What if people with dementia, Alzheimer’s or cognitive impairment could enter a world that is comfortable, beautiful, friendly — and that they could control?
Too often, memory loss means losing a sense of identity and control over your living space. Mandy Salomon, a researcher-turned-
Her research involved not only learning more about engagement with people who have dementia, but also how to build an online platform that would provide a means for interaction so she could take her research from theoretical to real-world application. Salomon named the app and its multimedia world “Deva World,” and co-founded (with Serge Soudoplatoff) a Silicon Valley tech startup, Mentia, which is getting Deva World into the hands of people with Alzheimer’s and their caregivers. I recently interviewed Salomon about her research and company and their goals for impacting people with dementia.technology-entrepreneur developed an online game — really, a virtual worldthat people with dementia can access with a tablet — that she hopes will help people with dementia regain a sense of self. After a career in media, Salomon went to graduate school at Swinburne University of Technology in Melbourne, Australia to study virtual communities and identity. Her doctoral work resulted in a dissertation titled, “Finding Self in a Virtual World: Digital Engagement for People with Moderate to Advanced Dementia.”
Next Avenue: Why did you decide to build Deva World?
Mandy Salomon: People really started to think in the 1990s about expressing a social self in order to be well, in spite of the neurological diseases they may have had. So you would look at people with dementia and Alzheimer’s, and there was the biomedical disability — the attack on the brain — but there was also this social disability that comes with losing the opportunity to express who you are.
A sense of self becomes so depleted in people with dementia, and with that lower self-esteem, and with that inability to express who you are and have others understand, often comes depression, anxiety, agitation and all the behaviors that then people try to make better with drugs.
I previously had worked in media for many years, and did research within digital media, and it seemed wrong that the digital world was letting down people with cognitive impairment like this. Deva World came about because I decided to look at how we can take the underlying stimuli of the engagement and enrichment activities that you would get in a person-centered assisted living residence, and take that underlying stimuli and see them as means almost that you could import into a virtual environment. I thought it might be an alternative for people and a means of rebuilding a sense of self.
So, you created a virtual world where people with dementia can help an avatar do various things around her home and garden. How does this work?
A virtual companion greets the people who open the Deva World app — a friendly person who sometimes needs assistance, sometimes congratulates assistance given, sometimes makes suggestions. In our world, Julie — we call her Julie because she’s based on Julie Andrews — needs help with choosing a picture to put on the wall or putting on music, and everything is contextually placed in the game: If want to find the music, you find the record player in the sitting room because that’s where music is.
Why the focus on Julie, a character, rather than from their own first-person perspective?
In focus groups that I ran in my research, it was very clear that people with cognitive disabilities still want to be valued as someone who can help and give assistance. Some of the caregivers spoke very movingly about how even some of the most disabled people would go out of their way to help another person.
Everything is based on the sort of best practice thinking around person-centered care. They also will have an in-person companion — a caregiver or care companion who will talk to them and ask them about the choices they make in Deva World.
How do people with dementia who play in Deva World react?
The person with dementia will come up with their own stories. They’ll tack on something that will remind them of something, and then the care companion has to sort of draw that story out that’s part of the thing. A lot of interaction occurs. But if you just expect it to be like a video game where everything happens for you, it’s not so much like that. It’s more like a narrative, and you draw stories out as you move through and explore and navigate.
Are people, often older adults who might not have experience in online gaming or using a tablet, able to figure out the game?
The platform was co-designed with people who were receiving memory care. I worked with them to observe their interactions and see what kinds of interactions on the tablet were easy for them. Could they swipe? Or was it just tapping? Or could they zoom? And what kind of dexterity was required? And also what stimuli they responded to in terms of graphical design. Things that were too messy had to be simplified. Things that were too dark had to be lightened, colors had to be bright. All those sorts of design elements were determined after working with with people in assisted living and full-time memory care.
How can people play in Deva World?
Well, first, it’s on a touch screen tablet. It can be either an iOS or an Android-based tablet, any tablet. A caregiver should go to our website and join. The first month is free [after that, it’s $20 a month for individuals]. You will set up your profile there and then go to the App Store for an iPad or Google Play store for an Android or other tablets, and once you download, you are ready to begin exploring.
Shayla leads the editorial team and content strategy as the Director of Editorial and Content for Next Avenue at Twin Cities PBS. She has spent a career in digital media journalism and digital strategy at organizations including washingtonpost.com, Edmunds.com, Cars.com and Fast Horse, and worked as a consultant for several years. She also was a media professor at the University of Minnesota and DePaul University and has a Ph.D. in Mass Communication. She can be reached at firstname.lastname@example.org.@shayla_stern