Shinobu Yamanaka apologized the moment this reporter arrived for an interview at a day care facility in the city of Konan, Kochi Prefecture, one muggy morning in July.
“Sorry, I had completely forgotten about it,” she said with a smile at Day Service Happy, a traditional Japanese-style house converted into a day care center for people with dementia and other health conditions in need of nursing care. “I must leave for another appointment at a local elementary school soon.”
Yamanaka, a vivacious 46-year-old woman who has her short hair dyed ash blonde, has early-onset Alzheimer’s. She often has memory lapses like the one that morning, she later confided. But it all turned out OK, as she welcomed me anyway and allowed me to tag along to her appointment with the school officials.
She broke the norm last October when she opened the facility despite having been diagnosed with the neurodegenerative disease three years earlier. As director of Day Service Happy, she oversees its operations, serving up to eight people six days a week from 9:30 a.m. until 4:30 p.m.
The mom of three is also a trailblazer in the sense that she actively seeks opportunities for the center’s users, whom she calls “members,” to engage in paid volunteer work outside the facility. Thanks to Yamanaka’s efforts, the center now has arrangements with several local businesses, through which members regularly visit their premises and undertake jobs such as car cleaning and fruit harvesting.
Yamanaka represents a new generation of people with Alzheimer’s in Japan who are trying to change not only the environment in which people with dementia are cared for but also the way society interacts with them, said Tomoyuki Yabuki, associate professor of dementia policy at the University of Kochi, who has studied patient-driven initiatives to support people with dementia.
Japan has an estimated 6 million people age 65 and older with dementia, which is a general term that refers to the loss of memory and other cognitive abilities that are severe enough to interfere with daily life. The number of people with such a condition could increase to 7 million people, or 1 in 5 of those 65 and over, in 2025, according to the health ministry.
Alzheimer's, thought to be caused by an abnormal buildup of certain proteins in and around the brain, is the most common form of dementia, accounting for two-thirds of all cases in Japan. The rest are made up of several other types, such as vascular dementia, dementia with Lewy bodies and Parkinson’s disease accompanied by the loss of cognitive functioning.
Currently there is no cure, though expectations are growing for a new type of Alzheimer’s medication expected to slow, though not stop, the progression of symptoms. On Monday, a health ministry panel greenlighted the approval in Japan of lecanemab, though it will be used only for those with early-stage Alzheimer’s. That follows full approval in the U.S. from the Food and Drug Administration last month.
While advances in medical interventions offer hope, experts stress that a supportive network in the community is just as important for the well-being of people with dementia.
“Over the last several years, a group of people with dementia have started to not only come out and speak about their experiences but also to form a group to voice their needs and offer peer support,” Yabuki said. “I think Shinobu-san has taken the movement a step further, trying to establish a model that prompts everyone in society, including the local community and family members, to change.”
It surely wasn’t smooth sailing for Yamanaka, who said she started having memory issues as early as 2016 but didn’t get diagnosed until 2019. Back then, she was a single mom raising three school-age boys and working as a mobile phone saleswoman.
“I started having trouble remembering what time my youngest son, who was a second or third grader, went to school,” she said. “I couldn’t call up the names of my colleagues, and completely forgot my appointments with clients — just like I did today.”
When she went to get her condition checked by a neurologist, she was told she was clinically depressed.
“It was actually that diagnosis that made me depressed,” she recalled. “It didn’t feel right to me.”
Then in December 2018, the family was watching a TV drama series about a young woman with early-onset Alzheime’s disease. Her oldest son said his mom behaved exactly like the protagonist in the drama and asked her to go see a doctor. When Yamanaka finally got the Alzheimer's diagnosis, she felt relieved, she said.
But then as she searched for information about the disease on the internet, she was overcome with a sense of despair.
“I couldn’t find anything but negative information, like how you would be bedridden soon or only live for three or 10 years. ... I became extremely anxious. I wondered how in the world I, as a single mom, would pay for the tuition of my oldest son, who had just been admitted to college.”
Her outlook dramatically changed, she said, after she became connected to Tomofumi Tanno, who was diagnosed with early-onset Alzheimer’s at the age of 39. Tanno, who works at a car dealership, started a "peer support" program where people just diagnosed with Alzheimer's can meet and consult with volunteers who have the same condition and are on standby at the hospital.
When Yamanaka sent him a message on social media, Tanno mailed her a book he published in 2017, titled “Egao de Ikiru” (roughly translated as “Living with a Smile”).
“By the time I finished reading the book, I was smiling,” she said. “I realized everything — whether I would live in despair or with smiles — was really up to me.”
Yamanaka decided to set up a care facility herself, hoping to create a space where caregivers and facility users could interact as equal partners and where the users could engage in activities they chose, instead of activities forced upon them by facility operators.
In addition to the paid volunteer opportunities, Yamanaka is trying to expand the center's engagement with society further. She visited the school that day to request that the center's members be accepted as unpaid volunteers, specifically by showing up at the school’s “greeting” campaign once a week. Such campaigns, which are common across the country, help facilitate exchanges between adults in the community and children on their way to or from school.
During a meeting with the school, she used her 15-year experience as a cellphone saleswoman to her best advantage, making a compelling pitch about how crucial it is that people with dementia are integrated into the local community.
“I created a care facility for people with dementia, a first in the nation, perhaps even a first in the world, that is run by someone with the condition,” she told the officials. "I want to demonstrate that, even after developing dementia, you can fully participate in society. ... I think it’s also important for the children to have us around them — like community grandmas and grandpas.”
The principal and a male teacher present were visibly moved, taking up Yamanaka’s offer and even asking her to come back and give a lecture in front of the students.
Indeed, opportunities to interact with people in the community with dementia are still rare, and prejudice and stigma around dementia abounds. Many people with the condition are cut off from society, unable to speak publicly about the disease or even share their experience among people with the same condition, said Atsushi Shimosaka, who lives in the city of Kyoto. He was diagnosed with early-onset Alzheimer’s disease in 2019 at age 46.
In some cases, family members of those with Alzheimer’s oppose having the diagnosis known by others, Shimosaka said. Having co-authored a book on his experience with his wife, titled “Kioku to Tsunagu” (roughly meaning “Connecting with Memory”), in 2022, Shimosaka said he wants to raise public awareness of — and de-stigmatize — the disease, especially younger onset dementia.
According to a 2020 study, the number of people in Japan with early-onset dementia, which refers to development of the condition under age 65, was estimated to be 35,700, a majority of whom had Alzheimer’s. Post-diagnosis measures for such people are not sufficient, Shimosaka said.
“Many people in society think that, once you develop dementia, you will lose all of your abilities,” he said. “I felt the same way before. But getting a diagnosis does not mean you suddenly won’t be able to work. It would be good if there’s some kind of support that allows people who want to keep working to do so.”
Shimosaka noted that, to overcome stigma, more places are needed for people with dementia to share their experiences.
“There are few places where people with the disease can meet,” he said. “In Kyoto, a dementia cafe run by the local social welfare council meets only once or twice a month and attracts three or four people only, and the participants are always the same. But I understand there are 600 or 700 people who have been diagnosed with early-onset Alzheimer’s in the city alone.”
Yamanaka, who is now remarried, said she gets a lot of support from her family and other staffers at the facility. She said she hopes to create four more facilities like Day Service Happy in Kochi. The current facility, users of which are subsidized under national nursing care insurance, can serve Konan residents only.
“I want to create more places where people (with dementia) in other communities would feel at home, without feeling isolated,” she said.
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