Alzheimer’s Research Network Conference – Day 2!

Another reminder first, that my blog is my memory, and I don’t want to forget any of this, hence all the words:)

Started off the day having breakfast with Colin – there was lots of comparing notes and laughter – great start to the day .On the way out I finally met Karen Watchman from West Of Scotland University who is a new ‘Twitter friend’ – so nice to say hello to Twitter people:) I had a call with Piers Kotting booked for 8 to talk about our venture into the House of Commons on the following day – we decided on our plan of action!!

The second day of the conference held just as much anticipation as the first. Here are the highlights of the day……..

Dr Doug Brown started off with an overview and future thoughts.
How the Society, through initiatives, was creating a change in society to improve the quality of our life. They now needed to measure the impact – ‘making evaluation count’ around service provision.
250, 000 copies of Dementia Guide have gone out
It’s been likened to the Haynes manual for cars – love that analogy –ha!

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We don’t just want to fund research – we want to translate this into implementation.

We want Non drug intervention to improve health and well being of people with dementia – implementation is a science in itself and more work needs to be done
So much else was said by Doug but it would fill my blog so hope these were the key points.

There then followed a series of talks, the first 3 being very medical:
I tweeted that there was a need for everyday analogies like John & Jack used yesterday – Such a shame for those lay people amongst the audience as they used medical acronyms and terminology which was above most of us and some speakers spoke too fast for people with dementia – learning point for next time maybe as it may have been their first time of speaking and I don’t want to put them off altogether…….

The 4th talk was around the START project (STrAtegies for RelaTives). Psychological support for carers is patchy and not always available.

“Services always seem to materialise at crisis point. “

‘START’ was made up of 8 sessions –e.g. making a behaviour plan, planning for future, using your skills in the future – practical sessions for carers.. Was this method clinically effective? – after 2 years those who hadn’t received it were 7 times more likely to be depressed than those who had received it. Quality of life was better. Cost was £232 per carer to deliver – costs for person needing care was £1368 lower than in control group. They talked about implementation – great Twitter comments on this – delivering support and advice should never stop and needed to be revisited as needs change. Great talk:)

After a much needed tea break – by the way, never eaten so much over 2 days as I have here! – it was the turn of Giovanna Malluci – Professor of clinical neurosciences & Consultant neurologist who has now officially become my new best friend as she was one person who stunned me and the rest of the audience into hope for the future – I just hope it’s not false hope. She also used a mixed delivery for a mixed audience .- maybe she’d had time to catch my tweets!

She showed a great slide showing healthy brain cells and degenerative brain cells and asking ‘what’s killing the brain cells. She also used a ‘Deckchair analogy’ to explain misfolded proteins and had a great slide for that!

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She showed fascinating films of mice – diseased and cured mice – amazing – the drug was restoring proteins. . I was so entranced by her hope that I must have stopped typing as I don’t have many notes!!! After listening to this talk it gave me so much immediate hope – I asked at the end:

‘having found my new best friend’ how far in the future are we talking about’?

and she was very positive – ‘we need to do the PET scans’ – ‘come and have a pet scan’ – must find out where they’re doing this!! I got home to find an article published today about this promising research – http://www.theguardian.com/society/2015/jun/30/alzheimers-treatment-researchers-licensed-drugs-halt-brain-degeneration?CMP=share_btn_link

I would ask all biomedical researchers to take a leaf out of John and Jack’s book from yesterday. Jack, a young, enthusiastic Phd fellow from New Zealand demonstrated how it is possible to address a mixed audience– make it fun, make it real and use real analogy.
Maybe they were too conscious of sounding basic – but some basic is good. Even professionals can benefit from going back to talking in basics. Maybe they’re so used to talking to an academic audience that they’re skills in presenting in a real way to lay people has been lost or maybe they see it as dumbing down their complex information – I’d like them to see it as a challenge.

Lunch time – Great curry for lunch:))and was able to sit with Professor Pat and Dr Mel from Sheffield who are always great company – me and Pat exchanged stories about Billy and Neville, her cat………..:) always a treat:)

The first part of the afternoon we had to choose a seminar to attend. My first choice was what was out there to help researchers. This consisted of a talk by Dementias Platform – medical research council. Whose aim is to provide a database accessible to the wider scientific community. All data about studies would be stored here making it easier for researchers to have access to large amounts of data.
Brains for Dementia Research – Paul Francis Director Brains research spoke of
‘What we know about dementia comes from people with dementia both while they’re alive and when they’re dead’ and explained how their centres provide a valuable resource for researchers to request brain tissue.
Andrea then talked about Join Dementia Research – to encourage researchers to register their research on the database.. Cuts out all the red tape for researchers.
I used the opportunity at the end to encourage researchers to register their study – From a patients point of view- if we knew studies were registered on one website it would make it easier for patients to find and volunteer.

Also I want all researchers to realise that ‘research’ isn’t all about clinical research – we must embrace and encourage social and tehnological research to help us in our lives with dementia.

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Operational manager for Alzheimer society then told us what’s happening in her region in the Greater Manchester area.
Telling us about her services just highlighted the inequalities around the country – back to the post code lottery again.
Salford has been chosen as a test bed for devolution and Dementia. Salford will develop it’s model for integrated care across greater Manchester. They’ve got 90 days – to understand existing services,……….To improve the quality of lived experience
The aim is to bring about attitudinal change to dementia friendly communities – support people with dementia,  coordination of care and services exploring new financial models, exploring new emergent partnerships, with the aim being to reduce dependence on health and social care services.
Driver is to empower people to remain independent for longer to reduce pressure on services. Great initiative if words are translated into actions

After the last break of the conference my brain had slowed down to snail pace so words were taking longer to filter through making listening harder so I had to stop tweeting and I really took in very little I’m afraid.
Last speaker wasn’t talking to an empty room as at most conferences!– lots of people remained – as the speaker said, ‘in our very blingy room’

amazing chandaliers!
amazing chandeliers!

Anne Beasley wrapped things up – filled with hope through hearing people like Gionavana this morning with me as new best friend. She spoke of learning about the harms and benefits accumulated over life time – people can affect their future. Most of all:

‘No one should feel alone with dementia’

Fantastic mix of people, fantastic 2 days! I know I’ve missed lots out, not least the great conversation  we had on Twitter – I’ll be doing a blog to show the benefits of Twitter next week. I could thank all who organised the event but I won’t because I know I’ll forget someone…….
Best of all it was great being on the ‘A’ table – I’m talking of course about the North Yorkshire research network table led by Barbara.
The best part of the conference was meeting so many wonderful people……..

The A Team! Barbara, me Sandra & Colin
The A Team! Barbara, me Sandra & Colin

 

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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.

4 thoughts on “Alzheimer’s Research Network Conference – Day 2!

  1. It sounds like you had a great time Wendy, and that there was a lot of interesting and exciting research being shared (as always!). Thanks for sharing on Twitter too, it was really nice to be able to follow along for the two days even though I wasn’t there.

    It’s very exciting times for research and I’m so pleased that you’re able to learn about it and contribute to it in so many ways – the involvement is invaluable and really will make the difference 🙂

    Like

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