Event helps people start to understand what it's like to live with dementia

An Ipswich care company has given people an immersive insight into the world of somebody living with dementia - to help carers further understand how it feels.

The experience was hosted by Home Instead, which cares for people with dementia in Ipswich, Felixstowe and Woodbridge within their own homes. In three days, 80 people have been given the chance to personally experience how dementia affect a person’s everyday life. 

This is so important, says community engagement officer Wendy Chard, because the experience helps carers "to further understand how it feels to live with it, making sure we can deliver the best quality of care to our wonderful clients.” 

John Sanders, the tour’s facilitator, is key in making this experience feel so accurate. 

Participants have their senses confused with thick gloves, goggles, spiky insoles on the insides of their shoes and headphones blaring a barrage of noise. The bus is dark except for flashing lights, making the whole experience incredibly disorientating. 

Anne Havey, care-giver leader, explains how people often don’t appreciate that dementia affects all the senses, and is not simply a memory-loss disease. 

Meanwhile, John will give a list of ‘simple’ instructions, such as writing a three-sentence letter or half-filling a glass of water, which, he says, the participants haven’t a hope of understanding.  

Failing that, he will whisper the instruction to “find something useful to do.” Looking around, they might try to stack the plastic plates or straighten the cushions on display, only for John to snatch the items out of their hands and mess up their efforts. 

The effect is intimidating, and leaves the participant feeling vulnerable and unsure of themselves. 

“I found it really emotional,” says Sophie Martin, Home Instead’s marketing co-ordinator, who used to be a care-giver herself until mid-2021. “It makes you question yourself, makes you want to withdraw. You want to do things correctly, but you can’t.” 

Family and friends of people with dementia have also found it an eye-opening experience. 

Jamie Gooden and Steve Cable tried out the experience on Friday after their mum was diagnosed with dementia two years ago.  

“It was really helpful,” says Jamie. “It’s difficult, and patience can be short, but I want to understand more.” 

Understanding and having patience with dementia suffers, the team agree, is key, and they delighted that the virtual tour bus has “already started to generate lots of conversation.” 

General manager Joanna McCall says: We would like to thank the Virtual Dementia Tour bus which is managed by Training2Care as UK partners to Second Wind Dreams, and thanks to West Suffolk CCG for funding this initiative.”