Japan works to help people with dementia pursue active lives

A session of a so-called dementia cafe is held in Shinagawa Ward, Tokyo. The Japan News/Asia News Network

TOKYO — Dementia affects millions in Japan and around the world. Estimates by institutes such as the University of Washington say there were 57 million people with dementia worldwide in 2019, with that number expected to reach 153 million in 2050.

Creating communities where people with and without dementia can all live comfortably is a challenge for Japan and the world.

In 1972, the novel “Kokotsu no Hito” (The Twilight Years) was published. Written by Sawako Ariyoshi, it begins with an elderly man walking in the snow in a frenzied manner and without wearing a coat. His son’s wife rushes to stop him. She speaks to him but feels that his response is not really a response to her remarks.

The novel depicts the anguish of the family members of a person with dementia, due to symptoms such as auditory hallucinations, and is said to have contributed to the image of dementia among Japanese people.

When the book was published, dementia was called “chiho” in Japan. The current term “ninchisho” came into common usage instead in 2004, less than 20 years ago.

The Health, Labor and Welfare Ministry set up a study group to make the terminology change, as “chiho” was sometimes used in a derogatory sense and the ministry thought that continuing to use it might increase prejudice against the condition.

The group solicited opinions from the public about what should replace “chiho.” It is said that “ninchisho,” or cognitive disorder, was selected from among candidates such as “monowasuresho” (forgetfulness syndrome) and “kiokusho” (memory function disorder).

A report by the study group stressed that it is important to dispel misconceptions and prejudice regarding dementia.

By 2025, the number of people with dementia in Japan is expected to reach about 7 million, or one out of every five elderly people who are 65 or older.

A survey commissioned by the ministry estimates that about 40% of people in their late 80s and 60% of people in their 90s or older in Japan develop dementia. This is another aspect of “the era of a 100-year life.”

Recently, the quality of care for dementia has improved. By gaining appropriate support, more and more people with dementia have become able to pursue a daily life that is not as affected by having the condition.

Prevention and harmonious living

In 2019, the government drew up a framework for promoting measures for dementia, with “prevention” and “harmonious living” as its two pillars.

To create a society in which people with dementia and those without can live life with hope, the government is promoting such projects as training supporters with correct knowledge of dementia to support patients and their families.

The government also set a goal of having all municipalities host a so-called dementia cafe.

Dementia cafes are modeled after the Alzheimer Cafes, a movement that began in the Netherlands in 1997.

In Japan, the movement began to spread around 2012. Dementia patients, their families and welfare specialists gather once a month or so at local community centers and elsewhere to enjoy conversations and exchange information. There are about 8,000 dementia cafes across the nation today.

Many people quit their jobs or give up their hobbies after developing symptoms, and end up housebound. Dementia cafes are meant to be a place for dementia patients to stay engaged with their local community and prevent them and their families from becoming isolated.

Masahiro Shigeta, a professor at The Jikei University School of Medicine and president of The Japanese Society for Dementia Care, hosts a dementia cafe in a building in Hiratsuka, Kanagawa Prefecture, that used to be his parents’ home. It was renovated to serve as a cafe.

“I hope that by having a dementia cafe in the community, local people will grow old without anxiety,” Shigeta said.

Pandemic aggravates dementia

The novel coronavirus pandemic has caused the elderly to refrain from going out and restrict their interaction with others, resulting in the progression of dementia.

According to a survey conducted by Hiroshima University and The Japan Geriatrics Society from October to December last year, more than 50% of about 700 facilities, including special nursing homes for the elderly, said that the change in their users’ daily lives due to the pandemic had aggravated their dementia.

In a survey conducted among care managers who support home care, more than half of the about 250 respondents similarly indicated a negative impact.

“The prolonged novel coronavirus disaster has aggravated the decline of cognitive and physical functions,” said Shinya Ishii, a specially appointed professor of geriatrics and dementia at Hiroshima University who was in charge of the survey.

“The central and local governments need to make it easy for such facilities [as care homes for the elderly] to prevent virus infection and ease restrictions on visits and outings simultaneously, by presenting criteria for making such decisions to these facilities,” Ishii said.

Patients convey thoughts, share experiences

To help eliminate misconceptions and prejudice regarding dementia, an increasing number of people with the condition are sharing their experiences and thoughts.

Akio Kakishita, 68, of Shinagawa Ward, Tokyo, was appointed as a Hope Ambassador by the Health, Labor and Welfare Ministry in 2020. He works to spread correct knowledge about dementia, mainly through lecture meetings and letting people know that he continues living actively even after starting to develop the condition.

“I hope to be able to encourage people in the same situation,” Kakishita said.

Atsushi Shimosaka, 49, a Kyoto Prefecture native with juvenile dementia, takes photos of casual everyday moments and shares them on social media.

An increasing number of municipalities are enacting their own dementia ordinances to help the idea of harmonious living among people with dementia and those without take root in local communities.

People with dementia are often involved in these initiatives from the planning stage. An ordinance that took effect in Kyotango, Kyoto Prefecture, in March incorporates the opinions of people with dementia, who want their local community to be a place where they can casually interact with other people based on an understanding that anybody can have the condition.

Upon hearing that someone has dementia, people often try to help them before considering whether they really want or need assistance.

What people with dementia can and cannot do depends on each person. The appropriate support and ideas of those around dementia patients helps them live as they have before.

Hopefully, this way of thinking will become the norm in society.

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