The University of the West of England, Bristol Alzheimer’s Society and the South-West Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) ran a Dementia Awareness week last week. This included a dementia research conference.
The half-day event on 9 December was organised by Professor Rik Cheston, the co-Director for the research workstream of the Dementia Health Integration Team (HIT). Seventy people attended, including members of the public, people affected by dementia, UWE staff and students, and people from other research and dementia related organisations.
The first session was co-presented by ‘Molly’ an interactive robot, a European project led by Tina Fear and Dr Praminda Caleb-Solly of UWE. ‘Molly’ can give medication, food and drink reminders as well as providing entertainment. Their research suggests that using ‘Molly’ in care homes with people affected by dementia promotes conversation and interactions.
Next up was Mary Griffin, DeNDRoN’s Research Network Manager, who outlined the work of the network, highlighting the ENRICH project which is about enabling research in care homes.
Matt Murray, Research Engagement Manager from the Alzheimer’s Society, talked about how the Prime Minister’s Challenge has led to more dementia research funding. He talked about the importance of the concept of ‘nothing about us without us’, and how patient and public involvement in research can make this a reality.
This led to the ‘Thinking Together’ group from Staple Hill talking about their experiences of being affected by dementia, both as carers and people living with the condition. The group was created by the Alzheimer’s Society’s Anne Rollings, following a six week post-diagnosis course at Callington Road Hospital. The group has been involved in various HIT-related projects since forming in June 2013.
The next talk was by Professor Richard Gray, the other co-Director for the research workstream of the Dementia HIT, and two peer evaluators, Jill and Hazel. They discussed the benefits of using peers who have experience of caring to carry out research interviews in the PiCLED study, which aimed to answer the question ‘are primary care-led dementia services as good as secondary care services?’. This work will be published soon.
Dr Myra Conway talked about why biomarkers are so important in diagnosing dementia. Anna Puddicombe then talked about People and Research West of England, a local network to help support researchers and the public for involvement in research.
Professor Richard Gray took to the stage again to talk about the PET studies, which explored the benefits (or not as the case was found), of Protected Engagement Time on hospital wards. Professor Rik Cheston presented the development of a manual for delivering a ‘living well with dementia group’ and the findings from people affected by dementia participating in these groups. The final talk of the morning was by Angela Hudson about a project to develop a digital skills training package for student nurses, to help them understand how to interact with people affected by dementia in a ward environment.
The morning showcased the range of dementia-related work happening locally, as well as the ways that people affected by dementia are involved in shaping future dementia care and services. As a delegate affected by dementia said: “This work isn’t likely to help us, but it will help others in our position in the future”.
The highlight of the conference for many people was the Thinking Together group. Amongst other comments, participants said “To hear real stories from people as opposed to theories and observations – they provided a personal touch”, “It brought such a human element to the morning” and “It was especially good to hear from the carers and patients too. That was special”.
Rik Cheston said of the event: “The morning itself was a success, with feedback showing there was a generally high standard of presentations. However, because of factors outside our control, traffic getting into the venue was much heavier than normal which was something we regret”.
Other events held as part of the Dementia Week included two performances of the play ‘Grandma, Remember Me’, and a Memory Cafe, for UWE students, staff and friends.