Developments in carer research

1. Eurocarers Autumn Seminar – Brussels, 16th November 2009 Developments in carer research 2: PhD, CEO Vilans – Utrecht, Netherlands Giovanni Lamura1 and Henk Nies2 1: PhD, Vice-president Eurocarers - INRCA, Ancona, Italy

2. Contents of presentation • Introduction • Complexities of comparative research • Impact of caregiving on carers: • health inequalities • income • employment • Support services for carers • service use and barriers to access • recent trends: cash-for-care schemes and migrant care work • Final remarks

3. Introduction: the Eurocarers researchers Sweden Finland United Kingdom Netherlands Germany Belgium Italy Greece Universities Independent organisations Not-for-profit

4. 2. Complexities of comparative research No unanimity on definitions of ‘carer’, care-living responsibilities, ´heavy burden´ Limited data on carers of non-older people Data not collected in all EU member states: lack of data Evidence on ‘what works’ not necessarily transferable

5. Example 1: estimated numbers of carers 100-125 million (low threshold) to 19 million (20+ hours/week)

6. 2-4% of children and young people who provide care UK: 175.000 (< 18), NL: 95.000 to 195.000 (< 25) Average age: 12, 50% lone parent Cared for: 50 % physical, 29 % mental health, 17 % mental impairments (learning difficulties) 20 %: intimate personal care, 11 % child care 20 % > 20 hrs per week, 30 %: 11-20 hrs NL: low self esteem, prone to depression, problems at school: declining performance, leave school early At risk for psychiatric disorders/addiction in later life if parent suffers from psychiatric disorders Example 2: Young carers

7. 7 3. Impact of caregiving on carers 7

8. Carers > 50 hours a week: > 3 x higher risk of poor health Two third: higher mortality risk Physical and psychological problems: high incidence of depression Abuse as a consequence of over-burdened carers Exclusion and isolation Working carers: one out of five in poor health Those who give up working are in poor health (> 5 years caring tasks) Young carers (< 18): similar picture 3a. Health inequalities I

9. 3a. Health inequalities II Risk of carer burden increases when: • carers and care recipients live in same household • high levels of care are provided • care recipient has behavioural problems • carers and care recipients experience conflict • carer does not feel supported by social services Parent carers of disabled children: likely to be in poor health themselves

10. Loss of income and higher expenses (NL: 69 % of carers) UK: income loss € 15,000 to € 20,000 per annum; NL: + € 1,000 per annum on average) NL: on total population of carers: 1 billion income loss (complete or partial leaving labour market) UK: One third: debts, one out of ten: cannot afford rent of mortgage Parent carers of disabled children less likely to be in paid work 3b. Income

11. 40% (est.) of carers of old people in paid work Old people: retired people; housewives; part-time workers (mainly women); unemployed 20%: gives up job or works significantly less Consequences for income, pensions, career Double negative effect for women Less opportunities for training, promotion, worse paid jobs, less responsible positions, forced to part-time jobs Double risk in 45-54 year old age group Work as a relief from caring tasks 3c. Employment I

12. Employers are often not supportive (UK: 50%) Carers breaks are scarce Many carers would like to continue working Half of part-time working carers work part-time because of caring tasks; in NL: 200.000 people In majority of cases caring affects the job 3c. Employment II

13. 13 4. Support services to carers

14. 14 4a. Service use and barriers to access Data sources: Eurofamcare http://www.uke.de/extern/eurofamcare/ & Eurobarometer (http://ec.europa.eu/public_opinion/archives/ebs/ebs_283_en.pdf)

15. Carers using support services, by type of service (%)

16. Carers using support services, by country (%)

17. Main barriers to service use by carers

18. Red: less than 15% of citizens agree Green: more than 30% of citizens agree Source: Eurobarometer 2007

19. Most important types of support (%)

20. Advice about available helps & how to access them (%)

21. Advice about available helps & how to access them (%)

22. Information about the older person‘s disease (%)

23. Information about the older person‘s disease (%)

24. More money to provide better care (%)

25. More money to provide better care (%)

26. Most important service characteristics (%)

27. 27 4b. Recent trends: cash-for-care schemes* and migrant care work** Data sources: *: Report on “Care provision’s within families and its socio-economic impact on care providers” by University of York and Vilans (http://www.york.ac.uk/inst/spru/research/pdf/EUCarers.pdf) & **: INRCA studies on migrant care work (http://www.euro.centre.org/data/1253898745_87208.pdf)

28. Models of cash-for-care schemes to provide financial support to family carers → through the cared-for person: • Personal budgets (e.g. England, Netherlands) • Care/attendance allowances (e.g. Germany, Austria, Italy, Spain) → directly to the carer: • Income replacement (e.g. UK, Ireland) • Carers employed by municipality (e.g. Finland, Norway, Sweden) • Payment acknowledging carer role (e.g. NL) Source: Arksey 2009

29. Models of cash-for-care schemes to provide financial support to family carers → through the cared-for person: • Personal budgets (e.g. England, Netherlands) • Care/attendance allowances (e.g. Germany, Austria, Italy, Spain) → directly to the carer: • Income replacement (e.g. UK, Ireland) • Carers employed by municipality (e.g. Finland, Norway, Sweden) • Payment acknowledging carer role (e.g. NL) Source: Arksey 2009

30. Models of cash-for-care schemes to provide financial support to family carers → through the cared-for person: • Personal budgets (e.g. England, Netherlands) • Care/attendance allowances (e.g. Germany, Austria, Italy, Spain) → directly to the carer: • Income replacement (e.g. UK, Ireland) • Carers employed by municipality (e.g. Finland, Norway, Sweden) • Payment acknowledging carer role (e.g. NL) Source: Arksey 2009

31. Impact of cash-for-care on carers Advantages: • financialrecognition of informal (i.e. unpaid) care; • higher flexibility and user’s choice • lower public spending Disadvantages (according to the type of model): • Carers risk being financially dependent on older person • Carers’ ability to participate in paid work is reduced • Increased obligations on carers (if services are limited) • Perpetuating gender inequality • Prevention of formal service development • Inefficient / ”grey” use of labour force Source: Arksey 2009

32. Impact of cash-for-care on carers Advantages: • financialrecognition of informal (i.e. unpaid) care; • higher flexibility and user’s choice • lower public spending Disadvantages (according to the type of model): • Carers risk being financially dependent on older person • Carers’ ability to participate in paid work is reduced • Perpetuating gender inequality • Prevention of formal service development • Inefficient / ”grey” use of labour force Source: Arksey 2009

33. Italy: 13% of households caring for older people employ privately migrant care workers (Lamura et al. 2008); Greece: 26% of migrants (but 80% of women!) are employed in personal care/household services (2007); Spain: permits for domestic work to foreigners raised from 33.000 in 1999 to almost 230.000 in 2006; Turkey: “it has almost become normal to employ Moldovan [& Bulgarian] domestic workers in private households” (Kaska 2006 in Suter 2008); Israel: Currently about 1out of 3 frail elderly persons employ a migrant live-in homecare worker (Iecovich 2009) Austria: over two thirds of home care workers have a migration background (Wiener Institut für Sozialpolitik, 2008) Germany: estimates speak of 100.000 care migrants (DIP 2009) Employment of migrant care workers in LTC

34. Domestic workers in Italy by nationality withforeign Totalnationality % 1991 181.096 35.740 16,5 1995 192.942 67.697 35,1 2000 256.803 136.619 53,2 2001 268.730 139.505 51,9 2002 541.098 409.307 75,6 2003 542.651 411.425 75,8 2004 502.547 371.830 74,0 2005 471.085 342.065 72,6 2007 774.000* 700.000* 90,4* *: estimates Sources: until 2005: INPS (several years); 2007: Pasquinelli & Rusmini 2008

35. Italian households with a migrant home care worker by “type” of employment

36. Households with migrant home care workers by dependency level of older person %

37. Carers employing migrant care workers,by relationship and working status %

38. Carers employing migrant workers by answer to question: „Are you willingly to continue providing care?“ %

39. Employment of migrant care workers by carer‘s attitude on residential care („Would you consider Elder‘s placement in a care home?“) %

40. Service characteristics considered most relevant by carers, by employment of migrant care workers %

41. Migrant home carers in Italy, by kind of employment contract Lucchetti et al. 2005

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

43. Care drain risks in migrants’ home countries • Migrant women’s left behind children: well-off but socially deprived & cared-for by grandmothers • Mental illnesses of migrant women returning home after long years of isolated care work • educational & training costs saved by “host” countries and borne by “sending” countries

44. 5. Final remarks Streamline definitions and data collection Pay attention to specific target groups Caring is rewarding, but also a serious health risk, affecting at the same time income and carers’ position on the labor market Huge differences across Europe in service delivery: need for exchange and research on services delivery & effective interventions Rethinking cash-for-care from a carers’ perspective Migrant workers are an example of the EU relevance of the impact of caring in society

45. Thank you!