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The video game that helped me understand my grandma's dementia

Dementia has a way of distancing you from the ones you love. A game called Before I Forget finally helped me see how truly crushing that divide can be.

Sebastien Bozon/AFP/Getty Images

When my friend Kenny's nana died of dementia, he'd already mourned her twice.

The first time, he was shopping for her birthday present. He'd settled on a watch, but didn't know what kind, what brand or how much he should spend.

He considered the expensive option, the watch he thought she deserved, but then he remembered: His nana had dementia. Usually she'd try and return presents, convinced others had left them behind.

In the aisle of the store Kenny fought back tears.

The second time Kenny mourned his nana, she was in a hospital bed. She heard a noise and asked, "Is that Kenny?" It wasn't. Kenny was sitting right in front of her. His nana no longer recognised him.

Almost everyone has a story about dementia. According to the World Health Organisation, 50 million people suffer from it globally.

The disease affects thinking, behaviour and the ability to perform everyday tasks as the brain atrophies. Damage usually starts in the hippocampus, but extends outward. To husbands, wives, sons, daughters. Grandchildren.

In February, my grandmother died of dementia. My experience was different than Kenny's. I felt little. I found it difficult to mourn.

But last weekend I played an early demo of Before I Forget, a PC game in development that put me in the shoes of a woman much like my own grandmother. A video game about a middle-aged woman suffering from early-onset dementia. A woman who gets lost in her own house. 

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Games, increasingly, are immersing players in real-life experiences like immigrationdepression and anxiety. Before I Forget is a game about the impact of lost memories. 

It opens in a house you don't recognise. A house that comes alive with detail as you explore. You pick up a photo, you remember. You hear music, you remember. A room that was drab, gray and anonymous bursts into life, transforming into a space that feels lived in. This is your home. A home with history.

3 Fold Games

Before I Forget is a delicate and unique exploration of dementia from a first-person perspective. It's also clinical and desperate.

Chella Ramanan and Claire Morley make up 3 Fold Games, the UK-based two-woman studio that created the game. With Before I Forget, both are determined to tell a story that honestly represents the crushing experience of dementia.

Before I Forget began two years ago at a Game Jam where developers create video games -- sketches really -- in short periods of time. Events like these usually have themes, and this Game Jam was about "borders".

Many at the event created games focused on refugee issues, but Ramanan came from left field. She tied "borders" to the concept of memories. Twenty-four hours later the core concept of Before I Forget had won an award. It was the game the audience most wanted to see fleshed out and completed.  

That's when Ramanan and Morley decided to make Before I Forget for real.

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If you asked me how I felt about my grandmother's death I couldn't tell you.

I live in Australia, my grandmother lived in Scotland where I grew up. In the years since her Alzheimer's diagnosis, I'd created a distance that spanned every possible dimension.

I last saw my grandmother a year before she died. She remembered me, but not my wife of 10 years. Or my two sons, aged 2 and 5, whom she'd met multiple times.

My grandmother used to clean and scrub with the verve of a woman possessed, power-walk at inhuman speeds. But in the years since her diagnosis that energy evaporated, replaced with an impenetrable emptiness that was difficult to traverse. I struggled. In her final years and in the immediate aftermath of her death, I don't recall mourning her.  

The last time I saw my grandmother she talked about the weather. Five minutes later she mentioned the weather again. With the exact same phrasing and intonation. Over and over. My polite responses became curt dismissals. Eventually I stopped answering. After an hour or two, I left the room.  

Later, when my mother called me to tell me she had passed away, I went through the motions of grief.

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3 Fold Games

Susan McCarthy assures me this is normal. She is general manager of services for Dementia Australia, an advocacy group dedicated to supporting those struggling with the disease. It's her job to help prepare people for dementia -- both the sufferers and those who care for them. She's seen it all. There can be grief at the diagnosis, grief if that person has to go into aged care. Grief at all possible stages.

Or no grief at all.

My grief didn't really appear until playing Before I Forget.

Maybe it was the shift in perspective. For years I'd considered my grandmother's illness only in terms of how it affected me. When a close relative withdraws and struggles to connect like they they once did, empathy can be difficult. At least it was for me. I pulled back, invented a distance. I made myself cold.

3 Fold Games

But here I was, experiencing dementia in real time. Grasping at memories and watching them fade. Remembering, then forgetting.

Remembering. Then forgetting.

Getting lost in my own house.

I'd forgotten that my grandmother was a person going through her own struggle. I'd forgotten that she had to watch as her own memories faded. I'd forgotten that people with dementia are also, in their own way, grieving.

"In the early stages they realise there's changes happening," McCarthy explains. "They know what's going on. They understand what's happening. They understand their relationships are changing."

It hit me. At one point my grandmother probably understood. She had to come to terms with her own illness. My grandmother spent her whole life helping others, she spent her prime years looking after her own mother. When people needed her she was there. I wasn't. When she got sick my response was to pull back, become resentful. The shame hit me like a sledgehammer.

She wasn't to blame.

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Eventually in Before I Forget, you find yourself oriented. You grasp at memories. What was once a blank, cold canvas of a house lights up with colour and music. Then you realise you need to use the toilet. Then you need to find the toilet.

You open a door, but that room is now a cupboard. You exit the cupboard but the house has shifted in ways you can't recognise. Doors that once led to bedrooms now lead to more cupboards. You become confused. Frantic. Angry.

Eventually you find the toilet, but it's too late.

For those with dementia, "it's something that happens," Ramanan says.

Wetting yourself isn't a common video game experience. Games are traditionally power fantasies, a medium in which players are the driving impetus. You solve problems, defeat monsters, save the day. Stripping back that power is, in some ways, a revolutionary act.

"One of the rules of game design is not confusing the player," Morley explains. "Confusion is one of those things you want to avoid generally.

"I've watched people play and get confused. Gamers like to complete everything. They think they've done it wrong or they've missed something. They get so confused and angry about it."

Which is, of course, perfect in a game that's simulating dementia.

"That's how you would feel. You would be angry."

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Dementia Australia has its own game, a VR simulation of dementia. It features a similar scenario: a dementia sufferer trying to find the toilet before it's too late.

It's less of a video game and more of an educational tool. Tanya Petrovic, a business development manager at Dementia Australia, calls it EDIE, short for Educational Dementia Interactive Experience. It's also the name of the character you play in the simulation.

EDIE has helped inspire empathy in potentially drained caregivers who have spent decades in the sector, but Dementia Australia has also used EDIE to inspire action in decision makers with the potential to transform the lives of sufferers of dementia.

"We are advocates and we want to change policy," Petrovic says. 

Members of Australia's parliament have played EDIE, as have people in the aged-care industry. Petrovic believes the game has helped change the conversation: "It forces us to ask: 'How can we make things better?'"

Ramanan and Morley aren't advocates. First and foremost they want to finish the game. Neither Ramanan nor Morley have the funds to work on it full time, and they don't have a publisher yet. 

Before I Forget isn't designed to lobby those in positions of power or change the world. It isn't even a video game designed to help people like me navigate their grief. It's just a story. One with the potential to resonate with anyone who's ever experienced dementia.

"We're just telling a story that we think is worth telling," Ramanan says. "All we can do is make this game as well as we can make it."

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I couldn't make my grandmother's funeral. With two young children and a full-time job it was too much to fly to the other side of the world at a moment's notice. But my mother did ask me to write something so it could be read out loud during the service.

I found memories difficult to retrieve. Again, I am told this is normal. When loved ones are diagnosed with dementia, the memories of those left behind are also fundamentally altered. It was difficult to recall the loving, energetic grandmother I grew up with.

But there was one memory. I couldn't tell if it was a single moment or a dozen seamlessly woven into the fabric of my brain. I'm 5 years old. My grandmother is in her fifties and still incredibly fit. We've just finished shopping at the grocery store and we're walking up the steepest hill in town, a walk she made every day. She has two heavy shopping bags in each hand. She isn't even breathing heavily. She's amazing.

I walk as fast as I can, but I can't keep up. She stops, smiles, gives me all the time I need. She was always one step ahead. 

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