What does it feel like to have dementia?
I’ve been invited to try a virtual tour that is said to be the most accurate representation of living with the mid-stages of the illness.
I’m with a group of five and we will be taking the test, two at a time.
We have no idea what we will be asked to do as all instruction is kept deliberately minimal to create unease.
I’m handed a pair of inserts for my shoes with uncomfortable, bumpy projections, to mimic the effects of peripheral neuropathy, with causes loss of sensation.
Thick gloves are next to help replicate a loss of brain function to carry out day-to-day tasks and glasses which block out most of your sight, to replicate eye conditions such as Macular Degeneration.
The tour will be led by senior lecturer in mental health Val Howatson and Bill McDonald, a lecturer in nursing and health care, who has decades of experience in geriatric nursing.
We are briefed before we go into the room next door, where the tour will take place.
There’s a bit of apprehension before you go in, so much so that I forget, almost immediately, what I’ve been told. (We were told we would be given five tasks and there would be a list on a table)
It’s dark in the room, made worse by the glasses, and there is loud ‘white noise’ coming out of the headphones I’ve been given. I feel a moment of panic and want to run back out. I’m slightly claustrophobic anyway and a bit short sighted.
There is a man in front of me who is giving me a list of instructions but I can’t hear a word of it.
Normally you would ask someone to repeat themselves but it feels pointless. I wander away not sure what I’m supposed to be doing but can discern that the room is set up like a kitchen.
Someone comes up to me and quite aggressively instructs me to, “Find something useful to do.’ I see an ironing board and start pressing a towel to steady my nerves.
Another voice in my ear tells me to find my belt. I feel for one under what looks like a big pile of clothes. “Is that your belt?” a voice says in my ear. It feels like an accusation and I drop it feeling slightly embarrassed.
I’m then told to find a white shirt and button it up. I put on two, both the wrong colour. “That’s a blue shirt,” a female voice scolds. I give up trying to button up the shirt. It’s simply impossible with the gloves. No one comes over to help.
It’s a careful line to tread, Bill says later. You don’t want someone with dementia to feel frustrated if they can’t perform a basic task but acting too quickly can rob them of independence and dignity.
There are obstacles on the floor, next to the table, which I forget about, almost every time I walk in that area. The white noise is interrupted by disconcerting loud noises, an ambulance siren, a loud thump. People with dementia find it hard to differentiate between different sounds.
Nothing can ever completely replicate the illness but I know exactly how the I felt during the tour. Panicky, vulnerable, disorientated, child-like, frustrated, lonely, resigned and tearful.
Bill later tells us that we could have put the lights on, no one told us not to but the disorientation of the experience has affected our rational brain.
He said: “There are other simulations about, but this is the only one that is evidence based.
“We have done this with hundreds of people and you see the same types of patterns repeated again and again. It’s based around feeling alone, feeling frightened, scared and confused.
“You get the list of instructions but as soon as you are in the room, that feeling of uncertainty doesn’t help us to remember.
“We read out the list of five instructions and for people who can hear it, they tend to remember the first thing and the last thing. If you give people with dementia a list of instructions, or complex questions. Do you want a cup of tea? Do you take sugar. If you’ve got dementia, it’s difficult to process that.” It’s far better, he says, to ask single questions.
“At some points, I get a wee bit short with people. The message about that is thinking how we can engage and communicate with people with dementia.
“Try and think about tone and volume.
“Nobody on the tour said, ‘No, I’m not doing that.’ Very few people even asked questions.
“The passivity of it is another aspect. We say, “That’s not your shirt’ but we don’t then give you something meaningful to do.
“If we are taking something away from someone with dementia, then it’s about saying, ‘let’s do something else.’
Watching the video back, I look utterly lost. It’s a strange and not very pleasant to see yourself so vulnerable.
My own parents are in their 70s, they don’t have dementia but I know I’ve lost my patience with them on occasion if things aren’t happening as quickly as I’d like and this exercise make me feel slightly ashamed.
Everyone should do this exercise, not only to get an better understand of dementia but to get a sense of how it feels to age.