‘Caring for Carers: A Problem with Identity

1. BSG Conference 2006 – The Ageing Jigsaw ‘Caring for Carers: A Problem with Identity Jenny Perry All Wales Alliance for Research Development in health & social care Institute of Medical and Social Care Research University of Wales, Bangor E-mail: sps20a@bangor.ac.uk

2. The National Carers Strategy in England • ‘What carers do should be properly recognised, and properly supported – and the Government should play its part. Carers should be able to take pride in what they do. And in turn, we should take pride in carers. I am determined to see that they – and that we all do.’ Tony Blair (1999) • Caring about Carers: A National Strategy for Carers (1999)aimed to give carers more control over their lives and over the nature and timing of services, to provide an inclusive approach to meet the needs of all carers and for identified needs to be taken into account in service developments which included older people as a ‘carers’ group.

3. The Facts • 1 in 8 people in Britain is now a carer (NCSE 1999) • 9 out of 10 carers care for a relative (ibid) • 5.7 million carers in England - 1.7 million care for > 20 hrs a week & 855,000 care for > 50 hrs a week (ibid) • Estimated that over next 30 yrs UK will need extra 3 million carers bringing number up to 9 million (ACE 2006) • 3.3 million are women & 2.4 million are men - most likely to be in 45 – 65 yrs age group - the biggest group of carers by age - comprises 41% of the 5.7 million. Carers over 65 yrs of age make up > quarter of carers population, comprises 27% (NCSE 1999) • Economically - 26% of caring population are retired (ibid) • Arksey et al (2003)- ‘ little research has been conducted to look at access to health and social care in relation to oldercarers.’

4. Sample & Method • Presentation primarily concerned with findings and implications from NCSE- data from parallel study of NCSW also considered • Carers-1st postal survey - 20 study sites across England - response rate = 1,442 • Carers-2nd postal survey from follow-up sample - response rate = 720/ 52% - top-up sample 65/ 13% • Face-to-face interviews conducted - 88 carers & 32 care recipients - interviewers recruited & trained from local carer orgs • Phase 2 interviews - 39 carers & 37 care recipients agreed to take part in follow-ups • 10 focus groups held with carers across the UK. • 65 semi-structured tel. interviews with staff - 20 study sites - reps from LA’s, PCT’s and vol. orgs, focusing on implementation of CS at national and local levels. .

5. Analysis • Initial examination of transcripts – presented problems with identifying carers & carers identifying themselves. • Data for analysis imported into QSR N Vivo 6 and coded to nodes, according to themes from interview transcripts • Successful implementation of strategy requires offering appropriate services, this requires identification of carers in the first instance. Access to services tailored to meet needs requires carers to identify themselves as carers to be eligible. • A node for ‘carers & identity’ was created in in N Vivo. Ethnomethodological approach used, drawing on data coded to ‘carers & identity’ intersected with ‘aged over 60 yrs’ - to outline implications for policy and practice. • Ethnomethodology - investigation of peoples’ common sense reasoning and practical actions as ongoing accomplishments of everyday life done through talk & interaction (Garfinkel 1967).

6. Findings From examination of the transcripts it was found that to provide services in a diversity of caring contexts, Local Authorities, Primary Care Trusts and Voluntary Organisations need to identify carers; in order to access services ‘carers’ need to ‘identify’ themselves as such. Organisations may have an older persons ‘champion’ but carers are not necessarily within their remit; older carers may not necessarily identify as ‘carers’ because they accept it as part of their family role and not as a chosen separate identity, obligation to care is part of ‘older peoples’ culture. This poses some challenges for staff in the successful implementation of the Strategy. Direct quotes from the interview transcripts are presented in the next six slides to illustrate these points.

7. Staff Perspectives: Quotes • ‘I do think people do have difficulty identifying themselves as carers, I think a lot of people wouldn’t know that they are considered as carers and that there was a title for what they are doing. A large proportion of the people we have on our books are over 65, caring for equally older people. Then we’ve got some very frail carers and ill carers themselves, caring for the spouses and struggling with their own health.’ CSES1011 • ‘Just older carers are not quite sure, they will often say to you “I’m just doing what comes naturally to me, my husband needs…” A lot of people don’tactually realize that what they are doing is quite a significant role and they don’t realize that they can get emotional, financial and practical support. Again it is a culture with older people they don’t want to be seen to get charity.’ CSES1012

8. Staff perspectives: Quotes continued… • ‘ I’ve met husbands of older ladies that would think you were barking if you dared to suggest to them that they were a carer, they believe it is just what they signed up to.’ CSES1025 • ‘…particularly older carers, who almost see it as their duty, worry that if they say they are not coping that people will be taken into care, or that the situation will get out of their control. So it is the more anonymous ones that we don't know about, that I don't think their needs are always met …’CSES1916

9. Carer Perspectives: Quotes • *Q4. what are the main challenges that you face as a carer? ‘Don’t see it like that. I see it as my normal life.’ CSECC7440 • *Q5. how do you cope with these challenges? ‘I say to myself that it is my mother and I love her. She was good to me. I belong to a generation that feels they have to care.’ CSWCC1057

10. Carer Perspectives: Quotes continued… • ‘Recognition of what we are doing and also after we are of pensionable age why does invalid care stop after you are 60? I still care for my dad and my husband.CSWCC0980 • *Q26. why did you turn down an assessment? ‘Because we feel we are coping adequately. With some carers they probably feel fearful that they might be told that the care recipient needs to move into intensive care because they’re finding it difficult.’CSECC426

11. Are staff & carer perspectives in agreement? • ‘…but I think that there are a lot of carers that aren’t identified because they aren’t actually asked.’ CSES1004 • *Q16. what did you think the assessment was for? ‘...Thought it would help my daughter as well as me. First time able to talk about my role…’ CSECC4133

12. Are staff & carer perspectives in agreement?Continued… • ‘... nothing from the strategy has caused problems apart from the definition of “A carer”. It is a complex issue and a simple issue all in the same way, because a carer is just somebody who cares for a friend, family or relative, but what that level of care is –There is no legal definition. I’ve read at least nine books on carers and every book has got a different definition – slightly different. The Kings Fund has got a slightly different one, the Princes Trust has got a different one.’ CSES1012I • ‘Yes bang a few heads together. And get carer’s recognised for what they are.’ We have to carry on for everyone our children, parent, wife, husband etc. I would love someone to come here and do my job for a day.’ CSWCC0971

13. Conclusion • For carers to access services they need to be identified. Older carers do not necessarily identify as ‘carers’ or see themselves in a caring role - they accept it as part of their family role and not as a separate identity. As it has been shown in the interview transcripts, the roles and obligations of family caring are part of the ‘older’ persons culture. This poses some challenges for LA’s, PCT’s etc. in the implementation of the Strategy. • For older carers to have more control over their lives, over the nature and timing of services & for all their needs to be identified, future service development must include consultation with older people in order to successfully implement the strategy. • Therefore, further research needs to be done to establish more efficient ways of identifying older carers and to find more effective ways of engaging older carers in the consultation process of the strategy.