The Social Significance of Sleep for Older People with Dementia in the Context of Care

by Wendy Martin and Helen Bartlett
University of Reading; University of Queensland

Sociological Research Online 12(5)11
<http://www.socresonline.org.uk/12/5/11.html>
doi:10.5153/sro.1622

Received: 10 Jan 2007     Accepted: 24 Aug 2007    Published: 30 Sep 2007

Abstract

While the social aspects of dementia have been increasingly researched over the past decade, there has been little focus on sleep and its significance to older people with dementia within the context of care. This paper attempts to address this knowledge gap by exploring the experiences of sleep among older people with dementia and the perceptions of family carers and care staff in different care settings. The paper is drawn from a larger research project that explored the empowerment of older people with dementia, and involved 18 in-depth interviews with older people with dementia and 8 focus groups with health and social care staff and family carers.

The discourses of the older people with dementia and family carers, emphasised vulnerabilities associated with sleep, thematically represented as: (1) interconnections between health, care, the body and sleep; (2) memory loss and perceptions of sleep, time and place; and (3) a sense of vulnerability around night-time, sleep and safety. The sleep discourses of the older people with dementia and their family carers focused on meanings associated with experiential dimensions of sleep and were closely connected to their social identities and roles. The key concern for the health and social care staff was the organisation of sleep, including: (1) temporal management of sleep and sleep practices, and (2) management of sleep across public/private space: safety, surveillance and privacy. The sleep discourses of the health and social care staff predominately focused on sleep practices and environmental dimensions of sleep. These different perspectives denote varying positions and concerns in relation to sleep between waking conscious actors and dormant bodies, thereby highlighting the social significance of power relations and vulnerabilities within the context of care for older people with dementia.

Keywords: Sleep, Care, Dementia, Memory, Risk, Vulnerability, Privacy, Time, Space, Surveillance

Introduction

1.1 Despite the centrality of sleep to our everyday lives the social significance of sleep in the context of care has received limited attention. The domain of sleep has instead been predominately handed over to the province of science, psychology, philosophy and sleep medicine (Williams, 2002, 2005). In recent years the neglect of sleep as a sociological issue has become increasingly obvious. There has for example been increasing recognition of the spatio-temporal dimensions of sleep (Williams, 2002, 2005; cf. Twigg, 2006); the lived experiences of sleep (Leder, 1990; Williams, 2002, 2005); and sleep practices in everyday life (Hislop and Arber, 2003a, 2003b; Williams, 2002, 2007a). This paper [1] aims to highlight these dimensions of sleep through an exploration of the experiences and meanings of sleep for older people with dementia, their family carers, and health and social care staff, in the context of care.

1.2 Dementia is an illness that affects a person’s cognitive ability and leads to difficulties associated with memory and communication and it is well documented that older people with dementia experience disempowerment (Goldsmith, 1996; Kitwood, 1997; Parker and Penhale, 1998). It is the interrelationship between old age and dementia that appears to render older people with dementia so powerless. Not only is old age viewed as a challenging, unwelcome and negative stage of life (Oliver, 1999) but dementia is conceptualised as a personal tragedy in which the person loses not only their memory but their sense of self and subjectivity (Oliver, 1999; Gilleard and Higgs, 2000). Whilst these perceptions are increasingly being challenged, with a more inclusive narrative of the lived experience of dementia now being constructed (Kitwood, 1997; Downs, 1997; Bond and Corner, 2001; Wilkinson, 2001; Martin and Bartlett, 2003), research, policy and practice continues to predominately focus on the waking rather than the sleeping lives of older people with dementia. This is despite increasing recognition that insomnia, erratic sleep patterns and sleep difficulties can have a significant impact on the health and well-being of people with dementia and thereby their quality of life (see for example, Fetveit and Bjorvatn, 2002; Tractenberg et al., 2003; McCurry et al., 2004; Kuhn et al. 2005).

1.3 Interconnections between dementia and sleep also offer important insights into our personal vulnerabilities, and their presentation, as people grow older. Daily routines and norms can be frequently and unpredictability disrupted due to greater exposure to physical and social risks as we age (Turner, 2004). Transitions from good health to poor health, from independence to dependence, from being active to sedentary, from spouse to widow(er), and from (private) domestic to (public) care settings, will all have the effect of dislocating sleep patterns and identities (Williams, 2005). Dementia, in particular, questions our sense of “ontological security” (Giddens, 1991, 1992) associated with the development and maintenance of daily routines: the ‘embodied irrationality of dementia challenges the notion of a disembodied rationality … A body the mind has lost control of becomes instead the de-civilised body’ (Gilleard and Higgs, 2000, p. 168, emphasis in original). Loss of waking consciousness moreover renders us vulnerable to the waking actors who may do harm to our (absent) self and vulnerable to ourselves due to our loss of bodily control while sleeping (Williams, 2007b). These vulnerabilities may be especially pertinent to people with dementia whose sleep is frequently described as disrupted and disruptive, characterised by night–time wakefulness and daytime sleeping (Kuhn et al., 2005).

1.4 Changes in roles and responsibilities in the context of care will also directly influence the lived experiences and meanings of sleep (Williams, 2002, 2005; Hislop and Arber, 2003a, 2003b). The rhythm, activities and routines of domestic and institutional life, such as, meals, bathing and sleep, are structured around the care of the body. Sleep is therefore embodied and embedded within the structure of our everyday lives, a key symbol in the temporal ordering of daily life (Williams, 2005; Twigg, 2006), with sleep / wake patterns further routinised into the organisation of care. Older people with dementia however frequently disrupt the institutional logic of care by awaking and getting up frequently at night and remaining in bed during the day. As space and time for sleeping are not morally neutral, and normative evaluations about the place and timeliness of sleep are evident (Gubrium, 1975; Williams, 2005), it is possible that the sleep of older people with dementia may become more and more regulated if their disruptive sleep patterns become defined in relation to policies of risk, safety and dependence (cf. Katz, 1996, 2000).

1.5 As Twigg argues ‘For Foucault, power and knowledge are intertwined. Expert bodies of knowledge constitute, order and control fields by means of their discourses and related practices, so that the act of definition and classification is itself an act of power’ (2006, p. 4) [2]. Whilst the body is the site and tapestry of these disciplinary discourses, paradoxically the body has predominately been written out of the field of social care. Moreover, the role of social care has largely been overlooked by Sociology as the micro-processes of daily bodily care are considered too mundane a topic for analysis and interpretation (Twigg, 2004, 2006). This paper aims to redress this balance through an exploration of the nuances and complexities of the interrelationships between dormant and waking bodies and vulnerabilities associated with sleep in the context of care. As sleep and sleeping are located within wider discourses and concerns within the spatio-temporal ordering of care (cf. Twigg, 2004, 2006), this paper aims to illuminate the processes through which power relations and vulnerabilities associated with sleep are reconstituted in care relationships. In particular, the tensions and interconnections between the experiences of sleep of older people with dementia and the (bureaucratic) control associated with the organisation of care in which they occur are highlighted.

The Study

2.1 The paper draws on data from a larger study, which aimed to explore how decisions are made for older people with dementia by focusing on the issues from the perspectives of older people with dementia and their carers. The study was concerned with identifying the opportunities that exist for older people with dementia to be involved in how they live, the barriers to realising these opportunities, and practices that could overcome these barriers. A key aim was to explore how the rights and choices of people with dementia can be balanced with possible concerns that people have for their safety and well being. Ethics approval was granted by the local NHS Trust and University research ethics committees (see Bartlett and Martin, 2001).

2.2 The first stage of the research involved eight focus groups conducted with health and social care staff, older people and family carers. The aim of the focus groups was to chart the key areas of decision-making viewed as important for older people with dementia in order to frame the interview topics and schedule for stage 2. The groups were pre-existing and included:

2.3 The focus groups were selected to represent a range of settings, staff and care situations. The size of the groups varied between 5 and 9 members and they lasted between one and one and a half hour. The focus group interviews used the technique of prompt cards that covered identified areas of decision-making within everyday life (Brown and Benson, 1997) to facilitate discussion and allow comparison between the groups. A facilitator and note-taker were present at all the groups. The focus groups were tape-recorded with permission and fully transcribed. The data were coded and analysed thematically using Atlas Ti.

2.4 The aim of stage two of the research project was to explore the key decision-making areas for older people with dementia living in different care settings. Data collection involved 18 semi-structured interviews with people aged 65 years and over, with a known diagnosis of dementia. Due to difficulties in accessing people with dementia directly, in particular, confirming a diagnosis of dementia [3], a number of different access routes were required. The participants were selected from a range of residential, daycare and sheltered housing settings, reflecting diversity in size, type of ownership, resident mix, and levels of dependency. The different care settings of the participants included: 1 resident in a nursing home, 7 residents in non-specialist residential care, 3 residents in specialist (for dementia) residential care, 4 tenants in sheltered housing schemes, 2 people living in their own homes who attended community daycare, and 1 participant was interviewed in hospital as she moved from her own home into a nursing home. The socio-demographic characteristics of the sample were as follows: age range 67-91 years; 3 males and 15 females; 5 were married, 1 single and the remainder were widowed. The participants had been in their current setting for between 4 weeks and 3 years.

2.5 A process of informed consent was negotiated with all respondents who agreed to participate (see Bartlett and Martin, 2001). Proxy assent was also gained from a family member and/or significant other. The interviews lasted between 20 minutes and one hour. There were many complexities to negotiate when interviewing older people with dementia, for example, assessing competency, ensuring on-going consent, and promoting the active participation of the person. The interviews were conducted in a sensitive and supportive way and potential signs for distress were monitored. This is especially important as older people with dementia can have difficulty expressing themselves, so that it was important to ensure all participants had the opportunity to voice their own concerns, ideas and meanings. With permission, 16 of the interviews were tape-recorded and transcribed. Notes were taken at the other 2 interviews at the request of the participant. The interviews were coded and analysed thematically using Atlas Ti. All names of the participants were changed to protect their identity.

2.6 The focus of the original study was not sleep, therefore a secondary level of analysis was undertaken in order to code and analyse the data for references about sleep that were elicited in the context of the participant’s everyday lives. From the original sample of 18 older people with dementia, 10 participants made reference to sleep and sleep practices in their interviews. Within the focus group interviews the health and social care staff, and family carers, discussed sleep and sleep practices in relation to the following prompt cards: ‘Getting up late most days’, ‘Having the last meal of the day at 5 p.m.’, and ‘Being able to lock your bedroom or flat door’. From this analysis insights into the social significance of sleep and sleeping in the context of care were highlighted. This paper does not, however, claim to portray a complete picture of the sleep of older people with dementia, but it does nevertheless open up new possibilities for understanding more about the social worlds of older people with dementia. In particular, this paper is written with awareness that the sample size is small and the original focus of the project was not sleep. In this context, the data presented in this paper aims to illustrate complexities and interrelationships in the context of care as a springboard for further research and does not intend for broad generalisations to be made. However, this paper does claim to achieve a more comprehensive narrative of the lived experience of dementia that includes their sleeping as well as their waking hours.

Vulnerabilities and Sleep

3.1 References to the experience of sleep were evident in the discourses of the older people with dementia and family carers, particularly when sleep was disrupted, and/or required significant management due to memory loss, emotions and pain. Three key themes emerged from the data: (1) interconnections between health, care, the body and sleep; (2) memory loss and perceptions of sleep, time and place; and (3) a sense of vulnerability around (night) time, sleep and safety. The sleep discourses of the older people with dementia and their family carers primarily focused on the experiential nature of sleep.

Interconnections between Health, Care, the Body and Sleep

3.2 Sleep and sleep practices were frequently linked to a sense of health and well-being by both the family carers and the people with dementia. Family carers frequently monitored the amount, timeliness and quality of the sleep of the person they cared for. Sleep was associated with key benefits to health and well-being:

Well I mean if she gets a bit too tired and sort of sitting down then I will put her to bed for a couple of hours and then when she comes back she’s more refreshed like.
(Sid, husband and carer of Angela, aged 68 years, live in own home, interviewed as couple)

3.3 Sleep was seen to ameliorate symptoms such as restlessness, persistent worrying and bodily symptoms, for example, tiredness, nausea and vomiting and feeling generally unwell. Promoting sleep was part of a caring and nurturing act to enhance the comfort and well-being of the person with dementia.

3.4 Family carers often focused their concerns on the sleep of the person with dementia, which was sometimes detrimental to their own sleep. Family carers would frequently lie awake and / or experience intermittent sleep as they continually watched, sensed and monitored the person they cared for:

I made a decision to actually have single beds, in the same room, but it means less disturbance (from wife with dementia). I found I was losing a lot of sleep. It all comes down to responsibility and every time there is a movement or something, you think, “Oh does she need to get out or …”. Whereas a lot of the time it might be normal movement in her sleep, and if you are not in that bed, you aren’t even aware of it.
(Phil, Focus group, family carers)

3.5 The caring role intruded into the organisation and experiences of sleep within coupled lives. For family members of older people with dementia their sense of responsibility as a carer was central to their experiences and perceptions of sleep. In particular, a sense of unpredictability associated with dementia engendered a ‘state of alertness’ around sleep and night-time (cf. Bianchera and Arber’s article in this volume).

3.6 There was also an interconnection between health and sleep within the discourses of the older people with dementia. This was especially evident when the participants spoke of persistent tiredness:

I: How is your health?
Joyce: Oh it is quite good. I am very tired, I am 85, and I get terribly tired, I just can’t be bothered …….I am at this sort of compost stage. And I am very tired.
I: Does sleeping help when you get tired?
Joyce: Oh yes, in the morning I am all right.
(Joyce, aged 85 years, private specialist residential home)

3.7 Tiredness was linked to being ‘old’. Persistent feelings about tiredness were difficult to describe but were frequently referred to by most participants, in particular, as a systemic and bodily sensation. For some participants sleep improved these feelings, for others it did not. A range of physical factors appeared to cause difficulties with sleeping, which according to participants included physical pain, restlessness and a dry mouth. The prominence of feelings of continual tiredness throughout the interviews brings the significance of the quality of sleep for older people with dementia into sharp relief.

3.8 Participants’ disrupted biographies further influenced the amount and quality of their sleep. Many of the participants had experienced a number of significant changes and losses within their recent life. This included moving accommodation, the death of close relatives, and the loss of bodily functions and cognitive capacity that limited their daily activities and choices. For some, disruptions to their everyday lives, low emotions and / or physical pain influenced their quality and experience of sleep. This is clearly illustrated with the example of Maggie who experienced constant back pain that severely limited her mobility; as sitting was too painful, she was only able to either lie flat or walk and stand. Throughout her interview she continually said she felt ‘low all the time’ since her move into the residential home. Maggie was anxious about the nights that she experienced as long and lonely if she was unable to sleep. The combination of these factors led to an elaborate set of practices to promote her sleep at night:

Maggie: I wake very early. I take two tablets, and I force myself to stay awake until 11 o’clock at night, which I do. And then I take temazepam.
I: What do you do to stay awake?
Maggie: Well the last meal here is tea, it is only high tea at 5 o’clock … And anyway I read after tea and try to stop myself (falling asleep). And I try not to take more than I actually need until 8 o’clock. At 8 o’clock I put a notice on my tray saying drinks trolley ring the bell, because they come around with drinks, they usually get here about 8.20 and one of the things is that I can’t drink very hot drinks, I have to have my tea tepid and very sweet, and so they bring it, and I have that, and I then try and keep going until 9. At nine, I take one sweet and work on it until it is exhausted, and then I count very slowly four times until 100, and then luckily that takes quarter of an hour, and then I do that four times, that takes me until ten o’clock, and then I read again until 11 o’clock, and then I take my temazepam. So it is a schedule.
(Maggie, aged 78 years, residential home)

3.9 Maggie had a detailed and specific ritual of sleep and sleep practices [4]. Her sleep practices are interconnected with the rhythm and routines of institutional life to enable her to find a way to reduce her emotional and physical pain and make the night-time more bearable: sleep during the night was her objective. Some other participants chose to sleep in their chair or on the sofa for reasons of comfort, well-being and / or bodily limitations. As the bed is the usual site for sleep, others would at times voice concern about this practice:

Well you see if I could just sleep on the sofa .. I can put my legs up and take my shoes off .. And when my daughter comes in she says, “I know you haven’t slept in that bed”
(Sylvie, aged 80 years, sheltered housing)

3.10 Sleep takes place in a social and cultural context that influences the choices and experiences of older people with dementia about where and when they can sleep. For many of the participants, a combination of physical and emotional pain, bodily limitations and cognitive capacity intruded on their previously taken-for-granted sleep practices.

Memory loss and perceptions of sleep, time and place

3.11 The participants’ memory loss, which predominately focused on the here and now, added to the complexity of their perceptions of sleep and related emotions. Sleep is described as a liminal state, a reversible state that exists somewhere between consciousness and unconsciousness, the voluntary and involuntary, the social and the biological (Williams and Bendelow, 1998; Williams, 2005, 2007b), so that interconnections between sleeping and waking worlds are complex. We do however assume that when we wake up, or soon after, we will once again be orientated in time and place. This is not always the case for people with dementia, and the link between memory loss and the perceived experience of sleep was clearly evident within the discourses of the participants.

3.12 June’s husband had died one year previously and since his death she had moved into a residential home. June had difficulty remembering whether or not her husband had died and she moved between different levels of awareness about his death. The following extract is from an interview with June, at which her careworker was present:

June: It was late this morning. It wasn’t my fault because nobody never came to fetch me and I have been about all night, I have had a terribly restless night. So I was told not to go down on my own because I might have fell down and so she (the care worker) was ages fetching me this morning, that is why I was later coming in to breakfast.
I: Do you sometimes worry about falling down?
June: Not as a rule. But I had a restless night worrying about my very sick husband lying there. Is he still there now?
Carer: No, not now.
June: Has he died?
Carer: Last year.
June: No, not last year, it was these last few weeks.
 (June, aged 80 years, residential home)

3.13 June’s difficult experiences with her sleep and night-time emerged in the context of talking about her everyday routines and activities. The sense of uncertainty that June experienced about time and place, her continuing concerns for the well-being of her husband, directly affected her experiences and meanings of sleep. In particular, her perceptions of her own risk of falling were heightened as she had been restless throughout the night. Bianchera and Arber (this issue) point to the legacy of care on women’s sleep. This includes feeling troubled by distressing images of caring, especially during terminal illnesses. These long-term effects and images of caring may further be prolonged for older people with dementia who experience significant difficulties with their memories.

3.14 Another participant described how his memory loss, and in particular how his difficulties with orientation to time and place, impacted on his sleep. Harry had previously been a car factory worker and had maintained a regular routine throughout his working life. However he frequently awoke during the night concerned that it was time to go to work:

Harry: I used to get up at six and get home at six or thereabouts.
I: And what is your routine like now?
Harry: I am supposed to have retired a long time ago, but I need to keep going back to work, I can’t leave it somehow. I should leave. But I get up in the morning and go to work.
I: So when you get up, you still feel you need to?
Harry: You don’t know whether you are supposed to do it or not.
I: And what happens when you realise you are retired?
Harry: Well it all comes back again.
I: And that happens every morning does it?
Harry: Oh no, not every morning, no. But I get up lots of times, when I have no need to do it.
(Harry, aged 84 years, nursing home)

3.15 Harry continually experienced disruptions to his sleep due to his loss of memory and found himself frequently getting up throughout the night:

Harry: Sleep walking that is it. Yes I can get a long way down.
I: So you get up at night do you?
Harry: Well, I do now and then. I was out three hours one day and got wet through.
I: Did that happen when you were living at home?
Harry: Yes. I think it did, for about three hours or so, I have been downstairs though here, you don’t know you have done it.
I: You don’t?
Harry: No.
I: When do you realise?
Harry: Well, you don’t until the morning and your son-in-law tells you were wandering last night.
(Harry, aged 84 years, nursing home)

3.16 The disruption to Harry’s sleep manifested itself in an experience of ‘sleep walking’. It is notable that Harry defined his own problem as a difficulty with sleep. Others around him appeared to focus on his activity and described his actions as ‘wandering’ throughout the night.

3.17 The liminality of sleep therefore often appears to be problematic for older people with dementia who have difficulties with their memory and orientation to the present. The transition between sleeping and waking, in particular waking up, appears to be a significant moment for some people with dementia as they struggle to locate themselves within their current place and time. During this transition the discourses of the participants relate to their social identities and biographies. In particular, the participant’s perceptions are gendered: the men predominately talk about paid work and the women about their domestic and caring roles.

Sense of vulnerability around night-time, sleep and safety

3.18 There was a heightened sense of vulnerability associated with night-time and sleep that was frequently constructed as concerns about safety. Memory loss appears to intensify this sense of vulnerability for both the person with dementia and their carers. Frequent awakenings during the night were often viewed as problematic and the associated safety concerns may be a key reason for moving into residential care or sheltered accommodation. This was the case for Christine who was interviewed in the hospital. The following extract is from her interview the day after a review meeting in which it was decided that she would be moving to a nursing home:

I had just been living a normal life. And it is very difficult to judge, they said I didn’t know what I was doing, and – but I felt that was too strong and they wanted me to go – my son – now I must be careful about this – my son doesn’t like being disturbed – and apparently what was happening was that I was waking up in the night, and not knowing where I was, and I had woken up, because I woke up at 3 o’clock, and I was doing the housework and things, which I wasn’t aware I was doing, how much I don’t know, and somebody tried to say I wasn’t safe, perhaps I wasn’t, I don’t know.
(Christine, aged 85 years, interviewed in hospital, transition from own home to nursing home)

3.19 Christine was waking and without awareness of the time was participating in activities, such as housework, that are usually reserved for the daytime. Such experiences of sleep and non-sleep by older people with dementia thereby dislocate the ordered and temporal dimensions of everyday life and inevitability impact on the sleep of others. Moreover, these disruptions heighten both concerns for the safety and the sense of vulnerability of the person with dementia.

3.20 Whilst living in institutional settings may promote a sense of security, especially for family carers, it can lead to an increased sense of vulnerability for the older person with dementia. Sleep is often associated with privacy [5] and predominately occurs alone or with intimate others (Williams, 2005). The nature of collective living can however intrude on this privacy and solitude. Joyce, for example, was very concerned about the noises of people outside her room during the night. Joyce’s narrative moved from a position in which she thought she was living in her own home to one in which she was aware she was living in a residential home. A key concern for Joyce was her heightened sense of vulnerability at night-time:

Joyce: Well I always lock my door at night – my bedroom door, because of outside. It worries me if I hear a person rattling the door to get in, and occasionally you do. I don’t know who it is ..
I: Do the nights worry you?
Joyce: Well they do if things start going wrong. But on the whole I don’t worry. …It’s only in the night, daylight I don’t mind.
 (Joyce, aged 85 years, private/ specialist residential home)

3.21 Night-time can therefore be a time in which older people with dementia have increased worries about their own safety. Their sense of vulnerability around sleep is especially linked to their memory loss.

The Organisation of Sleep

4.1 The key concern for health and social care staff was the organisation of sleep. This included: (1) temporal management of sleep and sleep practices, and (2) the management of sleep across public/private space: safety, surveillance and privacy. In addition, the sleep discourses of health and social care staff focused on sleep practices and the environmental dimensions of sleep. The influence of different care settings was significant to these descriptions.

Temporal management of sleep and sleep practices

4.2 The rituals and practices associated with sleep are seen as important temporal markers (Williams, 2002) and the health and social care staff recognised their role in relation to the management of sleep and sleep practices. The first key area that participants discussed were sleep practices associated with ‘getting up’ and ‘preparing for bed’. The practice of ‘getting up’ in the morning was especially cited as a significant period of the day that enhanced the quality of life for the person with dementia:

A: I mean like getting up in the morning is quality time for the person who is getting up.
C: Well, it is getting them set up for the day isn’t it. Putting their make up on, their hair, and making sure they are wearing something they want to wear.
(Focus group, care staff, non-specialist residential home)

4.3 Activities associated with sleep give rhythm and structure to the day and promote a sense of comfort and security (cf. Twigg, 2006). It is evident from the discourses of health and social care staff that these bodily practices are an important dimension of their care work. At the same time, the habitual activities of daily living can create tension with the logic and routines of institutional life. So whilst the care staff cited the significance of sleep rituals such as ‘getting up’ they were also concerned that one hour, between the beginning of their day shift and the finishing of breakfast time, limited that quality time for both the carer and the person with dementia. Getting up sometimes felt rushed due to institutional pressures of time and routine.

4.4 One key point of discussion for the health and social care staff was the length of time that residents stayed in bed and the time that residents spent in bed was closely monitored by the staff. The following extract is a discussion about whether to allow sleeping in late in the morning or not:

E: The thing is we get to know them, don’t we? We get to know the ones that like to lie in, and the ones that like to get up early, and the ones that will get up at average times.
B: I mean there are some, like Penny, when she first come in (i.e. moved into residential home), she never used to get up, she is depressed, so obviously she likes to stay in bed.
 (Focus group, care staff, non-specialist residential home)

4.5 There were different perceptions about staying in bed late into the morning. Within the focus group interviews some staff viewed it as a personal choice that reflected the resident’s character and identity. Other staff associated spending too long in bed with ill-health and a low sense of well-being. In particular, the care staff were concerned that staying in bed denoted signs of depression. It restricted the ability to monitor other aspects of their personal care, such as their diet, and increased the risk of falling as they could not be monitored so easily in their bedrooms. Underlying these concerns of the health and social care staff was the extent to which residents could choose how they spent the day and how to balance that with potential risks to their health and well-being.

4.6 The timing of sleep was especially seen as significant in relation to promoting the orientation of the residents to the temporal ordering of daily life. Some of the health and social care staff described the notion of the ‘body clock’ in relation to sleep:

A: I don’t think some of our ladies realise it is morning or night anyway, their body clock is ..
B: I mean there are some that are only too ready to get up, that is fine, but if they are awake obviously, I don’t think it is fair to wake them and get them up.
C: I mean that is great, but where I have worked before you get nurses and that going on about the body clock and how their body is being upset by this, you know, the morning-night routine, they try to get them back into that. You know you sleep at night not in the day ..
 (Focus group, care staff, private specialist nursing home)

4.7 The periods of wakefulness and sleeping were therefore closely observed. The care staff in particular described the significance of sleep and sleep practices to promote orientation through the maintenance of a regular sleep-wake routine for the residents. At the same time, there could be disparities between the needs of people who are dependent on others for their bodily activities and the organisational regime of health and social care staff. This was highlighted during the focus group of wardens from sheltered housing who described their concerns about the time their tenants were being put to bed by the community care staff:

They start at 5.30 putting them to bed. One lady I’ve got doesn’t mind, she likes to go to bed early. But then what’s happened lately is she’s losing her memory a little and she gets up about 8pm and rings me to say ‘Nobody came to get me up yet’. And one night I didn’t realise what was happening and I called the night people, and said look no one's come to put this lady to bed. And it turned out they had put her to bed and she thought it was morning.
 (Wardens, Focus Group, sheltered housing)

4.8 Dependency on paid carers can therefore limit the choice and control that older people with dementia have over their sleep timing and practices. So whilst the care staff described the importance of regularity surrounding sleep, this was not always possible in practice due to the tensions between the logic of institutional routines and (individual) bodies (cf. Twigg, 2006). Dormant bodies can therefore disrupt the temporal ordering of care.

The Management of Sleep across Public/Private Space: safety, surveillance and privacy

4.9 References about sleep within the discourses of the health and social care staff were replete with concerns about safety, night-time and sleep amongst older people with dementia. In particular, there was a tension between the bedroom as a private space for sleeping and intimate care and a public place of work for the care staff. Tensions between public and private dimensions of the bedroom were heightened during periods of sleep and the night-time.

4.10 In particular, the health and social care staff were concerned about their responsibilities for the safety of residents, while at the same time maintaining residents’ privacy. Night-time and sleep was constructed as a time of increased risk for the person with dementia. The choice of a resident to maintain their privacy and lock their bedroom or individual flat door therefore presented a key dilemma for health and social care staff:

B: It is all written in the care plan. And those ones who do lock their door and do not wish to be checked at nights, then they have to tell whoever is in charge and it is actually written down on their care plan.
D: They sign it as well as a choice. We are covered then. But I mean I always listened outside the doors anyway, just in case. But you know who locks the doors.
B: Because you wake them you see, you go in, and if you (the resident) are a light sleeper, you know they are quite heavy doors, and the light shines in, you disturb them.
(Focus Group, care staff, non-specialist residential home)

4.11 To maintain their privacy whilst sleeping , the residents needed to take responsibility for their own sleep and night-time safety. At the same time, the health and social care staff were concerned about their responsibilities for the night-time safety and well-being of the residents. Routine surveillance of sleep was therefore evident and considered a key duty of residential care staff. This was not without its complexities as the surveillance of sleep can actively disrupt the sleep of residents due to the noise and light.

4.12 As the assumption is that residents will be asleep at night-time, there are fewer staff scheduled to be on duty at night. However, people with dementia may awaken frequently during the night. These disruptions not only affect the experience of sleep for the person with dementia, but present concerns about their safety and well being. For example, the specialist nursing home for dementia had a philosophy that allowed total freedom of movement for their residents [6]. The staff discussed their concerns about this philosophy in relation to night-time, locked doors and staying in bed late into the morning:

Free wandering around our building, which is one of the real basic parts of our philosophy, which we have stuck to since we opened, was that if people wanted to get and stay late in bed, and wander round, we would allow .. But that came along with risks, sometimes the risks are really difficult.
(Focus Group, Head of Nursing Home, specialist nursing home)

4.13 Enhancing privacy and freedom of movement needed to be balanced with the perceived risks to the person. This included the person becoming unwell during the night, falling and/or experiencing significant worries and distress. Whilst these concerns were discussed during the care planning of the resident, and involved their family, there were still differing views about the qualified nurses’ responsibilities in relation to risks:

Head of Nursing Home: Being human is taking risks, isn’t it? So to deprive somebody taking a risk is treating them less than human.
Senior Nurse: Except the balance of the duty of care, isn’t there?
(Focus Group, specialist nursing home)

4.14 The health and social care staff therefore needed to balance their own sense of duty of care with the rights of privacy and freedom of the person with dementia. Sleep and night-time were constructed as key periods of increased risk for the person with dementia, requiring management and surveillance of sleep across public and private space. Tensions between the privacy of the residents and concerns for their safety therefore needed to be managed.

Insights into sleep and sleeping

5.1 Interspersed within the data about decision-making and about everyday life were references about sleep and sleeping within the social worlds of older people with dementia. The older people with dementia, and the family carers, predominately focused on vulnerabilities associated with sleep, in particular the experiential/embodied dimensions of sleep. This included perceptions of their health, memory loss, physical and emotional pain, bodily limitations, and a heightened sense of vulnerability around night-time that influenced their quality and experiences of sleep. Sleep and night-time were predominately closely connected to their social identities and discussed in the context of their biographies and current and / or previous personal relationships, such as, caring roles, paid work, and domestic roles and responsibilities. In this context gender, age and the body were closely intertwined within the participant’s discourses.

5.2 Family carers predominately discussed sleep in relation to their roles and responsibilities as carers, in particular, they focused on the quality and amount of sleep of the person that they cared for, often to the detriment of their own sleep. The health and social care staff emphasised the organisation of sleep, most notably, the temporal and spatial management of sleep. This included the management of sleep practices, the monitoring of sleep, the timeliness and place of sleep, and issues concerning ‘risk’ and safety for the person with dementia. The discourses of the health and social care staff predominately focused on sleep practices and environmental dimensions of sleep, such as, bodily care and the surveillance of sleep in private space.

5.3 These different perspectives, whilst at the same time both distinct and separate and interconnected and interchangeable, denote varying positions and concerns in relation to sleep. The older people with dementia are talking about their own sleep or non-sleep. Their concerns are about the immediate, the intimate, the bodily and the personal dimensions of sleep. The family carers are talking about relationships between their own sleep and the sleep of the person with dementia, for whilst they are monitoring the sleep of the person they care for, this is inextricably linked to their own sleep. This contrasts with the discourses of the health and social care staff that are making observations and discussing the sleep of persons for whom they have responsibility in the context of care. Within the formal care relationship they are moreover the conscious waking actors, the people being cared for are the sleepers, whose sleep is to be managed and observed.

5.4 And this relationship is an inherently unequal one, for as Leder says ‘My own sleeping body is one thing I will never directly see’ (1990, p.58). We are not aware of our own sleep that is usually only seen by intimate others. Power relations are thereby reconstituted in the formal care relationship in which the waking conscious actors can control the sleep of others. Sleep and sleeping thereby highlight our embodied vulnerabilities (Williams, 2007b). Waking conscious actors can control and manipulate the environment in which we sleep with the power balance being disproportionately in favour of those who are awake. We can also represent dangers to ourselves while sleeping. Older people with dementia were not always aware of their current surroundings when they awakened which engendered a heightened sense of vulnerability. It was these vulnerabilities and disparities in power relations that further underlie some of the key tensions surrounding sleep within the care context: the temporal and spatial dimensions of sleep.

5.5 Spatio-temporal routines of institutional life are central to how care is structured (cf. Twigg, 2006). The rituals and practices of sleep associated with the temporal ordering of care, such as, getting up and going to bed, were significant for the participants. Sleep is also a biological state that can lead to disparities between the needs of people who are dependent on others for their bodily activities and the working organisation of the health and social care staff. Care staff work to schedules that assign periods of clock-based time to clients: a rational, abstract and commodified allocation of time. In contrast, bodily needs are unpredictable, fluid and experiential: ‘The body also has its own timings’ (Twigg, 2006, p.128). In particular, older people with dementia disrupt the routines of institutional life by awaking and getting up frequently at night, or staying in bed during the day. The monitoring and observation of sleep therefore becomes routinised as part of the regulation and ordering of the temporal dimensions of care.

5.6 The observation of sleep does, however, intrude on the privacy of the person with dementia for the bedroom is constructed as a private space within Western societies (Lee-Treweek, 2001). Elias (1978/1939) has, for example, traced the historical process of how sleep became civilized and removed behind the scenes of public life (Williams, 2002; 2005); and in everyday life we predominately present ourselves to the public world as waking conscious beings. In the context of (institutional) care, tensions between public and private dimensions of the bedroom were especially heightened during periods of sleep and night-time. As the data from this study has shown, the care work of health and social care staff crosses a significant public / private boundary in which the privacy, rights and responsibilities associated with sleep needed to be managed. The surveillance of dormant bodies during night-time therefore denotes a level of intimacy and vulnerability that is usually only reserved for intimate others.

Conclusions

6.1 This paper has highlighted some of the complexities surrounding sleep in terms of the differing perspectives between waking and sleeping actors and the temporal and spatial dimensions of sleep. An imbalance in power relations is evident within the context of night-time and sleeping. More understanding about the sleep of older people with dementia is thereby essential to ensure inclusive and empowering strategies of care can be developed. We have started to explore some of these key tensions but the original focus of this study was not sleep. This is not therefore a complete picture about the complex interconnections between institutional and individual logics and sleep within the temporal-spatial ordering of care. Important insights into the sleep and sleep practices amongst older people with dementia have nevertheless been generated.

6.2 This paper has opened up the possibilities for understanding more about the social worlds of older people with dementia that includes their sleeping as well as their waking lives. Researchers interested in exploring people’s everyday worlds and quality of life issues may benefit from integrating the perspectives and experiences of sleep within their analyses. For people with dementia, this research highlights the numerous challenges surrounding the promotion of sleep within the context of care. It also raises questions about the apparent absence of sleep from policy and practice discourses where the care and comfort of older people with dementia are concerned. A more inclusive narrative of the lived experience of dementia can therefore help illuminate the sleep experience in the context of care and the complex power relations and vulnerabilities associated with sleep and sleeping.

Acknowedgements

The authors are indebted to Professors Williams and Arber for their generosity in time, encouragement, insightful comments and support throughout the development of this paper. We would also like to thank the anonymous reviewers for their expertise, insightful comments and scholarship that significantly enhanced our ideas. The data presented in this paper is drawn from a collaborative study between Oxford Brookes University and Anchor Trust, funded by Community Fund.

Notes

1 The origins of this paper began as part of the ESRC Sleep and Society seminar series 2004-6: a collaboration between Professor Simon Williams (University of Warwick) and Professor Sara Arber (University of Surrey)`. See <http://www2.warwick.ac.uk/fac/cross_fac/healthatwarwick/news/sleepandsociety/>. An earlier version of this paper was presented at this seminar series in October 2005. During this seminar series there were debates about the extent to which researchers were blind to sleep and sleep practices within their data. It was suggested that whilst data about people’s everyday lives may be replete with references and perspectives about sleep these were unseen by researchers whose analytic concerns have predominately been on people’s conscious waking hours. With this question in mind, the data presented in this paper were drawn from a project Empowering Older People with Dementia: balancing rights, risks and choice in different care settings undertaken between 1999 – 2001 that examined decision-making areas in the everyday lives of older people with dementia. Although the focus of the study was not sleep, we returned to our data to specifically examine any references to sleep.

2 The management of sleep of older people with dementia further takes place in a context in which old age is increasingly rationalised and managed within a discourse of ‘activity’ (Katz, 2000). During the late twentieth century there was a significant increase in standardized frameworks, such as, the Activities of Daily Living, and activity programmes for older people and older people with dementia. Sleep and napping have an ambiguous position within these activity frameworks.

3 A diagnosis of dementia was confirmed from the case notes.

4 This detailed schedule may be in contrast to the schedules of other older people with dementia.

5 The relationship between sleep and privacy is complex. Sleep can be described as an isolating affair as we withdraw from the intersubjective world and lose consciousness. Our bedrooms can be constructed as private in Western contemporary societies. Sleep has not however always been associated with privacy. Elias (1978/1939) , for example, traces the historical processes in which sleep became privatised and removed behind the scenes of public life. Privacy can therefore be described as a variable socially, culturally and historically. With thanks to Professor Simon Williams for this note.

6 The different philosophies of care, the different levels of qualifications of the health and social care staff, and contrasting management styles directly influenced the discourses of the health and social care staff and require further research to further illuminate complex power relations in the context of care.

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