The Designing for Dementia Knowledge Library

Mayumi Yamada

Age:

58 years old （As of December 2018 interview）

Year of birth:

1960

Place of residence:

Nagoya City, Aichi Prefecture

Relatives living together:

Lives with one child

Occupation:

Former school lunch cook

Age of onset:

About 48 years old

Age of diagnosis:

51 years old

Diagnosis:

Alzheimer type

Using long-term care insurance:

Day service (once per week) and home-visit rehabilitation (twice per week)

Frequency of gatherings with other people with dementia:

Ayumi no Kai (social gathering for those with dementia and families; once per month)
Orange Door Mo-Yakko Nagoya (peer supporting; once per month)

Past experiences

Diagnosis

2008年（48）

A friend who received my New Year's greeting card expressed concern about the disorder of my letters and recommended that I see a doctor. I went to the hospital and was diagnosed with depression. Although I was doubtful, I was placed under observation. (I did not take medication).

2011年（51）

As an increased number of things at work and in daily life became time-consuming or difficult, I visited the hospital again and was diagnosed with juvenile Alzheimer's disease.
When I reported to my family doctor that I had been diagnosed with juvenile dementia, I was told that "juvenile dementia can make me completely disabled in five years." I was deeply shocked.
I told my colleagues at work and close friends about the diagnosis but did not want my neighbors to know.

2013年（53）

A friend of mine told me about a social gathering for people with juvenile dementia and their families (which later became "Ayumi no Kai"), and I attended. However, I could not fit in because other participants were predominantly male.
For about two years, I went only occasionally to the gathering.

2015年（55）

I took a leave of absence from work. At Ayumi no Kai, I met a lady participant with dementia and was able to talk with her about difficulties we were having and how we were living our lives. I regained my energy. I began to think, "If there is something I can do now, I will do my best."
I attended a lecture by Tomofumi Tanno in Nagoya City and met Mr. Tanno.

2016年（56）

I started to give lectures, hoping to "cheer up those with the disease."
I visited and inspected Mr. Tanno's Orange Door.

2017年（57）

I became a member of the Dementia Specialist Subcommittee of the Nagoya City Nishi Ward Community Comprehensive Care Promotion Council.
I established and became the representative of "Orange Door Mo-Yakko Nagoya," a consultation service for people with juvenile dementia.

2018年（58）

I started "Traveling Orange Door" to meet and energize people with the disease when I visited other prefectures to give lectures.

Publication, links, etc.

Website|Mayumi Yamada's Blog LINK

Joy in life and living

Joy that you have given up

Working

Joy that you have given up

Cooking

Joy that you have given up

Doing Yoga and exercising at the gym
(Because it takes time to change clothes and I cannot lock the locker.)

Joy that remains with you even after onset

Going out for drinking and traveling with friends

Joy that has come to you after onset

Interacting and energizing those with the disease

Joy that has come to you after onset

Visiting various cities for lectures or other purposes, meeting many people, and eating delicious food

Joy that has come to you after onset

Putting on makeups and changing clothes; I do sometimes have trouble, but there are people who are willing to think together with me and help me.

Something you would like to do in the future

I feel that I need to send out information to those with the disease. I would like to resume blogging.
I want to tell my story as much and as long as I can.
I would like to provide VR of dementia symptoms and promote its use in professional education.

Challenges in daily living

reading letters, words and sentences

writing letters, words and sentences

electricity/gas/water

Joy

Joy

writing letters, words and sentences

electricity/gas/water

letters/New Year's greeting cards

exchanging business cards

E-mails/Line/Messenger

Joy

Joy

writing letters, words and sentences

electricity/gas/water

blog/SNS

telephone/smartphone

reading letters, words and sentences

stationery

schedule

letters/New Year's greeting cards

Joy

5 6

WORK

work speed

exchanging business cards

Joy

11 Areas of Daily Living

Daily Living Challenge

DATA

the Mental or Physical Dysfunction

Knowledge
exercising
changing clothes

I cannot change my clothes at the gym. It was so hard, and I stopped going to the gym.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
makeup

I have difficulty putting on makeup by myself. I do not know where on my face I should put my hands and how I should move them.

Cannot sense or operate one's own body
Cannot distinguish colors
Cannot tell distance
Cannot tell directions or loss of spatial orientation

I get eyelash extensions. I get makeup done by various people, including occupational therapists, helpers, neighbors and my daughter.
umbrella

I cannot fold the umbrella.

Cannot recall processes and procedures to accomplish things
Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
umbrella

I have difficulty opening and closing the umbrella because I cannot tell the button sticking out. I cannot find the button.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
footwear

When putting on slippers or shoes, I forget to put on one side of the pair because I can recognize only the right or the left side of the pair or only one of my feet, although both are present.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
changing clothes

As the seasons change and my clothes change, I need to practice putting on and taking off my clothes.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
changing clothes

Changing clothes is difficult and takes time. I do not know where to hold my clothes or where to put my hands through.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
socks

When changing clothes, I have difficulty putting on socks. I feel uncomfortable after wearing them upside down.

Cannot sense or operate one's own body
Cannot recognize shapes and sizes correctly
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
kitchen knife

When cooking, I cannot use the knife well. It is difficult for me to cut food into the same shape or into small pieces.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
product packages

When eating snacks, it is difficult for me to open the bag. It is difficult to open by pulling it to both sides or by tearing it front to back.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
product packages

When opening a PET bottle, I cannot remove the cap. I cannot tell which direction to turn it or how to apply force.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
product packages

I have difficulty opening the lid of the yogurt. I get tired because I cannot open it quickly.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
Become easily fatigued, mentally and physically
product packages

When there are a lot of PET bottles on the desk, I cannot tell which one is mine.

Cannot retain/recall your own behavior, experiences, and habits
cooking appliances

When a fire broke out in the toaster, I was unable to close the lid quickly and instead blew on the fire.

Cannot recall processes and procedures to accomplish things
Cannot turn thoughts into actions
dining table

After drinking a beverage, I wonder where on my desk I should put the PET bottle.

Cannot turn thoughts into actions
Cannot sense or operate one's own body
Cannot distinguish colors
Cannot tell distance
Cannot tell depth
dining table

If I think too much about how to eat while eating, it becomes even harder for me to eat, and my hands stop moving.

Become easily fatigued, mentally and physically

I can eat things such as my favorite fish fairly well. Things go better when I am eating comfortably, for example while chatting with others.
eating utensils
dining table

When dining, I cannot eat well unless I keep thinking about how to hold, cut, and bring the food to my mouth. Eating is tiring because I am always thinking.

Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
Become easily fatigued, mentally and physically

I ask to have my food cut into bite-sized pieces because they are generally easier to eat than large pieces.
dining table

I get tired of picking up PET bottles from the desk. I have to judge the distance and consciously reach out my hand to get it.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
Become easily fatigued, mentally and physically
eating utensils

When eating, it is difficult for me to use and hold chopsticks.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
eating utensils

When dining, I cannot stick my fork to where I aim at.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
eating utensils

Mugs are difficult to hold and use. They are difficult to use if the color is the same inside and outside.

Cannot sense or operate one's own body
Cannot distinguish colors
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation

It is better if they have adequate weight and some firmness. They are easier to use if the colors are different inside and outside.
It is difficult for me to pull out the toilet paper from the roll by turning the paper round and round. I do not know where to hold and how to pull out.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
telephone/smartphone
cleaning up

It is difficult for me to plug appliances, such as a vacuum cleaner or a smart phone for charging the battery, into the electrical socket holes.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
schedule
disposing of garbage

I cannot remember garbage pick-up days that are not weekly but occasional, such as once a month.

Cannot retain/recall your plans and schedule

She is asking her daughter to take out the trash.
reading letters, words and sentences
schedule

I cannot locate dates in my scheduler notebook. I get confused when dates across different weeks are on the same line.

Cannot tell directions or loss of spatial orientation
telephone/smartphone

I have difficulty entering password numbers on my smart phone.

Cannot retain/recall numbers and symbols
Cannot sense or operate one's own body
Cannot tell distance
Cannot tell directions or loss of spatial orientation

I am using a fingerprinted password.
cleaning up

When vacuuming, it is difficult for me to put the parts together and assemble the cleaner.

Cannot sense or operate one's own body
Cannot recognize shapes and sizes correctly
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
washing machine

When doing the laundry, I have difficulty measuring the detergent. I cannot get the detergent into the lid properly.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation

I use gel-ball detergents.
hanging laundry

I cannot put clothes on hangers after washing. I have difficulty putting hangers in sleeves.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
hanging laundry

It is difficult for me to clip clothes with clothespins after washing them.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
hanging laundry

I have difficulty hanging my laundry on the clothesline after washing.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
key

It is difficult for me to insert the key into the keyhole and turn it to lock the door.

Cannot sense or operate one's own body
Cannot recognize shapes and sizes correctly
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation

I put a rabbit-shaped cover on the head of the key to make it easier for me to see the front and back of the key.
wallet

When shopping, it is difficult for me to put money away in the wallet.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
wallet

It is difficult for me to take out money from my wallet when shopping.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
calculation

I cannot do the math with money. I have difficulty adding numbers in order from the right to the left.

What you see/hear immediately disappears from memory
Cannot retain/recall numbers and symbols
Cannot perform simple calculations
using ATM machines

When I withdraw money at the post office, I have difficulty operating the ATM. I do not know where to press.

Cannot recall processes and procedures to accomplish things
electricity/gas/water
writing letters, words and sentences
public procedures

It is difficult for me to write my name on the contract form required in the gas usage application process.

Cannot sense or operate one's own body
Cannot write neatly
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
tax
public procedures

Because I cannot calculate, I also cannot apply for medical expense deductions.

Cannot perform simple calculations
bagging items
conversation

When I ask clerks to bag my purchases at the supermarket, they do so without saying a word.
belongings
bringing items home

When shopping, I forget to take home what I bought and return to the store to pick it up.

Cannot retain/recall your own behavior, experiences, and habits
bagging items

When shopping, it is difficult for me to bag what I have purchased. I do not know how to open the bag. Things that I thought I put in the bag are not inside.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
wallet

When shopping, I cannot take out my purse from my bag well because it is difficult for me to put my hand into my bag.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
shopping basket

When shopping, it is difficult for me to pick up the shopping basket.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
bath

It is difficult for me to squeeze the facial cleansing foam. I cannot put it on my palm well.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell directions or loss of spatial orientation

I am using a pump-type container that makes bubbles.
brushing teeth

I cannot brush my teeth properly and leave residue on them. I do not know how to move the toothbrush around in my mouth.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation

Electric toothbrushes are easier to use. Mouthpiece-shaped toothbrushes are also available.
brushing teeth

It is difficult for me to squeeze the toothpaste onto my toothbrush properly. I always put it on while dropping it around.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell directions or loss of spatial orientation
belongings
public procedures

When visiting the ward office, I forget to bring my personal seal, which I need there.

Cannot recall processes and procedures to accomplish things
bicycle

自転車のブレーキが握れず、爆走してしまう

Cannot turn thoughts into actions
Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
traffic light
taking walks

I cannot pay attention to traffic signals while taking a walk.

Cannot perform more than one thing simultaneously
writing letters, words and sentences
public procedures

I have difficulty writing my address, especially numbers.

Cannot retain/recall numbers and symbols
Cannot sense or operate one's own body
Cannot write neatly
Cannot tell distance
Cannot tell depth
writing letters, words and sentences
public procedures

I have difficulty filling out paperwork at the bank counter. I cannot write but need to fill it out at the counter. My family member hold my hand and sign documents for me.

Cannot recall letters and sentences
Cannot sense or operate one's own body
Cannot write neatly
Cannot tell distance
telephone/smartphone
blog/SNS

When blogging, I cannot type letters on my phone.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell directions or loss of spatial orientation

I write blogs using the voice input function on my cell phone.
blog/SNS

I forget the procedure for writing and uploading blog entries.

Cannot recall processes and procedures to accomplish things
letters/New Year's greeting cards
writing letters, words and sentences

I was not able to write letters well on New Year's cards, and a friend who saw the letters told me that I should go to the hospital.

Cannot sense or operate one's own body
Cannot write neatly
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
exchanging business cards

It is difficult for me to hand a business card at just the right distance to the recipient.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
conversation
sports

I stopped doing yoga after an instructor, to whom I did not tell about my dementia, got upset about what I could not do, scolded me and said mean things to me.
E-mails/Line/Messenger

I cannot move my hands or fingers well when e-mailing or writing on LINE.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell directions or loss of spatial orientation
conversation

The word "yogurt" does not come to mind.

Cannot recall everyday words that you have used often
conversation

The word "scissors" does not immediately come to mind.

Cannot recall everyday words that you have used often
conversation

Words do not come out easily.

Cannot recall everyday words that you have used often
conversation

The word "fork" does not immediately come to mind.

Cannot recall everyday words that you have used often
sports

When I practice yoga, I do not know how to move my limbs. I am not able to tell where my right foot is and cannot move my limbs as I am told to.

Cannot sense or operate one's own body
Cannot tell directions or loss of spatial orientation
stationery

Even if I can put my fingers in the scissors handle, it is difficult for me to cut paper because I do not know how to move the paper and the scissors.

Cannot sense or operate one's own body
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
writing letters, words and sentences

I cannot write letters. It is difficult to hold the pen. It is also difficult to find where to place the pen and to figure out how to move it.

Cannot write neatly
Cannot tell distance
Cannot tell depth
Cannot tell directions or loss of spatial orientation
reading letters, words and sentences

When reading a text and there is a line break, my eyes do not automatically go to the next line, and I cannot understand the text.

What you see/hear immediately disappears from memory
Cannot tell directions or loss of spatial orientation
work speed

It is difficult for me to work at the same speed as others.

Cannot perform more than one thing simultaneously

Physical and mental dysfunctions

What you see/hear immediately disappears from memory

What pops into your head immediately disappears from memory

Cannot process more than one thing that you see/hear simultaneously

Cannot retain/recall your own behavior, experiences, and habits

Cannot retain/recall your plans and schedule

Cannot retain/recall places and landmarks

Cannot retain/recall numbers and symbols

Cannot retain/recall proper nouns

Cannot recall everyday words that you have used often

Cannot retain/recall names of people

Cannot retain/recall faces of people

Cannot recall processes and procedures to accomplish things

Recall erroneous memories (mix up memories)

Cannot recall letters and sentences

Cannot perform more than one thing simultaneously

Mix things up if you try to do more than one thing simultaneously

Cannot integrate/process more than one piece of information

Cannot perform simple calculations

Cannot turn thoughts into actions

Cannot sense or operate one's own body

Cannot write neatly

Small changes prevent you from completing familiar actions

Be restless and talkative/hyperverbal

Your hands and body move impulsively

Take unintended actions

Cannot recognize shapes and sizes correctly

Cannot distinguish colors

Have a constricted or narrow visual field

Cannot recognize faces of people correctly

See faces of people in various things

Feel as if you are seeing things that should not be there

Stationary objects appear to be in motion

Visually misperceive things

Have sensitive sight, hearing, and smell

Cannot pay attention to sounds that you need to listen to

Catch only part of what you hear

Feel as if you are hearing sounds that should not be there

No sense of smell

Feel as if you are sensing smells that should not be there

Have altered skin sensations

Feel stimulation and pain that do not exist

Have decreased sense of taste

Cannot associate when with what

Your sense of time does not match actual time

Lost sense of clock time

Cannot tell dates and days of the week

Have altered sense of speed

Cannot tell distance

Cannot tell depth

Cannot tell directions or loss of spatial orientation

Cannot associate plane with space

Space appears to be distorted

Become easily fatigued, mentally and physically

Cannot regulate body temperature and sweating

Have headaches

Cannot regulate blood pressure

Cannot sleep

Cannot adjust to seasonal changes

Be quick to assume/worry too much

Be depressed/anxious

Feel frustrated/quick to anger

Have poor vision in the dark

Be preoccupied with/fixated on certain things

Lose sense of balance

Message to the society

I want people with dementia to come outside.
I would like to tell them not to stay home all the time and instead come outside because, once they are out, people will help.