Taking a virtual tour of dementia

Categories: Community Engagement.

An unsmiling supervisor orders us to place spiked insoles inside our shoes, before leading us out to a parked bus. With hard spikes digging into our feet, we shuffle slowly along. We climb on to the back of the bus, and an even sterner trainer gives us our instructions. During the tour, we must attempt to finish five simple tasks. We are told to put on oven mitts with the fingers sewn together. Gripping anything is difficult, so the trainer helps us put on a pair of glasses that reduce our vision to a series of blurred, dark brown smudges. Finally, she places a large pair of headphones over our ears, blasting us with a never-ending cacophony of indecipherable noises. I can no longer hear or see the trainer or any of the other participants. I feel a grip on my arm as the trainer leads me, hobbled, blind and deaf, through a door into a dark room filled with vague shapes and flashing lights. The next eight minutes are among the most disorienting I have ever experienced in my life.

Experiencing dementia

The Virtual Dementia Tour was created by P.K. Beville, a geriatric specialist and psychologist who aims to increase understanding of the physical and mental challenges facing those living with dementia. Observing the spiralling healthcare costs of treating the ever-increasing number of the world’s population diagnosed with dementia, Beville advocated that caregivers should be given more education about how to provide expert care. By its very nature, dementia makes communication between patient and carer extremely difficult, sometimes impossible. Beville sought to create a training tool that could enable carers, families and friends to walk in the shoes of people living with dementia, and enable low cost solutions that improve their day-to-day experiences.

The Virtual Dementia Tour showed me that these experiences can be nightmarish. Trapped in the dark room, I have no idea what the tasks I’m supposed to be completing are – the awful noise of the headphones blocks out any instruction. I fumble in the dark to feel anything that might give me an indication of what my surroundings actually are. Eventually, a trainer grabs my arm, leans in close to my ear and tells me to match the socks on the bed. I’m so relieved to have received and understood a snippet of human communication, it takes me a minute to process that I have yet to find the bed, let alone isolate something as specific as a sock. 

After what feels like hours, I finally bump into the bed. I grab something soft on the covers and try to work out what it is through my gloves, but it is quickly ripped out of my hands by an unseen person. I have no idea who or where they are, or why they’ve stopped me.  Punctuated by loud, frightening noises from my headphones, every time I get close to carrying out a task and situating myself, I am stopped, with no explanation or reassurance.  Eventually, I give up. It is easier just to shift on the spot, waiting for the whole thing to be over. 

Afterwards we are taken back outside and allowed to return to the reality we know. It’s an incredible relief. The trainers, who are now smiling and perfectly friendly, proceed to explain what happened and why. The impairment of our senses was designed to mimic what people with dementia  experience. The never-ending loop of noise in the headphones turns out to be every day noises: people talking, doors slamming, the usual bustle of life on a ward, all combined and amplified to make them unrecognisable. The spiked insoles and the gloves are meant to replicate the effects of peripheral neuropathy, which is common among dementia sufferers. It refers to nerve damage that impairs sensation, or causes pain.

We are informed that, as soon as we were led into the room, the trainer stood in front of us and read out our instructions in a loud, clear voice which none of us had heard. When they had leaned in close to one ear and touched our arms, however, we had all managed to hear and understand. The trainers’ stern manner, and the constant unexplained interruptions, were designed to make us experience what dementia patients often feel when carers are cross or abrupt with them. 

Understanding behaviours

Pain aside, the most powerful thing I felt during the tour was a sense of isolation that clearly affected me more than I realised at the time. One of the trainers told me that I had stuck close to another participant throughout, fearful of letting her outline disappear into the dark. I was totally unconscious of doing this, but it isn’t surprising. The tour is designed to ruthlessly uproot participants from any sense of comfort or safety. Ultimately, however, I had the comfort of knowing the session would be ending soon. The idea that such a tortuous experience could continue indefinitely is harrowing, and will stay with me for a long time.

The Virtual Dementia Tour is a powerful affirmation of the need for healthcare professionals to invest time into understanding the everyday lived experience of their patients.  Participants left the session having a new frame of reference to understand and explain the behaviours of dementia patients, and also received tips on what small changes they could make to improve patients’ daily experiences. The tour aims not only to improve the quality of care available, but to lessen the isolation and loneliness that has become such a defining aspect of diseases like dementia.   

If you would like further information, or would like to book a Virtual Dementia Tour at your hospice, contact Training2Care here