First in a three-part series
Life was relaxing and peaceful for Shigeru Suzuki until six years ago, when he realized that Hiroko, his wife of more than 30 years, was having problems doing simple chores.
The 77-year-old former employee of a major civil engineering firm recalls that, at first, he couldn’t understand why Hiroko couldn’t sort clothes as told. One day, he got irritated and snapped at her, pressing her to explain why she couldn’t just remember to put the clothes away. Hiroko then tearfully replied: “It’s not like I want to be forgetful.”
Suspecting something was wrong, Shigeru took her to a neurologist, who said she was experiencing the early stages of Alzheimer’s disease. Little did he know back then that her condition would soon deteriorate to a point where he would have to do everything around the house, as well as attending to her daily needs, including dressing, feeding and bathing her.
“I was a typical husband (in Japan), having delegated all of the household duties to my wife,” Suzuki said recently at their home in Kitaurawa, Saitama Prefecture. “But little by little, I found myself having to take over, as her condition worsened.”
Stories like Suzuki’s are not uncommon in a country with a rapidly graying population, where 1 in 4 people aged 65 or over has some form of dementia. An estimated 4.62 million people in Japan are suffering from the degenerative disease, while 4 million others have “mild cognitive impairment,” a condition likely to progress to full-blown dementia, according to a 2013 study commissioned by the Health, Labor and Welfare Ministry.
Recent high-profile cases show that, despite government efforts to improve the lives of people with dementia, the illness — which often starts as memory lapses and then progresses to more severe impediments such as losing track of time and place, and loss of mobility — takes a heavy toll on patients and those who care for them. With no miracle treatments in sight, and with good specialist doctors in short supply, the burden of care falls primarily on family members, many of whom are often aging and saddled with their own health concerns.
According to the 2013 health ministry study, Alzheimer’s is the most prevalent type of dementia, affecting 67.2 percent of patients. Nearly 20 percent have vascular dementia, caused by strokes. The third most common type is Lewy body dementia, which plagues 4.3 percent of all patients, and is closely associated with Parkinson’s disease.
The study also found women were more susceptible, particularly those aged 85 and above. In fact, among 100-year-old women, the likelihood of dementia is nearly 100 percent, said Dr. Yuichi Sugai, a dementia specialist at the psychiatry division of Yokufukai Hospital in Tokyo.
“What it all means is, in the aging society, men (husbands) would be most often taking care of women (wives),” he said. “In clinical settings, too, I see many men who are doing the housework and taking care of their wives.”
Sugai added that, while research into understanding dementia has made great advances in recent years, treatment options are limited. Currently there are only four kinds of medication available worldwide, Sugai said, noting that none is effective enough to stem the progress of dementia.
“They are not drugs to cure dementia,” he said. “They are known to be 30 percent effective, meaning that they can only slow its progress.”
In addition, attempts by pharmaceutical companies over the past decade to develop vaccines for Alzheimer’s have hit a snag, due either to side effects or limited effectiveness, he said.
“Medicine has come closer to nailing the mechanism of dementia, and many molecular-level studies are being done,” he said. “But treatments are needed right now.”
The shortage of medical experts is also a big concern in Japan. Some of the most troubling symptoms of dementia, such as aggressive behavior, hallucinations, agitation and wandering off, are noncognitive problems known as BPSD, short for “behavioral and psychological symptoms of dementia.” Patients with BPSD often undergo a sudden change of personality, becoming abusive and even violent.
These symptoms, which vary widely among individuals, can be controlled with certain psychoactive drugs, but the dosages and combinations must be carefully monitored and adjusted, Sugai said. To make matters worse there are only 1,200 dementia specialists nationwide, not nearly enough to cope with all the patients, he added.
The issue of patients wandering off and getting lost came to the fore last month when NHK reported on a 67-year-old woman in an advance stage of dementia. Police found her roaming in Gunma Prefecture in 2007. They were unable to identify her, and she was then placed in a nursing home in the area.
Her husband contacted the broadcaster the day after the program aired, and was reunited with her for the first time since she vanished from their home in Tokyo’s Asakusa district.
Had police not mixed up her name, she could have been located much sooner. According to NHK, the woman’s name, Mieko Yanagida, was written on her underwear. But police identified her as “Emiko” in notices sent out to other departments in an effort to find out where she had come from.
It would not be surprising if more cases like Yanagida’s come to light. The National Police Agency said last month that 10,332 dementia patients were reported as missing in 2013, up 715 from the year before.
Shigeru Suzuki confides that the roughest part about caring for his wife is having to constantly monitor her toilet needs. When he doesn’t take her to the toilet at the right time and she ends up soiling her diaper, he has to clean her by bathing her, which is a physically and mentally taxing task.
“I’ve become very sensitive to odors,” he says, noting that he is on the lookout for signs of trouble. “I wish some company would come up with an odor sensor-equipped alarm.”
Still, he says he is fortunate because Hiroko, 72, has stayed calm despite the disease and happily eats everything he prepares for her.
Shigeru, who doesn’t depend on any of his three grown-up children for support, says he keeps his sanity by occasionally turning to outside help. He asks staff from nearby day care facilities to pick her up and take care of her three times a week, and uses “short-stay” overnight services once a month. That way, when Hiroko is in the hands of professionals he has time for himself, to get together with old friends or go on fishing trips. Such services are covered by the public nursing insurance plan and partially subsidized by the government.
Still, the list of what she can no longer do grows daily. Hiroko, who used to love golfing and would often drive on her own to golf courses, now must use a wheelchair.
On a recent visit, she was reticent, her expression mostly blank, and she often dozed off while Shigeru was talking. But when her husband was away, she became visibly nervous, her eyes darting around in search of him. Shigeru would try to quell her anxiety by telling her to wait, before leaving her, even for a second.
Even so, Shigeru seems to be taking the progression of her illness in stride, and, for now at least, he himself remains in good health.
“What truly amazes me is that, we can still communicate, and she understands my jokes,” he said. “When we go shopping for groceries, and when I try to buy beefsteaks, she asks me, ‘Is it OK to buy that much?’ So I tell her, ‘Oh, this morning I had a dream about having a mint of money.’ Then she laughs.
“She misses me when I’m away, and she is happy when I touch her. So I try to hug her when we are watching TV together. In a sense we are more affectionate to each other now. We still have emotional bonds. It’s not like I’m living with a doll.”