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.

The second half of the conference focused on residential care which, in Spain, has been characterised by institutionalised models which are distanced from normal, daily life. Speakers were invited to talk about the ways in which other countries put people at the heart of care, to support Spain’s process of deinstitutionalisation and transformation to more home-like and normalised models.

Teresa Martínez, a Psychologist and Gerontologist from the Principality of Asturias, Spain, opened the session by discussing trends moving towards person-centred care. I was second up on the agenda talking about our projects at the Association for Dementia Studies focusing on Meeting Centres, developing enabling environments, and models of Extra Care Housing. Finally, Eloy van Hal, founder of Hogeweyk in the Netherlands wrapped up the session discussing the principles of the dementia village. It was great to hear about Hogeweyk again having visited it a few years ago.

Teresa Atkinson (fourth from the left) with the other presenters

The conference was important in giving the audience, some 300 participants, the opportunity to have a discussion around how the changes in Spain can be envisaged and operationalised. There was plenty of debate following each speaker session, with similar questions and challenges to that posed in any country: How do we ensure our services are fit for purpose and well resourced? How do we ensure we have the right staff with the right expertise? How do we provide for long-term care across multiple complex conditions, including people with intellectual disabilities? 

Different country, similar challenges. The UK’s own Archbishops Commissioned Report, Reimagining Care was launched earlier this year. It sets out a challenge to us all: ‘We must rethink the way care is viewed – care and support is not about meeting people’s basic needs, but the spiritual, emotional and practical support we all need to live a full life’

You can find audio recordings of the two sessions (in English and in Spanish), together with photos from the conference, on this website in the audio section. Teresa features in the second recording from around 18 minutes in.

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

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. 

What will the project do?

The research team will carry out a survey and personal interviews with a diverse range of family carers from across the UK. This will make it possible to develop a deep understanding of the experiences of family carers relating to their provision of personal care to people living with dementia. That understanding will enable the research team to develop resources that will help families to cope with the challenges that they face.

You can keep up to date with the project via the relevant section on our website, which also has contact details for some of the key project team members.

We’ll also be posting updates via our social media channels, so connect with us on twitter @DementiaStudies and on Facebook @adsuow

This study is funded by the NIHR Research for Patient Benefit Programme/NIHR202970. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

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.

The findings were shared at the House of Lords with guests representing the funders, Alzheimer’s Society, Dementia Carers Count, Platform Housing, local authority commissioners, local government, Housing Learning & Improvement Network, Order of St John’s Care Trust, Methodist Homes Association, Housing 21, and people living with dementia who were part of the project advisory board.

The event was hosted by Lord Best, Chair of the All Party Parliamentary Group Inquiry on Housing & Dementia. All guests enjoyed afternoon tea whilst hearing about the outcomes of the research. This was followed by chance to mingle and chat, with plenty of sandwiches and cake consumed along the way.

The high point of the afternoon was the launch by Jeremy Porteus (HousingLIN) of the project outputs, three Key Insight Booklets. These have been designed to help all stakeholders understand the benefits and challenges of ECH for people with dementia with one for adult social care providers, one for housing providers and one for people living with dementia and their families. All booklets can be found on our website or via the links below, and are free to download.

• A booklet for people and families affected by dementia
• A booklet for housing providers
• A booklet for adult social care providers

So, the end of the project but not the end of the journey! On the very same day as the launch, we heard that we had been successful in securing further funding to create exciting, accessible ways to share the findings.

So, not all good things do come to an end…keep your eyes peeled for further information.

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).

To support the application, the information was developed into two case studies exploring different aspects of the PGCert.

The first case study focused on the collaborative approach used to develop the course. It explored how the PGCert arose out of an identified need for both academic and practice-based learning among dementia care professionals, and how an online course needed to be flexible, achievable, engaging and innovative. With this in mind, our modules were developed to include a variety of learning opportunities and formats including video lectures, experiential learning and interactive opportunities. It was also important for us that our teaching was informed by research, and all of our modules incorporate ADS research within them. This means that our students are often being taught by the very people who carried out the research in question.

The second case study demonstrated the excellence in teaching practice and its impact on student learning. While our exercises, activities and assignments are aligned with learning outcomes and with practical application in mind, it is important for us to ensure that we continually seek to improve our modules. Student feedback is regularly sought, with suggested improvements being taken on board and incorporated into future iterations of our modules where possible and appropriate. We also provide opportunities within our modules for students to hear from people affected by dementia to enable them to hear a range of different perspectives while studying with us. This case study also explored some of the impacts of our teaching on the PGCert, which included:

• promoting a learning community to ensure online students have opportunities to interact and engage with each other
• students putting their learning into practice and seeing what they had achieved since studying on the modules
• linking with employers to ensure that our modules deliver learning that will actually make a difference in practice
• looking beyond the curriculum to see how practice and behaviour has changed outside of the academic world

Writing the case studies was a great exercise for the PGCert team as it enabled us to take a step back from ‘doing’ and reflect on our successes and how far we’ve come in the past few years. The Teaching Team Award was also validation for all the hard work and effort that everyone has put into developing the seven modules that make up the PGCert.

We’ve hopefully got an article about this work coming out soon so we can’t really say too much here in case we steal its thunder, but we’ll let you know when it’s available. We’re also attending a ceremony at the University of Worcester next week to formally acknowledge the award, so keep an eye out for any photos.

If you’re interested in studying with us our next modules begin in September, so you’ve got plenty of time to get your application in!! Please see our website for more details of our modules and how to apply.

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

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!

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)

UK Dementia Congress 2022

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 8^th-9^th 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:

• The opening address by Interim Director Dr Shirley Evans, followed by two of our PhD students Nathan Stephens and Rosemary Davies talking about their work so far.

It’s all about the research!

The penultimate Meeting Centre webinar took place on 28^th 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.

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.