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

Caring in the UK: What we know6.4 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)

Problems with what we know

Conceptual Issues

Research Issues

Theoretical Issues

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 (Molyneaux et 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)

Limitations of Theoretical Knowledge (2) Theoretical issues: lenses through which we understand care are relatively narrow & separatePerspectives 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

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 & qualityMost 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)

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

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 carersIt 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?

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 UKProgress critical awareness of carers policy Compare a range of perspectives on carers policy Engage in debate about the future of carers research

around policy

References Bowlby et al (2010) Interdependency & Care over the Life Course, Abingdon:

Routledge Carers UK (2012) Facts about Carers 2012, London: Carers UKCarers UK (2010) Tipping point for care, London: Carers UKDepartment of Health (2010) Recognised, valued & supported: next steps for the

Carers Strategy, DHDepartment of Health (2012) Care & Welfare Bill, London, DHGlendinning, 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 amongstspouse carers, Stroke, 41, 331-6Hirst, 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 2012Molyneaux, 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:

NAONolan, M et al, (2004) Beyond ‘Person Centred Care’, Int’l Journal of Older People’s

Nursing, 13, 45-53Pickard. 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