Dementia Simulation Training is giving people a confronting glimpse of what it’s like to live with dementia, in order to promote more compassionate care in Australia.
It’s about time. Last year the Aged Care Royal Commission identified the need for dementia care as one of the main reasons people enter residential aged care. It also found care staff needed more understanding of dementia in order to effectively communicate with and care for people with the condition.
“Personal experiences of dementia are largely under-explored,” the Royal Commission Interim Report reads. “As a person’s cognitive capacity declines, it may be difficult for them to make themselves understood. Other people may not always take the time to listen and to understand them. There is no doubt that residents with dementia experience fear and confusion.”
“people who are not cared for respectfully can experience outbursts of frustration and rage.”Royal Commission Interim Report, page 116
Dementia Simulation Training for hospital staff
Since 2019 Toowoomba Hospital has been addressing this in an immersive way with a Dementia Simulation Training program for its staff. Participants wear a full body suit and equipment that simulates the experience of dementia and frail old age, while they attempt to complete everyday tasks like brushing their teeth and pouring a glass of water.
“The experience itself goes for about ten minutes, but many feel like it’s gone for a really, really long time,” says Toowoomba Hospital Nurse Educator Heather Hoey. “It’s very confronting for a lot of people.”
The suit restricts joint movement. Wrist and ankle weights simulate muscle weakness. Special gloves make manipulating objects difficult. Goggles and headphones scramble vision and sound. Mrs Hoey said she developed the program to show participants not just what it’s like to have dementia, but also what it’s like to be old.
“They understand why older people often give up halfway through a meal because they’re exhausted.”
“The demographic of patients who come to our public facility, are ageing. And to provide person-centred care we need to understand our patients more. This certainly is a way of helping staff to understand the physiological limitations that an older person may be experiencing.”
“(After the experience) they understand why older people often give up halfway through a meal because they’re exhausted, just trying to meet and manage their joint limitations.”
As you might imagine, the experience is emotional and psychological as well as physical. Of around 200 participants so far, Ms Hoey says three became overwhelmed and asked to leave early. “I actually had a gentleman the other day, who is a security officer used to dealing with quite traumatic and difficult situations. And his respiratory rate went up. He was visibly perspiring, and I pulled him out early. He said to me that he really had no idea what his grandparents might have gone through.”
Every case of dementia is different
But is that really what someone with dementia experiences? How accurate are simulation programs? According to Dementia Australia, “The hallmark of dementia is the inability to carry out everyday activities as a consequence of diminished cognitive ability.” However, there are many different types of dementia, and symptoms differ from case to case.
Aged Care education agency Brain Sparks runs a full-body dementia simulation program called Dementia Live. Director Sue Silcox acknowledges that the simulation is more intense than what many people with dementia would experience.
“Someone with dementia may only experience one or two of (the sensory experiences in Dementia Live),” said Ms Silcox.
“But then, somebody with dementia is experiencing it for a long time. In Dementia Live they’re only experiencing it for a few short minutes, say seven minutes. So, you do need to have people’s senses assaulted, so that they can get to feel it in their body.
“It is a simulation that represents how easy it is to have people become confused, become frustrated and angry, or withdrawn. It really gets you in touch with your emotions really quickly.”
So, how does simulation make better dementia care?
Both simulation programs include an important reflection phase which translates the simulation experience into better care.
Sue says Dementia Live participants can identify better ways of responding to friends, family members, community members, and clients with dementia because they have insight into their behaviour. In the reflection phase participants discuss how to bring this insight into different aspects of care.
For example, reducing noise and visual disturbances in a room can make an environment more comfortable for someone with dementia.
“When you consider how noisy the environment can be in an aged care facility – well, not just in an aged care facility! When you think of someone with dementia in shops with rattling trolleys and things falling down, it helps to understand the impact of noise or the impact of vision.”
Ms Hoey says Toowoomba Hospital staff are inspired to better understand and communicate with patients with cognitive impairment after participating in Dementia Simulation Training.
“(Nurses) previously didn’t understand the significance of diminution of sight, of hearing, just how significantly it compounded the person’s ability to comply or just understand direction in a hospital setting.”
Ms Hoey plans to expand the simulation training across the medical service.
“The whole purpose is to build and support empathy in clinicians.”
Dementia Simulation Training seems a simple and effective way to bridge the gap between carer and client in aged care. It might even be key to creating more inclusive communities and healthcare systems.