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.

Conferences and events

In Dementia Action Week we’ve got information stands at the Leominster Dementia Conference and The Worcester Dementia Action Alliance Awareness Event (both on 16^th May), as well as running a dementia awareness and information session for staff here at the University of Worcester on 17^th May supported by having a stand in the St John’s campus reception area.

We’ll also be at the Alzheimer’s Society Annual Conference in London on 18^th May, presenting at the Cornwall Dementia Conference down in Newquay on 19^th May and presenting at the 23rd International Conference on Integrated Care in Belgium later in the month. Busy times!

We’re also planning our Get Real event to launch and share the findings. Although it’s not until 12^th July, our plans are well underway, and if you would like to attend you can register here. As part of the event we’ll also be displaying our Meeting Centres family blanket so don’t forget to send in your squares!

Link to Meeting Centre Blanket flyer

If that wasn’t enough, we’ll be writing abstracts to submit to various conferences such as UK Dementia Congress later in the year to share findings from a whole host of our research projects.

Research and consultancy

We’ve got several research projects underway at various stages, so we’ll be working on these as well as writing articles for recently completed projects. Bid writing is also taking place with several bids taking shape quite nicely (fingers crossed!).

A work in progress is the development of an app version of the environmental assessment tools. The app is not quite at the point of being made available, but it’s not far away – watch this space.

We’re also working on a series of short videos relating to Meeting Centre data collection, both to help Meeting Centre staff understand what’s involved but also to help explain it to members and carers and encourage them to get involved. It’s another ‘coming soon’ situation, but hopefully the videos will be helpful to everyone.

Phew! Same again next month?

A new project is up and running!

Last week Senior Research Fellow Teresa Atkinson and Research Assistant Jen Bray got to go on a road trip to East Sussex to carry out the first stage of data collection on a new research project. They headed down to a new Abbeyfield housing scheme which is a care-enabled scheme – different to our previous experiences of extra care housing – that fits with Abbeyfield’s goals for combatting loneliness and social isolation. The scheme has developed a Community Link Worker role with the aim of enabling tenants who may be at risk of social isolation to enjoy an enriched lifestyle, reduce the impact of loneliness, and improve wellbeing.

Focusing on the little things

Sometimes it’s easy to get caught up with trying to make big changes or getting things happening at scale, but that means the little things can get overlooked. In this blog we’re going to celebrate a few small tweaks and changes that have happened recently, which have probably gone unnoticed so far!

• Updating our publications page – on our website we have a page where we share lists of our publications and knowledge exchange activities (if you didn’t know about that page, you do now!). We try to keep the lists updated, but when things are busy it doesn’t always happen as often as we’d like. We’re pleased to say that it’s all back on track now, and every time we update the lists it’s always a nice reminder of what we’ve been doing.
• Expanding our publications page – as well as updating our publications, we’ve added in a new section on that page to focus on resources. A lot of our research projects result in new (and more often than not, free!) resources. While we share these in relevant places on our website, we thought it would be useful to bring them together in one place, so we did!
• Sharing our new Meeting Centre videos – we’re very pleased with the two short videos created as part of the Worcestershire Meeting Centres Community Support Programme and have made sure that as well as sharing them on social media, they are also available on our website. In addition to providing links to them in our new resources section (see above), they are available on our Meeting Centres page.
• Sharing the DemECH booklets – following the recent launch at the House of Lords, links to download the three booklets from our DemECH research have been included in the relevant section on our current research webpage, and before you ask, yes they are also in our new resources section!
• Adding information about our new research project – our ‘Crossing the Line’ project has been added to our current research webpage, so you can find out more about what we’re doing and we’ll keep adding to it as the project progresses.
• Making our Meeting Centre newsletters available – we realised that our Meeting Centre newsletters only get circulated to our Meeting Centre mailing list, when really they should be available more widely. To rectify this, we’ve added a new page on the Meeting Centre blog where we can link to all the newsletters, so if you want to find out what’s been going on feel free to take a look. I’m not sure why we didn’t do this sooner when we already share our ADS newsletters on our ADS blog!
• Sharing Meeting Centre locations – although it’s a bit of a movable feast with new Meeting Centres opening all the time, we’ve added another new page on our Meeting Centre blog site to say where you can find Meeting Centres across the UK. If you run a Meeting Centre and you can’t see yourself on there (or we’ve got your details wrong), please email j.bray@worc.ac.uk and we’ll get it sorted.

So there you go, nothing earth shattering or amazing, but a few minor things that have been going on to hopefully make things a bit easier. These sorts of things tend to be happening behind the scenes all the time, and there are probably many other examples we could have shared. So let’s celebrate the small things every now and again, because they all add up!

Different country, similar challenges

This week we hear from Teresa Atkinson about a recent work trip to Madrid (we’re not jealous, honestly!)…

A trip to sunny Madrid in the heart of an English winter is always an attractive proposition, especially when it is to share learning and understanding around long-term care with other countries. The Association for Dementia Studies was privileged to be invited to the Fundacion Ramon Areces in Madrid to their conference discussing Long-Term Care: International Trends and Challenges in Spain. 

The conference was founded on the 2021 Report of the José María Martín Patino Chair, which identified the need for urgent cultural change in the long-term care model of care in Spain, putting people at the heart of its reformulation. Speakers from around the world took to the stage to share their ideas. The first session focused on international experiences of service provision to support future care planning and strategic development. David Grabowski, a Professor of Health Care Policy, from Harvard Medical School, kicked off the session talking about innovations in long-term care in the USA, followed by Adelina Comas, Assistant Professorial Research Fellow at the London School of Economics, who focused on the future of long-term care in the post-Covid era. The session wrapped up with a discussion on the challenges of autonomy and dependency care in Spain by Gregorio Rodríguez Cabrero, Professor of Sociology from the University of Alcalá de Henares.

Crossing the Line

One of our new projects that’s getting underway is ‘Crossing the Line’, which is looking at getting a better understanding of some of the challenges faced by family carers when providing personal care for people living with dementia. The 18-month project has been funded by the National Institute for Health and Care Research (NIHR) and brings together a host of co-applicants and project partners to ensure it reflects a range of different perspectives.

What is personal care?

Personal care can include a variety of different activities such as helping with going to the toilet, washing, bathing, dressing, mouth-care, shaving, haircare, foot and nail-care. Family carers that support people with dementia have reported that the issue of personal care is very important to them, though research has shown that little is known about it in the context of dementia and family care.

Family carers can face challenges adapting to the change in role that providing personal care brings, and this is worsened by lack of skills, know-how, shame and embarrassment. As a person’s dementia progresses, they may be increasingly unaware of their need for help or the impact it has on their family. This in turn can lead to high levels of distress, causing physical and emotional harm both to themselves and their family carer. The challenges around personal care are often a tipping point for the person living with dementia to move into a care home. 

DemECH launch at the House of Lords

We hand over to Teresa Atkinson for this week’s blog to find out about something rather exciting that happened last week…

Well, as they say, all good things come to an end…or do they?

Last week saw the launch of the findings from our recently completed project exploring the benefits and challenges of Extra Care Housing (ECH) for people living with dementia. What a great journey this has been, speaking to care staff, commissioners, managers and, most importantly, people living with dementia about their experiences of living in different models of ECH.

ECH is becoming an ever more attractive housing option as people age. However, there is still much that is misunderstood about what extra care housing can do to support people living with dementia. Our project found that people with dementia can live well in ECH but this is very much based on the individual being in the right place, at the right time and with the right level of support. Understanding the factors that impact on this is of paramount importance if we want to ensure people can live a good life in ECH.

Teaching Team Award

We’re very pleased and proud to announce that our Module Leads on the Postgraduate Certificate (PGCert) in Person-Centred Dementia Studies have received the Teaching Team Award from the University of Worcester. This award celebrates excellence and recognises outstanding practice in teaching and in supporting and leading learning. It also promotes innovative, inspiring and excellent practice which is outstanding in its impact to enhance and inspire student learning. The Association for Dementia Studies (ADS) as a whole is quite modest, so it was a big step for the PGCert team to put themselves forward for the award. I think we can safely say that they’re glad they did!

The application was driven by Teresa Atkinson, Module Lead for two of the PGCert modules (Enabling environments for people living with dementia, and Dementia in the family context). She found out what the team needed to do, and brought together information from Dr Chris Russell (PGCert Programme Lead and Module Lead for Engagement and empowerment in dementia studies), Nicola Jacobson-Wright (Module Lead for Person-Centred Leadership: The VIPS approach, and Expert practice in delivering person-centred dementia care), Mary Bruce (Module Lead for Supporting people with advanced dementia, and Applying the Admiral Nurse Competency Framework), and Jen Bray (technical support to help develop course content and upload it to the teaching platform Blackboard).

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.

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.

• Video 1
• Video 2

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.

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)