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In Japan, it takes a community to help dementia patients

Rapidly ageing Japan is working hard to ensure sufferers get support they need

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Tor Ching Li on 14 Apr 2018

The Straits Times

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TOKYO • Every Thursday, a volunteer turns up at the home of Madam Keiko Hayashi to take her elderly mother for an hour's walk.

 

This frees Madam Hayashi to clean and tidy her mother's room. But the real reason is that her 77-year-old mother has dementia, which makes her suspicious of people, including loved ones.

 

"If she's around when I go into her room, she thinks I'm trying to steal something," explained the daughter, who is in her late 50s. "It was upsetting at first but I've learnt how to deal with it."

 

Still, Madam Hayashi considers herself lucky as she lives in Matsudo, a dementia-friendly city in Chiba prefecture, east of Tokyo.

 

Across rapidly greying Japan, there are other cities like Matsudo which have built community-based support networks and rolled out initiatives to help dementia patients and caregivers.

 

Matsudo, a city of 500,000, has the country's second fastest-ageing population, after Akita city in the north.

 

Already, one in four residents in Matsudo is over 65 years old. Of this number, 20,000 have dementia. The city has projected that the figure will rise to 30,000 by 2025.

 

A decade ago, Matsudo launched the Dementia Research Group comprising doctors, caregivers, local care centres, and family members of dementia patients, according to a spokesman for the city's Elderly Welfare Department.

 

It now has a network of more than 20,000 supporters, of whom 3,000 help with regular patrols and 500 are trained to provide support and consultation to families, such as taking dementia patients for walks or keeping them company.

 

"Just knowing there is a network I can reach out to is a great comfort. I wasn't sure how to cope at first," said Madam Hayashi, whose mother was diagnosed with dementia three years ago.

 

People with dementia experience a decline in mental ability as a result of the death of brain cells or damage in parts of the brain.

 

The disease affects their memory, problem-solving ability, concentration and perception. That means dementia patients often have problems with short-term memory, and face difficulty keeping track of their belongings and appointments or finding their way home. They may also have mood swings and bouts of incomprehensible behaviour.

 

GROWING DEMOGRAPHIC

 

The need for greater community awareness of dementia and for better caregiving support has become more urgent in Japan.

 

Already, one in four Japanese is aged 65 or older; by 2050, it is projected to be one in three.

 

Before then, the number of "superelderly" - those aged 75 and above - will be twice that of those between 65 and 74 years old by 2025. The dementia demographic would by that time be a staggering 7.3 million people, or one in five Japanese aged 65 and above, according to the Health Ministry.

 

There are also trickle-down effects. The Statistics Bureau states that every year, some 100,000 people leave their jobs to look after family members - usually parents - who are suffering from dementia.

 

In 2015, the government launched a comprehensive Orange Plan to tackle issues related to dementia, rolling out more resources for early detection, rehabilitation and a social support network. Core initiatives include Orange Cafes where consultation clinics and seminars on relevant topics such as caregiving are held for family members.

 

Matsudo also holds regular awareness activities such as Orange Walks to instil a sense of dementia-friendliness within the community. Early detection quizzes are held at Orange Cafes as part of prevention efforts.

 

Said Mr Atsushi Okaya, who runs Haruhi Dementia Facility based in Yamaguchi prefecture: "The building of a social support network is pretty much left to the community.

 

"And we need the local network to be involved. We hold consultation clinics for dementia patients and awareness seminars on caregiving, and we even distribute a monthly newsletter locally on our activities."

 

ORANGES AND LEMONS

 

A major problem faced by family members of dementia patients is that they would go for a walk and be unable to find their way home.

 

More than 15,000 people with dementia went missing in 2016, according to the national police agency. The number has been rising steadily from about 9,000 in 2012. Dementia patients account for nearly 20 per cent of missing people in Japan.

 

Sakata city in Yamagata prefecture was one of the first to implement GPS tracking via vending machines in 2015.

 

Given that there are five million vending machines across Japan and practically one at every turn, the city came up with the idea of equipping dementia patients with a mobile device that sends signals to WiFi devices in vending machines.

 

Should a patient wander off, family members will receive a notification that their loved one has passed one of the WiFi stations.

 

Matsudo also has an initiative to help locate dementia patients who go astray. It hands out a QR code that can be ironed onto the clothing of patients, who can then be tracked by the authorities and family members.

 

Uji city in Kyoto prefecture is also dementia friendly. Nearly three in 10 of its 190,000 residents are aged over 65. The city started an early stage dementia intensive support programme in 2014 to detect residents who may have dementia and provide them with support.

 

This involves sending all residents aged above 65 a lifestyle survey, with those who fail to respond to it being visited by a dedicated team. The team then monitors the person's lifestyle and health status for a year.

 

In addition, a ground-up initiative called Lemon Company was set up by a group of people living with dementia and their caregivers. It gets dementia patients to participate in sports and memory exercises.

 

Said Mr Yuichiro Kitagawa of Uji's Public Welfare Corporation: "Uji was the first city where the mayor declared our goal to be dementia friendly. Our efforts are driven by four engines: a medical and welfare team of specialists, public welfare for affordable care, support from the municipality, and people living with dementia and their caregivers."

 

It launched an alliance - also known as LemonAid - in 2016 involving the support of local banks, taxi companies, businesses and agricultural-related firms. There are now nearly 50 such entities that have pledged to be on the lookout for dementia patients and offer aid when needed.

 

LABOUR OF LOVE

 

One aspect that all public and private stakeholders agree on is the need to create an environment where dementia patients can live as normally as possible as part of the community.

 

Said Mr Kitagawa: "One of our efforts is to involve them in local industry, such as helping to pick tea leaves. This boosts their confidence and also shows that they can be part of a regular social setting."

 

For the same reason, Mr Okaya of Haruhi Dementia Facility links his residents with small businesses that need an extra hand, such as mushroom farming and harvesting.

 

Said Mr Okaya: "Their cognitive abilities may be in decline but they can still do things that they used to do in the past, such as housework or other skills they know by heart."

 

One resident with severe dementia, Mr Setsuo Matsudomi, 80, has stopped going missing from the facility since he started working.

 

Twice a month, he is taken to a factory to help make packed lunches. He also helps to sharpen the knives there, a chore he used to do frequently before he was afflicted with dementia.

 

"It's fun to keep busy," said Mr Matsudomi, who is paid for his work. "I look forward to my work days. I feel happy to see the knives I sharpen slice well."

 

When given tools to work with, Mr Matsudomi becomes fully focused on the task at hand, posing no danger to himself or others, said Mr Okaya.

 

"Being able to work, get paid and buy things with the money earned is a simple joy that dementia patients should be able to experience in a community they are familiar with," Mr Okaya added.

 

This philosophy was at work at The Restaurant of Order Mistakes, a tongue-in-cheek pop-up initiative held in Tokyo in June last year.

 

The eatery was staffed by 20 dementia patients aged from the mid-40s to 90s. And customers were mentally prepared that their orders might get mixed up, as hinted by the eatery's name.

 

One diner, for example, ordered a hamburger, but was served gyoza dumplings instead. Despite the mistake, the customer tweeted that she enjoyed the meal.

 

The restaurant was the brainchild of Mr Shiro Oguni, a television producer who came up with the idea after doing a documentary on a home for dementia patients five years ago.

 

The eatery was so well received that Mr Oguni and his grassroots supporters plan to revive it for a limited period in 2020.

 

"Only a few customers were served the wrong order," he said. "In fact, people were a bit disappointed when they got what they had ordered."

 

And that feedback was proof that the restaurant was successful in achieving what it set out to do: To raise awareness of dementia and to foster acceptance of people with the illness - by getting the community involved.

 

Source: The Straits Times © Singapore Press Holdings Limited. Reproduced with permission.