What do we find out about ourselves and those we care for, when we learn more about living with dementia?

When we are caring for someone living with dementia, we try our best to understand what the person might be going through and the changes they are experiencing. Over time, we may come to recognise the range of emotions the person feels, and we may learn to anticipate how certain situations will make them react. We do all we can to provide good care. 

Of course, we can never fully understand what it is like to walk in the shoes of someone who is living with dementia. But there are tools we can use to develop our empathy for what the person is going through.

‘Empathy’ allows us to feel how someone else feels, and to look at things from their point of view. It can also help us to reach out to a person, and let them know you are there for them.

Learning empathy

The changes that occur in the brain of someone who is living with dementia can alter the way their senses function. 

The experience of Dementia Live® mimics the feelings and emotions that accompany sensory and cognitive impairment, giving carers greater insight into what it might feel like to live with dementia, enabling them to have a deeper understanding and empathy for what a person living with dementia is going through. 

When aged care workers and carers are trained to consider what it would be like to live in the shoes of someone with dementia, they often say “wow!” as, for a few minutes, they begin to understand what it must be like to live with your senses impaired. 

There is often an “aha moment!” as they begin to see the world from a view they have never been challenged to think of before.

The effect of dementia on our senses

Dementia Live helps people understand what it might be like to live with meaningless noise around them, or not to be able to distinguish between colours. 

It helps people feel how difficult it is to do up buttons or pick up coins. 

The experience can trigger powerful emotions as people come to understand how challenging it is to accomplish simple, everyday tasks, including the activities of daily living, when your senses are impaired or when you are frustrated or confused.

When we realise what it is like to live with our senses altered, when we are less able to perform simple tasks, or when there are barriers to communicating, we can start to feel the challenges that people living with dementia face on a regular basis. 

When we have been immersed in an experience that mimics some of the feelings and sensations that someone living with dementia may have, then we are in a better position to meet their needs as we care for them.

“Insight into the loss of senses” 

Many who have experienced Dementia Live say the training has helped them become more empathetic towards people living with dementia, and they would encourage the tool to be used more widely so that the broader community has greater insight into the condition.

Retired GP and aged care advocate, Dr Bob Riesson, said, “Dementia Live gives insight into the loss of the five special senses, and interprets how that might be received by someone with dementia.”

Helen Jomoa, operations manager, Lulworth House, said, “Dementia Live is an immersive experience that aims to get participants to really feel what it may be like to have dementia. By feeling this, it helps us to become more empathetic to people we interact with who have dementia.”

Ms Jomoa said the experience helped her with her own mother’s dementia, and give her inspiration as to the best ways to respond to people living with dementia.

“When I did Dementia Live, I could recognise clearly all the different stages of dementia that my mother went through. I would definitely recommend it because it has helped me understand the best way to respond to different behaviours and how I can be empathetic to our residents.”

“Realistic”

Nerida Pankhurst, service manager, Blue Care, said the “submersive experience” of Dementia Live was confronting for some who took part.

“Some sat down and just gave up because it was all too hard. Some came to me and said, ‘Can I leave now’ when it became a bit hard. 

“So it really is realistic to our staff, and they start to think about what a person living with dementia might experience in their day,” Ms Pankhurst said.

Reflection a key part of Dementia Live experience

As important as the experience is, reflection and sharing of the experience afterwards helps participants think about how what they have learnt may be applied in the real world. 

The reflection gives participants new skills and the confidence to go back to their own work or home and try new things for themselves.

Ms Pankhurst said the reflection helps participants consider some of their own care situations. “The trainers get you to think… about what more you could do when caring for someone with dementia. Do you now understand them better?” 

For example, if showering has become a problem, the Dementia Live tools will provide ideas for how to manage this situation, and the group discussion afterwards provides an opportunity for the group to come up with solutions and discuss together. 

The empowerment tools are practical, and are designed to be able to be used when problems arise at any time after the experience.

A simple tool to improve care, communication and empathy

With increasing numbers of people living with dementia, Dementia Live is an opportunity to build both understanding and empathy. The experience helps carers develop the attitudes and actions that are needed to treat consumers with dignity and respect and deliver true person-centred care.

From gardeners to nursing staff, marketing departments to care director, family members to community, Dementia Live empowers people with tools to improve communication, care, and understanding. 

Dr Riessen said he would like to see the experience used more widely throughout the community.

“The experience of Dementia Live is something that all sectors of the community should have because it will lead to a better understanding, better care, possibly prevention or delay of some aspects of dementia, and hopefully better decision making in the medical and political circles,” he said.

With Dementia Live, selected staff are trained as coaches who take the knowledge back into the workplace to deliver simple, effective courses on-site to colleagues, residents, families and the community. The training is easily adapted by the coaches to suit any number of their own unique needs.

To register for a Dementia Live experience or to find out more about coach training, contact Sue on 0402 319 361 or sue@brainsparks.com.au, or visit the Brainsparks website.

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