In Japan, a crisis as loved ones with dementia go missing, some for years

29 January, 2018
In Japan, a crisis as loved ones with dementia go missing, some for years
Thousands of them wander off each year, alarming their families and stretching police resources. The programme Get Real looks at the obstacles involved.

JAPAN: Stranded in the cold on a street in Osaka, the old man had nothing but the clothes on his back. He had wandered far from home and was lost.

When approached by the police, he could not provide his address, any relative’s name or even his own, for he had dementia.

Trying to help this man, aged around 70, was a challenge for judicial scrivener (a notary in Japan) Tetsuo Yamauchi. “I asked him what his name was, hundreds of times. Every time, he said he didn't know. It was a difficult situation for everyone: For me, as the guardian, and the officials at city hall,” he said.

The stranger ended up spending two years in nursing home Daini-Taisho-En. He was even given the alias Taro Nishiyodo, the surname taken from the district where he was found.

This case was a first for Japan, said Mr Yamauchi, and “no one knew how to go about it”. There were no procedures in place, and the task of identifying one person in a country of 127 million seemed impossible.

The conundrum of the wandering elderly like Taro is fast becoming a crisis in Japan.

In 2016, more than 15,000 persons with dementia were reported missing - a record number, and a 26 per cent increase from 2015, said the National Police Agency.

And that figure looks certain to rise, with the number of dementia sufferers expected to grow from 4.6 million now to 7 million by 2025 - the equivalent of one in five people aged 65 and above.

“If the government doesn’t come up with effective measures, this problem will become catastrophic," lawyer Tetsuhiko Kobayashi, leader of a volunteer group that searches for lost dementia patients in Tokyo, told the investigative programme Get Real.

But is the country ready to deal with the missing wanderers? 

Taro’s plight highlights how a case of a lost dementia sufferer can go so wrong in Japan.

When he had gone missing, his family went to the police in Hyogo prefecture, and their report was sent to the country’s 46 other police departments.

But the neighbouring Osaka department, which had found him and filed its own report, never matched the Hyogo report and vice versa, even though such reports of persons who go missing or are found are shared in a national database.

Mr Yamauchi said: “I started looking into the police organisation’s procedures and realised that when it comes to identifying people, the database was incomplete. This wasn’t only a system error but also a human error.”

And after Taro left police custody and entered into Osaka city’s care, his guardian was unable to match his identity with the Hyogo report.

“The information that the police have and the information that the (Osaka) city office have were not integrated,” added Mr Yamauchi. “And because the systems were not integrated, the information couldn’t be located.”

The police are also “overstretched”, said retired officer Hiroshi Tahara. In 2009, he started the Missing Person Search and Regional Safety Support Association of Japan, which tracks down missing people; most of his cases are dementia patients.

“My son is a police officer, so we discuss this a lot. He says they get so many people who have missing family members calling (to say), ‘Please go out and find this person right away,’” said Mr Tahara.

“Policemen can’t be tasked to search for someone who frequently wanders. They’ll only search for the first three days.”

He added that because the law lets the Japanese live where they want, “even if the police officer thinks that someone resembles the missing person, they can’t act”.

CULTURAL TABOO

The search for dementia sufferers can be challenging also because they often do not realise they are lost and would not ask for help. Some may even resist it, while many are often unable to articulate their needs.

To make matters worse, family members often do not report their lost relative owing to a cultural taboo surrounding dementia in Japan, where there is an aversion to sharing personal problems.

Or if they file a report, they may not provide a photo because they do not want to advertise the fact that a loved one is senile - and, perhaps more importantly, that they could not prevent that person from wandering off.

While Ms Sachiko Nishida is one who would inform the police whenever her father goes missing, she had kept his condition – which he was diagnosed with six years ago – a secret from relatives and neighbours.

“It’s difficult to announce that there’s a dementia patient in the family,” she admitted.

Generally, any situation that is uncommon or out of the ordinary is shameful for the Japanese. We don't want people to know. 

"Even if it’s a good thing, we want to hide it. That’s typical of Japanese mentality.”

Despite being unable to provide 24-hour care for her father Koji Ego, she resisted seeking support from relatives. But in 2016, she had a breakdown and decided to tell them the truth. She also approached his brother for help.

“I assumed they wouldn’t help me, but I asked anyway. Surprisingly … relatives like my uncle happily agreed. From then on, I had help,” she said, adding that she also told neighbours about her father’s condition.

One time, a neighbour ran to her, saying that her 82-year-old father had wandered off in the direction of a park.  “I gave chase immediately,” recalled Ms Nishida. “If I hadn’t told them, they wouldn’t have come to inform me.”

Mr Ego used to be found as far as 3km from home; there was once he stayed out for almost three days. By bucking social norms, his daughter has now contained his wanderings.

But taboos are causing other families to suffer the burden of dementia alone and in silence. The solution to this involves a rewiring of cultural norms.

BREAKING THE SILENCE

The reluctance to talk about dementia is only increasing ignorance of the illness, which is why research director Kumiko Nagata from the Tokyo Dementia Care Research and Training Centre wants to break that stigma.

There are consequences when ashamed families hide their suffering elderly at home, she said.

This need to ‘leave the house’ is natural for dementia sufferers … because it’s very stressful for them to be trapped in an area for a long time.

“By ‘wandering’, the person feels liberated and that they can do what they want,” she explained.

Her team has developed a “SOS network”, which encourages carers to register their dementia patients with the authorities, including information on their favourite haunts.

These profiles are entered into a public database and shared with agencies like the police, the fire department and even with 24-hour convenience shops, whose managers are trained to spot and assist dementia sufferers who venture into their shop.

“With more connections, more people can help in the search. It means assistance from not just a small portion of the community, but also from companies, healthcare industry workers and transport companies,” said Ms Nagata.

Only 40 percent of local authorities have adopted the SOS network, but there is hope that it will be utilised widely, relieving the pressure on families battling with dementia.

The burden is both an emotional and a financial one. According to Japan’s health ministry, the cost of social and health care for dementia patients totalled ¥14.5 trillion (S$174 billion) in 2014. Nearly half of that was borne by families.

VOLUNTEERS STEP IN

The country has since attempted to move away from a medicine-based, institutional approach towards care involving the entire community.

In 2015, the government released its Orange plan – a set of measures to tackle dementia, ranging from more specialised medical staff to regular home visits and support for family caregivers.

Cities, too, have taken the initiative in their own ways. Last year, local officials in Matsudo began distributing stickers carrying a QR code that can be ironed onto clothing, to help police locate the families of those found wandering the streets.

Charity groups have also been playing a role. About once a month, the volunteers of non-profit organisation Hot Plus approach the elderly in Tokyo city centre, offering them food and often finding dementia sufferers who are lost.

Many of these patients are part of the homeless community. “They’re usually not able to hold a conversation properly,” said the organisation’s director Takanori Fujita.

“It’s common to find them in poor hygiene conditions, (and) it’s quite easy to identify some of them. We bring (those) who are able to hold a conversation to the community support centre, and we bring the rest to hospitals.”

But there is a limit to what civilian volunteers can do, lawyer and volunteer Mr Kobayashi said during one of their rounds. He observed that the number of dementia patients wandering the streets has soared in the 10 years since the group was founded..

Mr Fujita even started Japan’s first senior citizen “postbox” - in 2011 – where hard-pressed families can leave elderly family members they can no longer afford to care for, including dementia patients.

These elderly individuals are then assigned to an old folks’ home.

“People with dementia come to me for help too because they think they can’t rely on their family. Nursing care for them is tough to provide, and the family would abandon them,” he said.

ARE THE LOST EVER FOUND?

Even when dementia patients are placed in nursing homes, there are other issues, especially if the patient had gone missing from their families.

“When this resident has to be hospitalised and an operation becomes necessary, who can authorise it?” said nursing home administrator Yoichi Ishumura.

That’s the biggest problem faced all over Japan – not being able to proceed with medical procedures (in such cases).

His care facility was the one that took in Taro, after dozens of others had declined because they were full or because they preferred to have residents with medical records.

Reporter Yuji Semba from The Mainichi Newspapers was chasing down cases of missing people when he heard about Taro’s plight. Mr Semba proposed writing an article, in the hope that the man’s family might come forward.

In April 2014, the article was published, and Taro’s family saw it. After spending two years with strangers, he finally discovered his real name and was reunited with his family.

But that happiness was short-lived. He developed an infection from internal bleeding and remained at the care facility. He died in February 2016 without ever returning home.

By the year he died, 44 people with dementia had been missing for over two years. Their stories may not have a happy ending either.

In Canada, for example, a missing dementia patient who is not found within 12 hours faces a 50 per cent chance of injury or death.

In Ms Nishida’s case, when her father goes missing, she rushes to check the railway crossings near her home first, fearful that a train might hit him.

“If he walks on to the main roads, he could be hit by a car. So when he wanders, we try to find him as quickly as possible. We constantly worry that he has already met with an accident,” she said.

When Taro was missing, his family suffered “so much”, said Mr Yamauchi, adding: “They thought it was their responsibility and blamed themselves for it. Even after he was found, they kept on blaming themselves. It’s sad.”

As Japan grapples with an ageing population, dementia will become more of an issue, and the stigma attached would have to be removed for the country to embrace dementia sufferers and their carers.
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