Sight loss, hearing loss, agitation and frustration - you can sense what living with dementia is like in the Virtual Dementia Tour. It could help architects to create appropriate designs
What: Virtual Dementia Tour
Where: Mobile unit touring the UK
Within a few minutes, I feel like giving up, just sitting out the rest of the experience no matter how long it takes. I’m in the back of a van in the car park of a specialist nursing home for patients with dementia testing the new mobile Virtual Dementia Tour (VDT), an interactive, immersive experience touring the UK for the first time that uses props to simulate what it is like to live with mid-level dementia.
But I’m not allowed to sit down. I’m told to sort out the socks on the bed by someone I can barely make out through the dark and the googles I’m wearing – these simulate loss of vision from macular degeneration and damage to peripheral vision. I can’t even see the bed. I can’t remember whether it was a man or a woman. I bend down to try to get a better view of the objects in the room and pat a few things while unconsciously subvocalising. Eventually I find some socks, but trying to make them match is impossible. Alongside the poor vision, gloves numb feeling in my hands, while my mind is confused by noises from the headphones and green and red lights moving across the room. My grip has gone, along with perception of distance, time and space, and I am bamboozled by periodic blasts of noise over the chatter in my ears.
During the eight-minute experience I feel defeated, getting increasingly agitated and angry at how difficult everything has become. I feel unable to do anything – unable to hear, feel anything, see and unravel what to do about the pens stuck in the water jug. Abstract tasks are beyond me. I sense myself slowed down and shuffling around the black mat on the floor unsure of myself and what it is.
‘You could have done anything in that room,’ says the VDT’s American geriatrics specialist inventor PK Beville, of the mobile which is set up as a studio flat inside. ‘You could have switched on the lights, or opened the curtains. But no one ever does. Of the nearly two million people who have experienced the VDT worldwide, I have seen five people do that.’
The only one of its kind in the UK, and launched in January by Training 2 Care with The Abbeyfield Society, the simulator gives those on board the chance to experience first-hand how people living with moderate dementia see and interact with everyday spaces.
The tour was originally designed to help carers, nurses and healthcare professionals understand the condition and revolutionise care. The experience is incredibly spatial and demonstrates how much knowledge we are missing.
‘The VDT is intended to increase awareness, help people identify with dementia and, most of all, humanise people with dementia so we don’t keep it at a distance and view it with fear,’ explains Beville.
In the second part of the VDT, participants stand in the room watching the next pair go through. With my mental capacities back intact, in the quiet again, a host of things make sense. The participants, changed by the VDT’s few simple props – gloves, glasses, headphones, shoe insoles and two instructors – are demonstrating all the key behavioural characteristics in response to everyday stimuli. It’s unnervingly convincing. As a tool for architects designing hospitals, lifetime homes, nursing and care centres, eight minutes in the VDT would be gamechanging and alter the focus completely. ‘Care homes,’ explains Beville, ‘are often designed to look pleasing to the family and are not particularly designed well for the residents.’
Goggles: Replicate the reduced peripheral vision and macular degeneration in the middle vision associated with damage to the occipital lobe, so people can’t discriminate visual stimuli.
Headphones: Replicate noise in the brain, difficulty in hearing and the startled response that occurs when the reticular activating system is damaged. Then it responds to everything, causing people to be distracted from trains of thought.
Gloves: Replicates the inability to feel things normally as a result of temporal lobe damage. People with dementia may be able to see an object but not manipulate it effectively.
Insoles: Replicate peripheral neuropathy (pins and needles) in the feet associated with ageing and being in pain but being unable to do something about it.
Lights: Replicates visual hallucinations associated with some dementias, caused by an inability to correctly integrate brain processing and vision. For example, people see things that are not there or moving things in food, called ‘flashes’ and ‘floaters’.
Interview with PK Beville on designing for dementia
Book your own Virtual Dementia Tour here