[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 the aging population, dementia is no longer someone else's problem for anyone. First, I would like to have you talk about yourselves and dementia, and then I hope we can think about "what dementia is in the first place."

First, we will start with Ms. Higuchi, who is a person living with dementia.

Nine years have passed since I was diagnosed with Lewy body dementia at the age of 50. I have many symptoms, such as hallucinations, but somehow I am still doing okay. However, since I forget various things, I brought notes of my thoughts with me 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 signage. This came about because they contacted me after reading my book, "The Malfunctioning Brain," wanting to hear my opinion.

Even for those without dementia, the number of people getting lost in stations is increasing in a super-aging society, and everyone seems to be struggling. However, even if you ask elderly people about the problems, they cannot verbalize them well, so the observations and explanations from those of us who are writers and have brain disorders are very helpful. I feel that the number of situations where society seeks opinions from those directly involved has increased over the past 10 years.

While it is a very good thing that the voices of those involved are being heard, there are also aspects that concern me. "Peer support" (support among peers) for people with dementia is spreading nationwide and gaining attention, but it seems it's not all positive.

I see, so you are concerned about the concept of being a "person directly involved." I would like to hear more about that later.

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

I established and have been running my own nursing care business in Fujisawa City since I was 25. Until then, I worked at a special nursing home for the elderly, but I quit after two and a half years because I felt sick providing something I couldn't tolerate myself while calling it "welfare" or "nursing care."

It was just at the timing when long-term care insurance was starting, so I started my own business. People say I'm very eccentric, but I think I'm just 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 of what it is now, 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 find it 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, "Is everyone going to make it in time?"

Now, from a medical perspective, 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 under commission from Sagamihara City.

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

Through my involvement in clinical practice, I have continued to feel that the most medical sciences and healthcare can do is try their best to provide a correct diagnosis, and that we really lack the power regarding what happens after the diagnosis.

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

However, urban planning is not something doctors do, and while working through various uncertainties, I began 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 compile these thoughts into a book.

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

Ms. 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 speak about it. I am not a person directly involved, nor have I provided care. I am in a situation where I have only just started my research.

My specialty is Conflict Resolution Studies, an academic field that looks at how to resolve disputes and conflicts between people. I think the fact that someone with a specialty in that 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 from people in care settings and home medical care about the "problem behaviors" of people with dementia, 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 dementia symptoms consist of core symptoms and peripheral symptoms. Peripheral symptoms—such as wandering, verbal abuse, restlessness, and delusions—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, there is a "symptom" of wandering. But I wondered why walking around should be prohibited. 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 realized 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 asymmetrical conflict—that is, a conflict where there is a difference in the power balance between 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 caregiver fatigue, the solution becomes "let's hospitalize the person with dementia." But even though the family and the person with dementia should be equal, why is it the person with dementia who is hospitalized? It is not equal. I think it is a typical case of a conflict with an asymmetrical power relationship.

One more thing: in the concepts of Peace Studies, there are terms called structural violence and cultural violence. This violence does not refer to hitting or kicking, but to a state where a person's potential is not being utilized. When a situation exists where the potential of some people in a society is not utilized because of the social structure or people's way of thinking (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 believe the situation surrounding dementia in modern society is also an example of structural and cultural violence. Once diagnosed with dementia, people are treated as if they "no longer understand anything," and their potential is no longer utilized even though they can do much more, or their freedom and right to decide as a human being are easily taken away. In that sense, I consider the issue of dementia to be a challenge for conflict resolution and Peace Studies.

Ms. 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 "care difficulties as a man-made disaster," and in her book, she cries out, "What on earth is dementia!?" Ms. Higuchi, looking at it again now, what is dementia to you?

It's difficult. The more I know deeply, the less I understand. Just the other day, I met someone diagnosed with Lewy body dementia, and she had no problems with her thinking ability or memory. However, she had visual hallucinations and various systemic symptoms. She also said that when she was diagnosed, she felt despair, thinking, "Dementia!? It's over." Even now, if you look online, you see outdated information saying things like a life expectancy of eight years. But after reading my book, she found hope and is now enjoying teaching others how to make dried flowers, which is her hobby.

What dementia is is as diverse and different for each individual as "what a Tokyo resident is." Yet, a desperate image limited to people requiring Level 5 care or those with care difficulties has permeated. That's why "diagnosis = despair" still persists. 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. Conversely, they said they were worried about whether they were actually 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 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!" What do you think he thought they were until then?

He probably thought they were people who didn't understand anything, and that it was useless because explaining or greeting them wouldn't get through. That's why he only talked to the family and started treatment suddenly, which led to resistance. But that kind of thing happens a lot, and sometimes on social media, I see posts from dentists saying, "Treating the teeth of someone with dementia is impossible." They say to get dental treatment done as soon as someone starts appearing demented. I see more than a few examples where doctors and professionals are spreading misunderstandings and prejudice.

Ms. Higuchi, before you were diagnosed, did you also have the image that you would no longer understand anything if you got dementia?

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 lightly say it's okay. But a friend of mine is still enjoying traveling even now that they require Level 5 care.

Mr. Kato, earlier you mentioned a "sense of speed in getting used to it." As Dr. Oishi mentioned, if we view dementia as a hindrance or conflict that arises in the "space" between the person and society, then as people's perceptions and social systems are updated, conflicts might gradually become less likely to occur.

In short, dementia symptoms are the same as sneezing, a runny nose, coughing, a sore throat, or a stomachache, right? However, dementia symptoms are all symptoms that are invisible to others. If someone is rolling around because their stomach hurts, people around them will ask, "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. So, if we can look at those symptoms and understand, "Oh, they are struggling with this," that would be enough.

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

I don't know if it's okay to think of it the same way as a disability, but we assume we are able-bodied. We think we are able-bodied because we are the overwhelming majority; 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 the minority.

However, dementia is going to become the majority. Already 41% of 85-year-olds have dementia, 61% of 90-year-olds, and at 95, 80% have dementia, so once you turn 90, those without dementia are the minority. Since the average age for women is 87, people living to 90 are common, and it's 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 get dementia is going to increase overwhelmingly, a society where the relationship between the minority and the majority is reversed is approaching.

Within 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 sciences alone.

Therefore, it is important for social understanding to progress, acknowledging that "people get dementia as they get older." In our care settings, 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 might say the same thing twice, but they interact with them as grandpas who teach them how to spin tops.

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 a wall.

From the perspective of population structure, they are steadily becoming 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 like that, isn't it?

In the first place, families no longer have three generations living together, so people don't see their elderly grandparents struggling. Now the smallest unit, the family, has broken down, and currently, single-person households are the most common, and will exceed 40% in 18 years. In that 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 aren't your real family within the community. I think it's an image of creating many places and platforms where relationships can be formed, such as an elderly person teaching you various things when you come to eat. I think the way these platforms are being created is halfway or not progressing in Japan as a whole.

It's completely a Japanese social problem. As Mr. Tetsuo Tsuji of the University of Tokyo says, I truly believe that social security is "internal national defense." I think it's a matter 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, just understanding the mechanism of "Oh, it's because she's struggling with this" should make it understandable.

So it's certainly 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 get out." Then, people say violence is occurring and ask, "Excuse me, doctor, can we have some medicine to put them to sleep?" That's not care; it's just abuse. Many people have been saying that such things are the job of care workers, and they still haven't changed.

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

Dr. Oishi, you also continue to speak out about "words related to dementia" in columns and other media. 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 issues regarding words?

In addition to outpatient care, something I often hear, especially when doing home visits to facilities, is the term "desire to go home" (kitaku ganbo). I wondered what "desire to go home" was—even I want to go home early (laughs).

When I look at records, I see cases where someone was confined to a facility without sufficient explanation from their family. If you are put in a facility and locked in 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 starts to be 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. When I started paying attention to what these things were, I saw that not eating or not taking medicine was described as "refusal of food" or "refusal of medication," or putting things in one's mouth that shouldn't be eaten was called "pica" (foreign object ingestion). Or, if someone is touching their stool with their hands, it's called "coprophilia" (ro-ben).

When you turn a phenomenon that is occurring into a short word, it becomes easier to pathologize it. I think there is an issue of words, rather than things being caused by a disease.

The same goes for terms like peripheral symptoms and BPSD. BPSD refers to Behavioral and Psychological Symptoms of Dementia. It was the International Psychogeriatric Association that created the concept of BPSD in the late 1990s. That was exactly the 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 obtain insurance coverage.

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

As Mr. Kato said, although there are reasons behind behavioral changes, people stop thinking about those reasons, and the idea that these are symptoms of dementia, symptoms caused by a brain disease, has spread. I began to think that we have to do something about the term BPSD as well.

I became aware of the issues regarding words because I felt a sense of discomfort with words conceptualized as psychiatric terms through various experiences in such clinical practice and diagnosis.

I understand well.

When you look at textbooks, they are full of words like anti-social behavior, personality change, verbal abuse, and violence, as well as the "coprophilia" I mentioned earlier; I wonder what people 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 if they tell the teacher 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 everywhere, and as a result, they bring about strong fear and anxiety, and people end up in grief. If that intensifies suffering, then we must reconsider 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 gather research funds if they express things with miserable words. The issue 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 Ms. Ishihara what she thought about the current discussion.

Ultimately, 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 becomes different than 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 also called "change management," and it can be said to be an academic field of 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 things like dementia and aging in nursing 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 gain power in society. I thought this was a chance for the terrible things that were taken for granted in the worlds of psychiatric medicine, welfare, and nursing care to change. I hope to face this conflict and create change by utilizing the knowledge of conflict resolution.

In Conflict Resolution Studies, we say that the purpose is not to "eliminate conflict" but to "hear the important thoughts behind the conflict and utilize 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 hear and utilize the important thoughts behind the conflicts and disputes from the perspectives of both the person labeled 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 asymmetrical power relationship like dementia, the oppressed side (the weaker side) is often in a state where they don't feel they can communicate their thoughts or raise their voices.

In that sense, the fact that various people directly 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 does the possibility arise for the side that was oppressing—that is, people without dementia—to notice it and for dialogue to begin.

One more thing: when I think about where we are going as we face this human conflict called dementia, what I thought while raising children was that although the behavior of babies and small children includes many actions in common with the "problem behaviors" of people with severe dementia—such as touching things they shouldn't touch or throwing things—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. Although people might be becoming free beings from norms again through aging and dementia, 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 wonder if our society will become richer, and if the process of living, aging, and passing away will become richer.

Here, I would like to return to the "haziness" regarding "people directly involved" that Ms. Higuchi spoke about at the beginning.

As Ms. Ishihara mentioned, people directly involved on the oppressed side have also come to communicate their thoughts. In Japan, people living with dementia have started raising their voices, and the Japan Dementia Working Group was also formed. But within that, Ms. Higuchi, you are feeling various risks, aren't you?

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

It has become easier for those living with the condition to speak out, partly due to the activities of people like Tomofumi Tanno. People with dementia are increasingly speaking out 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's a good thing," and after speaking, they were hurt by neighbors whispering, "Do they have dementia?"

Furthermore, even when people with dementia are brought into peer support, they don't necessarily have specialized knowledge. Suddenly being asked to act like a counselor just because they are a person with the condition doesn't always go well. While it is good that the spotlight is on those living with dementia, we may have reached a period where deeper and more careful responses are required.

I have also started to hear negative stories, such as people with dementia 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 acting as experts by experience who speak out, from a market logic perspective, I think those who give lectures like that should definitely receive payment.

I usually live and conduct research in Minamata. The storytellers of Minamata disease also spoke for free at first, and it would end with people saying, "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 with dementia" actually is. Most of us will eventually develop dementia. It is not impossible to say that the individuals themselves, their families, and supporters are all broadly "involved parties" (toujisha) related to dementia.

Recently, local activist Riken Komatsu proposed the term "kyoujisha" (co-participants) as a new "margin for involvement" (kakawarishiro), arising from the dilemma that the more one uses the word "toujisha" (involved party) to externalize hardship, the more one creates "non-involved parties." Mr. 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 was in a "position far from talking about dementia." I meant that I am currently distant in society because I am not a person with the label of dementia, nor am I a care worker. However, I think it is very important for the person who is furthest away to talk together.

But actually, I don't really think I'm that far away. 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 myself.

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

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

I'm not quite sure, but I think it's just a matter of whether you think about things in the first person. Ever since I started my care business at age 25, I was particular about having group homes built by log house manufacturers. 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 places with PVC tile floors, plastic tables, and white walls.

They create spaces where they wouldn't want to stay for even five minutes and act as if "this is the site of nursing care," but I think it's really 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 that 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," or "I would want to be treated this way if it were me."

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

For you, Mr. Kato, what kind of existence are people with dementia? There are many people around you who are also people with dementia, including friends, not to mention those who use care services.

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

However, there was talk of change management earlier, and as a way for society to be, conflicts arise because there is change, so there are parts with friction. Conversely, to increase the sense of speed, there are places where that friction must be increased. I think that's why I talk about various things outside and why Mr. Higuchi writes books.

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

From our perspective, it's terrifying. But if we have them do that and swing the direction toward a major social transformation, it would be quite interesting. It might sound strange to say "interesting," 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 Mr. 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 lifestyles, stories, and wisdom of each individual, who are also our seniors in life, as well as the impact of their messages as people with dementia, are very significant.

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

I believe that appointing people with dementia is, in a sense, 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, so please fix it" and that is executed is better, and conversely, I think it's fine to have that much friction.

You mean as a form of change management, as you mentioned earlier. Mr. Higuchi, what do you think?

It is a blessing to be able to work by utilizing one's strengths, and the compensation that matches that is appreciated. 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, "What?"

Another thing that left an impression on me from the internet recently was a story about someone who trusted a facility because it was said to value people, but their mother was given medication because she screamed 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 that provide care like 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 are no places 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 environments and pursue high-quality services for their users and residents. However, as you mentioned, some may have fallen into the assumption that responding by having people take medication 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 reaching the services and policies for the people at the care sites, the individuals themselves, or their families to obtain a rich and secure life.

I think the external audits involving the people concerned, which 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. After all, 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 the people who care for those 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.

Mr. Higuchi, I would also love for you to talk about your desire to "convey the richness of dementia!"

Until now, SNS was an outlet for venting complaints, 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 involved and those around them 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 human relationship, you will continue to be 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, I think 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 you shortly after your book "The Person Between 'Can' and 'Cannot'" was published, you said you didn't want this book placed in the dementia section. You have 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! From this book, the rich daily life of a single individual—rather than just someone with dementia—also comes across, someone who sometimes lets things go with a "well, it's fine" and exchanges smiles even with dandelions by the roadside.

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 easier. We can also become free from the fear of dementia. I hope for a society where everyone can think, "Even with dementia, they are an ordinary person."

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

Visual hallucinations are thought of as abnormal and hideous. 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 parent-in-law 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 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 become happy.

How about you, Mr. Ishihara?

There are broadly three things I am thinking 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 having dementia are seen as blessings, just as they were when I was born. The kind of thing Mr. Higuchi mentioned, about being healed by the words of people with dementia, is actually happening, isn't it? I hope we can increasingly notice such 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 something like that also leads to richness.

The other two are slightly more practical issues. We talk about a society where one can have dementia with peace of mind, but in reality, "with peace of mind" is difficult. The reason it's difficult is not just because having 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 social population is likely to become so in the future, I think it won't be sustainable to leave care and support only to professionals such as those in medical sciences and welfare. I think a fixed relationship between "the person who provides care" and "the person who receives it" is no longer viable. In Minamata, we use the phrase "a society where we can cause trouble for each other," and I hope there will be a richness in changing into a society where we can naturally care for each other, not just as a professional job.

The third point is that 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." The reason we abhor dementia as abnormal or something we don't want to become is because there is a sense of fear. Fear of one's own changes, and above all, fear of becoming unable to follow 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 existences or states to be feared; one realizes they are ordinary. He says the process of being released from that trauma is important.

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

In a low-birthrate, aging society, if you ask who the involved parties of dementia are, it's probably not the people with dementia, but us. So the biggest problem 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. 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 Mr. Higuchi thinking of him 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 when we go to the workplace, we are then separated by expertise. Because we only see things close to ourselves, when we see the ideas of something different, we immediately start attacking.

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 are receiving so many things at the care sites as well.

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

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

Regarding the trauma in Mr. Ishihara's story, people with dementia are hurt by being diagnosed, and among elderly people, some have wartime trauma experiences emerge. However, even though it's the influence of trauma, it's 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 events 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 an ordinary person is in a sense an abnormal person, and there are various individualities within ordinary people. In other words, I thought it's fine to be different, and that the situation where we recognize differences, where having differences is natural, and where we can respect each other spreads. That might be a dream story, but I thought such a perspective is also very important.

While the terms "coexistence" and "prevention" are in the Ministry of Health, Labour and Welfare's Framework for Promoting Dementia Policies, what is important before coexistence and prevention is to notice the internal stigma toward dementia that everyone has, and to focus on the stigma in society. Otherwise, we tend to be deceived by pleasant-sounding words like coexistence, and I think it is more necessary to notice, become aware of, and face the murky stigma within ourselves and within society.

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

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