Kentish Gazette Canterbury & District
Experience has opened up my eyes
Cowering in the back of a van, clad in safety gear with only the sound of pretty much everything you can imagine for company.
It’s the loneliest and most humiliating experience and certainly is not how I expected to be spending my Friday afternoon.
I hadn’t been kidnapped, I wasn’t even letting my hair down at the end of the week with some casual SAS training. Instead I was in the process of learning what it might be like to have dementia.
Dementia is now the leading cause of death in the UK, with about 850,000 people currently living with the condition and one in three people born today likely to develop it. Worse still, it’s incurable.
In short, it is a massive and very horrible issue yet one which many people, including me, are not fully aware of.
Until Friday my perception of dementia was that it’s probably the nastiest thing that can happen to a person; a very simple yet bleak outlook yet one that was reinforced by much of what I learned during The Virtual Dementia Tour.
As a particularly stern man called Tony led me into the simulator, I was beginning to feel like a Guantanamo Bay inmate, wearing oversized gloves, sunglasses, headphones and spiked insoles. What followed was an excruciatingly long eight minutes and something so far removed from anything I’d ever experienced it was impossible to imagine anyone living like it.
Although full details of what happened inside can’t be revealed to preserve the experience for future participants, I can tell you that after we were guided out of the van, a now upbeat Tony explained how every piece of equipment had a purpose and how every detail of what had happened had been extensively researched.
The white noise broadcast through the headsets, for example, had been fine-tuned for four years by tour creator and dementia specialist PK Beville until 72 of 75 sufferers had confirmed it was exactly what they hear, even while asleep.
For fellow participants Jade Elliott and Tracey Gammon, from housing association Orbit Homes, the whole experience was upsetting and uncomfortable and made even the simplest of tasks seem like scaling Everest.
Jade said: “I did not know it would feel so isolating.”
Tracey added: “I’ve had family members with dementia and it’s sad to think I might not have treated them right. My husband has Parkinson’s and gets very frustrated and after that I sort of know why.”
Tony went on to quash a few misconceptions. The age the “old person’s disease” is picked up is now between 45 and 50 and it’s falling; last year a six-year-old was diagnosed.
He hopes if we take away anything it’s that people living with dementia are not purposely being difficult when they refuse to do something or shout and scream but rather that their brain is telling them to act that way. It’s a sobering end to a particularly sombre yet eye-opening day.