The mental toll of an aging nationHong Seong-bae is used to leaving a batch of clean shirts in his car. If one of his parents has wandered away from home during the night, Mr. Hong, 39, does not have enough time after searching for them to go home to change clothes before he heads off to work in the morning.
Wandering hasn’t been unusual behavior for his mother, 66, who has suffered from Alzheimer’s disease since Mr. Hong was a small child. But when his father, a 76-year-old war veteran, was diagnosed with senile dementia five years ago, things quickly got out of hand.
Mr. Hong has searched for his lost parents in many places. Sometimes he ended up in the woods near his home; other times it was at a hospital emergency room, a police station or a neighborhood far from their house in Gimpo, on the outskirts of Seoul.
Indeed, Mr. Hong, who recently quit his job at an automobile company and now breeds dogs, is starting to realize that he and his wife, Yun Seong-suk, may no longer be able to look after the old couple in their own home.
“If I just had one brother,” Mr. Hong says, “I would have been tempted to send my parents away to his family right now. That’s how exhausted we are.”
Yet, that’s an unlikely prospect, since Mr. Hong, who lives with his wife, two children and parents, is the only son of the family with four siblings.
The situation faced by Mr. Hong is not atypical for those caring for parents with neurological disorders such as Alzheimer’s, and the number is expected to rise sharply in the coming years as Korea’s population ages.
Ms. Yun, who has done most of the care-giving for her parents-in-law, takes her situation calmly, though her unusual calmness shows that her patience goes beyond the ordinary since she started looking after her ill in-laws.
The illness has put a heavy burden on Mr. Hong’s entire family. Since Ms. Yun broke her leg in August and was recently hospitalized for other illnesses, most of the domestic work has been left to the couple’s 16-year-old daughter.
Aside from the typical dilemmas of dealing with such patients, there are other stresses stemming from the illness that devastates Korean families like Mr. Hong’s ― the lack of understanding in a society that views the disease with shame.
The couple recently moved from an apartment in downtown Gimpo to a house in the suburbs in Haseong county, an illegal settlement on government property about three kilometers (1.9 miles) away from a residential district. The family couldn’t endure the neighbors’ complaints.
“There are not many places in this country where you can live with patients with Alzheimer’s disease,” Mr. Hong says. “You have to give a lot of excuses to your neighbors. If the patients wander away from home in the city they can easily be hit by a car, or are harder to find.”
Kim Do-gwan, a neurologist at Samsung Medical Center, explains that the fear and shame surrounding the illness often make Alzheimer’s patients in Korea delay seeking proper treatment.
Indeed, out of the estimated 400,000 Koreans over 65 who have Alzheimer’s, according to a recent survey, only 5 percent are said to have received medical treatment.
“It’s quite common among Koreans to view dementia as a natural symptom of aging, not an illness,” Mr. Kim says. “Other than the economic issue, the lack of social awareness about the disease is among the biggest concerns that stop people from seeking help from hospitals in the earlier stages.”
Things are slowly changing, he explains, but those in Korea who still openly approach a doctor about Alzheimer’s symptoms seem to be those with higher incomes and better education.
But even if those with Alzheimer’s want to seek treatment there is one common problem that affects most patients and their families ― there are not enough hospitals and social facilities to provide patients with professional medical care at a reasonable cost. That has become a significant social problem in a country with an aging society, where in five years experts expect that the number of Alzheimer’s patients will nearly double to 700,000.
Currently in Korea, about 10 hospitals specialize in providing long-term medical care for Alzheimer’s patients, but medical insurance only covers the patients’ first three months of hospitalization. A few other facilities funded by the government provide daycare services and short-term hospital admission at a reasonable cost, but they prioritize citizens receiving a government subsidy to maintain a minimum standard of living.
There are private nursing homes run by religious charities and social welfare organizations that offer care at a minimal cost, but medical treatment in such places is often very poor. A few private facilities with better services are available outside of Seoul, such as the Noble County Nursing Home run by Samsung in Yongin, that have staff nurses, doctors and caregivers, but the monthly cost there is well over 2 million won ($1,950) on top of a 50 million won deposit.
That has left some Alzheimer’s patients from the middle and working classes, who can’t afford advanced private facilities but don’t meet the requirements for state-run facilities, in the shadow of making extreme choices, such as suicide. The situation has also led some families looking after Alzheimer’s patients to make dramatic decisions such as abandoning the patients or becoming physically violent toward them.
“One of the first changes you start to notice after a few weeks of the patients’ arrival here is seeing them slowly getting out of their depression,” says a nurse at Seodaemun Hospital in northern Seoul, which recently set up a special clinic for Alzheimer’s patients. “A lot of them come from families suffering from their own problems. Some of them have been so severely battered by their children that they are vulnerable for the first few months.”
The lack of funding by the Korean government for the welfare system for senior citizens has been a continuing symbol that suggests the country is far from meeting the standards of a developed country.
The average portion of the government budget spent on senior citizens in developed countries ranges from 15 to 20 percent, according to research led by Kim Dong-bae, a professor of social welfare at Yonsei University. In Korea, it’s less than 0.3 percent.
“We seem to come back to the same question: Why should we make an investment in senior citizens?” says Lee Eun-ah, a senior neurologist at Seodaemun Hospital. “The answer is simple: Because we can’t let them die early.
“So the government needs to set its agenda. It can either take prevention-oriented measures by educating citizens and developing daycare programs that could maximize the patients’ well-being through early diagnosis while easing the caregivers’ burden. Or it can use medical insurance to cover long-term care for bedridden patients,” she says.
Either option demands bold investment, Ms. Lee explains, though taking preventive measures is considered a more ideal alternative in countries with well-developed welfare systems. Apparently, the current government’s approach tends to take the other route, Ms. Lee observes, as preventive measures require a longer period and better planning before they have a real impact on patients.
“It gives us the impression that this government is looking for a more immediate response that could show their effort within a short period,” she says. “But is it worth it to live in your bed for 10 years with a tube in your nose? We need to find ways to extend the patients’ functional ability so they can live independently as long as possible. But the current system leads patients to become dependent too soon.”
Ms. Lee reveals concerns about the government’s approach, adding that it should “actively” support the system since it can’t ethically cut back funding on medical insurance for older citizens, letting them die sooner, before they are exposed to illnesses like Alzheimer’s disease or strokes, where long-term treatment is inevitable.
Indeed, part of what Seodaemun Hospital, an institution run by the Seoul government, does is to train patients to become more independent through programs that facilitate memory while stabilizing symptoms. Songpa Nursing Home, also run by the city government, offers programs that are just as good, though the limited capacity often leads to a long waiting list of patients.
For patients living outside Seoul, however, such benefits are even scarcer. Currently, there is no welfare facility providing medical care in Gimpo, where Mr. Hong’s family lives. There were discussions about building a state-run hospital for Alzheimer’s patients in the city, but the plan failed after the residents protested, saying it would lower real estate values in the neighborhood.
In a culture where having respect for parents is considered among the highest virtues, Mr. Hong says the current system leads families to abandon their values to escape their desperate reality.
“Though our family couldn’t do it,” he says, “we can understand why children abandon their ill parents with dementia. For some families that becomes the only way for them to live.”
“A lot of emotional support is needed for families in Korea living with Alzheimer’s patients,” says Baek So-young, a manager of Alzheimer’s Association Korea, a group that organizes public education and support groups for patients’ families. “People even joke that there is no such thing as filial duty when it comes to having parents with Alzheimer’s disease in Korea.”
by Park Soo-mee