Design Research: Co-Design "Alzheimers Disease"

Project Report

Design Research: Co-Design Alzheimer’s Disease

21/1-2011 Emmy Linde Furniture and Spatial Design 3. Semester Characters: 35 546

Index Introduction and purpose of the study Method

Co-design/Design research and applying probes Process

First interviews and dividing into groups

The changing of relationships and communication problems

due to Alzheimer’s disease

Researching at Aalholm Hjemmet

First visit- 1st of December

Second visit- 8th of December

Third visit- 13th of December

Workshops – 15th and 17th of December

Sending the new version to Aalholm Hjemmet

London presentation and last developing The importance of telling a story Creativity is needed in conversations with Alzheimer’s patients A picture is worth thousand words The product: a communication tool - a game Potential and further developing of the game Reflection on our process working with design research and patients with Alzheimer’s Literature

1

p. 2 p. 2 p. 2 p. 4 p. 4 p. 4 p. 5 p. 6 p. 7 p. 8 p. 8 p. 11 p. 11 p. 12 p. 13 p. 14 p. 15 p. 16 p. 17 p. 18

Introduction and purpose of the study Suddenly I’m the grown up. I’m the one that is in charge of my mother and no one is taking care of me.

When I’ve been on vacation all I want is to call my mother, but that’s useless because she’s not there. I miss my mom.

(Vibeke, whose mother has Alzheimer’s) There are over 30 million people in the world that currently have dementia, according to Alzheimer’s Disease International (ADI). 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 – you will have to discover the symptoms in an early stage of the disease.

After each year that passes, these people 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 and 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 and 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 of a high priority.

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?

Method Co-design/Designresearch and applying probes In a process of designing there are as many ways of approaching it as there are designers. At the design school we learn how to first research the subject matter, discuss possibilities, then design and redesign.

Usually from the first moment we know where we want to end up, if it is in a certain field of design or in a specific object. But what is common is that we all work with a goal in sight, it can change during the process but won’t change our direction much. In working with this project we were presented with a new design process, a process with much more research and communication with our users. Co-design and design research were the keywords for our course and have been our way of approaching this project.

When working with design it is always important to know your target group or your future users, but in this approach of research we went further into researching. We went out not knowing which questions to be asked or problems to solve, just trying to get to know the person in front of us. This is a part of what DAIM (Design Anthropological Innovation Model) talks about when approaching a project using design research.

Exploratory Inquiry is researching without a hypothesis and researching to get more insight in the group being designed for. (Halse et al., 2010: p 27) When researching without knowing what it will lead to means you need to be aware of whom you are researching for and why. This doesn’t mean you need to know what will be the outcome, just that you are aware of what sort of information will be meaningful for your client or for your further design work.

Design research is a method to get rich information from a specific group of people using design tools.

These tools are specially designed for the specific task given and for the information needed. (Halse et al., 2010: p 21)These tools are also called probes, described as “design-oriented user research toolkits that are based on self-documentation”, (Mattelmäki, Tuuli, 2005: p. 188) meaning a toolbox that will be sent out to a group on which you will do your research. This box can contain different objects like maps, a diary, cameras 2

and questions to be answered. These are supposed to be filled out and sent back to you as a designer. (Mattelmäki, Tuuli, 2005: p. 192)And depending on what sort of probe you send out, you will also get different material back. Probes are used for inspiration, for information, for participation and for dialogue. (Mattelmäki, Tuuli, 2005: p. 187) Their purpose is to inspire the designer in thinking in new, creative ways, for information about the future user and their lives, for getting the user to participate in the process, provoking them to make up their minds and discuss things in the process and also for creating a dialogue between the designer and the user. (Mattelmäki, Tuuli, 2005: p. 193-194) A probe is meant to be the starter of a dialogue and will need further interviews to really make sense for the researcher. (Mattelmäki, Tuuli, 2005: p. 208)It is important for the designer to come out and experience the field, not only to send probes or do research but to actually be a part of that person’s life. (Halse et al., 2010: p 15) (Mattelmäki, Tuuli, 2005: p 203) To get to know the person is crucial in a design process.

What is important is to maintain this dialogue during the whole process (Halse et al., 2010: p 27) and to keep the user feeling as 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) (Halse et al., 2010: p 16) (Mattelmäki, Tuuli, 2005: p. 189-190) you need to get the user to participate and be active through the whole process. (Halse et al., 2010: p 71) We found it to be easier than expected to get people to participate through the whole process.

And the reason for this is because 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.

By working in this close cooperation, both designer and user learn a lot. For a designer having the user through the whole project is quite a tough process. You need to design tools that can help the “non-designer” be a designer and you also need to explain and educate them about the systems and methods you’ve been using for ages. (Halse et al., 2010: p 120) When working with events and repeating meetings with your future user, you, already from the start, need to think about how to explain your thoughts, prototypes and ideas. That is something that otherwise will 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.

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 see what comes out from events, interviews and workshops, and then take it from there. “The approach is event-driven in the sense that the outcome of one event becomes the starting point for the preparation of the next event.” (Halse et al., 2010: p 71)To get the most out of a co-design event, these events need to be carefully planned and thought through. (Halse et al., 2010: p 72)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. It is also important to the participants that they feel secure and know what will happen. (Halse et al., 2010: p 75)This will help them to relax and begin to think in creative and new ways.

In a design research project your final product will often be a box, where all the material and thoughts from interviews and events end up. This box is meant to be a box to be open and seen through to start new conversations and dialogues about the subject researched. This box needs to be communicated in a way that is easy to understand and to interact with. (Halse et al., 2010: p 59)And it also needs to be designed to make a common language among all the participants in the discussion. (Jacobsen, 1997: p 12)This is often found to be a problem when big companies wants to redesign or rethink their structure, that people don’t speak the same language (language meaning the social context and culture). When at a meeting for people affected by Alzheimer’s in Copenhagen, we could easily see the communication gap between doctors and relatives. The doctor uses medical terms and the relatives describe exactly the same things through their eyes. This is especially a job for the designer, to design the communication in a way that is understandable for the target group.

Being a part of the whole process, researching and prototyping will make this job easier for the designer.

When being a part of it you can retell the stories with more authenticity.

3

Process First interviews and dividing into groups When first getting the subject during our first week we got divided into different groups to go out and meet the people affected by this disease. We visited nursing homes, husbands and wives, support groups but also the Danish Alzheimer’s Association. By using the design research attempt for researching we went out to find questions, not to find answers or to solve problems. And questions we found.

We shared our experiences with the class and could clearly see that our way of looking at the disease had changed. When first reading about Alzheimer’s and discussing it in the class, we had a quite serious approach to it, but after our interviews we saw it through the eyes of the people affected and noticed that there was a lot of humor and loads of love in the everyday struggles with the disease.

In the class we decided to categorize our thought and visits into themes, like “humor as a strategy”, “dilemmas” and “the changing of relationships.”

The changing of relationships and communication problems due to Alzheimer’s disease My group chose the subject of the changing of relationships for further research. We found it interesting to see how people affected by the disease distance themselves from activities and those close to them and wanted to find out why this is. When reading about it and studying the interviews we also saw how big a challenge the communication gets, something we discovered later on.

So our attempt was trying to make a bridge, in some sort of activity, using pictures, to help communication be easier for the relatives and the patient. After reading about how important it is to keep your brain active, we first thought of the game memory, both in an ironic way (when people with dementia’s biggest problems are remembering) but also in the way of mind games helping you keep your brain active.

We thought of making the game changeable, using pictures in different levels of difficulty. Using more difficult pictures at an early stage and in a later stage using easily read objects like a coffee cup for example. This was an idea created in the class, without any further research and when given the idea of a memory game a second thought, and by reading about activities for people with Alzheimers, we realized that it would be too difficult for them. What’s important for an activity for people with Alzheimer is to be easy and one that will make the patient feel successful. (Verity, 2005: p 53)A part of the reason for patients not participating could be based on the fear of failing (Solheim, 1996: p 228) and by developing a game so close to the game Memory will probably make the patient scared of even participating.

4

Researching at Aalholm Hjemmet During our first interviews, Johanna visited Aalholm Hjemmet, a nursing home for people with Alzheimer’s.

We thought that would be a great place to start our research and exploration on how pictures can be used. A meeting was arranged and we needed to develop an idea to bring and get tried out. We made a selection of pictures, both abstract and more easily read pictures like a house. And to make it easier to start conversations about the pictures a few headlines were written down to place on the table. Headlines like “animals,” “flowers,” “family” etc. were placed on the table to collect the pictures under.

At Aalholm Hjemmet we visited their daycare department. This is a place for people not as far into the disease that they need a place in a nursing home. They still live at home, but visit Aalholm Hjemmet 1-5 days a week from 10 am-2 pm. The room is decorated to look like a home, with couches, TV and a dining table.

There is a large cage with birds and a rabbit for the patients to interact with. These animals were conversation starters every time we visited. “Oh, can you hear the birds? They are so noisy!!” or “I once worked with rabbits.” These were conversations heard at the dining table. Every day starts with morning tea. During this time, Vibeke, or one of the other caretakers would lead the conversation, talking about the events of the day, the lovely cups in front of them or the visitors from the Danish Design School.

5

First visit- 1st of December After having morning tea the daily activities start. The activities depend on who’s there and what their interests are or, in our case, if there are any visitors. We asked a few of the ladies to join us in playing a game.

We explained how to play, asked them to pair pictures and to place them under the headline they thought was suitable. We hadn’t thought it all through and it wasn’t easy to explain how to “play.” That made it hard for these ladies to participate. During a disease like Alzheimer’s directions need to be clear and the activities need to make sense for the person participating.

But they did participate. One of the ladies tried to pair the pictures (two bikes, two flowers etc.) and another lady started to tell whole stories about her family and their farm. Her stories opened our eyes to the fact that we could use the game to coax the patients into telling stories from their lives. What didn’t work was placing the pictures under a headline. This we had to help and guide them through. Photos mostly used were the ones with flowers, children and animals. But what was frustrating for them was not knowing why they played. The game gave them no starting point or end.

So after this first visit at Aalholm Hjemmet, we started to develop a new idea to try at our next visit. How could the game make more sense for the ones participating? And how could we use pictures in a game to start conversations and get histories from the patient?

We developed the game into a dialogue, letting both players play and take part in the game. You start by placing pictures on the table and then one of the players chooses a picture as a starter for the other. After given the first picture the other player completes the game with two new pictures chosen from the table.

After completing the set of three pictures, the player tells a story, made up or personally associated with the pictures chosen. To save the stories and to help the players to see the outcome of the game, stories are saved and glued into a booklet. For this visit we took a closer look at our chosen pictures and divided them into three groups: abstract, symbolic and personal pictures. The personal pictures were pictures taken from our own photo album to see how it would be to play with our own pictures. As much as experimenting with how the patients would react on more “normal” pictures, this was also to see how it would be to play with your own pictures, if we later on wanted to use patients’ personal pictures, to create more opportunities with that person’s situation.

6

Second visit- 8th of December For our second visit at Aalholm Hjemmet, we prepared for playing with all of the patients to see how different stories might come out. But when arriving at Aalholm that day, we found only three patients there at the time, one of them neglecting to participate. Tine, one of the ladies who also participated last time, wanted to play and so we sat down with her.

This time explaining the idea of the game and how to play was important, but we still found it hard to explain it so it made sense to Tine. She could clearly see that she was to choose two pictures after I gave her the starting pictures, but when to end the “game” was her question. Was it finished with three pictures and a told story or could she continue with her story, adding more and more pictures, or was that “wrong”? All we wanted was a conversation to start and a story to be told, so we didn’t want to stop her. This was frustrating for Tine, who couldn’t see the end of the game. The stories told by Tine were all personal and revolved around her father and growing up on a farm, close to the sea. From all the pictures taken, she could tell a story about that.

After playing with Tine, we wanted to try it with one of the other ladies at the daycare. Margot was sitting on the couch and we asked her if she wanted to play a game with us. At first she didn’t but after placing the pictures in front of her, she got curious and started to “play” not knowing she was playing. Margot wasn’t as good at telling stories as Tine and instead over and over again tried to find a pair in the game. In this edition of the game, there were no pairs, but she found odd pairs to match. No stories were told, she just explained what she saw. But when choosing a picture from the stack of personal photos, Margot got interested: Is that your daughter? Yes, Johanna said. And that triggered Margot to tell the whole story about her own family of six siblings.

Margot didn’t play the game as it was meant to be played, but a story came out. She told us about her life and that in itself is the goal. It doesn’t matter if the game gets played by the rules, or if you choose five pictures instead of three. What is important is that you get activated and talk. A conversation starter is what it’s meant to be, and that’s how it worked during this visit.

What didn’t work were the abstract pictures. Before visiting Aalholm Hjemmet, Johanna and I played the game to see how it worked. You need to be good at reading signs and symbols and have a massive imagination to be able to tell a personal, or made up story, from an abstract picture, something known to be hard for patients with Alzheimer’s. Pictures that did work well were the same as during our last visit: animals, children, flowers and nature.

When playing the game during the second visit we realized it was too hard to both play and lead the game and also keep taking notes on the story and save the pictures. For the patient, this doesn’t make sense and they kept asking: Why do we do that? What’s now? So for further developing we needed to think over how we could keep the stories and make that a part of the game.

7

Third visit- 13th of December For our third visit, we selected new pictures and decided to keep a limit of 15 pictures on the table for a game, and 40 in a stack. At the last visit we saw how confusing it was for both Tine and Margot to see the massive stack of pictures. You could almost hear their thoughts: this game will never end! The booklet form for keeping stories were kept, but enlarged after discovering at the last visit that the pictures were too small.

A week after our second visit, we were back at Aalholm Hjemmet to try our game with new pictures. This time, we got to play with two ladies, Elly and Lis. This time we made sure that we only had 15 pictures on the table and that we were clear on how to play and what to do next. I, as the second player, had to take the initiative and to lead the game, but both Elly and Lis were engaged in participating and loved to play cunningly by choosing difficult pictures for me to complete and tell a story from. Both Lis and Elly made up stories, instead of, like Tine did at our last visit, telling stories from their own life. When Lis told me about a wedding, I asked her questions about weddings, trying to get her personal stories about the same subject.

This worked, but requires that the one playing has the energy to ask questions like this.

As also seen during are previous visits, there is nothing leading the game and that’s a problem. There’s not a clear starting and ending point, which makes the patients confused and there isn’t something that triggers the patient to participate. The pictures chosen were a good selection, but some of the pictures needed to be replaced. One of them was a photo of cows standing in their stalls and Lis read this as “a group of people cheering when we came out of the church.” Close up pictures were too difficult to read for them and so we replaced them.

We still had problems with the booklet; it was still too big a project to play, lead the conversation and write at the same time and there was still a problem with getting the booklet into a part of the game.

Workshops – 15th and 17th of December Our game needed developing before our first workshop a few days later. 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 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 and the other player had to help them to choose. That’s why we 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 interact the keeping of the story with the game.

8

We presented this idea at the workshop in school on the 15th of December. The people taking part in the event were people participating in our first interviews and also people working with or affected by Alzheimer’s. I both played with patients, caretakers, family and designers that afternoon and got information about their lives, their choices and thoughts. Most of the feedback was personal and needed to be seen as subjective feedback.

They were all positive to the idea of using pictures for conversations, which some of them told us was already done at their home, using photo albums to keep remembering their life together. They were all interested in our research with abstract and personal pictures. They had all their own reflections on if it was useful to use the patient’s own photos in the game. Some said it would be a great idea; mostly these people were not affected by or knew anyone with Alzheimer’s. The people affected by the disease said it would be too hard and emotional to use personal photos. It would be too hard on both the relative and the patient if the patient couldn’t remember their children or their honeymoon in Spain. One lady told us an idea could be to select the pictures in a more personal way, not choosing pictures from their photo album but selecting them based on that person’s life. Like choosing a campervan instead of a boat, knowing that the patient had been on a camping trip every year, but never on a boat. This was a good point that we wanted to keep in mind for further developing. The idea with a sheet with an already chosen starting picture met with great success at the workshop. Some caretakers said it was difficult for a person with Alzheimer’s to keep a long story in their mind and that the sheet being so clear about what to do and when to end was good.

9

We did the same workshop on the 17th of December and got mostly the same feedback as at our last workshop. The feedback considering personal pictures and the form of the game were the same and we decided to keep the format of the game after our workshops.

10

Sending the new version to Aalholm Hjemmet This edition of the game we sent to Aalholm Hjemmet with a “how to play” description to see if they could use the game without us participating.

When talking to Vibeke after Christmas she told us about their experiences with the game. They had been playing in larger groups and that didn’t work at all. The caretaker had to lead all conversations and had to start the game. 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. Vibeke wanted us to select more pictures with occupations to start conversations about the patients’ lives.

London presentation and last developing After this feedback we went straight to London to present our idea at Live/Work. The feedback was positive, they liked the simplicity in the game and the clear start and ending, but was it necessary to keep the stories or did it make more sense to make the game reusable? They also wanted us to think of using the game as a tool to diagnose the stadia of the disease. If possible to take notes and use the same story again for keeping track of the process could be a possibility.

What we always wanted to do was to create a bridge over the communication gap between the person with Alzheimers and his/her relatives and therefore we chose to keep the game at a conversation-starter-level and didn’t develop it further to an diagnosing tool. What we do wanted to go further into was developing the reusable game-idea. After getting the feedback from Aalholm we realized they never used the lines to write down and keep the stories. The important part of the game was just playing and sharing and that could easily be done without the stories being kept.

11

The importance of telling a story For all of us, having a person who takes time to listen to you is important. We usually don’t take time to listen to each other or to learn from older generations; we just turn on the TV. This is one of the fears for getting Alzheimer’s disease, the fear of no one knowing your life story. (Wadstein, 2009: p 109) We are the only ones who know ourselves and our history and what will happen to us, when we can’t tell it To have people knowing you is crucial for us human beings−people around us, knowing us. When being placed in an institution like a nursing home, things around you change, your home, your lifestyle and your relationships.

The only thing you have left is yourself, but for how long? This is why the storytelling is so important for a person with Alzheimer’s, not only as an activity, but also as a reminder of who you are, that you have important things to teach others, and that you are valuable.

What started as a conversation starter with pictures, turned out to be a game to trigger the memories of people’s lives and showed us how important telling a story is.

Looking at Tine and the stories she told us, the urgency in telling them made her repeat them over and over again. And in a normal conversation these repeated stories might have been annoying, but in playing the game, the game made it OK for her to tell. This is what makes the game successful as I see it; you can make confusing and repeated conversations meaningful. And by asking and having interest in the stories you can strengthen the self-confidence of the patient.

It’s not only true and personal stories that come out from playing the game. Mostly made up stories are told but that is also a success, a success in the way that the patient is a part of an activity and talking and sharing.

It’s not only the true stories that are important for us to tell; the made up stories make us feel important when someone listens and takes an interest in listening.

What’s good about the game is that it can be used in so many different ways. Pictures will lead the way through made up stories, personal stories, fears and life-changing moments and you will take that journey with another person, getting to know each other.

I believe the greatest gift I can conceive of having from anyone is to be seen, heard, understood and touched by them. The greatest gift I can give is to see, hear, understand and touch another person. When this is done, I feel contact has been made. --Virginia Satir Especially for Alzheimer’s patients, I found it to be true, when seen, heard and understood, a connection is made and that will strengthen relationships.

12

Creativity is needed in conversations with Alzheimers patients A conversation need at least two parts: sharing and taking; but what happens when getting Alzheimer’s is that you lose the capability to take the initiative in a conversation and you might lose the words or the sentence you were about to say. To make conversations with a person with Alzheimer’s easier, you need to take time and have interest in that specific person and think in a new and creative way.

When researching and visiting Aalholm Hjemmet, we had many conversations about problems with communication and we also experienced it ourselves. Short-term memory loss is a big aspect in a lot of the complications and problems in conversations with Alzheimer’s patients. When getting asked the same question over and over again at a point you can’t take it and you might stop trying.

I had a few conversations with Elly, who seemed perfectly normal to me, until she kept repeating the same question over and over again. “Where are you from?” “Oh, from Sweden, I couldn’t get your accent, it could also have been Norway.” And then five minutes later: “Where are you from?” For awhile I kept answering that question with a long answer but after a while I stopped trying. She wouldn’t remember it anyway, so what was the point?

Caretakers at a place like Aalholm Hjemmet are used to these situations and know how to handle them, but relatives often feel stupid not knowing what to say to their own mother/sister/husband (Solheim, 1996: p 283) That changes their relationship and creates an even bigger gap between the patient and their relatives.

What we’ve noticed in developing this game is how important it is to have clear and easy instructions on how to play the game and what to do next. The Alzheimer’s patients need to know why they are participating and what is to be expected from them. If not getting the right information, some of them might choose not to participate because of the fear of failing.

When playing a game to get a person to tell stories from their life, you need to be aware of the importance of listening and understanding. When a person with Alzheimer’s is talking about the “new car” her dad bought, pointing at an old Volvo, you need to see that in her world. That is a new car her dad just bought and even though we know that’s not the real world, we keep acting like it is. What point is there in telling her something that will make her upset and scared? We need to focus on that moment, on that one good moment together. (Westius, Petersen, 2006: p 136) And if you want to ask the Alzheimer’s patient questions you need to think your wording through, to be sure you don’t ask in a way that is too hard to understand for the patient. A question like: “Can you remember the name of your dog?” can be answered by a quick “I can’t remember” instead of saying “You had a dog!” and the name might come to you without asking. (Aremyr, 1999: p 63) This is because of the extreme fear of failing or showing how bad the memory got because of the disease. So instead of answering, you just defend yourself by answering that you don’t know. This is something we found to be tricky in trying to get the patients to play our game. But by simply just starting the game, placing the cards in front of that person, they got curious and wanted to participate. And also putting yourself out there, starting the game and maybe failing, to show them that there is no need to be afraid, you can’t lose at this game.

13

“A picture is worth thousand words” After researching and working with pictures and their ways of starting conversations for almost 10 weeks, I found that to be true. A picture is definitely worth a thousand words. And in this context, talking about Alzheimer’s patients, we know it to be of great value to use pictures as a way of remembering.

Pictures, in the same way as taste and the use of other senses, help us to remember things from the past (Buss, 2010: p 133) When walking past a newly-mown field you recall summers from your childhood, spent with your grandparents on their farm. Senses do help us to remember. Senses are often used in rehabilitation for Alzheimer’s patients. When talking about pictures, reminiscence is a common term used in this field.

Reminiscence is the use of familiar objects, usually from older days, to help elders to remember and to feel safe and at home. In some nursing homes whole rooms are decorated using old furniture chosen from a specific period of time. For the patients, this will help them to recall things from their childhood and will help them feel safe. When using reminiscence in activities, you then choose familiar objects, for example and old teapot or a typewriter, and place them in front of the patient to touch and remember.

For a person with Alzheimer’s, remembering is something you lose, but remembering things from your early childhood will be the last memories to leave you. That’s why talking about your childhood will always open up new conversations and memories.

Pictures take initiative. It’s like they live their own lives, starting our conversations. At least that’s what I found them to be during our visits. When playing the game, the pictures chosen helped the patients to associate. The same picture could start different stories when used in new situations. The picture of a dog could in one story be her own dog and in the other be the dog of the little boy in the other picture.

What I also found to be interesting was problems with reading signs and symbols for the patient. (Aremyr, 1999: p 94)During an interview with Vibeke Sode she told me about her mother not being able to clean the house. The reason for that was once the bucket fell over; she couldn’t recognize it as being a bucket any longer. The symbol for a bucket for her was only the bucket filled with water and not the one on the floor, with water all around it. How could that be? When sharing the story with the class, Monika, one of the students, told me about her grandmother trying to put her laundry in the toilet, when not having a laundry bag to put them in. For her grandmother, the first thought was to put the laundry in something with a lid, and when there was no such thing as a laundry bag, her grandmother simply read the signs she knew to be a laundry bag – something with a lid. Alzheimer’s disease affects the ability to read parts into a whole picture.

That is something we also discovered when choosing pictures for the game. We thought a close up of an old couple hugging would be a great picture to tell a story from, but it wasn’t. The reason was that the patients couldn’t see it. They could not see what it was and asked me if it was someone looking in a mirror? The same thing happened with the photo of the cows, for Elly, it wasn’t cows; it was a crowd of people waiting for her on her wedding day. We chose not to use that picture the next time, but was that the right decision?

The photo helped Elly to tell a story about her wedding day. Does it really matter that what I saw in the photo wasn’t the same for her?

There are many things to be said about pictures and how we found them to work very well as conversation starters, but what is important to remember is that pictures are just the starter. We need to be present during conversations like these. Pictures can’t lead the conversation from start to finish. We need to participate.

That is what communication is all about, giving and taking.

14

The product: a communication tool – 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.

After trying different prototypes we found the sheet with three boxes the best; it 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, and three pictures is a good level.

The pictures are selected resulting from our researches and contain photos of animals, people, relationships, activities, homes, children, flowers and professionals. These pictures are pictures we have seen work as a conversation starter and help the patients to associate and tell different stories. The pictures are easily read and there are no close ups or abstract pictures. The pictures are of modern situations and objects; this is because we wanted it to be on open game, a game to play for everyone. During our tests we found these pictures to work well, also for telling stories about the past.

The game is meant to strengthen the relationship and communication for the person with Alzheimer’s; if that is with a relative or with his/her caretaker, it doesn’t matter. What is important with this game, is to create a good moment. What is also important is to share your stories. As said before, sharing our life story is important for all of us human beings; Alzheimer’s patients are no exceptions.

How can the game strengthen the communication? I think that by giving the patient and the other person something to gather around and to share, something common, will help them to start a conversation and to keep it going for a while. When pictures start the conversation, the relatives or caretakers don’t have to come up with subjects to talk about. This will be a relief for some, who find it hard to be creative and come up with new things to say every time they visit. The pictures in themselves can’t lead the whole conversation but can be a help in keeping it interesting and fun.

By being such an open game, the game can be used in many different ways. Using the pictures they can associate and tell stories or by asking 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 and can be separated and used as conversation starters in themselves. That is what happened at Aalholm Hjemmet when playing with a group of seven patients. They used the pictures, but not the sheet to complete the stories.

15

Potential and further developing of the game If I had the time, I would have liked to try the game with different pictures, only using old pictures or personal pictures from their photo albums and so on. It would be interesting to see what would come out of something like that. What I found interesting with the pictures we chose is that they can be associated with an early childhood but also be used as describing a situation today. A picture of a child can always be associated with your own childhood or with your children.

If developing the game further I would have liked to see the game in a more sustainable form, in even thicker paper or in wood, for example. That would give the game a more finished look.

I think there is potential in 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 of drugs or the nursing home. There could also be an idea to use the game to keep track on the symptoms of the disease, like discussed earlier in the text. If researched and tried out, I can see a lot of further development for the game.

16

Reflection on our process working with design research and patients with Alzheimer’s During this project we learned how important it is to be seen, heard and understood, how important it is to have someone listening to your story and taking the time to ask you questions about it. I think that it is important to keep that in mind, that if you want to know, there are millions of stories to listen to. The patients I’ve been talking to have all been willing to talk to me and share their stories or lives. What I needed to do, was just to take the time and interest in them. This knowledge is important in future research projects but also in all relationships we have and will have during our lives.

Another thing learned is also the importance of an initiative taker, in this case, often caretakers and relatives.

How important is it to have a person who would walk that distance to create new ways to communicate and to lead you through a conversation? For a person with Alzheimer’s these persons are invaluable and need lots of credit! By creating something to ease this burden of always taking the initiative would be a great thanks to all important initiative takers, and will also ease the burden for the patient, knowing they are unable to take the initiative they want to take.

That pictures can start conversations, I have already written, but it’s crucial in this project and needs repeating. As said before, pictures help us associate and help us remember. If wanting to know stories from people with Alzheimer’s, the use of pictures is a great way to this knowledge.

I, as a design student, and in this case a design researcher, have learned a lot during this 10-week course. I’ve learned, the hard way, the importance of being well prepared for a meeting and also the importance of being active and fully there in a conversation, listening and caring, to see the person in front of you.

Working with design research and co-design has been quite frustrating for me, who likes to be organizing and making to-do-lists in a project. In a co-design project working close to your stakeholders, developing your product from one event till the next makes this planning hard to do. Also, working under such time pressure has been difficult for me, but helped me to work even faster than I thought possible. And, you can actually see how far we’ve come in such a short time.

It has been great working with a sponsor and a client like J&J, learning heaps about working with a client in mind and with a deadline. To be thrown out into presenting your project in English, for people you just met, has also been a challenge. There hasn’t been time to think over and reflect on these things, not enough time to get nervous, just enough time to prepare the next step before taking it.

From reading about and meeting people affected by Alzheimer’s, I have also learned a lot about the disease and might have a slight tendency to see myself as a hobby anthropologist. It will be hard to let go of the patients at Aalholm Hjemmet after spending so much time with them, but at the same time I feel like I have the best approach to enter this subject again, in another project, and would love to work with elder people or Alzheimer’s patients again.

In future projects I will definitely use the research method learned in this project. The way of working close to your target group and to get out in the field, instead of developing ideas in your own design world, without testing and talking to the real people affected by your design is a positive approach.

During this course I’ve been struggling to understand what design research and co-design really is. I have been trying to tell friends and family what I am up to at the Danish Design School, but never really had the right words for explaining it. After finishing this report and project I realize design research and co-design is what I’ve been doing the last 10 weeks and is now, in a way, a part of how I design and that’s why it’s hard to explain. It comes naturally now. And I hope that way of researching and working can be a part of my future design process.

17

Literature Aremyr Gun, Aktivering af mennesker med demens – idéer og erfaringer, Munksgaard Danmark (1999) editor Buss Dorthe V, Håndbog om demems – til pleje og omsorgspersonale på ældreområdet, undervisere og frivillige,Servicestyrelsen Halse, Clark, Brandt, Binder. Rehearsing the future, The Danish Design School Press (2010) Jacobsen, Jan Krag, 25 spørgsmål - en moderne retorik til planlægning af kommunikation, Roskilde universitetsforlag (1997) Mattelmäki, Tuuli (2005) Applying probes : from inspirational notes to collaborative insights. In CoDesign : International journal of CoCreation in Design and the Arts, Vol. 1 No. 2. Taylor and Francis, London, 83–102.

Solheim Kirsti, Demensguide, holdninger og handlinger i demensomsorgen, Tano/Aschehoug (1996) Verity Jane, Genantænd livsgnisten hos mennesker med demens, Munksgaard Danmark (2005) Wadstein, Cecilia, Själavård helt enkelt, Verbum (2009) Westius, Anders & Petersen, Ulla, I berättelsen finns jag - Livsberättelse och livsåskådning vid demens, Verbum (2006)

18