What is the world like to someone with dementia?
PUBLISHED: 07:00 16 June 2019
Exmouth Journal reporter Daniel Wilkins got the chance to climb aboard a dementia bus and spend 10 minutes in the shoes of someone living with dementia
With white noise and indistinct chatter blearing into my ears and my vision impaired, I felt helpless and useless.
But then I only spent a maximum of 10 minutes like this, what must it be like for someone living with dementia?
A touring 'dementia bus' came through Devon this week giving me and 35 others a chance to experience a few minutes of what those who live with the degenerative disease go through 24 hours a day, seven days a week.
The bus, operated by Training 2 Care UK, goes to nursing homes and domiciliary care providers to show staff - and in many cases families - what it is like for those they are looking after.
The experience was organised by Home Instead Exeter and East Devon, based in Budleigh Salterton.
I was joined by an Admiral Nurse, care staff, dementia support managers, and volunteers who run memory cafes.
At the start of the session we were split into groups of three which all went into the bus, parked in the car park of St Peter's Church, separately led by facilitator Tracey Bourne - who took the role of a heavy-handed care worker for the experience.
We were asked to put plastic soles inside our shoes with spikes on them pointing upwards. This was to mimic the symptoms of nerve damage.
Then a glove with the fingers sewn together was placed on our dominant hand so we would have some idea of what it is like to try and grip something if we had arthritis.
We were then given glasses which were tinted and had black marks on them to simulate the effects of age-related macular degeneration.
We had headphones playing a mixture of white noise and indistinct chatter which we were later told is what dementia patients hear especially when they are sleeping, something I was not aware of until now.
One at a time were taken by Tracey into the main section of the bus and issued with what turned out to be simple instructions - the only problem is I could not hear a word of what she said.
Each of us had specific and different instructions - for me one of them was to clear a non-existent dinner table.
So I and the other two people in my group went into the main section of the bus, with lights flashing like a 1990s disco.
I had no idea what I was supposed to be doing, I knew I had been given instructions but I did not know what they were.
I tried to make myself look busy and eventually Tracey came up to me and said 'do something useful'. Immediately I was thinking 'like what?'
It didn't occur to me at the time, but I could actually hear the instruction this time even if the lack of specific instruction was frustrating.
So I headed to a sink in the corner of the room - which had no running water - and tried to pretend to poor a glass of water.
This is when I realised that the frustration I was feeling must be like what dementia patients go through when they don't know what their carer or family member is talking to them and have no way of communicating it properly.
The noise from the headphones had almost become second nature to me when there was a loud siren from some sort of emergency services vehicle which startled me.
Shortly after, I finally had a more specific instruction from Tracey - 'find a shirt and put it on'.
So I found a shirt, I was able to identify which way round it was supposed to go and put it on.
I was hoping that Tracey wouldn't ask me to do up the buttons but she did which proved a frustrating task and Tracey ended up doing it for me.
I can only imagine how frustrating it is for anyone who cannot dress themselves - no matter how hard they try - and has to let someone else do it for them.
It wasn't long after that Tracey removed my headphones and glasses and her demeanour changed from that of a drill sergeant to a smiling, helpful training facilitator.
We were given a de-brief where the carers among us were given some advise on things to work on with families to make life easier for those living with dementia.
These included swapping reminder notes for pictures and visually someone with dementias is more likely to see that and putting the box from dinner in front of them to remind them what they are having and to wet their apetite.
For more information about the dementia bus training, go to the Training 2 Care website
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