Last week in Worcester

A couple of blogs ago we told you about some of the Dementia Action Week activities that we were aware of. This week we thought we’d let you know how the Worcester-based events went.

On Tuesday 16th May we headed to the Guildhall on Worcester high street to join a host of other organisations with information stands as part of a Worcestershire Dementia Action Alliance event. Organised by Age UK Worcester and Malvern Hills, the event was opened by the Mayor of Worcester (at the time) Adrian Gregson and Councillor Lynn Denham.

Image showing two photos from inside the Guildhall. The first features the Mayor giving his opening address, while the second shows Councillor Lynn Denham welcoming everyone to the event

To give a flavour of the event, here’s a list of the organisations with stands (apologies if we’ve missed anyone out!):

Image showing three photos from the event. The first and last show people perusing the different stands down either side of the main room. The middle one shows the ADS stand with leaflets on the table and banners behind it advertising ADS and the two Worcester Life Story platforms that we evaluated recently

People who came along were treated to belly dancing and line dancing sessions organised by Age UK Herefordshire & Worcestershire, as well as being able to find out about the organisations offering dementia support in Worcestershire. It was also a good networking opportunity for those of us on the stands. We got to reconnect with some people, meet others in person for the first time, and find out about groups and organisations that we weren’t previously aware of. Thanks to Age UK Worcester & Malvern Hills for organising it.

On Wednesday 17th May we had another information stand, this time in the reception area at the University of Worcester St John’s campus. As well as getting the chance to raise our profile and share our knowledge with other members of staff, we were able to engage with several nursing students and provide them with some useful resources to take away and hopefully enhance their studies. One of our Senior Research Fellows Teresa Atkinson also delivered a dementia awareness session for staff who are in a caring role, and it was great to make some new connections and get some good conversations going. Thanks to those who came along.

Image showing two photos. The first is Teresa behind the ADS stand with leaflets on the table and the ADS banner behind it. The second is Teresa standing next to a whiteboard screen delivering her presentation during the awareness session

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

Bid writing and funding workshop

Last week we went to a workshop looking at ‘Bid writing for charities and community groups’ which had been organised by the Worcester City Council Historic Environment Record Officer as part of the Worcester Life Stories project that we’ve been evaluating. We went there with two hats on really, firstly to see what advice and tips we could pick up for ourselves as it’s always good to keep learning about how to improve our bid writing, and secondly to see how the information could be useful to other groups that we work with – Meeting Centres, we’re looking at you here!

The workshop was run by Get Grants, an organisation that provides practical support and advice to groups looking to write and submit bids and funding applications. As well as training sessions, they share funding updates via social media (@Get_Grants on Twitter), run online ‘meet the funder’ events and taster training sessions, and have a newsletter which gives ideas about potential funders.

It was a great interactive workshop combining whole group discussions and practical small group exercises, getting us thinking about some of the do’s and don’ts of bid writing, common mistakes to avoid, and ways to strengthen our bid writing skills to (hopefully!) increase the chance of bids being successful. We looked at how to find potential funders and the importance of doing your own research into the funders to make sure your application doesn’t fall at the first hurdle.

There was also the opportunity to review and assess some example funding applications, allowing us to put our new knowledge into practice by seeing it from a funder’s perspective. The exercise really helped to see how just a few small changes can make a big difference to how an application could be assessed.

It was also nice to meet up with people with a range of experiences from different disciplines beyond dementia, as it gave a fresh view and triggered new ideas for us to think about. We came away enthused with lots of new knowledge to feed into what we’re currently doing. We’ve got plenty of ideas to share with groups such as Meeting Centres, although we’d also suggest exploring the Get Grants website to have a look at what they offer, especially the free resources such as their funding finder, virtual events and ability to watch recordings from previous events.

Definitely a day well spent, so thanks to everyone involved.

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

May madness

It feels like I say this quite often, but as the Association for Dementia Studies is doing a lot at the moment, we thought it would be useful to take stock and draw breath in this week’s blog. Here’s an overview of what’s going on.

Education and training

Our PGCert students have recently submitted their final assignments so our lecturers are busy marking. Before we know it, we’ll be welcoming a new cohort of students on our September modules! If you would like to be one of them, please have a look at our website or watch our new short video. A reminder to current and former students – you are eligible for the Hennell Award so why not apply!?

The next cohort of the 5-week Meeting Centre online training starts later this month, and this time is being facilitated by Kirrie Connections. If this is too short notice, don’t worry, we’ll be running another cohort in July. Have a look at our website for full details and how to register for either course. We’re also working on developing Meeting Centre training for other audiences, so keep an eye open for further updates.

Conferences and events

In Dementia Action Week we’ve got information stands at the Leominster Dementia Conference and The Worcester Dementia Action Alliance Awareness Event (both on 16th May), as well as running a dementia awareness and information session for staff here at the University of Worcester on 17th May supported by having a stand in the St John’s campus reception area.

We’ll also be at the Alzheimer’s Society Annual Conference in London on 18th May, presenting at the Cornwall Dementia Conference down in Newquay on 19th May and presenting at the 23rd International Conference on Integrated Care in Belgium later in the month. Busy times!

We’re also planning our Get Real event to launch and share the findings. Although it’s not until 12th July, our plans are well underway, and if you would like to attend you can register here. As part of the event we’ll also be displaying our Meeting Centres family blanket so don’t forget to send in your squares!

If that wasn’t enough, we’ll be writing abstracts to submit to various conferences such as UK Dementia Congress later in the year to share findings from a whole host of our research projects.

Research and consultancy

We’ve got several research projects underway at various stages, so we’ll be working on these as well as writing articles for recently completed projects. Bid writing is also taking place with several bids taking shape quite nicely (fingers crossed!).

A work in progress is the development of an app version of the environmental assessment tools. The app is not quite at the point of being made available, but it’s not far away – watch this space.

We’re also working on a series of short videos relating to Meeting Centre data collection, both to help Meeting Centre staff understand what’s involved but also to help explain it to members and carers and encourage them to get involved. It’s another ‘coming soon’ situation, but hopefully the videos will be helpful to everyone.

Phew! Same again next month?

Thoughts on new Alzheimer’s drug

Reports that new Alzheimer’s drug slows disease by a third. Early reflections and contemplations from Dr Chris Russell.

In the last few days an announcement has been made about the potential to treat Alzheimer’s disease, which hails possible (very) positive consequences. This is about donanemab, the name given to a pharmacological response (i.e. medication) to that illness. Those responsible for its development report treatment using donanemab can slow the rate at which symptoms might be expected to progress by up to a third. Unsurprisingly this has generated excitement, underpinned by the fact that donanemab works by tackling the apparent underlying causes of Alzheimer’s disease (aiming at the removal of amyloid, the plaques that damage the brain), and because this is the second drug targeting amyloid where such progress has been announced (the other being lecanemab).  

This is good news. Many of the people I know who are personally affected by dementia have reflected to me at one time or another that finding a cure for their dementia is a prized priority. This medication is not a cure as such, but it looks like things are moving in the right direction. There is momentum building. It appears we have reached a seminal moment in the history of dementia and responses to it. Now is an opportunity to look ahead and consider what might come next and what this could mean.

Firstly, trials of donanemab and lecanemab continue. The recent reports indicated side effects associated with donanemab (some of them serious). Mode of delivery of the medication is via regular infusion rather than any oral method. So, more needs to be known about the pharmacology of these interventions and their application.

More significant though is the fact that both donanemab and lecanemab focus upon Alzheimer’s disease. Nothing about them targets the underlying causes of other dementias. So, this medication will not offer the same hope to people living with vascular dementia or dementia with Lewy bodies, for example. This matters for many reasons, not least because people living with other forms of dementia must not be forgotten or have their future circumstances neglected.

In conversation with my colleague Emeritus Professor Dawn Brooker yesterday, Dawn reflected that there was a decline in care research funding and a general decrease in interest after Aricept (donepezil) was released in the late 1990s. It could be that we see a similar downturn after these new drugs get licenced. Many people live with dementia and will continue to do so. Emphasis upon understanding what works well in enabling people to live lives of quality must not be discounted at this moment.  

For people living with Alzheimer’s disease, early diagnosis will be more important than ever. Successful outcomes with donanemab are possible when damage to the brain is not advanced. Treatment will have to begin at a very early stage. At present diagnosis rates are poor. These must improve. Services will have to be better supported to achieve this. Stigma can hold people back from seeking diagnosis too. Means will have to be taken to address this.      

As more people are diagnosed earlier with dementia, they are likely to be younger and physically fitter than in recent times. An outcome may be that advocacy and campaigning by people living with dementia will be boosted. This has happened in the past, as people in better health are diagnosed. A consequence has been increasing challenge by advocates with lived experience of dementia to the status quo and what is acceptable, in terms of acknowledgement of individual rights and how support and care is offered. This is positive. If more of this transpires as a result of advances in pharmacology it will be wonderful. 

At the Association for Dementia Studies, we are already considering what the impact will be once these drugs become widely available. For example, thinking about how pharmacological developments will work hand in hand with good psychosocial support to adjust to the changes that diagnosis brings. Several areas of our work spring to mind, not least the Meeting Centres programme – which has adjustment to change at its heart. Enabling environments is another context where we can contribute to building knowledge and best practice. Leisure too, as greater numbers of people are diagnosed at an earlier stage they are, quite rightly, going to want to continue to pursue and develop hobbies and interests. Additionally, the courses we offer, including the Postgraduate Certificate in Person-Centred Dementia Studies, will similarly incorporate new developments, and strengthen the synergy between advances in pharmacological practice alongside psychosocial support in learning and teaching. Work on stigma and how we support professionals to talk with people about dementia will be crucial, for example. Everyone we teach needs to be happy talking to people about their dementia and its implications.

So, at this most important of moments, there is much to look forward to and much to do to ensure the best outcomes are achieved for all.      

Dementia Action Week – what’s coming up?

It’s nearly Dementia Action Week (15th-21st May) so we thought we’d share a few events that we’re aware of. Please note that we are not endorsing any of these, just helping to share the information.

We’ll be doing our bit here at the University of Worcester by running a dementia awareness and information session for staff on 17th May and also having a stand in the St John’s campus reception area to share our knowledge with staff and students throughout the day.

We’ll also have a stand at an event organised by Age UK Worcester and Malvern Hills which is taking place 16th May 10am-4pm at the Guildhall in Worcester. We don’t have a flyer to share, but for further details contact or 07974 414056.

In Leominster there are various activities taking place all week organised by Dementia Matters Here, including an art exhibition, conference and picnic. More details are shown in the image below, together with contact information if you want to find out more. We’ll be at the conference on 16th May with a stand, and are looking forward to hearing the presentations taking place.

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A new project is up and running!

Last week Senior Research Fellow Teresa Atkinson and Research Assistant Jen Bray got to go on a road trip to East Sussex to carry out the first stage of data collection on a new research project. They headed down to a new Abbeyfield housing scheme which is a care-enabled scheme – different to our previous experiences of extra care housing – that fits with Abbeyfield’s goals for combatting loneliness and social isolation. The scheme has developed a Community Link Worker role with the aim of enabling tenants who may be at risk of social isolation to enjoy an enriched lifestyle, reduce the impact of loneliness, and improve wellbeing.

Artist's impression of the new scheme, showing a large 3-storey building surrounded by trees, shrubs and blue skies
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Focusing on the little things

Sometimes it’s easy to get caught up with trying to make big changes or getting things happening at scale, but that means the little things can get overlooked. In this blog we’re going to celebrate a few small tweaks and changes that have happened recently, which have probably gone unnoticed so far!

  • Updating our publications page – on our website we have a page where we share lists of our publications and knowledge exchange activities (if you didn’t know about that page, you do now!). We try to keep the lists updated, but when things are busy it doesn’t always happen as often as we’d like. We’re pleased to say that it’s all back on track now, and every time we update the lists it’s always a nice reminder of what we’ve been doing.
  • Expanding our publications page – as well as updating our publications, we’ve added in a new section on that page to focus on resources. A lot of our research projects result in new (and more often than not, free!) resources. While we share these in relevant places on our website, we thought it would be useful to bring them together in one place, so we did!
  • Sharing our new Meeting Centre videos – we’re very pleased with the two short videos created as part of the Worcestershire Meeting Centres Community Support Programme and have made sure that as well as sharing them on social media, they are also available on our website. In addition to providing links to them in our new resources section (see above), they are available on our Meeting Centres page.
  • Sharing the DemECH booklets – following the recent launch at the House of Lords, links to download the three booklets from our DemECH research have been included in the relevant section on our current research webpage, and before you ask, yes they are also in our new resources section!
  • Adding information about our new research project – ourCrossing the Line’ project has been added to our current research webpage, so you can find out more about what we’re doing and we’ll keep adding to it as the project progresses.
  • Making our Meeting Centre newsletters available – we realised that our Meeting Centre newsletters only get circulated to our Meeting Centre mailing list, when really they should be available more widely. To rectify this, we’ve added a new page on the Meeting Centre blog where we can link to all the newsletters, so if you want to find out what’s been going on feel free to take a look. I’m not sure why we didn’t do this sooner when we already share our ADS newsletters on our ADS blog!
  • Sharing Meeting Centre locations – although it’s a bit of a movable feast with new Meeting Centres opening all the time, we’ve added another new page on our Meeting Centre blog site to say where you can find Meeting Centres across the UK. If you run a Meeting Centre and you can’t see yourself on there (or we’ve got your details wrong), please email and we’ll get it sorted.

So there you go, nothing earth shattering or amazing, but a few minor things that have been going on to hopefully make things a bit easier. These sorts of things tend to be happening behind the scenes all the time, and there are probably many other examples we could have shared. So let’s celebrate the small things every now and again, because they all add up!

Meeting Centres family blanket

Sometimes we have slightly crazy ideas, and this week it’s time to tell you a bit more about our latest one!

When we see photos from Meeting Centres being shared on social media, we often see lots of arts and crafts and creativity taking place, and one recent comment from a member about what they would like to do was “we could make a blanket”. Suffice to say, these sorts of things get us thinking, and we’ve come up with a plan to create a Meeting Centres UK family blanket.

We’re inviting Meeting Centres from across the UK to work with their members and carers to create squares that represent their Meeting Centre and what it means to them, send them to us, and we’ll bring them all together to create a blanket.

As luck would have it, we’re hosting an event to share the findings from our ‘Get Real with Meeting Centres’ research in mid-July, which will be the perfect opportunity to display the blanket and celebrate how far Meeting Centres have come.

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Championing physical activity – reflections

This week we hand over to Dr Chris Russell to hear his reflections on working alongside practitioners offering physical activity to people affected by dementia. It’s particularly fitting as today just happens to be World Day for Physical Activity…

In mid-March the third run of the online course we’ve been offering to practitioners from a wide range of backgrounds, aiming to enhance their confidence and ability to offer physical activity to people affected by dementia, came to its conclusion. It is such a privilege to be working alongside colleagues who are so motivated and keen to do a good job. It is positive because we know physical activity can and should be part of everyday life for people living with dementia. Sadly it is often not, and this was a core motivation to develop and offer the course. We believe it can help close that gap.

Physical activity doesn’t have to be something which is highly organised, or in any way involve individuals wearing lycra! (Although, of course, if that’s what people want that’s absolutely fine). Physical activity is broadly defined as any movement that gets people’s heart rate moving in the right direction. So it can apply to a wide range of activities and pastimes, and for us that means we can link it to leisure and the sorts of interests people have, or things they may want to try. Following on from that, the course is designed to encourage participants to think about the people they work alongside and use what people bring as their motivation for taking part to offer them something really enjoyable, as well as being useful.

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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.

Continue reading “Different country, similar challenges”