Words fora Journey:
A Pattern
Language for
Living Wellwith Dementia

152

Iba, Takashi
Keio University, Japaniba@sfc.keio.ac.jp

Kaneko, Tomoki
Keio University, Japan
t14236tk@sfc.keio.ac.jp

Kamada, Arisa
Keio University, Japan
arskmd@sfc.keio.ac.jp

Tamaki, Nao
Keio University, Japans12552nt@sfc.keio.ac.jp

Okada, Makoto
Fujitsu Laboratories, Japanokadamkt@jp.fujitsu.com

This paper presents Words for a Journey, a pattern language
for living well with dementia. This pattern language consists of
40 patterns, which are categorized into three different groups:
words for those living with dementia, words for caring families,
and words for everyone. These patterns can be used in three
ways: (1) reading them and putting those into practice, (2) using
them as a part of their vocabulary to speak with other people
about matters related to the patterns in daily life, and (3) talking
with others about experiences based on the patterns. This paper demonstrates some cases of workshops utilizing Words fora Journey for sharing experiences, expressing positive feelings
in a day care center, enriching nursing education, and inventing
new products and services to help people in the situations described by the patterns. Finally, we discuss ideas for the patternlanguage’s use by various stakeholders.
Pattern Language; Pattern Language 3.0;
Dialog; Idea Generation; Design, Quality of Life

Dementia;

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1. Introduction
In Japan, the number of elderly people over 65 years old with dementia, including mild
cognitive impairment, is estimated to be 8.46 million (the Ministry of Health, Labour andWelfare, 2012). This represents one in four people over the age of 65 or one in 15 people
overall in Japan. Dementia is a syndrome of deterioration of the memory, thinking, behavior,and the ability to perform daily life activities. Dementia has physical, psychological, social,and economic impacts on affected people and their families and society. Worldwide, 47.5
million people have dementia (WHO, 2015), and it is an emerging global social issue.
While medical and welfare support for those with dementia is growing, support for daily
activities with the condition is still inadequate. In Japan, the Ministry of Health, Labour andWelfare announced “A New Orange Plan: A Comprehensive Strategy for the Promotion of
Dementia Measures,” and while it promotes early diagnosis, it asserted that support after
diagnosis is not yet sufficient. Furthermore, the stigma surrounding dementia is present not
only in society but is also deep-rooted in persons with dementia and their families. Consequently, promoting “early diagnosis” leads to “early despair.”On the other hand, some people live well with dementia. They do not give up everything intheir lives just because they have dementia. In 2014, the Japan Dementia Working Groupwas established and met for the first time in Japan, working toward the elimination of the“early diagnosis = early despair” notion. Masahiko Sato, a joint representative, expressed
the following view: “Even though I have dementia, the many things I can no longer do arealso accompanied by many things I can do. I have introduced ways to be creative in my lifestyle without giving in to despair and continue living with hope” (Sato, 2014). There are many
like him who live well with dementia.
Social movements that convey the voices of such people have already emerged; however,they need more powerful tools to reframe the concept of dementia and to change behaviors to make a social impact. To that end, in this paper, we present a pattern language forliving well with dementia, which we call Words for a Journey. Pattern Language is a methodof sharing practical knowledge in a target domain. We mined the knowledge from deep
interviews, revealing the principles behind cases, and describing them in a certain format.
In the following sections, we will overview the pattern language Words for a Journey, present
the patterns, show cases of workshops using them, and discuss the advantages of using thepattern languages.

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Words for a Journey: A Pattern Language for Living Well with Dementia

2. Overview of Words for a Journey
The pattern language for living with dementia, Words for a Journey, contains positive, practical wisdom about daily life, which was extracted from interviews about their experienceswith people who are living well with dementia.
The method of pattern language was invented by Christopher Alexander for architecturaldesign (Alexander et al., 1977; Alexander, 1979) and then applied to software design (Beck& Cunningham, 1987; Gamma, et al., 1995). Recently, this method has been applied to various domains related to creative human actions (Iba, 2015), which we call “Pattern Language
3.0,” including education (Pedagogical Patterns Editorial Board, 2012), innovation (Manns& Rising, 2005; Manns & Rising, 2015), learning (Hoover & Oshineye, 2009, Iba & Iba Lab,
2014a), collaboration (Iba & Iba Lab, 2014b), presentation (Iba & Iba Lab, 2014c), change
making (Shimomukai, et al., 2015), disaster prevention (Furukawazono, et al. 2015), beautyin everyday life (Arao, et al., 2012), and cooking (Isaku & Iba, 2015). Words for a Journey is thefirst pattern language in the social welfare domain.
The core of Words for a Journey is the pattern “A New Journey” which offers a new perspective on living with dementia. Although it is not easy to accept the fact that you, a family member, or someone close to you has dementia, if you think of it as the start of a new journey,
you can live more positively. For example, if you have dementia, you will be spending moretime with your family, which will be a good opportunity to get to know them better. You will
be going together to places where you used to go alone, and you will get a chance to reflecton each other’s lives and notice things about them that you did not know before.
The rest of the patterns in this pattern language provide practical and comparatively more
concrete knowledge to live well with dementia. These patterns are categorized into threedifferent groups: words for those living with dementia, words for caregiving families, andwords for everyone (Figure 1). From the perspective of the pattern language method, thisstructure is unusual and quite new. Although existing pattern languages are designed for
only one type of people for solving problems, Words for a Journey helps several types ofpeople solve problems collaboratively with other types of people.
This means that it is not enough for only people with dementia to do their best; it is notenough for only caring families to do their best; and it is not enough for only others, forexample, neighbors and care staff, to do their best. A dementia-friendly society will emerge
only with their mutual cooperation. Words for a Journey enables spontaneous collaboration
among them without requiring them to consciously think about collaboration (Figure 2).

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Figure 1: The three groups in Words for a Journey

Figure 2: Interrelations between patterns among the groups
Each pattern is written in the same pattern format: Pattern Name, Introduction, Pattern
Illustration, Context, Problem, Solution, and Consequence. The Pattern Name defines thepattern with a short memorable word for easy reference, and the Introduction helps readers
understand a living image of the pattern. Pattern Illustration shows the pattern’s essence,
including characters expressing human movements and feelings. The Context describes
the situations in which the pattern should be used. Followed by the words “In this context,”
a Problem that is likely to occur in the context is presented. Then, followed by the word

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Words for a Journey: A Pattern Language for Living Well with Dementia“Therefore,” a solution to the problem is presented. Finally, after the word “Consequently,”
the Consequence describes how things can change when this pattern is put into practice.
Note that the Pattern Name is not just a headline or summary for the pattern but a newword that can be used in conversations. Furthermore, Pattern Illustration is not just a complementary figure illustrating the pattern but an important element symbolically representing the essence of the pattern (Harasawa, et al., 2014; Miyazaki, et al., 2015; Iba & Iba Lab,
2015). Therefore, we elaborated on the name and illustration. Figure 3 shows an example ofthe pattern “Daily Chore” from the “Words for Those Living with Dementia” group.

Pattern Number

No.7

Pattern Name

Daily Chore

Introduction

Even the smallest things matter
if you do them every day.

Pattern Illustration

Context

You increasingly need the help of other people to do things for you.
 In this context

ProblemIf you start to think you shouldn’t do something on your own and shouldhave everything done by others, you will start to become unable to do eventhe tasks that you can do now. You might be worried about whether you can still
do a task in the same way that you used to. On top of that, your family may offerto do everything for you out of concern. However, if you accept having everything
done for you, your brain will receive less stimulation, and your symptoms may
progress more rapidly.

Solution

Talk with your family and create a chore that you can do by yourself everyday. It can be simple tasks such as watering a plant and giving the pet dog his/her
food. Tasks such as folding the laundry and making coffee for the family… anythingsimilar to this is important. Reference your “Can-Do List” to look for chores that you
can do.

Consequence

You can actively engage in the actions around your life. The chores will create a
steady rhythm in your day, making it easier for you to maintain control over yourlife. The chores would also become a good starting point to have conversations
with your family.

 Therefore

 Consequently

 6. Can-Do List

Related Patterns

 21. Chance to Shine 38. Inventing Jobs

Figure 3: Format and Contents of the “Daily Chore” Pattern

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Words for a Journey is available as a book and a card set. The book contains the full contentsof the patterns (Figure 4). Each pattern is printed in a double page spread; the left page
contains the Pattern Number, Pattern Name, Introduction, Pattern Illustration, and Context;
and the right page contains the Problem, Solution, Consequence, and Related Patterns. We
took care to keep the size of letters of the text large enough for elderly people to read easily.
In addition, we left wide margins and plenty of blank space to comfortably emphasize thesentences for the pattern. On the cover, we intentionally used positive, gentle colors andfaces with positive—but not too strong—expressions.
The card set is designed with the same design standards of simplicity, gentleness, and comfort. The card set consists of the same patterns but contains only a summary of each pattern (Figure 5). It is intended for workshops in which people talk about their experiencesusing the patterns. Each pattern is printed on one side: Pattern Name, Introduction, Pattern
Illustration, Context, a key sentence of the Problem, a key sentence of the Solution, andPattern Number. The omission of the details is quite important because it makes people
initiate conversations rather than reading in the workshop.

Figure 4: Words for a Journey Book

Figure 5: Words for a Journey Cards

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3. Patterns in Words for a Journey
As we mentioned earlier, the core pattern is “A New Journey.” Table 1 shows a summary of
the pattern: Pattern Number; Pattern Name; Pattern Illustration; Context; and key sentences of Problem and Solution. The rest of the patterns in Words for a Journey are categorized
into three different groups: words for those living with dementia, words for caring families,
and words for everyone.
The first group of patterns, for those living with dementia, contains 14 patterns: The First
Step, Departure Announcement, Travel Plan, Fellow Traveler, Can-Do List, Daily Chores,
Self-Reflecting Room, Favorite Place, Voice of Experience, Turning the Tide, Live in the Moment, Self-Intro Album, Own Way of Expressing, and Gift of Words (Table 2). These arepatterns to help people with dementia live well with dementia.
The second group of patterns, for caring families, contains 17 patterns: Going Together,Team Leader, Family Expert, The Three Consultants, Disclosing Chat, Chance to Shine, Preparation for the Dream, Make It Funny, Usual Talk, The Seen World, Personal Time, Emotion
Switch, Casual Counseling, Special Day, Generational Mix, The Amusement Committee, andHint of Feelings (Table 3). These are patterns to help caring families help those with dementia to live well and also take care of themselves.
The third group of patterns, for everyone, contains eight patterns: Job-Specific Contributions, On-the-Spot Helper, Encouraging Supporter, Personal Connections, Mix-Up Event,
Inventing Jobs, Delivering the Voice, and Warm Design (Table 4). These are the patterns foranyone to use to support people with dementia and their families.
CORE
No.

1

Pattern NameA New Journey

Pattern Illustration

Context, Problem, and Solution
You, a family member, or someone close to you
has been diagnosed with dementia. In this context,
you may at first have trouble accepting the fact,from the fear that you may not be able to pursue
the life plans that you previously had. Therefore,
you must accept the fact that you will have to
make some changes in your life, and learn to thinkof it as the start of a new journey.

Table 1: A Pattern in the CORE category

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WORDS FOR THOSE LIVING WITH DEMENTIA
No.

2

3

4

5

6

7

160

Pattern Name

Pattern Illustration

Context, Problem, and Solution

The First Step

You recently became aware of the possibility thatyou may have dementia. You may have noticed
that you have become more forgetful, or people
around you may have noticed symptoms. In thiscontext, if you are reluctant to visit a doctor and do
not receive proper care, it will hinder early detection and treatment and may cause your symptoms
to worsen. Therefore, think of your first visit for an
examination as the start of a journey: a journey tolive well, with others, as a strong individual.

Departure
Announcement

You are at the beginning of ‘A New Journey.’ In thiscontext, your family won’t know how much theyshould get involved with your disease, especially
if the symptoms are still mild. Therefore, take theopportunity to tell your family about your disease.

Travel Plan

You have taken ‘The First Step’ of your journey,
and made your ‘Departure Announcement’ to yourfamily. In this context, the life plans that you had
before this New Journey may not work out exactly
the way you planned. Therefore, get help fromfamily, friends and even specialists to arrange a
new life plan so that you can still live up to your fullpotential, even with dementia.

Fellow Travellers

You have come to the beginning of ‘A New
Journey,’ made your ‘Departure Announcement,’and have made your ‘Travel Plan’. In this context,
although you are carrying out your ‘Travel Plans’,sometimes you may lose confidence in yourself
and have a hard time cheering yourself up. Therefore, find people that you can mutually empathizewith and have fun with those people.

Can-Do List

You are trying to live positively with dementia, butthere will still be times when you feel down. In
this context, you may feel trapped by sad feelings
caused by fright and worries about your future.
Therefore, make a list of the things that you canstill do now.

Daily Chore

You increasingly need the help of other people
to do things for you. In this context, if you start tothink you shouldn’t do something on your own
and should have everything done by others, youwill start to become unable to do even the tasks
that you can do now. Therefore, talk with yourfamily and create a chore that you can do by
yourself every day.

Words for a Journey: A Pattern Language for Living Well with Dementia

8

9

10

11

12

13

Self-Reflecting RoomYou sometimes become afraid of gradually losing
your memories. In this context, it is sad if, in thenear future, you do not remember what things
once composed your identity. Therefore, makeyour room reflect yourself by filling it with thethings you think are beautiful, the things that you
treasure, and the things that tell stories about
moments from your life.

Favorite Place

You have begun spending less time outside andmore time inside your home. In this context, staying inside your home all the time is not fun andmay be tiring. Therefore, find a place where you
can go by yourself without any trouble, and makesure your family knows about the place too.

Voice of ExperienceYou have read and heard advice on living with dementia and are thinking of putting it into practice.
In this context, in your head, you understand what
you should do, but actually putting it into practiceis hard. Therefore, find a person who has been
living with dementia and seek first-hand advice
from them.

Turning the Tide

You are starting to get used to your journey ofliving well with dementia. In this context, you feelinconvenience in the environment around you
and wish for that to change, but keeping this
discontent to yourself or within your family will not
solve anything. Therefore, you can start by sharing
your experience and discontent to make people
become aware of the problems.

Live in the Moment

Self-Intro AlbumA fun event such as a party or vacation is coming
up. In this context, the event seems like fun, butsomewhere in your mind you are hesitating to
go. Therefore, jump into the event and enjoy the
moment.
You recently have many opportunities to meet
new people. In this context, you sometimes havetrouble introducing yourself with words. Therefore, keep a small item with you, such as an album,
which you can use to show who you are.

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14

15

Own Way of
Expressing

You feel you are having trouble expressing yourthoughts and emotions with words. In this context,
having trouble expressing yourself and not being
understood is stressful and takes away from yourconfidence. Therefore, find a way that you could
enjoy expressing yourself that doesn’t use words.

Gift of Words

You are gaining support from many people aroundyou. In this context, you are feeling thankfulness
towards these people, but they will not understand if it is just in your mind. Therefore, express
your thankfulness in words.

Table 2: Patterns in the WORDS FOR THOSE LIVING WITH DEMENTIA category
WORDS FOR CARING FAMILIES
No.

16

17

18

162

Pattern Name

Pattern Illustration

Context, Problem, and Solution

Going Together

You recently became aware, due to forgetfulness
or other behavior that a family member may havedementia. In this context, if you do not take themto the doctor to receive proper care, it will hinder
early detection and treatment and may cause
symptoms to worsen. Therefore, think of the first
visit for examination as the start of a new journey
to live well with others as a strong individual withdementia and help them by taking the ‘First Step’
with them.

Team Leader

You are going to be the closest person to support
the family member with dementia. In this context,
trying to do everything by yourself is very stressful
and tiring. Therefore, name yourself as the ‘leader’of the support team and determine who will be on
the team and how the team will be organized.

Family Expert

You have been collecting information about
dementia care from books and the Internet. In
this context, there is no guarantee that all of theinformation will work perfectly for your situation.
Therefore, become an expert in the house at searching for and collecting information that would bespecifically helpful at your home.

Words for a Journey: A Pattern Language for Living Well with Dementia

19

20

21

22

23

24

The ThreeConsultants

You have started providing care for your family
member with dementia and are facing numerous
problems. In this context, the problems are spread
across a broad range of areas from daily life toexpert knowledge, and it is difficult to find the right
person to ask for help. Therefore, select threedifferent types of consultants according to theirexpertise: medical help, caregiving help, and family
help.

Disclosing Chat

You have not got the opportunity to tell the people
around you that a family member of yours has
been diagnosed with dementia. In this context,
if people around you do not know about thesituation, you will not be able to ask for help, norwould they be able to help you. Therefore, do not
set a special occasion to disclose the disease, but
mention it casually during brief conversations withthe person.

Chance to Shine

You are putting effort into caregiving. In thiscontext, if you do everything for the person withdementia, including the tasks that they can do on
their own, eventually they would become unable
to do anything. Therefore, provide small opportunities for the person with dementia to contributeto the family.

Preparation
for the DreamYou have found out that the person you are caring
for has a dream or goal that they wish to achieve.
In this context, you want to help achieve theirgoals, but you think you should wait until they
recover a little before they start. Therefore, even
if the goal seems hard to achieve, start now andmove little by little towards its actualization.

Make it Funny

You are giving care to your loved family member.
In this context, when caregiving continues for along period, topics of conversations tend to becentered around the disease itself and its care. Therefore, pick up signs of enjoyment in their words,
and reply to amplify their fun feelings.

Usual Talk

You talk to your loved family member, but sometimes they ‘space out’ and you do not get ananswer. In this context, if you decide they would
not understand this topic and end the conversation, eventually you will have less and less to talkabout with them. Therefore, continue the conversation even if they do not understand you and you
do not receive an answer.

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25

26

27

28

29

30

164

The Seen WorldYour loved one with dementia sometimes says
things that differ from the facts and reality. In thiscontext, just plain neglect of what they are seeing
will hurt the person’s feelings. Therefore, do notaffirm or deny what they are saying or feeling.

Personal TimeYou are spending much of your time giving carefor your diagnosed family member. In this context,
if you become too devoted to caregiving, you will
eventually become emotionally tired and lose
yourself in being so busy. Therefore, gain cooperation from the people around you and take time offfor yourself.

Emotion Switch

Even if you have the deepest love towards them,
there will come times when you feel frustration oranger when giving care for someone with dementia. In this context, if these negative emotions pileup, one day they may explode. Therefore, have a
way to switch your emotions to something morepositive and move on.

Casual Counseling

You are bearing most of the caregiving responsibility in the house. In this context, you are experiencing problems and worries that you try to handle
by yourself and have not had the opportunity totalk about it to the rest of the family. Therefore,
find a casual opportunity to lightly disclose yourfeelings to family members.

Special Day

The days are passing by and each day seems
similar to the one before. In this context, when
the days are monotonous, maintaining a positive
feeling both for the person with dementia andcaring families is hard. Therefore, put aside time
for a ‘Special Day’ once in a while, where theperson being cared for can experience something
different from the usual.

Generational Mix

The ones giving care are always the same few
people. In this context, when the same people
are always around, the person with dementia will
be confined to a very small world. Therefore, set
up opportunities for the person with dementia
to meet and talk to children and adults of various
generations.

Words for a Journey: A Pattern Language for Living Well with Dementia

31

32

The Amusement
Committee

Some family members are taking central roles in
caregiving. In this context, family and relatives wholive far away rarely get a chance to spend time withthe person with dementia. Therefore, set up a fun
event and get different people from family andrelatives involved in planning it.

Hint of Feelings

You are starting to get used to giving care to yourloved family member diagnosed with dementia. In
this context, when you are busy giving care for the
person, you may be unknowingly making them dothings against their will. Therefore, look into theactions and words of the person you are caring forand search for hints of what they truly want.

Table 3: Patterns in the WORDS FOR CAREGIVING FAMILIES category
WORDS FOR EVERYONE
No.

33

34

35

Pattern Name

Pattern Illustration

Context, Problem, and Solution

Job-SpecificContributions

In Japan alone, approximately 8 million people are
believed to have dementia today, including thoseat risk; in addition, one in four elderly have either
dementia or show early symptoms of the disease.
In this context, though the people with dementia
need help in a wide variety of areas in their daily
life, little effort is made to provide assistance outside the medical and welfare fields. Therefore, set
an opportunity to think about how you can help
with the issue of dementia hindering your work,and put the ideas into practice.

On-the-Spot Helper

You are walking in town and see someone
showing unusual behavior. They may be walking
in an uncoordinated manner or having trouble
controlling a machine. In this context, that person
may have dementia and may need help. Therefore, become an ‘On-the-Spot Helper’ and offer tohelp for a short amount of time.

Encouraging
Supporter

You have a friend who is giving care to a family
member with dementia. In this context, you feelrude to step into family problems, so you do nottouch on the topic. Therefore, have them talkabout their situation and what kinds of efforts they
are putting in.

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36

37

38

39

40

Personal
Connections

You are seeking ways to learn more about dementia and get involved. In this context, startingby reading books or taking classes on dementia
and caregiving can be overwhelming and hard tocontinue. Therefore, create a connection with anactual person with dementia, and learn necessary
information by spending time with them.

Mix-Up Event

You are planning an event for people with dementia and their family members. In this context, it ishard for participants to truly have fun at an event
designed specifically for the people with dementia.
Therefore, organize the event so that people canenjoy it regardless of if they have dementia or not.

Inventing Jobs

A person with dementia wishes to contribute tosociety. In this context, though the person may
have the will to work, it is often difficult to finda job that they are capable of doing. Therefore,
create a new opportunity for them to contribute totheir society with the help of local companies andgovernment.

Delivering
the Voice

You regularly spend time among people with dementia, and often work with them. In this context,
there are still many people in the world who areunconcerned or uninformed about dementia.
Therefore, help deliver the voice of the people withdementia and their families to as many people aspossible.

Warm Design

As part of your normal job (i.e. ‘Job-Specific Contributions’) you have thought of a new product orservice targeted at people with dementia and thepeople around them. In this context, if you put
all of your effort into its function, but its design isunattractive, your target audience will not want to
use it. Therefore, make it so that the user feels thedesign fits them perfectly and gives them a senseof kindness.

Table 4: Patterns in the WORDS FOR EVERYONE category

4. Using the Patterns Words for a Journey
The primary goal of this pattern language, Words for a Journey, is for people with dementia
and their families to gain insights into living well with dementia. It enables people to absorb
the patterns from Words for a Journey into their daily lives and engage with others to expand
their understanding of the disorder.

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Basically, there are three ways for people with dementia and their families to use thesepatterns in daily lives. First, they read through the collection of patterns and put those thatthey find interesting or useful into practice. This should become an opportunity for them toinitiate a new action for positive change that they otherwise would not have taken (Figure 6).
By reading through the patterns, it becomes easy to incorporate positive thinking into daily
life through concrete images. Here, the fact that the abstract patterns are already written isquite important because it is extremely difficult for people to extract wisdom from others’
experiences and then apply it to their own situations. The patterns provide a shortcut, so
users can simply apply the patterns to their situations.

Figure 6: Reading the book and learning wisdom
The second way to use the patterns is to use them as a part of their vocabulary when speaking with others about matters related to these patterns in daily life (Figure 7). For example,
a person with dementia and his/her family can, for example, have the following conversation: “I should put this picture on the wall in my Self-Reflecting Room so we can remember
this family trip.” By including these words in their vocabulary, they come to be thought of as
something to be considered. The current problem suggested by the pattern can be worked
on and solved, and the potential risk of future problems can be reduced.

Figure 7: Using words as common vocabulary in daily life

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The third way to use this pattern language is to talk about experiences with others using thepatterns (Figure 8). This dialog sometimes takes place in a “dementia cafés” or workshop
setting. The facilitator picks two, three, or more patterns from among the 40 and invites
people to share their experiences with them. For example, a facilitator can introduce thepattern “Daily Chore” and ask attendees if they have such an activity and what it is; their
Daily Chore may be growing vegetables in the garden or walking their dog. When listening
to their peers’ stories, other participants may be able to envision their own daily chore or
be motivated to start doing something on their own. Thus, they can learn not only from thepatterns but also from the experience of others in light of the patterns.

Figure 8: Sharing experiences using the words

5. Workshops using Words for a Journey
Recently, pattern languages have been used as a media for narrative and dialog in various
domains (Iba, 2014a, 2014b, 2015). Words for a Journey also can be used in workshops toprovide participants with an opportunity to reflect on their experiences, talk about themwith others, and make a plan for future actions using the patterns from Words for a Journey.
In what follows, we describe some cases of workshops using Words for a Journey.

5.1. A dialog workshop for sharing experiences
The first case was a dialogue workshop for sharing experiences on supporting people withdementia and their families using the Words for a Journey cards (Figure 9). We held this kindof workshop for various groups of people, including care staffs, people from industries,
nonprofit organizations (NPOs), government agencies, educators, and students.
This workshop is usually held in the following process: First, participants were divided into
medium-sized groups, with each group sitting in a circle. The 34 pattern cards were shuff-

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led, and 3–5 cards were dealt to each person. Each person took turns revealing a pattern
card in their hand with which they have had past experience and then shared a story about
it with the group.
Next, each person chose and placed on the table a card from their hand that they wanted tohear stories about. If any person in the group had a story about one of these patterns, that
person would share it. A person could also choose a pattern that they had already experienced but about which they wanted to hear additional stories. When no cards remained ina person’s hand, additional cards could be drawn from the deck.
Every time we held the workshop, participants enjoyed sharing their experiences and looked positive and excited.

Figure 8: Sharing experiences using the words

5.2. Reading time for expressing positive feelings
The second case was that of a day care center, where Words for a Journey was used by elderly people to express positive feelings about their lives. Hideki Inada of Care Salon Sakura
held such reading periods at the end of their “orange café” (dementia café) because, he said,
the patterns in Words for a Journey were written with such gentleness and positivity that theelders were able to express positive feelings. In this setting, they sat in a circle, and he chosea pattern from Words for a Journey to read together (Figure 10).

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Figure 10: Reading time with Words for a Journey for expressing positive feelings in
the “Orange Café” (dementia café)

5.3. Workshop for enriching nursing education
The third case was nursing education. Prof. Kikuko Ota from the Faculty of Nursing andMedical Care at Keio University used Words for a Journey in her class “Developmental Issuesin Geriatric Nursing” to provide an opportunity for students to understand people withdementia (Figure 11).
The goal of this class was for students to understand the features of dementia and consider
concrete measures for supporting people with dementia. They divided into groups of six
and discussed from a nursing perspective their feelings about the problems of elderly people with dementia and their solutions using seven pattern cards from Words for a Journey.
Prof. Ota said that a result of the workshop was that students were able to deepen theirunderstanding even if they had little experience working with the elderly, because they
could learn from the experiences of other students. In the practical training after the class,some students were able to make use of their new understanding in actual communication.

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Figure 11: Workshop for Nursing Education using Words for a Journey

5.4. Idea generation workshop for inventing new products and services
The fourth case was a workshop to generate ideas for new products and services for people with dementia and their families. In the workshop, the patterns were used in the two
following ways as seeds for designing products and services to help people in the situations
described by the patterns: one was designing products and services to support actions leading to solutions and the other was designing products and services to correct conditions
so that problems do not occur in the first place.
We held an idea generation workshop with Words for a Journey for students in the Facultyof Policy Management and Faculty of Environment and Information Studies at Keio University (Figure 12). Few had previous knowledge about dementia, but they were able to learn
enough from the pattern language to conceptualize new tools for positive support.

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Figure 12: Idea Generation Workshop using Words for a Journey

6. Ideas for use of Words for a Journey by various
stakeholders
The use of Words for a Journey is intended not only for people with dementia and theirfamilies but also for wider audiences. This includes members of family associations, NPOs,
volunteers, care providers at medical and other facilities, people working for municipalities and other governmental agencies, educators, companies creating new products andservices to make the world a better place, and even people who do not yet have firsthandexperience with dementia.

6.1. For people involved with family associations, NPOs, and volunteers in
the field
People involved with family associations and NPOs and volunteers in the field can hold discussions for participants to discuss their experiences with dementia. Participants pick two,
three, or more patterns from the 40 patterns and invite people to share their experienceswith these patterns. For example, one could introduce the pattern “Favorite Place” to a
family association and ask participants if they have such a place and how they are using it.
Their “Favorite Place” may be a local coffee shop or the library. Then, one could ask them
why they consider this their favorite and how their lives would be different if they did nothave this place. When listening to their peers’ stories, the other participants will be able toenvision their own “Favorite Places,” which will motivate them to find a place of their own
if they do not already have one. Words for a Journey will become a conversation starter

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to facilitate comfortable conversations even among people who do not know each otherwell yet.

6.2. For people in caregiving and other medical fields
People in caregiving and other medical fields can create opportunities for people with dementia, their families, and others who use their facilities. In addition, their staff can engage
in constructive conversations with these people so they can learn from each other and thus
add value to the quality of the services provided. Words for a Journey is also useful whenpeople with dementia and their family members are experiencing difficulties. The patterns
will help them view dementia in a more positive light. These pointers, coming from a nonprofessional perspective, would be useful in a different way from the usual professional
advice.

6.3. For people working with municipalities and other government
agencies
People working with municipalities and other government agencies can use Words for a
Journey to help them talk to people with dementia and their families about how government
support can be improved. This will help them share and communicate contexts and problems and enable a constructive discussion.

6.4. For educators
Even if educators do not have personal experience with anyone with dementia, Words fora Journey will offer a good peek at what it would be to have the condition or be close tosomeone who does. For students at any level, from elementary school to college, knowing
the people of their community better will be a good experience and make them think more
about their futures, develop awareness of the issue, and cultivate a caring attitude toward
others.

6.5. For industry leaders
The problems and concerns faced by people with dementia can be used to help industry
leaders think about new products and services and reach beyond patterns such as “warmdesign.” However, many patterns can be a good starting point for ideas. If every company
were to take a role in resolving issues related to dementia, we would have a great foundation for a society that lives well with dementia.

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7. Conclusions
In this paper, we presented a pattern language for living well with dementia and ways to
use the pattern language. In order to involve many people, it is necessary to consider how
to use the pattern language in various contexts, and these opportunities and efforts todevelop the ways can become a trigger for encouraging behavioral changes. Also, we arestill searching for new words for living well with dementia, so we will build social networks
to enrich the collection of words. We think of this process itself as an activity for building asociety that enables living well with dementia. I hope that our study is a trigger for turning
the tide toward a dementia-friendly society.

8. Acknowledgements
We would like to acknowledge other members of our project: Aya Matsumoto, Tasuku Matsumura, Takehito Tokuda, Masahiko Shoji, Katsuaki Tanaka, Yasufumi Okui, Tsutomu Ikezawa, Mayu Nagumo, Minami Suwa. Also, we thank Taichi Isaku for translating the patterns
into English. Finally, we would like to say thank you to the participants for the help they
provided creating this book, including interviews and feedback.

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Editors: Peter Baumgartner, Tina Gruber-Muecke, Richard Sickinger
Book Design, Page Layout and Editorial Staff: Ingrid Muthsam, Wolfgang Rauterwww.purplsoc.org
info@purplsoc.org

Creative Commons Licence CC-BY-ND
creativecommons.org/licenses/by-nd/4.0
Printed in Austria
Krems, October 2016

Every effort has been made to make this book as complete and as accurate as possible,
but no warranty or fitness is implied. The information provided ist on an „as is“ basis. The
authors and the editors/publishers shall have neither liability nor responsibility to any person or entity with respect to any loss or damages arising from the information contained inthis book. Responsibility for the information, licencing and views set out in their articles lies
entirely with the authors.

2Peter Baumgartner | Tina Gruber-Muecke | Richard Sickinger (Editors)

PURPLSOC
Designing Lively Scenarios
With the Pattern Approach of
Christopher Alexander