Research Network Volunteer Paul Gill, who is living with dementia, shares with us his highlights from the Alzheimer’s Society Annual Conference 2018.
Over two days, we welcomed over 600 delegates to the Kia Oval to hear all the latest news and developments in dementia policy and research.
The conference brought together researchers, policy makers, those living with dementia, carers, former carers, clinicians and many more. Research Network Volunteer Paul Gill, who is living with dementia today, shares his highlights from the Alzheimer’s Society Annual Conference 2018.
Given the conference was at the Surrey county cricket ground, the themes for this blog kindly wrote themselves - what bowled me over, what had me stumped and what hit me for six!
There were many excellent presentations. I chose those I felt I could easily understand – a particularly demanding requirement as my background is maths and computing with virtually no life sciences education.
I was diagnosed with Frontotemporal Dementia (FTD) in 2012 – arguably the best motivation for lifestyle changes.
I was expected to be in a wheelchair, unable to speak by now, but I gave up booze and started going to the gym. Fortunately, so far adverse effects have been limited to a slower walking speed and some loss of balance. Kathy, my carer navigator and I still agree that the other speaks too much!
First impressions from the conference
Two general comments - everyone had a very large, double-sided name badge thus eliminating the embarrassment of forgetting the name of the person you’re talking to or incorrectly thinking you recognised someone. When will the NHS introduce a similar simple system?
Secondly, how good it was to see young PhD students from all backgrounds still coming to the UK to do vital research. These are the dementia research leaders of the future and had their own awards presentations.
Elijah Mak, University of Cambridge winner of the Dementia Research Leader ‘Rising star award’ with Doug Brown (Chief Policy and Research Officer, Alzheimer’s Society) and Jeremy Hughes (Chief Executive, Alzheimer’s Society)
Let’s hope they enjoyed the welcoming atmosphere they deserve and which is so needed to ensure they remain in the field of dementia research and ultimately if we are to beat this disease.
The future of dementia care and research in the UK
The conference was themed ‘Taking Action on Dementia’. Jeremy Hughes, Chief Executive had attended ‘morning prayers’ at number 10. He noted the newly published green paper on dementia is a discussion document and so non-binding. He raised the importance of applying as much pressure as possible on our MPs to ensure it becomes policy.
We know that dementia is a $1trillion condition affecting 50 million people around the world already. Yet the number of research papers published on cancer outweighs those published in the field of all types of dementia 6-fold - sadly, this also reflects funding.
He also commented on the egregious inequality of treatment of cancer and dementia patients –irrationally only the former have their care home needs paid for by the NHS.
A large part of the conference focused on policy around dementia including the cost of social care and fixing the broken system. One question still stumps me, given the very high fees and notoriously low wages of their workers, where does all the care home income go?
Breaking news in research
I’ve heard Professor Simon Lovestone from the University of Oxford speak before and his presentation about big data was riveting. I had thought that confidentiality requirements still caused major problems for dementia research but I learnt that researchers can select and access catalogues of fully anonymised data from a number of countries.
This also offers the prospect of accidental discovery – statistical analysis showing that existing drugs already developed and fully tested albeit for different reasons – have unexpected benefits elsewhere or potential for further development. He also praised adaptive clinical trials which consider positive outcomes before completion and allow researchers to modify the trial to focus on more promising treatments. Professor Lovestone praised the late Tessa Jowell who took part in clinical trials and released her own medical records.
As a Research Network volunteer, I was particularly interested in the talk given by ProfessorSarah Tabrizi about Huntington’s and the idea that the methodology used – identifying and mopping up just the disease-creating molecules - could be used as a model to tackle other forms of dementia. In cases like Spinal Muscular Atrophy in children, it appears to have been very successful. Potential gene targets have been also identified and some development work is already taking place for Alzheimer’s, Parkinson’s and FTD. Only a non-biologist would have the arrogance to expect rapid results!
Hopefully next year, we’ll see more presentations about FTD.
Another highlight from the conference was author and Research Network volunteer, Wendy Mitchell describing the benefits of friendly and understanding people.
She shared several personal stories and experiences including the occasion when she met her neighbours for the first time when she mistakenly thought their house was hers! She also mentioned the value of a heart-warming relationship she has with her local taxi firm. When she rings and explains that “it’s Wendy,” they give her a list of all the journeys she’s arranged for that day, however many times she’s already rung them.
Well done to the organisers - nothing stumped them. To an outside observer it all went like clockwork!