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. 

New App available

People have been asking us for ages if our highly popular suite of environmental assessment tools could be made available in an online rather than paper-based version, and we’re really excited to announce that an App is now available!

Originally developed as part of The King’s Fund’s Enhancing the Healing Environment programme, the suite of tools was reviewed and refreshed by the Association for Dementia Studies (ADS) in 2020 and expanded to include a tool for gardens and outdoor spaces in 2021. We’re pleased to say that an article we wrote about the review/refresh process has recently won an ‘Outstanding Paper’ award in the 2023 Emerald Literati Awards!!

Get involved!

At the Association for Dementia Studies (ADS) we often have work underway where we need input from different groups. When those groups are ones we’re directly working with on a research project reaching them is easier, but when they are from the wider general public it can be a bit more tricky. Although we try to promote our various surveys via different routes including social media, they can sometimes get a bit lost so we thought we’d use this blog post to highlight three current surveys and bring them to your attention.

Crossing the Line

In early June we launched our Crossing the Line survey which aims to explore the experiences of family carers who provide personal care for a person with dementia. As mentioned in a previous blog post the survey is open to anyone who is a family carer with current or previous experience (within the past ten years) of providing personal care for someone with dementia. If that’s you and you’d like to get involved, you can complete the survey online using this link – link to survey.

The survey is also available in Welsh or you can request paper copies by contacting p.finlay@worc.ac.uk

Can you help?

Here at the Association for Dementia Studies we are always coming up with ideas for future research that we’d like to do, but it’s really important that there’s a good reason for the research rather than us just going off and doing our own thing! When we’re working on funding bids, it’s useful to get input and feedback from all relevant parties involved to make sure we’re looking at the right things. This is often called PPI (patient and public involvement) or sometimes PPPIE (patient, public and practitioner involvement and engagement), but basically means getting people involved in how research is planned and conducted rather than just seeing people as research participants.

That’s a really long-winded way of asking for your help. We’re working on a funding bid for a future research project and need some input. If you work in a care home and have experience of using environmental assessment tools to make changes to your environment, we would love to hear from you. We are inviting you to share your experiences in a short anonymous survey to get a feel for how such tools are being used in practice and what sort of changes are being made to the environment as a result. Any information you provide in the survey will not be included in any research, but will help to inform our funding bid.

May madness

It feels like I say this quite often, but as the Association for Dementia Studies is doing a lot at the moment, we thought it would be useful to take stock and draw breath in this week’s blog. Here’s an overview of what’s going on.

Education and training

Our PGCert students have recently submitted their final assignments so our lecturers are busy marking. Before we know it, we’ll be welcoming a new cohort of students on our September modules! If you would like to be one of them, please have a look at our website or watch our new short video. A reminder to current and former students – you are eligible for the Hennell Award so why not apply!?

The next cohort of the 5-week Meeting Centre online training starts later this month, and this time is being facilitated by Kirrie Connections. If this is too short notice, don’t worry, we’ll be running another cohort in July. Have a look at our website for full details and how to register for either course. We’re also working on developing Meeting Centre training for other audiences, so keep an eye open for further updates.

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.
  • Link to Know Your Place Worcester survey
  • Link to Life Stories Herefordshire and Worcestershire survey
• 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!

Designing for Everyone

A suite of environmental assessment tools for health centres (also known as primary care centres/GP premises) has just been launched. These tools have been written by the Association for Dementia Studies for Assura plc who design, build and lease health centres across the UK.

Assura wanted to ensure that their health centres were supportive to people living with dementia, learning disability, autism and neurodiversity. It is thought that this is the first time work has been undertaken to look at the design features that are important to all these groups. The Patients Association and Dimensions, a charity that support people with learning disabilities and autism, provided reports on patients’ views of the health centre environment which for the first time confirmed how important the environment was to the patient experience and the delivery of high quality patient care.

We found through reviews of the literature and best practice that despite the vast majority of patient contacts in the NHS taking place in health centres – at least in normal ‘non-Covid’ circumstances – little work has been undertaken to look at the design of these premises for patients including people living with dementia and other neurodiverse conditions.

Is your garden dementia friendly?

The Covid-19 pandemic has drawn particular attention to the need for better use of outdoor spaces by everyone. Last Autumn the Association for Dementia Studies launched an environmental assessment tool for gardens which has proved a very popular addition to our suite of assessment tools. As part of this work we have now launched Making your garden dementia-friendly a free resource for people living at home with dementia, their carers and families. 

Getting ready for the academic year

With August rapidly disappearing, we’re putting the finishing touches to our Postgraduate Certificate in Person-Centred Dementia Studies modules which will be running from September. They’ve all run before, so it’s mainly a case of making a few tweaks based on student feedback and adding in any new information to keep them current. It’s not too late to enrol if you’re interested in studying with us (or get ahead of the game and get sorted early for a January start!), and don’t forget you can sign up for a single module before making a decision about whether to do the full Postgraduate Certificate. So what can you study?

Starting in September

• MDEM4001 Person-Centred Leadership: The VIPS Approach – Nicola Jacobson-Wright will be leading this module, and this is the mandatory module if you’re doing the full PGCert. On this module Nicola will be focusing on the development of the students’ leadership skills to critically analyse service provision for people living with dementia from the perspective of the person living with dementia, and how they can lead services to work better from this perspective.
• MDEM4004 Supporting People Living with Advanced Dementia – On this module, Mary Bruce will be encouraging students to consider the important aspects of care planning and approaches to support relevant to the care of people living with advanced dementia. Students will consider the utility of identifying and defining advanced dementia and consider the ways in which this impacts upon the person, their family, health and social care professionals and other agencies delivering support.
• MDEM4005 Enabling Environments for People Living with Dementia – Led by Teresa Atkinson, this module will help students understand how opportunities and constraints in any given environment can impact on people with dementia is important to supporting well-being and the citizenship of people living with dementia regardless of where they reside. This module examines the creation of dementia friendly communities, enabling environments in the home and health care settings, as well as the contribution of the person-environment fit to well-being, autonomy and preservation of self and identity.

Did you see…?

We try to have a new blog post every week, but realise that it can be easy for some posts to be missed when life is busy or we’re caught up with work. Every now and again we like to take stock and do a quick recap of a few posts to give them a second chance to be seen. Here are the ones we’ve chosen this time:

• How to use the environmental assessment tools – If you’ve seen us talking about the different environmental assessment tools we’ve got, but aren’t quite sure how to use them in practice, this is a good blog to look at. Don’t forget though, that since this blog post was written we’ve now got the garden assessment tool as well.
• A roundup of the CHARM research projects – As part of the CHARM project multiple different research projects were carried out in care homes, and this handy blog post brings them all together in one post so you can see what went on. There’s also a link to the CHARM framework manual which you may find useful to have a copy of.
• Finding out what people value about Meeting Centres – We’ve currently got a survey open for family members and carers of people with dementia who attend Meeting Centres to help us find out what is important to them. Information about the survey and a link to complete it can be found in this blog post.
• Introducing CAMBUS – An initiative that started recently was the ‘Coffee and Memory Bus’ which is acting as a form of outreach for people with memory concerns in Herefordshire and Worcestershire. This blog post tells you more about what they offer and has a link to the website where you can find out where they’re going to be on what days.
• 12 resources you should know about – In the run-up to Christmas (that feels like ages ago!) we told you about a different resource every day on social media then brought them together in one blog post. A handy one to look at if you need a quick reminder of the resources we’ve been involved with. You might even find ones that you didn’t realise existed but are really useful for what you’re doing.

So if you missed any of these the first time round please do take a look, or maybe you just want to remind yourself what they were about.

Don’t forget, you can look through all of our old blog posts by scrolling down, or by clicking on one of the ‘categories’ to the right of the page to see all posts about different topics.

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