Dementia is a diagnosis met with universal dread. Often alluded to as ‘the long goodbye,’ most of us fear watching a loved one succumb to it as much as developing it ourselves. The nature of dementia means that it can be hard for those living with it to explain what it’s like.
To coincide with National Carer’s Week, professional care provider Right at Home have organised the Virtual Dementia Tour. This is an immersive experience that shines a light on the experience of living with dementia. Using sensory tools, the tour gives visitors an idea of the vulnerability dementia patients feel on a daily basis.
Evelyn O’Rourke was at the first stop on the tour. She joined Seán O’Rourke in studio to share her experience. She began by explaining just what’s involved.
“There are four preparation steps… Plastic insoles with little spikes go into your shoes, to demonstrate how many people live with peripheral neuropathy which is as a result of damage to the nerve endings… these immediately make you shuffle.”
Visitors then put on large, heavy gloves that impair their grip. Next, modified sunglasses designed to simulate macular degeneration. Finally, visitors put on headphones to hear a distracting soundtrack of static and confusing voices. Once this preparation is complete, visitors board the tour bus and attempt to complete tasks such as buttoning a shirt. Of her experience Evelyn remarked:
“I found it deeply unpleasant, Seán… I lasted about 60 seconds… I just didn’t want to do it anymore.”
The bus is usually used as part of training for carers, but on the tour, family members can experience it. Evelyn met a woman called Vivienne O’Sullivan whose 89 year old mother has Alzheimer’s disease. Vivienne told Evelyn about some of the challenges of caring for her.
“When your mum has strayed outside the door at 3 in the morning and you don’t know whether she needs to be sectioned or cuddled… it’s one of the most awful diseases, it really is the long goodbye.”
Vivienne was keen to gain new insights about her mother’s experience by coming along to the Virtual Dementia Tour. Afterwards, she explained to Evelyn how emotional she found it.
“Everything became very slow, every move was very difficult… It made me cry. I began to realise just how nervous my mum must be.”
The Virtual Dementia Tour is on the road for the rest of the week, visiting Kildare, Cork and Galway.
You can listen to Evelyn’s report in full on Today with Seán O’Rourke here.
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