What happened next?

Research can be odd sometimes because you do all the work, create resources to share the findings, share them widely, and hope that they make a difference. We’re trying to change that with some of our recent projects, by finding out what people have actually done with those resources in practice. Have they actually been used? Are they helping people? Are they sat on a shelf somewhere gathering dust?

We’re not expecting to hear that something is the best thing since sliced bread, but even knowing that you shared a booklet with someone and it helped them understand something would be really useful for us. We can see that booklets are being downloaded and videos are being watched, but not what people are doing afterwards.

Basically, once our resources have been released into the wild, what happened next?

There are three sets of resources that we’re currently trying to get some feedback on, all aimed at different settings, so please take a look at the following and see if you’ve used any of them. If you have, a quick bit of feedback via the relevant link would be appreciated!!

Get Real with Meeting Centres

The Get Real project investigated the challenges that face community-based group support for people living with dementia – such as Meeting Centres – in keeping going long term. There are three booklets for different audiences and a series of short video clips available to share the findings. If you’ve used any of them, please let us know by completing this short survey.

For more information on the Get Real with Meeting Centres project or to access any of the resources, please visit the dedicated blog site.

DemECH

The DemECH project looked at various aspects of supporting people living with dementia in Extra Care Housing. As well as the original three booklets, additional videos and an infographic were developed to create a suite of resources for different audiences. Have you used them? If yes, please click the following link to complete the DemECH resources impact evaluation survey.

As a reminder, all of the DemECH resources can be found here.

CHARM

The Care Home Action Researcher-in-Residence Model (CHARM) project aimed to support collaborative research between care homes and researchers, supporting staff, visitors and residents in care homes to design and implement their own unique and meaningful research. The CHARM Framework manual was developed to help guide care homes through the research process. If you’ve used the manual and would be willing to provide some feedback on it, please complete this short survey.

You can download a copy of the CHARM Framework manual from here.

We know that these different resources won’t apply to everyone, but if you’ve used any of them we’d really appreciate you taking a few minutes to let us know if they’re making a difference or not. Thank you!

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. 

DemECH – new resources available!

Extra Care Housing (ECH) is an increasingly popular form of housing for older people, often as a preferred alternative to a care home. Many people appreciate the independence that having their own apartment within an ECH scheme can offer, while also being able to access help and support, enjoying opportunities for social interaction and feeling safe.

The DemECH project explored how ECH can help people to live well with dementia and investigated some of the associated advantages and disadvantages. The project used a mixed methods designthat combined in-depth qualitative data collected from nine case study sites, with quantitative data on ECH provision for people living with dementia.

Findings from the project have been shared through various routes such as presentations at the Housing LIN Virtual Summit 2023 and UK Dementia Congress in both 2022 and 2023. The findings were also formally launched at the House of Lords in March 2023, as reported in one of our previous blogs.

DemECH resources

We’re pleased to announce that the findings are now available as resources in three difference formats: key insights booklets, an infographic and a series of short videos. Links to each of the resources are provided below, and can also be found on a new webpage for ease of reference.

Key insights booklets

The original resource developed during the project, there are three booklets to share the key insights from this research project. They are aimed at different audiences:

• A booklet for people and families affected by dementia;
• A booklet for organisations providing Extra Care Housing for people living with dementia;
• A booklet for adult social care commissioners and professionals.

The booklets describe the benefits and challenges of living in ECH for people with dementia and what helps a person with dementia to live well in ECH. The booklets for adult social care commissioners and professionals and for organisation providing ECH also describe the pros and cons of different models of ECH for people living with dementia.

Infographic

Using the booklets as a starting point, an infographic was developed with artwork by ForMed Films to present a concise and easy-to-understand summary of the DemECH key insights. A sneaky preview is provided below, but you can also find it here.

Videos

To support and complement the three Key insights booklets, a series of three short videos have been produced by Macreavy Media. These again focus on the three different audiences and explore how people with dementia can live well in ECH. The videos feature ECH residents, family members, care staff, housing managers and housing providers to deliver the key research findings in their own words.

• A video for people and families affected by dementia
• A video for organisations providing Extra Care Housing for people living with dementia
• A video for adult social care commissioners and professionals

All of the resources from the DemECH project can be found here, so please feel free to take a look and share with others.

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. 

Lights, camera, action!

Our new Association for Dementia Studies (ADS) office was recently turned into a film studio (kind of) as part of an extra phase of work that some of the team have been involved with following our DemECH research project looking at ‘Supporting People Living with Dementia in Extra Care Housing’. The DemECH project finished earlier this year and back in March the project findings were officially launched at the House of Lords. Our three ‘Key Insights’ booklets were aimed at presenting the findings for different audiences, summarising the benefits and challenges of living with dementia in extra care housing:

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

However, as our blog about the launch hinted, this wasn’t necessarily the end of our DemECH involvement.

We wanted to be able to create additional resources to build on the existing resources and enable a wider range of people to engage with project findings in different, accessible ways, and thanks to additional funding we were able to do this. The decision was made to focus on two different media for the new resources.

Three short videos

We are creating three short videos to support and supplement our Key Insight booklets and are lucky enough to be working with Sean Macreavy Media who have previously been involved in videos for other projects such as:

• Meeting Centres – a film for Members and carers and a film for Referrers
• Get Real – a series of short films
• Namaste – A short film about Namaste Care as well as the full version Seeing is Believing

Filming with different DemECH project members and stakeholders has already been carried out at other locations to capture a range of perspectives, but now it was our turn. Teresa Atkinson, part of the original DemECH project team, was prepped and ready for her moment in the spotlight. She was joined by former ADS colleague and DemECH researcher Becky Oatley, who has remained involved in developing the resources. Both appeared to be well-prepared, knowing what topics they would be talking about thanks to careful planning of the videos by Dr Julie Barrett who is managing this extra phase of work.

After a bit of set dressing with appropriate placement of leaflets and plants, it really was time for lights, camera, action. The filming went smoothly and it looks like Sean and Rob from Fix8Films got all the footage they needed. So now it’s over to them to edit all their filming into three short videos – good luck!

“Sean and his team making filming fun and easy. They have a unique way of putting you at ease enabling you to get your message across without feeling anxious”

Teresa Atkinson

Infographic

The other additional resource we’re working on is an infographic which aims to capture and summarise the key findings from the project. This is being done with the expertise of ForMed Films CIC, and after a few discussions to try out different ideas and refine the design it’s nearly there. If you were at UK Dementia Congress recently and saw Teresa present on the DemECH project, you may have spotted a few sneaky peeks of some of the images used within the infographic, but that’s as much as we’re sharing until it’s all finalised!

A group effort

Both the videos and infographic have been planned following discussions with a project advisory group involving a range of project stakeholders, who will also be part of the process to review and refine the final outputs. It’s not just ADS that decides on these things, everyone in the advisory group has a say.

Once the new resources are finished and have been shared (keep an eye out for future blogs and social media posts), we will be following up on how people are using them and what impact they are having in practice. As fun as it’s been going through the filming and design processes, it’s all about trying to get people actually taking on board the DemECH findings and making use of them to ensure people living with dementia get the very best out of what Extra Care Housing has to offer. Hopefully by having a suite of resources in different formats, we can reach different people in different ways.

We can’t wait to see how the videos turn out, and look forward to sharing them and the infographic with you in due course.

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

Summer break? Maybe not!

The period June to September is always a bit of an odd time for us. The University feels quiet as there are no students around, but actually for us it’s still quite busy. Unfortunately, it’s also a time when half of the team realise that we haven’t taken enough annual leave and need to use it before the end of August! It means that when we are around it can be even busier! So what have we got going on over the summer months?

Although our January cohort of students has finished, we’re still quite active in terms of our Postgraduate Certificate in Person-Centred Dementia Studies. We’re recruiting for our September modules and there’s an opportunity to talk to the Programme Lead and find out more as part of a virtual open event on 6th July. See our website to book a place. Our module content is also being reviewed, checked, tweaked and updated ahead of the next semester to make sure we’re ready to hit the ground running. We’re also supporting our Postgraduate Award students who are halfway through their double module, even though there is no formal teaching taking place.

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.

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!

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)

An update from the DemECH project

The DemECH project, funded by the National Institute for Health and Care Research School for Social Care Research, is exploring how Extra Care Housing can support people to live well with dementia. Over a fifth of those living in Extra Care Housing have dementia, a number that is likely to increase as the prevalence of dementia continues to increase and people are being diagnosed at a younger age.

Previous studies have highlighted some key features of Extra Care Housing that can help people with dementia including dementia friendly design, having flexible care available, good use of technology, and lots of opportunities for social activities. However, everyone has a different experience of dementia and little is known about what model of extra care housing works for whom.

An update from DemECH

Four months into the DemECH project and our team have been busy navigating their way through various project milestones. This week’s blog follows the team through the first period of their NIHR-funded project…

What is DemECH?

DemECH is a project looking at the experiences of living with dementia in Extra Care Housing (ECH). ECH is a model of housing with care for older people that promotes independent living with the option to take up flexible support as required. Living in ECH involves living in your own self-contained flat or apartment within a larger complex that usually contains a range of shared facilities, such as a shop, café, garden and hairdresser. Care can be provided onsite and can respond flexibly to changing levels of care and support needs.