Inside the terrifying world of dementia
Inside the terrifying world of dementia
The lady at the chiller cabinet moved away from me with a tut of disgust as I shuffled past a display of drinks and almost sent them flying.
The space where she had been standing was a swirling blur and the edges of shelves moved towards me menacingly as I battled to buy a shopping list of six everyday items.
Every step was laced with danger. Babbling noises raged in my head, dislocating my senses, and a friendly corner shop became a hostile environment as I was immersed in an experiment to sample life with dementia.
Only 10 minutes into the task I was confused, vulnerable and isolated, some of the emotions almost one million sufferers and their families encounter every day.
I had three of the items but couldn’t dredge the others from my memory. My tenacity dissolved, replaced by anxiety and exhaustion.
The street, the shop, the people were part of an alien landscape that corroded my confidence. All I craved was the safety of home.
“Can you imagine dealing with that every day? How reluctant would you be to go out of your own house?” says Pam Stopforth, a trainer with the Virtual Dementia Journey, an award-winning training tool.
“This gives you a flavour of how simple tasks become mountains to climb.
“People lose patience with dementia sufferers as it is difficult to understand what they’re going through. The number of victims is growing as the population ages so it is crucial for loved ones and carers to be aware of what they go through so they can help.”
The Journey has been developed by Liverpool-based charity Personal Service Society and is modelled on the experiences of sufferers with early onset dementia who are still able to describe their feelings, what happens to sights and sounds and how they react to other members of the public.
“Dementia is different for the individual but research shows this simulates pressures that are a part of the illness,” added Pam. “It is a tough experience and can’t be attempted without qualified trainers present.”
This ‘sensitivity training’ has helped hundreds of people understand dementia and forms part of a project called Isolation Week, which took place last week. Volunteers were confined to their homes to grasp the problems faced by the UK’s growing elderly population.
The scheme, organised by Friends of the Elderly, will provide vital research to deal with issues faced by many older people.
My dementia came as a result of wearing vision-impairing glasses, tight scuba divers’ gloves to restrict movement, blocks in my shoes to offset balance and a set of earphones that gave off disturbing sounds.
It felt, at first, like a gameshow challenge – It’s A Knockout meets Push the Button. The laughter soon died.
The first task was to butter a slice of bread and to fill a glass with water.
I knew where the butter was but suddenly the fridge and washing machine looked identical. I guessed and got lucky.
I gently placed the tub on the work surface but missed by six inches as my fogged spatial awareness careered into chaos. A drawer, a knife, where to find them?
Starting to panic as shapes of cupboards raced in and out of view, I took a dirty one from the sink and buttered the bread with laboured concentration.
I was asked to go into a different room and put the bread down, set the table and sort some clothes out. With the pressures of new tasks fresh in my mind, the bread was discarded on top of a plate of croissants.
Pam and fellow trainer Carolyn Goble then took items off me as soon as I ‘folded’ them to simulate how a poorly-trained carer may react to someone who placed cutlery upside down and put clothes in a creased jumble.
Even though I knew it was a test, my resolve and patience quickly frayed. Pam and Carolyn became the enemy.
They may have been trying to help me get it right or even do the job for me but it seemed like they were indulging in some form of sadistic torture.
I wanted to throw the clothes at them, sweep the cutlery off the table and shout at them.
“Sometimes people do get frustrated and lash out and we’ve had to duck a few times,” said Carolyn. “You buttered the bread quite well but you took a knife from the sink, which you wouldn’t normally do. And would you normally place buttered bread on top of a plate of croissants?
“These are the sorts of actions people find extremely frustrating in dementia sufferers.”
My senses were swimming and a 10-minute break was needed before I tackled the stairs and then got out into the big, bad world.
With helpers either side of me, I walked down a relatively quiet street and it felt like I was being driven round an F1 track by Lewis Hamilton.
A gap between a lamp post and a billboard looked wafer-thin and I flinched as all three of us got through with feet to spare.
Carolyn whispered the six items I needed but the noise through the earphones made it difficult to keep them at the front of my mind.
The lights of the spacious corner shop diffused and I couldn’t tell if the staff were smiling or snarling.
A table of rustic bread rushed across the floor to block my way down an aisle. I had to feel my way round its edges.
The shopping basket felt as large as a JCB bucket in my hand yet it was still a struggle to squeeze any items in it.
Claustrophobia assaulted me as I went down the aisles desperately trying to focus on the moving mess of images on tins and packets.
I got teabags, almost went for tinned tomatoes instead of tomato soup and toilet roll after repeatedly missing it.
But the final three items were a mystery. I put in baked beans and a packet of biscuits simply out of exasperation. I went for the brightest colour pack of bread without thinking about its type or sell-by date. By luck it was the fourth item.
It felt like my powers of sight, hearing and comprehension were being suffocated. I could breathe normally but felt myself gasping for breath. Beads of sweat were forming even though I’d covered less than 50 yards around the shop at a snail’s pace.
“What did you need, what did you come in for?” were questions from Carolyn and Pam, like accusations stabbing at my incompetence.
It was all getting too much for me and after one final lunge for a random item, I sighed: “Can we stop now? I’ve had enough.”
Dementia had defeated me, leaving me temporarily broken and distressed.
I was disappointed and embarrassed by my performance; humble and fragile from the failure.
Dementia is not about being doddery and just slightly confused. It certainly isn’t a fun experience when you forget how to tackle the essentials. And it isn’t endearing to pair white with blue socks and to try to thread a belt through a shirt collar.
There is no dignity in developing the co-ordination of a stumbling drunk but, for almost a million people, there is no escape for these and other debilitating feelings.
A brief taste of dementia revealed to me how much we need to learn about the disease and how much we need to help those with it.
