Anne:

Having heard about other people’s experiences of the Dementia Bus, I made sure I put my name down for one of the brief sessions. I had no idea what I was about to experience.

From the minute you are taken in, you had your most basic senses- touch, sight, hearing, extremely impaired by various methods. You are then led into a room where there is limited light and what light there is, is disorientating. I was asked to complete a variety of tasks, which was the first problem, as I heard nothing but static, people laughing, shouting, other noises I couldn’t make out.

So I thought, the best thing I should do is wander about trying to feel what was around me; this is the point where every step was painful, as I had to put something in my shoes which replicated how people living with dementia experience sensation in the feet. I found it impossible to be able to make out what I was touching, as my vision was so badly affected, and whatever I seemed to pick up, was quickly removed from my grasp. Every so often a door would slam shut, or a siren or doorbell would go off, and I would jump out of my skin.

Suddenly someone gently touched my arm, and asked me to find something useful to do, easier said than done. I eventually found what felt like plates, so I started to stack them, only for them to be removed from my grasp. I was then asked to find the black glasses. Ah! I remembered I had found a pair earlier on at the start, so I shuffled my way back to where I thought I had felt them. Problem. I can’t distinguish which glasses are black. So I proceed to grab hold of every pair I could feel. And yes, you’ve guessed it, they were then grabbed out of my grasp.

The whole experience left me completely disorientated, confused, frustrated, and sick. And my experience lasted just 10 minutes. Those who live with this debilitating disease, can’t just chose to stop the experience, they have this 24/7 with no respite.

I have worked for many years in the care sector, and with people with dementia, and all I can say is, this experience would have been so, so valuable to me as I would have fully understood and empathised even better as to what was happening to these people, and be able to try and reduce their anxieties and frustrations.

Most important lesson of the experience, never approach someone from the side. Touch their arm gently before addressing them. And never, ever snatch something away from a person. If it isn’t dangerous to them or someone else’s, allow them to hold it, if it needs to be removed, then gentle replace the item with something more appropriate and safer.

Julia:

My feelings on coming out of the virtual dementia experience ……… you know that feeling when you go on a big dipper, stomach churning, wobbly legs…….???

I did the virtual dementia tour on Wednesday. I had some trepidation about it as I had read up on it before hand. I was definitely in two minds. However, one of the trainers came up to me and said “You’re up next”. With no reasonable excuses I had to go. You don glasses that replicate macular degeneration, gloves which take away the sensitivity of your fingertips, plastic insoles for your shoes with small sharp needles which immediately reduced my step to a shuffle and headphones which sounded like a number of people jabbering away around me. Noise that I couldn’t shut out and without the ability to decipher the conversations. It was frightening. I was very much out of my comfort zone.

The trainer gave me 4 commands, “fold the washing”, “pair up the socks” and “lay a table for 4 people” and I couldn’t make out the other due to this jabbering in my ears. As I hadn’t seen the internal layout of the room before hand and there was flashing lights I couldn’t see very well at all so could not locate the socks. I wandered round the room trying to identify and pick up things with elephant hands, I couldn’t identify anything until I located the plates and table. I started to put out the plates. Then…. the sound of an ambulance going past. It was loud and very disconcerting – I put my hands over my ears to shut it out. When I had one plate in my hand the trainer tried to take it off me. I was not going to let him take it as it was the only thing I could find and identify. I was quite aggressive in my need to hang on to it which I did (small victory and the first time in the room I had felt briefly in control of what was going on).

All of a sudden a door slammed. I physically jumped in fright. The trainer then touched my shoulder which seemed to shut out all other the noise in my ears and at last I could focus on what he said. He asked me to pick up the red glasses, I had found 2 sets of glasses and apparently red is the dominant and last colour you can see as your eyes fade. I couldn’t identify the red ones so I picked up both, feeling useless. I shuffled my way round the room again and found cushions………lots of cushions. Where’s the bl***y towels?? I was getting angry and frustrated and showing it by huffing and puffing. Success. I found a towel – which was immediately taken from me. I grabbed it again and was determined not to let go. There was a tug-of-war going on and I was determined not to lose. I did eventually manage to fold a towel but never found those ruddy socks.

I left the room and took off all the kit. 8 minutes of my life I would not like to repeat but recognised through earlier training that I was showing classic symptoms of someone with dementia and being handled incorrectly.

De-briefing was very interesting. They gave me a number of the tools I would need to help deal with someone with dementia who was showing signs of upset. I would like to say it was an enjoyable experience. It wasn’t, but it was a very good learning experience. I was nervous and jittery for the remainder of the afternoon and not back to my normal self until later in the evening. I won’t forget it.