This week, Jo and Ilianna ventured up to Big London Town to attend the Alzheimer’s Society Annual Conference at The Oval.  The conference agenda contained a star-studded cast of rousing and inspiring speakers – including none other than Rt Hon Matt Hancock, Secretary of State for Health and Social Care, Richard Madeley, and several key individuals from the Society. But the theme of the conference, ‘inclusion’, came through loud and clear in every session, as people living with dementia shared their experiences from the stage and the audience.  It was a pleasure and a privilege to be amongst the many inspiring delegates (over 600) and speakers (over 100) and to mark the 40th anniversary of the Society.

We were excited to share the early findings from our systematic review of qualitative and quantitative evidence to improve the experience of care for people with dementia in hospitals (our Caring About Care project) in a dedicated session on Dementia friendly hospital initiatives.

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Although we are mid-synthesis and were only able to present a small piece of the overall work – our main objective was to raise awareness of the project within the dementia community.  It’s really important to us that the findings from this project are useful to those who are living and working with dementia in hospitals.  We wanted to start conversations, make links and contacts and invite people to join our Caring About Care Discussion Forum.  Over the coming weeks and months we’ll be sharing more of our preliminary findings on the forum and asking for views and opinions.  The overall aim of this part of the project is to co-produce some ‘pointers for service change’ that can lead to a real difference in dementia care in hospitals.  Please join us!

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We were also thrilled to have a question selected for a Question Time style panel session with Sandy Sweet (Volunteer ambassador, Alzheimer’s Society, Julie Ogley (President of Association of Directors of Adult Social Services in England), Caroline Dinenage MP (Minster of State for Health and Social Care), Professor Steve Powis (National Medical Director NHS England), Richard Murray (CEO, The King’s Fund) and Kathryn Smith (Chief Operating Officer, Alzheimer’s Society).

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The question we posed was:

‘In the panel’s view, what is the one most impactful change that could be made to improve the experience of care for people with dementia in hospital?’

Panel members highlighted that staff training and increasing staff numbers are important elements of improving the experience of care in hospitals.   Sandy Sweet, was more specific about the type of training that might be necessary saying “spending time with people with dementia and seeing how well-trained staff interact and deal with the symptoms of people with dementia should be part of staff training”.  Training is also a prominent theme within our Caring About Care project and we hope to be able to add to the knowledge in this area in due course.

 

Of course we also came home brimming over with ideas and stories to share with the team back in Exeter.  Here’s a few of our highlights!

  • Get talking: We loved the Alzheimer’s Society Dementia Action Week video that encourages us all to start conversations with people with dementia and urge you to take a look – it’s only 2 minutes long and is sure to make you smile. We were equally taken by the idea of Conversation Cards presented by Nicola Taylor, Regional Manager of the charity Alive. These cards are a free resource that can be used to support a sense of identify and social contact and to stimulate discussions and memories.  The idea of using items to stimulate conversations was of particular interest as one of the key themes in our recently published systematic review on the use of robopets in care homes was that they provided a stimulus for conversation and social interaction. Although with a slightly different aim (to improve co-ordination of care between settings), the interventions discussed by Rebecca Jarvis (Co-ordinate My Care) and Zoe Harris (My Care Matters) also served as a stimulus for conversation between people living with dementia, their families and other care providers.  Co-ordinate My Care is an electronic tool to facilitate transitions between care home and hospital being rolled out by the Health Innovation Network in South London.  My Care Matters is a simple paper-based information sharing tool for use at the bedside in hospital wards.  Both appear to be useful additions to care but have not yet been formally evaluated.  Finally, on the topic of communication and conversation, Pippa Collins (Clinical Doctoral Research Fellow at the University of Southampton) discussed the importance of really listening to what people living with dementia have to say including picking up on non-verbal language cues.
  • United Against Dementia: Fiona Carragher (Chief Policy and Research Officer, Alzheimer’s Society) and Lenny Shallcross (Executive Director, World Dementia Council) gave inspiring and heartfelt speeches celebrating the Society’s commitment to fund research to bring about real advances in dementia care. Lenny applauded the people who have stood up and made a difference by speaking out.  This sentiment was echoed in a later talk given by Larry Gardiner who urged people to Join the 3 Nations Dementia Working Group – a group that is providing the voice of authentic lived experience in policy and governance conversations and in the parliamentary process.
  • Choose your words wisely: Many times during the conference we were reminded about using appropriate language – perhaps the most memorable of these was during Matt Hancock’s address when he was reminded that people living with dementia do not like to be referred to as ‘suffering’! Choosing appropriate language is essential if we want people to listen to what we have to say. As researchers it can be a continual challenge to keep track of preferred terms especially when we spend our days embedded in research papers that often use outdated terms and those not commonly used within the UK – some other preferences we picked up on were ‘care partners’ in place of ‘family carers’ and ‘responsive behaviours’ in place of ‘difficult or challenging behaviours’.
  • How did they do that? New and interesting methods are always fascinating. We loved the idea of walking interviews with people living with dementia from Katie Gambier Ross, using home visits as a method of educating undergraduate health care students about the everyday realities of living with dementia from Yvonne Feeney and Lauren Wonnacott (Time for Dementia) and the insights into involving people with dementia in all stages of a systematic review from Jemima Dooley.
  • Concluding comments: John O’Brien (Professor of Old Age Psychiatry, University of Cambridge) ended his whistle stop tour of recent research highlights with these three top tips: Look after your brain, if you are concerned seek help and consider volunteering for dementia research (healthy or not).

It was a really busy couple of days, talking, sharing, learning, catching up with old friends and colleagues and making new contacts.  A huge thank you to the Alzheimer’s Society for the opportunity to attend. We hope to continue many of these conversations over the next few months in person and on our forum as we share the findings of the Caring About Care project and endeavour to make the final report as useful as possible.

 

Abbott, ROrr, NMcGill, P, Rebecca Whear MSc, Alison Bethel PGDip, Ruth Garside PhD, Ken Stein MD, Jo Thompson‐Coon PhD. How do “robopets” impact the health and well‐being of residents in care homes? A systematic review of qualitative and quantitative evidenceInt J Older People Nurs2019;e12239.   https://doi.org/10.1111/opn.12239

Photo by Kyle Glenn on Unsplash