My reply said: In some ways my first though was that I do not know that I want to spend a lot of time in Jean's (is that her name) world as my world has been immersed in Dementia/Alzheimer's for the last 12 years with Gregory.
But my second thought is that it will be interesting to see what they have done with it and wonder if it can be used to help people about to be or not affected by Dementia an idea of what it FEELS like!
I will report back on that but meanwhile here is a copy of the New York Times article to which he referred me.
Ether One: The Video Game That Tries to Simulate Dementia
BY MICHAEL THOMSE
Ether One, a first-person puzzle game made by a six-person team at White Paper Games, in Manchester, England, is about the slow dissolution of the brain. The game casts the player as an employee of a futuristic memory-retrieval company called the Ether Institute of Telepathic Medicine. Your job is to dive into the mind of Jean Thompson, a sixty-nine-year-old woman diagnosed with dementia, and retrieve a series of lost memories. Using scans of the woman’s brain, the Ether Institute reconstructs 3-D simulations of what remains of her memory. Players must reassemble the story of her life using the oddly alien artifacts (the symbolic significance and basic operation of which remain a mystery) left behind in the fraying simulation of her past home and work places.
“Our main goal was to tell a story that we could invest ourselves in,” Pete Bottomley, a designer and the co-founder of White Paper Games, told me. “That’s the only way we knew we could create something really interesting.” Because everyone on the team had some experience in dealing with dementia patients, it felt like an ideal subject, something everyone could personally invest in. “If someone looked at a part of the game they hadn’t seen recently and some aspect of it didn’t seem credible they’d be able to say something immediately,” Bottomley said. Such open communication is an organizational rarity in an industry that’s usually focused on departmental specialization.
Making games about illness can be especially difficult. Unlike cinema or prose, games are closed systems that must establish the basic laws of the invented universe before presenting their metaphors and signifiers. As a result,they are often both literal and fantastical. Films or novels can narrow in on their subjects because the people who make them don’t need to reinvent grammar and the alphabet with every new work: a book can simply describe how an apple pie gets made; a video game must model the underlying principles of chemistry, botany, and gastronomy that make the creation of a digital pie systemically possible. Playing fast and loose with the laws of physics for Super Mario is forgivable, but systematizing dementia and Alzheimer’s runs the risk of alienating audiences by oversimplifying for the sake of drama, or by overstating how much is known about the diseases.
In other words, there are many reasons Ether One shouldn’t work. And yet, in many ways, it does. In part, this is because dementia affects how a person experiences the world, and game systems can also be read as inherently subjective—they don’t necessarily reflect a concrete truth but model an idealized state that can be traced back to a peculiar point of view. SimCity is not about urban planning, for instance, but about a specifically neoliberal approach to urbanity in which automobiles, electricity, and industry are treated as synonymous with progress, allowing players to chose how they want traffic and power plants to operate but never allowing for alternatives to those systems.
In Ether One, systemic biases that point back out of the game world became an operating metaphor for the bewilderment of dementia and its dependence on how a person perceives the whole world. “All the gameplay mechanics were designed around dementia symptoms,” Bottomley said. “We knew that in, order to create a story that depicted dementia, everything had to tie closely into that.”
Ether One is built around a central control room from which players access the four main areas of Jean’s past—a seaside town in England, an industrial mine, a processing factory, and a lighthouse overlooking the ocean. Each area is filled with hundreds of tchotchkes, mementos, and mundanities that could hold some long-forgotten significance. Players are asked to “collect” the memories and are limited to carrying only one object at a time. At any point in the gameplay, they can instantaneously teleport back to the control room, which is lined with empty shelves to hold anything they collect. As a player, you’re never sure what’s important and what isn’t, so the system encourages you to take everything.
This hoarding is repaid with periodic puzzles, such as a door with a numeric lock whose code can be found on the bottom of a previously collected mug. As the game progresses, these puzzles increase in complexity, as does the array of random objects filling the shelves. The collection gradually overwhelms the player’s ability to remember just where all of these things came from and why they seemed important enough to retrieve. Why did I bring this plate all the way back here? Whose hat is this supposed to be again? It’s a tidy simulation of the cognitive degradation of dementia.
Yet systematizing dementia in this way, poetic though it is, risks oversimplifying it. “There’s an expression: if you’ve seen one Alzheimer’s patient, you’ve seen one Alzheimer’s patient,” James Galvin, a doctor and researcher at NYU Langone Medical Center’s Alzheimer’s Disease Center, told me.“The experience of each individual is so unique and personal, there really would be no way to experience what that person’s going through.”
“Most patients have a number of lucid intervals that come and go—it’s not like they live in a fantasy world,” Galvin said. “That’s not the disease. They have a progressive change in their cognition and have difficulty coping and surviving independently. If you can’t remember how to do anything, it’s very difficult to live alone. But that doesn’t mean they’re living in some fantasy world running through a jungle and carrying a lantern. I don’t think this is at all experiential of what most patients go through, and if you did find one it would just be that one of the millions of people who have it.”
One of the characteristics of Alzheimer’s and dementia is a loss of self-awareness, which is called anosognosia. “People who actually have a memory problem are usually not aware they have a memory problem,” Galvin told me. “If you talk to them they’ll admit that things aren’t going as well as they used to, but they don’t have a lot of insight into their own problems.”
This poses a fundamental problem to attempts at representing dementia through game design. Games depend on their players having some minimum degree of self-awareness about their character and the rules governing the play world. “I think this is a situation where you have to balance design and narrative carefully so that one doesn’t break the other,” Bottomley said. “Narratively, it would have been great to see puzzles crumbling around you as the mind got worse throughout. However, it wouldn’t be fair on the player to spend hours solving puzzles if one could break at any time—especially if you part solved it then came back to a broken puzzle later on.”
If a game is going to be a game, in the sense of a progressive series of challenges leading to a definite end state, it can’t represent dementia or Alzheimer’s with anything other than a self-conscious artifice. We’re used to suspending some disbelief to enjoy shooting games, but it feels like bad faith to say that a disease should be the basis of a similar kind of entertainment. Our desire to entertain ourselves within systems that make triviality and tragedy indistinguishable says more about us than the depicted subjects. If violent war games are driven by delusional power fantasies, then empathy games are driven by a parallel delusion about how caring we are in reality.
“Our aim was to create an empathetic story but it wasn’t necessarily to raise awareness about dementia,” Bottomley said. “Most people know what dementia is—they just find it hard to talk about, especially if someone close to them suffers from it. The main thing we wanted to achieve was to open the conversation about dementia and put you in the shoes of someone suffering with it.” At their core, games are abstract informants against our communal shortcomings, systems that model our frailest qualities in a subconscious effort to dispel them, to imagine a world where they might surpassed.
My grandmother died almost two years ago after suffering from Alzheimer’s and dementia—forgetting names, places, and times, becoming confused mid-meal about why there was suddenly a plate before her and a fork in her hand. Everyone puts on a show at this stage. She spent her last years in a nursing home—a serene modernist building in a small Danish village, where thatched-roof cottages sat alongside a garish chain supermarket. Her room was a gray box filled with as much of her old furniture as would fit. I’d sit with her and say the same things over and over. Two minutes into dinner she’d forget why there was a plate of food in front of her and ask me if I didn’t want to eat her share of potatoes. When my mother got up to boil water in the small kitchenette, she’d lean in to me and ask in an embarrassed whisper who that woman in the kitchen was, pointing at her oldest daughter. There was little to do in those moments but try to keep her mind moving forward toward some happier horizon.
Before we’d leave her for the night, we’d put her in bed and pull the sheets up around her. There was always some muted blue light still in the summer sky, which made bedtime feel premature. My mother would hold her mother’s hand for a few minutes just as she’d done with me when I was a child. She’d tell my grandmother about all the plans for tomorrow: who was coming to visit, what time they would be there, what was coming up on the menu. My grandma laughed about it all, as if the names tickled a little just before disappearing, relieved at the reminder of a program out there somewhere, even if she couldn’t explain what was behind it.
Ether One, a first-person puzzle game made by a six-person team at White Paper Games, in Manchester, England, is about the slow dissolution of the brain. The game casts the player as an employee of a futuristic memory-retrieval company called the Ether Institute of Telepathic Medicine. Your job is to dive into the mind of Jean Thompson, a sixty-nine-year-old woman diagnosed with dementia, and retrieve a series of lost memories. Using scans of the woman’s brain, the Ether Institute reconstructs 3-D simulations of what remains of her memory. Players must reassemble the story of her life using the oddly alien artifacts (the symbolic significance and basic operation of which remain a mystery) left behind in the fraying simulation of her past home and work places.
“Our main goal was to tell a story that we could invest ourselves in,” Pete Bottomley, a designer and the co-founder of White Paper Games, told me. “That’s the only way we knew we could create something really interesting.” Because everyone on the team had some experience in dealing with dementia patients, it felt like an ideal subject, something everyone could personally invest in. “If someone looked at a part of the game they hadn’t seen recently and some aspect of it didn’t seem credible they’d be able to say something immediately,” Bottomley said. Such open communication is an organizational rarity in an industry that’s usually focused on departmental specialization.
Making games about illness can be especially difficult. Unlike cinema or prose, games are closed systems that must establish the basic laws of the invented universe before presenting their metaphors and signifiers. As a result,they are often both literal and fantastical. Films or novels can narrow in on their subjects because the people who make them don’t need to reinvent grammar and the alphabet with every new work: a book can simply describe how an apple pie gets made; a video game must model the underlying principles of chemistry, botany, and gastronomy that make the creation of a digital pie systemically possible. Playing fast and loose with the laws of physics for Super Mario is forgivable, but systematizing dementia and Alzheimer’s runs the risk of alienating audiences by oversimplifying for the sake of drama, or by overstating how much is known about the diseases.
In other words, there are many reasons Ether One shouldn’t work. And yet, in many ways, it does. In part, this is because dementia affects how a person experiences the world, and game systems can also be read as inherently subjective—they don’t necessarily reflect a concrete truth but model an idealized state that can be traced back to a peculiar point of view. SimCity is not about urban planning, for instance, but about a specifically neoliberal approach to urbanity in which automobiles, electricity, and industry are treated as synonymous with progress, allowing players to chose how they want traffic and power plants to operate but never allowing for alternatives to those systems.
In Ether One, systemic biases that point back out of the game world became an operating metaphor for the bewilderment of dementia and its dependence on how a person perceives the whole world. “All the gameplay mechanics were designed around dementia symptoms,” Bottomley said. “We knew that in, order to create a story that depicted dementia, everything had to tie closely into that.”
Ether One is built around a central control room from which players access the four main areas of Jean’s past—a seaside town in England, an industrial mine, a processing factory, and a lighthouse overlooking the ocean. Each area is filled with hundreds of tchotchkes, mementos, and mundanities that could hold some long-forgotten significance. Players are asked to “collect” the memories and are limited to carrying only one object at a time. At any point in the gameplay, they can instantaneously teleport back to the control room, which is lined with empty shelves to hold anything they collect. As a player, you’re never sure what’s important and what isn’t, so the system encourages you to take everything.
This hoarding is repaid with periodic puzzles, such as a door with a numeric lock whose code can be found on the bottom of a previously collected mug. As the game progresses, these puzzles increase in complexity, as does the array of random objects filling the shelves. The collection gradually overwhelms the player’s ability to remember just where all of these things came from and why they seemed important enough to retrieve. Why did I bring this plate all the way back here? Whose hat is this supposed to be again? It’s a tidy simulation of the cognitive degradation of dementia.
Yet systematizing dementia in this way, poetic though it is, risks oversimplifying it. “There’s an expression: if you’ve seen one Alzheimer’s patient, you’ve seen one Alzheimer’s patient,” James Galvin, a doctor and researcher at NYU Langone Medical Center’s Alzheimer’s Disease Center, told me.“The experience of each individual is so unique and personal, there really would be no way to experience what that person’s going through.”
“Most patients have a number of lucid intervals that come and go—it’s not like they live in a fantasy world,” Galvin said. “That’s not the disease. They have a progressive change in their cognition and have difficulty coping and surviving independently. If you can’t remember how to do anything, it’s very difficult to live alone. But that doesn’t mean they’re living in some fantasy world running through a jungle and carrying a lantern. I don’t think this is at all experiential of what most patients go through, and if you did find one it would just be that one of the millions of people who have it.”
One of the characteristics of Alzheimer’s and dementia is a loss of self-awareness, which is called anosognosia. “People who actually have a memory problem are usually not aware they have a memory problem,” Galvin told me. “If you talk to them they’ll admit that things aren’t going as well as they used to, but they don’t have a lot of insight into their own problems.”
This poses a fundamental problem to attempts at representing dementia through game design. Games depend on their players having some minimum degree of self-awareness about their character and the rules governing the play world. “I think this is a situation where you have to balance design and narrative carefully so that one doesn’t break the other,” Bottomley said. “Narratively, it would have been great to see puzzles crumbling around you as the mind got worse throughout. However, it wouldn’t be fair on the player to spend hours solving puzzles if one could break at any time—especially if you part solved it then came back to a broken puzzle later on.”
If a game is going to be a game, in the sense of a progressive series of challenges leading to a definite end state, it can’t represent dementia or Alzheimer’s with anything other than a self-conscious artifice. We’re used to suspending some disbelief to enjoy shooting games, but it feels like bad faith to say that a disease should be the basis of a similar kind of entertainment. Our desire to entertain ourselves within systems that make triviality and tragedy indistinguishable says more about us than the depicted subjects. If violent war games are driven by delusional power fantasies, then empathy games are driven by a parallel delusion about how caring we are in reality.
“Our aim was to create an empathetic story but it wasn’t necessarily to raise awareness about dementia,” Bottomley said. “Most people know what dementia is—they just find it hard to talk about, especially if someone close to them suffers from it. The main thing we wanted to achieve was to open the conversation about dementia and put you in the shoes of someone suffering with it.” At their core, games are abstract informants against our communal shortcomings, systems that model our frailest qualities in a subconscious effort to dispel them, to imagine a world where they might surpassed.
My grandmother died almost two years ago after suffering from Alzheimer’s and dementia—forgetting names, places, and times, becoming confused mid-meal about why there was suddenly a plate before her and a fork in her hand. Everyone puts on a show at this stage. She spent her last years in a nursing home—a serene modernist building in a small Danish village, where thatched-roof cottages sat alongside a garish chain supermarket. Her room was a gray box filled with as much of her old furniture as would fit. I’d sit with her and say the same things over and over. Two minutes into dinner she’d forget why there was a plate of food in front of her and ask me if I didn’t want to eat her share of potatoes. When my mother got up to boil water in the small kitchenette, she’d lean in to me and ask in an embarrassed whisper who that woman in the kitchen was, pointing at her oldest daughter. There was little to do in those moments but try to keep her mind moving forward toward some happier horizon.
Before we’d leave her for the night, we’d put her in bed and pull the sheets up around her. There was always some muted blue light still in the summer sky, which made bedtime feel premature. My mother would hold her mother’s hand for a few minutes just as she’d done with me when I was a child. She’d tell my grandmother about all the plans for tomorrow: who was coming to visit, what time they would be there, what was coming up on the menu. My grandma laughed about it all, as if the names tickled a little just before disappearing, relieved at the reminder of a program out there somewhere, even if she couldn’t explain what was behind it.
Playing Ether One, I can’t say I felt any new illuminations about the disease. Most of the things I watched my grandmother go through were missing in its simulation, but I was reminded of the helplessness I felt. After solving the first few puzzles in Ether One, I realized that I’d been storing way too many items back in the hub world. It reminded me of my grandmother’s stuffed bookshelves in her nursing home room—old books, half-used perfume bottles, porcelain ferrets, a piece of Bohemian glass I’d given her once—we’d kept as much as we could when she moved in, trying to guess what might mean something to her and what might be lost for good. If video games indulge in a fantasy of objects—swords, spaceships, and the like—it’s one that’s hard to translate into a room filled with forgotten things. In Ether One, I found that the distance between these seemingly incompatible worlds lessened just a little. Even though I couldn’t quite forget myself inside its artifice, it was comforting to have the space to try.
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