Learning > Inspiration

Japan learns to look after elderly with dementia

Neighbourhoods, businesses help families keep an eye on 'lost' souls

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The Straits Times on 05 Nov 2014

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TOKYO - Asayo Sakai banged on the front door, demanding to be let out. She was at her daughter's apartment, where Asayo has lived for the past six years. She has no memory of how she got there or what she is doing there.

 

As her daughter, Akiko, blocked the way, Asayo, 87 and suffering from dementia, lashed out, hitting and biting. The scene repeated itself for a year until one day Akiko, exhausted, let Asayo wander the busy centre of Osaka in western Japan.

 

"I thought, get out of here, if that's what you want," Akiko said. "Mum turned into a monster and I couldn't handle her."

 

What happened next taught Akiko things she never knew about her mother - and herself. Asayo's walks lasted hours, into the early morning. At first, her daughter followed from a safe distance. When police assured her they would try to keep an eye on Asayo, she let her mum roam alone. It was a risky act of desperation. Yet Akiko soon discovered within her own neighbourhood how Japan is trying to become more dementia-friendly.

 

Last year, the government started a scheme that helps families and communities deal with dementia sufferers on their own.

 

Businesses are helping as well.

 

Asayo's story provides a glimpse of where Japan's policies may be headed and the extent to which it is providing a road map for other countries.

 

Akiko is among the tens of thousands of grown children and other carers in Japan who, lacking access to nursing homes or sufficient home help are pushed to their psychological limits.

 

"People are desperate to find ways to handle dementia patients," said Ms Hiroko Sugawara, who runs a government-funded educational campaign.

 

Businesses are also striving to adapt as shoppers age.

 

Dementia patients tend to buy the same products over and over again, said Ms Kimika Tsukada, a manager of social affairs at Aeon, Japan's largest retailer. They open food packages in stores, eat without paying, and get lost in shopping malls, Ms Tsukada said.

 

Banks also pose a challenge. Elderly customers forget PINs for ATMs or where they have put passbooks, said Ms Yuriko Asahara, a Tokyo suburban branch manager of Japan Post, the country's biggest holder of bank deposits.

 

The growing number of elderly with dementia wandering the malls has resulted in some unusual caregiving arrangements. Aeon and Japan Post, like many companies, use government-funded programmes to teach sales clerks and staff how to handle customers who show signs of dementia.

 

In the years since Asayo first started her walks, her neighbourhood has become an informal support network. When Ms Shigeo Asai, 75, the building manager of Akiko's apartment house, spots Asayo in an elevator at, say, 6am, he invites her into his office for a chat. She then often returns to her apartment, he said.

 

Mr Asai encouraged youngsters in the building to greet her and spread the word to their parents, who now also help if necessary.

 

"Akiko let everyone see how hard it is to live with her mum," said Mr Asai, whose elderly sister was recently diagnosed with Alzheimer's disease.

 

Mr Keiji Hori, 67, who owns the Rivoli cafe a block away, looks out for Asayo when he opens to serve breakfast at 6am.

 

"I see her daughter does a lot for her mum and I... support her when I can," said Mr Hori.

 

Other locals are also keeping an eye on Asayo. The area has bars, cafes and restaurants open from 6am to as late as 3am.

 

"You'd think people in cities are busy and cold, but they are so heartwarming and helpful," said Akiko.

 

Asayo, a former nurse and housewife, was diagnosed with Alzheimer's disease, the most common form of dementia, almost 10 years ago. Her husband, Masao, died six years earlier and she had become depressed, stopped cooking and lost weight, Akiko said. A tidy person all her life, Asayo cluttered her living room with cardboard boxes.

 

Asayo at first refused to move out of her house, where she had lived for more than three decades. When Akiko finally convinced her mother to move in, she locked Asayo in the apartment to keep her safe. That did not keep Asayo from sneaking out at night.

 

"I felt ashamed to pick up my mum from police stations," said Akiko, who works at home as a freelance editor and runs an art gallery above her living quarters.

 

Asayo's dementia had progressed to the point where many doctors would prescribe medication and send her to a hospital. In Japan, about 12 per cent of dementia patients live at mental hospitals. That compares with less than 1 per cent in Britain and France.

 

Asayo had been turned down by two day-care centres. On a third try, she was accepted into a three-day-a-week programme. That still left nights holed up in Akiko's duplex apartment.

 

One day Akiko relented and opened the front door. After Asayo dashed out, she walked for 6km non-stop, said Akiko, who followed her.

 

After that first walk, something remarkable happened. As Asayo rediscovered her freedom, her anger vanished and her mood lightened. She was laughing, flirting with strangers and regaling her daughter's friends with tales of her youth.

 

"We got exercise, we were around other people, we stopped driving each other crazy," Akiko said, taking another chance. She cut out many of the drugs her mother took for Alzheimer's, diabetes, hypertension, high cholesterol and thinning blood. Asayo became more tranquil.

 

She no longer takes Aricept, commonly used to slow the progression of memory loss. It has side effects, including nausea and diarrhoea, in 20 per cent of people who take it, according to the Mayo Clinic in the United States.

 

Side effects may have played a role in Asayo's agitation and violence, said Dr Steve Iliffe, professor of primary care for old people at University College London.

 

"You can't imagine how much energy she has and how robust her physique is," Akiko said.

 

Wandering is common in dementia patients. While it can be dangerous if unsupervised, walking helps calm down agitated patients, Dr Iliffe said.

 

Though her memory is not returning, Asayo is revelling in a new phase of her life. When she is not wandering, she is regaling shopkeepers and restaurant workers with yarns.

 

"She is like an actress or clown on stage. She loves getting attention," said Akiko. "I am horrified to think that I might never have known this side of my mum."

 

Akiko hopes to keep her mother home for as long as possible. And she has learned to let go of the day's tensions. "She lives in the present, forgets the past and can't think of the future, so I try to be that way too."

 

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

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