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Living with dementia: Caring for a loved one

China

2019-03-15 18:05

China is a rapidly-aging society. In less than 40 years, it's likely that every third person will be over 60. This creates some major challenges, one of which will be dealing with an expected rise in the number of people with dementia. There are currently an estimated nine million sufferers nationwide. A majority of them are looked after by family members.

Being a carer for a loved one is a full-time job. It's particularly taxing when both carer and patient are in their 80s. Sun Yuhua was diagnosed with dementia almost a decade ago, when she was in her mid-70s. As her son felt unable to look after her full-time, the job fell to her husband, Zhou Zhensheng. Even though he's now in his mid-80s, he's providing the round-the-clock care his wife requires. His life revolves almost entirely around her illness.

Even before taking on this stressful role, Zhou faced a major hurdle; that of getting his wife diagnosed in the first place.

"In 2009, I started noticing something was up," he says. "I attended the support group every month for a year. On my own. She didn't want to go. She'd ask: 'What's it for?' I'd say: 'dementia.' She'd answer: 'I don't have dementia!'"

Her case is not unusual. A study conducted by Dr. Wang Huali from the dementia Care and Research Centre under Peking University's Institute of Mental Health found that, for two-thirds of patients who participated, it took longer than a year to be diagnosed after the first symptoms appeared. On average, Dr. Wang finds that the diagnosis takes two years. But as she points out, this doesn't reflect the situation in all of China.

"The prediction from the results is much more optimistic than the real situation," Dr. Wang says, "because in China there are still a lot of low-resource areas, where probably the time taken to seek diagnosis will be longer than what we have found in this study."

Sun Yuhua used to work in a library and generally managed all the housework. Since her diagnosis, she and her husband have had to adjust to an entirely new dynamic in their relationship. Before retiring, Zhou was a petroleum industry specialist. The change from working professional to carer hasn't been easy for him. He had to learn to cook in his 80s. And under the watchful eye of his wife, no less. It isn't easy for her, either, having to let her husband take over, after she spent decades running the household.

Then there is the sad truth that Zhou has to remind his wife daily of simple things, such as the fact that they are married... Often even in the middle of the night.

"She'll ask, 'Are you a man or woman?' And I answer: 'A man.' 'Why's there a man in my bed?' I'll say: 'We're married, look at the pictures.' She'll look at them, and go back to sleep," said Zhou.

While Zhou has come to terms with the fact that his wife's memory will never return, and in fact will only deteriorate as time passes, his biggest concern is what will happen when he is no longer around.

"That'll be a big problem. Right now, I'm completely responsible for her, her physical state, all her medical treatment, her daily needs. It's all right here, in my head."

Rediscovering China is a 30-minute feature programme offering in-depth reports on the major issues facing China today. It airs on Sunday at 10.30 a.m. BJT (02.30 GMT), with a rebroadcast at 11.30 p.m. (15.30 GMT), as well as on Monday at 8.30 a.m. (00.30 GMT) and Friday at 1.30 p.m. (05.30 GMT).