Information and Communication Technology Design in a Complex Moral Universe
Information and Communication Technology Design in a Complex Moral Universe
Ethnography-Based Development of a GPS Monitoring System for Persons Who Wander
Abstract and Keywords
Increasing life expectancy and reduced birth rates as results of the recent demographic changes are linked to drastic changes in age structures. Aging societies are facing enormous challenges that are linked to increased age, reduced physical and mental capabilities, and the risk of social isolation and reduced autonomy. In an attempt to address these challenges, the fields of active aging and ambient assisted living currently focus on the use of technological innovations, which aim at developing innovative products as well as services and concepts to be implemented in care settings such as dementia care. However, sustainable implementation of these IT-based innovations often fails, because such innovations are not embedded in the everyday practices of elderly people and their surrounding social networks. Practice-based design enables acknowledging the often complex organizational, ideological, and practical issues that form part of a moral universe.
Keywords: assisted living, everyday practice, aging society, dementia care, practice-based design
11.1 Introduction
Increasing life expectancy and reduced birth rates as results of the recent demographic changes are linked to drastic changes in age structures. The number of persons aged over 80 will double until 2025; at the same time, the availability of care workers in the care sector will be reduced. Consequently, aging societies are facing enormous challenges that are linked to increased age, such as an increase in the number of chronic medical conditions, reduced physical and mental capabilities, and an increased risk of social isolation and reduced autonomy (European Commission 2015).
In order to address these challenges, IT is being given a major role in the development of innovative solutions for preventive and curative measures that may contribute to quality of life and everyday support in informal as well as formal care settings and that may increase the agency of the elderly in their everyday life circumstances (European Commission 2015).
(p.364) A lot of projects and funding schemes in the fields of active aging and ambient assisted living thus focus on information and communication technology (ICT)-based innovations, which aim at developing innovative products as well as services and concepts. However, sustainable implementation of these IT-based innovations fails, because they are not embedded in the everyday practices of elderly people and their surrounding social networks.
We see problematic issues in the following aspects. First, in many cases, IT projects for the aging society are set up under the perspective of “technological innovations.” However, IT projects for the aging society need to focus on how technological solutions could be embedded in the real life of elderly people and other relevant stakeholders (e.g., children and spouses as informal caregivers, professional caregivers in homecare/institutional care settings). Here we follow the path of practice-based ICT design and, in terms of methodological thinking, the grounded-design approach (Rohde et al. 2009, 2017; also see Chapter 1). However, we see the need to adapt the methodological and conceptual approaches of grounded design in order for it to be applicable in the field of IT for the aging society, particularly when it comes to research in the everyday contexts of persons who are not tech-savvy. In addition, the agency and autonomy of the persons we strive to design ICT for in this field are issues that need special attention and consideration.
In recent research funding calls, despite the increasing request for user participation in the design process, its realization often remains on a superficial level. Therefore, it is important to sharpen the conceptual and methodical design concepts for the field of IT for an aging society. In this way, research may better recognize the subtle and—on first glance—rather invisible specificities of the everyday life of the elderly and their surrounding and supporting social networks in order to develop IT designs that support sense-making processes and acceptance and appropriation by the target groups (Fitzpatrick and Ellingsen 2013).
The concept of grounded design (Rohde et al. 2017) is being developed as a framework with its instruments of “design case studies” (Müller et al. 2015a; Wulf et al. 2015) and “PRAXLABS” infrastructure (see Chapter 10) and aims at the integration of relevant elements in order to anchor design projects more sustainably in the social practice contexts of the target groups. The approach comprises of an ethnography-based pre-study for a profound understanding of the envisioned field of practice, and a cooperative prototyping phase, as well as a long-term appropriation study that aims to understand changes in social practices through the usage of the technologies introduced and, by this, to be able to measure the success criteria of the project. Through this approach, design ideas may be grounded and carefully explored as well as designed in deep grounding in actual practices.
We would like to contribute to this conceptual framework of grounded design with a specific lens on design and research activities in a project aiming at the development of a locating system for persons who wander, as wandering is a specific symptom in the field of dementia care. To explicate grounded design, Rohde et al. (2017) used case studies on the organizational use of information systems and/or encompassing actors who were younger, relatively tech-savvy, and with a research question that is, from the beginning, put very specifically in a relationship to a current and prospective usage of a ICT tool. We (p.365) would like to open up discussion on the specificities of ethnography-based design for the field of IT for the aging society and especially for the field of dementia care.
We have described elsewhere (Müller et al. 2012) the challenges of conducting ICT research projects with elderly persons who are not tech-savvy and—this is, in many cases, coupled—with their caregivers (either elderly spouses at home or professional caregivers in institutional contexts), who often are not tech-savvy either. This poses a special challenge to the design team in terms of gaining access to persons who often are initially not very much interested in “our” technical subjective or do not feel comfortable thinking about technological devices in their everyday circumstances. The buildup of trust, motivational aspects, and a common notional frame of reference has proven to be essential. Among others, we have described activity-based research methods to aim these needs (Müller et al. 2012; also see Chapter 10).
ICT research in the field of dementia care, however, illuminates further design challenges beyond an initially lacking common notional frame of reference. In IS research, for example, a common theme or a vision for participatory design projects between a design team and prospective users in a work organization is more easily set up because people already use current technology for their work. Gaver et al. (1999) pinpoint the difficulties that occur when ICT development projects move from the work to the home domain, where everyday settings are less routinized and less “task-oriented” as well as less technology-centered than in work settings.
The field of dementia care poses, on top of this, challenges in the intermingling of the autonomy- and agency-related questions of the target groups, as well as in respect to technology-related attitudes and acceptance (Fitzpatrick et al. 2010; Müller et al. 2010). Our research is inherently contoured by discourses in the field of professional caregiving; these discuss the “right” way to understand and deal with persons suffering from dementia. ICT design projects in this field are inherently interwoven in these discourses and more or less specifically discussed by the design teams in the presentation of their research results.
We would like to present our reflections on IT design in this sensitive setting in respect to practice-based design and grounded design, respectively, and especially emphasize the usage of ethnographic and action-research-based methods to gain a deeper understanding of some specificities of the field of dementia care in Germany.
Therefore, we present a case study aiming at the development of a location system for persons with dementia who wander. After having presented the three steps of the case study (pre-study, prototyping, and evaluation), we will enclose some methodological reflections. We are especially interested in opening up discussion of the tension between the actual practices of the caregivers in the field and their corresponding lines to societal, medial, and medical discourses.
11.2 Related Work
Recent research work on IT for dementia care has demonstrated the need for a deep embedding of technology in everyday practices that implicate the value judgments and (p.366) attitudes associated with caring for and making decisions for another person (Robinson et al. 2009; Dahl and Holbø 2012a, b). The literature shows the dual nature of surveillance (Essén 2008), which in the field of dementia care produces value conflicts of awareness versus privacy and safety versus autonomy (Landau et al. 2009; Landau et al. 2010;). Other authors provide a more nuanced picture on the basis of qualitative research results, such as Dahl and Holbø (2012a), who point at the multifaceted nature of stakeholders’ views on the dilemmas of GPS tracking patients in professional dementia care. In the same vein, we demonstrate that different aspects of a GPS-based monitoring measure are linked to distinctive and heterogeneous values that range across settings and roles.
For late-phase dementia sufferers, a tracking system could provide a balance between preserving their autonomy and keeping them safe. However, in a first trial of GPS technology used to track dementia sufferers, five out of the eleven respondents dropped out of the study (Miskelly 2005). This is the starting point of our study—a detailed investigation of the sociotechnical factors that make GPS deployment so problematic. As of today, even though there are commercial GPS tracking devices, they are seldom bought and used (Robinson et al. 2009). Our study shows that the take-up of such technologies by either the familial caregivers or the care institutions, in this complicated context, has been underwhelming.
Brodaty et al. (2005) show low take-up of available services by caregivers in general. The reasons for this, the authors suggest, are a perceived lack of need and a lack of knowledge of related services. Stigmatization was given as another reason for the caregivers’ reluctance to use services. The low uptake of technological aids in dementia care points at the need for a better understanding of the social/sociotechnical issues in technology usage in dementia care. The social, ethical, and legal universe in which caregivers operate problematizes the deployment of such technologies in a variety of ways, and this chapter aims to detail this.
Here, we present a grounded-design study delivering a holistic documentation covering the full life span of a design case study. This includes (1) a qualitative pre-study on the practices of professional and familial caregiving for dementia patients who wander, (2) design and prototyping of the technology, and (3) an evaluation phase in which the appropriation and usage of the developed technologies in a real-life environment is observed over a long-term period. As such, it is broadly consistent with the grounded-design and design case study approach advocated by Wulf et al. (2011, 2015; Rohde et al. 2017). However, the field offers some specificities that need more reflection, especially in order to gain a thorough understanding of the different discourses in the “application field” and the reflective work needed for ICT designers.
Practice-based design in human–computer interaction (HCI) appears in methodological framings such as participatory design (PD), and living labs in real-life contexts (Carroll and Rosson 2007; Følstad 2008; Ogonowski et al. 2013). These approaches aim at a better understanding of the social fabrics in which future technologies are to be used and how current end-user practices and attitudes may influence the design and appropriation processes of the final product to be developed. In regard to PD with/for the elderly, research has demonstrated the importance of taking elderly persons’ attitudes and (self-)images into account. These are often based on a low familiarity with new media, resulting (p.367) in anxiety and a reluctance to get in touch and hence indicate the type of measures that should be taken in order to develop technology that is meaningful and useful to the elderly (Brandt et al. 2010; Lindsay et al. 2012; Wan et al. 2014). PD work with persons with dementia brings specific challenges with it, as, for example, discussed by Dahl and Holbø (2012a), who worked with persons with early onset dementia and their relatives/familial carers. They show that one potential problem is that the voice of the person with dementia might be suppressed by the caregiver. When working with a person in the later stages of dementia, it may become necessary to rely more on the judgments of their familial or institutional caregivers rather than on the actual person, so the researcher has to evaluate the work via this substitutional interpretation. Thus, the target group incorporates the caring networks in a very close way.
In the literature of ICT support for healthcare, there is a general move toward approaching the design problem from a sociotechnical perspective (Ballegaard et al. 2008; Kaplan and Harris-Salamone 2009; Fitzpatrick and Ellingsen 2013). Themes in the area of home-based healthcare, for instance, evolve around the communication and cooperation needs of various stakeholders in chronic illness treatment (Palen and Aaløkke 2006; Pratt et al. 2006; Mamykina et al. 2008; Pang et al. 2013; Schorch et al. 2016). Research has demonstrated that values and attitudes of each stakeholder play an important role in appropriation and usage of ICT (Christensen and Grönvall 2011).
Other research stresses the social side of healthcare, for example, research into support for social interaction and the sense of belonging for the elderly (Judge et al. 2010; Gaver et al. 2011; Vines et al. 2012; Uzor and Baillie 2013). Such work increasingly focuses on maintaining and boosting the participation and autonomy of older adults so that they can continue living, as much as possible, independently even in circumstances where older people are experiencing cognitive and/or physical decline. Research work in the context of cognitive issues has aimed at key problems such as the role of various stakeholders in the care process and has dealt with such issues as “whereabouts” or “biographical” awareness (Mynatt et al. 2001; Consolvo et al. 2004; Abowd et al. 2006; Wittenberg-Lyles et al. 2010) and monitoring (Morris et al. 2003; Petrakou 2007; Demiris 2009).
This sociotechnical stance is all the more significant in the field of ICT for dementia care. Assistive GPS technology for healthcare, work on the living conditions of older adults with chronic diseases (e.g., dementia), and ICT support options point to the high degree of social embedding of, for example, location-based systems and how different strategies have been applied to minimize the tension between privacy and awareness and between safety and autonomy (Crabtree et al. 2003; Gowans et al. 2004; Landau et al. 2009; Robinson et al. 2009; Tsai et al. 2009; Landau et al. 2010; Müller et al. 2010; Müller et al. 2013; Wan et al. 2014). This, in turn, has led some researchers to reflect on the appropriateness of research methods, such as the testing of off-the-shelf technologies in real circumstances (Dahl and Holbø 2012b) and to a call for more long-term evaluations of developed prototypes in general (Fitzpatrick and Ellingsen 2013).
Although research indicates that there has been insufficient acceptance of tracking devices in dementia care (Astell 2009), we do not fully understand why the take-up of such technology has been underwhelming. Our review of the literature found no example of previous work that compared different care settings and the moral and ideological (p.368) world they inhabit. Our study, in contrast, shows that the differences to be found in different contexts are sometimes striking and have a direct impact on the willingness to deploy tracking technology.
Because of the richly situated, continuously evolving, and collaborative nature of healthcare, studies in the field of HCI or computer-supported cooperative work often are carried out with qualitative methods. In the case of dementia care—an example of the “sensitive setting” that Crabtree et al. refer to—research into the problems of dementia sufferers and their families is particularly challenging. Crabtree et al. reported on their experience of adapting cultural probes when developing computer support for former psychiatric patients living in residential care settings, for older members of the community, and for disabled people living at home (Crabtree et al. 2003). Underpinning such work is a concern for “responsibility”—who is responsible for care, and in what circumstances? Can sufferers be relied on to act responsibly in their own interests?
Some authors noted that when conducting PD workshops with both dementia patients and caregivers, it is important to prevent caregivers from becoming the dominant or only voice. Patients may be otherwise unheard (Dahl and Holbø 2012b). Value sensitive design (Friedman 1996), as an information system design methodology, emphasizes how values play out in design and how balancing competing values in various situations plays an important role. Robinson et al. (2009) aim at supporting independent living and involving early onset dementia patients in the design process. We, however, are dealing with late-stage dementia. In fact, we tried to involve the patients in our work but the methodological challenges proved to be insurmountable.
The issue of how to analyze the complex, detailed qualitative data from in-situ studies in healthcare is a further challenge. We align our methodological approach with the practice-based computing research framework of Wulf et al. (2011, 2015). Under this framework, we approach our research in three phases: (1) empirical pre-study, which involves empirically analyzing actual practice in a specific application context; (2) PD, which involves designing ICT artifacts based on the findings of the first phase, with inclusion of the stakeholders; and (3) evaluation, which involves examining the appropriation of the technical artifact over a significant period of time. Our work, then, focuses on presenting the whole design process, which includes building, deploying, and evaluating a system over a long period of time.
11.3 Overview of the Context Study
The aim of the pre-study was to gather data on how conflicting demands and values in dementia care are being dealt with in practice. To do this, we examined practices in domestic as well as in three different institutional care environments, relying mainly on interviews and participant observation for our data. Interviews were only loosely structured, reflecting our general, but initially unfocused, interest in attitudes to and practices with dementia care tools and resources.
The three different care environments in which we found interview partners were care homes, special dementia living groups, and institutional care facilities. In general, (p.369) it should be pointed out, accessing “users” in these circumstances is difficult. Our first attempts at user contact showed that many dementia-affected families feel reluctant to discuss this sensitive topic with unfamiliar people. It required, as is always the case in such sensitive settings, the development over time of trust in our motives and our ability to behave responsibly over time. To do so, we looked for “gatekeepers” or “door openers” who could help. They were available in the form of organizers of a local self-help organization. These persons had widespread contacts with families as well as institutions, and the willingness of people to be interviewed by us largely depended on their vouchsafing of our good intentions.
We conducted twenty-one semistructured interviews, with six family caregivers (two wives, one husband, two adult daughters, and one adult son of a dementia sufferer) and fifteen professional caregivers (six ward nurses and nine managers) from stationary care facilities. Each interview lasted about 2 hours. All the interviews were audio recorded with approval and were transcribed and anonymized for data analysis. Besides interviews, we have held several meetings with an Alzheimer self-help organization. These meetings have been documented in field notes. Furthermore, we spent some days on participant observation in institutions and families (10 hours in a care home, and 10 hours in a dementia flat share). They were also documented in the form of field notes.
After we readied all the empirical data (interview transcripts, field notes), we started a collective and systematic coding process. As a team, we held data analysis workshops regularly to update the code system, cross-code each other’s material, and group discuss on unclear points. This helped to minimize the number of different interpretations among individual team members.
Based on the results of the pre-study, we held regular design workshops with the self-help organization, to test and validate design ideas as soon as possible. As care practice in institutional care strongly suggests the need for a mobile application, we also held two design workshops with nurses in care homes to discuss the mobile application design. In all design sessions with the users, we encouraged them to express their ideas, even very abstract or unrealistic ones. With our help, the participants created paper mock-ups and design sketches.
For the evaluation phase, we remained in contact with most of the interview partners from the pre-study and had hoped to enroll them again for further testing of the system in the long term. However, only one care facility was willing/able to join the long-term evaluation. It was even significantly harder to find participants for the field evaluation than for the pre-study, for three reasons. First, along with the project progress, the problems of the affected persons had also progressed. They were now either not able to walk, or the caregivers were too afraid to let them walk freely. Second, the institutions were very cautious about testing the system in real environment, because of the possible philosophical or legal ramifications associated with technology failure. Third, testing the system in real environments would have brought additional cost to the institutions, including, for example, human resources and time to use the technology, effort to gain a certain amount of expertise with the technology itself, and any additional handling effort if the system malfunctioned. In fact, a lack of available resources was one of the main reasons why many institutions were not willing to participate in our field test.
(p.370) We finally managed to enroll three environments and tested our prototype there over a time span of 3–5 months. The environments were a hospital ward, an elderly care home, and a family. In all three environments, the caregivers conducted care supervision in an “open” way, which meant that wandering by patients had already been allowed before our IT intervention was introduced, and the caregivers had already developed certain measures to ensure patient safety as much as they could. We handed out user diaries to the caregivers and used them as memory aids for the interview visits we had with them every 2–4 weeks. A more fine-grained description of the three locations is given in Section 11.7.
11.4 Pre-Study: Findings
11.4.1 Understanding the Complexities of Caregiving for Persons with Dementia in Institutions
Patient Admission: Bias in the Bilateral Selection
Taking care of a dementia patient at home is a demanding job for relatives, especially when the patient has a tendency to wander. The physical and mental strain can be overwhelming for family caregivers, who often lack professional insight into care management. When they turn to stationary care institutions, patients and the care institutions can, in theory, choose each other freely and bilaterally. In reality, there is a strongly biased power distribution in this selection. Notably, it is extremely difficult for families to find a suitable institution for the dementia patient with wandering tendencies.
The first issue families consider when prioritizing their choices is the distance of the institution from their home. Very soon they realize that very few of these institutions have a clear care concept for the “wanderer.” Their initial choice pool, that is, rapidly diminishes.
One institution, for instance, noted that they would not accept wandering clients because “we cannot take the responsibility for them.” This was not, to be clear, because of legal ramifications, but because of a moral concern for the welfare of the wanderer in the absence of a reliable and practical monitoring solution. In contrast, caregivers at another institution, which did accept dementia patients with wandering tendencies, claimed that it was “an open house,” as the doors of the care home were not locked and the inhabitants could leave at will. Having said that, they applied a series of precautionary measures, such as using heavy doors that were very difficult to open, hidden door knobs, hidden exits behind curtains, and so on. Again, measures of this kind were not universally accepted among professional caregivers. Some considered these measures to be a legitimate expediency, while others saw them as an affront to human dignity and as manipulative of a group who were not able to distinguish aspects of reality.
Prevention in Practice: Heterogeneity and Controversy
The strategies that institutional care workers use on a daily basis when dealing with the wandering behaviors of dementia patients are highly heterogeneous and contextual. This is partially decided by the complex and volatile situations they face on a daily basis. (p.371) Decision-making in such conditions is constantly mediated by legal, ethical, and moral trade-offs. In Germany, detailed legal standards have been institutionalized in such facilities to prevent abuses such as tying patients to beds or chairs. Professionals now routinely refer to “freedom-depriving measures” and told us about their concern that certain preventive actions may be deemed freedom-depriving measures. The standards—although established some years ago—work more as guidelines rather than solutions (although some restrictions on freedom, such as locking the bedroom doors, are clearly illegal). In the absence of an unambiguous definition, there is significant uncertainty and confusion, not to mention a variety of moral positions, on the part of professional caregivers and managers when making decisions.
From our samples, such preventive measures fall into three categories: (1) constructional measures, (2) technical support, and (3) human intervention.
Constructional measures include tricks such as heavy doors and camouflaged (or hidden) exit. Creating “endless corridors” is another commonly used measure. In one dementia flat share we saw, the corridor was built in a circular form around a public area in the middle. This let the patient take walks along the hallway but never reach the exit. Such measures were controversial for care workers and, often, there were quite different perspectives on the acceptability of the measures on view. The “constructional” principle was viewed by some as inhuman: “This is awful to imagine: you are walking and walking and you never arrive. This can make you even more confused!” (female relative).
The second category of preventive measures is using technology to monitor patient behavior. The following monitoring technologies have been (or partially) applied in our samples: video cameras, door safety systems, and sensor mats. The professional caregivers’ attitudes toward monitoring technology are more consistent and are characterized as a general reluctance. Their reluctance to use this technology stemmed from the following reasons: (1) fear that it might be categorized as a “freedom-depriving measure,” (2) usability issues with the system, and (3) distrust in the reliability of the system.
Third, human intervention describes the way in which some caregivers developed measures to keep patients busy and distracted from the urge to wander. Activities such as reading, chatting with each other, eating together, and going for walks together are the most common ones. Keeping patients busy during the day also helps them sleep better at night, which reduces the danger of patients wandering off. Many caregivers told us that they have to constantly keep an eye on the patients’ activities and assess the situation, because “most of the time we don’t know whether they have a wandering tendency. Sometimes we can predict it based on the patient’s behaviors.” This is especially challenging when they are undertaking care routines in patients’ rooms. One solution is to put temporary barriers in the way. Commonly used barriers are, for example, the nursing cart or toilet chairs. The nurses told us this is a compromise, because normally they try to keep the hallway barrier-free so that the residents can walk safely but at the same time they have to monitor while coping with staff shortages.
Problems in Finding and Retrieving
Patients can, and do, wander. When a patient is presumed to be lost, members of the care staff will be organized to look for the lost one. The approach is normally ordered as (p.372) follows: looking inside the building, calling the patient’s relatives, looking outside, and finally calling the police. Interviewees told us that some patients have their favorite wandering routes. These routes can be the way home, or a personally favorite path. But there were still many practical problems in coordinating the search and finally bringing back the patient. How to bring the patient back to the institution is another challenge, especially when the patient does not recognize the care staff and is reluctant to return to the home with them. Some professionals reflected that they sometimes use “white lies” to trick the found patients to come back with them, such as, for example, “Your daughter has just called.” They mentioned that for each patient there are several “key words” that typically work well. But these “key words” are highly individual for each patient. And it requires deep understanding of the patient so that one can apply them appropriately in a challenging situation.
Attitudes of Care Institutions toward GPS Monitoring Systems
None of the institutions we interviewed used a GPS tracking system to monitor patients. Despite the fact that they have a need for such as a system (as care staff are overburdened), the sheer heterogeneity of care concepts/practices makes commercial products unsatisfactory. Inappropriate merchandizing of providers to users who are not technologically savvy is another reason given by caregivers for the reluctance to deal with the technology. Inconsistent attitudes inside institutions also inhibit unanimous acceptance of such technology. At the macrolevel, legal and ethical standards are vague and subjective, and guidelines are in short supply.
However, all the institutional care managers who were asked for an interview did invite us to get information on the state of the art in this area. All of the interviews with managers—and many of the interviews with relatives caring at home—thus had the form of an informal information-and-experience-exchange space. In many cases, during the interview, we used the Internet to look up information on state-of-the-art systems and then discussed them with our interview partners in regard to their perceived needs. This way—as with the activity- and technology-based procedures with elderly and non-tech-savvy persons (Müller et al. 2012)—we could build up a common thinking space and help managers/relatives rethink their attitudes and ideas about the possible benefit or harm the monitoring technology might have for them and the persons they cared for.
11.4.2 Understanding the Complexities of Caregiving for Persons with Dementia at Home
Autonomy versus Safety: Two Entirely Opposite Cases
The analysis of the interviews with family caregivers—husbands, wives, sons, and daughters—offers very different perspectives on the evaluation and discussion of the autonomy and freedom needs of the affected family member. The difference can be significant. In one case, where care took place in the home, a husband reported that he allowed very little freedom of movement to his wife. While in their home, he would not allow her to be alone in another floor—for fear that she might hurt herself. Being a retired (p.373) engineer, he developed coping mechanisms for their everyday life: he “engineered” her eating, sleeping, and bathroom times with medication. In his understanding, autonomy was not relevant for his wife, as she was “no longer here” with her mind.
In contrast, the daughter of a woman with medium-stage dementia built a social network to collaboratively take care of her mother, so that her mother can live independently in her home and conduct everyday tasks—even go to the city—on her own. For the daughter, it is vital that her mother feels that she is autonomous—and she has adopted many measures to “artificially” achieve this, such as asking shop clerks and bank officers to give the mother what she wants, but up to a certain level. Sometimes the daughter “shadows” her mother on her way to town. For the daughter, her mother’s ability to maintain a public and independent “face” is of primary importance.
For many of the relatives we interviewed, the classic value trade-off between safety and autonomy is of minor relevance in their decision-making, especially when the disease advances. Many relatives report primarily on the overwhelming burden of concern for the dementia-suffering family member. So for them, keeping the loved ones safe is much more important than preserving their autonomy. As the disease progresses, the patient’s mental existence is normally perceived as “fading away,” and autonomy becomes less and less important for them (although this is not universal; it is a feature of such relationships that they engender a great deal of reflexive concern, contingently negotiated).
Impact of Preexisting Family Patterns on Care Concepts
In the home context, families tailor care strategies to fit local conditions and needs. Each family has its own habitual familial pattern, determined by the family’s structure and hierarchy, balancing between genders, and children/parent roles. Our empirical analysis indicates that preexisting roles can have completely different effects on the care concept when dementia occurs. For example, in one case, a daughter and her mother who took care of the father who suffers from dementia at home reported that the father had always had a dominant role in the family and a strongly independent attitude. Even with the onset of dementia, he continued to assert this dominance. He still took long walks on his own, leaving his family in a self-confessed position of helplessness: “We cannot hold him” (Mrs. C.). This, we discovered, is quite common in situations where female relatives have to cope with male dementia sufferers. In contrast, in the case of the husband who “engineered” the behavior of her wife, his preexisting and continuing dominance in the family had actually “helped” him manage his wife’s life with less resistance.
Thus, dementia care is mediated by prior family patterns and the role expectations contained therein. How to design a universal technical support that will work in all familial situations is, unsurprisingly, challenging. Technology support in the family context needs somehow to balance the continuities and changes experienced by both patients and their caregivers.
Attitudes of Family Caregivers toward GPS Monitoring Systems
Family caregivers tend to be more open about the possibilities of a GPS-based monitoring system. However, the degree to which such a system is required depends very much on the progression of the disease and the coping strategies adopted by caregivers.
(p.374) As in the institutional context, the interviewed families had a need for technological support and were aware of its existence, but none had bought a commercial product. Some of our users made the frustration with their experience of searching for a GPS solution very clear, stating that there was a lack of reliable information channels about such products, or that insufficient information was provided by the product websites that, in addition, were perceived as addressing technological specialists only.
11.4.3 Design Implications
From the empirical results of the pre-study, we were able to identify the following design implications. Clearly, heterogeneous assumptions demand flexible solutions. Tailorability (Henderson and Kyng 1991; Wulf et al. 2008) and end-user development (Lieberman et al. 2006; also see Chapter 13) in this case are of great importance. The system should provide as much flexibility as possible to allow for divergent attitudes, ethical/legal concerns, and care routines to find their footing in it. Consequently, there are the following implications for design:
• reliability: reliability is an important requirement for all IT systems but is critical in this context; tolerance of system failure is very low, especially in the institutional context
• history of paths: almost all caregivers, no matter whether professional or familial, told us that patients have their favorite wandering routes, and in large degree are predictable, so keeping a history of the wandering routes in system could help identify such favorite routes and thus help in the search for patient; more importantly, when provided with such a history, caregivers might be able to identify the patients’ motives behind the wandering and their reasons for choosing these routes
• high flexibility of system configuration: the constant value trade-off between safety and autonomy requires the system to provide options for the user to tailor the system according to temporal and spatial evaluation of the situation; for instance,
• it should be possible to set up safety areas (or digital fences) on the map and receive prompt notification when the patient leaves those areas
• the caregiver should be able to configure the tracker to update the positions either automatically or manually (pulling or polling mode)
• the position update interval should be adjustable
• information on the patient needs to be anonymized, in order to meet the privacy requirements of certain institutions
• support for cooperative monitoring: caregivers already cooperate with each other to manage the care work in practice, and cooperation also happens between professional and familial caregivers; the system should therefore support communication, coordination, and negotiation between them
For the mobile application, we had the following design implications:
• elderly-friendly user interaction: the design of the mobile application should supply simple design and straightforward user interaction; many caregivers are themselves elderly and have difficulty in reading small screens and understanding smartphone operations
• navigation function: it is essential to provide a navigation function in the mobile application to locate the wandering patient and navigate the caregiver to him/her
• “key words” and integrated contact lists: the caregiver should be able to access some “hint” information to help persuade the patient to come back, such as the “key words” mentioned in Section 11.4.1; in addition, a contact list should be added so that the caregiver can order help via the mobile if needed
The design decision to use a Web portal in combination with a mobile application allowed a distribution of functions. On one hand, this made it possible to use functions at their most suitable screen size. The Web portal functionality was designed for the PC screen, which provides enough space for location monitoring, system configuration, and jobs that are easier done with mouse and keyboard, such as drawing a safety area. The mobile application suited situations that require mobility, such as the navigation function in a patient searching. Having said that, flexibility of access turned out to be extremely important.
11.5 Prototype Development
In the institutional context of this research, the actual development of the prototype was the responsibility of a software company who formed part of the project consortium from the start. We conducted regular project meetings every 3–4 weeks with the developers from the company, to transfer our results and design. As a research institute, we also developed an iPhone application, which had not been envisioned in the draft of the project plan.
The final prototype was a complete GPS-based location monitoring system to help caregivers better manage the wandering behavior of dementia patients. The system consisted of GPS trackers to be carried by the patients, a Web portal for monitoring the patient’s position and adjusting settings (e.g., configuring trackers and defining safety areas on the map), and an iPhone app for mobile monitoring (see Figure 11.1).
Figure 11.1 Screenshots of the prototype
The prototype featured all of the features mentioned in Section 11.4.3, save one: the cooperative monitoring feature. Given that we were partnered with a commercial organization, our design ideas had to be filtered through their interests, and this was the main reason why the cooperative monitoring feature was not implemented. Nevertheless, we were able to refine our part (the iPhone app) in multiple design cycles based on several PD workshops together with the caregivers. We experienced, we should say, significant difficulties in working with commercial interests alongside our own research objectives. However, a detailed analysis of such organizational issues is not within the scope of this chapter (but see Chapter 16). (p.376)
(p.377) 11.6 Evaluation: Methodology
We rolled out the prototype in three different locations and tested it in real-life situations over a time span of 3–5 months. The locations included a household in which the husband is suffering from dementia (age 55), a care home with a focus on dementia care, and a special ward of a hospital.
Deploying the technology was anything but straightforward. Prior to the actual deployment, we conducted several semistructured interviews in each setting in order to obtain a detailed overview of their technology infrastructure and any specific conditions, so that we could make a customized deployment plan for each setting. In the institutions, we had at least two on-site meetings to inform management and ward nurses about the evaluation plan. Prior to our visits, all evaluation partners had tried to get information on GPS support technology on the Internet, but all had given up because of the poor quality of the provider websites in terms of providing information about the technical issues. The on-site visits were audio recorded, and field notes were taken.
Despite our detailed preparation, we still faced unexpected difficulties during the technology installation in each location. We had to be very flexible and creative to fine-tune the prototype so that it could be integrated into daily practice. For example, for the special ward in the hospital, we had to deliver an iPad that had a 3G connection, in order to access the monitoring website, because the Internet speed in that hospital was too slow to allow for serious roll-out of the prototype.
We visited the family and the institutions regularly every 2–4 weeks and were available 24/7 by phone in case of questions and problems. Altogether, we conducted twelve on-site visits and six telephone interviews, with the interviews typically lasting 1.5–2.0 hours. All the interview sessions were audio recorded with consent and later transcribed. During the evaluation, we kept in close contact with our testers, and all the emails and phone calls were documented in field notes. Furthermore, we asked the testers to fill in a media diary of their daily experience with the system. The diaries also worked as a basis for discussion in the on-site interviews. The data analysis was approached in the same as in the pre-study. We started with an open code system and regularly held internal analysis workshops.
11.7 Evaluation: Findings
11.7.1 The Settings: Two Institutions and a Family
The prototype system was evaluated in three locations, which were chosen because they enabled “real-world” evaluation without endangering patients: a hospital ward, an elderly care home for dementia care, and a family. The study thus had three different scenarios of use, where different experiences were reported.
(p.378) 11.7.2 Institution A: A Dementia Care Home
Institution A is a dementia care institution in a rural area. The care home is committed to following new dementia care philosophies, including giving the residents as much space as possible to be mobile on their own. Around the care home, there is large protected area in which the residents are allowed to walk freely. There is an alarm system attached to the main entrance, and patients with a special wristband, passing through the entrance, will trigger a phone call to the care staff. The manager of the care home is of the view that patients should be able to leave the area if they wish to, although care workers at the home are less liberal in their views.
Three young male volunteers, to whom the head nurse had handed the prototypes, tested our system. Interestingly, these young men were all IT familiar but saw older professional caregivers as “lay” users of such technology. The head nurse shared this view, saying: “older persons [meaning her colleagues] could not use this system, because in this institution they have only low experiences with technology and computers.” She emphasized this with reference to her colleagues’ general problems with care documentation work at the computer: “my colleagues already have problems with simply clicking the right things in our records.”
11.7.3 Institution B: A Hospital Ward
Institution B is located in a big city and is a big hospital and care complex. The ward in which we tested the system has a special focus on long-term care for persons with cranial–cerebral trauma and comorbidities such as dementia. Here, location-tracking services were welcomed, but worries were also raised because of the high mobility of the patient. In this case, a relatively young man, who used to be a marathon runner, suffered from severe dementia as consequence of a car accident. The ward is an “open ward,” which means that locking the doors is forbidden. This patient “escapes” regularly and is very difficult to manage as a result of his level of physical fitness. A specific limitation of the tracker was its low precision in indoor positioning, and this patient was often “lost” in the ward (e.g., once he was found in the basement, having spent hours in a disoriented state).
On the day we brought our prototype to the ward, we noticed that the Internet connection in the hospital was too slow for a sensible field test. As an alternative, we bought an iPad with a 3G data tariff so that the staff could use the iPad to access the Web portal. Two days later, when we visited the ward again, they told us that “the iPad is safely locked in the cabinet [so that nobody will steal it].” Because of the high mobility of patients and relatives in the hospital in general, they were extremely afraid of losing the costly device, and it was initially locked away unused. We then bought a protection case and a lock for the iPad so it could be securely attached to a desk.
The staff then started to use the system. Several days later, we received a phone call from our contact person—a nurse in the house—telling us that a patient had been lost for 20 hours and had been found the next day 30 km away from the ward. She told us that before this accident had happened, the patient had been carrying the tracker 24 hours a day but that the battery life of the tracker was inadequate. Although she had tried to keep the (p.379) tracker charged, she had no idea how the patient went out without triggering an alarm; she went on to say that “in this form we cannot trust the system.” After investigating the system, together with the nurse, we found out that the battery had died within the safety area, right before the patient left the house. What we learned from this case is that the system should send a notification when the tracker battery is low. After discussion with the ward, we deployed another tracker for the patient, so that the trackers could simply be exchanged, with there always being one fully charged. After this incident, the system has been used 24 hours per day; our contact person in the ward has reported several successful instances where the system has been helpful, and the staff members have started to trust the system more and more. The relatives of the patient also started to trust the system and grew dependent on it. The wife of the patient even made a carrying case for the device so that her husband can attach it to his belt and thus carry the tracker around more easily (see Figure 11.2).
Figure 11.2
11.7.4 A Family Setting
In this setting, the sufferer is cared for at home by a spouse. He, a former doctor, lives with his wife and three children aged between 15 and 20. Mr. C. walks the dog several times a day on short routes in the nearby neighborhood. The routes he walks along are well known to the family and are, according to his wife, “routinized.” Before he leaves the house, he tells his wife or children where he intends to go. They then estimate roughly the time he should return. It has already happened several times that the man was not able to return home on his own. That is why a volunteer from a local charity organization now comes three times a week to take him and the dog for a long walk. Mr. C., however, very much dislikes the company of the volunteer, because he considers himself to be still autonomous enough to walk on his own.
In our interviews with Mrs. C., she told us that our system has been extremely helpful for her. She began, she said, to rely strongly on the technology after only a few weeks. She used the system not only at home but also at work. She said that the system gives her peace of mind, as she can see on the map that her husband is walking on the regular route. But she appropriated the system in a way that preserves as much privacy as possible for (p.380) the husband. For example, she had not used the digital fence at all, as it felt too intrusive to her. And she slightly reduced the frequency of the tracker’s position report. She did not want to constantly track her husband; for her, being able to look into the system and know that he was safe was already a great relief.
11.7.5 Some General Findings across Cases
We identified some general issues affecting the acceptance of trackers. First, the size of the tracker was seen as a problem by the interviewees. Although the device is quite small (the size of a match box), dementia sufferers often dislike devices of any size attached to their body or clothes. Thus, caregivers would prefer to use something very small, like a thin bracelet, or something in the form of wristwatch or necklace, which—as a known artifact to the sufferers—would be better accepted by them. Given the need for battery size, that is, in current years, difficult to realize.
Given the demand for autonomy, “open house” philosophies mean that caregivers negotiate the freedoms of patients, where possible, to maximize them. “Digital fences” are, in principle, extremely useful in this respect. Professional caregivers, however, suggested an additional structuring of the feature into three zones: a green zone, a yellow zone (“be alerted, person has left the safe area”), and a red zone (“act immediately, he/she is in danger”). The family carers, unlike those in institutional settings, scarcely used the digital fence function at all.
The system was viewed as extremely useful in the institutional context even when it could not locate accurately indoors, because it helped refine search strategies. Thus, for instance, in the case of the former marathon runner, although the system could not tell the exact position in the building, it nevertheless indicated that the patient was not outside, which greatly reduced the search area, and thus made the search more targeted.
A similar benefit of the technology was perceived by Mrs. C., who argued that because the system allowed her to retrace routes her husband had taken, she was able to get a better sense of why her husband deviated from his normal route, thus reducing her anxiety. For example, one time her husband’s decreasing cognitive capability had led to a situation where he had ended up on a highway (Autobahn) construction site but had been unable to explain how he had found himself there. As Mrs. C. said: “We do not know even today why he had gone to this Autobahn construction site … Something must be happened that made him leave the normal route. It can drive you crazy that you do not know the reason why.” Now, with the technology, there is the option to at least to reflect on possible reasons for new path choices.
11.8 Discussion
11.8.1 Discussion of Design Implications
Overall, our proposed solutions have had a positive effect on the experiences of dementia sufferers, their families, and professional caregivers. Particularly, in two of our three test (p.381) sites, the professional and familial caregivers have grown dependent on the prototype and have shown active appropriation of the technological artifact. Having said that, the sheer complexity of the different situations that occasion concern, the heterogeneous nature of organizational and family routines, and the different moral/ideological commitments expressed by different parties underpin the need for solutions that are both very flexible and practical to implement. In the organizational context, it is clear that these complexities mean that support for collaborative searching and for the flexible definition of “boundaries” needs to be better implemented. Professional management of issues of autonomy, privacy, and safety are constantly negotiated and arranged in accordance with specific and local definitions of patient condition. Solutions must allow tailoring to meet these conditions. Another aspect our long-term and practice-based study shows is the significance of the shape and size of the tracker, as well as compromises that have to be made and discussed when deploying a practice-based evaluation study. The study also demonstrates that there is a great need for individual customization of the tracking devices in the form of jewelry, wristwatches, and so on.
In addition, technical support must fit with the established routines of family and institutional life. Constant monitoring from fixed positions is extremely difficult in many care institutions, where there are constant demands on time, and the need to be available in different locations. In family contexts, demands include the fact that carers themselves are sometimes elderly, or have other family or work commitments. Even professional caregivers can have problems learning new technologies, especially older caregivers. This was exemplified in the case of Institution A, where the prototype was not actively used because of this technology barrier. The relationship between technology appropriation and the low IT affinity of some caregivers had already been described, for example, in the article by Pot et al. 2012. Our study augments this problem sphere by describing additional aspects impacting appropriation, such as the high heterogeneity in care concepts and moral and legal standpoints, which also may cause a reluctance in the willingness to use IT in dementia care.
Nevertheless, it would be naive to imagine that technical solutions can solve all problems. As Rogers has argued,
while most projects are sensitive to the privacy and ethical problems surrounding the monitoring of people, they are not easy to solve and have ended up overwhelming UbiComp research. Indeed, much of the discussion about the human aspects in the field has been primarily about the trade-offs between security and privacy, convenience and privacy, and informedness and privacy. This focus has often been at the expense of other human concerns receiving less airing, such as how recording, tracking and re-representing movements and other information can be used to facilitate social and cognitive processes. (Rogers 2006, p. 410)
Our long-term field test shows several impacts of the monitoring technology on the cooperative and social processes of dementia care. For example, it allows the “lines of conflict” to be renegotiated. Concerns such as awareness vs. privacy and safety vs. autonomy can be differently managed given location-awareness support. To a large degree, the management of these concerns is a function of varying institutional and familial (p.382) arrangements. This is compounded by the evident fact that policy, especially in the institutional context, around “freedom deprivation” is often ambiguous.
The constant renegotiation of care philosophies is a complicating factor. With Dahl and Holbø (2012a, b) we see that new care philosophies, such as person-centered care (Kitwood 2001), are being used in many care institutions. However, the related practices are not clear-cut. Therefore, we—in a manner slightly different to that of Sugihara et al. (2013), who promote patient-centered care as “appropriate for applying the norm of human-centered design”—recommend looking more deeply at the different ways in which care theories are being applied in situated practices.
Thus, autonomy is not a fixed metric. On the one hand, as indicated, this points at the need for flexibility in design technologies in its functionalities and settings. Just as importantly, however, it points to ethical issues in respect of how the researcher positions his/herself in these developing ideologies. If we support changing views of patient care in organizational settings, are we not bound to have a view of how patients are treated in family settings? Can we be comfortable supporting highly “engineered” solutions like the one described above?
Having to work with a software company in the consortium caused further difficulties in conducting this research project. It was especially hard for us to transfer qualitative empirical results and design suggestions to the company. This discrepancy in design philosophies brought some friction to the interaction (see Wan et al. 2016). It is our view that agile development processes are much more suitable for environments of this kind. This insight is not always fitting with design approaches of industrial partners who are still strongly influences by traditional approaches in software engineering (Dachtera et al. 2014).
The need to customize artifacts as well as the need to take aesthetic aspects into consideration when designing products for the elderly, especially those in dementia care, has been stressed elsewhere (Wallace et al. 2012; Angelini et al. 2013). Similarly, our inability to extend the tracker to cope with “indoor” situations limited its perceived value in this design case study.
In conclusion, we set out to contribute to a better understanding of the subtleties and complexities entailed in the familial and institutional management of dementia sufferers with wandering tendencies. With a full description of a design case study (investigative pre-study, design, and long-term evaluation) we have established, we feel, a fine-grained basis for understanding how lines of conflict may occur for these patients and how a suitably flexible GPS locating system can aid in the resolution of such conflict. It is clear to us that technology alone does not provide a full assistive solution, and it is always mediated by varied ideological and practical considerations in different contexts. The heterogeneity of caregiving contexts means assistive solutions (both the technology and service around it) must be very flexible and creative, adapting to differing users’ needs in each specific context. Caregivers in our study found these things in very short supply.
Besides technological features, we also contribute to promoting a new ethos surrounding IT support for dementia management. A planned market roll-out of assistive technology in this sector requires detailed consideration of support for installation, education, legal matters, after-sales service (counseling, adaptation), and so on. The business model (p.383) of such a product needs careful thought since service before, at, and after sale is at least as important as the technology itself. Again, any recognition of the need to provide other forms of support to caregivers is almost entirely, absent from the philosophy of technology providers in this challenging context.
11.8.2 Methodological Reflections
In this section, we will discuss the investigation of care practices and sociotechnical design in the field of dementia care in relation to the theme of this book: practice-based design, its research framework, and grounded design (Wulf et al. 2015; Rohde et al. 2017; also see Chapter 1).
We conducted our project under the methodological lens of grounded design, which is based on design case studies and typically comprises an extensive empirical pre-study, a prototyping phase, and a long-term evaluation and appropriation phase. The field of IT for the aging society, and specifically dementia care, shows some specificities that we would like to emphasize for the pre-study and appropriation phases.
First, the grounded-design framework builds in its first phase on data gathering techniques such as semistandardized interviews or participant observation of practices for the formulation of initial design ideas. Under a practice-oriented research paradigm, the data to be collected is linked to the situated practices (Suchman 1987) of the target group (in this case, the persons with dementia, and when the disease progressed, the familial and institutional caregivers). In Reckwitz’s (2002) argumentation (also see Chapter 16), practice theory is a specific form of cultural theory, together with cultural mentalism, textualism, and intersubjectivism. In his view, these approaches differ according to the way in which they define the smallest unit of social theory: “minds, discourses, interactions, and ‘practices’” (Reckwitz 2002, p. 244). Reckwitz confesses that his heuristic concept may not satisfy the rich works of the practice theoreticians he refers to, such as Bourdieu (1977), Giddens (1984), and Schatzki et al. (2001); in addition, his heuristic differentiation between the cultural theory approaches is perhaps not entirely helpful for framing research and design work in the IT field for the aging society, and especially in dementia care. In particular, we do not see imposing a strict separation between practice and textuality, or between practice and discourse, as being helpful. We would suggest using a stronger link between discourse analytic approaches, which focus on symbolic representations, and a practice-theoretical lens, as this would favor the analysis of everyday practices, which comprise aspects of embodiment and materiality (Baumann et al. 2015).
Our study, as well as other studies in the field of IT for the aging society (Müller et al. 2015a, b; Schorch et al. 2016), demonstrate this in the following aspects. Beginning with the issue of access to the target groups (including primary end users (“the elderly”), secondary end users (relatives, familial caregivers, professional caregivers, care homes, etc.), and tertiary end users (e.g., welfare associations), researchers are often confronted with huge problems in communicating their research objectives and in getting the target groups interested. This is essentially due to the fact that all groups have a low familiarity with new media, as well as the fact that the design projects take place in a highly discursive (p.384) field, with different images of aging and with varying attitudes concerning the potential benefits of the use of new technology, as one measure among others, to assist the elderly in their activities of daily living. Our project in the field of dementia care makes these discourses highly visible: there are different (medical, sociopsychological) approaches and attitudes toward the concept of dementia and what the best treatment of persons suffering from dementia would be (Cantley 2001). The medical and psychological perspectives on dementia care have undergone a radical shift over the last three decades. The concept of personhood (inter alia, and prominently developed by Kitwood 2001) and the accompanying theory of dementia have had a profound influence on the development of new care concepts, by providing a philosophical base for the change in therapeutic approaches (Cantley 2001).
Looking at the care practices, our study shows that former approaches in dementia care, based on biomedical concepts, are still present, together with newer approaches such as person-centered care (Kitwood 2001), at least in the German context. The concurrency of the different care concepts has concrete manifestations in the attitudes and practices of the caregivers, which we found in both familial as well as institutional contexts. The strongest manifestation is visible in the concurrent usage of two different terms to describe wandering behavior in German: Weglauftendenz (the tendency to run away) and Hinlauftendenz (the tendency to run toward something). These two terms are strongly linked to ideological ascriptions and accompanying care measures (as well as in the estimation of the benefit or harm of an IT-support system), with the first being influenced by biomedical thinking, and the second by newer, personhood-oriented approaches. In our pre-study, we found similar differences in the attitudes and practices of caregivers.
This shows that actual practices are deeply rooted in educational programs—both the professional education of caregivers as well as in educational offers for familial caregivers at home—and their availability and acceptance.
This also means that these care practices, both in home care and in institutional care, are deeply rooted in questions of how the policy affects service developments, based on general conceptions of how a society treats persons with dementia and, accordingly, defines basic concepts such as autonomy, personhood, inclusion, and so on. Comparative studies on national levels pinpoint differences at societal levels: “Attitudes to dementia held by the general public, health and social care professionals, policy makers, relatives and others can influence the ways in which people view this set of conditions, their willingness to pay for medical treatments, and their willingness to see scarce tax or social insurance funds allocated to the support and care of people with dementia” (Knapp et al. 2007, p. 17).
Against the background of a deep entanglement of situated care practices in a highly discursive field, we would suggest not viewing the theoretical approaches of discourse analysis and practice theory as being mutually exclusive (as in Reckwitz’s heuristic), because neglecting the discursive field would lead to there being blind spots in the empirical analyses.
A second aspect of the pre-study phase in the design case study, specific for IT for the aging society, is a methodological problem that occurs in the beginning of a project. The (p.385) low tech-savviness of our target groups (in the case of the dementia care project, this was true for a large proportion of the caregivers, both in familial as well as in institutional, professional settings) urged us to think about methods that leveraged access to potential research partners to gain their willingness and motivation to give us interviews or let us participate in their everyday circumstances. We thus had to think about anchor points that would help them decide to cooperate with us—that is, to build up a common notional space of possibilities between the design team and the research participants. This led us to complement field study methods, such as interviews and participant observation, with action-research-based methods. In other settings in the field of IT for the aging society, action-research-based methods had proven helpful in developing such anchor points, via the early introduction of off-the-shelf products and engaging in common activities (such as experience-based PD workshops) to help develop device practices that would be meaningful and linked to individual interests and needs (see Müller et al. 2012, 2015a, b). In the study at hand, we were not able to use such an approach with our target group, people with dementia; however, it was equally important to help caregivers reflect on and discuss possible usage scenarios for a monitoring device. In the initial interviews, we discussed other off-the-shelf monitoring devices, and this discussion often led to deeper discussions. In the interviews with institutional carers, legal and ethical aspects opened up as themes that were further reflected upon. Thus, we found that our first inquiry for an interview or participant observation sparked further interest in a deeper reflection of the possible benefits, as well as the possible harm, our technology might provide.
Concerning G. Hayes’s ideas in Chapter 9, our approach to data collection in the pre-study phase is somewhat between that used in action-research projects and that used in the approach described by Wulf et al. (2015) for the design case study concept. In the field of IT for the aging society, it is important to use additional measures to gain access to the field and to interest and motivate potential research partners for project participation (see also Chapter 10). These measures aim at collaboratively identifying anchor points that then influence interest and motivation (in the best case) for a long-term participation. However, we would not say that these measures set the stage for a fully collaborative start of the project (e.g., with co-developing research questions, such as in action research). In our work on IT for the aging society, the first steps are often slow and careful in order to be not too overwhelming for the elderly (or younger but non-tech-savvy) persons.
A third aspect that shows some specificity for the field of dementia care in the context of data collection and (participatory) design is the challenge of communicating with representatives of the target group. Dahl and Holbø (2012b) discuss some strategies for how to involve persons with mild forms of dementia in interview settings, to give them a voice and prevent the caregivers from dominating the interview. The authors relate their work to newer care philosophies such as person-centered care (Kitwood 2001) as also do Sugihara et al. (2013), who say that this concept is “appropriate for applying the norm of human-centered design.” However, as we said in Section 11.8.1, it might not be enough for researchers to follow these philosophies, as they are not applied in all care practices and by all caregivers.
(p.386) The case of the couple where the husband suffered from dementia, discussed in Section 11.7.4, illustrates the complexity of such interview settings. We performed all interviews and meetings together with the couple. The husband suffered from only mild dementia, so we were able to ask him some questions. However, we only could ask him very simple questions and had to rely on his wife to fully understand the management of their everyday life, their routines, and their support needs. Even though we tried to integrate the husband very carefully into the interview situation, we had to accept that the wife was the one carrying all responsibility for both. Thus, even though we tried to give him a voice in the situation, we had to give more space to his wife, as she was the one who organized their everyday life and carried the huge responsibility that we were addressing with the technology. In addition, finally, the caregiver has to decide whether to cooperate with us, and this means that the researcher must negotiate the situation in a very careful and flexible way.
However, when working with families or professional caregivers of persons with dementia in progressed states where oral communication is no longer possible, researchers have to rely on substitutional interpretations. This may put the researcher in delicate and complex situations, as he or she must supplement what is being said with his or her own observations (if possible) and has to guess at what is really being said. In the case of the woman whose husband “engineered” her everyday life, the researcher felt awkward about the way this man treated his wife. This caused some difficulty for the researcher, as the question then arose as to whether there was a need to take additional action (e.g., to try to educate the husband about personhood-oriented ways of caring, or even to inform a local authority). In other interviews, relatives started crying, which also put an emotional burden on the researcher.
These examples demonstrate the need for further reflection on how to be well prepared for settings involving the care of chronically ill persons. This is especially important against the background of research projects that integrate university education.
11.9 Conclusion
In this chapter, we presented a practice-based design process of a GPS-based monitoring system to be used by persons with dementia and with a tendency to wander. GPS tracking, although a well-established technology, is rarely used in dementia care in practice. We investigated current care practices, IT design options, and the appropriation of GPS technology in dementia care and assessed the practical and ideological issues surrounding care to understand why. The design case study consisted of three phases: (1) a qualitative, empirical pre-study, (2) a PD and prototyping process, and (3) a long-term field evaluation and appropriation study in three environments. What comes to the fore is the need for IT design to reflect upon complex ideological and practical issues that form part of a moral universe where sensitivity is crucial.
Methodologically speaking, we propose some adjustments to the design case study approach by Wulf et al. (2015) in order to accommodate some specificities of design in the field of IT for the aging society and especially for the field of dementia care.
Our thanks to the persons who unhesitatingly provided us with insights of their challenging everyday and working lives and discussed their concerns, attitudes, and ideas in regard of technical aids with us. Special thanks to the self-help organization Alzheimer Selbsthilfe e. V. Köln.
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