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 resources impact evaluation survey

Resources on supporting people living with dementia in Extra Care Housing

In February we launched the additional resources from the DemECH project (Supporting people living with dementia in Extra Care Housing). We would now like to know what you think of these resources and how you have used or intend to use them. As a reminder, the resources can be found here.

We would like to invite you to take part in a study that involves completing a survey to evaluate the impact, use and usefulness of the DemECH resources:

• Three “Key Insights” booklets, each with a different target audience: adult social care commissioners and professionals, organisations providing Extra Care Housing for people living with dementia, people and families affected by dementia.
• An infographic summarising the key findings of the DemECH project.
• Three videos to support and supplement the three booklets, raise awareness and increase understanding of Extra Care Housing for people living with dementia.

The survey

The survey will explore what you think of the infographic and the booklet and video that applies to you, how you have used or intend to use them and how useful you have found them. The survey questionnaire is anonymous and should take around 10 minutes to complete. You only need to complete the sections that are relevant to you.

You can withdraw from the study by closing the browser page down without submitting your responses and your data will not be saved. Please note that once you have submitted your survey responses you will be unable to withdraw your data as participation is anonymous.

For more information about the survey and the treatment of the data and to access the survey, please click the following link – DemECH resources impact evaluation survey

If you have any questions or would like further information, please contact Dr Julie Barrett: j.barrett@worc.ac.uk

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.

Get Real – impact survey

Last year we completed our ‘Get Real with Meeting Centres’ project, which was investigating the challenges that face community-based group support for people living with dementia – such as Meeting Centres – in keeping going long term.

This project has certainly informed us in our thinking about the role of such community initiatives in the dementia pathway, and in particular about how Meeting Centres in the UK can function going forward. But we also want to know what everyone else thought – i.e. those we work with and alongside.

It’s now more than 6 months since we held our big celebration event to mark the end of the Get Real project and share our results. At that event we unveiled three booklets aimed at three different audiences, as well as a series of videos on different topics, regarding what we had learnt in the project:

Booklets

• What you can do to help your Meeting Centre: Suggestions for people who attend Meeting Centres
• Keeping Meeting Centres going long term: Recommendations for people running Meeting Centres
• Sustaining Meeting Centres and similar community-led dementia support: Suggestions for health and care professionals

Videos

• Referrals and the dementia care pathway
• Reaching people and membership
• Carer benefit and engagement
• Venue and location
• External relationships and collaboration
• Internal relationships and working practices
• Finances and funding

Time for feedback

Now that a little time has passed, we want to ask people who have read and seen these for a little feedback on them – what they thought of them, how they used them, if they passed them on to anyone (and if so, who?), and what was most useful or less useful about them. This will help us to gauge any impact from the study and also inform how we do things in future projects.

If you came along to our ‘Get Real Celebration Event’ on July 12 last year – or if you have simply encountered these resources since – please take the time to let us know what you think by completing this short survey. We much appreciate it!

For more information on the Get Real with Meeting Centres project, please visit the dedicated blog site.

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

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!!

Ever increasing numbers

When it comes to some of our videos and resources we don’t like to get too caught up on numbers as they don’t actually reflect what happens after someone has watched a video or downloaded a resource, but every now and then it’s nice to appreciate that the numbers mean our efforts aren’t going to waste. Here are a few things to tell you about:

• Our main video about our fully online Postgraduate Certificate has been viewed 120 times.
• We’ve got two Meeting Centre videos, one aimed at potential members and carers which has been viewed over 340 times, and one aimed at referrers which has been viewed over 170 times.
• Although only launched in mid-July, our suite of videos sharing the Get Real findings have been viewed nearly 180 times overall, and hopefully we’ll soon be getting those numbers for each individual video…
• The CHARM Framework Manual has been downloaded nearly 1,150 times!
• The two creative arts and sensory activity booklets produced by the TAnDem PhD students have been downloaded over 920 times, and that’s not counting downloads from our main website (which unfortunately we don’t know!).
• At the height of the Covid pandemic we created a series of resources focusing on different settings or situations. They’ve been downloaded nearly 3,950 times overall which is amazing, and we hope that they were useful during challenging times.

Get Real with Meeting Centres launch event

Last week around 80 people got together at The Arena in Worcester to hear from the Association for Dementia Studies (ADS) about the findings from the Get Real with Meeting Centres research project and to launch the booklets and videos developed to help share those findings.

Following a welcome by ADS Director Dr Shirley Evans, the event got underway with a bit of background to the project provided by Emeritus Professor Dawn Brooker MBE. She talked about the history of Meeting Centres in the UK and where the Get Real project came from, and as always the question of ‘how many Meeting Centres are there?’ came up (answers on a postcard please as every time we think we know, we find that our list is out of date!!). For those who may not be aware, Get Real was looking at the different factors that may affect the sustainability of Meeting Centres and what can be done to help mitigate them and keep Meeting Centres running in the long term.

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.