Being a pedestrian with dementia: A qualitative study using photo documentation and focus group interviews.

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Article

Being a pedestrian with dementia: A qualitative study using photo documentation and focus group interviews

Dementia 0(0) 1–17 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214555406 dem.sagepub.com

Anna Brorsson Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet, Sweden

¨ hman Annika O Division of Health, Activity and Care and National Institute for the Study of Ageing and Later Life (NISAL), Department of Social and Welfare Studies, Linko¨ping University, Sweden

Stefan Lundberg School of Technology and Health, The Royal Institute of Technology, Sweden

Louise Nyga˚rd Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet, Sweden

Abstract The aim of the study was to identify problematic situations in using zebra crossings. They were identified from photo documentations comprising film sequences and the perspectives of people with dementia. The aim was also to identify how they would understand, interpret and act in these problematic situations based on their previous experiences and linked to the film sequences. A qualitative grounded theory approach was used. Film sequences from five zebra crossings were analysed. The same film sequences were used as triggers in two focus group interviews with persons with dementia. Individual interviews with three informants were also performed. The core category, the hazard of meeting unfolding problematic traffic situations when only one layer at a time can be kept in focus, showed how a problematic situation as a whole consisted of different layers of problematic situations. The first category, adding layers of problematic traffic situations to each other, was characterized by the informants’ creation of a problematic situation as a whole. The different layers were described in the subcategories of layout of streets and zebra crossings, weather conditions, vehicles and crowding of pedestrians. The second category, actions Corresponding author: Anna Brorsson, Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Box 23200, SE-141 83 Huddinge, Sweden. Email: [email protected]

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used to meet different layers of problematic traffic situations, was characterized by avoiding problematic situations, using traffic lights as reminders and security precautions, following the flow at the zebra crossing and being cautious pedestrians. In conclusion, as community-dwelling people with dementia commonly are pedestrians, it is important that health care professionals and caregivers take their experiences and management of problematic traffic situations into account when providing support. Keywords ageing, dementia, pedestrian, traffic safety

Background Engaging in activities in the public space is important for most people, even for people with dementia, although this has commonly been neglected (Keady et al., 2012). The most frequently used mode of transportation for senior citizens visiting friends and relatives and doing shopping is walking, followed by driving (Risser, Haindl, & Sta˚hl, 2010). Walking often includes a variety of traffic situations, for example crossing roads and interacting with traffic. Studies have explored older people as pedestrians, focusing on how they experience the outdoor environment (Wennberg, Sta˚hl, & Hydeń, 2009) and their street-crossing behaviour (Lobjois & Cavallo, 2009). People with dementia such as Alzheimer’s disease (AD) develop multiple cognitive impairments including reduced memory, executive function apraxia, aphasia and agnosia (APA, 2000). These cognitive impairments are likely to influence their everyday activities in public space, e.g. being a pedestrian. Earlier studies have found that pedestrians who had died in traffic accidents had a greater amount of dementia-related changes in their brains in comparison to a control group (Gorrie, Brown, & Waite, 2008), indicating that traffic situations may be especially hazardous to people with dementia. However, there is a lack of knowledge of potentially problematic traffic situations, how people with dementia experience being pedestrians in different traffic situations and how they meet problematic situations. Such knowledge is important to develop as the elderly population and thus the number of people with dementia, will increase (Wimo, Winblad, & Jonsson, 2007). People with dementia value doing everyday activities in public space (Brorsson, O¨hman, Lundberg, & Nyga˚rd, 2011), but they experience a variety of different problematic situations. Activities have been found to be performed in an activity radius near home and within walking distance from home (Brorsson et al., 2011; Duggan, Blackman, Martyr, & Van Schaik, 2008; Mitchell & Burton, 2006). Finding one’s way and interpreting the environment in public space are commonly perceived as problematic and these aspects could cause problems even in familiar space (Blackman et al., 2003; Sheehan, Burton, & Mitchell, 2006). The complexity in public space can create problematic situations for people with dementia through factors like crowding and noise level (Brorsson et al., 2011). These conditions are difficult to predict and they vary during the day due to traffic situations and weather conditions (Brorsson et al. 2011). Findings from one study showed how problematic situations occurred when people with dementia crossed roads and had difficulties following predetermined marks such as zebra crossings. The informants told of particular actions they used to cross roads safely, indicating that this was perceived as



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challenging (Brorsson, O¨hman, Cutchin, & Nyga˚rd, 2013) and suggesting that this is an important issue to investigate further. In this study, informants with dementia are confronted with different problematic traffic situations and they describe how they use different actions to meet these situations. The concept of problematic situations and how to coordinate these situations has been in the foreground. ‘‘Problematic situations are those where change occurs and individual or social habits of thought and behaviour prove to be inadequate or ineffective’’ (Cutchin & Dickie, 2012, p. 259). Problematic situations are prerequisites of human action, meaning that people act through their connections to different situations (Cutchin, 2013). To meet problematic situations the persons use actions and creativity in order to re-coordinate the situations in relation to the environment and society (Cutchin, 2013). The aim of the study was to identify problematic situations in crossing at zebra crossings and to identify how people with dementia would understand, interpret and act in these problematic situations.

Design The study was approved by one of the Regional Ethics Committees in Stockholm, Sweden. As there is a lack of knowledge in this research area and the research interest concerned consequences and interaction within the society, a grounded theory design was used in this study (Corbin & Strauss, 1998; Glaser & Strauss, 1967; Suchar, 1997). To get rich data two different data collection methods were used. They started with photo documentation comprising film sequences (Rose, 2007) and continued with focus group interviews and individual interviews (Barbour, 1999) with people with dementia, in combination with photo elicitation comprising film sequences (Harper, 2002). The analysis of film sequences was based on grounded theory as described by Suchar (1997) and focus group interviews were analysed according to grounded theory (Corbin & Strauss, 1998). Thus, the two data sets could be analysed in comparison.

Photo documentation comprising film sequences Procedures In the first step of data collection, photo documentation comprising film sequences covering a variety of zebra crossings was recorded in a major city with a population about 847,000 and in a medium-sized city with a population about 197,000 (Statistics Sweden) in Sweden. The film sequences included zebra crossings with and without traffic lights and of varying complexity. The choice was based on findings from an earlier study, where people with dementia preferred to cross streets at zebra crossings with or without traffic lights to feel safe (Brorsson et al., 2013). The purpose of using film sequences in the data collection was to explore what happened at a zebra crossing when anonymous people in general were crossing and what situations that could be observed as problematic. The filming was done by the first author (AB). The filming and analysis of film sequences was inspired by Suchar’s (1997) approach. Shooting scripts were used in the film-recording process, meaning that research questions are investigated by photographs, but in this case film sequences were used (Suchar, 1997). The focus of film recordings was on problematic situations in crossing at zebra crossings for pedestrians in general. The first questions to be answered by film sequences were connected



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to the aim of the study and included what kinds of problematic situations are observed at a zebra crossing and how pedestrians act when crossing a road without a zebra crossing. By using shooting scripts, new questions were constantly raised and new film sequences were made to get answers from the shooting scripts. One example of such questions is: What kind of problematic situations could be observed when people cross a zebra crossing with traffic lights when it is dark? New recordings were made continuously during one year between March 2011 and February 2012, in order to achieve a variety of data. In total, 22 recordings from ten different zebra crossings were made and the total time of the recordings was 1 h and 32 min.

Data analysis of film sequences In the first step of analysis, the different zebra crossings were sorted by the individual filming place to facilitate the analysis of problematic situations at different times of the day and seasonal aspects. In the second step, all recordings were watched multiple times with the focus on what was going on and on looking for problematic situations. These problematic situations were not defined in advance but to be discovered during the analysis. The recordings were then described in words, for example how the crossing was designed, what cars were passing and how bicyclists and pedestrians acted when crossing the road. These aspects were documented in a scheme to get an overview of the different recordings. Thereafter, the recordings were looked through and discussed in the research group in order to select parts of the recordings that should be included in the forthcoming deeper analysis of film recordings. It was decided to include one film sequence of zebra crossings with each of the following sets of conditions: a) evening twilight, traffic light and without traffic island, b) daytime, without traffic signal and with traffic island, c) winter with traffic light, d) a four-way junction, traffic island and traffic light and e) a situation with traffic light. These five conditions were meant to capture variations in situations with different levels of difficulty and problematic situations that a pedestrian may encounter. The time of each video sequence to be analysed was set to between one and two minutes. This short time was decided because the same film sequences were going to be used in the focus groups as triggers. These five film sequences were then transferred to the AtlasTi 7 software program. In the first step of this analysis, each film sequence was divided into different important and interesting parts, describing an action and a problematic situation. These parts varied in time depending on the length of each important action and problematic situation that occurred in the film sequences. These separate parts were later coded and one segment of film sequences could comprise several codes and each part could include different problematic situations. The codes were created from what was observed on the film sequences and no interpretations were done. Examples of codes were ‘‘talking on cell phone when crossing on a zebra crossing’’ and ‘‘walking when the traffic light was red’’. Each code was assigned a code comment where the author described what was happening on the film sequences as neutrally as possible. Memos were also written for each part of the film sequences in order to describe different aspects of the film sequences that the researcher thought were interesting and could be identified as problematic situations for people in general and for people with dementia in particular. These were also linked to theoretical interpretations and previous knowledge (Suchar, 1997) about aspects like accessibility and usability in public space for people with dementia.



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Table 1. Characteristics of the informants in focus group and individual interviews. Informants (n ¼ 6)

Sex

Age

Living situation

Diagnosis

Year of diagnosis

1* 2* 3* 4 5 6

Female Female Male Female Male Male

79 68 66 81 86 69

Single Single Cohabiting Single Cohabiting Cohabiting

AD** AD AD AD AD AD

2007 2003 2011 2011 2009 2008

*Informants participated in individual interviews at one occasion. **Alzheimer’s disease.

Focus group and individual interviews in combination with film elicitations Procedures The inclusion criteria for participation in focus groups were that informants should be diagnosed with dementia and engage in some activities in public space that involved being a pedestrian. Demographic data of informants are presented in Table 1. Data collection was done one step at a time and was followed by analysis before more data was collected (Corbin & Strauss, 2008). We started with one focus group of three informants with Alzheimer´ s disease. These informants were recruited from a Dementia Association. Hence, the informants already knew each other, as they regularly visited the same meeting place. Before giving their consent, informants were given written and oral information about the study and were told that they could withdraw their participation whenever they wanted. The first focus group was held at the association’s locale, which was a familiar place for the informants. This choice was made in order to facilitate finding their way to the focus group and to create an atmosphere of familiarity and safety. Disturbing aspects during the focus group were eliminated as far as possible; no persons were to interrupt the group and the environment outside the room was kept calm. During the focus group, informants were served refreshments (Barbour, 1999). The group was led by one moderator (AB) and one assisting observer (SL). The moderator led the discussion and the focus was on what it is like to be pedestrians with dementia, on what kinds of problematic situations they experience and on how they reason when they encounter them. Photo elicitation was used in the two focus groups, meaning that stimulus material was used, i.e. the five film sequences from the photo documentation. The film sequences were shown on a large screen on the wall. Questions were raised to encourage discussion and reflection, for example: What did you observe in this film? How would you cross this road? How could you relate this to your own experiences of being a pedestrian in your own neighbourhood? After the first focus group session, the recordings were listened through multiple times and new questions were raised to be further elaborated on in new interviews. Thereafter, the same informants from the focus group were interviewed one-on-one in order to develop deeper understanding of issues that had come to the fore in the analysis of the first focus



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group. After the first one-on-one interview, new questions were raised, to be elaborated on in the interview with the second informant and then with the third informant. All the oneon-one interviews took place in the informants’ homes on a day and at a time of their choice. The interviews were recorded digitally and transcribed verbatim. The interview lasted between 35 and 50 minutes. In the ongoing analysis, where the individual interviews were incorporated, it was discovered that data were not yet saturated and a second focus group interview was done. The informants for this group were recruited from another voluntary association and these informants also knew each other. The procedure of the focus group followed the same principles as the first focus group. After this second focus group, we considered the data to be rich and saturated, meaning that no new categories were emerging (Corbin & Strauss, 1998). The first focus group interviews lasted one hour and 50 minutes and the second group’s lasted for one hour. The focus group discussion was recorded digitally and transcribed verbatim.

Data analysis of focus groups and individual interviews The data from focus group discussions and individual interviews were analysed with a grounded theory approach (Corbin & Strauss, 1998; Glaser & Strauss, 1967). First, the transcribed focus group interviews and individual interviews were inserted into the AtlasTi 7 software program. The text was coded line-by-line, (i.e. open coding) and codes were given names close to the data (Corbin & Strauss, 1998), capturing actions (Charmaz, 2006). Codes could be, for example, ‘‘focusing on one thing at a time’’ or ‘‘avoiding crowding at the zebra crossing’’. In the next step of analysis, codes from the two different data collections, the film sequences and interviews were compared to each other by constant comparisons. Codes that were related to each other created a category. To exemplify, one category was ‘‘actions used to cross a street in a safe way’’. Finally, in the axial coding, categories were compared to find categories that related to each other in order to create a core category (Corbin & Strauss, 1998). During the whole data collection and analysis of data, memos were used to capture the researcher’s reflections and guide the data collection and analysis. During the whole data analysis, the codes and emerging categories were constantly compared to the original interviews and film sequences (Corbin & Strauss, 1998).

Findings In the findings, problematic traffic situations are described and also how the informants reasoned about meeting these situations as pedestrians. Findings from the analysis of individual and focus groups interviews as well as from the film sequences are presented in combination.

Adding layers of problematic traffic situations to each other In each category, different layers of problematic traffic situations are described. These layers of problematic situations could be added to each other and thereby present a problematic traffic situation as a whole. The problematic traffic situations as a whole are described in the



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different categories of layout of streets and zebra crossings, weather conditions, vehicles and crowding of pedestrians.

Layout of streets and zebra crossings In discussing film sequences, informants reflected on layers of problematic situations that typically were added to each other in the traffic environment. One layer was the layout of streets and crossings, for example. They had difficulties interpreting the complexity of streets, they reported. They had problems with four-way junctions with or without traffic lights for the pedestrians or drivers and big crosswalks with lanes in different directions. They were not sure what direction the traffic took, for example, if there were a lot of lanes. Therefore, the informants had difficulty knowing the direction the cars took when there were many lanes in one street. In this situation, they also became unsure if the first driver in the first lane would let them pass and if the drivers in the following lanes would stop or not. In these situations, their safety was threatened and they felt unsure. The informants disliked a situation when the layout of zebra crossings with traffic lights did not include the whole zebra crossing, but consisted of a traffic island where the pedestrian had to stop and wait for next signal. In this case, the layout of the zebra crossing became very complex; they then had to observe different traffic lights and the actual crossings. In this situation, when waiting at the traffic island, the informants came close to the vehicle traffic. Some of the informants did not like this proximity, although it did not bother other informants. This conversation describes the layout complexity of a zebra crossing: A: Bu that kind, where there are many crossings, are tough. B: In what way? A: Because I can never, because you can never rely on bicycle lanes because they can come from any direction at all, so first you have to concentrate on that, and then you walk, and then you walk a little way, and then you have to wait again, and then you have to concentrate again, and then you have to remember which direction the cars are coming from.

Another layer was related to the time intervals of traffic lights. The short time intervals could cause problematic situations for the informants. If the crossing included passing a lot of lanes, it could be difficult to reach the other side when the time was experienced as short. These situations could be experienced as worse if the person used a walker. Another layer, related both to zebra crossings and time, was cars turning while having a green light at the same time as the pedestrian. In this situation, the informants reported feeling stress when they were unsure if the cars would see them and let them pass and when people as well as cars were in a hurry.

Weather conditions Weather conditions could add complexity to these already problematic situations for the informants. In wintertime, when the zebra crossing stripes were covered with snow it was particularly difficult to interpret where a zebra crossing was located. From the analysis of film sequences, it was obvious that it could be difficult to discriminate pavement from traffic islands and curbs at the zebra crossings, as well as different marks on the ground in other seasons. The colour of the ground and curbs were commonly grey and became difficult to distinguish from each other. Informants reported that they had stumbled on curbs and traffic



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islands and it was common that marks were not as distinct as they could be, for example, when the zebra crossing marks had been scuffed and worn.

Vehicles Another layer of the problematic situations described by the informants was their difficulties interpreting in what direction the vehicles were heading. It became even more difficult when the drivers had not used turn indicators, they said; in this case, the pedestrians could not know what direction the vehicles were aiming to take. Another layer reported by the informants was that it was difficult to judge the gaps between vehicles when crossing a street. Judging the gaps was related to the fact that the informants had difficulty judging the vehicles’ speed when they were about to cross and judging whether they had enough time to cross safely. Informants had noticed that today’s new vehicles – electric cars and mopeds – could be quiet as they approached. Hence, they said, it could be difficult to hear, observe and interpret the direction of sound as the cars were approaching, especially in the winter when the snow mutes all sounds. Moreover, the challenge of observing and hearing cyclists caused problematic situations, which became even worse as the speed of cyclists is often high, said the informants. More difficulties were encountered when cyclists rode their bicycles on walkways and other areas and broke all kind of traffic rules. The problematic layer of cyclists was described by this conversation: A: No, but it’s so that . . . so to speak . . . bicyclists today are very, eh . . . it’s very tough with them. They ride both against the traffic and everything, and they don’t care, they just ride on crosswalks, yes, and everything. B: Yes, watch out, here I come. A: Yes they just race on. C: Mm

When traffic was heavy, it became even more difficult to interpret and act in an appropriate way regarding the direction and speed of cars. Informants also told of having experienced that drivers ignore traffic rules, for example, they don’t let the pedestrians cross at zebra crossings. Thus, they became unsure if they could cross safely when they did not trust that the drivers would let them cross even if the street had traffic lights.

Crowding of pedestrians To interact with other pedestrians could create problematic situations together with other layers. The informants did not like when a lot of people were waiting at a zebra crossing to cross, with people standing along the whole zebra crossing on both sides. In this way, pedestrians met each other all over the zebra crossing in a chaotic pattern. One informant said: ‘‘Yes, they come running and cross diagonally and so on. It’s not that everyone runs in a line straight across, or okay if they walk on the right, as they should. And the faster ones go on the left side’’. From the analysis of film sequences, it was found that pedestrians crossed zebra crossings in a disordered pattern to take the quickest way across the road even if they cut through the zebra crossing or cut across the cycle crossing. Informants also experienced that people crossing streets are often in a hurry and do not care if they bump into the person next to them. The analysis of film sequences showed that it was common that people were occupied with other tasks when crossing the road and not paying



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full attention to what was going on, such as other pedestrians or cars coming, at the zebra crossing. Commonly, pedestrians were looking at their cell phones, having a conversation, pushing a baby carriage, leading a cycle, or riding the cycle. Informants discussed how the crowding affected their safety as pedestrians, as their concentration and focus were affected, for example, by noise. This situation was described thus: A: Yes, those noises are also wrong all the time. There are so many, I can’t tell them apart in the same way as I did before. B: Of course it’s true that there’s background noise all the time. It disturbs you, so to speak but eh . . . if you say it like this, if I’m concentrating on something like that . . . then it’s like, eh . . . okay, it’s in the background but eh . . . if I’m going to cross the street, then I look and listen, because then the cars come and so on. Like with the other noise, I have the capacity to take it away. A: Do you have that? I don’t. B: But then it is like toned down, but then I’m focused on the sound from that direction, for example what’s happening over there, my brain doesn’t register that. A: Yes

Crowding on the sidewalks was still another layer adding up to problematic situations. The informants did not appreciate crowding with people waiting at bus stops or getting off buses, or if there were outdoor cafes on the sidewalks. Problematic situations on sidewalks could also occur when people used roller skates, skateboards or even bicycles, they said. In these situations, the informants had difficulties knowing where to go and where to feel safe, they reported.

Actions used to meet different layers of problematic traffic situations The actions used to meet problematic traffic situations were characterized by avoiding the variety of layers of problematic traffic situations, using traffic lights as reminders and security precautions, following the flow at the zebra crossing and being a cautious pedestrian.

Avoiding problematic situations Actions used by the informants to meet the problematic situations caused by the complexity of layout of streets included that informants could walk longer distances just to avoid the situation, as they preferred to cross streets with just two lanes. One informant said: ‘‘I don’t cross where there are several roads like this. I walk until there’s just one road, then it’s much easier’’. Some informants also avoided going to the city centre due to the complexity of streets and heavy traffic. Some of the informants preferred to walk with others, e.g. relatives, when the traffic situations were expected to be complex. By doing that they could feel safer, but they also said that they did not hand over all safety issues to the relative; they still tried to pay attention to the traffic themselves. To manage problematic situations with crowding at the crosswalk the informants tried to avoid the congestion by walking around it instead of walking through it. Another action to avoid the crowding at the zebra crossing was to wait some time before starting to walk on the green light when they did not want to jostle with the crowd of people at the zebra crossing. One informant expressed this by saying, ‘‘It’s easier to walk when the big cluster has run, the



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ones who’re in a hurry, because otherwise you feel that you’re just a plug that’s standing in the way’’. Using a walker could also contribute to problematic situations, because it meant claiming more space when using a zebra crossing and as it is was experienced as very easy to hit somebody with the walker. From all these reasons, the informants tried to avoid congestion.

Traffic lights as reminders and security precautions The informants told of feeling safer if they could use a zebra crossing with a traffic light and some said that they seldom ignored these lights, as many do in Sweden. They felt that the traffic light was experienced as a reminder not to walk out into the street without paying attention to the traffic, although they trusted their own judgment of when it was safe to cross a street. In winter the traffic lights became a reminder of where the crossing was situated when the marks at the crossing where covered with snow.

Following the flow at the zebra crossing When the informants’ trust in their own decisions became vague, they acted in the same way as other pedestrians; they reported that they followed the flow of pedestrians at the zebra crossing. This could mean that the informants could go even when the light turned red if a lot of pedestrians were crossing at the same time. By acting this way, they felt secure in the crowd of people. This was described in the following conversation ‘‘A: And then if there are several who walk against red, you follow gladly along. B: They walked, didn’t they? Yes, you’re like a terrier, aren’t you, you hang on’’. This behaviour was confirmed in the analysis of film sequences; pedestrians did frequently cross the road as a group when the traffic light showed red.

Being a cautious pedestrian A common action was to use extra caution and extra attention and observe carefully when crossing a road. The informants also told of being more afraid and feeling more stress than before in traffic situations. They felt a need to really concentrate in order to relate to everything happening in the traffic situations. A lot of their energy was consumed by their efforts to stay in control and be focused and they described that they thereby experienced a mental fatigue when moving in public space and crossing streets. Some informants tried not to take chances in traffic as they had done before their diagnosis, e.g. crossing the street in shorter gaps between cars. However, it was also obvious that some of the informants followed the flow of pedestrians and thereby trusted the crowd rather than their own control.

The hazard of meeting unfolding problematic traffic situations when only one layer at a time can be kept in focus The core category, the hazard of meeting unfolding problematic traffic situations when only one layer at a time can be kept in focus, was developed from the categories described in the findings. To cross a street, layers of unfolding problematic situations were added to each other and each of them had to be met by actions immediately and adequately, otherwise an unsafe



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crossing could be the consequence. How layers added to each other varied from time to time and required a variation of combined actions in response. Hence, new problematic traffic situations were experienced at different times when different layers transacted with each other as well as with the actions used by the informants. It was obvious that the informants were confronted with hazards in meeting the problematic traffic situations as a whole when they experienced the different layers one at the time and directed all their action to that particular layer. By doing that, the informants met the different layers of problematic traffic situations with different actions in a rather haphazard way, sometimes also failing to act as required. The hazard was understood as being related to their cognitive impairment, as they had difficulties in directing and maintaining focus in the traffic situations as a whole and at the same time meeting these unfolding layers in the situations with appropriate actions. A metaphor for the core category, the hazard of meeting unfolding problematic traffic situations when only one layer at a time can be kept in focus, is seeing the world through a camera lens. When viewing the world through a camera lens the person will just intuit one layer of the problematic traffic situation and can only attend to, relate to and focus on actions to meet that particular layer. Everything else is out of the range of the camera lens, although the person does know that there are layers of the situation continuously evolving out of the range of the camera lens that are important and may contribute to a problematic situation if the layers are added together. When the person turns, a new layer of the situation occurs in the range of the camera lens and he/she has to relate and immediately find actions for that particular situation. All of the different layers of field of sight are continuously added to each other and in order to get an overview of the complete situation the person has to make simultaneous decisions on what actions to use. To cross a street in a safe way the informants had to continuously meet all the different layers of problematic situations with different actions. But, they had difficulties dividing their attention to relate to these other layers, following the pace of the unfolding layers, when traffic situations as a whole were complex and unpredictable with a lot of different layers of the situation happening at the same time. Hence, hazards could appear when the informants had difficulties meeting the problematic situations as a whole. Returning to the metaphor of camera lens, the informants who made an active choice could coordinate the focus in the camera lens by using different actions to meet the problematic traffic situations. They could change camera lenses, for example and choose a close-up lens or a wide-angle lens and these actions were characterized by an active and conscious decision. Some of the informants made active choices to meet the problematic situations while others followed the flow of other pedestrians in a rather random order. The persons who followed the flow of pedestrians could be said to use the auto-focus. With this choice, the person made a seemingly safe decision when the camera decided that focus, in comparison to when the person her/himself had to decide when the focus was right, using manual focus or changing lenses in the traffic situation.

Discussion In the findings, problematic traffic situations were described when people with AD crossed streets at zebra crossings with and without traffic lights. To meet these problematic situations informants used many different actions. These actions are commonly used by most people



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when crossing a street, but what was specific for the informants with dementia became evident in the core category; it was the hazard of meeting unfolding problematic traffic situations when only one layer at a time could be kept in focus. All the different layers of the problematic traffic situations added up and the informants had to coordinate all of them in order to cross the street in a safe way. Coordinating the whole was experienced as difficult when they had problems staying in focus, grasping the traffic situation as a whole and using a variety of actions at the same time. In this way, the coordination with the layers of problematic situations for the informants was reinforced. Adding layer upon layer to the problematic traffic situations as a whole is in line with a study that explored mobility in public environments among persons with cognitive limitations, from the perspective of experts in fields including public authorities and health and rehabilitation services (Rosenkvist, Risser, Iwarsson, & Sta˚hl, 2010). The experts found that moving around in a complex and dynamic environment is exhausting for people with cognitive limitations. The experts reasoned that there was much going on in the traffic situations, as pedestrians, cyclists and cars are constantly moving and the person with cognitive limitations is forced to sort out the most important information from a large amount of it (Rosenkvist et al., 2010). These findings are supported by ours, presenting the perspective of people with dementia as one group of citizens with cognitive impairment. The informants in our study told of problems in maintaining focus and staying in control in ongoing traffic situations, as well as when deciding what action to use to cross the street safely. It has earlier been found that older people are more vulnerable to dual-task performance as they were less likely to complete their crossing when conversing on a cell phone (Neider et al., 2011). Our informants had even more difficulties performing actions simultaneously when their attention and ability to stay in control were already reduced and this led to hazards. To cross a street, the informants preferred to use first of all, a zebra crossing in combination with a traffic light and secondly, a zebra crossing without a light. But, they also experienced problems when they did not know if drivers would give way to the pedestrians at the zebra crossing. The traffic rule requiring drivers to yield to all pedestrians at unattended zebra crossing came into force in Sweden, 1 May 2000. After the inception of this regulation, the number of pedestrians injured at zebra crossings has increased by 40%. Criticism against the regulation claims that zebra crossings make the pedestrians feel falsely safe (Thulin, 2007). Consequently, today it is common that zebra crossings are removed and replaced with a crossing point in order to create safer crossings for the pedestrians in Swedish municipalities. A crossing point is a place where pedestrians cross the street where they find it natural or are directed by physical clues (Va¨gverket, 1999). Our findings suggest that the removal of zebra crossings could negatively affect the perceived accessibility of pedestrians with dementia, as they seem to find the zebra crossing to be very important for crossing a street. Crossing points are likely to be unfamiliar to them. A report from the National Road Administration in Sweden (2009) showed that people with cognitive limitations have learned the appropriate behaviour at a zebra crossing and our findings also show that a zebra crossing is a reminder to pedestrians not to walk out into the street. Further, that report (2009) highlighted that people with cognitive disorders had difficulties knowing how to act in a new traffic situation such as the pedestrian street, where pedestrians and cars are mixed at the same place (Nordin Lidberg, 2009). This was verified by our informants, who experienced difficulties when a lot of people and cyclists were mixed on the same zebra crossing or walkway. One way to increase accessibility for pedestrians is to



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separate cyclists and pedestrian and make wider walkways (Sta˚hl, Carlsson, Hovbrandt, & Iwarsson, 2008). By doing that, the congestion could decrease and accessibility for people with dementia or other cognitive disorders could be perceived as better. All these findings should be taken into consideration when deciding whether or not to remove zebra crossings and also when new traffic environments are introduced, as these changes could have a negative effect on older adults as pedestrians. In our findings, the informants had difficulties judging the speed of vehicles and gaps between cars and these findings are in line with those in other studies. Studies have found that older people have difficulties in making decisions about when it is safe to cross a street as they appear to select insufficiently-sized traffic gaps (Oxley, Ihsen, Fildes, Charlton, & Day, 2005) and accept shorter and shorter time gaps as speed increases (Lobjois & Cavallo, 2009). They also have tendencies to underestimate the time it will take to cross the street (Zivotofsky, Eldror, Mandel, & Rosenbloom, 2012). These findings and ours can be discussed from the perspective of normal ageing and agerelated perceptual, physical and cognitive limitations and can be related to each person’s potential to compensate for these limitations (Oxley et al., 2005). That is, people with dementia also have age-related limitations in combination with their diagnosis, which may create hazards for them in meeting problematic situations in general. One way of managing problematic situations the informants in our study used was to wait until other pedestrians had started to walk, while other studies have seen that older people tend to initiate their crossing sooner to compensate for their increased crossing time (Lobjois & Cavallo, 2009). In contrast, our informants tended to avoid the congestion at the zebra crossing and their walking ability seemed not to be in focus. But, the delay of starting to cross the zebra crossing on the green light may also create problematic situations; our informants had limitations in crossing the street when the traffic light was green. The informants in our sample were in different stages of their disease, but they were still engaged in daily activities in public space involving being pedestrians. Some of the informants seemed to be very conscious about how to act in different problematic situations, while others were not. It would be of great use to develop knowledge of how people with later-stage dementia and their relatives reason and act in different traffic situations. It would also be useful to develop knowledge of when people with dementia cannot coordinate with the environment and thus must abandon everyday activities in public space. In conclusion, our main finding was that people with dementia had difficulties in meeting unfolding problematic traffic situations when only one layer at a time could be kept in focus. In the findings, different layers of problematic situations were described, such as layout of streets and zebra crossings, weather conditions, vehicles and crowding by pedestrians. The findings also showed how the informants used different actions to meet different layers of problematic situations. These included avoiding problematic situations, using traffic lights as reminders and security precautions, following the flow at the zebra crossings and being cautious pedestrians. These findings illustrate the importance of making visible the experience that pedestrians with dementia have of problematic situations and their own actions to meet these. It is also important that caregivers and healthcare professionals take these actions and experiences into account when providing support. In order to make the public space accessible and usable for people with dementia, more research is needed in



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collaboration with people with dementia and with different disciplines such as town planners, architects, social scientists and occupational therapists.

Methodological considerations One common way of studying people as pedestrians is to use simulated road environments in research settings (Lobjois, 2009; Neider, 2011; Oxley, 2005). Using film sequences was considered as an option when the interest was in the views of people with dementia and when the focus was on collecting qualitative data. The film sequences were used as triggers in the focus group interviews. The use of film sequences instead of photographs was chosen because the actual actions and sounds in traffic situations were in focus. These aspects could be difficult to capture by using one-dimensional photographs. The method of using film sequences was experienced as appropriate for the aim of the study, as it would not have been ethical to observe and expose the informants in different traffic situation. This was based on information from an earlier study where observations were done when people with dementia went to and from the grocery shop. That earlier study found that people with dementia had problems acting safely in traffic situations and the researcher had to intervene to prevent participants from being injured (Brorsson et al., 2013). By using film sequences, we had the opportunity to expose the informants to different complex traffic situations without the risk of injury and they could discuss the film sequences with each other and link to their own experiences of being a pedestrian. The film sequences also trigged the informants to talk about different experiences that were not related to the actual film sequences. Interviewing people with dementia is known to be challenging, particularly in focus groups (Rosenberg, Kottorp, & Nyga˚rd, 2012) and the size of the groups was small, but this is in line with other studies doing focus group interviews with people with dementia (Boman, Nyga˚rd, & Rosenberg, 2014). The informants in the focus groups knew each other and all of them made their voices heard in the discussion and respected each other’s shortcomings, for example, when some informants repeatedly gave the same information. The discussion between the informants in the two focus groups turned out to be comfortable. In one of the groups, the informants posed questions to each other and the moderators did not have to interfere much in the discussion, while in the other focus group the moderators had to pose more questions to get access to the informants’ experiences of being pedestrians. In the second group, it was more obvious that informants had difficulties in their reasoning about the film sequences after the end of film and some of the informants made comments during the actual viewing. It could have been important to elaborate on these questions and remarks when they actually occurred, instead of waiting to discuss them after the film. The film sequences varied in length and it was found that the informants became tired toward the end of looking at the sequences, when they had difficulties keeping focused and observing what was happening in the film. In a future study, fewer film sequences could be appropriate. In the second focus group, it became more important to discuss the last sequences of film after the viewing and in this case, different photographs of different traffic situations may have facilitated the discussion. But, new aspects of being a pedestrian came up and data became rich. The informants in the second focus group seemed to have more severe dementia than did the first group, but these judgments were not verified by any cognitive screening.



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The film sequences were shown in an order going from less complex zebra crossings to more complex situations and also in an order facilitating the informants’ recognition of the different zebra crossings from their past experience. It could always be questioned whether different data would have been generated if the film sequences had been showed in different orders. Funding This research was financially supported primarily by the Health Care Sciences Postgraduate School at Karolinska Institutet, Stockholm, Sweden. Financial support was also provided by Stiftelsen Solstickan, Fondkistan, Demensfo¨rbundet, FSAs Scholarship, the Strategic Research Programme in Care Sciences (SFO-V) and the regional agreement on medical training and clinical research (ALF) between the Stockholm County Council and Karolinska Institutet.

Author contribution Anna Brorsson was responsible for the design of the study, data collection, analysis and writing of the manuscript. In the focus group interviews, Stefan Lundberg was an assisting observer. Further, Annika O¨hman, Stefan Lundberg and Louise Nyga˚rd participated in all the steps described above and in critically reviewing the manuscript.

Acknowledgements We wish to acknowledge the informants for sharing their experiences of being pedestrians with us.

Declaration of conflicting interests The authors declare that there is no conflict of interest.

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Anna Brorsson, Ph.D, is a university lecturer and Post Doc in the Department of Neurobiology, Care sciences and Society, Division of Occupational Therapy, Karolinska Institutet, Sweden. Her particular research interest is in the perspective of people with dementia and outside home activities and places. Annika O¨hman, Ph.D, is a university lecturer in the Division of Health, Activity and Care and National Institute for the Study of Ageing and Later Life (NISAL), Department of Social and Welfare Studies, Linko¨ping University, Norrko¨ping, Sweden. Her particular research interest is in the perspective of people with dementia, especially in the early and moderately severe stages. Stefan Lundberg, Ph.D, is an associate professor at the School of Technology and Health, The Royal Institute of Technology, Sweden. His particular research interest is in technologies that facilitate old people to remain in ordinary housing. Louise Nyga˚rd, Ph.D, is a professor of Occupational Therapy, Department of Neurobiology, Care sciences and Society, Division of Occupational Therapy, Karolinska Institutet, Sweden. Her particular research interest is in the perspective of people with dementia, especially in the early and moderately severe stages. In recent years, her particular interest has been in the conditions for people with dementia or Mild Cognitive Impairment as users of technology.


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