TOKYO — Aeon is Japan’s version of Loblaws, but on steroids, with more than 18,700 supermarkets and stores. Two years ago, when Aeon opened its flagship mall, some 1,000 employees showed up for the enthusiastic “opening ceremony.”
The full-day event opened with an unusual lesson.
“We learned how to react to people who might have dementia,” recalls Shoko Koizumi, a customer service manager.
Since 2007, the Asian retail juggernaut has been training its 400,000 “Aeon people” in Japan to deal with dementia.
The retailer is just one player in a vast and ever-growing network. Japan calls it the Dementia Supporter Caravan and it has 6.1 million members — an army scattered across the country ready and willing to support people whose fading cognitive abilities have left them struggling to support themselves.
The goal of the Dementia Supporter Caravan is to rebuild society into one that understands the disease and helps.
It is a simple but big idea that has inspired knockoffs around the world, including in Canada, where the federal government and the Alzheimer Society of Canada launched its “Dementia Friends” campaign this summer. The Canadian campaign is a scaled-down version, however, asking participants to watch an online video and “commit to action,” with more than 14,500 people registered so far.
The idea started with a single person.
In 2005, Hiroko Sugawara was editing a magazine about seniors’ issues and found herself increasingly interested — and worried about Japan’s ballooning dementia rates.
At the same time, Japan’s traditional social fabric was unravelling. birth rates were plummeting, Japanese families were shrinking, and more elderly people were living alone.
“Their families can’t help them,” said Sugawara, speaking through a translator. “So I had the idea that I wanted all of Japanese society to help.”
Her plan was an educational pyramid scheme, where the buy-in isn’t cash but a commitment to learn about the disease and pay it forward.
The peak of the pyramid is Sugawara and her team of three. They travel Japan spreading the word and teaching companies, municipalities and large organizations.
The next level down are the “caravan mates” — people who work at these companies and are trained to be trainers. They then go on to educate people who occupy the base of the pyramid: co-workers, volunteers, schoolchildren and just about anyone else willing to read the 30-page textbook and sit through a 90-minute training session.
Their assignment: to take an action, big or small, and support someone with dementia.
In its first year, more than 12,000 people joined the Dementia Supporter Caravan. The Japanese government thinks it can hit 8 million by the end of 2017.
But is it working? The question is difficult to answer because the initiative isn’t being formally evaluated, says Mayumi Hayashi, a research fellow with the Institute of Gerontology at King’s College London.
“In European countries ... everything becomes evaluated and monitored. But in Japan, they tried something quite different,” Hayashi says. “The government doesn’t focus on evaluation or evidence, so they encourage experimentation and let communities do whatever they think is good.”
Sugawara hears success stories every day. A garbage collector who notices when an old woman no longer remembers which day to put out her recycling. The bank teller who understands why her customer has returned for a third time in one day. Koizumi, the Aeon employee, who recognized the symptoms in a customer who reported a missing wallet and called his family — who had been looking for him since he rode off on a bicycle.
Last year, 10,738 people confirmed or suspected with dementia went missing across Japan (most were eventually found). But in the southern city of Kikuchi, no wanderers have gone missing since 2005, according to Sugawara — the year Dementia Supporter Caravan launched.
Wanderers often go missing in the night. Supporters in Kikuchi recruited people and businesses working the graveyard shift to become eyes and ears; when someone goes missing, the network is activated.
“The most important idea is to make a community where people with dementia can live peacefully and they have safety nets all around,” Sugawara says.
Success stories like Kikuchi, population 51,000, are difficult to replicate in major cities like frenetic Tokyo, home to 13 million.
But every step counts. Since Aeon trained her, Koizumi is constantly on the lookout, even when she’s not on the clock.
For her, this about more than keeping the elderly safe. It’s about helping them retain what all people cling to when everything else is slipping away: “Dignity.”
Meet the dementia fighters
Hiroshi Tahara has a personal mission: find the missing. It began in 2003, after the ex-cop retired and started a non-profit organization — funded entirely by Tahara and his volunteers — called Missing Person Search.
The goal was to help desperate parents find their missing children. But over the years, Tahara has been hearing more and more from families who’ve lost a relative with dementia. These people now make up about 20 per cent of cases — and they tend to be trickier to find. “It’s very difficult after three days,” he said. “A lot of cases are found dead.”
The city transformer
Uji, one of Japan’s oldest cities located on the outskirts of Kyoto, is trying to become a “Dementia-friendly city” where people with the disease can live normally. At the forefront of this effort is the gentle-mannered Dr. Toshio Mori, who is doing everything from teaching educational classes and advising local government to keeping people with dementia active through activities like tea-picking field trips — all while treating patients through his practice.
“Dementia is not a problem with others. It’s your problem. It’s your issue,” Mori said. “If you are a grandchild, and you have four grandparents that live long, you will (likely) have four dementia patients in your family ... we have to tackle this issue as a whole of Japan.”
The town crier
Tomofumi Yamamoto has been a journalist since 1975, winning awards for work that includes exposing a major corruption scandal and covering the 1995 sarin gas attacks in Tokyo.
But in 2014, the 61-year-old reporter committed a rookie mistake: he stood up an interview subject. He had forgotten about the appointment — and, as a doctor later explained, it was because he has mild cognitive impairment (MCI), which can be a precursor to dementia.
At first, Yamamoto worried about the impact on his career — but then he realized he had found his latest story. Yamamoto began writing a regular column about coping with MCI, which has now been turned into a book. “I’ve learned a lot,” he said. “And the most important thing for me is I can share my fears, ideas and thoughts.”
A major gap in Japan is that front-line doctors and general practitioners are still missing dementia cases. To fix this, Dr. Kenji Toba, president of the National Center for Geriatrics and Gerontology, is training doctors on dementia — everything from making a proper diagnosis to how they can support a patient’s caregiver.
After seven years, the program has trained 4,000 doctors — who, Toba hopes, will go on to train other doctors in their communities. “I would like to be fired from the training program, because all general practitioners have become so good and able to organize,” he says half-jokingly. “However, it may be still five or 10 years that I’ll still have such a bothersome job.”
Thirty-five years ago, Takami Kunio’s mother was diagnosed with dementia and he found himself struggling for support. He realized Japan needed to wake up to the problem of dementia so he launched the Alzheimer’s Association Japan, based out of Kyoto.
Today, the association has 47 branches across Japan and 12,000 members. While Kunio thinks the government is still underprepared for the 7 million dementia cases projected for 2025, he doesn’t think the country is headed for disaster. “I think Japan and Japanese society will not look so different (in 2025) because ... the understanding of dementia patients is getting better,” he said. “I don’t see a crisis in the future.”
The global player
Dr. Kiyoshi Kurokawa is one of Japan’s foremost scientific minds, acting as a science adviser to the cabinet of Japan and hand-picked to head the 2011 independent investigation into the Fukushima nuclear disaster.
After the G8 dementia summit in 2013, Kurokawa was also tapped to join the newly created World Dementia Council, which aims to stimulate innovation that will lead to better dementia treatments. The council has 19 members, including Dr. Yves Joanette with the Canadian Institute for Health Research.
Kurokawa sees a place for robots in the future of dementia care. “They have a lot of potential. They can work 24 hours a day, they can talk to patients, they can help with bathing.”
The daycare owner
When Nobuko Tsuboi became her mother’s caregiver, she realized there was a serious gap in care facilities for people suffering from dementia. In 2003, the warm and friendly mother-of-two decided to start a dementia daycare, which Tsuboi now runs out of her old family home. (Her mother died five years ago).
In 2005, Tsuboi also built a group home for dementia patients on the property next door — a clean, light-filled facility that houses 18 residents in varying stages of dementia. Their care is covered under Japan’s long-term care insurance, which has fuelled development (and competition) in the dementia care industry. “When I started this 10 years ago, there was nothing at all,” she says.