Fighting dementia together

NAMYANGJU, Gyeonggi Province -- For Hong Jin-mi, it took her some time to take the early signs of her husband’s dementia seriously. At first, she thought he was simply trying to be funny.

“I would ask him to pass me my cellphone,” Hong, 75, told reporters. “And then he would act as if he could not tell where the phone was, although it was right in front of him. And then later I realized it was him trying to hide the fact that he could no longer tell what a cell phone looks like. He was humiliated.”

It has been two years since Hong’s husband first showed symptoms of the brain disease. Now, the 80-year-old no longer remembers the names of his friends. It takes time for him to remember the names of his own grown children. He no longer is able to tell the names of vegetables -- tomatoes, spinach and eggplant. “He just knows they are edible,” Hong said, adding that he may soon forget that as well.
 

Hong’s husband is one of some 725,000 elderly Koreans who have been diagnosed with dementia as of this year. The country has been seeing a steady increase of dementia patients, partly because of its rapidly aging population.

The Ministry of Health and Welfare predicts that the number will reach 840,000 by 2020 and 2.71 million by 2050. By 2050, in particular, dementia patients will account for 15 percent of all Koreans aged 65 or older here, according to the government.

Tackling dementia is one of the major health care promises made by the current Moon Jae-in administration. The government recently increased the number of dementia care centers from 205 to 252, implementing additional programs specifically designed to support family members of the patients, on top of those who suffer from the disease. 

The centers are part of the Moon administration’s measures to tackle dementia; the government last year allocated 467.6 billion won ($436.7 million) for its support programs for those who suffer from the brain disease, which deteriorates one’s memory, thinking and eventually his or her ability to perform everyday activities.

Up until about a month ago, Hong’s husband spent most of his time sleeping at home. Even when he is not tired, he would force himself to sleep by taking sleeping pills.

“He kept forgetting words and I think he lost his desire to speak -- and do anything at all -- because of this,” Hong said. 

“I know a lot of families with dementia patients struggle because they would try to get out of the house and go missing. That wasn’t the case for me, as my husband would only sleep at home. But it was also disheartening to see him so unmotivated all the time.”

Hong’s husband started to change as he began attending the Namyangju branch of the state-run dementia care center in Gyeonggi Province. There, he participates in daily physical exercise sessions and plays memory games using tablet PCs, among activities. 

“It’s nice to see him having something to look forward to every day,” said Hong. “Before coming to the center, he even stopped going to his church. But he enjoys coming here.”

And he is not the only one who benefits from the center. When her husband is in class, Hong also attends a session specifically for family members of dementia patients. In the session, she gets coached on how to manage stress while caring for her husband.

Hong said her children at first did not believe her when she informed them of her husband’s health condition. 

“One day he would act completely normal and the next day he would become a different person,” she said. “So it took our children some time to understand and accept that he indeed has dementia. And the process was not necessarily easy.”

Hong said this is why she enjoys interacting with other people who also have family members with the same disease at the center.

“It was at times hard for me control my feelings after he was diagnosed with dementia, but now that I get to share my experience with those who are also going through something similar, I feel better. And we learn from each other.”

But for elderly Koreans who live on their own, the fear of the disease is much greater.

Kim Yeon-suk, an 85-year-old widow, said she is more afraid of dementia than cancer. She lives on her own, and financially relies on her grown children. Prior to learning about the dementia care center, she spent most of her time at a community center for the elderly. Although Kim does not have dementia, she regularly visits the center in an effort to prevent the disease after being informed that she has a high risk of developing the illness, mostly due to her age.

“I can’t even sleep at night when I think about the possibility of me having dementia. I think I’m especially afraid because I live my own,” she told reporters.

“I’ve witnessed my friend’s husband changing dramatically after being diagnosed with dementia. He used to be such a sharp, smart person. All he can say right now is ‘Thank you for the meal.’ I realized even smart people like him can have dementia. And I worry about it -- I’d rather have cancer than dementia.”

Kim has five children, and she recently moved to Namyangju in order to live closer to her youngest daughter. “She runs a bookstore with her husband and they are always busy,” she said. “Whenever I visit them, they don’t really seem to be pleased to see me. If I get dementia, I guess I’ll have to go to a nursing home.”

Dementia -- and caring for those with dementia without social and emoitonal support -- has been often reported as one of the causes of family separation and even suicides in South Korea.

In 2014, popular K-pop star Leeteuk‘s father made headlines after it was discovered that he took his own life after reportedly killing his own parents. It was later reported that his father had been suffering from depression while trying to make ends meet and caring for his parents who were both battling dementia.

Last year, a man in his 50s, as well as his parents in their 80s, were found dead in their apartment. The man’s parents had been suffering from dementia over six years, and none of the family had regular income. Before burning charcoal in the room, the son had sent a text message to his nephew -- asking him to hold a funeral for him and his parents.

In response to such tragedies, the Moon administration announced last year that it will raise the dementia coverage ratio of the health insurance to 90 percent while lowering the cost paid by the patients or their families to 10 percent.

The government also aims to increase the number of staff members at each dementia care center from about 10 to 25, and launch a 24 hour call center for families of dementia patients this year.

“Coming to this center is the most important thing in my life right now,” said Nah Geum-hee, a 80-year-old dementia patient with mild symptoms. She lives with her grown son, who is unemployed at the moment.

“All I do at home is watch TV. Here, I get to participate in arts and craft and engage in physical exercises. I feel awake when I’m here.”

By Claire Lee (dyc@heraldcorp.com)

Hong Jin-mi and Nah Geum-hee are not their real names. It has been changed upon their request. --Ed.