Embodied Vulnerabilities, Sleep and Care

Dr Wendy Martin

Brunel University, UK

Prof Helen Bartlett

Monash University, Australia

Focus of Presentation• To explore interconnections between

vulnerabilities, sleep and care.

• To highlight power relations and roles in relation to sleep and care

• To explore temporal and spatial dimensions of sleep and care

• To focus on the centrality of the ageing body

Embodied Vulnerabilities

“Human beings are biologically frail, socially vulnerable and politically precarious” (p. 186)

[Bryan Turner (2004) The New Medical Sociology. Social Forms of Health

and Illness]

• Significance of everyday routines to enable people to manage their vulnerabilities – “ontological security” (Giddens, 1991, 1992)

• Sleep, ageing and dementia are important illustrations of our (embodied) vulnerabilities

Significance of Sleep and Care

• The rhythm, activities and routines of domestic and institutional life, e.g. meals, bathing and sleep, are structured around the care of the body

• Sleep embodied and embedded within the structure of our everyday lives

• A key symbol in the temporal ordering of daily life

• Sleep / wake patterns routinised into the organisation of care.

• Sleep as biological state / socio-cultural context

Sleep, Care and Dementia

• Disruptions to institutional logic of care (time / space)

• Getting up frequently at night / remaining in bed during the day.

• Space and time for sleeping are not morally neutral

• Sleep of older people with dementia may become increasingly regulated if disruptive sleep patterns become defined in relation to risk, safety and

dependence

Research Study• Paper draws on data from a larger study; secondary analysis

• Aim: to explore how decisions are made for older people with dementia; focus on issues from perspectives of older people with dementia and their carers

• Ethics approval was granted by the local NHS Trust and University research ethics committees

• Stage One: 8 focus groups conducted with health and social care staff, older people and family carers

• Stage 2: 18 semi-structured interviews with people aged 65 years and over, with a known diagnosis of dementia living

in different care settings

Key Themes 1. Older people with dementia and family carers, emphasised

vulnerabilities and experiences of sleep; link to social identities, biographies and roles.

(a) interconnections between health, care, the body and sleep;

(b) memory loss and perceptions of sleep, time and place; (c) a sense of vulnerability around night-time, sleep and

safety.

2. Key concern for the health and social care staff was the organisation of sleep; focus on sleep practices and environmental dimensions of sleep

(a) temporal management of sleep and sleep practices

(b) management of sleep across public/private space: safety, surveillance and privacy

Health, ageing,bodies and sleep

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)

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)

Space and place

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)

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)

Sleep practices

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)

Bereavement and sleep

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)

Memory loss, biography and sleep

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)

Vulnerabilities, risk and night-time

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)

Temporal management of sleep and sleep practices

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)

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)

Body Clock

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)

Safety, surveillance and privacy

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)

Duty of care, risk and choice

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)

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)

Insights into sleep 1. Older people with dementia mainly focused on vulnerabilities and embodied /

experiential aspects of sleep

Gender, age and the body interconnected

Own sleep or non-sleep

Immediate, intimate, bodily, biographical, personal

2. Family carers focused on roles and responsibilities associated with care

Relationships between own sleep and person cared for

3. Health and social care staff emphasised organisation of sleep; esp. temporal / spatial management

Making observations and discussing sleep of people they have a responsibility of care for; formal care relationship

Conscious waking actors, people being care for are

sleepers, whose sleep is managed and observed

Insights into sleep• Reflects power relationships within care relationship

• ‘My own sleeping body is one thing I will never directly see’ (Leder, 1990)

• Waking conscious actors can control sleep / manipulate environment of others

• People with dementia not aware of own surroundings: vulnerabilities of embodied self

• Embodied vulnerabilities are highlighted

• Links to temporal and spatial dimensions of sleep in care context

• Clock based (organisation of care) versus bodily time (dependence for bodily needs): monitoring and observation of sleep routinised as part of regulation / ordering of time

• Public and private boundaries of sleep and bedroom: need to manage privacy, rights and responsibilities

•

Concluding comments• Sleep involves complex processes• Differing positions and concerns about sleep• Significance of temporal / spatial dimensions

of sleep• Power relationships evident• Reflection of our embodied vulnerabilities• Centrality of ageing and bodies • More research into social context of sleep

and sleeping with older people with dementia in care context