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

2022/11/07

Unable to sleep in the middle of the night, I happen to turn on the TV and see a commercial for a supplement. Apparently, a certain ingredient is good for improving cognitive function. Looking closely, a small asterisk and text flicker in the corner of the screen. It says 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 "strictly on individual impressions" overflow the world and people spend money on them ultimately enrich this country and lead it to independence and self-respect?

Of course, the emotional burden on family members caring for someone with severe dementia is immeasurable. Being fully aware of that, should society still view dementia as something terrifying, something to be avoided at all costs, and feel anxious about it?

In the 1970s, the thinker and medical sociologist Ivan Illich wrote "Medical Nemesis: The Expropriation of Health" (Japanese title: "Datsu-byoinka Shakai" [The De-hospitalization of Society]). 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. Today, they might be a subject for medical intervention.

In the rural landscapes of the past, an elderly person might walk around for no reason. Villagers would say, "The old man from that house is 'boke' (senile). Before it gets dark, you should take his hand and lead him back home." Today, this is called "wandering" by elderly people with dementia, and disaster prevention announcements blare from the town hall: "So-and-so is missing."

I have no intention of falling into nostalgia and saying "the old days were 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. There are many cases where meticulous care became possible precisely because medical knowledge accumulated. The history of locking people with mental disabilities in small shacks at home, called "shataku-kanchi" (private confinement), is a dark one. For the child running around the classroom, there must have been other ways besides just letting them do so. The past was not good at all. The terms "boke" and "chisho" (dementia/senility) 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. Trying to solve the various challenges of a super-aging society, including dementia, solely from a biomedical perspective has its limits. 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"—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." This 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 someone develops dementia.

For example, in the city of Plymouth in the UK, city buses are aiming to be dementia-friendly transportation. A person with dementia carries a card with their destination written on it and shows it to the driver. If they happen to get confused about where to get off, the driver and those around them can provide support.

In several countries and regions, such as Taiwan, shop staff receive training on the symptoms of dementia so they can support people with dementia while they shop. Such good practices are shared through 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 are initiatives originating from Japan.

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

There is also a trend toward developing designs that are easy for people with dementia to use. The University of Stirling in Scotland is exploring design and architecture that are dementia-friendly. For example, making the toilet door a bright color different from other doors and sticking 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 we reconsider design and architecture from the perspective of "being 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: 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 "support them" 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, and dementia, there is a potential risk that the logic of the supporters—"they must want this"—becomes too strong. When we repeatedly interview 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." If 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 Future Co-creation Hub" was established in 2018, centered around the Keio University Wellbeing Research Center with the participation of the Health and Global Policy Institute and others. 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 United Nations' so-called "Convention on the Rights of Persons with Disabilities" is one example and achievement. People with disabilities gathered from all over the world under the slogan "Nothing about us without us," asserting 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 slope is needed, and the disability is only becoming apparent because the society lacks that slope. 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 individual with a 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 "de-medicalization" and introduced "inclusive society" and the "social model of disability." When introducing such contexts, occasional criticisms arise, such as extreme counter-arguments like "Then do you think medical progress and innovation are meaningless? You don't understand the hardships and intentions of medical professionals," or excessively de-medicalized tones like "That's right, if there is compassion, modern medicine is unnecessary; why don't we do yoga together?"

Building 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 Promotion of 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, researchers and others focusing on dementia prevention and the biomedical elucidation of dementia felt a sense of discomfort if only inclusion was pushed forward. This might also have some merit.

As the discussion became heated, 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 involved, 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 involved participate in such research as cooperating organizations.

A trend of 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 proceeding with 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 has something in common 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 starting to emerge where organizations for those involved in the dementia field 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. Because of this, it seems that world-class innovation will be born from Japan, rather than products with unclear efficacy like those I wrote about 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 small island, there was a middle-aged man who always walked around muttering something, barefoot and half-naked with disheveled hair, perhaps due to mental symptoms. Because of his appearance, the islanders called him "Jesus" with a great deal of joking and a little affection. Jesus always walked around looking happy, and the islanders accepted it. Of course, that was just one moment in his life, and 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 existence and he walked around freely and happily.

The other is the story of the New York subway. A few years ago, a friend returned from a posting in New York. she lived in New York with a small child in a stroller. When I mentioned that compared to the old New York subway, the Tokyo subway is better with many elevators and barrier-free access, 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's from the perspective of dementia, disability, or child-rearing, I think that is extremely important, but it's 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 Plymouth city buses, rather than having some groundbreaking or miraculous system, it's 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.