Truth, lies and deception

 

I remember when I was ten I loved creating roads and playing with matchbox cars and lorries.

Oh those wonderful 1950s lorries. Big bulging fronts, and tipping bodies.

We had a big road layout mat on the floor. 

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My own children did just the same, though not with matchbox toys. Brio, I think. And Duplo. And Corgi model trucks. Eddie Stobart.

We love playing pretend when we’re kids. It’s escapism at its simplest.

The Lone Ranger and Tonto (no longer’), US Cavalry…these were straight from TV and films.

Play develops imagination and confidence. Play builds personality and empathy, and allows kids to try things out, make mistakes, learn who they are.

A bit older, I loved steam train journeys, except when travelling to Hogwarts several times a year.

Dad took me up the Snowdon railway to the summit. Modern films from those trains still evoke vivid memories from that time.

Before Hogwarts I caught the bus from the end of our road into Birmingham, with a two mile walk the other end. And return of course.

I can remember the smog of the early 60s, so thick you couldn’t see three feet. I had to sleep over at school one night.

These are vivid, important memories still. And I think about them more as I get older.

But they are no longer present reality for me.

Incidentally, these are the nice memories. I have far more others, horrid memories, which I do not want to think about, but which my dreaming brings up night after night.

Now, let’s move on to present day dementia care.

(Guess where this is going?)

There is a growing interest in creating environments that are good for people living with dementia. 

Dementia Friendly Environments. 

Kings Fund checklist.

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And lots more now.

That’s one thing. Removing obstacles, inappropriate flooring, curtains and walls, orientation clocks where you can see them. Low light and noise at night. Bright in the day.

It’s happening, slowly.

But then someone thought it would be good to reminisce in a mock train carriage. Or a bus stop. Or a pub or cafe. Or shops.

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In a hospital?

In a care home?

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How can a railway carriage painted, papered, upholstered into a care home be realistic? And in the same place every day. With the same view out of the ‘window’. And no station?

This is like children playing trains games, with uniforms, and tents printed to look like a station.

This is not treating adults as adults. Respectfully.

If they have advanced dementia they probably will not be able to process their surroundings and how the hell they came to be in a train. Or at a bus stop. Or in a shop they don’t recognise.

It is pretending. It is fooling them. It’s pulling the wool.

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If they haven’t got advanced dementia they will know they are being fooled. Might be fun once, but every day?

Why not create a real cafe on a ward, or in a care home? It’s been done. Or a nice comfy sitting area.

What about a restaurant in a care home which is like a real one? With food to match.

Give people what they can have in their community. Reality.

Reminiscence is fine and useful. Music often hits the hidden spot.

But let’s make sure the memories and music are memorable for that person. Music for Life, from life.

Old fashioned kitchens or sitting rooms can certainly evoke happy memories…and nasty ones, note. But let’s make them real sitting rooms and kitchens, where people can cook, eat, drink, sit, relax, chat.

Artificial bus stops where they have no right to be? Well ain’t that confusin’?

Railway carriage in the middle of your home? Nightmare.

I get told that people living with dementia like these things. They enjoy having a saunter down a path lined with pretend shops, with plastic cuts of meat and bread loaves.

So let’s just test that one.

If you ask someone who has cognitive impairment, often severe in care homes and hospitals, do you enjoy this? What are they likely to say?

Either they will understand and smile, or they will not understand and smile. Especially if they know the person asking. If they cannot answer they probably cannot interpret their surroundings, except as being different from what they might remember.

Ask the people earlier. Before they lose cognition. Like at my stage. Or further on.

Do we want to be in our home with a railway carriage? Or in a hospital, confused, in pain, disorientated, and find a bus stop near the bed on the ward? 

Someone with more advanced dementia would probably try to get to the bus stop to catch the bus home. Try convincing them it is not real! That’s a recipe for more “ challenging” behaviour.

The trouble is, it seems like a great idea, a logical extension of reminiscence. To the health care professional, used to knowing answers and knowing better than the patient, it makes good sense.

Why not? Anything to help distract patients and make them happy. Make life easier. 

And happy patients mean happier staff, and shorter stays?

And remember, if patients ‘wander’ to the bus stop, anyone around will know…this is a person who cannot work out that it’s fake. Ah, poor thing. Let’s ignore them. At least they aren’t causing trouble.

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Well get this.

Ask us what we want while we can tell you.

Ask us how we want our hospitals and care homes (our actual homes) to look and feel?

Ask us what matters to us.

And, for God’s sake, train your staff so they understand dementia, validation, taking time.

Offer a positive and appropriate response to people with dementia.

Get the basic environment right.

And, yes, by all means, put up some lovely big pictures of nice vies and places. Everyone will benefit.

But don’t lie to us, deceive us and confuse us. 

It’s not very ethical, is it?

….

Have a look at this interesting article on this subject.

https://link.springer.com/article/10.1186/s13584-019-0301-0