My feelings upon diagnosis of dementia

I was unexpectedly diagnosed with dementia and not prepared to face it. My brain froze, I couldn’t think of anything, and I couldn’t ask any questions to the doctor. I was desperate and went home.

After a while I purchased some books on Alzheimer’s disease at a bookstore and studied. According to the books, I was supposed to become unable to memorize, to forget everything, and unable to recognize myself. The more knowledge I obtained, the more negative information I was exposed to, and I lost the will to live.

My current feelings

1. Having dementia is inconvenient, but not unhappy.

2. Don’t give up your life or lose hope. Find pleasure.

3. Although there are things you can’t do, realize there are many things you can do as well.

4. Having dementia doesn’t deteriorate one’s value as a person. Recognize you are worthy of living just as you have so far.

5. Don’t fret about what you can’t do; believe you are a valuable being. Be proud of yourself. Have self-esteem.

6. Don’t judge the value of a person by their productivity such as they can do this or that. Admit value in living itself.

7. Think about how to deal with a problem when you encounter one. Don’t worry unnecessarily.

8. Live and let live. Live your own life without comparing it with that of another.

9. Honestly admit there are things you can’t do and ask someone for help. Live for the moment.

10. Live your life by appreciating your remaining functions, instead of counting and crying over the functions you have lost.

11. Accept everything in a positive manner. Trust that the future is bright. Live by believing in your ability.

12. Don’t fall into a vicious cycle, and think about something fun. Trust that if one way is closed, there is another new way opened.

13. Get to know energetic people with dementia, and receive energy from them.

14. Whatever will be, will be. Don’t think negatively; live positively.

15. You live only once. Live life without regrets.

16. Use your money for meaningful things; enjoy your life.

17. Dress up sometimes, go into town, and enjoy your life.

18. Don’t forget to have courage to challenge new things.

19. Try to improve yourself. Make efforts to achieve goals.

20. Make achievable plans and feel a sense of fulfillment by achieving them.

21. I could open up a new life by meeting various kinds of people after being diagnosed with dementia.

22. Think about various things and write about them to avoid disuse syndrome as a result of doing nothing and being dazed.

23. Life is not bad. Even negative aspects can be positive from a different perspective.

24. There are avenues to success everywhere in life. Don’t become desperate, because you will find another happiness.

25. Life is not bad, because there are new encounters. Value the encounters.

26. If you give up, you will never make it. Try everything believing you can make it, even if you may take much more time than others. 

27. Mistakes are steppingstones to success. Keep trying.

28. Don’t be afraid of making mistakes, and challenge things. Life is a series of new challenges.

29. Don’t set your limits. Make tenacious efforts without giving up.

30. As everything has its own time, it is also necessary to wait for the appropriate time. Never hurry.

how to  a  life.

1. Live and let live. Live your own life without comparing it with that of another.  

2. Be satisfied with what you have; don't ask for too much.

3. Live everyday with thankfulness. Don’t wish for what you can’t have.

4. Live everyday for the blessing and miracle of life.

5. Try to improve yourself. Have confidence in yourself! You are a valuable being.

6. Don't complain, but instead take the actions necessary to overcome or eliminate the cause of your complaints.  

7. Life may not always go as you've planned, but appreciate life as it is and appreciate it more when things go well. 

8. Make achievable plans and feel a sense of fulfillment by achieving them.

9. Good health makes us feel happy. Keep yourself healthy. 

10. No matter what happens, don’t abandon hope. Believe there is always a way out from any ordeal.

11. No matter what happens, don’t become desperate because God has His plan beyond your understanding.

12. Live your life by appreciating your remaining functions, instead of counting the functions you have lost. 

原文いかに生きるか

"1 自分は自分、人と比べない生活をする。

2 持っているもので満足する。高望みはしない。

3 毎日感謝して生きる。無い物ねだりはしない。

4 平凡に暮らせる事は奇跡だと思って生活する。

5 向上心を忘れない。自分を自分で尊い存在だと思い、自分に自信を持つ。

6 不平不満をいわない。不満があったら、自ら行動して、不満を無くす。

７ 思い通りにいかないのが人生だと思い生活する。上手く行ったら感謝する。

8 実現可能な目標をたてて、充実感を味わう。

9 健康に暮らせるだけで、幸せだと感じる。

10 何があっても、希望を捨てない。試練には必ず脱出の道があると信じる。

11私にはわからないが、神様のご計画があるので、どんな事があっても自暴自棄にならない。

12 失った機能を数えるのではなく、残された機能に感謝していきる。"

Guidelines for my life

1 Turn a blind eye to what I can’t do, and pay attention to what I can do

2 Believe in the infinite possibilities of my life

3 Live my own life, without comparing with lives of others

4 Delegate things I can’t do to others

5 Spend money for useful things. I don’t just save money

6 Spend my time for other people

7 Believe in decisions I made after thinking them through

8 Take responsibility for things I decided on myself

9 Do not complain about things I delegated

10 Be happy with what I have; don’t envy others

11 God has plans that I don’t have. Do not lose hope at any time

12 Believe that there’s a way out for any challenge

13 Take risks and act

14 Do not regret things that have taken place. Make sure it will never happen again

15 Keep up a desire to improve myself

16 Don’t be hasty. There’s a good timing for everything

17 After doing my best, wait for results to arrive with a peace of mind

18 Live with feelings of gratitude

19 Spend much time loving others

20 Delegate things others can do, and do what only I can do

21 Live a pressure-free life

22 Enjoy life even in times of hardship

23 Do not give into hardship. Life is full of hardships

24 Do not lose hope, as chances arrive from unexpected places

25 Do not forget that, despite the lack of abilities on certain things I remain a respectable human being.

26 Get my priorities straight

To live a fulfilling life

1 Do not compare with others

2 Do not envy

3 Be happy with what I have

4 Do not wish for something I can’t get

5 Turn a blind eye to what I can’t do and delegate it to others

6 Make small goals and cherish my accomplishments

7 Find things I like and enjoy them

8 Always be thankful

9 Affirm my presence. I am a precious human being

10 Have a friend I can confide in and enjoy the conversation

11 Have a desire to improve myself

12 Pay attention to my health

13 Don’t be hasty as there’s a good timing for everything

14 Do not despair for my mistakes

15 Be aware of my limit and act

16 Believe that I have infinite possibilities

17 I believe in my ability to carry out things I like

18 Do not get bogged down in trivial details

19 Delegate to others what they can do for you

20 Live with moderate feelings of tension

21 My life is filled with basic clothing, eating and living needs

My Message

Masahiko Satoh   Deputy Leader of Japan Dementia Working Group

The meaning of hardships is beyond human understanding, but God has His holy plan. So, don’t surrender to hardships; live your life with hope. There is no need to worry as there is always a way out for any ordeal.

Although it has been 13 years since I was diagnosed with dementia, I am doing well.

1. Everything has its own time. Do everything you can think of, and let God do the rest. Don’t flounder around and leave things to take their own course.

2. Think cautiously and make a decision. Once decided, believe that it is the best way and don’t have regrets.

3. If you have anything to worry, consult with someone you can rely on. Don’t try to handle everything by yourself.

4. Assume responsibility for your decisions. Don’t blame others. Don’t make a fuss.

5. Don’t regret what you didn’t do. Give it a try and let God do the rest.

6. Don’t think about reasons why you can’t make it. Just think about ways to make it. 

7. Don’t make any excuse for anything. Just do your best.

8. Think about everything in a positive manner.

9. Trust in your ability.

10. Modestly accept that there are things beyond your control.

11. Don’t bother yourself with trivial things.

12. Don’t be obsessed with one particular idea. If you get stuck, change your way of thinking, and search for another way.

13. Don’t become near-sighted.

14. Do things that you like, believing that you can make it.

15. Accept that there are things you can’t do and let others take care of them.

16. Don’t be lazy. Take the initiative to do things that you can do.

17. Make efforts to change things that you can change and accept things that you can’t change.

18. When you are confronted with an ordeal don’t ask why, but pray for learning something from the ordeal.

19. Believe that there is always a way out for any ordeal.

20. Don’t compare your life with others. Live your own life.

21. Live your life appreciating that God lets you live.

22. Don’t take your life for granted, but consider it as a miracle.

23. Live your life in thankfulness.

24. Regard yourself as a valuable being even if you can’t do anything.

25. Develop a love for yourself. Love yourself as you love others.

26. Do to others as you would have them do to you.

27. Even if you feel useless accept it unreservedly as it is yourself.

Japan Dementia Working Group Co-leader Masahiko Sato

1) Look at everything positively, not negatively.

When you have trouble sleeping at night, don’t take it negatively. Take it positively, thinking that you have more time for activity.

2) Do not utter negative words.

If you keep saying things like “I’m tired,” “I don’t feel like doing anything,” and “I can’t do it,” you will feel that way. Don’t say anything negative.

3) Do not underestimate yourself.

Your expectations will drop and you will become unable to achieve things that you actually have the ability to achieve.

4) I’m a valuable, honorable being.

Do not compare yourself with others. Even if you can’t do certain things, think you are honorable.

5) Love yourself. Like yourself.

It’s you who you have to deal with all the time. You will be miserable if you can’t love yourself. If you can’t love yourself you can’t love any others.

6) Enjoy life.

Find fun things and live a rich life, or you will not feel happy.

If you have fun your life will become richer.

7) Do not wish for things you can’t have.

You won’t become happy if you are always complaining. Be happy with what you have, and you will feel happy.

8) If you spend your time doing things you like to do, your cognitive functions will be maintained.

My cognitive functions improved after I participated in clinical painting sessions and painted, which I like.

9) If you are tired, rest. Do not overwork yourself.

10) Having dementia is inconvenient but not unhappy.

11) Inconveniences can be overcome by creativity and innovation.

12) Believe that your potential has no limits. Do not put a limit on your own potential. Once you place a limit, you will lose the ability to do what you thought you could do.

13) Have confidence in yourself. Others’ judgment on you is not reliable. If you are influenced by the opinions of others, you lose yourself. Regard the views of other people just as a reference.

14) Live your own life. Live a life that’s not someone else’s. Someone else has his or her own life. You have your own life.

15) Be thankful for everything. Be thankful for living the ordinary everyday life.

16) Accept what you can’t do and ask others to do it for you. If you delegate to others, be tolerant about their work to a certain degree.

17) I want to contribute to society through volunteer activities. People with dementia are not a burden in society.

18) Believe in your ability to achieve what you plan to do. Be aware it might take several times longer than others. Pursue it believing that you will definitely achieve it.

19) Turn your attention to what you can do, not what you cannot do.

20) Accept the dementia diagnosis, however unreasonable it is.

21) Having dementia does not mean you lose the ability to do everything at once.

22) No matter how difficult it is, you live with hope, believing that there is a way out.

23) Create a list of “Things I can do,” carry out what you have written in the list and live a fulfilling life. I can write out my messages and tell them to people.

24) When you encounter a challenge, do not lament over why you are faced with the challenge, but pray what you should learn from it.

25) Do not lament over the functions you lost, but be thankful for the functions you have left.

26) Even if you lose your memory, your record will stay.

27) Have a dream. Involve others to achieve your dream.

28) Do not infringe on other people’s life.

29) It’s easier to do something than worrying about it. See how it goes. Do not worry too much.

30) Have a goal in life.

I created 100 messages I want to tell. E-mail me if you are interested.

Summary

Be positive about everything. Life with dementia comes with inconveniences, but not unhappiness. There’s a way out for every difficulty. Live with hope.

生きて行く上で大切なこと

Important things in life

1  出来ない事に目を向けるのではなく、できる事に目を向けて生きる

To focus on what you can do, not what you cannot do

2  自分には無限の可能性があると信じること

To believe that you have unlimited possibilities

3   変えれることは、変える努力をして、変えられないことは、受け入れること

To do your best on what you can do, while accepting what you cannot do

4   出来ないことは、出来ないと割り切り、人に委ねること

To give up on things you cannot do and ask others to do them

5   いつも希望を持つこと

To hold onto your hope

6    試練にあったら、なぜこんな試練に合うのですかと不満を言うのでなく、この試練から 何を学ぶのですかと祈ること

When you are faced with a challenge, you pray and ask what you can learn from this, in front of griping what you are faced with that challenge

7    向上心を失わないこと

Not to give up on improving

8   自分の使命を考えて、行動すること

To think what your mission is and act in accordance with it

9   新しい事に挑戦する勇気を、いつも持つこと

To keep up the courage to challenge new things

10   疲れたら、休む事  無理は禁物

To rest when you are tired. Don’t strain yourself

11    不平、不満を言わなく、みずから行動すること

Show with your action, not with gripes or complaints

12    生かされていることに感謝すること

To be thankful that you are alive

１３　　人のためにいきること（社会に貢献すること）

To live for others (to contribute to society)

１４　　人を愛すること

To love people

１５　　自分で自分のことを尊い存在だと思うこと

To think you are a precious being

いかに生きるか

How to live

・自分は価値ある世界で一人の人間だと思い、他人と比較することなく自分の人生をいきる。

To think you are the one and only precious person and live a life of yours without compared with lives of others

・失敗したことはすぐに忘れて、負の感情をひきずらない。

To forget what you have erred, not to be dragged down by negative feelings

・自分で自分の能力を低く見積もらない

Not to underestimate your abilities

・すきなことは、できると信じておこなう。

To carry out things you like, believing that you can achieve them

・寂しい、悲しいと負の感情におそわれたら、注意をほかのものにむける。例えば音楽を聴く

When hit by negative feelings, such as  loneliness or sadness, turn your attention to other things - such as listening to music

・今日出来なくとも、いつかできると信じる。

To believe that, if you can’t do it today, you can do it sometime

・失敗しても、なんどでも挑戦する。

To try to accomplish something many times even if you have failed to do so

・何事にも興味をもつ

To become interesting in everything

・初めか出来ないと、諦めない。

Not to give up even if you fail to achieve it in your first try

・何事もポジティブに考える。

To think everything positively

10

・失敗は成功の元。失敗にめげない。

Failures make a success. Do not give up.

・悲観的に考えない。人に希望を届ける人生を歩む。

Do not feel pessimistic and live a life giving hope to other people.

・試練には、必ず脱出の道があると信じる。

To believe that there should be a way out of difficulties

・いつも希望を持つ。

To keep up your hope

・認知症になっても、できなくなること増えるができることもたくさんある

When you have dementia, there are many things you grow unable to do. But there are also many things you can do.

・借り物ではなく、自分の人生を生きる

To live a life of your own, not a life of someone else

・生きるには苦難はつきものだと思う

To realize that life comes with difficulties

・試練によって、人格が成長すると考える。

To think that challenges help you grow as a person

・試練により人間性がます。失敗しても、悔いのない人生を送る。

To think that your humanity grows with challenges. To live a life without regrets, even if you make a mistake

・リスクを覚悟（おかしても）に、悔いのない人生をおくる。

To live a life without regrets, even if that comes with risks

20．

・出来ないことは、人に委ねる。

To ask others to do things you cannot do yourself

・無い物ねだりをしない。

Not to wish for something you can’t have

・現状に満足する。

To be content with the way it is

・大きな負担にならない程度に頑張る。

To work hard without overburdening yourself

・何事も、できると信じて行う。

To believe that you can get anything done

・縁の下の力として、栄光をもとめない。

To help others without asking for credit; don’t live for a glory

・毎日、生かされていることに感謝して生きる。

To be thankful that you are alive everybody

・同じ失敗をしない。

Not to make the same mistakes

・何事も、前向きに考える。

To think positively about everything

・いつまでも、くよくよしない。

Not to fret

30

・負の感情が起ったら別のことに注意を向ける。

To turn your attention away if negative feelings try to control you

・いきずまったら、人のために生きることを考える。

To think of living for others when you run up against a wall

・どんな時にも、希望を捨てない。

Never to give up hope

・いまに、きっといい事があると信じる。

To believe that good things will happen soon

・人の意見は参考程度に考える。

To take the opinions of others in stride

・人の人生に土足で踏み入らない。

Not to intrude on other people’s lives

・自分の行動には、責任を持つ。

To take responsibility for your actions

・決断力した事に、くよくよしない。最善の道だと信じる。

To never question your own decision. Believe that your decision is the best way forward

・自分の決断には、責任を持ち、人のせいにしない。

To take responsibility for your decisions and not to blame others for them

・負の感情が起こったら、楽しい事に注意を向ける。

To focus on something fun when you are hit by negative feelings

40

・案ずるより、うむがやすし。なりゆきにまかせる。

It’s easier to do something than worrying about it. See what happens

・とりこり苦労はしない。

Not to worry too much in advance

・悪い事が起こったら必ず良いことも起こると信じる。

To think that a bad event is always followed by something good

・何事も、言語にして、考えをまとめる。

To turn your thoughts into words

・無用な心配はしない。なったらなった時。

Not to worry too much. When it happens, it happens

・負のスパイラルに陥らない。

Not to fall into a spiral of negativity

・悲劇の主人公にならない。

Not to make yourself a tragic hero

・いきずまった、視点，発想をかえる。

Change your perspective and mindset when you run up against a wall

・ちいさなことに、くよくよしない。

Not to fret over small things

希望と尊厳のある暮らし

A life with hope and dignity

For me, a life with hope and dignity means

a life where I can satisfy my clothing, housing and living needs,

don’t have to worry excessively about future,

where I can get my wishes heard, if not met,

have people to talk to when I feel lonely or worried,

have a role to play,

have something to look forward to in daily life,

can spend a fulfilling time painting works as part of clinical art,

have the freedom to eat out, watch movies or visit museums,

have the freedom to take a walk when I like,

have a place to talk with other people with dementia,

where I’m not ignored and can have my stories heard,

can go traveling sometimes,

can receive support for using convenient devices, such as PCs and iPads,

have the freedom to go out,

can do what I want to do, such as appearing on TV,

can live positively with hope,

can receive the support of an escort when I attend various events or meetings,

can do what l like do when I want to,

can be treated as a precious being even if I can’t do anything special,

can eat what I like at times,

can occasionally buy and read interesting books without reservations,

can receive adequate health care,

can receive adequate nursing care,

where I have the mental and physical strength to do something,

can think of ways to enjoy life no matter how tough my challenges (hardships) are,

where what kind of life it is, I and we deserve a life with dignity.

Let’s think about your own life with hope and dignity.

認知症当事者にとって住みよい社会とは

A society that is friendly to people with dementia

- A society in which people ask you if there’s anything they can do, such as when you are lost for directions

- A mature society where nobody complains to you at the cashier for taking time to make the payment

- A society where people can make a living doing what they love, even if you are slow at work

- A society where people treat you equally, instead of looking down on you, and where they enjoy things together with you

- A society that tolerates your mistakes

- A slow-life society where people can live slowly and are not required to put efficiency first

- A society not dictated by the law of the jungle, a society that is friendly to the vulnerable

- A diverse society that respects various different values

- A humane society where people with disabilities and vulnerabilities are not discriminated against

- A gentle society where people can imagine what others feel

- A kind society where people give up their seats for others

- A gentle society where people don’t claim rights or make arguments for themselves only, but where people can understand the position of others

- A society where people help each other by giving and cooperating, thinking that everyone should do so when times are tough

- A society where vulnerable members of society are given a role to play and can shine

Let’s think of a society that is friendly to you, and let’s work together create a society that is friendly to people who get dementia.

Masahiko Sato, Representative of Japan Dementia Working Group

Born in Gifu Prefecture, Japan, in 1954, I graduated Meijo University in Nagoya with a degree in Science and Technology. After teaching mathematics at a secondary school, I moved on to become a system engineer in a private computer company. 

When I was 32 years old, I fell ill, just when I was in what seemed to be the busiest period of my life. I had bought my own apartment and was a chairman of the board of directors for the community which housed 133 households. I had to take a temporary leave of absence from work, followed by a career setback after being transferred to a clerical position that did not match my skills. Having lost motivation in my job, I began to attend church services and became a Christian when I was 39. 

At the age of 45, I was no longer able to take meeting minutes at work. Due to my impaired memory, I had to take a two-year leave from work. I did resume work, but the company decided that I was no longer able to do clerical work and I was transferred to delivery service. For about two years, I could fulfill my delivery tasks without any problems, but gradually I began to lose confidence in my ability to deliver packages to the right place. I even had trouble finding my way back to my car for half an hour when I took the wrong exit at the Tokyo Metropolitan Government Headquarters. 

It was when I was 51 that I was diagnosed with Alzheimer’s type of dementia after consulting a psychiatrist, and taking a CT scan and identifying signs of atrophy in my brain. All they gave me was a diagnosis that I had dementia, but nothing at all about what this disease was all about. Shocked with the diagnosis, my mind went blank. I felt totally lost and went home in a daze. Shocked by the diagnosis, I no longer had the energy to continue my job, and after a three-month absence, I retired from work. 

A little after my diagnosis, I started purchasing books about Alzheimer’s disease at bookshops, and tried to find out about the disease. The information I read said that I would eventually be confined at home, unable to make my own judgements, and in many cases, within six to ten years, I would need to be under full nursing care. The more I learned about the disease, the more I felt my energy and hope in life drain away. Every day became an agony to live, and I could no longer live on my own, and so I returned to my hometown in Gifu. I spent 50 days or so in my hometown, during which I gradually began to gain strength. I once again returned to Saitama, and it was from then on that I began to focus on what I can do, rather than on what I can’t do. 

I became aware of two prejudices in my life with dementia. One is the prejudice I had within me. I had the biased view that once you had dementia, you wouldn’t know anything. In the beginning, I took this at face value, and believed that I would no longer be able to do anything, which caused me to believe my life was without meaning, and I gradually became unable to do things for myself. The other is the prejudice in society. People see people with dementia as having no memory, think they can no longer make judgements for themselves, and thus no longer treated you as mature individuals. People with dementia must lead a life with this dual prejudice.  

Masahiko Sato, Representative of Japan Dementia Working Group

Born in Gifu Prefecture, Japan, in 1954, I graduated Meijo University in Nagoya with a degree in Science and Technology. After teaching mathematics at a secondary school, I moved on to become a system engineer in a private computer company. 

When I was 32 years old, I fell ill, just when I was in what seemed to be the busiest period of my life. I had bought my own apartment and was a chairman of the board of directors for the community which housed 133 households. I had to take a temporary leave of absence from work, followed by a career setback after being transferred to a clerical position that did not match my skills. Having lost motivation in my job, I began to attend church services and became a Christian when I was 39. 

At the age of 45, I was no longer able to take meeting minutes at work. Due to my impaired memory, I had to take a two-year leave from work. I did resume work, but the company decided that I was no longer able to do clerical work and I was transferred to delivery service. For about two years, I could fulfill my delivery tasks without any problems, but gradually I began to lose confidence in my ability to deliver packages to the right place. I even had trouble finding my way back to my car for half an hour when I took the wrong exit at the Tokyo Metropolitan Government Headquarters. 

It was when I was 51 that I was diagnosed with Alzheimer’s type of dementia after consulting a psychiatrist, and taking a CT scan and identifying signs of atrophy in my brain. All they gave me was a diagnosis that I had dementia, but nothing at all about what this disease was all about. Shocked with the diagnosis, my mind went blank. I felt totally lost and went home in a daze. Shocked by the diagnosis, I no longer had the energy to continue my job, and after a three-month absence, I retired from work. 

A little after my diagnosis, I started purchasing books about Alzheimer’s disease at bookshops, and tried to find out about the disease. The information I read said that I would eventually be confined at home, unable to make my own judgements, and in many cases, within six to ten years, I would need to be under full nursing care. The more I learned about the disease, the more I felt my energy and hope in life drain away. Every day became an agony to live, and I could no longer live on my own, and so I returned to my hometown in Gifu. I spent 50 days or so in my hometown, during which I gradually began to gain strength. I once again returned to Saitama, and it was from then on that I began to focus on what I can do, rather than on what I can’t do. 

I became aware of two prejudices in my life with dementia. One is the prejudice I had within me. I had the biased view that once you had dementia, you wouldn’t know anything. In the beginning, I took this at face value, and believed that I would no longer be able to do anything, which caused me to believe my life was without meaning, and I gradually became unable to do things for myself. The other is the prejudice in society. People see people with dementia as having no memory, think they can no longer make judgements for themselves, and thus no longer treated you as mature individuals. People with dementia must lead a life with this dual prejudice.  

伝えたいこと

What I Want to Share with You

-A Message of a Person with Dementia-

Masahiko Sato

Representative, Forum for People Affected by Dementia

1. Diagnosis and Now

I am 61 years old now. I graduated from a university with a degree in engineering. After teaching mathematics at a middle high school for a short time, I got employed at a computer retail company, changing my career to be a system engineer. Around 1999, I started having problems with writing down the minutes of meeting at work. I could not memorize model numbers and quantities of computer goods, and I noticed that I would spend much longer time to input information. So I took a sick leave for some time, and returned to the workplace as a delivery man. Then I started to leave behind carts at delivery sites, while spending as long as 30 minutes looking for my car. Eventually, I made an appointment with a clinical psychiatrist. The doctor took my CT scan, and atrophy was found in my brain. I was diagnosed with Alzheimer’s disease.

I live by myself now, with a support of a home helper who visits me twice a week. What I like most is to appreciate the flowers blooming at the dike of Arakawa River. It really makes me feel that “I am alive.”

1. I Make My Own Life

    

   I experience so many troubles and inconveniences in my daily life, due to my dementia. I developed my own tactics to cope with them. Below are some of the examples.

    

• I wake up in the morning and check the date, the day of the week, and the schedule of the day.

• I input the information of what I did on the day into my computer, once in the morning, and again in the afternoon. Otherwise, I would forget what I did.

• I use emails, not telephones, to confirm when and where to meet people, so that I can check the information again and again by reading emails.

• I use an alarm clock function and a personal calendar application in my mobile phone, to remember to take my prescription drugs.

• When I go shopping, I bring my list of “things to buy” and “things never to buy.”

• When I turn on fire in my kitchen, I will never do anything else, so as not to forget that fire is on.

• I upload my daily events to Facebook so as to keep my connection with society.

There are many things a person with dementia cannot do. However, there are still many other things that such a person can do. Many functions remain with the person. The condition of what are able and what remain differ much, depending on the person. In my case, I make use of computer and mobile phone in my daily life. These are indispensable tools that compensate for my memory loss.

1. How I Wish a Society to Be

    

   Living with dementia, I came to know that there are two stigmas. I found one inside of myself. It is a prejudice (or stigma) that says “I would not be able to do anything.” There were times when I thought that I could be paralyzed by the fear of failing that says “I would keep on failing.” The other stigma exists in society. It says that “I cannot think anymore. I cannot understand anymore.” These stigmas are two-fold, taking away my power of living and obscuring my hope for living my life with dementia.

    

   I have several wishes to be granted by people in communities and in society.

• Do not get at mistakes of us the people with dementia. Do not make fun of them, nor laugh about them.

• Do not regard us as worthless, valueless existence.

• People should be able to wait patiently when we get muddled at supermarket or information desk of train stations. That is what I think an ideal society should be.

• We the people with dementia can go out when we feel like and do what we want to do. That is what I think an ideal town should be.

• We want to be respected as a member of society to which we also contribute to create. Do not look at us as a burden of society or an object of care.

   

It is true that we have more inconveniences living with dementia, but it never means that is an unhappy thing. Given that we have about 4.5 million people with dementia (in Japan), I encourage you to think hard how these people can live their lives more positively with hope. I would ask you to give us your small help to each one of us.

1. How I Overcame My Hardship

    

   When I started to think low of myself, I hummed the following verse of Bible. Then I felt that God said this insignificant me is precious. I kept on telling myself that I am worthy, and overcame hardships.

    

“Since you are precious and honored in my sight and because I love you.” (Isaiah 43:4)

Another verse that helped me overcoming challenges is,

“There hath no temptation taken hold of you but such as is common to man. But God is faithful; He will not suffer you to be tempted beyond that which ye are able to bear, but with the temptation will also make a way to escape, that ye may be able to bear it.” (1 Corinthians 10:13)

認知症とともに歩む人たちへ　　　　

To All Those Living With Dementia 

日本認知症ワーキングクループ共同代表　佐藤雅彦

Co-Representative of Japan Dementia Working Group  

Masahiko Sato

• 認知症になったら、人生終わりではない、残された機能に感謝して、素晴らしい人生が待っていると信じて精一杯生きる。

• It’s not the end of the world when you get dementia. Be grateful for what still works – and go on believing that you have a wonderful life to lead.

   

• なにもできないとなげくのではなく、いまできることリストを書き出し、それを実行する。そうすると、生活に張りが出てくる。

• Don’t dwell on the negatives – list all that you can do now and just do it so that you enjoy an active life.

   

• 必ずできると信じて、ものごとを行う。

• Do things with the belief that you can succeed.

   

• 初めから、やりもせずに、できないとあきらめない。

• You must not give up without giving it a go.

   

• 自分で自分の能力を低くみつもらない。

• Don’t underestimate your abilities.

   

• なにごとにも、挑戦する勇気を失わない。

• Don’t lack courage – give everything a try.

   

• 取り越し苦労をしない。

• Don’t worry about what may never happen.

   

• 自分はダメな人間だと思わない。

• Don’t give in to low self-esteem.

   

• 自分には無限の可能性あると、信じて生きる。

• Live your life to your maximum potential.

• 好きなことを記録して、楽しく過ごす。

• Be happy – and make a note of all your favourite things.

   

• 失敗した記録ばかりとり、負のスパイラルに落ちいらない。

• Don’t go into a downward spiral by dwelling on failures.

   

• 何事にも興味を持つ。（食わず嫌いにならない。）

• Be curious – and show your interest in the world around you.

   

• 人になにかができないかを常にかんがえ、積極的にいきる。

• Live a positive life by always thinking how you can support others.

   

• 幸せでないと思うときは、自分の価値観を疑い、価値観の修正を試みる。

• When you feel low just reconfigure your perspective and try to adjust your outlook.

   

• 自分は、価値のある人間だと思う。

• Develop a sense of your own value and worth.

   

• 自分で自分を好きになる。

• Try to love yourself.

   

• 認知行動療法を勉強して、前向きに生きる。

• Learn and apply CBT methods (Cognitive Behaviour Therapy) to strengthen your wellbeing.

   

• 失敗は成功の基だと思い、少しの失敗にヘコ足らない

• Don’t get upset by small setbacks – they are essential steps on the path to success.

   

• 他人から何がしてもらうと考えずに、他人に何ができるかを考える。

• Ask yourself not what others can do for you – but what you can do for others.

   

• もらうことより、与えることのほうが幸せであると考える。

• Embrace the concept that giving is much better than receiving.

   

• 常に社会にどう貢献できるかかんがえる。

• Always think about how you can contribute to the world around you.

• 自分の使命を常に考える。

• Always keep you mind on your personal mission in life.

   

• できないことばかりに、目を向けるのではなく、できることに目を向けて生きる。

• Live your life positively – do not dwell on what you cannot achieve, focus on what you can do.

   

• 自分に残された能力に感謝して生きる。

• Be thankful for all you can still achieve.

   

• ないものねだりをせずに、現状に満足して生きる。

• Be happy with what you have – do not cry for the moon.

   

• 人生は１度しかない、失敗しても、悔いのない人生をおくる。

• We only have one life – so live it to the full – mistakes and all.

   

• 失敗をおそれずに、いろいろなことにとりくむ。失敗にめげない。

• Be brave – be adventurous – don’t dwell on the possibility of making mistakes.

   

• 試練は、人間の人格を磨くためにあると考える。

• Challenges strengthen the character.

   

• 試練には必ず脱出のみちがあると考える。

• There is always a way out of hardship.

   

• 困難なことは，たまには起こると考え、永遠に続くと考えない。

• Problems will occur – but they will be overcome.

   

• 何事にもくよくよしない。

• Be positive – don’t dwell on the negatives.

   

• いまの苦難は、永遠に続くのではなく、必ず希望があると信じる。

• Today may be difficult – tomorrow is a brand new day – bringing hope.

   

• 「そうはいっても、できない」と否定的に考えず、できる方法があると信じて考える。

• Don’t give in to doubts – be strong – and always believe in the possibility of a solution.

伝えたい事

認知症になっても、できなくなることも多いが、できることもたくさんある

Even though I have dementia, the many things I can no longer do are also accompanied by many things I can do.

認知症になると不便なことが増えるが、決して不幸ではない。

Having dementia has led to more inconveniences, but this does not necessarily mean I am unhappy.

認知症になっても、絶望することなく、生活の仕方の工夫を紹介して、希望を持て生きる。

Even though I have dementia, I have introduced ways to be creative in my lifestyle without giving in to despair and continue living with hope.

認知症になっても、人生をあきらめない。

Even though I have dementia, I have not given up on living.

認知症への偏見は認知症当事者も信じて生きる力を奪うので、この偏見をなくしたい。

Even people suffering from dementia may find themselves believing the distorted views of others about this illness, and end up robbed of their will to live. I want to find ways to eliminate these distortions.

認知症になったからこそ、他人を気にせず、自分の好きなことをしてもらいたい。

It is particularly when people develop dementia that they should do the things they like without giving any mind to others.

不便さを乗り越えて、自分の生活を張り合い持つように工夫して、充実した人生を送ってもらいたい。

I want people to overcome inconveniences and make adjustments to maintain zest in their own lifestyles and lead more complete lives.

私の生き方を参考にして、自分らしく生き方を模索して、残りの人生、悔いのないよう生きてほしい。

I want others to look at my way of living as a positive example, in their search to find their own way of living so that they live the rest of their lives without regrets.

私は、認知症になってから、新たに覚えたことがたくさんあることを伝えたい

What I want to convey to you is the fact that I have learned many new things ever since I developed dementia.

失った機能を数えたり、歎いたりするのではなく、残された能力を信じて、悔いのない人生をおくってもらいたい。

You should neither count what you can no longer do nor lament their loss. Instead, I hope you would instead believe in what you are still capable of and live your lives to the fullest.

認知症になっても、認知症に負けない人生をおくってもらいたい。

Even if you have dementia, I hope you lead your live without giving in to it.

新しいことでも、始める前からできないだろうと思わず、まずはじめてみて、過度にストレスを感じるようだとやめる。

When trying something new, don't think you cannot do it even before you start. First, give it a try without getting too stressed about it.

認知症当事者は何も考えられないとではなく、豊かな精神活動を営むことができる人ととらえてほしい。

It is not true that people with dementia can't think for themselves. I want you to know that people with dementia can lead spiritually fulfilling lives.

認知症当事者を介護の対象だけの存在ではなく、私たちが形成する社会の一員とみとめて欲しい

People with dementia are not simply people who need to be taken care of. We want others to identify as other members of society, too, as we all weave the fabric of society.

他人と比較することなく、なにができなくとも、自分は価値のある尊い存在だと信じて生活してもらいたい

I hope you do not compare yourself with others but instead see your existence itself as precious and life as valuable, despite any inabilities you may have.

辛い厳しい試練にあうかもしれないが、かならず脱出の道があると信じて生きてほしい

Although you may face terrible ordeals, I want you to live your lives believing you will find a way through them.

試練におしつぶされるのではなく、積極的に生きて欲しい

Don't let the challenges ahead rob you of your will. I hope you try to live with a positive attitude.

パソコン、携帯電話をうまく生活にとりいれ、生活に不便を感じない実例をしめしたい

I want to present myself as an example of a good lifestyle led with a PC and mobile phone, which have helped me get past inconveniences in life.

私の生きる姿をとおして認知症当事者が希望をもって生きる姿をしめしたい

I want people with dementia to use my way of living as an example to help them to go forward with hope in their own lives.

認知症が進行する前に、旅行、コンサート、芝居などに行き楽しい思い出をたくさん作り、人生を楽しみたい。

Before my dementia progresses any further, I want to create many pleasant memories and enjoy life, such as by traveling, going to concerts, and watching plays.

ボランティアを通じて、社会に貢献していきたい。決して認知症当事者は社会のお荷物的存在ではないことを示したい。

I hope to contribute to society by participating in volunteer activities. I want others to understand that people with dementia are not a burden on society.

毎日を生かされているのが、今日が生かされている最後日だとおもい感謝して、過ごすこと

The important thing is to live one's life with a sense of gratitude by considering each day a gift and imagining today will be the last day I am blessed with life.

JAPAN TIMES 英字新聞記事２０１６.１.４

Sato is a living example of how people with dementia can live actively and independently — with help and understanding from others.

Sato, 61, who was diagnosed with early onset Alzheimer’s in 2005, has made full use of digital tools to make up for his memory lapses. Creative use of such tools allowed the Gifu Prefecture native to live on his own for 10 years before moving to a care facility in June 2015, he said.

Sato, who lives in Kawaguchi, Saitama Prefecture, has made it a habit to turn his computer on and check his Google calendar when he gets up every morning. While dementia patients are known to lose track of time, the calendar shows which day of the month it is, a convenient feature not available in a handwritten organizer.

Before he goes out, he sets several timers on his mobile phone around the scheduled appointment. Using a train timetable and route finder software, he makes sure he gets an alert on his phone while on the train so he won’t forget where to get off.

Sato published a book in 2014 on his experiences as a dementia patient: “Ninchisho ni natta watashi ga tsutaetaikoto” (“The Message I, as a Dementia Sufferer, Want to Tell”). The book, which won an award last year from the Medical Journalist Association of Japan, is most likely the first book in Japan written entirely by someone with dementia, according to the book’s publisher, Otsuki Shoten.

Though Sato used to work as a systems engineer for a computer company before his diagnosis, he said he started using social media and an iPad only years after he was diagnosed with Alzheimer’s. He recommends that other patients start using such tools in the early stages of their illness.

Sato, who now has more than 1,300 friends on Facebook, makes frequent public speeches around the country, spreading the message that life with dementia comes with many inconveniences, but not necessarily unhappiness.

For people with dementia to live a fulfilling life, however, the widespread prejudice that they are helpless and powerless, and that they can only be burdens to society, needs to be eradicated, he said.

“I want to participate in society,” he said emphatically during a recent interview. “In the future, I would like to organize a group of volunteers who clean the park and around the stations in the Kawaguchi area.”

Sato acknowledges that his health condition fluctuates and sometimes deteriorates to a point he has to cancel an important appointment at the last minute. Still, he keeps a positive outlook on life, and that seems to have made a big difference in slowing the progress of his Alzheimer’s.

“When you get dementia, it’s not the end of the world,” he said. “Be grateful for whatever abilities you still have — and go on believing that you have a wonderful life to lead.”