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 16^th May), as well as running a dementia awareness and information session for staff here at the University of Worcester on 17^th 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 18^th May, presenting at the Cornwall Dementia Conference down in Newquay on 19^th 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 12^th 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!

Link to Meeting Centre Blanket flyer

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.      

The Hennell Award 2022

Everyone at the Association for Dementia Studies (ADS) is driven by the priority to do all we can to enable people with dementia and their close family and friends to enjoy lives of quality. Nowhere is this more apparent than in the Hennell Award.   

The Hennell Award for Innovation and Excellence in Dementia Care (to give it its full title!) was launched in memory of the late Brian Hennell at the ADS 5th birthday celebration event on 14 May 2014. Brian’s wife June has acted as an ambassador for this award which recognises people who have made a significant contribution to promoting person-centred care.

Anyone who has studied on one of our many courses can enter the award. This year we were able to shortlist three amazing and innovative applications – all very different, but each one focused on enhancing the lives of individuals whom the entrants supported. You can read about the entries on our webpages.

Stu Wright, who won this year’s Hennell Award, impressed the judging panel with his “real-life plans and actions for improvement within care homes”, and his focus upon human rights and the needs and aspirations of people living with advanced dementia. We’re very pleased that Stu will be joining us at the upcoming UK Dementia Congress to talk about his work as part of a symposium about our education, so if you’re at Congress please do come along to hear more and congratulate Stu on his achievement.

It is such a great pleasure to be involved with the Hennell Award, knowing that the education we provide can help make a considerable difference to people’s lives. It is fantastic to be able to recognise our students for the contribution they make.   

Details will be posted in December about arrangements for the Hennell Award 2022/23. We are looking forward to receiving more great applications and recognising the impressive things going on to promote person-centred care and support across the world!    

Research update

We regularly have to provide updates to the wider university to say what’s going on with our research within the Association for Dementia Studies, and it’s actually quite a nice exercise to do as it helps us realise just how much we’re doing on a daily basis. It’s a chance to pause and reflect, and as that feels quite appropriate at the moment we thought we’d share our latest research update with you. So, just what have we been up to between May and August?

Congratulations Team Sunflower

This week we hand over to Dr Becky Oatley for an update on her recent walking challenge as part of Team Sunflower…

A little over one month ago, Team Sunflower took on an Ultra Challenge walking 100km along the Jurassic Coast.

Team Sunflower comprised me, a research associate here at the Association for Dementia Studies (ADS), Jane, who has lived experience of dementia and contributes to both ADS research and teaching, and Jemma, one of the first cohort of students on our Postgraduate Certificate course.

The challenge started as a dream of Jane’s and finished as 100km of sunshine, rain, thunder, steep cliffs, daunting climbs, sharp descents, teamwork, laughter, and memories.

Now and next

Every few months we take stock of what’s been going on and have a look at what we’ve got coming up, and now feels like a good time to just that!

Conferences

We’re in that weird period of some conferences being online, some returning to in-person events, and some using a hybrid approach. In May we went to the Alzheimer’s Society Conference in London, and one of our PhD Students Nathan Stephens wrote up his thoughts for a Dementia Researcher blog. We also presented at an internal University of Worcester Research Seminar, looking at ‘The challenges of reaching the right people’. This is something we’ve considered in a previous blog post, but this time we focused on our experiences with two current projects: Worcester Life Stories and Get Real with Meeting Centres. Part of the presentation looked at the challenges faced in our Get Real Work Package looking at why people don’t attend Meeting Centres.

Introducing CAMBUS

This week we’d like to let you know about an exciting new initiative that has started in Herefordshire and Worcestershire. The Coffee and Memory Bus (CAMBUS) scheme currently comprises two minibuses/vans, which will travel around Herefordshire and Worcestershire reaching out to people in their community and providing a safe and friendly space for people to enjoy a tea or coffee, have a chat, find out useful information, and even start creating their own life story on the Herefordshire & Worcestershire Life Stories platform.

It can sometimes be difficult for people to access support services or find out about what is available to them, so this initiative aims to take that support and information to people where they are. Maybe they have concerns about their memory or a relative’s memory and aren’t sure what the next step is. Maybe they just want to be a bit more social by having a drink and a chat with others. CAMBUS provides those opportunities.

ADS is still going strong

At the end of March we said a fond farewell to Professor Dawn Brooker MBE as she retired, although it was more of an ‘au revoir’ as she’s still going to be working with us as an Emeritus Professor from the Autumn. In this blog we take a brief look back at Dawn’s time with the Association for Dementia Studies (ADS) and bring you up-to-date with our plans for the next phase.

Dawn’s leaving do!

Dog Walking Challenge for Dementia UK

This week we hand over to Senior Research Fellow Teresa Atkinson to hear about the fundraising challenge she’s taking on in March.

Physical activity has never been high on my ‘to-do’ list, but the idea of a dog walking challenge really caught my interest. Dog walking is something close to my heart, as is the cause I am raising money for – Dementia UK. 

The Hennell Award winner 2021

A few weeks ago at the University of Worcester graduation the latest winner of the Hennell Award for Innovation and Excellence in Dementia Care was announced. A huge congratulations go to Sue Ashcroft, who is the Approaches to Care Lead for Dementia and Lifestyle Services at Care UK.

Sue with Suzanne Mumford (Head of Nursing, Care and Dementia at Care UK), who nominated her for the award