SIX VIEWS IN A BOX DIALOGUES ON EVERYDAY LIFE WITH ALZHEIMER´S
DESIGN RESEARCH: Design Research: Six Views in a Box - Dialogues on Everyday Life with Alzheimer’s Published and printed in Denmark 2011 by The Danish Design School Press Copyright The Danish Design School Press Philip de Langes Allé 10 DK - 1435 Copenhagen K Denmark www.dkds.dk Edited by Thomas Binder & Eva Brandt Language revision by Shelly Rosenberg Layout by Morten Noer Andersen & Gudrun Risak Schou ISBN 978-87-92016-21-9
SIX VIEWS IN A BOX DIALOGUES ON EVERYDAY LIFE WITH ALZHEIMER´S
CONTENT 7: 9: 12:
Foreword Introduction Review meetings in Copenhagen & London
76: THE EARLIEST MOMENTS
14: DILEMMAS AS INVITATIONS
There is a very delicate balance between being just old or absent-minded and being in the beginning of Alzheimer’s disease
The purpose is neither winning nor losing Sofie Holm Larsen & Lilith Louise Lysgaard Hasbeck
30: MAINTAINING A RELATIONSHIP 60: HAPPINESS AS MEDICINE
What effect does it have on the relation between a person with Alzheimer´s and his/her relatives, when they are cut off from a shared past?
We had to think out of the box in order to create one
Mikkel Straarup Møller
Rie Maktabi Grue & Suzy Attah Mikkelsen
46: STORYTELLING How can pictures be used as a bridge of communication? Emmy Linde, Nathalie Hedin & Johanna Paulsson
88: MEMORY AND TIME Perhaps time is linear, but our memory is a power that can jump through time? Gudrun Risak Schou
FOREWORD This book is a report from a class on design research at the Danish Design School
Ten students had ten weeks to conduct design research based on approaches, methods and techniques from co-design focusing on the Alzheimer’s disease as experienced by people with Alzheimer’s, their relatives and close relations, and professional caretakers. Alzheimer’s destroys brain cells, causing memory loss and problems with thinking and behavior severe enough to affect work, lifelong hobbies and social life. As Alzheimer’s is a fatal disease that affects many people, there is a strong interest in finding ways to better understand the consequences of the disease, spread the knowledge to more people and diagnosis the disease as soon as possible. The class was partly sponsored by Johnson & Johnson, an international pharmaceutical company. The students also collaborated with the Danish Alzheimer Association. Future designers need competence in co-design. Just as important is the need to establish various formats for how to maintain the research results and make these a valuable asset for further inquiry. Thus, the outcome of the class is a box that can be used by Johnson & Johnson and other professional organizations in a userdriven approach to explore and learn what it means to identify and admit that a person has Alzheimer’s. Apart from making contributions to the common box, the students have written reports in which they reflect on their work both in relation to the design research process and the outcome. This book is an edited version of their reports. Our hope is that it can be an inspiration for other people. Thomas Binder, Eva Brandt and Morten Noer Andersen The Danish Design School, March 2011
INTRODUCTION It’s an illusion to think that you can subtract yourself in the equation. This is what co-design is all about. It’s about participation rather than observation.
Final presentation The results from the class were handed over to five Johnson & Johnson representatives on January 25th 2011. Six people from the Danish Alzheimers Association also participated in the full day event.
10 WEEKS OF DESIGN RESEARCH This book is co-written by 10 of us, students from the Danish Design School. Most of us were in our third semester in the Bachelor program; one student was in the Master’s program. We had different backgrounds and interests in relation to our future lines of specialization, but a common interest in learning more about design research. Thus this class was chosen among a large number of other classes that we could take. The class took place from November 8th 2010 to January 28th 2011, and has been partly sponsored by Johnson & Johnson, an international manufacturer of pharmaceutical, diagnostic, therapeutic, surgical, and biotechnology products. We also had help from The Danish Alzheimer’s Association as well as numerous concerned individuals. All involved share a common interest in the improvement of everyday life with Alzheimer’s for which the outcome of the class is also publicly available. The outcome is a box with resource materials that contribute to a wider awareness and openness towards the disease and its challenges by getting close to the sensitivities of everyday life and how it could be different. Each student, or two students together, investigated a subtopic. We would like to thank everyone involved for their openness and collaboration. Without them this project would not have been possible! BEING COMMUNICATORS The challenge for this class has been to understand Alzheimer’s disease, and understand what the needs are of the patients and their relatives. There is a clear problem regarding the disease around getting diagnosed in time so that medical treatment will help. The pharmaceutical industry is aware of this problem, as they devel-
oped medical treatment that can help patients delay the progression of the disease, but yet they cannot treat enough patients in time, because the patients are getting diagnosed too late. In Denmark, about 80.000 people have dementia, which means that the everyday life of about 400.000 people (families and near relations) are affected by various forms of dementia (= more than 10% of the Danish population). Alzheimer’s disease is the most common form of dementia. 5.3 million Americans have Alzheimer’s. It is the seventh leading cause of death in the US. The ambition of this class was to develop an understanding of Alzheimer’s, not as a doctor, anthropologist, scientist or journalist, but as a communicator connecting the knowledge intensive enterprises (represented by Johnson & Johnson), and the presence, sensitivity and appreciation that are experienced among the affected group of people. CO-DESIGN Co-design is a design research approach that implies involving different stakeholders actively as collaborators in the design process to draw from the shared knowledge. By mobilizing and involving all stakeholders both in exploring what is well known and in sketching what is new, the accumulated knowledge and experience hereof may bring to light new insight, that couldn’t have been obtained otherwise. What is important is to maintain this dialogue during the whole process and to keep the user feeling that he or she is an important part of the design team. This is what makes it a co-design project. When designing with the user instead of for the user (co-designing) you need to get the user to participate and be active through the whole process. When working with events and repeating meetings with your future users, you, already from the start, need to think about how to explain your thoughts, prototypes and ideas. That is something that otherwise would be waiting until your last product is finished. This helps you, as a designer, to rethink the way you work and also helps you to reflect on your design even earlier than in an ordinary process. We found it to be easier than expected to get people to participate
through the whole process. They all had their own reasons for participating, reasons like helping others in the same situation, sharing their story for others to be inspired and so on. These reasons were enough to convince them to be a part of our design team. What is hard as a designer in a co-design and research based project is to let go of control, to take a step back and to see what comes out of events, interviews and workshops, and then take it from there. When working and meeting with people you will never know the outcome but you can direct the group to the field you want to work in. REFLECTIONS Today the concept of designing is complex and the term is being used in many ways. We have found great interest in working with design research and the co-design approach, since it implies interdisciplinary approaches and suggests a broader and more empathic view of design as a method and a tool. By working with real people and real situations, as designers we have gotten a more complex and realistic perspective of our future work and we appreciate this.
Co-design The knowledge produced occurs in the meeting or the
When looking back on the first week in this class, we can see how much our project and we have progressed. From being unsure and confused about the purpose and the goal of the project, we can now look back and acknowledge the qualities in an exploratory inquiry that imply openness and open endings. Since the key in our methodological approach has been to constantly progress and prototype, the journey is an ongoing process. We have learned how knowledge is gained. In order to produce knowledge, an interaction between us and our collaborators has to take place. To walk into other people’s lives, demands something from us as well. It’s not only about extracting knowledge from the informants. It’s important to be aware that the knowledge produced occurs in the meeting or the interaction. Rie Maktabi Grue, Monika Havn, Nathalie Hedin, Emmy Linde, Lilith Louise Lysgaard Hasbeck, Sofie Holm Larsen, Suzy Attah Mikkelsen, Mikkel Straarup Møller, Johanna Paulsson and Gudrun Risak Schou. Students at The Danish Design School
REVIEW MEETINGS IN COPENHAGEN & LONDON
Discussion at the final presenFirst Skype meeting with Tina
Dialogue exhibition at
from Johnson & Johnson
The Danish Design School
Review at Live Work, London
tation for Johnson & Johnson at The Danish Design School.
November 19th 2010.
December 15th 2010.
January 7th 2010.
January 25th 2011.
The class took place from November 8th 2010 to January 28th 2011, and the process was divided into three overall phases with interaction of people with Alzheimer’s, their relatives, professional caretakers and representatives from Johnson & Johnson and The Danish Alzheimer Association in each phase.
Project framing and
Finalizing formats for box
based on co-design
content and production including writing reports and oral examination
November 12th – 15th 2010 10 field visits were carried out collaboratively: Five to places, activity- and advice centers,
and a company designing
Each group writes a program
December 17th 2011
products for seniors. Five visits
and a problem statement, and
Dialogue exhibition in relation to
with individual that either had
investigates their theme in
the research project LEV VEL
Alzheimer’s themselves or
more depth through developing
where people working profes-
January 21st 2011
were relatives to people with
and using various dialogues
sionally with senior citizens
Students hand in their project
January 28th 2011
Johnson & Johnson.
provide feed-back on our work.
reports for assessment.
Sharing and clustering
November 19th 2010
December 15th 2010
January 7th 2011
January 25th 2011
Identifying themes and creating
Meeting with representatives
Dialogue exhibition where all
Review meeting at the design
Final presentation and hand-
groups based on the interests
from Johnson & Johnson face-
involved and other from the
consultancy Live Work in
ing over the results: Full day
in themes to explore further.
to-face and via Skype to pre-
Danish Alzheimer Association
London where a representative
meeting with 5 employees
sent initial ideas for the box.
and others are invited to com-
from Johnson and Johnson
from Johnson & Johnson and
ment on preliminary results.
6 people from the Danish Alzheimer Association participated.
â€œWhen I finally decided to put my demented husband in a nursing home, I had the feeling that I had cheated and stolen a new lifeâ€?
DILEMMAS AS INVITATIONS
DILEMMAS AS INVITATIONS The purpose is neither winning nor losing Sofie Holm Larsen & Lilith Louise Lysgaard Hasbeck
DILEMMAS “When I finally decided to put my demented husband in a nursing home, I had the feeling that I had cheated and stolen a new life.” - Jutta, whose husband has Alzheimer’s. This quote was a catalyst for us to think about dilemmas. This, and other stories from our field visits, revolved around dilemmas. We wanted to dig deeper into these lived experiences to see if there was a way to help people who were dealing with dilemmas similar or distinct from the ones we had been told so far. What struck us was that dilemmas function as a common language. We can relate to the situation of Jutta even though we might not know what it feels like to put a husband in a nursing home. This is possible because we can relate to her situation of being in the middle of making a difficult choice. This is something all of us have to do all through our lives. The ability to speak a common language is a great quality in the concept of the dilemma. It might seem as if we are all very different, but maybe we have actually been in similar situations. What we are investigating is not in particular the past of the people who are affected by Alzheimer’s, but instead their possible actions and ways of progressing seen in the light of their former experiences. Our face-to-face meetings are really valuable for us A picture from the dialogue exhibition of Jutta and Lilith.
What if doing nothing is not an option What if the everyday dilemmas were invitations to progress? We use dilemmas as a constructive dialogue tool. We invite the different stakeholders to participate in the process of developing the tool. Our prototypes are not just representations of our ideas, they are invitations to participate in the development of them. The fact that we are looking for improvement and innovation underlines the
importance of this: we need to collaborate, look forward and see future scenarios. This is why we have chosen to use the word invitations when describing the use of dilemmas. THE DILEMMA CARDS Our very first prototype was a set of cards. These contained the authentic stories we had collected from our first field visits, a question and two answering options.
The first prototype The dilemma cards including an authentic quote and a dilemma question.
The cards were meant to open up a dialogue. We wanted to engage the participants by using actual stories, encourage them to put themselves in a specific situation and make a choice. Even though the stories were personal, that was not the key point in our cards. We wanted to create a window for mutual understanding by reflecting upon situations instead of specific personalities. We made eight different dilemma cards. One of them asks the following: “Imagine you are the spouse of a demented person and you begin having difficulties handling everything. Would you place him/ her in a nursing home for your own sake?” Although you are encouraged to elaborate on your answer by explaining why that would be your choice, the direct questioning in the game cards forces the players to consider the options. PROTOTYPING AS A RESOURCE Our way of prototyping is different from the traditional way. Traditionally, the research and sketching phase goes for a while before the prototype is produced. Also, you see how prototypes are often made with the purpose of testing the functions and editing the details of the product. We have been prototyping all along in our process; our different prototypes have been indispensable tools for us. The physical object is important in creating a dialogue. There can be a big difference in what we say and what we do, but by integrating the prototype in our research and letting the stakeholders interact with it, we can actually explore future situations. By prototyping, we facilitated dialogues that invited different views upon a topic. Each of us cannot know everything, but by staging a situation in which we can share our respective experiences, we build a bridge that connects the gaps in our knowledge. Since the face-to-face meetings and authentic stories are so valuable to us, it has been essential for us to give the people we met something in return. We thought of how to edit the first prototype so
that it would be desirable and fun to interact with. To turn the cards into design games seemed like a natural next step to expand our study of dilemmas and choices to encompass an action for the user within a certain universe. Game playing creates an informal atmosphere within a protected, make-believe universe, and includes certain prearranged rules and roles that, together with various kinds of game materials, frame the game universe and the game experience. Prior to any game, a contract is established; when entering the game, the user becomes a player and a contract of fiction and non-fiction, of playfulness and seriousness is set, allowing the players to journey within a protected universe in a casual and intimate atmosphere. The balancing of seriousness and playfulness as well as the friendliness associated with games has been important for us when choosing design games as a workable format. Every game holds its challenge, but when playing design games, the purpose is neither winning nor losing. The challenge in our dilemma game revolves around choices, options and progress, using empathy and imagination to answer and reflect upon dilemmas and acting upon the choices, thus progressing both mentally and visually in the game. Each of the dilemma questions opens up a “what if” world by giving the player a role and a choice, so that he or she has to act in accordance with that imagined character. Using our natural ability to put ourselves in someone else’s shoes helps to constitute the challenge of the dilemma game. PLAYING THE GAME WITH BENT AND LENE In our second prototype, the dilemma cards evolved into a dilemma game. We tried this prototype out with Bent, whose wife has Alzheimer’s, and before having finished the first question he stated, “If you want to ruin the game, you go ahead,” implying that he surely did not want to write on the board. As a compromise, we wrote down what he said during the session. We learned that the prototype must be an invitation engaging people to interact; it has to be open for investigation and negotiation and not a finished and closed item. Bent’s criticism and our experiences from trying out the game were transformed into our third prototype of the game, which we played with Lene. We managed to integrate the possible replacement of pieces of paper on which the answers and reflections could be written, leaving room for simply throwing the paper out and starting over.
CRITICISM ON HOME GROUND It was important for us that Lene and Bent felt free to question the game in all its aspects during our game-playing sessions. When Bent read the dilemma concerning whether or not you would put your demented spouse in a nursing home for your own sake, he proclaimed, “This is a stupid question!” but nonetheless continued talking about how he and his wife could bear living together. We were grateful that he felt free to let us know what he thought about the game and that we had not pretended to know our audience so well that we could have chosen, on their behalf, which questions they would relate to or even know how they would react. There is a chance they might not even have known it themselves beforehand. When Lene read about Karin, who has experienced her siblings and mother with Alzheimer’s, and now has the diagnosis herself, she sincerely said, “To my surprise I am very affected by this question.” DIFFERENT SITUATIONS, COMMON SUCCESS The game worked well both for Lene and Bent even though they are in completely different stages of their life when it comes to the disease. Bent’s wife’s Alzheimer’s is advanced and hence he is in the middle of the course of the disease, while Lene’s father passed away over a decade ago and she has had time to cope with the difficult situations and to reflect upon the process.
Visiting Bent We played our second prototype of the dilemma game with Bent, whose wife has Alzheimer’s.
After our game playing sessions, both Bent and Lene wished to play the game again and to act as facilitator in similar future situations. Bent had in mind that the game would be useful in his relatives’ group and at his wife’s nursing home, while Lene wanted to play the game with her family over Christmas. We cannot say exactly why the game embraces these differences, but our assumption is that it has to do with the creation of shared language articulated through the dilemma game. DEFINING THE TARGET GROUP With a fourth prototype: a simplified set of game cards that emphasized simple drawings instead of words, we wanted to try the game with a different group of potential users. We went to Bakkehuset, a gathering place with social activities for people with Alzheimer’s. The cards were simple and the questions short without any quotations or unnecessary information. We tried using the cards as a dialogue tool in a gathering of roughly ten people, but almost immediately discovered that the conversations were difficult to facilitate and that silence was a dominant part of the dialogue since no one was eager to utter their opinion.
Meeting Lene We played our third prototype of the dilemma game with Lene, whose deceased father had Alzheimer’s.
The game had worked well within settings where relatives played the game regardless of where they were in the progression of the disease, but we were forced to acknowledge that the game did not work well within groups of people with Alzheimer’s. PROTOTYPING THE DESIGN GAME AGAIN After playing the second and third version of the game with Bent and Lene, we found that the game lacked the ability to capture the stories and reflections it had facilitated. Lene could both remember how devastating it was for her family and her mother in particular to put her farther in a nursing home, but she could also remember how releasing this felt. She told us a story about how her father had suddenly asked her to dance with him. This was a very memorable and positive situation for her, even though the circumstances were not perfect or what she had expected. We gathered further important stories, during our game sessions, and we thought it was a shame not to communicate these. DOMINOES We came up with an idea that was inspired by the traditional dominoes. We thought that dominoes as a format could be interesting to work with because of the tangibility and because it is a game that invites you to make certain patterns and build something from very few materials. The fact that dominoes can be played in many ways e.g. by matching the dominoes or by placing the dominoes in rows and making them fall in a line, creates an informal atmosphere around the game, which also caught our attention.
Visiting Bakkehuset We played our fourth prototype of the dilemma game at Bakkehuset, a social gathering place for people with Alzheimer’s.
The new prototype took the form of oversized dominoes including our different authentic stories. We added different visual elements to the game as well. Photographs and drawings were our visual interpretations of the answers that Lene and Bent had given us. For instance, we made a card with a simplistic hand-made drawing of the footsteps of two persons to visualize a story Bent had told us about always having to be two steps ahead when your wife has Alzheimer’s. We chose a simple aesthetic with the purpose of creating an open and flexible game. Even though the visual cards were made on the basis of the stories Bent and Lene had told us, they could be interpreted in many ways. Our fourth prototype We brought a simplified set of cards to our meeting at Bakkehuset.
THE DIALOGUE EXHIBITIONS We presented the different games at the two dialogue exhibitions/ workshops. In dialogues with different people, we found that many of them liked the tangibility and the visual elements of the dominoes as they made the game more fun and engaging while stimulating different senses. We liked the openness of the game but we also discovered that it was somewhat confusing. In our version of the dominoes, you did not know where to begin or end, and we observed how very few of the stakeholders at the workshop did actually interact with the game pieces. We felt that we had made two prototypes, which had different qualities and different problems, and we were divided between the two games. On one hand, we wished to keep the tangibility of the dominoes, but on the other hand we did not want to let go of the dilemma cards since we had experiences that the use of actual dilemmas and situations made it easy to relate to the questions without being unnecessarily vulnerable or without putting themselves in the spotlight. Lene aptly put it this way when describing the quotations:
“You are suddenly not alone. It makes you venture to do more” We decided to combine the two games. The new “game box” ended up containing a game board with a fixed path with a beginning and an end. It had dilemma cards with both quotes and questions and different answering cards including a quote, a photograph, a drawing or a blank card on which you could write down your own answer. You start the game off by selecting a dilemma question card and placing it on the board. The next player answers the question by choosing and placing an answer card next to the question card. Afterwards, this player chooses a new dilemma question card and the game continues until you have built a bridge of cards and reached the final question. In this way, we both framed the situation and gave access to a “bank of answers” that we were hopeful could generate a dialogue. MOVING ON WHILE LOOKING BACK Reviewers pointed out that the goal of the game would become strengthened if one could somehow capture the tangible outcome that might be called a reflection journey. We discussed whether or not to include a disposable camera as an invitation to capture the personal dilemma path. Instead, we ended up drawing a camera at
Our fifth prototype In order to illustrate the game at the dialogue exhibitions, the oversized domino-like game pieces were put on the wall.
the final question to invite the players to take a picture with their own camera. Having defined this capturing of the path as the goal of the game, we needed to take a step backwards in our process and simplify the game. We changed the game board to a simple squared surface. This was earlier discarded because we wanted players to move through all of the dilemma questions. We revised this for two reasons: The length of the journey, and the choosing of the questions. “It can be a weary journey because it activates something,” Lene told us. She suggested that we could somehow let the players regulate themselves about how long a journey they wanted. She also suggested letting the players choose their own questions, as Tina from Johnson & Johnson had suggested: “Some will speak to you and some won’t.” The simplified design of the game board resulted in a path that was not prearranged but open for variety in form and length. Accordingly, you could say that we moved on by looking back.
Our sixth prototype and the sketches that it’s based on We decided to combine the domino game and the previous dilemma games.
A GAME FOR WHOM? “...it is amazing when you aim that broadly with success,” Lene told us. Communication theory often teaches us to narrow down the group of future users as much as possible, but here the flexibility of purpose and settings has been significant to us; we have developed a game with the openness as an intention. The final game primarily targets relatives of Alzheimer’s patients, but we are open to new groups of users who might benefit from playing the game e.g., caretakers, people with an interest in the disease, as Lene wondered: “At an earlier stage, who knows what you could do then?” The final dilemma game has rules that revolve around the path taking form by choosing a question and then an answer. This is an important part of the game but the dilemma game is still open for new interpretations and ways of playing. We have developed it with an eye to allowing for a great deal of personalization; you are able to create the path for your own reflection journey, write your own answers and your own questions, too.
The seventh and final dilemma game This game is a result of a long journey and combines different aspects of the previous prototypes.
The final dilemma game comes in a small box. A stack of dilemma games.
“To us it’s all about having a good day, here and now”
MAINTAINING A RELATIONSHIP
MAINTAINING A RELATIONSHIP What effect does it have on the relation between a person with Alzheimer´s and his/her relatives, when they are cut off from a shared past? Mikkel Straarup Møller
During the very first week of the project we collectively attended a monthly informational meeting on Alzheimer´s and dementia, organised by the Danish Alzheimer Association. Some people were seeking practical advice about certain situations, but most of the questions dealt with emotional issues. During the session an elderly man in despair asked a question, which would turn out to be a cornerstone of my project. He asked:
“What good is it anyway, to go travelling, when my wife doesn’t remember any of it after two weeks?” What I found interesting was not the question itself as much as the reason he was asking it. This was a man who still loved his wife, and wanted to be with her despite the grave impact that her Alzheimer´s had on her. But he was also having trouble coping with the changes to their relationship, and sounded as if he was about to give up. I have since learned that the burden of dementia is usually a huge, to some unbearable, emotional and psychological strain on relations, especially close relations such as marriages and family relationships. My intention throughout this project has been to explore the issues of coping with Alzheimer´s in relationships, by examining: What effect does it have on the relation between a person with Alzheimer´s and his/her relatives, when they are cut off from a shared past? As a person’s personality changes over time, because of Alzheimer’s, what are the emotional consequences to the relationship and to the relative?
CREATING A DIALOGUE My first visit was to Pedro, a man with early diagnosed Alzheimer’s with fellow student, Monica. We met him in his home. He was very hospitable, but also very sparse on information. Our focus for the meeting was mainly to point out differences to his life now and before Alzheimer’s, and in what ways the disease affected him. But after an hour’s talk, we left almost without any useful information. He wasn’t noticeably affected by the disease, and his description of his everyday life seemed as normal as any. From the visit, I learned that in order to better involve and engage the informant, the basis of the dialogue would have to be looser and less pre-determined. Next, I, and fellow student Gudrun, got an appointment with Henning and Kirsten, a 73-year old retired blacksmith suffering from Alzheimer’s for the past seven years, and his 69-year-old wife Kirsten. To create, guide and record a dialogue we made a workbook providing room for improvisation, deviation and unexpected turns. It had a “homemade” and imperfect look to show that it did not have to be read or filled out in a specific way.
Henning A 73-year old retired blacksmith suffering from Alzheimer’s
Those are the main questions I have set out to explore, not directly in order to solve a specific practical problem, but to illustrate an issue that I think is important to be conscious about, in order to better understand how dementia or Alzheimer’s affects the lives of both the demented person and their relatives and the relations.
Kirsten was very open-minded toward us and everything we asked her about. She told us she had decided to be open and honest about their situation. Henning’s Alzheimer’s has given him a speech impairment. He didn’t speak a lot, but when he spoke now and then, she would let him speak without interruptions.
for the past seven years.
We introduced the workbook, and explained how we imagined it would be put to use. With us, we had a kit containing pens and pencils, scissors, post-its of different colors and glue. We dwelled on one main topic at a time, using the quotes, illustrations and pictures from the book as inspiration and guides for the conversation. As Kirsten spoke, we used the blank pages in the book to write down quotes and passages from her stories, linking them to the current subject of the story, e.g. a picture of a car key.
The workbook We introduced the workbook, and explained how we imagined it would be put to use. With us, we had a kit containing pens and pencils, scissors, post-its of different colors and glue. We dwelled on one main topic at a time, using the quotes, illustrations and pictures from the book as inspiration and guides for the conversation.
“WHERE THERE IS LOVE, THAT’S WHERE YOU LIVE” One of the things in the workbook was an illustration of a man staring confused and lost at some street signs. Kirsten told us about how she has made sure Henning finds his way home when he is out walking alone:
“These buildings all look alike, and some times even I end up at the wrong house. So I bought these heart-shaped stickers and put them up on our main entrance and on our door. Now I tell Henning, “Where there is love, that’s where you live.” The most important thing to Kirsten, she says, is that they have a good everyday life together. Picture from the video.
Kirsten had several other examples of homemade ways to outsmart Henning’s memory loss, but something I found even more interesting and compelling was the insight Kirsten provided in the complex emotional challenges of being with a person who is no longer the person he used to be, because of Alzheimer’s. She still loves him and this love is what keeps her going. But is love unconditional and an unlimited resource in Kirsten? No, apparently certain conditions are crucial for Kirsten’s love for Henning to thrive: First of all, she has to keep respecting him. To respect him, she must not perceive him as unable to manage his own affairs, even if he sometimes is. To keep from doing that, she insists that he carries money, that he makes his own choices and that he gets to do things on his own. She says that in reality he is not really able to make choices, but even so, she insists on his authority and respects his decisions, however stupid they may seem. It is also important for Kirsten to feel close to Henning by experiencing the good parts of the old Henning that are still there. She arranges her everyday with Henning to have as many good moments together as possible. In their case, Henning is most untroubled by the disease with as few demands as possible. So Kirsten tries to create an environment with as few demands for Henning as possible. The most important thing to her, she says, is that they have a good everyday life together.
INTRODUCING VIDEO Meeting Kirsten and Henning was a life-confirming experience to me. I wanted to know more about her emotional “survival strategies” and the conditions required to keep her love for Henning from withering away as the distance between them grows everyday. The workbook was a good way of collecting data from the visit; but as a tool for passing on this data to a third party, it was not good. I decided to ask Kirsten permission to set up a new session with her and Henning, only this time bringing a video camera to record it. I got the chance to present the idea to Kirsten and Henning in person the following week at the dialogue exhibition. They were invited along with the other informants to see our results of the research so far. I sat down with Kirsten, Henning and their daughter Dorthe and presented my proposal. When asked why, by Kirsten, I explained that I thought it would be the best way to pass on her story to others. She asked if I meant like a documentary, and I told her I didn’t know yet how I would be using the footage exactly, but that I had been moved and inspired by the way she managed their life, and that I would like for others to see this. Kirsten told me she wouldn’t mind, but that I could only do it if Henning also thought it was OK. I agreed to call her the following day. She would present the idea to Henning in the meantime. The following day, Kirsten told me Henning refused to be recorded, but if I could do it with her alone, she wouldn’t mind, though she had one condition: She wanted to make sure my product would come to a use for the benefit of others. It would have to be more than just a communication experiment for use in my school project or for Johnson & Johnson alone.
At the dialoguge exhibition I decided to ask Kirsten permission to set up a new session with her and Henning, only this time bringing a video camera to record it. I explained that I thought it would be the best way to pass on her story to others.
ENCOURAGING DIALOGUE THROUGH THE USE OF CUE CARDS For my second visit at Kirsten and Henning’s, I created a new dialogue tool for guiding our conversation along as we were recording. I created a stack of foam board cards, each with something written or drawn on it. They were meant to be used freely to help the conversation along; it was hopeful this would inspire Kirsten to take it beyond the cues presented by me.
“Reflection” cards invited Kirsten to reflect on existential and emotional subjects relating to her life with Henning, containing single word topics such as “love,” “death,” “hope,” and so on. “Referring” cards contained hints referring to specific stories and thoughts Kirsten had shared with us at the previous session. Some of the cards contained specific quotations from Kirsten, while others were less self-explanatory and more open-ended, e.g. the symbol of a heart referring to Henning being guided home by the heart stickers. “Situation” cards were invitations to describe and reflect on specific situations and topics such as “the art of keeping up the good mood,” “A difficult situation,” “The bright side,” “keeping in balance,” and so on. We first went through the planned schedule of the session to establish a zone of confidence. I made Kirsten know that I wouldn’t be showing any of the recorded footage to others without her clearance. Henning had changed his mind since last we spoke and decided that I could film him if I wanted to. I placed the small video camera on a tripod on the table almost in front of Kirsten. Fortunately, she did not seem affected by it at all. The thoughts she shared during the session were at least as personal and emotional as without the camera. The cards were good at keeping the dialogue flowing, and we got around a lot of situations and thoughts on the consequences of Alzheimer’s to their life and relationship. I ended up with more than four hours of raw footage containing mostly dialogue.
ENCOURAGING DIALOGUE THROUGH VIDEO After the recording, I went through the material and created a rough draft of around 20 minutes of footage that I found relevant. Then I arranged a third session, this time using the footage of Kirsten speaking as the basis for our further dialogue. I set up the camera and started recording as I showed her the draft on my computer. Her reaction to the movie was generally positive, but also sparked a discussion. She thought I ought to include Henning in the video, showing some of the situations described such as Kirsten having to help him get dressed for a walk. She also reflected on her own statements, further explaining what she meant, and adding to the nuances, for example by emphasizing how she feels lonely sometimes, and why. Kirsten and Henning also let me follow them around for a day, discretely recording them in everyday life situations like shopping, walking, eating and preparing food.
After clearing the footage with Kirsten, I created a five-minute draft for a presentation at the company Live Work in London. I briefly introduced my idea of passing on Kirsten’s story, and went on to show the movie snippet of Kirsten talking about the importance of mutual respect in her and Henning’s relationship. To sum up the feedback I received, the viewers had trouble seeing how a “documentary” would be useful for a company such as Johnson & Johnson. In its current form as a standalone documentary style presentation of Kirsten and Henning, it did not seem to function as a resource or tool for neither obtaining new information on the subject, nor communicating with patients or relatives nor actively contributing to the development of design solutions. In other words, I would have to be clearer about the purpose of whatever I chose to put in the final box, and be more specific in defining my target group. With this in mind, I began rethinking the possibilities of the video footage.
VIDEO AS A MEANS OF GUIDING DIALOGUE AND PASSING ON INFORMATION Using the video format as a narrative, in a presentation for example, is a powerful and effective way of bringing the viewers close to the subjects. When Kirsten saw the rough draft edits of yesterday´s recordings, it created a sort of loop effect. She would comment on what we talked about last time and come up with new stories. In this way recording her and playing it back to her, each time generated more information. Kirsten’s example could prove useful as an inspirational example to encourage spouses in similar situations to reflect on the condition of their own relationships and contribute with new insights and survival strategies. If this new data is somehow collected, a “knowledge pool” may be created along the way.
New information Recording Kirsten and playing it back to her, each time generated more information.
To promote this, the product of my research is an interactive DVD containing approximately 15 minutes of video material from my recorded sessions with Henning and Kirsten. The video is divided into three chapters, each revolving around different themes, and for each chapter there is a slide presenting a few questions relating to the theme. In addition to the DVD itself, the packaging includes a booklet presenting its content and purpose, and provides instructions of use. As a stand-alone product it is important to make sure my contribution to the box is self-explanatory; the booklet provides this. The DVD and booklet can be used as a dialogue tool. A facilitator introduces the video and plays the first chapter, in which Kirsten and Henning are introduced and Kirsten recalls when Henning was diagnosed. When the chapter is finished, the facilitator introduces questions such as “How did you react to the diagnosis?” The process is repeated for the remaining chapters. The facilitator records or takes notes from the conversations, collecting the relevant knowledge.
“Suddenly I’m the grown up who is in charge of my mother. No one is taking care of me.”
STORYTELLING How can pictures be used as a bridge of communication? Emmy Linde, Nathalie Hedin & Johanna Paulsson
There are over 30 million people in the world who currently have dementia, according to Alzheimer’s Disease International. Today, there is no cure for the disorder, but scientists are working on a medication that causes the process to slow down. But, to be able to take the medication in the future, when it gets released, the symptoms will need to be discovered in an early stage of the disease. After each year that passes, people with dementia forget more and more. This creates a distance between the patient and his/her network. This distance often results in a gap between the two. People don’t know how to handle the situation with either the patient or the relatives. Many relationships disappear when they are needed the most. During our visits and interviews we’ve been told, or have seen, how interactions and communication between the patient and their relatives can be handled. One woman and her mother used to dance to Sinatra’s music. Another story tells us how photographs can be a bridge over the gaps of memories. What also became clear was how the caretakers often had to kick off conversations and take the initiative to activate the patient, because when the process is far-gone, the person who suffers from it remains passive. From all the stories we’ve collected the importance of creativity in solving the communication gap has been shown to be a high priority.
The changing relations Relationships change and communication gets harder. How can the relationshops between a person with Alzheimer’s and his/her relatives/ caretaker be strengthened?
How can the relationship between a person with Alzheimer’s and his/ her relatives/caretakers be strengthened? Can pictures be used to create a bridge over this communication gap and how can this be accomplished?
Creativity in storytelling From all the stories we’ve collected the importance of creativity in solving the communication gap has been of high priority.
At Aalholm Daycare During our first visits we got to know the patients at Aalholm Daycare by being part of their daily activities.
LOOKING FOR CUES We received an invitation to visit “Aalholm Daycare.” They have activities for people who come during the day. As we arrived most people were sitting and eating at a long table and the atmosphere was positive and happy. We noticed that the people working at Aalholm Daycare used different “start-ups” in order to begin conversations; for instance, music and different concrete objects in their vicinity, the fine old coffee cup, and birds singing. It seemed like both staff and the Alzheimer’s patients were looking for clues to have something to talk about. We saw Agneta sitting on the sofa without many people present, during a song session. Several times, she tried to find her glasses, without any luck. Suddenly she started to sing, remembering the whole text by heart. We wondered how she’s able to improvise singing the whole thing, without any problems. Is this because she sang/ listened to this song many times before the disease and remembered without “thinking?” Is it because she has personal memories connected to the song?
“It seemed like both staff and the Alzheier’s patient were looking for clues to have something to talk about.” Margot loves to play bingo. But when one employee asked her if she won, Margot stood still and thought. She didn’t remember, but she suggested that we take a look in her purse. There we found the chocolate she won. She was then happy and smiling. For the remainder of the day she would now and then sit quietly thinking and afterwards looking in her purse to check. Each time she found the chocolate she became very happy. It is striking how she isn’t able to remember, but still has some kind of logical context that makes her check in her purse. These experiences sum up how different situations that occur can be hard, and how people find different ways to conquer them. You also get an awareness of how the situation changes and how individual it is because of interests and previous experiences.
REMEMBERING HER FARTHER At a café, we met Lene. She told us what it was like to live a life with Alzheimer’s, through the eyes of a daughter. Her father had passed away many years ago. This meeting was a new way for her to tell her story and to reflect upon the years that passed. Not too long ago, Lene finished a scrapbook with her mother, which was about her father, Erling. “In the beginning everyone in our city thought my father had gone crazy,” she told us. “But we knew that he wasn’t crazy; something was simply wrong. It was both a relief and a burden when we received the news that he actually had Alzheimer’s.”
Meeting Lene When meeting with Lene for the first time she had brought photographs, articles and more about her father, Erling.
It was a burden for her mother to keep the family together. She didn’t want to trouble anybody with her problems so she never asked for help, and no one offered to help. Lene thought that people around simply were too afraid and didn’t know how to handle the situation. Even though Erling didn’t remember anything in the end, he still had his moments. Lene told us about a magazine that her father used to love. It didn’t matter at what stage of the disease he was, but every time they showed him that magazine, he looked at the very same page, which he could stare at for hours. “Something with that specific picture got through to him,” she said. It was some kind of comfort that he still had something that he could hold on to. Erling was very absent in the end, but Lene still remembers the day when he put his hand on her shoulder and invited her for a dance. She believes that he thought that she was her mother, but it still is a loving memory to be near her father and feel his spirit again when they were dancing. Finally, we asked Lene if following her father’s disease and eventually his death, had changed something specific in her way of living today. She answered that the most evident change was her perspective of life; she’s far more present-oriented today than she was before.
A MEMORY GAME When a person is diagnosed with Alzheimer’s, his/her close network is often unable to cope and disappears. Our hypothesis is that the problem is based on fear as well as lack of knowledge of how to deal with the sickness. So how can we help prevent this distance from being created? We wanted to help strengthen the relationship between the person with Alzheimer’s and the people close to him/her. Our goal was to do this by exploring the possibilities in creating some kind of game or activity that the two could enjoy together. We thought about a game that we both used to play when we were children, called “The Memory Game,” in which you’re supposed to turn a set of cards that had been duplicated and then find the pair with the same motif. This is both a good way to practice your memory, and have a good time at the same time. The mind-memory game should be presented with different kinds of pictures that could be changeable based on which state the person with Alzheimer’s was in. Our main idea was that the cards would have slots that could fit pictures in the common size of 10x15 cm, so you would be able to place your own pictures there and make them personal.
If the person is in the first phase of the disease, you could make the game a bit harder and place pictures from a trip you went on in two slots – maybe a picture of the flag of the country, and the national dish − then turn them over and the person has to find and connect those two pictures. If the patient is far gone in the disorder’s process, it might be enough to simply have two cards with only the same color and place them turned up. To avoid the feeling of frustration and failure, the cards should be turned up once the memory is failing. The importance was in making the players feel successful and motivated to continue playing.
Pairing pictures from your own personal photalbum could be a starter for a conversation.
PLAYING GAMES We went out to Aalholm Daycare to try the memory game with pictures divided into groups of situations, objects, symbolic, and related pictures. During this visit, three Alzheimer’s patients were playing at the same time. At first we paired the pictures like an ordinary memory-game using the situation, object, and symbolic pictures. There were also pictures that could fit together in different ways: different kinds of shoes, wedding things and so on. The next game was “different kinds of wedding picture connections” consisting of pictures like a heart, kissing, a couple getting married, and a bride’s bouquet. We also wanted to see what would happen if we got the opportunity to use some headlines. We put headlines on the table like “a good day,” and “things I like.” Then, they could choose pictures to put into these categories. Could this be a trigger to conversations and in this way could we get coherence?
Telling stories and saving them in a booklet.
Pairing the pictures went smoothly and seemed to be quite easy for all of them, but the pictures gave no starting point or better help for taking the initiative to communicate. The headlines idea gave us some more information of personal things important to them, but unfortunately no further discussion continued. Discussing at the first dialogue
Putting connected pictures together was hard to understand but when we helped and explained how to play, it gave us unexpected triggers. The players told stories and made associations from their past, and when they understood the purpose of making up a story, they became committed. A NEW FORM, AND A NEW DIRECTION Back in class, we started to ask new questions about the game. Could we talk about pictures like a story? For our next visit, we attached the pictures in a personal little book with ones own stories, to keep. You give your partner a starting picture. Then he/her chooses pictures that could help to tell a story. You are allowed to take as many pictures as you want to help you in telling a story. It is of no significance if the story is real or not. Exploring the possibilities in using pictures.
At Aalhom Daycare we were playing it “two by two.” It resulted in a more natural and calm outcome. They got more focused and were
more present. We chose one starting picture for them and encouraged them to use others. We glued the pictures into their personal “story book.” We tried to write down what had been said, though it was sometimes hard to do. In some cases they were only able to describe what was in the pictures. Others told us about their childhood growing up on a farm. One person came up with what seemed to be fiction. After this visit, we wanted to do a “try out” one more time. Is the person who was talking about her childhood still doing so? Are we able to take part or see any changes? We went out again with the same pictures but they were bigger in size. Pictures with children, animals, and flowers were popular. The person, who talked about her childhood, still did so, even if there wasn’t that experience in the pictures. She wanted to tell us about it. That’s a thing she remembers and that’s meaningful and of interest to her. She made the pictures personal; we got an insight into her life and feelings. You also understood her time perspective when she is describing an old car as a new one. When we talked to her and said that’s a fine old car, she immediately corrected us on the fact that it is a new one. We found it hard to take notes about what they are saying, because when they started to talk, it was a rollercoaster of memories. They seemed to be very talkative and happy to show and tell us something. We were now, for the first time, discovering that they were really committed and motivated to play. For instance one said: “I’m going to choose a difficult picture for you - What a bull story!”
The new layout With a starting picture and two empty boxes, the beginning and end of the games were became more clear.
A CLEAR BEGINNING AND END We still had the problem that nothing was leading the game. There was not a clear starting and ending point. This makes the patients confused; there isn’t anything that triggers the patient to participate. The pictures chosen were a good selection, but some of the pictures needed to be replaced. The booklet made it too much of an effort to play, lead the conversation and write at the same time, and the booklet was not a part of the game. We thought about making it a board game with a sheet to fill in, a sheet with three drawn boxes to place your pictures in. We discussed this and our main argument was to make a clear starting point and ending point in the game, but on the other hand a few
of the ladies playing the game wanted to choose more than three pictures. How could that be combined? We realized it couldn’t and chose the sheet with three empty boxes. One of the problems with our edition of the game was picking the first picture. That was something the patients found hard to do; the other player had to help them to choose. We therefor decided to place a starting picture in the first box, to make the game easier to understand and to make the keeping of the story a part of the game. On the sheet, after the three boxes, a few lines were to be filled out with the story told. This could be done after completing the story and would integrate the keeping of the story with the game. We sent the new edition of the game to Aalholm Daycare with a “how to play” description to see if they could use the game without us participating. Final Presentation
When talking to Vibeke after Christmas she told us that they had been playing in larger groups and that didn’t work at all. The caretaker had to lead all the conversations. When playing in such a large group the best way was just using the pictures on the table, not completing the sheets and writing down the stories. A COMMUNICATION TOOL (AND A GAME) Our final product is a communication tool, based on pictures, in the format of a game. To start the game you pick a random picture and place it in the first drawn box on the sheet. After doing this, the game can start. The first player then completes the sheet with two more pictures, from the collection of approximately 15 pictures on the table. After completing the sheet, the player tells a story. The other player can then ask follow-up questions and continue the conversation. When finished with the first story, you take off the pictures from the sheet. The second player then completes the sheet again, with new pictures and tells a new story. The sheet with three boxes makes the game clear – you start in the first box and finish in the last − and three photos are enough for a person with Alzheimer’s to complete. To create a feeling of success you need to keep the game at a level not too overwhelming for the patient; three pictures is a good level.
Nathalie showing examples of the game at the presentation the 25th of January 2011.
The game strengthens the communication by giving the patient and the other person something to gather around and to share. What is important with this game is to create a good moment and enable players to share their stories. The game can be used in many different ways. Using the pictures they can associate and tell stories or ask the other person to select pictures she/he likes; one can see what story comes out from that. The pictures are not bound to the game but can be used as conversation starters in themselves. In our research process, we found that pictures worked very well as a visual tool in establishing a connection between two persons. The game provides many possibilities to keep a dialogue; you constantly can ask questions and nourish the dialogue. It could also be a way of understanding how the patient with Alzheimer’s felt and experienced things. For example, you can use the game as a way for the patient to show his or her feelings at the moment simply by asking present-oriented questions as, “What are you thinking about right now?” If we would proceed with the project, we could focus more on the images and how to create a feeling based on a picture. It would be interesting to experiment with the method of using images based on reminiscence, to compare if there is a noticeable difference in the reactions. The same thing can be done using private pictures from the player’s lives. Is this too painful or can it actually be a good way of recollecting memories? And, is it painful for the person with Alzheimer’s or more for the relatives who can’t stand to see the patient not remembering his or her life? We would also want people who have a near relationship with someone with Alzheimer’s to play and evaluate the game to determine if they find that it reaches its purpose. It is probably easier to lead questions if you know the person for a longer time. There is also a potential for using the game in other contexts, for example in a conversation between a patient and his/her doctor. To use pictures selected for that specific occasion, one can talk
about the situation about drugs or the nursing home. There could also be an idea to use the game to keep track of the symptoms of the disease, like discussed earlier in the text. If researched and tried out, we can see a lot of further developments for the game.
“Humour and irony is a way of surviving”
HAPPINESS AS MEDICINE
HAPPINESS AS MEDICINE We had to think out of the box in order to create one Rie Maktabi Grue & Suzy Attah Mikkelsen
INTRODUCTION We are going to do a design research project on how smiles and happiness can be present in the daily life of the Alzheimer’s patient, and what needs the people with Alzheimer’s have in order to keep their personality even when the disease of Alzheimer’s fights against it. Throughout the field visits, we observed a certain humoristic tone between the diseased person and the relatives, a tone that felt both esoteric and welcoming at the same time. It was interesting to see people with such a strong diagnosis who could laugh about themselves and each other without feeling harmed. Looking through the quotes and stories, we found out that most of them seemed to be associated with different objects. For instance, there was a story about a teddy bear, which they used at the daycare home “The Place”:
“At the daycare centre, “The Place” new visitors are given a teddy bear, to make them feel welcome and comfortable.” Another story was about a woman who won a chocolate bar at Bingo:
“A lady at the Aalholm Daycare forgot if she won anything at Bingo. When she checked her purse, she found a chocolate bar, which was the prize. Every time she found it, it made her happy.” The caregiver Bibi
Among the stories, there were also quotes that summed up our theme:
“Humour and irony is a way of surviving.” We got the idea of turning every quote into an object. To make the concept clear, we made a scheme with an illustration of each object and the quote underneath it.
The first Box of Happines
As the idea of the overall project was to make a design tool for Johnson & Johnson, we created a problem formulation that could lead us in the direction of a product in relation to our theme.
Containing different object, that we thought would evoke the feling of happiness. The objects in the box was inspired
How can we develop a tool that enlightens that the people with Alzheimer’s need humour and happiness in their everyday life?
form the first field visits e.g. a red nose, a poet book, a teddy bear, candy, a camera, knitting tools, a beautiful chrystal and
Later in the process, we changed this formulation to a more suitable one, because of a modification of our theme.
THE FIRST BOX OF HAPPINESS We wanted to make a design tool that could help to inspire other stakeholders but also to make a tool that could actually be used as an activity for having fun. We made a box of objects, each associated to one of the collected stories. The box should blow life into new stories, as the objects in other hands would form their own meaning and bring new stories into our research. Not all of the objects were mentioned directly in the quotes; in some of the objects the symbolic value was more dominant than in others. For instance, there was the following quote:
“Kurt jokes around with the visitors at the Odense daycentre. He comments when people forget things with a mild sense of humour. The visitors don’t get offended, but laugh along and refer to him as a teaser.” To underline the humour in this quote, we chose to use a red nose for the man named Kurt, which symbolized a clown. Still to keep the value of a symbol like this all the way though could be a problem. In the class, a story about a woman and a bucket came up.
When the bucket was standing, she could tell what it was and what she could use it for, but if the bucket fell down on its side, the symbol lost its meaning and she could no longer put the bucket in a useable context. As we assembled the different objects, we had the story of the woman and the bucket in mind. The symbols/objects had to be of a somehow usable content. If the meaning of the symbol got lost, the activity of using the object would still contribute to both the user’s experience and to our research. To support getting feedback on the box we made three additional materials. The first material was a little booklet. Inside was a set of questions such as: “What makes you laugh?” and tool related questions like “What things would you like to put in the box?” The second feedback material was a poster with a picture of each thing on a blank background. We also made a visual manual. The manual showed pictures of us using each thing.
First skype meeting with Johnson & Johnson The objects in our first prototype of a box of happines was presented via webcam to Tina.
The visitors seemed to like the box and they even tried on the red nose, which created some great laughs. Bibi, the head of the place, suggested playing cards. We each played with a visitor at our side, helping when they did not understand, but soon enough most of them could play by themselves. We were excited when they won. We asked what they thought about playing cards and wrote the answer down on the poster. Most of them were excited to have learned something new, or to have done something they hadn’t done in a long time. We wanted to illustrate the use of the box for them, by starting to write on the posters, and asking them some of the questions related to the box content. We stayed at The Place most of the day. Before leaving we made an appointment with Bibi to leave the box with them over the weekend.
At the “The Place” At the Daycare center “The Place” we tried to play cards.
“THE PLACE” We brought the Box of Happiness to “The Place,” a daycare centre open from late morning to eight o’clock in the evening. The Place is visited by younger diagnosed patients, and people in the early stages of Alzheimer’s. There are about 10-12 steady visitors, and four staff members, one full paid nurse and three volunteers. The Place is not a nursing home, but more a big living room where the visitors socialize in safe boundaries.
FEEDBACK After five days, we came back to pick up the box of happiness. The feedback was superficial and included impersonal comments mainly from the staff. They had comments on three out of the ten feedback posters we gave them and they hadn’t filled out anything in our feedback folder. They hadn’t been eating the candy or writing in the poetry book and the camera and the knitting tool were gone. After they handed us this very poor feedback, we felt that we had to have a discussion with the residents about the box, so we could have a better and more personal point of view about the box. Coffee table at “The Place” The content of the first Box of Happiness, spread out on the
We were welcomed with hugs and greetings. There were four visitors that day, who all joined and sat at the long coffee table. We took the objects out of the box explaining what they were for, what stories they inspired and why we wanted them to try them. We also introduced the feedback materials, reading all the questions in the, “Your opinion” book, going through each poster and flipping through the pages of the manual.
table, to invite the the users of “The Place” to interact with the different items.
We sat down around the coffee table, took all the objects in the box and spread them out on the table. We asked questions related to specific objects, but nobody wanted to respond to the questions; sometimes they even ignored our question. It felt like it was too embarrassing to answer. When we finally got an answer, it was impersonal and short. We wrote down all the valuable comments and observations on the feedback posters, as they relate to the objects from the box. WHAT DID WE LEARN? We learned that the objects that invite social interaction as, for example, the card play, functioned quite well, compared to the objects that didn’t have the social value.
activities, stories, experiences and objects that relate to a personal story. In the beginning, we called this box “A Personal Reminiscent box.” With the new concept we wanted to make a box that could help people with Alzheimer’s to keep their identity even when the Alzheimer’s disease progresses. Filling the box required that you are in an early stage, because you need to be reflective about your own life story and you have to be able to remember your values, favourite activities and nearest friends and family. Our guiding question now was: How can we make a tool that can help people with Alzheimer’s keep their personality and give the caregivers and relatives a tool to better communicate and understand?
When the residents had to share the box, nobody felt a personal relationship with the box and nobody really related to the objects with personal stories. To get the personal stories, we have to address the objects to one person and their personal story. We experienced that our presence was very important for the activity of the box and to catch the important observations and comments. Robert, a caretaker, gave us this feedback:
“The box best functioned when we took the initiative. I think you should present the concept in something else than a box; it does not invite you to look in it in the same way as, for example, a basket.” TURNING THE CONCEPT UPSIDE DOWN After this visit to The Place, we were quite frustrated. We were disappointed that we didn’t get any personal stories but only superficial comments. Then we asked ourselves: What is it that we want to know? Which answers do we need to search for? We found out that we wanted to know more about the person with Alzheimer’s needs for care and how they retain their identity. How could we get to the personal stories and design a tool that would help people in their everyday life. We agreed to turn the concept upside down, by making a box for each of the residents instead of one for all. The box should contain
We found support for the concept in Tom Kitwood’s book, “Dementia reconsidered - the person comes first.” According to Kitwood (1999), the needs of the demented person are to be comfortable, to be near other people and to feel safe and belong in a group. It is important for the demented person to be occupied with meaningful activities that relate to experiences from their past, to have an identity and to tell their own life story.
Dialogue exhibition At the dialogue exhibition we used the opportunity to discuss our new idea with the visitors.
We also got inspiration from a consultancy on dementia in Copenhagen Municipality, called: “Demens teamet.” They stress the importance of finding and keeping the life story of the person with Alzheimer’s:
“The goal is to get the staff to focus on the person behind the disease instead of the disease.” (www.demensteamet.dk) Creating a life story for the person with Alzheimer’s provides new means of communication between the resident and the caregiver. The life story makes it easier to start a conversation or do a meaningful activity. It can even welcome the resident’s initiatives and allows a great possibility to understand the resident’s intentions.
direct question, when it wouldn’t make sense to add a quote to it. For example:
“What does your family look like?” As a part of answering the questions, they should find objects or photos. If the object that relates to the stories is too big to fit in the box, photos of the objects could be put in the box instead. An instruction sheet for the box explains the concept of the box for our three target groups: the person with Alzheimer’s, the family and the caregiver.
A scenario could be: The daughter comes to visit her mother. The mother is now in the late stage of dementia. The daughter takes the trea-
“Demens teamet” had a template to a life story that could be filled out on a form on their homepage. It asks for a picture of the person with Alzheimer’s and different questions about their life story. After answering the questions, you print them out and give them to the caregiver. The template is very uninspiring; it has no graphics and the questions are very superficial. We wanted to make some more personal questions, by adding quotations from our fieldwork, in order not to let the affected feel alone with his/her situation.
“It is cosy to have a teddy bear here at ‘The Place’ when it is not possible to keep pets.” “It is nice to sit with it and you feel safe somehow. We use to give the teddy bear to new arrivals, because it can be a bit overwhelming to be here the first few days.”
sure box and finds pictures of their summer vacation in Texas. She might not remember that they were there or even recognise herself, but by looking at the pictures she can see
THE TREASURE BOX To give the concept a humorous approach we chose to have a theme. We considered a jewellery box, but we agreed that it was too feminine. Then we thought of a treasure hunt theme and agreed that both sexes can identify with that. Our idea was to use metaphors to underline the playful side of the concept. By using words like treasures, hunting, valuable etc. we underline how valuable this action is for the diseased person. The essence of using this theme is to encourage the person with Alzheimer’s and their family, friends and caregiver to go on a “treasure hunt” and “hunt” for all the personal treasures in their life story. Quote from the instruction:
“Do you have something that makes you feel safe?” In each envelope, there are three cards with questions. Two of the questions start with a quotation from our fieldwork. We also ask one
“This is a box that will help you to collect your most treasured memories and most beautiful characteristics, to help others in understanding your values and interests.”
that she was happy, and when her daughter tells the stories behind the pictures, she smiles.
Instructions for the new box “The Treasure Box” The envelopes are divided into themes like: Family, Social behavior and needs, Friends and other relations, Dementia in your daily life, Childhood, Activities and Biography.
Therefore, we call the box, “The Treasure Box.” The theme also gives us many possibilities to design an interesting visual identity.
The Treasure Box Calling the box a treasure
Calling the box a treasure box, calls for a treasure chest design. Therefore, we have chosen to make it look like a treasure chestmade out of wood with a padlock closure. We have designed the print for the box, printed it on paper and wrapped it around the box. We thought of printing photos of padlock closures and wood on paper, but decided not to make it something it isn’t; therefore we have designed graphic wood and a padlock closure, which gives it a cartoon look that matches the theme and the text in the box. The concept of the box is that it should be compact and inexpensive so it’s easy to send and receive. Therefore, the material is paper. We chose to make a box that has to be folded out to function as a box.
box, calls for a treasure chest design. Therefore, we have chosen to make it look like a treasure chest made out of wood with a padlock closure.
The envelope is a small treasure chest and the theme is written on a “gold plate.” When opening the envelope, three treasure maps come out. The question is on one side and the answer is on the other side.
We have designed the print for the box, printed it on paper and wrapped it around the box.
KARIN’S TREASURES To test our new concept, we wanted to introduce the treasure box to an early diagnosed Alzheimer’s patient, living/ or soon to be living in a day-care centre. Both of us thought about Karin from “The Place.” Since our first visit, we felt a special connection with her. She is very open and complaisant and every time we visited “Stedet” she was able to remember us. We contacted her through her caregiver Bibi. Bibi confirmed that Karin would like to participate and we arranged to visit her in her apartment.
She lives on the first floor in a 50 m2 apartment. Her children have furnished her new apartment with all her favourite furniture from her old apartment. We saw the living room, which was very beautiful and had almost royal furniture. We saw the kitchen where she opened all the cupboard doors and even her refrigerator. The bathroom also had a shower and she had decorated it with dried flowers. Her bedroom was the most personal room, with a lot of pictures on her desk and a painting of her mother beside her bed. She commented a lot about her things and furniture and we paid attention to everything because we knew that it could help us find objects that relate to the answers that she was supposed to give us afterwards. We sat down on her sofa and talked a little bit before we took the box and placed it on her coffee table. She smiled and said, “It’s beautiful, but what is it?” We told her about the concept of the treasure box and she seemed to like the idea. We asked her to take an envelope with one of the themes that she would like to start with. She chose the theme Family. The first question was:
“What does your family look like?” She stood up, went in her bedroom and came back with a big blue book. She explained that the book was a family book from 1550 – 1966. She had added her own children’s photos and information in the back of the book with her own handwriting. She told us stories about her family members and her relationships with them. This family book was a good starting point for a good and important conversation. Therefore, we decided to take a picture of the book and write on the backside of the picture: “This is my family from 1550 till today” and put it in the box. She also had pictures of her mother, father, sister, own children and grandchildren. We took a picture of each one of them and wrote their name and relationship to Karin on the back side and put it in the box. It took almost three hours to create the box and afterwards she said, “It was fun, but I’m tired now. I have to go out and smoke a cigarette.” In the end, we got three personal tangible objects and 20 pictures that relate to a question in the box. To fill the box turned out to be a very emotional journey that opened up a lot of important and very personal stories. Karin also told us about unhappy memories. Not all of it seemed necessary to be told or to be kept as a memory in the
box. The box should be like a house that provides introductions for opening different doors but it should be up to, in this case, Karin to choose to enter the room and tell about, for example, her unhappy memories. To make the treasure hunt comfortable for everybody, we recommend filling the box on a day when you can go back and forth with the questions or to take one envelope each time the family or friends come for a visit. We were very surprised at how much she opened up and we are grateful that we got the opportunity to walk into her life. But we also feel a big responsibility to use her personal stories in a respectful way. Her wish is that it should be used as a tool to help other persons with Alzheimer’s.
At Karins place Elaborating at the content of The Treasure Box.
The feedback that we received gave us a new perspective and new ideas to develop The Treasure Box concept even further. We think that developing the box during the disease has two sides. On one side, it’s a good way to let the box show their personality at the stage of Alzheimer’s they are in. And to go after new treasures could be an activity for the family, friends and caregiver when they come for a visit. On the other side, we find it important to keep the human being without the disease and remind them of their personal stories, experiences and relationships through a whole life story.
January the 25th
Now we stand with a design tool that is going to be handed over to Johnson & Johnson, that gives insight into the ethnographic design study of the needs of keeping a good mood and a safe everyday life at the daycare centre. We discovered the importance of keeping ones identity even when the disease of Alzheimer’s fights against it. We made a design solution, in the form of a treasure box in which the person with Alzheimer’s should go hunting for their personal treasures in their life story with their friends and family and turn all the personal treasures into tangible objects, pictures and written stories. We experienced that after gaining the trust of the people with Alzheimer’s, they opened up and wanted to help others to deal with the disease. The tools are made along the way and are redesigned several times in order to match the needs of the stakeholders and clients. Through the whole process, the people we were in contact with told us that they only had one wish for this project, and that was for us to spread the word of Alzheimer’s out in the world. In the end, what we learned was that we had to think out of the box, in order to create one.
Presentation of The Treasure Box.
“We are afraid of so many things. We don’t talk about death either ”
THE EARLIEST MOMENTS
THE EARLIEST MOMENTS There is a very delicate balance between being just old or absent-minded and being in the beginning of Alzheimer’s disease Monika Havnø
MOTIVATION Orla had been to a 50-year birthday celebration with a lot of people he knew, but most of the evening he just sat with his closest relative all alone, because people were afraid to address him. This made him frustrated and resentful. “Just because I have Alzheimer’s, I don’t bite people,” he said. When this taboo and understanding of the disease is prevalent among the general public, it is very understandable that people are reluctant to get diagnosed. I am investigating the very early stages and the time and issues around diagnosing Alzheimer’s disease, and how this affects both the Alzheimer’s patient, and the relatives: How do the early stages of Alzheimer’s appear to the patient, and why is it hard to discover and do anything about it? Why is it hard to go to the doctor, and how can these difficulties be visually explained? How are the early stages of Alzheimer’s communicated among elders - peer-to-peer - and within the family? Looking into the material used during the actual diagnose process, the first material you get from your doctor is a little folder called, “Know the 10 signs of Alzheimer’s dementia.” Each page in the book is divided into two columns, one saying: this is normal, and one saying this is not normal. Getting diagnosed at the doctor’s office, you get an 11-page questionnaire. I spoke to several people who told me that the first time they or their relative had the test, they did fine. The disease is manageable in the beginning, so they could get their act together at the doctor’s office. This made me think about these questions:
How does this meeting with the medical community feel from the inside, among those who have been through it, and what thoughts do outside persons have about ending up in this situation?
Do they know what to do and how do they feel about it?
Meeting the doctor The first material you get from your doctor is a little folder called, “Know the 10 signs of
IT IS NOT A CHECKLIST! To illustrate the diversity, the “book” about the behaviour of the patients was not made as a checklist, but more as a bunch of suggestions of what could be happening. Because the situations were not deadlocked in an inflexible position, there was an opportunity to discuss them.
From the field visits and the discussions in the class, I understood that Alzheimer’s is a very varied disease and it does not necessarily form a simple pattern. Alzheimer’s disease is exhibited differently from person to person depending on many things, for example, the temperament and personality of the person, and the physical way it develops in the brain.
I decided to try out my book as a dialogue tool, and went out to visit the nursing staff at “Pilehuset,” though it is a home for patients with very advanced Alzheimer’s. I got in contact with four staff members to whom I presented my project, with the agenda that I wanted to see their reactions to the book; I wanted to know if they could recognize the situations, and if the way of showing the diversity in the situations was understood.
Reading the informative material we got about Alzheimer’s, I did not think the diversity emerged very well. Therefore, I began thinking of a way to visually illustrate it. I collected small personal stories from all of the visits the class made, and extracted the main essence of each situation so it could be shown in one shot. I arranged the situations and directed a model into performing them, while I was photographing it. I collected the pictures together with quotations from the situations, and made them all into a foldout book. The book had the title, “Moments” in the middle, wherefrom the situations made ramifications in different directions.
I made five different foldout posters each belonging to one of the five branches pointing out from the middle of the book. On the front page of the poster, there were titles representing the situations on the branch. The titles were created to make the situations more general, so that people who did not know the concrete background could still relate to them. Inside the foldout posters there was, on the first page, space for writing a description of a similar situation, and on the second page, space for writing the professional response to this situation. The staff members quickly understood the structure of the book, and could easily discuss it on this basis. All four of them agreed that the book gave a good impression of the unpredictability of Alzheimer’s disease, and that they believed the less grave appearance made it easier to talk frankly about the subject.
However, using the foldout books to collect their responses did not work out as I wanted them to. There were too many things in play at the same time. The staff was annoyed that they had to write down everything, or repeat it so that I could write it down, and they could not locate where the posters belonged. But the most important feedback I got was that I should not try making connections among the different situations on the branches of the foldout book. On the contrary, the best thing about it was the illustration of the sporadic appearance of the different Alzheimer situations, without any clear connections.
After ascertaining that my feedback material did not work out as intended, I wanted to adjust it before the next visit. I made 30 small posters still folded as a book just without any questions; it was only a pink front page and two blank white pages inside. The idea was that while the individuals came with their feedback, I would write it down on the small posters and stick them somewhere in the “moment” book depending on which situation had led to the conversation. In this way, the interviewed people can easily follow the progression in the conversation as the book gets more and more filled with their own stories.
Dialogue exhibition Testing and trying out the foldout book at the dialogue
Instead of showing examples of the patient’s behaviour after getting diagnosed, I decided to remake my dialogue book so it shows the behaviour before. I had already bumped into many different stories about the earliest signs. As an example, Pedro (a patient who had received an early Alzheimer’s diagnosis), had told me how his first experience felt from inside: “Suddenly I got all confused. For ten minutes, I did not know where I was, or who my friends were. Then it all came back.” I contacted several family members who had all been relatives of different Alzheimer’s patients, and interviewed them about the first things that they had noticed. I experienced that the more outlying relatives actually were faster to see the signs, than the closest relatives, because the closest relatives saw them every day and did not notice the slow changes, plus the closest relatives had a harder time acknowledging it. I decided to keep the format of the first version of the dialogue book, because I felt it had the conversational effect that I wanted to acquire. I therefore took new pictures of all of the earliest situations that I had been told about during my research, and made a book similar to the first one. MEETING LIS AND BENTE I took the new version of the dialogue book to a centre for senior citizens. There I met Lis who had signed up to help me. Lis asked her friend Bente, if she wanted to join us. At first Bente said no because she did not want any more lectures about Alzheimer’s. But when I told her I just wanted to ask about her point of view, she agreed to come and sit with us.
exhibition. Examples of quotes from the book: “My sister had troubles getting things started and was less keen on going outside”, “My husband didn’t understand my wonderings towards his changings”.
I folded out my dialogue book, and we sat in between the branches with our respective coffee cups. It turned out that they have a common friend who is not diagnosed. Lis and Bente told me that the friend is behaving much like that which is shown in many of the pictures. I wrote down what they said, commented and asked some questions. When they said things were hard, I asked, “Why do you think that?” When they explained some of the difficulties, I asked, “What could you want as a help?” Lis and Bente reflected on their own stories:
“Of course we know the feeling of getting a little confused. That is alright to do without running to the doctor, when you have passed the retirement age.” I placed reflections like this in the middle, upon the “moments” subtitle. Coming home, I placed all the quotations next to each other. The quotations represented three different perspectives on the disease. The first group of quotations was looking back and describing concrete situations, arising directly from the situations in the foldout book. The second group of quotations was present reflections arising from the general difficulties in the concrete situations. The third group of quotations was the forward-looking possibilities arising as answers to the problems.
Meeting Lis and Bente At a centre for senior citizens in Valby.
I placed the three groups of quotations on three different wall sheets and gave each of them a subtitle using the most incisive comment in each group of quotes. TOWARD A FINISHED TOOL At the review of my work at Live Work in London, one of the reviewers said that he could recognize his mother in many of the situations, and also himself in some. This is the real difficulty in the earliest phase of Alzheimer: there is a very delicate balance between being just old or absent-minded, and being in the beginning of Alzheimer’s
THE FINAL DIALOGUE TOOL The products I have ended up with are a final version of the foldout dialogue book, and a catalogue explaining how to use it, including the results I got from using it. The dialogue tool has a double function; it has helped me collect considerations and reflections upon Alzheimer’s, which I have used for further analyzes, trying to understand and interpret my experiences. But it can also be used in the future as a dialogue tool to be used among elderly people, and people who are having a hard time talking about the fact that there might be something “wrong” with them or their relatives.
Feedback at Live Work At the review of my work at Live Work, one of the reviewers said that he could recognize his mother in many of the situations, and also himself in some.
disease. There is not a visible demarcation between the two, and that is the reason why it is so easy to explain it away. As a dialogue tool, “Moments” points out in many directions like branches on a tree. It brings open-ended suggestions to different situations, but the form indicates that they are only possibilities. The flexible branches give you the liberty of choice to close down the branches you can’t relate to. None of the persons I was showing the book to actually did that, but seeing me demonstrate it while explaining the book, made them aware of the fact that it was not carved in stone. I have looked into the pros and cons of organizing the branches of the tool into different categories. When interviewing Jutta about her husband’s first signs of Alzheimer’s, she told me that he was losing his appetite both at work and at home and it showed in the same way both places. Therefore, I figured that the division into different activities did not work. I found that a division into more personalityfocused areas was more suitable. The five categories are: 1. personality changes, 2. inside feelings, 3. changing states of mind, 4. corporeal changes and 5. reduced overview. Though I have made the categorization, I am not sure of its usefulness. It is important not to organize the thoughts of the users, because they might have a better and more nuanced perception and understanding than what we anticipate. Instead, it is important to stick to the ambiguity in the communication.
The book is meant to be used as a dialogue tool for a doctor, senior centre, home-care orderly, nurse or anyone who might be in contact with elderly people. It does not have to be targeted toward only potential patients. For people not (yet) affected, it can create an awareness before the problem occurs. Maybe the book can also be used as an introduction to the real diagnosis, to open up a conversation. The specific way the dialogue tool is shaped is not crucial to its message. It could have been designed as a turning wheel, with more branches, or in other ways in which the shape would signal that there is no connection among the situations. What is important is to signal to the user that it is not carved in stone. Using pink posters as a collector for the feedback material is also just a proposal. One could as well use other “marks” without writing anything on them, just to demonstrate a development in the conversation. Summing up, this project demonstrates that targeting, impatience, and prejudged results are not good sources for opening up to the human beings behind the disease. I think it is important to lay down the guns of expectations, solutions and achievement-oriented lines of procedures and instead open up and be more sensitive and careful.
“What good is it anyway, to go travelling, when my wife doesn’t remember it after two weeks?”
MEMORY AND TIME
MEMORY AND TIME Perhaps time is linear, but our memory is a power that can jump through time? Gudrun Risak Schou
BEING IN TIME A husband of a demented wife asked this question at an information meeting about Alzheimer’s:
“What good is it anyway, to go travelling, when my wife doesn’t remember it after two weeks?” This made me think of the concept of time and how we consider ourselves as individuals in time. Do we build up our identity through past experiences and memories? And does the way we imagine our future reflect our memories and past experiences? Those were some of the questions that first struck my mind. So what happens then, when suddenly you no longer remember people, things and situations from your past, like when you have Alzheimer’s? In what way will you then be able to create conceptions about your future, when your past becomes isolated “islands” of consciousness without a consecutive context?
Sketching time Presenting my first sketches of
My approach to this project will be to explore different time perceptions for people with dementia and their relatives: In which ways does the perception of being in time, change when one’s “timeline” becomes unclear or falls apart, and the understanding of concepts such as past, present and future change? What effect does it have to the relation between a person with Alzheimer’s and his or her relatives, when they are cut off from a shared past? Those are the main questions I want to explore, not directly in order to solve a specific practical problem, but to illustrate an issue that
my thoughts about time, being and memory in the class.
I think is important to be conscious about, in order to better understand how Alzheimer’s affects the lives of both the demented person and their relatives and the relations between them. THE WORKBOOK I got in touch with Kirsten at the information meeting organized by the Alzheimer Association. She was the one getting in contact with me, and I felt right away that she had something on her mind. I told her my reasons for being there and she began to talk to me about her life with a husband with Alzheimer’s disease. We agreed on meeting again and exchanged phone numbers.
Elaborating on the workbook Dialogue with Kirsten about time: past - present - future.
Before I met Kirsten again, I, in cooperation with my fellow student Mikkel, created a workbook. A workbook is a useful tool for framing, guiding and capturing dialogue, when working with people outside ones field of expertise. It can function as a medium to raise critical questions and as a format for the informant to answer sufficiently. The workbook we made, asked questions on how we are beings in time. It consisted of three themes, dealing with past, present and future:
We are sitting around the table in her and Hennings livingroom.
When you lose your memory... – How do you then remember? To live in the moment... – How do you do that? The future... – Worries? - Expectations? With each theme, a little plastic pocket with pictures followed. The pictures were there to nurse the dialogue, in terms of the fact that pictures are interpreted differently from person to person, and can be more ambiguous in their language. Dialogues about pictures can function as an effective tool for “anchoring” meaning, which can lead to new realisations and give the opportunity to process and develop, both individual and collective experiences in a more rich way, than if you only use words. Working with pictures can lead the dialogue through reflection, definition, association, discussion and negotiation, while using only words will create all the different and rich nuances in the head of each individual in the dialogue. Another thing, about using pictures, is that you have a unique opportunity to show yourself in the dialogue, by, for example choosing private pictures.
The workbook My fellow student Mikkel and I created a workbook. A workbook is a useful tool for framing, guiding and capturing dialogue, when working with people outside ones field of expertise. It can function as a medium to raise critical questions and as a format for the informant to answer sufficiently.
MEETING KIRSTEN & HENNING Mikkel and I met Kirsten again in the beginning of December. When she opened the door, she was alone and she gave us a warm welcome. She told us that Henning was at the train station to pick up the free newspaper. She made us some coffee. We sat down at the table and presented our workbook to her; then Henning came home.
Supporting the story For us, as strangers, it was difficult to understand what he was trying to say, but Kirsten waited for him to speak out. When she saw that we didn’t
Their apartment was almost covered up in Christmas decorations. She told me that she decorated the same way every year, but this year, she had rearranged it a little. She pointed at a wall with big decorations on it and said:
understand what he was saying, she took over in a very elegant way, like: “Yes...that is also what you say Henning, that...” and then she could explain to us, without
“Here used to be a mirror, but Henning thinks there are other men in the apartment when he passes it, so I took it down.”
overtaking his story, but rather supporting it.
It is difficult now to recall what I expected Henning’s condition to be like. I have never known anybody with Alzheimer’s before and I remember that I was a bit nervous: Would he be able to understand us? Should we speak in a certain way? But I could have saved all my worries, because when we were there in the situation, it felt rather natural, how to act. Henning wasn’t able to be actively participating, while elaborating on the workbook, as he had lost his ability to speak fluently some years ago, but Kirsten had a fine way of including him in the dialogue, by asking Henning questions like: “Do you remember that, Henning?” or “Don’t you think...Henning?” Sometimes he just smiled, but now and then he ventured into telling a story he suddenly remembered. For us, as strangers, it was difficult to understand what he was trying to say, but Kirsten waited for him to speak out. When she saw that we didn’t understand what he was saying, she took over in a very elegant way, like: “Yes...that is also what you say Henning, that...” and then she could explain to us, without overtaking his story, but rather supporting it.
Kirsten was eager to tell us about her and Henning’s “ways of doing things,” and seemed proud of her practical inventiveness. The next theme in the workbook: “To live in the moment...How do you do that?” gave rise to talk about the importance of living in the moment, the way Kirsten and Henning eat or go for walks and how they together still can enjoy being immersed in flowers or birds on their way. Kirsten thinks that people in general are too busy in their everyday lives:
The medicine tactic On top of his spectacle case, Kirsten has placed a patch (some of Hennings medicine
“There are many people who will never come to life, because they are too busy thinking of what they are going to do next.”
comes in patches), so that Henning remembers that there is medicine inside. He takes the medicine by himself. When Kirsten hears the sound of the spectacle case closing,
The last theme in the workbook: “The Future – Expectations –Worries” was difficult for Kirsten to talk about. She saw the theme and asked if we should eat lunch before we continued. I followed her into the kitchen, to help her with the lunch and when we were alone, she told me, that even though she and Henning are together everyday, she often feels lonely. While eating, we were talking about their daughters. Kirsten was asking about our lives. We both told her about our lives and I showed her pictures of my children. After eating, we put the workbook on the table again. The dialogue was not as lively as it had been while we were talking about the first themes. Kirsten was sad and said:
“This is difficult to talk about; I push it away from me.”
THE BOOK ON THE TABLE The first theme in the workbook: “When you lose your memory... How do you then remember?” started a dialogue about some of the everyday tactics Kirsten and Henning use to make their everyday life easier or to include Henning in the everyday activities, like taking medicine, finding the way home, dealing with money, shopping or simply remembering their past.
She later said, while Henning wasn’t there, that she had lots of worries and we could of cause talk about them, but not while Henning is sitting next to us. EXHIBITING THE FIRST ENCOUNTERS At the dialogue exhibition, I showed Kirsten and Henning’s system, to remember to take Henning’s medicine and the tactic for including Henning. I also showed mine and Mikkel’s first inquiring drawings of how we think we as individuals are beings in time.
she knows that he took his medicine. But she always asks him anyway. And he answers her: “You heard it.”
The participants came up with many different and exciting suggestions on how a “timeline” could look and how remembering can be exercised in many different ways: A woman talked about bodily memory and another woman talked about how she could remember many telephone numbers from the time before she got her cell phone, which now remembers the phone numbers for her.
A third woman couldn’t remember her pincode to her credit card as a number, but said: “It’s just in my fingers.” At the dialogue exhibition Discussing different perceptions of time and being in time and how memory is more than the quality of the brain tissue.
MEMORY AS AN ANTI-MUSEUM The philosopher, Michel de Certeau describes our memory as an anti-museum (Ceteau, 1984). He understands memory as a creative power, which can be expressed in time and space. Memories are, according to Creteau, not dependent on left material traces after what is remembered, but are strengthened by the lack of traces and of those ”voids,” that are left when things and persons are no longer there. He suggests that memory and its memories are not bound in objects, but is a creative power that renders possible an ongoing circulation of associations among objects, places and thoughts. I began to think of time and memory as non-linear. At Kirsten and Henning’s, it was clear that the past was drawn into the present in the form of stories, photos and in the way Kirsten decorates for Christmas the same way year after year. But the future, Kirsten didn’t like to talk about. Perhaps time is linear, but our memory is a power that can jump through time.
Perhaps we can even talk about memory when we imagine what the future is going to be like?
From my notebook Sketching memory as a nonlinear power that can jump through time.
CAPTURING EVERYDAYLIFE IN A PHOTOGRAPHY After the first visit, I asked Kirsten if I could use photography to make a book of their life together. She liked the idea but said she would have to ask Henning first.
THE BOOK While making the book, I decided to emphasise and show the fine and unique ways, by which Kirsten and Henning exercise their everyday life.
Henning was into the idea and we arranged a new visit in their home. I took my camera and followed Kirsten and Henning in their everyday activities.
The format of the book I have chosen to be themes of A6 spreads, which are rather small, but it invites me to only show fragments. In a metaphor, I would like to call it a window, because we can’t see everything.
One example of what she told us was the system she has made for Henning to take his medicine by himself: On top of his spectacle case, Kirsten has placed a patch, so that Henning remembers that there is medicine inside. He takes the medicine by himself. When Kirsten hears the sound of the spectacle case closing, she knows that he took his medicine. But she always asks him anyway. And he answers her: “You heard it.”
Photoshooting I followed Kirsten and Henning
She wanted me to pass on her creative way of dealing with the everyday challenges with medicine and including Henning, as good advice to others dealing with Alzheimer’s. But as I saw it, there was much more than good advice in the story.
in their everyday activities with my camera.
She performed the medicine situation like an act, so Henning and she become more equal, like letting him take his own medicine in the evening, but in fact, she nevertheless checks on him. And it is almost like a settlement or a negotiation between them, and Henning is in the game, by saying “You heard it.” This ambiguity shows again, when she tells us about Henning going to the basement to get some beer in a bucket.
“Sometimes when I think Henning has been in the basement a little longer than he used to take, I go down to check on him, but then I tell him that I’m looking for some beetroots or something.” Then she looks at Henning and says, “Isn’t that right dear?” Then he smiles at her, and it is clear that it is a game or a performance they both are enacting; it’s not only Kirsten acting to Henning.
By keeping the stories and anecdotes in the book, fragmented, it gains an open-endedness, which promotes discussion, thinking, and inspiration, but also underpins that this is not the whole story. These are only glimpses of a world, of which we are not a part.
A book is normally to be read from the beginning to the end, like life is to begin at the birth and end when we die. I’d like to see the book as a “timeline” and to see the contents as memory, with different objects, places and thoughts, between which our associations can circulate. You can read the book as you like, as each theme is a solitary story or anecdote. I see different opportunities in the use of the book. In my program, I wrote that I was aiming to create a material that speaks a “language” that can reach into both the very entity of dementia and also into the world of facts and natural science. The book is my proposal for a common language, which I am hopeful will show the world of natural science and facts a way to reach the world of everyday practices and experiences. But I also see that the book perhaps could function as an alternative to support groups for people with Alzheimer’s and for their relatives. I see the book as unique. This is the book of Kirsten and Henning and their practice of everyday life. Though, I could easily imagine a set of books, each with their unique story from other everyday lives. But the challenge would then be to avoid to blur out the fine web of details in the numerous books. Shakespeare put it like this:
“The devil is in the detail.”
The book as a timeline I’d like to see the book as a “timeline” and to see the contents as memory, with different objects, places and thoughts, between which our associations can circulate.
The Royal Danish Academy of Fine Arts - The School of Design presents new welfare designs where innovative research and design improve life...
Published on Sep 8, 2011
The Royal Danish Academy of Fine Arts - The School of Design presents new welfare designs where innovative research and design improve life...