Dementia: A Must Read

The following article is reproduced with the kind permission of the author Roy Lilley

Image result for Roy Lilley Picturethe Editor of

‘Ten elderly people with dementia live, in a care home, supported, but as independently as possible.
To provide meaningful day-times, they take part in daily chores and contribute to light housework and preparing meals, under supervision.
Two residents have taken on the responsibility for opening and closing the curtains, night and morning.
One morning it all goes wrong; whilst opening the curtains a resident falls and breaks a hip.  This is reported as a serious untoward incident, the regulators are informed, as are the relatives.  The press get hold of it and the roof comes in.  The whole care model is under threat.
The resident’s participation in their care model comes to an end.
Had the incident been thoroughly investigated, it would have been discovered there was a leak from a radiator which meant the client slipped on a puddle of water.
The rules have now changed, the lives of the residents less interesting because everyone is risk averse.  Managers are thinking about their careers.  Now it’s all about the rules.
Let me ask you some questions…
  • Can you name five rules, in play, where you work?
  • What is the purpose of the rules?
  • What rules would you delete and change?
  • If you could invent three new rules, what would they be?
  • Do you think rules should be made in agreement with the client; if they want to take a risk they should be allowed to do it?
Think about the dignity of risk.  In our lives we compute the risks and decide; we cross the road before the little green man appears…
Now think about a lady with dementia.  She screams.  She screams and screams and screams.  The staff can’t stand it and the other residents complain.  So, they lock her in a room until she stops.
This is called negative behaviour.  A resident with limited communication resources reacts in the only way they can.  They either get violent, withdrawn, or scream.  She has to scream to make a point.
The question is; what point?
More questions:
  • Have you even demanded attention in a negative way?  What was the response?
  • Statement; ‘If a client cries out for attention, it says a lot about you’… discuss.
  • How do you find out the cause of negative attention?
  • What do you think of the statement; ‘if only she didn’t have become a client…’
These are not my questions.  I’ve pinched them from a book by Geert Betting,˜Moving on and Sending Still“.
Fundamentally a book about caring for difficult people in a care home setting, LD and dementia clients but it is so much more…
By accident the book explores the psyche of care and the people we care for.  It asks tough questions and made me think.  The signals we give to the outside world and how we misinterpret them… to our cost.

What group of patients do you work with?

  • What are the similarities among them?
  • Can you, clearly, describe the work you do, to friends and family.
  • Have a few people around you and ask them to write five key words about the work you do.  Ask everyone what they’ve written… what are the similarities?  What do you notice?
  • Do you sometimes say, ‘I don’t have time’… could you have made a different decision?
This is a very good book and read with an open mind can be applied to wherever you work in the care system, regardless of what you do.  Do that and it comes a great book.
Working under pressure, working with scarce resources, working and managing at the very edge…
…this is a clever book designed to make us reflect and is a must read’.


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