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28 March

Learning what it’s like to live with dementia

Virtual dementia tour

Dementia is the leading cause of death in the UK and affects an estimated 850,000 people. But what is it like to live with dementia? Thanks to an innovative interactive experience, staff at Mid Essex can find out.

The Virtual Dementia Tour is the only scientifically-proven insight that a person with a healthy brain can get into the difficulties faced by a person living with mid-stage Alzheimer’s. Monthly sessions are run at the hospital by falls clinical nurse specialist Carrie Tyler and quality and safety administrator Su Marie.

Carrie believes the tour has huge benefits and wants as many staff as possible to get involved: “They’ll be able to apply what they’ve learnt to everyday situations to help people with dementia and improve their wellbeing. The tour isn’t just for nurses. Porters, hostesses, therapists and admin staff would all learn a lot.”

We spoke to nurses Tim Clarke, Karolina Ostapczuk and Julie Watkins after they’d completed the tour.

The trio were given glasses, gloves and headphones to wear, and then asked to complete a series of basic tasks. But with their vision, hearing and sense of touch diminished, the nurses’ confidence was visibly shaken.

“I felt very uncomfortable,” said Karolina. “At the start I couldn’t see anything. Later on I could hear and see a little but the tasks were very hard because of the gloves. I felt very vulnerable.”

As soon as Julie walked in she put her hands to her head and took several seconds to move: “It was scary. All your senses are going into overdrive and I was in a state of confusion. It was the uncertainty. 

“Having someone talking to you but not being able to take it in or answer left me feeling stunned. Normally I’m very independent so it was hard to suddenly be reliant on other people. I felt stuck to the spot, not knowing what to do.”

“I knew I was being spoken to but it took time to tune in to what was being said,” added Tim. “And I was really conscious I had to concentrate my absolute hardest to do something as simple as tying a knot, but still doing it wrong. It was very disconcerting and I felt like there were many more people in the room than there were.”

Karolina, Julie and Tim all agreed the experience would benefit anyone who has contact with dementia patients.

“I think sometimes we don’t always realise how what we do could upset someone,” said Karolina. “I have a greater understanding of what it’s like to be in that position and I’ll know to have a gentler approach. It’s opened my eyes.” 

In the end of session debrief, Carrie discussed the common reactions of people having taken the tour: “People can look lost or be hesitant, and you’ll often see patients follow someone who looks like they know what they’re doing.

“People living with dementia can also have conditions like glaucoma, experience pins and needles in their feet, and be unable to block out background noise. This can lead them to become confused and stressed which releases cortisol and can have a very negative impact.

“Giving one clear instruction at a time is far better than giving a list, and we use reinforcement as this lessens anxiety and depression. People may also use sub-vocalisation – the sound of their own voice – as a comfort, or make negative statements.

“Some of the behaviour you may see from someone with dementia may look odd at first but can have completely reasonable and rational understandings. And as the group have experienced today, to the person doing the actions, what they’re doing can make perfect sense. ”

Do you want to take the tour? The next one is on 17 April in the MAU. Email traininganddevelopment@meht.nhs.uk to book your place.