For 61-year-old Nayako Yamaguchi, taking care of her 66-year-old sister, Etsuko, is a job she does 24 hours a day, seven days a week.

Etsuko had a stroke in July 1999 that left her bedridden.

A woman watches TV as her helper, dispatched under the nursing care insurance system for the elderly, cleans her apartment in Tokyo’s Adachi Ward.

One night earlier this month, Nayako became alarmed by her sister’s irregular pulse and called an ambulance. After hours of waiting at a hospital, it was around 10 a.m. the next morning when she finally took her home.

She has trouble sleeping even on relatively uneventful nights, with the onus of attending to her sister’s needs always weighing upon her.

“I am worried about how long my physical strength will last,” said Nayako, a resident of Tokyo’s Arakawa Ward.

Despite the inevitable toll on her well-being, however, Nayako’s use of nursing care services under the nursing care insurance scheme for the elderly, which started in April, is at a minimum.

“I wish I could leave the burden of care to others, but I cannot,” she said.

“I have a personal attachment. I want to take care of my sister by myself.”

The system, which is financed by taxes and premiums from those aged 40 and older, was intended to liberate family caregivers such as Yamaguchi from “nursing-care hell.” It provides various care-related services, including household chore help, nursing care, rehabilitation and house calls by nurses and doctors. The elderly can also choose to stay at nursing homes or other facilities under the scheme.

While the issue of caring for the elderly within the family has been under the public spotlight for years, it has become an urgent affair in recent years with the Japanese population aging rapidly.

The Health, Labor and Welfare Ministry estimated that the number of the elderly requiring nursing care reached about 2.7 million in 2000 — 13 percent of those 65 or older — and the figure is expected to double by 2025.

Many Japanese families remain reluctant to seek outside help, faced as they are with severe psychological and financial barriers.

Weight of expectation

Atsuko Ikeda, representing a civic group based in Tokyo that studies the country’s nursing-care situation, said it is not rare for family caregivers like Nayako Yamaguchi to take care of ailing family members for years on end.

Her group has conducted a periodic tracking poll on 758 elderly people, or families of elderly people, since 1999. In the latest poll, conducted in October and November, 43.1 percent of caregivers said they had taken care of elderly people for at least five years.

Under the public nursing-care insurance system, senior citizens who have been designated as eligible benefit from certain services based on their needs.

Ikeda’s survey shows, however, that, on average, people use only a little more than half the amount of services to which they are entitled under the system. This is despite nearly half the respondents answering that the care burden on family members has not been relieved since the system was launched a year ago.

Ikeda attributed this scenario to a lack of understanding among the elderly and other family members regarding the daily hardships endured by family caregivers.

In Japan, the tradition that family members — and sons’ wives in particular — are responsible for caring for the elderly is so deep-rooted that other family members who are not primary caregivers do not feel obliged to seek outside help, as long as caregivers remain functional, she said. She added that 30.6 percent of 385 respondents to her survey said that wives took care of their in-laws, with 27.3 percent of daughters carrying out the task.

“I might be a little pessimistic, but I believe it will not change until the current generation of caregivers becomes service recipients,” she said.

Also rooted deep in the Japanese mentality is a strong reluctance to allow “strangers” access to the family’s private sphere.

Hisako Yamamoto, a nurse and care adviser to Nayako Yamaguchi, said her client’s hesitation to use outside services is partly due to her brother and his wife, who live with the sisters and want to maintain their privacy.

Financial burden

Critics of the system point out that the financial burden of using these services is also a strong deterrent in some cases.

Under the scheme, elderly people who use the services must shoulder 10 percent of the cost, meaning those with the highest needs can face a bill of up to 36,000 yen a month.

The Health Ministry said that the imposition of this kind of charge means users are placed in a better position to claim their rights as consumers.

It is also true, however, that the financial burden weighs heavily on the poor, most of whom received similar care services free under the welfare program.

Before the introduction of the new system, Masaji Nagumo, 79, of Tokyo’s Adachi Ward, paid only 500 yen for nurse calls twice a month and received household chore services free as part of the ward’s welfare program.

Suffering from emphysema, he is linked up to an oxygen tank 24 hours a day, and now pays around 7,000 yen a month for a similar program of services.

For a pensioner with a monthly income of 80,000 yen, “it is a large burden,” he said, adding that he has begun using his small savings account to make ends meet.

In an obvious show of defiance toward the central government, some municipalities have decided to shoulder part or all of the premium and service charges for their destitute elderly residents.

“We received calls from the elderly that they could not pay premiums,” said an official from the western Tokyo suburb of Koganei, which started waiving premium and service fees for several dozen elderly residents in November.

The Health Ministry said that the system is in the form of an insurance scheme — under which people pay monthly premiums — because the mounting burden of caring for the elderly should be shared by all members of society.

For people aged 40 and older and elderly people who do not need nursing care, however, the start of the system has also led to an additional financial burden during a time of prolonged recession.

When municipal governments started collecting premiums in October, they were inundated with angry phone calls, mainly from healthy elderly people who could see no need for such services in the foreseeable future, according to local government officials.

Experts say the central government should educate the public further about the insurance system and the spirit behind it.

Criticism of evaluation

Under the system, elderly people are not automatically eligible to receive nursing-care services. They must first apply with municipal governments and go through a two-stage evaluation process.

Questions have been raised, however, regarding the objectivity of the evaluation process.

Computer software developed by the Health Ministry and used in the first stage of the evaluation process has been widely criticized for failing to reflect the real situation of elderly people in need of care.

In particular, it tends to assign lower care-need levels to senile elderly people with relatively normal physical functions since its checklist of items is weighted toward physical abilities, critics say.

The city of Abiko, Chiba Prefecture, has ignored computer results for those suffering from dementia when assigning care-need levels.

“Under the current computer system, those who are suffering from dementia but are physically fit are given only the lowest or the second lowest levels (among the six-tier categories),” a city official said. “Yet, actually, more attention and care are needed for them than physically disabled people.”

The ministry said the aim of the system is to help elderly people achieve as much independence as possible, noting the system offers rehabilitation services such as house calls by experts and outpatient visits to special facilities.

In reality, however, even when ailing elderly people are willing to work to arrest their deterioration or regain their physical functions, the shortage of such services nationwide hampers their efforts.

Mitsunobu Fujita, 70, from Tokyo’s Kita Ward, was scolded when he attempted to do a rehabilitation workout at a daytime nursing center recently.

“You should not do that, because we cannot take responsibility if you get injured,” a staff member told him.

His left leg was left paralyzed following a stroke two years ago, and he now lives with his wife at a public housing unit.

He is undergoing a hospital rehabilitation program, but wants to do more at home, he said.

No rehabilitation services are available, however, in stark contrast to what is stipulated in the system, and his level of frustration is increasing.

“Some families do not want to use strangers’ hands and others may not be able to use services for financial reasons. But there are also cases in which people cannot find the services they need,” said Yamamoto, who is also Fujita’s care adviser.

Human rights issues

Shuhei Ito, who teaches social welfare policies at the graduate school of Kyushu University, said the system will never reduce the care burden on families, since its designers based the cost of the premium on the assumption that 33 percent of the maximum amount of services available would be used on average.

“If everyone is to use the services to the capacity, the monthly premium will shoot up to around 10,000 yen, otherwise the system will go bust,” he said.

Even then, the services on offer would not be sufficient to replace the care currently provided by family members, according to Ito, who has written extensively on the nursing-care insurance system.

“If we design a system that would liberate families from the nursing-care hell, 20,000 yen in monthly premiums would be needed,” he said. “The central government has failed to explain that point to the public, and only publicized a vague perception of the system in an emotional manner.”

He also criticized the fixed-price premium, saying it unfairly favors the rich, and added that the insurance scheme should be entirely funded through taxes.

He is also highly critical of the 10 percent charge, saying it hurts poor people badly.

He said the concept of establishing rights through payment is nonsense, and ignores the tenets of basic human rights.

“The logic goes you cannot claim your rights unless you pay money,” he said. “The rights arise where the needs are, not where the money is.”

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