#26 A Walk Through Dementia

Written by Shelle

4 April 2022

The Alzheimer’s Show happens once a year. This year, it was 25th and 26th March at The Business Design Centre in Islington. Throughout my challenges, I’ve been working with the fundraising and communications team at Alzheimer’s Research UK head office to brainstorm ideas, provide structure to my efforts and promote the cause.

They’ve also been filling my wardrobe with bright orange clothing for my various challenge needs, but that’s another story hahaha!

They invited me to attend the show and experience a virtual reality simulation that gives people an idea of what it might be like to live with dementia.

The experience is delivered through a headset, powered by an Android phone, and it takes the user through three scenarios – walking down the street, in the supermarket, and making cups of tea at home.

It turned out that I’d seen the videos previously, but only in 2D. They had far greater impact when experienced in immersive 3D.

The videos are presented as though the user is the person – a lady – with dementia. You’re looking through her eyes and you can hear her thoughts. Several things struck me, and in fact struck home.

  • The walking down the street video contains a scene where the lady is heading back home with her son Joe. As she approaches her house, she gets very anxious at the prospect of having to walk up the steps to her front door. Her vision and spatial awareness are affected so the steps appear to move and are blurry and at odd angles.
  • In the supermarket, the lady gets flustered at the till when trying to count out the correct money. She’s lost the ability to distinguish one coin from the next, and can’t add up the right cash to cover the bill.
  • In the kitchen at home, the lady is trying to make teas for her daughter and two other guests. She’s confused over who wants milk and how many sugars, etc, which causes her to get quite anxious.

I witnessed many behaviours in my Mum over the years of her deterioration with dementia, and I was reminded about certain specific events while immersed in this virtual reality experience.

The steps

In the summer of 2019, I watched in horror as Mum quite literally forgot how to walk. Over the course of a few months, her mobility reduced and reduced – but this wasn’t a physical thing; this was a deterioration in the signals from the brain to her legs. It was also an issue with spatial awareness due to visual distortion and loss of perspective.

She had live-in carers at this point, and they would take her for a short walk every day to keep her moving. There were three steps up to the front door of her house, and I will never forget her standing at the top of the steps one day with me in front of her holding both hands, and the carer at the side of her holding her waist. She could not even step over the threshold, let alone attempt to walk down the three steps she’d negotiated without a second thought for twenty years, because she was absolutely terrified.

Of course, we reassured her that she didn’t have to do anything she was so scared of, and we all went back inside, but she never set foot outside the house again unless down a ramp in a wheelchair.

Watching the ‘Walk Through Dementia’, I can imagine Mum saw the steps the same way as the lady in the video did…

Money

Money had been a problem for a while. Mum would hand over £1.50 at the till for a bill that was over a tenner. It was like she was paying with foreign money and had no idea what each coin was worth.

She also lost all perspective when it came to value. She was very good at pretending, though, so she’d make comments about the cost of things that would sound plausible until you realised they weren’t founded in fact. One of the things dementia sufferers do very well is cover up their limitations. It’s only when you know someone really well that you can spot the cover ups!

A simple cuppa

Making a cup of tea… Oh my goodness, where do I begin with this one? Interestingly, the social services occupational health team use the process of making a cup of tea to measure the severity of someone’s symptoms. There are many many steps involved with making a cuppa, most of which you and I would just do on autopilot, but the diseased brain often shows its true colours here, and causes problems at every stage.

Overfilled kettles, kettles boiled empty, spilt water causing electrics to trip, over-poured cups, milk poured on the counter top instead of in the cup, forgotten tea bags, sugar tipped everywhere but the cup, the list goes on…

The 3D experience only seemed to show the confusion over remembering everyone’s different requirements for milk and sugar. If I’m honest, I think they missed an opportunity to show some other challenges there, but it was still impactful.

More patience

Overall, I’d say my experience of the ‘Walk Through Dementia’ was effective. I can see how these three videos together would be very informative to someone supporting a loved one with dementia, especially when they’re learning about the disease, perhaps before it advances too much. And I think watching such videos should be made a compulsory part of carer training to give a better understanding of how their clients experience the world. I’ve witnessed some very impatient carers – and family/friends – trying to handle Mum’s behaviours. Perhaps these videos would help to encourage more patience.

On that note, there’s a very good video produced by The Alzheimer’s Society that I watched numerous times when trying to understand how to better support Mum. Please take two mins to watch it now: https://youtu.be/06xKUdsqjug

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