Pre AAIC Conference…Part 1

So following on from yesterdays blog, Friday saw me as the first speaker at the pre AAIC conference (Alzheimers Association International Conference).

I’d done a reccie of the venue the evening before so I knew where I was heading and had it logged into my walking app as well, just in case………

I made my way in plenty of time and was met by Anna Grinberg-Saull who immediately noticed they only had little cups, so asked them to find me a mug – instant brownie point!
Many familiar and unfamiliar faces came and said hello, many countries represented here, Canada, Netherlands & Norway which was wonderful to see. It was notably lovely to see Matt Murray from the Alzheimers Society, who I hadn’t seen for ages, and so nice that Peter Mittler was also there.

Colin Capper said the first hellos and went through housekeeping, including the fact that there was due to be a fire alarm😱 Important things like # PPIindementia was the hashtag for twitter (and which I forgot to use🙄)
Patient and public involvement is defined in many different ways. Today, we may look for definitions – research should be with and by people affected by dementia.So how do we effectively involve?

Pauline Tardiff from Alzheimers society in Canada then said hello as it was a joint event between both countries.

Then it was me to be the first speaker, where I spoke about  how research may not be for everyone but it’s our right to know about research and be supported to take part if we wish to do so. Research can give us hope for the future. How overprotective family as well as healthcare professionals can deem it inappropriate for us to take part. What I’m forever saying is ‘To normalise talking would be to normalise involvement’. The public need more information on the true meaning of research. I said how, in my region we have ‘research’ on the agenda of the induction programme for all Humber NHS staff, no matter what their job.

Thank you Matt for the photo:)

I spoke for 20 minutes so said loads of stuff and it seemed to go down very well from the enthusiastic applause.

Next up was Simon Denegri,who spoke about how the NIHR (National Institute for Health Research)were so pleased to be involved here.’From little seeds amazing things do grow.”
He was glad I started my talk about human rights. He showed a slide with a definition of ‘subject’ – a person or things that is being discussed, described or dealt with. He spoke again about the importance of language and showed a research picture that used the word ‘guinea pigs’ which we must move away from and instead replace by ‘Partners’ – research carried out with and by rather than to and for people
Things were well if done in partnership – just as the relationship between person with dementia and their supporter is key, so is the partnership between researcher and person affected by dementia.

Loved this slide. – ‘health has two sides and one of them is you”

He spoke about INVOLVE and how it was established in 2006 – it’s funded and part of the NIHR. Although I must add, that they declined my application to be involved with them ………. INVOLVE tries to facilitate the training for researchers to understand how to involve patients. James Lind Alliance come under the umbrella of NIHR and are brilliant at engaging patients to set priorities for research.
He stressed the point of not involving people when you’ve established your research, involve them from the start.
All evidence shows that if you include patients as partners, it strengthens performance and success.

Nice slide of developing an international network..

Public involvement is a must have. But the next challenge is how can we now make best use of evidence.

Peter Mittler spoke of the need for a finer balance between research on cure and research on care. How can we get more social science researchers involved. What can the biomedical community do to give more support for social science research? Simon said we need to challenge funders to improve the funding given to social sciences researchers.

After a much needed cuppa or two, and lots of conversations with lots of people, it was the turn of Larry Chambers, Direct of research of McMaster University in Canada.He chaired the objectives of the table discussion that was to follow.

Ours was a multi national table featuring Norway, Canada in abundance and UK. We were given the support question. “How can people living with dementia and their caregivers be supported to become involved in research?”
Our table came up with loads of ideas, but I was feeding back to the room so said, what I hope were our main points of:

Everyone needs to change their attitude to research and allow research into everyday conversation. One clinician suggested having it as part of appointments in memory clinics.
Flexibility and approachability – train researchers how to approach prospective participants because not everyone instinctively knows how. Important to communicate and be accessible the findings of the research.

Matts’ group used the analogy of a bicycle – One wheel Process, One wheel person driven. If the 2 work correctly, you have a working bicycle – wonderful!

We have to translate research into practice.Peter Mittler emphasised the part the CQC (Care Quality Commission) can play on ensuring best practice is implemented.

Phew! A busy morning so will leave the afternoon until tomorrow😊

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 “Pre AAIC Conference…Part 1

  1. Wendy, thank you so much for your blog. I am a very young person (19) and do not have dementia, but I do have cerebral palsy which can affect me in some similar ways to what you describe (I have trouble finding my way around as I have very poor visual memory, for instance). I find your description of similar trials very helpful, and your blog is very interesting to read. Hope things are going well for you at the conference. Please keep writing.

    Warmest wishes from Australia

    Liked by 1 person

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