Introduction
An interdisciplinary literature identifies tensions between mobility and immobility in the organisation of late modern societies. Technologies of movement have transformed every aspect of economic, political and social space (Kaufmann Reference Kaufmann2010), allowing people, objects, information and ideas to ‘flow’ across hitherto constraining boundaries at local and global scales (Urry Reference Urry and Turner2009). In popular imaginaries, the concept of mobility is predominantly positive in connotation and is commonly equated with progress and freedom (Cresswell Reference Cresswell2006; Urry Reference Urry2002). In practice, however, the benefits of mobility are unevenly distributed, often constraining and potentially disrupting human agency. Structural forces impinge on everyday lifeworlds, resulting in ‘too little movement or too much, or the wrong sort or at the wrong time’ (Sheller and Urry Reference Sheller and Urry2006: 208). Despite the promise of democratised technologies (Borup et al. Reference Borup, Brown, Konrad and Van Lente2006), the spatial experiences of disadvantaged groups continue to be diminished by poverty, social exclusion, disability or infirmity (Atkinson and Jacobs Reference Atkinson and Jacobs2010).
Amongst the most spatially compromised of those disadvantaged by poor health are people with dementia. Dementia is an umbrella term (see Killick and Allan Reference Killick and Allan2001: 3), denoting a range of devastating, incurable, and ultimately fatal diseases and conditions, which primarily affect people over the age of 65. The most common of these is Alzheimer's disease (Alzheimer's Disease International 2010). Symptoms vary between individuals, but typically include memory loss, cognitive confusion and disorientation, as well as difficulties in verbal and non-verbal communication. As the condition progresses, aspects of mobility become increasingly problematic for people with dementia, reducing their ability to function autonomously in domestic and public spaces. Within the home, they become more prone to fire, falls and other accidents. Outside, they can become disoriented and lost. As a consequence, community, institutional and scholarly discourses tend to frame the unregulated movement of people with dementia primarily in terms of risk (Tierney et al. Reference Tierney, Snow, Charles, Moineddin and Kiss2007). Concerned family members and carers keep a close watch on care recipients and seek to confine the range of their mobility to within the home (Tirado, Callén and Cassián Reference Tirado, Callén and Cassián2009). Despite government policy support for ‘ageing in place’ in developed countries such as Australia (Australian Institute of Health and Welfare 2012) and a corresponding spatial shift in care provision from the institution to the private home (Tinker Reference Tinker1997), there remains ‘constant pressure exerted and experienced to admit this vulnerable service user group of older people with dementia to “safe”, “protected” residential care. This may be at odds with the idea of choice, the espousal of person centred care and the perceived wishes of the service users themselves’ (Waugh Reference Waugh2009: 220).
Population ageing and a trend towards single-person households in developed countries (Klinenberg Reference Klinenberg2012) have resulted in many older people living alone, either by choice or necessity. Despite the apparent risks, many people in the early to moderate stages of dementia prefer to remain in their own homes (United Nations Economic Commission for Europe 2010), and are able to do so for longer with appropriate support (Gilmour, Gibson and Campbell Reference Gilmour, Gibson and Campbell2003; Kilbride and Nagy Reference Rubinstein, Kilbride and Nagy1992). People with dementia living alone are a sub-population with particular needs that require targeted interventions (Nourhashemi et al. Reference Nourhashemi, Amouyal-Barkate, Gillette-Guyonnet, Cantet and Vellas2005). In view of their increasing numbers around the world (Alzheimer's Disease International 2010), the development of infrastructure and services that accord with their preferred practices and capacities has become a matter of urgency. Nevertheless, they remain an under-researched group, and little is known about their mobility practices as they go about their daily lives in domestic and public space (De Witt, Ploeg and Black Reference De Witt, Ploeg and Black2009). Drawing on interdisciplinary theory, this paper contributes to addressing this deficiency by examining the spatial experiences, perspectives and priorities of seven people with mild to moderate dementia living in single-person households.
Theoretical framework
Two interconnected interdisciplinary concepts, ‘the will to mobility’ and the ‘life-space’, inform our interpretation of the data. Both are of particular utility for understanding the everyday physical and symbolic ‘mobilities’ (Urry Reference Urry2002) of people with dementia. As elaborated below, ‘the will to mobility’ provides the stimulus for meaningful action, and the ‘life-space’ shapes the material and symbolic parameters of that action.
The will to movement/mobility
The impetus to move in or through space is fundamental to the human condition (Abernethy et al. Reference Abernethy, Kippers, Hanrahan, Pandy, McManus and Mackinnon2013), and the subjectively perceived sensation of bodily motion is perhaps ‘the basic modality by which people recognize themselves’ (Rose Reference Rose2003: 118). As the 18th-century French philosopher Maine de Biran observed, ‘our inner experience of a causal relationship between the will to movement and bodily motions is so vivid and direct that it transcends the possibility of reasonable doubt’ (in Schwartz Reference Schwartz, Libet, Freeman and Sutherland1999: 133). Using the same terminology, Gray (Reference Gray2007) notes that ‘will’ operates in living creatures, not as an abstraction, but as an embodied force, derived and inseparable from the mental and physical sensations of embodiment. ‘At its most elementary level’, writes Gray,
the will is feeling in motion; it is the feeling of movement: the perceived movement of the body's internal processes or the feel of motion directed towards the external world. It is a feeling often perceived in contrasts: the feeling of action contrasted to the feeling of inertia; the feeling of choice contrasted with constraint, resistance, or oppression. Feelings of motion are embodied sensations. (2007: 4)
Gray (Reference Gray2007) goes on to note that distorted perceptions of the environment, such as those experienced under the influence of addictive drugs, can disrupt expressions of the will to movement, leading to frustration and violence when the will is thwarted. This insight is also useful for understanding the perspectives of people with dementia, whose capacity for physical mobility typically outlasts their cognitive capacity to interpret their surroundings in a coherent and functional manner. Disoriented ambulation may result from confused interpretations of the environment or be a bodily expression of anxiety (Wigg Reference Wigg2010). The vocabulary of transgression used in institutional and scholarly discourses indicates that the mobilities of people in the later stage of dementia often resist and collide with the normative ordering of wider society. Such individuals are said to ‘wander’, ‘elope’ or ‘abscond’ (Chung and Lai Reference Chung and Lai2011; James Reference James2011) when their will to movement prompts them to seek exit from institutionally defined secure spaces. By implication, the preferred demented subject is compliant, contained, and therefore safe and manageable.
For people with dementia, as for all adults in late modern societies, the capacity for corporeal movement across extended space, or ‘automobility’ by means of private cars (Featherstone Reference Featherstone2004), is a foundational symbol of independence and control, which is deeply affected by the possession or absence of a driver's licence. As Featherstone observes,
[t]he term automobility works off the combination of autonomy, and mobility. In its broadest sense we can think of many automobilities – modes of autonomous, self-directed movement. The promise here is for self-steering autonomy and capacity … encapsulated in vehicles which afford not only speed and mobility, but act as comforting protected and enclosed private spaces … something which also speaks to powerful cultural dreams of adventure and freedom: the capacity to go anywhere, to move and dwell without asking permission, the self-directed life free from the surveillance of the authorities. (2004: 1–2)
The inevitable loss of their driver's licence as symptoms develop can significantly curtail the mobility of people with dementia, as their needs are less well addressed by alternative formal and informal transportation structures (Taylor and Tripodes Reference Taylor and Tripodes2001).
On a more optimistic note, imaginative travel through space via film and television is also a regular feature of the late modern leisure experience (Sheller and Urry Reference Sheller and Urry2006; Urry Reference Urry2002), offering opportunities for fantasies of mobility to far-away places and a sense of co-presence with distant and diverse others. For people whose social networks are diminishing, it can afford vicarious proximity to people with shared interests and expertise, and empathic participation in valued activities.
In an online blog, the sociologist Mark Featherstone (Reference Featherstone2010) introduces a related term, ‘the will to mobility’. Featherstone refers, in passing, to a ‘kind of hyper-individualism produced by the desire to move’, whereby ‘the potential sociability written in the form of the global network continually collapses into a kind of manic individualism’. Despite the current preoccupation of the social sciences with mobility studies (Cresswell Reference Cresswell2010), however, the concept of ‘the will to mobility’ remains under-theorised. Literary scholars, such as Hutchinson (Reference Hutchinson1992) and Ali (Reference Ali2012), afford the term a more positive valence. Ali (Reference Ali2012) notes that the existential imperative of corporeal mobility has been given artistic expression since ancient times, suggesting that the ‘will to mobility’ may be situated at the very core of, and be protective of, the subjective experience of personhood.
Mobility is the opposite of coercive moving … The will to mobility … is not only an instrument for combatting despair but also a dynamic matrix from which values such as dignity and self-esteem are derived … [Artistic] works project the state of corporeal enchainment as the most horrendous form of dehumanization. Fixation, whether literal or metaphorical, is tantamount to the loss of valued subjectivity. (Ali Reference Ali2012: 74–5)
For Hutchinson, the will to mobility, as expressed in the imaginative writings of Montaigne, reveals the intrinsic value of travel that might be perceived by others as purposeless, and the validation to be found in ‘sensations of simply moving along, exerting oneself, and experiencing things en route’ (Hutchinson Reference Hutchinson1992: 87). Expressed in this way, the will to mobility does not require uncompromised cognitive capacity in order to be actualised. This recognition has implications for understanding the spontaneous mobilities of people with dementia.
The examples above suggest that ‘the will to movement’ and ‘the will to mobility’ are alternative names for a similar cluster of ideas, namely that movement is a fundamental human imperative, is inseparable from embodiment, and is constitutive of human identity and being in the world. We have elected to use ‘the will to mobility’ in our own analysis.
The life-space
The ‘life-space’ concept was introduced by the psychologist Kurt Lewin (Reference Lewin1952) and has been developed in a wider interdisciplinary literature. The term denotes the total environment subjectively perceived and experienced by an individual (Miel Reference Miel1992). Infirmity and diminished social interactions often compromise mobility in later life, leading to constriction of the life-space and an intensified focus on the home as a site of meaning and personal identity. Hodge (Reference Hodge2008) notes that the life-space expands with age and personal development, but contracts in late life, due to the effects of declining health on the ageing body. Smaller life-spaces have been associated with poorer self-rated health and psychological wellbeing and diminished social relations (Murata et al. Reference Murata, Kondo, Tamakoshi, Yatsuya and Toyoshima2006). These observations have particular resonance with the ‘shrinking worlds’ of people with dementia (Duggan et al. Reference Duggan, Blackman, Martyr and Van Schaik2008). Rowles (Reference Rowles1978), however, warns of the dangers of over-simplification inherent in equating lifespace with geographical terrain. As Hergenhahn explains,
[a] person's life-space consists of all influences acting on him or her at a given time. These influences, called psychological facts, consist of an awareness of internal events (such as hunger, pain and fatigue), external events (restaurants, rest rooms, other people, stop signs and angry dogs) and recollection of prior experiences … The only requirement for something to be a psychological fact is that it exist in a person's awareness at the moment … [The life-space] also reflects imaginary events. If a person believes he or she is disliked by someone, that belief, whether true or not, will influence his or her interactions with that person. If we believe we are incapable of doing something, we will not attempt to do it. (2008: 478)
Life-space and mobility are inextricably linked. Within each individual's life-space, symbolic and material entities operate to enable or offer resistance to mobility (Fuchs Reference Fuchs, Lohmar and Brudzinska2012). Clutter, for example, can inhibit mobility by inhibiting wayfinding in adults of all ages (Barr Reference Barr2002), but can convey an air of ‘cosiness’ to unfamiliar surroundings (Morley Reference Morley2000). Under some circumstances, it can also serve a supportive function for elderly people (Lutz Reference Lutz, Schillmeier and Domènech2010). The function and meanings of dust, however, are less ambiguous and reflect the normative ordering of society. As a signifier of personal control and a central component of the gendered moral economy of households, the management of dust operates to fend off discrediting challenges to valued identities based on competence and autonomy (Fine and Hallett Reference Fine and Hallett2003).
In its focus on the subjective parameters of human experience, the life-space concept also accords with the sociological theories of Schutz (Reference Schutz1962) and Thomas and Thomas (Reference Thomas and Thomas1928). Schutz (Reference Schutz1962) held that everyday ‘lifeworlds’ are constituted by meanings, which are in turn organised by common-sense reasoning, taken-for-granted realities and moral–expressive interactions. The psychological components of lifeworlds serve as a source of reassurance and identity maintenance, but typically elude conscious awareness until such time as they are disrupted by external stimuli. The ability of individual lifeworlds to sustain identity is not entirely dependent on uncompromised cognitive capacity, however. Millett (Reference Millett2011: 510) notes that even in the presence of severe cognitive decline, people can draw upon intact emotional capacities to ‘react to, engage with, and co-create a life-world’.
The theorem of Thomas and Thomas (Reference Thomas and Thomas1928) posits that ‘if men define situations as real, they are real in their consequences’. Their contention was that humans act according to their own ‘definitions of the situation’, rather than in response to any objectively existing reality. As dementia progresses, definitions of situations become increasingly at odds with those around them, yet people with dementia will persist in behaving according to those definitions. Long-dead people and demolished places may continue to exist in their subjective experience as material realities. If a person with dementia believes that a deceased parent still exists, for example, that belief will be real in its consequences in that he or she will take action to seek out that parent.
We have elected to use the term ‘life-space’ rather than ‘life-world’ in the following analysis, because of the primacy it affords to spatial aspects of experience and its capacity to capture the immediacy of psychological perception, rather than the long-term, consistent patterns of thought that are more characteristic of those who are not cognitively impaired.
Methodology
We conducted an exploratory study in three Australian cities in late 2011, with the aim of gaining a deeper understanding of the everyday lives and unmet service needs of people with dementia who live alone. All procedures involving human subjects were examined and approved by an approved university ethics committee prior to the commencement of the project. The wellbeing of participants was prioritised at every stage of the data collection process. An inductive, qualitative methodology was employed to gain deeper insights into the experiences and priorities of our target group.
Seven people living in single-person households, who had been identified by service workers as having a diagnosis of early to moderate dementia, were recruited through an advocacy service and an aged care service. All are identified in this paper using pseudonyms. Participants’ ages ranged between 48 and 85 years and all but one (‘Eric’) were from English-speaking backgrounds. A familiar service worker explained the purpose of the study and discussed the content and implications of the information sheet, emphasising the voluntary nature of participation. When interest in the study had been assured, the interviewer accompanied the worker as an observer on visits to participants, again discussing the information sheet and answering any questions.
The first author conducted audio-recorded, semi-structured, in-depth qualitative interviews of 25–45 minutes duration in participants’ homes, while a research assistant, with participants’ prior permission, took notes on the layout and contents of the house and its surroundings. Questions were general and open-ended, and foregrounded residential satisfaction, an under-researched aspect of ageing in place (Rioux and Werner Reference Rioux and Werner2011), rather than the effects of the disease on individuals’ lives. In keeping with previous research prioritising the specific, situated needs of participants with dementia (e.g. Brannelly Reference Brannelly2006; Surr Reference Surr2006), consent was verbal, audio-recorded and ongoing, rather than written and obtained prior to commencement. All procedures involving human subjects were examined and approved by the Tasmania Social Sciences Human Research Ethics Committee (reference H011936) prior to the commencement of the project. The interviewer was vigilant to any expressed or implied indication that participants were tiring, or were in any way uncomfortable with continuing with the interview.
The recordings were transcribed and examined for recurring themes addressing aspects of the home (including contents and surroundings) considered personally salient by individual participants. Both researchers held regular meetings to discuss emergent themes and to ensure that they accurately reflected participants’ expressed perspectives.
Our data confirmed accumulating evidence as to the competence of people with mild to moderate dementia to provide useful insights into their own experiences (Glidewell, Johnston and Thomas Reference Glidewell, Johnston and Thomas2012). However, language and concentration difficulties that are symptomatic of dementia were evident in their hesitations, digressions and unstructured speech (see Kinney, Kart and Reddecliff Reference Kinney, Kart and Reddecliff2011). Direct quotes were therefore slightly edited in some instances, in order to preserve coherence and present a respectful account of participants’ responses (Macquarrie Reference Macquarrie2005). Names and other identifying data were changed to preserve anonymity.
Findings
Participants’ accounts of their everyday life-spaces were permeated with expressions of the will to mobility, the satisfactions gained when it was realised, and the frustration or distress felt when it was thwarted. Various aspects of their life-spaces were seen to enhance or constrain their mobility practices. In keeping with previous studies (see Jansen Reference Jansen2012), all respondents appreciated their current housing, regardless of its drawbacks, for the security and continuity it provided. However, most framed their houses and their surroundings not as static entities, but as ‘a means of fulfilment that allows other activities to take place’ (see King Reference King1996: 35). Four inter-related aspects of domestic mobilities and immobilities emerged from our thematic analysis of the data. These were access to public space, social distance and proximity, changing meanings of space and objects, and imaginative co-presence.
Access to public space
A crucial aspect of the private dwelling for all but one of our participants was the access it afforded to public space. In the absence of this feature, the home was experienced at best as a benevolent space of confinement and at worst as a site of personal extinction. The disruption of their automobility through the inevitable loss of their driver's licence has particular symbolic as well as practical resonance for people with dementia, who must endure the progressive diminution of most of their valued freedoms and competencies. Two participants, Eve and Wayne, gave no reason for the absence of their licence or car, but suggested that they would be restored to them in the future. Olive, who was aged in her eighties and lived in an outer suburb, likened her own desperate situation to that of the thylacine, an extinct Australian animal. Her access to public space, where she had once pursued her interest in ballet, music and other aesthetic pleasures, was further compromised by public infrastructures that now enabled only the automobility of others. She reported feeling dismayed, frightened and sometimes overwhelmed by her home's immediate surroundings, which had altered in ways she had not imagined when she had first bought her property.
Olive: My car's sitting out there. I want to drive my car again. I want to go to the West Coast and I want to be able to get in the car and go to the shops to get a pint of milk or something. I feel trapped. I think of that thylacine going up and down the cage. Poor thing, it's trapped there and that's where I feel I'm trapped. I can't walk up to the shop.
Interviewer: It's too far?
Olive: No, I just can't do it. It's not far. I could throw a stone up there but I just can't do it. I remember the great excitement when they were going to build three houses in [a nearby street] and look at it now! It's crazy! When I bought this place, that [a group of apartments behind her house] was like a park. It was beautiful, [with] flowers and lovely fruit trees. The traffic belts around here. The buses will push you off the road and it's really not safe. That spoilt it, all that traffic.
By contrast, James, Eve and Eric lived in areas that were more hospitable to mobility by means of public transport and walking. People with dementia experience a destabilisation and progressive decline of the spatial capital, or ‘motility’ (Kaufmann, Berman and Joye Reference Kaufmann, Bergman and Joye2004) that they have acquired throughout their lives, but, as an embodied skill, the capacity to explore the environment on foot endures. For the present time, Eric continued to enjoy the freedom of movement made possible by accessible public transport. James, who described himself as a gregarious person, experienced a sense of satisfaction and belonging as he walked for hours at a time around his leafy neighbourhood.
I just love the look of the place. The people are nice. I just feel at home. I enjoy getting out and about and do a lot of walking, getting outside. I seem to feel better with myself. I like people, but I just like to get out there and just move around. I love the walking. I walk about four days a week. I love trees. (James)
I'm quite happy to [go out]. I use my bus card, going all [places]. Down here, within a radius of 100 metres, I can do everything. Dentist, chemist, doctor, bank, all there. It's amazing. I'm 100 metres from the beach. I couldn't be here in a better place. (Eric)
[The house] is in a good area and [the shopping centre] is just down at the bottom of this street. You can go there and do anything you like, buy anything you like … I walk a lot myself in this area, but I just keep in this area and I finish up in my place. (Eve)
Connie's situation was different, in that her dementia had progressed to a point where she now recognised her need to move into residential care. At the time of her interview, Connie was in her mid-eighties and lived in a detached house in the suburbs. Although she had always found preparing and posting correspondence a meaningful and rewarding activity, the walk to the local post box had recently become frightening, due to her cognitive confusion. Her feelings of insecurity were compounded by her association of environmental cues, such as poor lighting, with threatening situations she had encountered navigating public space on her way to night classes held at a technical college in post-war inner Sydney. These had included the unwanted attention of American soldiers seeking the company of young women (for an historical account of this phenomenon, see Damousi and Lake Reference Damousi and Lake1995).
When I read about different things, people mugged in the streets and things like that, I realise that that was a terrible thing when I was going through night-time Tech. If they had put a few lights along the road it would be very nice, but lights were always out because I think people shot things at them and made the place dark. We [young women] had Yanks, morning, noon and night everywhere and they were a threat … There's only one or two lights in this street and a lot of streets haven't got any lights at all. It's dangerous because I can't see … Basically the walking down at night in wet weather and getting lost, I mean how the bloody hell could I get lost? But I got lost and I went into a panic. I was up there somewhere, near the sports oval, and I couldn't remember where to go and that worries me. (Connie)
Social distance and proximity
The permeability of the socio-spatial boundaries of participants in this study was apparent in three instances in which service workers entered homes while the interviews were in progress. In Connie's case, a person delivering her midday meal knocked and entered without waiting for a reply. During George's interview, a worker who had come to do his washing entered without knocking at all. Prior to James’ interview, and without asking his permission, a worker from a different service checked the contents of his fridge while they talked, removing some of its contents and smelling them for freshness.
Although remarkable from the perspective of the interviewer, none of these ‘normative boundary breaches’ appeared to bother these participants. What did concern several respondents, however, was their capacity to control the physical and social distance between themselves and visitors or neighbours. Despite enjoying human company, James, Wayne and Eve indicated that they sometimes felt a sense of spatial constriction when people visited their homes.
I sometimes get a bit crushed in sometimes with people … It's sort of an intermittent thing that sort of comes and goes. Sometimes I feel as though I'm hemmed-in in a situation, so I don't particularly like it, but some things have got to be done and I can do that. But I like a bit of quiet. (James)
Interviewer: Would you rather see people in the home or when you're out?
Wayne: When I'm out.
Interviewer: When you're at home you feel most comfortable being on your own?
Wayne: Yeah. There's nobody crowding me. If I want to sit here and watch TV, I don't want anybody sitting beside me, because this is my space.
They [friends and family] come barging in any old time! (laughs). I'm sort of used to it by now. I curse them sometimes without saying anything. I might have wanted to be on my own for just a little while or I'll write some letter or something. (Eve)
Participants generally maintained a wider social distance from neighbours than from family, friends or service staff. An exception was George, who enjoyed receiving surprise visits from neighbours, who often ‘popped in’ to check that all was well. Olive would have preferred more contact with her neighbours, but after 16 years of residence, she had still not become acquainted with anyone in her street. James enjoyed cordial but superficial interactions with the people who lived in nearby residential units.
We don't stay away from each other, but we sort of say hello. I've got one or two people that I see more than others. It works quite well. (James)
Relations with neighbours were more problematic for Eric and Connie. Just prior to his interview, Eric explained that he was waiting for blinds to be installed in his house to provide greater privacy, especially from teenagers who sometimes came on to his lawn. Connie was acutely sensitive to what, to her mind, was the well-intentioned but unwelcome surveillance of one particular neighbour. She was resigned, however, to the inevitable progression to closer proximity with others that would occur when she relocated to a residential care facility.
Interviewer: What are the people like, your neighbours? Are people nice in this area?
Connie: Well the one over the road can see and she feels she owns me. She gets her husband to watch who goes in and out of this place. She thinks that she's helping I think. I don't want her to do it, so now I keep the blinds down. As far as I'm concerned, these four walls are mine. Occasionally I go down to the neighbours, or ring them up and ask and they take me down, because it is getting very dangerous. I haven't told them that I've got lost a couple of times at night or they'd be watching what I'm doing. I've been thinking that I'm a danger to myself, living alone now. I would love to keep on living alone. I've always been a loner. I resent being close to [people], but my life can't be as muddled as it is now.
Changing meanings of space and objects
Our participants’ responses highlighted the sometimes ponderous fixity of objects within their current dwellings. Eric and Connie described bills and other documents that remained on their shelves, despite their best efforts to process them. As a result of her cognitive impairment, cherished objects that Olive had acquired over many years had assumed an ambiguous status in her mind, as both repositories of happy memories and stressful ‘clutter’. In principle, she was open to the idea of moving to more manageable private accommodation, but the effort of sorting and packing up her many possessions was too daunting for her to contemplate seriously.
Interviewer: Can you tell me about the rooms in this house?
Olive: They're full of clutter and dust. I should be getting rid of the dust. I was very house proud, but I can't do it any more.
Interviewer: Is it important for you to stay here, living here in this house for as long as possible?
Olive: Well, if the situation arose that something more convenient, I might move. But no, to shift all this to try and clear that table, the clutter that I have with correspondence and things, I couldn't do it again. I couldn't pack it. I couldn't find it. I can't find anything now. You don't realise that you're going to get old and you have to pack up. You acquire these things which were precious at the time. I don't mean gathering wealth or anything. Things have memories and I'm a bit sentimental. So-and-so gave me that. I can't part with it.
The dwellings of most participants contained bedrooms that were under-utilised, or not utilised at all, because they served no current purpose or had become too difficult to maintain. George had a spare bedroom, in which he accommodated visiting relatives. James’ house had more than one bedroom, but he reported using only one, just for sleeping. Most of his time was spent in his living room. This was his favourite place in the house, because of the light that streamed in through the windows and the tree canopy that was visible outside. Eve's house had four bedrooms, but she rarely had overnight guests who could make use of them. Like James, she preferred to spend time in her living room, remarking that ‘you can do anything you like in this room’. Eric had redefined three of his four bedrooms as storage rooms for valued possessions and did not want to contemplate being without them, but Wayne used none of the three bedrooms in his house. Instead, he used the living room as an all-purpose living area, and this, together with the kitchen, was the most utilised space within his house.
Wayne: I only use this room and the kitchen. I sleep in here. I watch TV.
Interviewer: What happens with the other rooms in the house?
Wayne: Well nothing.
Interviewer: Do you use them for storage or anything important?
Wayne: No, not really.
Imaginative co-presence
Despite the social isolation of some of our participants, none reported keeping the television on ‘just for company’. Rather, they were selective and discerning in their viewing habits, seeking out those that accorded with their own personal interests. James, for example, favoured sports programmes. For Eric, who had travelled widely and who retained a cosmopolitan orientation, the television news provided a means for keeping in touch with global developments, but he had begun to find the remote control device difficult to operate. Wayne's favourite programme was about cars, while Olive found delight in the skills of a team of culinary experts as they created elaborate, fantasy-themed cakes decorated entirely in chocolate.
It's the most amazing thing you ever saw in all your life! I've never seen anything like it. It sends shivers up your spine, it's so beautiful. I couldn't describe it, I don't know the words. The work that's gone into it – absolutely beautiful! (Olive)
An alternative manifestation of imaginative co-presence was the ‘calling to mind’ by James and George of people and places, there to be stored as a repository of images for later contemplation or artistic expression.
I always look at people and photograph them in my mind, as it were. It's interesting looking at one person and another person and how they differ and what are their likes and dislikes. (James)
If I sit and just do sketching, I'll allocate myself an hour. Three hours later, I stop. I become totally absorbed in what I'm doing. When I do one of my artworks, the picture is complete and finished, completely back here somewhere [indicates his head]. All I'm doing is transposing what is there on to paper or canvas. I have an unusual thing that I can look at it for 50 seconds, and then take it away. I can draw exactly what I saw, in three days’ time. The picture is now in there [again indicates head]. It starts to fade after three days. (George)
Although interacting with toys is culturally coded as a children's activity, items such as dolls and toy animals can provide comfort for adults in the later stages of dementia (Andrew Reference Andrew2006). In other adults, however, such usages are not necessarily problematic, and are in fact quite common (Brody, Costa and Hess Reference Brody, Costa and Hess2012). Eve's cheerful references in the course of her interview to the soft toys that decorated her living room were suggestive of ‘boundary play’, defined by Nippert-Eng (Reference Nippert-Eng2005: 302) as ‘the visible, imaginative manipulation of shared cultural-cognitive categories for the purposes of amusement’. In boundary play, an entity is treated or discussed as though it belonged to another, usually oppositional category. A prerequisite for this kind of play is a flexible mental disposition that can take pleasure in the manipulation of conceptual dichotomies (Nippert-Eng Reference Nippert-Eng2005).
Interviewer: You're obviously a person who likes bears! (interviewer and participant both laugh). You've got this lovely big fellow there and you've got a little gollywog there too.
Eve: Yes, he's pretty old, the gollywog. People give them to you at different times and sometimes I buy them. I bought this little fellow [a bear] and I gave him his little red ribbons (laughs) … I'm on my own 24 hours a day so I like to have someone to talk to who can't answer me back! (laughs) He can say yes or no, but not carry on with a great heap of stuff. Oh dear! I talk to the four walls. They don't answer me back!
Although the family home is often a site of deep meaning and reassurance for people with dementia (Chaudhury 2008; Rubinstein, Kilbride and Nagy Reference Rubinstein, Kilbride and Nagy1992), George was the only participant in our study to explicitly foreground the house in which he lived as the centre of his current life-space. As Eve had done, George demonstrated a playful disposition by joking during his interview, but he grew more serious when describing moments of co-presence he had experienced, and continued to experience, with people who were no longer alive. George's observations can be understood as expression of the ‘aesthetics of absence’, whereby the lost embodiment of a deceased person is evoked by a particular setting or material object in a way that consoles, reassures or is otherwise satisfying to the perceiver (Ash Reference Ash and Kirkham1996). He recounted an incident that had taken place some time ago, when, thinking himself alone in bushland, he had become aware of a soldier standing beside him, dressed in a uniform from the early nineteenth century. George had felt totally unthreatened by the apparition and recounted the story with equanimity. On a more personal and sustained basis, his family home now gave material form to the imaginative co-presence of his dearly loved late wife, and he described the house as a source of continuous comfort and mental stimulation.
George: I'm aware of people. Pam's been listening to our conversation now. You're sitting exactly where Pam used to sit. That's exactly how she used to sit; in fact, you could easily be my wife. We were incredibly close, my wife and I. You see this panel here? Pam painted that. You see that wall there? Pam painted that wall and most of this ceiling. It's full of memories and they're nice, happy memories. Mind you, recently they were very sad memories, but I've got better and now I look and say, ‘yeah, you did that’ … Some silly bugger put me into a respite care, I think they called it. God, I was there a fortnight and [it was] the most boring time you could possibly imagine! I grew impatient and I couldn't wait to get home.
Interviewer: Is there anything that you would like to change about this house?
George: Well see, if I was to change it, it would no longer be my wife. It's got to be kept as my wife knew it. That deck outside. My wife used to spend hours upon hours playing chess out there. If I was to move or this house be altered, it would destroy her image in me, or her. She'd be no longer Pam.
Discussion
Dahlberg, Todres and Galvin (Reference Dahlberg, Todres and Galvin2009) note that ‘life world-led’ perspectives on care can inform deeper understandings of the ambiguities of health-care consumers’ lives. Our findings and analysis indicate that a ‘life-space-led’ approach can also be of utility for understanding the complex mobility practices of people with dementia as they negotiate private and public space, and how these insights might inform the specificities of dementia care within the community setting. There are, however, clear limitations to the wider applicability of the study. This was an exploratory project, involving a single interview with a small number of participants. More detailed information salient to improved dementia care for these participants and for the wider community might therefore have been missed. Our findings are thus suggestive, rather than indicative, of interventions that could support wider populations of people with dementia living alone, including those from lower socio-economic and/or culturally and linguistically diverse backgrounds and people with late-stage dementia.
Despite these limitations, we are confident that this paper offers useful insights into a soon-to-be-common scenario in which increased numbers of people with dementia will be living without a resident carer. The first is that the perspectives and preferences of people with dementia are no more homogenous than those of any other group categorised according to illness or disability. As Cicero (Reference Cicero and Carswell2012, p. 18) observes, ‘[t]he future of aging in place depends on the thoughtful provision of community-based long-term care in the local setting’. Policies and practices aimed at improving quality of life within the home are typically formulated in a top-down direction. The data support our contention that high-level decision making needs to be informed by the observations of appropriately trained and supported front line workers who have frequent, direct and personalised interactions with individual clients. Respondents’ requirements for privacy within the home, for example, were shown to vary according to the temperament of the perceiver and the role of those seeking to enter his or her domestic space. Such nuances are less likely to come to the attention of service professionals who are socially and geographically distanced from clients.
The responses of our participants also demonstrate that ageing in place need not equate with remaining in the precise dwelling occupied before the onset of dementia. In cases where the private residence is a site of deep meaning and imaginative mobility, every effort should be made to support dementia clients to remain in that specific dwelling. However, not all houses serve this function for people with dementia living alone, and large unutilised spaces and accumulated material possessions can become unmanageable and even threatening. Early detection by home care workers of changing meanings of objects and space, in the course of conversations and interactions with clients, could help to initiate and support relocation to more functional and appealing housing before the prospect of moving becomes overwhelming.
Our data also call attention to needs common to the human condition, primarily the need for access to outdoor space. Public and private spaces were seen to serve complementary functions in supporting the spatial satisfaction of participants (see Brorsson et al. Reference Brorsson, Öhman, Lundberg and Nygård2011; Kumar and Makarova Reference Kumar and Makarova2008). Conversely, involuntary confinement to the private home gave rise to spatial distress. An enduring will to mobility in people with dementia, combined with the demonstrated attractiveness of natural and built environments beyond the home, means that their everyday life-spaces will continue to transcend artificial boundaries. Those who live alone and retain the physical capacity for movement will inevitably make unsupervised excursions into public space, despite the disorientation they are likely to experience as the condition progresses. This will render them more visible to, and require the co-operation and assistance of, the general population, many of whom know little or nothing about dementia. There is a consequent need for comprehensive education programmes that promote accurate and empathic public understanding of dementia at all stages of the condition, to moderate public anxiety and promote positive engagement with people with dementia (Kessler et al. Reference Kessler, Bowen, Baer, Froelich and Wahl2012).
Decision makers in organisations that plan and maintain public space also require relevant and accessible information regarding the mobility practices and needs of people with dementia who live alone, as well as for wider populations. There are now large numbers of diversely mobile bodies ‘on the move’ (Sheller and Urry Reference Sheller and Urry2006) and, as Blackman et al. (Reference Blackman, Mitchell, Burton, Jenks, Parsons, Raman and Williams2003) remind us, many people who do not have a diagnosis of dementia will experience forgetfulness and confusion across a range of environments. Scholarly theoretical interpretations of spatial aspects of the dementia experience must not be too abstract to provide guidance to practitioners such as designers, planners and policy makers, who are more empowered than others to interpret space as a realm of attractive and targeted possibilities, as well as of risk (Lapintie Reference Lapintie2007; Schiefelbusch Reference Schiefelbusch2010). The mid-range theoretical approach that we have adopted in this exploratory study accords with this imperative of applicability, and points to a need for more extensive research into the life-space experiences of people with dementia living in single-person households.
Acknowledgements
This research was funded by the Home & Community Care (HACC) Program Tasmania. It was conducted in partnership and collaboration with Advocacy Tasmania Inc.
