The need for a EU-level carers strategy: facts and figures

1. European Parliament Interest Group on Carers Exploring the potential of an EU-level carers strategy European Parliament - Brussels, 15 October 2013 The need for a EU-level carers strategy: facts and figures Giovanni Lamura (researcher at INRCA & Eurocarers vice-president for research) INRCA - Italian National Institute of Health and Science on Ageing Centre for Socio-Economic Research on Ageing, Ancona, Italy; e-mail: g.lamura@inrca.it

2. Contents of presentation Definition of carer Carers are the backbone of long-term care… … but are increasingly “under pressure”! Impact of such “pressure” Are we currently doing enough? Final remarks

3. Who is an (informal) “carer”? A carer is any person who provides care - usually unpaid - to someone with a chronic illness, disability or other long lasting health or care need, outside a professional or formal employment framework.

4. “Carers are the backbone of our (long-term) care systems” “About 80% of care across the EU is provided by spouses, daughters, other relatives and friends...”

5. People aged 65 and older receiving care (cash or in-kind), by care setting (2009) Fonte: Rodrigues et al 2012

6. 6 Areas of need for which older people are completely dependent on others for help (in %)

7. Provision-mix indomestic care (in %)

8. Provision-mix inemotional/psychological care (%)

9. Provision-mix intransportation services (%)

10. Over 50 population providing informal care Source: Rodrigues et al. 2012

11. Female carers on total carers of older people (%) %

12. Population caring for an older or disabled relative at least once or twice a week (EU-28) 12 Source: Anderson 2013

13. The “economic” value of informal care Estimates on the economic value of unpaid informal care in EU Member States range from 50 to 90 percent of the overall costs of formal long-term care provision. Estimated value of contribution made by carers in the UK: 140 Mrd € per year. Estimated value of contribution made by carers in Ireland: 5,3 Mrd € per year (27% of Dept. of social protection’s budget) Source: www.carersuk.org/media/k2/attachments/Valuing_carers_2011___Carers_UK.pdf

14. Informal carers: an indispensable component of sustainable care systems… Carers are currently an indispensable component of the provision, organisation and sustainability of our health and social care systems; ➜ without informal carers, formal care provision would simply be unsustainable, and many care needs neglected!

15. … and even more so in the next future! Carers will become even more important in view of growing health and long-term care needs, due to population ageing and the increasing prevalence of frailty and chronic disease.

16. … and even more so in the next future!

17. But availability of informal care is under pressure, too! • This is due to a number of demographic and socio-economic developments: • lower birth rates • smaller families • greater physical distances between relatives • rising number of women entering the labour market • a prolonged working life.

18. Old-age support ratio (15-64 year old / over 65 year old) (2012) Africa Asia Latin America North America Europe Oceania Source: United Nations 2012

19. Age structure of EU-27 population Source: Pearce et al 1999

20. Over 65 year old population living in multigenerational households (3 or more generations) (2010)

21. Living distance from parents in some EU countries Source: Isengard 2013

22. Employment status of family carers by country Employed Not employed

23. Change in labour-force participation by European women aged 55-64 years between 2000 and 2010 Source: Rachel et al. 2013

24. Change in employment rate in 55-64 year old population in 2009-2011 Source: Pearce et al 1999

25. Estimated shortages in some health care professions in the EU by 2020 Source: European Commmission 2012

26. Impact of such pressure • At the micro-individual level: for carers themselves • At the macro-societal level: for the labour market and for the health and social care systems.

27. Carers’ main motivations to provide care

28. What factors influence carers’ decision to care?

29. Frequency of negative effects due to caregiving

30. Frequency of elder abuse by family carers Different definitions and methodologies in collecting data lead to divergent findings in terms of prevalence of elder abuse perpetrated by family caregivers (NCEA 2002). Taking for instance physical abuse: 5% (Paveza et al 1992); 6% (Pillemer & Suiter 1992); 11% (Compton et al. 1997); 12% of all callers to a help line for caregivers (Coyne et al 1993); 23% of non-spousal carers (Wolf 1996).

31. Risk factors for carer’s burden(odds-ratio=probability for carer to experience high burden)

32. Potential risk factors for “neglect”(% of carers’ willingness to continue caregiving)

33. % of households suffering financial catastrophe from health related expenditures Source: Scheil-Adlung & Kuhl 2011

34. 34 Restrictions reported by employed carers % N = 4427; only carers <= 65 years

35. 35 Restrictions reported by not employed carers (in %) N = 2093; only carers <= 65 years Source: Lamura et al. 2008

36. Are we currently doing enough for carers in Europe?

37. Use of specific support services for carers (%)

38. Carers using support services, by country %

39. Cycle of QoL in carers of relatives with incontinence: powerlessness ➜ acceptance ➜ burden QoL for carers of relatives with incontinence over time QoL for carers of relatives with incontinent over time Acceptance (14.27) (n=122) ** Burden (12.12) (n=95) Powerlessness (13.02) (n=87) Q1. For how long have you been taking care of[INSERT RELATIVE FROM S5D]?Base n=304 Statistical significance: **: p<.05

40. Service characteristics considered most important %

41. Austria: two thirds of home care workers with migration background Germany: estimates of 100.000 care migrants Denmark: 11% of all LTC workers have a migration background UK: 19% of care workers are foreign-born Israel: Currently about 1out of 3 frail elderly persons employ a migrant live-in homecare worker, hired through the LTCI scheme Italy: 13% of households older people employ migrant LTC workers Greece: 26% of migrants (80% of women) are employed in households Spain: permits for domestic work to foreigners: from 32% in 2000 to over 61% in 2009; Turkey: “it’s normal to employ Moldovan [& Bulgarian] domestic workers in private households”. Canada & US: foreign workers: one fifth of total LTC workforce Migrant care workers in selected countries

42. Migrant home carers in Italy by contractual conditions

43. Most burdening difficulties experienced by migrant care workers % Lucchetti et al. 2005

44. Migrant care workers: opportunities & challenges Opportunities: economic convenience: to both recipients and migrants (low housing costs, wage differentials & “black market”) publicly incentivated by increasing cash-for-care schemes tailored care: personalised response to elders and carers delayed or lower institutionalisation rates Challenges: quality of care: qualification of migrant care workers labour market: control of undeclared work exploitation of migrant care workers: overlap with gender care drain in sending countries: who provides care there?

45. Final remarks • While carers are crucial to ensure a socially and economically sustainable support to people in need of care... 2. … carers get little recognition for the valuable work they do… 3. … and their interests are rarely considered in policies that can actually heavily impact on them (health, social care, education, employment, social security, transportation, housing, new techonologies etc.) 4. At the macro level, if informal care provision is not properly supported, it can result in lower productivity for those carers that combine care and work…\ 5. … and lead to increasing health and welfare costs, due to carers’ physical and mental health problems related to unmonitored caregiving constraints.

46. That’s why it’s necessary... • to continue raising awareness on the significant contribution made by carers to our welfare systems and the economy as a whole, and the need to safeguard this contribution • to ensure that EU and national policies take account of carers (e.g. by promoting their social inclusion) • to further develop support services for carers and to enable carers to remain in paid employment... In one word: to urgently adopt a coherent, integrated approach – that is, a STRATEGY – to mainstream caregiving across all major policy areas, starting at EU level, to ensure that all Member States are made equally aware about the necessity of such a crucial commitment!

47. Thank you!

48. References Anderson R. (2013) Work-care reconciliation as a policy priority in Europe: Role of companies and social partners. Paper presented at the International conference on “Carers and work-care reconciliation”, Leeds, 13 August. European Union (2012) Commission Staff working Document on an Action Plan for the EU health workforce. Brussels. ILO (2010) World Social Security Report 2010/2011. Providing coverage in times of crisis and beyond. Geneva. Isengard B. (2013) The apple doesn’t live far from the tree: living istances between parents and their adult children in Europe. Comparative Population Studies, 38(2), 237-262. Jagger et al. (2013) Mind the gap – reaching the European target of a 2-year increase in healthy life years in the next decade. European Journal of Public Health, 1-5. Lamura G., Döhner H., Kofahl C. on behalf of the EUROFAMCARE Consortium (2008) Services for Supporting Family Carers of Older People in Europe: Characteristics, Coverage and Usage. A Six-Country Comparative Study. Lit Verlag, Hamburg. Rodrigues R., Huber M. and Lamura G. (eds.) (2012) Facts and Figures on Healthy Ageing and Long-Term Care in Europe and North America. European Centre for Social Welfare Policy and Research, Vienna (http://www.euro.centre.org/data/LTC_Final.pdf). Scheil-Adlung X. and Kuhl C. (2011) Addressing inequities in access to health care for vulnerable groups in countries of the European region. ILO, Geneva. Triantafillou et al. (2011) Informal care in the long-term care system. Executive Summary. Athens/Vienna. United Nations (2012) Population ageing and development 2012. United Nations, New York. Wittgenstein Centre for demography and global human capuital (2013) European Demographic data sheet 2012. Vienna