Amarant. Encouraging the application of humour between informal caregivers and people with dementiaia. By Ilse Blom

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1 Amarant Encouraging the application of humour between informal caregivers and people with dementiaia By Ilse Blom

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3 Amarant Humour as a powerfull tool for informal caregivers of people with dementia Master thesis Design for Interaction Delft University of Technology August 2014 Ilse Blom jheblom@gmail.com Student number: Supervisory team Chair: dr. Valentijn Visch Mentor: Dr. Ir. Marieke Sonneveld Company mentor: Corry Aarts for DOT - De Wever, Tilburg

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5 I would like to start this report by expressing my thanks to all the people who contributed to my graduation project. Valentijn en Marieke, I would like to thank you for challenging me to reach beyond my comfort zone. Thank you for allowing me to find my own way, even though it sometimes took me quite some time. Corrie and Ben, I would like to thank you for your trust and genuine interest in both the project as well as in me personally. I have felt welcomed at De Wever from the first minute we met. I enjoyed working together on the presentations and posters and I am grateful for the chances I got to present our work. Jan, I would like to thank you for you openness and enthusiasm as well as for your support with the recruitment of participants for my user studies. You provided me with great insights and wonderful examples. All the informal caregivers who participated in my user studies, thank you so much for sharing a bit of your lives with me. I think the job you do in providing care for your loved ones is incredibly tough and I admire your strength and endurance. Jenn, Leonora, Dennis and all the other graduate students who joined one of many ideation and coffee sessions, thank you for sharing your creativity and insights and for motivating me at times I needed it most. Papa, mama, Sanne, I would like to thank you for your unconditional faith in me as well as your love and pride. Frank, I would like to thank you for your patience. Thank you for being there for me throughout the entire project. I know it has been a tough road but I could not have done it without you. Acknowledgement 5

6 Table of content Part I: Introduction 9 1. Introduction DOT: Dementie opleidings en trainingscentrum The project of humour and dementia Problem definition The assignment The project approach 14 Part II: Exploration Humour and dementia; a literature survey Humour The dementia syndrome Humour in the context of dementia and informal caregiving Key insights Humour in professional dementia care; an observational study Approach Method Results and interpretations Key insights 52 4 Humour and dementia in the home context; a contextmapping study Approach Participants and context Method Results and interpretations Identification of design opportunities 67

7 Part III: Vision Design goal Focus and direction Persusive game design Design goal Interaction vision Interaction vision Interaction scenario 87 Part VI: Conceptualisation Concept direction Capturing memories Tokens Display in the house Game elements Summary Concept proposal Concept elements Scenarios 100 Part V: Evaluation Concept evaluation Set-up Results Conclusions Implementations Recommendations Personal evaluation References Abstract Appendices 134

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9 Part I: Introduction

10 Introduction In this chapter an introduction to the graduation project is given. It will elaborate on the client as well as on the context and will state the assignment that was formulated as a starting point. Concluding it will briefly explain the general approach of the graduation project DOT: Dementie ondersteunings en trainingscentrum This graduation project is commissioned by DOT De Wever: Dementie ondersteunings- en trainingscentrum (Dementia support and training centre) and the Delft University of Technology. DOT is part of De Wever: an organisation in elderly care in Tilburg. DOT started as an initiative of De Wever in cooperation with the University of Tilburg, the municipality of Tilburg and Zorgvernieuwing psychogeriatrie (innovation in psychogeriatric care). The focus of DOT is to develop products and services that support people suffering from dementia as well as their professional and informal caregivers. Figure 1. The setting of Into D mentia s dementia simulator. Source: zorginnovatie.nl One of the products and services recently developed by DOT is Into D mentia: a simulation training for both professionals and informal caregivers (figure 1). Aim of this training is to deepen people s understanding of the clinical picture of dementia and by doing so enhancing the relationship between patient and caregiver. The simulation takes place in a kitchen scene and is guided by an audio recording functioning as the inner voice of the participant as well as by several interactive projections (figure 2). 10

11 Other projects in which DOT is involved are Tactile Dialogues and Vigour, both smart textile product-service systems. Tactile Dialogues is an interactive pillow designed to support and stimulate communication between dementia patients and their family. It contains various vibration motors that are responsive to touch (figure 3). Vigour is an interactive vest designed to stimulate physical exercise for rehabilitation by the use of stretch sensors and responsive sounds, while giving feedback about progression to both family and professional caregiver. Figure 2. An interactive projection on the table supporting the simulation. Source: ijsfontijn.nl Figure 3. Tactile Dialogues - an interactive pillow to support communication between dementia patients and their family. Source: fasiontech.coml 11

12 1. 2 The project of humour and dementia 1. 3 Problem definition This graduation project is part of a larger project of DOT called Humour and Dementia. DOT started this project a few years ago as the topic gained their interest in the course of the development of Into D mentia. During one of the focus group sessions it was brought forward that it should all be taken a bit more lightly; with a bit of humour. These suggestions triggered DOT into doing literature research on the topic of Humour and Dementia. As they experienced knowledge on this topic to be quite limited they were motivated to start the project Humour and Dementia and involve graduate students from several fields such as psychology and applied psychology. Currently, their main focus is to gain theoretical knowledge on the topic as well as on developing practical applications that could support people suffering from dementia and their caregivers. One of the current results of the project is a workshop to support and stimulate caregivers in the application of humour by providing them with theoretical knowledge on the topic as well as practical examples. Although this workshop has shown to be relevant and insightful for professional caregivers, until now not one informal caregiver has shown interest in participating. The setting of a workshop does not seem to be the right approach. Therefore the Humour and Dementia project is now focusing on finding a different approach for a practical application that can be used to support informal caregivers. 12 In the Netherlands, currently over people are suffering from dementia. Prevalence is expected to grow with at least 50% over the upcoming years, caused by ageing of the population as well as an increase in life expectancy of people suffering from dementia (Alzheimer Nederland, 2014).

13 70% of people suffering from dementia live at home and are provided care for by an informal caregiver. As the syndrome is progressive the situation is rather futureless. In combination with the personal relationship the informal caregiver has to the person suffering from dementia informal caregiving is an incredibly demanding job. As a result approximately 1 out of 10 of these informal caregivers experiences overburdening. Both the person suffering from dementia as well as the informal caregiver can benefit from the effects of humour as it, amongst other things, releases stress and can positively influence the relationship between the both of them. However, it does not seem to be easy for the informal caregiver to apply humour in interaction with the person suffering from dementia. Often heard statements from informal caregivers are: door de dementie is het lachen is ons wel vergaan (dementia has drained the smile of off our faces) and wat valt er nog te lachen? (what is there left to laugh about?). Possible thresholds for the application of humour in interaction with a person suffering from dementia have been suggested by previous graduate students in psychology at DOT. The first possibility is that the sense of humour of a person suffering from dementia changes over the course of the syndrome and therefore no longer matches the sense of humour in the informal care giver. In general humour within adult people is to a large extend dependent on language. As the cognitive abilities in people suffering from dementia decreases, their humour might become less dependent on language. This can cause the humour of dementia patients to be experienced as childish by their caregivers. A second possibility is that care givers might be afraid of using humour, as they think this might be offensive or inappropriate. A third possible reason is that general humour expression within people suffering from dementia decreases over the course of the disease. As described earlier DOT has developed a workshop for both professionals and informal caregivers to support and stimulate them in de application of humour 13

14 in interaction with the person suffering from dementia. However, although a workshop might work for educating professionals it does not show to be the right approach for the informal caregivers The assignment The assignment is to design and evaluate a persuasive game based product or product-service combination that supports and encourages the informal caregiver in the application of humour when interacting with the person suffering from dementia. The product will be aimed at the home situation. An increased application of humour can decrease the burden of the caregiving process by supporting the informal caregiver in coping. Furthermore it can enhance the relationship between the informal caregiver and the person suffering from dementia. This all together can positively influence the quality of life of the informal caregiver as well as of the person suffering from dementia. The target consists of informal caregivers of people suffering from mild to moderate dementia. Within these stages most of the people are intensively supported by an informal caregiver in a home situation The project approach The approach is an iterative, exploratory design process in which research and design are alternated. The process consists of three main phases being exploration, conceptualisation and evaluation. The emphasis lies on the exploration and conceptualisation phase. During several phases within the project, different groups of people are involved. Explorative sessions are conducted with the target group as well as with other 14

15 people such as fellow Industrial Design Engineering students and people from outside of the faculty. Figure 4 shows the process of this project in general. Exploration Literature survey Observational study Contextmapping study rmal caregiver al caregiver Vision Conceptualisation Ideation Explorative user testing Concept proposal Evaluative user study Evaluation Concept alterations Recommendations Figure 4. The process of this graduation project in general 15

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17 Part II: Exploration The project starts with an exploration of the target group and context. To gain general knowledge on the topic of humour and dementia, a literature study is conducted. Deeper understanding is acquired by an observational study at the day care facility for people suffering from dementia. Furthermore this observational study is aimed at developing empathy for the target group. To gain a more complete understanding of the home context, as well as the topic of humour and dementia from the perspective of the informal caregiver, a contextmapping study is conducted.

18 Humour and dementia; A literature survey The literature survey is aimed at obtaining general knowledge on the three main topics: humour, dementia and humour in the context of dementia. The goal is to generate a thorough understanding on the topic as well as identifying potential directions for further research. 2.1 Humour In various dictionaries the definition of humour is given as follows: the ability to find things funny, the way in which people see that some things are funny, or the quality of being funny (Cambridge Online Dictionaries, 2014) or: the quality of being amusing or comic, especially as expressed in literature or speech (Oxford Dictionaries, 2014). These definitions give a broad overview of all the aspects that are to it. ability suggests that it has got to do with competence, natural or acquired. the way in which people see things indicates an aspect of perception. especially as expressed in literature or speech suggests a communicative and thus social element. 18 All these aspects show that humour is a multidimensional phenomenon. It consists of a stimulus that is produced by a sender and perceived and cognitively processed by a receiver. As a result the receiver Sender Stimulus Receiver might experience amusement. However, it is not a one way process. The sender might also experience amusement from the stimulus, as well as from the response of the receiver to the stimulus. Figure 6 shows the general elements of Figure 6. The general elements of humour in interaction humour

19 2.1.1 Perceptual and cognitive aspects As described, humour has aspects of both perceiving and processing a certain stimulus to it. If the stimulus is experienced to be humorous, it can result in an experience and expression of amusement. Existing theories of what the experience of humour exactly is and why it is amusing, can be divided into three main categories: incongruity, superiority and relief theories. The theory of incongruity has been introduced by Kant (1974). It relates to the humour experience as a result from a certain disjointed pairing of ideas or situations. This incongruity can be of intrinsic nature: incompatibility of emotions (also referred to as ambivalence theory), or of a more extrinsic nature: incompatibility of perceptions (Keith-Spiegel, 1972). The theory of incongruity has later been refined, as not necessarily all experiences of incongruity lead to an experience of amusement. This refinement resulted in the incongruity-resolution theory, which can be illustrated by figure 7. Superiority theories claim that the joy resulting from humour lies in feeling superior to, or feeling a triumph over another person. This can be illustrated by the amusement people can experience over the shortcomings or gaffes of others e.g. someone with a large, malformed nose or a person slipping over a banana peel. Another example of superiority humour is shown Figure 7. Incongruity and its resolution demonstrated. The incongruity in itself (1 and 1B) does not result in the experience of amusement. However, the incongruity together with its resolution (1 and 1A) does result in the experience of amusement (Pien & Rothbart, 1976) 19

20 in figure8. Relief theories describe the experience of humour as an effect of the release of psychological tension or energy (Keith-Spiegel, 1972). An example of this is when you are being made fun of in the following situation: you wake up in the morning for a job interview and your housemate has altered the time on your watch; when you check it you think you are two hours late. You build up tension as you realise you are late, but then when you rush into the kitchen your housemates are laughing at you and Figure 8.. The humour experience resulting from seeing this picture can be described as superiority humour: the receiver feels superior over tell you it was a joke; you are perfectly the one that has made this spelling mistake. Source: ebandit.in right on time. The built-up tension is no longer needed and is released causing an experience of amusement. Not every experience of superiority, incongruity-resolution or relief will lead to the experience of humour. For example the resolution of an incongruity can be too farfetched: the connection to reality is lost or the incongruity is too complex to resolve. On the other hand it can be the case that the resolution is too obvious and therefor there is no amusement to experience in solving the incongruity. Experienced complexity is not only defined by the stimulus and a person s cognitive ability but also by a stimulus novelty. If a resolution has been found to an incongruity and then the incongruity is experienced again, the complexity is lower which might therefore not trigger the same experience of amusement (Berlyne, 1972) Social aspects As opposed to what the aforementioned theories might suggest; humour is not expressed solely for the sake of amusement. It also has several functions in the 20

21 social context affecting social interrelations and group dynamics. Main categories within these social effects of humour are: social cohesion and differentiation, (identification) and clarification and enforcement (or control). When people in a certain social group laugh about the same thing, this strengthens the group feeling and thus social cohesion. On the other hand, people who do not laugh because they do not get the joke are in a way excluded from this group, causing differentiation. Humour can also help to maintain group standards with the fool functioning as an example of rejected group values, and thus clarifying group position (Meyer, 2000). It can thus be said that humour between people can function either as a lubricant to initiate interaction or as an abrasive, causing friction (Martineau, 1979). Humour does not only influence people s social environment but also vice versa: the social environment affects what is experienced to be humorous (Ruch W., 1988). As the social environment influences people s perception of what is socially agreed upon to be normal, it also defines when these expectations are violated and therefore humour can be experienced. For example burping in public: if it is socially agreed upon to be acceptable, there is no incongruence to be experienced. However, if it is considered to be unmannered to burp in public, the same event can be experienced as being humorous. Also, whereas this stimulus can be experienced as humorous when being amongst friends, it is probably not experienced as such when being amongst your newly-met in-laws Emotional aspect Although not clearly appointed by previously described definitions there is also an emotional aspect to humour. Humour has shown to be effective in both down regulating negative emotions as well as in up regulating positive emotions (Samson & Gross, 2012). Humour is considered a very effective coping strategy: a powerful remedy for negative emotions (Vaillant, 2000). In addition, humour can serve as a method of 21

22 coping with stress and maintaining a cheerful perspective (Yip & Martin, 2006). There are several theories about the way humour supports coping with negative emotions. One theory states that processing humour requires attentional resources. By processing humour the attentional resources available for processing negative emotions are limited (Strick, Holland, Van Baaren, & Van Knippenberg, 2009). Another theory is that the positive emotions triggered by humour have the ability to undo negative emotions. The change of perspective that is made allows for distancing from the negative situation or reappraising an event from another point of view (Samson & Gross, 2012) Laughter and smiling; expressing the humour experience The experience of humour is generally expressed by laughter or smiling. Laughter and smiling are distinct but not independent. In theories laughter is mostly described as the expression of humour experience and thus as an indicator of amusement. Smiling is described as a weak laugh or the aftermath of laughter (Darwin). Laughter is more strongly related to humour than smiling is as smiling can be elicited by about any pleasurable state. Laughter can also be an expression of anxiety or triumph (Weisefeld, 1993; Berlyne, 1972). Not only humour but also laughter in itself has a smile and laugh-evoking potency (Provine, 2013). This effect is ascribed to so called mirror-neurons: when seeing and/or hearing laughter these neurons prepare the muscles in the face for the action of laughing. Activation of these muscles by the mirror neurons stimulates the brain in the same way as the experience of humour does and therefore can have a similar positive effect on a person s emotions Developmental psychology The ability of both expressing and perceiving humour is one that is developed as a child grows up. Although the first laugh of a child occurs within 2 to 12 hours after its birth, it cannot be said this laugh is an expression of humour experience. A child has to develop a certain level of cognitive, emotional and social competence in 22

23 order to experience humour. At around the age of two the child will have its first humorous experience, as it begins to recognise the difference between normal and abnormal behaviour. As the child continues to develop its social, cognitive and emotional abilities, its sense of humour will broaden. The cognitive development is important for three aspects of the (incongruity) humour experience: the child has to be aware of normal criteria, it has to understand how these criteria are violated and it has to have the confidence in the impossibility of the specific stimulus (Pien & Rothbart, 1976). The development of humour appreciation can be roughly divided in two stages. The first stage is the appreciation of an incongruity in itself, also called the nonsense. The second stage is the humour experience as a result from the incongruity, and its resolution. This transition happens between the age of 6 and 8 and is ascribed not only to cognitive changes but also to motivational changes: development of the need to resolve the incongruities (Pien & Rothbart, 1976). Following this transition, development of humour appreciation continues. The appreciation of incongruityresolution humour increases in children in their late teens while nonsense humour, containing solely the incongruity, is appreciated to a decreased extent (Ruch, McGhee, & Hehl, 1990). The general course of development of humour appreciation within children is displayed in figure 9. 0yrs 2yrs 6yrs 8yrs age late teens Figure 9. Development within children and the course of their humour apprecation 23

24 2.1.6 Different styles of humour In humour research it has been stated that one s sense of humour is as distinctive as a fingerprint. Difference in personal preference in humour can be ascribed to difference in personality, mood, social group membership, motivational conditions and the subject matter. Throughout history several attempts at categorisation of humour types have been made. Most of them end up rather broad/general and refer to the effect of the stimulus or to its function rather than to its content or structure. An example is the categorisation of Puhlik-Doris and Martin who identified four categories: social humour, self-enhancing humour, self-defeating humour and hostile humour (Martin, 2003) (Martin, Puhlik-Doris, Larsen, Gray, & Weir, 2003). A more detailed categorisation has been made by Berger on which Buijzen elaborates. Both of these categorisations build on aforementioned theories of superiority, incongruity and relief. Berger based his categorisation mainly on verbal jokes whereas Buijzen and Valkenburg analysed humorous commercials on both verbal and non-verbal aspects. They identified 41 different humour techniques from which they distilled 7 distinct humour types. This categorisation is more comprehensive as it builds on both physical and verbal types of humour. The 7 categories of Buizen and Valkenburg are as follows: 24 Slapstick: bodily/physical humour, pie-in-the-face humour e.g. clumsiness likes lipping on a banana peel, peculiar noises or faces Clownish: buffoonish, low jests or gestures or anthropomorphism. Vigorous arm and leg movements or demonstrating exaggerated irregular physical behaviour Surprise: conceptual or visual surprises, transformations or exaggerations Misunderstanding: misinterpretation of a situation Irony: irony, sarcasm or embarrassment. E.g. an expression marked by a deliberate contrast between apparent and intended meaning which can be intended to wound (sarcasm) / the use of words to convey a meaning that is

25 the opposite of its literal meaning (opposites!) Satire: Making a fool of or poking fun at well-known things such as situations or public figures (mocking or emulating something) de sport drijven met Parody: absurdity, infantilism, imitating in a ridicule way Findings within the same research support that preference for humour types as they are described above is related to age and for some types also to gender. For example: young children especially like clownish humour and surprise humour, while as they grow older they will start to appreciate satire and parody more (Buijzen & Valkenburg, 2004). Gender differences in humour appreciation are proven in different researches. In general men show to particularly appreciate slapstick, irony and satire whereas woman have a preference more towards surprise, followed by slapstick and irony (Buijzen & Valkenburg, 2004) Summary Humour can be described as a multidimensional phenomenon involving a sender, a stimulus and a receiver. The interaction between the sender and receiver can be described as being reciprocal: not only the sender but also the receiver experiences amusement triggered by the stimulus which can be enhanced by the response of the receiver. Why we experience amusement as a result of a humorous stimulus is explained by three different theories: an incongruity which we solve, the experience of superiority over others or the experience of relief of built-up psychological energy. The social aspect of humour is two sided: humour has its effect on social relationships but also the other way around as social relationships affect what is and what can be considered humorous. Humour can function as a lubricant or abrasive. 25

26 Humour has a positive effect on a person s well-being. How coping is supported by the use of humour may be explained by three different theories. The first being that processing humour requires attentional capacity of the brain and therefore processing of the negative emotions is hindered. The second that positive emotions resulting from humour undo the negative ones. The third possibility is that by the application of humour, perspective is switched and distance is taken to the negative event. Cognitive, emotional and social development are essential in children to acquire an understanding of humour. Seven distinct types of humour are identified, some of which are mainly physical: slapstick and clownish; Others are mainly verbal such as irony and satire. A few can be both physical and verbal: surprise, misunderstanding and parody. There are many aspects that are relevant in humour perception and processing. Cognitive, emotional and social abilities but also relational and contextual factors. The next paragraph will elaborate on these factors in the context of dementia. Furthermore humour can be a very powerful coping mechanism to deal with negative emotions and stress. It is therefore relevant to explore which negative emotions are involved in the context of dementia and informal caregiving which will also be elaborated on in the next paragraph 26

27 2.2 The dementia syndrome Dementia is a collective term for about fifty diseases, describing a wide range of causes and symptoms associated with cognitive decline. This cognitive decline is caused by the decrease of nerve cells and/or the connections between nerve cells and usually starts with memory loss, followed by difficulties in communication and verbalisation. In later stages bodily functions become affected as well. Most common forms of dementia are Alzheimer s disease (60-80%) and vascular dementia (20-30%), which differ in both cause and course (Alzheimer Nederland, 2014). The majority of people suffering from dementia is over 65 years old and increasing age is a known risk factor: around 5% of Alzheimer patients is aged between 40 and 50 (Alzheimer Nederland, 2014). Dementia is an incurable syndrome. However, for some cases medication or treatment is possible to slow down the process of decline Alzheimer s disease and vascular dementia Alzheimer s disease symptoms usually develop gradually but progressively. Until now the exact cause of Alzheimer s isn t entirely sure. The most plausible hypothesis is that Alzheimer s causes proteins within the brain to degenerate abnormally. This degeneration causes abnormal residue (plaque) to accumulate in the brain (Tiraboschi, Hansen, Thal, & Corey-Bloom, 2004). Language Language Because of the plaques, blood flow to the nerve cells gets affected and eventually nerve cells will die, causing loss of tissue (figure 10). Memory Memory Vascular dementia is caused by a stroke: a blockage in blood flow to a particular part of Normal Alzheimer s Figure 10. A schematic front view of a healthy brain on the left side and a brain severely affected by Alzheimer s on the right side (Nada, 2008) 27

28 Frontal lobe Executive functions, thinking, planning, organising and problem solving, emotions and behavioural control, personality Motor cortex Movement Temporal lobe Memory, understanding, language Sensory cortex Sensations Parietal lobe Perception, making, sense of the world, arithmetic, spelling Occipital lobe Vision the brain. This blockage creates a local deficiency in oxygen, resulting in definitive damage in the brain tissue. Symptoms depend on the location of the blockage (figure 11). The course of the symptoms depends on the size of the affected area and includes a sudden, stepwise or gradual change in cognitive skills (Alzheimer s Association, 2014) A cognition-oriented approach The decline of cognitive ability causes Figure 11. A schematic side view of a human brain and its general the experience of a loss of control, functions. Symptoms of vascular dementia depend on the location of the damage. Source: psychlawjournal.com autonomy and independence. People suffering from dementia speak about gradually losing skills, abilities and competences needed for normal activities or work. Secondary effects of this experience can be a decline in self-esteem and as stated before a change in their relationships with others (De Boer, 2007). Most studies on dementia focus on the cognitive perspective. For example the functional assessment staging (FAST) (table 2). Through different tests, e.g. minimental state examination (MMSE) people are categorised within one of the seven stages. FAST is based on the concept of retrogenesis, which describes the course of dementia as a retrogressive process: going through the different development stadia of a child in reverse order of acquisition. Each stage of dementia has a corresponding mental age. FAST is widely accepted and used as a base for understanding people s emotional, social and cognitive development. Although FAST is useful to get a general understanding on the effect dementia can 28

29 have on a person s emotional, social and cognitive abilities also several points of critique have to be taken into account. One of these is that people suffering from dementia do not have the same learning ability as children have at a corresponding mental age. Also, people suffering from dementia do have a cumulative life experience incomparable to that of a child of comparable mental age (Moos, 2011). Normal development (approcimate total duration: 20 years) Approximate age Approximate duration in developmen t Adolescence yrs 7yrs Acquired abilities Lost abilities Alzheimer stage Approcimate duration in AD hold a job hold a job 3 (incipient) 7 yrs Developmen tal age of patient yrs (adolescence ) Late 8-12 yrs 5 yrs handle simple 12-8 yrs (late childhood finances 4 (mild) 2 yrs childhood) 7-5 yrs Middle 5-7 yrs 2½ yrs select proper select proper (middle childhood clothing clothing 5 (moderate) 1½ yrs childhood) 6a 5 yrs Put on clothes Put on clothes (moderately unaided unaided severe) 5-2 yrs Early 4 yrs 4 yrs Shower unaided Shower unaided b 2½ yrs (early childhood 4 yrs Toilet unaided Toilet unaided c childhood) 3-4½ yrs Control urine Control urine d 2-3 yrs Control bowels Control bowels e 15 mo speak 5-6 words speak 5-6 words 7a (severe) 1 yr speak 1 word speak 1 word b Infancy 1 yr walk walk c 15 mo-birth 1½yrs 7 yrs 6-10 mo sit up sit up d (infancy) 2-4 mo smile smile e 1-3 mo hold up head hold up head f Table 2. Functional Assessment staging creates a general understanding on a person s abilities and care needs Alzheimer's degeneration (approcimate total duration: 20 years) 29

30 2.2.3 An emotion-oriented approach Recently, studies aimed at improving dementia caregiving tend to investigate dementia from the perspective of the person suffering from it, rather than from the perspective of people surrounding them (De Boer, 2007). In Dutch nursing homes emotion-oriented approaches have currently become preferred to cognitionoriented approaches such as FAST (Finnema et al., 1998). Van der Kooij offers an interesting approach that provides insight in the experience of dementia from the perspective of the patient. Through the use of a four-stage model she describes how the person suffering from dementia experiences the effects of it (van der Kooij, 2002). The first stage: het bedreigde ik (the threatened-me). In the first phase the person suffering from dementia is confronted for the first time with the loss of possibilities, usually disturbance of memory and or orientation. In this phase he or she can be in denial and adopt a disguise. He or she feels threatened and puts all his effort in not showing the things he forgets. This often brings a lot of tension for them causing them to be agitated quickly without any clear reason. The second stage is de verdwaalde ik (the lost-me). In this phase disorientation increases and the person suffering from dementia gets lost in the world and his own past. A person in this stage will lose words or will use words in an incorrect manner. They will forget their own age, where they are and who people are. Their sense of time becomes distorted. People in this phase feel lost constantly, causing them to withdraw into oneself more and more. 30 The third stage is de verborgen ik (the hidden-me). In this phase the person suffering from dementia will disappear in his own inner world. Sense of time has disappeared and contact with his or her surroundings decreases over time. Although contact with the outside world might not seem to be possible, sensory perception is often still intact.

31 The final stage is that of de verzonken ik (the recessed-me). The recessed-me has totally lost sense of him or herself and his or her surroundings. Emotions are no longer noticeable and perception of stimuli is solely sensual. Communication is no longer possible Changes in personality and mood Although cognitive impairment is the predominant feature of dementia, personality changes are also frequently reported (Jacomb & Jorm, 1998). These changes in personality may be more or less pronounced depending on the type of dementia. The change in personality can be a primary effect: the disease directly effects the areas in the brain that are a basis for personality. Especially when the frontal lobe gets affected personality and behavioural changes become apparent (Neary, Snowden, Northen, & Goulding, 1988). A person can become socially and emotionally unrestrained, meaning he or she can exhibit socially undesirable behaviour and experience and express uncontrolled emotions. The opposite is also possible, meaning a person becomes obtuse in his emotions which is especially apparent in Alzheimer s disease patients (Petry, Cummings, Hill, & Shapira, 1988). The change in personality can also be a secondary effect: the decrease in cognition affects how a person sees himself and how he sees others. His self-esteem lowers and relationships to other people change which can have a large effect on one s personality (De Boer, 2007). Furthermore it can be said that our very identity relies on an intact memory, and the ability to remember who we are and the things that we have done. Almost everything we do depends on our ability to remember the past (Groome, 2006) Informal caregiving Approximately 70% of people with dementia live at home and are taken care of by informal caregivers, who on average spend 20 hours a week on caregiving for the duration of five years. Informal care is mostly provided by spouses, but also by 31

32 other family members or acquaintances. Motivations for providing informal care differ, but most common motivation is love, affection and sense of duty. (Peeters, Werkman, & Francke, 2012) Tasks of the informal care giver Informal caregivers provide support in instrumental activities of daily living (IADL) and activities of daily living (ADL). Examples of support in IADL s are managing finances, doing groceries, giving medication and arranging services. Support in ADL s is for example: getting in and out of bed, getting dressed, getting to and from the toilet, bathing and feeding. (Ory, Yee, Tennstedt, & Schulz, 2000). In the first stages of dementia support with IADL s is much more prominent than support with ADL s. Over the course of the disease the support of the informal caregiver expands and will increasingly include ADL s. The FAST-staging as it is described in paragraph provides a general understanding on what people need help with in different stages of dementia. Overburdening of informal caregivers A recent study conducted by Alzheimer Nederland shows that over one third of informal caregivers who take care of someone suffering from Alzheimer s, experience this as being rather tough. At least one out of ten informal caregivers experience this as very hard or as overburden (Peeters, Werkman, & Francke, 2012). There are two important main differences between an informal caregiver and a health care professional when it comes to providing care for someone suffering from dementia. Firstly, a professional is experienced and educated for giving care to people suffering from dementia while an informal caregiver usually is not. For example when dealing with behavioural changes of the person suffering from dementia. Dealing with problematic behaviour can be very hard for an informal caregiver, while a professional caregiver has the benefit of his education and experience. 32

33 Another difference between a professional and an informal caregiver is that the informal caregiver is personally and emotionally connected to the patient. It is no 9 to 5 job and the person suffering from the disease is usually someone they love and they fear of losing him or her. What informal caregivers generally fear the most is to have the person suffering from dementia be included in a nursing home (Peeters, Werkman, & Francke, 2012). Amongst others, these differences cause the load of informal care giving for someone to be a burden. Another considerable burden for the informal caregiver is the change of the relationship between the informal caregiver and the person suffering from dementia. As someone becomes an informal caregiver, the relationship with the person suffering from dementia changes. There is a development from mutual into caregiver-and-patient which for many informal caregivers is one of the hardest parts of informal caregiving. Next to loss off mutuality the evolution of the relationship involves decline of reciprocity and diminishment of diversity (Lynch-Sauer, 1990) (Butcher, 2001) Summary Dementia is a collective term for diseases that cause a cognitive decline severe enough to interfere with daily life. The consequences of the disease are progressive and incurable. In most cases memory and language is affected in an early stage. Exact symptoms depend on the location of the disease in the brain but in later stages also bodily functions become affected and personality can change. The process of dementia can be considered as being the inverse of the development of a child. However, learning abilities and life experience differ. Tasks of an informal caregiver depend on the type of Dementia as well as the stage of the disease. In the beginning focus lies on instrumental activities of daily living. Later also support in non-instrumental activities of daily living is needed. 33

34 Overburdening of informal caregivers is very common. As opposed to professional caregiving, an informal caregiver is not educated and hasn t got any experience in dementia caregiving. Moreover, the person suffering from dementia and the informal caregiver are personally connected making the process of caregiving much more intensive. Also the change in relationship between the informal caregiver and person suffering from dementia is considered to increase the burden of informal caregiving. Cognitive, emotional and social abilities are of importance for humour perception and understanding. It is exactly these abilities that can be severely affected by dementia. The next paragraph will explore what research has been done on this topic, as well as on the topic of the role of humour in a relationship between an informal caregiver and a person suffering from dementia. 34

35 2.3 Humour in the context of dementia and informal caregiving As the first chapter explains how humour has got to do with cognitive, social and emotional abilities, the second chapter shows that these abilities can be severely affected by the dementia syndrome. It is relevant to further explore how this might affect humour experience and initiation. Furthermore, the course of dementia is burdensome for both the patient as well as for the people surrounding him. The informal caregiver is especially facing a difficult task when dealing both with giving care to someone suffering from dementia as well as his own emotional difficulties. It is known that humour is an effective coping strategy so it is interesting to explore how this works, or might work, in the context of dementia. Exploring exactly how humour can be beneficial in the specific context of dementia and informal caregiving is therefore relevant Humour and the decrease of cognitive ability As described in the first paragraph of this chapter, humour is very much connected to one s cognitive ability. As the cognitive ability of someone suffering from dementia decreases, it is thus possible that one s sense of humour might also change. In children it has been proven that an increase of cognitive ability is correlated with an increase of humour complexity (St. James & Tager-Flusberg, 1994). FAST as it has been introduced in paragraph 2.2.2, has proved to be a relatively accurate guideline for cognitive, social and emotional ability. It might therefore also be helpful for assessing the change in humour sense within people suffering from Dementia. However, research by Moos has found that although FAST might be accurate for most cognitive aspects, it seems to be too pessimistic when it comes to linguistic ability. An argument for that is the presence of sarcasm and irony in conversations with people suffering from dementia. These are meta-linguistic abilities, developed in late childhood. Moos concludes that this finding should even 35

36 be taken as a corrective (proof?) for the concept of retrogenesis (Moos, 2011). There are several other studies that found that demented participants did better than predicted by the FAST scale when it came to language comprehension and production (Bayles., Tomoeda, Cruz, & Mahendra, 2000). FAST staging is probably too narrow as a guideline for humour production and appreciation within people suffering from dementia. Next to that, other studies have shown that although the deficit in cognition and memory, a sense of humour is retained regardless of the severity of the process of dementia (Hendry & Douglas, 2003) Humour initiation of people suffering from dementia Although this project focusses on humour initiated by the caregiver, research by Liptak has shown that in conversations between caregiver and patient, humour is initiated significantly more by the patient. (Liptak, Tate, Flatt, Oakly, & Lingler, 2013). A possible explanation that is given is based on the theory of Saunders. This theory states that humour is more likely to be initiated by lower-levelled people in order to level (Saunders, de Medeiros, & Bartell, 2011). Another possibility might be that the person suffering from dementia becomes less aware of his own limitations over the course of the disease, while the informal caregiver is restricted by social and emotional considerations Humour expression within people suffering from dementia As described before, the experience of humour is usually expressed with laughter or smiling. In most studies on humour, laughter is used as a measure for the experience of humour. With children it has been shown that there is a positive correlation between cognitive ability and humour expression: (Zigler, Levine, & Gould, 1966). This seems to be holding for people suffering from dementia, as it is proven that humour expression decreases within the first stages and can even fully disappear within the final stage of dementia (Cuppens, 2012). However, as this study was conducted by showing the patients movies, it might be too short-sighted 36

37 to accept this statement for all occurrences of humour. Especially in this project, as the focus lies on humour in interaction between people. Other studies recognise the decrease of laughter and smiling in dementia patients, but argue that not all forms decrease equally. Takeda for example, states that the ability to laugh for social communication is readily lost with the onset of dementia, but laughter in the response to release of tension is preserved until the advanced stages of the disease (Takeda, et al., 2010) Humour in professional dementia care Most research on the effects of humour for dementia patients has been done on medical clowning. Medical clowning is usually associated with children but is also widely applied for adults, amongst others people suffering from dementia. The essence is that interaction with a clown is free of any cognitive effort. Medical clowns make use of various elements such as dance, movement and music which have been proven to be effective in calming down a patients stormy emotions. Also storytelling is an important tool for the medical clown as this can facilitate the release from correct or incorrect answers (Raviv, 2013). Although the clown itself might be associated with humour, the interaction with a medical clown does not necessarily have a humorous nature. An important difference between medical clowns and informal caregivers is that medical clowns usually have an artistic and or therapeutic background. Next to that, a medical clown generally has no personal relatedness to the person suffering from dementia. Humour therapy in dementia patients is not widely applied. A quantitative study held by Walter did not show any effect of humour therapy on the quality of life in Alzheimer s disease patients (Walter, et al., 2006). However, the findings from a qualitative study held by Stevens did suggest that humour therapy may have therapeutic benefits such as improvements in memory, learning, sociability, communication and self-esteem (Stevens, 2012). An interesting difference between these two studies is that the study of Walter involved passive exposure to humour 37

38 whereas the study of Stevens actively involved people in performing humour. This suggests that especially active involvement of people suffering from dementia can affect them positively Humour and informal care Not much research has been done on humour in the relationship between an informal caregiver and someone suffering from dementia. The current research mainly focusses on the effect of humour on the well-being of the informal caregiver. However, the positive effect humour has on well-being is found to be of greater significance within informal caregivers than within people in general (Buffum & Bord, 1998). Next to the overall benefit of improved well-being of the informal caregiver, there might be several more specific reasons for the caregiver to use humour. Research conducted on the use of humour by informal caregivers shows that one of these functions is to comfort the person suffering from dementia, reducing fear and anxiety and by doing so increasing the experience of safety. Also, humour can be used in order to connect or reconnect with the person suffering from dementia (Liptak, Tate, Flatt, Oakly, & Lingler, 2013). These functions and effects of humour are in accordance with the earlier described implications of humour on a personal and social level Possible thresholds for the application of humour There are several aspects that can hamper the informal caregiver to apply humour in interaction with the person suffering from dementia. One of these might be that the informal caregiver is overruled by present negative emotions such as fear and anxiety which have a negative influence on the appreciation and initiation of humour (Buffum & Bord, 1998). Another inhibitor of humour initiation might be the decrease of humour expression 38

39 by the person suffering from dementia (Cuppens, 2012). It might be the case that the caregiver is not motivated to initiate humour due to the (seeming) lack of response or appreciation from the person suffering from dementia. Another possibility that the informal caregiver is afraid to hurt or offend the person suffering from dementia. The latter is usually aware of his or her own limitations (especially in the beginning). Combined with the fact that many forms of humour contain a certain challenge of the cognitive ability, the informal caregiver might become more reserved in his humour initiation. Next to that they might feel that humour on the topic of dementia is offending or hurtful. A last possibility is the mismatch of humour appreciation between the person suffering from dementia and the informal caregiver. Before the dementia they were most likely adapted to each other, on the same (cognitive) level. Now the sense of humour of the person suffering from dementia might have changed causing him or her and the caregiver to no longer match: what the person suffering from dementia finds humours the caregiver might not appreciate at all or even experience as being childish Summary A decline in cognitive, social and emotional ability might affect a person s sense of humour. FAST might suggest that the process of retrogenesis will result in preference for more simple forms of humour, such as for example slapstick or clownish humour. However, other research has shown that fast staging is too pessimistic when it comes to linguistic abilities; irony and sarcasm can still be expressed and understood by people suffering from dementia. Research has been done on humour expression in the form of laughter and smiling. The conclusion was that the expression of humour experience might decrease over the course of the disease. It however is too short-sighted to state that this is the case in any occurrence of humour, as research focused on the experience of 39

40 humour from watching a humorous video by oneself. Humour is not widely applied in dementia care. Research that has been done focuses on medical clowning and humour therapy in which humour is applied passively or actively. A positive effect has been shown from humour which actively involves the person suffering from dementia. Possible tresholds that can hamper the informal caregiver in the predominance of negative emotions, the lack of motivation for humour initiation caused by the decreased humour expression of the patient or social inhibition. Another option is the lower level of humour initiation and appreciation within the person suffering from dementia. Now that iterature is explored on the topic of humoru and dementia it is important to condier what the most important insights are to continue with. 40

41 2.4 Overall insights from the literature survey Dementia effects cognition and therefore language understanding and personality. This can have an effect on humour perception as well as humour initiation: the person suffering from dementia might develop a preference towards more simple forms of humour or even nonsense humour. These changes can form an obstacle for an informal caregiver to apply humour in the interaction with the person he takes care of. Another possible obstacle is the emotional state of the informal caregiver. The burden of informal caregiving can negatively influence one s emotions to such an extent that the idea of applying humour will not come to their mind. Furthermore, the societal perspective on dementia can cause the informal caregiver to experience that humour in the context of dementia is inappropriate and therefore not apply it. It might also be the case that they do apply it but when asked about it they try to give a socially acceptable answer. Not only the person s own experience of humour has a positive effect on his emotions but also someone else s experience of humour: a smile on someone else s face can have a positive influence on one s emotions as well. The smile is understood until the latest phase of dementia. It can therefore be said that if the informal caregiver experiences humour, although the stimulus might not be understood by the person suffering from dementia the smile of the informal caregiver can still positively influence his emotions. However, the effect of the direct experience of humour, especially when the person suffering from dementia is actively involved might have a larger effect. In applying humour, an informal caregiver is actually shifting perspectives. Next to the positive emotions that directly result from the experience of humour, it is also this new perspective itself that can bring enlightment for the informal caregiver. 41

42 42 Further research should provide better insight in humour initiation as well as perception, of both the people suffering from dementia as well as informal and professional caregiver. It should be analysed how humour is applied in the professional context as well as in the home context. Further research should also provide insight in how the proposed thresholds relate to the real context. This will help in identifying promising design directions.

43 Humour in professinal dementia care; an observational study In order to explore how findings from the literature survey relate to the target group, an observational study was carried out. Relevant was to investigate if and how the cognitivesocial- and emotional decline is present in the occurrences of humour as well as how this is possibly dealt with by professionals. Additionally, the aim was to explore the role of humour in a setting of professional dementia care. The application of humour between both caregiver and patient, as well as between the people suffering from dementia were studied. The observations have provided key insight for further research and future design. The approach of this observational study was to first collect humour occurrences. These occurrences were described as detailed as possible during the observation itself and later on supplemented when necessary. Different forms and functions of humour were identified, as well as details on the interaction e.g. who is the sender or initiator and who is the receiver and what is the reaction. Later on the data was analysed in order to gain insights in aforementioned topics. Next to observations, health care professionals were questioned. They mostly focussed on clarification of the observations and the reasoning of the professional behind certain actions. 3.1 Approach 43

44 The participants in this study were people within the first two stages of dementia who visit one of the day care facilities of De Wever: Dennenheuvel or Matisse. The aim of offering a day care facility is to unburden the informal caregiver and taking pressure of the care giving situation by facilitating a day program for the people suffering from dementia. All people visiting these day care facilities live at home and are taken care of by informal caregivers. The day care facility is visited 1 to 4 times a week, depending on the needs of the patient and his environment. At the day of the observation at Dennenheuvel, 15 visitors were present, of which the majority was female. All of the visitors suffered from mild to moderate dementia. 2 health care professionals (HCPs) were present, male and female. Both of these HCPs have over 20 years of experience in nursing homes for people suffering from dementia (table 3). At the day of the observation at Matisse, 15 visitors were present, of which the majority female. All of the visitors suffered from mild to moderate dementia. 3 HCPs were present, all of them female. Two of them have over 20 years of experience in caregiving of people suffering from dementia and one of them is a younger employee who has been working at the day care facility as assistant activity facilitator for a few years (table 2). At both day care facilities the program of the day has a set structure, involving daily activities such as reading the newspaper, drinking coffee and having lunch. Variables Patients % of patients female Professionals % of professionals female Specific facilities Dennenheuvel 15 66% 2 50% basic Matisse 15 66% 3 100% additional care Table 2. An overview of basic sample variables of the observational studie at day care facilities matisse and Dennenheuvel 44

45 Additional activities such as physical exercises, games and creative activities are organized throughout the day. The main difference between Matisse and Dennenheuvel is that at Matisse people usually require extra support, care or therapy. As Matisse is located within the elderly care centre of De Hazelaar, people are placed within this group for practical reasons. At each of the day care facilities a full day of observations was performed. Possible occurrences of humour were noted down, including as many details as possible. In all cases the initiator, the stimulus variables, the respondent and his response and a possible intended goal or function from the perspective of the initiator were recorded. The records were labelled with the most similar type of humour. Each example of a humorous occasion was then further analysed. 3.2 Method 3.3 Results and interpretations All detailed records of humour occurrences collected during the observations are shown in Appedix IV. In this section several examples and quotations will be use as illustration. These quotations are in orange Humour and the decrease of cognitive, social and emotional ability On beforehand it was expected to find a dominant prevalence of more simple forms of humour, due to the decrease of cognitive ability in people suffering from dementia. Expectations were that the tendency could be more towards clownish and slapstick humour, rather than to more complex forms of humour such as parody and satire. However, all different forms of humour seemed to be initiated and appreciated throughout the group of both patients and HCPs. 45

46 Patients, however do initiate nonsense humour to an extent that seems to be above average. This nonsense humour does only seem to trigger an experience of amusement in the initiator himself and occasionally in another patient. Nonsense humour is not encouraged by HCPs and in some cases it is even corrected by them. HCPs state that the reason for this is that they might continue in this nonsensebehaviour which is not appreciated by other people. When reading through the newspaper there is an article by Dr. Joris. When the HCP tells something about this article Mrs. J brings up a nonsense rhyme: Dr. Joris, Dr. Joris, krijgt de poris. Mrs. J smiles and looks amused, but no one else shows any sign of response to her rhyme. Several visitors do have a tendency towards initiating slapstick or clownish humour. These are always male visitors. These visitors do however also laugh at other forms of humour such as sarcasm, indicating that they also enjoy and understand these more complex forms of humour. Mr. G is asked to close the door while the group is waiting to start a game. He gets up and does some sort of silly walk in front of the group. Later on during stone carving his hands are covered in dust. He walks up to Mrs. C and holds up his hand to imply he wants to shake her hands. Mrs. C looks at him questioningly but shakes his hand. When Mr. G starts to laugh she looks at her hand and also laughs What did become apparent in some people was the social and emotional disinhibition that comes with certain types of dementia, especially with frontotemporal dementia. Some of these people tend to use humour constantly. This causes others, both other patients as well as the HCPs to no longer respond to one s attempt of humour. Other consequences are that they might initiate jokes in inappropriate situations or about inappropriate topics. During the afternoon walk Mr. G sees a few Arabic looking people standing 46

47 around a van and having a chat. He then states, very loudly: well there you have another bunch of lazy Moroccans and he laughs. For Mr. G this might be just an attempt of humour, but to the subjects of this joke it might be quite offending Humour initiation by health care professionals According to HCPs of the day care program humour plays an important role in the day care. They acknowledge that the diagnosis of dementia is a very tough one and the burden of that diagnoses is most present in the earliest stages. Humour is often used to support the visitors in coping with the burden of this diagnosis and of the disease itself. Next to that, visiting a day care facility often is quite a step for people suffering from dementia and their informal care giver. Humour often contributes in taking off the sharp edges and making people feel comfortable at the day care facility. These insights from professional caregivers themselves show that humour is applied consciously for the sake of comforting the people suffering from dementia. The use of humour to comfort the people suffering from dementia becomes apparent from the observations as well. Mrs. C needs support in going to the bathroom but she doesn t feel comfortable with that: Oh no, I don t need support; I am perfectly capable of doing this myself. The HCP takes the pressure off of the situation and comforts Mrs. C by joking: Don t worry, I m not going to touch anything The observations also show that humour is applied as a tool to involve people in a specific activity. Some of the visitors have a tendency of zooming out when something requires too much physical or mental effort. They become quite passive and no longer actively participate in the current activity. Humour is then used by the HCP to get them involved again. When setting up the table HCP Jan throws a tablecloth at a lady who is perfectly able to help setting the table but not initiating this herself. The 47

48 laughs and then gets up to help. Another function of humour that becomes apparent at the day care facility is to stimulate people into making some cognitive or physical effort such as answering a hard question or joining the afternoon walk. Mr. does not want to join the walk. The HCP acts overly disappointed and says Oh no, are you serious!? I ve been looking forward to walk with you all morning and now you tell me you are not coming and then the visitor laughs and responds: oh no, are you serious? Oh well, then I might as well join. Not all initiations of humour are directly or clearly connected to coping or stimulating certain behaviour. Many occasions of humour seem to be merely a form of entertainment. Especially during the physical exercises, the creative activities and the games many attempts of humour are made. During physical practice the group is playing a game which involves throwing some plastic rings. The HCP tries to trick someone: she looks to the left, very concentrated like she is aiming for the pole the ring has to land on. Then she suddenly throws the ring to the other side. The group laughs Functions of humour for the people suffering from dementia Humour as initiated by the patient seems to cover several different functions. One of these functions is as expected; to cope with the difficulties they experience due to dementia. Mrs. C forgot to change her slippers for her shoes when she left for day care. At first she seems to be a little bit ashamed as people ask about it but then she turns it into a joke by actively telling people she forgot her shoes. She then puts her hands up saying I can t help it either and then she laughs. Another thing that becomes quite apparent is that people suffering from dementia can try to use humour as a cover. They can try to hide their flaws, or try to avoid confrontation with the consequences of the disease. This seems to be especially 48

49 apparent in people who have a relatively low self-esteem. During a quiz game it is the turn of Mrs. J to answer a question. She does not seem to make an attempt at answering the question and instead she says: I m born stupid and that will never change and then laughs. Interesting to see is that Mrs J. often imposing this self-defeating humour other visitors also seem to make her the subject of jokes more often which might affect her self-esteem even more. Mrs. C tells about her dad who was a notary. The HCP adds: yes, he was highly intelligent. Mrs. J: yes in our family they were also highly intelligent Mrs. C: yes, except for you isn t it? It seems to be the case that patients initiate more humour towards HCP s than they do towards each other. A possible explanation for this is that the patients look up to the HCP s and that they are using humour to connect with the HCP. This is confirmed by an HCP, who states that he experienced that the people at the day care facility look up to them. The people suffering from dementia seem to impose humour as entertainment as well. They do so both towards each other as well as towards the HCPs. Humour as entertainment shows to be especially present during physical activities such as ball or ring games Topics for humour As opposed to the humour of the HCPs, the humour as initiated by the visitors seems to have a dominant subject. This dominant subject differs between Dennenheuvel and Matisse. Although at both locations humour concerning dementia was present, at Dennenheuvel this seems to be more prevailing than at Matisse. At both locations many visitors had a certain degree of self-mockery which was most of the time related to the dementia. Furthermore, quite some visitors mock other visitors. A few of them (e.g. Mrs. J) where the subject of jokes more 49

50 than other people, both about themselves as about others. At Matisse, a dominant subject is anecdotes. The subject of anecdotes is brought up during almost any conversation. As it is very common within people suffering from dementia, several anecdotes are brought up more than once. Especially the patients seem to enjoy bringing up situations from the past. At first these can be entertaining for both patient as HCP. However, when the anecdote is repeated, the novelty decreases and the experienced humour can decrease, especially for the HCP. HCPs often attempt to interrupt the circle of bringing up anecdotes by changing the subject of the conversation or introducing another activity Styles of humour The types of the humour initiated by HCPs are varied and connected to the intended goal. Humour is present in both verbal as physical forms, but the majority of occasions involves verbal humour. The dominant form of humour is connected to the activity. Physical activities such as gymnastics, setting the table or sculpting, lead to a more physical form of humour. For example during sculpting, an HCP makes a joke about throwing a stone to someone s head. Especially during physical activities slapstick and surprise are very often used. During more conversational activities physical humour is almost absent. In those cases more complex forms of humour such as satire and parody are used. When HCPs use more complex humour they tend to exaggerate. A reason for this might be to make the humorous event more obvious and thus easier to notice for the auditor; with this exaggeration he can make sure that people are aware of the fact that he is just kidding and at the same time reach people of different cognitive levels. For the HCPs as well as for the patients the type of humour is strongly connected 50

51 to the activity. A more physical activity such as gymnastics invites for more physical humour. Conversational activities involve more verbal and complex forms of humour such as satire and parody. These findings support the criticism on the FAST staging as a guidance for humour in people suffering from dementia. As stated before, the visitors very often use existing and non-existing rhymes and songs: for example when the name Jo is called and someone responds with Jo with the Banjo or when someone is asked to close the door and says die deur dikke deur. It however is not clear if this is an attempt of humour or something more or less random. The initiator often laughs about it, but usually there is no response, especially none from the HCP The experience of safety As expected, the physical and social environment have a strong effect on humour initiation and experience. In order to initiate and/or experience humour it is important that both the auditor and the initiator experience a certain degree of safety. Especially at Denneheuvel it is quite apparent that most of the visitors feel at ease. The HCP greets all of them personally, takes their coats and offers them a cup of coffee. When at the coffee table, most of them start a friendly conversation with the other visitors, confirming that they know (and recognise) each other. At Matisse most people seem to feel rather comfortable and safe as well. The welcoming routine is somewhat the same as at Dennenheuvel, starting off with a cup of coffee and some small talk with the other visitors. The majority of people seems to be at ease at the day care. However, for one of the visitors not one humour initiation nor an expression of humour experience was observed. For this specific visitor it was his first day at Matisse. It can be said that his emotional state was far from relaxed and that he might have even felt some fear and confusion. Although the HCP tried to put him 51

52 at ease, he clearly kept feeling rather unsafe. The HCP did not apply humour in this specific case, possibly because she felt it was not appropriate and/or might have had the opposite effect: the new visitor might not have felt to be taken seriously. The HCPs point out that an important aspect of the visitor s experience of safety and security is to never overload them with stimuli of any kind. This is especially important in activities that require cognitive or physical effort. Pressurizing them will cause fear or even panic, causing them to no longer feel safe. How you apply humour and to what extend is a delicate act of anticipating the person and situation you are dealing with. 3.4 Most important insights Function and application of humour in the professional context HCPs mainly apply humour to support the people suffering from dementia in a variety of situations. Another function of humour that is very apparent, is to make a person do something. It shows to be a powerful tool to avoid discussion. Informal caregivers might not be capable of doing this, or they might not be aware of these applications and possibilities of humour. The following applications of humour can form an inspiration for future design directions in the context of informal caregiving:w 1. Obedience to support people suffering from dementia might need some help with everyday tasks they used to be able to fulfil by themselves. It can be quite tough for them to accept this help which might lead to some discussion. To stay out of this discussion humour might be applied to ease the patient and to take the pressure off of the situation 2. Popping the bubble quite some people suffering from dementia have a tendency to zoom out when a situation requires too much physical or cognitive effort. An initiation of humour might help to get them involved again. This might be especially interesting in cases in which the person suffering from dementia is quite passive. 52

53 3. Stimulating physical or cognitive effort stimulating the patient to deliver physical or cognitive effort can be an important task or goal of the informal caregiver. This however often requires quite some persistence and can also lead to a discussion. Humour can be used to stimulate the patient into making this effort without them feeling forced and without causing a discussion. 4. Soothing a confrontational situation there are quite some occasions of confrontational situations which can be tough for both patient and informal caregiver. For example when the patient can no longer find his way to the toilet, or shows up at day care wearing his slippers instead of his normal shoes. In this case humour can be initiated in order to ease the patient (figure 12). 5. Solely for the sake of entertainment both the caregiver as well as the patients amongst themselves use humour to solely for the sake of entertainment. Especially during more relaxed physical, creative and game activities. It sets a relaxed and amusing atmosphere. professional caregiver person suffering from dementia potentially negative event or situation punchline FIgure 12. Two different possiibilities in which the professional caregiver users humour for the sake of coping. Soothing a confrontational situation (for the patient) or conciously using humour to work around a negative situation Possible obstacles for the informal caregiver As opposed to what was expected, humour is very present between the professional caregiver and the people suffering from dementia. There do not seem to be obstacles which discourage the application of humour for the HCP nor for the patient. However, this might be different in the home situation. It is therefore 53

54 relevant to identify possible obstacles that might not be present in the day care center, but might be relevant in the home situation. These obstacles are relevant for future research involving informal caregivers. The informal caregiver s emotional state is more subjective to the patient s behaviour and emotional state than that of a professional caregiver. This has to do with the difference in personal distance as well as the amount of time they spend together. An example given by the HCP is when a patient complains that his glasses have been taken away from him; the first time the informal caregiver can respond to this with a joke e.g. that the patient sure knows how to hide things well. However, if this happens every hour for a whole day or if the caregivers feels personally attacked by this accusation he or she is very likely to become frustrated by this at some point and therefore can no longer deal with this by applying humour. It is pointed out by the HCP that at home, behavioural problems are usually more present then they are at the day care facility. These behavioural problems can create a very negative atmosphere at home and cause tension between the informal caregiver and the patient. Usually the patients esteem for the HCP is significantly higher than for the informal caregiver, which makes it harder for them to control behavioural issues. In the observational study no proof has been found for the decreased humour expression by the patient being an obstacle for humour initiation from the caregiver. However, as this research focussed on group interaction, it is likely that there is always someone responding, which makes it easy to miss if one person in the group does not respond to humour. It might thus be the case that this study is not representative for a one-on-one interaction such as between the informal caregiver and the patient at home. The decrease in cognitive ability did show in presence of simpler, exaggerated forms 54

55 of humour, as well as initiation of nonsense humour by patients. HCPs are able to adapt to this while informal caregivers might not be willing or able to do so. It is not unthinkable that this nonsense humour might be experienced as childish by the informal caregiver and therefore forming an obstacle. However, more complex forms of humour such as sarcasm and irony are also present Other relevant insights Physical activities seem to stimulate humour initiation from both HCP as from the people suffering from dementia. This might possibly be an interesting direction for increasing humour between the informal caregiver and person suffering from dementia One occurrence of humour can have a snowball effect and trigger other people to initiate humour. This effect can be useful when aiming at humour stimulation. However, for some people suffering from dementia this snowball is hard to stop: they keep being triggered to initiate jokes. Humour can be applied to make someone feel safe and at ease, but it also works the other way around; if someone feels safe and at ease he or she is more likely to initiate humour. Humour can also have a negative or undesirable effect as some people suffering from dementia might use it as a disguise, which might cause difficulties they are struggling with to go unnoticed. Also, especially self-defeating humour can trigger others to make someone the subject of joking. This might harm their self-esteem. On the next page figure 13 provides an overview of the key insights of this observational study. W 55

56 Insights on function To help cope with difficulties To stimulate physical or cognitive effort As a disguise; hiding flaws or avoid cogntive challenge can be harmfull To level To avoid discussion To entertain To entertain professional caregiver Insights on form person suffering from dementia can taylor the stimulus by - extra exaggeration - adding gestures - repeat or extra explanation sometimes initiates nonsense humour: incongruity which misses it s resolution most of the time no one responds Most prevalent form of humour is dependent on the activity verbal activity = more verbal humour physical activity = more physical humour Other insights FIgure 13. An overview of key insights from the observational study 56 snowball effect: one initiation of humour triggers more initiations of humour avalanche effect: some people continue endlessly

57 The observational research provides insight in the role of humour in the setting of a day care facility. The perspective of the professionals as well as the perspective of the person suffering from dementia is explored. It is important to further examine how these possibilities and limitations are related to the context of an informal care relationship between caregiver and patient. Further research is needed to gain insight from the perspective of the informal caregiver himself and therefore a contextmapping study isconducted. 57

58 Humour and dementia in the home context; a contextmapping study In order to determine a more specific focus for the project, the topic is addressed from the perspective of the informal caregiver. In order to create a product that fits within their personal context, it is important to identify what the needs and wishes of the target group are. This is done by conducting a contextmapping research. Contextmapping is a qualitative research method that is especially useful to access the deeper layers of the target group s knowledge: what they think, what they feel and what they dream of (figure 14). By the use of generative techniques in the form of make tools, participants are stimulated to creatively express themselves (Stappers & Sanders, 2003). As the higher goal of this project is to support and stimulate humour for the sake of coping, it is also important to explore the broader context of dementia and informal caregiving: in which specific struggles can humour be beneficial for the informal caregiver and/or for the patient. This study has provided detailed insights into the daily routine of the informal caregiver and shows possibly interesting points of intervention type humour. During informal conversations held with the target group for orientation purposes it became clear that the topic of humour is rather hard to relate to for the informal caregiver. As described before, some of them even said that they had nothing left to laugh about. However, it was expected that this response was more likely to be a lack of sensitivity with regard to the topic, than an actual lack of experience in humour. 58

59 what people techniques knowledge surface say think interviews explicit do use observations observable deep want feel dreem generative sessions implicit latent Figure 13. Accessing different levels of knowledge requires different techniques (Sleeswijk-Visser, Stappers, Van der Lugt, & Sanders, 2007) By providing the target group with a more subtle and creative approach such as contextmapping it was expected that it would be easier for the target group to relate to their experiences and emotions. The aim of this study was to picture the context in which the future design will be used, as well as to identify possible directions for design. This was done by including the target group intensively throughout three different stages: sensitizing, collage making and discussion. The central theme for this study is humour and dementia in the home context. To map out this theme extensively there are several subthemes. The first theme is the sense and experience of humour of the informal caregiver himself: How do they view and experience humour and what role does it currently play in their daily lives? The second theme is the sense of humour from the person suffering from dementia 4.1 Approach 59

60 from the perspective of the informal caregiver: How does the informal caregiver experience the sense of humour from the person suffering from dementia, and has this possibly changed with the course of the disease? Do they notice a negative effect of the decline in cognitive- social- and or emotional ability. and if so, what might be the effect of this? The third theme is the humour between the informal caregiver and the person suffering from dementia: When does humour take place, how does it take place and how is this experienced? Does the informal caregiver experience any obstacles and if so, which and how? The fourth theme is humour as coping mechanism: Does the informal caregiver apply humour for the sake of coping and how aware is he or she of this? Also, in which specific difficult or negative situations is humour experienced to be beneficial? There may also be situations in which the informal caregiver would like to apply humour but does not do so. The fifth and last theme is focussed on the more general context of informal caregiving and dementia: What do their daily lives look like, what are their struggles and where can humour possibly provide support? 4.2 Participants and context According to Sleeswijk-Visser et al., the ideal number of participants is 4 to 6. A minimum of 4 is important to reveal enough variation in stories to allow participants to reflect on each other. However, it should also be possible to pay attention to the individual stories (Sleeswijk-Visser, Stappers, Van der Lugt, & Sanders, 2007). 60 The participants that were included in this contextmapping study are informal caregivers of people suffering from dementia. The stage of dementia in which they are scaled is stage on or two out of three: mild to moderate dementia.

61 gepresenteerd als een metaforische kaart, de map, waarop richtingen, mogelijkheden, maar ook gevaren worden weergegeven. Recruitment of participants was done at a mantelzorgmiddag (informal caregiver meeting) organised at de Hazelaar. Visitors of this meeting are informal caregivers Ontwikkelaars en ontwerpers of clients of the Matisse day care facility. kunnen deze kaart gebruiken The group of om participants een weg consists te of vinden four female door spousal het caregivers of the age of 70. Although it was tried to form a group of participants that was diverse in ontwikkelproces. Om deze kaart both age as sex and relationship to the person suffering from dementia, the final group of participants vorm te was geven slightly worden skewed due een to the aantal lack of responses and two cancellations. stappen gevolgd, bestaande uit voorbereiding en planning, sensitizing, generatieve sessie(s), According to Sleeswijk-Visser et al., a contextmapping study in general consists of several basic steps which analyse are depicted en communicatie. in figure 14 (Sleeswijk-Visser, Stappers, Van der Lugt, & Sanders, 2007). geselecteerd, en wordt een keuze g Generatieve technieken zijn minder onderzoekstechnieken, maar vergen succesvolle toepassing hangt af van exploratiegebieden. De volgende stap is het opwarmen de term sensitizing, als voorbereidi traject van één week of meer worde herinneringen bovengehaald. Sensit ervaringen om deze in een groepss Tijdens de 4.3 sessie Method komen de particip opdrachten waarin ze artefacten cre componenten. Door de artefacten t gemakke ideeën ui De kwalit rijk en ge anekdote de deelne leefwerel en anekd aan de ha kan word worden. van de w preparing sensitizing make & say discussing analyzing capture & share conceptualizing collecting user insights session share with and communicate to the design team Figure 14. General steps in a contextmapping study (Sleeswijk-Visser, Stappers, Van der Lugt, & Sanders, 2007) The part involving participants is divided in three stages: sensitizing, make & say and discussion. Stage 1 - sensitizing The aim of the sensitizing stage was to stimulate the participant to reflect on their geïnspire ontdekke 61

62 own experience and by doing so making them more sensitive to the subject of humour. Sensitizing participants on beforehand positively contributes to the quality and quantity of their input in the next two stages (Sleeswijk-Visser, Stappers, Van der Lugt, & Sanders, 2007). Participants were given a sensitizing booklet which they were asked to fill in over the duration of 5 days. For each day there was another small assignment related to one of the themes as described in the aim of this study. The design of the booklet is informal but professional as it should be stimulating to draw and write in the booklet but also to give the participant the experience of being taken seriously (Sleeswijk-Visser, Stappers, Van der Lugt, & Sanders, 2007). Filling in the booklet was done at home and in their own time. Different tools were provided for filling in the booklet: word stickers, red and green coloured dot stickers and different colours of pencils. The complete booklet and the word stickers can be found in appendix B The first pages of the booklet are dedicated to creating a sense of ownership within the participant. He is asked to introduce himself, as well as the one he takes care of. There is place to provide a picture or drawing as well as some questions that ask what they like to do together. The second day they were asked to map out a day in their lives. Coloured stickers were provided and the participant was asked to indicate the positive and negative moments of the day. The third day there were questions related to the sense of humour of the informal caregiver. They were asked to write something about someone who makes them laugh, but also about a recent situation that made them laugh. The fourth day was about humour as a coping style. The participants were asked to reflect on situations in which they had applied humour to comfort themselves or others and about how the person they take care of can make them laugh. 62

63 On the last day they were asked to give a small reflection on what the meaning of laughing is to them. An impression of the booklet is given in figures 15, 16 and 17. Dag 1 En wie bent u? En samen doen wij graag,,, Hier kunt u iets over uzelf vertellen. U kunt uzelf tekenen, of een leuke foto inplakken. Wat doet u graag, waar wordt u nou echt blij van? Ik hou van: Maar niet zo van: Ik heet:... Figure 15. An impression of the first day of the sensitizing booklet Ik moet vaak om hem/haar lachen omdat:... Bijvoorbeeld: mijn zus, omdat ze heel droge humor heeft en die vaak op het perfecte moment inzet Deze bekende of onbekende persoon maakt mij aan het lachen Om dit tv-programma moet ik vaak hard lachen Wat er zo grappig aan is: Bijvoorbeeld: t Schaep met de vijf poten; omdat ik het Amsterdamse accent erg grappig vind... Figure 16. An impression of the third day s tasks in the sensitizing booklet 63

64 Voorbeeld Voorbeeld Dag 2 Een dag uit mijn leven Bij deze opdracht is het de bedoeling dat u laat zien hoe een dag uit uw leven als mantelzorger eruit ziet. Ook voor de dingen die niets met zorgen voor uw naaste te maken hebben mogen een plekje krijgen op deze tijdlijn. U kunt hierbij de rode en groene stickertjes gebruiken om aan te geven wat u leuke momenten vindt, en wat u minder leuke momenten vindt Figure 17. An overview of the second day in the sensitizing booklet Stage 2 - Make & Say In the make and say stage the participants joined in in a group session. One of the advantages of a group session as opposed to individual or pair sessions is that participants can react to each other s experiences. Furthermore, a group session makes it possible to elicit a large quantity of diverse information in a limited amount of time (Sleeswijk-Visser, Stappers, Van der Lugt, & Sanders, 2007). During the make and say part the participants were asked to introduce themselves and also shortly reflect on the sensitizing booklet. They were asked to share the humorous situation they described in the booklet. For the make-part of this stage each of the participants made an individual collage around the theme: The role of humour in their daily lives. As the booklet already covers the first four themes, this part was also aimed at gaining insight in the fifth theme: The life of the informal caregiver in general. For the collage making, the participants were provided with a pre-selected, limited amount of words and images. 56 images were used, following the research of Sleeswijk-Visser et al. They proved this amount to be just as informative as using 64

65 more pictures (Sleeswijk-Visser, Stappers, Van der Lugt, & Sanders, 2007). The choice of pictures was mainly based on findings in previous research as well as on the theme of the make-part. There are pictures included about daily activities such as showering and eating. There are also pictures provided that are thought to be useful for sharing emotions. These are ambiguous ones such as happy and sad faces, but also less ambiguous ones such as a rainbow, a maze and broken metal banisters. Another part of the pictures is focussed on health and sickness such as an ambulance and a hospital bed as this is expected to play an important role in the lives of the informal caregivers. The style of the pictures is varied; some of them are photos, some are drawings. Some are clearly staged and some are more random. They also vary in their warmth of colour as well as in their shape; some are cut off and for others show objects in their entirety. An impression of the pictures used during the session is shown in figure 18. The complete set of pictures is can be found in appendix C. Figure 18. A few of the pictures that were provided to the participants for the collaging activity 65

66 Stage 3 -Discussion In the discussion phase the participants reflected on their own and on each other s stories. Some interesting elements that elicited from the make and say stage were highlighted and put up for discussion. The aim was to first discuss about the general part of what they created and later on direct the discussion back towards humour and its role in their daily lives. 4.4 Results and interpretations For analysis, the contextmapping session is fully transcribed from the video recordings. The full transcription can be found in appendix D. From these transcriptions, interesting quotes were highlighted and interpreted. These quotes together, with the interpretation are then clustered to reveal possible themes and connections. The identified clusters and themes are shown in figure 19 and will be further explained in the upcoming section Emotions of the informal caregiver Fear of the nursing home Informal caregivers who take care of someone suffering from dementia, experience they have a personal responsibility to keep the patient at home as long as possible. The nursing home proves to be one of the biggest fears. There are several aspects to this fear, of which one is the negativistic image that people have of the nursing home. They believe that their spouse will not receive the same quality of care. However, committal to a nursing home is something that can rarely be prevented. 66 [her husband went to the garden and tripped] Yes, first I was angry with him. We agreed upon the rule of not entering the garden without me and I said: you are lucky that I am still healthy enough to take care of you; otherwise you have to go to the nursing home!! I m just so afraid that one time he will hurt himself so badly that he can no longer stay at home; and then he ll be just sitting here at De Wever All day

67 fear the nursing home communication constand adaptation take away responsabilities professionals sharing a smile coping social life entertainment television and puzzles day care facility Figure 19. The clusters and themes as they are identified from the contextmapping session. 67

68 Moreover, when the day care facility proposes to have the person suffering from dementia visit an extra day, this is often experienced as failure of the perspective of the informal caregiver. An informal caregiver, and especially a spousal caregiver, slowly but surely devotes his or her life to caregiving. It is very likely that the fear of being alone and losing someone to care for (losing the goal in their lives) also contributes to this. Although it is nice that he can go to day care, I m always happy to see him when he gets home. I usually already have prepared dinner for the two of us The experience of taking away responsibilities ( de boeman zijn ) As dementia is an ongoing process of declining mental and physical skills, the person suffering from dementia often has to give in and take a step back. This is often referred to as inleveren (being forced to sacrifice or compromise). Informal caregivers are almost constantly being torn between taking over certain things or not. The experience of taking over something or prohibiting them from doing something feels like they are taking away something from the person suffering from dementia, while at the same time they want to protect them from disappointment and possible harm. I wanted to sell his bicycle because he cannot use it anymore but You know..should I take everything away from him? Isn t he allowed to do anything anymore? This taking away is a hard thing to do for the informal caregiver as they would want the one they take care of to be as happy and also independent as possible. This especially becomes apparent in situations that involve hobbies such as gardening, biking and privacy sensitive activities such as toileting and bathing. [when talking about letting the person suffering from dementia go to the toilet by him/herself] I think that s dangerous; I find that a little eigen-ik 68

69 (own-me), for my husband, you know. I find it really hard, painful to take that away from him Struggles of the informal caregiver Constant adaptation to change As it is an ongoing process, both patient and informal caregiver have to frequently adapt to new situations dealing with dementia. They constantly have to find new ways around the limitations that are brought by the disease. This constant change and adaptation requires a lot of energy. Informal caregivers often need help in finding new ways to keep the person suffering from dementia living at home. Yeah well so, you know we taught him a route to walk, just around the block but he could do that. We were so happy that it worked out but then one month later he got lost again and we had to think of something new again.. That s just how it goes Communication difficulties When cognitive functioning decreases, the communication skills of someone suffering from dementia also decreases. This can be very hard for the informal caregiver, as at some point the person suffering from dementia is no longer capable of telling what he or she feels, thinks and needs. This can make an informal caregiver feel insecure or even desperate when in a tense situation they cannot communicate with each other effectively. Multiple strategies are adopted by the informal caregiver to support communication, sometimes brought forward by a professional, however, informal caregivers also are quite inventive themselves. Communication strategies involve adaptation of verbal communication such as slowing down, shorter sentences and using words that are easier to understand. Informal caregivers also adapt to a more visual way of communication, using more and possibly larger gestures but also involve objects in their communication. For example when they ask if the person suffering from dementia wants a cup of coffee but they do not get a clear response, they point to the coffee machine or pick up 69

70 a cup and take an imaginative sip. Next to that, informal caregivers tend to avoid questioning syntaxes and tend to communicate in a more narrative manner Activities Activation an entertainment When the person suffering from dementia is not at the day care facility, he or she often has to be stimulated to do activities. It is hard for them to keep themselves entertained and they become quite passive if not offered anything to do. Most of them hardly take their own initiative and if they do it is quite often something that could dangerous, such as cycling, going for a walk or even driving a car. Most of the informal caregivers are therefore limited in their own activities when the person suffering from dementia is at home. You cannot just leave them alone because then they go and do stuff. If I m in the house and he is watching TV you have to activate him to do stuff but as soon he is alone He starts trying out stuff. [ ] It s as if they are small children As the informal caregiver also has to do household activities, the television is an often used as a sop. Other things that their spouses do are simple puzzles such as woordzoekers (word seek puzzles). During these activities the care giver can do some things by himself. When they spend time together they go for a walk or watch television. When watching television, the informal caregiver sometimes helps to explain what is happening on the television or tells a story around what is happening on the television. They specifically choose Dutch- spoken television shows that are not too hard to understand. Humorous television shows such as bananasplit and animal crackers are popular. According to the informal caregivers, the best entertainment for both of them is to 70

71 have their children and grandchildren around. Watching them play and interacting with them is a great source of pride and also of humour. A visit from children and grandchildren can help them to cheer up in hard times. The joy of their visit usually stays for a while after they leave. Especially their younger grandchildren do not seem to feel restricted in their communication towards their grandpa or grandma suffering from dementia. Day care facility (dagbehandeling) Going to a day care facility is usually quite a big step for both the informal caregiver as for the person suffering from dementia. The person suffering from dementia often feels like he or she is not yet that far gone.going to a day care facility is usually quite a big step for both the informal caregiver as for the person suffering from dementia. The person suffering from dementia often feels like he or she is not yet that far gone. However, when they get used to it it is usually very beneficial for both of them. The person suffering from dementia gets to know the people at day care and usually enjoys his time there. The informal caregiver can find some time for household chores and also some time for their personal lives. First it was hard to see him go, get in the van. But they do nice avtivities at the day care facility that I can t do at home, like painting and sculpting. And I do groceries, you know, household stuff Social aspects When diagnosed with dementia, the social life of both the informal caregiver as the person suffering from dementia changes drastically. As the care giving process will take up more and more time, the informal caregiver will have less time to spend by himself. Their personal life shrinks and quite often several social connections fade away. Informal caregivers often experience a lack of understanding from outsiders. Even though people might have a basic understanding of dementia, often people have no idea about how to communicate with someone suffering from dementia, causing 71

72 them to avoid communication with the person suffering from dementia all together. This exclusion from conversations can be very injurious, both for the informal caregiver as for the person suffering from dementia. A secondary effect of this is that parties and other gatherings might be avoided, causing their social circle to shrink even more. I already told the family that they had to talk to Herman as well [ ] they can just say that the weather is nice or what they did today, just things that he doesn t have to answer to, no questions. Yes, it still makes me so mad They can talk to toddlers who cannot yet talk but to Herman The social circle of an informal caregiver gradually evolves from a large circle with many social connections, towards a smaller circle with less connections. However, the few connections that remain usually become stronger. These connections are mainly neighbours but also other people affected by dementia who they know through mantelzorg meetings (informal caregiver meetings). Professionals Informal caregivers usually get supported by professionals. These professional vary from the people at the day care to ergo- and physiotherapists. Together they aim to support both the informal caregiver and the person suffering from dementia in living at home as long as possible. Accepting this support can be hard for some informal caregivers as they do not always agree on what s best for the person suffering from dementia. Informal caregivers often feel like they know best what the person suffering from dementia wants and needs, as they know them through and through. As stated earlier, overburdening of the informal caregiver is one of the main reasons for people suffering from dementia to get admitted to a nursing home. However, informal caregivers often tend to count themselves out, and when the professional suggests an extra day at the day care facility or scaling up the amount of professional care this can be experienced as offensive by the informal caregiver. 72

73 Yeah and they tell me to put him in day care one day extra. Like they know how he feels. I know him better than anyone else and I see he is happy when being at home. I don t want to just dispose him. Pff This however differs a lot between informal caregivers. Some of them value the help of professionals a lot and they are able to work together with the professionals in a constructive way. They feel supported by the professionals and they value their input. This can be of great benefit for the quality of life of both the professional and the informal caregiver. I am so happy with the people at De Wever. Because of them my husband can still do the gardening. Yeah it might seem like no big deal but since there already is so little he can still do on his own it is of inestimable value for him. I am so grateful for their help Narrative humour Humour as a source of entertainment finds its way during various activities, usually when both informal caregiver and patient are in a relaxed state of mind. Especially the television is a great source of humour. Interesting to see is that it is not really a passive experience of humour, but that the informal caregiver can use the television as a source of inspiration for humour initiation: they explain what just happened to make the patient understand the situation or joke. The more creative caregivers even add their own input to the story. He likes to sit in his chair and look outside all they. Then there is this truck with apples on it and I say: look there you have Karel Appel!. Or when an ambulance passes by for the second time; I say something like He d better not be lost. Also sharing funny stories from children or grandchildren is something they can laugh about together. These stories can sometimes be repeated endlessly without tiring the informal caregiver or the person suffering from dementia. last time I had Peter on the phone, he told me a funny story [ ] when I hung 73

74 up I told Jan and then he laughed and said: dat hebben ze niet van mij hoor (they did not inherit that from me Humour as a coping style Humour is also implemented as a coping style. Usually the trigger for implementing humour is the response of the person suffering from dementia to a specific, possibly confrontational situation. If the informal caregiver notices emotions such as fear or disappointment they are triggered to put the person at ease and they often do so by implementing humour. Usually a first negative response is triggered by the emotions of the informal caregiver but after that the informal caregiver (figure 20) An then I first am upset and angry... Why did he do this, if he hurts himself too bad he can t stay home so I was angry. But then i see his sad face and realise he didn t do it on purpose and I joke: do you think you are the pope, kissing the ground and all By applying humour, the informal caregiver shows for example that the person suffering from dementia did not do anything wrong, that the caregiver isn t angry with them and that everything is fine. informal caregiver person suffering from dementia The aim of coping through humour usually is to comfort the person suffering from dementia. However, as a secondary effect the informal caregiver also puts himself at ease. negative situation or event negative expression switch perspective punchline 74 Figure 20. After a first response the informal caregiver can switch perspectives and implement humour to comfort the person suffering from dementia as well as himself

75 Sharing a smile The informal caregiver is aware of the fact that the person suffering from dementia might not always fully understand the humorous instance. However, this is not experienced as an obstacle. For the informal caregiver the smile of the patient is enough to satisfy them. Sharing this moment of laughter can relieve the tension from the situation and make both of them feel better. If I laugh about something that maeks him laugh as well. I know he might not understand it, but that does not matter. When I laugh he knows it is fine and he feels better For some people humour and especially laughter and or smiling can be one of the last ways to communicate. As talking is no longer possible and even the movement of arms and legs becomes troublesome for the patient, laughing and smiling can still be possible. A smile from the patient towards the caregiver can then be of even greater value. I use humour as often as I can. Normally I wouldn t do that, but now it is almost the only thing he has left, or, we together have left. We cannot talk anymore but we can laugh. But telling something.. that doesn t work However, as stated before, informal caregivers experience that most outsiders do struggle with the cognitive impairment when it comes to communication and possibly also humour initiation. Visitors The people that visit the informal caregiver and person suffering from dementia are often a cause for humour. They interrupt the daily routine, which provides an opportunity for humorous interactions. These visitors can be family or acquintances but also the professional caregivers and volunteers that often support an informal caregiver. Besides to the occasions for humour that these visits create, these external people such as the professional caregiver who comes to help with showering, are very 75

76 much valued for this ability by the informal caregiver. Our neighbour came home this afternoon and the hairdresser was there, and he is always joking around with him and then he said look, this is my new girlfriend, don t tell ons ma (our mother) and Jan! and then he (patient, red.) is having so much fun [ ] That is just beautiful; he is always so engaged Awareness Although there are many instances of humour between the patient and the informal caregiver the informal caregiver did only realize this when attempting the contextmapping study. When humour was discussed in the beginning the informal caregivers tend to be pessimistic. However, over time they gained various insights on humour. Until now I had never realized that we had this, that we still share this, and that this is still there, possible 4.5 Identification of design opportunities Analysis of all clusters ant themes results in various key insights. These key insights are displayed in figure 21. Furthermore several interesting opportunities for design arose. The most interesting ones are selected and served as a basis for future development of the project. The selected opportunities are described in this section. Visitors and humour The visit of someone, whether it is a family member or a professional caregiver such as a physiotherapist or nurse can often break the daily grind. Such an event creates room for humour. This in turn stimulates humour in interaction, not only between the person suffering from dementia and the informal caregiver, but also 76

77 The context of everyday life communication difficulties the informal caregiver can adapt communication to the cognitive level of the patient. for example: o adapt level of verbal communication o increase use of non-verbal elements such as gestures and objects Difficulties in communication from the patient are experienced as rather burdensome; especially when they can not understand the person suffering from dementia. However, a smile is something both of them always understand informal caregiver limited social life the social life of the informal caregiver shrinks drastically which saddens them person suffering from dementia fears Humour sharing memories on experiences of humour triggers awareness on the presence of humour although inevitable; the informal caregiver tries to avoid hospitalization as long as possible events from television or from outside often form an inspiration or basis for humour initiation activities o day care o crossword puzzle o television even if the stimulus isn t understood the interaction can still trigger a smile Guests of the family or a visiting nurse often are a trigger for humorous interactions Figure 21. Key insights from the contextmapping study 77

78 between the two of them and the visitor. In addition, the informal caregiver expresses appreciation for the application of humour by the visitor, regardless of them being a professional caregiver or an acquaintance. The informal caregiver values the ability of a visitor to make the person suffering from dementia feel comfortable and have a good time. Narrative humour There were many examples overheard, in which the informal caregiver functions as some sort of narrator of the humorous stimulus. They build a story around something which is happening at that time, such as on television or something they see when looking through the window. With the informal caregiver functioning as a narrator, he or she tunes the stimulus in such a way that it is, or becomes comprehensible for the person suffering from dementia. By doing so some passive experiences of humour, such as a funny commercial on the television, is transitioned in a more active experience involving the informal caregiver and the person suffering from dementia. This also works the other way around; The informal caregiver can use elements or objects from his or her surroundings to enrich the stimulus being narrated. It has been observed that informal caregivers involve elements such as photographs or objects. Although this might also be the case in regular interactions of humour between people as well, it seems to be especially interesting in the context of dementia. As described earlier, dementia usually affects the area in the brain in which linguistics are processed, at an early stage. Communicating with the use of visual aids such as objects or gestures can enhance a person s understanding of what is meant to be said. It might be an interesting opportunity to facilitate and or stimulate this narrative process of humour initiation. 78

79 Awareness and reflection The contextmapping session brought the informal caregivers some valuable insights. By sharing positive experiences of humour, they began to realize the value of these for both themselves as for the person suffering from dementia. Furthermore, they focussed on the humour they still shared, instead of on the things they no longer share. This creates an opportunity to design triggers for this process of reflection and awareness building. Both the observational research as well as the contextmapping research showed that humour is involved the care giving relationship. However, the informal caregiver does not experience it in that way; they think humour has decreased or even diminished and that their situation is so serious that they don t have much left to laugh about. It is in this discrepancy opportunities for design are to be found: To provide direction for conceptualization, a design goal and interaction vision are formulated in the upcoming paragraph. Both the observational research as well as the contextmapping research showed that humour is involved the care giving relationship. However, the informal caregiver does not experience it in that way; they think humour has decreased or even diminished and that their situation is so serious that they don t have much left to laugh about. It is in this discrepancy opportunities for design are to be found: To provide direction for conceptualization, a design goal and interaction vision are formulated in the upcoming chapter. 79

80

81 Part III: Vision In order to make the transition from analysis to conceptualisation a vision is created in the form of a design goal and an interaction vision. The design goal defines what is aimed to achieve with the concept. The interaction vision provides direction to how the interaction should look like by giving definition to its abstract interaction qualities.

82 Design goal 5.1 Focus and direction One of the most important results from the exploration phase was finding more occurrences of humour within the care giving relationship than expected. However, the informal caregiver does not experience this as such; they feel there is a lack of humour due to the seriousness of the situation. Participating in the contextmapping research stimulated them to reflect and bring up examples. This made them realize that they do in fact experience humour in interaction with the person suffering from dementia. By facilitating the ability to recapture and reflect on humorous occurrences, the informal caregiver was made more aware of the value and power of humour. As a secondary effect, this awareness can stimulate and facilitate the application of humour. The reflection and awareness of humour are considered key points in stimulating, and possibly increasing the application of humour. They will therefore be the starting point of formulating a goal. 5.2 Persuasive game design The aim is to illicit a change in behaviour. DOT expressed a desire towards the development of a game. A relevant approach is that of persuasive game design. Persuasive game design aims to change the user's experience from a real world experience, towards a more motivating game world experience. Subsequently, the aim of the game world experience is to realize specific transfer goals, for instance learning behaviour in the real world (Visch, Vegt, Anderiesen, & van der Kooij, 2013). The model of persuasive game design is displayed in figure22. 82

83 Each of the elements from the persuasive game design model can be further defined with respect to the aim of this project. designer user real world designer + user The real world goal is to lighten the burden on the informal caregiver. This is achieved by stimulating the application of humour in interaction with the person suffering from dementia. In the game world the goal is to make the informal caregivers capture and collect occurrences of humour from everyday life. The gamification element is the building of a collection of humorous game world Figure 22. Persuasive game design model (Visch, Vegt, Anderiesen, & van der Kooij, 2013) instances. The transfer goal is to increase the awareness on the power of humour and the value of sharing a laugh. All of these elements are combined into the persusive game design model which results in figure 23. occurences of humour that are unnoticed designer user real world increase in humour application designer + user Figure 23. Each of the elements of the persusive game design model defined for the chosen design direction capture and collect these game world increase awareness on the value and power of sharing humour build a physical collection of memories of humour 83

84 5.3 Design Goal The design goal is formulated to serve as a guideline for conceptualisation. It is derived from the previously described elements of the game design model and is as follows Creating a game world in which the informal caregiver is invited and supported to capture experiences of humour from the real world. Through the act of collecting, reflection on the experience of humour is triggered. This way, the informal caregiver becomes aware of the value of sharing a laugh with the person they take care of. The awareness that is built motivates and inspires the informal caregiver to apply humour more often. Design Goal 84

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86 Interaction vision 6.1 Interaction vision As the design goal describes the aim of the design, the interaction vision provides guidance on how the goal will be achieved. In the interaction vision the qualities of the design are defined on an interaction level. To put the abstract interaction vision in a more conrete context an interaction scenario will be provided In the interaction vision, the product interaction can be described by the metaphor of a dynamic mosaic. A mosaic is created out of old tiles. Each of these has its own story behind it; where does it come from, what does it mean? The tiles can be used to create a new whole, a mosaic. You pick the tiles that have a meaning for you, which ones you choose is free. The story behind the tiles is personal, known by the creator of the mosaic; its displayed in a central point of the house makes it inviting to others, triggering curiosity. Maybe the one whose tile it used to be also remembers, and you can together revive the story behind the tile, with the tile itself functioning as a tangible element of it. The mosaic is dynamic, meaning it will keep evolving over time. If you find a new piece it can be added, if one loses your interest you can take it out an replace it by another one. All of these interaction qualities are captured in one sentence that will be the interaction vision. 86

87 I want to invite people to build a tangible collection of humorous events and experiences. I want them to be unrestricted in their collection of moments. The collection will be personal, yet inviting to share with others. I want it to be flexible and dynamic, constantly open for change. Interaction Vision 6.2 Interaction scenario Experiences of humour Captured and collected Reflection on these experiences Ah! Haha Haha! That s nice! This happened Haha! A collection is built can be shared with others and changes over time Figure 24. The interaction scenario 87

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89 Part IV: Conceptualisation In the conceptualisation phase, insights obtained from the analysis phase and the vision that is created in the last chapter are combined to design concepts. An iterative approach is adopted, in which design is alternated with explorative sessions. The next chapter will elaborate on this process as well as the proposed concept.

90 Concept direction After exploring several design directions by different rounds of ideation, a specific design direction is selected. This is the starting point for conceptualisation. The general design direction after the first round of ideation was defined as follows: Building a collection of visual tokens, representing memories of humour through an object that is displayed in the home of the person suffering from dementia. The elements of this direction are further defined in the following section. 7.1 Capturing memories The analysis phase revealed that the target group s memories of humour are not easily retrievable, and sometimes not retrievable at all. However, retrieving these memories in a vivid way, triggers reflection and awareness and can therefore stimulate and encourage to apply humour. The inability to recall a memories could be caused by the failure of one or more of the three main stages of the memory process: the encoding stage, the storage stage or the retrieval stage. In practice, storage failures do only occur in case of damage to the brain (Groome, 2006). This is only likely to occur in the person suffering from dementia. This means the forgetting of the humour experience is caused by either encoding failure or retrieval failure. Furthermore, several studies have demonstrated that access to a memory trace can be strengthened by retrieval, whereas access to retrieved memories becomes more and more difficult as time passes (Bjork & Bjork, 1992). A more recent study has revealed that inhibitory mechanisms in the brain cause forgetting, rather than failing or inadequacy of the memory system (Anderson, 2003). This is in conformity 90

91 with the findings of the contextmapping study: the memories of humour are still there, the informal caregiver only needs to be stimulated in the right way in order to be able to retrieve them. 7.2 Tokens The second aspect of the concept direction is the token they collect. The task is to select and collect a token representing a visual memory of a certain experience of humour. Selecting this token, especially the visual aspect of it, triggers a deeper level of processing. The levels of processing theory suggests that the deeper the processing, the further the memory is enhanced (Craik & Lockhart, 1972). Triggering of the deeper memory processing is achieved by stimulation to do more than just recalling the memory. By selecting and collecting a visual token that represents a memory, the storage of this specific memory is enhanced. Another goal of displaying the visual token that is connected to a memory is to trigger the positive feeling that is connected to the memory, possibly unconsciously, and bringing a smile on their face. The collection of memories is displayed in the house. By doing so, the user can be triggered to interact with the concept at any time. Additionally, the user is also subtly confronted with it, even when not directly interacting with it. It can unconsciously trigger the positive emotions of the collected memories. Furthermore, it can trigger and inspire them in the application of humour in situations, in which they might not have thought of applying it before. 7.3 display in the house 91

92 7.4 Game elements The concept direction contains several game elements. These game elements are the motivational elements typical for game design (Visch, Vegt, Anderiesen, & van der Kooij, 2013). The two game elements embedded in the concept direction are collection and completion. The element of collection encourages the user to collect a set of humour related experiences through interacting with the concept. The other element, completion, means that the concept contains certain gaps to be filled by the user, which in turn engages him in the processes. 7.5 Summary The concept direction is to create a product that stimulates and facilitates the collection of humorous memories, in the form of tokens. These memories are displayed on a collection object that is placed in the house. To collect the tokens, the user will be supported in the retrieval of previous memories as well as in the encoding of new memories. By retrieving a memory, the access to the memory trace is strengthened, which makes the memory easier to bring up. Additionally, the creation of a visual token requires deep processing, which further enhances the memory trace. The location where the collection object is placed should be able to trigger interaction with it at any time. Furthermore, it can unconsciously trigger the positive emotions connected to the memories as well as the collection of these memories. It can encourage to apply humour in new situations and therefore support the transfer from real world to game world. 92 Collection and completion are be the game elements that form the starting point for conceptualisation. These elements aim at motivating the user to engage in the interaction with the concept.

93 Concept proposal The concept proposal is the result of several explorations. The main explorations were the two explorative user tests. Detailed set up, and results of these user tests can be found in the appendix F. Figure 25 shows an overview of the conceptualisation process in general. refine design direction ideation ideation vision exploring collection and sharing of humour tokens 1 concept proposal exploring the collection object 2 Figure 25. The iterative cycles of conceptualisation 8.1 The concept elements The concept consists of several elements that stimulate and facilitate the collection of memories of humour related experiences by the informal caregiver. The concept consists of a collection object, a set of inspirational cards and a selection of creative materials. An overview of the concept and the different elements is depicted in figure 26 which is displayed on the next page.. 93

94 collection object connection points for tokens markers A character trait of your partner that makes you laugh A humorous story you read in a newspaper or magazine What did a child do that was really funny? paper sticker set inspirational card set creative materials Figure 26. The concept proposal The collection object The collection object is circular, consisting of multiple entangled strings. The appearance of the object, being an entangled accumulation of strings, is a metaphor for the experience of the user and the emotional upheaval that comes with dementia. Pulling out a string from its entanglement and making it stand for 94

95 a positive experience of humour also holds a symbolic meaning. Out of all the experiences and emotions you select, these experiences are chosen to display and highlight key moments. The strings of the collection object can be pulled out in order to attach a memory token to it. The strings can also be put back if the token is disconnected. The object is designed in such a way that the user is stimulated to collect more memories. However, the empty spots are not obtrusive, therefore the user is only subtly stimulated to expand the collection (figure 27). The circularity makes it approachable from all sides and invites for placement at a more or less central point in the house. This is important, because that way object is not only the carrier for the collection, but that also triggers the users to continue collecting. Additionally, the object s presence in everyday view can act as a stimulant for the application of humour, without having to be actively involved in Figure 27. Pulling out a wire to create an attachment place for a memory token 95

96 the experience. Furthermore, it allows and invites users to directly add the memory while it is still vivid. For the collection object first material and production possibilities were explored. One of the possibilities is to make the strands out of leftover pieces of fineer which are lasercut. The first material and production tests are shown in appendix H Memory tokens The user is stimulated to build a collection of experiences of humour. He does so by taking or creating a token that represents the specific memory. There are multiple possibilities for these tokens as is displayed in figure 29. For part of the memories it is possible to directly take the stimulus as a token. An example is a humorous cartoon from the newspaper. These are type one tokens For some memories it is not possible to directly take the stimulus as a token. For example, when someone opens a bottle of coke and the coke sprays out all over the table. Then, for example, the cap of the coke can be taken as a token of this specific memory. This token then forms a representation for the whole experience with the bottle. This is a type 2 token. For the experiences of humour in which the stimulus isn t contained by an object, there is also another possibility which is to create a memory token. Instead of token stimulus type 1 - stimulus as token concrete difficulty type 2 - take stimulus representation + type 3 - create a stimulus representation abstract Token Figure 28. Different types of tokens 96

97 taking an existing object as a token, the user creates a token by the use of creative materials; he creates an object that reminds him of the experience of humour. This is a type 3 token. To support this process, a selection of creative materials is provided to the user which will be elaborated on later in this section Inspirational cards It can be tough for the informal caregiver to think of memories as humour related experiences, especially in the beginning. When asked more specific questions, however, they bring up memories more easily. The concept is adapted to this finding, by featuring inspiration cards. By the use of these inspiration cards, the user is directed towards more a specific direction to recap a humour experience. The development of these specific questions is based on examples that were gathered during several user tests. The inspirational cards are meant to be slightly challenging. They challenge the user to find many different examples of humorous experiences. Challenging the user enhances motivation to build up the collection. To provide them with an optimal level of challenge, the inspirational cards are placed in a specific order. The user testing revealed that less abstract tokens are easier to think of. Therefore, the sequence starts with stimulating the user to collect tokens of humour that contain the stimulus. The second step is to collect tokens of humour that are more abstract and do not contain the stimulus. The most abstract and thus the hardest type of token is the one that the user is asked to create from an experience. This will be introduced later in the card set. An elaborate overview of all the inspiration cards can be found in appendix G Creative material set The informal caregiver is stimulated to create a token for memories for which he does not have a token or for which the token is impossible or inconvenient to add to the object. Creative materials are provided, such as a selection of coloured 97

98 pieces of paper, a sticker set, a set of markers and wobbly eyes. Selection of these materials is based on previous findings from both the contextmapping research as well as from the iterative user test. The user is free to add other materials which are not part of the concept. Design of the material set is based on findings from the contextmapping session as well as from the iterative user tests. The materials are tailored to the general approach of creating a token as it showed in the explorative research. This approach is schematically displayed in figure 29. browse available materials choose a material for base and some more to create think and pick a memory to capture shape base and add materials check if it is done Done refining by the use of markers 98 Figure 29.. The general approach of token creation. Sometimes more than one round of creation is done

99 Figure 30. An impression of the stickers provided in the concept, Stickers support instant creation Stickers are found easy and quick to use and therefore helpful to form a starting point for the creation of the token. The stickers have a sketchy design, in order to allow the user to combine them with their own creative input. The combination of pictures is based on all examples of experiences that were gathered throughout previous user tests. Figure 30 shows an impression of the stickers. The complete collection is included in appendix I. User exploration revealed that people tend to create a token that is funny in itsself. Part of the material set is therefore aimed at stimulating and supporting the creation of funny tokens, especially the googly eyes and the speech bubbles are aimed at this. An example of how these are used in previous user research is shown in figure 31. Figure 31. Examples of how googly eyes and speech bubbles are used for token creation 99

100 8.2 Scenarios For illustration of the concept several scenario s are developed. Figure 32 is a timeline that shows the process of collecting in general. For staring the collection the focus will lie on memories from the past. When the fisrt tokens are added, the focus will shift more towards the now stimulating the user to capture experiences of humour right after or shortly after they happened. Additionally a more detailed scenario is developed displaying the intended interactions with the different concept elements (figure 33). past memories of experience of humour add token(s) start the collection add token add token future first encounter with concept continue to collect START Figure 32. Timeline showing the collection is started with collecting mamories from the past. Later focus will shift towards the now 100

101 The collection object is placed somewhere in the house A wire is pulled out and a first funny object or picture added For new experiences of humour new tokens are added Haha! Oh yes! I remember That was funny! Or tokens are created and added then If the user needs some help he can pick an inspiration card The tokens are used to share humorous memories Figure 33. User scenario displaying the concept interactions 101

102 The introduction of the concept to the target group will be done by De Wever. Through one of their mantelzorgmiddagen (informal caregiver meetings) the concept will be introduced to the target group. These mantelzorgmiddagen are organised quaterly anddevelop around a specific theme. For this mantelzorgmiddag the theme will be humour and introduction of the concept will be part of it. The product can be obtained through the geheugenwinkel (memory store). This store is an initiative of DOT and provides products and tools related to the area of caregiving and dementia. The intended scenario for introduction of the concept to the target group is displayed in figure

103 The informal caregiver is invited to a mantelzorgmidag He is asked to bring something humorous to share At the mantelzorgmiddag the product is introduced by the use of what the informal caregivers brought Invite Informal caregivers Professional The informal caregiver buys the product from the geheugenwinkel The collection can be started with what he brought to the mantelzorgmiddag Figure 34. Scenario of introduction of the concept to the target group 103

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105 Part V: Evaluation To evaluate the design and to determine if the design goal and interaction vision are met, an evaluative study was carried out. This evaluation was a last iterative step in the design of the concept. This chapter briefly discusses the approach of the study and the most important findings. The conclusions of the evaluative study were translated into adaptations of the concept. This chapter also elaborates on recommendations for further research and development on the proposed concept. Lastly the chapter will be concluded with a personal evaluation.

106 Concept evaluation It is important to see how the interactions develop in the target context ; the home situation of the person suffering from dementia. An evaluative study shows if the design goal and interaction vision are met. Moreover, the evaluative study provides guidance for some final adaptations to the concept. The detailed set up and results are included in appendix JThis section will briefly address the aim of this study, its set up and the most important findings. Furthermore, it will elaborate on adaptations that are made to the concept. 9.1 Set-up Three informal caregivers were involved in the evaluation study. The aim was to involve a variety of men and women, both spousal caregivers as well as informal caregivers who take care of their parents. However, the variety and number of participants was limited due to the small number of people willing to participate. The study was conducted with three woman who take care of their spouse suffering from mild to moderate dementia. All participants were provided with a package containing the prototype as well as a report booklet. Due to time restraints, a simplified collection is used for the evaluative study. The contents of the package that the participants were provided with are displayed in figure The package was personally introduced to the participants after in which the prototype remained in their house for one week. During this week, they explored the concept and reported on their experiences in the report booklet. At the end of the week, the participant was personally visited again and a semi-structured interview was conducted.

107 The results were analysed to evaluate the concept. Guidelines in the evaluation were the design goal and the interaction vision as they were formulated in chapter 3. The main topics for evaluation were: Is the user invited to capture experiences of humour Is the user supported in capturing experiences of humour Figure 33. The package used for the evaluative study Does the user experience freedom in building his collection Is the collection experienced as personal Does it allow and invite to share Does this process trigger reflection on the power of humour and the value of sharing a laugh? There are more questions to be answered in order to evaluate the full effect of the concept, being: Does this process trigger awareness of the value of sharing a laugh Is the user encouraged to increase the application of humour However, it considered to early to evaluate these last two points. They were therefore only very briefly considered and further elaborated on in the recommendations paragraph of this report. 107

108 9.2 Results Due to unfortunate, persona l circumstances of the participants only one of the three participants could fully explore the concept throughout the week. The other two participants were only able to briefly go through the report booklet once, and for a very short moment. This yielded limited results. However, the limited findings were analysed to generate as many insights as possible. The most interesting results per participant are presented in this paragraph. Detailed results can are to be found in appendix I. Participant 1 During the week of the test the participant is going through a very tough time as the family is working on permanent hospitalisation of her husband. He does not see the necessity of hospitalization and the situation at home has become extremely tense. The participant states that there is no room for humour at all, and that there was no suitable moment to explore the concept. However, she states that this would have been different when she would have been involved a few months earlier. The participant has placed the object and accompanying materials on the dining table in the living room. She has not attached anything to the collection object. However, she has written down some things in the report booklet. What she has written down are the memories on experiences of humour. She has used a few stickers to illustrate these stories (figure 34). Next to one experience, she has placed the inspirational card that inspired her to think of this memory (figure 35). As instructed by the report booklet she has asked someone else to share a memory of humour. She asked her daughter and while she tells the story during the interview, she begins to smile. 108

109 Figure 34. Participant one has written down a memory in his reporter booklet and illustrated it with the stickers. Figure 35. Placement of one of the inspirational cards next to the writing on a memory of humour. The participant explains that she found it quite hard, especially because of the current situation with her husband. Furthermore she states that she wasn t sure about the purpose of the object and she therefore chose to only work with the booklet because this was clearer for her. Participant 2 Participant two has placed the collection object on the dining table in the living room, next to the open kitchen (figure 36). The rest of the materials are placed in the drawer of the same table. The participant has attached pieces of paper to the object, all of the same shape and colour. On the pieces she has written the insights she said she gained during the process (figure 37). She states she really focused on finding out Figure 36. Placement of the collection object by participant two: on the dining table in between the living room and the open kitchen. 109

110 things that were useful for the research. She didn t think her personal experiences were useful and therefore she put these in the booklet. In the booklet she has written several humorous memories which she has made these visual through the use of pictures from the newspaper and pictures she printed herself (figure 38). Figure 37. Insights written on the cards attached to the object by particpant two Figure 38. Memories put in the reporter booklet. Printed pictures are used for illustration. Figure 39. A funny postcard which the particpant refered to during the interview but had not put on the collection object Participant two tells she has worked on it together with her husband. She frequently asked him about his memories of humour in which she used the inspiration cards. Whenever she wanted to add something, she discussed it with her husband. They both really enjoyed working on the collection. However, a lot of things she refers to during the interview are not added to the collection object nor to the booklet, for instance a funny postcard her husband got from their daughter (figure39) The participant states that she didn t do so because it was probably not useful for the research. The participant states that she only put in memories that she thinks will be very useful to her: sharing humour is just another form of giving someone positive attention; like giving compliments it is just a really nice tool to make someone happy Participant three Participant three has placed the object on the dining table in the centre of their living room that has an adjoining kitchen area. The other materials are placed around it (figure 40). 110

111 Participant three keeps stating that she hopes she has done the right thing. The explanation in the booklet was hard to understand for her and she did not really know how to use all the materials. She added two inspirational cards to the object, on which she has written the memory on the backside (figure 41). Other memories she has written in the report booklet for which she has used several stickers that she coloured with the markers. During the interview she elaborates on quite a few humorous things that happened throughout the week, such as a fun cartoon she shared with her husband and a story that her grandchild told. She states that these experiences have not been added to the booklet or to the object because she didn t think it was useful. After reconsideration, she thinks it would have been really nice if she had done so. Figure 40. Placement of the object by participant three People who visited the home of the participant all asked about the object on the table. When the participant explained what it was, a lot of people shared a memories of humour they had. Most of these stories relate to either the informal caregiver or the person suffering from dementia. The participant states that she has not added them as she thought these weren t useful for the research since these other people were not involved in the research. Figure 41. Use of the inspirational cards by writing on the backside and adding them to the collection object. 111

112 9.3 Conclusions From the results several conclusions can be drawn. The most important findings per topic are discussed in this section. More elaboration on each of the topics can be found in appendix I Invite to collect experiences of humour It can be concluded that the concept successfully invites participants to collect their memories of humour. However, all of them built (part of) their collection of memories not on the object but in the report booklet. As the report booklet is not part of the concept, but rather a part of the research set up, it is expected that results would be different when the user explores the concept without it. However, another reason for collecting in the booklet instead of on the object might be that the user finds guidance in the questions that are provided in the reporter booklet. Furthermore, the insecurity the user experiences might cause them to collect the memories in the closed form of a booklet rather than on the open and showing form of the object. This search for guidance also reveals how the participants use the inspirational cards. They look for guidance and seem to find it in those cards. They put the cards with their writings on their memories. By doing this they seem to assure themselves that what they are doing is the right thing. The inspirational cards and other materials that are part of the concept are kept in or near the same place as the collection object. This is favourable because it stimulates the user to create and to continuously build the collection. However, the loose materials are probably cleared away after a period of time which might cause them ending up away from the collection object Invite to collect experiences of humour The facilitation of the process of collecting tokens needs improvement. As stated before, users seem to feel unguided and insecure which also goes for the process

113 of collecting and creating the memory tokens. The lack of guidance results in insecurity rather than in the experience of freedom and inspiration. Most of the time the user is looking for how they should use the materials provided rather than trying to find their own way. More guidance on how to use the materials provided is necessary. Furthermore, it remains hard for the user to create a visual token. About half of the memories are included solely by writing them down. Although this can be considered as collecting the memory, it does not fit the goal of letting them create a visual token. This can possibly be covered by providing them with more guidance in the process. However, as creating a visual is seen as challenging for them, it might be more interesting to look for a more stepwise approach Freedom in building the collection The participants seem to feel limited in their freedom of collecting. This appears to be mainly ascribable to the research setting in which the study takes place. Two participants repeatedly state that they are unsure whether what they say and do is relevant for the research. Furthermore, they consider whether what they add would be funny or useful to share during the interview. The participants clearly focus on the goal rather than on the means of building the collection, which is a limiting factor for their freedom. During the interview it was often brought up that they wanted to collect things, but did not because they thought it would not be useful. As mentioned earlier, part of this can be ascribed to the setting of this study, including the reporter booklet asking them about their insights, and the interview, which they knew would be conducted in advance. However, it also shows that if sharing everything they collected is the purpose of the collection, it will most likely limit the participant in their freedom and should therefore be reconsidered. 113

114 9.3.4 Personal collection Elaboration on the previous theme of experienced freedom already reveals the collection is not completely experienced as personal. The user does not seem to experience that he or she is building the collection for himself and the people close to him. Focus is really on the input they want to give for the sake of the study. However, the memories that are collected are really their own memories, or of people close to them. Moreover, just taking the concept out of the research context is expected to already improve the personal experience of the collection Allow and invite to share All participants have involved others in their interaction with the concept. Most of the time the person suffering from dementia is involved but also other people such as family members and acquaintances who visit the participant. It can be concluded that the concept triggers to the users share. When the person suffering from dementia is involved, it is often at another point in the process than was previously expected. The concept was designed with the intention of sharing the memories after they have been collected with the created token as a trigger and support in doing so. However, the user already tends to involve the person suffering from dementia during the collection and creation part. Together they discuss what they experienced and whether or not to add it to the collection. Other people are involved in different ways. The appearance of the object triggers questions from guests about the purpose of it. This stimulates the informal caregiver to explain it, after which some of the visitors come up with some ideas about what they could add. However, this interaction was mainly triggered by the appearance of the object itself rather than by the tokens attached to it, as they were rather limited. 114

115 Another interesting interaction of sharing is triggered by a task in the report booklet: ask someone else to share a memory on an experience of humour. This is not only inspiring for the user but also an enjoyable experience in itself; it might therefore be interesting to include activities like these in the concept as well Triggering reflection on the power of humour The set-up and the results of this study are too limited to be able to evaluate the concept. The duration of usage is too short and two out of three participants have not explored the concept to its full extent. However, the study does show some relevant insights on this topic. With these insights, the concept can already be improved. Currently the user seems to be too actively looking for a purpose in the concept. They tend to look for a deeper layer: what is it that I should learn from this rather than undergoing the positive experience caused by the means of the interaction itself. As stated before, this can partially be ascribed to the research setting. The aim of triggering the reflection on the value of humour resulted from insights gained from the earlier contextmapping research. Collecting memories of humour and discussing them, triggered valuable reflection in most participants. The aim of the concept is to trigger this reflection, however, it does not seem to do so at this point. It might be the case that it was the combination between collecting and discussing with peers that triggered this reflection. Although the concept triggers discussion with other people, it does not seem to have the same effect as discussion with peers. 115

116 9.4 Implementations The evaluative study is a last iterative step in the development of the concept during this project. The conclusions drawn from the evaluative study are translated into adaptations to the concept. The following section shows the adaptations made to the concept The inspiration cards as token starters The inspirational cards are adapted to the unintended use of the participants in the evaluative study. They are made bigger and thicker so they can function as a starting point and canvas for the creation of a memory token. Additionally, instead of only trying to get the user to create a visual token, the tokens can now be a combination of both writing and visuals. The user can start the creation of the token by writing but is still invited to also create a visual. This visual is an important part, for instance, when a visual is connected to the collection object, these tokens become more powerful in triggering the memory behind the token. By allowing a combination of both writing and visualisation, it is tried to meet the tendency of the user to write, but still invites to explore the visualisation. The new design of the inspirational cards is shown in figure 42. Furthermore, extra inspirational cards are included which actively stimulate the informal caregiver to find inspiration in the experience of humour from other people Integration of the concept elements The collection object is integrated with storage possibilities for the other elements of the concept. These storage possibilities allow for keeping all the elements of the concept together while they are still visible and can therefore trigger the user to capture a memory. The overall design of the integration of all elements is depicted in figure

117 Using the backside as basis for token creation What whas the last situation in which you wanted to contain your laugh but just couldn t? description: here the user can create the visual memory there is room for writing as well Figure 42. The new design of the inspirational cards. They now can function as a base for token creation. Furthermore they both support writing as well as they stimulate the creation of a visul inspirational cards markers stickers Figure 44. Storage possibilities for the materials that belong to the concept. 117

118 9.5 Recommendations Multiple findings from the evaluative study have not yet been elaborated. For these findings recommendations will be made in the upcoming section. Furtheremore there will be additional recommendations for future development of the concept Clear, stepwise user instruction manual With the current design, the user experiences a lack of guidance. This lack of guidance causes doubt concerning the use of the concept and accompanying materials. The explanation given to the user in the beginning is not enough to introduce them to this new concept. The user needs clear information on all elements of the concept as well as on how to interact with the concept. The manual needs to contain simple and clear language and a stepwise explanation on the approach of building the collection Integration with a workshop To make the full transition from building up the collection to reflection and awareness in the real world more support is needed. Sharing with the person suffering from dementia as well as with other people that visit the homes of the informal caregiver s triggers some reflection, but not to the same extend as with the contextmapping session. It is therefore interesting to implement a workshop. During this workshop peers can discuss their experiences by the means of examples they bring from their collection object. By sharing these examples under guidance of a professional, the group of informal caregivers can work towards gaining insights together. 118 Important for this workshop is that not the whole collection object and tokens collected is involved. This because previous studies showed that when all needs to be shared, freedom is limited and inscurity is triggered. Making the particpants bring one or two tokens to share should be enough

119 9.5.3 Future research and development As stated earlier the evaluative study was limited by both its set-up as well as by unforseen personal circumstances from the participants. It is therefore recommended to set up another, more extended evaluative study. Recommended is to include at least 5 particpants this time and to provide them with the concept with the aforementioned adaptations implemented. The duration of this study should be longer than a week in order to evaluate the interactions over a longer period of time. The questions as they were used in the previous evaluative study can serve as a guidance. Before the recommended evaluative study it is advisable to develop and thorougly test the instruction manual. It is important to develop the manual in scuh a way that the user understands it and does not feel insecure on the use of the product. Recommended is to first test, evaluate and enhance the instruction manual before testing the complete concept. For development of the instruction manual it is advisable to involve the user group. Additionally the graphic design of the stickers as well as of the inspirational cards can be developed. Currently it is very basic and the cohesion between all of the seperate elements can be enhanced by a solid graphic design of these. After this evaluative study the concept should be improved based on the findings. Furthermore it might be interesting to expand and or adapt the set of inspirational cards as well as the sticker sets regarding the findings of the new evaluative study. For the material of the collection object it is recomended to do further explorations concerning the material. Currently the material is rather fragile. It requires to be handled with care which is not ideal for the intended interaction of repeatedly taking out and putting back in the different strands. It is interesting to do further testing with plastics. 119

120 Personal evaluation When looking back on this project I think I have learned at least as much as I have learned in the 5.5 years before the start of my graduation. No doubt it has been the toughest project I have ever done. My own project Already from the start of my first master projects I have been looking forward to doing my graduation project alone, by myself. Although I realized that team work has its benefits I really wanted to do a project in which I could go my own way. And I think that is what I did in this project, I went my own way. However, I did not realize beforehand how far this whole going-your-own-way-thing was going to take me away from my comfort-zone. Within team projects you can, to some extent, choose the easy route; fulfilling tasks you are good at and feel rather comfortable with. This graduation project did not have easy escapes anymore, I had to rely on myself and do it, mostly, on my own. Although I realize this has taught me a lot, it also surprised me how overwhelming this responsibility was for me. The end result For the end result I can say two things. On the one hand I can honestly say to myself that I have given all that I had in me. On the other hand I can say that I would have liked to see the concept to be developed a bit further than it is now. I think there are a few reasons for this. One is that I really underestimated the amount of time it takes to setup studies with participants in a professional setting such as that of De Wever. The communication with the commissions but also the recruitment of participants was far more time consuming than I had anticipated on. And then when results fall short, there is no possibility of doing it over in the limited amount of time you have left. 120

121 Another important reason is I think the struggles I experienced during the ideation phase. My creativity was severely limited and I felt like it was somewhere there, but had no idea how I could reach it. This took me quite a lot of time on which I had not anticipated beforehand. However, although it took time I don t think there would have been another way to go through this. I am glad I did not take an easy escape, I am happy that I took the time that was needed and that in the end this really took the concept to a higher level. A non-ide-company I think working with a non-ide company has had its pro s as well as its con s. I loved how the company was interested in the methods I used and how we together worked on translating these into different other disciplines. I enjoyed sharing my approach and findings with all of the people at conferences and loved to learn about all these other areas such as health care and psychology. However, I sometimes also struggled in bringing across the approach of designing for interaction. Already during the fisrt interview with the company I was asked if I had any ideas or sketches on what the final design was going to look like. Off course I could explain why I did not have these yet, but sometimes this put me under pressure and made it quite a challenge to be persistent in my approach. Organising sessions with other IDE graduates The sessions I organised with other students have been of incalculable value. At first organising these sessions was quite a challenge for me personally. I did not know if people would be interested and I was a bit insecure on how to set-up a meeting like this. However, after the first meeting turned out great I think about 5 more followed. These sessions are not only valuable as the other people give you useful insights and ideas, also working on their projects showed to inspirational and insightful. As I had no experience in organising sessions like these I think I have also really developed myself in this. The casual setting and the openness of the other students 121

122 allowed for free exploration of a large variety of creative methods. Next to the inspiration these sessions gave me for the project, they also have taught me quite a lot on the dynamics and possibilities of sessions like these. Perfectioni is a moving target There is always more to research, more to design. Making decisions and keeping focus has been one of the biggest challenges of this project. Almost anything that crossed my path seemed interesting and everything felt like I had to further explore and investigate it. I did not want to leave anything uncovered. And although a curious attitude is valuable, I think it can be quite harmful as well. I think the most dangerous combination is when this curiosity meets perfectionism. When these together meet the fear of failure, well, there is the devil to pay. When thinking back on my project I realize there have been various moments in which it would have been very beneficial to be more clear and decicive on chosing a direction. Although I realize I still need to work on this I also realize how far I have come. As opposed to for example my bachelor s end project there hasn t been one moment in which I considered giving up. I took onto this project and haven t let go ever since. 122

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124 References Alzheimer Nederland. (2014, February 4). Aantal mensen met dementie. Opgehaald van Alzheimer Nederland: onderzoek/2014/februari/aantal-mensen-met-dementie.aspx Alzheimer s Association. (2014). Alz.org. Opgehaald van What is dementia: Vascular Dementia: Anderson, M. C. (2003). Rethinking interference theory: executive control and the machanisms of forgetting. Journal of memory and language, Bayles., K. A., Tomoeda, C. K., Cruz, R. F., & Mahendra, N. (2000). Communication abilities of indiciduals with late-stage Alzheimers Disease. Alzheimer Disease and Associated Disorders, Berlyne, D. E. (1972). Humor and Its Kin. In J. E. Goldstein, & P. E. McGhee, The Psychology of Humour (pp ). New York: Academic Press. Bjork, R. A., & Bjork, E. L. (1992). A new theory of disuse and an old theory of stimulus fluctuation. In S. K. A.F. Healy, from Learning processes to cognitive processes: essays in honour of William K. Estes (pp ). Hillssdale, NJ: Erlbaum. Buffum, M. D., & Bord, M. (1998). Humor and well-being in spouse caregivers of patients with Alzheimer s disease. Applied Nursing Research, Buijzen, M., & Valkenburg, M. P. (2004). Developing a typology of Humor in Audiovisual Media. Media Psychology, Butcher, H. H. (2001). The Experience of Caring for a Family Member With Alzheimer s Disease. Western Journal of Nursing Research, Cambridge Online Dictionaries. (2014, May 22). Retrieved from Humour: cambridge.org/dictionary/british/humour_1?q=humour# Craik, F. I., & Lockhart, R. S. (1972). Levels of processing: A framework fot memory research. Journal of verbal learning and verbal behaviour, Cuppens, K. W. (2012). De invloed van dementie op de expressie van humorbeleving. 124

125 Unpublished work. De Boer, M. H. (2007). Suffering from dementia - the patient s perspective: A review of the literature. International Psychogeriatrics, Ebbinghaus, H. (1885). Über das Gedächtenis: Untersuchungen zur experimentellen Psychology. Leipzig: Dunker & Humbolt. Finnema, E., Dröes, R., Van Der Kooij, C., De Lange, H., Rigter, H., Van Montfort, A., & Van Tilburg, W. (1998). the design of a large-scale experimental study into the effect of emotion-oriented care on demented elderly and professional carers in nursing homes. Archives of Gerontology and Geriatrics, Fogg, B. (2009). A behavioral model for persuasive design. Proceedings of the 4th international conference on persuasive technology (p. 40). ACM. Fogg, B. (2009). The behavior grid: 35 ways behavior can change. Proceedings of the 4th international Conference on Persuasive Technology (p. 42). ACM. Groome, D. (2006). An introduction to cognitive psychology. East Sussex: Psychology Press. Hendry, K. C., & Douglas, D. H. (2003). Promoting quality of life for clients diagnosed with dementia. Journal of the American Psychiatric Nurses Association, Jacomb, P. A., & Jorm, A. F. (1998). Personality change in dementia of the Alzheimer type. Geriatric Psychiatry, Katsuno, T. (2005). Dementia from the inside: how people with early-stage dementia evaluate their quality of life. Agein and Society, Keith-Spiegel, P. (1972). Early conceptions of Humor: Varieties and Issues. In H. J. Goldstein, & P. E. McGhee, The Psychology of Humour (pp. 4-34). New York and London: Academic Press. Liptak, A., Tate, J., Flatt, J., Oakly, M. A., & Lingler, J. (2013). Humor and Laughter in Persons With Cognitive Impairment and Their Caregivers. Journal of Holistic Nursing, Lynch-Sauer, J. (1990). When a family member has Alzheimer s disease: A phenomenological description of caregiving. Journal of Gerontological Nursing, Martin, R. A. (2003). Sense of Humor. In S. J. (Eds.), Positive psychological assessment: A handbook of models and measures (pp ). 125

126 Martin, R. A., Puhlik-Doris, P., Larsen, G., Gray, J., & Weir, K. (2003). INdividual differences in uses of humor and their relation to psychological well-being: Development of the HUmor Styles Questionnaire. Journal of Research in Personality, Martineau, W. H. (1979). A Model of the Social Functions of HUmor. In J. H. Goldstein, & P. E. McGhee, The Psychology of Humor (pp ). New York and London: Academic Press. McGhee, P. E. (1972). On the COgnitive Origins of Incongruity Humor: Fantasy Assimilation versus Reality Assimilation. In J. H. Goldstein, & P. E. McGhee, The Psychology of Humor (pp ). New York: Academic Press, Inc. Meyer, J. C. (2000). Humor as a Double-edged Sword: Four functions of Humor in Communication. Communication Theory, Moos, I. (2011). Humour, irony and sarcasm in severe Alzheimer s dementia - a corrective to retrogenesis? Ageing and Society, Nada, H. (2008, November 11). Alzheiemer s Disease New Look. Opgehaald van Nile Herbs: Neary, D., Snowden, J. S., Northen, B., & Goulding, P. (1988). Dementia of frontal lobe type. Journal of Neurology, neurosurgery and Psychiatry, Ory, M. G., Yee, J. L., Tennstedt, S. L., & Schulz, R. (2000). The Extend and Impact of Dementia Care: Unique Challenges Experienced by Family Caregivers. In R. Schultz, Handbook on Dementia Caregiving (pp. 1-32). New York: Springer. Oxford Dictionaries. (2014, 05 22). Opgehaald van Humour: com/definition/english/humour?q=humour Peeters, J., Werkman, W., & Francke, L. A. (2012). Dementiemonitor Mantelzorg: Problemen, zorgbehoeften, zorggebruik en oordelen van mantelzorgers. Utrecht: Nivel. Petry, S., Cummings, J. L., Hill, M. A., & Shapira, J. (1988). Personality Alterations in Dementia of the Alzheimer Type. Archives of Neurology, Pien, D., & Rothbart, M. K. (1976). Incongruity in Children s Humor: A Reexamination. Child Development, Provine, R. R. (2013). Contagious laughter: Laughter is a sufficient stimulus for laughs and smile. Bulletin of the Psychonomic Society,

127 Raviv, A. (2013). Humor in the Twilight Zone : My Work as a Medical Clown With Patients With Dementia. Journal of Holistic Nursing. Ruch, W. (1988). Sensation seeking and the enjoyment of structure and content of humour: Stability of findings across four samples. Personality & Individual Differences, Ruch, W., McGhee, P. E., & Hehl, F.-J. (1990). Age differences in the enjoyment of uncongruity-resolution and nonsense humor. Psychology and Aging, Samson, A. C., & Gross, J. J. (2012). Humour as emotion regulation: The differential. Cognition and emotion, Saunders, P. A., de Medeiros, K., & Bartell, A. (2011). Oh he was forgettable :Construction of delf identity through use of communicative coping behaviors in the discourse of persons with cognitive impairment. Dementia, Sleeswijk-Visser, F., Stappers, P. J., Van der Lugt, R., & Sanders, E. B. (2007). Contextmapping: Expieriences from Practice. CoDesign, St. James, P. J., & Tager-Flusberg, H. (1994). An Observational Study of Humor in Autism and Down Syndrome. Journal of Autism ad Developmental Disorders, Stappers, P. J., & Sanders, E. B.-N. (2003). Generative Tools for Contextmapping: Tuning the Tools. CoDesign, Stevens, J. (2012). Stand up for dementia: Performance, improvisation and stand up comedy as therapy for people with dementia; a qualitative study. Dementia, Strick, M., Holland, R. W., Van Baaren, R. B., & Van Knippenberg, A. (2009). Finding comfort in a joke: consolatory effects of humour through cognitive distraction. Emotion, Syuzi. (2013, Novermber 5). Blog: E-textile Pillow for Communication Between Dementia Patients and Family. Opgehaald van Fashiningtech: profiles/blogs/e-textile-pillow-for-communication-between-dementia-patients-and- Takeda, M., Hashimoto, R., Okochi, T., Okochi, M., Tagami, S., Morihara, T.,... Tanaka, T. (2010). Laughter and humor as complementary and alternative medicines for dementia patients. Complementary & Alternative Medicine, 10-28? Tiraboschi, P., Hansen, L. A., Thal, L. J., & Corey-Bloom, J. (2004). The Importance of Neuritic 127

128 Plaques and Tangles to the Development and Evolution of AD. Neurology, Vaillant, G. (2000). Adaptive mental mechanisms. Their role in a positive psychology. American Psychologist, van der Kooij, C. (2002). Gewoon lief zijn? Het maieutisch zorgconcept en het verzorgen van mensen met dementie. Amsterdam: Boom. Visch, V., Vegt, N., Anderiesen, H., & van der Kooij, K. (2013, May). Persuasive game design a model and its definitions. Opgehaald van Persuasive Game Design: ide.tudelft.nl/studiolab/persuasivegamedesign/2013/04/29/persuasive-gamedesign-a-model-and-its-definitions/ Walter, M., Hënni, B., Haug, M., Amrhein, I., Krebs-Roubicek, E., Müller-Spahn, F., & Savaskan, E. (2006). Humour therapy in patients with late-life depression. International Journal of Geriatric Psychiatry, Weisefeld, G. E. (1993). The Adaptive Value of Humor and Laugther. Ethology and Sociobiology, Wildevuur, S. (2013, December 20). Blog: From smart textiles to nonpharmacological solutions. Opgehaald van Waag Society: Yip, J. A., & Martin, R. A. (2006). Sense of humor, emotional intelligence, and social. Journal of Research in Personality, Zigler, E., Levine, J., & Gould, L. (1966). Cognitive Processes in the Development of Children s Appreciation of Humor. Child Development,

129 Figure references Figure on page 10: The setting of Into D mentia available from zorginnovatie.nl/wp-content/uploads/2014/01/ivan-wolffers-in-id-op-fbts.jpg (accessed on July 7th 2014) Figure on page 11: The interactive projection table of Into D mentia available from (accessed on July 7th 2014) Figure on page 11: Tactile Dialogues available from profiles/blogs/e-textile-pillow-for-communication-between-dementia-patients-and- (accessed on July 7th 2014) Figure on page 11: Vigour Bhömer, M. (2014, May). De Wever beweegt mee hoe textiel beweging kan bevorderen. Poster presented at the annual symposium of UKON, Nijmegen, The Netherlands Figure on page 20: Funny spelling mistake available from (accessed on August 9th 2014) Figure on page 28: General functions of the brain available from psychlawjournal.com/2013/11/study-finds-brain-functioning-tests-may.html (accessed on March 5th 2014) 129

130 Abstract Dementia Dementia is a collective term for about fifty diseases, describing a wide range of causes and symptoms associated with cognitive decline. This cognitive decline is caused by the decrease of nerve cells and/or the connections between nerve cells and usually starts with memory loss, followed by difficulties in communication and verbalization. In later stages bodily functions become affected as well. Dementia is progressive and although the process can sometimes be delayed by the use of medication, it cannot be cured. Informal caregiving Approximately 70% of people with dementia live at home and are taken care of by informal caregivers, who on average spend 20 hours a week on caregiving for the duration of five years. Informal care is mostly provided by spouses, but also by other family members or acquaintances. Providing informal care can be very burdensome both emotionally as well as physically. The informal caregiver has a personal bond with the person he takes care of. The person they take care of slowly disappears and meanwhile the care they have to provide gets more and more extensive. Many informal caregivers therefore are overburdened Humour as coping In order to relieve the burden of providing informal care there are several coping possibilities of which a very powerful one is humour. Next to the positive effects humour can have on one s physical health such as reducing the release of stress hormones as well as massaging one s internal organs it also has beneficial psychological effects. It can enlighten the emotional burden of the situation and positively influence social relationships. 130

131 Although humour can be very beneficial, informal caregivers often experience a lack of humour in the care giving relationship. They feel as if there is nothing left to laugh about in the burdensome situation of dementia and informal caregiving. However, research within this project has shown that there actually are quite a few moments of humour between the informal caregiver and person with dementia. It is in this discepancy between the perception of the informal caregiver and the actual situation that the opportunity for design is found. The concept of Amarant By taking the personal humour experience of the informal caregiver and the person suffering from dementia as a starting point the concept of Amarant aims to emphasize the positive experience that is triggered by humour. By doing so it stimulates awareness on the power of humour and the value of sharing a laugh. This awareness stimulates and support the informal caregiver to apply humour as a powerful tool to enlighten the situation for both himself as well as for the person who is suffering from dementia. The concept is based on the model of persuasive game design. It stimulates and facilitates the informal caregiver to capture memories of humour in the form of tokens. These tokens form a visual and tangible representation of the experience of humour. A token can contain the stimulus, such as a funny cartoon from the newspaper but can also form a representation of the stimulus, such as a cap of a coke bottle that represents that time when you opened a bottle and it sprayed all over your face. Furthermore it is possible to create a token yourself by the use of several creative materials that are provided in the concept. The package of creative materials is developed by doing several explorative tests on how people capture memories of humour in the form of tokens. The set of creative materials consists of markers and stickers which are simple, sketchy depictions of elements such as animals, people and objects. The collection of tokens is displayed in the house. By doing so, the user can 131

132 be triggered to interact with the concept at any time. Additionally, the user is also subtly confronted with it, even when not directly interacting with it. It can unconsciously trigger the positive emotions of the collected memories. Furthermore, it can trigger and inspire them in the application of humour in situations, in which they might not have thought of applying it before. In order to support the informal caregiver and stimulate him to interact with the concept over a longer period of time the concept includes so called inspirational cards. These cards provide specific questions about the experience of humour. By providing the informal caregiver with a more specific direction every now and then, it is easier for them to recall memories of humorous events. Examples of queestions on the inspirational cards are: What was the last situation in which you wanted to contain your laugh but just couldn t? and Do you remember having a funny slip off the tongue? What was it?. The backside of these inspirational cards can be used for token creation. Room is provided to create a visual as well as to write down a short description. The created token can then be connected to the collection object. 132

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135 Appendices Appendix A: Appendix B: Appendix C: Appendix D: Appendix E: Appendix F: Appendix G: Appendix H: Appendix I: Appendix J: results observational study sensitization materials contextmapping study collage making materials Make and Say part of contextmapping study transcription of the discussion of the contextmapping study results of the generative session (booklets; collages) explorations of conceptualisation phase first material tests list of questions for inspirational cards sticker set detailed setup and results of evaluative study 135

136 Appendix A. Results of the obsercvational study Situat+A1:J36ion Main form (verbal/physical) Subject Current activity Initiator Auditor Mrs. J. gets asked by mrs. C what she is wearing around her neck and she answers: It s a scarf; I found it in front of the door I respond seriously: what Verbal a coincidence that it matches your T- shirt. Mrs. C (towards me): you shouldn t believe her she always makes up things Mrs. J Coffee moment at start of the day Mrs. J / Mrs. C Me, rest of the coffee tab (all woman) Mr. P introduces himself: Hi I m Piet but there are very many Piet s her so that is convenient for us as mentally challenged Verbal People suffering from dementia Coffee moment at start of the day Mr. P me, rest of the coffee tab (mixed man and woman) When setting the table Jan (HCP) throws a tablecloth at Mrs. A Physical Setting the table HCP Jan Mrs. A The visitors have to divide into groups Mr. G does some sort of silly walk when walking to the other table Physical Moving from one room to the other for group conversation Mr. G Whoever is watching Mr. G has been stone carving and has his hands covered in white dust. He offers mrs. T to shake hands with him and so she does Physical Cleaning from stone carving Mr. G Mrs. T Drinking coffee together at the beginning of the day. Mrs. C tells about her dad who was a notary. HCP Franca adds: yes, he was highly intelligent (hoogbegaafd). Mrs. J: yes in our family they were also highly intelligent mrs. C: yes, except for you isn t it? Someone in the group tells about an old book she has. Someone says: from 1936?! While the conversation continues mr. G says: 1900, oh no, 1600! Jan compliments mr. G on his smartness mr G. responds: yes I m so smart, that is why I m here isn t it Verbal Mrs. J Coffee moment at start of the day Mrs. B Rest of the coffee table (a woman) Verbal the book Lunchtime Mr. G no-one in particular Verbal Himself (mr. G)? Mr. G HCP Jan Someone sings: zo blij, zo blij, dat mn neus van voren zit en niet opzij. Mrs. C: no off course not because that is where your ears are Verbal The song Group conversation Mrs. C no-one in particular 136 the subject is the municipality Goirle. Someone suggest that that is part of the bigger municipality of Tilburg with which part of the group disagrees. One lady reacts quite fierce: "oh nono! It is Verbal not! Im sure it is an independent The lady who reacted fierce Group discussion (led by HCP Franca, consisting of half of? the group, all woman) Rest of the group at the table

137 Current activity Initiator Auditor Response Goal Form Coffee moment at start of the day Mrs. J / Mrs. C Me, rest of the coffee table (all woman) Group laughs Entertainment Irony (verbal) Coffee moment at start of the day Mr. P me, rest of the coffee table (mixed man and woman) Mrs A. laughs and starts to help with setting the table Entertainment Satire Setting the table HCP Jan Mrs. A Mrs A. laughs and starts to help with setting the table Mrs A. gets involved in the routine of table setting Surprise Moving from one room to the other for group conversation Mr. G Whoever is watching No response No effect Clownish Cleaning from stone carving Mr. G Mrs. T Mrs. T shakes hands and looks at her hand which is now also Entertainment, covered in white dust. accomplishment Mr. G laughs with accomplishment. Mrs. T smiles Slapstick Coffee moment at start of the day Mrs. B Rest of the coffee table (all woman) Whole group laughs Entertainment de leukste thuis Satire Lunchtime Mr. G no-one in particular Some people snigger about the first guess, then no further response to mr. G None Parody? Mr. G HCP Jan Both laugh None Irony (sarcasm) Group conversation Mrs. C no-one in particular Nothing None Satire (making fun of the song for being obvious?) 137 Group discussion (led by HCP Franca, consisting of half of? Rest of the group at the? Satire Satire? Clownish

138 Someone in the group tells about an old book she has. Someone says: from 1936?! While the conversation continues mr. G says: 1900, oh no, 1600! Jan compliments mr. G on his smartness mr G. responds: yes I m so smart, that is why I m here isn t it Verbal the book Lunchtime Mr. G Verbal Himself (mr. G)? Mr. G Someone sings: zo blij, zo blij, dat mn neus van voren zit en niet opzij. Mrs. C: no off course not because that is where your ears are Verbal The song Group conversation Mrs. C the subject is the municipality Goirle. Someone suggest that that is part of the bigger municipality of Tilburg with which part of the group disagrees. One lady reacts quite fierce: "oh nono! It is Verbal not! Im sure it is an independent municipality"two ladies act slightly ARROGANT (als twee bekakte dames) saying ohoo, oh no, Goirle part of Tilburg. The lady who reacted fierce Group discussion (led by HCP Franca, consisting of half of? the group, all woman) Mrs. C : my daughter tells me I can not go to Carnaval but I go anyway. Hahaha Verbal Herself/her daughter Group discussion (led by HCP Mrs. C Franca) When talking about carnaval someone mentions: I don t like drunken people, hahaha Verbal Group discussion? In the group conversation it is about being an organ donor. Mrs. D: I always thought like oh my they will not take Verbal Group discussion Mrs. D something that I might still need, will they? Hahah Looking through the headlines of the newspaper there is a headline: Dr Joris which is read out loud by HCP Franca. Someone adds: krijgt de porus Verbal Group discussion HCP reads a line from the newspaper about Carnaval: as oewe pony maar goed zit and shows a photo of two girls combing their hair which looks like the hair of a horse (a wordplay on the meaning of the word pony as in horse and pony as in a hairstyle) Combination Group discussion Nespaper/HCP Franca Mrs. T has forgotten to change her slippers (pantoffels) for shoes when she left home this morning. HCP Jan refers to this when playing a quiz-like game and a question about shoes is pulled from the deck Combination (verbal reference to phycical situation) Mrs. T Game (cards with questions in different categories) HCP Jan 138 HCP Jan comes in to ask for the newspaper. HCP Franca says: hah you are not getting it HCP Responds: oh Verbal HCP Franca Group conversation HCP Jan my I don t get how you guys can tolerate her` Mrs. N tells about a café she went to that was called Mozes: VOL ask: Verbal Mozes and the rush-bottomed basket, The cafe from the conversation Lunchtime Volunteer or not?

139 unchtime Mr. G no-one in particular Some people snigger about the first guess, then no further response to mr. G None Parody Mr. G HCP Jan Both laugh None Irony (sarcasm) roup conversation Mrs. C no-one in particular Nothing None Satire (making fun of the song for being obvious?) roup discussion (led by HCP ranca, consisting of half of? he group, all woman) Rest of the group at the table? Satire Satire? Clownish roup discussion (led by HCP Mrs. C ranca) Rest of the group, HCP Franca in particular roup discussion? Rest of the group HCP asks why her daugther doesn't want her to go (no humour response) Only the initiator is laughing possibly notlaughing as a humour experience but making up for a possibly unpopular or unshared opinion Mrs C might feel a bit superior? Maybe looking for confirmation roup discussion Mrs. D Rest of the group Group laughs a bit Parody roup discussion No one responds roup discussion Nespaper/HCP Franca Visitors Nobody responds Amusement/cognitive challege for visitors Surprise ame (cards with questions different categories) HCP Jan Rest of the group, mrs. T in particular A few people laugh Satire roup conversation HCP Jan HCP Frankca People laugh; two ladies stand up for Franca (well, she is really nice!) Entertainment? Satire 139 unchtime Volunteer Group, mrs. N in particular No response None Misinterpretation

140 the meaning of the word pony as in horse and pony as in a hairstyle) Mrs. T has forgotten to change her slippers (pantoffels) for shoes when she left home this morning. HCP Jan refers to this when playing a quiz-like game and a question about shoes is pulled from the deck Combination (verbal reference to phycical situation) Mrs. T Game (cards with questions in different categories) HCP Jan HCP Jan comes in to ask for the newspaper. HCP Franca says: hah you are not getting it HCP Responds: oh Verbal HCP Franca Group conversation HCP Jan my I don t get how you guys can tolerate her` Mrs. N tells about a café she went to that was called Mozes: VOL ask: Verbal Mozes and the rush-bottomed basket, The cafe from the conversation Lunchtime Volunteer or not? Mr. G when someone mentions something about the door he makes a (non-existing) riddle out of it: die deur dikke deur (that door, fat door) Verbal Moving from one room to the other for group conversation mr. G During the creative activity of stonecarving in the afternoon Mrs T and mrs. B continue singing songs and HCP Jan corrects them again and says: Pcombination: verbal expression of If you will not listen I will throw the physical action stone at you with a heavy accent (adde nah nie lestert dan gooinik meej unne kaai) Mrs. T/mrs. B Stone carving HCP Jan When starting the game mrs. T mentions that she has to go to the Combination: verbal expression of toilet. HCP Jan replies: well you might physical action as well just do it here, that is why I put Mrs. T Playing a quiz game HCP Jan leather on the couch Mrs. J enters the room where the game is played and HCP Jan says very loudly: there we have our first Verbal Mrs. J Playing a quiz game HCP Jan candidate, JO To the introduction of JO by HCP Jan mrs. G rhymes according to an existing Verbal song: Jo met de banjooo (Jo with the Mrs. J Playing a quiz game Mrs. G Banjo) 140

141 me (cards with questions ifferent categories) HCP Jan Rest of the group, mrs. T in particular A few people laugh Satire up conversation HCP Jan HCP Frankca People laugh; two ladies stand up for Franca (well, she is really nice!) Entertainment? Satire chtime Volunteer Group, mrs. N in particular No response None Misinterpretation ving from one room to other for group versation mr. G no-one in particular None None ne carving HCP Jan mrs T/mrs B They both laugh and respond with a joke like "then Ill throw it back at you" They stop singing Slapstick ying a quiz game HCP Jan Mrs. T and the rest of the group (half of the group) All visitors laugh Incongruity surprise/parody ying a quiz game HCP Jan Mrs. J and the rest of the group Especially Jo laughs Jo is involved in the game Surprise ying a quiz game Mrs. G no-one in particular No response 141

142 Appendix B. Sensitization materials of the contextmapping study Word stickers Fantastisch Grappig Liefdevol Vermoeid Samen Vervelend Verrassend Luisteren Bewegen Vertrouwd Steun Beperkt Dromen Anders Belangrijk Spanning Groeien Onduidelijk Delen Eenzaam Sociaal Kinderlijk Vreemd Verdriet Geduldig Oneerlijk Verbazing Mooi Familie 142

143 Sensitization booklet Werkboekje Humor binnen de zorgrelatie 143

144 Mijn contactgegevens: Telefoon: Dit ben ik 144

145 Introductie. Beste deelnemer, Dit werkboekje is het eerste onderdeel van het onderzoek Humor in de zorgrelatie. Voor het tweede deel vind u een uitnodiging in de envelop. In dit werkboekje vind u 5 verschillende vragen. Het is de bedoeling dat u iedere vraag op een andere dag invult. Het invullen van 1 vraag kost ongeveer 5 minuten, maar u mag er natuurlijk altijd meer tijd voor nemen. U mag invullen wat u zelf wil, er zijn geen goede of foute antwoorden! Bij dit werkboekje heeft u een aantal materialen gekregen zoals stiften en stickers welke u kunt gebruiken bij het invullen. Het is natuurlijk ook prima om uw eigen materialen te gebruiken. Tot slot wil ik u veel plezier wensen met het invullen. Mocht u nog vragen hebben aarzel dan niet om contact met mij op te nemen! 145

146 Hij/zij houdt van: Maar niet zo van: En samen doen wij graag,,, En dit is:... Ook diegene voor wie u zorgt is natuurlijk belangrijk. Wie is hij/zij, wat vind hij/zij leuk om te doen? Voor wie zorgt u als mantelzorger? 146

147 Dag 1 En wie bent u? wij graag,,, Hier kunt u iets over uzelf vertellen. U kunt uzelf tekenen, of een leuke foto inplakken. Wat doet u graag, waar wordt u nou echt blij van? Ik hou van: Maar niet zo van: Ik heet:

148 Voorbeeld U kunt hierbij de rode en groene stickertjes gebruiken om aan te geven wat u leuke momenten vindt, en wat u minder leuke momenten vindt 148

149 Dag 2 Een dag uit mijn leven Bij deze opdracht is het de bedoeling dat u laat zien hoe een dag uit uw leven als mantelzorger eruit ziet. Ook voor de dingen die niets met zorgen voor uw naaste te maken hebben mogen een plekje krijgen op deze tijdlijn. 149

150 Ik moet vaak om hem/haar lachen omdat:... Bijvoorbeeld: mijn zus, omdat ze heel droge humor heeft en die vaak op het perfecte moment inzet Deze bekende of onbekende persoon maakt mij aan het lachen Om dit tv-programma moet ik vaak hard lachen Wat er zo grappig aan is: Bijvoorbeeld: t Schaep met de vijf poten; omdat ik het Amsterdamse accent erg grappig vind

151 Dag 3 Zo hard gelachen! Waar heeft u onlangs hard om moeten lachen? Plak en/of beschrijf het hier. Wat was een grappige situatie, wat vindt u een lachwekkend tv programma en welke (bekende of onbekende) persoon maakt u aan het lachen? Een grappige situatie die ik onlangs meemaakte was: Bijvoorbeeld: ik kreeg een boete voor het fietsen zonder licht, maar toen ik uit boosheid een trap tegen mijn fiets gaf ging het licht spontaan weer werken 151

152 Bijvoorbeeld: als ik wel eens chagrijnig ben dan doet mijn vrouw mij na met een gek stemmetje, dat maakt mij aan het lachen en zorgt dat ik weer wat vrolijker ben Waarmee kan degene voor wie u zorgt u mee aan het lachen maken? 152

153 Dag 4 De functie van humor Mantelzorger zijn van iemand met dementie is niet altijd gemakkelijk. Soms maakt u misschien wel eens een grapje om een vervelende situatie wat gemakkelijker te maken. Hoe pakt u dit dan aan? Kunt u een voorbeelden noemen? Hoe ik het aanpak: Bijvoorbeeld: Bijvoorbeeld: Als ik en mijn man het oneens zijn krijgen we vaak een discussie. Om dit te voorkomen maak ik dan een grapje; Bijvoorbeeld laatst toen hij zijn bril weerhad kwijt gemaakt en zei dat ik dat had gedaan; Toen zei ik voor de grap: Ja Jan, ik wil dat we een beetje in beweging blijven! 153

154 Humor in beeld: U kunt hier de belevenis van humor voor u uitdrukken in beeld. U kunt hier plaatjes plakken, tekenen, schilderen, wat voor u werkt 154

155 Dag 5 Lachen is gezond! U kent het gezegde vast wel: Lachen is gezond! Veel onderzoeken hebben uitgewezen dat lachen een positief effect heeft op lichaam en geest. Wat is voor u persoonlijk het effect van eens goed lachen? Kunt u dat proberen te beschrijven in woord en beeld? Een keer goed lachen is voor mij

156 156 Wilt u nog iets opschrijven maar paste het niet op de overige pagina s, dan kan dat hierboven. Als u alles al verteld heeft wat u wilde vertellen mag u deze pagina leeglaten.

157 Klaar! U heeft nu alle vragen gemaakt en het werkboekje is klaar. Mocht u in de dagen voor de sessie nog dingen bedenken of op willen schrijven, doe dit dan vooral! 157

158 158 Appendix C Collage materials of contextmapping study

159 159

160 Appendix D. Transcription of the generative session 160 1:40 Ja ik vond dat laatste van het werkboekje wel moeilijk Nou ik vond het goed opgezet wat een gezellige ruimte zeg ja echt 4:20 toevallig is het heel hectisch en ja we hebben ook een sterfgeval; dus dat is ook hectisch erbij dus ik hoefde niet zo te lachen van de week. 64, maarja Anders lachen we iedere dag. We hebben gisteren nog wel gelachen, alleen niet zo uitbundig 6:11 we zijn enthousiast en vrolijk begonnen [met het boekje invullen], maar toen, dit ook nog, maar toen ging het eventjes.. Het versieren is niet meer zo gelukt [i.v.m. het sterfgeval]. 6:52 verhaal mevrouw 1 over kleinzoon waarbij de halve klas kwam slapen en iemand zo dronken was dat ze hem op de WC hadden opgesloten (deur van buitenaf op slot) en dan vertel ik dat tegen (naam man) en dan zegt hij, ochooo wat heb ik toch een kleinzoon, dattie da kan bedenken 9:09 Wij gingen zondag wandelen, met mijn dochter en mn man en dan is hij net buiten en zegtie: waar staat de auto. Dan zeg ik nee we gaan wandelen; en dan doet hij zn bril omhoog en wijst hij op zn gezicht: kijk eens hier, ik krijg helemaal tranen En dan zeg ik: hier krijg je mijn zonnebril. Dan zegt hij: Ja dat doe ik niet, voor schut hij weer endnje verder gelopen en zeg: Tis koud, ik heb het koud, hebben jullie het niet koud? ja we hebben toch een jas aan? en hij: ohw, ik ook?; ja, ik heb ook een jas aan We lagen helemaal in een deuk want hij was iedere keer iets anders aan het verzinnen. Toen gingen we terug en zei die: nou gaan we met de auto Nee zegt Patries, die is thuis. Heel de tijd zegt hij kijk eens hier [wijzend naar ogen] en dan zeg ik ja dat heb ik ook hoor kijk maar eens hier. De hele tijd moppert hij want hij kan niet zo goed meer lopen dan lachen wij erom, en dan lacht hij ook weer gewoon. Een eindje verder begint hij weer te mopperen Met naar de wc gaan moeten wij hem ook helpen en dan zegt hij vaak : wat ben je toch goed voor me Ik

161 zeg ik wel ja want als ik jou kwijt raak voor wie moet ik dan zorgen. En dan zegt hij ja dat is waar, voor wie moet je dan zorgen. 10:24 Ja nouja mijn man kan dus helemaal niet praten, Ochja, das wel moeilijk hè ja dat is wel moeilijk En als ik deze verhalen hoor dan is het wel een stuk moeilijker maar toch probeer ik het goede erin te zien en daarmee verder te gaan. Vanmorgen ging hij de krant halen Dat is dan een gewoonte, weet je wel, maar nou was hij voor 14 dagen terug zaterdags een goede middag toen was hij gevallen ik was boodschappen doen en ik kwam aangefietst en toen lag hij op de grond ik denk hij is in de tuin hij werkt nog in de tuin op de knieën ik denk hij is onkruid aan het plukken maar dat was dus niet zo hij was gevallen. Hij kon zichzelf niet omhoog. Toen heb ik hem omhoog gekregen en toen van mij mocht hij niet meer en toen zei ik je moet je niet meer vooruit gaan meer ja die stoep is een beetje onregelmatig weet je niet en ik zeg je kunt beter achter uit gaan [ door de achterdeur] daar is alles gelijkvloers maar uit gewoonte, toch, uit gewoonte toch ja ik had de sleutel al achter neergelegd maar hij had geen sleutel en hij moet een sleutel hebben voor inde tuin te kunnen maar toch gewoon die loop ja dat is hij gewebd. Maar toen ben ik wel kwaad tegen hem geworden en ik zeg dat moet je niet meer doen dat hebben we toch goed afgesproken en hij zegt ja en jij dan? (grinnik) Ja en ik ben nog gezond en ben maar blij da tik nog gezond ben dan kan ik jou nog helpen en anders dan beland je in een verzorgingstehuis,. Ja wat moet je ervan maken? Ja en toen hij gevallen was toen heb ik hem geholpen met opstaan en alles en toen zei ik tegen hem: wou jij net als de paus de grond kussen? maar hij kon lachen. Ja ik wil maar zeggen, achteraf dacht ik ja, het is maar hoe je, hij kon lachen dat vind ik het belangrijkst. Ik: en begrijpt hij dan uw grapje of lacht hij met u mee? Ja nee hij lachte en sowieso doe ik kijk omdat hij niet kan praten Ja dat is moeilijk Als ik dan zie dat hij lacht is dat voor mij voldoende Mijn man kan ook slecht praten maar ik ebdoel je voelt aan wat hij bedoelt toch? Ja maar je kunt er niks van maken Maar met lachen kan hij zich uitdrukken, met lachen wel. Maar iets vertellen en uitleggen, dat is moeilijk dan toch 161

162 Hij begrijpt volgens mij helemaal niks meer. Ook van hieruit als de ergotherapeut er is en tegen hem rpaat zegt hij wel ja, maar al sik er daarna naar vraag dan weet hij niks meer, volgens mij gaat het allemaal langs af Dan maak ik er een grapje over om het niet zo ernstig over te laten komen. Maar daarna realiseer je je wel maar nou kan ik niet meer van huis en dan ga je toch van ja het eerste wat ik gedaan heb is niet meer door de voordeur maar achterom omdat het daar een glad pad is en ik heb het ook hier aan de fysiotherapeut voorgelegd. Want zij was al een keer bij ons geweest om dat mijn man nog in de tuin werkt om te leren hoe je moest opstaan. Maar ik heb aan haar kenbaar gemaakt en nou komt ze nog een keer. Ja ik vind de Hazelaar, bij ons bij de fystiotherapeut was hij uitbehandelt en hier wat ze lalemaal nog ermee klaarkrijgen >Eerst gebruikte hij nog een wandelstok en nu ook niet maar. 162 Enfin ik probeer overal het goede uit te halen en daar iets mee doen. Ik gebruik de humor zoveel als ik maar kan. Wat ik normaal niet zou doen dat is eigenlijk het enige wat hij nog heeft, of wat wij samen nog hebben. praten kunnen we niet meer maar lachen kunnen we samen nog wel. Maar iets vertellen dat lukt niet. Ik: ja humor is echt iets in het moment, dat heoft niet persee terug te gaan in het verleden Ja dat realiseer ik me eigenlijk nou pas heel goed terwijl ik het zeg begint hij te lachen. Terwijl als de ergotherapeut tegen hem praat dan is hij daarna alles kwijt. Maar dat lachen wel. Wij lachen eigenlijk iedere dag, al is het maar een glimlach. Je moet er zelf ook iets van maken. Hetzelfde als die mevrouw vertelt. Mijn man was ook gevallen had hij de fiets uit het schuurtje gehaald maar de band was kapot daar was ik blij mee maar nou heeft toch ik zeg hoe kan dat nou hij had twee harde banden. Heeft hij toch weer gefietst! Had hij gefietst, ja bij ons op de plaats we hebben een grote plaats. Ik zeg ben je gevallen, jognen dat moet je niet doen dat weet je toch. Hijz egt ik ben niet gevallen! Even daarna zijn broekspijp omhoog, heel zn knie open en zn rug zeer maarja, dan meot ik eerst ook even mopperen, dat moet even. Ja van de schrik dikwijls he Ik zeg ik ga hem weggeven de fiets Ik heb de fiets ook weggegeven zodat hij hem ook niet meer ziet. Of op slot zetten die fiets. Maar dan ben je zelf weer ergens mee bezig zijn ook en dan vind ik ook wel ze doen dingen als je zelf even bijvoorbeeld aan de telefoon bent ofzo Ja het zijn net kinderen die je de hele dag om je heen hebt. Zo zeg ik het ook gewoon Ja en dat is erg hoor want dan denk ik ook ja kan ik nou nooit net als u meer weg, kan ik hem niet alleen

163 laten want dan gaan ze dingetjes doen Ja alsof ze denken nou heb ik de kans Ja zo denk ik ook Ja Ja Als ik zelf binnen ben en toch een beetje bezig ben dan zit hij TV te kijekn en moet ik hem zelf activeren van kom we gaan dit doen of dat doen maar uti zichzelf komt er nisk uit maar al shij dan eigenlijk alleen is als ik even weg ben Dan gaan ze even uitproberen Ja mijn man die heeft altijd hard gewerkt ja nou oh En dan denk ik ook van hoe moet je, moet je hem nou alles ontnemen, amg hij nou eigenlijk niks meer, dat is ook niet nodig. Ja en in de tuin kan hij nog wel vallen. Hij is ook een keer gevallen toen hij ging wandelen. Toen begon hij gewoon te wandelen maar dat is met Parkinson dan begin je te wandelen maar je begin al langer hoe harder te rennen geen controle ja toen is hij gevallen. En in het ziekenhuis beland. Ja even een boodschap dat meot gewoon, dan kun je niet even iemand extera voor Als hij thuis is kan ik geen boodschap doen ik durf hem niet alleen laten Ja ik ook niet meer. Nou heb ik een alarm in huis dat hebben de kinderen toen geregeld. Ik heb drie dochters maar die wonen allemaal ver weg dus bedoel, ik kan niemand even bellen van kun je even komen. En die [dochters] toen hebben die gemaakt dat ik zon alarm kreeg van Thebe [zorginstelling] en dan hoef ik maar op de knop te drukken en dan komen ze al. En die geef ik hem dan want hij gaat dan als hij s middags gegeten heeft eventjes op een stoel liggen. Ik zeg: dan loop ik gauw eventjes naar Albert Heijn en ben zo terug. Maarja, of hij nou ergens van geschrokken is of wat dan ook, hij is opgestaan, pakt zijn rollator en wat hij gedaan heeft dat weet ik niet, en midden in de kamer is hij gevallen. Maar, hij kan niet meer omhoog. En ik kom binnen en ik doe de deur open, en hij roept al: Annemie!. Ik denk: wat krijgen we nou? Ik zeg: jah ik heb er geen motor aanzitten {gegrinnik uit de groep} En daar ligt hij, midden op de vloer. En nou had hij dat alarm op de tafel liggen, dat heeft hij niet om zijn nek hangen, nee, op tafel dus hij kan ook geen hulp roepen. En dan zo n blok omhoog krijgen. Ik: Ja ik wilde net zeggen: u bent allemaal dames en ik neem aan dat de mannen toch niet zomaar optillen. Eerst ging ik ervoor staan ik zeg als je nou je voeten [tegen mijn voeten] dan trek ik je zo omhoog. Toen heb ik hem bij zijn broekriem gepakt en denk ga op je knieën zitten, probeer je knien er eens onder te krijgen. Dat is gelukt. Maar als hij in de badkamer valt en hij is niet gekleed dan krijg ik hem niet omhoog. Maar ik 163

164 164 heb het dus in jaren pas 1 keer hoeven gebruiken maar, echt Ik: ja dat is wel mooi dat u zo n alarm kan hebben. Ik: introductie collage s maken Ojee Ik: vindt u het moeilijk? Ja ik zit dan te kijken van wat moét ik daar nu mee? Ik: het hoeft niet mooi te zijn [ ] [mevrouw kijkt vast naar afbeeldingen] ah u bent nieuwsgierig he? 23:58 Leergierig Onze buurman die kwam vanmiddag thuis en toen was net de kapster er en die zit ook altijd met hem te gijnen. En toen zei hij: kijk eens hier dit is mijn nieuwe vriendin, niet tegen ons ma en Jan zeggen hoor [ ] En dan paktie [..] en dan heeft hij lol. Ja kijk zulke dingen; Ja dat is mooi Dat vind ik ook Die is er altijd mee bezig; En dat is leuk van als ook leuk van als je een beetje in dezelfde wijk blijft, de mensen kennen je ook bij ons in het dorp wel en in de winkel. Ik: [over de felgekleurde scharen] ik heb de scharen van mijn nichtjes meegenomen dus Oho, zij heeft een roze Ja dit is het voorjaar. Ja anders hadden jullie ruzie gemaakt Ik: uitleg over collage blablabla Ik begin met de televisie Ja ik ook Ja zie je, Ik geef niks om de TV maar mijn man gelukkig wel. Daar kan ik hem goed zoet mee te krijgen. Ik kan hem niet zoet krijgen hij ziet alles verkeerd, hij zit alles verkeerd te beoordelen dan zegt hij: oh dat is dat neeh dat is dat oho mooi he zegt hij dan. Hij snapt er niks van maar, oho dat vind hij dan zo mooi. Mijn man, motorcross. Heel de dag die zender van motors. {zucht} Je wordt er niet goed van Ik: en de televisie lacht u daar dan samen om, lacht uw man daar om?

165 Nee samen doen we daar wel om lachen als er iets komt dan zegt hij wat is dat dan en dan zeg ik zo dat is een geintje en dan draai ik dat om, anders dan eigenlijk op televisie voorkomt en dan zegt hij: dat is leuk he? Dat is echt leuk Dan snapt hij het niet maar dat is echt leuk zegt hij dan. En ik merk hij zit televisie te kijken maar hij ziet het niet echt eens. Dan gaat het toch te vlug En dan kunnen ze het niet volgen Dan kunnen ze het gewoon niet volgen. En dan met een reclame dan begin ik ineens te lachen en dan zegt hij waarom lach jij nou en dan zeg ik heb je dat niet gezien dan? nee? zegt hij dan en dagen daarna is er dezelfde reclame en dan zegt hij nou heb ik het gezien, dat is leuk. Ik: ja dat is het voordeel van reclames he die komen terug Ja, ja, die komen terug Ja die komen terug Ik heb een hekel aan de TV maar hij is er goed zoet mee. Het is een goed slaapmiddel ook Ik: waarom heeft u dan zelf een hekel aan de TV? Nou, ik. Ik doe even leiver. Ja dan kan ik een beetje werken en hij is toch rust er mee uit. Maar, ik vind het toch vervelend. En als hij bij sommige mensen wel eens komt en de TV staat aan dan is het zo stil houden wan tik moet dit volgen de gezelligheid vind ik met de TV; ik doe liever een potje kaarten of een spelletje. Ik: en waarmee lacht u veel? Meer met een spelletje of kunt u ook om de televisie lachen? Nou alleen Bananasplit dan en André van Duijn, Animal crackers maar verder [ ] geef ik al niks om Bij mij moet het ook allemaal nederlands talig zijn. En hij is er ook zoet mee want al sje altijd moet lezen dan is het niet leuk meer dan is het al weg voordat hij het al gelezen heeft. Wij hebben bijna alles Nederlands talig Ja ik zet ook veel Nederlands op dat is toch beter te volgen, of de Belg en dat kan hij dan toch volgen. Dat vindt hij prachtig. Datkan hij dan niet echt volgen maar hij denkt, hij weet, hij denkt dat hij dat kan volgen, ja zo Ik vind die Belze series toch ook altijd leuk om de taal. Ja hij is ook van Belze afkomst dus zijn moeder is Bels dus we zijn veel in België geweest en dat vind hij dan al helemaal leuk dat dat Belgisch is zo van m n moeder kan dat ook en dan is hij zo trots [?] Ja en ik heb dan die dochter die in België woont, en 1 in Leiden met de rrrrrrrrr [Leidse R] En in Maasbommel dus ik heb ze verspreid zitten. Ik: ja dat is een stukje weg Ja dan hoef ik niet even te bellen van kun je komen helpen; dat gaat echt niet. 165

166 166 Wij hebben een DVD van Snip en Snap, van vroeger Ahhhh Die zet ik dan ook geregeld op en dat vind hij ook zo leuk dan zegt hij: dat waren nou zulke goede artiesten! Dat is dan toch zo leuk dan zit hij ook te lachen, dat kunnen ze dan toch net iets volgen want die zijn ook oud, en het zijn oude stukjes dus ja, dat vind hij echt helemaal geweldig. Ik: herkent hij dat dan ook? Ja dat herkent hij. Snip en Snap van vroeger, die waren echt van vroeger. Ik: dus omdat het echt van heel lang geleden is? Ik heb daar nog cassettebandjes van Ja dat is echt van heel lang geleden. Dat begr. Ik heb daar nog casettebandjes van. Als ik vroeger stond te strijken, daar had ik een hekel aan, dan had ik die bandjes aan en kon ik ze allemaal nazeggen. Ahhh leuk he? Ja Ja dat vind ik ook leuk, maar u kent ze niet he? Ik: nee die ken ik niet maar ik ga het zeker opzoeken natuurlijk Want snip snapt niet wat snap snapt Ik: en snap snapt niet wat snip wel snap; ja ik herken het wel inderdaad. Als snip en snap. Ja ik weet het verder ook niet meer. Maar ik vind het wel leuk. Willy Walden en Piet Muijselaar. Ja. Ik draaide in de fabriek een boutje aaneen nippeltje van een transistortje toen ging de [ ] En hoeps Boem Daar lag ik. En dan begin je al te lachen, want dan zie je dat al voor je he. Ja das het zelfde als met Andre van Duijn, die gezichtsuitdrukking! Dat hadden Snip en Snap ook, die kleine, als hij dan zo keek. Hahahaha Echt wel Godsamme toch dat was toen leuk. Maar nou moet het allemaal maar met seks en weet ik allemaal zijn Daar houdt u niet van? En uw man? Die houdt daar ook niet van

167 Ik had opgeschreven Banasplit maar afgelopen zaterdag had hij er niet zo om gelachen Toen was ik daarmee bezig Toen was het ook niet zo leuk Onze Nick snapte het eigenlijk niet. Ja over die auto platgooien. Ik heb de clou niet gezien, die manen dat die zo schrokken> Dat doe je toch niet zo n auto platgooien. Maar goed wij zitten wel te knippen maar misschien moeten we iets anders doen, Eentje heb ik vastgeplakt,da t is het middelpunt. De televisie, voor mijn man. Ik: en ook qua humor? Dat u zegt om de televisie lachen we het meest? Ja, nou mijn man misschien wel. Zijn dit pillen of snoepjes? Ik: wat u wil? Snoepjes was ik ook aan het zoeken, ik zie pillen. Ja pillen moet je wel gebruiken, dat zijn vitamientjes, voor ons dan kun je blijven lachen. Ik: pillen, of snoepjes? Nou pillen, vitamines. De lach is toch vitamine voor ons? Fruit is ook vitamines. Ik heb altijd een schaal fruit en dan heb ik net gegeten en dan komt hij binnen: lust jij ook een banaantje ik zeg: nee heb jij er nou eentje gepakt? ja, dat vind ik lekker! joah, hé, je hebt net gegeten! ja maar dat is lekker, dat mag ik toch wel?; jij ook? Hij wil dan dat ik er ook één neem dan valt het niet zo op dat hijeh. Ik: speelt u nog wel eens spellen? Kaartspellen, bordspellen Nee! Deed u dat vroeger wel? Nee hij heeft er nooit veel om gegeven Nee ik ook niet maar ik deed het altijd wel. Mar hij snapt er niet veel meer van Ik: wat speelde u vroeger veel dan Rikken [Brabants kaartspel] Maar nou doet hij zodra hij gaat zitten pakt hij zijn puzzelboek met woordzoekers Ja dat doet mijn man de hele dag; hij doet anders niks Kan hij dat nog wel? 167

168 Of hij het goed doet dat weet ik niet. Hij doet die puzzel sochtends aan tafel als hij dan uit bed komt Ja gaat hij hem pakken. Ja Het moet ook allemaal op dezelde plaats liggen he? Ja dan zeg ik dat kun je daar toch laten liggen en dan zegt hij: nee annemie dat heb jij helemaal verkeerd gezien; dat kan niet! 2:44 En douchen, daar kunnen we ook altijd mee lachen. Als hij in de douche staat dan moe tik hem altijd insoppen en dan spuit ik hem echt op zn kop: Deronder met die kop en dan zegt hij: dat wil ik niet dat wil ik niet dan douw ik hem helemaal terug den dan zegt hij doe nou niet {lacht} Wij hebben zo n lol met elkaar ik zeg: dat is echt leuk als jij onder de douche moet Hoe hebt u dat klaargekregen dat u hem helpt met doucen? Gewoon, hij laat het gewoon toe. Ohw. Dat is, hij heeft het gewoon toegelaten, van het begin af aan. Ja mijn man kan nog wel zelf erin stappen maar dan komt hij eruit en dan moet wel helpen met afdrogen, dat kan hij niet. Douchen dat kan vanwege dat hij zich aan twee kanten vast kan houden want anders was dat ook een probleem maar dat wil hij eigenlijk allemaal nog wel zelf doen. Ik: u zegt wij lachen heel veel tijdens het douchen, maar voor u [andere mevrouw] is dat heel moeilijk want u zegt: hoe hebt u hem zover gekregen. Hij wil dat niet? Nee, hij heeft dat altijd zelf gedaan dan heeft hij geen anderen nodig. Jaa, maar dat hebben jullie ook, hij moet steeds inleveren. Jaa, ja, maar hij staat ook onder de douche en dan geef ik hem een spons en dan zeg ik nou je moet je eigen wassen. Ja wat moet ik dan wassen? Nou, hierboven beginnen en dan zo naar beneden En dan heeftie dit [wijst naar schouders] en ik zeg: armen omhoog en dan zo wassen en dan zegt hij het is klaar he? en dan gaat hij de tegels doen. Ik zeg: nee, je moet ook je voeten, en je benen nog gdoen en dat doet hij dan weer wel. Is het zo goed? Ik: Dus u helpt hem, u vertelt het hem, maar hij doet in principe het douchen zelf? Ja, ja Maar afdrogen kan hij dan niet; als ik zeg de voeten afdrogen dan staat hij: jaa? Jaa.. waar zitten die {haalt schouders op} Dat weet hij dan niet dat is moeilijk hee. Dan doe ik ja dit moet je doen en daar moet je doen en daar zitten je voeten en dan droog ik zijn rug af, en dan goed hard op zijn rug. En dat vindt 168

169 hij helemaal niet leuk. je doet altijd zo hard zegt hij dan maarja, dat moet, dat moet je hard doen anders wordt het niet schoon. Ik: maar voor uw man is dat moeilijker, die wil dat niet accepteren? En aankleden, doet hij dat ook zelf dan? Ja, jaha. Ohw dat doet die van ons ook niet zelf. Als hij een broek aanschiet schiet hij die achterstevoren aan, f zijn trui. Dat weet hij niet hoe hij dan dan zittie allemaal, te draaien en te vroeten. Nee dat wil hij gewoon, ja allemaal Zelf Ja, zelf doen. Moet ik alweer inleveren. Ja dat wel, maar hij laat dat gewoon toe. Net als mee naar de wc gaan; dat doen ze nou hier ook want eerst wou hij dat ook niet, maarja hij vergeet de hele tijd zijn onderbroek naar beneden te doen, dus ik zeg, zorg maar. En toen zei ze [ verzorgende]: nou we gaan hem gewoon helpen en nou zegt hij als hij naar de wc moet al tegen de leidsters van: moet naar de wc en dan weten ze dat wel, dan gaan ze gewoon mee, en dat laat hij allemaal gewoon doen. Dus dat vind ik wel prettig, dat is wel fijn. Wat er bij ons op die toilet gebeurt dat weet ik niet; ik kan daar niet achterkomen. Wij hebben boven ook een toilet, ook met een trechter want hij heeft dan voortaan een trechter nodig en dat mag ik allemaal niet weten maarja, die trechter ligt daar dus die gebruikt hij ergens voor. Maar die hebben we beneden ook ligeen maar hij gaat otch benden naar het toilet, s nachts niet dan gaat hij wel boven, maar dan is hij zo lang bezig, en hij gaat er zo vaak naartoe. En, ik kan er niet achterkomen. Ik heb het hier wel gezegd en ze douden het in de gaten houden. Ik: maar hij laat zich niet ondersteuen Nee, helemaal niks Ik: en heeft u daar wel eens geprobeerd om daar een grapje over te maken, probeert u het wel eens met humor op te lossen? Ja, ik zeg wel eens, goh daar op het toilet is het goed toeven.. Daar heb je het schijnbaar goed naar de zin, maar dan krijg ik niks terug. Doet hij de deur op slot of toch niet? Ik zou zeggen, ik ga dan gewoon kijken, die van ons laat dat gewoon toe en dan ga ik gewoon kijken van ben je klaar of ben je nog niet klaar, moet ik helpen Ik vind dat gevaarlijk; ik vind dat een beetje eigen ik, voor mijn man dan, weet je niet. Ik vind dat heel 169

170 170 moeilijk, pijnlijk. Ik: u wil hem dat niet afnemen eigenlijk Dat is toch een soort schaamte Ja daarom, ik zeg al mijn man laat het op een gegeven moment to een dan kan het gewoon Maar ik denk wel eens: mijn man is nog te goed, ook met ergens naartoe gaan. Ja dat is ook een heel verhaal. Ik ben tig jaar bezig geweest met vervoer. En daar hadden ze, wij rkegen, of krijgen dan, begeleiding van een dementieconsulente Ja wij ook Enne, ik eh ja ik zei dan, vervoer, want ja op een gegeven moemtn kan hij niet meer in een gewone auto. Dus moeten we een auto voor rolstoelen enz; enfin, formulier aangevraagd en alles ent oen zei de dementieconsulent tegen mij zei [..] want dat moest goed onderbouwt zijn anders krijg ik geen vergoeding of niks. Nou ik zal het verhaal kort maken, het is twee keer afgewezen. Ik was echt ten einde raad, ik wist niet waar ik het zoeken moest. En ja je kunt met niemand; je kunt met hem al helemaal niet doorpraten of niks of wat of hoe. Niks, niks, niks. Dacht ik ga naar het loket-z [zorgloket] nou binnen anderhalve week had ik dus toestemming voor regiotaxi. En toen twee en halve week later voor Valys. Maar nou kotm het mooie verhaal. Ik heb er toch ontzettend veel moeten knokken; en toen waren we ene keer deeerste keer toen gingen we naar zn brower toen reed ik zelf nog naar st michelsgestel dat kon ik nog wel, en hij ook. Toen rkeeg ik hem niet meer me, als na heel lange.. Enfin, eindelijk ging hij mee maar nou gingen we voor de eerste keer voor een paar weken terug met Valys en ik kreeg hem niet mee Ik kreeg hem niet mee, ik kreeg hem niet mee. Enfin. Buiten stond de taxi te wachten. Hij wilde niet. Hij was wat boven dus ik ging naar boven. Ik zeg Pieter, je moet komen want de taxi is er en hij had al 1 schoen gestrikt en de andere was hij mee bezig. Ik denk och, hij is bijnaklaar. En toen had hij die schoenen gestrikt en alles en toen ging hij constant zoeken. Ik zeg wat ben je aan het zoeken. ja mn vest ik zeg dat veswt heb je toch aan. Ik zat ook op hete kolen weetje niet. Enfin en toen pakte ik hem bij de arm en toen werdtie dus kwaad en alles. Uiteindelijk kreeg ik hem dan mee, na een half uur. Ik dacht ja, hoe kan dat nou want ik dacht ja aan de taxi, dat kan niet want naar de Hazelaar gaat hij ook met de taxi. Ik dacht en de vorige keer toen heb ik zelf gereden en toen had ik ook al moeite. En ik maar nadenken, en ik wist het niet. Ik wist het niet Toen een goeie keer, ik zeg: Pieter waarom heb jij daar nou zo n hekel aan om ergens naartoe te gaan En toen zei die: meneer van gisteren, of van gisteren. Die had ons al een paar keer eerder gereden, en ik kon dus van Gisteren eruit opmaken. En toen denk ik he, ik zeg: Jij hebt graag dat meneer van gisteren rijdt? Ja ik zeg ja maar meneer van gisteren is een aprticulier, die kan niet altijd; dat is gewoon, die kan niet altijd. De regiotaxi ja die kan altijd. Dus dat was dat.. Ja, maarja, ik zeg daar kan ik niks mee want dan kunnen we nog niet. En ik maar prakeseren. Toen vroeg ik het, hij had goeie zin, een goeie, ja, ik zeg Pieter nou moet

171 je me toch eens vertellen waarom jij dr zon moeite mee hebt om ja, ik zeg ja want de vorige keer kwam meneer van Gisteren, maar dat is het hem niet, want die keer daarvoor toen reed ik zelf en toen had je nog meer moeite. En, weetje wat hij toen zei, toen zei die: ik kan niet praten. En toen ben ik daar weer over aan het denken gegaan. En toen dacht ik, ja Ik had de familie al een keer gezegd van: dat ze tegen Pieter, da thij er ook was, dat dat ook iemand was die aangesproken wilde te worden. Ik zal het misschien anders gezegd hebben. Maar dat het heel fijn zou zijn als die bij het gesprek betrokken zou worden Ik: a dat is lastig mensen gaan ervan uit wanneer iemand niet terugpraat dat ze het ook niet horen of begrijpen. Maar in ieder geval ik was er ook wel een beetje pissig over. Ik zei ook tegen hun je kunt toch gewoon zeggen van: mooi weer, slecht weer, ik heb vandaag in de tuin gewerkt. Gewoon waar hij geen antwoord op hoeft te geven, geen vragen. Ja daar word ik nou ngo kwaad over, die kleuters die niet kunen praten,d aar praten ze wel tegen. Jaa Ja Ja waarom dan niet. Dus ik Ja dat is heel moeilijk voor mensen. In die dinges meegedaan, die Ik ben toen in die bus geweest voor die dementie; ja; maar toen kon je eigenlijk heel goed zien want die mensen, daar hadden ze het ook over. Er was dan een verjaardag en van ze zeggen toch nisk tegen mij Ik: ja dat zag je dan ook gebeuren, dan zag je die verjaardag [ze refereren naar into d mentia; waarin de persoon die de simulatie ondergaat meegevraagd wordt naar een verjaardag en uiteindelijk besluit niet mee te gaan omdat er niet gepraat wordt tegen hem] Ja als je dan bent ergens, [ ] dan ben ik nog dement. Wij konden daar niet naar toe en anders kon je daar wel naar toe, toen waas. Het heeft eerst hier nog gestaan, weet ik veel, daar heb ik altijd spijt van gehad. Daar bij de Hazelaar heeft hij ook gestaan, daar ben ik in geweest Ja wat was dat dan van die bus? Is dat vanuit de gemeente? Ik heb nooit niks gehoord over een bus. Maar misschien ben ik er nog niet zo lang. Ik ben van Mijn man, 2e herseninfarct gekregen en van toen Ik weet niet meer wanneer ik erin ben geweest en hoe. In ieder geval dat speelt zich dus nou maar ik gadaar niet meer moeilijk over doen. Ikd oe dat niet meer. Iedere keer als we naar een feestje moten gaan zitten sodeieteren. Hij si over de toeren, als we dr zijn dan wordt er geen kop tegen hem. Dat moet je memalen! Dat ze niks tegen jou zeggen Mijn man gaat ook stilletjes zitten, maar mijn man die lusitert dan. En die zegt niks en als ze iets zeggen dan geef thij wel eens een antwoord. Maar niet, hij zit heel stil te kijken of te luisteren. Hij zegt op een 171

172 172 verjaardag niks. Want als hij iets zegt dan zegt hij iets verkeerd. Ik: zijn ze bang iets verkeerd te zeggen Ja hij is bang iets verkeerd te zeggen, Want als ze dan alchen, weet hij niet waarom ze lachen. En hij lacht dan gewoon mee, maar weet niet waarom. Ik: dus op een verjaardag, in een grote groep lacht hij wel mee. Maar samen, kun u wel lachen. Zelf, 1-op-1 dan kan het wel. Maar met eengrote groep hoort hij mensen lachen en dan lacht hij mee,. Niet dat hij het dan begrijpt. Ik: omdat het veel emsnen zijn en vaak snel gaat Ja, ja Ja hij heeft een hoorapparaat en dat hoort dan ook niet goed. Die kotm smorgens de badkamer uit en dan zeg ik gods, je hebt je horoapparaat niet in. {voelt aan oren} nee ben je dat vergeten? Dus nou roep ik voortaan: heb je je oorbellen in? Maar mijn man komen ze iedere dag wassen vanaf 2012 en hij heeft van de eerste dag af toen met die herseninfarct is hij incontinent geworden. En vanaf het begin af aan heeft hij daar geen gene voor gehad. De familie kwam na een paar dagen en het eerste wat hij leit zien was dat broekje, hij kon niet praten. Dat ikd acht van och bert toch,d at hoef je toch niet te laten zien. Maar mijn man is helemaal. Die verpleegsters, we hebben er al 25 verschillende gehad vanaf En het gaat gewoon hartstikke goed. Heel fijn Dan zegt mijn man als ik kom wassen: Oh ben jij het? Dan zegt ik ja wie moet het dan zijn? Ja omdat hij hier natuurlijk ook geholpen wordt. Weet hij niet of ik het ben en dan zegt hij: och ben jij het, gezellig vind ik leuk hoor zegt hij dan. Ahhhh wat leuk! Ja Ik had vanmorgen die verpleegkundige nou, en die, eh. Werkster van de thuiszorg nou die, daar heb je ook veel steun aan. Die laten je ook lachen en doen en, ja, dan kun je elkaar een beetje uitspelen. Dan zeg ik: geen wonder dat jij iedere dag in de douche wil met zo n knap zustertje ofzo, dus ja, je moet er toch zelf iets van maken. Ik: dus ook met de verpleegster Medewerkster van thuiszorg. Toen die ook begon dat, en zo, toen kwam wel de verpleegkundige. Maar die komt af en to nou nog maar niet zo vaak meer. Ik: en kan u man dan ook lachen met diegene die komt verzorgen Ja dat vind ik ook fijn. Mijn man is altijd een stille geweest en kan niet goed praten maar ze begrijpen elkaar tochmeteen en dat kan ik ook. Ook al versta ik hem niet ik begrijp hem wel. Maar dat komt; ja u zult ook al

173 wel lang getrouwd zijn 50 Jaar ja 50 jaar och, ja, 49 ja Ik: dan moet ik nog haast maken Ja maar wij waren ook pas met on 24 getrouwd dus Wij met 26 Wij met 23 In bed doe ik ook altijd zo grappen maken. Dan ligt hij ondersteboven, of helemaal bloot en dan stop ik hem zo onder en dan zegt hij: wat doe je allemaal en dan zeg ik: ja dat vind ik gezellig; knuffelen met jou maar ik heb het helemaal niet koud jawel want je ligt de hele tijd te zeuren dat je het koud hebt ja jij zuert zegt hij dan. Ja dan hebben we ook altijd een hoop lol hoor. En ik vind, ja dat vind ik in bed ook, en dan ahh kom nou eens dichterbij liggen wan tik heb het zo koud zeg ik dan. En dan ja, dan schuift hij zo wel wat op. Maar dat in bed komen en dat uit bed komen Ja dat is een heel verhaal Heel moeilijk 1 Keer was hij uit bed gevallen. Maar mijn man is heel tevreden. Die zeurt niet die doet niet. Ik plak hier nou de bijbel ook want mijn man; ja ik ging wel altijd naar de ker en nog steeds maar mijn man eerst nooit he. Maar hij gign wel naar maria. Maar nu vanaf 2012 toen het kantje boord was toen, ik zeg: we leggen het in de handen van onze lieve heer en dat heeft hij ook gedaan en nou gaat hij mee naar de kerk. Dat vind ik ook zo fijn, Sommigen hebben daar niks mee maar ik vind het wel fijn dat het bij ons.. [ ] dat is heel rijk, ja. Maar de ene heeft dat wel en de andere heeft dat niet. Maar eh, ik eh. Mijn man doet iedere dag, de hele dag, [ ] heel fijn da tik voor hem zorg. Die is de hele dag dankbaar. Dat vind ik zo fijn [ ] Ze zeggen hier [hazelaar] hij moet eigenlijk een vierde dag komen. Ik zeg, dat doe ik niet. Het is zo gezellig, ja tenminste, gezellig, hij is zo dankbaar en dan zou ik hem nog eens een dag weg doen als hij niet graag wil. Maar heeft u dat nodig dan? Voor uzelf? Dat zeggen die mensen allemaal. straks houdt u het niet meer vol maar dat hou ik wel. Ja Ja dat zeg ik ook, ik zeg als het nietmeer gaat dan [ ] ja maar dan is het te laat ja dan is het te laat, nou pech gehad. Ja 173

174 174 Nou gaat hij om de andere dag dus 1 dag is hij weg en de andere dag heb ik hem voor mijn eigen. Dan kan ik doen wat ik wil en de volgende dag dan verlies je nog wel af en toe je geduld. Ja in het weekend is hij er dan twee dagen en dan op het eind van de zondag ben ik er eigenlijk wel moe van want je bent er de hele dag me ebezig. Maar dan denk ik waarom [ ] ik doe echt niet moeilijk. [ ] Ik vind dat ook wel maar soms denk ik ook wel eens, je hebt ook nog een eigen leven Dat heb je niet meer Nee dat heb je eigenlijk niet meer. De dagen dat je vrij bent dat is allemaal hoe, ja vrije dag. Maar verder kun je niet weg. Ik zit af en toe gewoon aan mijn oren want die moeten uitgespoten worden maar dan moet ik die dokter bellen en de afspraak maken Dat moet je dan op een dag dat hij niet thuis is Ja dat is ook. En dan denk ik jezus nog aan toe; en dan moet ik smorgens bellen. Als hij dan nog thuis is en dan zit hij waarom moet jij naar de dokter en zal ik met jou meegaan Ahhh nou en dan neem je hem niet mee? Ik moest gisteravond ook bij een vriendin in het ziekenhuis op bezoek Dan neem k hem wel mee Ja en dan gaat hij gewoon mee. Ik dacht eigenlijk dat hij niet mee zou gaan maar hij zei ik ga ook mee. Nou dat vond ik toch zo, ja dat vond ik heel fijn. Want vroeger moest ik overal alleen op uit. Hij was alleen maar aan het werk en met de zaak bezig. En Ik: eigenlijk iets wat u vroeger niet had dat heeft u nu wel Ja dat heb ik nu wel. Hij is nog liever geworden als vroeger. Ja dat stemt tot dankbaarheid en tot leuk. En dat gaat als een rode draad door ons leven. Kan ik er wat bij schrijven? Ik: ja als u dat wil. U mag het ook gewoon opplakken Ik ben erachter gekomen dat je er dag en nacht mee bezig bent. Dag en nacht. S Morgens smiddags,als je je ogen open doet dan begint het al Ik: vind u het soms ook wel eens moeilijk om dan humor te gebruiken Ja, dan zeg ik tegen mijn kinderen ik vind het toch wel moeilijk. Af en toe denk ik wel eens: dat hoef ik toch allemaal niet. Waarom moet ik dat hebben, waarom. Andere mensen hebben het zo gezellig en die kunnen overal nog naar toe en dat kan ik niet mer en dan denk ik af en toe: getverdemme. Dan denk ik, nu even niet.

175 Ik: en maakt uw man dan wel eens een grapje of iets geks, om u te vermaken? Nou niet echt, nee niet echt. Ik: heeft hij dat vroeger wel gedaan Nee ook niet eigenlijk. Vroeger was hij muzikat en heel veel weg. Ja. Muziek maken, altijd was hij muziek maken. Als de kinderen zeggen dan zegtie: [ ] en dan zeggen de kinderen: daar weet jij niks van want je was nooit thuis. Ahhhhh dat is een verwijt En dan zegt hij: ik was ook nooit thuis en dan zeg ik nee dat was je ook niet. Maar daar hebben we veel van kunnen doen, op vakantie. Dan heb je weer de andere kanten. Dat vind ika ja, dat dringt toch wel bij hem door als je zegt van Ja dat wel want dan zegt hij van we hebben ook fijne vakanties gehad dat blijft ook altijd bij. En van de kleinkinderen ook. Ieder jaar hadden we foto s gemaakt van alle kinderen en kleinkinderen en die oudtste is autistisch. Hadden ze allemaal gesrekken alaatst. Van we hebben ook fijen dingen meegemaakt en fijne vakanties gehad, en dan zegt hij: ja. En dan zei mijn zoon: dat was de mooiste vakantie die ik ooit heb gehad en dank denk ik dat hebben we niet voor niks gehad. Dat is iets wat de kinderen en kleinkjinderen altijd bij blijft. Dat zegt hij zelf ook wel eens: ja we zijn op vakantie geweest met die boot, weet je wel en dan zegt hij: dat was een hele grote he ja dat was een hele grote boot Maar dan verder herinneren dat kan hij niet meer. Ik: en lacht uw man nog wel veel Ja als we thuis zijn, met twee als ik een geintje met hem uit haal. Als hij in de stoel zit zit hij met zijn benen omhoog en als ik mezelf omdraai stapt hij daar zo uit zonder naar beneden te zetten. Dan zeg ik gatverdemme zometeen val je hier op je neus en dan zegt hij: kom jij mij dan oprapen ja dan kom jij mij toch helpen? en dan zeg ik: ja da doe ik zeker, ik help jou toch altijd en dan zegt hij: ja jij doet alles voor mij zo ja is hij, weet je wel. Aahhh En daarom zeg ik altijd; hij is gewoon heel leuk thuis [ ] Ik: en de kidneren en kleinkinderen Ja dat vind hij helemaal geweldig, die jongens. Daar is hij helemaal blij van als hij die ziet. Ja maar dan met een verjaardag dan hebben we ze allemaal en dan is het te druk Een zondag waren we bij mijn dochter en nou was echt op zn ouderwets gezellig. ach dat is zo leuk zegt hij dan. En dan zegt hij: gaan we naar huis en dan zeg ik vind je het te druk dan en dan zegt hij van het is net een kleuterklas. Ze lachten en ze stoeiden. En dat zijn kinders van 20 en 18 jaar ik wil maar zeggen. Dat 175

176 176 is echt druk. Maar hij vond, naderhand zei hij: ht was wel gezellig en dan denk ik zie je wel, het was wel gezellig vanmiddag. Maar je moet er de ruitme voor hebben he. Ik bedoel wij doen kerst altijd met mn drie kinderen en alle kleinkinderen altijd samen.vroeger bij mij, maar nou doen we het bij mijn dochter en die hebben een ruimte, en een grote plaats. [ ] En dan doen we [ ] eten en dan, we doen het dan wel bij mijn dochter vieren Dat doen wij ook altijd. Net als nou wordt hij 75 en zei Sanne kommaar naar mij ik heb een grote plaats en grote kamers. Kan hij overal heen en heeft hij de ruimte, dus ja, dat vind ik ook altijd. Dat vindt hij ook heel gezellig als we naar de kinderen toegaan. Ik: zijn er ook situaties waar u nooit een grapje over zou maken? Dat zou ik nooit humor gebruiken {haalt schouders op} ja zo eigenlijk niet echt. Nee ik zou het zo 123 niet weten Ernstige ziekten bijvoorbeeld wel, bijvoorbeeld kanker Wel over zijn eigen ziekte ook niet, dat hij iets niet weet, als hij nou iets zegt van god dat is zus en zo dan zeg ik Ja dat weet je toch niet, dat kan niet dan zegt hij dat is zo wel en dan wordt hij eigenlijk boos in plaats van dat hij erom lacht. Nee daar kun je geen grapje over maken. Ik: omdat u dan bang bent hem te kwetsen? Ja, ja dat do ej eniet,. Ik zal ook niet zeggen van je hetb Alzheimer dus je weet het niet. Of daarom weet je dat niet want je hebt Alzheimer, dat zou ik nooit tegen hem zeggen. Dat woord dat gebruiken we bij ons nooit. Complimentje geven Heel veel complimenten Van als hij iets gedaan heeft dan zeg ik goh dat heb jij goed gedaan en dan zegt hij: ja ik kan nog wel iets want hij voelt zelf dat hij dat niet kan. En dan zeg ik: ja dat heb je goed gedaan Nou daar heb ik misschien een mooi voorbeeld van. Dat was dus toen wij naar die broer gingen die werd dan 80 en toen heb ik zelf gereden en daar had ik ook even moeite dat hij niet zou gaan. En daar zat dus een etentje aan vast, want die werd 80. Toen heb ik opgebeld van wij kunnen niet blijven eten want Pieter heeft slikproblemen. Trouwens, dat weten ze wel maar ik dacht ik bel toch exra op want. Pieter heeft eetproblemen. Enfin, god, we komen daar en op een gegeven moment moest er gegeten worden en, nu, jullie blivjen toch ook eten ik zeg nee Nelly ik heb opgebeld dat we echt niet konden blijven eten. ja dit en dat en toen zegt ze he, dat we, eh, hoe doet hij he tdan op de Hazelaar ik zeg: ja daar kan hij alleen zitten, daar kan hij alleen zijn eigen eten gewoon ervan genieten op zijn eigen manieren en dat gaat

177 heel goed. Jaa ging ze even weg, iets doen, dat doet er niet toe, komt ze terug nou heb ik het gevonden weet je wat we doen, we, onee, bij dat eerste zei ze toen ik dan zei van de Hazelaar uit [.] toen zei ze van weet je wat we dan doen dan zetten we dan zetten we daar een tafeltje neer en dan kan hij met de rug naar ons toe gaan zitten en dan kan hij nou toen ging ik al door de vloer maar enfin Nouuuu Je zit daar, ehh, ergens daarna kwam ze weer terug en toen zei ze: nou weet ik het, weet je wat we heel goed kunnen doen? Jij eet met ons mee en dan moet Pieter in een kamer met een stoel gaan zitten. Wat hij doet ja hij kan gaan zitten slapen of wat nou toen ging ik helemaal door de grond. Ik: ook al is het goed bedoelt uiteindelijk voelt u zich niet begrepen Ja Nou nee ik kan dat niet verkroppen. Ja maar zelf doen ze ook vrijwilligerswerk bij de zonnebloem. Hoe kunnen mensen nou, die zelf dan, ja, nee.. Ik kan hoe kun je zoiets nou zeggen? Als bij ons iets in de familei doen ze gewoon, ja mijn man kan ook niet goed eten en dan zeggen ze hee, wat wil je op je toastje en dat maken ze en geven ze aan hem Kijk Ja hij kan het zelf ook niet want dan pakt hij nisk want hij weet ook dat hij dan zit te knoeien Nou kijk En dan pakt hij zelf niks maar dan doen zij als ze naast hem zitten Dat doen ze bij ons ook allemaal Bij ons, ja je mekrt ook wel dat je vriendenkring kleiner is geworden. Misscvhien. Je hebt de mensen die ervaring heb ik heb, de echte die zijn overgebleven. Die echt ook bezorgd mee zijn. En die lief en leed willen delen. Nou, en dat is gewoon heel fijn. En [ ] Veel mensen begrijpen ook niet dat ze die ziekte hebben den dan zeggen ze [..] nou ook dan zien ze hoe het verder staat en nou begrijpen ze het wel Ik: ja dat duurt ook even En nou helpen ze me van alle katktne. Of ze maken een grapje met hem Ik: dus mensen die blijven daar kan u en uw partner ook veel mee lachen Ja daar kun je veel mee lachen Ik: is dat een tijdje minder geweest? Ja, ze gaan u ebgrijpen en zien wat voor moeite hij zelf heeft en wa tik ermee heb en pakken ze het anders 177

178 178 aan. Nou willen ze wel helpen en me van alle kanten bijstaat. Ja ik heb iets opgeplakt. Dit is een regenboog, opsekop en een boom. Hij kan de hele dag voor het raam zitten en dan zit hij alles te bekijken. En dan hoor ik sirene en dan zeg ik ja nu gaat hij van het Elisabeth naar het Tweesteden. Ja nu gaat hij weer terug. Zo zitten we dan de hele dag. En dan komt er een vrachtwagen, Piet Appels. daar komt de broer van Karel weer langs Karel Appel Ahhh wat leuk Alles wat langs komt Hij is uiteindelijk nooit chagrijnig dus hij is het zonnetje in huis. De allereerste jaren dat wij inde flat woonden hadden wij het raam open. Niet nagedacht dat insecten zo hoog konden komen dus s avonds gaan wij te bed en ik kijk naar het plafond. Het stikte van de lieveheersbeestjes! Ik moest zo toch wel lachen! Als het heel plafond vol zit lachen we niet meer. Maar nou als we savonds de ramen open zetten doe ik dat niet waar dat lampje hangt want door dat lampje komen ze. Ja, daar hebben we het dan nog steeds over. En dit, hij is altijd aan het autorijden geweest maar dat kan nu niet meer. Dat vind hij nog steeds altijd erg. Dus daarom heb ik dit neergezet Ik: en wordt hij daar wel eens mee geconfronteert, laat hij ng merken dat hij dat nog erg vind? Af en toe wel; dan zeg ik van ik hebegen zin de auto te pakken en dan zegt hij zal ik het even doen dat zou hij dan nog doen. Ja ik heb zijn rijbewijs laten verlopen amar daar was hij wel kwaad om. [ ] Zn rijbewijs verlgengn en toen zei hij dit moet je verlengen en ten zei ik waarvoor? Je kan niet meer rijden [ ] Dus daar heeft hij nog steeds spijt van Ik: lost u dat dan op met een grapje? Nou als hij dan zegt zal ik even rijden voor jou? Haha Ik: dus hij maakt dan zelf een grapje? Hij weet het eigenlijk wel En dit, ja, hij is heel blij als de kleinkidneren komen en 1 die zwemt. Dat vind hij geweldig. En mijn ene dochtre die heeft twee kinderen en twee pleegkinderen en die ene doet aan nationale dinges Judo. Die was laatst weer Nederlands kampioenschap derde. Dat vind hij dan fantastisch Neemt u hem dan daar mee naar toe? Naar wedstrijden? Ja ligt eraan waar het is he. Ja we moeten er wel kunnen komen. In Goirle is dat ook vaak toch? Ja maar laatst [ ] Dat vind ik dan toch wel een heel eind Ja dat is een heel eind

179 Is hij ongeduldig? Hebt u dat met uw mannen, ongeduldig Ja af en toe, dat ligt er maar net aan. Af en toe wel aen af en toe niet. Af entoe gaat hij de heel dag op zn gemakt zitten en dan zegt hij soms ach daar is de zon nou meoten we echt weg! De zon, dan wil hij gewoon eruit. En dan die bleoemtjes heb ik erin gezet af en toe als ik boodschappen ga doen dank zegt hij: denk eraan dat je een bloemetje voor jezelf meeneemt en als ik dan thuis kom en bloemetjes heb zegt hij die heb e van mij gehad he zo fijn, achj Ahhhh dat is leuk Ahhhh leuk! Aahhhh En snoepjes moet hij niet zien want dan is hij aan het snoepen. Dan zie thij dat ik detafel aan het dekken ben en voordat hij gaat zitten aan tafel dan doet hij nog een snoepje in zijn mond en dan zeg ik: moet dat nou Theo? Als hij ze ziet staan.. Dat is bij ons met die banenen, net gegeten maar als hij ze ziet staan pakt hij ze toch Ik ehb dat fruit energezet; een appel kan hij niet meer wegkrijgen. En dan komt alles eruit, niet die papel maar nisk als slijm. Als hij een appel of een peer, nu eet hij kiwi. Een appel, nee. En dat heeft hij hier ook bij de Hazelaar. Thuis is dat begonnen met, met rijst eten. Toen zei hij dat is veel te droog ik kan dat niet meer eten. En dan zegt hij: dat wil ik nooit meer. Maar toen kreeg hij het met appel of iets anders. En ja 1 of twee keer in de maand anders pakt hij dat niet. Ik denk dat hij niet goed kauwt. Anders is dat te hard.de dokter weet ook niet waar dat van komt. Want ik bedoel hij snijdt het in 4en en snijdt zon stuk ineens in zn mond [ ] Van de banaan daar is hij niet weg van. Dus daar heb ik dit opgeplakt. Televisie dat is voor te lachen. Daar kan hij mee lachen, ik zet op wat hij leuk vind. Banen vind hij heel lekker. Als ik die pak dan zou hij deze het liefste het hele dag eten. Ook na het eten, vlug als ik het niet zie. ik: daar moet u dan om lachen? Autorijden ja hij kan geen auto meer rijden en ik moet het doen dan kan hij niet in de auto komen en dan zegt hij godver ik kan niet meer in die auto komen, ik ben veel te oud en dan zeg k ik ook niet meer zie je dat been? Want ik had het aan mn heup toen, een nieuwe heup. Dus ik kon dat been niet meer in die auto krijgen ik zeg zie jdat ik dat nou ook heb. Maar jij rijdt nog auto zegt hij. En toen zei ik ja maar straks kan ik dat weer goed. [ ] Zie je stoms sta je ervan te zien watvoor, hoe clever ze zijn. En op een ander moment Dan weten ze niks. 179

180 180 Vragen ze 3 keer welke dag is het nou Dat vind ik zo leuk leuk Ik: dus hoe zegt ook gewoon ik heb er ook moeite mee Ja heel goed En dan zegt hij kun jij dat ook niet en dan zeg ik nee ik kan dat ook niet dat zie je wel. Straks als ik geopereerd ben kan ik dat weer. Dus nou was ik geopereerd en zegt hij ach wat kun je nou toch weer fijn auto rijden he. Ik zeg ja en jij ook weer. En hij zegt ja het gaat al beter, en dan doet hij toh p [ Mijen ook dan roept hij van: jij rijdt eigenijk beter dan ik Jaa Ja [.] Hij weet dat als ik dat niet meer doe dan komen we nergens meer Ja zegt hij dan wat hebben we toch een fijne auto, ja wat een fijne auto. Wat kun je dat toch goed [ ] wij zijn toch maar met zn tweeen dus ik heb de zitting eruit gehaald dan kan ik zn rolstoel hoef ik hem niet helemaal uit elkaar te halen. Dus dan kan ik hem gewoon zo erin steken. Wij hebben nog geen rolstoel Ja maar hij kan niet lopen dus. De douche Ja het zonnetje hij wil altijd naar zee met de trein. Dat vind hij helemaal geweldig. En dan, hij heeft bij de spoorwegen gewerkt en dan zeggt hij ik mag erste klas rijden. En dan mogen wij alleen tweede klas maar dan zeggen ze tegen ons goh ga eerste klas zitten en dan komen ze langs en zeggen ze god joh, dat is goed zo. En dan zegt hij tegen mensen: ze zeggen tegen mij, kom maar Henk, ga maar eerste klas, fijn man, zegt hij dan Opscheppen zo weet je niet. ik mag eerste klas rijden kom maar, daar zitten. En sporten hij heeft altjd hardgelopen en denkt dat hij dat nog ken Dan zeggen de kinderen je doet toch niet veel pap en dan zegt hij ja ik ga iedere zondag hardlopen hij denkt gewoon wat hij nog hardloopt en zegt dat kan ik ngo goed en loop iedereen het snot voor zijn ogen Wat zwegt u dan? Niks, je gaat gewoon mee. Ja Ja, geen discussie. Dan neem je dat ook weer af. Hij denkt dat hij nog goed kan lopen [ ] Dat kan nou ook niet meer dus nou wandelt hij gewoon me. Zegt hij moet ik mn kleren niet mee te nemen? Nee je hoeft

181 alleen maar schoenen meenemen. Je heoft jezelf niet meer te verkleden. Oh, dat is wel fijn dan weet hij niet meer [ ] hard lopen En zwemmen ik ga 1 keer inde week zwemmen en dan zegt hij jij gaat lekker zwemmen dus ik zei oké, jij mag ook mee gaan zwemmen. Het is geen zwembad waar gedoken word. Oke wij gaan zwemmen. kan ik heel goed, ik kan echt nog heel goed zwemmen ja dan doet hij twee keer zo [zwembeweging] maar dan zakt hij weg. Ja Hier naar die kant zeg tik. Want daar kon je net niet staan dus moest hij echt... Ik; en heeft hij dan door dat het niet lukt Nee hij zegt: Ik kan heel goed zwemmen, dat verleer je niet dus ik durf er eigenlijk niet alleen meer mee weg. Dan zwemt hij naar het midden en als ik dan moet helpen. Ja En eerst zijn ze hier ook gaan zwemmen he. Maar dat doen ze niet meer Nee dat is zeker jammer En dan in bed, gezellig stoeien en dan hebben we ook lol. Die van mij gaat eerder te bed als ik Oh nee wij gaan altijd samen. Dan zegt hij wel gaan we al naar bed want ik krijg slaap. Ik krijg echt slaap. En dan zeg ik: even wachten, even hart van Nederland afkijken Ik heb van alles de zon gemaakt. Vooral de zon van proberen te zien. Ik: hoe doet u dat dan? Door overal het positieve uit te halen en daarmee verder te gaan Ik: en u staat nooit op en denkt: vandaag heb ik een baaldag? Nee, nee dat heb ik nooit. [ ] *missend stuk in opname* Ja hij was dus met fietsen gevallen en dan pak ik de verbandtrommel, en dan neem ik zo een heel groot verband. krijg je zo aandacht genoeg zeg ik dan Ik: u zegt dat uw man laatst ook was gevallen, kunt u zich voorstellen dat u in zo n situatie ook zo n grap zou maken? Nee, ik zou zoiets nooit doen, dat past niet bij mij. Andere opmerkingen: Verbitterde man: ja in de supermarkt aan de kassa, daar kan ik nog eens een grapje maken en dan lachen ze om me. Maar thuis, ze lacht helemaal niet 181

182 Appendix E. Results of the generative session; Sensitizing booklets, an impression 182

183 183

184 184 Collages made by the particpants

185 185

186 186

187 187

188 Appendix F. Exploration of the conceptualisation phase refine design direction ideation ideation vision exploring collection and sharing of humour tokens 1 concept proposal exploring the collection object 2 1. Exploring collection and sharing of humour tokens Aim/goal The aim of the first user test session is to explore the interaction of collecting humorous memories. Furthermore it is important to see how the process of sharing these memories develops and what the role of the memory objects is or might be. This is important in order to define how the concept can facilitate and stimulate both the process of collecting as well as the process of sharing. 188 Several sub questions are of relevance and function as a basis for setting up the session. The first is what objects remind people of humorous situations, followed by what objects would people collect and how. Another important question is that if people do not have a memory object jet, can they create one and if so, how do they approach this. Also, what materials do they use for creating this memory object and why these. A final important question is how the interaction of sharing the experiences between people is, and what the role of the object in this is.

189 Approach This user test is of an open, explorative nature. Participants are four students of the faculty of Industrial Design Engineering from different master directions. Participants are invited through and participation is on a voluntary base. The test consist of two parts: the preparation part and a generative session. During the preparation part the participants are asked to fulfil several tasks in preparation of generative session. These tasks are received by them through , one week prior to the session. The tasks how they are send to the participants are displayed in the figure below In the accompanying participants are asked to read the tasks as soon as they read the and to keep them in mind fulfil them in the upcoming week. This is important to simulate the process of gathering humorous experiences over a longer period of time. Also, aim is that this will trigger a certain awareness and sensitivity for the experiences of humour that are to come in the upcoming week. Expectations are that Memory objects could be either 2D or 3D. However, it might be possible that due to convenience participants only bring 2D objects. It is 189

190 therefore implemented in the tasks to bring both 2D and 3D objects. The generative sessions is started by a short introduction on the planning followed by the participants shortly introducing themselves by telling their name, direction of studies and a short explanation on the items they brought as part of the preparatory tasks. This does not only function as an icebreaker but also gives insight in the objects that are collected. Also, as they elaborate on the story behind the objects also the interaction of sharing can provide insights. The main part of the generative session consists of two parts being the creational part and a group discussion. In the creational part participants are introduced to the concept by giving a short explanation and showing some pictures. Key elements that are explained are that the product will be standing somewhere in their home and is aimed at collecting, displaying and sharing memories of humorous situations by creating an artefact and adding this to the collection object. The participants are then asked to create a memory object as they would add it to the collection object. The memory object has to represesent an experience of humour they had within the past week. They get twelve minutes to do so and are provided with a wide range of craft materials: (picture of materials) clay, cardboard, post-its, drawing materials such as pencils and markers, googly eyes, stickers, ribbons and different sorts of magazines (fig XX). Selection of these materials is based on the brainstorm that resulted from ideation session 2 which is to be found in APPENDIX XX. As IDE students are familiar to creative techniques and the creation of objects and visuals it is deliberately chosen to provide a fairly large amount of different materials. The materials that are provided range in ambiguity with photos from magazines and googly eyes being relatively unambiguous and materials such as ribbons and paper to be relatively ambiguous. 190

191 After creation of the object the participants are one by one asked to share the story behind it. After they have shared their stories the process is repeated: they create an object for another experience of humour and then again the story behind it is shared with the group one by one. During the discussion the participants are asked to reflect on the process. The discussion is of an open nature, but several questions are drafted in order to be able to answer the questions and sub questions as they are described in the beginning. The questions are as follows: Was it hard to fulfil the tasks How did you experience these tasks How did you approach the tasks; did you do them all in one day, or over the course of a few days How did you experience the introductory part of this session in which you had to share what you had brought How did you experience the process of creating the memory object Which materials did you find useful; which not that useful and why Where there materials that you missed? How did the collection-object affect the shape/size of the memory object you created The whole session is recorded on video tape for the sake of analysis. Results The pictures on the next page show all results. The pictures show what particpants had brought as well as the tokens they created. 191

192 My boyfriend got this through mail and I just thought it is the weirdest thing; what is it, a penis pump? Hahaha My friends gave this to me for my birthday; it was filled with money. It took me a while before I realized that my own head was on the dollar bill! I kept it cause i thought it was funny to have your own head on a dollar bill The 3D object that makes me laugh is actually a human being. It's my girlfriends cousin. Everytime I see him I just have to laugh. It's not specific things, but more how he does it. 192

193 I think this object is really funny cause when someone looks at it, like very concentrated maybe with their mouth open and stuff; than it looks really funny for the people around him without the person himself noticing that he is looking funny I got the suit from this guy, the one you can get for free at Jumbo; and this was attached to it. It is a werid picture and it made me laugh so I kept it I was with my girlfriend in The Hague and we ordered a large apple juice with two straws cause we wanted to share it. When we got the receit the two straws were on it, but the funniest part was that they were free of charge 193

194 I saw this a few days ago and I think it is really funny. Everytime you sink a ship you have to drink the shots in it (printed picture) This picture is really funny cause this is a friend of mine and she usually acts very masculine; for my birthday I made her dress up like a man and another very feminine friend I made up dressed like a man. That's what makes this picture so funny (printed picture) My boyfriend he is bald; and one time he put this thing on his head and it actually sucked on and was then stuck on his head. It was so funny (printed picture) 194

195 This is from the uno game which is I think a very fun game; you play it with friends and you can really annoy eachother which makes it so funny This is some ugly candleholder which I got druing a gift-game. You have to roll with dices and eschange gifts, that is really funny and in the end I ended up with this thing but I'm totally unromantic; I will never burn candles in my house, ruin all my stuff. But the game is so funny 195

196 Yeah this doesn't look funny but it reminds me of a funny situation which happened during this movie. I was watchin this movie with friends and a female friend of my was fancied by two boys at that moment. And then one of the guys stroked her leg as the movie was so scary, and so did the other one but then at one moment both the guys touched eachother's hands.. This was so awkward! But so funny; and ever since, that movie reminds me of (printed picture) I have got a rubber ducky and it is wearing a sheep suit. My girlfriend likes it so much that she tries to steal it every time she visitis. Lately she replaced the rubber ducky by the picture of the sheep which she tore of the toilet paper packaging. Some time ago I watched South Park so much that in a lot of real life situations I began to recognised a South Park situation; that was really funny 196

197 This picture is from when i was in Shanghai with my project group. A few people had neve rbeen in Shanghai and everything was new to them. It was funny to see their reactions to things that we are used to; for example like here when they taste the bubble tea for the first time (It s cold sweet tea with salted cheese on top and slimey tapioca balls) This one time it was my birthday and my friends threw me a surprise party. It was some kind of quest; I entered my house and there was a list of tasks and quests I had to do on people s facebook pages to get hints. Then i had to walk upstairs where they decorated the whole area in wicca style, with candles and stuff, a wicca board. Again I had to do things and finally I ended up being directed to a friends house where a lot of friends were to celebrate my birthday party. I actually almost forgot about my own birthday because I was so busy during these days Two days ago I was working on my graduation in my office together with Saskia, and we were singing very loudly and also falsely, and we didn't realise the door was open so then a few people passed by and curiously looked at us. We looked back but continued singing anyway 197

198 My boyfriend is in a band and he was on a tour. He got ut of the shower and one of the other band members came in and started soaping his mustache with a piece of soap (which in itsself is actually quite funny) but than my boyfriend asked: were did you get this piece of soap? And the other guy answered that he just took the one from the sink.. And my boyfriend said well that is actually the one I have been washing my whole body (including my ass) with. The other guy didn't believe him but it was actually true! When I just bought my motorbike I was trying to be masculine and impress everyone with it. So this one time I was trying to start it, to show it to my collegue but it actually didn't start I got kinda upset, I thought that it was broken, already! But then my collegue said: "well, you might wanna flip the killswitch" well, that was kinda embarassing... At my job, Im a waiter in a restaurant, one of the clients was sleeping. It was a quit day and then one of my collegues from the kitchen threw a silver plate at the floor, right in front of the customer. The customer jumped up and perplexedly looked around. Me and my collegue had to laugh and luckily the customer thought my collegue did id by accident but we both knew he didn't 198

199 There was a buddhistic monk in our flat, we live with 300 people in one building. He was asking for food and there was a whole rage starting on the facebook page of the flat about this guy. Everyone was giving him stupid things like canned pineapple and uncooked ricegrains In my highschool we always took a nap in the afternoon break; All of us were very much afraid of drooling on our arm or bench so when you woke up the first thing you did was checking if there were any drooling spots. So this one time we pranked our classmate by throwing a lot of water on his table. When he woke up he was shocked to see that his whole table was wet, hahaha 199

200 Furthermore the video recording of the session is played back two times. Interesting quotes are written down and if possible they are clustered. The most interesting quotes are shown in the conclusion section. All relevant results are divided into categories that relate to the previously described questions Collected objects - The objects that participants bring are fairly large, with the largest of them being around 30cms high (the glass bottle with the dollar bill on it). - For objects that were too large to bring, such as the plunger, participants used a picture of a similar object (not a photo they made themselves but one they got from google) - Participants already collect some funny items or items that remind them of funny situations, even though the objects themselves might be disposable (6, 15) - For the objects and pictures that are funny themselves (so that contain the punchline) all participants still give a short explanation from their own perspective: so why they think it is actually funny. Creation of memory objects - Certain craft items are used to make the artefact fun or funny: googly eyes, post-its and speech bubbles. Three out of four participants use elements like these - 3 out of four participants have a more or less similar approach: they first browse through the materials, take some time for thinking and then start with the creation of the artefact. - Almost all creation of artefacts starts with a base out of thick, neutral coloured paper (except for one) - Two out of the 8 created artefacts consisted of only one object (21, 24) other artefacts were combinations of more than one object. The objects are brought together mainly by glue (amongst others 20, 22, 26) sometimes by the use of ribbons (20, 23). Two out of the participants expressed that they would have really liked to have a quicker possibility like staples or tape. - All artefacts were further detailed by the use of drawing materials. Adding 200

201 these details made the head that was cut out into a specific person, and the plate from just any plate into a Wiccan plate. Even the artefact using clay as a base was detailed by the use of pens (24) - Artefact is often aimed to be funny as well (funny drawings, faces, constructions) such as 25; the amount of water is probably overdone. Interesting to see is that the punch line does not necessarily have to be the same in the artefact as it is for the story behind it: the huge amount of drool and the face of the guy makes the artefact funny while the punch line of the actual humorous occurrence lied more in the guy waking up and being fooled into the shock and shame of having drooled on his table. - The magazines are not once used to create artefacts. One participant skips through it, another one takes out an abstract picture but in the end none of them adds an element from the magazines to the artefact. - The artefacts always cover only part of the humorous occurrences: none of the artefacts communicate the punch line. This could be done by writing or drawing a storyboard, but none of the artefacts contain either of those options or something similar. Sharing the experience of humour - One of the participants specifically expressed fun in creating people: It is actually funny already to recreate the people you know; in a sense it is like making a caricature. - One of the participants mentions that for the collection of the objects she really considered whether others would find it funny too. She thinks she would have brought other things when doing such a session with close friends. A few of the others nod approvingly. One of the participants compares it with holding a quote booklet for a committee: this is a lot of fun when you share it with the people of the committee but for this session it wouldn t have been as powerful - One of the participant s mentions that she thinks her sense of humour is really sexual so not really appropriate. By mentioning this she also seems to do an attempt of humour. 201

202 - Two participants point out that they first thought the tasks were hard, oh shit, what should I bring but after they thought of the first item, they could easily think of more items and situations. - None of the humorous instances that were shared where solely verbal. Conclusions For analysis all elements of the session are brought together: the objects the participants bring, the ones they created as well as the stories behind them and the comments they made. Also during the discussion relevant input was generated. For conclusions that are directly link to the objects displayed in figure XX numbers referring to these objects are given. The objects participants bring Quite some people already collect things that trigger an experience of humour (2, 6, 7). These objects are usually not displayed at a central point, but kept in drawers or a wallet. The preparatory tasks that where given to the participants triggered them to go search for these. This is a clothing label with a picture of Roy Donders. I kept it as I thought it looked so awkward The objects people keep can be fairly large and not at all convenient to add to the collection object in its current form (3, 5, 12). This does not necessarily mean the object has to be altered in order to make this possible, but more that it should also be elaborated on that people might place things around the collection object. A certain categorisation can be made on all the objects collected or created. Some objects are funny in itself, meaning they contain the stimulus (1, 2, 3, 17). These are quite powerful when being shared and need little to no explanation. Other objects are in a way connected to the stimulus reminding the participant of the experience (amongst others: 4, 10, 13, 14). These need a more elaborate explanation. The third 202

203 category is mainly applicable on the objects that are created: these objects are experienced as humorous on themselves, so they contain a punch line. However, most interesting is that the punch line they contain usually is not the same punch line of the experience of humour they refer to. As an illustration: 22 is funny as these are two funny looking heads dangling with a piece of soap in the middle; however, the experience they refer to is different: it is about accidentally using a piece of soap that someone else has just washed is privates with. Participants state that at first they experienced the collection of humorous objects or memories as quite hard; they did not really know what to collect. However, as soon as they thought of the first thing they experienced it as way easier to collect more things. At first I thought: damn, what to bring? But then I found this first thing and I thought: if I can bring this, I might as well bring this, and that Access to digital media such as cameras, computers and phones makes it a lot easier to capture and bring representations of humorous experiences. Things they might not possess or that might be not convenient to bring or show are easily represented by a photo or a printed picture (amongst others 10, 14). It is expected that this makes it easier for the group of participants to provide input than it will be for the majority of the target group. It is therefore expected that for the target group the creation of objects that represent the experience of humour will be of bigger importance. The creation of memory objects Participants decide what to create as they go. By browsing through the materials they decide on the next thing to add to their object. The materials provided function as an inspiration. The more quick materials are to add the more popular they are. Instant materials 203

204 such as googly eyes and post its that stick are found very useful. This is in correspondence with the comments of participants that they would have preferred the use of staples or tape. Materials that are not considered to be useful are magazines. They possibly take too much time to go through and find something that fits the story they want to convey. The participants that browsed through them stated that they actually dind t know what they were looking for when doing so but as inspiration failed to appear they changed their approach. Many participants use cardboard as base; the cardboard functions as some sort of canvas to which they add details. The objects that are created do not speak for themselves, even though the participants are experienced to visual commination. This is considered to be a positive point: as the object requires explanation it triggers interaction between people. People tend to make the object they create funny in itself as well; as described before the object does not contain the stimulus it stands for, but the participant adds a new element of funniness to it. The stimulus that makes the object they create funny is not the same as the stimulus of the story behind the object. Markers are crucial. They are very functional for detailing± they can make a random person into the subject of the humour experience by just a few curls of hair. They really add to making the representation in the created object personal. Share the experience When selecting the objects they want to bring the participants take into account that they are probably going to share it within a certain group. They selected what to bring based on their expectation of what others would find funny too. If they 204

205 would have been in a similar session with only friends they would select other objects. This does not necessarily make them feel limited but it does influence the input. Same holds for the experiences they choose to create a memory object for; they would choose other memories to capture and share if the context would be different. Although these objects are not brought nor shared within this group, they have actually passed the participants minds. I really considered whether or not this would be funny to share in this group of people. You know, my sense of humour is quite sexual and I only share that with my friends but not really with people I don t know that well If someone shares an experience of humour this almost instantly triggers related experiences in other participants. The activity of sharing really triggers people to bring back memories they themselves have. When the experience on humour is shared people start from the experience; the object they created is used to support their story. Throughout the storytelling several elements of the object are highlighted Other insights None of the experiences that are shared are solely verbal such as a verbal joke or riddle. The setup of this research is possibly too limited to draw conclusions from this but the process of collecting and sharing seems to make people focus on a combination of verbal and physical humour. Most relevant insights and application Funny objects or pictures are a good starting point. As explained there are objects or pictures that contain the punch line and are therefore funny in itself. Quite a few people already have these somewhere. They are the least abstract and therefore the easiest to relate to. It is therefore a good starting point for the collection that the user will build. 205

206 It is the first object they collect that is the hardest. When this first object is collected collecting more becomes easier. The object collected also inspires and triggers to collect the next object. At the same time it needs to be taken into consideration that the lives of these participants might be relatively unconcerned in comparison to that of the target group. It might thus be the case that the target group will find it harder to come up with more objects. As opposed to the target group the participants of this session are familiar with creative methods. It is therefore chosen to provide them with a large amount of different creative materials. For the actual target group it is important to keep in mind that they are not familiar with creative materials and providing them with an amount similar to that in this generative session is likely to overpower them. However, this session provides insight in what materials are attractive to use, and what materials not. The materials should make it possible to quickly create something meaningful. Messy materials such as paint and clay require too much additional effort and are therefore not popular and very applicable. Stickers, markers and paper are on the other hand very quick and applicable. The provided material functions as an inspiration; this could be used beneficially. By providing the right materials collecting capturing reporting could be stimulated The memory object that people create is aimed to be humorous in itself. This might be stimulated and supported by providing materials that facilitate this and or inspire to do this. Elements that are very effective in this are googly eyes, speech bubbles Sharing the experiences is very inspirational; if someone shares the experience behind the object that this can trigger an association within someone else, who then refers to his own experience of humour. Sharing these experiences is very powerful and inspiring and should definitely be embedded in the concept. Further research should show whether sharing outside of the home context, for example 206

207 in a workshop setting or generative setting like this is of added value for the target group. 2. Exploring the appeal of the collection object Aim/Goal It is very important for the collection object to have the right appearance. The user should feel attracted to it and it should fit the experience of humour. It should convey the right meaning and trigger positive associations. This is important for several reasons. Firstly, aim is that the user will place the object in his home. Secondly, the object should stimulate the user in keeping the focus on humour for building the collection. The collection object should not invite for collecting random memory objects or even functional objects such as shopping lists or even mourning announcement cards. The three different concept appearances are shown in figure XX. Approach As aspects as meaning and association are rather subjective, it is considered to involve a larger and more diverse group of participants than for the other sessions. 21 people participated with an average age of 36. Participants are shown three different images of conceptual objects without explaining the purpose of the object. The images are shown in a random order and after each image they are asked the same questions which are the following At last the participants are shown the three objects next to each other and they are asked to state and substantiate their personal preference. Results All the associations participants have are displayed in wordclouds. The bigger the word, the higher the frequency. 207

208 208 Object 1

209 Object 2 209

210 210 Object 3