Originally set up in 1980, what has the Alzheimer’s Association Japan (AAJ) actually been doing since then? What are its views? And what does it want now? Let us explore those questions as we take a look at the future of social security.

Changing the world of dementia

The history of AAJ also tells the story of changing the world of dementia.

The beginnings of AAJ in Kyoto

Towards the end of the 1970s, a group led by Dr. Hayakawa Kazuteru at Horikawa Hospital in Kyoto began to hold get-togethers for the families caring for persons with dementia (PWD). In November 1979, AAJ President Takami Kunio shared his impressions of taking part in those get-togethers for the first time.

“There were around 12 families in attendance. One after another, they spoke about the condition of the senile people in their lives, the dedication of family members looking after them, and the hardships they faced. Some people cried as they spoke, others said things like ‘I wish they’d hurry up and die…’

These were things that families could only say to one another. I honestly felt that the world I had known up until that point had suddenly changed. I thought I was the only one dealing with these hardships, but that wasn’t the case. More than that, there were people who were coping with relatives who were in a far worse condition than my mother.

I had assumed that, if I talked to other people about it, they simply wouldn’t understand. Talking to other families however, they really did understand. Even when there were things I forgot to say, someone else would invariably say what I was thinking. Talking to other people almost felt like I was talking to myself in the mirror. People were nodding as I spoke, and their stories brought tears to my eyes as they echoed my own situation. That sense of reassurance felt like a moment of tranquility in the living hell day-to-day life.” (The Senile and their Families, Takami Kunio, Pub. Futaba 1994)

Taking the hardship of caring for the senile as a starting point

In 1980, these get-togethers led to the creation of AAJ. The association’s starting point was the hardship of caring for senile relatives. They named it the “Association for Families with Elderly Senile Relatives.” After numerous controversies, we no longer use words like “senile” in this context. At the time however, the families didn’t yet have a full understanding of dementia, and so chose a name that reflected their situation, as families that felt burdened by the hardship of having “senile” elderly relatives.

Although there was no real intention of turning it into a nationwide organization initially, people started to call for the formation of branches all over Japan, following in the footsteps of Kyoto. It inevitably developed into a nationwide organization as a result. Despite the fact that nothing of this kind had ever emerged before, it was clear that people had been crying out for a nationwide association all along.

Acquiring a new perspective on dementia

AAJ may have started out from the point of view of hardship, but it presented families with numerous opportunities to acquire a new perspective on the true nature of dementia, while they continued to deal with that hardship.

Members of the association decided “if there aren’t services out there, let’s create them ourselves.” Their efforts began to bear fruit in 1983, with the launch of Japan’s first privately-run day service in the Gunma prefecture town of Misato (now part of Takasaki city). The care staff consisted entirely of people with no experience of providing care, myself included. We nonetheless came face-to-face with dementia patients who had nothing to do with our families for the first time. We got to see for ourselves people with dementia who completely overturned our existing perceptions.

“I was a teacher and made it to vice principle, but then I started to lose my marbles…” “I couldn’t run the company anymore, so I left it to someone else and became withdrawn…” These were the words of PWD who had really struggled.

PWD have many different faces. They vary depending on who you meet and where you meet them. The day service was able to expand the world for PWD however. Despite being born out of necessity, dementia care actually proved to be a rewarding job too.

In 1987, a privately-run day service called “Inage Howaie” was launched in Chiba. The service was set up and staffed by a group of housewives who had met via AAJ, and who either worked in the care industry or had previous professional experience. In many cases, families caring for PWD appreciated the advantages of using day services, in terms of easing the burden on themselves, but had concerns regarding the quality of care provided by such services. This was one of the reasons why the group had gone to work in the care industry in the first place. They discovered that providing PWD with care from a non-family-member enabled them to calmly assess their condition and turn providing care into something more enjoyable.

Experiences such as these helped families caring for PWD to acquire a new perspective on dementia.

The lament of PWD – “Still alive on the inside”

At the same time, people started to be exposed to comments from PWD in their own words. In 1995, AAJ began to publish heartfelt emotions from PWD themselves in its newsletter.

“There is no melody in my life. No harmony, no resonance.
Inside my head is a cacophony of sounds, all jumbled up.
I want melody. I want the harmony of love.
The resonance of those sounds has left me behind.
Now that I have lost my strength, I’ll probably never stand up again.
Come back! I’m here on the inside, where all my thoughts come from.
Please come back.
Will I never again be able to share all of these beautiful emotions?
All these jumbled up melodies are driving me crazy.
It’s too hard. My head hurts.”
(Living With Dementia, September 1995 issue)

AAJ conducted an interview-based survey in an effort to learn more about what PWD themselves are thinking, as well as their family members. The survey underlined that PWD are “still alive on the inside” and are constantly thinking as they live their lives, highlighting the fact that PWD themselves are the ones facing the hardest struggle.

The shocking move to include dementia under “death with dignity”

Around the same time, something happened that reminded families caring for PWD just how important their family members are and made them reassess what they were thinking.

On August 2, 1994, the front page of the Asahi Shimbun featured an article stating that the Japan Society for Dying with Dignity (JSDD) was considering including dementia as a condition eligible for “death with dignity.” According to the report, JSDD was asking its members for their opinions regarding whether or not to include dementia in the three clauses in living wills, which clearly set out conditions for choosing to die with dignity.

This news came as a huge shock to AAJ. While they weren’t denying that they felt heartfelt sympathy for the hardships faced by families caring for PWD, and that there were moments when they contemplated dying together, the thought making that official seemed appalling. That was something we simply would not consider.

Dementia is not something distinct from mental or physical disability. Would those people who are willing to accept death with dignity for PWD be willing to consider such requests from people with other disabilities? If so, that would mean standing in opposition to the entire disabled community. If not, then there is surely no basis for putting forward dementia. AAJ decided to protest against JSDD, which ultimately never did add dementia to its statement.

This incident served as a reminder to families caring for PWD that they were still important family members. This had the effect of significantly shifting the association’s direction, towards encouraging PWD and their families to accept dementia and live with it together, rather than simply rejecting the condition. AAJ committed itself to providing a better voice for dementia, in spite of the difficulties involved in caring for PWD.

Towards an era of PWD speaking out for themselves

During the early part of the 2000s, an Australian woman called Christine Bryden^*1 emerged onto the scene, ushering in an entirely new era in terms of perceptions of dementia. Not only did she talk about the distress of living with dementia, but she also made clear assertions about the nature of support for the condition. “Please do not exclude us from decisions that are about us.” She came as a welcome surprise to countless people, myself included.

Ishizaki Noriko^*2, a Japanese nurse who was amongst the first to draw attention to Bryden, then went on to say the following in 2003. “When you start talking about Christine Bryden, you come across people saying things like ‘she hasn’t really got dementia’ or ‘she’s a special case that isn’t applicable to most people’. Personally, I wonder if Christine’s example will become the norm in the near future. I wonder if people with dementia will be able to live their lives positively rather than giving up, and maintain personal relationships as Christine does with her husband. If that happens, maybe Christine will simply become one of the pioneering ones who were the first to live like that.”

From that point onwards, people in Japan began to pay more attention to the voices of PWD too. AAJ were quick to seize on this development and in October 2006 organized a PWD meeting and issued a “PWD meeting appeal” consisting of 17 points put forward by PWD.

In that same year, the association changed its name from the “Association for Families with Senile Relatives,” as it had been up to that point, to Alzheimer’s Association Japan, as it is now. This was also a statement reflecting AAJ’s intention to provide a better voice for PWD and work together as equal partners.

It has now reached the point where a male member of AAJ, who was diagnosed with dementia in his 40s, has set up a help desk for PWD himself while continuing to work, with the help of his employer. That is how far the world of dementia has come. We are arriving at precisely the sort of era that Ishizaki Noriko envisioned.

The story of AAJ over the course of 36 years has been a history of emotional struggles. Those struggles however have changed perceptions of dementia from the point of view of families caring for PWD, and changed the world of dementia too.

Changing the world with dementia

The fact that the world of dementia has changed so much is due in part to the “light” that has come from current trends surrounding dementia. The world of dementia hasn’t just changed in people’s heads. Changes have occurred because the social security system has been improved, which has enabled families caring for PWD and people working with PWD to examine dementia from a calmer, more objective point of view. One of the most symbolic changes came in 2000, with the establishment of the long-term care insurance system.

The establishment of the long-term care insurance system in 2000

As the population continued to age, Japan found itself on the verge of having a super-aging society. Officials and politicians weren’t the only ones who were concerned that gradual improvements in social security wouldn’t be enough to overcome this issue. Many members of the public had realized the same thing, and wanted a new system as a result. The public were nonetheless reluctant to pay more. Maybe they were fed up of being taken in by empty promises from officials and politicians, or being stuck in the same old rut. A sense of mistrust in politics had spread through large parts of the population. While people were uncertain whether it would be better to pay through tax or insurance, what emerged was the long-term care insurance system.

The significance of the long-term care system

(1) The significance of the public’s decision to pay more

The most significant thing about the introduction of the long-term care insurance system was that the Japanese people, who had long been regarded as wanting a new system while being unwilling to pay for it, put aside their mistrust of politics and the debate between tax or insurance, and actually decided to create a better system even if it cost more money. What they wanted was security. This is evidenced by the fact that there was no serious opposition to the system after it was introduced. In fact, most people were pleased to see the long-term care insurance system come into effect.

(2) Establishing a better system in stages

What this also means is that the political administration had actually decided to create a system that would be worth the cost from the start, in the form of “public” long-term care insurance. The idea was that, if they could just confirm that the results would be sufficient to offset the increased cost, they could increase the cost a little bit more and create an even better system. The sense of mistrust between the public and the government was put aside, as the two sides came together to establish a social security system that continued to improve in stages.

(3) A revolutionary departure: Care should be funded by society

Previously, there was an unspoken but prevailing understanding that families should pay for long-term care. Although there was social security in place, it was regarded as being there to supplement family care. The long-term care insurance system however came into being on the back of the proposed “socialization” of long-term care. It was declared that society as a whole should be responsible for long-term care, not individuals. It is fair to say that this was a revolutionary change in terms of the positioning of long-term care.

(4) Choosing to receive actual benefits instead of cash

An inevitable consequence of the socialization of long-term care was that the practice of providing cash benefits, whereby care expenses were handed over in cash and left to the care provider to use as appropriate, was abandoned on the grounds that it was premature. The reasoning was that socialization would struggle to take root if individuals were left to decide how to use care expenses. Instead, a system was adopted whereby actual benefits were provided as needed, in the form of care services.

It that respect, the introduction of the long-term care insurance system was actually one of the greatest accomplishments in the history of care and welfare. AAJ wholeheartedly welcomed the establishment of the long-term care insurance system, on the basis that the socialization of long-term care would help pave the way for the society we were aspiring towards, where people can keep on living their lives with a sense of security, even if they do suffer from dementia.

The difficulties of caring for family members remain unchanged

No matter how much the world of dementia may have changed however, there haven’t been any significant advances from the point of view of caring for family members. Even since the introduction of the long-term care insurance system, there has been a steady stream of reports in the media of tragic incidents surrounding dementia care, involving double suicides for instance, or even murder. Some reports have even suggested that incidents have increased since the system came into effect. This situation remains unchanged to this day, 16 years on from the introduction of the new system.

My mother suffered from both depression and dementia. I was by her side when she passed away in 1999, the year before the system was introduced. Despite the fact that I had around ten years of experience in dementia care, I was completely unable to put that to use while caring for my mother. At the end of the day, she was my mother. I simply couldn’t regard her condition calmly and objectively as a PWD. While I was still trying to provide the loving care she needed, my mother suddenly passed away one morning. The painful emotions remain fresh in my memory to this day.

Looking through fact-finding surveys conducted by AAJ, there has been little real improvement in the psychological burden placed on families caring for PWD since the association was established. According to a survey carried out in 2012, 80% of respondents answered “yes” to the question “Do you ever resent yourself for failing to care for a family member with dementia?”

The fact that there were so many families experiencing the same conflict that I felt more than ten years ago underlined just how difficult yet important it is to provide families caring for PWD with support.

With various different factors intertwining with one another, the socialization of long-term care still needed more time to fully take hold within the world of family care. Further improvements were also needed to the long-term care insurance system too.

The push to drastically reduce benefits and increase costs

The reality however is that we are still a long way off making improvements. Since then, the system has had to be scaled back due to a lack of funding, as a result of increasing user numbers. With the following revisions in the pipeline, we are at a turning point where there is a real danger that the system itself could be discontinued.

• Exclusion of persons at care levels 1 and 2 from benefits for facility and in-home services
• Requirement for persons at care levels 1 and 2 to cover the cost of their own in-home care and home assistance, as a rule
• Requirement for persons at care levels 1 and 2 to cover the cost of own welfare equipment and home improvements, as a rule
• Requirement for users of care services to cover 20% of care fees, as a rule

Essentially, preparations are underway to limit eligibility under the long-term care insurance system to those at care level 3 or higher. This would be a significant breach of the promises made when the system was established. The only “public” aspect would be that insurance premiums are collected from the public. The contents of benefits would depend entirely on the condition of the insured party. This has led to criticism that it is equivalent to “state-sponsored fraud.”

Far from long-term care being “socialized”, families caring for PWD would be forced to take on more responsibilities themselves.

If we want to stop the long-term care insurance system becoming an empty shell, we need to do everything within our power to block these negative changes that are currently being pushed through.

On August 31, 2016, AAJ submitted a formal ”request to allow persons with dementia and their families to live secure lives” to Minister of Health, Labor and Welfare Shiozaki Yasuhisa, calling for the proposal to reduce benefits and increase the cost burden to be withdrawn. We are racking our brains to come up with a way to make this request a reality.

Bringing about a shift in thinking towards putting social security first

The proposal to reduce benefits and increase the cost burden has come about because the number of users has exceeded projections at the time the system was established, while at the same time there is more pressure on finances than anticipated. We may have no choice but to accept that these are tough times from a financial point of view. After all, the national debt is said to be over ¥1,000 trillion.

Nonetheless, the notion that the only option is to abandon benefits because there isn’t enough money available is verging on negligent. This can only be down to a lack of policy leadership. If the government is lacking in policy leadership, we need them to take a step back. The only solution is to take a step back, adopt an entirely different way of thinking, and refine policy based on a new concept.

The current policy of cutting social security due to lack of finances is underpinned by an economy-first philosophy, based on achieving economic growth and then channeling earnings back into social security. This concept is being put into practice as part of “Abenomics”. Despite the fact that the economy is picking up at present however, there has been no real increase in consumer spending. In the resulting chaos, it is clear that Abenomics is already starting to crumble.

In order to block negative changes to the system and restore some hope to the long-term care insurance system, what we need right now is to bring about a shift in thinking, towards putting social security first rather than putting the economy first. There is no shortage of people advocating that way of thinking.

“Welfare is the form of savings with the highest yield. It is an investment in the future that will bring the highest possible return. The dichotomy between welfare and growth no longer applies. It is clear that growth hasn’t necessarily translated into improved welfare over the past decade. If anything, we are now living in an era in which welfare is driving growth. At the very least, we need to extricate ourselves from the shameful position of being the OECD country with the lowest standard of welfare.” (Inaugural speech by the Mayor of Seoul, Park Won-soon, in 2011).

With a couple of minor alternations, you could apply this almost directly to Japan too.

Starting by restoring confidence in the system

To shift thinking towards putting social security, the first step will have to be to restore waning confidence in the long-term care insurance system. To do that, we would need to start by increasing spending on social security as a percentage of the national budget to similar levels to those in EU countries. That would be funded by increasing the percentage of long-term care insurance costs covered by taxes. That would restore the long-term care insurance system to the level it was at when it was first established. Specific measures to restore confidence would include the following.

• Include services for persons requiring support and persons requiring long-term care under eligibility for long-term care insurance benefits on an integrated basis
• Set the costs covered by users at 10%
• Guarantee that all users will be granted long-term care requirement certification upon request
• Top up and upgrade the status of general projects currently underway in some areas

This is thought to be the only option that will get us back on track to achieving the intended aims of the long-term care insurance system when it was first established.

Security and peace of mind encourage consumer spending

Under the long-term care insurance system, there are members of the public and elderly people who have assets to some extent. As most are anxious about issues such as maintaining a living after retirement however, these assets end up being saved for a rainy day. If the long-term care insurance system were to guarantee a sense of security, people would be willing to contribute some of their savings to public funds, in order to improve the social security system. It is accepted that this would lay the foundations for a different way of thinking. “If the worst comes to the worst, I will be able to benefit from the system. If I don’t need those benefits, they can go to someone else.”

Guaranteeing people security in their lives would give them more room to breathe on a psychological level, which would maintain peace of mind throughout society. If people felt secure in their lives, they would just save what they needed and spend the rest in a more positive fashion. In turn, positive consumer spending would help to ensure economic stability.

Through its efforts to tackle issues surrounding dementia, AAJ is also determined to do its bit to create a society in which everyone can lead secure lives.

…And finally

AAJ will continue to take on new challenges, with the aim of changing the world of dementia, changing how society works, and changing the world as a whole, from the point of view of families caring for PWD.

There is an oppressive air hanging over Japan at the moment, following the mass killing of PWD that took place in Sagamihara. More than anything else, that criminal act made me keenly and acutely aware of the current mood in politics. There are people who think there is no need for anyone who is no longer of use to society, that such people should be put to death rather than being allowed to live out their lives. I’d like to believe that, if we work to create a society in which we treat PWD with respect, we could create a world that is the polar opposite of that mindset.

“I’m sure we can do it, because that’s what we’ve got on our minds right now.” (taken from a line of a fairy tale, Polano Square written by Miyazawa Kenji [1896-1933])

Notes:

1. First Assistant Secretary at the Department of the Prime Minister and Cabinet, Christine Bryden was diagnosed with Alzheimer’s in 1995. She retired in 1996 and was re-diagnosed with frontotemporal dementia in 1998. As her condition has advanced at a relatively slow pace, she has been able to actively share her thoughts as a dementia patient and speak out about how support is provided, and has attracted a great deal of attention as a result.
2. A nurse on the “Koyama no Ouchi” day care service at the Espoir Izumo Clinic in Shimane prefecture, Ishizaki Noriko was one of the first people in Japan to draw attention to Christine Bryden, while providing day care primarily for PWD. She went the extra mile to get Bryden to come to Japan, flying over to Australia to make arrangements in person.

Translated from “Tokushu: Donacchauno? Shakaihosho ― Ninchisho no sekai wo kaem ninchisho de sekai wo kaeru, ‘Kaigo no shakaika’ (Special Feature: What next for social security…? ― Changing the world of dementia. Changing the world with dementia. Restoring confidence in the system as we head towards a ‘long-term care society’),” Journalism, October 2016, pp. 42-48. (Courtesy of Asahi Shimbun) [October 2016]