Conference at The Deep – Hull – with Professor Esme Moniz-Cook

Part 1

Last Friday I was invited to speak at the first conference in my new county. I’d been contacted by Cathryn Hart (Programme manager) and Professor Esme Moniz-Cook (Centre of Dementia Research & Practice –Hull Memory Clinic). The conference appears to have been a means of disseminating the results of research recently having been completed on Residential care and Family Care. It’s title was “Challenge Demcare Dissemination event”.  Here’s a shot of the programme although not sure how much you can see!

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Esme had asked if I’d start off the morning with a talk around misinterpretation of behaviour by people with dementia.

First person I met was the wonderful Warren who is also a Join Dementia Research champion. It was so nice to meet up on what is now home ground for both of us.

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I ‘d arrived an hour before the start of the conference as we’d been told we could have a tour around the Deep before the start of the conference. It’s described as a ‘Futuristic aquarium’. I would have been quite happy sat infront of the tanks watching the fish all day – it was very peaceful. I hasten to add that I was able to walk round before it opened to the public……………they would have had to keep the doors locked for the peace and quiet to have remained.

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It was nice to finally meet Esme as I imagine I may meet her again at some point as a patient or a participant in one of her projects. She is obviously thought of very highly in the world of dementia. She introduced me to the lead neurologist on young onset dementia at Hull royal (whose name I forgot to write down!)
I sat with Warren and after we’d had a catch up he introduced me to June Cooke from Butterflies Memory Loss support group. This service is advertised in the memory clinic and some GP practices. It appears that in this region Newly diagnosed people have a 10 week course on cognitive stimulation therapy (not actually sure what that means!). June attends one session to advertise Butterflies. They also have a session on Join Dementia Research. By chance I sat next to Saba Alam who delivers that talk!. Margaret McHugh –Service Manager for the area from Alzheimers society was also on our table.

In theory it sounds like people in this area have access to good post diagnostic help and advice – would love to see it in practice though to hear the content in more detail. Might have to get myself a place on one of these 10 week sessions – after all I never had any post diagnostic support such as this whilst I was living in York………….It would be good to see if it’s as good as it sounds……

Anyway, back to the conference.

There appeared to be about 100 people from all over the country and from many specialties. The Chair was Professor Leslie walker from Hull University.

Local MP Diana Johnson
Local MP Diana Johnson with Esme & Professor Leslie

Local MP Diana Johnson opened proceedings by saying how she was very proud of her association with Esme and the University. It has a joint medical school with York! . She’s going to sign up to Join Dementia Research and will put it on her Facebook to encourage others – brownie point earned but only if actions accompany her words……. She spoke of how Hull often gets a bad press but how we need to celebrate what’s been achieved around dementia by Esme and her team.

It was then my turn – I began by giving a brief history of my story and my involvement with Join Dementia Research.

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I then spoke of turning round the misconception of ‘challenging behaviour of patients’ into ‘challenging behaviour of staff’. When I saw the headings for all the various talks throughout the day, I was disappointed to see ‘Challenging behaviour of patients’ in most of the titles. Because of this I decided to change my speech slightly and question these headings. I simply wanted to give the audience food for thought. I wanted them to see how offensive this might appear to me. It seemed to go ok but I’ll talk more of my feeling about the conference tomorrow.

What followed for the rest of the day was feedback from the research. First up was Professor Bob woods from Bangor University & co chief investigator of challenge demcare.

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He acknowledged that behaviour is often the issue of the staff and not the person. He gave an interesting definition of challenging behaviour:

“Behaviour in dementia care can be described as ‘challenging’ when it causes distress to the person or others (such as the family carer) thus threatening the quality of life of one or both parties” (Feast et al 2015)

He stated that challenging behaviour occurs in an interaction with the environment ‘expression of an unmet need’ it’s up to the staff to find out far more about the person – aggressive behaviour has a reason.Detail is needed for an action plan in order to make a difference.

What did staff learn – see slide – question is – is that enough?

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Then Professor Graham Stokes of Bradford University spoke – he’s also the global director of Dementia Care, Bupa.

Title: “The Effectiveness of online intervention for Challenging behaviour in Care Homes”

He gave the staggering fact that 40% of all people in care homes have dementia. So for me, why isn’t there more attention paid to the understanding of dementia???

His was a fascinating talk but more of that tomorrow………..

 

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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 “Conference at The Deep – Hull – with Professor Esme Moniz-Cook

  1. Just a wee thought Wendy. In Scotland we have worked hard to change that term challenging behaviour and we use the words ‘Stress and distress” as we feel that these feelings are at the root of the behaviour we see. Many people have no other way of letting us know something is wrong and we need to help.

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