Second in a three-part series
Whenever her dementia-afflicted husband went to bed, Reiko Ozawa would sigh in relief and sometimes wish he would never wake up.
That was because once he did, a living nightmare would await her, as her husband, Kunio, would tend to wander off, rant at her and even suffer hallucinations.
“My marriage with you was the biggest mistake of my life,” Kunio, who passed away six years ago at age 64, once shouted at Ozawa in one of his worst outbursts. It didn’t take long before he reverted to what appeared to be a childhood mentality, calling Ozawa “mom.”
So far, so typical for dementia patients and the people who look after them.
Except that by the time all these symptoms came to light, Kunio was still in his late 50s, four years after he was first diagnosed with Alzheimer’s at age 54 in 1998.
“We were all shocked, because back then, being diagnosed with dementia at such a young age was utterly inconceivable,” said Ozawa, 66, who now heads a self-help organization called Hoshi no Kai (roughly Group of Reshining Stars) for early onset dementia patients and their families.
Early onset dementia affects people younger than 65, but experts say the belief that dementia only strikes seniors remains pervasive, obfuscating the plight being suffered by the condition’s younger patients.
Going by the numbers only, there are few patients with early onset dementia. A 2009 Health, Labor and Welfare Ministry survey found an estimated 37,000 such patients, with some as young as 18. In contrast, the number of dementia patients older than 64 hit 4.6 million nationwide in 2012, when the ministry last ran a survey.
Like their older counterparts, victims of early onset dementia show such symptoms as uncharacteristic irascibility, memory loss and an inability to communicate verbally. Most typically, early onset dementia begins in their 50s.
No fundamental cure or prevention measures exist. Studies suggest men are slightly more susceptible than women, in contrast to dementia patients in the 70s and older, among whom women have been shown to be more vulnerable.
The government set up a call center in 2009 geared toward families of early onset patients and made it easier for the patients to use the government-run nursing insurance system.
One of the biggest problems facing people with early onset dementia is that severe memory loss will force almost all of them to leave their jobs.
Because the majority of early onset patients are male and in many cases the household breadwinner, Ozawa says member wives in her organization often speak of the looming financial woes stemming from the sudden loss of income.
Ozawa said she herself lived with the fear of poverty when her husband, who was formerly employed by a foreign-owned pharmaceutical company, was pressured into quitting when he started showing symptoms.
Without any other sources of income, the Ozawas ended up selling the house they had built just five years before because they couldn’t afford the mortgage.
Another difficulty typical of early onset patients has to do with their relative youth and physical strength. Families and experts point out that senior care facilities often refuse to admit early onset patients out of fear they will be aggressive toward nurses and fellow residents.
In one case, 64-year-old Emiko Takahashi, who heads a self-help group called Chiisana Tabibito Tachi no Kai (A Group for Small Travelers), said her husband, Akito, diagnosed with Alzheimer’s at 57, was kicked out of a nursing home after accidentally knocking down more senior residents.
According to Yukiko Komai, head of a Tokyo-based public support center for early onset patients, these facilities think of seniors in their 80s or 90s as their primary patrons, so their services often fail to cater to younger people like Akito.
“A man in his 50s, for example, would no doubt feel uncomfortable being forced to sing nursery rhymes and do origami (with other residents). But the reality is that few of these nursery facilities have expert knowledge about how else to entertain and accommodate him,” Komai said.
Both Ozawa and Takahashi agree that early onset patients are so socially stigmatized that their family members often recoil from publicly talking about what they are going through.
Ozawa admits that she tried to keep her husband’s dementia secret for a long time by lying to her neighbors and saying every sign of his senility stemmed from a stroke he had earlier.
Her coverup came to a miserable end when her husband one day woke up hallucinating and began to shout profanities from a window — with a frying pan in his hand — at an imaginary “group of thieves” he said were lurking outside. Only after that incident did Ozawa accept that she could hide the truth no longer.
“The way people see it, dementia is something that only concerns much older people. So I was afraid if we came out, people would start speculating that I’m somehow responsible for what happened to my husband, thinking, perhaps, I must have done something really evil — like poisoning his food or something — to bring such a peculiar illness to him,” Ozawa said.
Takahashi agrees. “Even if we come out, people wouldn’t be able to think of anything else to say other than some banal words of consolation,” let alone give her constructive medical tips, she said, “because they just don’t know about this disease.”
Lack of knowledge on early onset dementia plagues local bureaucrats as well, said Akihiko Takahashi, a colleague of Emiko Takahashi at the Nakano Ward Office who co-heads her group.
There are a batch of public assistance programs that early-onset patients could qualify for, including a disability pension. But Akihiko said local officials sometimes mishandle or possibly even trivialize family inquiries in a misguided belief that there are no public welfare services they can refer them to, and turn them away.
“It’s sometimes the case, though, that officials are wrongfully denying the families access to public aid they actually qualify for because of their poor knowledge,” the ward official said.
Having co-headed Takahashi’s group for the past year, Akihiko said that he realized early onset patients, for all their disabilities and deteriorating mental capacities, are not entirely incompetent and can be entrusted with certain undemanding job responsibilities.
“Business managers tend to think the moment their employee is diagnosed with dementia, that person is so far gone he would never be able to function normally. But if only they manage to get past certain inconveniences that the condition poses, I’m sure they’ll agree he’s still capable,” Akihiko said.
Ozawa echoes this view. At no time in her 11 years of tending to her husband did it ever cross her mind that he became someone else or disintegrated into anything less human, Ozawa confidently said.
“Looking back, I remember there were always those brief moments when he suddenly turned lucid and joked around like usual. I took it as evidence that somewhere deep down in his mind, his true self was always there, unhurt, no matter how incapable he became of expressing himself on the surface.”