Abstract
An increasing number of people with dementia are ageing at home in Sweden and in other countries. In order to meet the safety requirements, knowledge about how persons with dementia experience risks is required. The aim of the study was to explore and better understand how persons with dementia, living at home, experience risks in their daily life and how they handle these situations. Twelve persons with dementia were interviewed using open-ended questions, and the data were analyzed using a content analysis approach. Findings showed that participants experienced situations fraught with risks in their daily life as unfamiliar and confusing. Previously familiar places became unfamiliar to them, and details did not come together. They were uncertain about what actually had happened. How the participants handled these situations in order to reduce the risks are described.
Background
In Sweden today, there is an increase in the number of people who live at home with dementia (Socialstyrelsen, 2014), as is also the case worldwide (Prince et al., 2013). In the literature, several studies describe risks that people living at home are facing (Gilmour, 2004; Gitlin & Corcoran, 2000; Lach & Chang, 2007; Lach, Reed, Smith, & Carr, 1995). For example, one study showed that the main areas of risk were related to heating and cooking, to falling, to getting lost and to managing money (Gilmour, Gibson, & Campbell, 2003). Other studies have, instead of studying the variety of risks, focused on a specific risk, such as driving (Hunt, Brown, & Gilman, 2010) or wandering around (Robinson et al., 2007). Most of the studies focusing on risks among people with dementia are taken on an outside perspective. This means that the perspectives of persons living with dementia are not taken into account and are not sufficiently well documented in the research.
Still, there are some qualitative studies on this topic that take on the perspective of the person with dementia. In one of these studies where persons with a moderate degree of dementia were interviewed, the participants did not show any concerns at all about risks (Gilmour et al., 2003). In comparison, in another study, participants with mild to moderate dementia expressed that they had experienced risks, for example, that they had forgotten to turn off the cooker at home (De Witt, Ploeg, & Black, 2010). These divergent views show that risk can be experienced in different ways. However, it is important to note that the numbers of participants in qualitative studies are often few and that more studies are needed to describe experiences from people with dementia. Even if few studies have focused on how people with dementia experience risks in their daily life, descriptions regarding risk can be found to some extent in the literature – since risk is a part of life (Clare, 2002; De Witt, Ploeg, & Black, 2009). Few studies have, as the present, chosen the starting point for the interview questions in tangible lived situations and activities from the daily life of the person with dementia. However, one study by Brorsson, Öhman, Cutchin and Nygård (2013) investigated how people with Alzheimer’s disease managed grocery shopping, but instead of using the word risk, referred to ‘critical incidents’.
There are several studies that consider how people with dementia handle various situations. Some focus on a specific area, such as the ability to manage technology (Rosenberg, Kottorp, Winblad, & Nygård, 2009), while others describe how to manage life in general when it has changed due to dementia (Clare, 2002; De Witt et al., 2010; Harris, 2006; Nygård, 2004). Even though these studies did not specifically study risk, they dealt with the handling of situations fraught with some extent of risk. One study outlined how people with dementia did their best to use coping strategies when they did not feel safe (Harris, 2006). Examples of how people with dementia living at home handled situations fraught with risk were: using social support networks (Harris, 2006), relying on a partner (Clare, 2002) or using assistive technologies (Harris, 2006). They also refrained from situations in order to avoid risks, for example, it was experienced as safer to stay at home than to go out. Persons withdrew from activities they previously had enjoyed, since they found it safer to remain at home. Refraining from activities left a void in their lives (Harris, 2006). For example, no longer being able to drive a car resulted in feeling ‘closed in’ (De Witt et al., 2010). However, there are also descriptions of people with dementia who express awareness of risks, but at the same time willingness to tolerate them (Harris, 2006).
The concept of risk is understood and defined in various ways (Althaus, 2005). Clarke et al. (2009, p. 90) write that it consists at its heart of ‘issues of uncertainty of future outcomes from actions’. Work by Douglas (1994) highlights that risks are culturally embedded, which implies that the meaning of risk is dependent on the context. Since this study explores how individuals with different experiences and knowledge experience risks in their lives, we have chosen to use a wide definition based upon the quote above from Clarke et al. (2009). This means that risks are to be understood through the participants’ own descriptions of situations fraught with risk. However, the concept of risk was limited by focusing on the negative outcomes of various situations as opposed to viewing risk occurring by chance or opportunity.
Risks are of concern not only for the individual with dementia, but also for family, friends, neighbours, and people who provide home services. People, who are close to persons with dementia, often have to face ethical dilemmas as they must balance the need to reduce the undesirable risks and, at the same time, consider the quality of life and self-determination for the individual (Clarke et al., 2009). In order to better understand the conditions for persons with dementia, it is of significance to share their descriptions of experiences. Harris (2002) points out the importance of listening to those with dementia since they are ‘experts’ on their own desires. One research group stated that ‘It is important that researchers use the views and experiences of people with dementia as “knowledge”’ (Scottish Dementia Working Group Research Sub-Group, UK, 2014, p. 682). The importance of studying experiences of people with dementia in relation to risk is also underlined by the knowledge that people do not always ‘respond’ logical and rational to risk (Jasanoff, 1993). This means that a person does not always respond in a way that may seem appropriate from an outside perspective. When it comes to healthcare workers, they must be careful to not discredit stories from persons with dementia just because they may not seem in line with the workers’ own understanding (Parsons-Suhl, Johnson, McCann, & Solberg, 2008).
In summary, society faces major challenges in meeting the needs of the growing number of people with dementia who live at home. By sharing experiences of living with risk among persons with dementia, professional practice can be improved (Clarke, 2000). Considering our current state of knowledge, there is a knowledge gap about how people with dementia experience and handle situations fraught with risk in their daily lives. Therefore, the aim of this study is to explore and better understand how people with dementia, living at home, experience risks in their daily life and how they handle these situations.
Design and method
This study is based on a qualitative approach, since the aim is to share the experiences of persons with dementia (Creswell, 2000).
Research context and participants
Twelve participants were included from a memory investigation clinic in Stockholm, Sweden where individuals are diagnosed, treated and also provided with guidance and support. The inclusion criteria were: (a) that they had been diagnosed with mild to moderate degree of dementia; (b) that they could communicate in Swedish and (c) that they lived in their own home.
The persons who met the criteria received both written and verbal information about the study from an admission nurse at the clinic. They were also asked if the first author could contact them. The persons who agreed to be contacted received additional information about the study and what participation involved and were asked if they agreed to participate.
The concept of purposeful sampling (Patton, 2002) was applied in the study in order to achieve variation in the participants’ gender, age and to ensure that both participants who were living alone and who were cohabiting were included. The reason for this was to include individuals with varying experiences regarding situations fraught with risk. Four individuals, who fulfilled the criteria, were not included as participants. Based on ethical considerations, the reasons for their nonparticipation are not specified here. The inclusion of participants continued until sufficient data were obtained in order to fulfil the aim of the study (Patton, 2002). This process resulted in a total of 12 participants, 6 women and 6 men (67–87 years old). Eight persons cohabited, whilst four lived on their own. All participants lived in apartments except from one who lived in a villa. Five of the participants lived in the city and seven lived in the suburbs of Stockholm. Nine of the participants had been diagnosed with Alzheimer’s disease, two with vascular dementia and one with Lewy body dementia. The participants have been given fictional names in this study.
Ethical considerations
Persons who were invited to participate were informed that all information would be treated confidentially, that participation was voluntary and that they could withdraw their participation at any time without being required to give a reason. They were also informed that the care they received would not be affected by whether or not they participated in the study. Since the participants had a dementia diagnosis, informed consent was obtained with extra sensitivity. This meant that no one was enrolled in the study if they appeared either to have difficulty understanding what was meant by informed consent or expressed discomfort about and/or during the interview process. The first author obtained verbal informed consent both at the initial contact over the phone and before the start of the interview. When additional needs from the participants arose during the visit, the author advised or assisted them in obtaining appropriate support. The implementation of the study was approved by one of the Regional Ethics Committees in Stockholm, Sweden (No. 2008/1612-32 and 2011/1011-32).
Data collection
Data were collected through open-ended interviews (Kvale, 2009). All 12 participants were individually interviewed once. The participants chose a time and place that were convenient for their interviews. This resulted in 11 of the participants being interviewed in their homes, whilst one man preferred to be interviewed at the clinic from which he had been recruited.
The interview guide consisted of open-ended questions in order to enable the participants to narrate their experiences of situations fraught with risk and how these situations were handled in daily life. The interviews started with questions related to whether they had experienced any accidents or incidents in their daily life that could be examples of situations fraught with risk.
Given that the participants had dementia, the interviews were adapted to facilitate their active participation and to increase their possibilities to share their experiences. In order to do so, the participants were, for example, not burdened by time constraints and the questions were tangible and based upon activities in their daily life as recommended by Nygård (2006). One example of such a question was: Please tell me about how you get on when you are cooking? Since the interviewer asked open-ended questions, followup questions were asked based upon the participant’s answers (Creswell, 2000). The open-ended questions paved the way for the interviewer to capture situations that participants described as risky and supplementary questions to be asked. Clarifying questions were also asked, such as What does that mean to you? and Can you tell me more?
A single pilot interview was carried out in order to try out the interview guide (Dahlberg, 1993). Minimal adjustments were then made to the interview guide. Since the pilot interview contained appropriate data, it was included in the study. All the interviews were audio recorded. One interview lasted for only 12 minutes and the other 11 were between 29 and 59 minutes, with an average time of 42 minutes. The length of the interview was dependent upon the specific situation and context. The actual time for the visit was, however, longer, thus allowing for the participant and the interviewer to build trust and to discuss the current study beyond the time for the interview. All the interviews contributed relevant data and were included in the study, which was conducted during the spring and summer of 2011. All the interviews were transcribed verbatim and the text was validated against the audio recordings (Kvale, 2009).
Data analysis
The interview transcripts were analysed in steps using a qualitative content analysis approach (Granheim & Lundman, 2004). Through content analysis, interview data can be analysed in a systematic way (Krippendorff, 2004). Initially in the analytical process, the analysis of the participant’s descriptions was kept close to the interview transcripts. Later in the process, the analysis became more interpretative. Interpretation was used to describe the experienced meaning from the participant’s narratives.
In order to grasp the content from all the data, the recorded material was listened to and then the transcribed interviews were thoroughly read. Thereafter, the text was divided into meaning units (Graneheim & Lundman, 2004). This means that the text was divided according to shifts in the meaning that were found through the analysis, based upon the aim of the study. The meaning units were then condensed, i.e., shortened but still preserving the core. In the next step, the meaning units were labelled with a code, which grasped the included meaning. Thereafter, the codes were compared and grouped into subcategories and categories by analysing differences and similarities between them. However, the analytical process was not carried out in a linear manner through these steps. A constant alternation between the whole and the parts of the transcribed interviews and with respect to the context, characterized the process of analysis. During the analysis, the authors regularly discussed the emerging findings. In the final step, the interpretations resulted in a theme linking the categories together through an underlying but overarching meaning. This theme captured the substantial characteristics of the participants’ experiences of risks in their daily life and how they handled these situations.
Findings
An overview of the study’s theme, categories and subcategories.
Risks in situations that are experienced as unfamiliar and confusing
The theme, ‘Risks in situations that are experienced as unfamiliar and confusing’, emerged when the analysis showed that the persons with dementia described their experiences of risk in situations in their daily lives, which previously were familiar and clear, as unfamiliar and confusing. The unfamiliar and confusing situations were first of all described as incomprehensible. For example, Harry described how taking the underground had become a hazardous situation for him. The risk of getting lost and not getting to the place he wanted was apparent to him. Earlier, he had not experienced any difficulty in going to the places he desired, but now after the onset of dementia, he described how the underground system had become like ‘Greek’ to him, i.e., totally incomprehensible. This formerly familiar situation had become unfamiliar and confusing. Harry felt that he did not know where he was or how to get to where he wanted to go. He described how he, for example, could read the signs on the platform, but that he could no longer understand them. This situation was experienced as posing such a great risk that he was no longer willing to travel unaccompanied, and this resulted in him being unable to get anywhere on his own.
When situations were experienced as unfamiliar and confusing, the participants expressed that these situations were difficult to take on board and comprehend. In the analysis, we found examples of how experiences of not having a sense of familiarity and clarity impacted on the participants. For example, when the participants could not comprehend a situation, some of them described it as, ‘being out of control’, and that they became worried about risks, i.e., that something undesirable could happen. Participants described, for example, managing mail from the bank and mail from different care providers as fraught with risk. Christina showed her disorganised piles of mail on the kitchen table. She expressed that the situation was so bewildering and incomprehensible that things were out of control and she said, ‘when papers like these come in – I just lose control’. Christina explained that she was very worried about the risk of failing to pay her bills and to miss important medical appointments.
The uncertainty in these unfamiliar and confusing situations made it difficult for the participants to understand the situation and to make decisions and thus handle it in order to avoid something undesirable occurring. Participants expressed frustration about being in these uncertain and hazardous situations. For example, Harry expressed the impossibility of knowing how he would manage his annual income tax return. He considered that the risk that he would do something wrong was impending since he did not entirely understand the forms. Harry expressed frustration about how he would be able to handle this incomprehensible and confusing situation and he stated, ‘It’s difficult to make decisions when you don’t understand the background’. Given that situations had become unfamiliar and confusing, it was no longer possible for the participants to handle them without effort. Participants explained how they had to be more focused and thorough, and Monica exemplified by saying that she now had to ‘think about it all really carefully’.
The two categories that emerged from the analysis are presented below. The first category shows examples of characteristics in three subcategories presenting how participants described their experiences from situations fraught with risk. The second category shows how the participants in six different ways aspired to handle situations fraught with risk so that nothing undesirable would happen.
Being in unfamiliar and confusing situations, which are difficult to comprehend
The participants described situations fraught with risk when previously familiar situations in their daily life had become unfamiliar and confusing. The analysis provided examples of characteristics representing how participants experienced these situations. These characteristics are presented in the following three subcategories.
The unfamiliar place
A common experience among the participants was that places that had previously been experienced as familiar had become unfamiliar. This experience often arose very suddenly and unexpectedly. The participants talked about an impending risk that they might get lost when they were outside their home. One example of this was a hazardous situation, when Arthur was driving his car. Arthur spoke about how he suddenly failed to recognise where he was. This event was described as very unpleasant and risky, and he said, ‘I noticed that when I was driving that I suddenly didn’t know quite where I was. So I was beginning to lose the place … . It was nasty, very nasty’.
Another example of when an unfamiliar place was experienced as creating a risky situation was that of Marta who spoke of when she suddenly found herself perched on a rooftop. She neither knew where she was, why she was there, nor how she could get down. Marta found this situation terrifying and expressed that she had had a ‘blackout’.
The details do not come together
Situations fraught with risk were experienced as confusing when it was hard for the participants to understand the details and how they together formed the overall picture. Participants described that it could be difficult to understand how the details were related to each other. Mark expressed that he was exposed to the risk of getting lost outdoors since he had trouble finding his way. Instead of describing the surroundings as unfamiliar, he spoke of now having problems with seeing the details, such as where a street begins and ends and how the streets were related to each other. Mark described the overall picture as follows, ‘I don’t know the name of the street, and so on and where it ends, and begins and ends … It’s like I don’t have the details, so it is lack of details you suffers from, the ones that give you the whole picture’.
Uncertainty about what has actually happened
A characteristic feature of situations experienced as fraught with risk was when participants were uncertain about what had actually happened. They said they were unsure what the facts were, i.e., what really took place in retrospect. The participants expressed that they were uncertain as to whether they remembered the situation correctly since they did not get the feedback they needed from their surroundings in order to clarify it. Since the situation was confusing to them, it might result in something undesirable occurring. Peter described this problem in relation to taking the incorrect amount of medication. He said that he was often unsure if he had taken his medication. Peter meant that it was difficult to get any confirmation about whether he had taken the medicine or not, since he did not receive any specific feedback about whether he had or not. He said, ‘In fact sometimes I’ve forgotten my medicine. And actually, I’m very unsure what the medication does. Because I don’t feel anything. If I forget, I don’t feel anything strange’.
Being uncertain about what had actually happened and the facts of a situation also applied to their own life history, which was not always clear to them. Not being able to recall and tell others about their life history and situation could also result in increased risk. Arthur spoke, for example, of how this made it difficult for him when he went to the physician and had to describe his problems. The risk was that the physician might not get all the information required to help him in the best possible way.
Handling unfamiliar and confusing situations in order to reduce risk
The participants experienced handling situations fraught with risk in unfamiliar and confusing situations as challenging, and they could no longer handle them without conscious effort. Even though they were challenged, it is important to note that the participants faced these situations with confidence that it would work out and sometimes even with a sense of humour.
The analysis showed four different ways in which the participants tried to deal with these uncertain situations so that nothing undesirable would happen. These ways are presented in the following four subcategories.
Seeking something recognisable
To reduce risk, the participants tried to regain familiarity in situations that had become unfamiliar and confusing. This implied that the participants were seeking something recognisable and understandable in their surroundings to gain familiarity and clarity. One example was Mark, who at times got lost when he was out walking. This meant that Mark did not recognise where he was even though he used to be familiar with the environment. He described how he was looking for something familiar in the environment that he could recognise, something he was able to start out from in order to find his way home.
Participants also used other ways when searching for recognition. Marta spoke of how, instead of walking and searching around, she used to stop right there on the spot and wait for a moment. This break helped her so that she sometimes suddenly could recognise where she was.
Convincing oneself that the situation is as it should be
One way to handle risk in a situation experienced as unclear was by trying to convince oneself that it was as it should be. Participants expressed how they were uncertain about different things in a situation and how they checked the same thing over and over again in order to avoid errors. Christina spoke, for example, of how she struggled with adding up the total when she had to pay the bills; she checked the calculation several times, so she would be absolutely certain that it was correct. Christina said, ‘If only you knew how much I counted back and forth and back and forth last time when I did the bills’.
The participants found it difficult to be sure about what they had really done, as in the earlier example of taking the correct amount of medication and not getting any specific feedback whether it had been taken or not. Susanne who was afraid of taking too much or too little medication tried to solve this problem by making a note when she had taken her pill. By looking at the note, she tried to convince herself, over and over again, that she really had taken her medication. Accordingly, by writing the note, Susanne created feedback for herself.
When a situation was experienced as confusing, it appeared that participants sometimes used their perception of touch to convince themselves that the situation was as they wanted it to be and that nothing undesired would happen. Peter gave examples of this and spoke of how he, when leaving the house, used his hand to feel that he really had his wallet with him so he would not forget it.
Refraining from or exposing oneself to situations fraught with risk
Risk could sometimes be handled by refraining from a situation fraught with risk. Participants gave examples of when they felt that the risk was so great that it made them choose to not expose themselves to it, but they also gave examples of when they exposed themselves to situations, although they knew that there was a risk involved.
By trying to avoid one risk, however, something even more undesirable could happen. Participants spoke, for example, of how they wrote down the pincode to their debit card and kept the code and the card together. They did this to reduce the risk that they would not be able to pay since they had trouble recalling the code. Although they were satisfied that they could pay, they were worried that the code and card could get into the wrong hands and that they could be robbed. This meant that avoiding one risk led to adding another risk.
It is also of interest to note that when the participants refrained from performing an activity, they often missed out on other activities they wanted to do or in which they wanted to be involved. Harry had, for example, difficulties orienting himself, and he did not dare go out alone or use public transportation since he was afraid of getting lost; this meant that he also missed out on activities that took place outside of his home. This made him feel impeded and restricted. Harry said, ‘Yes, it means that I lose contact with life so to speak’. Due to the experience of not being able to perform the activities they desired since they would be exposed to risk, the participants talked about themselves in terms of feeling ‘constrained’ and ‘handicapped’.
The participants also negotiated with themselves making conscious choices and compromises regarding risk taking. This meant that potential benefits and negative consequences that could arise from taking the risk were weighed against each other. These negotiations could sometimes lead to them exposing themselves to situations even though they knew there was a risk involved.
Accepting assistance from one’s environment
When the participants expressed that they thought that the risk was too high if they were to handle the situation on their own, or that it was too difficult and stressful for them, they at times accepted assistance from their environment. Some of them concluded that it was better if someone who they believed had greater capacity than they had took over the activity. Harry said, ‘it’s better that those who are better up here do it’ and he pointed to his head, implying that he no longer had the same intellect.
Since it was often problematic to predict when a risk could arise in a situation, it was important for the participants to have someone available who could assist them. The participants who lived with a partner pointed out the advantages of being two but also neighbours could provide great comfort because they lived nearby and were often available. Christina said, ‘it’s reassuring to know that there is a door that you can knock on’.
The assistance that the participants received from people in order to reduce risks took on different forms. The participants requested, for example, that someone accompanied and monitored them when they were uncertain in a confusing situation. They wanted someone else to make sure that they carried out the activity appropriately. For instance, Susanne reported her concern about the risk of forgetting to eat her meals. She was often not sure if she really had eaten and wished that someone from the homecare services could monitor mealtimes to confirm that she had not missed her meal. In addition to personal assistance, participants used aids such as timers with the coffee maker and the cooker as fire precautions in order to reduce uncertainty and risks. Regarding a timer on the coffee maker, which emitted a sound if the coffee maker was on for too long, Marta said, ‘It’s good if the head’s not with you’. However, technical aids and home modifications did not always help the participants. For example, Susanne said that she no longer wanted to use the cooker, since she was afraid of it. Susanne did not know what a cooker guard was, and therefore she was worried about what might happen if she used the cooker.
Finally, it appeared that it was difficult for the participants to maintain a balance between reducing risk and accepting assistance from one’s environment, as this could be experienced as limiting in situations fraught with risk. Some of the participants expressed that their life situation had changed since they previously were able to perform their daily activities but now, due to the risk involved, needed to accept assistance in various forms. This led to dependence on other people and in that way they became more vulnerable. Christina said, ‘I’m used to managing on my own and now being exposed and turned over to all kinds of people’.
Methodological considerations
All participants were from the same memory investigation clinic, and they lived in an urban environment in Sweden. This may have limited the variations in the findings since risks are culturally embedded (Douglas, 1994), and all participants were recruited from a similar context. Another aspect that may have limited the diversity of the participants’ context and thereby the findings is the language criteria. Since only Swedish-speaking people were included, individuals who spoke other languages were excluded.
The study included a limited number of persons who were interviewed once. In retrospect, one might question whether additional data could have contributed to the findings. However, the data from the interviews were significant for the aims of the study. The participants’ experiences enhance our understanding and add to previous research in the field of risks.
The interview sessions were carefully adapted to suit the participants in order to facilitate the sharing of their experiences and to obtain significant data for the study. All but one chose to be in their home during the interview session, and the participants may have been supported, when answering questions, by their familiar environment. For instance, participants could get clues from their environment when talking about risks. The participants could also show the objects they talked about and demonstrate their actions when handling a hazardous situation. One woman showed objects such as the medication jars and shared her actions when tasked with handling the risky situation, which included writing a note when taking her pill. As Nygård (2006) argues, it can be challenging to access the experiences of persons with dementia; however, there is no other way to gain access to the knowledge than through their words and their contextualised actions.
Since the aim was to study the participants’ own experiences, the focus was on interviews. It is important to note that the findings emerged from the participants’ experiences, i.e., the persons’ own descriptions of risks and how they handled those risks, and not as observed by others.
During the analysis of the data, the ‘content analysis’ approach as described by Graneheim and Lundman (2004) provided clearly structured support. This facilitated the sorting of the data and also helped to incorporate relevant and exclude irrelevant data based on the aim of the study. This methodological approach also gave the authors the opportunity to go back and forth between the different steps, the parts and the whole of the collected data. This flexibility inherent in the method was appropriate in this study, since there was a need for both: descriptions close to the transcribed interview data and interpretations in the analysis. The authors’ intention in the presentation of the study’s context, participants, methodology and findings is that there should be sufficient information to allow the reader to determine whether the findings are transferable to other situations that are of interest to them (Creswell, 2000; Graneheim & Lundman, 2004).
Discussion
This study contributes knowledge that broadens our understanding of how people with dementia experience risky situations. The results show that risky situations in everyday life are experienced as unfamiliar and confusing, and consequently difficult to comprehend. Previous studies in this area have often focused on the risks that can arise for persons with dementia (Gilmour, 2004; Gitlin & Corcoran, 2000; Lach & Chang, 2007; Lach et al., 1995); however, in contrast to these studies, this study highlights the characteristic of risky situations in the manner that persons with dementia experience them.
In the first category of the results, three significant characteristics that describe the unfamiliar and confusing in risky situations were revealed. The first characteristic described how places that were previously familiar could be experienced as unfamiliar and how such a change from a place feeling familiar to being unfamiliar could happen suddenly. In a study by Brorsson et al. (2013), it was shown that small changes in the environment are sufficient, such as when groceries had been rearranged into the store, for a previously familiar location to be experienced as unfamiliar to a person with dementia. This implies that it can be difficult to predict the risk that a person with dementia will not recognise where they are and then, for example, get lost. The two other characteristics that emerged in the results have not been found in other literature. One is that it could be difficult for persons with dementia to see details and how they come together to form the big picture. This finding demonstrates how fragmentary and disjointed a risky situation can be experienced by a person with dementia. The third characteristic concerns the uncertainty around what has actually happened earlier in a certain situation, which further nuances how persons with dementia experienced risk and when something was confusing in a particular situation. Taken together, these three characteristics illustrate how people with dementia can experience risky situations as unfamiliar and confusing. If a situation is not accessible and clear for a person, it is not possible for them to understand it. Hence such a situation becomes more difficult to handle and thus prevents anything undesired from happening.
Based on the descriptions of how it is to be in these unfamiliar and confusing situations, it is clear that considerable conscious efforts were required on the part of the participants to manage these risks. This is reinforced by Burholt (2006), who highlights that it is difficult to act automatically if the situation is not a daily routine, which these situations no longer were as they had become unfamiliar and confusing. As also found in a study by Harris (2006) who described how persons with dementia did their best to handle risky situations, the participants in this study also strove to handle risky situations to thus avoid anything undesired from happening.
In the second category of the results, four different ways that participants described how they handled risky situations are presented. The way in which they handled these risky situations was linked to how participants described how they experienced them. It was evident that participants in different ways in unfamiliar and confusing situations tried to reduce the risk by seeking recognition and clarity and thereby avoid them. For example, participants handled risky situations in which they felt unfamiliar by searching for something familiar in order to have something from which to work. A similar finding was also found in another study where persons with dementia used ‘landmarks’ to find their way (Brorsson et al., 2013). These landmarks represented places that were familiar and easily recognisable for a person with dementia. In addition to the study by Brorsson et al. (2013), participants in this study also described how they handled uncertainty when they experienced a situation as confusing, by striving to make it clearer. They aspired in various ways to create or otherwise obtain feedback to be able to understand the situation. The methods the participants have used to handle risky situations are also to be found in other studies. For example, the participants stated that they wrote notes about what they should remember (Clare, 2002; Nygård, 2004), that they checked that the actions they should have done in fact were done (Brorsson et al., 2013; Nygård, 2004) and that they used their tactility to reinforce their perceptual input (Nygård, 2004). In this study, however, it became clear that the participants not only struggled to manage the risks, but they also sought to try and convince themselves that the situation really was as it should be.
In striving to avoid risks, it became apparent how the participants withdrew from risky situations. This behaviour could lead to limitations in their activities. These limitations naturally directly affected the activity from which they refrained, but they also had an indirect effect, since this behaviour could in turn lead to other activities not being carried out. Previous studies have also shown similar findings (De Witt et al., 2010; Harris, 2006). When designing support, it is therefore important to observe that the perception of risk can have both direct and indirect impact on occupational performance and consequently on, for example, a person’s habits and roles (Kielhofner, 2008).
The results also showed that the participants took into consideration whether they felt it was worth taking a risk or not. If they felt that it was worth taking the risk, the participants could expose themselves to situations even though they knew that they were risky. Clarke et al. (2010, p. 111) highlight how people with dementia ‘negotiate their decision-making’. They underline the importance of carrying out activities and supporting the maintenance of self and identity. Participants in this study also described how they negotiated with themselves concerning how they handled risks, since the management of one risk could lead to another risk arising. When people with dementia expose themselves to situations that they know are risky, this can contribute to ethical dilemmas for others in their environment. The dilemma may be that people in their environment try to balance the situation by taking into account the quality of life of the person with dementia and their desires, while at the same time preventing their exposure to risks (Clarke et al., 2009).
The results demonstrated that assistance from their environment as important in risky situations. It was apparent that it was important for persons with dementia to have people around them, such as neighbours, since the risks could arise suddenly and be due to various contingencies that could be difficult to predict. The participants described how it was reassuring to have someone close by who was available, but that dependency on the proximity to others also led them to feel constrained and vulnerable. As in other studies, the persons with dementia in this study received support from those around them (Clare, 2002; Harris, 2006; Nygård, 2004) and also from assistive technology (Harris, 2006; Nygård, 2004).
In summary, the results show that persons with dementia can experience risky situations as unfamiliar and confusing, and that their handling of a situation relates to how it is experienced. Even taking into consideration the complexity of each risky situation, it is still difficult to predict how it will develop since the circumstances and the relationship between the person and the environment are constantly changing. Based upon the perceptions of the persons with dementia in this study, it is interesting to reflect on how support should be provided. More studies need to be done from this perspective to determine how appropriate support can be given to persons with dementia to reduce risks in their daily lives. The results of this study may help to increase the understanding of risks in everyday life for persons with dementia; however, in meeting a person with dementia, it is important to focus on that person’s unique situation.
Footnotes
Acknowledgements
The authors would like to thank all informants for participating in the study and sharing their experiences.
Declaration of Conflicting Interest
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was financially supported primarily by Karolinska Institutet’s Doctoral School in Health Care Sciences.