Japanese elders’ perceptions of the impact of Home and Community based Long Term Care services on quality of life and independence

Background

Japan is currently the “oldest” nation in the world with the highest proportion of the population over the age of 65. Japan has the world’s highest life expectancy at birth, estimated in 2005 to be 78.7 years for males and 85.5 years for females. Disability tends to increase with age, causing a need for assistance in many areas of life. Due to increased longevity, low birth rates, changing family structure, and changing cultural norms associated with caring for older adults, the Japanese government initiated long term care insurance (LTC) in 2000. This approach involved the development of public policy initiatives to allow care of the aged to be borne partly by society as a whole, rather than falling solely on individuals. In 2000, Japan developed universal long term care insurance (LTC) designed to provide resources for older adults and their families to assist older adults in remaining independent in their communities, avoiding institutionalisation, and maintaining quality of life. In this article, we will describe the factors affecting aging in Japan first, and then examine the results from a qualitative study conducted in Japan with 43 individuals who were over 65 years of age.

Longevity

Population aging is happening worldwide but Japan has the highest proportion of its population over the age of 65. This growth in the number of people over 65 is unprecedented in Japan. Over the past 50 years, the percentage of the elderly population has increased fourfold from 5.7% in 1960 to 23.1% in 2010. Improvements in health care, disease prevention, and nutrition have contributed to the increased life expectancy of older Japanese adults. Additionally, a declining birth rate has contributed to the overall percentage of older people in the population.

Cultural Factors

Cultural factors affecting the care of older adults in Japan are based in traditional Japanese attitudes toward elders as well as currently changing cultural norms. Before World War II (WWII), Japanese people lived in extremely rigid family systems characterized by a male head of household who inherited family assets, a mandated official family registry, and multigenerational households. The oldest male was the head of the household and his wife was expected to provide care for older family members, specifically the husband’s parents. The official policy regarding family registries was abolished after WWII but continues to effect Japanese society today (Hashizume, 2000). The percentage of family caregivers living with impaired elderly family members is still high in Japan, at 43%, but that leaves over 50% of the elderly population without care from a relative in the home. Although the numbers of family caregivers are decreasing, “84% of all family caregivers in Japan are women and 29% of them are their elderly family member’s daughter-in-law.”

Another important cultural factor related to caring for older adults is sekentei. Sekentei is a social construct that causes a person to worry whether their behaviour does not meet social norms. In terms of providing care for older adults, the sekentei social norm dictates that family members provide care. Accordingly, “some providers believe that ‘sekentei’ social norms of family care giving may be associated with less use of formal services and increased caregiver burden” (Asai & Kameoka, 2005; Asahara & Momose, 1997; Yamamoto & Wallhagen, 1997).

Although Japanese society maintains its traditional norms of care giving with family members providing care for older adults, this situation is changing due to the increasing number of people requiring care along with the decreasing capacity of the family to provide care. Japanese families are becoming “more nuclear” and less multigenerational; thus, fewer family members are available to provide care for older adults. Additionally, more women are working outside the home and have less time to provide care for older adults.

Low Birth Rate

Japan’s current birth rate is between 1.09 and 1.34 births per woman, which is less than the replacement rate of 2.1. The birthrate in Japan has been declining since the mid-1970s and this decline is attributed to a number of factors including fewer marriages, more unemployment, difficulty for working women to return to the workplace after having a child, more marriage-aged adults living with their parents, and few out-of-wedlock births.

Overall, fewer people in Japan are marrying. Women are waiting longer before marrying and some women are not marrying at all. As their earnings rise, women are increasingly reluctant to give up their jobs for childrearing. The National Institute of Population and Social Security Research (NIPSSR) reports that six out of 10 women in their mid- to late-20s are still single up from two out of 10 in 1970 (NIPSSR, 2010). Given that the mid- to late-20s used to be the peak child-bearing age, these trends have impacted the overall birth rate negatively.

Additionally, women experience more unemployment and underemployment after child birth. Many public sector jobs have good benefits and 80% of female civil servants can return to their jobs after having a child. Private companies are not so generous and only one-third of the women who have children return to their jobs in the private sector. Thus many women who have had children have low-paying part-time or irregular work.

Another contributor to the low birth rate is the number of young adults who still live with their parents. It is estimated that half the young people between the ages of 20 and 34 are still living with their parents due to unemployment. Almost half the men between the ages of 30 and 34 were unmarried in 2005, more than three times as many as 30 years ago.1

One further factor affecting the low birth rate in Japan is the cultural expectation that marriage is a prerequisite for having children. Only 2% of births take place out of wedlock in Japan, which is very low compared to other developed nations where the average percentage of out of wedlock births is 30%.2

Long Term Care (LTC) Insurance

LTC insurance was developed by the Japanese government to address the issues of an increasingly older population and changes to the family structure. LTC requires adults over the age of 40 to pay compulsory monthly premiums. Eligibility is based on age (persons aged 65 and older and people ages 40 to 64 with disabilities are eligible) and condition rather than income and assets. LTC committees assess applicants and assign care levels (1 to 6) using an index called the Government-Certified Disability Index (GCDI), which then determines what array of services will be available. Applicants are referred to care managers who develop care plans with the patients’ physicians. Municipal governments are the insurers. Services are categorised under home care services, facility services, community-oriented services, and other. Table 1 displays the services offered under each category.

The Present Study

Numerous studies have examined the impact of the current LTC on family caregivers, utilisation of LTC services by elders, and costs of care. Other studies have examined Japanese elders’ views about aging but little is found in the English language literature concerning Japanese elders’ perspectives about access to, quality of, and affordability of home- and community-based services through LTC. The purpose of this study was to explore the perceptions of older Japanese adults who are using home- and community-based LTC services to find out how they feel about the services they are receiving under LTC and whether they would like to see changes in the LTC system.

Methods

For this qualitative, exploratory study, our objective was to explore the perceptions of older Japanese adults (65+) regarding their experiences with LTC. Through our collaborative research effort with faculty members at Japan Women’s University (JWU), we were able to identify individuals who were willing to be interviewed about their perceptions about the health and mental health care they receive in Japan. We obtained Institutional Review Board (IRB) approval from the University of Utah, and had a support letter from Japan Women’s University enabling us to work together to conduct this research.

Over the course of the first two years of this three-year project, we interviewed 43 patients from Japanese adult day care facilities in semi-urban and urban areas of Japan. The participants needed to be at least 65 years of age to be included in the interviews and to be free from moderate to severe cognitive impairment as measured with the Montreal Cognitive Assessment (MOCA).

JWU faculty members assisted us in identifying adult day care facilities that would be receptive to our study. Once we obtained permission from the day care center to conduct interviews, we spoke with adults and asked if they would be willing to be interviewed. We used purposive and convenience sampling techniques. Using a Japanese language consent form, we obtained consent in Japanese from all participants. Interviews were conducted in Japanese, audio-recorded with participant permission, and translated into English by a professional translator who was a native Japanese speaker. In addition, during year two of the project one of the students who was a research assistant on this project was fluent in Japanese, and she was able to provide translation while the interviews were conducted. Interviews lasted on average about 30 minutes. Once the interviews were translated into English, we utilised the Nvivo 9 software program for managing the data. We used open and selective coding to uncover themes from our interviews. Research assistants who were enrolled in the Aging Emphasis for the Masters of Social Work Program at the University of Utah worked closely with the lead author to code these data.

Results

Demographics

Demographics for the 43 participants who were interviewed are displayed in Table 2.

Overarching Themes from Interviews

The Japanese elders interviewed for the study had a broad range of experiences with LTC and home- and community-based services. Areas of discussion included transportation to and from medical appointments, living arrangements, wait time at physicians’ offices, contribution of health care to independence and quality of life, affordability of health care services, assistance to and from medical appointments, use of LTC insurance, knowledge of services available, positive aspects of health care services, and the need for (or lack of need for) changes to the current LTC system. The codes after each quotes provided with the themes indicates assigned number of participant, participant’s sex, and participant’s age.

Transportation

The Japanese elders identified a variety of modes of transportation they used to go to medical appointments. Taxis, bicycles, walking, cars, and shuttles were common methods of transportation used to access health care services. As one participant noted,

I usually ride my bicycle there. Fortunately, I can still ride bicycle. I want to keep doing it as long as I can. I also plant vegetables at my garden and sometimes bring them to a store where they sell fresh vegetables. This is a highlight of my life. 24F85

Other participants stated the following about their transportation to appointments:

I go to Koga hospital every other month. Before, I got my leg hurt and it was swollen. And I was hospitalised for a month. I used to ride a motorcycle there but they started a bus service in August. I ride their bus to get there since August. 27F87

I walk there with my walker… With my walker, about five minutes… Yes, it is very close. I can even see the clinic building from my house. 40F94

Koga hospital has a bus and the bus comes to pick me up. I like it very much. It is the best way to get to the clinic. If I ask my children to take me to the clinic, I have to buy them a lunch but I do not have to if I use their transportation service. (Giggling) 23F87

I have friends who go to the same clinic… Yes, we make same day appointments and go there together… We take taxi to get there. We usually spend all day there since we have four of us. 34F86

Living arrangements

The majority of Japanese elders (33 or 77%) lived in the community, either alone or with family members. The remaining 10 (23%) lived in assisted living communities. As these participants discussed,

I have two children. One is married. And both children lived close to me; in the separate houses in the same complex before. However, they moved out, they moved far away last September. I have been living alone since then. 24F85

Since I live with my family, I do not clean house much, except for my room… Yes, I also live with daughter-in-law and grandchild. 27F87

I live in Suga, in Gyoda city in Saitama prefecture… I live alone. 36F89

I live with my son and his wife. 35F85

Wait time at physicians’ offices

There was no consensus regarding wait times to see physicians. Respondents indicated that wait times varied, some wait times were quite short while other were longer. Some respondents indicated that the wait times seemed to be dependent on whether the elder had an appointment or was a walk-in. Others said they usually wait a long time, while others noted they did not wait long. These participants explored a variety of issues as illustrated in the quotes below:

It’s not too bad if I have an appointment. I have to wait long if it is walk in. When I have an appointment, I wait about 10 minutes. When I went to the hospital for the first time without an appointment, I needed to wait for a long time. 28M88

Yes. It’s long. It usually takes from 30 to 50 minutes. 23F87

If I go there first in the morning, the doctor sees me immediately. During the day, I need to wait longer to see a doctor. 29F88

Yes, it is long. I usually have to wait for two to three hours. Even if I have an appointment, it is not likely that I get to see a doctor immediately. 31F81

Well, my daughter-in-law goes there earlier and picks a numbered card for me - the card indicating the order to be served. Without it, it takes about two hours…With a card, no wait. I get to see the doctor right away… They tell you the order you are seen by doctor. If you don’t have a numbered card, you will wait for a couple of hours. 40F94

The hospital the waiting time is very, very long so it’s not good. 75M85

Depending on the day, it usually takes 15 to 45 minutes. 32F83

Contribution of health care to independence and quality of life

Only two respondents said that their health care services did not help them remain independent. The majority of the participants (41 or 95%) indicated that health care services helped them remain independent and added to their overall quality of life. They mentioned:

I do not know whether day service helps me remain independent but I enjoy coming here. 45F96

It does seem to help me stay independent. If I didn’t come here, I would just stay at home and do nothing but sleep or stay in bed all day. But since I come here, I still have to get up and get ready. 56M69

It’s been very helpful. I live in a  danchi3, and in my apartment the bath tub is very tall. When I’m at home it’s difficult, but when I come here I can take a bath. 69F00

Since I’m injured and can’t move as well, I used to just lay there, stare at the ceiling and listen to the radio, and feel the changing of the seasons. Then someone from the Hana House recommended to me if I would like to go to the day services. So I thought I would try it out. So I came and tried to do the afternoon activities and crafts. My body was feeling odd after doing a craft for 20 minutes and the female teacher that was doing it told me that I don’t have do the whole thing, and I continued with that for a year. After the second year I was able to do this and that. Because of this place I’ve become a lot healthier. 74F00

When I come to the day services I get to talk with everyone. 54F89

Affordability of LTC services

All of the respondents felt that the LTC was affordable. Many mentioned the co-payments of 10% and the low cost of medication, hospitalisation and clinic fees:

I am classified as first degree disability. Any medical related service fees including clinic fee, hospitalisation, medications are reimbursed by the city. 29F88

Well without the medical insurance system these services would be very expensive. The elderly homes that are here are very expensive. For me, for one month’s worth of medicine I only pay 3,000 to 4,000 yen, and even if I come here for a month, it’ll only cost about 10,000 yen. Also the government pays about half of that for me, if that wasn’t the case I wouldn’t be able to visit here often it would be too expensive… 69F00

Yes, it is reasonable since government pays most of it. We only pay 10% of the fee. 28F88

Assistance to medical appointments

Approximately half (55% or 24) of the Japanese respondents indicated that they received help to access medical services. Most of the assistance to appointments was provided by family members. The respondents noted:

My children take me to the hospital. 23F87

I have been visiting a doctor every three month since my hip replacement surgery. My son drives me there. 28F88

My niece, my older brother’s daughter, takes me there… She drives me. She comes to pick me up at my place and takes me to Hanyū hospital. 43M75

Use of long term care insurance

Since the inception of LTC, 31.1% of the population 65 and over is using home health services. Seventy percent (30) of the Japanese respondents in this sample used LTC. As discussed below, they used a variety of home- and community-based services covered by LTC including adult day services, cleaning, home meal service, nursing and doctor visits, and transportation services:

She has been using day service that is covered by long term care insurance… for five years and five months… I come here on Tuesdays and Saturdays… their bus comes to pick me up and drop me off at my home… 23F87

I currently come here twice a week. Yes, it is reasonable since the government pays most of it. We only pay 10% of the fee. 28F88

Yes. My doctor comes to see me at home. Twice a month... places a stethoscope on my chest, gives me a shot. He leaves the room as soon as they are done. And then, nurse comes in to check my blood pressure. 35F85

I also get rehabilitation services here at this facility. I come here once a week. 31F81

But the central ward, since I’m paralysed on the left side, they pay part of the taxi fee. They give me about 50,000 yen a year in taxi fees starting in April. And they are good until March of next year, but I’ve already used up almost all of it. 52F75

Knowledge of services available

All recipients of LTC are assigned a care manager who works with their physicians to provide treatment based on an assessment completed each year. Respondents indicated that their care managers assisted them in knowing what services were available, family members informed them about services, and physicians helped them with referrals. The quotes below illustrate these points:

Do social workers help you understand the services?... Yes. If you consult them, they will let you know. For example, they refer you to in-home services or other services you need after being discharged from hospital. 27F87

Before coming here, I went to see different doctors for different problems. After I came here, I only see my current doctor, Dr. Furui. I consult him on any health issues that I have and he refers me to different doctors and different services as needed. 34F86

All services are covered by insurance so we don’t really “look” for services. Always make a phone call to the hospital where I usually go and ask if they can treat me for this problem. 1M82

Yes, I ask them (care manager) about it. We talk about my health issues and then they suggest that we contact the social worker or the health insurance office and get examined there and then they assign a level of care… although there are times when I have questions about the services. 71M00

Positive aspects of healthcare

Most respondents were very positive about the health care services they received under LTC. According to the participants, the services are affordable and meet their needs:

I am classified as first degree disability. Any medical related service fees including clinic fee, hospitalisation, medications are reimbursed by the city. I am very satisfied with the services that I am receiving. 29F88

Well… I do not have anything particularly. I take it for granted. Yes. Thanks to health care insurance, I am able to pay fees for this facility. I even get some extra money from the insurance. 33M83

Nothing specific; we don’t think too much about it; it’s just the system; most only pay 10% of the cost of care which is good; others that make more pay 30% so 10% is good; most don’t think too much about the system; feels safe, comfortable and secure with the care she gets. 2F00

First and foremost, I feel a sense of safety, I feel safe when I see my doctor; trust that I have for the doctor; this hospital is run by his family (the doctor’s family). Totally trust my doctor; if he thinks there is something wrong, he will refer my case to a general hospital so I trust him very much. 182M

I’m very grateful and don’t really have an opinion of my own, but the doctor treats me very well. A long time ago we didn’t have this kind of system in place, during my mother’s time. And since we do have this system now, I don’t have to rely so much on my children but can be independent on my own. So I’ll continue to do as much on my own as I can while here at this facility, but when my abilities leave me I can then think about the different services available and maybe get into an old folks home. 67F00

Need for change to health care system

Most (86% or 37) respondents indicated there were no changes they would like in the LTC system; however, six (14%) indicated that there were some changes they would like to see. These changes were:

I have a lot of wishes about my doctor visits… But I am hesitating to tell you… I wish my doctor could home-visit me. 41F88

It’s changing all the time, constantly becoming more rigid… for normal people. It might be good for people with more severe [medical problems]. They probably have some special consideration, so it’s good. So for people like me, of lower [medical] status it’s not so good. But there’s nothing to be done since I’m still healthy. 51F82

The nursing staff… to say it bluntly, the people that work here change so often. When I ask about it they mention the working condition or labour hours involved. It would be nice if the government could think more about their working position. 69F00

Nothing’s really coming to mind, but I’m not very good at going to the doctor’s. But when I think about what I’d like changed, nothing comes to mind. But in Japan we have this health system even though I don’t fully understand it, so since I was young it’s been very reassuring. It’s a great thing I think. I’m thankful for it… But coming here to the Hana House is the best thing so far. So I don’t really have anything I’d like to see changed. I’m very satisfied with the services. 74F00

Not like I like or dislike, it’s just there that the care is available. I like only paying 10% of the payments… Everyone takes good care of me; nothing to improve. 5F00

Discussion

Overall, Japanese elders are very satisfied with the LTC system. They find LTC health services to be affordable, accessible, and of high quality. Of particular interest is the finding that most of this sample of Japanese elders believe that LTC adds to their ability to remain independent in their communities and improves their quality of life. These findings support the government’s goal of LTC - to improve the quality of life of older Japanese people, avoid institutionalisation, and assist Japanese elders to remain independent in their homes and communities (Nishi et al., 2010; Tamiya, 2010).

Approximately half of the Japanese elders in this sample relied on their family members to assist them in getting to appointments, and hospital and clinic visits. Additionally, the majority of the sample lived with family members. Although the focus of this study was not on care giving issues it is apparent that these are prominent in Japanese society. As in other developed countries, shrinking family size and the increase of women in the workforce has strained traditional care giving systems.

Also of particular interest is Japanese elders’ concern about the turnover of nurses and aides in adult day service settings and clinics. When asked what they would change about the LTC system, this problem was mentioned by several of the respondents. They believed that the government needed to raise the pay of nurses and nurse assistants to decrease the turnover of staff. Studies of LTC in Japan have noted problems with low pay in elder care jobs and a shortage of care workers. Additionally, since the implementation of LTC and the privatisation of care, more care workers are hired as part-time workers or as-needed workers rather than full-time (Broadbent, 2010; Hotta, 2007; Saito, 2012). The pay scale for home care workers is set by the LTC system Remuneration Scale and does not include travel time or higher wages for more experienced helpers. According to Broadbent (2010),

[a]s one home helper commented, working in a supermarket is better [than home help work] because even though it’s the same low pay and poor conditions you are guaranteed regular hours and shifts.

Another category of home care worker is the registered helper (tōroku herupā). Registered helpers are hired by agencies to perform as needed home care. They receive very low wages and have few benefits—yet they are growing as a proportion of care workers because agencies are cutting costs (Webb, 2003). It is estimated that these helpers make up 70% of the home care workforce. These labour issues create problems in developing and sustaining quality LTC services.

Opponents of universal health care systems cite long wait times to see doctors as a drawback. In this study, long wait times to see doctors were a concern for some of the respondents. They noted wait times of up to two hours although it was not clear what the circumstances were surrounding these long waits. Further research is needed around this issue.

In Japan, a patient does not have to have an appointment to see the physician—a patient arrives at a clinic, takes a number, and waits to see a provider. Depending on the size of the clinic and the time a patient arrives, the waiting time can be 15 minutes to hours. Some hospitals and clinics are developing regularly scheduled appointments to help eliminate long wait times, although they must still accommodate walk-in patients. Additionally, there are shortages of physicians in Japan (about two physicians to every 1000 people) (Suzuki et al., 2007) and Japanese people visit their physicians on average 14 times per year, more than any other developed country (Suzuki et al., 2007). The combination of these factors adds to long waiting times to see physicians.

A criticism of Japanese physicians is their paternalistic attitude towards patients (Sekimoto et al., 2004). Traditional patterns of communication involve physicians’ withholding information from patients, informing families regarding patient conditions before informing the patients, and treating patients as if they can’t understand treatment options (Sekimoto et al., 2004). In this study, Japanese elders talked about how much they trusted their physicians and the treatment they received from their providers. Several mentioned how thoroughly the doctor communicated their condition and helped them understand it. This theme could be a reflection of the Japanese elders’ reluctance to make negative statements about their physicians—it is seen as rude to do so. For the most part, the elders in this study were very trusting of their physicians and did not mention paternalistic attitudes.

Conclusion

The Japanese elders in this study were satisfied with their LTC insurance and believed it helped them maintain independence and quality of life—two of the goals of the program from the Japanese governmental perspective. Thus, this group of elders reflected the success of the program in meetings its goals.

Overall, it appears that this group of elders pinpointed problems that others have also identified in the LTC system. They believed the wait times were too long to see doctors and did not like the high turnover rate of care staff.

It is the hope of the authors that the program will continue without excessive cuts due to budget pressures and that older adults in Japan will continue to receive the services they need to remain independent in the community and maintain their quality of life for as long as possible.

Acknowledgements

The authors would like to acknowledge the following agencies for their assistance in the study: Seikien, Hanyū, Saitama; Naruse Care Center, Tokyo; Life Commune, Yurigaoka, Kawasaki; Keifu Home, Yokohama; Aobadai Community Care Plaza, Yokohama; Sunny Terrace, Yokohama; Raize Seikien, Kazo, Saitama; City of Hope, Hanyū, Saitama; My Home Harumi, Tokyo; Minosawa Community Care Plaza, Yokohama; Mamedo Community Care Plaza, Yokohama; Satsukigaoka Community Care Plaza, Yokohama; Hana House, Kawasaki. The authors would also like to acknowledge the Asian Center at the University of Utah for their support of this study, translators who assisted in the study and students who participated in the research.

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Notes

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