Research network volunteer, Paul gill

Alzheimer’s Society Annual Conference 2018: A view from Paul Gill, living with dementia

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.

Paul's story

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) 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.

Sharing experiences

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!

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12 comments

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Thank you Paul. You say that the paradox of Cancer treatment being paid for by the NHS but not dementia was discussed. I have recently lost my wife to Alzheimers and because of the funding injustice I was forced to care for her well beyond my capacity to do so, being 81 years old and partially disabled myself. Her relatively brief stay in a residential care home, 14 months, cost in excess of £36,000. Had she lived longer then that figure would have been greatly exceeded,leaving precious little of our savings. However, things are not going to change while there is no political will. When a partial "solution" was adopted by the coalition government, then deferred by Cameron, then discarded by May in favour of a green paper with yet more consultation (which also seems to have been forgotten) she said while campaigning "Nothing has changed, nothing has changed"!). How right she was, and nothing will change as very few dementia sufferers are able to vote. Our target has to be the politicians and our weapon has to be the threat of tactical voting (by those who can vote!)

Alan I’m so sorry to hear of your loss – severe emotional pain is exacerbated by worry about the crippling financial expense. Re the charges, I feel very strongly that both the public and the spirit of the law are on our side on this. HM treasury rules say you cannot give money to one group of people whilst denying a similar group. Ten years ago, my former colleagues and I were part of a successful campaign led by Dr Ros Altmann to get pensions compensation when our employer went bust. We had cross party political support but successful techniques require being in the news every month and to visit MPs –in parliament if necessary –to ensure our views are heard and promises are reported. Yes, -the country can afford it but Jeremy Hughes needs our help to make it happen.

Paul

Paul Gill's report was particularly inspiring because he demonstrates such a clear-sighted and positive attitude to his illness - good on you, Paul!

I have found it very hard to sustain a forward-looking state of mind in the face of lung cancer followed by Alzheimer's, and most online accounts of other peoples' troubles concentrate on the problems rather than helping us to find the positives.

Paul reminds me that being gloomy is the worst possible response to serious illness. Enough digging the hole! I'll stop being gloomy this minute, get out into the wide world and go do some stuff!

And thank you Paul, for giving me the nudge!

Cheers, Martin Corrick

Martin, thank you for your kind words. I have been lucky in that I’ve had relatively little pain and believe I can still read and understand documents. I know this won’t last forever but everything I need to do is in place so I can concentrate more on the present. It’s a personal decision but I’ve also signed forms for Brains for Dementia so I hope something positive can come from my illness.

If you need a document to be read to you, you just send me the document and I will read it for you over the phone as I am in Canada but via Skype or FaceTime I could reach you and I could the document from, French or Spanish to English.

Good Report Paul.

Was there anything on the importance of social activities?

Jack Stone

To be quite honest I don't specifically remember it but former software engineers aren't noted for their social skills or tact! Wendy Mitchell's talk was largely on the help that she got. I personally attend a number of local dementia groups and really try hard to allow people to talk about their area of work or holidays without feeling pressurised. Based on experience with my father, I try to make sure there isn't extraneous noise and that people with hearing problems are close by and in a position to lip read.

I think the work you do is so praiseworthy. Thank you. My wife is in a Care Home and her condition is gradually deteriorating. I, and my family, try to be as positive as possible in trying circumstances. I wish everyone involved in the Dementia 'field' good luck and lots of courage!

Howard, sorry for the late reply. You can only do your best to make her happy, its as simple as that. Don't feel guilt. Re a cure, my great grandmother had 'senile dementia' as it was called in the 1940's. Whilst there is still no cure, I do feel that the break through in Huntington's and the gene analysis techniques which became available in the last 20 years will transform research.

I am 83yrs 3 months now.My wife Sheela died nearly 5 years ago after suffering from drug induced dementia for nearly 13 years, of which last 2 yrs were really painful for me being her life partner & main care giver.Sheela passed thru the worst phase of Dementia.
I have been looking up your reports regarding the work being done by you & some Pharma companies in U S to make life easier for the patients & their caregivers.Medical research has to be hastened up to find an antidote for Dementia all over the world.Day by day social changes are taking place which make care giving tough & plight of patients heart rending.
I live in North India & feel greatly distressed to see condition of Dementia patients & their care givers.
Look upon your great Organisation for path breaking solutions.
Ravindra Nath Srivastava

Dear Ravindra, at 81 years and 3 months I could be your little brother! But brothers share not only their parents but also their experiences, and although my wife's Alzheimers based dementia showed initial symptoms about 8 years ago, the final two years for which I was her carer before she had to go into a care home were enormously stressful and took a toll on my own well being. Just last March she sadly passed away but at least was spared the suffering of the late final stage. So I can empathise with you and join you in supporting the great work being done by the Alzheimers Society which hopefully will lead to better outcomes in the future. Without their support and guidance, their comprehensive fact sheets and campaigning, carers' and sufferers' burdens would be so much worse. And I am so pleased that their presence is felt as far away as North India. Very best wishes, and know that you are not alone. Alan Brett

Dear Ravindra, sorry I've only just seen this. I admit I've little enthusiasm for care homes but life can be just too exhausting for the carer. There is only so much they can do. Whilst I'm not too hopeful of an imminent cure I think people should be better educated to avoid increasing the risk of dementia -or making it progress faster. Being somewhat overweight, avoiding diabetes and mini-strokes -TIA's -are the areas I need to concentrate on. Hopefully some of the research momentum obtained from the Huntington's breakthrough will be useable. FWIW I live in Leicester and my consultant, GP and dentist are all from India.

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