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.
  • 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!

Getting going

We do have quite a few things just starting up (and others in the pipeline that we can’t quite tell you about yet!), such as:

  • A new project is Crossing the Line, which is looking at the challenges faced by family carers relating to providing personal care for people living with dementia. Keep an eye out for more information about this project in the future as it gets going properly.
  • Another project is an evaluation of a new staff role that’s been created within a care-enabled assisted living scheme for older people, with the aim of improving engagement and reducing loneliness among their community. It’s in the early stages, but looks like an exciting project so far!
  • We’re also very pleased to be undertaking some work to develop a suite of apps based on the existing Dementia Friendly Environmental Assessment Tools. Again, this hasn’t been going for very long, but it’s already looking great – watch this space for updates!

Our new cohort of Postgraduate Certificate students has just started, and several other courses (both online and in person) have also got going in January with others starting soon. Looking slightly further ahead, we’ve got new cohorts of our Meeting Centres online training and Championing Physical Activity for People Affected by Dementia (online) starting in April, so have a look at the relevant information and get in touch if you are interested in either of those.

Nothing ever stands still at the Association for Dementia Studies, but we’ll try to keep you updated with our news in the future.

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

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)

Montage of three photos showing: the four presenters at the symposium stood in front of the slides, the building where the symposium took place, and bikes on a bridge over a canal in Amsterdam

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.

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

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.

The DemECH logo, which is a purple outline of a house with the word DemECH underneath, all within a circle

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.

Continue reading An update from the DemECH project

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.

Circular DemECH logo featuring a stylised image of a house
Continue reading “An update from DemECH”

A rose by any other (shorter) name…

We have a habit of using abbreviations and acronyms within our work to make it easier to refer to some of the various projects we work on, but we realise that it can sometimes be confusing for others who may not know what we’re talking about! This blog introduces you to some of our current shorthand terms, providing a bit of extra information to hopefully make things clear.

ADS – A nice easy one to start with. This is us, the Association for Dementia Studies, ably led by Professor Dawn Brooker MBE since we began back in 2009.

The ADS logo
Continue reading “A rose by any other (shorter) name…”

Supporting People Living with Dementia in Extra Care Housing

We have just started a really exciting new project! So what’s it all about? Let’s hear from the project team and find out.

The Project

We are interested in finding out more about how the different models of Extra Care Housing support people living with dementia.

Continue reading “Supporting People Living with Dementia in Extra Care Housing”