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Dit ben ik DPM82 18/06/2013 A New Light On Dementia

Coach: Wina Smeenk

Student: s104815 Tom van ‘t Westeinde


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PREFACE This report describes the design process that aimed at helping people that suffer from dementia to extent the time for being able to stay at home. Through designing and exploring in an empathic context it is possible to come up with solutions for the challenges faced when dealing with growing societal problems like dementia. This has led to a final design that provides a possible solution; “Dit ben ik”. This service contains a toolbox that stimulates physical and mental activity in a social context to visualize the past in order to communicate in the future.

The report communicates the gained insights and design decisions that are made during the process. It shows how a designer can combine social and empathic design by making connections and seeing possibilities while connecting with society. Then, through creativity, something new with value can be brought into existence.

varying from formal caregivers to an ergotherapist and actual patients were needed to get the right point of view on this difficult user group.

During this project the GGzE provided necessary feedback and resources in order to keep the focus on what is essential when designing for people with dementia. Furthermore a wide range of experts

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“Taking care of a person with dementia is like wearing a scarf that turns into a heavy coat.”

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TABLE OF CONTENT PROCESS OVERVIEW 6 INTRODUCTION

7

Dementia 7 Project 8 Challenges 8 Stakeholders 9

RESEARCH Pressure Cooker Client feedbach Benchmarking Field Research I Field Research II

10 12 13 14 15

Project Focus 16 Dementia Workshop 17 Midterm 18 Theme day 19

Expert meeting Co-creation I Co-creation II Co-creation III Open Design Space

20 20 22 22 23

CONCEPT DEVELOPMENT 24 10

IDEATING

EXPLORING IN CONTEXT 20

16

Concretization 24 Creative element 27 Final Design 28

RECOMMENDATIONS

30

ACKNOWLEDGEMENTS

31

REFLECTION

32

REFERENCE APPENDIX

34 36

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PROCESS OVERVIEW dementia CONCEPT DEVELOPMENT RESEARCHING

field research benchmarking concretization expert meeting client meeting theme-day Open Design Space pressure cooker mid-term co-creations reminiscence workshop requirements project focus

IDEATING

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EXPLORING IN CONTEXT

TIME


INTRODUCTION D EM EN T IA Dementia is a severe brain disorder that causes serious loss of global cognitive abilities. It is not a single disease, but a non-specific syndrome that affects areas like memory, attention, language and problem solving. Especially in later stages of the condition, patients may be disoriented in time, place and in person which results in complete dependence on the care of others [1]. The common short term memory loss can be seen as a bookshelf with all the gathered memories where the last written book falls off first. This causes the people with dementia to live in the past and remember less about the present. During the progression of dementia the communication in the brain worsens progressively trough several causes including Alzheimer’s disease (most common), vascular dementia or dementia with Lewy bodies [2].

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PROJECT

CHALLENGES

Theoretically 1 out of 5 people will get dementia when growing older. This means that currently about 35,6 million people worldwide suffer from dementia. Since the word population is aging this number will be doubled by 2030 and more than tripled by 2050 [3]. In this project the task for designers is to come up with an intervention that can contribute to people suffering from dementia in order to be able to stay in their home environment for a longer period of time. Furthermore dementia is not only overwhelming for the people who have it, but also for their caregivers and families. By improving the mutual bounds through communications the lack of awareness, understanding and physical and psychological impact can be decreased for all people involved.

When taking a closer look at the problems faces when designing products/systems for people with dementia there are 3 main challenges which have to be overcome.

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1. It is hard to get a grasp on the way of thinking of people with dementia. When designing for this user group empathy is essential to understand how they perceive daily situations. Therefore it is important to gain as much experience from different kind of perspectives. 2. The disease progresses in a very personal way. Based on lifestyle habits the mental and physical condition of a person are very influential how the person evolves during the process. This means that it is hard to generalize the assumptions that are made. 3. People with dementia get easily confused when new and especially unknown artifacts are brought into their daily life. When designing assistive means it is important to pay attention to the high value dementia patients have for the familiarity of their own environment.


STAKEHOLDERS Within this project three main stakeholders were closely involved with the development of the projects. The mental health care instance of Eindhoven (GGzE) was involved as the subclient of this project. Through close contact via the PhD student Rens Brankaert and the GGzE the international umbrella organization ‘Innovate Dementia’ could be informed about the process. Furthermore there were several different delegates from the GGzE, municipality and TU/e present during presentations. These multidisciplinary experts were needed to provide stimulating feedback. The stakeholders were also necessary to facilitate involving experts during the design process and offer user testing possibilities.

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RESEARCH PRESSURE COOKER As an essential part of introductory research a pressure cooker was used to get into the working mode while diving into the complex subject of dementia. Starting with collaborative research resulted in the first basic insights in dementia and light. The scientific topics on hormones, lumen and day/night rhythms were quickly introduced through literature[4]. The first intuitive feeling on these subjects was the limitation by the fixed possibilities of light therapy. Therefore the next step was to focus on the stimulation of a brain healthy lifestyle by active and social support[5][6]. This theory of cognitive reserve was much more

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appealing to the feelings of interest and design opportunities since a lot of creativity was still possible. To continue exploring all the gathered information got visualized through a post-it brainstorm that shaped the subject and stimulated to coming up with ideas. One of these ideas was chosen to work out further. First the intention of the idea was visualized with drawings and tangible pictures. Based on the research of stimulating social interaction certain choices and assumptions were made.


Within the concept of ‘familiar family’ that research on stimulating social interaction is integrated. The piece of jewelry in combination with a photo book could help dementia patients remember their closest family, friends and caregivers for a longer time. By triggering their memory through a light the concept can improve the self-esteem of the dementia patient.

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CLIENT FEEDBACK It is essential to communicate the first insights to the client. This kind of communication is important for both parties in order to understand in what way they can be meaningful towards each other. In this first meeting the essence was to see what the contribution of these people could be to the project and how these professional saw the collaboration with designers. The steps of thinking were presented trough the results from the pressure cooker and explaining the clear view on the division between all the light therapy and affecting mood parts of helping people with dementia. This was necessary to find out what the thoughts and expertise were on these directions. With the feedback on the pressure cooker concept it became clear how the expertise and way of thinking of the client could be of value. As expected there were some question marks on the whole concept of using light to help people with dementia

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remember their family members. It was pointed out that it is hard to proof if you can make people with dementia learn something, even if you start with it in an early stage. This is a process that takes time to validate. Besides that it is not excluded that the light that is used to remember the family members has another negative effect on these mentally ill people. For example it is known that the color red is related to agitation, increased hart rate, respiration and brain-wave activity, while blue is known as a relaxing color. All this would be brought to an artifact where people are not familiar with. It is determined that it is hard for people with dementia to integrate new objects or services in their daily lives once they are in a certain stage of the disease. Because of these implications it was suggested to take a step back and focus on reminiscence as a basis of the design direction in order to help focusing on a smaller part of the degradation process.


BENCHMARKING There is already a wide range of products for people with dementia. They vary from very simple reminding methods to complete domestic monitoring. With doing a benchmark on these kind of products the way of thinking could be directed in order to make design decisions. In a visual and tangible way

the three categories ‘prompts & reminders’ ‘communication’ and ‘leisure’ were filled with several products that could positively contribute in a daily situation[7]. After a complete overview was created there needed to be gathered extra background information on the six products that fitted the best in the scope of earlier research insights. It became clear that these products were all connected to the theory of reminiscence[8]. The conclusion towards this overall aspect of the benchmark was an extra conformation that designing something purely based on light therapy is not necessary to help people with dementia in their daily life.

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FIELD RESEARCH I To get a grasp on the way of thinking, behavior and daily activities of the target group care home ‘Vitalis Vonderhof’ was visited. Within these scopes the different phases of the disease and the connection between the caregivers and the people with dementia could be observed. While remembering the people who did not attend to the morning gymnastics that they were invited to drink coffee and read the paper together, it became clear that the attitude of the people in the care was to stubborn to admit that they had forgotten the exercises. This characteristic development is different for every patient with dementia and therefore everyone needs a different approach during the evolvement of the disease. During the coffee meeting, when the caregiver was reading the paper for the residents it was interesting to see how this way of sharing information triggered memories from long time ago. This trigger resulted in a tangle of stories in which everyone wanted to

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point out their own experiences. It was also shown that these triggers can vary from subjects like sexual abuse in the church, which provoked emotional reaction, to humorous subjects like the mischievous and frolic past of one of the residents in order to reminisce. Besides this remembering aspect the coffee meeting also pointed out that the active social support is very stimulating and therefore positive for people with dementia.

INSIGHTS: * active social support in combination with remembering has positive effect on people with dementia


FIELD RESEARCH II A second day of field research was necessary to gain more experience with the target group and get more input from experts. This time it was not a care home but a daycare that was visited. The activities done in a daycare are more in line with the project scope since they are continuously based on social day activities. It became very clear that some people are in a stubborn form of denial and can be very picky on one another. During the first memory-training session there was the possibility to ask questions. By doing this it appeared that many

“A woman with communication problems was able to sing complete sentences.”

these people under the age of 65 were still able to remember things from long time ago and also like to talk about that with their children and grand-children. Unfortunately it seemed that simple games can be already too difficult. The next person often already forgets what the person before him or her said. However it was remarkable that, with a little help, most of the participants of the session were performing much better during a game about historical and cultural aspects of the province. By playing old LPs it could be concluded that the colorful covers and song titles were the right visual triggers to remember a song and/or artist. One woman was not able to normally communicate with others but as soon she heard a familiar lyric she could sing complete sentences. Furthermore it was confronting to see how the disease results in childish behavior when playing with percussion instruments. On the other hand this showed with how little input you can make these people happy.

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IDEATION PROJECT FOCUS The input of all the previous experiences was used to make an overview of the exact project focus. With a checklist of keywords that were based on the goal of the project and research input future concepts could be validated. The pie chart in the infographic shows the four fields of major stimulation and their relationship to each other. Based on these fields and the “Questionnaire on Quality of Life in Dementia That Was Administered Among the Professional Caregivers” [9] four different forms of support were chosen; social care network-, activity-, memoryand visual support. These direction became the basis for the future concepts that needed validation in order to be presented to the client.

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DEMENTIA PROGESSIVE DISEASE 1

A NEW LIGHT ON DEMENTIA

12-03-2013

DPM82 TOM VAN ‘T WESTEINDE

IN 4 PHASES 3

2

PROJECT FOCUS/DIRECTION

4

FOCUS ON THESE STAGES

GOAL:

HELPING PEOPLE WITH DEMENTIA TO IMPROVE THE QUALITY OF LIFE IN THEIR HOME ENVIRONMENT.

VISUAL PROBLEMS DAILY ACTIVITY

SOCIAL ACTIVITY

10% 20%

45% 25%

AMNESIA

SOCIAL CARE NETWORK SUPPORT

ACTIVITY SUPPORT

KEYWORDS: SELF-ESTEEM, SELF-IMAGE, ATTACHMENT, SOCIAL RELATIONS, ENJOYMENT OF ACTIVITIES, LEARNING CURVE, HOME ENVIRONMENT, INDEPENDENCE, STIMULATION.

MEMORY SUPPORT

VISUAL SUPPORT


DEMENTIA WORKSHOP By organizing a workshop on dementia with students from the Fontys the process could be enriched with new input. Therefore it was necessary to steer this workshop in a direction that fitted to the personal project scope. While brainstorming it was pointed out that there were not many opportunities with light therapy and the mindset was pushed into the direction of interest. The personal experience from the other students became import input for further brainstorming that could be connected to the insights gained through research. That new knowledge turned into the concretization of the learning-phase / trigger-phase theory. This direction is based on the conviction that it is possible to let the people with dementia create certain stimuli in an early phase of the disease that could be used in a later stage to provoke memories from the past. This theory was argued with a concept of a game that could be created on this first phase and played in the second phase. With a visualization of an iPad application the concept could be communicated and together with argumentation the feedback of the other students and experts could be taken into account.

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MID-TERM CONCEPT For the mid-term presentation two concepts based on the insights that were gained were worked out. By doing a quick recapitulation the these insights could be translated into design decisions. The information that was gathered during these steps resulted in three clear directions. The first direction from the pressure cooker focused on prolonging remembering of people in a close environment. The second direction came forth from research and focused on how people with dementia could express themselves to their caregiver. The last direction was derived from the workshop and focused on the theory of reminiscence. The two most confident directions were substantiated with personal motivation, experiences and feedback from other meetings. The overarching idea for these concepts was based on the learning/trigger theory that was retrieved from the workshop. The first light concept that came from the pressure cooker

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was tweaked within this theory and presented together with the game concept that was presented during the workshop. The feedback from the experts was well funded and the preferences were clearly motivated. The acknowledging of the second concept confirmed the potency and the way of thinking. Furthermore the learning/trigger theory was very well received and translated into a co-creation/sharing theory as a base for the further development of the concept.

INSIGHTS: * potency of acknowledged.

concept

* learning/trigger concept translated into cocreating/trigger theory. * creative game element needed to eleborate on the concept * contextualisation needed to generalize concept.


THEME DAY The theme day presentation was used to get an extra confirmation on the further developed aspects of the concept. With an image board it was explained how the learning/trigger theory could be translated into a co-creating/sharing theory. This was supported by a short scenario. This scenario told the story of a man who used to love to play soccer. Therefore he and his granddaughter visited the fan-day of PSV. The pictures that were made on that they were used to be placed in a pop-up book and used as a 3D reminiscence tool to retrieve memories in a later stage of the disease. The feedback of this concept was partly focused on the realization of the concept which was required to continue the project. With that the first ideas about the implementation of a toolbox/game raised together with the confirmation of the social and triggering aspects. It became clear that it was necessary to elaborate on the playfulness/creativity of the concept. Therefore a 360 degree view around a user had become essential. With that first person perspective and the family all the requirements that are needed could be mapped in order to work out the concept. After these cocreation there could be zoomed out and these requirements could be generalized into a concrete form.

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EXPLORING IN CONTEXT EXPERT MEETING The expert meeting with ergotherapist Annemarie Bolder from the European Reminiscence Network [10] was necessary to develop the concept. The European Reminiscence Network arranges courses for people with dementia and their informal caregivers to improve the understanding and bonding among these people[]. For the concept it was important to know in what way general memories could be translated into personal memories. It seemed that is often easy for people with dementia to link daily activities to situation of their past. Their imagination works fine and they can empathize themselves in a general

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CO-CREATION I situation with certain artifacts. It was also pointed out that is important to carefully formulate question by preventing failure. With too direct and factual questions the person with dementia gets confronted with their own decadence since they are not able to answer such questions directly. Besides the reminiscence part the social aspect when collecting memories is just as important. Listening to someone’s story can be very relieving for that person. Taking people into their imagination through sensory stimulation while descriptively reaching towards an answer is the best way to reminisce.

As an import development aspect of the concept a cocreating session was arranged. This was needed to determine the requirements. Through a daycare it was possible to arrange a meeting with a man who had vascular dementia since he suffered from a cerebral stroke almost twenty years ago. As a start there was a physical timeline placed in from of the man which was divided into the three categories; alone, together, and social. By the use of a semi-structured interview the experiences of the person with dementia were described on this timeline. Supported with tangible pictures and post-its this man told everything about


his work, wife, children and family. Many of his experiences were linked to his passion for cooking and this became the central subject of the session. As noticed by the expert it was import to avoid factual question to keep the conversation going. It was remarkable to see how this man was able to remember complete streets and house numbers even from his teacher in elementary school and how he could like events in the present to the past. Furthermore it was interesting to see with how much openness and joy this man told about his past. Also the less pleasant things in life like death, money issues and family conflicts, and the diagnosis of dementia were brought under the attention during the session. All together the session gave a good insight in what has shaped this men into the person he sees himself now.

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CO-CREATION II The next step in these cocreating session was an open discussion with the daughter of the man with vascular dementia. This was done to see the similarities and discrepancies of two different perspectives on one life. The gather information on the timeline was shown to this person. The first remarkable thing was that she saw events on this timeline that she never heard of before. This was the first indication for the tension within the relationship between the man with dementia and his daughter. During the session more and more confidential information was shared and more and more differences between the stories became visible. It was both shocking and interesting to see how these differences are influential for the relationship between these people. These tensions in that relationship are again influential for the way how they are coping with the

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CO-CREATION III aspect of dementia. It results in lack of understanding and incomprehension while the daughter is trying to help her father. This session became an contextual eye opener that was very valuable for further decision making.

INSIGHTS: * misunderstanding tensions between father and daughter because of the past. * incomprehension because of the lack of understanding each others intentions. * social aspect very valuable for person with dementia. * person with dementia need higher authority to stimulate conversation.

In order to get a full perspective on the man with vascular dementia it was necessary to talk with a third person. This woman is a caregiver at the daycare this men is going to several days in a week. It was important to know if this woman is aware of the situation of the man with dementia and the relationship with his daughter. And if this is the case, does she sees herself as the mediator to talk about these tensions. The woman pointed out that it is very important for her to be an anchor of thrust for this man. She wants to be a person where people can share their difficult stories but she does not sees herself as the person to mediate between the man and his daughter in order to ‘solve’ their problems. When situations get to a point that there need to be serious intervention she will contact the GGzE who will take steps if the situation can no longer continue.


OPEN DESIGN SPACE The OpenDesignSpace ‘What Remains’ was a collaborative research mini-project in which there was focused on starting communication by breaking the gaps between the memory and present thoughts of people with dementia. This fitted perfectly within the project scope. The four sessions at the Design Academy were an inspirational addition to the project and gave insight in new research methods that can be used when working with a difficult user group like people with dementia. Furthermore it supported and validated several aspects of the concept. The connections between several stories of other students resulted in a research question that was very well applicable to the conceptual way of thinking.

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CONCEPT DEVELOPMENT CONCRETIZATION The connection between all the activities became the input for the final design. With this user generated information it was possible to validate certain assumptions. The main question out of these assumptions was; ‘How can dementia patients visualize the past in order to communicate in the future?’. Based on the experiences of the past three general requirements came forward in order to design for people with dementia: 1. Translate activities/hobbies/interest of their past into an occupation in their daily life. 2. Break the gaps between their memory and present thoughts. (Reminiscence) 3. Stimulate mental en physical activity in a social context by persuasive design. With fulfilling these requirements the final design can provide a service that describe who and what these people has shaped and what they have experienced and achieved. It will visualize the life of the person which then can be used for other/new caregivers to provide the right form of care.

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CREATIVE ELEMENTS With the requirements in mind the next design steps could be taken. It was decided that the service would contain a toolbox, not a game. Especially in the early stages of dementia a service that would be called a game can be translated into something childish. In combination with the denial aspect of the disease this would not be logical. The toolbox however does stimulate creativity. The outside of the box is painted with blackboard paint so it can be customized. This is based on the reminiscence aspect of a slate and chalk that was often used at primary schools long time ago. The box contains a board that is divided in three categories, like the timeline that was used for the co-creation. The time line aspect is removed due to lack of importance. It is not relevant for a person with dementia to know when exactly something happened because they will not remember that anyway. Together with the board comes the turntable, inspired on the one that is used in game called PimPamPet. For each category a plate with icons can

be placed on the turntable and used as a conversation starter. The mirror in the box is used to reflect both literally and figuratively. It can be used to let the person with dementia reflect on themselves and how they have seen themselves changing over the years. It can also be used to decorate with personal visuals and used to reminisce about a past outfit like a chef for example. On the board pictures can be attached. This can be done by paperclips that are attached on the board. While reminiscing these pictures can help as trigger. Furthermore to box contains a set of creative tools like pencils and post-its to add additional information to the board which can also help remembering. One of the import ingredients is the polaroid camera. This camera needs to be used when there are social activities done by the person with dementia and family or friends. This camera gives immediate visual and tangible output that can be added to the board. Finally the box contains a guide with a scenario that describes how the toolbox can be used.

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FINAL DESIGN

‘Dit ben ik.’ ‘Dit ben ik’ is a service that contains a toolbox which is used to creatively visualize the past of a person with dementia. This information is used to stimulate physical and mental activity in a social context. By collecting these activities as new memories the toolbox makes helpful information accessible in an active and creative way when there is a next step of care needed.

For the guideline/scenario see appendix.

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“There was a man who was very restless and agressive during the night but his caregivers were not able to communicate with him. After a while, when talking to one of his children they found out he used to be a night guard. They gave him a torch and allowed him to check the locks and doors in order to give him some peace.”

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RECOMMENDATIONS For the future development of this service there are several steps to be taken. The toolbox is ready to go into a first test phase. Through validating in context it can be seen which parts part work surprisingly well and which parts do not. These different parts of the concept can then be improved and tested separately. Since the concept is based on a limited amount of experiences this is needed in order to be able to generalize the design one step further. There is contact with professionals to get this first test phase started. The sensory stimuli of the toolbox need another iteration. For now the service provides ways to trigger mainly visual information. Would it be useful to add auditory stimulation by the use of a recorder and is it necessary to add a collection of tangible material that can help to reminisce? This can be considered after the design comes out of the first test phase. Furthermore the service can be connected to other designs as well. The abstract sensory stimuli that are given by the project of one of the other students through light visuals can be combined with this design in order to be valuable to the reminiscing process. Finally a digital iteration can be done. There is deliberately chosen to not integrate technology in this design because of the believes that this generation of people with dementia are not ready for such interventions. However, when looking further to the next generations the features that are now provided through the toolbox can be translated into, for example, iPad application.

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ACKNOWLEDGEMENTS I would like to thank a few people for supporting me during the project. First of all thanks to my team, Richard and Nina, for all the help, fun and motivation that was necessary during collaborative working. Furthermore I would like to thank all the experts at the daycare, care homes, DesignAcademy and GGzE that were so kind to invite me to their work and shared their knowledge with me. Many thanks to Rens Brankaert, the PhD students who was always prepared to arrange a meeting, give feedback and made sure I stick to the planning. And of course special thanks to my coach Wina Smeenk. Who without I would never be able to do such a satisfying project. Thank you for all your constructive feedback that overwhelmed me every week, for your professional opinion, your knowledge and especially thank to your joyful stimulation that made it into a pleasant collaboration.

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REFLECTION It was necessary to change my mindset in order to design for this kind of user group. Since my personal development plan states that I want to focus on the experience of the user it was important that I learned to become an empathic designer. If I wanted to design for people with dementia I needed to do much more practical research in order to understand that user group. Through the process it became visible to me what my role as a designer is in such a socially relevant issue. By zooming out I learned how to make connections between experiences and use these insights to design. To add to that I learned new ways of interacting with user. By co-creating with users instead of only observing I was able to see new perspectives on user generated information. I also set as a goal to deliver a product or service that would be ready to use. This is one of the reasons that I avoided using electronics. I did not want to limit myself by my technological skills and not be able to have a finished design at the end of the semester. Designing this service gave me the possibility to fully explore in the field of dementia and use that information to design something relevant without technological issues holding me back, as I experienced last semester.

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Furthermore I say in my personal development plan that I want to pay attention to appearance. Not only for the final design but through the whole process of the project I was able to improve my visualization skills. By communication through infographics, designing presentations and collecting input (co-creation) I used these skills beneficially. Working with a client is for me a positive aspect. Besides the fact that this project is very valuable for society, having a client is an extra motivator. I was made aware of my role as a designer and what my value can be for others. The deadlines and feedback stimulate me through the process and help me validating certain aspect while designing. Through weekly coach meetings and constructive feedback I felt more confident about a project than ever before. Being stimulated by the level of expertise I learned to reflect more often on my choices and see where I stand within a project.

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REFERENCES 1. The definition of dementia

http://www.mdguidelines.com/dementia/definition 2 Different types of dementia

Medical Research Council Cognitive Function and Aging Study (2001) 3. World Health Organization

http://www.who.int/features/factfiles/dementia/ en/ 4. Natural News

http://www.naturalnews.com/024826_dementia_ patients_melatonin.html 5. Cognitive Reserve

http://en.wikipedia.org/wiki/Cognitive_reserve 6. Living with dementia

http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=731 7. Assistive technology for people with dementia

http://www.atdementia.org.uk/productSearch. asp?page_id=16

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8. Reminiscence therapy for dementia

Woods B, Spector A, Jones C, Orell M, Davies S. Dementia Services Development Centre Wales 9. Questionnaire on Quality of Life in Dementia that Was Administered Among the Professional Cargegivers

American Journal of Alzheimer’s Disease & Other Dementias ? Vol. 22, NO.3, June/July 2007 10. European Reminiscence Network

http://www.europeanreminiscencenetwork.org/

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APPENDIX GUIDELINE SCENARIO

Intro duct ie Welkom bij de werk-set “Dit ben ik”. Dit hulpmiddel is bedoeld om mensen met dementie en hun mantelzorgers aan te sporen tot het doen van activiteiten in een sociale context. Verder kunnen met behulp van een derde persoon, bijvoorbeeld een zorgtrajectbegeleider, bepaalde spanningen tussen de persoon met dementie en mantelzorger onder de aandacht worden gebracht. Het gehele concept is gebaseerd op reminiscentie. Deze theorie gaat er van uit dat ‘gedachtes aan een verschijnsel in het verleden kunnen worden opgehaald met een huidige waarneming’. Alle middelen in de werk-set zijn bedoeld om herinneringen aan verwerkte ervaringen op te roepen en deze vervolgens mondeling, schriftelijk of beeldend vast te leggen. Verder is het gebleken dat het voor mensen met dementie essentieel is om mentaal en fysiek actief te blijven. Door deze vorm van stimulatie blijven de hersenen geprikkeld en dit heeft een positief effect op de vordering van dementie. De werkwijze is opgebouwd uit verschillende niveaus. U gaat proberen herinneringen op te halen met betrekking tot de persoon met dementie zelf, de nauw betrokkenen van de deze persoon en verdere sociale activiteiten. Het is helemaal niet verkeerd om over de toestand van de persoon met

dementie te praten. Dat betekend echter niet dat u het dement worden moet benadrukken. Het kan daarentegen wel helpen te praten over de ervaringen van de persoon met dementie en hoe hij of zij vind dat ze veranderd is ten opzichte van vroeger. Omdat de ziekte zich zo persoonlijk voor iedereen ontwikkelt is het aan u om af te tasten wat wel en niet werkt voor de persoon waarmee u deze werk-set gebuikt. Het kan bijvoorbeeld zijn dat de persoon met dementie het creatieve proces in eerste instantie niet bij hem of haar vind passen. Geef dan aan dat deze stimuli optioneel zijn voor de persoon met dementie. De mantelzorger of zorgtrajectbegeleider kan in eerste instantie het initiatief nemen voor het visueel vastleggen waarbij eerst alleen gefocust word op het gesprek met de persoon met dementie. Met behulp van een scenario word de werkwijze van de werk-set uitgelegd. U word voorgesteld aan 4 verschillende personen die ieder hun eigen rol spelen in het gebruik van dit hulpmiddel. Met behulp van 5 icoontjes kunt u zien wat voor soort stimulatie een rol speelt bij iedere fase van de werk-set. Probeer met het behulp van het scenario en bijvoorbeeld de zorgtrajectbegeleider te bepalen welke aanpak het beste werkt voor U en de persoon met dementie.

36 Tom van ‘t Westeinde s104815 - B2.2

Het potlood staat voor creativiteit. Hiermee worden aangeduid dat het de bedoeling is samen beeldend gespreksmateriaal vast te leggen. Het spraakwolkje staat voor conversatie. Voor de meeste stappen is het belangrijk dat er met veel gesprekken plaatsvinden met de persoon met dementie en de mantelzorger. De boom staat voor activiteiten. Aan de hand van de opgehaalde herinneringen kunnen weer nieuwe activiteiten voor de persoon met dementie en zijn of haar mantelzorger georganiseerd worden. Dit icoontje symboliseert de draaischijven. Hiermee wordt aangeduid wanneer de draaischijven gebruikt kunnen worden tijdens het proces. Dit icoontje staat voor de onderlegger. Deze staat centraal in verschillende fases van de werkwijze en word op deze manier aangeduid.


SC E NARIO E v e n vo o rst e l l e n . . .

G r e et 7 1

hen ja 43

Zorgtrajectbegeleider

Dochter van Greet

Bij Greet bevind zich in het diagnose proces van Alzheimer. Ze woont nog alleen thuis en haar man is twee jaar geleden overleden. Greet komt uit een gezin van zes kinderen waarvan vier broers en twee zussen. Met een katholieke opvoeding heeft ze de huishoudschool gevolgd en vervolgens doorgeleerd voor plooister. Dit heeft ze gedaan totdat ze trouwde moeder werd van 3 kinderen. Na zeventien jaar als huismoeder thuis gewerkt te hebben is ze nog begonnen als verkoopmedewerkster in een kledingzaak in de stad. Greet heeft altijd een passie gehad voor mode en zat vaak in haar vrije tijd achter de naaimachine. Verder is ze op latere leeftijd nog bij een zangkoor gegaan om haar muzikaliteit kwijt te kunnen.

Voor het diagnoseproces van Greet is Henja aangewezen als haar zorgtraject begeleider. Henja heeft veel contact met de huisarts en geriater van Greet en heeft sinds kort ook kennis gemaakt met haar dochter. Ze kent Greet echter nog niet zo goed. Sinds het proces van de diagnose gestart is hebben ze nog niet echt de tijd gehad om eens goed met elkaar te praten. Het is belangrijk voor Henja om een goed inzicht te hebben in de thuissituatie van Greet. Met het persoonlijk verhaal van Greet kan Henja emotionele steun geven en dienen als vertrouwenspersoon om zo de juiste zorgmogelijkheden aan te bieden.

Moniek is de jongste dochter van Greet en de enige van de drie kinderen die nog in Nederland woont, in dezelfde stad als haar moeder. Ze is al enkele jaren gescheiden en woont samen met haar zoontje Pim. Ze werkt twee dagen in de week op het gemeentehuis en 1 dag als interieurverzorgster. Moniek heeft niet altijd een goede band gehad met haar moeder. Ze heeft een vrij strenge opvoeding gehad en is tot op late leeftijd vaak de les gelezen door haar beide ouders. Verschillende familieruzies over financiële zaken hebben hier niet positief aan bijgedragen. Daarbij is het onbegrip dat is ontstaan sinds het diagnoseproces van haar moeder niet bevorderlijk voor de onderlinge communicatie. Moniek probeert haar moeder haar met kleine dingen te helpen zoals boodschappenlijstjes schrijven. Haar moeder kan deze dingen nog niet goed accepteren en wijst daarom alle hulp af. Pim kwam altijd graag bij zijn opa en oma om spelletjes te doen. Sinds zijn opa is overleden komt hij minder bij zijn oma door zijn moeder.

Mevrouw met dementie

Mon iek 37

PI M 6

Kleinzoon van Greet

37 DPM 82 - A New Light On Dementia - “Dit ben ik”


I n k i j kg e s p r e k k e n

Henja gaat in gesprek met Greet om haar wat beter te leren kennen. Dit gaan ze doen met behulp van het de grote onderlegger en de draaischijf. Henja heeft van te voren gevraagd of Greet foto’s van vroeger mee kan nemen om zo makkelijker herinneringen naar boven te halen. Ze vouwen de onderlegger uit op tafel en plaatsen de draaischijf in het midden. Iedere groene schijf hoort bij een van de categorieën; ‘ikzelf’, ‘familie & vrienden’ of ‘mijn bezigheden’. Greet kiest zelf met wat voor categorie ze wil beginnen. De icoontjes op de schijven zijn bedoel om een gesprek over een bepaald onderwerp te starten. Dit betekend niet dat het alleen over dat onderwerp hoeft te gaan.

De foto’s die Greet heeft meegebracht worden gebruikt om met een paperclip of punaise aan de onderlegger bevestigd te worden. Henja zal bij die foto’s verschillende steekwoorden opschrijven die helpen bij het herinneren. Op deze manier probeert Henja een beeld te krijgen van de ervaringen die Greet hebben gevormd tot wie ze nu is. Hierbij is het erg belangrijk dat ze ook inzicht krijgt in de persoonlijke voorkeuren van Greet zoals muziek en smaak en deze ook opschrijft. Deze zijn voor een later stadium noodzakelijk. Greet en Henja werken op deze manier aan hun vertrouwensband. Daarbij komen ook de persoonlijke en emotionele kanten van het leven naar boven komen. Denk hierbij aan familie conflicten, dood, geloof en geldzaken. Ook de veranderingen die zichtbaar worden sinds Greet aan het diagnoseproces moeten behandeld worden. Hiervoor gebruikt Henja de spiegel uit de werk-set. Door deze Greet voor te houden vraagt ze om zichzelf te beschrijven en hoe ze vind dat ze veranderd is door de jaren heen. De spiegel kan ook op een creatieve manier gebruikt worden. Door samen met Greet bijvoorbeeld haar vroegere werk kleding of favoriete outfit te maken en deze op de spiegel te bevestigen kunnen weer nieuwe herinneringen opgehaald worden. Al deze stappen kunnen in verschillende sessies verdeeld worden tot dat Henja een compleet overzicht heeft over het leven van Greet.

38 Tom van ‘t Westeinde s104815 - B2.2

Door het inkijkgesprek met Moniek kan Henja de andere kant van het verhaal aanhoren. Al het beeldmateriaal dat is verzameld samen met Greet krijgt Moniek ook te zien. Henja gaat vervolgens in discussie met Moniek over het verhaal dat Greet verteld heeft. Op deze manier komt Henja te weten hoe Moniek het leven van haar moeder ervaren heeft. De algemene dingen over haar werk als plooister en verkoopmedewerkster komen aan bod maar ook verhalen waar Moniek nog nooit over gehoord heeft zoals eerdere relaties van haar moeder. Greet heeft het hierover nooit gehad met Moniek. Henja komt er achter dat Greet nooit veel persoonlijke dingen van vroeger met Moniek heeft

gedeeld. Ze verteld aan Henja dat ze vind dat ze vrij streng is opgevoed. De opvoeding van Greet, waarbij respect voor beide ouders een grote rol speelde, is lang nagestreefd door Greet en haar man ondanks de veranderingen in de maatschappij. Greet vond haar dochter erg lastig tijdens de puberteit terwijl Moniek vind dat ze achtergesteld werd ten opzichte van andere kinderen. Toen de oma van Moniek overleed is er wat gedoe geweest over het testament. Hierdoor is er ruzie geweest tussen Greet en haar broers en zussen. Henja wist wel dat er iets aan de hand was met het testament maar niet dat dit tot een familieruzie heeft geleid. Dit betekende dat Moniek daarna weinig contact had met haar ooms en tantes. Sinds Moniek begon te vermoeden daar haar moeder steeds meer dingen begon te vergeten zijn de spanningen wat hoger opgelopen. Greet zegt tegen Henja dat ze nog best alles zelf kan maar Henja hoort van Moniek dat ze regelmatig thuis komt met de verkeerde boodschappen. Greet wil dit echter niet makkelijk toegeven en wijst alle hulp van Moniek af. Het verhaal van Moniek zorgt ervoor dat Henja een realistischer beeld krijgt van de situatie van Greet. Dit gaat helpen bij de volgende stappen in het proces.


D r a a i sc h i j v e n Hiernaast bevinden zich alle icoontjes die ook op de draaischijven zijn weergeven. Iedere draaischijf hoort bij een bepaald vak op de onderlegger en wordt gebruikt door Henja om gesprekken te starten over het leven van Greet. De draaischijven behoren ieder tot een categorie op de onderlegger. De eerste kolom bevat de icoontjes voor de categorie ‘Ikzelf’ de tweede kolom voor de categorie ‘Familie & Vrienden’ en de laatste kolom voor ‘Mijn Bezigheden’.

G E LO O F

H uw e l i j k

hobby

P r e stat i e s

hu is dieren

muziek

O pvo e d i n g

Gezin

f e e st da g e n

School

c o n f l ict

reizen

Geldzaken

Hu ishouden

h i sto r i sc h e g e b e u rt e n i s s e n

werk

Vr ienden

f e e st e n

39 DPM 82 - A New Light On Dementia - “Dit ben ik”


E va lu at i e g e s p r e k

Nadat Henja met zowel Greet als Moniek sessies heeft gehad zal ze proberen in gesprek te gaan met beide personen. Hierbij is het nodig dat Henja met name de vertrouwensband met Greet niet breekt en alle stappen die ze onderneemt met haar overlegt. Tijdens het evaluatiegesprek zal Henja het over verschillende dingen gaan hebben.Ten eerste bespreekt ze hoe beide personen de gesprekken ervaren hebben. Na de leuke dingen te hebben besproken zal Henja ook voorzichtig de minder leuke kanten van hun relatie proberen te bespreken. Ze kan hierbij kijken hoe er met de spanningen word om gegaan als ze er beide mee geconfronteerd worden. Henja merkt inderdaad dat Greet niet graag aan haar dochter toe geeft dat ze mentaal achteruit gaat. Het is nu niet aan Henja om dit probleem meteen op te lossen. Henja gaat wel proberen op basis van de eerdere inkijkgesprekken meer binding tussen Greet en Moniek te krijgen. Ze doet de suggestie om samen een activiteit te ondernemen. Omdat Greet altijd een passie heeft gehad voor mode stelt ze voor om een dagje naar het textielmuseum te gaan.

40 Tom van ‘t Westeinde s104815 - B2.2

Act i v i t e i t

Henja heeft ook voorgesteld dat Pim mee gaat naar het textielmuseum. Het is voor Greet belangrijk dat ze in contact blijft met haar kleinkind en Pim kan als afleiding zorgen dat de situatie tussen Greet en Moniek niet ongemakkelijk wordt. Het is niet de bedoeling van de activiteit om Greet en Moniek met elkaar te confronteren. Het dagje uit moet ervoor zorgen dat ze samen een leuke dag hebben. Voor Greet is de sociale en actieve stimulatie belangrijk en Moniek werkt (onbewust) aan de band met haar moeder. Tijdens de activiteit is het belangrijk dat Moniek de leuke momenten vast legt. Hiervoor heeft ze de camera uit de werk-set meegenomen. Ze zet regelmatig haar moeder op de foto samen met objecten uit het textielmuseum en samen met Pim. Door de polaroid camera heeft ze gelijk een tastbare herinneringen die eenmaal thuis op de onderlegger toegevoegd kan worden. Tijdens het toevoegen van de foto’s word de dag nogmaals besproken en er wordt eventueel extra geschreven materiaal toegevoegd. Zo word de onderlegger steeds persoonlijker en komen er steeds nieuwe herinneringen bij die gebaseerd zijn eerdere levensgebeurtenissen.

!

Wees er van bewust dat de activiteit een terugkerende aspect is van de werk-set. Henja zal in haar maandelijkse sessies individueel met zowel Greet als Moniek evalueren hoe deze activiteiten verlopen. Het is echter de bedoeling dat het initiatief voor de activiteiten steeds meer van Moniek komt. Daarbij hoeft niet alleen Moniek mee voor deze activiteiten maar ook oude vrienden, kennissen en buren van Greet kunnen bijstaan in het activiteitenproces. Greet heeft op deze manier variërend sociaal contact. Ze kan bijvoorbeeld met oude vrienden terug de locatie van haar lagere school of met buren naar een uitvoering van het koor waar ze altijd deel van uit maakte.


Z e l f a a n d e s l ag

3 j a a r l at e r

? De werk-set bevind zich in alle tijden bij Greet thuis. Na de actieve observatie periode van Henja is het tijd voor Moniek en Greet om zelf verder te werken aan de onderlegger. Als zorgtrajectbegeleider kan Henja slechts maandelijks een bezoek brengen aan Greet en Moniek. Dit is echter goed voor de band tussen Moniek en Greet.Terwijl de werk-set thuis staat kan Moniek deze gebruiken om herinneringen op te halen met behulp van de draaischijf en onderlegger. Greet kan dit ook doen samen met Pim om zo een bezigheid te hebben met haar kleinkind.Verder is het belangrijk voor Greet dat ze ook vraagt om aan vrienden, kennissen en buren om haar te helpen met herinneren. Hierdoor krijgt Greet veel sociale stimulatie. De band tussen Moniek verbeterd ook op deze manier. Greet kan makkelijker hulp accepteren en Moniek hoeft niet meer alleen vanuit schuldgevoel haar moeder te hulp te schieten. Moniek regelt nu verschillende actieve uitstapjes voor haar moeder die daar veel plezier uit haalt. Eens in de zo veel tijd wordt dit nog geëvalueerd met Henja.

Door deze regelmatige evaluatie houd Henja overzicht op de situatie tussen Greet en Moniek. Ook zij merkt dat Greet makkelijker iets van Moniek aan neemt. Over de problemen van vroeger wordt af en toe nog en dit gaat steeds gemakkelijker voor Greet. De onderlegger van de werk-set heeft zich ondertussen steeds verder uitgebreid en bevat een uitgebreide beschrijvingen van Greet haar leven. Door zowel lichamelijke als geestelijke beperkingen heeft Henja voorgesteld aan Greet om in een verzorgingstehuis te gaan wonen. De werk-set vol herinneringen gaat mee naar de nieuwe huisvesting van Greet. Hier kan Greet met haar nieuwe zorgverleners al deze verzamelde herinneringen terughalen. Op deze manier krijgen deze nieuwe zorgverleners een beeld van Greet als persoon en kunnen ze haar de juiste verzorging en begeleiding aanbieden. Moniek en andere kennissen kunnen nog steeds helpen bij het terughalen van de herinneringen. Dit gebeurt nu alleen op een meer passieve wijze.

41 DPM 82 - A New Light On Dementia - “Dit ben ik”


a a n d e s l ag

Nu is het tijd om met behulp van het scenario en een derde persoon uw eigen situatie vorm te geven. Kijk op wat voor manier u zichzelf kunt verplaatsen in de situatie die hier beschreven werd en op wat voor manieren u kunt werken aan het herinneringenproces. Begin op tijd met het verzamelen van oude foto’s en misschien wel voorwerpen die veel betekenen voor de persoon met dementie. Dit helpt bij de beeldvorming voor de derde persoon.Verder is het belangrijk dat u zich open stelt om op een creatieve manier een positieve bijdrage te leveren aan de persoon met dementie. Probeer positief herinneringen op te halen en geruststelling te geven bij negatieve herinneringen. Focus op de dingen van vroeger die invloed hebben op het nu en probeer ook te genieten van de tijd die u samen deelt. Veel plezier!

42 Tom van ‘t Westeinde s104815 - B2.2


Dit ben ik 43 DPM 82 - A New Light On Dementia - “Dit ben ik”


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Final deliverable project A New Light On Dementia

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