Interview with Kosuke Sakamoto (English) - Wordgathering

This interview has been published in both English and Japanese (日本語原文（参考）).

Title: Walking in the World of Dementia (認知症が見る世界)
Publisher: Takeshobo (竹書房)

Not knowing the time, the place, or even who the person in front of you is. Why am I here? — This manga depicts the inner world of people with dementia — a world overflowing with anxiety, fear, and loneliness — drawn with deeply affecting sensitivity by the author, a working care helper. It is the second installment following the acclaimed The Faces of My Family, Fading Away: Life with Dementia as Drawn by a Working Helper.

Yu Taguchi created the original story for The World as Seen Through Dementia based on her interviews with Kosuke Sakamoto. Sakamoto, a certified care worker and Tokyo Metropolitan Dementia Care Instructor, served as Yu’s primary source throughout the project.

[Translator’s note: The pseudonym “Mr. Tagawa” has been changed to “Mr. Murakami” because the original pseudonym was too close to the person’s real name. — Yu]

Yu: I already asked you this for the Nikkan SPA! article, but let me ask again for the record: “Why did you enter the world of caregiving?”

Sakamoto: Let me think. I recently remembered something I probably haven’t told you before. The story I usually tell when asked is about my grandfather dying in the hospital. When I was in my second year of high school, my grandfather had bad lungs and was in and out of the hospital.

He’d been going back and forth, but then one night we got a call saying he was in critical condition. The whole family rushed to the hospital, and we were able to be with him at the end. My grandmother seemed strangely detached — just said “He’s dead” — but then my mother, who was his daughter-in-law, the moment the doctor pronounced him, she changed his diaper before the nurses even got to it.

I was a high school sophomore, and watching my mother do that, my first thought was, “Why is she butting in? Just stay out of it.” But when she opened the diaper, there was watery stool inside. I’d been close to my grandfather — he was good to me — but seeing his private parts for the first time, seeing that an adult had soiled himself like that, I felt like I was going to throw up. And then I felt guilty for feeling that way.

I kept thinking: what if this happens to my grandmother someday? I dreaded it. Around that same time, I had to decide on a career path and had absolutely no idea what I wanted to do. I liked drawing, but not enough to go to art school. I had no direction. I vaguely thought postal workers and librarians had easy jobs. Then a senior from my volleyball team said he was going to a vocational school for social welfare. I’d assumed welfare work was all volunteer — I actually asked, “There’s a school for volunteering?” That’s when I first learned it was an actual profession.

Until then, I had no connection to disability or eldercare at all. When those programs came on TV, I’d change the channel — this was back when you still turned the dial. But learning such a profession existed, I thought: at least if I go to that school, maybe I’ll learn how to care for my grandmother. Maybe I’ll be able to change a diaper. So I chose that path, though I wasn’t sure I’d actually work in the field.

There were two tracks — care work and social work. The care track was hands-on caregiving; the social work track was more like casework and counseling, more desk-oriented. At the last minute, I got cold feet and chose social work — I still didn’t want to change diapers. But even in social work, you do care practicums, and when I actually did it, I got used to it almost instantly. The older women at the facility seemed to take a liking to me.

Looking back, I think my need for approval was being met — the sense of self-efficacy, the external validation. It felt good, so I chose direct care work. That’s the story I usually tell.

But here’s what I recently remembered. Ever since I was a small child, whenever I saw an elderly person who looked lonely, I’d feel this tightness in my chest.

Looking back, I think my need for approval was being met — the sense of self-efficacy, the external validation. It felt good, so I chose direct care work. That’s the story I usually tell.

But here’s what I recently remembered. Ever since I was a small child, whenever I saw an elderly person who looked lonely, I’d feel this tightness in my chest.

Yu: Like feeling sorry for them? What kind of elderly person?

Sakamoto: It wasn’t pity, exactly. When I’d see an old man or woman who seemed alone or sad, my chest would squeeze. It wasn’t a feeling of “poor thing” — it was almost like a crush. I can’t explain it. This pang, like something out of a shōjo manga. “What is this feeling?” I never told anyone because I thought it would be embarrassing.

An old man drinking tea alone in a park, sitting on a bench by himself, an elderly person eating alone at a restaurant, or someone whose dentures were out — it would hit me with this wave of tenderness.

Looking back, I think I was probably wired with some kind of innate inclination toward the elderly. Not “respect” exactly — more like tenderness. The way some people just love animals or children or drawing. There’s no reason for it. I think I was born with a trait that made me want to care for aging beings. So I guess I was suited to this work — I didn’t choose wrong.

Yu: You sensed it intuitively.

Sakamoto: I think I just followed my instincts naturally. I remembered this recently when I was giving a training session in Chiba and talking to a young care worker at the after-party who described the same feeling. I thought, “That’s me.” It’s not the trigger that got me into this work, but more like an underlying predisposition — this inexplicable feeling toward older people that probably guided me here.

Yu: When you chose your vocational school track, there was disability work and eldercare. You chose eldercare because of that feeling?

Sakamoto: Disability work just wasn’t where I felt a connection. When I visited facilities for people with intellectual disabilities, I saw staff calling residents older than themselves by childish nicknames — using “-chan” instead of “-san,” treating grown adults as though they were children. I couldn’t do it. I insisted on using polite language and honorifics, and people asked me why. I just couldn’t figure out how to relate. These were people older than me, and somehow the expectation was to talk down to them. I couldn’t bring myself to infantilize them. I knew I couldn’t work in that environment.

Yu: Was this during a practicum?

Sakamoto: A volunteer trip with children with physical disabilities. That was fine — they were kids, so I could relate to them as the age they were. I could be like a big brother to a middle-school-aged boy. But with adults…

Yu: There are still so many care workers who infantilize residents. Has it gotten better?

Sakamoto: Somewhat, I think.

[Discussion of naming conventions in Japanese care and educational settings — the cultural tension between using formal address (-san) versus familiar address (-chan/-kun) for both care recipients and children.]

Sakamoto: But simply put, seeing young people close to my own age in difficult circumstances — I know this isn’t the right way to say it, but it was hard to witness. I may have wanted to look away. It was painful, maybe still is. I don’t think I could fully enter that world.

This career wasn’t born from being a kind person or wanting to serve society. I think I just followed what my brain was naturally drawn to.

— — —

Sakamoto: [On his current role] I’ve been off the front lines for about a year now. I manage the day service, home care, and home-visit care operations, though I’m still technically the supervisor for home visits. I’ve built up people I trust. What’s interesting is that when I step back from sales and outreach, referrals actually increase. In the community, people know I’ve written books and give trainings, so they praise me to my face, but the actual referrals don’t come through me. When I put my staff front and center as managers and stay out of the picture, business improves.

So my role now is working behind the scenes — designing systems, consulting on problems, advising on the tangled interpersonal conflicts among staff.

Yu: Advising on complex interpersonal dynamics.

Sakamoto: Which probably connects to what we’re going to talk about today. When it comes to why I’ve stayed in this work — I was never good at empathizing with people. I couldn’t understand other people’s feelings, so I’d say blunt things and apparently hurt people without realizing it.

I became aware of this as an adult. The turning point was a TV program — “Anonymous Research 200X” — where I first encountered the concept of ADHD. I immediately thought: “That’s me.” Understanding that I’d been lacking in certain areas, that I couldn’t intuitively read people’s emotions — it allowed me to accept myself on those terms. It was a relief.

But I was still overly logical, argument-driven, rigid. When I became a supervisor, then eventually a manager, I’d put enormous pressure on people. I couldn’t understand weakness or the ways people cut corners, so I’d impose my own logic and rules. People probably left because of me.

But as I went deeper into studying dementia, I realized: it’s the same thing. Cognitive impairment affects daily life in small ways, but those small effects can create enormous ripple effects. At its core, though, dementia is about interpersonal relationships. Most of the difficulties in dementia are essentially relationship problems.

If you were on a desert island, you wouldn’t “have dementia” — the symptoms wouldn’t manifest because there’s no one else around. You’d just live your life however you could. The challenges of dementia are interpersonal challenges. And that’s not so different from workplace relationship problems.

Yu: Acquired brain injuries — damage to the frontal lobe or prefrontal cortex — produce similar symptoms.

Sakamoto: Exactly. There are people walking around with weak frontal lobes who don’t have a diagnosis. The difference between them and someone with dementia is a matter of degree. It’s a continuum.

Through studying dementia care, I’ve actually become much better at reading social situations. The empathy I originally lacked — I’ve been able to compensate for it through learning.

Yu: People with ADHD who have higher cognitive abilities can learn, through accumulating examples, to behave the same way neurotypical people do.

Sakamoto: And I think I’ve actually surpassed neurotypical people in some ways. Neurotypical people mistakenly believe they understand other people’s feelings. They say “I can’t believe it” or “That’s impossible” — but that just means they’re only believing what fits their own framework. When something is happening right in front of you and you say you “can’t believe it,” isn’t that your brain malfunctioning?

Yu: Are you comfortable disclosing your ADHD traits publicly, given that this interview will reach English-language readers?

Sakamoto: I don’t have a formal diagnosis, but I have no problem with it at all.

Yu: Good. In this context, hiding it would actually be stranger.

Sakamoto: Right. I understand why some people want to keep it private. But for someone like me who’s been able to function in society, it’s more of a gift than anything. Having a trait, that’s all. The fact that I know I don’t naturally understand people’s feelings — that’s actually a tremendous strength. Because I’ve trained myself not to project my own biases onto other people’s emotions or behaviors. When I observe someone with dementia, I’m less likely to misinterpret what’s happening. So when the interview questions asked about “surprising experiences” in dementia care — I thought about it, and honestly, I’m rarely surprised. I tend to think, “I see. That makes sense.”

Yu: Even with the most challenging cases?

Sakamoto: Messy rooms, maggots, rats — yes, the physical conditions can be shocking. But in terms of human behavior, it’s more like fascination. Closer to being moved than being surprised.

Take Mr. Kato from the manga. What struck me was when I asked him, “You’d just decided to stay — why did you suddenly want to leave again?” And he said: “This mass rises up from my chest, and I just feel like I have to go.” The fact that he could put that into words — that’s extraordinary. There are probably many people who experience the same thing, but almost no one can articulate it. That encounter felt once-in-a-lifetime.

I’ve met many people since who suddenly stand up and storm out, and when I ask why, none of them can explain it. But after Mr. Kato, I understood: sometimes in dementia, behaviors don’t have rational causes. Sometimes it’s hormonal, neurological — a surge that just happens.

Yu: Like menstruation or menopause — women experience these overwhelming waves they can’t explain either.

Sakamoto: Exactly. I spoke to visiting nurses about a patient who kept suddenly leaving, and the female nurses immediately connected it to menopause — the compulsion to clean at 2 a.m., unstoppable crying. One nurse said she understood completely. Another said she’d never experienced anything like it. So it happens to some people and not others, and when it happens, there’s no reason or logic to it. That taught me: not everything needs a “why.”

The intellectual curiosity in dementia care — these moments of discovery — that’s what keeps me going. The ways families think, the psychology at play — it keeps opening up parts of the human experience I’d never had access to before. I feel like I’m becoming wiser. It feels like a bonus — like I’m getting something extra from this work.

Yu: I experienced this with my own father’s dementia. He could be extremely polite and formal, almost like a stranger one moment, then at the end, he handed me 55,000 yen and watched videos of his grandson’s school sports day on a tablet, saying how much he wished he could have gone. Both things coexisted in the same person, right before he died. So when people ask whether someone with dementia truly lacks awareness of their condition — I’d say it was there. It came and went. It’s a gradient.

Sakamoto: Whether someone has awareness of their illness has a huge impact on relationships. When I explain dementia care, I keep coming back to this: it’s about relationships. Whether relationships function well determines the person’s quality of life and how manageable the caregiving becomes.

When someone lacks awareness that they need care, they resist. A loving family member who’s trying to help gets perceived as someone who’s monitoring or controlling them. If cognitive function has declined to the point where self-awareness is compromised — metacognition is weakened — then these misperceptions are almost inevitable.

What care professionals really need to do is help restore relationships — between the person and their family, between the person and staff, between the person and their community. That’s the true calling of caregiving. But almost nobody teaches this. Everyone learns how to give a bath, how to change a diaper, how to manage “refusal.” Nobody teaches how to build trust.

Yu: Can you describe, in your own terms, the state of someone like Mr. Kato — someone with partial awareness?

Sakamoto: An ambiguous person. In my book, I call it a state of guardedness — katakuna. The ambiguity produces that guardedness. When someone’s awareness is partially diminished, they can’t fully grasp their own situation — their own cognition, their physical capabilities. There’s a gap between how they see themselves and how others see them. That gap causes distress and confusion.

Because of attribution error — a normal human tendency — when things go wrong around us, we blame other people or the environment. With diminished self-awareness, this tendency intensifies. Someone might genuinely believe that the people trying to help them are hostile. They refuse care — but it’s not actual refusal. They’re deferring judgment because they can’t evaluate the situation. It’s like getting a cold call about switching your electricity provider: if you can’t tell whether it’s a good deal, you say no. Not because you don’t want cheaper electricity, but because you don’t trust the person offering it.

The same explanation from a stranger feels threatening, but from an old school friend, it feels safe. That’s what trust does. In dementia care, building that trust is everything — but it’s barely taught.

If orientation and self-awareness decline, relationships become fragile. The person becomes guarded. How do we soften that guardedness? That’s the real work of caregiving.

Yu: What do people in Mr. Kato’s state actually want from those around them?

Sakamoto: They won’t say it directly, but I believe what they want is: “Treat me as the person I think I am — not as the person you think I’ve become.” Everyone around them may see their abilities as diminished, but the person themselves still identifies with who they were. They want others to meet them at that self-image. Of course, perfect alignment is impossible — they do need care. But the desire is real.

— — —

[Discussion of awareness and depression: people with preserved insight, particularly those with Lewy body dementia, tend to maintain awareness but may become depressed. Those with less insight — as Sakamoto experienced before understanding his own ADHD — tend to be more content, unaware of the difficulties they cause.]

Sakamoto: Before I understood my ADHD, I was like that. No empathy, no awareness of the trouble I caused — I felt practically invincible. Pure self-confidence. It was only as an adult that I realized otherwise.

Yu: Were you shocked when you first recognized the ADHD?

Sakamoto: The failures kept piling up at work — numbers never added up, I kept losing things. Then I started connecting it to childhood patterns. I thought I was just a hopeless person. But when I learned the concept of ADHD, it wasn’t that I was hopeless — it was just how my brain worked. It was an enormous relief. Like a mystery being solved. Like ice melting. Something clicked into place. If anything, I felt happy.

Similar to what Mr. Kato described — that mass rising in his chest. A revelation.

Yu: I laughed when I found out. My son was being evaluated and the therapist said, “Your numbers are high enough too, Mom.” I learned that normal people actually take baths every day even when they haven’t been outside. That the expression “losing yourself so completely you forget to eat or sleep” — that it’s not just an idiom.

[Discussion of how economic security affects the ability to accept a diagnosis — a writer Yu interviewed said he’d accept ADHD instantly if he had 100 million yen. When ADHD traits create professional disadvantages, acceptance becomes much harder.]

— — —

Yu: What would you want to say to English-language readers about The World as Seen Through Dementia?

Sakamoto: I imagine in the U.S., most people who need care can’t access it without significant wealth. Family caregiving must be the norm.

Yu: In Japan, with universal health insurance, the barriers to psychiatric care are lower. People can live without a formal diagnosis.

Sakamoto: You really can survive in Japan without a diagnosis. It’s actually a remarkably tolerant society in some ways — more diverse paths are accepted than people realize.

Yu: The manga I’ve been reviewing in Japanese magazines — like Satoshi Miyakawa’s The Illness with No Name — they never state the diagnosis outright. In that story, the older brother is a recluse who causes enormous trouble for the family, but nobody seeks a diagnosis because they consider it shameful. It turns out to be autism, but the manga never names it directly. Japanese manga, like Japanese journalism, doesn’t start from “This person has X disorder, therefore Y.” The World as Seen Through Dementia doesn’t prescribe anything. It doesn’t say “do this” or “do that.” That absence of conclusions is unusual for international readers.

Sakamoto: So it’s the style itself that’s unusual for international readers.

Yu: In my essay for Wordgathering about Hiruko — the deity abandoned by Izanagi and Izanami — Hiruko was cast away as a disabled child, picked up by fishermen, and became one of the Seven Lucky Gods. No effort required, no revenge, no proving himself. In Greek mythology, an abandoned child must either take revenge or become extraordinarily useful to earn divine status. Japanese gods are gentler.

Sakamoto: Japan has eight million gods — yaoyorozu. That inclusiveness is in the culture.

Yu: In Japan, we leave yohaku — interpretive space. In architecture, in Kyoto’s buildings, there’s always space left deliberately empty. That aesthetic doesn’t exist in the same way in English-speaking cultures, where the impulse is to fill everything with words.

Sakamoto: Think of horror films. In the Japanese horror film Ju-On — The Grudge — there’s no resolution, no explanation. The curse just spreads and the film ends. In a Hollywood film, there’d be an origin story, a monster to defeat, a logical structure. Even horror follows cause and effect. But I personally find it more frightening when there’s no explanation. The uncanniness of the unexplained — that’s what makes it interesting. Japanese people naturally gravitate toward lingering resonance — yoin — over neat conclusions. Yohaku and yoin are the same impulse.

The manga is like that too. The first chapter of Mr. Kato’s story could have ended there and I would have been satisfied. It had that completeness through restraint. No manufactured happy ending. Real. When Mr. Kato is told “thank you” and feels a moment of rescue — that’s the power of care. Not a cure, just a moment of connection.

Yu: That connects to what I wrote about Ebisu — the idea that you can simply belong somewhere, disability and all.

Sakamoto: Without a role, people can’t feel like they belong. At our day service, we make sure everyone has a role. Nobody wants to leave a place where they have a purpose. But it has to be genuine, not forced.

For American readers — please don’t try to carry everything alone as a family.

Yu: If the systems permit it.

Sakamoto: When families must provide care themselves, here’s my advice: stop calling them “Mom” or “Dad.” Use their given name. The reason family caregivers get so frustrated is that their brain keeps expecting the person to fulfill the role of parent — an expectation built over decades. When that role can’t be fulfilled anymore, it causes panic and anger. Some family caregivers describe a moment of sudden acceptance — often when they first have to put a diaper on their parent. The brain finally registers: this isn’t my mother anymore, not in the way I knew her. After that, the frustration eases.

You can create that shift deliberately by changing how you address them. Instead of “Mom,” call her by her name — “Mrs. Tanaka.” It creates a slight professional distance. Even adjusting your speech patterns helps. In English, that might mean switching from “Mommy” or “Mom” to “Mrs.” or “Ms.” followed by their surname.

The key is: don’t expect the same person you relied on for decades. That expectation, when unmet, is what destroys both of you.

Yu: English is inherently more logical than Japanese, which is why it became the global business language. Japanese is ambiguous by nature — we grow up with parents who get angry for reasons they never explain, and we accept that as normal. In a logic-based language, everything gets framed as right or wrong. If you’re losing pencils and missing deadlines, the logical framework says you’re failing. There’s no room for “that’s just how it is.”

Sakamoto: Binary moral judgment. When dementia introduces ambiguity into a person’s world — and it does — and you’re in a culture that structures everything through logic, that loss might be more devastating than it is in Japan, where ambiguity was already the default.

— — —

Sakamoto: Here’s something that did surprise me. A man I’ll call Mr. Murakami (pseudonym) — a large, short-tempered man. His temper was part of his personality, not the dementia — he’d always been rough around the edges, the kind of guy who’d bluster and bluff. But he also had a soft side, especially with children.

One day, the toy company Takara Tomy sent us a talking doll called Ami-chan for a trial. The elderly women at the day service adored her. But it was Mr. Murakami who became utterly enchanted. He spoke to Ami-chan as though she were a real child — gently, tenderly. His face was the softest I’d ever seen it. Eventually, he said he wanted to make Ami-chan his daughter and take her home.

I called his wife: “Mr. Murakami wants to bring Ami-chan home. I’m not sure what will happen — he might get confused or agitated. But he’s so serious about this. Can we let him?” She agreed. So I told him, “You can take Ami-chan home.” He said thank you — and put her in his bag.

That’s what struck me. He treated her as his own child, but he put her in a bag. The boundary between doll and child was genuinely blurred for him, yet somehow both realities coexisted. She was a doll you carry in a bag AND a child you want to register on your family record. He took her home, showed her to his wife, doted on her — but by bedtime, he started worrying about legal paperwork, how you’d actually adopt a child, all the practical complications. He decided to return her the next morning.

Yu: He returns her precisely because he knows she’s a doll!

Sakamoto: A doll and a daughter simultaneously. That ambiguity taught me something profound about how disorientation works. With disorientation, the ability to make ambiguous judgments deteriorates — short-haired women get called men, because the person can only use simple cues. But for Mr. Murakami, the ambiguity was still alive. The doll was genuinely both things at once.

I treated Ami-chan as a doll — my policy is never to lie. Mr. Murakami didn’t seem troubled by that. He accepted both realities.

[Mr. Murakami was later admitted to a facility after an incident at home. Sakamoto advised the facility to give him meaningful tasks — even just hanging towels — to create a sense of purpose. They said it was impossible. So Sakamoto sent Ami-chan, with careful instructions: the doll is not a magic fix. Use her as a bridge to build relationships. Show her to Mr. Murakami when he’s calm, let the staff see his gentle side, then use that connection to build trust. They used her as a quick fix instead. Within a week they returned her, saying she’d stopped working.]

Sakamoto: I don’t actually like using dolls routinely. When you see an elderly person cradling a doll, the outside perception is that they’ve lost their faculties. It can diminish how others see them as a person. That concerns me. But the reason it worked so well at our facility was the psychological safety — nobody judged anyone for it. Everyone could be tender without feeling watched.

Yu: You’re saying that for people whose world is becoming more ambiguous, you have to provide safety. Otherwise, of course they’ll resist and lash out. You have to be able to tolerate the ambiguity.

Sakamoto: If you keep insisting on “correct” answers, on fixing what’s “wrong,” it’s painful for everyone. Accepting that ambiguity is the default — that’s what we have to learn.

— — —

Yu: Does awareness decline steadily as dementia progresses?

Sakamoto: Actually, now that you ask — I don’t think it does. A gradual loss of awareness isn’t really what I observe. People who lack awareness from early on tend to stay that way. People who maintain awareness tend to keep some of it.

Yu: Research has challenged the idea that awareness drops off a cliff.

Sakamoto: It might be relatively fixed from the onset. Overall cognitive function declines, yes, and the component capacities that support awareness — memory, orientation, metacognition, social cognition — those do weaken over time. But awareness itself seems more stable than people assume.

Yu: My father still said “I wish I could have gone to the sports day” on his deathbed, two years into the diagnosis. That wasn’t a cliff.

Sakamoto: The word “awareness” might mean different things to each of us — what you mean, what I mean, what Diane means. In your father’s case, it’s possible that your increased visits actually activated capacities that had been dormant. When brain functions go unused, they atrophy temporarily. But with good relationships and stimulation, people can recover to their potential ceiling.

That doesn’t mean more contact is always better. Moving someone from independent living into a family home can actually make things worse — now they’re exposed to friction, corrections, observations they didn’t have to deal with alone. On a desert island, the brain still declines, but there’s no interpersonal conflict, so dementia doesn’t manifest as a problem. When you add people, you add friction.

The timing of facility placement needs to be very careful. Let people live independently as long as possible — even if the house is a mess. Visit when you’re in a good mood. Let helpers handle the rest. That creates the richest possible relationship.

Yu: So when you told me back then to just visit when I could — you meant all of this?

Sakamoto: Rather than sacrificing everything to move in together, let your father live his own life and show up with a smile once in a while. When he needs something, be there. When you see something that makes you happy, share it. But 24/7 together would have been nothing but stress for both of you.

When ambiguity reaches its peak — when the distinction between people and places stops mattering, like Mr. Murakami’s doll — that may be the right time for facility care. At that point, the loneliness and vulnerability of living alone outweighs the loss of independence. A warm facility with friendly young staff who greet you every day can feel like home.

— — —

Supplementary Note from Kosuke Sakamoto

After reviewing the transcript, I wanted to clarify my understanding of “awareness of illness” (病識, byōshiki), since Yu, Diane, and I may each be using the term slightly differently.

I define awareness of illness as: the ability to recognize one’s own disability or limitations and to realistically understand their degree and impact on daily life.

In dementia, awareness almost always declines. I see four main contributing factors:

(1) Metacognition — the ability to recognize that one’s own cognitive function is declining.

(2) Memory — the capacity to remember and recall, which enables a person to track their own failures and changes over time.

(3) Orientation — the ability to fill in uncertain or invisible information through inference, which supports judgment and decision-making.

These three factors are further influenced by (4) attribution error — a fundamental human cognitive tendency to blame external causes when things go wrong. When factors (1), (2), and (3) decline, attribution error is amplified. This is how it manifests:

— A missing wallet → “Someone stole it” (not “I misplaced it”)

— Difficulty dressing → “The clothes are wrong” or “Someone interfered”

— Family members watching over or helping → perceived as control or surveillance

— Staff guidance → perceived as monitoring

Regarding whether awareness declines gradually: orientation and memory do decline progressively, so awareness should shift over time as well. However, metacognition is less clear-cut. Some people show reduced metacognition from the very beginning — and in those cases, the decline is pronounced. Others retain metacognitive capacity and experience real anxiety and fear about their future.

Here is what I have observed: when a person with dementia is surrounded by warm relationships and feels psychologically safe, their remaining cognitive functions — memory, orientation, executive function — tend to perform at their fullest capacity. This makes it easier for them to participate socially, which in turn reduces attribution error and creates emotional room to accept their own limitations.

This is why a person who moves from a poor environment to a good one can appear to have “improved awareness” or even “improved dementia.” Conversely, when relationships break down or dignity is compromised, the same person may be evaluated as having “declining awareness” or “worsening BPSD.”

I cannot say whether this framework is medically or academically precise. But it is what I have learned through years of practice.

— — —

Sakamoto: Let me tell you about Hiroko (pseudonym). She came to our day service with her husband — she was the more capable one, caring for him. She had mild dementia herself. After her husband passed away, her dementia gradually progressed. She was living alone. I told her family: she’s managing for now. Let’s watch for signs — when hygiene or toileting become unmanageable, that might be the time.

Toileting stayed fine until the end. But her expression changed — she looked perpetually anxious, her brow always furrowed. When our staff visited for meal preparation, she clearly didn’t want us to leave. The loneliness was becoming unbearable.

I discussed it with her family: the balance has tipped. The freedom of living alone no longer outweighs the isolation. She moved into a rehabilitation facility. A week later, I went to deliver a photo album — we always make these for the facility staff, showing the person in their better days. I hadn’t planned to see her, but the staff suggested it.

Hiroko had adored me. At our day service, she’d follow me with her eyes, calling out “Boss!” every time I walked by. I was sure she’d remember me. The staff asked, “Do you think she’ll recognize you?” I thought: of course she will.

She didn’t. Complete blank.

But as we talked, her expression gradually softened. We chatted about nothing — “Aren’t you cold?” — and there was a kind of familiarity without recognition. She was wearing clean, well-coordinated clothes now. Her hair was neat. Her face was calm.

I thought: forgetting is beautiful. If she’d remembered me, she’d have spent every day missing me, wanting to come back. Because she forgot, she was freed from that longing. And it’s not just forgetting — it’s that her current life is satisfying enough that the past doesn’t pull at her.

Yu: Families feel guilt about placing someone in a facility. Then they visit and the person doesn’t recognize them. “She forgot me.” But maybe that’s actually a sign of something good — that the person is content enough not to need to remember.

Sakamoto: If she remembered and kept longing, that would be suffering. Forgetting is like letting go of attachment — almost in the Buddhist sense. From the person’s perspective, less suffering.

But families need help understanding this. Professionals should explain that being forgotten can be a positive sign. The person is no longer clinging to something they’ve lost. We should help families reframe it: your mother has graduated from being “Mom.” Now call her by her name. Treat the relationship as something new.

Yu: In all the care workers I’ve interviewed, nobody has ever said what you just said — that professionals have a responsibility to help families understand this.

Sakamoto: It’s similar to grief care. You’re losing someone who’s still alive. Losing their identity, their role.

Yu: That’s ambiguous loss — the grief of someone who’s present but absent. Professionals need to offer that kind of support. You’re remarkable, Sakamoto. I mean it.

— — —

Yu: In America, there likely isn’t this middle stage — home care, then day service, then rehabilitation facility, then nursing home. The graduated system doesn’t exist. That’s why I had to interview someone at a day service. People at this stage can still communicate, still tell you what they actually feel. In a nursing home, that window has closed. At home alone, there’s no professional observer. The day service is the exact intersection.

Sakamoto: [On the name of his facility, Nihongi Kōsaten — “Nihongi Intersection”] The name comes from a nearby intersection, but I also wanted it to feel like a café — a place where people simply gather. “Intersection” because lives cross there. I didn’t want to call it “Something Day Service.” I didn’t want to load it with caregiving ideology. Just a place where people come, and whatever meaning emerges, emerges from them.

— — —

Yu: [On the manga adaptation] Yoshida adapted quite a bit from the original material — some of what you told me was too complex for manga form.

Sakamoto: That’s inevitable. There are limits to what manga can express per page.

Yu: I only interview people at the management level because front-line workers often can’t see the whole picture. Yoshida was a care worker, not a manager, so some things didn’t translate perfectly in the adaptation. But the result was wonderful.

Sakamoto: That’s the manga artist’s skill. Keeping things accessible is what matters.

Yu: If I’d written the adaptation myself, it would have been much darker — I come from the subcultural end. But the episodes were strong enough that the book earned excellent reviews on Google Books.

— — —

Yu: I think Diane is going to love your perspective — especially the concept of ambiguity. I’ll send her the full transcript of everything you said today, minus the casual conversation, translated into English. The actual article will come after that. I’ll get your approval before anything is published, as always.

Sakamoto: Sounds good. Let’s meet up when things calm down.

Yu: Thank you, Sakamoto. Good night.

About Kosuke Sakamoto

President and CEO of Kurashiasu Co., Ltd. Certified Care Worker and Tokyo Metropolitan Dementia Care Instructor. Sakamoto has been working in elder care since 1996. After serving at a special nursing home for the elderly, he went on to launch and manage a wide range of community-based care services, including home care support, home-visit care, assistive equipment provision, welfare transportation, small-scale multifunctional home care, and group homes. In 2012, he founded Kurashiasu Co., Ltd., and currently operates day services, home-visit care, and home care support offices in the Nishi-Tama area of Tokyo. Drawing on his frontline experience, Sakamoto advocates for an approach to dementia care that looks beyond surface-level behaviors to understand the emotions, relationships, and living environments that shape them. He shares this perspective through training programs, lectures, and writing. His published works include Surprisingly Effective Ways to Ease the Stubbornness of People with Dementia (Subaru-sha, co-authored with Ruka Fujiwara) and 60 Tips to Prevent Inappropriate Dementia Care: The Pitfalls of “Good Intentions” (Chuohoki Publishing, co-authored). Sakamoto also serves as a board member of NPO 9612G Project and as a certified nature observation instructor, leading fieldwork activities such as nature walks and camping to broaden the perspectives and awareness of care professionals.

About Yu Taguchi

Yu Taguchi is a welfare journalist based in Tokyo, Japan. The original story creator of the published manga, The World as Seen by Dementia (Takeshobo, 2023), she has contributed over 50 articles on disability, caregiving, and social welfare to major Japanese publications including Bunshun Online (文春オンライン), Nikkan SPA!, and Shueisha Online (集英社オンライン). She founded and served as editor-in-chief of “Aideal Hiroba,” a disability and minority-focused web platform that reached one million page views in its first year of operation. Yu Taguchi is the mother of a child with a disability. “My Son’s Favorite God Is the One His Parents Threw Away,” her first publication in English, is also published in Japanese—with thanks to the author—in this issue of Wordgathering.