Alzheimers Society Research Conference

Before todays blog, I feel I have to say how horrified and sad I felt on hearing about the bomb in Manchester last night. To target children is barbaric. I can’t imagine how those with loved ones who have died or who are injured are coping today, or the family and friends of those still missing. Love and hugs to all those affected.

😢

So last Friday saw the second of the conferences for the Alzheimers Society. Following on from the annual conference came the research conference. Sorry for the long blog, but remember, it serves as my memory as well,,,,

The day before had been verrrrrry long so I wasn’t holding our much hope of being any use but at least I was just listening in theory…….

I arrived to find a much smaller, less chaotic day unfolding. There were still almost a couple of hundred people but it was much less than yesterday. I arrived to find a cuppa tea and then went and sat with Barbara, Sandra and Lyn from the Yorkshire A team of network volunteers.

Doug spoke about what we’ve achieved since 2012 and what the future holds.

He showed a great slide of how much we’ve increased investment in research -spending has tripled. It was sad to see that the number of research network volunteers hasn’t tripled but I know there are plans afoot to put that right.

The biggest success for me is the introduction of the Dementia Research Leaders programme, especially the Doctoral training centres – investing in the researchers of the future.

The future over the next 5 years looks very exciting. They will announce 8 centres of excellence with the first 3 being research active in 2017/18. They’ll be launching them in the summer.

Next up was Prof Paul Mathews from Imperial College London. He’s part of the new Dementia research institute. Looking for earliest changes in Alzheimer’s disease with UK Biobank. How can earliest stages be diagnosed accurately? We currently diagnose based on symptoms and signs, It focuses on the disease after it’s presented.
Maybe we should look at it differently – looking at what makes people susceptible to the disease.

There’s much good work being done in imaging, especially by Nick Fox. Far more sophisticated ways of identifying and giving far more accurate diagnosis.
A tad over my head but sooo interesting for the bits I did get ……..he went way over his time which I never find acceptable as they should time their talk just the same as everyone else so it doesn’t throw the rest of the timetable……..end of moan….

Cuppa tea time and I was able to look at the posters, one of which was a collaboration between me and phd student from Bradford’s Doctoral training centre, Courtney Shaw

I was also able to have a nice chat with the lovely Mel Hall. I was a monitor on her research with Prof Pat Sikes at Sheffield.

After that it was time for a get together of the Research Network volunteers and Anna Grinberg-Saull opened the session.

Doug Brown said how unique we were in the charity sector for having the research network volunteers.

So now a Q&A session. Many questions were asked and many of them wanted reassurance that non biomedical research wasn’t going to be sidelined for biomedical research in the new Dementia Research Institute. Doug tried to be reassuring in his response and said we needed to make sure we recruit quality research and researchers to ensure we have collaborative working. They want to bring established researchers into dementia – e.g. A sleep researcher who understands what happens to the brain when we sleep would be ideal – When we’re awake we’re damaging our brain and we know how, for people with dementia, sleep is often disturbed – I know that first hand as my average is 3-4hrs per night of sleep/wake/sleep/wake, my eyes wide open behind sleeping eyelids.

Next question was around how are we going to develop the network volunteers and increase numbers. Anna answered how they’re undergoing a review of the whole service and will be looking for feedback and involvement of volunteers.

Someone then asked how are we going to encourage more members to become monitors. I personally find this the most rewarding part of the role. Meeting with researchers and hearing their trials and successes is amazing – would recommend it to anyone.

The final question was around poor communication. Doug answered how it’s the top of the list to get right. The symptom of the society growing quickly means we’re now in the process of upgrading IT systems so they’re joined up, which is much needed. Communication is a mission in any organisation.

Final workshop before lunch was Innovation and demonstration a showcase by Ruth de Saints Croix, innovation and research development manager introduced the session.

We saw 3 projects, Barry Smith from Northern Ireland was the first and his project was around Deaf and dementia. Sadly he spoke far too fast for me and having a northern Irish accent meant I couldn’t follow enough to understand the project, but I’m sure it was a very useful service for those deaf who also have dementia.
Emma, who is deaf and from Manchester Uni, signed her talk while someone spoke the words on her behalf. The process of consulting with deaf people had never been used so they had to consult with them on the best way to work together. Great talk.

Fidget Widget Toolkit was next for people affected by later stage dementia. The idea of the project is to de stigmatise fidgeting in relation to dementia.

Dementia Friendly General Practice Project was the final project. They’ve moved from innovation to implementation.
After a lovely lunch it was time for my last workshop.

“Which type of dementia. – Getting a differential diagnosis.

Dr Mario Parra spoke of Mapping cognition onto the continuum of Alzheimer’s disease. Many tests in the early stages simply don’t pick up changes but he is looking at identifying subtle changes before symptoms become apparent. Another speaker who spoke very fast and lost me totally but the slides helped me follow.

Felicity Guest from Exeter – Learning Key factors for dementia diagnosis. Think this phd student was trying to follow the example of Dr Mario and spoke very fast again and I didn’t understand it but it was 13.49 – almost the switch off hour of 2pm – after 2 very long days….so it was probably me.

Riona McArdle Newcastle uni talk was”

‘Is gait a useful bio marker for dementia diagnosis?’

I suddenly woke up again….

Different dementias present in a similar way which leads to high rates of misdiagnosis. So researchers are now looking at blood markers, imagining markers, but Ríona is looking at walking. People with neurological diseases walk differently.

There’s lots of research on cognition and walking. ‘We know that people with dementia walk differently’ I’m looking to find a unique pattern. “

She showed us film of 3 different people walking and you can see the difference but the technology they use picks up the subtleties. There was a marked difference in someone with Lewy bodies compared to someone with Alzheimers, but you could see the person with Alzheimers walked differently to the control person without dementia.
The walking changes are walking changes in the brain. There is other research going on with imaging and gait. Fascinating subject, as me and my daughters have quite clearly noticed changes in my gait but my clinicians say it’s unrelated to dementia….mmmmm

Note to speakers – talking very fast in order to cram more stuff into your talk is not good if it means I can’t follow the talk..

I was going to stay for a final plenary talk but my brain was frazzled after 2 wonderful informative days. I was present for the first 15 minute talk but I didn’t even type what it was so I then decided enough was enough and made my way to the station.

A great 2 days and I had lots of people looking out for me making sure I was ok. The best thing of all was seeing so many old friends and meeting many new twitter friends………ready to hibernate now…..

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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