ITAMI, Japan – In the early 70s, Koji Uchida started to disappear.
For the first time, police found him sitting in front of a vending machine 17 miles from his home. He began to go missing frequently, once wandering for two days before arriving at a stranger’s apartment, hungry and barely able to remember the person’s name, his mind hazy with amnesia.
Not knowing what to do, his family asked the local government to put Mr. Uchida under digital surveillance.
In Itami, a suburb of Osaka where the Uchida family lives, more than 1,000 sensors line the streets, each decorated with a smiling cartoon marked with Wi-Fi squares. When Mr. Uchida was out walking, the system recorded his location via a beacon hidden in his wallet and sent his family a steady stream of alerts. When he goes astray, his family can easily find him.
Itami is one of several localities that have turned to electronic tracking as Japan, the world’s grayest country, faces a pandemic of dementia. The programs make the promise of protecting people with cognitive impairment while helping them retain some independence, but they also evoke fear of Orwellian overreach.
Japan’s surveillance efforts raise conundrums facing countries across the globe as their populations age rapidly: how to manage the massive costs of care for those live longer, as well as social costs for family and other loved ones.
The Japanese government considers this mission vital to the future stability of the country, projecting fundamental changes to nearly every aspect of society, including education, care health and even, as in Itami, infrastructure.
The surveillance system there is one of the more extreme examples of this adaptation. Advocates for people with dementia, including some with the condition, have raised serious concerns about digital tracking, warning that the convenience and peace of mind offered by monitoring. surveillance can threaten the dignity and freedom of those being watched.
Surveillance of older adults has raised questions of deeper consent as electronic surveillance systems have become a worldwide fixture, widely adopted in even rich nations. yes, open like the US and UK and in authoritarian countries like China.
The Japanese are very protective of their personal privacy, and many cities 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, research leader at the Tokyo Dementia Care Research and Training Center. , said.
She sees promise in apps that give users more freedom by reducing their fear that they’ll get lost. But she worries the systems will “be used only as tools to deal with the ‘problem’ people – anyone who has become a burden to families or officials.
As the country with the oldest population in the world, Japan is most vulnerable to the ravages of dementia: memory loss, confusion, slow physical decline and, most heartbreakingly, disintegration. irresistible self and relationships with others.
Japan has the highest rate of dementia in the world, at about 4.3% of the population. follow according to estimates by the Organization for Economic Cooperation and Development. A 2012 Japanese government study found that more than 4.62 million residents have dementia, and some researchers estimate that a quarter of Japan’s population will have it by 2045.
Dementia is the leading cause of disappearances in Japan. More than 17,000 people with dementia went missing in 2020, up from 9,600 in 2012, official figures for the first year were reported.
That year, the government enacted its first national dementia policy, and since then, the government has struggled with developing a regulatory framework to better accommodate people with dementia. this disease.
One major result has been an increasing focus on helping people with dementia “get old” – rather than sending them to nursing homes – in the hope of improving their quality of life and reducing overburdened care facilities.
But home dementia care can be a major cause of anxiety for caregivers and those with cognitive impairment. Although many localities in Japan offer daycare for adults, it can be expensive and leaves a gap in supervision for those who are most likely to wander.
National policies and messages about supporting people with dementia often conflict with societal expectations and local government behavior. Families sometimes hide people with dementia for fear that erratic behavior may attract social stigma or inconvenience the community. For those who wander more than once, the police can pressure their families to keep them at home or keep a close eye on their movements.
In 2007, a 91-year-old man with dementia wandered from his home in central Japan and was hit and killed by a train. Its operator sued his grieving family for damages arising from delays in service, and a regional court ruled in the company’s favor. The decision was overturned on appeal, but damages were done to families worried that a slippage could be ruined.
Miki Sato, 46, who was diagnosed with dementia at the age of 43 and is an employee of a company that provides work opportunities for people with the condition that has improved over the past decade . But there is still a tendency to put the needs of the family above the needs of the individual, she said.
People with dementia “want to be trusted”, she said, adding: “The number of people who want to use these GPS tracking devices is quite low compared to the number of people who are allowed to use them.”
For Ms Sato, who helped develop a location-tracking app to assist people with dementia as they shop for groceries, “the most important thing is that it’s the person’s choice.” .
However, her fear of getting lost is real: On bad days, train stations and street names blend together, and the address dances in her memory.
“As my symptoms increased, I could imagine I could use them on my own,” she said of the tracking system.
As people with dementia disappear, most Japanese communities still take the same approach to finding them. Volunteer search teams were activated and authorities broadcast announcements on local radio stations or on public address systems in most neighborhoods.
Some localities have turned to low-tech solutions, such as key chains with instructions on how to help those who are missing. But as more and more people with dementia live at home, digital solutions become even more appealing.
Those range from more intrusive, such as security cameras and tracking devices that can be slipped into shoes, to more passive options like QR codes that can stick to your fingernails and alerts. caregiver when scanned.
Although localities and companies have invested heavily in developing and promoting programs, they are still used sparingly, in part because of ethical concerns.
In particular, the issue of informed consent is a complex one, especially in situations where it is difficult to assess whether a person with dementia is likely to give consent.
The system registration process is usually initiated by carers and is a last resort. Medical professionals then evaluate potential surveillance candidates. They are not required to notify individuals.
Take, for example, the city of Takasaki in central Japan, which introduced its own GPS tracking system in 2015. Like their colleagues in Itami, caregivers there may be unilaterally divided. Share photos of their wards and allow police access to their location data.
Itami’s mayor, Yasuyuki Fujiwara, said that when he first proposed a surveillance program, he was “worried about the perception that we would spy on private citizens”.
Mr. Fujiwara initially expressed the idea as a tool to prevent crime and keep an eye on children while they go to school. Before long, cameras began to appear all over the city, their locations chosen with public comment. In 2015, the city opened a program for elderly families on the street.
The cameras themselves don’t track people. They are equipped with receivers that communicate with small beacons carried by those enrolled in the program. When a beacon carrier passes by, the device records their location and sends it to a smartphone app that an authorized caregiver can check.
Mr. Fujiwara assures that only the family can see the data. However, only 190 older adults used the program last year, while nearly half of the city’s 200,000 primary school students signed up.
Mr. Uchida’s son, Shintaro, who works in the town hall, signed a contract with his father in 2019. (His family agreed to discuss Mr. Uchida’s experience so that the public can understand more about dementia. mind).
His father was a proud man and believed in keeping busy. After retiring, he immediately took another job. However, in the early 70s, he started having trouble driving. His memory fades.
Mr. Uchida, 78 years old, has lived for decades in Itami, raising a family and working at a printing company. But when he went for a daily walk, the street was no longer familiar. In a month, Mr. Uchida disappeared three times, his wife, Keiko, said. The tracking program helped slow his wandering, but failed to stop it.
In March, his family reluctantly placed him in a nursing facility.
His beacon is currently in his house, indicating only his absence.
https://www.nytimes.com/2022/02/02/business/japan-elderly-surveillance.html Where thousands of digital eyes are always watching the elderly