Hacking Memories: The Journey to Findging Suitable Technology for Dementia Patients

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Photo illustration created by Andrea Vacl.

Bea Kraayenhoff arrived late. She rolled her walker to the side and sat on the tall chair at the front of the room. She choked back emotion in her voice as she recounted losing her driver’s licence due to her dementia and how she relies on others for transportation, making going anywhere a challenge—including arriving at the Hackathon.
Dementia is a general term for a number of conditions where mental ability, including memory, declines to a point where it interferes with everyday function. This makes it very difficult, if not impossible, to be independent or social.
“How do I develop a relationship? That’s why social media is so important for people like us,” said Kraayenhoff who now spends a few hours a day with her iPad on Facebook to avoid isolation from loved ones.
Her ipad is like a social lifeline, connecting her with her four children and nine grandchildren who live in different cities. She has a button-by-button instruction guide on a piece of paper explaining how to log in, which through repetition allows her to navigate Facebook independently.

But one day, as Facebook normally does, they updated their website, completely changing the interface, and turning Kraayenhoff’s lifeline in to un-navigateable territory.
“Something that is becoming troublesome is these automatic updates,” says Eva Svoboda, a clinical neuropsychologist at Baycrest Health Sciences, who specializes in using technology to assist those living with severe amnesia. “For healthy people… often times it’s like ‘Awesome an upgrade! It’s better.’ But for patients that can be stressful so suddenly. Like, their entire system is all different and they can’t use it properly.”
Kraayenhoff isn’t alone in this experience.
There were an estimated 747,000 Canadians living with some form of cognitive impairment or dementia in 2011 according to the Alzheimer Society of Canada, with that number expected to rise to 1.4 million in 2031. That quantity of patients cost the Canadian economy 33 billion dollars in 2012. Those numbers are expected rise sharply over the coming years as the population ages.

Despite the fact that dementia is a huge and growing issue, many patients face a lack of availability in suitable technology to help them with the issues they face.
“You realize that our population is getting older faster, that our populations are living longer,” says Shaharris Beh, the CEO of HackerNest. “This is a global epidemic. It’s only going to get worse if we do not do things to mitigate it.”
After being approached by the British consulate, Beh organized DementiaHack, a hackaton to create technology revolving around dementia, which launched in 2014. Kraayenhoff spoke at the 2014 hackaton and also the hackathon the following year (DementiaHack 2015), also organized by Beh, at George Brown College.
According to Beh, Dementiahack’s aim is to mitigate stigmas surrounding dementia, change society and culture to be more caring of its elderly populations, as well as getting young creators collaborating to make useful tools for seniors.
“People 65 plus are not exactly the sexiest demographic to build for,” says Beh. “People don’t clamour and say ‘Hey I really want to develop products for seniors.’ No. It’s usually the teens, the tweens, the young up-and-coming professional-types. That’s who most people build products for.”
This helps explain the gap in products tailored for seniors and those with cognitive impairment, and yet technology holds quick disruptive power to make people’s lives easier. However, research innovations don’t seem to reflect that notion.
“There’s plenty of research into the biomechanics of dementia, into disease modifying therapies that really won’t be realized for probably a decade or more,” says John Preece, the science and innovation officer at the British Consulate in Toronto, who first approached Beh with the idea for DementiaHack. “With tech we can improve quality of life within a matter of months and so it was my number one hope that something would come out that would make a difference.”
But the people involved in DementiaHack aren’t the only ones with the same goal.
Svoboda is currently part of a collaborative and multidisciplinary group project at Baycrest Health Sciences to create apps to help with patients with memory impairments. Kenneth Shinozuka, a 16 year old from New York, has created a sensor-sock prototype which connects to a smartphone app, alerting care givers whenever a patient gets out of bed at night. He originally created it for his grandfather who has Alzheimer’s but has gone on to test it at several residential care facilities to turn it in to a marketable product.

“One thing I’ll never forget is when my device first caught my grandfather’s wandering out of bed at night,” said Shinozuka at TEDYouth. “At that moment, I was really struck by the power of technology to change lives for the better.”