Enabling EDIE: A person with dementia’s perspective of dementia

By November 8, 2019 Awareness, Singapore
As part of Designathon 2019, the Alzheimer’s Disease Association (ADA) provided an Enabling EDIE workshop for participants to experience the feelings of frustration and helplessness to increase empathy and explore intervention strategies for persons living with dementia. Heather Taylor, shares with us her experience during the workshop.

By Heather Taylor

After encountering a traumatic or life-changing event, people may choose to disclose their fears and concerns so others may know the struggles they face. However, no matter how vivid the details are, such verbal descriptions can often only go so far. Situations such as these can cause the individual to feel lonely, misunderstood or even ostracized because of their exclusive experience.

For individuals who are diagnosed with dementia, these feelings of isolation and fear are often exacerbated in more ways than one. Family and friends could unconsciously begin to baby and exclude the individual to protect. Or, they could become increasingly frustrated when the individual can no longer articulate words or ideas that once came easily to them. They fail to understand and express agitation when their loved one with dementia are not able to accomplish an action as simple as going to the restroom.

Dementia is a condition which affects mental reasoning and cognitive processes. Things that were once done without thought, may no longer be that simple or easy for those with dementia.

To help the general populace understand, or at the very least, enable them to experience these feelings of frustration and helplessness to increase empathy and explore intervention strategies, the Alzheimer’s Disease Association (ADA) started a virtual simulation training workshop called Enabling EDIE earlier in March this year.

It was a very trying experience, both emotionally and physically.
What is EDIE?

EDIE (Educational Dementia Immersive Experience) is an immersive workshop that uses virtual reality technology to enable participants to see the world through the eyes of a person living with dementia. The experience is aimed to enhance their knowledge of the impact of dementia and adopt reablement approaches or interventions that will improve the quality of life for persons living with dementia. By wearing headphones and an oculus headset, the participant is exposed to both visual and auditory stimulus.

To sensitise our Designathon-ers to the condition, the Organising Team of Designathon 2019 brought in ADA and provided a customised one-hour Enabling EDIE workshop for them. Heather Taylor, shares with us her experience during the workshop.

This virtual experience opened my eyes to the challenges this cognitive disorder can cause and helped me have greater empathy for people with dementia.
How did it feel to be Edie?

Having the opportunity to experience this simulation for myself, I now have a better understanding of the impact that dementia has on persons living with the condition. It was the small details that really distracted me. On the way to the toilet (as Edie), I had to navigate through various obstacles that I would normally not have noticed in my everyday life. It was a very trying experience, both emotionally and physically.

After experiencing the second part of the simulation, where changes and improvements were made, it made me realise how helpful little changes to the physical environment can be to enable persons living with dementia to continue living independently in their own homes. And how, as caregivers, love and patience can truly go a long way to help our loved ones with dementia live a dignified life.

Any final reflections or advice?

To be unable to do something as simple and personal as going to the toilet and reliving myself, and experiencing it as Edie did made me realise how helpless and frightening the progression of dementia can be. This virtual experience opened my eyes to the challenges this cognitive disorder can cause and helped me have greater empathy for people with dementia. I really hope more people can have the opportunity to experience this workshop so that they can gain a better understanding of the condition and its impact and be more patient and considerate before acting out in anger and frustration.

The Enabling EDIE workshops are conducted at Alzheimer’s Disease Association (ADA) Singapore. Find out more and sign up at the ADA Academy.

Preventing dementia, one step at a time

| Awareness, Singapore | No Comments
With the aim of serving the senior population of Singapore, four students of Nanyang Technological University embarked on…

My wellbeing as a caregiver and how community support is important

| Awareness, Caregiver, Singapore | No Comments
Robing has been caring for his mother, Sally, who was diagnosed with dementia at the age of 62. He…

My journey navigating through mum’s dementia

| Awareness, Caregiver, Singapore | No Comments
Robing has been caring for his mother, Sally, who was diagnosed with dementia at the age of 62. He…

Be inspired! Subscribe to get stories and updates from Project We Forgot in your inbox.