“Hello James. My name is Allison. How are you doing today?”
Speech-language pathologist Allison Chen sits in an office chair, facing a blank wall. She’s in a virtual reality headset, practicing how to communicate with a person living with dementia.
Chen is modeling an innovative system designed for personal support workers and other frontline caregivers. The virtual reality (VR) training – delivered through a headset – gives real-time feedback on health-care professionals’ communication after they interact with one of two avatars, James or Nala, both showing signs of moderate-stage Alzheimer’s disease.
‘Be EPIC-VR’ is more than just a training video, because it allows participants to practice speaking with clients and meeting their needs in an immersive environment, offering guidance after each interaction. It’s like being in a video game at a long-term care home or in someone’s home, where you are the person providing care.
The unique solution was developed by Western professor Marie Savundranayagam, who started an in-person version of the training in 2016, using actors so the participants could truly practice their communication in real time.
“It’s so powerful because you can make mistakes, and you’re making them in a safe way. Most times, we learn more from our mistakes than our successes. The participants feel really safe – if they mess up, no worries. They are interacting with avatars, who display real emotions. This means that when a participant says something directive or not person-centred, they don’t have to worry about upsetting a real person or being at risk of physical harm,” Savundranayagam said.
She directs the Sam Katz Community Health and Aging Research Unit, which houses the Caregiving Research Laboratory (CARE Lab). Its aim is to conduct research that supports aging in community, with an emphasis on improving dementia care.
“I’ve been wanting to create a training program for frontline health workers or any caregivers for a very long time, since the late 1990s, ever since I first started getting into ageing. I wanted to create an intervention – something that drives change,” said Savundranayagam, a professor in the Faculty of Health Sciences.
Communication is ‘person-centred’
Now the goal is to scale Be EPIC-VR, spreading the lessons far beyond London, Ont.
Enter VR headsets, which can deliver Be EPIC anywhere, without the need for a workshop, paid actors, or travel for Savundranayagam and her team. They also find health-care workers are more likely to finish the full session because of the ease of learning and practicing virtually.
“It’s fantastic, because we’re always trying to provide education, but we don’t always have the resources to do that. This is going to reach a lot more people in an evidence-based way, and it’s built on years of research in speech-language pathology and dementia communication research,” said Chen, research coordinator of the CARE Lab.
“It’s going to fill that gap that we need in the community and in long-term care.”
Savundranayagam’s work to develop Be EPIC-VR is funded by Future Skills Centre and the Alzheimer Society of Canada. An advisory board, including people with lived experience, employers in long-term care and home care, clinicians and researchers, provides feedback.
The goal is to develop or improve communication skills that are “person-centred,” meaning the focus is on the needs, history and unique identity of the person living with dementia. That leads to richer relationships and increased trust with the professionals providing care.
“It doesn’t matter if you’re young or old or middle-aged, when you have dementia and perhaps have some difficulty in communicating your needs, there’s a risk you will become viewed as the disease and less as a person,” Savundranayagam said.
Be EPIC-VR also prioritizes an understanding and openness to cultural preferences. Nala, one of the avatars used in the program, needs to pray before she gets ready for the day.
“If you’re going in and rushing to say, ‘It’s time to get ready, what would you like to wear?’ She’ll say, ‘I’ll need to do my puja (Hindu prayers) first.’ With Be EPIC-VR, there’s time to think before they do. Sometimes (in health care), we’re just doing, doing, doing, like on a treadmill, without really thinking about how it is impacting the person we’re supporting,” Savundranayagam said.
George Philip, a PhD candidate in health and rehabilitation sciences, said it’s important to see a South Asian woman as one of the avatars in the program.
“It’s the first to really include cultural diversity. A lot of personal support workers don’t have that exposure or training in cultural inclusivity when providing care,” said Philip, who studies racialized persons living with dementia and the ways stigma can impact their care.
“With the population of older adults growing in Canada, and concurrently, the population of racialized older adults growing as well, it was important they were well-represented in this training program,” he said.
Program deployed across province
Be EPIC-VR has already been used by workers at long–term care homes and home care agencies in Oakville, Peel Region and across southwestern Ontario, from Chatham to Milverton.
It walks participants through a series of tasks and conversations, offering “hints” – and realistic responses from the avatars – when communication needs improvement. If the response from the person taking the training fails to hit the mark after four opportunities to improve, Be EPIC-VR provides a specific prompt with the exact phrasing to be used so the participant can move through the simulation.
It was important to Savundranayagam and her team to target personal support workers first, since they are often forgotten when it comes to professional development and training opportunities.
“I was a little nervous, only because of the fact that I’ve never touched virtual reality before. But then once I got engaged in the program, I realized there were language techniques I was utilizing that maybe I shouldn’t be.” – Kendall Cushman, personal support worker who participated in a video about the Be EPIC-VR training
Early data shows personal support workers are adopting skills and ideas from the Be EPIC training to better care for patients with dementia. Grace Norris, a graduate research assistant in the CARE lab who previously worked as personal support worker (PSW), is analyzing the data gathered through the program so far.
“When we interview the PSWs who have tried it after the training, a lot of them say they used specific strategies to communicate and build meaningful relationships with their clients,” she said. “Because it’s highly applicable and experiential, it’s easier for them to transfer it to their real care practices.”
Managers who took the training also shared enthusiastic feedback:
- “Be EPIC-VR is something every health-care workers should learn. It’s going to bring a tremendous amount of knowledge and skills into practice,” one said.
- “I was so thrilled to even see some of the expressions that Nala and James had – it was so real,” another said.
- “Be EPIC is something which will teach you how to enter their world and speak their language,” one manager said of communicating with people living with dementia.
Savundranayagam says the positive reaction to the program has been humbling for her. She hopes one day it will become mandatory training.
“It’s just so foundational. If you’re going to work with a person living with dementia, having those communication skills is essential,” she said.
“It’s easy to get lots of people to have access to an online training module. You train and do a quiz. Nothing is wrong with that, but how do you know it’s actually translating into care? The way we have done it, I feel more confident the participants in the Be EPIC-VR training will have something they can use on the floor.”