Theoretical, Conceptual and Methodological Issues in Researching Support for Carers

1. Theoretical, Conceptual and Methodological Issues in Researching Support for Carers ESRC Seminar: Effective Support for Carers, University of Surrey, 9th September 2013 Sara Arber Centre for Research on Ageing & Gender (CRAG) Department of Sociology University of Surrey, Guildford, UK Email: S.Arber@surrey.ac.uk

2. Vast literature on Care-giving and Carer Burden – Conceptual Issues • Defining the Carer – Many people providing care do not self-identify as a Carer, especially spouses. • What are the differences between ‘normal’ family support and ‘caregiving’? • Assumption of one way direction of care – from carer to care-recipient vs mutual care and reciprocity. • Assumption of a ‘primary carer’ vs web of carers/supporters • See: Mary Larkin & Alisoun Milne (2013) ‘Carers and Empowerment ion the UK: A Critical Reflection’, Social Policy and Society, Online.

3. Diversity of Carers • Midlife women (often seen as the ‘typical’ carer and self-identify as carer) – seek services and support • Spouses – men vs women - gender differences. Age differences - 50s/60s (non-normative) vs 80s (normative, seek less support). • Plus - Often mutual care between older spouses – may be hard to identify who is THE carer. • Adult men co-residing with frail mother (gradual transition to caring and mutual support) – seek less support. • Children as carers – non-normative.

4. Methodological Issues • Who defines what support is needed by carers – Researchers, professional or ?? • Dominance of use of psychological scales in measuring ‘carer needs’ and ‘carer burden’. • ‘Objective’ definitions of needs - from ‘service providers’ or researchers vs ‘subjective’ definitions. • Lack of hearing the voices of Carers themselves. • Need for innovative qualitative research with different groups of carers. • Researchers may dismiss concerns outside the usual paradigm. Case study of sleep.

5. Care-giving andSleep – under researched • Vast literature on care-giving for frail, old, disabled people. Focus on: • Care-giver roles: – Physical tasks, Personal care, Intimate care, Emotional support • Effects on care-giver: - Disruption to women’s work; Restrictions on ‘leisure’; Stress, care-giver burden, psychological well-being; Health consequences • But most chronic conditions, including Alzheimer’s adversely affect sleep, with implications for the carer • Effects on sleep of carers has been neglected – despite care-giving often being required at night

6. Care-giving,Sleep and Health – complex links • Lack of sleep may have health consequences - for both the carer and care receiver • Sleep may be an intermediary factor between Care-giving roles and Stress, Residential Admission Care-giver roles Stress Burden Poor Sleep

7. Methodology – indepth interviews • Indepth interviews with 62 men and women aged 65-95 who had sleep problems (according to the PSQI) • Identified from a representative self-completion questionnaire survey in SE England • Completed by Susan Venn in 2008 as part of the SomnIA (Sleep in Ageing) project • 31 men and 31 women

8. Indepth Interviews– not specifically on caring • Indepth narratives about everyday sleep • Sleep routines – to promote good sleep • How sleep has changed across the life course, e.g. in childhood, effects of own ill-health, serious ill-health of partner and other relatives, divorce, widowhood. • Narratives about sleep difficulties and how they deal with them • NOT – specifically about caregiving

9. 6-fold Typology of Nature of Impact of Care-giving on Sleep • 1. Providing direct physical care at night–tending, changing beds, turning, giving drinks/injections. Sleep disruption, but impact depends on whether can easily fall back to sleep afterwards (which is influenced by other factors) • 2. Anticipation of having to provide night-time care– light, alert sleep, waiting, not going to bed until very late just in case • Monitoring and Surveillance –regular checking on care recipient (CR) during the night • S. Arber and S. Venn (2011) Journal of Aging Studies (25:155-165)

10. 1. Providing direct physical care at night(1) High for co-resident care, especially when caring for a spouse with a life-limiting illness: Six times a night I would get up to go (with wife) to the toilet, and waking, waking all the rest of the time. And, in fact, when we got that (type II diabetes) under control, it would probably go down to three times a night. And then it went up again after Christmas. It was only two or three times a night, but each time would take half an hour literally to get her up there, or to get her onto the commode, and so I used to dread nights…. I used to absolutely dread nights and in retrospect I can see how I was sailing close to the limit of my own endurance... (Ray, 76)

11. 1. Providing direct physical care at night (2) When she (wife had a severe stroke) was ill and upstairs, I used to carry her up and down stairs to the toilet and when she got really bad, then she had to have a commode in here, and, oh, it was horrible… (Doug, 67)

12. 2. Anticipation of providing direct physical care at night Light, alert sleep, not restful/restorative sleep, waiting to go to bed until very late, just in case called: I was like a sentry on guard and she (wife) would initially try and get out of bed and not wake me up, but then she couldn’t get out of bed, so any slight disturbance, I was awake and active… I was like on duty for virtually 24 hours a day. (Ray, 76)

13. 3 – Monitoring their relative at night Impact on sleep of ‘monitoring’ throughout the night: (Wife had severe diabetes for several years, died a year ago).. John: Well, I would go to bed and go to sleep but I always had light sleep like you know, I used to have to always keep tapping her.. just feeling the back of her neck. If I felt the back of her neck all clammy.... I knew something was going to happen... That was when she was going to have a hypo… Int: So, in the night you would just constantly be checking her. When you woke up and touched her, could you get back to sleep? Or did it spoil the quality of your sleep? John: Oh no, I couldn’t get off. Well I would get off, but it was only a light sleep. I don’t know what a good solid sleep is… (John, 67)

14. 6-fold Typology of Nature of Impact of Care-giving on Sleep (cont.) 4. Disturbances by behaviour of CR –getting up, wandering, shouting, esp. with dementia 5. Emotional Labour, Worries and Anxieties about care-recipient includes: (a) Being sensitive to physical and emotional ‘needs’ of care recipient during the night, and providing emotional support; (b) Worries – will he fall out of bed/have to go into a home 6. The ‘legacy’ of care-giving - 3 aspects: (a) feel may still be ‘called’ in the night – light sleep (b) feelings of guilt– should have done more, not put him in a care home (c) continued distressing images of ‘loved one’ in pain, suffering - flashbacks

15. 4. Wandering and disruptive night-time behaviours of relative (1) Caring for a relative with dementia may have greater adverse effects on sleep than caring for relatives with physical health conditions: They (parents) came to live with us and my father had a brain tumour and my mother had dementia, so it was all quite traumatic… He (father) kept falling out of bed, as well… But my mother was the worst because she had dementia… She, talk about sleep, she wouldn’t go to bed until two or three in the morning… She would get up about mid-day, if at all. She didn’t like getting up. So, she was quite difficult to look after. (Susan, 72)

16. 4. – Wandering and disruptive night-time behaviours of relative (2) May precipitate residential admission: My father… we were up two or three times a night with him, and then my husband, and I also looked after him, but mummy she had Alzheimer’s …. And I thought, ‘Well, I can’t cope with this’. Andthen she used to go into bed fine, and then within an hour, she was up again, and then coming in to see what I was doing, sort of thing. So, I think that probably sort of triggered everything off (bad sleeping). Anyway in the end it got so desperate. It is 24 hours a day, I don’t care what anybody says, you cannot look after somebody all that length of time. And I went to the doctor and dissolved into tears, and said ‘I am sorry, but I just can’t go on’. So, he said ‘Come on, we have got somewhere now (a local care home)’… She was in there (care home) for 18 months. I didn’t want to have to do it, but I just had to. (Pamela, 71)

17. 5. Impact of worries, anxieties about care-recipient – ‘emotional labour’ Long-term worries, about the future in relation to care-recipient. Eventually you do sleep, and normally, I wake up about 4 o’clock… I think quite possibly that it is because my mind doesn’t relax, because with David (husband) and his back and legs, and sometimes he has awful pain in his foot and he can’t sleep, and it does worry me that… Oh, I don’t go to sleep, I keep tossing and turning. The trouble is, when you don’t sleep, all the things that bother you, it is going through your mind, and at the moment, we are hoping to get a bungalow, and it’s all this, I hope it won’t be long, you know, goes through my (mind). I hope it won’t be long, because with David... The stairs… when he (David) comes downstairs, it is just awful to see him. And it just worries me. (Edna, 83)

18. Conclusions – Think the ‘unthinkable’…. • Huge amount of research on caregiving and on ‘Carer Burden’. • The large number of interventions to support carers (and reduce Carer Burden) have largely been unsuccessful to date. Why? • Support for carers should be: • Individualised • Personalised • Non-judgemental • & Empowering (not disempowering)

19. Conclusions Need to rethink the meaning of Caring. No longer see Caring as unidimensional (one-way) care from carer to care-receiver – see part of reciprocity. See caring as part of a wider web of relationships between family members and others. Not measure care as primarily ‘task-based’. Undertake innovative qualitative research and ‘hear’ the voices of carers. (including observations) Not dismiss issues that are raised by carers, but researchers think are ‘unimportant’, such as sleep. Future research needs to measure night-time care in a sensitive way, since most is not ‘task-based’ care-giving.

20. Conclusions – Political implications of ‘support’ for carers??? • Does ‘support’ for carers reinforce expectations that carers SHOULD continue to cope (and care) for their relative in the community vs entry into care homes. • Are carers ‘blamed’ if they can’t cope (despite ‘support’)? • Might some ‘Support’ be another ‘burden’ for carers?

21. Acknowledgements • SomnIA (Sleep in Ageing) funded by New Dynamics of Ageing initiative, a multidisciplinary research programme supported by AHRC, BBSRC, EPSRC, ESRC and MRC (RES-339-25-0009) • Thank you • Email: S.Arber@surrey.ac.uk • http://www.soc.surrey.ac.uk/staff/sarber/index.html

22. Selected References on sleep • J Hislop and S Arber (2003) ‘Sleepers wake! The gendered nature of sleep disruption among mid-life women’, Sociology, 37(4): 695-711. • J Hislop and S Arber (2003) ‘Sleep as a social act: A window on gender roles and relationships’ in S. Arber et al. (eds) Gender and Ageing: Changing Roles and Relationships, Maidenhead: Open University Press. • J. Hislop, S. Arber, R. Meadows, S. Venn (2005) ‘Narratives of the Night: The Use of Audio Diaries in Researching Sleep’, Sociological Research Online, 10(4): • S Arber, J Hislop, S Williams (Eds) (2007)’. Special Issue of Sociological Research Online on ‘Gender, Sleep and the Life Course: A Sociological Approach’, 12(5) http://www.socresonline.org.uk/12/5/19.html • Venn S, Arber S, Meadows R and Hislop J (2008) ‘The Fourth Shift: Exploring the gendered nature of sleep disruption among couples with children’, British Journal of Sociology, 59(1): 79-98. • Arber, S. and Venn, S. (2011) ‘Caregiving at night: Understanding the impact on carers’, Journal of Aging Studies. 25: 155-165. • Venn S and Arber S. (2011) ‘Daytime sleep and active ageing in later life’, Ageing and Society, 31(2): 197-216. • Arber, S. and Meadows, R. (2011) ‘Social and Health Patterning of Sleep Quality and Duration’. In S McFall and C Garrington (eds) Understanding Society: Early Findings from the first wave of the UK’s Household Longitudinal Study, Colchester: ISER, University of Essex, pp 88-98.