[Special Feature: Dementia and Society] Shu Kinoshita: Where Does the Mind of a Person with Dementia Reside? — From a Sociological Perspective

2022/11/07

From a sociological perspective, I have researched dementia with a particular focus on family caregiving.

There are several ways to explain what sociology is as a discipline. I usually answer, "It is a discipline that studies changes in social norms—what is considered 'ought to be' in this society." In our society, there are many situations where people think and behave as they "ought to," even if it is not determined by law.

Elderly care is a field filled with such "ought" arguments, or norms. For example, it is pointed out that even with a social security system, Japan is a society with strong norms that families, especially women, should bear the burden of care. In welfare regime theory, it is a society classified under "familialism" (Shizume and Kondo 2013). This is precisely why the Long-Term Care Insurance system, which started in 2000, was even described as a "grand social reform." This is because the insurance was seen as establishing a different ideal of the "socialization of care," countering the social convention that views family caregiving as a "virtuous Japanese custom" (Okuma 2010).

Furthermore, within elderly care, dementia care can be described as a field where the way care "ought to be" has changed drastically. The point of contention was the "mind" of the person with dementia. For example, in the 1970s, people with dementia were "looked at as if they were no longer human," and physical restraint and over-medication were "commonplace" (Miyazaki 2011). This situation gradually changed, especially from the 1980s onward. Caregiving families and pioneering medical and care professionals began to discover that "no matter how far the symptoms progress, the mind of the person with dementia is alive." The heart that feels sadness or joy about one's situation lives on within the person with dementia. Therefore, if caregivers provide "engagement" that utilizes the "personhood" of each individual with dementia, the nature of the dementia symptoms changes significantly, allowing for a fulfilling life despite the illness. This "new dementia care" philosophy is said to have taken root in Japan particularly since the 2000s (Iguchi 2008, Kinoshita 2019). Now, the individual will of the person with dementia is respected above all else, not only in daily life but also in medical choices.

However, there is something I want to consider here. How exactly are we reading the minds of people with dementia? In this paper, I will look at the case of Ms. M. Ms. M cared for her husband, who was diagnosed with Lewy body dementia, at home for about seven years and saw him through to his passing in 2016. Her experience teaches us much about the state of the mind in people with dementia.

Changes began to appear in Ms. M's husband about ten years after he retired at age 63. Visual hallucinations of things that shouldn't be there, forgetfulness (memory impairment), and Parkinsonian symptoms. Upon visiting a hospital, he was diagnosed with Lewy body dementia. Their daughter and son had already become independent, so Ms. M began home care living alone with her husband.

Looking back on that home care, Ms. M speaks particularly vividly about her husband's hallucinations. Ms. M had been gathering information about Lewy body dementia through family associations (self-help groups for caregiving families). There are cases where people see creepy insects or where those hallucinations seem to attack. Some people have even poked at the walls with sticks to drive away such hallucinations, leaving the walls full of holes. Ms. M had heard such stories and was prepared for the caregiving life.

However, the hallucinations her husband saw were children or parents and children, who were simply watching over him. And her husband, too, spent his time watching over them. Since they were watching over him without doing any harm, it was as if they were the "Zashiki-warashi" (house spirits) of Akita (he apparently even took care of the "pee" of those spirits from time to time).

Why did her husband see such hallucinations? Ms. M interpreted it as, "It's because Papa is kind." So, when her husband expressed anxiety, saying "Something is strange," she reportedly answered like this:

"If [Papa] were not a kind person and told them to go away, they would do something bad, but because Papa is quietly watching over them, they don't do anything bad. Some people can see [those children] and some can't. You saw them because you are kind, Papa." (Interview 2019.8.16)

Seeing the figures of children who shouldn't be there in the room indicates that the husband's dementia is gradually progressing.

But for Ms. M, what was important was how those symptoms manifested. She read his kindness through those characteristic symptoms.

As that home care reached its seventh year, difficulties gradually increased. While the husband's symptoms progressed, Ms. M's own health as the caregiver deteriorated. Ms. M experienced hand tremors and angina, and her primary doctor told her she needed to be hospitalized.

Before the husband developed dementia, the couple had set a goal of living at home as much as possible without entering care facilities or hospitals. However, Ms. M being hospitalized now meant the start of facility life for her husband. Therefore, she told herself she would not say it was impossible and would continue caregiving until she "collapsed." Ms. M said she felt that kind of pressure.

However, the husband accepted the facility admission quite readily. He overturned his previous wishes and made a new decision.

Ms. M thinks the reason was this:

"I think he endured going in because he was 'thinking of me.' To let me be hospitalized. Because he's kind. Even if he hated [the facility]." (Interview 2019.8.16)

People with dementia are often regarded as losing their judgment as symptoms progress.

But Ms. M reflects that her husband made the judgment by considering her own personality and health status. In fact, if he hadn't, Ms. M intended to continue caregiving until she "collapsed." And in the new decision her husband made, she once again read his kindness.

Even from these two short episodes, readers will likely understand how Ms. M was reading her husband's mind. Ms. M was carefully observing her husband's condition. What characteristics did her husband's symptoms have compared to other patients? Or were there any changes in his words and actions compared to before? While carefully observing the current situation in this way, she interpreted her husband's symptoms and actions by comparing them with his personality and their marital relationship to date—that is, her husband's life history. Even though people with Lewy body dementia often experience hallucinations of creepy insects, why did her husband, with the same disease, only see children or parents and children? It is because he is a kind person. Why did her husband, who had previously wished to live at home, so readily decide to enter a facility? It was a kind decision to allow his wife to be hospitalized. In this way, Ms. M found meaning in her husband's symptoms and actions.

Takamitsu Yamamoto and Hiromitsu Yoshikawa, who discussed the relationship between the mind and the brain, stated, "It is certain that the brain makes judgment and action possible, but the 'meaning' of that judgment or action does not come from within the brain," and then wrote the following:

[The meaning of an emotion] cannot be considered without the personal history of you and the other person, the intentions of the people surrounding the two of you, and the social context.

What are called problems of the mind are not things that can be settled by considering only brain activity; they also involve the meaning that it has for the person themselves and the people around them. (Yamamoto and Yoshikawa 2016)

Ms. M's husband's brain was afflicted by disease, shrinking and changing in various ways. The disease was progressing, and brain function was declining.

However, despite this, Ms. M did not consider that her husband's mind was gone. The meaning of his symptoms and actions was the issue, and it was perceived as something that should be interpreted by Ms. M's side, as the one caring for him, in light of his life.

I view Ms. M's experience as a typical example of a caregiving family living in the era of "new dementia care." Of course, what becomes the point of interpretation varies from person to person. For example, a wife with dementia repeating "Delicious, delicious" only when she ate anpan (sweet bean bread) (Kinoshita 2021). Or a woman with dementia not wanting to talk about her eldest son (Kinoshita 2019). Using such trivial scenes as clues, caregiving families were searching for what the person with dementia was thinking now and what kind of life was characteristic of that person.

The mind of a person with dementia is found through the interaction that takes place "between" the person with dementia and the caregiving family. Caregiving families do not simply decide the other person's feelings just because they said this or behaved that way. They carefully observed the other person's symptoms and actions and interpreted their meaning.

However, regret is often voiced by caregiving families who have read the minds of people with dementia in this way. "Perhaps I wasn't able to read his feelings well," "I might have hurt him" — caregiving families look back in that way.

Let me introduce what happened later to Ms. M's husband after he entered the facility. After admission, he developed pneumonia, was hospitalized, and passed away at the hospital. When the family gathered after receiving news that his condition had worsened, a nurse at the foot of the husband's bed told the family, "[This person] will not get any better than this."

Ms. M says she still regrets this scene.

At that moment, my husband suddenly opened his eyes and looked at the ceiling. With such incredibly blue eyes. Ah, I thought, this person is trying to accept death now. It was painful. (Interview 2019.8.16)

This nurse probably didn't mean any harm either. Ms. M's husband was in a situation close to death. Gathering the family and explaining the situation might have been a natural procedure as a professional.

However, Ms. M notices that her husband was reacting properly to this situation. That was something unexpected even for Ms. M herself. And she interprets the meaning of those wide-open blue eyes. Until the very last moment, his mind was alive.

Presumably, many professionals involved in dementia have also had experiences like Ms. M's. Realizing that while they thought the person with dementia "didn't understand," they actually "did understand." Regretting, "I hurt the person with dementia, I've done it."

And sometimes interpretations of what the person with dementia is thinking may differ "between" the people providing care (Kinoshita 2019). In current elderly care, even if the family is the main caregiver, various professionals are involved under the Long-Term Care Insurance system. If interaction takes place "between" the person with dementia and a variety of people, the state of the mind found and interpreted there can sometimes conflict.

Please note that such worries and conflicts in dementia care are not due to a lack of knowledge or ability on the part of the caregivers. The idea of new dementia care, "respecting the personhood of the person with dementia until the end," is a very high ideal that our society has reached. Even if one tries to practice it, it does not always go well. The more seriously one aims for care as it should be or better care, the more painful experiences and failures will occur.

Caregiving is not just physical. It is about carefully observing the other person's reactions "between" oneself and the person with dementia, linking them with various knowledge, and interpreting their meaning. We need to recognize that trying to know the mind of a person with dementia in this way is an important part of caregiving.

At the beginning, I asked, "How exactly are we reading the minds of people with dementia?" and in this article, I have provided the answer that, sociologically, it is through the interaction that takes place "between" people.

That means that no matter how far dementia progresses, there are people around the person with dementia—whether family or professionals—who want to respect that person and want to form a relationship with them. Those people, while carrying worries and conflicts, are still trying to know the mind of the person with dementia.

The mind of a person with dementia exists "between" people. That is precisely why, no matter how far the symptoms of dementia progress and no matter how much the brain shrinks, the mind of a person with dementia will never disappear.

Takashi Iguchi (2008), Living with Family Caregiving for Dementia: Clinical Sociology in the Era of New Dementia Care, Toshindo

Shu Kinoshita (2019), Why Families End Up Caregiving: The Sociology of Dementia, Sekaishisosha

Shu Kinoshita (2021), "Where is Dementia Care Heading? — Beyond 'Supporting Personhood'" in Emiko Ochiai (ed.), What to Do About Japanese Family Policy, Minerva Shobo: 164-177

Wakako Miyazaki (2011), Why Not Learn the History of People with Dementia?, Chuohoki

Yukiko Okuma (2010), Narrative Long-Term Care Insurance: 70 Dramas for the Dignity of Life (Vols. 1 & 2), Iwanami Shoten

Masato Shizume and Masaki Kondo (2013), "To Compare Welfare States" in Masato Shizume and Masaki Kondo (eds.), Comparative Welfare States: Theory, Measurement, and National Case Studies, Minerva Shobo: 1-19

Takamitsu Yamamoto and Hiromitsu Yoshikawa (2016), If We Understand the Brain, Will We Understand the Mind? — Brain Science Literacy Training Course, Ohta Publishing