Restoring Memories: Frontiers of Treating Dementia with VR

By Chloe Jones

Memories are often lost in the passage of time. Details slip away, moments combine and reorder, and recall can become more challenging with age. Illness can dramatically and tragically accelerate that process. Dementia can upend what so many take for granted, but one promising treatment—a true frontier now gaining traction—may be the immersive power of VR.

One person on a quest to push VR limits is Suzanne Lee, the founder of Pivotal Reality, a VR platform designed to help people living with dementia. Lee brings VR to nursing and care homes and uses the technology to inspirer younger generations through community outreach. When asked, she even gives motivational speeches.

Her passion is contagious. I was instantly struck by her enthusiasm for VR when we first met at Mobile World Congress in 2018. Today, Lee is an active member of our Lenovo Champions community; we’ve followed her journey as she completed her VR prototype platform for people living with dementia and most recently contributed to the book ‘Virtual and Augmented Reality in Mental Health Treatment.’

Scotland Women in Technology also recognized Lee with a nomination for the ‘Inspirational Woman in Tech of the Year’ award, and she was a finalist for Scotland’s Converge Challenge.

A mother, CEO, ambassador for women in technology, Digital Audit Lead for Lloyds Bank, wife and blogger, she still found a moment to speak with me, to share how she envisions VR shaping people’s lives.

Restoring Memories: Frontiers of Treating Dementia with VR

Q: Before we get into the good work Pivotal Reality does, I’d love to know your view on why we need VR. Why does it really matter?

As a species we view things in 3D: our world, our interactions, everything.  Up until now, we have enjoyed technology that provides 2D experiences. I think it’s hugely exciting to bring our digital interactions into a 3D environment through virtual reality. I honestly believe this medium is a disruptor, and that is why I dedicate so much of my time to experiencing it and raising awareness. For me, the biggest promise of VR is the accessibility and interaction. I have attended social VR events with people across the globe where we are all standing together learning and interacting virtually.  Sure, video calls can bring you together, but VR allows you to be present, free to roam the venue, join in as your embodied self and leave a lasting impression.  You feel you actually ‘went’ there rather than ‘I dialed into that.’

Q: What set you on this path? How did you become so invested in this particular application of VR?

Both my grandmothers lived with dementia before they passed away. I was interested in VR and knew I wanted to get closer to the technology, but found that to be a challenge working in the heavily regulated financial services industry. It was one day seeing my gran and my daughter interacting, my gran explaining to my daughter what a turntable was, that I thought it would be great to have them both see what that looked like, talk about it together, and properly grasp the subject matter. That sparked the idea for me, but it was after my gran’s passing that I saw a YouTube clip of VR used in a care home. It was before the term ‘fake news’ was coined, but I did have suspicions that it was too good to be true—the reactions surely had to be staged. So I ventured to see for myself. I took my VR headset to a local dementia support group and knew this was where I wanted to invest my time. This was where I could help others in a truly meaningful way using VR! I recreated the YouTube video using a beach setting—this lady named Margaret loved it!  She had dementia but was taken back to a family holiday when she and her brother were little children. After I removed the headset, she was crying; I panicked initially and was concerned I had done something wrong.  But actually, she was happy and reminiscing about good memories with her brother that she had forgotten. It was even more meaningful as her brother had passed away. I had goosebumps and knew at that moment virtual reality was a powerful tool for reminiscence. I’ve been on this path ever since, trying to develop experiences for the elderly and those living with dementia.

Restoring Memories: Frontiers of Treating Dementia with VR

Q: So you launched Pivotal Reality, which we’ve seen go from success to success in just a year. But it can’t be easy to get off the ground. How have you grown Pivotal Reality into what it is today?

It has been hard, especially as this is the first time I ventured out to do anything like this! I needed to understand more about dementia and the dementia industry. I spent a long time researching, attending events, testing and using VR with people. I had to scope out the landscape to make sure what I was creating was going to fit real needs. I literally was learning everything from scratch—there wasn’t even a ‘digital design framework for dementia’ anywhere in the world! I was also learning the business side of things: how to create a business entity, mission statements, website, logo, branding, tone of voice, creating business plans, pitching and everything business related.  It has been an incredibly steep learning curve, especially when I have been working and have my family life as well. I’ve also had to teach myself some technical skills.

I used all of my learning to design and—with help from my friends at Eventual—a VR app prototype.  I was delighted at that stage and felt a real sense of accomplishment! Since then Pivotal Reality has grown into a brand, and I make many visits to care homes to understand the impact of what I am doing as well as assessing the market need. It’s amazing  how word of mouth is starting to spread.

Q: VR can be so transformative. I am sure there are many, but can you share a moment when VR really made a difference or altered someone’s perspective?

Two weeks ago in a care home, I was told not to be offended if a particular resident didn’t talk to me because she never interacted with anyone. She didn’t talk, didn’t join in, and kept to herself. She was willing to try out VR for the first time so I put on Henry, a 360-degree animated experience. It’s a lovely wee short story of Henry the hedgehog’s birthday, but he has no friends because of his prickles. As he blows out the candles on his birthday cake he makes a wish to have a friend. Suddenly, at that moment, this lady started to sing Happy Birthday out loud! She was bouncing her cross-legged foot and tapping her leg in time with the music! It was astounding to witness. The caregivers were in shock and said it was absolutely brilliant.

Another lady, who had been a professional ice skater, wished to be on the ice again, and I was able to bring her this immersive experience in VR. She recalled the correct terminology of all the moves and thought the entire experience was wonderful. I was able to re-ignite feelings of actually being on the ice—sensations she thought were gone forever.

Restoring Memories: Frontiers of Treating Dementia with VR

Q: You’re often asked for advice from specialists or charities on VR training and its efficacy for dementia and Alzheimer’s. Looking ahead, what are the possibilities and challenges?

Technology is touching every industry, especially as it is becoming cheaper and easier to access. Still, we are in the early adoption stages of VR. The challenge at the moment is that not everybody has a VR headset or knows someone with one. Or worse, people have tried a cheap or mobile headset where the quality has been poor and assume all VR is like that, which actually causes harm to the industry. There is so much confusion out there about how to get started with VR. Especially with ‘VR ready’ computers or different outlets with competing claims on which is ‘the best VR Headset to buy to get started’, or which apps would be useful for specific experiences. There is a shift as more people want to know more, but there isn’t anywhere that guides you in simple terms—that’s the reason for starting my YouTube channel! The cost of developing specific training sessions in VR is high and there is actually very little validated research out there specifically for the dementia industry. I think a lot of people are unsure and don’t want to be the first to take any risks. If more people understood VR then more residents and older people would benefit from this technology today. As with any new technology, there are challenges around spreading the word about how incredible it can be for niche areas.

Q: Smarter technology for all is what we are all about. How have you been using the Lenovo Mirage Solo with Daydream VR headset in your work?

The Lenovo Mirage Solo headset has been great for me in so many ways. As I mentioned, accessibility is important and care homes need to have solutions that don’t cost large amounts of money. Traditional virtual reality solutions often require buying a high spec PC or laptop in addition to a headset. Then you have the added complication of cables that are potential trip hazards and a serious concern when working with elderly people! So a wireless headset like the Mirage Solo was the best solution for me and my duty of care. It’s also fantastic to travel with—I brought mine up to the Highlands of Scotland to use at three care homes in Ullapool. There is a dementia care specialist there and she mentioned she would be transporting a Mirage Solo headset between three care homes in addition to her usual everyday items, so it definitely suits their needs too.  Imagine having to carry heavy equipment, plug it all in to set it all up before getting started? Well we just carry it in one trip, switch it on and go. This is ideal for anybody who lacks confidence with technology, too. The Mirage Solo really removes some of the barriers to just getting going!

Q: From meeting with Alzheimer’s Scotland for a possible partnership to being nominated for the ‘Inspirational Women in Tech of the Year’ award, you are receiving well-deserved recognition. So what’s next for you and for Pivotal Reality?

Right now I am trying to deliver small changes that will be sewn together to create a large change.  It’s a new field, so I am working on awareness by showcasing the benefits of VR for reminiscence and combating social isolation. There’s a bigger piece that I need to work on in terms of helping to show people in VR what dementia is and how it actually affects people. I’m just scratching the surface. I love social VR and will be concentrating on how best I can include groups of people in my experiences through VR events. My prototype is multi-user compatible, so the technology is there; I just need to knuckle down and plan that beneficial first experience..

Q: Where do you see VR technology going in the future? How might it evolve and change patient lives?

Initially, for Pivotal Reality, it was all about bringing the outside world and places of interest inside for people as an entertainment-based service. It has evolved into an immersive reminiscence tool and encourages social interactions. The effects of this are already being seen with people interacting, talking, laughing, and sharing life stories with one another. The potential to bring health professionals, caregivers, and family into the scope means it has the potential to really transform the entire industry. People will be able to learn in a more powerful way—for example seeing 3D models of how dementia actually affects the brain or showcasing how someone living with dementia sees the world by experiencing it through their eyes. VR encourages compassion and understanding, which can help us support people who are living with dementia in a better way. That would be a great improvement for now, at least until a cure is found.

Q: Diversity and inclusion can be key in effecting positive change. As a member of the network Scotland Women in Technology, how do you see us closing the women in technology gap?

It’s really about showcasing role models and getting people to try things out for themselves. The future is technology-based, and I’m pleased to see the next generations being in a strong position to fix this issue. When I was growing up, I was one of a few girl gamers that I knew. The boys didn’t take me seriously when I wanted a turn, but I always blew them away with my skills! But today, computers are everywhere. Everyone is on social media and sometimes gender doesn’t even come into the equation. There is a point during high school years where girls tend to stop trying gadgets and gaming tech. But when I have been out demoing at schools, the queue of girls as well as boys is encouraging! It’s important for them to see another female there to show it’s for them as well. Scotland Women in Technology has definitely helped me to understand personally that technology is inclusive, and the work they do in Scotland is fantastic! Their research shows that females tend to talk themselves out of things more easily than males. If there is a barrier of any kind, then females tend to lack confidence in themselves at being able to jump over obstacles in their way. Sharing inspirational examples in simple terms helps to paint the picture that ANYBODY is capable of whatever they choose with focus, time, and determination, and it is something we should do more often as a society.

Q: You balance many roles both professionally and personally—how do you do it?!

Ha! I haven’t found the perfect balance and I do struggle at times! It’s not an easy quest to be on but I find the time because this is my passion. I’ve had to juggle my lifestyle to make sure I don’t have ridiculously late nights and plan ahead so that I can achieve small things every day to maintain positive movement.  All of those small actions add up and take you incredibly far in one year! The hardest part for me is being kind to myself. There is always a big to-do list, and I am behind on things I wish I had cleared by now—but Rome wasn’t built in a day and it’s important to be realistic with yourself.  My advice to anybody who is looking to do a side project as well as full-time job would be to mark out your boundaries… for me I need to keep quality family time during the weekends as well as work. I then identify hours of the day and night I can afford to use for Pivotal Reality or blogging or events, etc. It’s not as exciting when I say it like that, but that is how disciplined you have to be. Otherwise, you will burn out, struggle with lifestyle, and ultimately do yourself more harm than good.

Q: Finally, what piece of advice would you give to someone looking to create a startup based on their passion?

Do it!  It’s not going to be easy, it’s going to stretch you more than you think physically possible, but the rewards are immense. The pride of knowing that you are doing something you love each and every day will only make you grow as a person. You will learn loads, you might fail loads too, and that is okay. I am a true believer that putting energy into something breeds energy—in other words, the more you do with your passion the more your passion will do for you. For instance, I didn’t know that venturing out and using VR with people would lead to speaking at conferences or writing a chapter for an academic book or becoming a close friend with Lenovo and speaking to you here today! All small steps can lead you to places unknown, and if you are following your passion then you are going to love where you end up going! Don’t be afraid to try. 

Follow Suzanne Lee on Twitter @thehappylass and YouTube. You can also track Pivotal Reality’s work on Twitter @pivotalreality.

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