A period of change

As usual, there’s a lot going on within the Association for Dementia Studies at the moment, so to help you (and us!) keep track here’s a brief update.

Coming to an end

We’ve got a few projects due to finish in the next couple of months, such as:

  • The Herefordshire Dementia Voices (HDV) evaluation, which is looking at the extent to which the HDV project met its intended outcomes of finding and hearing the voices of people affected by dementia. If you’d like to share your views on this project, you don’t have long – our online survey closes very soon so don’t miss out!
  • Worcester Life Stories, which comprises two online platforms (Know Your Place and Life Stories Herefordshire and Worcestershire) has been the subject of a few previous blogs, and again you don’t have much time to share your views and feedback with us using the following surveys.
  • The Get Real with Meeting Centres project is in its final phase of pulling all of our findings together and working out how to present and share them with different audiences. We’re consulting with various stakeholders to make sure we get it right, and have some exciting plans for creating both booklets and videos to explore different ways of making our findings accessible.
  • The ‘Embed’ phase of our Meeting Centres work is due to end soon, but have no fear! We’ll be continuing to work on Meeting Centres, primarily focusing on keeping our existing Meeting Centre network going and continuing to support new Meeting Centres to get up and running.
  • The DemECH project which has been looking at Supporting People Living with Dementia In Extra Care Housing is in the reporting phase, and we hope to be able to share the outputs with you in the near future.

Beyond research, our September cohort of students on our Postgraduate Certificate in Person-Centred Dementia Studies has recently submitted their final assignments, so best of luck to everyone!

Getting going

We do have quite a few things just starting up (and others in the pipeline that we can’t quite tell you about yet!), such as:

  • A new project is Crossing the Line, which is looking at the challenges faced by family carers relating to providing personal care for people living with dementia. Keep an eye out for more information about this project in the future as it gets going properly.
  • Another project is an evaluation of a new staff role that’s been created within a care-enabled assisted living scheme for older people, with the aim of improving engagement and reducing loneliness among their community. It’s in the early stages, but looks like an exciting project so far!
  • We’re also very pleased to be undertaking some work to develop a suite of apps based on the existing Dementia Friendly Environmental Assessment Tools. Again, this hasn’t been going for very long, but it’s already looking great – watch this space for updates!

Our new cohort of Postgraduate Certificate students has just started, and several other courses (both online and in person) have also got going in January with others starting soon. Looking slightly further ahead, we’ve got new cohorts of our Meeting Centres online training and Championing Physical Activity for People Affected by Dementia (online) starting in April, so have a look at the relevant information and get in touch if you are interested in either of those.

Nothing ever stands still at the Association for Dementia Studies, but we’ll try to keep you updated with our news in the future.

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

Course options – what can you study?

Last week our blog told you that if you’ve studied with us on any of our courses you were eligible to be nominated for the Hennell Award, so this week we thought we’d tell you a bit more about the courses themselves! Using the list from last week:

Postgraduate Certificate in Person-Centred Dementia Studies

Hopefully it won’t be a surprise to any of you that we offer a fully online Postgraduate Certificate in Person-Centred Dementia Studies, as we’ve mentioned it just a few times in previous blogs! We’ve got a range of modules available covering different aspects of dementia, and different ways to study.

  • You can do the whole Postgraduate Certificate (60 credits)
  • You can do the Postgraduate Award, which is a double module (30 credits)
  • You can study an individual module that particularly takes your interest (15 credits). If you enjoy it, you can always go on to do other modules or complete the Certificate, so it’s a non-committal way to see how you get on.

Our new cohort of students has just started, but the next modules will begin in September. If it’s the sort of thing you’ve been considering, or maybe you’ve got a few questions to work out if it’s right for you, please have a look at our website and get in touch. You’re not committing to anything, so it won’t hurt to ask, and there’s no such thing as a silly question!

Courses for professional groups and organisations

It’s actually quite difficult to tell you much about these courses as there isn’t a ‘standard’ course and any education would be tailored to the requirements and particular areas of interest of the target audience. Our courses are delivered using a combination of online and face-to-face options. It’s worth noting though that we are pretty much fully-booked for 2023, so while we welcome enquiries we would be unlikely to look at course delivery for a good few months. It’s always good to plan ahead though!

Meeting Centres online training

Anyone looking to initiate and run a Meeting Centre – or anyone who works or volunteers at one – should take a look at this 5-week online course. It will support you to consider the different elements that make up a Meeting Centre and explore the practicalities of implementing it. This will include looking at:

  • The Meeting Centre ethos
  • The Essential Features of a Meeting Centre
  • The Adjusting to Change model and how this model can be used in practice to support both members with dementia and family carers
  • The physical, social and psychological effect of movement on individuals, with the opportunity for staff/volunteers to start to consider how this can be incorporated into the Meeting Centres programme.

We’ve got dates set up throughout 2023, with the next course starting at the beginning of April. You can find out more about the course and the dates on our website.

Championing Physical Activity for People Affected by Dementia

This fully online course will develop your knowledge and confidence in facilitating physical activity for people affected by dementia. You will have the opportunity to learn from experts in the dementia and physical activity fields, as well as hear directly from the those with lived experience of dementia. It’s suitable for anyone working with people living with dementia or family carers, whose role involves the provision of physical activity. You might work or volunteer in care, health, housing, sport, leisure, or community-based services.

The course will enable you to:

  • Deliver physical activities and exercise which best suit individual wishes, as well as those of everyone in the group.
  • Understand the benefits for people affected by dementia taking part in physical activity and exercise.
  • Encourage and support people to participate, and know how and why to involve family carers in physical activities.

The next iteration of the course will be starting in April, with live sessions taking place on Tuesday mornings. Please see the flyer below for more information, and use the contact details within it to ask any questions.

Hopefully that gives you a flavour of our education and training, and maybe even encourages you to think about studying with us.

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

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

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

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.

Continue reading “New Meeting Centre training coming up”

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:

Continue reading What’s going on with Get Real?

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.

Continue reading “Meeting Centres in Scotland – a story in two parts”