“My mother having dementia turned into a chance for us to relate to each other again and even have fun in each other’s company.”
That’s what film director Yuka Sekiguchi came to realize when she returned to Japan in 2009, after 29 years in Australia, to look after her 78-year-old mother, who was then in the early stages of Alzheimer’s disease.
She took the opportunity to film her mother on a daily basis as the disease progressed — in the home, at the doctor’s office, on the street and in parks.
“Mainichi ga Arutsuhaimaa” (“Every Day is Alzheimer”), a superb 93-minute documentary, is the film born of more than 100 hours of footage. This film, about someone in the family with severe cognitive impairment, is surprisingly full of laughs and touching intimacy.
The Alzheimer’s Association of Japan, established in Kyoto in 1980, is a nonprofit organization with 41 branches across the country. It deals with all aspects of dementia and care issues; oversees the publication of a monthly newsletter titled “Pole-Pole”; gives aid in services for sufferers and carers; conducts research; promotes awareness of the disease; and maintains active links with relevant government bodies.
The association has also spearheaded a drive to make people in the community more aware of what this disease means and does.
Until the 1980s, people in Japan generally strove to hide their relatives with dementia from the outside world. By and large, it fell on the spouse or the children to care for them — or the wife of a son whose parent had Alzheimer’s.
But caring for victims of this disease is no easy task. Many sufferers exhibit highly erratic, and often violent, behavior. They can easily fall into states of irrevocable depression. They will accuse others of harassing them or stealing from them. Consequently, many carers fall into depression, too.
On Aug. 24, the Ministry of Health, Labor and Welfare reported that more than 3 million people in Japan are suffering from dementia. That is 10 percent of the population aged over 64. The ministry estimates that this figure will rise to 4.7 million by 2025 — which will constitute 12.8 percent of the aged.
The situation worsened as a result of the Great East Japan Earthquake on March 11, 2011, particularly in the worst-affected prefectures of Fukushima, Miyagi and Iwate. On Sept. 15, 2011, the Mainichi Shimbun newspaper reported on a survey it conducted among dementia sufferers in hospitals associated with the Japan Psychiatric Hospitals Association in the three prefectures. Many sufferers, their families and supporting carers, found themselves in temporary prefabricated housing. That is no environment for proper care; and the result has been a worsening of the condition and, in some cases, suicide.
How will Japan be able to cope with caring for these people? Medical and care staff have to be trained to deal with sufferers who may wander away from the home or the care facility. They have to learn to seek out the things that their patients can do. The old methods of tying patients to their beds or treating them with disdain must go.
Yuka Sekiguchi’s mother will not admit that she has dementia, though her disease has progressed into its later stages. By early this year she had lost the ability to reason.
“My mother was an incredibly strong and independent woman,” says Sekiguchi. “She was as sharp as a tack and very capable. Even now you can see her running the gamut of emotions very clearly. Her emotional depth has remained in her brain, despite the disease.”
This is what children, above all, wish for their demented parent: To be the same person, to retain an individual identity, and to have dignity as a human being. And this is perhaps the hardest state to attain. Alzheimer’s is a progressive disease that presently has no cure. Yet there are ways to alleviate its symptoms and restore dignity to sufferers.
Dr. Ryuta Kawashima is a neuroscientist associated with Tohoku University. In 2001 he began research on brain stimulation using video games. The result was a multimillion-dollar windfall when his brain exercises became a hit product for the Nintendo DS, a dual-screen handheld game console.
It then occurred to Dr. Kawashima that these exercises might “light up the brain” for dementia sufferers. Together with Kumon Educational Japan, a large company that helps children master basic intellectual skills, he devised a program he called Learning Therapy to restore some brain function to dementia sufferers. To date this has helped more than 18,000 people in Japan to return, in some degree, to their former selves.
For six months in 2011, the Eliza Jennings Home, a care facility in Cleveland, Ohio, in the United States, conducted a trial of Learning Therapy with 23 “learners,” as the program calls them. The staff, referred to as “supporters,” offer 30-minute-long sessions, with exercises of graded difficulty, guiding two learners at a time.
I have just finished work on the script of a documentary film about the program at the Eliza Jennings Home. The film crew followed the 23 learners for nearly a year. I was amazed to see that marked progress was made in all 23.
Some of the worst sufferers, who in the beginning could not remember their children’s names, couldn’t dress themselves or find the bathroom, were, after six months of brain exercises, recalling past memories with accuracy, taking up old hobbies like knitting, paying attention to their grooming and — what’s most important — enjoying life.
Over recent decades, there has been a significant change in Japanese attitudes to dementia. The 2006 feature film, “Ashita no Kioku” (“Memories of Tomorrow”), based on Hiroshi Ogiwara’s 2004 eponymous novel, took up an even braver topic: early onset Alzheimer’s. Acclaimed actor Ken Watanabe, star of “The Last Samurai,” “Memoirs of a Geisha” and “Letters from Iwo Jima,” played a top advertising executive who, at age 49, gradually begins a decline into dementia. This profoundly moving film opened the eyes of many people in Japan to what this disease means for sufferers and their loved ones.
“We wanted to present the disease in a way that sufferers would believe the story,” says Watanabe, “and also in a way that those who had dementia wouldn’t be afraid.”
Last month, the Asahi Shimbun newspaper ran a series of daily articles on Alzheimer’s on the front page of its evening edition. I was impressed with what author Toyoji Oda wrote in that series about his visit to a care facility in Kyushu’s Miyazaki Prefecture where volunteers sit and listen to sufferers talking about themselves.
“When people with dementia talk about dementia, they cease, for that time, to have it,” Oda observed.
Yuka Sekiguchi speaks of “openness” as a key to the change in society’s attitudes. She hides nothing, whether it relates to her mother or herself. Her mother, for instance, has ceased to take baths. In hygiene-obsessed Japan, most people would be loathe to admit this. But this gives her mother the opportunity to be wiped down by a carer.
“My mother really likes it when good-looking young male carers come to her with towel in hand,” says Sekiguchi.
She laughs and continues … “I wanted to share the world of my mother’s dementia, to probe in film, with all my might, the questions: What does it mean to be ‘family'; and, above all, what is the true nature of human dignity?”
“Everyday is Alzheimer” movingly reveals the answers to those questions.