Behind open doors : an ethnographic study of a dementia care home with an open-door policy

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Ilse van der Klift 11011491

University of Amsterdam Medical Anthropology and Sociology Rotterdam, 04-07-2016 Supervised by: dr. K. Krause ms. A.E. Driessen MSc. Second reader: dr. G.J.E. Gerrits

Behind

open doors

An ethnographic study

of a dementia care

home with an

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Abstract

This thesis aims to show how the open-door policy of a dementia care home, called The Herbergier, is envisioned and made possible. Recent dementia research in the social sciences has not yet focussed on doors, apart from research on camouflaging doors or questioning the ethics of

monitoring people with dementia with GPS devices. In this thesis I will describe how the open-door policy is envisioned regarding risk and relational autonomy, and what happens when the residents want to go outside and there is no locked door to prevent this. I approach this topic as in line with “practice theory” (Reckwitz 2002) and am particularly inspired by Driessen (fc.), Latour (1988), Pols (2005) and De Certeau (1984).

I argue that the open-door policy is envisioned as not particularly risky compared to other risks of daily life. Also, the open-door policy is mainly about giving the residents the idea of freedom. I state that the open-door policy is a strategy (De Certeau 1984) to keep the residents inside the building, because the idea of being able to go should make the residents feel at ease with being inside. However, not every resident has this desire to leave. I contend that locking the doors of a dementia care home, not only prevents residents from going outside, but also restricts residents in interacting with doors in a “daily” way, such as checking the weather outside.

When the care workers do not agree with the ‘going outside’ of the residents, they make use of tactics (ibid.) to keep the residents inside. In this way, the purpose of locked doors (i.e keeping residents inside) gets replaced by care workers and their use of tactics, such as inviting residents for coffee or, when there is limited time, closing the gate at the exit of the property. With the use of these tactics, the residents are, when it is convenient for the care workers, kept behind open doors.

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1. Introduction

Photograph by Maja Daniels – Into Oblivion

The image above shows a woman with dementia in front of a locked door of the care facility where she lives, looking out of the window into a world that she cannot enter. In the Netherlands, people with dementia live at home with the help of their partner, children or others, or live in specialized dementia facilities when living at home is no longer possible. In these facilities, the doors are often locked in order to keep the residents from going outside with the intention to keep them safe. Recently, the mind set about locked doors in dementia care in the Netherlands is changing (NRC Next 06-02-2016). The main thought behind this change seems to be the question ‘what is the good of

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7 safety, when you have no freedom?’ (ibid). Care homes are experimenting with opening certain doors inside the care home or opening up their gardens for their residents. Some care homes take it a step further and open up their door to the outside. This thesis will focus on what happens in a dementia care home that has opened its doors.

A care organisation that is already doing this for years, is the Herbergier dementia care organisation, founded in 2007.The founder of the organisation, Hans van Putten, was searching for suited care for his mother-in-law with dementia and took the initiative of starting a care home. He looked for a (married) couple who would want to live in the same building as a small group of people with dementia and take care of them together with some staff members. This is how the first Herbergier was created (RTV Arnhem 2014). Now, almost ten years later, there are around 40 Herbergier care homes in the Netherlands and the parent organisation (the Drie Notenboomen) is constantly looking for more couples and locations in order to open up more Herbergier care homes, since its popularity is rising.

The care philosophy of the Herbergier organisation is that Herbergier care homes should have a warm, homey atmosphere and should be accessible and affordable for every person with dementia (De Herbergier, n.d.). Individual wishes should be respected and realised as far as possible and there should be no rules that restrict the residents in their doings. There are a few principles that,

according to the organisation, contribute to this philosophy: no sedative medication, the residents should be in control over his/her own life (eigen regie) and the open-door policy (ibid.).

To live in a care facility, one needs an indication from an independent agency called the CIZ, who estimates how much care is needed. For example, to go to a care facility with specialized dementia care, one needs a ZZP-5 indication (it is not relevant for this thesis to explain the other indications). With this indication, persons can apply for a regular care home1, receive care as organised by their municipality, or receive an amount of money in order to organize care themselves. This last option is called a person-bound budget (PGB) (Per Saldo, n.d.). This PGB can be used to finance living in a private care home, such as the Herbergier.

In relation to the wider care landscape in the Netherlands, the Herbergier positions itself as an home, instead of an institution. For example, breakfast can be eaten at any time in the morning; residents who get up early can do so and others have the possibility to sleep in. Also, the Herbergier works with an interest list instead of a waiting list when there is room for a new resident. Regular care

1_{In Dutch health care, a distinction is made between regular care (reguliere zorg) and private care (particuliere}

zorg). The main difference is that regular care homes get funding from the government and private care homes

are started on the initiative of an organisation or an individual and needs to provide its own funds. This means that private care homes are more expensive to live in, because the residents have to pay what the government does not subsidize.

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8 homes have to take in every person that applies and whoever is on top of the waiting list. Private care homes like the Herbergier have the freedom to choose new residents. So the result of having an interest list instead of a waiting list, is that the Herbergier does not have to pick the person who is waiting the longest. Instead, they can chose a new resident based on who fits best in the group. This is dependent on the character of the new resident, but also on how much care or assistance this person needs.

Another difference with regular care is that the employees of the Herbergier do not always have an education in health care. Also, the Herbergier is able to schedule more staff per shift than regular care homes can, because they hire lower educated staff and because private care homes usually have more funds than regular care homes. During the day and evening shift, there is at least one care worker per four residents.

Perhaps the biggest difference between the Herbergier and how regular dementia care used to be, is the open-door policy that the Herbergier maintains. This policy means that residents who want to go outside, can do so. Residents who are able to find their way back go outside to the shops, a park, or where ever they like. Residents who might get lost, wear a GPS tracking device so the care workers can keep an eye on them2. This is not completely without risks. Opening up the doors of a dementia care home, has the possibility of residents going outside without being noticed or getting lost. In 2013, a resident of an Herbergier care home in the west of the Netherlands got lost and was found dead hours later (2Doc 29-10-2015). This is the worst case scenario of something that can happen with an open-door policy.

Opening the doors of a dementia care home, raises a couple of issues that will run through this thesis, such as risk, autonomy and the effect of built environment on what happens in the care home. In the following I will give a brief introduction into the debates and the theory on which I build my argument. However, the main theorists that I use in this thesis will be explained in more detail in other chapters.

Risk, in modern society, has turned from a neutral term into something negative and dangerous (Douglas 1990). In health care, risk is mostly seen as “something dangerous, it is something that needs to be managed and avoided where possible” (Robinson et al. 2007:390). Clark (2000:84) argues that there are three domains of risk in dementia care: the physical domain (e.g. the risk of falling), the biographical domain (e.g. the risk of loss of self-identity) and the interpersonal domain of risk (e.g. the loss of a life partner). Opening doors can increase the risk of physical risks, such as falling or getting lost, with the example of the woman who got lost and passed away as the greatest

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This information is given to me by a care worker of another Herbergier than my research location, with whom I spoke to get an idea of the Herbergier organisation before I started my research.

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9 risk. On the other hand, the open doors can reduce the biographical risks of losing one’s identity, because the resident is encouraged to make autonomous decisions like going outside. Autonomy is a central topic in the discussion about the loss of self in dementia research since Tom Kitwood argued for the beginnings of person-centred dementia care (Van Dalen 2012:24). Kitwood strived for basic principles in dementia care that would enable individuals to exercise choice, user their abilities and express their feelings (Kontos 2005:556) and strived for seeing the person with dementia as a unique individual and not as subjected to their disease (Van Dalen 2012:24). Autonomy is also an important topic in health care literature, because (patient) autonomy is one of the four key principles of ethical practice in nursing care (Lindberg et al., 2014:2208). Ells and colleagues (2011) state that autonomy should be examined with taking relationships and the whole structure of a society into account (Ells et al. 2011:85). “Autonomy, self-identity and decisional capacities are dynamic in nature, changing with the meanings and structures of people’s relationships and their world” (ibid.). With this statement, the authors say that autonomy is a fluid and gradual process.

The Herbergier aims to strengthen their residents’ autonomy by letting them make decisions regarding their daily life, such as the decision to open a door and go outside. However, the word ‘autonomy’ can be problematic in the context of people with dementia, since autonomy requires a certain degree of rationality and reflexivity to be (re)constructed. It can be questioned if people with dementia are still capable to do this. Adding to that, part of autonomy is the obligation to take

responsibility for one’s actions (Lindberg et al.:2214, emphasis added), which might be too much to

ask from a person with dementia. This is also why, for example, the Dutch government considers people in a certain stage of dementia as ‘wilsonbekwaam’, which means that they are seen as incapable of making responsible decisions (Rijksoverheid, 2014), for instance while going outside without supervision. This is why Ells and colleagues argue for a supportive social context that is needed for people to develop autonomy (Ells et al. 2011:87). However, this ‘relational autonomy’ does not imply equality between the actors.

Despite the fact that ‘autonomy’ can thus be a problematic concept in the context of dementia research3, there is no doubt that people with dementia still want certain things and can take the decision to put these desires into practice. Driessen (fc.:6) separates “a more cognitive wanting,

pertaining to the realm of the legal and long term decision making (‘willing’), from a more immediate, emotionally and bodily informed activity (‘wanting’)”. Using the term ‘wanting’ helps me to keep the

discussion of autonomy at the daily desires of the residents instead of the long-term decision making process that is involved when talking about willing.

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The Herbergier does not find the concept ‘autonomy’ problematic in the context of people with dementia. Many care workers told me that autonomy can be found in the smallest ways of communicating with the residents and that it is the task of the care worker to recognise it and work with it.

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10 Residents who want to go outside, but live on a closed ward, are restricted in putting this wanting into practice. Previous research has focussed on preventing this ‘trying to go outside’ by

camouflaging or hiding doors and door handles (Dickinson et al. 1998; Mazzei et al. 2014) or other interventions (Lucero 2002) in order to manage the risk of escaping. Others see locking the residents as part of abusive behaviour (Kelly 2010) or even as dehumanising (Wigg 2010).

When an open-door policy is maintained, a resident’s ‘wanting to go outside’ can be changed into ‘going outside’ since the locked doors are not there to stop them. So what happens when a resident wants to go outside? And how is the actual ‘going outside’ managed by the care workers whose task it is to keep the residents safe, but who are at the same time not supposed to restrict the residents’ freedom? The literature that focusses on freedom in dementia care is mainly about the ethics of following people with GPS tracking devices, which is used to keep wandering persons safe but is also seen as a violation of their privacy (Landau et al. 2010; Landau & Werner 2012; Robinson et al. 2007). Wigg (2010) is, to my knowledge, the only researcher that has done research in a care home with open doors. Wigg writes about the action of residents going outside, how the technology then warns the care workers about this and that a care worker goes outside to get the resident back inside. She does not write about the processes around this, such as why the resident went outside and how the care workers manage to guide the resident back inside again.

Considering the fact that care homes in the Netherlands are opening their doors and the lack of research on what actually happens when an open-door policy is maintained, it is important to do research on a care organisation such as the Herbergier, where the doors are already open for almost ten years. As autonomy is an important topic in dementia research and in the care philosophy of the Herbergier, I was inspired by Driessen (fc.) and explored what happens when the residents want something. In this case, that ‘wanting’ is going outside.

To research this, I used the following main research question as guidance:

How is the open-door policy of an Herbergier dementia care home in the Netherlands envisioned and made possible?

Throughout this thesis I am inspired by different theorists. For my methodology, I am inspired by Stefan Hirschauer and Jeanette Pols. Hirschauer (2006) emphasises the need of thick description and how the interpretation of the “silence of the social” gives the ethnographer an amount of freedom that can be “frightening” (ibid.:437). So in order to not misuse this freedom, I tried to understand the people with dementia in my research as much as possible. Therefore I used participant observation as methodology, with extra attention to the “enactment of appreciations” (Pols 2005) and I tried to relate to the residents. Further on in this thesis, I draw on several other theorists who can be

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11 described as in line with “practice theory” (Reckwitz 2002), such as Bruno Latour, Annelieke Driessen, Thomas Gieryn and Michel de Certeau.

Latour (1988) has written an article about a door-closer and what happened when this door-closer was out of order. He shows what doors do for us and how we have delegated human tasks, such as closing the door behind us, to non-human actors as a door closer. Throughout this thesis, I keep Latour in mind while thinking about what doors, locked or open, can do. I will show what happens when a non-human like the locked door (to which we [humans] delegated the task of keeping people with dementia inside) is no longer there. The task of the lock (keeping people in) is, in the Herbergier, delegated to the care workers. I will explain how the care workers manage this, by using De Certeau’s (1984) notion of strategies and tactics and Driessen’s (fc.) notion of sociomaterial will-work.

With this practice theory approach on what happens around open doors, I add to the risk debate by describing how the care home sees the open doors as not more than a daily risk and that not every risk in life can be eliminated. Also, I add to the autonomy debate by showing, with the help of

Driessen’s definition of wanting, that the residents are encouraged in expressing what they want and that they have the possibility to act out what they want. However, their autonomy is relational and the actors in this relationship are not always equal to each other.

1.1 Chapter outline

In the following paragraph I explain what can be expected in the rest of the chapters.

In Chapter 2 I explain the methodologies used and how I experimented with them. I also explain why working with people with dementia as respondents, was sometimes challenging for me and how I tried to solve this with the help of relating and the enactment of appreciations (Pols 2005). I reflect on the field work period with the help of Hirschauer (2007) and describe why I made certain decisions during the field work and the writing period.

Chapter 3 will describe my research location, its building, its community and how it relates to the general philosophy and principles of the Herbergier organisation as described in the Introduction. Also, this chapter will show how the open-door policy is envisioned in terms of risk and autonomy and that the idea of freedom is the most important reason behind the open doors.

Chapter 4 aims to show how the residents interact with doors in different ways. I describe the narrative of a resident who wants to escape the care home, how another resident interacts with doors during her attempts to escape and how yet another resident interacts with doors in a way that has nothing to do with wanting to leave. Because the doors are open, the desire to go outside can be put into action. This requires a different kind of care than in locked care homes, which will be shown

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12 in Chapter 5.

The content of Chapter 5 shows how ‘going outside’ is negotiated by the care workers and residents, and how the care workers strive to find a balance between respecting the resident’s autonomy while keeping them safe at the same time. Drawing on Driessen (fc.) and De Certeau (1984), I show how ‘strategies and tactics’ are used as a replacement of the locked doors when the residents are not supposed to go outside.

Chapter 6 will bring the previous chapters together in order to answer the main research question.

1.2 Terms

In order to ensure that it is clear what I mean, I define some of the terms that I use throughout this thesis in the following.

Residents

The word ‘herbergier’ is the Dutch word for a person that runs an ‘herberg’, which is an inn. This is why some Herbergier care homes call their residents ‘guests’. The care home where I did my

research calls them ‘residents’, because they live in their own apartments in the building and ‘guests’ sounds as if their stay is temporarily. Also, the word ‘resident’ “attempts to create a notion of home” (Reed-Danahay 2001:50) and does not ‘victimize’ a person like the word patient (2Doc 28-10-2015).

People living with dementia

I prefer to speak about a person with dementia instead of a person suffering from dementia, or a demented person. Having dementia is hard and the residents of the Herbergier certainly had

moments of suffering, but the word suffering makes the residents into victims of their disease, while many residents were learning or learned to live with it. The personhood of people with dementia is becoming more recognised in dementia literature (Bartlett & O’Connor 2007). The language is changing from “people with dementia, to people with dementia” (Bartlett & O’Connor 2007:114). Words like ‘the demented’ should therefore be problematized.

Zorgondernemers

The word ‘zorgondernemer’ is a Dutch word that is unique for the Herbergier. ‘Zorg’ means care or healthcare and ‘ondernemer’ means entrepreneur. But the verb ‘ondernemen’ also means to

undertake a certain task or activity. So basically the word zorgondernemer means care entrepreneur. The zorgondernemers are usually married couples who have experience in healthcare and

management. At least one person of the couple has to have an education and work experience as health care professional. The zorgondernemers run the Herbergier, do the finances, management

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13 and are the back-ups for the nightshift when something happens. They are also the contact persons for the family members and discuss the ‘care plan’ with them.

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2. Methodology

During the preparation of my research, I planned to use the methods participant observation and informal interviewing. I expected that having respondents with dementia could be challenging and that different methods had to be used per person. It was a matter of trial and error to find out which ways of communicating worked, and in this section I will explain how I experimented with research methodologies, how I gathered information by relating to each other and the enactment of

appreciations (Pols 2005) and how I dealt with certain challenges. Some personal reflections on the research period will be shared in Chapter 7.

2.1 Consent

Before starting my research, I had a conversation with the zorgondernemers of the care home. I agreed with them that my research would be anonymized and that I would inform the family members of the residents. I sent a letter to the zorgondernemers and they forwarded my letter to the families and the care workers. In this letter, I explained who I was, what my research was about and what it would imply for their loved one. I explained that I would always keep track of if a resident was uncomfortable because of my questions or my ‘being-there’ and if I sensed a bit of distress, I would stop. I also wrote that they can contact me or the zorgondernemers if they have questions or if they would not want their loved one to take part in my research. No one responded to this, so I started my research and included every resident and care worker as respondents.

During my research, I followed up on my promises and I did my best to protect the well-being of the residents at any cost.

When I entered the field, I introduced myself and my purpose of being there to every new person I met (resident, care worker or family member). The contact with the residents felt natural, but I think that they assumed that I was one of the care workers or an intern, although some of them did understand that I was there for research.

2.2 Methods: relating and the enactment of appreciations

My main research method was participant observation with which I “produced experiential knowledge” (Russell-Bernard 2006:360). Participant observation allowed me to collect (mainly) qualitative data by getting close to people. To become a participant observer, I took on the role of a volunteer next to my role as researcher. The first week of my research, I did a lot of voluntary work in the living room of the care home, in order to get to know the residents, the care workers and the family members. This work included making coffee, laying tables, eating with residents and joining activities such as grocery shopping or gym class.

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15 During the participant observation, I had many conversations with care workers and residents. This required a good memory and a lot of jotting or note taking (Russell Bernard 2001:156), since I could not write everything down directly. Most conversations with care workers took place during care tasks or activities, and most conversations with residents took place “in between” activities. I spent a lot of time on “being with” the residents; so drinking coffee with them, walking outside with them, sitting next to them, etc.

I was constantly searching for ways to ask questions. I realised soon that interviewing was not the right way to gather information from the residents. The method ‘interviewing’ assumes that the respondent has and can reproduce the knowledge that you ask for. As Hirschauer puts it: “interviews are verbalization methods presupposing that people have specific knowledge that can be extracted by means of questioning” and that they have access to “past events and experiences” and “closed-off locations and inner worlds” (2006:423). Even if the residents were be able to remember the

information that I asked for, they were not always able to communicate in a way that I could understand. Many residents had a speech impediment and therefore spoke incoherently. This trouble with speaking and with remembering certain bits of information, was why I had to rely on something next to conversations, namely ‘relating to one another’.

In order to relate to people, one needs to spend a certain amount of time with them. I have spent eleven weeks in the care home and went there four to five days a week for about six to eight hours a day. I noticed that the care workers and the family members began to tell more at the end of my research period and that I began to understand ‘life in the Herbergier’ better in the last few weeks. Hirschauer also argues that time in the field is valuable, because more time gives the field more “opportunities to ‘‘inscribe’’ itself into researchers and authors” (ibid.:437). Spending time in the care home gave me the chance to get to know the residents and to turn this ‘getting to know each other’ into ‘relating to each other’. After a while, I knew certain activities they liked and could invite them for that (such as feeding the ducks in the pond nearby). I knew which spreads they preferred on their sandwiches and which music they liked to hear. I knew the names of their family members and asked about them. Knowing certain things made it easier to get along with the residents, because they did not have to explain everything to me. It took some time to get to know the residents and I know some better than others. But it was the best way to gather information, since interviewing made them confused and insecure. Being there for them, listening to their jokes, stories or complaints, made it that they appreciated my company instead of being bothered by my presence.

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16 psychiatric unit. She writes that researchers tend to speak problematic about having psychiatric patients as respondents, while nurses work with such patients on a daily basis. By trial and error or with help from the patient’s family, the care workers seem to know quite well what a person likes or dislikes. Pols argues that “patients enact appreciations, making known what they like or dislike, by verbal or nonverbal means in a given material environment, in situations that are co-produced by others” (Pols 2005:203). By observing appreciations, researchers can get to know the silent patients just as the nurses do. Appreciations can be enacted in different ways, such as facial expressions, gestures or other movements such as pushing away a plate of food or sitting in a certain spot in the living room (McColgan 2005). That is why there can be spoken of patient positions instead of perspectives, since language is needed to express a perspective but a body can be positioned (Pols 2005:216). Thus the position of the residents who do not speak (coherently) can be found through paying attention to non-verbal communication (Hendriks 2012; Kontos 2005; Pols 2005).

With Pols’ approach, I could observe certain appreciations instead of asking about them.

Unfortunately, with this approach I cannot be sure if I interpreted enactments in the way they were meant. I tried to solve this problem by asking the care workers about events that happened and how they interpreted it, if I was unsure about it. However, most of the time, I felt that I understood the residents quite well, because I tried to relate to them and spent time and effort on understanding their positions.

The following example shows what I mean by paying attention to the enactment of appreciations instead of purely focussing on the verbal.

Example

A young care worker spoke to Mrs Schulten (a resident) after Mrs Schulten refused to do something: “You are stubborn today!”4. Mrs Schulten responded: “Well excuse me, I am 76!”. Mrs Schulten is not 76 years old, she is 88. So if you would listen to her words only, you would not take her serious since she is wrong about her age. But from her intonation and the indignant look on her face, I seemed to see that she did not appreciate how this young woman was talking to her; an older lady. The care worker was being impolite, in using the word ‘je’ and saying that she was being stubborn. The care worker however, did not see Mrs Schulten’s face and answered that she is not 76 years old, but that she is 88. She only responded to the words that the resident spoke and to not the meaning behind it.

(Data from 16-02-2016)

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Dutch has an informal and a formal way of saying ‘you’. The care worker used the informal word ‘je’, instead of the formal word ‘u’ that is commonly used when speaking to elderly.

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17 This example shows several things. First of all, the care worker did not see the facial expression of Mrs Schulten and therefore missed that Mrs Schulten looked indignant. Secondly, the care worker did not pay attention to Mrs Schulten’s tone of voice, that also showed that she did not appreciate her comment. Thirdly, the care worker (and I) knew that Mrs Schulten appreciates a certain amount of respect, more than some of the other residents. This is the reason why Mrs Schulten is called by her surname and not her first name. So the words she spoke (“I am 76!”) were factually incorrect, but together with her facial expression, intonation and some knowledge about her as a person, I saw a woman who did not appreciate to be treated this way by a younger person.

A researcher that works in other cultures or countries than his/her own, mostly needs an interpreter to understand their respondents’ words and the meaning behind those words. One could argue that a researcher in a dementia care setting also needs an interpreter, but those do not exist. I think, however, that with time and effort, the researcher can learn to understand the respondents (as far as they understand themselves) by relating to them and by paying attention to their enactments of appreciations.

Because I had to adjust my methods according to the situation and the person that I was interacting with, I will make use of ‘methodology boxes’ in this thesis. In these boxes, I explain why I made a certain decision.

Recording and transcribing

Before starting my research, I planned to audio-record the conversations with the residents. This did not work out as planned. The conversations that I taped, are not understandable without its context, since the recordings are just a “snapshot” (Hirschauer 2006:420) of the entire context and not logical on their own.

Also, I could not get informed consent for recording from the residents, because they did not seem to understand what I meant or did not remember the conversation we had. Therefore, I felt uncomfortable about recording and stopped doing it. They understood it better when I was writing conversations down, because they agreed that I would forget it otherwise. So instead of recording, I wrote down conversation as accurate as possible immediately after or during the conversation. I will not use the recordings in this thesis, except for the following example, to show how ‘out of context’ it is when it is transcribed and put into a thesis. The example is the (translated) transcription of 1 minute audio recording with a resident with whom I was sitting in her room.

Example

“The [boelen] are closed, hè… ooohh (moan) and that on a Sunday, oh there you have the whole [bulle] with it, in between there are all occupied. All the help fits for you and your brother maybe but

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18 I ordered it all for you. Hèèè (sigh) my dad, it is over now with him. (cheerfully humming for 10

seconds). (With a serious voice again:) look, they are also doing it. Oh do they have enough, do they

arrive this morning? You have a chance. There is one standing with a red one. (high voice:) this is.. uh.. flowers.” (Data from 14-03-2016)

This transcription, which is even more vague when translated into English, shows that it is strange to capture words and behaviours that are so fluid and changing into something so solid as words on paper. The words do not exist (between [ ] ), are said in a different intonation (in italics) and the sentences do not ‘fit’ together, nor describe current events.

This kind of transcriptions are not useful to write down in the rest of my thesis. Some residents spoke in a way that will be understandable when using thick description (as the example of Mrs Schulten earlier). But for describing other residents, I will use data compilations with data from several moments in time.

Putting it into words

Putting into words what I heard, saw and experienced was sometimes a challenge. However, it is the ethnographers job to put into words what is not yet in words, because “[ethnographers] are dealing with those aspects of social reality to which participants’ verbalizations can offer no access”

(Hirschauer 2006:423). In the case of respondents with dementia, it was my task to understand them as good as possible in order to write down their positions. It is the ethnographers job to put social facts into words via (thick) description (Hirschauer 2006). This means that I was my own research instrument, which leads to “a frightening amount of freedom”(ibid.:423). I felt this fright when writing this thesis, because I had to interpret what the residents had said and enacted and I do not want misinterpretations because of my writing style.

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3. The research location

In this chapter I will go into more detail on the care philosophy (and its limits) of the Herbergier and how it is envisioned by the Herbergier where I did my research. I will show how the zorgondernemers see the risk of the open doors as a normal part of daily life and how the open-door policy is about the

idea of freedom.

3.1 Field site description

The Herbergier where I did my research is located in a semi-urban area in the Netherlands. The zorgondernemers are a married couple (husband Bram and wife Lea) who live in the front part of the building. There are seventeen residents living in the care home. The age of the residents ranges between 59 and 90 years old. Thirteen of them are women and four are men. The residents come from the city where the Herbergier is located or surrounding cities. The residents have very different backgrounds, ranging from a farmer, to a baker’s wife, to an university professor. At the time of my research, there were around 140 people on the interest list of this Herbergier.

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20 The map shows the ground floor of the care home, to give an impression of how the building is divided and furnished. One enters the lot via the bridge that connects the main road with the property of the care home. The bridge is the only entrance or exit of the property. This gate is now drawn as if it is closed, but it is usually open. One walks past a small parking lot of around five parking spaces before entering the building via the front door. The front door is unlocked; everyone can enter the building. However, people who visit for the first time do not know this and ring the bell, after which a care worker opens the door and welcomes them. Behind the front door is a small hallway, and the corridor starts after going through the second door. This corridor leads to the living room on the right and to the residents’ rooms (pink) with private bathroom (light yellow), laundry room (purple), toilets (yellow) and elevator (dark blue). The corridor also has two staircases, one at the front door and one at the back door.

The living room has an open kitchen and two “stock rooms”. The one on the bottom of the map (dark

green), is where the care workers keep their belongings (coat, handbag), where they keep the

medication, documents about the residents and food supply. This room is supposed to be locked, but it happened many times that the door was left open, or that the key was still inside the lock and thus easy to open. The small room on the top of the map (light green) is were attributes such as balls, an interactive television screen, etc. are stored.

The living room is a big rectangle without separating walls or ‘hiding corners’. This made it hard for the zorgondernemers to find a suitable arrangement for the furniture to create a cosy, but practical environment. The living room is split up in four parts by the way the furniture is arranged: the kitchen, the eating area (three big tables), the relaxing area (four armchairs) and the sitting area (couches, coffee table, television). Group activities usually take place in the sitting area, which makes the living room a noisy place at some moments. The idea is that residents can go to their own rooms when they prefer silence or want to rest and come to the living room when they want social contact and activities. The residents can leave the doors of their room locked or unlocked as they like, and the people who lock their doors carry their keys on a key cord around their neck. The care workers have a master key that opens every door in the care home (except the door that leads to the zorgondernemers’ house).

The living room has three doors that lead to the path around the building and the backyard. These doors are sometimes locked, but can be opened from the inside. The back door at the end of the corridor is also locked in this way, but is out of sight of the care workers. That is why there is a bell that rings in the living room when the back door is opened, as an indicator that someone is leaving.

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21 The first floor consists of nine rooms and a small sitting area in the corridor (one armchair and a coffee table) and can be entered via the two stairs and the elevator.

3.2 The Herbergier as community

The care home, its residents, the family, the volunteers and some locals (buurtbewoners) form a community together. Family and volunteers are encouraged to join and organise activities. During weekdays, there are activities such as making music, listening to music, and physical exercises such as swimming and a gym class. Every day, a small group of care workers and residents goes to the shops to buy the groceries for dinner. Every meal is prepared fresh by the care workers with the help of residents. With lunch and dinner, the residents and care workers (and visiting family and volunteers) eat together. The idea behind eating all together is that ‘zien eten, doet eten’, which means that seeing other people eat increases the appetite. The residents who did not eat by themselves were fed by the care worker next to them. During meals and also during the rest of the day, some people had their regular spots to sit. For example Mr Kuijpers enjoyed sitting at one of the two separate chairs in the living room, so he could hear everything that was happening in the ‘sitting area’, but did not have to join the conversation or activities that were going on.

As said before, the families of the residents are also part of the community. The zorgondernemers value the role of the family and try to include them in activities. For example, the daughter of two residents (a married couple) gives a gym class every Wednesday morning and the husband of Mrs de Lange (who visits her almost on a daily basis) joins every Wednesday for the music class.

Another way of including the family into the community, is by letting the family members help each other. Some of the family members were dealing with dementia for a longer time, and gave

information or support to the ‘newer’ families. Not every family was interested in much contact with the other families, but some seemed to really appreciate it.

The neighbours and other locals (buurtbewoners) also help with making the open-door policy possible. When the neighbourhood got informed that the Herbergier would be built there, not everyone was happy about this. Later on, the locals seemed to be fine with it and some were of great help when residents got lost (Care worker Jannie 12-02-2016).

An example that shows the community-feeling of the care home is the ritual that took place when one of the residents (Mrs Buitendijk) passed away. The zorgondernemers put a photograph of the deceased person on a small table in the living room, together with flowers and the funeral card. On the day of the funeral, all the residents, working care workers and interested care workers (who join voluntarily on their day-off) made two lines to form a path from the inside of the care home to the funeral car. The coffin was carried over the doorstep, and stopped there. Zorgondernemer Lea gave a

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22 short speech and opened with “Today Mrs Buitendijk leaves the care home for the last time” (Lea 19-03-2016). It was a beautiful sentence, because Mrs Buitendijk tried to leave the care home a lot and she kept fighting her disease until the end of her life.

3.3 The care philosophy and its limits

Every Herbergier has to secure the main principles of the parent organisation. This way, the care philosophy does not disappear because of the expansion of the organisation. Still, the Herbergier care homes can differ from each other in certain perspectives, because they are managed by different people. As mentioned in the Introduction, the Herbergier aims to create a homely atmosphere and a safe environment where the residents can live their life how they want it (De Herbergier, n.d.). The main goal of the Herbergier, is therefore providing a “good old day” for its residents (Bram 05-04-2016). Important principles of the Herbergier are the use of no sedative medication, to take up as less time as possible with paperwork, and the open-door policy (De Herbergier, n.d.). With these principles, the Herbergier tries to differentiate itself from regular care homes.

In order to maintain the Herbergier philosophy, zorgondernemer Bram looks for certain qualities in his staff. The zorgondernemers particularly look for hospitality, care with “your hands on your back” and collegiality. Care with “your hand on your back” means that the care workers should not intervene right away and let the residents solve problems or challenges themselves (Bram 05-04-2016). This requires patience, because certain things would be done much quicker if the care worker did it instead of the resident. With this kind of care, the zorgondernemers strive to enhance the autonomy of the residents, as they are encouraged to do things in their own way.

Also, Bram hires people from different educational backgrounds, and some of them have no education in health care. He prefers this, because staff members with an health care education are sometimes “stuck” in the ways of caring that they learned during their study. Bram likes to “sculpt” his staff into the way of caring that he wants to see in the Herbergier (Bram 05-04-2016).

The general care philosophy is maintained as much as possible in the Herbergier where I conducted my fieldwork. However, some parts of the philosophy are not easy to achieve in the daily reality of a dementia care home. For example, the principle of having no meetings and as less bureaucratic practices as possible, is hard to maintain. The staff has no office and no computer, only a binder in which they keep track of the residents’ condition. As I was told by care workers with work-experience in other care facilities, this makes that there is indeed less paper work and more time for care tasks then in regular care homes. The care workers have very little space to write in the shift handover forms, so they can only write down the most necessary information. As care worker Marja put it:

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23 “When you write down the shift handover, ask yourself: will it be read? And what can your

colleagues [after reading it] do with it?” (Marja 06-04-2016). However, the zorgondernemers told me that more meetings are ‘sneaking in’, because informing everyone via e-mail or face-to-face is not always working with a staff of thirty people.

The fact that the care workers do not have an office, also means that they have no place to retreat or take a break. The care workers drink coffee with the residents when there is time and they eat during the mealtimes, together with the residents. Meetings are held in the house of the zorgondernemers or the room of one of the residents, as there is no office space.

The value of no sedative medication is not always maintained in reality, but it is kept as low as possible. Sometimes residents need to take some sedatives in order to protect themselves and the persons around them. A care worker told me that she feels that the Herbergier is too ‘harsh’ against sedatives and pain killers, because it could also make life more bearable for some residents. In another Herbergier, a resident had to leave the care home, because (s)he was too hard to handle and did not become more relaxed after living in the Herbergier for a while (as their philosophy states). This person had to move to another care home (2Doc 28-10-2015). Also, I overheard the husband of Mrs De Lange tell her [his wife] that she had to take her sedative medication, or she could no longer live here [the Herbergier].

The principle of the open doors means that residents are able to go outside (to the shops, to a nearby park, etc.). However, not every resident can find his/her way back. In previous years, the care home had residents who went outside alone or did their own groceries. But at the time of my research, none of the residents was able to find his/her way back and the care workers needed to follow them outside when they left the building. In the daily reality of a care home, it is not always possible to follow the residents on every walk they take. Besides, the residents who left the building the most, Mrs De Lange and Mrs Wijnaart, usually left the building in an agitated state. Many times, the care workers thus tried to guide them back inside to calm them down. But whenever there was time and enough staff to go outside for walks, this was done right away. The two youngest residents, would have been able to go outside alone. However, they always patiently waited until a care worker or family member joined them.

The principles of the Herbergier all relate to one another and enhance each other and the overall philosophy. The idea behind the open doors is to create an atmosphere in which the residents do not feel imprisoned or institutionalised, but at home. The non-bureaucracy principle results in extra time for the care workers to spend on the residents and (together with the fact that there are more staff members per shift than in regular care) this creates an easy going, non-rushed atmosphere. This atmosphere, together with the open doors, should make residents feel comfortable and relaxed, and

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24 should thus lead to a decrease of sedative medication. So instead of the biomedical approach that some other care homes use (sedating persons with ‘challenging behaviour’), the Herbergier works more in line with Kitwood and tries to see symptoms not as part of the pathology, but as part of the social environment. Wandering is accepted and even encouraged by opening the doors and residents who are anxious get comforted or distracted from their anxiety with tasks or activities.

The PGB budgets and retirement funds of the residents make sure that the Herbergier has the money to hire enough staff in order to create this non-rushed atmosphere. Also, the Herbergier hires

relatively low educated staff and has many interns, which reduces personnel costs.

3.4 Envisioning the open doors

So the principles of the Herbergier care philosophy should, in theory, work together to make the open-door policy possible and the open-door policy should enhance other principles at the same time. A discussion point of the open-door policy that the zorgondernemers encounter in

conversations with other care homes, is about the tension between freedom and risk. How is this tension seen by the zorgondernemers, care workers and family members of the residents? In a conversation with zorgondernemer Bram, he explained to me how he sees the risk of the open-doors compared to other risks in the care home.

Risk and the idea of freedom

I asked zorgondernemer Bram about the risk of the open-door policy and the inspections of the IGZ (Inspections of Health Care, a part of the ministry of Public Health, Well-being and Sports), because I saw an inspection rapport from another Herbergier that showed safety issues (IGZ Instellingsrapport 17-07-2017). Bram answered: “People from the inspection are weird people, really weird” and he explained how his logic is different than the inspection’s logic. “When I see the stairs in the corridor, I think: yes, that is dangerous because Ellen [a resident] fell down the stairs one day. So when Ellen starts wandering, we close the corridor doors. If the inspection sees the stairs, they would tell me to build a fence around it.(…) That would just be a false sense of safety. You cannot hide everything that might be risky, risks are a part of life.” (Bram 05-04-2016). Bram argues that risks can never be completely taken away from daily life. Many safety precautions give a false sense of security and are there to give the care workers more time to interfere. An example of this false sense of security is the “lock” on the kitchen cabinet where the bleach is stored. This lock prevents the cabinet from being opened far enough to take a bottle of bleach out, but when pulled hard enough, the lock will break. The lock is just there to prevent residents from accidently taking a bottle of bleach and to give the care workers some time to stop them. Another interesting difference between the Herbergier’s vision on safety and the IGZ’s, is that the locks on the bathroom doors in the residents’ rooms are

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25 perceived as unsafe by the IGZ (IGZ instellingsrapport 17-07-2015). Apparently, not only openness is seen as risky, but also the possibility for residents to lock a door.

When I asked a care worker if residents ever got lost in the past, she replied: “Oh, quite often. But we always notice within, I think, 15 minutes that they are gone and we just get on our bikes and search for them” (Jannie 12-02-1016). The risk of the open doors (i.e. residents getting lost) is not perceived as entirely dangerous, but still the care workers avoid the residents from exiting the property as much as possible. “You know that there is a possibility that residents get lost, you just don’t want that to happen during your shift” (Jannie 12-02-2016).

The family of the residents is informed about the open-door policy and has to understand that it includes certain risks such as getting lost. However, the open doors are one of the reasons why the families choose the Herbergier as care home for their loved one. I asked Mr De Lange (the husband of Mrs De Lange, one of the residents who tries to leave the care home frequently) about this. He told me that, even when Mrs De Lange still lived at home, she would frequently go out for walks and be gone for a while, so Mr De Lange is not too concerned about the open doors of the care home. He continues by telling that they [he and his wife] also visited other care homes, but that those homes had locked doors. There, his wife started trying to open doors and windows immediately, in order to go home to her husband. During her time in the Herbergier (she has been living there for 2 years now) she walked away frequently and she also got lost and was found with hypothermia. The geriatrician tried to solve Mrs De Lange’s ‘walking away problem’ with prohibiting her husband to visit her on a daily basis, so Mrs De Lange would get the chance to learn to feel at home in the Herbergier. Mrs De Lange kept walking away and asking (or screaming) about her husband just as much as before, so zorgondernemer Bram told Mr De Lange that he could visit her again as much as he wants. Now, Mrs De Lange still tries to leave the care home on a frequent basis but is also taking some sedative medication (Data from conversations on 01-04-2016 and 07-04-2016).

So the zorgondernemers do not see the open doors as something particularly risky compared to other risks in the care home, such as the stairs or falling in general. As the stairs example shows, the zorgondernemers rather keep an eye on residents who are at risk of falling, than putting a fence around the staircase. Also the husband of one of the residents does not seem to be too concerned about the open doors. He knows that his wife is at risk, because she leaves the care home often, but he seems to value her freedom over the risks that something bad might happen to her outside. Bram concludes in our conversation about the open doors, that it is all about the idea of freedom. The idea of being able to go, should prevent residents from trying to escape the building. “When a resident wants to go, you say “okay, go”.” (Bram 05-04-2016). The idea behind this is that it should support the resident in taking decisions and thus enhance his/her autonomy.

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26 The accidents that I saw in the time of my research, had nothing to do with the open doors. For example, Mr Kuijpers got wounded because he fell out of his bed and Marie broke her hip because she tripped and fell in the corridor.

Conclusion

The idea of freedom, the community of the Herbergier and its atmosphere, are supposed to make the residents want to be inside. But when a resident wants to go outside, the care home has enough staff to make sure that this is seen and that a staff member or volunteer can join the resident on her walk. In the past, residents who were able to find their way back were allowed to go outside on their own. However, the current residents of the care home are not able to find their way back and thus need supervision to return safely at home. Going outside is seen as part of a normal daily life and therefore not perceived as extra risky

Looking back at Clark’s (2000) domains of risk mentioned in the Introduction, the Herbergier seems to find the biographical risk that comes with locking people up more risky than the physical risk (like falling or getting lost) that comes with opening up the doors. And Mr De Lange seems to value his wife’s freedom over the interpersonal risk of losing his loved one if she gets lost or harmed outside. But how is the principle of the open-door policy put into in practice? The next two chapters will go into more detail about what happens when the doors are open.

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4. Interactions with open doors

The open doors are meant to give the residents the possibility to go outside if they want fresh air or stretch their legs. Most residents of the Herbergier, from the present and the past, seem to be fine with enjoying the garden in summer and walking the path around the building. The Herbergier has flowers, chickens and rabbits in the garden for residents who enjoy to spend time on gardening or like to be with animals. Some residents, on the other hand, do not stay in the garden, but go home or to a loved one. At the time of my research, there were two “runaways” (Lucero 2002). These two women could get very upset due to different reasons and would then try to leave the care home. But as contrast, I will also show the cases of other residents, who use the doors in different ways than the way of escaping the building. What the resident wants influences her5 door interactions and also the reactions of the care workers.

4.1 Wanting

As written in the Introduction, I use the term autonomy as focussed on the daily wanting (as defined by Driessen fc.:6) of the residents and not the long-term decision processes that are normally involved when using the term ‘autonomy’. Wanting something can be seen as an expression of subjectivity (ibid.3), so the Herbergier tries to respect this wanting in order to strengthen the autonomy of the residents. Wanting unfolds daily in “sociomaterial interaction” (ibid.:6). The ’wanting to go outside’ needs a unlocked door to be turned into ‘going outside’. Also, the residents and the care workers need to agree on the ‘going outside’, otherwise the ‘going outside’ turns into escaping, since supervision is required when a resident wants to leave the property. At the same time, the residents are not supposed to have the feeling that the care workers are trying to lock them inside.

Wanting is not only done in a sociomaterial way (as in the use of doors and the interactions with care workers around the doors), but also expressed in a sociomaterial way and can thus be observed. One of the most apparent signs that a resident is planning to leave, is when she puts on her coat. But wearing a coat can also confuse the residents. One of the residents, Mrs Paagman, came back from grocery shopping one day and walked to her room to hang up her coat. She came back with the coat in her hand and a confused look on her face. She saw me (I was still wearing my coat) and put hers back on, as if she forgot that she just arrived and was going to take it off.

Another sign of wanting to leave, is when residents pack their bag or gather stuff to take with them.

5

From here on, I use the female pronoun, because during my field work only female residents interacted with the doors. The male residents were not interested in going outside and not mobile enough to do so.

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28 Mrs Wijnaart would usually grab her purse and take some (random) belongings with her such as pillows and an empty pencil case when she was planning to go away.

The ‘wanting to go’ is also expressed verbally, by those who can. Repeatedly saying that one is going to leave or going home is very common. This gives care workers the chance to make the time to join the resident outside, or to convince the resident to stay inside (in the case of ‘escapers’). Verbally expressing the desire to go also seemed to be a sign of distress, or a call for attention. So, wanting to go in itself can be seen as an enactment of an appreciation, or in most cases a depreciation. The residents do not always go outside to just take a walk, some try to run away from the care home because they do not agree with living there or because they miss a loved one. Examples of this will be shown in the next paragraph.

4.2 The door interactions

This paragraph will discuss how the residents interact with doors. It will start with the narrative of Mrs Wijnaart, who wants to go away. Then, Mrs De Lange wants to go out but cannot open the door. After these parts on ‘wanting’ to go, the examples will focus on how the residents put their wanting into action by interacting with the doors. However, the examples are not all about wanting to go outside, but also about just opening and closing a door without going out or even wanting to stay inside.

Methodology box 1

I gathered the door practices and door narratives by either walking with residents or following them around in the building. For example Mrs Wijnaart was usually in a bad mood when she expressed that she wanted to leave. When she was agitated, I observed her walking around the building from a distance. But at most moments, going to her and asking what was wrong was the best way to get information. One day I was sitting in a chair on the first floor, while she was pacing in the hallway and cursing. Then she sat down next to me and started telling her story without me having to ask.

Other residents, like Marie and Mrs De Lange, usually invited me to walk with them by taking my hand. It was not uncommon that Mrs De Lange would (whisperingly) ask me if I wanted to come with her. She would then either take me to her room or take me outside.

Mrs Wijnaart and Mrs De Lange

For Mrs Wijnaart and Mrs de Lange, a door is a way to get out of the care home. Lucero (2002) writes about different types of wanderers, and one of them is the “runaway” (2002:278). A “runaway” is a resident who does not agree with living in a care home or are confused about it. The reasons why

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29 Mrs Wijnaart and Mrs De Lange want to leave are different, but they definitely try to run off. Mrs Wijnaart can voice quite well why she wants to leave. I will show her case to illustrate the reasons why she is trying to get out of the care home.

Mrs Wijnaart’s narrative

I am drinking coffee with Tanja (a resident), Mrs Schulten and one of the cleaning ladies of the care home. After a while, I overhear care worker Kimberley say to a colleague that Mrs Wijnaart needs to be watched because she gathered some of her belongings and announced that she was leaving. Mrs Wijnaart comes into the living room, clearly upset, and she says that she wants to go: “[curses], I am out of here”. She puts what she is carrying (handbag, bathrobe, blanket and two pillows) on a chair and sits down on the chair next to it. Some people in the living room laugh about a conversation they are having, but Mrs Wijnaart seems to think that they laugh about her, so she takes her stuff and paces into the corridor: ‘’Everything is gone, I will also go.. forever!”. In the corridor, she passes Ellen and tries to hit her with the pillow, but Ellen does not seem to notice it. Mrs Wijnaart proceeds to walk circles through the building by going upstairs at the back of the building and coming downstairs via the other staircase. I watch this for a while with care worker Marja. Mrs Wijnaart comes to us and continues to curse, so Marja tells her very seriously that cursing is not accepted here [in the care home] and then tells me that it might help to take Mrs Wijnaart to her room, so she can be

surrounded by her own, familiar furniture and belongings (spulletjes). I walk up to Mrs Wijnaart, who is now trying to open the back door, but it seems to be locked. She says that she is leaving forever, and I ask her where she is going. She answers that it does not matter, that there are enough places for her to go to. The cleaning lady of the care home comes over to us and tries to distract Mrs Wijnaart from her mood by asking her about her new carpet. Mrs Wijnaart does not react to her and walks up the stairs. I follow her and sit down in the corridor upstairs, while Mrs Wijnaart goes

downstairs and comes upstairs again. Then, she sits down on the coffee table next to me and starts to tell me what is wrong. Apparently, a boy came to her house and took her belongings away from her; not only her own stuff, but also things that she made together with her father. When she talks about her father, she starts to cry. Because people took her stuff, Mrs Wijnaart feels that it would be better to get out of this place, and go home. When I ask her where she can go, she says that she does not know. I suggest to go to her son, but she answers that he is always too busy to look after her. She keeps saying that she does not know what happened and who did it, but that someone took her stuff away from her. I suggest that we could lock her door, but she answers that it is of no use, because they will get inside anyway. (Data from 07-03-2016)

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30 I am not sure if Mrs Wijnaart was imagining this person who took her belongings or if she had bad memories that ‘got to the surface’ and made her upset. So I do not know if the story she tells me really happened. What matters is that it is real to her and it makes her upset, and thus has real consequences: she wants to go away. With an open-door policy, the wanting of Mrs Wijnaart can be turned into ‘doing’, as there are no locks to prevent Mrs Wijnaart from going outside. This means that her expressions of wanting to go outside need to be taken seriously, because they can lead to action. In a care home with locked doors, these kind of expressions will just stay expressions of wanting, and not become an action. A care home with an open-door policy therefore requires a different kind of care, as a way of replacing the locked door. In this case, comforting Mrs Wijnaart replaces the locks.

Mrs De Lange’s door interactions

We are back in the living room and Mrs De Lange finished reading her newspaper. She gives it to me and says “Thank you, see you next week!” while she walks to the back door. She tries to turn the lock to unlock the door, but she is turning the wrong one. I ask if she wants to go outside and she answers that the door is not opening. I tell Mrs De Lange that she is twisting the wrong knob, but she does not seem to hear me. Then I tell her that she should perhaps put a coat on before going into the cold weather. Eventually, she stops trying to open the door and walks away, back to the couch.

Methodology box 2

At this moment , I was trying to prevent people from going outside. It was the end of February, so the weather was bad and even with jacket, scarf, and hat, residents would complain about the cold. Mrs De Lange was not wearing a jacket nor a scarf during her attempt to go outside, so I decided to tell her that it is cold and she might need a jacket, as a way of preventing her from going outside. Also, Mrs De Lange was on a small amount of sedative medication, which makes her more confused and less able to speak her mind. This made it hard for me to understand exactly why she wants to leave. When I asked her, I saw her struggling to find words and usually she would answer to my questions or statements with agreeing or disagreeing sounds and facial expressions.

A few moments later, she is standing in front of the other door to the backyard, and tries to open it. Again, she cannot manage to open it (this door is slightly complicated to open. I also could not open it at my first attempt because you need to lift the door handle up first). This time, Mrs De Lange starts to panic. “It’s not working!” she yells. I decide to not react and just observe her from a distance. She opens the curtains that are hanging in front of the window and partly in front of the door and asks

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“Why are you not coming?”. Then she turns around and yells “Miss, miss!” at me with a scared look on her face. I go to her and suggest to take the front door instead of this door, because that one is open. She walks with me to the hallway and while we walk I convince her to get a coat from her room. (Data from 18-02-2016)

This vignette shows what happens when Mrs De Lange was unable to open the door and thought it was locked. She panicked , and like Wigg states in her article (2010), seemed to get anxious from thought of being locked inside. The door was indeed locked, but could be opened by twisting the lock to the right. Mrs De Lange was twisting another knob on the door and was therefore unable to open it. In this case, Mrs De Lange’s ‘wanting to go outside’ could not be turned into actually going without the help from others.

The following example shows a moment where we went outside together and where she showed me where she wanted to go.

I am in the corridor and Mrs De Lange beckons me to come over, so I walk towards her. She whispers: “Come with me”, takes my hand and together we walk towards the front door. Mrs De Lange opens the hallway door and care worker Manouk comes to check on her. Then she sees that I am with her, so she goes back into the living room. Mrs De Lange opens the front door and we walk to the back yard via the path around the building. She leads me around the house by holding my hand and we turn around the corner. When Mrs De Lange sees the main road, she point at it and says: “There! There it is!”. I tell her that I am not from this area and ask her where that road leads to. Mrs De Lange nods understandingly and tells me that she also does not know, but that we have to go there. (Data

from 13-04-2016)

This vignette shows what happened when Mrs De Lange asked me to go outside. It was clear that Mrs De Lange wanted to go to the main road. She walked fast and determined, even though she did not seem to know where the road leads to. Because the door was unlocked and the gate was open, Mrs De Lange could turn her wanting into doing. After a while, I had to guide her back to the care home with an excuse, because it was almost lunch time.

The following vignette is another example of a walk with Mrs De Lange and how she reacted differently every time I wanted to go inside again.

I walk away from helping the care workers to write down my walk with Mrs De Lange, when suddenly I see her pacing to the door and going outside again without a sign of hesitation. I follow her and in the living room I hear a care worker yell that Mrs De Lange left the building, but an intern answers that she saw me going after her. Mrs De Lange is walking fast and looks more confident and fit than she does inside the building. I need to run a bit to catch up with her. While I run, I decide that I will