FEATURE: Virtual Dementia Tour changed my perception of disease

Tina put herself in the shoes of someone living with dementia to get a better understanding of the disease.
Tina put herself in the shoes of someone living with dementia to get a better understanding of the disease.

Tina Clough, of Derbyshire-based Poppy-PR, recently underwent a personal crusade to find out more about a disease which affects 850,000 people in the UK alone.

Putting herself in the shoes of someone living with dementia, here she unveils why we all have a responsibility towards education about the life-changing illness:

Like many of us, the word dementia means very little to me. My personal experiences of this disease, which is expected to affect one in five of us at some point in our lives, have been extremely limited. That is until recently...

Last year I fell in love, I met my life partner, we had a whirlwind romance and we are getting married in May. It was then that my first experience with this horrific disease began.

His mum is living with dementia, and has had Alzheimer’s for many years. I admire his family, partly because they have thrown themselves into making adjustments to ensure that she is happy, healthy and cared for, often making sacrifices in their own lives to do so.

I came into my partner’s life like a bolt from the blue, ignorant about what this disease means on a day-to-day basis, how it affects families, causes guilt, upset and, in many cases, isolation for the individual.

Then a few weeks ago I received a call from our client Milford Care Group, which would change all of this. They invited me to attend a training session being held by Training 2 CARE, for carers from its six homes - Spencer Grove Care Home, Hazlegrove Care Home, Ashbourne Lodge, The Meadows Care Home, Ernehale Lodge and Milford House. As it transpired, this would give me a greater understanding and compassion for the disease.

On a cold wet Friday morning, I arrived at Spencer Grove Care Home in Belper, along with a cohort of carers all seeking to improve both the quality of care for those living with dementia, and their own personal level of understanding. Among the bouts of nervous laughter, we all sat in a room waiting to be called up in groups of three.

We boarded a van which boasted the title ‘The Virtual Dementia Tour’ in bold writing across the side and was met by a man who can only be described as sharp! After failing to introduce himself, barking orders at us and handing us some interesting garments to put on, I felt like I had enlisted in the army, never mind an educational experience!

I was told to put a large glove on my right hand, a smaller glove on my left hand, and some headphones over my ears. I was then handed some tunnel vision glasses to reduce my sight, and some insoles for my shoes, which were pure agony because I had failed to wear any socks.

We were led one at a time into a darkened room and the trainer shouted orders at us, many of which I couldn’t even hear because I had white noise pouring in from the headphones. I can honestly say that I felt disorientated, and very alone.

I am an independent woman, I run my own business, I always have it together, yet in this moment I wanted to hold on to someone, anyone and not let go. A huge sense of sadness began to creep over me. Is this what my partner’s mum feels like? I recognised some of my reactions in her.

Above the white noise which filled my ears, I was then given further orders by the trainer to ‘do something useful’. I began to feel frustrated. I couldn’t do anything useful, I couldn’t see a thing, I was unsteady on my feet, and I just wanted to sit on the floor with my head between my legs. I became determined to complete the experience despite feeling dizzy and helpless.

Flashing lights filled my eyes, and I felt sure that the van was moving underneath my feet. Every so often loud sirens or the slamming of doors could be heard over the white noise from the headphones, and it made me scream out loud more than once.

In our de-briefing we were asked by the trainer (Tony, who happened to be lovely!) what we originally thought of him. He explained that when someone without dementia is introduced to someone with the disease, we naturally put barriers in the way. We fail to introduce ourselves, we bark orders, thinking that this is the best was to behave.

Overall, this experience has changed my perception of the disease. I hope that this will enable me to have more compassion. I hope that this will work to develop my relationship with family members as they progress in this disease, and I thank the team at The Milford Care Group for giving me this once in a lifetime opportunity.

I had to endure ten minutes of this experience and admittedly I could not cope. For an estimated 850,000 currently living with dementia in the UK today, they cannot simply say they wish the experience to stop, or that they wish to get out of that darkened room.

These people for me show incredible bravery. As a society we should be making more of these virtual experiences to aid understanding. Who knows, in the future the shoe could be on the other foot.