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)
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.
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:
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.
A presentation from Dr Becky Oatley on the DemECH project, looking at “What is the ‘extra’ in extra care housing?”
A whole range of posters about various projects and resources.
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.
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.
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.
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”.
Everyone at the Association for Dementia Studies (ADS) is driven by the priority to do all we can to enable people with dementia and their close family and friends to enjoy lives of quality. Nowhere is this more apparent than in the Hennell Award.
The Hennell Award for Innovation and Excellence in Dementia Care (to give it its full title!) was launched in memory of the late Brian Hennell at the ADS 5th birthday celebration event on 14 May 2014. Brian’s wife June has acted as an ambassador for this award which recognises people who have made a significant contribution to promoting person-centred care.
Anyone who has studied on one of our many courses can enter the award. This year we were able to shortlist three amazing and innovative applications – all very different, but each one focused on enhancing the lives of individuals whom the entrants supported. You can read about the entries on our webpages.
Stu Wright, who won this year’s Hennell Award, impressed the judging panel with his “real-life plans and actions for improvement within care homes”, and his focus upon human rights and the needs and aspirations of people living with advanced dementia. We’re very pleased that Stu will be joining us at the upcoming UK Dementia Congress to talk about his work as part of a symposium about our education, so if you’re at Congress please do come along to hear more and congratulate Stu on his achievement.
It is such a great pleasure to be involved with the Hennell Award, knowing that the education we provide can help make a considerable difference to people’s lives. It is fantastic to be able to recognise our students for the contribution they make.
Details will be posted in December about arrangements for the Hennell Award 2022/23. We are looking forward to receiving more great applications and recognising the impressive things going on to promote person-centred care and support across the world!
On Monday 24th October, Dementia Matters Here(fordshire) hosted a Dementia Festival at Saxon Hall, Hereford, as part of their Herefordshire Dementia Voices project. The aim was to raise awareness of dementia, help the public get a better idea of what support is available across Herefordshire, and also connect different professionals and organisations. At the Association for Dementia Studies (ADS) we’re evaluating the Herefordshire Dementia Voices project (more on that later), so were happy to have a stand at the event alongside a whole host of other organisations – apologies to anyone I’ve missed!
I headed down to Winchester with a car full of banners, booklets and leaflets on September 29th, ready to set up at the National Dementia Care Awards. The awards, established in 2009 by The Journal of Dementia Care, seek to acknowledge care providers and individuals who have made a significant difference to the quality of life of people living with dementia. ADS Director Dr Shirley Evans was one of the judges this year. My role, however, was to man a stall to talk about the work of ADS, and specifically Meeting Centres, as there is growing interest in the Dutch model of dementia support in the region.
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.
We regularly have to provide updates to the wider university to say what’s going on with our research within the Association for Dementia Studies, and it’s actually quite a nice exercise to do as it helps us realise just how much we’re doing on a daily basis. It’s a chance to pause and reflect, and as that feels quite appropriate at the moment we thought we’d share our latest research update with you. So, just what have we been up to between May and August?
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.
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.