Where a thousand digital eyes watch over the elderly

ITAMI, Japan – In the early 1970s, Koji Uchida began to disappear.

The first time, the police found him sitting in front of a vending machine 27 km from his home. He began to disappear regularly, once wandering around for two days before showing up at a stranger’s apartment, starving and barely able to remember his name, his mind clouded with dementia.

Not knowing what to do, his family asked the local government to put Mr. Uchida under digital surveillance.

In Itami, the Osaka suburb where Mr. Uchida’s family lives, more than 1,000 sensors line the streets, with each unit sporting a smiling cartoon character surrounded by Wi-Fi squiggles. When Mr. Uchida went out for a walk , the system recorded his location through a beacon hidden in his wallet and sent his family a constant stream of alerts. When he veered off course, the family was able to easily find him.

Itami is one of many localities that have turned to electronic tracking as Japan, the world’s grayest country, faces a dementia epidemic. The programs offer the promise of protecting people with cognitive decline while helping them retain some independence, but they have also evoked fears of Orwellian overshoot.

Japan’s surveillance efforts portend the conundrums facing countries around the world as their populations rapidly age: how to manage the huge care expenditures for people who are living increasingly longer, as well as the social costs for families. and other relatives.

The Japanese government sees the task as essential to the country’s future stability, envisioning fundamental changes in almost every aspect of society, including education, healthcare and even, as in Itami, infrastructure.

The surveillance system there is one of the most extreme examples of this adaptation. Advocates for people with dementia, including some with the disease itself, have expressed serious concerns about digital tracking, warning that the convenience and peace of mind offered by monitoring could threaten the dignity and freedom of people. people under surveillance.

Surveillance of the elderly has deepened issues of consent as electronic monitoring systems have become a staple around the world, widely applied both in wealthy and open countries like the United States and Britain and in authoritarian countries like China.

The Japanese are intensely protective of their privacy, and many municipalities have adopted less intrusive forms of electronic tracking. As with any tool, the value of Japanese systems will ultimately be determined by how they are used, said Kumiko Nagata, senior researcher at the Tokyo Dementia Care Research and Training Center.

She sees promise in apps that give users more freedom by alleviating fears they’ll get lost. But she fears the systems are being “used as tools to deal with ‘problem’ people” – anyone who has become a burden on a family or public officials.

As the nation with the oldest population in the world, Japan is most vulnerable to the ravages of dementia: memory loss, confusion, slow physical decline and, most heartbreaking, the inescapable dissolution of self and relationships with others. others.

Japan has the highest proportion of people with dementia in the world, around 4.3% of the population, according to an estimate by the Organization for Economic Co-operation and Development. A 2012 Japanese government study found more than 4.62 million people with dementia, and some researchers estimate that a quarter of Japan’s population will have the disease by 2045.

Dementia is the leading cause of missing persons cases in Japan. More than 17,000 people with dementia disappeared in 2020, compared to 9,600 in 2012, the first year official data was released.

That year, the government published its first national dementia policy, and since then it has worked to put in place a legal framework to better accommodate people with the disease.

One of the main results has been an increased focus on helping people with dementia to “age in place” – instead of sending them to nursing homes – in hopes of improving their quality of life. life and reduce the burden on overburdened healthcare facilities.

But home care for people with dementia can be a major source of anxiety for caregivers and people with cognitive decline. While many localities in Japan offer adult day care, it can be expensive and leave gaps in supervision for those most likely to wander.

National policies and messages on welcoming people with dementia are often in conflict with social expectations and the behavior of local authorities. Families sometimes hide people with dementia, fearing that erratic behavior will attract social stigma or embarrass the community. For those who repeatedly wander, police may pressure families to keep them at home or closely monitor their movements.

In 2007, a 91-year-old man with dementia wandered away from his home in central Japan and was hit and killed by a train. His operator sued his grieving family for damages resulting from the service delay, and a regional court ruled in the company’s favor. The decision was overturned on appeal, but the damage was done for families who feared a mistake would be ruinous.

Public perception of people with dementia has improved over the past decade, said Miki Sato, 46, who was diagnosed with dementia aged 43 and runs a company that offers job opportunities to other people with the disease. But there is still a tendency to put the needs of families before those of individuals, she said.

People with dementia ‘want to be trusted’, she said, adding: ‘The number of people who want to use these GPS trackers is quite small compared to the number of people who are forced to use them. .”

For Ms Sato, who helped develop a location-tracking app to help people with dementia shop, “the most important thing is that it’s that person’s choice.”

However, his fear of getting lost is very real: the bad days, the stations and the names of the streets merge, and the addresses dance in the confines of his memory.

“As my symptoms progress, I can imagine that I could use them myself,” she said of the tracking systems.

When people with dementia go missing, most Japanese communities still take an analog approach to finding them. Volunteer search teams are activated and authorities broadcast alerts on local radio stations or public address systems found in most neighborhoods.

Some localities have turned to low-tech solutions, such as key fobs with instructions on how to help those who are lost. But as more and more people with dementia live at home, digital solutions have become more alluring.

These range from the more intrusive, such as security cameras and tracking devices that can be slipped into a shoe, to more passive options like QR codes that can go on a fingernail and alert caregivers when they are scanned.

Although localities and businesses have made significant investments in developing and promoting the programs, they remain underutilized, in part due to ethical concerns.

The issue of informed consent in particular is tricky, especially in cases where it can be difficult to assess whether a person with dementia is capable of giving it.

The system enrollment process is usually initiated by caregivers, and only as a last resort. Healthcare professionals then assess potential candidates for surveillance. They are not required to inform the persons themselves.

Take, for example, the city of Takasaki in central Japan, which introduced its own GPS tracking system in 2015. Much like their peers in Itami, caregivers can unilaterally share photos of their wards and authorize the police to access their location. The data.

Itami Mayor Yasuyuki Fujiwara said when he first proposed a surveillance program he was “worried about the perception that we would be spying on private citizens”.

Mr Fujiwara first pitched the idea as a tool to stop crime and keep an eye on children as they walk to school. Before long, cameras began popping up all over town, their locations chosen with public comment. In 2015, the city opened the program to elderly families prone to wandering.

The cameras themselves don’t track people. They are equipped with receivers that communicate with small beacons worn by program registrants. As tag bearers pass by, the device records their location and sends it to a smartphone app that an authorized caregiver can verify.

Mr Fujiwara assured that the data could only be viewed by the family. Yet only 190 seniors used the program last year, when nearly half of all primary school students in the city of 200,000 were enrolled.

Mr. Uchida’s son, Shintaro, who works at the town hall, registered his father in 2019. (His family agreed to discuss Mr. Uchida’s experience to increase public understanding of dementia.)

His father was a proud man who believed in keeping busy. After retiring, he immediately got another job. In the early 1970s, however, he began to have trouble driving. His memory faded.

Mr. Uchida, now 78, had spent decades in Itami, raising his family and working in a printing company. But when he went for his daily walks, the streets were unfamiliar to him. For a month, Mr. Uchida disappeared three times, his wife, Keiko, said. The tracking program helped slow his wandering, but could not stop him.

In March, his family reluctantly placed him in a nursing facility.

His beacon is now in his house, indicating only his absence.

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