Busy times in May

It’s not like we sit around twiddling our thumbs at other times, but Dementia Action Week in May is looking particularly busy for us.

To start with, Age UK Herefordshire & Worcestershire and The Hive, Worcester are hosting a series of events and activities, and we’re part of three sessions.

On Monday 13^th May Thomas Morton will be talking about ‘Doing Things with Dementia: Exploring Support to Keep People Connected’. Dementia research in the news is nearly always about finding a cure, but just as important is how we can support the nearly 1 million people (and growing) who are living with dementia right now. While a diagnosis of dementia is life changing, people can still live full and active lives with the condition – but support in the community needs to be better. Thomas will talk about the work we do to improve this situation, including initiatives like Meeting Centres that aim to connect people to their communities and each other. He will talk about what Meeting Centres are, who can go and what people do there, as well as the wider research that the Association for Dementia Studies does – and opportunities for people to get involved!

You can attend the session for free but need to book a place here.

On Tuesday 14^th May Dr Chris Russell will be part of a ‘Behind the Cover’ session with his co-editors of the ‘Leisure and Everyday Life with Dementia’ book. The book examines leisure in the everyday lives of people living with dementia and challenges readers to consider the role of leisure activities beyond their potential for therapeutic benefit. Dr Russell leads the Postgraduate Certificate in Person-Centred Dementia Studies, is the Patient and Public Involvement Lead for the ‘Get Real with Meeting Centres’ research project, and a Dementia Knowledge Exchange Peer Reviewer with the World Health Organization. He also runs a popular ‘Championing Physical Activity for People Affected by Dementia‘ course.

Again, places for the session are free but must be booked.

Our final talk at The Hive is also on Tuesday 14th May and is looking at ‘Dementia and the physical environment: what improvements can we make?’ In this session, Teresa Atkinson will be looking at how dementia and the physical environment interact. You’ll learn about some of the symptoms of dementia and the impact these can have, before exploring how dementia friendly design can help. The session will cover the principles of dementia friendly environments, helping you to be more aware of your surroundings, before focusing on changes that can be made within the home and also within the garden. You’ll also have the opportunity to ask questions and get information about useful resources. 

To book your free place use this link.

Our Meeting Centre family blanket will also be on display so if you haven’t seen it yet this could be a great opportunity.

If that wasn’t enough, we’re also part of the 2024 Pint of Science events in Worcester which takes place each evening from Monday 13^th to Wednesday 15^th May. Organised by the University of Worcester’s Doctoral School, the Pint of Science festival has academics providing talks on a wide variety of topics.

Thomas Morton will be presenting on 13^th May as part of a session on ‘Doing Health Research Differently’. If you missed his talk earlier in the day at The Hive, this is a second chance as he will be covering many of the same talking points. Tickets for each Pint of Science session are £5 and can be booked via their website.

Still want more? Maybe you’re not based in Worcester and are feeling a bit left out? Well, you’re in luck. On 17^th May (12 noon to 1pm), we will be hosting an online webinar that anyone can join! The webinar will be about ‘Past and Future of the Meeting Centre Support Programme in a contrasting economic context’ and we’re delighted that Sladana Pavkovic will be presenting. Sladana is from the University of Tasmania, and will delve into the Australian Meeting Centre Support Programme (MCSP), tracing its trajectory from pilot project to the establishment of two centres and subsequent challenges. She will discuss the evolving perspectives on revitalizing and adapting the MCSP model in a high-income Australian context, and the possibility to implement the program in a low-income setting such as Serbia.

Sladana is a third year PhD candidate in Dementia Studies at the Wicking Dementia Centre, University of Tasmania. Since 2020 and up to the present day, she has also taken the role of a part-time lecturer at the Wicking Centre. Since 2012 she has functioned as a “tele-care partner” and educator for her family residing in Serbia. Her primary aim has been to provide them with support and guidance in coping with her mother’s dementia. She has been involved in her care journey from the first onset of her symptoms, through the diagnostic process, active life with dementia, all the way to palliative care and her death in September 2023.

You can join the webinar using this link.

Phew! I think that’s more than enough for us to be getting on with, but who knows, we may find something extra to do that week!

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

We’re also on Instagram, Threads and LinkedIn so have a look and find us there too. 

Get Real – impact survey

Last year we completed our ‘Get Real with Meeting Centres’ project, which was investigating the challenges that face community-based group support for people living with dementia – such as Meeting Centres – in keeping going long term.

This project has certainly informed us in our thinking about the role of such community initiatives in the dementia pathway, and in particular about how Meeting Centres in the UK can function going forward. But we also want to know what everyone else thought – i.e. those we work with and alongside.

It’s now more than 6 months since we held our big celebration event to mark the end of the Get Real project and share our results. At that event we unveiled three booklets aimed at three different audiences, as well as a series of videos on different topics, regarding what we had learnt in the project:

Booklets

• What you can do to help your Meeting Centre: Suggestions for people who attend Meeting Centres
• Keeping Meeting Centres going long term: Recommendations for people running Meeting Centres
• Sustaining Meeting Centres and similar community-led dementia support: Suggestions for health and care professionals

Videos

• Referrals and the dementia care pathway
• Reaching people and membership
• Carer benefit and engagement
• Venue and location
• External relationships and collaboration
• Internal relationships and working practices
• Finances and funding

Time for feedback

Now that a little time has passed, we want to ask people who have read and seen these for a little feedback on them – what they thought of them, how they used them, if they passed them on to anyone (and if so, who?), and what was most useful or less useful about them. This will help us to gauge any impact from the study and also inform how we do things in future projects.

If you came along to our ‘Get Real Celebration Event’ on July 12 last year – or if you have simply encountered these resources since – please take the time to let us know what you think by completing this short survey. We much appreciate it!

For more information on the Get Real with Meeting Centres project, please visit the dedicated blog site.

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

We’re also on Instagram, Threads and LinkedIn so have a look and find us there too. 

Crossing the Line workshop

On 29^th January we brought together around 20 people to take part in the first of three Crossing the Line co-production workshops to help us translate our study findings into free resources for family carers and professionals. Following a welcome from Professor Tracey Williamson we had an introduction to the Crossing the Line project from Sue Briggs, a PPI (Patient and Public Involvement) representative who is also an expert by experience. Sue very generously shared her experience of caring for her husband and why being involved in the project was important to her. It was a powerful way to start the day and highlighted some of the issues that we would go on to discuss throughout the workshop, as well as the importance of the project itself.

For those who may not know, the Crossing the Line project aims to gain a deep understanding of the experiences of family carers relating to their provision of personal care to people living with dementia. Dr Shirley Evans helped to set the scene for the day by reminding the group of the aims of the project and how the research had been progressing.

Sue and Shirley presenting

Next up, Thomas Morton and Faith Frost gave an overview of the findings so far, based on nearly 300 survey responses and 28 interviews with family carers. The amount, and depth, of the information gathered through these methods was incredible and has given the project team a lot to explore and investigate. One interesting point to note from the initial findings was that carers have no time and energy to seek out help or information, let alone engage with it, which is concerning as the onus is often on carers to be proactive rather than support being offered. This was a key point for the research team to take on board as it will influence the project outputs and the need to make them accessible, practical and easy to use.

Going through some of the emerging themes initiated some good discussions within the group, helping us to capture additional perspectives and points to feed into the findings. It was also a useful way to get us all on the same page and starting to think about some of the challenges – and also positives – arising from providing personal care. Some of the overarching areas being considered included:

• Types of personal care
• How prepared people felt to provide personal care
• Strategies to help do personal care
• The emotional toll and coping
• Quality of support from care services

To think about the findings in more detail the group split into separate tables, where everyone had the space to reflect on and add to what had been presented so far. Judging by the amount of conversation that took place, the findings struck a chord with the group.

Faith and Thomas

Following a break for lunch, Emeritus Professor Dawn Brooker MBE led a session to consider how the research can get the findings into practice and actually make a difference to carers and the people they support. Two main areas to think about were the content and the format of possible resources, so these were discussed separately.

First up, content. Using a draft document as a starting point, table discussions helped to clarify the sorts of topics that need to be covered in the resources and in what style, for example the tone and language used. It looks like there won’t be any shying away from tricky topics!

Dawn leading group activities

After some great discussion it was time to focus on the format of the resources for different audiences. It was clear that in order to make a difference any resources need to be easily accessible and available to as many people as possible. Keeping the resources simple, practical and in both web-based and paper-based format was key, as was exploring avenues for dissemination such as through professionals, via organisation websites, through local carer groups, and via social media. With that in mind, if you would like us to let you know how to access the resources (when they’re finished, obviously), please provide some contact details in this short expression of interest form.

Professor Tracey Williamson brought the day to a close by thanking everyone for their time and input to a hugely successful day. There is a wealth of information and ideas for the project team to go through and incorporate into the next stage, before we start planning for the next workshop!

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

We’re also on Instagram, Threads and LinkedIn so have a look and find us there too. 

A busy start to the year

As January gets properly underway and we settle back into work, it seemed like an appropriate time to take a quick look at some of the research projects that we’re currently in the middle of.

• Crossing the Line – this project looking at family carer experiences of providing personal care to people with dementia is moving into its analysis phase to find out what our survey and interviews are telling us. We’re also planning for a series of three workshops over the next few months to help us convert the findings into resources that will actually make a difference. We’ve got a wealth of information, so there’s a lot going on.
• Meeting Centres – we’re continuing to support people setting up and running Meeting Centres across the UK and have various articles in progress to share our work more widely and continue adding to the Meeting Centre evidence base.
• Get Real with Meeting Centres – although the initial project has finished and the resources are out there for people to access and use, we’ve got some follow-up work going on the see what impact those resources are having in practice. There are also articles about different aspects of the project being written or recently submitted to journals, so hopefully we’ll have some good news to share with you soon!
• DemECH – our project about supporting people living with dementia in extra care housing ended last year, but again we have some follow-up work in progress. To go with the booklets from the original project, we’ve been developing an infographic and a series of videos to help share the findings with different audiences. Once they’re ready and we’ve made them available, we’ll be looking at how people are using them and what impact they’re having.
• Holdenhurst Community Link Worker evaluation – another project with analysis underway as we prepare an interim report. It’s been great to capture the views of tenants and staff to find out how their new Community Link Worker role has been panning out, we’ve just got the challenge now of condensing and summarising everything into a report!

There are also some new projects in the pipeline or about to start, and others that we’re waiting to hear back about, so plenty to keep us busy. This list doesn’t even cover the education and training courses that we’re involved with or the work being done by our fab PhD students who are at different stages in their studies, so as you can see, the blog title is quite appropriate!

An insight into the ADS office!

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

We’re also on Instagram and Threads, so have a look and find us there too. 

UK Dementia Congress 2023

A few years ago we wrote a blog about being at UK Dementia Congress (UKDC) from the start to the finish, and this year’s event in Birmingham was similar in that we were presenting from the opening address to the final session. Here’s a brief overview of what we got up to. We didn’t manage to get photos of everything, but hopefully you’ll get a flavour of the event. If you would like more information about any of our presentations or projects, please feel free to get in touch with us on social media or by email (dementia@worc.ac.uk). You can also find our more about our presenters by clicking on their names to go to their staff profiles on our website.

To kick things off, Dr Shirley Evans made the opening address of UKDC, saying how proud the Association for Dementia Studies (ADS) was to be Academic Partner of the event and giving some of our highlights from the past year. She then introduced two of our PhD students who talked briefly about their studies:

• Exploring stigma towards people living with dementia in Extra Care Housing – John Bosco Tumuhairwe
• Exploring re-partnered couples affected by dementia – Jen Edgecombe

Shirley welcoming people to UKDC

The less glamorous side of what we do

A lot of what we post on social media tends to be about out research outputs and resources as well as conference presentations, which can sometimes give a bit of a false impression about what our work involved. While this week we were at UK Dementia Congress (more on that in next week’s blog), we thought we’d let you in on some of the slightly less glamorous aspects of what we do at the Association for Dementia Studies (ADS).

If you see our stand at any conferences you hopefully see a fairly neat and organised display of some of our booklets and leaflets. However, under the table, and sometimes behind our banners, there tends to be a selection of boxes, bags, coats and luggage. You also hopefully don’t see the last-minute panics over slides as we make final changes or check that they’re on the right laptop in the right room!

Our stand at last year’s UKDC, plus the bits you don’t see!

Crossing the Line – September update

Our ‘Crossing the Line’ project on support for family carers providing personal care for people with dementia is forging ahead, and held its latest meeting with experts by experience in mid-September. The meeting provided an overview of progress on the project to date, before looking at what is left to do and what the next steps are. As a reminder of what the project is about, its aim and research questions are shown below.

Swans, plates and juggling – just a normal week

You know the saying about how swans look calm and elegant as they glide along but their legs are paddling furiously under the surface? Well that’s how it can feel at the Association for Dementia Studies (ADS) with lots going on behind the scenes, although occasionally we might seem a bit less serene and a bit more wind-swept! When you stop and think about everything that’s going on at ADS though, it’s perhaps not totally surprising, so this blog is partly about telling the team to take a breath and not to be too hard on themselves as we start the new academic year.

In many ways, the research cycle doesn’t exactly help. You start off with your idea which needs to be turned into a funding bid, but finding the right potential funder isn’t always easy. Writing the bid takes a lot of time and effort, and often requires coordination with different partners and PPI (patient and public involvement) work. Some funding streams can also have short timescales making the whole process quite stressful.

Crossing the Line project update

It’s been a few weeks since the last blog about our Crossing the Line project, so we thought it was about time to give you an update.

We have now reached nearly 200 responses to our survey of family carer experiences of providing personal care for a family member with dementia. Personal care includes a variety of different activities, such as helping with going to the toilet, dealing with any incontinence problems, washing, bathing, getting dressed and undressed, mouth care, shaving, hair care, foot and nail care.  

A huge thank you to those who have requested, shared and handed out the survey so far, and particularly to those of you who have taken the time to complete the survey!  
The survey is ongoing as we are still looking for additional responses, though we have already had some very detailed and insightful feedback from participants, which has helped us to refine the interview guide.

Leisure and dementia – conference reflections

This week we hand over to Dr Chris Russell as he reflects on attending and presenting at the Leisure Studies Association Conference held in Bournemouth in July 2023. Over to you Chris…

Leisure is tricky to define but precious. However we understand leisure, our leisure time and how we fill it will be fundamental to our sense of selves and how we live life. That is true for people living with dementia as much as anybody else. For these reasons, leisure is of great personal and professional interest. A new book, ‘Leisure and Everyday Life with Dementia’, co-edited by myself and colleagues Karen Gray and Jane Twigg, draws relevant learning together, and offers recommendations for practice, research and study.

Several years ago, during my PhD study, the Leisure Studies Association (LSA) was recommended to me. The LSA is a learned academic society which exists to promote leisure and thinking about leisure in academia and practice of all sorts. From bridge to basketball, from travel to theatre, and everything in between (and beyond). If you have an interest in leisure, why not join? You will struggle to find an association of colleagues more generous in their support, and collegiate in approach.