Commissioners from Wrexham County Borough Council gave carers from residential and day services a chance to visit the Dementia Bus to experience the sensory journey of how it may feel to live with dementia. They were joined by other health and care staff who work directly with people living with dementia. The RIC Hub went along to find out more.
I am at the Wrexham Wellbeing Hub to visit the Dementia Bus which is parked outside. I’ve read about it before, an interactive training experience. I imagined a double decker bus with leaflets to read, perhaps being invited on board for a talk with dementia experts inside. I was wrong….
I recognise the faces of two carers from a digital user network a few weeks previously. They appreciate the opportunity to access training and care for people with dementia. They speak compassionately about the people they support and hope to understand more about how they feel. They tell me stories of behaviour they don’t fully understand; one gentleman will only walk in bare feet ‘he’ll never put socks on’ she tells me.
My name is called, we are taken in small groups to the bus outside, a small branded trailer with no windows. Inside we sit on a bench with a curtain drawn in front of us, we receive our instructions. We are given a number of accessories to wear and ushered inside one by one.
It is noisy, dark and disconcerting, I feel around with my hands in discomfort to complete a series of tasks I am unclear of, I didn’t quite hear the instructions. Ten minutes feels like half an hour. At one point I feel very vulnerable being ushered to sit down. When we are led off the bus, we all remove our accessories and look at each other, I feel small and insecure, others are clearly emotional, a care home manager says she felt frustrated. We notice we react very differently as we chat on the way back to a room indoors for a debrief. The trainer is a former care home manager, he tells us his own story about why he travels the country raising awareness about Dementia. He references various studies and research like the Boston Red Plate Study ‘I always wondered the red juice always goes so quickly at breakfast’ a carer says.
The trainer tells us that people with Alzheimer’s are more likely to develop peripheral neuropathy, symptoms may include pain in hands and feet. “This may lead to shuffling, you may see people take their shoes and socks off, they may look inside their shoes for stones”. The carer opposite me looks at me pointedly – ‘the shoes’ she says in amazement, ‘just what we were talking about before!’.
We agree it’s been a thought provoking experience and we reflect on living like this day to day and how we treat people with dementia we come into contact with. I make a mental note to be more gentle and considerate as I am reminded of the vulnerability of people living with dementia.
The Virtual Dementia Tour/Dementia bus is such an important session as it covers such a variety of emotions and experiences, as well as the reality for many who are living with dementia or caring for someone with dementia whether that be as an unpaid carer or in their professional caring role.
Kate Evans, Person Centred Dementia Coordinator, WCBC Commissioning and Contracts Team
It was a good experience to learn a little of how people we look after daily can feel. Hopefully we can work towards making life better for the people we support.
Carer
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