What is it like to live with dementia?
Giving carers a taste of what it's like to live with this devastating condition is the name of the game for a mobile unit touring the country this year. The 'Virtual Dementia Tour' is aimed at improving care standards by providing carers, both professional and family members alike, with an insight into the disorientating world inhabited by people living with dementia. And by all accounts it really works.
Writing for The Guardian, Juliet Rix explains more....
Anyone who has cared for someone with dementia will recognise many of the behaviours I have just exhibited: standing still in the middle of a room, knocking things over, failing to follow instructions, not knowing what to do with an ordinary object, cowering, sitting staring into space. So why was I behaving like this?
I was inside a dementia “Tardis”; the mobile virtual dementia tour (VDT) that simulates the world of someone with mid-stage dementia. This small truck, the first of its kind in the UK and only the third in the world, will be touring the country this year, giving carers – professional and family – an insight into the world of people with dementia. The experience is intended to improve the care they give, and by all accounts, it works.
Entering the anteroom of the Tardis, I am given uncomfortable insoles that mimic the pins and needles of peripheral neuropathy. I put on gloves that blunt sensation to my fingers and make me clumsy. My glasses are taken away (“people with dementia often forget them”) and instead I have goggles that block my peripheral vision, and headphones playing normal sounds that are too loud and too uniform to fully differentiate. And I am led through a door into a darkened room. This mix of sensory deprivation and sensory overload is very quickly disorienting and distressing. The tour only lasts eight minutes and, believe me, it is long enough.
In the subsequent debrief you are told how you behaved, reminded of what was said to you (some of which you will have missed or forgotten) and told a bit about how this all connects with dementia.
The VDT was invented by a US specialist in geriatric care, PK Beville, who founded not-for-profit organisation Second Wind to change the perception of ageing. The VDT is now in use – in non-mobile form – in 17 countries. Beville started working with elderly people 30 years ago and quickly became frustrated by what she saw as the “inappropriate use of psychoactive medication and unnecessary hospitalisation” of people with dementia. Not to mention the lack of support for often untrained carers who carry the burden of looking after people with this difficult condition.
" People with dementia are not aggressive or mentally ill; they are responding to their experience as you or I would." PK Beville
Beville wanted to change the way dementia patients were cared for by helping carers understand the reasons behind their behaviour. She says she tried interactive training, role play and videos but nothing was changing. So using her own extensive observations, interviews with people with dementia and their carers, and current scientific knowledge, she created the VDT.
A study involving 146 US workers caring for elderly people found that during the VDT most became anxious and were unable to complete simple tasks. Nearly three-quarters hummed, whistled or moaned, and 51% withdrew completely. Many found the experience so overwhelming that they behaved in ways they would normally consider completely inappropriate, says Alison Clarke of Training2Care, which operates the VDT in the UK. But it is worth it, she says, for the effect it has on people’s caring. “I had one 86-year-old woman whose husband had Alzheimer’s. She was very impatient with him. She kept saying, ‘I’ve told you that’, ‘don’t do that’. When she came out of the tour … she went over to her husband, kissed him 15 times and said, ‘I’m sorry’.”
A further US study looking at carers response to the VDT five to nine months after participation revealed they remembered it vividly and reported lasting effects on their caring – including increased empathy, sensitivity, patience and an awareness of practical things like keeping noise levels down.
April Dobson, head of dementia innovation for Abbeyfield, which runs more than 500 care homes in the UK and hundreds more worldwide, says the impact of the VDT on care is “massive”. “It makes carers realise how much their actions can influence the response and behaviour of people with dementia.”
The VDT truck will be training Abbeyfield staff and families of residents with dementia, and it is hoped others, such as firefighters, shopkeepers and members of the public. The tour costs £20, although if organisations get together to form a local hub for the truck to visit, some tours could be free. With 850,000 people diagnosed with dementia in the UK (44 million worldwide) there are few who would not benefit from understanding the condition better.
If society understood, says Beville, those with dementia wouldn’t need to be drugged and shut away. Their treatment, she believes, “is the human rights issue of our time”. If we think carefully about the individual, the environment and how we communicate, she insists, the lives of those living with dementia – and their carers – could be dramatically improved. The starting point, Beville says, is simple: “People with dementia are not aggressive or mentally ill; they are responding to their experience exactly as you or I would.”
As in fact – in the VDT – we do.
The Virtual Dementia Tour is bookable at training2care.co.uk or by calling 01376 573999
First published in The Guardian 26/01/16