[Special Feature: Dementia and Society] Yusuke Kakei: Solving the Challenges of Dementia Through Design

As the population ages, dementia is becoming a familiar issue for everyone more than ever before. As a designer, I have worked on solving various social issues such as disaster prevention, childcare, regional revitalization, and community development. Within that work, I began to take an interest in dementia about 10 years ago. Dementia is an issue in the fields of medicine and nursing care, and some people may find it surprising that a designer would tackle dementia-related problems. However, I believe that solving the challenges of dementia is a job for a designer.

In the first place, design is something that acts upon human cognitive functions. The act of design is the creation of a series of flows: people perceiving objects, information, and services through their five senses, then thinking, judging, remembering, and taking some kind of action. From a design perspective, the fact that problems arise in daily life due to a decline in cognitive function can be interpreted as a problem with the design of the products, services, and spaces within that person's life. In reality, the world today is full of designs that mislead and confuse human cognitive functions. What kind of problems do people with dementia face, and when and in what situations do they feel difficulty in living? Understanding this is essential for grasping dementia from a design perspective.

However, the reality of current issues surrounding dementia is that "the individual is being left behind." Most books related to dementia are either specialized content for medical and nursing care professionals, or aimed at families caring for parents with dementia, explaining coping methods to reduce the burden of care—such as how to get them to sleep properly, eat, or spend time without becoming agitated.

At such a time, I was given the opportunity to participate in a project that conducted interviews with over 100 individuals with dementia to understand the condition from their perspective. The design project that emerged from this, expressing the world in which people with dementia live and the vision they see, is "The Guidebook for the World of Dementia," and a book was published by Rights Publishing in September of this year.

We define dementia as "a state in which cognitive functions have become difficult to work, resulting in problems in daily life and making it difficult to live." In other words, if it is not difficult to live, it is not dementia. Furthermore, cognitive function refers to the "function of perceiving an object through sensory organs such as the eyes, ears, nose, tongue, and skin, understanding what it is, thinking/judging, calculating, verbalizing, and retaining it in memory."

A decline in cognitive function is a physical issue for the individual. However, the causes of the resulting problems in daily life and the difficulty of living can lie in human relationships with family and others, the living environment, or social systems. By using the power of design to improve human relationships, environments, and systems, there are many areas where the difficulty of living can be resolved.

What kind of troubles do people with dementia face due to the decline in cognitive function? Why do they face these troubles? To clarify this from the individual's perspective, we analyzed the results of interviews with the individuals themselves.

When we actually listen to the "individuals" with dementia, we find that even for the same trouble, the way it is felt, the problems occurring, and the underlying cognitive impairments differ from person to person, and cannot be lumped together as general symptoms.

Let's look at the behavior of "refusing to take a bath," which is often a problem in nursing care settings. This is a story I heard from Professor Satoko Hotta of the Keio University Graduate School.

The reasons why people with dementia do not want to take a bath vary from person to person and are truly diverse. For some, due to sensory issues, the hot water may feel extremely hot, or it may feel unpleasantly slimy. Others may have difficulty putting on or taking off clothes due to spatial awareness issues, or may believe they have already bathed due to a disorder in their sense of time.

Each person feels "I don't want to take a bath" or "there is no need to take a bath" for different reasons. What they find unpleasant or difficult varies by individual, and various cognitive function troubles are involved. Sometimes multiple troubles are combined.

When we listen to the individual's voice, we can see what they cannot do, the reasons why they cannot do it, and what they can do. Once that is understood, it is possible to establish measures accordingly—in other words, to solve it through design.

The trouble of not making it to the toilet while out has an even stronger relationship with design.

When we look for a toilet while out, we visually recognize the toilet sign, then compare the information captured by our eyes with past memories to interpret which of the two signs is for men or women, and then move to the action of entering the toilet.

However, for some people with dementia, this series of actions can be difficult. One cause is a symptom where the field of vision narrows, which is one of the impairments that occurs with dementia.

Normally, we can find toilet signs from various angles. However, for a person whose field of vision has narrowed, if they stand at a position angled away from the front of the sign, they become unable to visually recognize the toilet sign. If the toilet sign is small or the type that is pasted flat against the wall, it becomes even harder to enter their field of vision. As a result of not being able to find the toilet, they may end up not making it in time.

When such trouble occurs, people tend to simply think, "Because of dementia, they can no longer go to the toilet." Then, out of a desire to be considerate so that "the individual does not feel embarrassed," family members begin to respond excessively regarding the toilet needs of the person with dementia. This includes responses such as ensuring someone always accompanies them or having them wear diapers when going out.

That person simply has "difficulty finding the toilet sign" and is capable of going to the toilet on their own. However, the support from those around them robs them of the opportunity to act independently, and as a result, they may become dependent on support, which can lead to a decline in cognitive function. Furthermore, it can lead to significantly damaging the individual's dignity.

Regarding such toilet failures, if we tackle problem-solving from the individual's perspective, there is a possibility that it can be resolved to some extent through the design of toilet signs and location guidance.

There is one more example regarding toilet design.

Inside a toilet stall, it is common to have white toilets and toilet seats installed against white walls and white floors. However, some people with dementia have difficulty recognizing subtle differences in color or the depth of space. In that case, if everything in the space is white, they cannot correctly recognize the shape of the toilet bowl, cannot find the toilet seat, and lose track of where to sit; while they are panicking, they may not make it in time. In response to this, there are examples in places like the UK where they use techniques such as making only the toilet seat part red. By doing so, it becomes immediately clear where they should sit.

In the world of design, there is a concept called "Universal Design," which aims to create designs that are easy for many people to understand regardless of age or ability. In Japan, the development of products, services, and spaces that consider people with dementia has not yet progressed sufficiently. However, design that considers people with dementia will undoubtedly become design that is useful for people with all kinds of disabilities and for everyone.

Yusuke Kakei, "The Guidebook for the World of Dementia," Rights Publishing, September 2021