
  • A symposium on our education offerings, covering not just the Postgraduate Certificate but also our Meeting Centre training, Championing Physical Activity course, and bespoke courses for individual care providers. The session was delivered by our teaching team of Dr Chris Russell, Mary Bruce, Teresa Atkinson and Nicola Jacobson-Wright, and it was great to include two short video clips to highlight some of our course content created by people with lived experience of dementia, and feedback from some our students. As part of the symposium we were privileged to present the 2022 Hennell Award to student Stuart Wright, recognising their work after studying on our module ‘Expert practice in delivering person-centred dementia care’.
Montage of photos showing the teaching team presenting, Stu receiving his award, and some of the ADS team past and present

Attending other sessions also gave us the opportunity to learn about all sorts of different work going on across the country, trigger new ideas, make new connections and expand our networks. Thanks go to the organisers and also to our own admin team for making sure that we all got their ok (despite the disruption caused by the on/off rail strikes) and we had all the resources for our stand.

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

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
Continue reading “It’s all about the research!”

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.

Continue reading Alzheimer Europe Conference

Combining two different roles

This week we hear from Teresa Atkinson who is a Senior Research Fellow here at the Association for Dementia Studies (ADS) but also a lecturer on our Postgraduate Certificate in Person-Centred Dementia Studies, specifically the modules around enabling environments and supporting family carers. Over to you Teresa…

Being a lecturer and a researcher is an interesting journey full of self-reflection and constant learning. In this week’s blog, I bring together a number of things that have happened recently which I’ve been reflecting on.

As a researcher of 20+ years (where did that go!) I have listened to the voices of people affected by their cognitive impairment in many walks of life. This was what excited me to become involved in training and now in education – sharing the stories and experiences of the many voices I had heard to help professionals in practice to understand the funny, sad and interesting lives of the people we support.

As an educator, I’m deeply proud of the work we do at ADS to share our knowledge; knowledge which comes from years of practice and years of research. But this is also a learning journey for me; learning from people affected by dementia; learning from our students (all professionals in practice) and learning from my colleagues.

Continue reading “Combining two different roles”

Herefordshire Dementia Voices

We’ve been remiss in not telling you about one of our current projects, so we thought we’d use this week’s blog to put that right!

First off, the Herefordshire Dementia Voices project isn’t actually a project we’re delivering. That’s being done by Dementia Matters Here(fordshire), and our role at the Association for Dementia Studies (ADS) is to be a separate group sitting alongside the project to evaluate its effectiveness. Before saying what we’re doing, it probably makes sense to tell you a bit about the project itself.

Herefordshire Dementia Voices – a bit of background

People with dementia and their families have been some of the most adversely affected by the pandemic in terms of health and well-being and social isolation. With funding from the National Lottery Community Fund, Dementia Matters Here are delivering the Herefordshire Dementia Voices project to put people with dementia in the lead and help identify what they need and want in terms of support, both in the light of the pandemic and moving forward.

Continue reading Herefordshire Dementia Voices

Making a change

One of the current projects that we’re involved with at the Association for Dementia Studies (ADS) is called ‘Herefordshire Dementia Voices’. The project is being led by Dementia Matters Here and aims to help identify what people affected by dementia need and want in terms of support in the county, both in the light of the pandemic and moving forward. Multiple activities are – and will be – taking place to find and hear the voices of people affected by dementia, including interviews, focus groups, questionnaires, Dementia Friends Sessions, events, blogs, newsletters and support to establish dementia friendly communities and support groups.

At ADS, our role is to evaluate the overall effectiveness of the project to explore to what extent the voices of people affected by dementia have been identified and heard. As part of that evaluation, we’re using a ‘Theory of Change’ approach. This is a new approach for us, so it’s been a bit of a learning process (like getting to grips with soft systems for the Get Real project!), but this week we had our first workshop with members of the Herefordshire Dementia Voices Steering Group to start looking at how Theory of Change can be applied to their project. We’re not going to try and explain it in any detail here, but ultimately we wanted to explore not just what is happening in the project and changing as a result, but also how and why things are happening and changing. It encourages us to consider how change happens in both the short-term and the long-term, and the myriad of factors that affect change for projects such as this (complex social interventions). It’s an iterative and recursive process that involves mapping the various elements of the project in a visual format, getting input from relevant stakeholders to make sure that we’re capturing everything, and refining our view of the project through their real-life experiences. This was just the first of three planned workshops to help form our initial project map, with further workshops taking place later in the project as it progresses.

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Working both sides of the door

Leominster Meeting Centre Heritage Project: working both sides of the door

This month’s webinar was a true hybrid affair, with some people attending and presenting online while others had assembled in the Town Council Chambers in Leominster. The webinar was planned as a showcase of the Heritage Pathfinders project which has taken place at the Leominster Meeting Centre. A lot of information was shared during the webinar and this blog will never do it justice, but we hope it gives a flavour of what was presented and encourage you to watch the recordings to hear it directly from those involved.

You can find the recordings of the two parts of the webinar here and here.

Hosting the webinar was Tim Senior from supersum, one of the project partners, who gave a bit of background to the programme. Twelve projects from individual Heritage Pathfinders were proposed and taken forward during the programme, looking at a wide variety of different avenues for engaging members and carers at Leominster Meeting Centre with heritage. The programme was funded by the Tudor Trust and Herefordshire Community Foundation.

Continue reading “Working both sides of the door”