[Special Feature: Dementia and Society] Ryoji Noritake: Building a Dementia-Inclusive Society—Perspectives from Global Trends

Unable to sleep in the middle of the night, I happened to turn on the television and saw a commercial for a supplement. Apparently, a certain ingredient is good for improving cognitive function. Looking closely, small asterisks and text flicker in the corner of the screen. Something about the definition of improving cognitive function, and that these are strictly individual impressions. It doesn't seem to mean that dementia can be prevented or cured. Does a flow of consumption where products claiming effects based on "strictly individual impressions" overflow the world and people spend money on them ultimately enrich this country and lead to independence and self-respect?

Of course, the hardships faced by family members caring for people with severe dementia are immeasurable. While fully acknowledging that, should society still view dementia as something terrifying, something to be avoided at all costs, and feel anxious about it?

In the 1970s, Ivan Illich, a thinker and medical sociologist, wrote "Medical Nemesis: The Expropriation of Health" (Japanese title: "Datsubyoin-ka Shakai"). Simply put, he presented the concept of "iatrogenesis" and warned that in modern times, disease names are being minted one after another, and human lifestyles are being medicalized and hospitalized.

Indeed, looking back, a child who was a bit restless would have just been running around the classroom in the old days. Now, they might be the subject of medical intervention.

In the rural landscapes of the past, an elderly person would walk around for no reason. Villagers would say, "The old man from that house is a bit senile. Before it gets dark, you should take his hand and lead him back home." Now, it is called "wandering" by elderly people with dementia, and disaster prevention announcements from the town hall ring out: "Mr./Ms. So-and-so is missing."

I have no intention of falling into nostalgia and saying "the past was better." Including the field of children's mental health, many lives have been saved and the quality of life for those involved has been improved through medical discoveries and the development of treatments. It is precisely because medical knowledge has accumulated that detailed care has become possible in many cases. The history of locking people with mental disabilities in shacks at home, called "confinement in private homes," is also a negative part of history. There must have been other ways for children running around the classroom besides letting them do so. The past was not good at all. The terms "boke" (senility) and "chihosho" (dementia/imbecility) were revised, and the term "ninchi-sho" (dementia) was adopted in 2004. It seems the world is moving forward.

However, it is hard to say that we have realized a society where people can feel "it's okay even if I get dementia" just by changing the names of symptoms and diseases or increasing medical intervention methods. There are limits to trying to solve the various challenges of a super-aging society, including dementia, solely from a biomedical perspective. Just because there is no problem from a biomedical perspective does not necessarily mean that the individual or society is happy. We need to build a society where it's not just "it's okay as long as I don't get dementia," but "it's okay even if I get dementia"—the construction of a "Dementia-Inclusive Society." Both the world and Japan are starting to move toward that horizon.

One of the concepts being proposed globally when discussing a dementia-inclusive society is the construction of "Dementia-Friendly Initiatives." It is also referred to as "building a dementia-friendly society." It is an initiative where society itself changes so that it is okay even if one develops dementia.

For example, in the city of Plymouth in the UK, city buses are aiming to be dementia-friendly transportation. People with dementia board the bus with a card showing their destination and show it to the driver, so that if they become confused at their stop, the driver and those around them can provide support.

In several countries and regions, such as Taiwan, shop staff receive training on dementia symptoms so they can support people with dementia when they go shopping. Such good practices are shared through the Alzheimer's Disease International (ADI) and the World Health Organization (WHO), and are spreading worldwide as local governments and private organizations in various countries refer to each other. Many of these good practices include initiatives originating from Japan.

The Health Policy Institute of Japan, the medical policy think tank to which I belong, also co-authored a white paper in 2017 titled "Social Prescriptions for Dementia" and disseminated Japanese good practices domestically and internationally. The word "prescription" is used when dispensing medicine, but social approaches often lead to solving health and lifestyle issues. Society is transforming toward the realization of an inclusive society, and movements to utilize this are spreading.

There is also a trend toward developing designs that are easy for people with dementia to use. The University of Stirling in Scotland explores design and architecture that are user-friendly for people with dementia. For example, making the toilet door a bright color different from other doors and putting a simplified illustration of a toilet bowl on the door. This makes it clear where the toilet is and prevents people with dementia from getting lost in their daily lives.

When reconsidering design and architecture from the perspective of "easy to understand even for people with dementia," points for improvement emerge. The University of Stirling has verified everything from toilet doors to the shape of water faucets and the color of doormats to weave together guidelines.

Whether it is "Dementia-Friendly Initiatives" or "Dementia-Friendly Design," there is one perspective emphasized internationally. That is, co-creation with the individuals themselves is essential for building such an inclusive society.

Many of the initiatives introduced were actually created together with people with dementia. While the desire to "do something for people with dementia" or "provide support" may be beautiful, systems and products created without listening to the voices of actual users can sometimes be useless. At the very least, in general product development, it is common sense to listen to the voices of consumers.

However, in fields such as elderly care, nursing care, and dementia, there is a potential risk that the logic of the supporters—"they must want this"—becomes too strong. When conducting repeated interviews with people with dementia themselves, we hear many voices saying, "We can also contribute to society" and "We are not just in a position to be supported; we have opinions." When you think about it calmly, it's obvious, but it's a perspective that is easily forgotten. Looking at the aforementioned University of Stirling guidelines and recommendations from Alzheimer's Disease International, the importance of co-creating with people with dementia is almost always mentioned.

In Japan, to practice this concept of co-creation, the "Dementia Innovation Hub" was established in 2018, with the Keio University Wellbeing Research Center at the core and participation from organizations like the Health Policy Institute of Japan. It aims to accumulate the thoughts and experiences of people with dementia and have various sectors collaborate with them to create policies and products.

This concept of co-creation has been advocated for many years not only in the field of dementia but also in the context of the rights of people with disabilities. The so-called "Convention on the Rights of Persons with Disabilities" by the United Nations is one example and achievement. People with disabilities gathered from all over the world under the slogan "Nothing about us without us," appealing for their right to participate in society normally as citizens and be involved in related policies, and it was adopted in 2006.

One of the ideological pillars supporting this "Convention on the Rights of Persons with Disabilities" is the concept of the "social model of disability." The barriers that people with disabilities feel in their lives are not caused by the person or the disability itself. For example, it might just be that a small ramp is needed, and the disability is only becoming apparent because society lacks that ramp. This is the thinking behind the "social model of disability," and it can be said to be the driving force for moving away from the "individual model" that finds the cause in the person with the disability and toward creating an inclusive and cohesive society. This way of thinking is clearly one of the foundations for building an inclusive society for dementia as well.

At the beginning, I touched on Illich's concepts of "iatrogenesis" and "demedicalization" and introduced "inclusive society" and the "social model of disability." When introducing such contexts, criticisms that occasionally arise include extreme counterarguments like "Then do you think medical progress and innovation are meaningless? You don't understand the hardships and intentions of medical professionals," or excessively demedicalized tones like "That's right, if there is compassion, modern medicine is unnecessary. Why don't we do yoga together?"

The construction of an inclusive society in fields like dementia and biomedical progress and innovation are not conflicting concepts but complementary ones. Should dementia be viewed as a biomedical disease, or should it be viewed as a phenomenon of life and society in a super-aging society, even though there is early-onset dementia? Both are correct in one aspect, and while they should be complementary, it is a fact that they have existed in a strange structure of conflict.

In 2019, Japan compiled the "Framework for Promoting Dementia Policies." The basic philosophy is to "promote policies with 'inclusion' and 'prevention' as the two wheels of a cart, emphasizing the perspectives of people with dementia and their families, aiming for a society where the onset of dementia is delayed and people can lead their daily lives with hope even if they develop dementia."

It is famous in medical policy circles that there was quite a bit of trouble before it was decided to make "inclusion and prevention" the two wheels. Some of the individuals involved and those promoting an inclusive society opposed the word "prevention." One reason was, "Declaring that 'prevention is important' implies that getting dementia is bad—isn't that stigmatizing us?" This seems to have some merit.

On the other hand, for researchers focusing on dementia prevention and the biomedical elucidation of dementia, it felt strange to have only inclusion pushed forward. This might also have some merit.

Amidst the heated discussion, the original draft for the two wheels, which was "prevention and inclusion," was changed to "inclusion and prevention," and a small asterisk was added to "prevention," with a note in small letters stating, "'Prevention' does not mean 'not getting dementia,' but rather 'delaying the onset of dementia' and 'slowing the progression even after getting dementia.'"

Returning to global trends, in many countries, the construction of an inclusive society and biomedical progress coexist. Many international organizations for those affected, including Alzheimer's Disease International, encourage the participation of individuals in medical clinical trials. To begin with, dementia is a concept that includes several diseases and symptoms, such as Alzheimer's-type dementia, and research toward the development of treatments and drugs is progressing in each field. As an international trend, there are many cases where organizations for those affected participate in such research as cooperating organizations.

A trend emphasizing the participation of individuals in medical research is also emerging from the side of researchers and research institutions. Starting with the UK, the necessity of "Patient and Public Involvement (PPI)" in medical research and clinical trials is being advocated. The concept of PPI is defined as the importance of conducting research together with patients and the public, and it is stated that it is not about researchers arbitrarily conducting research in the name of patients and the public. This resonates with the concepts of "inclusive society" and "co-creation" discussed so far. The Japan Agency for Medical Research and Development (AMED) has also set up a dedicated webpage to promote the importance of PPI.

And in Japan as well, cases are beginning to emerge where organizations for people with dementia are becoming cooperative in clinical trials and cohort studies, overcoming the conflict between "inclusion and prevention."

The coexistence and fusion of building an inclusive society and biomedical progress will advance. Through this, research and development based on scientific evidence will also be promoted. This makes me feel that world-class innovation will emerge from Japan, rather than products with unclear efficacy like the ones I mentioned at the beginning.

Two episodes come to mind when discussing a dementia-inclusive society. One is the story of Jesus on a remote island. In the past, I worked for a US medical humanitarian aid NGO and stayed on a remote island in the Philippines for a total of about eight months to rebuild medical facilities damaged by a typhoon. On that island, there was a middle-aged man who, perhaps due to mental symptoms, was always walking around barefoot and half-naked with disheveled hair, muttering something. Because of his appearance, the islanders called him "Jesus" with a great deal of joking and a bit of affection. Jesus always seemed to be walking around happily, and the islanders accepted him. Of course, that was just one moment in his life; there may have been dark parts I couldn't see, and there may have been medical needs. I don't know now. However, it is certain that the islanders accepted his presence and he was wandering around freely and cheerfully.

The other is the story of the New York subway. A few years ago, a friend returned from a posting in New York. she was living in New York with a small child in a stroller. When I suggested that compared to the old New York subway, the Tokyo subway is better because it has many elevators and is barrier-free, she said that wasn't the case. She said that in New York, if she tried to go down the subway stairs with a stroller, someone would always lend a hand.

Building an inclusive and cohesive society, co-creating with the individuals involved for that purpose, and learning from global trends and systems. Whether it is from the perspective of dementia, disability, or child-rearing, I think that is extremely important, but it is not something that can be realized just by preparing systems and policies.

Even when we talk about overseas examples and global trends, as can be seen from the example of the destination cards on city buses in Plymouth, rather than some groundbreaking or miraculous system, it is more about the understanding and awareness of residents and staff. To build an inclusive society, in the end, I cannot help but feel that the kindness and love of each individual is the foundation.