CARERS IN THE 21ST CENTURY: DEVELOPING THE EVIDENCE BASE

1. CARERS IN THE 21ST CENTURY: DEVELOPING THE EVIDENCE BASE Setting the Scene: A Profile of Contemporary Caregiving in the UK Dr Alisoun Milne, Reader in Social Gerontology & Social Work, School of Social Policy, Sociology & Social Research, University of Kent

2. Caring in the UK: What we know • 6.4 million carers in the UK: 58% women & 42% men • Majority are mid life women but 2% are young carers & 25% are older • 68% care for up to 19 hrs pw; 11% for 11-49; 21% for 50+ • Nearly 500,000 dementia carers in England: provide 24 hrs of care pw on average (NAO, 2007) • Economic value of family care estimated to be £119 billion • 58% of carers leave paid work to provide care (Milne et al, 2012) • Two thirds report health problems ‘related to caring’ – • 40% of carers have significant depression levels (Pinquart et al, 2003) • Carers providing <20 hrs of care pw over extended periods have twice the risk of experiencing psychological distress than non carers (Hirst, 2005) • Intensive care is linked with a 23% higher risk of stroke • Older carers who report ‘strain’ have a 63% higher likelihood of death in a 4 yr period than non-carers (Haley et al, 2010)

3. Problems with what we know

4. Limitations of Conceptual Understanding • Conceptual issues: defining care/carer/ caring: carers as a universal ‘population’ • ‘True’ extent of caregiving in the UK: issues around carers self-identifying (e.g. spouses, BME carers) • May be a bureaucratically generated term (Molyneauxet al, 2011) • Evidence base tends to be clustered around: • Groups of carers (e.g. older carers, young carers, dementia carers) • Intensity of caregiving (tending, moderate, intensive) • Effects of caring (e.g. mental ill health, poverty, employment)

5. Limitations of Theoretical Knowledge (2) • Theoretical issues: lenses through which we understand care are relatively narrow & separate • Perspectives range from feminist analysis of caring, to attachment theory • Shift from models of the carer/cared for dichotomy to those that characterise care as about ‘interdependence and reciprocity’ (Nolan et al, 2004) • Temporal nature of nature also highlighted: caring ‘evolves over time’ (Bowlby et al, 2010) • A strong & coherent theoretical platform would strengthen carers position & status

6. Limitations of Research Knowledge (3): Capturing Change, Complexity & Impact • Research challenges: • Although there is a lot of research on carers and caring it is varied both in terms of focus, size & quality • Most carers’ research focuses on either a specific group of carers, a specific issue or intervention, or explores the impact of caring on carers lives/health/work • Much of the evidence base in based on small scale qualitative studies although more recent work has attempted broader analysis of policy, national initiatives and/or attempted to evaluate quantitatively carers’ experiences • Need to capture the dynamic & temporal nature of care: rarely static • Capturing the dyadic nature of caring is a challenge: mutual, interdependent & often embedded in a long term relationship = important for research AND policy • Robust evidence of the effectiveness of support & interventions on carers’ lives & health - & those they care for – especially over the longer term is limited (Larkin & Milne, submitted)

7. Looking Ahead... 21st Century Issues • By 2037 the number of carers is estimated to reach 9 million (Carers UK, 2010; 2012) • Current & future care needs of an ageing population: ‘tipping point of care’ reached in 2017 (Pickard, 2008) • Additional demands on carers arising from technological advances enabling people with complex health conditions to remain at home (Glendinning et al, 2009) • Further, carers themselves will be older & more diverse & likely to belong to smaller family networks • Changing patterns of caregiving e.g. increase in number of families with multi-generational caring roles • EU agenda too - ageing of both the EU population & of carers is of widespread policy, practice & research concern

8. Carers & Policy • Carers have moved from ‘the wings of welfare’ to being legitimate recipients of support in their own right • Carers are the focus of a number of policies focusing on their rights to have: their needs assessed; health and well being protected; access support, training & employment; and ‘live a life outside caring’ (HM Govt, 2008; DH, 2010, 2012) • Policy has a ambivalent relationship with carers • It needs them to carry on caring but acknowledges a duty to protect carers from preventable ill health & other negative consequences of intensive long term caring • How does policy conceptualise carers - Are they co-producers, providers or partners in the planning & delivery of care? Or are they service users in their own right? Or none of these?

9. Aims: Seminar Series & Seminar 1 Overarching seminar series aims: • Identify contemporary and future issues for carers in the UK • Review existing research evidence about the effectiveness of policy, services & interventions for carers and those they support • Explore key theoretical, conceptual & methodological challenges facing the research community • Encourage academic, third sector, practitioner & policy debate • Develop a future agenda for research with a focus on effectiveness & outcomes • Establish a carers research network Seminar 1 - Carers & Policy in 21st Century - aims to: • Identify contemporary & future issues for carers policy in the UK • Progress critical awareness of carers policy • Compare a range of perspectives on carers policy • Engage in debate about the future of carers research around policy

10. References Bowlbyet al (2010) Interdependency & Care over the Life Course, Abingdon: Routledge Carers UK (2012) Facts about Carers 2012, London: Carers UK Carers UK (2010) Tipping point for care, London: Carers UK Department of Health (2010) Recognised, valued & supported: next steps for the Carers Strategy, DH Department of Health (2012) Care & Welfare Bill, London, DH Glendinning, C., et al (2009) Care Provision within Families and its Socio-Economic Impact on Care Providers, SPRU, University of York Haley, et al., (2010) Care-giving strain & estimated risk for stroke & coronary heart disease amongst spouse carers, Stroke, 41, 331-6 Hirst, M. (2005) Carer distress: a prospective population based study, Social Science & Medicine, 61(3), HM Government (2008) Carers at the Heart of 21st Century Families & Communities: A Caring System on Your Side, London, Stationary Office Larkin, M & Milne, A. (submitted) Carer Empowerment in the UK: A Critical Reflection, Social Policy & Society Milne, A., et al, (2012) The Intersection of Work and care: Evidence from a Local Case Study, European Journal of Social Work, on line: 17 Sep 2012 Molyneaux, V et al (2011) Recosndiering the term carer: a critique of the universal adoption of the term ‘carer’, Ageing and Society, 31, 422-437 National Audit Office (2007) Improving Services for People with Dementia, London: NAO Nolan, M et al, (2004) Beyond ‘Person Centred Care’, Int’l Journal of Older People’s Nursing, 13, 45-53 Pickard. L (2008) Informal care for older people provided by their adult children: projections of supply & demand to 2041 in England, Report to the Strategy Unit & DH Pinquart, M., et al, (2003) Differences between caregivers & non-caregivers in psychological health & physical health: a meta-analysis, Psychology & Ageing, 18(2), 250–67