Greater system change is needed for dementia patients and this must start with education

A guest blog post by Professor June Andrews, Director of Dementia Services Development Centre at the University of Stirling

The Dementia Services Development Centre at the University of Stirling has received a grant to build a “virtual dementia friendly acute hospital” from the Robert Bosch Foundation, to help guide the design of hospitals so that they are kinder places for frail elderly patients, including those with dementia.  We are also running seminars for hospitals all over Germany to learn what we know from research evidence and international consensus on best practice.

When I trained to be a nurse in early nineteen eighties, I saw some rather startling things in hospital.  They make me really sad now, but at the time I was just puzzled.  In my first clinical placement, about three weeks into my training, I was sent to a women’s ward in a Victorian psychiatric hospital where all the patients slept in a big dormitory, with nearly no privacy.  Even the bathroom had two baths with a flimsy curtain between so staff could supervise two patients bathing simultaneously.  Apparently the curtain was a recent improvement. In my first week I was shown how to rip a vest up the back, to create two tails of fabric to wrap around the bolts under a toilet seat, to restrain a patient on the pan so that I could “toilet” patients simultaneously in adjoining WCs.  This is why I needed my own scissors, because you couldn’t rip those thick cotton garments with brute force.  When I expressed alarm to my older colleagues they laughed and said they saw greater horrors in their early days.  The communal washing facilities for patients were no worse than a boarding school.  “As if any of us or these patients has ever been to a boarding school?” I pondered.

Things were going to have to get better, particularly for older people who were frail or confused. When people said it was worse “in the old days” I thought they were implying that I should be impressed rather than concerned about what I was seeing.  This was going to be my life’s work.

In 1985 in “Hospitals in Trouble” by JP Martin, I read about the damage and harm that hospitals did to people, and how wicked systems and practices could be brought to a halt.  I needed to see that because I witnessed patients with limited capacity being teased and frightened and laughed at and I just did not have the ability to stop it. I kept thinking that if I got promotion I’d have more power, but to get promotion I had to knuckle under, like everyone else.  It is well known that nurses often fail to complain about or report bad practice the first few times they see it.  They are over concerned about the embarrassment of turning out to be wrong.  The social pressure to fit in is huge, and after you have seen something a few times, however, alarming it was at first, you get used to it.

But I really did believe that things would improve progressively.  However, I now believe that my mental model of improvement was wrong.  I thought that improvement in care was like dragging a weight up a set of steps…each time you made an improvement like private bathrooms, or laws against the use of restraint you got a bit closer to the ideal and things got a bit better for frail and vulnerable patients.

I now know it is not like that.  Harmful practice comes to light and if policed properly it disappears…but something new comes up in its place.  For each step forward there is a step back. So now we don’t have communal bathrooms, but the pace of routine in hospitals has become so rapid, that there is scarcely time to use the nice private bathroom.  There may be a convenient en suite toilet but it is designed in such a way that it is confusing for the person to use alone and the staff don’t understand their need. The possibility of sliding back into inhuman practices is ever present.  As mistreatment had to be resisted in the last century, it has to be resisted now, and this always will be the case.

So although I place great faith in the change that will come about as a result of the Dementia Services Development Centre making dementia friendly hospital designs free on line, I know that greater system change is needed.  It must start with staff education about dementia and delirium which are extremely common in hospitals, and frequently missed by staff.  Dementia “awareness” sessions are not enough to provide staff with the skills they need to make things better.  And while we are making these improvements, every family and carer must be given the information that they need so that they can challenge the service providers.

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