Dementia is not just a disease, it is a lived experience. The plaques and tangles strangling the brain cells are merely medical explanations for a set of symptoms that are difficult to comprehend for anyone.
Experiencing what it’s like to live with dementia as I did yesterday in a ’Virtual Dementia Tour experience’ has had an eyeopening effect on me, as I know it had for the Mayor of Waverley, Denise Le Gal, who took the tour with me at the excellent Cedar Court Care Home in Cranleigh.
I understood that life with dementia is confusing but I had no idea how debilitating, isolating, scary and disconcerting it is. The ten minute experience felt so much longer and was completely frustrating and bewildering.
Peter from training2care gave us inserts for our shoes, fitted us with gloves, glasses and headsets and ascertained our dominant hands. He then told us he would take us in individually and instruct us to complete 5 tasks, which would also be posted in the room; he turned my headset on and lead me in. With very limited vision, loud noises constantly ringing in my ears, pins and needles in my feet and my hand movement constricted I found it impossible to hear Peter’s instructions and I could neither find the tasks nor read them in the room. Turns out the written tasks were displayed as someone living with dementia heard them so I wouldn’t have understood what I was to do anyway.
After a siren sounded, making me jump out of my skin, Peter leaned in and told me to ‘find something useful to do’, I thought I might tidy the table but this was another task I wholly failed to complete in this disorientating environment. Then looming large before me he told me to find the matching sock, which he would take from me and hide again. I asked the Mayor if she had my other sock but she just took my sock from me; again I had failed and was left feeling completely useless.
As Peter tried to feed me, my poor vision and physical limitations made his approach feel quite threatening and I contemplated how I would feel if he had actually put real food that I couldn’t see in my mouth, instead of merely an empty spoon.
When our experience was over and we removed the glasses, headphones and gloves it was hard to believe it was the same room where we had just had this bewildering adventure. We were then invited to watch two of the Cedar Court staff undertake the same experience. The Mayor, Peter and Michael (the Activities Manager) sat and talked about our own thoughts as we watched them fail just as we had.
This experience has changed my whole outlook on dementia, I could burst into tears at the memory. It has made me determined to change conceptions of people caring for those living with dementia and how we look after people trying to make sense of a world where this dreadful disease makes it utterly bewildering and nonsensical.
I will go to the WeCare Dementia Group today with a new understanding and empathy. I hope we can bring this experience to more people within our community so they can see what it might be like to live with this terrible condition and we can empathise with those living with dementia and their carers.
We know it is possible to live well with dementia. This is largely dependent on the way we as a community interact and treat people based on better understanding, so those living with dementia and their carers feel included and enabled with the right level of support.