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Keywords:

  • dementia;
  • wandering;
  • technology;
  • biomedicalisation;
  • pathologisation

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Understanding wandering
  5. Wandering as risky
  6. Restraining or guiding wanderers: two models of intervention
  7. Settings and methodologies
  8. Technological interventions: locked doors or motion detectors?
  9. The many faces of surveillance
  10. Conclusions
  11. Acknowledgements
  12. References

This paper focuses on surveillance technologies applied to wandering elders in dementia care facilities in the United States. Drawing on data collected in two long-term care settings, I examine how different forms of technology (e.g. locked doors and motion detectors) are used to monitor wanderers in the context of managing risk. In contrast to the locked facility that defined wandering as pathology, the care facility that defined wandering as purposeful and therapeutic improved wanderers’ sense of wellbeing and agency. The comparison of the two environments challenges the medicalisation of wandering and suggests a need to redefine approaches to safe wandering that incorporate technologies that monitor but do not confine residents. I argue that surveillance technologies such as locked doors dehumanise and frighten individuals by halting their ability to exit. In contrast, surveillance technologies such as motion detectors may offer increased quality of life and health benefits by allowing individuals to wander safely in the company of a care provider. Efforts to allow individuals to wander safely challenge both the medicalisation of this behaviour as well as the tendency to emphasise its riskiness.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Understanding wandering
  5. Wandering as risky
  6. Restraining or guiding wanderers: two models of intervention
  7. Settings and methodologies
  8. Technological interventions: locked doors or motion detectors?
  9. The many faces of surveillance
  10. Conclusions
  11. Acknowledgements
  12. References

This paper explores wandering behaviour in the United States and how its social construction as a high risk activity results in locked door, long-term care environments for individuals diagnosed with dementia. My empirical research compares two dementia care settings, each relying on different technologies to oversee wanderers, including locked and unlocked environments. I analyse residents’ experiences engaging with a locked door versus an unlocked door, showing that individuals’ encounters with each differ in terms of emotional response.

As the global population of old people continues to grow (Weinberger 2007), the number of elders diagnosed with dementia in the world and specifically in the United States is also increasing (Hebert et al. 2003). Cultural definitions of dementia vary throughout the world, and in some regions dementia is non-existent. Instead, societies explain cognitive change and loss as normal ageing (Herbert 2001). The diagnosis of dementia focuses on specific neuropathological changes in an individual’s brain. Alzheimer’s disease is the most prominent diagnosis explaining the aetiology of dementia in the Western world (Patterson and Clarfield 2003). Whatever the disease, ‘“wandering” is one of the most troublesome of behavioural problems which commonly accompany dementia’ (Hope et al. 1994: 149).

Technologies such as key coded doors are implemented in dementia care environments to protect the individual from getting lost, injured, or from death. In these environments, wandering is perceived to be a risky behaviour, requiring social controls such as locked doors. This paper examines the impact of locked door environments on residents and compares their experiences with those of residents with dementia living in an unlocked environment. The unlocked environment uses motion detectors to monitor the wanderers and regards wandering as a necessary activity for the individual with dementia. Comparing the two environments, I challenge the medicalisation of wandering and suggest a need to redefine approaches to safe wandering that incorporate technologies that monitor but do not confine residents.

Understanding wandering

  1. Top of page
  2. Abstract
  3. Introduction
  4. Understanding wandering
  5. Wandering as risky
  6. Restraining or guiding wanderers: two models of intervention
  7. Settings and methodologies
  8. Technological interventions: locked doors or motion detectors?
  9. The many faces of surveillance
  10. Conclusions
  11. Acknowledgements
  12. References

Although the aetiology of dementia is contested and unknown, the syndrome can include ‘wandering’. While not every individual living with dementia displays wandering behaviours, research suggests that between 37 per cent and 60 per cent of the population diagnosed with dementia will develop wandering behaviours at some point during the disease (Ballard et al. 1991, UK Alzheimer’s Society 2007). Research identifies wandering as a behavioural problem often requiring institutionalised interventions, such as pharmacological restraints (Oxman and Santulli 2003). Wandering is complex and ranges from exit seeking behaviour, including elopers and runaways (Lucerno 2002), to restless pacers and modellers (Oxman and Santulli 2003). Institutional and professional definitions of wandering (i.e. wandering as a behavioural problem or as an articulation of need) shapes the interventions chosen.

Exploring wandering behaviour from a clinical perspective identifies it as a behavioural problem requiring pharmacological and/or behavioural interventions. Research shows that both of these approaches have limited effects (Hughes and Louw 2002, Ballard and O’Brien 1999, Howard et al. 2001). In examining the ‘root causes of behavioural symptoms in persons with dementia’ (Whall and Kolanowski 2004: 106), the ‘need-driven dementia-compromised behaviour model’, proposed in 1996, suggests that behaviours traditionally viewed as ‘problematic’ require examination according to elders’ needs. By responding to their needs, care providers improve the quality of life of individuals who display specific behaviours such as physical aggression and problematic vocalisations (Whall and Kolanowski 2004).

By examining several areas of dementia-related behavioural problems, including aggression (Fisher and Swingen 1997) and disruptive vocalisations (Buchanan and Fisher 2002), attention is pointed toward environmental stimuli when examining these behaviours. The ‘behavioural problem’ is perceived as a means of communicating needs unable to be articulated ‘normally’ because of cognitive decline (Whall and Kolanowski 2004, Fisher and Swingen 1997). Research suggests the significance of environmental influence, even at the most severe stage of the disease, and recognises that the least restrictive environments help modify the unusual behaviours (Fisher and Swingen 1997, Buchanan and Fisher 2002).

Some individuals with dementia wander with agendas of escape, while others move aimlessly. The need to move results from heightened levels of anxiety, stemming from physiological, neurochemical or psychological sources (Emery and Oxman 2003, Dickinson and McLain-Kark 1998, Hope et al. 2001). These motives to move raise important questions about how architects design care environments to support or control wanderers.

Wandering as risky

  1. Top of page
  2. Abstract
  3. Introduction
  4. Understanding wandering
  5. Wandering as risky
  6. Restraining or guiding wanderers: two models of intervention
  7. Settings and methodologies
  8. Technological interventions: locked doors or motion detectors?
  9. The many faces of surveillance
  10. Conclusions
  11. Acknowledgements
  12. References

In discussions of public health issues including long-term dementia care, risk discourses are prevalent (Lupton 2005). The emphasis on risk transforms ‘probabilistic thinking’ into a political discourse (Douglas 1990). This transformation occurs because of the social pressure for cultural homogeneity. By identifying certain kinds of behaviour (e.g. wandering) as potentially dangerous, transgressions of social norms may be deterred. The rise of a risk society, that is, a society organised around documenting, imaging, and responding to risk, emerges as a way to manage the hazards and insecurities produced by modernity (Beck 1986, 2006). Science — in its many fields and disciplines — is often used to measure and manage risk. Wandering as a behaviour is medicalised, or turned into a medical problem in need of a medical solution. This legitimates social control efforts in the name of ‘protecting’ wanderers. Social control through the medical gaze encourages an environment of pharmacological surveillance and physical confinement (Foucault 1995) Wandering thus signals this turn towards a risk society, as well as the jurisdiction of medicine over defining and controlling behaviours labelled risky.

The assertion of riskiness requires the formation of socially designated experts who manage risk in what is claimed to be an objective fashion (Carter 1995). With regard to science and technology studies Brian Wynne notes:

A systematic examination of the ‘objective’ measures of danger arrived at by experts, will always remain essential, but the lingering tendency to start from this scientific vantage point and add social perceptions as qualifications to the objective physical picture must be completely reversed (Wynne 1982: 138).

Understanding the subjective nature of defining risk among those who wander, as well as identifying which professions and stakeholders define the risk, requires an explanation of the broader culture of wandering. By culture, I am referring to the home and institutional environments in which wanderers reside, as well as the interpersonal relations between residents, family, and staff. This broader cultural context normalises the pathologisation of wandering, positioning medical experts in powerful roles as gate keepers (Foucault 1995). The research in this paper explores the cultural and interpersonal contexts of wandering.

Wandering is a reason for institutionalisation; therefore, risk discourse plays a powerful role in this decision among professionals, families and individuals with dementia. Determination of the risk (Douglas 1990) is different depending on the degree of exit-seeking or outdoor engagement. Care providers view individuals who seek to be outdoors as ‘higher risk’ than those who walk aimlessly. Once institutionalised, wanderers are viewed as high risk by an institution’s administration, due to the potential for lawsuits (Noyes and Silva 1993, Coleman 1993, Robinson et al. 2007a). One risk for the wanderer is the ability to become lost, and due to cognitive impairment such individuals may be unable to survive in the outside world. Wandering elders with dementia, for example, have frozen to death and died because of dehydration and malnutrition (Mitchell et al. 2005, O’Connor et al. 1990, Ballard et al. 2001).

As multilayered as the ideas of risk discourse are, so too are the social and institutionalised responses to wanderers’ needs. The challenge to protect those who wander while respecting their rights is a ‘balancing’ act (Robinson et al. 2007a). Professionals, bound by duty as healthcare providers and the Hippocratic Oath, prioritise safety at the expense of personal rights. In contrast, families often feel that quality of life and independence are more important than safety. Although the perspective of research on individuals diagnosed with dementia is limited, preliminary studies suggest that these individuals want to experience life at whatever cost (Robinson et al. 2007a). In Robinson and colleagues’ (2007a: 397) research, for example, one respondent replied, ‘Sometimes we just go out…haven’t any idea where I am going…just enjoy the fresh air’. The manner in which risk is defined results in specific approaches to the social control of wanderers.

Restraining or guiding wanderers: two models of intervention

  1. Top of page
  2. Abstract
  3. Introduction
  4. Understanding wandering
  5. Wandering as risky
  6. Restraining or guiding wanderers: two models of intervention
  7. Settings and methodologies
  8. Technological interventions: locked doors or motion detectors?
  9. The many faces of surveillance
  10. Conclusions
  11. Acknowledgements
  12. References

The assumed risk the wanderer poses to him/herself and potentially to others heavily influences the design of the care environment. For this paper, one can separate the possible solutions to the ‘problem’ of wandering (i.e. the problem defined according to medical pathologisation) into two categories: medical and non-medical. Medical solutions to wandering include restraints (Capezuti et al. 1989), such as locked doors with keypads, camouflaged doors, geriatric chairs with trays to prevent standing, even cloth and leather limb restraints (Coleman 1993).

Besides physical restraints, pharmacological or chemical restraints are used to curb wandering behaviours. Using medications to sedate individuals lessens their tendency to ambulate (Zimmer et al. 1984). Medications prescribed for anxiety often lessen the wandering impulse, while also imposing side effects such as increased confusion and physical instability (Garrard et al. 1991). Studies suggest a direct relationship between pharmacological restraint use and falls among those with dementia (Gillespie et al. 2003, Tilly and Reed 2008, Rabins et al. 2007). As Coleman explains, ‘restraints are only exchanging one set of benefits and risks for another’ (Coleman 1993: 2114).

The second category of possible solutions to the ‘problem’ of wandering (or what I call non-medical) accepts the biochemical understandings of the body and mind but does not try to medicate or restrain this body. In this model, the physiological causes of wandering behaviour are understood as driven by neurochemical changes associated with dementia. The abnormalities in the circadian rhythm result in high levels of anxiety (Wu and Swaab 2005). The response to the anxiety increases ambulation or movement which alters an individual’s body chemistry. Wandering may be the body’s response to anxiety, since it offers the physiological release needed to lessen feelings of anxiousness. Thus, this approach steers away from physical and chemical barriers to the individual’s ability to move, and instead tries to accommodate it. Examples of accommodations include the use of technologies such as motion detectors and micro chips tracked by satellites, as well as educating staff about the physiological and psychosocial need to move. Using microchips, or what is popularly called tagging, involves placing a surveying device on an individual who wanders, to be able to locate the person through satellite technology (Hughes and Louw 2002, Altus et al. 2000). The tagging devices vary, and can include watches, bracelets, and devices sewn into clothing (Miskelly 2004, Welsh et al. 2003, Rasquin et al. 2007, McShane and Hope 1994). The companies that tag lost pets and vehicles, such as LoJack, are the same companies that are entering the business of tagging people (Saletan 2009).1 Both the United Kingdom and Australia are exploring the use of tagging to help oversee and protect the safety of wanderers (Barry 2007, Karvelas 2008, AAP News 2008).

Although some imagine tagging as the ultimate invasion of privacy, research suggests that the technique can lessen the caregiver’s stress by allowing individuals to roam without supervision (Welsh et al. 2003). In addition, some individuals may be able to remain at home and connected to their community longer before institutionalisation (Barry 2007, Altus et al. 2000). In contrast, critics argue tagging is using technology to replace people as care providers for these individuals (Barry 2007, Sturdy 2005).

Moreover, a person’s experience of dementia changes constantly and affects their abilities, which has an impact on what technologies are suitable. For example, an individual who wanders may be aware of safety precautions about cars and strangers, but if this awareness wanes, a chip in their watch or clothing will not protect them. Thus, technologies must be understood in context; their use can vary and have differing effects on roaming, depending on an individual’s abilities and the broader environment in which they are used.

Settings and methodologies

  1. Top of page
  2. Abstract
  3. Introduction
  4. Understanding wandering
  5. Wandering as risky
  6. Restraining or guiding wanderers: two models of intervention
  7. Settings and methodologies
  8. Technological interventions: locked doors or motion detectors?
  9. The many faces of surveillance
  10. Conclusions
  11. Acknowledgements
  12. References

This study compares data from two different dementia care facilities, specifically examining how wandering protections like locked doors and motion detectors impact on wanderers’ quality of life. To maintain confidentiality, I gave each site a pseudonym: Pine Tree Place and Oceanside Vista. Pine Tree Place is located in a Northeastern town of the United States. The observational unit, one of three in the facility, consists of approximately thirty residents. At the time of the study, the resident population was white and included a gender ratio of one male to three females. While the age, socio-economic status, and diagnosis of each resident was confidential, most of the population ranged in age from their late sixties into their nineties; these individuals lived with a range of diseases that resulted in dementia. The degree of dementia varied; the unit provided care from middle to late stage dementia.

The design of the unit incorporated a continuous walking loop around the perimeter of the living and dining space. Because of the potential for wandering behaviours, the unit was locked. The front entrance of Pine Tree Place had a key coded lock, as did the door to each unit within the facility. Any individual entering or exiting the units had to punch in a key code and wait for the door to open. At the back of the unit there was a key coded door that led outside to a patio and garden area. Enclosed by an eight-foot high, wooden fence, the patio also had a key coded lock on the gate.

At Pine Tree Place, I collected field notes for seven months, totalling nearly four hundred hours of daytime observation. One area of concentration concerned the residents’ attempted engagement with the outdoors and exits. I analysed field notes and coded the data based on resident interaction with key coded doors. Analysis of field notes was based on constructivist grounded theory and incorporated Atlas.ti, resulting in line by line coding, the generation of memos, and theme development (Glaser and Strauss 1967, Coffey et al. 1996, Charmaz 2000).

I collected a second set of data over 10 years of participant observation at a smaller facility (Oceanside Vista) specialising in dementia care, with a maximum capacity of eight residents. I was employed by this facility for ten years and received permission from the administration to conduct fieldwork. The resident population was white, with ages ranging from 63 to 95, and a male/female ratio ranging from 1:2 to 1:1 over the 10-year period. While each facility was expensive (ranging from $3,500 to $7,000 per month), private pay residents at Pine Tree Place paid approximately one-third more than their counterparts at Oceanside Vista. I observed approximately 30 residents at Oceanside Vista over 10 years. Of this population, approximately one-third wandered in a manner that displayed exiting behaviour.

The facility’s design included bedrooms on the perimeter and a dining and living space in the middle of the house. The outdoors was accessible through a front door leading onto a deck. Located in a rural setting, Oceanside Vista maintained walking areas which led to the ocean and up a wooded lane. Oceanside Vista did not incorporate locked doors or keypads. While wandering was a concern and reality for the facility, a motion detector alerted staff when someone entered/exited the front deck space by emitting a buzzing sound when engaged.

Like Pine Tree Place, the data collection at Oceanside Vista included fieldwork. I generated field notes during or following wandering incidents. In addition, I analysed video data of wandering. Oceanside Vista collected the data with the consent of the people granted Power of Attorney by the residents. I entered the video data and field notes into Atlas.ti for coding, memo generation and theme development. Observations at Oceanside Vista occurred during all shifts. I retrospectively analysed additional data for Oceanside Vista, integrating informal interviews with staff and discussions of wandering at staff meetings.

While employed at the facility, daily interactions with residents provided opportunity for observations of residents’ wandering behaviours. My position as both participant and observer offered insight into the complexity and subtleties of wandering behaviour, and the impact of alternative technologies on the residents at Oceanside Vista. Full disclosure was made to families before admission about the research conducted at Oceanside Vista. Residents did not appear to be affected positively or negatively by the research, neither by the observation nor the video recording.

Technological interventions: locked doors or motion detectors?

  1. Top of page
  2. Abstract
  3. Introduction
  4. Understanding wandering
  5. Wandering as risky
  6. Restraining or guiding wanderers: two models of intervention
  7. Settings and methodologies
  8. Technological interventions: locked doors or motion detectors?
  9. The many faces of surveillance
  10. Conclusions
  11. Acknowledgements
  12. References

In this study, I compare two different sites designed to provide for residents’ safety: Pine Tree Place and Oceanside Vista. Each site had different understandings of wandering and developed technological interventions that corresponded to these definitions.

The design and structure of Pine Tree Place emphasised the need to restrain wandering through key coded entryways and patio doors, as well as regular use of geriatric chairs with locked trays. Such restriction often increased residents’ anxiety. In my fieldwork, I observed incidents where concerned residents expressed a desire to leave the facility, often stating that they needed to go home, but were either unable to find the exit door, or when they found the door, they were unable to open it.

In one situation, a resident by the name of Pauline asks Lloyd, a staff member, ‘Can I get out here? Can I get out this door?’ She points to the door next to us. Lloyd says, ‘Um, hum’. Pauline continues, ‘Well, there must be a door somewhere for relatives to come in. I want to go home; can I get out this door?’ Lloyd tries to ignore her.

In another situation, Paula sees Naomi, a nurse on the site, and smiles and walks to her. Paula asks Naomi, ‘Where do I go to get out? I just want to go home’. Naomi says, ‘Well, I don’t know.’ Paula asks again, ‘Where is the door to get out?’ Naomi points toward the area she just left, ‘Over there, go over there and there are people around the corner’.

Pine Tree Place tried to support the idea of wandering by including large picture windows in the living room for residents to watch the outdoors. Although this strategy recognises the desire to be outdoors, it still emphasises the overall goal of restraint. Individuals can look outside; they cannot roam outdoors.

Beatrice is working with the physical therapist. The therapist follows her with the wheelchair and tells her how to sit safely in the chair. Beatrice gets to the outside door and says, ‘Can’t I sit outside?’ The therapist explains that it is damp and cold.

There was a door which offered access to the patio space. The door, however, was controlled by the key code.

Leanne is in the kitchen milling about. She asked if it was warm enough to go out. The cleaning person said, ‘Sure’. Leanne went over to the door, but it was locked. She said, ‘Oh damn’. Another staff person said, ‘The snow isn’t even melting yet. It is cold out there’.

Similar to the thwarted desire to go home, the residents’ inability to enter the patio or go outdoors increased their anxiety.

After pacing the hallways for some time, and trying several exit doors, Lester says, ‘Gee, I’d like to get out of this place. I don’t like it. We’re just caught right in here.’

Both by imagining there would be no exit, or by physically trying to open a door and finding it locked, residents’ needs could not be met and their behaviours suggested increasing anxiety levels. Residents often became panicked or angry and verbally expressed their frustrations at not being able to leave the building. The following quote illustrates this finding:

A resident named Alice walks by with her jacket on. Her friend Beatrice says, ‘Where are you going?’ Alice says softly, so no one can hear her, ‘I am getting the heck out of here’. Beatrice says, ‘How long, for how long?’ Alice looks at her puzzled. Beatrice says, ‘When will you be back, tonight? I’ll wait for you.’ Alice and Beatrice start pushing on the door next to me. It is locked and they comment on how it is stuck. Alice asserts, ‘I’ll get out of one of them’.

Many residents sat in their wheelchairs or milled about near the entrance door. When an individual entered or exited the unit, individuals near the door took notice of who was passing through. The observational data signalled that some residents who occupied the space near the front door might be seeking to exit through the door when it opened. It was not unusual to watch a staff or family member cautiously close the door behind them to prevent a resident from following. Some residents were more difficult to redirect and the person leaving would wait until the resident was not near the door. In my fieldnotes I wrote:

Lester finishes his meal and makes his way toward the door. The staff are going in and out of the door. They make sure that he is distracted when they pass through the door.

In my fieldwork, I observed how residents became upset when a door closed in one’s face and residents were not able to open it. In one instance I watched a physical therapist take a resident outside:

Rosie, another resident, asks if she can go out with them. She is told she can; however, Lester is quickly approaching and the door is shut. The original resident and therapist exit, but Rosie is left inside, with Lester who is trying to open the door.

During my fieldwork, I saw many examples of residents, both ambulatory and in wheelchairs, pulling with all their might to open the locked door to the outside. Sometimes when residents yanked on the doors, staff would be alerted by the noise and try to redirect the individual away from the door. For example, in one case:

Alice wheels over to the door to the garden. She pulls on it very hard, shaking it back and forth. She gets a very distressed look on her face. A young man who works on the unit walks by and she says, ‘I tried to get the door open’. He says, ‘The door you want is over there’ (pointing across the unit). Alice puts her head down and shakes it, slowly wheeling away.

The staff offered many explanations for the locked door, including stating there was no staff person available to supervise them while they were outside.

Janice tries the door but can’t open it. She turns to Linda, Barry’s wife, and says, ‘How come I can’t get out of here?’ Barry’s wife explains. Janice replies, ‘All these people in here and I have to have a nurse to go out!’ Janice walks over to Alice to tell her about not being able to get out. Alice says, ‘You know how things are. You can’t do anything you want to be able to do.’

When the weather was warm and dry and staff were available, residents were able to enter the patio area.

Unlike Pine Tree Place, Oceanside Vista serves a maximum of eight residents. The design is homelike, incorporating residents’ pets and personal belongings, and children of staff. In addition, the staff/resident ratio of one to four potentially provided residents with more attention and support than Pine Tree Place, where the ratio was typically one to eight. This ratio does not include other Pine Tree Place staff, most of whom appeared well versed in dementia care techniques, such as cueing (prompting residents to continue with a task) and redirecting. I witnessed repeated examples of maintenance, housekeeping and administrative staff engaging with residents in appropriate ways. While these additional staff played a significant role in improving the direct care of residents, their engagement was fleeting and unpredictable. They stopped when they had a minute to spare and moved on quickly to their other responsibilities.

In contrast to Pine Tree Place, Oceanside Vista outlined, in their mission statement and literature, a philosophical commitment to not locking doors on residents. Administrative staff counselled families on Oceanside Vista’s alternative approach to dealing with wandering, including incorporation of exercise and the use of motion detectors. Wandering was redefined as a necessary means of exercise for those living with anxiety because of illness. Oceanside Vista did not view wandering as a ‘problem’ that required social controls, but rather addressed it as a therapy that deserved recognition and support. Staff orientations, in-service training and meetings addressed scheduling walks for wanderers. In addition, staff worked together to accommodate a resident’s need to exit the building and wander. For example, the facility trained staff in techniques for exchanging responsibilities to manage the wanderers’ need to exit.

The structure of the facility was a necessary ingredient in redefining wandering beyond locking doors. To allow elders with dementia to wander, staff members were alerted when a resident left the building. The motion detector sounded a noise when an individual crossed in front of it. To ensure the wanderer’s safety and return, staff observed and/or joined the resident on their excursion. Most of the time, the favourable staff/resident ratio of one to four allowed staff to join individuals who wanted to wander. Rare incidents occurred when staff were unable to accommodate the needs of wanderers, such as during inclement weather. Obvious signs of heightened anxiety and mood changes typically resulted, which the researcher noted. My fieldwork showed, however, that even in poor weather, efforts to dress appropriately (rain gear, snow gear) and proceed with wandering occurred. In addition, arrangements were made for residents who repeatedly exited, requiring staff to exchange duties with co-workers to accommodate the wandering. Staff meetings devoted time to discussing how to grant the needs of multiple wanderers. If two or three residents exited at the same time, the staff expressed stress at helping multiple wanderers with varying abilities. If a wanderer needed extended time, staff members used cell phones to notify a co-worker of the situation.

A regular walking routine was incorporated at the facility, supporting the concept that exercise, especially walking/wandering, is therapeutic for anxiety levels among elders with dementia. Throughout the day, staff joined residents on outdoor walks. The data showed patterns for wandering among certain residents. For example, during the afternoon and early evening hours (when the sun began to set), many residents experienced ‘sundowning’ effects such as increased levels of anxiety and agitation. Sundowning is a clinical term used to describe a common set of behaviours associated with the syndrome, which can manifest themselves as restlessness and wandering (Sharer 2008). Accommodating these wanderers was less difficult since the behaviour was consistent and able to be scheduled. In line with observations made at Pine Tree Place, residents in Oceanside View believed they must get home to family, such as spouses and children to make supper. Individuals sometimes packed belongings into bags and left the facility.

During the middle of supper, Arnold stood up from the table and stated that he needed to get home. He went into a bedroom and carefully folded various items (including some slippers, magazines, and a stuffed animal) into a blanket. He tied the tips of the blanket so that items inside would be secured and tossed it over his shoulder. As Arnold headed for the front door he yelled, ‘Goodnight! I’m going home.’

As Arnold left the front terrace, the motion detector sounded, alerting staff that he was leaving the home. Staff responded by following him up the hill, which was roughly a quarter mile and then redirecting him to the house. When the staff needed to encourage him to turn around, his anxiety was typically lessened.

Whatever their agenda, the need to leave and feel purposeful in their process was present for all observed wanderers.

Donald walked up the lane every morning to get the newspaper. Donald explained, ‘I love the fresh air. It clears my head. I also enjoy reading the sports section.’

Periodically, Donald would be unable to get the paper because of changes in the schedule and he became irritable and frustrated over his inability to leave. As soon as Donald was able to get out, his mood improved dramatically and he was able to move on with his day. By being able to walk out the front door to the outside, Donald avoided the potential for conflict and anxiety inherent in trying to open a locked door.

Other exiting or wandering patterns included individuals who merely walked out of the front door onto the terrace and then back into the house.

Patrice spent the morning going onto the front terrace and pruning the flowers in the plant pots. She would open the exit door and walk onto the terrace, pull a few dead flowers from the plants in the window boxes and return into the house. This process of walking outside and returning to the inside of the house occupied much of her morning. Patrice’s daughter confirmed that she had been a gardener for much of her life and loved to ‘get her hands into the earth’.

Once again, this individual’s need appeared to be the simple ability to walk into the outdoors. The unlocked exit door surprised certain residents who had resided in locked door facilities before living at Oceanside Vista. Penny spent her first few days at Oceanside Vista opening and closing the front door. When encouraged to sit outside on the terrace, Penny replied, ‘Really? Are you sure it’s all right?’

While working, I observed dramatic reductions in anxiety before wandering compared with anxiety levels post walking. Most wanderers, who were unable to eat or sit because of anxiety, engaged in these activities after wandering. Individuals who had moved from locked-door facilities were often able to have anxiety medication levels reduced or discontinued. There appeared to be less need for the medications within the Oceanside Vista design. While data were not analysed on these observations, this area of research (the relationship between pharmacological restraints and ‘unlocked’ environments for wanderers) deserves further investigation.

Pine Tree Place and Oceanside Vista offered different models of long-term dementia care, as well as different perspectives on wandering. While each model defined wandering differently, the reasons given by residents for needing to wander were similar, including the desire to go home or to tend to their loved ones. At Pine Tree Place, pathologising wandering behaviour resulted in the perception of the behaviour as ‘high risk’ and the presence of locked doors on all the units. Although the facility tried to accommodate residents’ desire to be outside by providing large picture windows, one of the institution’s primary agendas (which was explicitly stated in the facility’s multiple day orientation) is to prevent cognitively impaired individuals from leaving the building.

During my observation period, I witnessed a few incidents where residents managed to violate the locked environment. In one situation, a resident who was not allowed outside in the garden area without staff followed another resident and their family outside. The family notified staff of the situation and they quickly redirected the resident into the locked environment. In another instance, residents congregated around the entrance door to the unit when emergency medical staff arrived to tend to a sick resident. The door was open while the crew and stretcher moved in and out of the unit. In all the commotion, two mobile residents sped through the unlocked door and out to the lobby where they were intercepted and returned to the unit by administrative staff. These occurrences were stressful for staff, heightening people’s anxiety and causing staff to confer with one another. Staff debriefed immediately following the incident, discussing how the incident could have happened and how to prevent it from happening again. Perhaps part of the need to prevent individuals from leaving the building related to a fear of legal action, a concern recognised and justified in the literature (Noyes and Silva 1993, Coleman 1993, Robinson et al. 2007a).

Because of the design of Pine Tree Place, the staff/resident ratio was wide enough potentially to create the chances for individuals to escape from the property. Even more significant, however, was the impact on each individual’s life. By not having enough staff available to cater to the needs of the residents, the redirection of residents and inability to engage with the outside world occurred regularly. Robinson and colleagues’ data support this finding in a response from a nursing staff member about risk management and resident access to the outside:

The gardens are there but you can’t go out because it’s too wet or too cold or we can’t spare the staff because you might fall (2007b: 398).

The medical model supports the focus on the behaviour as a product of the disease, rather than implications and needs of the individual. The psychological impact on the individuals appeared potentially harmful. Through observations of residents encountering locked doors, I witnessed multiple instances of increased problematic behaviours such as yelling and expressions of rage, or depressive behaviours of withdrawal.

Oceanside Vista defined wandering as a necessary ingredient of quality care for individuals with dementia. The design of the facility and the programming focused on integrating the need for movement and wandering. The scheduled walking programme promoted physical activity throughout the day and the open-door policy allowed residents to exit the facility at their discretion. Motion detectors acted to promote staff awareness of the need to observe and/or escort the individual in the wandering. The ability to move and exercise often lessened the anxiety levels at specific times of the day, such as in the late afternoon. The need for pharmacological intervention for anxiety was often reduced or discontinued.

The many faces of surveillance

  1. Top of page
  2. Abstract
  3. Introduction
  4. Understanding wandering
  5. Wandering as risky
  6. Restraining or guiding wanderers: two models of intervention
  7. Settings and methodologies
  8. Technological interventions: locked doors or motion detectors?
  9. The many faces of surveillance
  10. Conclusions
  11. Acknowledgements
  12. References

At Pine Tree Place, the pathologisation of wandering established a legitimisation for locked doors. ‘There is no doubt that the gaze, first described by Foucault, is being transformed into a virtual gaze, rooted in both technology and biomedical contexts’ (Sinha 2000: 304). Constant surveillance and control of space is viewed as essential to avoid potentially ‘high risk’ wandering. The nurses’ station at Pine Tree Place was strategically situated facing the entrance/exit of the unit. Foucauldian concepts of surveillance and Bentham’s panopticon (Foucault 1995) were visible throughout the facility. For example, residents at Pine Tree Place congregated near the entrance/exit. In doing so, those who were observers (medical professionals) and the observed (residents) shared in surveillance behaviours. It was typical to witness residents surveying the whereabouts of other residents with respect to the entrance/exit. My observations suggested that residents, staff and even family experienced the effects of the Benthamian panoptic principle, whereby the observer and the observed were all prisoners behind the locked door of the unit (Foucault 1995, Holmes 2001).

Motion detectors at Oceanside Vista also use surveillance but to a different end. Inherent in the presence of motion detectors is the understanding that wandering is not safe alone and requires support. An individual engages in wandering when the motion detector is triggered. The ability of the individual to leave and enter the outdoors recognises the potential human need to move beyond confines of enclosed space, not locked behind doors, nor struggling to open a locked door. The individual’s physical and psychological transition to heightened levels of anxiety and panic is challenging to witness. While the examples in the data depicted elders who did lose control when they could not exit, the wanderer, who was able to move out of the setting into the outdoors and move without restraint, regularly appeared less psychologically traumatised.

Motion detectors allow for a redefinition of ‘risk’ as it applies to the wanderer. The accommodation requires surveillance or observation, but from a less hierarchical and constraining presence, reducing pathologisation. Through a combination of human and technological support, a partnership can form between wanderer and care provider. While the wanderer can benefit from exiting, so too can the care provider, in terms of exercise, an equalised relationship, and interpersonal interaction. Wanderer and care provider often engage in conversation and build relationships during the wandering. The developing relationship and engagement between wanderer and care provider potentially works to lessen the pathologisation of the behaviour. Rather than observer and observed being locked into buildings, the wanderer and care provider are liberated.

Conclusions

  1. Top of page
  2. Abstract
  3. Introduction
  4. Understanding wandering
  5. Wandering as risky
  6. Restraining or guiding wanderers: two models of intervention
  7. Settings and methodologies
  8. Technological interventions: locked doors or motion detectors?
  9. The many faces of surveillance
  10. Conclusions
  11. Acknowledgements
  12. References

Instead of pathologising wandering as a component of the biomedicalisation of dementia, redefining wandering as purposeful and therapeutic in long-term dementia care may create more elder-friendly environments of care that focus on the needs of the individuals who wander. This paper shows that creating ‘unlocked’ facilities is possible through incorporating technologies, such as motion detectors and cell phones; however, changes in staff/resident ratios must also accommodate the need for staff to wander with residents. While some facilities may be unable to acquire additional staff, perhaps staff employed for housekeeping or maintenance might be able to support the wandering by spending time with residents out of doors. Being outdoors and exercising does not simply support residents: it is an added benefit for staff as well. To understand the full impact of the different effects of technologies, further research is needed on similar environments (specific to size and staff/resident ratio).

By comparing the technologies of locked doors and motion detectors in context, this paper shows that distinctions exist between surveillance technologies that chiefly engage in social control and surveillance technologies that encourage greater independence and interpersonal interaction between staff and resident. Instead of stigmatising, medicating, or creating physical barriers to wandering, facilities can find ways to support roving in safe, healthy ways. Such practices, though, require more investment in staff and maintaining a better staff to resident ratio.

While less institutionalised long-term care environments are being developed for elders who are cognitively competent within the United States (Thomas 2004), developing new environments for cognitively impaired elders is more limited. Moving away from large-scale, locked door, institutional models of long-term care, which encourage restraint forms of surveillance and heightened anxiety for staff and residents, to facilities with motion detectors and staff guides, may offer care that addresses wanderers’ desires (as well as their caregivers’ or staff’s needs). Redefining the concepts of dementia care, wandering, and risk management beyond pathologisation requires a rehumanisation of the wanderer. Allowing the wanderer to wander (with the help of motion detectors and staff guides) may empower a person who has been dehumanised through the pathologisation of dementia and its associated (wandering) behaviours. Researchers and facility designers should explore the complex selfhood as embodied by those living with dementia. Such moves go beyond the biomedical model to ‘treat’ dementia and offer the possibility of what Kitwood (1997: 133) calls the rehumanising process of ‘personalisation.

Throughout Kitwood’s work (1997), the call for a cultural transformation encourages recognition and engagement of individuals with dementia. This paper shows that wandering is another area that can be redefined and promoted (with the support of technology) in an attempt to further this cultural transformation. Further research should be conducted to address the options available to larger facilities with fewer staff. Programmme development within such facilities is a starting point from which to change the culture of wandering. The staff’s perception of wandering is critical for how it is addressed within the facility. It involves redefining wandering as necessary and vital to the health of the resident, rather than a problem behaviour which must be controlled. Providing an unlocked environment in which the resident and staff can wander together is also essential to deconstructing the pathology of wandering and encouraging supportive relations between staff and wanderers.

Footnotes
  • 1

     Currently in the United States, tagging dementia residents in long-term care settings is limited, such as Oatfield Estates in Oregon (Shapiro 2006). The Indiana legislature is conducting feasibility studies of GPS tracking for community dwelling dementia patients (Weidenbener 2009). Twenty residents living with dementia in the Thames Valley and Somerset areas of England are participating in a two-year effectiveness study of GPS tracking (BBC News 2009).

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  5. Wandering as risky
  6. Restraining or guiding wanderers: two models of intervention
  7. Settings and methodologies
  8. Technological interventions: locked doors or motion detectors?
  9. The many faces of surveillance
  10. Conclusions
  11. Acknowledgements
  12. References
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