“Be Bolder Mr Burstow”

On the very same day that I was writing one of my series of blogs on dementia and suggesting more money spent on the disease – a remarkable coincidence.  I surfed the net for news of dementia and low and behold I found a press release from the DoH announcing £10m for memory clinics.

Great minds think alike?

Is the Government reading my blog?

Nah! That can’t be true and in any case £10m won’t solve the problem.  It is money to be spread across PCT’s all over the country which means half of it will be lost in administration.  What is more, I thought PCT’s were being abolished.

Be bold! be bold!

Get connected with the scale of the problem:-

  • Probably nearly 1m people with dementia
  • 100,000’s mis-diagnosed with wrong drugs (see my blog “Left in the Dark” dated 22 September 2011)
  • 100,000’s with no diagnosis at all
  • 100,000’s carers left in desperation with no support at all
  • £10m won’t even scratch the surface of the problem

30 years ago, I first started working with dementia residents at Newfield House, Coventry; it was scary.  I had not come close to a lot of residents in one place and certainly not in the later stages of dementia.  Lost in a dark world, endlessly wandering, repeating the same questions over and over, spouses locked in an everyday embrace of despair.

Staff struggling to cope with the side effects – difficulties of incontinence and over medication.  You have to be bold and committed to do the job, fortunately our staff were.

As time went on I learned to be less scared.  Some things could be done to improve the care.  Reduce medication, especially sedation.  Treat people as individuals – find out who they were in the past and talk to them on their own terms.  Give them positive things to do.  It was tough.  There was no quick fix.  We were blessed with some great staff with endless patience.

Years later we took our first residents on an outward bound course (see my blog “Swimming with Sharks” – Southern Cross 4 dated 30 May 2011)  We had taken physically frail residents for a long time, and seen the confidence building the experience had given residents.  We only did it with dementia residents at the insistence of my dementia home staff.  I wasn’t bold enough, but when we took the first step, what a revelation.  The residents could walk and talk and eat like we had never seen before.  But they could also climb and abseil and ride and canoe and sail.  It took a lot of encouragement, one to one support and skilled coaching.  It was hopelessly expensive but it was worth every penny to see people brought back to life again for a while.

The revelation was that there was a way forward and it didn’t require drugs or medication, just common sense and individual and personalised attention.

Roll the story several years on and ExtraCare Charitable Trust was emboldened to underwrite three quarters of a million pounds on a research study called The Enriched Opportunities Programme.  The key to this work was the role of a “locksmith” whose job it was to unlock the muddled up mind of demented residents by developing individualised activity programmes for residents.  Our bold action was repaid by charities who, in the end, fully covered the cost of the research by Bradford University.

The problem is certainly not solved but there is a way forward.  It needs continued bold action to challenge the way things are currently done.

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1 Response to “Be Bolder Mr Burstow”

  1. great to free the body and the mind to attain those dreams one had of yore. Another peoples story, just a little consideration by a few with the many helpers goes a long way. Let us all dream, while macduff steers a staight and steady course. Oh Hail to Macduff!!!

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