[Special Feature: Dementia and Society] Roundtable Discussion: Thinking About "What is Dementia?" Through Its Relationship with Society

Today, we have gathered everyone under the theme of "Dementia and Society." With the progression of an aging population, dementia is no longer someone else's problem for anyone. First, I would like you to talk about yourself and dementia, and I hope we can think about "what is dementia in the first place?"

First, I would like to ask Ms. Higuchi, who is a person living with dementia.

I was diagnosed with Lewy body dementia when I was 50, and nine years have passed since then. I have many symptoms such as hallucinations, but somehow I am still doing okay. However, I forget various things, so I brought a memo of my thoughts today.

The other day, I walked through a subway station with station designers and Mr. Daisuke Suzuki, a writer with higher brain dysfunction, to point out confusing signs. It started when they contacted me saying they had read my book, "The Malfunctioning Brain," and wanted to hear my opinion.

Even if you don't have dementia, more people are getting lost in stations in a super-aging society, and everyone seems to be in trouble. However, even if you ask elderly people about the problems, they cannot verbalize them well, so the points and explanations from us, who are writers and have brain disorders, are very useful. I feel that the number of situations where society asks for the opinions of those involved has been increasing over the past 10 years.

It is a very good thing that the voices of those involved are heard, but there are also some concerning aspects. "Peer support" (support from peers) for people with dementia is spreading nationwide and attracting attention, but it seems that it is not only about the good aspects.

I see, so you are concerned about the term "person involved." I would like to hear more about that later.

Next, as a "care provider," Mr. Kato.

I have been running my own nursing care business in Fujisawa City since I was 25. Before that, I worked at a special nursing home for the elderly, but I felt uncomfortable providing things that I couldn't stand myself to people while calling it "welfare" or "nursing care," so I quit after two and a half years.

It was just at the timing when long-term care insurance was starting, so I started my own business. People say I'm very unusual, but I think I'm doing the work of long-term care insurance by doing the obvious things in an obvious way.

I also think that a dementia society is something like a "sense of speed in getting used to it." In 100 years, Japan's population will be about half, 40% of that will be elderly, and half of those will have dementia. We are moving toward such a society at a tremendous speed, yet I think it's very strange that the majority of people think the current state will continue forever.

Since we have to adapt to the coming of such an era in a very short period of time, doctors, nurses, and caregivers should be having heated discussions. Lately, I've been wondering, "Will everyone be in time?"

Now, from a medical standpoint, Dr. Oishi.

I am a faculty member at the Kitasato University School of Medicine and practice in the Department of Psychiatry at Kitasato University Hospital, but I also operate a Medical Center for Dementia commissioned by Sagamihara City.

My first encounter with psychiatric care for dementia and the elderly was in my second year as a doctor, when the then-Medical Office Officer took me to a specialized hospital for dementia in Saitama Prefecture, saying, "There's a part-time job with good pay." At that hospital, there were physical restraints, and I felt a sense of guilt as I went there every week. Later, when I returned to the university, I was told, "We are going to have an outpatient clinic specializing in forgetfulness, so help out," and since then, I have been working at the university hospital's specialized outpatient clinic and the Medical Center for Dementia.

In the course of my practice, I keep thinking that what medical sciences and medical care can do is just try their best to make a correct diagnosis, and that we really lack the power to handle things after the diagnosis.

When I think about the purpose and goals of delivering care to people with dementia, I think it is not medical treatment, but rather that people with dementia can live in the community with peace of mind.

However, urban planning is not something a doctor does, and while working through various doubts, I came to think that "words" are what influence the perception of the people who make up society. So, while learning from Ms. Higuchi and others, I hope to put my thoughts together in a book.

When considering the point of contact between society and dementia, the diagnostic criteria for dementia include "whether it causes hindrance in social life." If so, if society changes and hindrances no longer occur, it will no longer be diagnosed as dementia. Thinking about it that way, I believe the connection between dementia and society is very deep.

Mr. Ishihara is trying to decipher dementia through "Conflict Resolution Studies."

Among this group, I feel that I have the lowest expertise in dementia, or rather, I am in a position furthest from being qualified to talk about dementia. I am not a person involved, nor have I been a caregiver. I am in a situation where I have only just started my research.

My specialty is Conflict Resolution Studies, an academic field that studies how to resolve disputes and conflicts between people. I think the fact that I, with a specialty in such a field, became interested in dementia is perhaps the interesting or important part of dementia.

Ms. Higuchi wrote the word "man-made disaster" in an essay, and that is exactly it. My interest was originally sparked when I heard stories about "problem behaviors" of people with dementia from people in the caregiving field and home medical care, and I thought this was a problem of conflict resolution. I felt that there was a very raw and natural human state there.

Then, for the first time, I was surprised when I saw the medical definition of "what is dementia." Textbooks say that symptoms of dementia include core symptoms and peripheral symptoms. Peripheral symptoms include wandering, verbal abuse, restlessness, and delusions, which are now often called BPSD (Behavioral and Psychological Symptoms of Dementia), but I thought all of these were "conflict phenomena" rather than "symptoms" of a disease.

For example, they say there is a "symptom" of wandering. But I wondered why walking around should be a problem. The reason why a person's walking is viewed as a problem and called wandering is precisely because there are people who are troubled by them walking that way. When I thought that many of what have been called peripheral symptoms of dementia are conflicts between people—that is, disputes—I thought that if the disputes occurring there could be resolved, the most painful part of dementia might disappear.

From the perspective of us conflict resolvers, dementia is an asymmetric conflict, namely a conflict where there is a difference in the power balance of the parties involved. For example, as mentioned in the book by Mr. Tomofumi Tanno, a person living with dementia, when a family member has dementia and the family becomes depressed due to caregiving fatigue, the decision is made to "let's hospitalize the person with dementia." But even though the family and the person with dementia should be equal, why is the person with dementia the one to be hospitalized? It is not equal. I think it is a typical case of a conflict with an asymmetric power relationship.

Another concept in Peace Studies is the terms structural violence and cultural violence. That violence does not refer to hitting or kicking, but to a state where a person's potential is not being utilized. When some people in a society are placed in a state where their potential is not utilized because of the structure of society or the way people think (culture), it is called structural violence or cultural violence. It can also be said to be a state where the rights and needs of some people are being violated by the structure or mindset of society.

I think the situation surrounding dementia in modern society is also an example of structural violence and cultural violence. Once someone has dementia, they are treated as if "they don't understand anything anymore," and even though they can do many more things, their potential is no longer utilized, or their freedom and right to decide as a human being are easily taken away. In that sense, I believe the problem of dementia is also a challenge for conflict resolution and peace studies.

Mr. Ishihara has presented an important perspective for considering what dementia is.

In a recent essay, Ms. Higuchi wrote that she wants people to rethink dementia before falling into "caregiving difficulties as a man-made disaster," and in her book, she shouts, "What on earth is dementia!?" Looking at it again now, Ms. Higuchi, what is dementia to you?

It's difficult, isn't it? The more I know deeply, the less I understand. Just the other day, I met someone diagnosed with Lewy body dementia, but there were no problems with her thinking ability or memory. However, she has visual hallucinations and various systemic symptoms. She also said that when she was diagnosed, she despaired, thinking, "Dementia!? It's over." Even now, if you look on the internet, outdated information like a life expectancy of 8 years is written. But she found hope after reading my book, and now she seems to be enjoying teaching others about her hobby of dried flowers.

What dementia is is as diverse as "what is a Tokyo resident," and it is different for each person. Yet, a desperate image limited to people requiring Level 5 care or those with caregiving difficulties has permeated. That's why "diagnosis = despair" still exists. However, there are quite a few people whose progression is slow and who continue their work or hobbies.

In something I read recently, a person was diagnosed with dementia and told by a doctor, "In three years, you won't understand anything," but even after three years, there was almost no progression. On the contrary, they said they were worried if they were really okay. I understand that feeling well. When I was diagnosed, the doctor told me desperate things about the progression, but it wasn't like that.

Dementia is something that has a much wider range and various pathologies and progression speeds than most people think, but the fact that an extremely narrow and distorted image has permeated is a serious problem.

Ms. Higuchi, you wrote that you cannot forget the words of a certain visiting dentist. You said that when he heard your story that "people with dementia are ordinary people," he thought, "I see!" but what did he think they were until then?

He probably thought they were people who didn't understand anything, and that it was useless because even if he explained or greeted them, it wouldn't get through. That's why he only talked to the family and started treatment suddenly, which is why he was resisted. But such things are common, and sometimes on social media, I see posts from dentists saying, "Dental treatment for people with dementia is impossible." They say to get dental treatment done as soon as someone seems to have dementia. I see many examples where doctors and professionals are spreading misunderstandings and prejudices.

Ms. Higuchi, before you were diagnosed, did you also have the image that if you got dementia, you wouldn't understand anything anymore?

I didn't think I would be okay. Ten years ago, no matter what I read, it was all desperate information.

If you could speak to yourself before the diagnosis now, what would you say?

Maybe "You don't know what the future holds"? Some of my friends have fast progression, so I can't easily say it's okay. But a friend of mine is still enjoying traveling even now that they require Level 5 care.

Mr. Kato, you mentioned a "sense of speed in getting used to it" earlier. As Dr. Oishi said, if we view dementia as a hindrance or conflict that arises in the "gap" with society, then as human perception and social systems are updated, conflicts may gradually become less likely to occur.

In short, symptoms of dementia are the same as sneezing, a runny nose, coughing, a sore throat, or a stomachache, right? However, symptoms of dementia are all symptoms that cannot be seen by others. If someone is rolling around with a stomachache, people around them will say, "Are you okay?" but because it's invisible, it only looks like behavior resulting from being troubled, and that behavior looks strange to others.

The symptoms they are struggling with are difficult for others to understand. Therefore, it would be good if we could look at those symptoms and understand, "Oh, they are troubled by this."

If I were told to sit in a day service facility for seven hours, it would be absolutely impossible. Why do we think that people who are troubled because they don't understand various things can sit for seven hours when we think it's impossible for ourselves?

I don't know if it's okay to think of it in the same way as a disability, but we assume we are healthy people. That's because we are the overwhelming majority, so we think we are healthy. If everyone were in a wheelchair and I was the only one walking, they might say, "Don't walk, you're in the way." It's only called a disability because it's a minority.

However, dementia will become the majority. Already 41% of 85-year-olds have dementia, 61% of 90-year-olds, and 80% of 95-year-olds have dementia, so by the time you're 90, those without dementia are the minority. Since the average age for women is 87, people living to 90 are common, and it is said that there are over 90,000 people aged 100 or older this year, and there will be 300,000 in 18 years. Since the number of people who will get dementia is overwhelmingly increasing, a society where the relationship between the minority and the majority is reversed is approaching.

In that, I think we are currently in a transition period, but the problem is that this transition period is too short. If this were changing within a very gradual population shift, I wouldn't be making such a fuss. But this is a social problem that cannot be solved by nursing care, welfare, or medical care.

Therefore, it is important that social understanding progresses that "it is natural to get dementia as you get older." In our caregiving field, the staff's children and local children play, but those children don't look at the grandpas and grandmas and think, "Wow, there are a lot of people with dementia." They say the same thing about twice, but they interact with them as grandpas who teach them how to spin a top.

If they weren't tagged with dementia, they would just be grandpas and grandmas. I think it's wrong to desperately say things like "please understand dementia" from behind some kind of wall.

From the perspective of population structure, they will steadily become the majority. In the more than 20 years since you started your business, do you feel that the perception of the neighborhood and society has changed?

That is something that takes time. A child who was 5 becomes 15 or 20, and culture is something that changes, isn't it?

In the first place, families no longer live in three-generation households, so you don't see elderly grandparents struggling. Now the smallest unit, the family, has broken down, and currently, living alone is the most common, and it will exceed 40% in 18 years. If that's the case, you can't understand social diversity within the social unit of the family.

The realization of a community-based, community-symbiotic society means, in short, a place where you can understand what elderly people are like, even if they are not your real family in the community. I think it's an image of creating many places and platforms where relationships can be formed, such as when an elderly person teaches you various things when you come to eat. I think the way those platforms are being created is halfway or not progressing in Japan as a whole.

It's completely a social problem in Japan. As Mr. Tetsuo Tsuji of the University of Tokyo says, I really believe that social security is "internal national defense." I think it's a question of "are professionals really making an effort to shift their thinking?"

When you think about why this grandpa is so angry or why this grandma says she wants to go home every day, you should be able to be convinced just by understanding the mechanism, "Oh, it's because they are troubled by this."

So it's definitely not something that should be talked about with words like "verbal abuse/violence" or "desire to go home."

If you are locked in and told to stay here for seven hours, you will start getting angry and saying you "want to go out." Then they say violence is occurring and ask, "Excuse me, doctor, can you put them to sleep with medicine?" That's not care, it's just abuse. There are still many people who keep saying that such things are the work of care professionals and haven't changed.

I think it will take time. However, I think shortening that time depends on how we approach children. I think it's not about school education, but about what kind of environment adults prepare in their daily experiences.

Dr. Oishi, you also continue to publish columns and other materials about "words related to dementia." It often happens that something that has a reason from the person's perspective becomes a medicalized word as a symptom. Could you tell us how you became aware of the problem with words?

In addition to outpatient care, what I often hear, especially when doing visiting care at facilities, is the term "desire to go home." I wondered what "desire to go home" was, thinking that even I would want to go home early (laughs).

When I look at the records, I see that sometimes people are confined in a facility without sufficient explanation from their family. If you are put in a facility and locked up without any explanation and without your consent, it's natural to want to go home, yet that is talked about with the term "desire to go home." Before long, it's thought of as if it were a psychiatric term.

The term "desire to go home" is nowhere to be found even if you open a psychiatry textbook. I wondered what this was and started paying attention, and I saw that not eating or not taking medicine is described as "refusal of food" or "refusal of medicine," or putting things in the mouth that shouldn't be eaten is called "pica." Or if someone is touching stool with their hands, it's called "coprophilia."

When you turn a phenomenon that is happening into a short word, it becomes easier to medicalize it. I think there is a problem with words, rather than it being something caused by a disease.

The same goes for the terms peripheral symptoms and BPSD. BPSD stands for Behavioral and Psychological Symptoms of Dementia. It was the International Psychogeriatric Association that created the concept of BPSD, and that was in the late 1990s. It was an era when new antipsychotic drugs were being developed and entering the market. I think they wanted to target the treatment of behavioral changes in people with dementia with antipsychotic drugs, conduct clinical trials, and get insurance coverage.

In clinical trials to get insurance coverage, it is necessary to conceptualize symptoms, define them, and create evaluation scales. I think the concept of the term BPSD was necessary as a conceptualization task for that. If we think about the behavior of people with dementia using the term BPSD, that is also exactly "medicalization."

As Mr. Kato said, although there is a reason behind the change in behavior, people stopped thinking about that reason, and the idea that it is a symptom of dementia, a symptom due to a brain disease, spread. I came to think that I had to do something about the term BPSD as well.

The reason I became aware of the problem regarding words was because I felt a sense of discomfort with words conceptualized as psychiatric terms from various experiences in such clinical practice and diagnosis.

I understand well.

If you look at textbooks, they are full of words like anti-social behavior, personality change, verbal abuse and violence, and the coprophilia I mentioned earlier—words that make you wonder what a person with dementia would think if they saw them. In lectures at the School of Medicine, when I ask what kind of changes appear in people with dementia, students think they will be praised by the teacher if they say words written in textbooks like anti-social or assault. I think it's bad that it has permeated in this way.

As Ms. Higuchi mentioned earlier, when you look at information on the internet or in books, those words are overflowing, and as a result, they bring about strong fear and anxiety, and people end up in grief. If that intensifies suffering, then we must review those words.

According to a report from Australia, researchers and various stakeholders related to dementia, such as policymakers, service providers, or companies making tools to help people with dementia, do not try to follow guidelines even though they exist.

The reason is that if you use miserable expressions, people will be more likely to want to buy tools to solve them, and for researchers and politicians, it's easier to collect research funds if they express it in miserable words. The problem of words is not something that can be solved just by creating guidelines. I think every day about how we can increase the sense of speed and change them into words with impressions that are easier for people to imagine.

I would definitely like to ask Mr. Ishihara what he thought about the story just now.

In the end, I think conflict is something that happens when things are trying to change. For example, when a change occurs in the state of the brain and something changes from before, conflict is born within oneself, and conflict is also born between people. But I think that is a struggle or a process until "getting used to it," which is how to adapt to the change.

Conflict resolution is sometimes called "change management," and it can be said to be an academic field that studies how to support change. Conflict arises in response to change, but a new future is born through conflict.

I once thought, "Dementia is a chance to change society." In the 20th century, we made efforts to confine dementia and aging in nursing care facilities and psychiatric hospitals. The treatment there was generally a violation of human rights, or rather, something terrible.

But when the number of people with dementia increases this much in society, people with dementia will gain power in society. I thought this was a chance to change the terrible things that were taken for granted in the world of psychiatric medical care, welfare, and nursing care. I hope to face this conflict and create change by utilizing the knowledge of conflict resolution.

In Conflict Resolution Studies, it is said that the purpose is not to "eliminate conflict" but to "listen to the important thoughts behind the conflict and make use of them." Humans do not have conflicts or disputes over things that are not important to them; they have conflicts over things that are important. Therefore, I think the essence is to listen to and make use of the important thoughts behind the conflicts and disputes from the perspectives of both the person named with dementia and the society and family on the side receiving the person who has developed dementia.

However, in the case of a conflict with an asymmetric power relationship like dementia, the oppressed side (the weaker side) is often in a state where they cannot think that it is okay to convey their thoughts or that it is okay to raise their voice.

In that sense, the fact that various people involved, such as Ms. Higuchi, are starting to say "isn't this strange?" is a chance even as a model for conflict resolution. Only when voices are raised do the oppressors—that is, people without dementia—notice it, and the possibility of dialogue being born arises.

Another thing, when I think about where we are going by facing this human conflict called dementia, what I thought while raising children was that the behavior of babies and small children includes many behaviors in common with the "problem behaviors" of people with severe dementia, such as touching things they shouldn't touch or throwing things, yet why do we say "how cute" when a newborn existence does it, but make it a problem for people with dementia?

We were free beings when we were children, but we acquire social norms as we grow. It might be that through aging and dementia, we are becoming free beings from norms again, but I feel it's a waste that we can only see aging and dementia as "adults who cannot follow social norms."

If we can come to think of the change toward aging as a "blessing," I think our society will become richer, and the process of living, aging, and passing away will become richer.

I would like to return to the "unease" surrounding the term "person concerned" (toujisha) that Ms. Higuchi mentioned at the beginning.

As Ms. Ishihara said, those on the oppressed side have also begun to convey their thoughts. In Japan, people with dementia have started to raise their voices, and the Japan Working Group of Persons with Dementia was formed. However, in the midst of this, Ms. Higuchi, it seems you are feeling various risks.

Ms. Ishihara's story is truly moving. Recently, a wonderful book titled "Synchro and Freedom" (written by Takaaki Murase) was published. It also depicts the positive aspects of dementia, such as freedom and richness. It is a sort of philosophical book that finds richness within suffering, as if finding amusement in a situation even when at a loss for how to respond, and I felt it resonated with Ms. Ishihara's talk.

Thanks in part to the activities of people like Tomofumi Tanno, it has become easier for those concerned to speak out. People with dementia are raising their voices across the country, and supporters have also begun to bring them into the spotlight. However, I heard a story where someone was brought out to speak in public without much explanation, simply because it was a "good thing," and after speaking, they were hurt by neighbors whispering, "Do they have dementia?"

Furthermore, even when those concerned are brought into peer support, they do not necessarily have specialized knowledge. Suddenly being asked to act like a counselor just because they are a "person concerned" does not often go well. While it is good that the spotlight is on them, we may have reached a period where deeper and more careful responses are required.

I have also started to hear negative stories, such as a person concerned asking, "Is there no lecture fee?"

It is perfectly fine for them to ask to be paid. It is a natural right.

I occasionally hear voices saying that people with dementia are selfish, and it makes me think about where they stand and how they should be.

The term "experts by experience" has also been coined recently. Since there are still few people with dementia who raise their voices as experts by experience, I think those who give lectures should feel free to receive money, according to market logic.

I usually live and conduct research in Minamata. The storytellers of Minamata disease also used to speak for free at first, ending with "Thank you for the moving story," but now that has changed to the idea that they should be paid because they are using their time to share their painful stories.

On the other hand, there is also the question of what a "person concerned" with dementia actually is. Most of us will eventually develop dementia. It could be said that the individuals themselves, their families, and supporters are all broadly "people concerned" regarding dementia.

Recently, local activist Riken Komatsu has proposed the term "kyojisha" (co-participants) as a new way of involvement, arising from the dilemma that the more one uses the word "person concerned" to externalize difficulties, the more one creates "non-concerned persons." Ms. Ishihara, you said at the beginning that you were "far from being qualified to talk about dementia."

I feel uneasy myself about having said at the beginning that I am in a "position far from talking about dementia." I said it in the sense that I am currently distant within society, as I am not a person concerned in the sense of being labeled with dementia, nor am I a care worker. However, I think it is very important for that most distant person to talk together.

But actually, I don't really think I'm that distant. I have had the experience of being hurt by seeing the reality of a close person receiving psychiatric treatment, and I intuitively feel that I am the type of person who will develop dementia. Therefore, my personal goal is to seriously create a society where one can live happily even with dementia by the time I receive that label.

Things are changing little by little because Ms. Higuchi and the people here are working hard, but I think it will be tough in society as it is now. Just as a baby is celebrated, how can we create a society where both oneself and those around them can feel that aging is also a blessing? I believe dementia is the symbol of that.

Mr. Kato, Ms. Ishihara spoke again about a society where aging can be seen as a blessing. Hasn't that already been realized in a place like "Aoi Care"? I feel that the blessings woven into daily activities create a sense of comfort. How was that created?

I'm not sure, but I think it's just a matter of whether you think about things in the first person. Since I started my care business at age 25, I was particular about having the group home built by a log house manufacturer. Social welfare corporations and the like don't have the idea of whether one can truly live calmly there as their own home, so they nonchalantly create things like PVC tile floors, plastic tables, and white walls.

They create spaces where they wouldn't want to spend even five minutes and act as if this is the front line of care, but I think it's about asking, "Do you want to be there?" In the first place, I think it's strange to do things like making someone sit in a wheelchair for hours even though they are indoors—things I wouldn't be able to stand if it were me.

I think it's important to think, "I would want to be in a place like this if it were me," and "I would want to be treated like this if it were me."

Thinking about what it would be like if it were oneself is something anyone can do.

For you, Mr. Kato, what kind of presence are people with dementia? Not only those who use care services, but also many people around you, including friends, who *are* also people concerned with dementia.

The fact that Ms. Higuchi and Mr. Tanno say various things is truly a star of hope for us, like a North Star. They are a presence through which we can properly confirm which way to proceed.

However, there was talk of change management earlier; as a state of society, conflict occurs because there is change, and there are parts that involve friction. Conversely, to increase the speed, there are areas where that friction must be made larger. I think that's why I talk about various things outside, and why Ms. Higuchi writes books.

We talk about understanding dementia or the participation of people with dementia, but instead, we must create a society where more money is put in and people commit to it. I think we need to urgently create a system where people with dementia receive proper compensation from the government, go to care sites outside their own residential areas, and conduct external audits. They should write things like "I can't stay in a place like this, please fix it," and if it's not fixed, the facility shouldn't be able to operate.

From our perspective, it's terrifying. But if we have them do that and swing toward a major social transformation, it would be quite interesting. "Interesting" might be the wrong word, but since super-aging societies will come to other Asian and European countries after Japan, it would serve as a great model.

In our activities at the Dementia Future Co-creation Hub, we have also listened to the stories of over 100 people with dementia, including Ms. Higuchi and Mr. Tanno, learning from the knowledge of experts by experience, and we are continuing small attempts to see if we can make this an engine for social transformation. Therefore, I truly feel that the way of life, the narratives, and the wisdom of each individual—who are also our seniors in life—as well as the impact of their messages as people concerned with dementia, are very significant.

However, I also feel that saying "Please speak out more and more because the words of those concerned have an impact" might be slightly off. I feel we might be leaning too heavily on those concerned in the narrow sense.

In a sense, I believe that appointing someone with dementia provides a far more powerful opinion than gathering a hundred professionals. Rather than an expert saying "it should be like this," I think a society where the person themselves says "this is how I am, please fix it" and that is executed is better, and conversely, I think it's okay to have that much friction.

As you mentioned earlier, also as a form of change management. Ms. Higuchi, what do you think?

It is a blessing to be able to work using one's strengths, and I am grateful for compensation that matches that. However, when I first started giving lectures, I was shocked to read slander online saying that I was making money by pretending to have dementia. Since then, I decided never to mention money.

I am originally a person with little interest in money, and I absolutely do not want my activities to be thought of as being for money, so I do not even discuss compensation with those who request lectures.

I understand that very well. I also sometimes get offered amounts for welfare lectures that make me go, "Huh?"

Another thing that left an impression on me recently on the internet was a story about someone who trusted a facility because it was said to value people and left their mother there, only to find she was being given medication because she shouted at night. When they asked them to stop, they were told that because one person looks after dozens of people at night, individual responses are impossible, and if they didn't like it, the only option was to leave.

There are places where one can receive care like at Mr. Kato's facility, but in reality, there are many facilities that quiet people down with medication. My parents are also at an age where they need care, but there is no place like Mr. Kato's facility near my family home. Knowing both the ideal and the reality makes it even more painful. I wonder how the situation will change where facilities for dementia or intellectual disabilities, which are not profitable, remain like institutions and do not become places for living.

I expect that many care service offices are working to create comfortable spaces and pursue high-quality services for their users and residents. However, as you mentioned, some take the approach of having people take medication and may have come to believe that it is unavoidable.

And as you said, while we know of the existence of ideal offices and facilities, they are not in our local areas. Or, the current situation is that we cannot necessarily say it's okay as long as you can reach services at any office.

What do you think about this, Dr. Oishi?

It is a very difficult problem to solve, but first, I think the policy-based allocation of money is fundamentally wrong. I think facilities that can provide things like psychiatric care for people with dementia, such as Medical Centers for Dementia, are very limited, and ideally, if the community becomes richer, such facilities will become unnecessary. I myself hope that what I am doing will eventually disappear.

In other words, I think too much of the money allocation is being poured into such medical structures. As a result, I think money is not flowing toward the services and policies for care workers, the individuals themselves, or their families to obtain a rich and secure life.

I think the external audits involving the people concerned that Mr. Kato mentioned earlier are very important. When we discuss within local governments whether we can somehow resolve the disparity in the quality of services provided by service providers, meaningful audits are not practically being carried out. I think it will be difficult to succeed without introducing external evaluations.

First, investing funds there, and also regarding the Long-Term Care Insurance system, there is a situation where service designs that are not person-centered are prevalent under various constraints for people who develop dementia. I think that is ultimately because money is not attached to it.

In order for those who care for people with dementia to live there with peace of mind and be able to practice the care they idealize, I think we must fundamentally review the allocation of the budget.

Finally, I would like each of you to speak from the perspective of looking toward tomorrow.

Ms. Higuchi, please do share your thoughts on "Let's convey the richness of dementia!"

Until now, SNS was an outlet for venting grievances, and regarding dementia, there were only negative posts about being subjected to violence and so on. However, recently, positive posts have appeared, such as receiving warm words like this from a mother with dementia. I hear such stories nearby, and I think there are actually many of them.

I believe that if the people concerned and those involved share such positive stories more actively, people's awareness will change. Many people think that if you get dementia, your personality will collapse or you will become violent, but that is a defense reaction to stress. If you are in a secure relationship, you will remain a calm and kind person. The core of that person does not change. I want people to know that.

If such recognition spreads, no one will despair just because they have developed dementia, and even if a parent develops it, people won't panic or suddenly change their attitude and worsen the relationship. It is very important for people's awareness to change.

When I met Ms. Higuchi shortly after her book "The Person Between 'Can' and 'Cannot'" was published, she said she didn't want this book placed in the dementia section. Ms. Higuchi has written "Three Proposals for People with Dementia to Regain Their Place in Society": Let's change our words! Let's meet and have a dialogue! And, let's convey the richness of dementia! But from this book, the rich daily life of *a certain individual*, rather than just *someone with* dementia—someone who sometimes lets things be with a "well, it's fine" and exchanges smiles even with dandelions by the roadside—is also conveyed.

As everyone gets older, their cognitive functions decline, but drawing a line with dementia is difficult. Many people think dementia is something special and that they never want to get dementia, but the decline of cognitive function is a part of life.

As anyone gets older, the things they cannot do will increase. If we can think of it as something quite ordinary rather than being ashamed or afraid of it, everyone will feel more at ease. We can also become free from the fear of dementia. I hope for a society where everyone can think, "Even with dementia, they are just an ordinary person."

Previously, when we did a VR experience of visual hallucinations supervised by Ms. Higuchi in a lecture at the Keio School of Medicine, the medical students-to-be were screaming at first, experiencing in the first person seeing someone who shouldn't be there as something very scary. Then, at the end, Ms. Higuchi appeared on the screen and spoke calmly, saying, "It's just about the same as nearsightedness, farsightedness, astigmatism, or visual hallucinations." Just like it's an ordinary thing.

Visual hallucinations are thought of as abnormal and loathsome. As a means to counter that, I emphasize "ordinary." However, in reality, I don't think it's easy.

When I received calls every day from my in-laws saying "Come right now," I also thought, "What should I do!?" So I understand very well that caring for someone with dementia is hard. But I want to keep saying, "They are not abnormal people." I think that if we understand them as ordinary people, both the people with dementia and the future people with dementia who currently view us as abnormal will all be able to be happy.

How about you, Ms. Ishihara?

There are three main things I think about as the form of humanity and society after facing the conflict of dementia.

As my own dream, I would be happy if I could grow old and pass away in a society where growing old and developing dementia are seen as blessings, just as they were when I was born. The kind of thing Ms. Higuchi mentioned, about being healed by the words of someone with dementia, is actually happening, isn't it? I hope we can increasingly notice that kind of richness.

When I told a certain professor, famous for clinical practice and research in dementia, that I was thinking about dementia in terms of conflict resolution, he said, "People with dementia are in conflict with the heavens. But I think they have a high talent for reconciling with the heavens." Everyone conflicts with the heavens, asking why my functions are being taken away, why I must grow old, why my partner is being taken away. But it means they also have a high ability to accept that and reconcile. I think such things also lead to richness.

The other two are slightly more practical issues. We talk about a society where one can develop dementia with peace of mind, but in reality, "with peace of mind" is difficult. I think the reason it's difficult is not just because developing dementia is a major change, but also because it has the aspect of functions being lost and requiring support and care.

Especially if a large part of the population is likely to become that way in the future, I think it will not be sustainable to leave care and support only to professionals in medicine and welfare. I think a fixed relationship between "the person who provides care" and "the person who receives it" will no longer work. In Minamata, we use the phrase "a society where we can trouble each other," and I hope for a richness where we change into a society where we can care for each other as a matter of course, not just as a job for professionals.

Thirdly, in conflict resolution studies, we focus on trauma and being hurt. When I spoke about this to Mr. Tomoyuki Yabuki, an expert on dementia cafes, he said, "Dementia is a problem of trauma." He suggested that the reason we loathe dementia as abnormal or something we don't want to become is because of a sense of fear. Fear of one's own changes, and above all, fear of becoming unable to conform to the norms that society has demanded of "normal adults."

According to Mr. Yabuki, the purpose of the cafe is for people with dementia and people without dementia to interact naturally and realize, "Aren't they just ordinary people?" They are not beings or states to be feared, and one realizes they are ordinary. He says the process of being released from that trauma is important.

I hope that beyond being released from the fear and trauma we have toward aging and dementia, the richness of growing old and developing dementia will emerge.

In a society with a declining birthrate and an aging population, if you ask who the people concerned with dementia are, it's probably not the people with dementia, but us. So the biggest issue is whether we can properly think of it as our own affair. Today, the keyword "ordinary person" came up several times, but to be honest, I don't think there is such a thing as an ordinary person.

The range of what is "ordinary" from here to there is just something everyone has decided arbitrarily, and if that range is wide, it becomes "Doesn't dementia not really matter?" I am more of that type, so I don't interact with Ms. Higuchi thinking of her as a person with dementia.

I think the way the concept of "ordinary" is perceived tends to fall in a bad direction because we have grown up seeing only things close to ourselves in a divided society. Disabilities are separated in elementary school, then we are separated by academic ability in middle school, high school, and university, and then by expertise in the workplace. Because we only see things close to ourselves, we immediately start attacking when we see ideas from something different, don't we?

I also think the dementia problem is the end result of that divided society; in the Edo period, it probably wouldn't have been a problem. I think dementia also has aspects like being gifted, and we receive so many things at the front lines as well.

Finally, Dr. Oishi, could you speak while looking back on the whole discussion?

Listening to Ms. Higuchi, there was talk that from an era of SNS being like a place for mutual venting of grievances, rich words are now gradually being born. Such changes will likely reduce things like the labeling brought about by mutual venting, and I think it's a very important change.

Regarding the trauma in Ms. Ishihara's talk, people with dementia are hurt by being diagnosed, and among elderly people, some have wartime trauma experiences emerge. However, even though it is the influence of trauma, it is sometimes understood as a symptom of dementia, and sleeping pills are prescribed. I thought the idea of trauma-informed care—that is, re-examining occurring phenomena through the lens of trauma—is very important when considering the various changes that occur in people who develop dementia.

As Mr. Kato says, the definition of an ordinary person is difficult, and I don't know if the expression "abnormal" is good, but even ordinary people are in a sense abnormal, and there are various individualities within ordinary people. In other words, I thought it's okay to be different, and that the situation where we recognize each other's differences, where having differences is a matter of course, and where we can respect each other, should spread. It might be a dream, but I thought such a perspective is also very important.

Within the Ministry of Health, Labour and Welfare's Framework for Promotion of Dementia Policies, there are the words "coexistence" and "prevention," but what is important before coexistence and prevention is noticing the inner stigma toward dementia that everyone has, and focusing on the stigma that exists in society. Otherwise, we tend to be deceived by pleasant-sounding words like coexistence, and I think it is more necessary to notice, be aware of, and face the murky stigma within ourselves and within society.

I think things might change a little if the idea spreads that while there is dementia within society, each person is living a rich life.

Thank you very much for your time today despite your busy schedules.