“Medicine and Me – Living well with dementia”

Yesterday I was back in London, this time at the Royal Society of Medicine, Wimpole Street.

It was a gorgeous sunny day when I left home and I knew I’d be seeing my good friend Barbara from the Research Network.
My taxi was early which meant my first train was early into Doncaster for my connection but I always prefer watching the world go round than having to rush and needless to say, the train was delayed……….once it arrived it was chocca…….

It was a very impressive setting and many familiar people speaking including Dawn Brooker and Joy Watson.

The emphasis was aimed at ‘Living well’ with dementia

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Professor Nick Fox kicked off with described common types of dementia and diagnosis.

We are surviving longer and this means we have more people with dementia.
Almost 50% of cases are not diagnosed. We have to find the cause of the dementia to make the diagnosis more meaningful. Diagnosis is all about the history of the person. “What has changed” is the all important question doctors need to be asking in order to fully understand the possible cause. Cost of diagnosis is about £600, cost of caring for a year is £25,000…….

Nick described the “Agony of not knowing”. He also said that Donezepil has modest benefit but it’s been found that if you take people off it they end up in care sooner – me thinks I’ll keep taking the tablets……

Next was Joy Watson – also a person living with dementia like myself – she spoke of crossing the road being dangerous – so is going on a zip wire – we do as best we can to live well. We take calculated risks. We can help the next generation by engaging with them in conversation and openly talking to them to lessen the fear and increase the understanding.

Session 2 was opened by Professor Dawn Brooker from Worcester and revolved around evidence based community support. Their research focused on people living at home with dementia and was all about the ‘Meeting Centre Support Program”

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In the Netherlands they’ve been very good at creating socially inclusive community care.
Dawn is often asked which country is best for dementia and there is no one country – each has nuggets of good practice. The “Meeting centre support program” aids people overcome inactivity, delays them going into a nursing home, reduces depression in people with dementia and their loved ones.
They have a very local focus.- they set one up in Droitwich and is set in a ‘non-stigmatising ordinary life setting – e.g community centre, not hospital.The Underpinning theory is around adjusting to change.
“Dementia turns your life upside down” – these meetings centres help bring you back to normality. Leominster and Lutterworth are 2 more centres.

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The local town has embraced this as a local venture – there’s a huge feeling of equality as no one is identified as a person with dementia or carer or employee. Shame there’s nothing like that in my area!

Next was Shirley Nurock with the carers story.
She spoke of the “Living bereavement” – Shirley is lovely but I always find it hard to listen to ‘carer’s’ side of the coin as it always has such a sad air and very little positivity. She said she always advises 3 things to people:
Shout when you need help
Always have something to look forward to
Dream about hobbies and have a wish list.

Next up was Katy Judd- Consultant nurse for young onset and unusual dementia on the Practical aspects of care – Financial matters/state benefits/other legal matters(wills, advance decisions, driving etc)

Sadly more negative language – with a slide entitled  ‘The Burden of Care’.
She talked very fast and I couldn’t keep up with her so lost lots of what she said.

Sarah Weir – Trustee for Alzheimers society introduced  session 3 and the one I was involved in. I was up first and spoke about strategies to cope with memory loss. I spoke of the challenges faced when travelling and then in having moved house. I’ll deal with moving house and the small changes I’ve made In a blog on its own….
Next after me was Sarah Waller from Worcester on improving the environment.

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We don’t use colour in the health service very well.
It would be good to have artwork that reflects the season – must remember to tell the people at Beverley hospital…..
She spoke of the same tool we’ve been using at Beverley community hospital where I’ve been involved in improving the environment.

At this point my brain said enough is enough and switched off. There were a few more speakers but we were in a strange dimly lit room and I had to sit on the front row which was very close to the speakers and very claustrophobic.

By 16.50 there was much shuffling in squeaky leather seats – people had had enough. It was an odd time for a conference 1-5.30 …..or maybe just not a good time for me…….
It was a strange afternoon with nuggets of brilliant information. Speakers seemed rushed and spoke very fast …..Maybe it was the dimly lit room or tightly packed chairs that made it uncomfortable – not sure. It was supposed to be targeted around Living well – so why did I not feel uplifted and positive at the end of the day……..?

Just realised why the room was unpleasant……..no windows…….I don’t like being in rooms with no windows………..

On my way home I also realised I don’t like travelling in the dark…..can’t see out of the windows….note to self – think before saying ‘yes’ to talking at events!!

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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.

6 thoughts on ““Medicine and Me – Living well with dementia”

      1. I’ve been on it a year Lisa. It’s not something you notice – it doesn’t make you better. It’s said to be able to stabilise or reduce the decline so unless you have a twin that’s not on it you have no way of knowing if it helps. But it does give you hope which can act as a placebo which can only be good😊

        Liked by 1 person

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