Faded Memory

By Wang Hairong

Faded Memory

By Wang Hairong

Sufferers of Alzheimer’s disease and their families need support

Yang Jihong, who recently planned a program about Alzheimer’s disease for China Central Television (CCTV), cherishes many memories of her father.

One of her fondest memories as a child was of her father riding a bicycle, carrying her mother, her two brothers and Yang to a river, where they swam and caught fsh and shrimps.

Yang said she regrets that she can no longer share these sweet memories with her father, whose memory has been erased by Alzheimer’s disease.

Yang’s father has suffered from the disease for several years. He is now bed-ridden, unable to speak with or recognize anyone.

A common symptom of Alzheimer’s disease is dementia. According to doctors, in the early stage of the disease, sufferers tend to forget recent events, and as the disease progresses, they may lose their long-term memory. Eventually, as their bodily functions deteriorate, patients will die.

The Chinese Committee for Alzheimer’s Disease International estimated that in China, more than 10 million people suffer from the disease. The prevalence rate of Alzheimer’s is more than 6.6 percent among seniors above 65 years old, and roughly 33 percent for those above 85. The mean survival time for patients is 5.9 years.

In recent years, patients of Alzheimer’s disease accounted for more than half of seniors’ visits to the No.7 People’s Hospital in Hangzhou, east China’s Zhejiang Province, also known as Hangzhou Psychological Health Center, according to Zjnews.com.cn, a local news portal. Other major psychological problems troubling seniors are depression and empty-nest and retirement syndromes.

Family burden

Alzheimer’s disease is widely known for bringing diffculties to both patients and their families. Yang said that her experience was traumatic.

Yang’s father used to serve in the army. Yang said that he was kind and strong and kept good habits. After retirement, Yang’s father often sat on the balcony at his home for hours, watching people playing football in a nearby soccer feld. He was so engrossed in watching the sport that he seldom communicated with other family members. The family found him becoming egocentric and estranged.

Yang’s father suffered a stroke in 2004 at the age of 75. Days later, he recovered and had no problem walking and talking, to the relief of his family.

Yet the man became more picky and irritable. He sometimes embarrassed guests by fumbling the gifts they brought to his home, and he even once told Yang’s mother to leave the family.

In 2008, Yang’s father suffered another stroke and lost consciousness while watching TV, and didn’t reach the hospital until 40 minutes later. After being in coma for two days, he woke up. He was able to speak but couldn’t walk for another two months.

After the second stroke, Yang’s father’s hands and head began to shake involuntarily. He once got lost in a forest not far away from home. After he was brought back home, he told the family that he had seen his brother and sister-in-law, both of whom had passed away some 40 years ago. The man also repeatedly forgot the ages and names of his grandchildren.

Although Yang’s father had changed, the family thought it was all part of getting old. It did not occur to them that he had Alzheimer’s disease until a family friend mentioned the disease’s symptoms.

Yang regrets not being aware of the symptoms earlier. She said that had she and her siblings known that, they wouldn’t have been so upset at what they perceived to be their father’s selfishness and would have given him more care.

In addition to causing emotional turbulence, Alzheimer’s disease is also a physical and financial burden. In some cases, family members have to quit work, cut back on their hours, or take a less demanding job to care for their loved ones.

Yang’s father has been hospitalized for two years, during which time the family accrued big medical and nursing bills.

Yang Guoyuan is an 82-year-old sufferer of Alzheimer’s disease in Hangzhou. Although he once had a sharp mind and used to work in a prestigious research institute, he now cannot remember his home address.

Yang Guoyuan’s wife Wu Lianfang has to look after him full time. His son and daughter also take leave from work to care for him, which resulted in the son losing his job and the daughter taking a salary cut.

The Chinese Committee for Alzheimer’s Disease International estimated that in China, more than 10 million people suffer from the disease. The prevalence rate of Alzheimer’s is more than 6.6 percent among seniors above 65 years old, and roughly 33 percent for those above 85. The mean survival time for patients is 5.9 years

In an unusual case, Chen Binqiang, a 37-year-old middle school teacher in Pan’anCounty, Zhejiang Province, has managed to juggle his teaching job and care for his mother, a victim of Alzheimer’s disease.

INSTITUTIONALIZED CARE: A nurse at Shandong Jinan Mental Health Center talks with an inmate. The public institution primarily serves elderly patients with mental problems, including sufferers of Alzheimer’s disease

Chen teaches at Lengshui Town, about 30 km away from his home in Pan’an County seat. He used to reside in a school dormitory during school days and return home only on weekends.

In 2007, Chen’s mother was diagnosed with Alzheimer’s disease. His father had already passed away and his two sisters were married and lived far away. Chen’s wife, a kindergarten teacher, had to work and take care of their son. So Chen decided to take his mother to the school dormitory to look after her.

For five years, Chen has been teaching full time while helping his mother with personal hygiene and meals between classes and after school.

Social concern

Alzheimer’s disease was considered a private family affair, and families tended to keep quiet about it for fear of stigma. But as the Chinese population ages, more attention has been paid to seniors’ problems, including Alzheimer’s disease.

As of the end of 2011, China had more than 185 million people, or 13.7 percent of the country’s total population, aged 60 or above, according to data released by the Ministry of Civil Affairs on March 1. Li Liguo, Minister of Civil Affairs, said that by the end of 2015, the country will have 221 million over 60, 24 million of whom will be over 80 years old.

In September, several media outlets, including CCTV, proposed for a change to the Chinese name of Alzheimer’s disease. The disease’s Chinese name is literally senile dementia, which is considered discriminative.

Wang Yuchu, a commentator for Youth. cn, an Internet portal sponsored by the Central Committee of the Communist Youth League of China, said that caring for seniors involves more than simply changing the name of the disease.

Wang said that families have difficulty taking care of sufferers of Alzheimer’s disease at home, whereas institutions catering to the elderly are also ill prepared.

Publicly run elderly care institutions in China are chronically overcrowded and getting a spot can be diffcult. Most institutions refuse sufferers of Alzheimer’s disease.

According to China Daily, in a country where millions suffer from dementia and Alzheimer’s only a few public nursing homes accept dementia patients, among them the Beijing Songtang Caring Hospice, Beijing No.3 Social Welfare Institute and Shanghai No. 3 Social Welfare Institute.

“We only admit those who ft our admission standards,” said Zhou Ka, Vice President of the Beijing No. 1 Social Welfare Institute, a highly sought-after public facility. “We don’t admit elderly people with psychosocial diseases such as Alzheimer’s disease.” Zhou said that the institute has neither the facilities nor appropriate professional staff for such patients.

Many private nursing homes also shut their doors to sufferers of Alzheimer’s disease due to the challenging nursing requirements. As a result, most patients are confned to their homes, or even worse, to mental hospitals.

In April, the Beijing Civil Affairs Bureau said that it would make policy requiring each of the city’s 16 districts and counties to build a special nursing home primarily to cater to sufferers of Alzheimer’s disease.

“The government should actively work to ease the burden on patients’ families,” Wang said.

(See pages 42-43 for more on Alzheimer’s disease)

wanghairong@bjreview.com