Kazuo Hasegawa’s life and career with dementia: Late doctor advocated building supportive communities for afflicted people
December 9, 2021
Psychiatrist Kazuo Hasegawa, a leading specialist in dementia, passed away on Nov. 13 at the age of 92. Hasegawa announced in 2017 that he had dementia himself, and during his life he shared various thoughts based on his long-time commitment to people with the condition and his personal experience with it. Those words can guide people today, who are living in an era in which one in five elderly people are expected to develop dementia.
This article will focus on some of his words, and consider how elderly people should be diagnosed and treated.
A peaceful end
“About a week before he died, I told my father on his sickbed, ‘We had a good time’ and hugged him,” said Mari Minamitaka, a daughter of Hasegawa. “He nodded and seemed to be crying and smiling at the same time. It didn’t matter that he had dementia. I felt that we could convey our feelings to each other without words.”
Hasegawa was hospitalized due to ill health three weeks before his death. Although he had pneumonia and hyponatremia, he did not suffer in his final days and died quietly.
Hasegawa graduated from the Jikei University School of Medicine in Tokyo and then studied in the United States before starting his work with dementia in the late 1960s. At that time, people with dementia were called “chiho” in Japanese, which means senile. It was common for people in this condition to be isolated or physically constrained at home or at hospitals.
In 1974, Hasegawa released “Hasegawa’s Dementia Scale,” a test of cognitive function, based on his belief that such a diagnostic standard was needed.
He was well aware of the difficulties and prejudice faced by people with dementia and their families. In an effort to help them, Hasegawa provided day-care services at St. Marianna University Hospital as an extension of his treatment for outpatients.
While serving on a governmental panel in 2004, he worked hard to change the Japanese word for dementia from “chiho,” which sounds insulting because it can also mean stupid, to the present-day term of “ninchisho,” which means cognitive disorder.
He also contributed to spreading the concept of “person-centered care,” the idea of focusing on the person, rather than their dementia.
Hasegawa announced that he had dementia when he was 88, specifically that he had argyrophilic grain dementia. Recently, more and more people are likewise revealing that they have dementia.
Kumiko Nagata, deputy director of the Tokyo Dementia Care Research And Training Center, said Hasegawa’s announcement was significant for two reasons: He openly showed that even medical specialists cannot avoid dementia and that anyone may develop it at some point, and he made it clear that there are unknown aspects of the condition that even specialists cannot recognize until they personally experience it.
“That’s why it’s meaningful for people who have dementia to talk about their experiences,” Nagata said. “He conveyed to us the importance of thinking about it together and building an inclusive society.”
Hasegawa said one of the things he had learned after having dementia himself was the idea of continuity.
“Even though we have dementia, we don’t suddenly become a different person,” he said. “The world where I live continues without a break before and after having dementia.”
Hasegawa also said that having dementia is not a fixed situation. “I never realized there were so many gradations of getting better and getting worse. I don’t want people to think that once they have dementia, it’s over for them,” he said. “I don’t want the people around those who have dementia to abandon them as a person who is no longer capable of understanding anything anymore.”
As to why he announced his dementia, Hasegawa said, “I did it so that I can live and die better.”
More and more local governments, including Gobo in Wakayama Prefecture and Setagaya Ward in Tokyo, have created ordinances in recent years that are aimed at respecting the dignity and wishes of people with dementia.
Nagata said: “In his last few years, Dr. Hasegawa traveled around the country to convince local people that the most important thing is to build communities. The seeds he planted are steadily sprouting in many places.”
Time to review medical care
An estimate by a governmental research group shows that currently, about 6 million elderly people in Japan have dementia, and the number is expected to increase to about 7 million, or one in five of those aged 65 or older, by 2025. Some estimate that the social cost incurred by dementia and its medical treatment and nursing care will exceed ¥21 trillion by 2030.
Regarding medication for Alzheimer’s disease, which is the most common type of dementia, there are high hopes that the drug Aducanumab may be approved this year or early next year in Japan. Aducanumab may lead to a fundamental cure, unlike currently available drugs that provide symptomatic treatment.
It would be epoch-making if this drug eliminates the substances causing dementia and effectively inhibits the progression of the disease, but it will not be given to people who are already at an advanced stage of the disease.
The number of people with dementia is rapidly increasing due to the graying of society and increased longevity. “It’s time to review the medical treatment of very elderly people, such as those in their 80s and 90s,” said Masahiko Saito, honorary director of Tokyo Metropolitan Matsuzawa Hospital.
Decisions should be based on each person’s condition. However, unlike early-onset dementia that affects people in their 50s and 60s, for very elderly people, dementia involves declines in cognitive function that are not far outside the normal range of aging symptoms.
From this viewpoint, Saito says he has doubts about the way very elderly patients are currently treated, such as prescribing a great deal of medication.
“I’m not saying medical care is unnecessary. I just mean it’s more important to support people’s daily lives and build communities where they can live without anxiety,” Saito said.
Hasegawa used to say, “I think it’s important to accept dementia caused by age as it is and live your own life as you are.”
With even longer life expectancy predicted in the future, there are many things for us to consider with Hasegawa’s wisdom as a guide.
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