Getting on board for insight into living with dementia

Swansea Bay mental health staff have been given a revealing insight into what life is really like for those living with dementia.

They took part in a training experience on board a virtual dementia tour bus, which simulates symptoms of the disease through the use of props and a series of tasks, when it visited Cefn Coed and Tonna hospitals.

Staff were asked to put on thick gloves and wear spiky insoles, dark glasses and headphones – to take away primary senses, distort their surroundings and simulate the physical symptoms of dementia.

Once they were inside the dark, cramped confines of the bus, guide Mick Bailey reeled off everyday tasks to complete, such as moving crockery or hanging up clothing.

All the while staff were distracted by flashing, disorientating disco lights, and continuous background noise piped through their headphones.

Pictured above, from left, Laura Griffiths, a physiotherapy technical instructor at Tonna Hospital, Callum James, a Community Psychiatric Nurse and student nurse Angharad Oliver.

“When I speak to delegates, I say I could spend six months telling them every single day how I feel, but it’s like the old saying, until you’ve walked a mile in my shoes, you don’t really understand,” said Mick.

“What we see in the bus, when people are immersed in it, is they behave like people with dementia so we are affecting their healthy brain.

“The equipment we use impacts on their senses and robs them of confidence. They become submissive; it’s amazing how in this environment you can lead an otherwise outgoing, confident person to a chair and they’ll just sit there quietly, having gone into their shell.

“The experience begins from the moment our delegates meet me. I go in with an attitude, I’m a bit rude and a bit arrogant. The reason why we do that is because if we’re negative, the people undertaking the experience will feed off that negativity.

“It’s about setting the stage. The idea was invented in the United States about 24 years ago. It really works and we get loads of positive feedback with people saying stuff like ‘I had no idea…’.

“For example, when you have dementia, you have an amplification of the sounds around you, in the sense you find it a lot harder to filter noise out.

“It’s the difference between a nice, quiet drink in a country pub and perhaps a trip to McDonald’s, where it’s much less relaxing and there’s a lot of noise and chaos.

“We live in the country pub world. They live in the noisy, takeaway world.

“That insight alone can completely alter the way you approach someone with dementia.”

Pictured right, the exterior of the Virtual Dementia Bus

Dementia, the name for a group of symptoms that commonly include problems with memory, thinking, problem solving, language and perception, now kills more people in the UK than heart disease or cancer.

It is caused by diseases which damage the brain by causing a loss of nerve cells – Alzheimer’s disease is the most common – and affects one in 20 over the age of 65 and one in five over the age of 80.

Among staff at Tonna Hospital who took part in the virtual dementia bus training were Laura Griffiths, a physiotherapy technical instructor, Callum James, a community psychiatric nurse, Savanna Cole, an occupational therapist, and student nurse Angharad Oliver.

Callum said: “It was a really unpleasant, disturbing experience. I had no idea whatsoever what to expect before going in to the bus.

“Things were so difficult to do but it also made me appreciate how hard it is for someone with dementia to understand instructions, to carry out daily tasks, which they have done for years and, all of a sudden, have become virtually impossible.

“Things are difficult to hold and handle, to see, to hear. It affects all your senses, not just your memory.”

The bus is one of 11 in use around the UK and has been developed by care training provider, Training 2 Care.

Savanna said: “I have a much better understanding after being in the bus, going through the experience with the kit on and then going through a debrief, which explained why we were wearing the items we were given and gave context to the experience.”

“I’ve been in one of the buses before, for a taster session in Birmingham, but the debrief we had after being in the bus on that occasion only lasted a few minutes.

“It was really good, but having a more in-depth debrief gave me a better understanding of how the experience relates to someone living with dementia. There are a lot of things I can take away from it and implement in my practice. 

“For example, with the glasses on, your field of vision is narrowed and your colour perception is altered by a filter, which simulates the deteriorating vision someone with dementia may experience.

“That makes it hard to differentiate colours. I was asked to pick up black glasses, but the ones I picked up and thought were black were actually red.

“In my role, I look at people's daily activities, and it's made me think of all the things I need to consider surrounding this.

“For example, if someone appears to have loss of appetite, I now know to consider that the colour of the plate might be a contributing factor and I might consider offering a blue or red alternative. 

“It gives you so much more empathy and understanding.”