Alzheimer’s takes unbearable toll on families

2014-01-10 18:42

Alzheimer’s takes unbearable toll on families

Government urged to take measures to lighten burden
By Kim Da-ye
In 2012, Kim Joo-hee became pregnant while taking care of her 60-year-old mother suffering from dementia and Parkinson’s disease. Kim had to wash and feed her mother. After giving birth to her baby, she struggled to take care of her mom.“When I suggested that she stay in a nursing home, she said she wanted to live with me forever. She cried for days,” Kim wrote on the website of Alzheimer’s Association Korea.
“I now fully understand the saying that families of dementia patients also fall ill.”
The deaths of the father and grandparents of Lee Teuk, the member of boy band Super Junior, re-exposed the agony of relatives of dementia patients.
His 59-year-old father allegedly strangled his parents, who had Alzheimer’s, to death and killed himself, according to police, Tuesday.
Such tragic cases involving dementia patients’ family members are not uncommon these days. Dementia patients pose an unbearable burden on their families amid a lack of social support for them.
Experts call for the overhaul of the whole system for the care of dementia patients.
“The support system for dementia patients has grown in size, but when you take a close look into it, it still has many problems in terms of content and quality,” said Lee Jin-myung, a director of the Alzheimer’s Association, a gathering of patients’ families.
The number of the patients has grown 680 percent over the past seven years, according to data from the Ministry of Health and Welfare. The number of dementia patients stood at 534,000 in 2012, up from 445,000 in 2009. This number is expected to top 1 million by 2024 given the growth trend over the past years.
Family members remain major caregivers of Alzheimer’s patients. According to a 2012 report by the Korea Institute for Health and Social Affairs (KIHASA), 72 percent of those aged 65 or over who need someone’s help to carry out daily activities ― including dementia patients ― had only family members as their caregivers.
Lee said that families have to take charge when dementia patients do not qualify for state-run long-term care insurance for the aged because it is too costly to have them in nursing facilities without contributions from insurance.
Dementia patients are evaluated for the severity of their illness, and only those given the top one of three grades can benefit from insurance.
Those in the early stage of dementia sometimes appear normal, and are not given a grade. This July, the government plans to create a fourth grade to offer support to a wider group of dementia patients.
Steps to lighten burden
However, the expansion of the insurance program alone is far from enough for the families of dementia patients.
After finding conditions of nursing homes too poor, some families take their dementia-struck members home. Current laws require nursing homes to assign one caregiver for two and half patients. At a patient’s home, at least one family member would be devoted to the patient.
In many cases, Korean culture that puts much importance on filial duty plays a role in families’ decision to keep patients at home.
A day after his unexpected suicide, according to news reports, Lee Teuk’s father was supposed to send his parents to a nursing home.
“I am taking my parents with me,” read the note that police found at the scene.
Lee Yun-kyung, the author of the KIHASA report, pointed out that the infrastructure to support dementia patients has, in fact, expanded, but the system that proactively finds and serves those left out isn’t established yet.
“When I read news about such family tragedies, I wonder why they couldn’t reach out to existing facilities that would help them out. We need to make the facilities ― and information about them ― more accessible.
“The elderly who haven’t had support from the government are actually afraid to knock on the doors of public organizations when they do not know about them,” Lee said.
The suffering of caregivers is an important issue that Korea must tackle because it can cause family tragedies including suicide, murder, physical abuse and neglect, experts say.
While such tragedies take place in different forms and accurate statistics aren’t available, research by the welfare ministry shows that 3,424 cases of abuse against the elderly were investigated in 2012 and nearly 23 percent of them ― or 782 cases ― were perpetrated against senior citizens suffering from dementia.
The U.S. isn’t much different from Korea in terms of the burden upon families in nursing dementia patients. According to a 2013 report by the U.S. Alzheimer’s Association, unpaid caregivers ― mostly family members and some relatives and friends ― accounted for 80 percent of care for dementia patients provided in the community.
Fewer than 10 percent of older adults were fully looked after by paid caregivers.