Event at Whitehall – Part 2

So today is the rest of the event started yesterday.

Event was so near Big Ben we had to stop at 11 and 12 O'clock to wait for the chimes
Event was so near Big Ben we had to stop at 11 and 12 O’clock to wait for the chimes

Dan Pulford – senior clinical studies officer was next to speak to take us to lunch. It was a Technical talk which I thought was going to go over my head but he was very good as he included memory tests for audience participation, a toy gun, videos and provided a glossary!
He reasserted the fact that the post mortem remains the only conclusive way to diagnose Alzheimers. Because of this, Brains for research people had found that 1 in 6 people get misdiagnosed.. Cause still unknown so we have to piece together what is known.
Cognitive function on daily life is used to diagnose – some clinicians don’t seem this as scientific enough – however it has to be embraced as it is reality but it has to be remembered that each patient is different and present with different issues

Only symptom modifying drugs available were licensed in 1996 :

It’s nearly 20 years since the last drug, Donepezil was discovered – this is unheard of in other diseases which shows how far behind dementia lags.

He did a 5 word memory test – showing a list of 3 letter words and multi-syllabic words – and then picked on people to see how many they could remember – I said not to ask me:)!!

He spoke of the ‘Verbal fluency’ tests we do, e.g in a minute name as many different words beginning with P and name as many animals beginning with any letter. I tweeted’ these tests are exhausting to complete’ as the mere process of thinking is exhausting……
An interesting talk, mainly made interesting by the delivery.

We were very nearer Big Ben so 11 and 12 o’clock there was a pause!
Next came lunch – always a nice occasion.!

Lunch was followed by Professor Claire Goodman who spoke of Jennifer Bute, who uses the wonderful sentence –

‘You live with dementia you don’t suffer from it.’

She spoke of the NIHR Research capacity in Dementia Care programme with 4 new Doctoral centres in Greater Manchester, East of England, South West Peninsula and Wessex comprising in total of 13 fellows. The aim of these is to nurture and develop future dementia researchers so they’re motivated to stay in dementia. They want them to be patient driven – brilliant and along the same lines as the Alzheimer Society Doctoral Centres.

Next it was Me and Warren to be interviewed by Nichola – as usual I don’t have any notes for this but I think it went down well as there were lots of kind tweets about it. We were asked our views on taking part in research and how researchers can engage people better and make it easier, more acceptable to take part in research. Researchers can learn so much from carers and people with dementia about the challenges we face when taking part in research, which they would otherwise not think of.  I suggested a ‘pop up’ shop in a disused shop on the High Street amongst other things in order to raise awareness.

Simon Denegri introducing me & Warren with Nichola bewteen us.
Simon Denegri introducing me & Warren with Nichola bewteen us.

After us came an interesting talk by Professor John O’Brien from Cambridge. He gave some interesting stats about Donepezil – namely not to stop the drug unnecessarily as it could trigger a steep decline – must remember that!
Amyloid production happens about 12 years before you see it in Mild cognitive impairment – we may be laying down amyloid 30 years before we’re diagnosed Alzheimers – fascinating fact.

You can see my notes get less and less as the day progresses. It is exhausting and my brain just slows down to a snail pace come the early afternoon……..

Professor Martin Rosser, who I’ve met many times through Join Dementia Research and who is the NIHR Direct for Dementia Research – spoke of gatekeeper issue and knew it must have come from me –ha! He said clinicians find it difficult to broach the subject of research. I’d already said that Clinicians should empower people with dementia to make their own decision and Join Dementia Research allowed this to happen. We have to change the culture. As always, I spoke of ‘involvement’ rather than ‘research’ as a better way to engage people and gain their trust.

A 'washing line' was used to peg our 'pledges' to carry forward - great one by Claire:) - my support for the day
A ‘washing line’ was used to peg our ‘pledges’ to carry forward – great one by Claire:) – my support for the day

Finally Nichola Verstraelen and Dr Fiona O’Neil brought the day to an end and spoke of the outcomes of the day. The need to approach participants as people and create a guide for new researchers into dementia using patients as sounding boards. They also want to create a Twitter group for dementia research – I’m sure I’ll be joining in their conversation.

So nice to see lots of tweeters at this study day and so nice to see that research is in such enthusiastic and good hands.

 

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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.

2 thoughts on “Event at Whitehall – Part 2

  1. Great detail as always Wendy. Noticed there was lots of discussion about treatment research, unfortunately it feels like there hasn’t been that much progress, though the G7 has pledged to achieve a modifying treatment by 2025. What do you think about ‘non-pharmacological treatments like the My Life software or Talking Mats? Do you think they offer meaningful interventions?

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