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

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, & Ståhl, 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, Ståhl, & Hydén, 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, Öhman, Lundberg, & Nygård, 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 challenging (Brorsson, Öhman, Cutchin, & Nygård, 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

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 Alzheimeŕs 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.

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Table 1.

Characteristics of the informants in focus group and individual interviews.

Informants (n = 6)	Sex	Age	Living situation	Diagnosis	Year of diagnosis
1*	Female	79	Single	AD**	2007
2*	Female	68	Single	AD	2003
3*	Male	66	Cohabiting	AD	2011
4	Female	81	Single	AD	2011
5	Male	86	Cohabiting	AD	2009
6	Male	69	Cohabiting	AD	2008

*Informants participated in individual interviews at one occasion.

**Alzheimer’s disease.

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 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 one-on-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.

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

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.

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 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 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, & Ståhl, 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 (Vägverket, 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 separate cyclists and pedestrian and make wider walkways (Ståhl, 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 age-related 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 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, & Nygård, 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, Nygård, & 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.

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.