Cognitive rehabilitation
Online ISSN : 2436-4223
Special Contribution
Needs of cognitively impaired individuals and their caregivers after brain injury
Rei Shibamoto
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JOURNAL OPEN ACCESS FULL-TEXT HTML

2025 Volume 30 Pages 27-52

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Abstract

Over 20 years ago, when my husband was 43, he suffered a subarachnoid hemorrhage. Although his life was saved, he was left with severe cognitive impairment after brain injury (hereafter referred to as 'CIBI' ). After undergoing rehabilitation and vocational training, he was able to return to work under a disability employment program two years and four months after the onset, marking his return to society. However, due to prominent symptoms such as severe memory impairment, emotional instability, and confabulation, he cannot live freely as he sometimes causes trouble for those around him. Furthermore, because he lacks awareness of his condition, he does not perceive these limitations as problematic. While I am grateful that he can live within a small, comfortable world where he is understood, I hope that society as a whole will come to understand and support people with this kind of disability. I truly believe that if that happens, my husband could live more vibrantly and freely, and that even his symptoms might improve. That, I believe, would bring true happiness not only to my husband but to all people with CIBI. And more than anything, I hope that greater support will be given to families and caregivers—those who are worn out by providing care and support to individuals with disabilities, and by the lack of resources for those living with the condition and by society’s limited understanding of this invisible disability.

抄録

20年以上前の43歳の時に私の夫はくも膜下出血を起こし、命は助かったものの、重い高次脳機能障害が残った。リハビリと職業訓練を受けて発症から2年4か月で障害者枠で就労、社会復帰を果たした。けれど重い記憶障害という顕著な症状のほか、感情コントロールができず作話もあることで、周囲に迷惑をかけてしまうため、自由に行動できていないし、病識がない本人もそれを問題だと思っていない。でも私は、夫が理解あるぬるま湯的狭い世界で生きていられることに感謝しつつも、社会全体がこの障害を理解し支えてくれることを望む。そうすれば夫はもっといきいき自由に行動できて障害症状も改善されると信じるし、それが夫をはじめとする高次脳機能障害者の幸せであると信じる。そして何よりも、当事者へのサポートやこの障害への世の中の理解や支援の不足により疲弊している家族(ケアラー)への支援が、もっと進むことを願う。

1.Introduction

It is said that there are 500,000 individuals with cognitive impairments after brain injury (CIBI) in Japan, but the actual number has been unclear since the last survey was conducted by the Tokyo Metropolitan Government in 2008, more than 15 years ago. In order to address the issue properly in the modern era, we need to reassess the number. One thing to be aware of is that there are people who don’t realize they have this disability, and such people cannot report it. There are also people who have not been diagnosed by doctors.  Without a diagnosis, they cannot proceed with various procedures (such as insurance claims, applying for disability pensions or certificates, and finding employment for people with disabilities). It is necessary for patients to be diagnosed during hospitalization, as many do not return to the hospital after discharge. Without knowing about the disability, patients and their families will face great struggles after discharge. A challenge in obtaining a diagnosis and treatment is that there are also medical professionals who lack understanding of this disability. There is currently no support system in place, and its establishment is urgently needed.

It has been 20 years since my husband acquired this disability, and I will summarize our experiences so far and express my hopes for society in the future as a family member of a person with disabilities.

2.From Onset to Present (Currently Employed)

2.1 Onset, Surgery, Hospitalization, Discharge

Over 20 years ago, in September 2004, my husband, aged 43, suffered a subarachnoid hemorrhage while working. Rather than the typical description of "feeling like being hit in the head with a hammer," he described the sensation as "numbness in the back of my head”, and waited for it to subside while squatting in the hallway. As the numbness didn't subside, colleagues who were concerned suggested he should take a taxi to go to a hospital. He said he wanted to go to a hospital a little ways from his company, which he had seen on TV before. However, he lost consciousness in the taxi, and the driver took him to the nearby JR Tokyo General Hospital in Shibuya (Figure 1).

Figure 1 Collapsed due to a subarachnoid hemorrhage

The source of the hemorrhage couldn't be found that day, so doctors waited until the next morning. During that time, the hemorrhage re-ruptured, and emergency surgery was performed the following morning. Fortunately, the aneurysm on the anterior communicating artery was located and successfully clipped. According to the surgeon, the inside of his head was like a "hurricane" due to the blood. During the two-week period of vasospasm, there were moments of danger, but he overcame them and was moved out of the ICU. Even after overcoming his life-threatening situation and returning to a general ward, he spent most of the time sleeping, occasionally saying nonsensical things. About two months after the clipping surgery, he underwent a VP shunt surgery due to a diagnosis of normal pressure hydrocephalus, as the ventricles in his brain were enlarged. His strange statements continued (for example claiming to have worked with someone who had died or that he had just been to Afghanistan that morning). However, early rehabilitation had a positive effect, and he was able to walk out of the hospital three months after the incident. At the time of discharge, he was diagnosed with "cognitively impairment after brain injury (CIBI)" (Figure 2).

Figure 2 Discharged from the hospital

2.2 Symptoms experienced by my husband

My husband exhibits symptoms such as memory impairment, lack of awareness of his condition, difficulty controlling behavior and emotions (social behavioral dysfunction), childishness, dependency, executive dysfunction, attention deficits, reduced judgment and motivation, confabulation, inability to manage finances, verbal abuse, perseveration, and topographical disorientation (Figure 3).

Figure 3 Memory impairment

2.3 Rehabilitation, Vocational Training, Employment

2.3.1  Rehabilitation (Recovery phase hospital)

My husband attended rehabilitation at the Nissan Tamagawa Hospital, which was close to our home. For about a year and a half, he received therapy twice a week. This hospital became his only place outside of home, and the occupational therapist was the only person he regularly interacted with besides family. The therapy involved activities like crafts, quizzes, and cooking. After a year and a half, as there were no significant changes in his condition, the rehabilitation was concluded (Figure 4).

Figure 4 Rehabilitation

2.3.2 Vocational training

At the age of 44, I felt it would be better for my husband to get out of the house, so I first considered a welfare workshop as a daytime activity. However, the workshops in Setagaya, where we live, required physical disabilities to participate, and since my husband did not have any physical disabilities, he was not accepted. After searching for places that could stimulate his brain, I found the Employment and Life Support Center of Persons with Disabilities ”i-career”. I went there with my husband who didn’t have the will to go there or take action by himself, and consulted about what we(he) should (could) do. The center introduced us to the Tokyo Vocational Center for Persons with Disabilities although he was not yet capable of working. We had no other choice but to go there with a faint hope that he might be able to find a job.

First, there was a brief interview, and then he was tested to see if he could do sorting; tasks like sorting parts into the correct drawers. Fortunately, he was accepted and started going there. Since he could not go there alone, I accompanied him. But after visiting the center twice, we were recommended to the National Vocational Rehabilitation Center for Persons with Disabilities in Makuhari, Chiba where many people with CIBI were undergoing vocational training. At that time, the Tokyo center mainly served people with physical disabilities, and Makuhari center was deemed more appropriate for people with CIBI.

For since the Makuhari center seemed to prioritize people who were likely to return to work (those who were on temporary leave), it seemed impossible for my husband, who had no job to return to. But by good luck, there was one remaining spot, and he was able to join a 3-month pre-employment training course. Being in this program, where he interacted with others and received rehabilitation, was beneficial. By the end of the program, my husband's eyes changed — his expression became more confident and resolute. It had been two years since the onset of the illness.

Before graduation, my husband and I were invited to a meeting with representatives from the Hello Work(job center), the Tokyo Vocational Center for Persons with Disabilities, National Vocational Rehabilitation Center for Persons with Disabilities, and Employment and Life Support Center of Persons with Disabilities “i-career” to begin job-hunting under the disability employment quota. Looking back now, I believe that visiting the National Vocational Rehabilitation Center for Persons with Disabilities in Makuhari was a major turning point (Figure 5).

Figure 5 Road to returning to society

2.3.3 Employment

It is generally said that people with CIBI fail in about 30 job interviews, but before even reaching 10 interviews, my husband was hired by his current employer where he has been employed for 19 years. Now at the age of 63, he is likely to continue working until his retirement at the age of 65 in a familiar workplace. This has only been possible due to the understanding and support from his workplace, for which we are deeply grateful.

When he first joined, a job coach was assigned to him, and every time a problem occurred, “i-career” provided support. Now, his supervisor and I communicate easily via email, and if any concerns arise regarding his behavior, they immediately reach out to me, and I consult with his primary doctor and “i-career”. His primary doctor provides him with medication and advice, offering encouragement. The trust established with the primary doctor is the foundation that allows us to live with peace of mind. “i-career”, the support center has actually visited my husband's workplace and holds meetings with both his supervisor and him, discusses issues with his work attitude and reviews his job content (Figure 6).

Figure 6 Hired under a disability employment quota

@Shufunotomo Co.,Ltd.

“Hibi koji-chu” by Rei Shibamoto

  • Note1: My husband, who acquired his disability in 2004, was able to progress smoothly to employment in 2007 due to the government's CIBI support model program, which had started in 2001 with a 5-year plan. Had his disability been earlier, the process might have been much harder.
  • Note:2 If the employer lacks understanding of the disability, they may choose not to hire the person at all. Even if they do, without the ability to properly accommodate the disability, the individual may quickly become discouraged and end up leaving the job early.

3.Problems and Responses – Outside home (Company) and home

3.1 Outside home (Mainly Company)

3.1.1 Situation at work

The reason my husband was hired by the company was said to be his personality. Even today, awareness of CIBI remains limited, but 20 years ago, it was even less known. There were hardly any books on the subject, no blogs or online information from individuals or families dealing with it. The human resources department recruiter laughed and said, “I had no idea what CIBI was, but your husband seemed like a genuinely kind person, so I thought it would work out and decided to hire him.”

Due to his condition, my husband became easily irritable and somewhat childlike, however, he had always been a gentle, cheerful, and kind person by nature, and that personality fortunately worked in his favor.

When he first joined the company, he was assigned physically active tasks such as cleaning and mail distribution. But sorting the mail turned out to be quite difficult (I actually went to observe and found it challenging myself), and he wasn’t very good with the copier or shredder either (he once broke the shredder by overloading it with paper). The company patiently worked through trial and error to find tasks that suited him (Figure 7).

Figure 7 Understanding and support from the workplace

3.1.2 His current work in his 17th year at the company

His tasks now include: Cleaning vacuum filters, taking mail to the post office (located on the first floor of the building where the company is), setting the cloth in front of the restroom mirror, refilling alcohol disinfectants, cleaning meeting rooms, making labels (Tepra), laminations, entering data on the computer, setting up rooms for training sessions, creating Excel spreadsheets and sorting accounting slips.

3.1.3 Main challenges and responses at work

3.1.3.1 Irritability and inappropriate behavior for time and place (TPO)Results

At work, my husband would become furious when a colleague didn’t respond to his greetings. In his frustration, he would shout “Good morning!” loudly right next to the colleague's ear or demand, “Say something!” The colleague became frightened, and other employees were shocked and uncomfortable. This situation occurred several times, and each time, his supervisor would warn him. After receiving these reports, I consulted his doctor. The doctor would try to reason with him, saying, “Everyone lives their lives freely; you’ve done your part by greeting, and that’s enough.” However, the behavior did not improve. Eventually, the company took steps to separate their desks to minimize contact, which resolved the issue.

Regardless of whether it was a peer or a supervisor, my husband would blurt out harsh words when angry, such as “That’s filthy!” or “This is so stupid!”

He also had a habit of slamming cabinet doors loudly, which startled and unsettled people around him. His supervisor repeatedly warned him, and his doctor prescribed herbal medicine and increased his dosage of valproic acid to help control his emotions, though those measures showed limited effect (Figure 8).

Figure 8 Emotional incontinence

3.1.3.2 Memory impairment

On one occasion, he forgot he was working and was found resting in the lobby, which led to a warning from his supervisor. He often forgets the names of coworkers and supervisors sitting right next to him every day. At home, he struggles to recall what he has done at work that day.

One common coping method for memory impairment is taking notes, but due to a lack of insight into his condition, he didn’t feel the need to take notes for a long time. Even during vocational training, he was given a special “memory notebook” in a binder and was trained on how to use it, but the habit didn’t stick.

However, over the years, he gradually began to recognize the importance of taking notes, and now it seems he’s finally starting to build that habit (Figure 9).

Figure 9 Finally started taking notes

3.1.3.3 Topographical disorientation

On one occasion he had received permission to go shopping briefly during work hours, but he got lost and couldn’t return for two hours. He eventually went to a police box and showed the ID card he wore around his neck, and the police helped guide him back. Since then, he has stopped leaving the office during working hours. The two hours were recorded as time off.

3.1.3.4 Carelessness and decreased judgment

He once wore a colleague’s coat home by mistake, so now he’s been instructed to keep his coat in a personal locker instead of the shared coat rack. He also brought home someone else’s clear umbrella, so his family put a sticker on his umbrella to make it easily identifiable.

After being taken by his supervisor to a traditional izakaya with tatami seating where shoes are removed, he came home wearing someone else’s shoes—apparently because he didn’t want to bother finding his own (Figure 10).

Figure 10 Impaired judgment

3.2 At home

3.2.1 His behavior at home

He becomes angry easily, with a tense expression and rough movements. His outbursts seem almost theatrical, as if he’s putting on a performance—though he himself doesn’t appear to be acting. Before his injury, he was a calm person and never displayed this kind of exaggerated anger.

He often spends time watching TV or listening to music on CDs. He occasionally goes shopping at nearby supermarkets, convenience stores, or bakeries. However, he tends to buy unnecessary items, leading to wasteful spending.

3.2.2 Major issues and responses at home

3.2.2.1 Childish behavior

He once jokingly encouraged our dog to chase a neighbor’s outdoor cat (We also have a cat at home who gets along well with our dog, so it seems he was trying to entertain the dog). And the frightened cat strained a muscle while trying to escape and required a week of veterinary treatment. We paid the medical expenses and offered our apologies.

Since then, I’ve told my husband not to walk the dog, or if he must, to avoid passing by that particular house (Figure 11).

Figure 11 Became childish

3.2.2.2 Irritability and emotional outbursts

These episodes happen suddenly, making it impossible to prepare or prevent them in advance.

For example, at a crowded venue, he once tripped over a platform, became enraged, and kicked it forcefully in front of everyone, shocking those around him (Figure 12).

Figure 12 Irritability

While waiting in line, he suddenly began play-fighting by kicking our young daughter, causing us to leave the line.

In the park, he once walked around laughing loudly for no apparent reason. When I hid from view, he became visibly anxious and stopped.

Although he takes valproic acid and herbal medicine, increasing the dosage causes a decline in motivation, so adjustments are difficult. It often feels like there’s no other option but to manage things as they are.

3.2.2.3 Lack of social awareness or consideration

He sometimes behaves rudely toward people who have treated him kindly—saying things such as “I want to go home,” or “I’m not hungry,” right in front of them, which has offended others.

On crowded commuter trains, where tensions can run high, he often ends up in small altercations with other passengers. For example, someone may bump elbows with him, or he might sit down just before someone else was about to take the seat, leading to arguments. Since he tires easily, he tends to sit down immediately when a seat becomes available.

(But if he sees someone with a pregnancy badge, he does give up his seat. Yes, he is kind by nature.)

To reduce the risk of conflict, I’ve had him wear a Help Mark on his bag to indicate his disability. While the Help Mark isn’t yet widely recognized in society, it does seem to help to some extent.  In cases where a conflict has occurred with a specific passenger, we avoid that train by adjusting his commuting time (Figure 13).

Figure 13 Emphasizes having disability

3.2.2.4 Verbal abuse

He sometimes yells harsh insults at the television—or at family members.

In such moments, we turn off the TV or have him sit farther away from it or ignoring him to help him calm down.

4.What we wish for society –A place for the persons with disabilities, and a support for caregivers

4.1 Spaces for persons with disabilities

4.1.1 The disabled persons have fewer places (activities/range of actions)

People living with disabilities tend to lose their place in society, as their range of activities and engagement decreases.

For example, in our case, my husband has memory impairments—sometimes he remembers things correctly, but other times he remembers them incorrectly. Those mistaken memories can lead to confabulation.

While my daughter, colleagues at my husband's workplace, and I understand his symptoms—such as confabulation and irritability—caution is needed when he interacts with people who aren’t aware of his condition. For this reason, we try to avoid situations where he might come into contact with those unfamiliar with his symptoms.

It is a problem that my husband's range of activities has inevitably become limited, but it's also problematic that he himself doesn’t seem to mind or feel bothered by this restriction. Moreover, my husband isn’t even aware that his range of activities has become limited. Because of this condition, he has fewer opportunities to receive the positive external stimulation he would otherwise be able to enjoy. I know it may sound harsh, but rather than living only in the comfort of a "lukewarm bath" surrounded by family and coworkers who understand his condition, I want my husband to go out more, meet different people, and have a variety of experiences—just like anyone without a disability.

Additionally, while my husband is employed, I hope that individuals with CIBI who want to work but are unable to do so will be given opportunities for employment. This is because employment for individuals with CIBI helps improve their symptoms, provides them with an income, and contributes to their sense of purpose and joy in life. Moreover, this provides caregivers with more time and mental relief, enabling them to improve their own work, childcare, and overall family life, which helps resolve many of the challenges faced in households with individuals with CIBI. If society’s understanding of this disability expands, individuals with CIBI, including my husband, will be able to go out freely.

For this reason, raising awareness and providing support for this disability are extremely necessary (Figure 14).

Figure 14 Lack of initiative

4.1.2 Creating spaces and finding a place

The ideal places for individuals with disabilities are those where their condition can improve, places that are enjoyable, where they can find a sense of purpose, expand their world, earn an income, and live in a calm and stable environment… These are the same needs as for able-bodied individuals.

4.1.2.1 Encounters with new people and the world through the game of Go

My husband is unaware that his range of activities has decreased, and he has no desire to expand it (he doesn’t question or ask for anything in that regard). While I was feeling frustrated about this, we were unexpectedly invited by someone who plays Go. Seizing the opportunity, I decided to attend with my husband to a Go group and a gathering for individuals with disabilities. As we kept going there about once a month, we got to know more people, and my husband started smiling more often. On top of that, since playing Go requires mental effort, it's good for stimulating the brain. And because my husband felt a bit nervous, he remained calm and reserved, and there were no episodes of emotional outbursts in that setting.  In particular, my husband deeply respected and liked Mr. Masamichi Kitani, who organized the Go gatherings and is the son of the renowned Go master Minoru Kitani from the Showa era, spanning from 1926 to 1989 in Japan. Because of those feelings, he kept attending the gatherings, and through them and the people he met there, his world expanded.  Before long, I began to feel that playing Go might help improve symptoms of cognitive impairment, and I’ve even presented that idea several times. 

Of course, it's not just Go—I believe it's important to have spaces where people can casually come together, whether it's through shogi, mahjong, sports, or anything else, regardless of disabilities, age, or gender (Figure 15).

Figure 15 Started playing Go

4.1.2.2 Improvements in symptoms

Regarding executive function disorder, since he is working, efficiency is valued and he has become more self-reflective and aware of this. He has started to think about more efficient ways to act. As for memory impairment, he seems to remember more things. But,while that brings me hope,we also sometimes encounter situations where he completely forgets what happened just moments before, which can be discouraging.

After 20 years with this disability, the caregivers in our family have become more accustomed to our situation, my husband’s various symptoms have gradually stabilized, and we have arrived at a relatively stable life.

It has been 20 years since the disability occurred, and while the family, as caregivers, has become more accustomed to the situation, the person affected has gradually had various symptoms stabilize, leading to a relatively stable life. When the disability first occurred, both my husband and his caregivers had a hard time, but as a family we believe that this disability improves over time, especially when the environment is properly adjusted.

4.2 Support for caregivers

4.2.1 Problems faced by the spouse, the caregiver

Right after being discharged from the hospital, I had no idea what to do. There were so many necessary procedures to complete that it was overwhelming and hard to keep track of everything. I lacked the physical strength, time, and information to cope. Back then—20 years ago—there was very little information available. I didn’t know anyone else going through the same thing, and that sense of isolation was crushing. I fell into a depressive state. With the family breadwinner suddenly incapacitated, we also faced serious financial difficulties.

The problem that has grown over time is as follows.

4.2.1.1 Loneliness caused by the lack of understanding from those around me

Even though I gathered the courage to confide in my friend about my worries, there was no one who knew about CIBI, and I wasn't understood at all, which made me feel even more lonely. And I despaired of friends who didn’t understand me, felt angry, and thought of committing suicide just so they would realize the depth of my agony. Fortunately, my mother who I telephoned before taking action stopped me in a very good way (by bursting out laughing). Exhausted by the lack of understanding and ongoing conflict with my husband's mother (his father has already passed away), I made the decision to cut off contact for two years. That choice finally allowed me to regain some emotional stability. Two years later, with a calmer mind and more emotional space, I reconciled with my mother-in-law. I came to realize that taking some time apart from someone I was struggling to get along with had not been a mistake.

4.2.1.2 Financial hardship

After suddenly losing the family's main breadwinner, I faced serious financial difficulties. I had a young child to raise, ongoing expenses like education costs, a mortgage on a recently purchased home, and daily living costs piled up. Yet, I couldn’t work because I had to care for my husband. At that time my husband was (and continues to be) indifferent to our household finances—or rather, he seems unable to understand them at all. Even though he used to work at a bank, he’s become like a child when it comes to money, completely unable to comprehend or make financial decisions.

4.2.1.3 Exhaustion

On top of the loneliness, the lack of information 20 years ago made everything even harder. I became physically and mentally exhausted from trying to gather information, handle various procedures, and do everything I could to support my husband's reintegration into society.  Nowadays, there are family support groups across the country, and the internet offers a wealth of information through blogs and other sources, so the situation has improved compared to back then (Figure 16).

Figure 16 Isolation and exhaustion

Anyway, because caregiver isolation and fatigue are serious and significant issues, providing support for caregivers is essential. When caregivers are well-supported and in good health, they are better able to support the person they are caring for.

Some of the specific supports that caregivers need are as follows;

4.2.2 Necessary support

4.2.2.1 Online information

The website of the National rehabilitation center for persons with disabilities is full of useful information, including local support organizations, family groups, and events. It's important to raise awareness of this website among people with disabilities and their families. (http://rehab.go.jp/brain_fukyu/)

Having access to information and being connected with others can greatly support and empower families (Figure 17).

4.2.2.2 Offline information

Not all individuals and families have access to the internet, so it is important that this type of disability is more widely covered in television, newspapers, and other media that everyone can see or read. This can help people recognize their own condition and encourage them to take action. Additionally, it’s important to raise public awareness of this disability, not just among those directly affected, but also among the general public. At the very least, pamphlets and other informational materials about the disability should be available at municipal and local government offices.

Figure 17 Gather information

4.2.2.3 Understanding and support in daily life settings

It is important to promote greater understanding and support for this disability in everyday environments where individuals and their families live—such as in local communities, workplaces, and schools.

4.2.2.4 Building connections

Individuals with this disability and their families often face isolation and tend to struggle with their problems alone. It is important to provide support and information that helps them connect with others who share similar experiences, as well as with professionals in areas such as government, healthcare, welfare, and education.

4.3 Others

One thing I am concerned about is that, after 20 years of living with a disability, my husband at age 63 now seems more forgetful, makes more mistakes, and misunderstands more. When I asked my doctor about it, he explained that because his brain has been damaged, my husband’s cognitive functions are likely to decline faster than in people without such injury -- and that is unavoidable.

I am also aware that, when my husband has physical problems, I tend to think, “it’s because of the CIBI.” or “it’s because of the stroke he had. But it’s important to be cautious because this mindset can cause us to overlook other serious illnesses.

Symptoms vary greatly among individuals. Recently, more people with the condition themselves have been speaking out. One concern is that when people see individuals with milder cases -who speak up actively and manage to live independently through tremendous personal effort – they might assume that all people with CIBI have these capabilities and do not need support. This could potentially stop helping hands from reaching out. I hope people understand that individuals with CIBI exist on a spectrum ranging from mild to severe. And that all of us, regardless of the degree of impairment, are struggling in our own ways.

5.Conclusion

People with CIBI will continue to live with the aftereffects of events such as strokes and traffic accident. The number of individuals is not small, reaching hundreds of thousands. Still, it cannot be said that society is fully aware of the issue, and there remains a lack of support and understanding. Not only the individuals affected but also the families who support them face great hardship, and in the future, greater support and understanding will be needed. In particular, I hope there will be more focus on supporting caregivers, who are often neglected.

What I want to emphasize in the end is that CIBI is a condition that can improve. Compared to 20 years ago, my husband has become much more stable, and his various symptoms are improving. With the passage of time, environmental adjustments, and support, this condition can improve, and both the individual affected and the caregivers can become more comfortable and happy. Therefore, both the person affected and the caregivers must continue to advocate for understanding and support from society without giving up, and it is necessary for society to change. I believe that, in the end, this will lead to a happier society as a whole (Figure 18).

Figure 18 Keep walking forward!

References

1. Employment and Life Support Centers for Persons with Disabilities

Employment and Life Support Centers for Persons with Disabilities have been established throughout Japan with the aim of promoting and stabilizing employment for persons with disabilities. These centers provide integrated support for both employment and daily living in local communities, working in coordination with related institutions in fields such as employment, healthcare, welfare, and education, to help persons with disabilities achieve independence in their professional lives. https://www.mhlw.go.jp/stf/newpage_18012.html

2. Tokyo Vocational Center for Persons with Disabilities

The Tokyo Vocational Center for Persons with Disabilities provides support and services for individuals with disabilities who are seeking employment, aiming to retain jobs, or return to work. The center staffs vocational counselors specialized in disability support and works in close cooperation with Hello Work (Public employment security offices) and Employment and Life Support Centers for Persons with Disabilities. Services are also extended to employers who are considering hiring or currently employing persons with disabilities, as well as to related organizations supporting the employment of people with disabilities. https://www.jeed.go.jp/location/chiiki/tokyo/

3. National Vocational Rehabilitation Center for Persons with Disabilities

The National Vocational Rehabilitation Center for Persons with Disabilities was established based on the "Act on Employment Promotion of Persons with Disabilities." It operates regional and local vocational centers, conducts research on vocational rehabilitation, develops relevant methods and techniques, and disseminates the outcomes of its work to promote the employment of persons with disabilities. https://www.nivr.jeed.go.jp/organization/index.html

4. Model Project for Supporting Persons with Cognitive Impairment after Brain Injury

The Ministry of Health, Labor and Welfare implemented a five-year Model Project for Supporting Persons with cognitive impairment after brain injury from FY 2001 to FY 2005. This initiative, conducted in collaboration with the National Rehabilitation Center for Persons with Disabilities and 12 local governments, aimed to ensure that individuals with cognitive impairment after brain injury could smoothly and appropriately access medical and welfare services.

As part of the project, a set of diagnostic criteria for cognitive impairment after brain injury was developed to clearly define the target population for services. Each participating municipality established a support center and assigned a support coordinator, facilitating the seamless transition from medical care to welfare services and promoting successful social reintegration of individuals with cognitive impairment after brain injury.

Following the completion of the model project, its efforts were expanded nationwide. In October 2006, the initiative was succeeded by the Project for the Promotion of Support for Persons with Cognitive Impairment after Brain Injury and Related Disabilities, implemented as part of the Community Life Support Projects under the Act on the Comprehensive Support for Persons with Disabilities (formerly the Services and Supports for Persons with Disabilities Act). https://www.fukushi.metro.tokyo.lg.jp/documents/d/fukushi/2022handbook-7shou

5. Hello Work

Hello Work (Public Employment Security Office) is a comprehensive employment service agency operated by the Japanese government (Ministry of Health, Labor and Welfare). It provides a variety of free services to both job seekers and employers looking to hire. https://www.mhlw.go.jp/stf/seisakunitsuite/bunya/koyou_roudou/koyou/hellowork.html

6. Help Mark

The Help Mark is a symbol created to make it easier for individuals to receive support. It is intended for people who may need assistance or consideration, such as those with prosthetic limbs or artificial joints, internal disorders, intractable diseases, or those in the early stages of pregnancy—conditions that may not be immediately apparent from the outside. The mark helps inform others around them that they may need support. https://www.fukushi.metro.tokyo.lg.jp/shougai/shougai_shisaku/helpmark

7. National Rehabilitation Center for Persons with Disabilities

A government organization that supports the independent living and social participation of people with disabilities. It provides medical and welfare services, develops new technologies and devices, conducts research to inform national policy, fosters the training of professionals, and engages in international cooperation on disability-related issues.

・ Center for Information and Support for Cognitive Impairment after Brain Injury

https://www.rehab.go.jp/brain_fukyu/

8. Minoru Kitani (1909~1975)

https://www.nihonkiin.or.jp/player/htm/ki001060.htm

A professional Go player who played Go, a strategy game where players take turns placing stones on a grid, aiming to control more territory by surrounding and capturing their opponent's stones.

9. All illustration used here is either quoted from “Hibi Koji-chu” by Shufunotomo Co., Ltd., or newly drawn by the author, Rei Shibamoto.

1.はじめに

国内に現在50万人いると言われている高次脳機能障害者だが、実際の数は2008年に都による実態調査で推計を取られて以来15年以上年経つのでわからない。時代に即した対応を考える上でも、また数を数える必要がある。その上で注意すべきことは、自分や家族がこの障害を負っていることに気づいていない人がいること、そういう人は申告できない。また、医師に診断されていない人もいること。診断されないと、その後の諸手続き(保険金受け取り、障害年金や障害者手帳の申請と取得、障害者雇用など)にも進めないので、患者は少なくとも入院中に診断される必要がある。というのは、退院するともう病院へ来ない場合も多いからである。自分や家族の障害について知らないと、退院後彼らは大変な苦労を背負うことになる。ただ、この障害への理解が乏しい医療職の人たちもいるので、そこも課題である。 まだ支援法がないので、その成立が急がれる。

夫がこの障害を負って20年が経過、これまでのことをまとめ、家族として今後に望むことを記した。

2.発症から現在(就労中)

2.1 発症・手術・入院・退院

今から20年以上前の2004年9月、43歳の夫は仕事中くも膜下出血を起こした。よく形容されるような、「頭をハンマーで殴られたような」、というのではなく、同僚には「頭の後ろがしびれる。」と言い、廊下でしゃがんでしびれが収まるのを待っていたそうだ。なかなかしびれが収まらないので、心配した同僚の勧めに従い、タクシーで夫が希望した、当時テレビで話題だった少し離れたところにある病院を受診することにしたそうだ。だがその車内で意識を失ったようで、運転手が倒れた場所のすぐそばにあったJR東京総合病院に運んでくれた。ところがその日は出血場所がわからず翌朝まで様子見となり、その間に再破裂したため、翌朝手探りの手術となり、幸い出血元の前交通動脈瘤が見つかりクリッピング成功。執刀医の話では、頭の中は「(血で)ハリケーン」だったとのこと。2週間にわたる脳血管攣縮期も、一時は危ない時があったもののなんとか乗り越え、集中治療室(ICU)を出られた(図1)。

図1 くも膜下出血で倒れる

だが命の危機を脱して一般病棟に戻ってもほとんど寝ていて、たまに目を覚ますととんちんかんなことを言っていた。脳室が拡大していくので、クリッピング手術から約 2か月後に正常圧水頭症という診断のもと V-P シャント手術を受けた。けれどおかしな発言は変わらなかった(実際は亡くなっている人とそこで作業していた、とか、午前中アフガニスタンに行ってきた、とか)。だが超早期からのリハビリが功を奏し、倒れた3か月後には歩いて退院。退院時には「高次脳機能障害」と診断されていた(図2)。

図2 退院

2.2 夫にある症状

記憶障害・病識の欠如・行動と感情のコントロールができない(社会的行動障害)・ 幼稚化・依存・遂行機能障害・注意障害・判断力や意欲の低下・作話・金銭管理ができない・暴言・保続・地誌的障害など(図3)。

図3 記憶障害

2.3 リハビリ・職業訓練・就労

2.3.1 リハビリ(回復期病院)

回復期病院として、家から通いやすい日産厚生会玉川病院へリハビリに通い、以降約 1年半、週2回のリハビリを受けた。夫にとっては家庭以外唯一の貴重な「居場所」であり、作業療法士の女性が彼にとって唯一の家族以外に頻繁に接する人だった。内容は作業療法士の指導による工作、クイズ、料理など。1年半経って症状にあまり変化がなくなったので、リハビリは終了となった(図4)。

図4 リハビリテーション

2.3.2 職業訓練 

しかしまだ44歳、家にいるだけより外へ出て行った方がいい、と妻は考え、日中の居場所としてまずは作業所を考えたが、住んでいる世田谷区の作業所は身体障害があることが利用条件だったため、身体障害がない夫は受け入れてもらえなかった。その後も夫の脳に刺激を与えられるところを探して、あちこちへ夫を連れて訪ね歩いているうち、障害者就業・生活支援センター「アイキャリア」に受け入れられた。そしてそこからすぐ東京障害者職業センターの検査を受けることを勧められた。夫はとても仕事ができそうになかったが、そこしか次の手はなかったので、そこで検査を受けることになった。

検査は、例えばネジ部品を正しい引き出しに入れられるか(仕分け、ピッキング)などのテストだった記憶がある。夫は1人で当時池袋のサンシャイン60ビル内にあったセンターへは行けなかったので、私が付き添った。

そしてそこへ2回ほど行った 1か月もしないうちに、今度は幕張にある障害者職業総合センターを勧められた。東京障害者職業センターは、身体障害者の利用が多いそうで、高次脳機能障害者には幕張のそこが良いとのことだった。けれど幕張のセンターは、復職がほぼ確実な人を優先的に受け入れていて(休職期間が終われば復職しなくてはならない人たちは、職業訓練が急を要する)、起業したばかりで会社も消滅、戻るところのない夫は無理だと思われた。

ところが運よくあと1名入れるとのことで、すぐ3か月の就業前訓練プログラムコースに潜り込めた。そこで初めて家族以外の人と一緒に生活したりリハビリ受けたりして刺激を受けたことが良かったのか、コースが終わるころには夫は随分しっかりした表情になり、特に目つきが変わってきた。受障から2年が経っていた。

そこを卒業する前に私と夫はハローワーク、東京障害者職業センター、障害者職業総合センター、アイキャリアの4者に会議に呼ばれ、障害者枠での就職活動に入った。今改めて振り返ると、トントン拍子で就労への道が開けてきたけれど、この障害者職業総合センターに行ったことが重要な転機だった、と思う(図5)。

図5 社会復帰までの道のり

2.3.3 就労

普通、高次脳機能障害者は面接しても30社くらい落ちると言われていたが、10社も面接しないうちに今の会社に雇用されることになり、現在勤続19年目である。今63歳なので、このまま慣れた職場で65歳の定年退職まで無事勤め上げられそうである。それも職場のご理解とご支援に支えられてきたおかげと感謝しかない。入社当初はジョブコーチ、その後なにかあるとアイキャリアがサポートしてくれた。今は上司と私の間で気軽にメールし合い、問題行動など心配事が発生するとすぐ連絡があり、私は主治医やアイキャリアに相談している。主治医は薬を処方してくれたり、アドバイスをくれて励ましてくれる。この主治医との間に築かれた信頼関係が、私たち夫婦が現在安心して暮らせている一番の基盤だと思う。また、アイキャリアは夫の会社へ実際赴き上司や夫と面談、夫の勤務態度の問題点や業務内容の見直しをしてくれている(図6)。

図6 障害者枠で就労

©主婦の友社『日々コウジ中』柴本礼

  • ※1. 2004年に受障した夫が2007年に就労するまで順調に進めたのは、当時国(厚労省)の高次脳機能障害支援モデル事業が2001年から5年計画で始まっていたタイミングだったことも影響したかもしれない。それ以前だったらもっと難しかったかもしれない。
  • ※2. 雇用側にこの障害への理解が不足していると、雇用してもらえない。雇用してもらえても、障害に対応できず、本人も嫌になって早期に離職してしまう。

3.問題と対応 ~自宅外(会社)と自宅~

3.1 自宅外(主に会社)

3.1.1 会社での様子

夫が会社に採用された理由は、人柄だと言われた。今でも高次脳機能障害はあまり知られているとはいえないが、20年前はもっと知られておらず、本もろくになければ当事者や家族が発信するブログなどのネット情報もなく、人事部の採用担当者も「高次脳機能障害はどういうものか全然わからないけれど、ご主人のお人柄が良いと思ったので、なんとかなると思い採用しました。」と笑っていた。夫は障害で怒り易く子供っぽくなってしまったが、たしかに元々は穏やかで陽気、優しい人なので、それが幸いした。

入社当時は掃除や郵便物配布など、体を使う仕事を任されたが、郵便物仕分けが結構難しく(私も実際に見学に行き、難しいと思った)、コピーやシュレッダーもうまくできず(シュッレッダ―機に紙を入れ過ぎ壊してしまう)、夫に合う仕事を試行錯誤しながら見つけて与えてきてくれた(図7)。

図7 職場の理解と支え

3.1.2 入社17年目現在の仕事

掃除機のフィルターの清掃、郵便を出しに行く(郵便局は会社が入っているビルの1階)、トイレの台ふきんの設置、アルコールの補充、会議室の掃除、テプラ、ラミネート、研修がある時に使う部屋のセッテイング、伝票の仕分けなど。

3.1.3 会社でのこれまでの主な問題と対応

3.1.3.1 易怒性・TPOを考えない言動

夫は会社の同僚に「おはよう」と挨拶しても返事を返してもらえないことに激昂、彼の耳元で大声で「おはよう!」と怒鳴ったり、「返事しろよ!」と要求したりする。相手の方は怯え、周囲の社員は驚き不快に感じる。このことは何回か繰り返され、そのたびに上司から注意を受け、上司から報告を受けた私が夫の主治医に相談して、主治医からは「皆自由に生きているのだから、気にしないように。あなたは挨拶をするという務めを果たしたのだから、それで良い。」と説得されたけれど一向に治らない。今は会社側が2人の接触を極力少なくする対策を取ってくれたことで、この問題は解決。

同僚であろうが上司であろうが関係なく、カッとすると暴言を吐く(「汚ねえなあ!」「くっだらない!」)。

キャビネットを大きな音を立てて閉めるので、周囲は驚き、怖がったり不快に思ったりする 。上司からは注意、主治医からは感情を抑える漢方を処方されたりデパケンの量を増やされる(あまり効果は見られない)(図8)。

図8 感情コントロールができない

3.1.3.2 記憶障害

仕事中に仕事を忘れてロビーで休んだり、毎日隣に座っている上司や同僚の名前を忘れ、思い出せない。家に帰ると、会社でやったことをよく思い出せない。 記憶障害への対策として、メモを取るという補完作業があるが、夫は病識が欠如しているためメモを取る必要を長い間感じなかった。職業訓練でも「メモリーノート」という特別仕様のメモが入ったバインダーを渡されて使う訓練を受けたが、夫の場合定着しなかった。 だが長年仕事をしているうえでメモの必要を感じ始め、発症から15年以上経ちようやくメモをする習慣が少しついたようである(図9)。

図9 やっとメモを取るようになった

3.1.3.3 地誌的障害

勤務時間中に短時間で買い物に行く許可は得たが、迷子になり2時間戻れなかった(交番に行って首に掛けていた社員証を見せ、帰り方を教えてもらった)。それ以降、勤務中の外出はやめた。

3.1.3.4 いい加減 判断力の低下

同僚のコートを着て帰ってくるので、自分のロッカーにコートを入れるようになった。同僚のビニル傘を持って帰ってくるので、夫のビニル傘に、自分のだとわかるよう、家族がシールを貼った。上司に居酒屋に連れていってもらうと、他人の靴を履いて帰ってくる。探すのが面倒だからそうしたようだ。パソコンで仕事と関係ない芸能ニュースなどを見ている。上司から妻に相談あり、上司と妻から強く諌められ、一時期見なくなったが、また見出したので、パソコンを使用しない業務にして、この問題は解決した(図10)。

図10 判断力の低下

3.2 自宅

3.2.1 自宅での様子

すぐカッとなり表情も険しく動作も乱暴になる。まるで芝居しているかのように大げさな怒り方だが、本人は芝居しているつもりはないようだ。障害を負う前は穏やかな人でこんなオーバーに怒ることは皆無だったのに。

テレビを見たり、CDで音楽を聴いていることが多い。近所のスーパーやコンビニ、パン屋に買い物行くくらい。買い物は余分なものを買うことが多く、お金を無駄使いしている。

3.2.2 自宅でのこれまでの主な問題と対応

3.2.2.1 幼稚化

近所の外飼いの猫に、自分の犬をふざけてけしかける(家にも猫がいて、犬と仲がいいので、犬を喜ばせようとしたらしい)。逃げようとした猫が筋肉痛になり1週間通院、医療費支払いお見舞いもする。妻は夫に犬散歩させないか、してもらう時はその家の前を通らないように注意する(図11)。

図11 幼稚化

3.2.2.2 易怒性・感情失禁

どれもいきなり起こるので、事前に対応できない。例えば、多くの人がいる会場で台に躓いて激昂、衆人環視の中、台を派手に蹴とばし周りに驚かれる。列に並んでいる時、小さかった娘と人前で蹴り合いの喧嘩を始めたので、列からはずれた。公園で意味なく大声で笑い続けて歩いた時は、私が陰に隠れると、キョロキョロ不安そうになり、やめた。デパケンや漢方も、量を多くすると意欲が減退するので増やせないから、このままでいるしかないのだろうか(図12)。

図12 易怒性

3.2.2.3 気遣いできない

せっかくおごってくれた人に失礼な態度を取り、怒らせてしまう(「早く帰りたい」、「お腹すいてない」と相手の前で大声で言う。)、通勤の満員電車の中、イライラしている人が多いせいもあり、よくほかの乗客と小競り合いしている様子(肘がぶつかったとか、ある人が座ろうとしていたのに、夫が横から滑り込んで座ったようで、ずっと怒鳴られていたとか。夫は疲れ易いので座席が空くとすぐ座ってしまう。けれど妊婦マークを付けている人には、自分の席を譲っているそう)。

夫には障害があることをアピールして少しでも問題発生を抑えたく、ヘルプマークをカバンにつけさせている。まだそんなにヘルプマークは社会に定着しておらず知られていないけれど、少しは役に立つようだ。トラブルが起きた相手が乗る電車とは、時間をずらす(図13)。

図13 障害を持っていることをアピール

3.2.2.4 暴言

テレビに口汚く罵ったり、家族に罵る。テレビにののしる時はテレビを消したり、テレビから離れて見てもらう。

4.社会に望むこと ~当事者には居場所を 介護者には支えを~

4.1 当事者には居場所を

4.1.1 当事者は居場所(活動・行動範囲)が減る

たとえば我が家の場合、記憶障害があるが覚えていることもあれば間違えて覚えていることもあり、その間違えたままが作話に繋がる。作話や易怒性などの症状があることを知っている私や娘、会社の人たちはよいが、知らない人たちと夫が接触する時は注意が必要だし、接触する機会を作らないようにしている。必然的に夫の行動範囲が狭くなっていることが問題であるが、夫自身は狭くなった行動範囲を嫌だと思っていないのも問題。この障害のために、本来なら得られるはずの良い外的刺激を得る機会が減っている。言葉は悪いが、夫の障害のことを理解している家族や職場というぬるま湯の中でだけ生きているより、もっと外に出て色々な人と会い、色々な経験をしてほしい。健常者と同じように。

また、夫のように就労していない当事者には、就労の場を与えてほしい。というのは、障害当事者の就労は、障害症状を改善し、収入も得られ、本人の生きる喜びと力になる。と同時に、介護者の時間と心にもゆとりが生まれ、自身の就労や育児を含む家庭全体の生活立て直しが可能となり、 障害者を抱えた生活における問題点の多くが解決に向かうから。

世の中のこの障害への理解が広がれば、夫も自由に出て行けるので、その点においても、この障害への周知(学習)と支援は非常に必要である(図14)。

図14 自分から能動的に動きたがらない

4.1.2 居場所づくり、居場所探し

居場所として理想なのは、障害がより改善する場所、楽しい場所、生き甲斐を感じられる場所、世界が広がる場所、収入を得られる場所、落ち着いて生活できる場所・・・ など。これも健常者でも同じである。

4.1.2.1 囲碁を通した新たな人たちや世界との出会い

夫は自分では行動範囲が減ったことを自覚せず、広げようという気もない(そのことへの疑問や要求がない)ので、私だけ悶々としていたところに、たまたま囲碁をする人から誘いがあり、これ幸いと囲碁と障害者の集まりに出かけることにした。そこに月1回のペースで通ううちに知り合いも増え、夫も笑顔でいる時間が増えた。しかも囲碁は頭を使うので良いし、新しい人たちとの付き合いで夫も神妙にしていることで感情失禁の場面がそこでは皆無となった。特に囲碁の会を主宰してくれた木谷正道さん(お父様が昭和の名棋士木谷實さん)への夫の尊敬や好きな気持ちが強いので、この会や会で知り合う人たちを通して世界が広がった。

囲碁が高次脳機能障害症状の改善に役立つのでは?という気がしてきて、それを何度か発表したこともある。囲碁に限らず、将棋でも麻雀でもスポーツでも何でも、障害の有無、年齢や男女に関係なく気軽に集まれる場があると良いと考える(図15)。

図15 囲碁を始めた

4.1.2.2 改善してきた症状

遂行機能障害については、仕事をしているので、効率が重んじられるから自分でも反省、気づくようになり、効率的な動きを考えるようになった。 記憶障害については、覚えていられることも増えてきた気がするけれど、そう思って喜んでいると、やはり直前のことをすっかり忘れている場に遭遇し、落胆することはままにしてある。

障害を負ってから20年、介護者である家族も慣れてきたせいもあるが、当事者も段々に色々な症状が落ち着いてきて、比較的安定して生活している。障害を負ったばかりのころは当事者、介護者ともに大変だったけれど、やはりこの障害は時間とともに、そして環境が整うと改善してくるものなのだろう、と家族としては思っている。

4.2 介護者には支えを

4.2.1 介護者の妻が直面した問題

退院後すぐは、何をしたらいいかわからない・すべき手続きがいっぱいで把握しきれない・体力時間情報不足・20年前当時は情報が少なく、周りに同じ人も見当たらず、孤立感に陥る・鬱状態・大黒柱が倒れたので経済的困難 など。時間が経過するにつれ大きくなってきた問題は以下である。

4.2.1.1 周囲の無理解による孤独

勇気を出して友達に悩みを打ち明けても、この障害のことを知っている人は皆無で、全然理解されなくて余計孤独になった。そして理解してくれない友達らに絶望、怒りを覚えて、死んだらどれだけ私が辛かったかわかってくれるかもしれない、というだけの理由で自殺したくなる(母に上手に止められた)。夫の母親(父親は既に他界)の無理解と確執に疲弊、2年間接触を絶つことを決意し、どうにか精神を安定させることができた。2年後、心にゆとりができた私は義母と和解。関係がうまくいっていない相手とある期間離れることは間違っていなかったことを確認した。

4.2.1.2 経済的困難

働き盛りの大黒柱を突然失うことによる、経済的困難(子ども小さかったので教育費や、買ったばかりの家の住宅ローン、生活費がかかる)を抱えながらも、夫の世話があるので働けない。夫は家計には無関心、というかわからないようだ(元銀行員なのに、金銭については子どものように全くわからなく判断できなくなってしまった)。

4.2.1.3 疲弊

孤独な上に20年前は情報が乏しく、その収集や諸々の手続き、夫の社会復帰のために奔走することで心身疲弊。今は各地に家族会があり、ネットではブログほか情報豊富で当時より状況はましになった(図16)。

図16 孤独と疲弊

4.2.2 必要な支援とは

介護者の孤立と疲労は深刻で大きな問題ゆえ、介護者支援(ケアラー支援)はとても大事。介護者が元気になれば、介護者が当事者をより支えられるようになる。具体的には以下のようなこと。

4.2.2.1 ネットの情報

国立障害者リハビリテーションセンターの HP には、各地の支援機関や家族会、イベント等の情報が満載なので、この HP のことをもっと当事者と家族に知ってもらう。情報を持っていること、人と繋がることにより、家族は随分助けられる(図17)。

図17 ネットで情報収集

4.2.2.2 ネット以外の情報

全ての当事者・家族がネットを使えているわけではないので、誰もが見たり読んだりするテレビや新聞などでこの障害のことをもっと取り上げて、自分の障害を気づかせ行動してもらう。また、当事者や家族でない一般の人にもこの障害のことを広く知ってもらう。 最低、市区町村レベルの役所にはこの障害のパンフレット等を置いておく。

4.2.2.3 生活の場での理解と支援

地域、職場、学校など当事者と家族が生活する場でのこの障害への理解と支援を広げる。

4.2.2.4 繋がりを持たせる

当事者や家族は孤立し1人で悩みや問題を抱えがちなので、同じ障害仲間や支援職(行政・医療・福祉・学校ほか)と繋がれるようサポートや情報供与する。

4.3 その他

気になることとして、受障20年経ち63歳になり、さらに忘れっぽさや勘違いが増えてきた気がする。主治医に聞いたところ、脳を損傷しているので、普通の人より認知機能は衰えるのが早く、それは仕方ないとのこと。

また、何か体に異常があっても、「高次脳機能障害のせいだから。」、「脳梗塞起こしたせいだから。」、と勝手に思いこむと、重篤なほかの病気を見逃すことがあるので注意が必要。

当事者によって症状は様々。最近は当事者自身が発信されることも増えてきた。1つ危惧するのは、精力的に発言され、自身の甚大な努力でなんとか1人で生きていらっしゃる軽度当事者の方を見て、高次脳機能障害者とはこういう人だ、助けなくても大丈夫そうだ、と思われると、支援の手が止まってしまうのでは、ということ。 世の中には軽度から重度まで、色々な高次脳機能障害者がいることを理解してほしい。そしてどの程度の当事者も、皆同じく苦労しているということを。

まとめ

高次脳機能障害者は今後も、脳卒中や交通事故などによる後遺障害としてなくなることはなく、その数も数十万人と少なくないにもかかわらず、いまだに社会に周知されているとはいえず、支援や理解が不足している。障害当事者のみならず、支える家族の苦悩は大きく、今後より一層の支援と理解が求められる。特に後回しにされがちな介護者への支援を望む。

けれど最後に申し上げたいのは、高次脳機能障害は良くなっていく障害だということ。20年前に比べれば夫はずっとしっかりしてきたし、諸症状も改善に向かっている。時間の経過と周りの環境調整、支援によりこの障害は改善し、本人も介護者も楽に、幸せになっていく。だから本人も介護者も諦めることなくこれからも社会に理解と支援を訴えていくこと、社会が変わっていくことが必要と考える。それが結局は社会全体の幸せにつながると思うから(図18)。

図18 前へ向かって歩いていこう!

参考

1. 障害者就業・生活支援センター

障害者就業・生活支援センターは、障害者の職業生活における自立を図るため、雇用、保健、福祉、教育等の関係機関との連携の下、障害者の身近な地域において就業面及び生活面における一体的な支援を行い、障害者の雇用の促進及び安定を図ることを目的として、全国に設置されている。

https://www.mhlw.go.jp/stf/newpage_18012.html

2. 東京障害者職業センター

東京障害者職業センターでは、障害者職業カウンセラー等を配置し、ハローワーク(公共職業安定所)、障害者就業・生活支援センターとの密接な連携のもと、就職や職場定着、職場復帰を目指す障害のある方、障害者雇用を検討している或いは雇用している事業主の方、障害のある方の就労を支援する関係機関の方に対して、支援・サービスを提供している。

https://www.jeed.go.jp/location/chiiki/tokyo/

3. 障害者職業総合センター

障害者職業総合センターは「障害者の雇用の促進等に関する法律」に基づき設置されており、広域・地域障害者職業センターの運営、職業リハビリテーションに関する研究、技法の開発及びその成果の普及等を行っている。

https://www.nivr.jeed.go.jp/organization/index.html

4. 高次脳機能障害支援モデル事業

  厚生労働省では、高次脳機能障害者が医療・福祉サービスを適切かつ円滑に受けられるようにするために、平成 13年度から 17年度までの5か年間、国立障害者リハビリテーションセンターと 12地域の地方自治体による高次脳機能障害支援モデル事業を実施した。モデル事業では、医療・福祉サービスを提供するための対象者を明確にするための「高次脳機能障害診断基準」が作成された。また、モデル事業に参画した各自治体に支援拠点機関と支援コーディネーターが配置され、高次脳機能障害者の医療から福祉への円滑な移行、望ましい社会復帰を図る実践が行われた。このモデル事業は、さらに全国展開を目指して、平成 18年10月から、障害者自立支援法(現在の障害者総合支援法)に基づく地域生活支援事業の1つである「高次脳機能障害支援普及事業」(現在の「高次脳機能障害及びその関連障害に対する支援普及事業」)に引き継がれた。

https://www.fukushi.metro.tokyo.lg.jp/documents/d/fukushi/2022handbook-7shou

5. ハローワーク

ハローワーク(公共職業安定所)は、仕事をお探しの方や求人事業主の方に対してさまざまなサービスを無償で提供する、国(厚生労働省)が運営する総合的雇用サービス機関。

https://www.mhlw.go.jp/stf/seisakunitsuite/bunya/koyou_roudou/koyou/hellowork.html

6. ヘルプマーク

義足や人工関節を使用している方、内部障害や難病の方、または妊娠初期の方など、外見からは分からなくても援助や配慮を必要としている方々が、周囲の方に配慮を必要としていることを知らせることで、援助を得やすくなるよう、作成したマーク。

https://www.fukushi.metro.tokyo.lg.jp/shougai/shougai_shisaku/helpmark

7. 国立障害者リハビリテーションセンター

障害のある人々の自立した生活と社会参加を支援するため、医療・福祉サービスの提供、新しい技術や機器の開発、国の政策に資する研究、専門職の人材育成、障害に関する国際協力などを実施している国の組織。

・高次脳機能障害情報・支援センターHP https://www.rehab.go.jp/brain_fukyu/

8. 木谷實

https://www.nihonkiin.or.jp/player/htm/ki001060.htm

囲碁棋士(1909~1975)。九段。昭和8年に呉清源と新布石法を発表、実践し碁界に大きな変革をもたらした。自宅を木谷道場として内弟子をとり多くの棋士を育てる。タイトルを争うトップ棋士から普及に専念する地方棋士まで、木谷一門は現代の碁界を支える支柱となっている(日本棋院HPより)。

9. ここに使われているイラストは全て、柴本礼『日々コウジ中』(主婦の友社)からの抜粋か、著者柴本礼によるもの。

 
© 2025 Cognitive Rehabilitation Society

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