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I have four grandparents, all over the age of 90. One suffers from dementia and is confined to a bed in the dining area of my mother’s home. Another shows early signs of dementia, on top of a different serious health condition, and we are currently looking for a local health facility to handle her extended care.
My other two grandparents are relatively healthy, but cannot live independently, and require daily support at home. Since we need to take care of the elderly on both sides of the family, my parents have lived separately for more than a decade, balancing their full-time careers with care for and support of their own parents.
I too — eight months pregnant — am part of my family’s social service labor force, working from my parents’ homes, helping out however and whenever I can. My husband assists, as well.
There is a public support system for this aging society, and we have been fully utilizing it. However, there are limits, and this is the reality of what we face as a family.
Japan is the fastest aging country in the world. In 2019, the percentage of people aged 65 and over reached 28.4, an all-time high. Low fertility rates coupled with aging means that by the 2030s, one in three people will be 65 or older; one in five will be older than 75. There are recognized milestones for measuring how much a society is aging. If the population of those aged 65 and over reaches 7%, it is called an “aging society,” at 14%, it becomes an “aged society,” and 21% is a “super-aged society.” It took Japan only 24 years for its aging rate to go from “aging” in 1970 to “aged.” (By comparison, it took the U.S. 73 years to reach the point where it became an “aged society,” in 2014.)
Although Japan is a harbinger of this super-aging society, other Asian countries are following a similar path. South Korea moved from an aging to aged society in 18 years, Singapore did so in 20 years, and China in 25 years — and all are aging still. For these countries in Asia, the response to accelerated aging is an urgent public health issue. Although differences exist among nations, there are some fundamental shared reasons of this rapid aging, including low fertility rates and improved longevity.
Friends and colleagues sometimes ask me why my grandparents haven’t moved to nursing homes, reducing the tasks and burdens on my parents. Needless to say, we appreciate the Japanese healthcare and welfare services. However, in the rural area where we live there are fewer resources and facilities. Our approach is in part the result of the high demand for the available public resources (for instance, there are more than 30 people on the waitlist for a local nursing home).
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Then, too, there are emotional barriers for these four elderly people, whose strong hesitation to utilize outside resources delayed a move. In this, we are hardly alone. According to Japan’s Ministry of Health, Labour and Welfare, nearly 70% of the general public here prefer to spend their last days in their own homes, rather than at hospitals (approximately 19%) and nursing homes (around 1.5%). Of course, we all aim for our grandparents’ longevity. And I am truly grateful that there will soon be four generations living under one roof. However, I also have to admit that it is very challenging, and we often struggle. Already, one of my grandparents has begun expressing that she does not want to live anymore.
For the longest time, the ultimate goal of our public health system has been to make people live longer. Today, Japan has one of the highest lifespans in the world. But are the associated health, social, labor, and fiscal difficulties really what we aimed for? This is the exact reason why I chose public health as my lifework. As a researcher and practitioner in social epidemiology and behavioral sciences, my mission is to create a healthier society by maximizing people’s lives physically, mentally, and spiritually. From both professional and personal standpoints, I cannot stop thinking about how we can achieve these goals — and also, whether they are really appropriate.
The Japanese government has promoted home care for the elderly. There are multiple reasons behind this, including the increase in the number of people who need elderly care, the rising rate of patients requiring further treatment after acute care needs, the general public’s preference for home-based care, and the reduction of hospital beds due to decreasing medical care costs, among others. These home care services help us right now, but huge concerns remain.
Even as we maximize government resources, home care can mostly exist based on family members’ sacrifices — physical, mental, and economic. The reality is that, for people with the most severe service needs, nearly 60% of caregivers spend all day providing support, according to a cabinet office report.
Emotional burden aside, there are clear economic impacts. Without enough workplace flexibility, caregivers increasingly find themselves forced to leave the workforce — as with my mother. In Japan, the number of people who quit their jobs due to caregiving doubled between 2010 to 2017, to 90,000 people. The economic loss of this turnover is estimated to be $60 million per year. While some companies approve of leaves of absence for family care, usually there is a limit. As family members cannot estimate when these care needs will end, there needs to be more flexibility.
Health and care inequalities already exist — between the more affluent cities with extensive medical and social welfare resources and the rural rest of the country. While Japan has far lower levels of income inequality than many other industrialized countries like the United States, Canada, and the U.K., disparities still remain. In areas with scarce resources, the burden of care largely falls on each family’s shoulders. And while there is some financial support from government resources, additional costs need to be paid by caregivers. No doubt the quality of services received varies because of these inequalities.
Despite the promotion of home care, meanwhile, there are scant mental health or counseling resources for the caregivers themselves. In Japan, a care manager is assigned to arrange care and bridge with medical and social welfare facilities for each recipient of government support, but that is the extent of support services. Every day, family members experience a wide variety of difficult emotions — anger, frustration, sadness, loss, guilt, stress, disappointment, and hopelessness. Without professional help, the caregivers can easily become burned out.
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In 2007, the government started to keep statistics on homicide due to care burdens. It is estimated that a caregiver murders an elderly charge once every two weeks. This is a startling statistic in a society like Japan, which is characterized by very low levels of violence. Caregiver suicide has continued in spite of an overall decrease in the number of suicides, accounting for 230 out of approximately 22,000 cases per year.
Compounding the difficulties is that care systems still largely depend on a face-to-face and paper-based registration system. This is frustratingly inefficient. It can take half a day to obtain a single document from a hospital. Scheduling and document-related commitments add up, becoming a very time-consuming process for caregivers. All could be resolved by the use of an IT system.
The government has promoted and expanded regional comprehensive care for an aging society, changing healthcare policies and systems. But as a public health expert who studies such systems, I believe there is much more that Japan, as well as other Asian countries facing these difficulties, can do.
We need to explore how to successfully reduce caregivers’ burdens, as well as help the elderly learn to accept physical and cognitive declines. We should find where these challenges are coming from, and respond to them appropriately based on scientific evidence. For the purposes of collective learning, before and after new policies and programs are implemented, I strongly suggest that we collect data and analyze whether or not they were successful.
The consideration of inequalities in elderly care is likewise necessary. These inequalities run the gamut far beyond economic or location, including communication inequalities (for instance, who is able to process complicated information), social support (if people have friends and family who provide physical and emotional aid), and social capital (such as whether or not a community has a trustworthy neighborhood). It is crucial to know where these inequalities exist and what their effects are on recipients and caregivers. We should minimize these inequalities, and aim for a society where people can end their lives with a guarantee of quality care.
Finally, we must redefine our public health goals. Enabling people to simply live longer is not enough. The World Health Organization defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” It’s time to expand this definition to one that properly incorporates the aging process when there is difficulty achieving this “complete” state. How do we do that? I do not have a complete answer yet. But to figure this out remains one of our region’s most urgent tasks.
Although there have been tough times, I must say that there are surely sweet moments as well — like my grandpa with dementia asking if I have enough money to buy food when I leave for work (as he thinks that I am still a high-school student). I sincerely want to do my best for each of my four grandparents, who have supported me my whole life. At the same time, as a public health expert, I must think about how we can make changes on a societal level before it is too late. This journey, with a soon-to-be-born son, will be continued over generations.