Caring in Scotland: Analysis of Existing Data Sources on Unpaid Carers in Scotland

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EXECUTIVE SUMMARY

Introduction

1. Working in partnership with the Convention of Scottish Local Authorities ( COSLA), the Scottish Government has reviewed the National Strategy for Carers in Scotland. The revision is a collaboration between policy and carers' stakeholders and was informed by reviewing progress made in meeting the recommendations of the Care 21 Report: The Future of Unpaid Care in Scotland.

2. This research report on unpaid carers in Scotland contributes to the review by outlining the main sources of information on carers in Scotland and presents key information which can be used by policy makers and stakeholders working with carers.

Method

3. The research was conducted from May to June 2009, with the data updated in March 2010 and involved combining desk-based research with secondary analysis of large-scale statistical data and other sources of government information.

4. The first phase of the research included a brief review of policy documentation and information on unpaid carers; gathering and synthesising information from local and national carers' organisations; and reviewing relevant legislation and government policy on carers in Scotland.

5. The second phase of the research involved the secondary analysis of quantitative data related to unpaid carers in Scotland collected in the 2001 Census and the Scottish Household Survey ( SHS) 2007/2008. This phase of the project was further supported by the examination of other sources of information and statistics held or collected by different government departments and agencies. This report provides an overview of these, which include data from the Department for Work and Pensions, Audit Scotland and the Social Work Inspection Agency.

Definitions of carers and caring

6. The term 'unpaid carer' is typically defined as:

'Individuals who care for a friend, relative or neighbour without receiving paid income in addition to income received through the benefits system' (Care 21 Report, 2002 p.4)

7. This also reflects the legal definition of a carer as:

' Someone who provides substantial amounts of care on a regular basis for either an adult or a child, where that adult or child receives, or is eligible to receive, support services under the Social Work (Scotland) Act 1968 (section 12AA) or the Children's (Scotland) Act 1995 (Section 24)'.National Minimum Information Standards for Carers Assessment and Support

8. Both of these definitions relate to carers of any age who are caring or intending to care for adults or children.

9. Importantly for the review of the Carers' Strategy in Scotland, young carers are different from adult carers with specific support needs by virtue of being children and young people first and foremost.

Policy Context

National Carers Strategy in Scotland: Previous and current administrations

10. The Strategy for Carers in Scotland was introduced in 1999 by the then Scottish Executive with the aim of supporting carers by improving information, improving local services for carers, introducing legislation and ensuring national standards on short breaks.

11. The revised strategy is being published in July 2010.

The Care 21 Report: Recommendations and response

12. The Care 21 project on the future of unpaid care in Scotland was a Scottish Executive-funded study of statutory and voluntary sector stakeholders on how to meet the future needs of unpaid carers in Scotland.

13. The Report made 22 recommendations for improving the experience of Scottish carers. The then Scottish Executive responded to the Care 21 Report in 2006, setting out priority actions in areas including respite, young carers needs, carer training and improving carers' health.

Legislation related to carers

14. The key pieces of relevant legislation related to carers in Scotland are:

  • The Social Work (Scotland) Act 1968 (Section 12AA)
  • The Children's (Scotland) Act 1995 (Section 24)
  • The Community Care and Health (Scotland) Act 2002

15. These provide the legal definitions of a carer / young carer in Scotland and give all carers a statutory right to request an independent carer's assessment of their ability to care for another person(s), in addition to any assessments the cared-for person receives of their needs.

A new relationship with local government

16. With the election of the SNP-led Scottish Government administration in 2007, a new relationship with local government was established enshrined in the joint Concordat. This reflects a view that while strategic decisions might need to be taken at a national level, decisions about how agreed outcomes are delivered are often best taken locally.

17. Under the new agreement, each council is required to develop a Single Outcome Agreement based upon an agreed set of National Outcomes and Indicators. These are not concerned with specific public service provision, but on the outcomes or results those services can provide.

18. Improving the support of unpaid carers contributes to a number of the National Outcomes and indicators, which is supported by a Community Care Outcome approach designed to embed user and carer satisfaction and support at the heart of community support services.

Survey data on carers in Scotland

19. The two main sources of survey data on unpaid carers in Scotland examined in this research were the 2001 Census data and the SHS 2007/2008.

20. The Census was used to provide key information on Scotland's unpaid carers, which could benchmark the prevalence and profile of Scotland's unpaid carers.

21. The SHS provides up to date information on the characteristics and experiences of Scotland's unpaid carers. Data for this survey is collected by household and random adult. The household data is collected from the household reference person - usually the highest income householder, or their spouse/partner. The random adult data is based on the random selection of one adult in the household to take part in an interview. The most recent data available from the 2007/2008 SHS provides data from 27,238 households.

22. Specific information from these sources of data includes length of time people have been caring and the intensity of caring responsibilities. These data sources also provide a further understanding of the specific characteristics of Scotland's unpaid carers and the support services they access and use. This allows a detailed picture of unpaid caring in Scotland to be developed and understood.

Other data on carers in Scotland

23. Other statistical data is also presented in the report as potentially providing alternative insights on carers in Scotland. These include data from the Department for Work and Pensions ( DWP) on the Carer's Allowance; statutory performance indicators from Audit Scotland on the provision of short breaks; the Social Work Inspection Agency Survey of Carers; the Joint Performance Information & Assessment Framework return on Carer Assessments; and the re-designed Scottish Health Survey ( SHeS).

Estimated numbers of carers in Scotland

24. The latest estimate from the from the SHS, 2007-2008 suggests that there are approximately 657,300 unpaid carers in Scotland. Care 21 put this figure at around 1 in 8 of the population (668,200 unpaid carers). However, other estimates vary, for example the 2001 Census estimates there are around 480,000 unpaid carers in Scotland.

25. It is difficult to give a definitive figure for the number of young carers in Scotland, due to the hidden nature of this group in society. Estimates vary significantly from around 16,700 in the 2001 Census to around 100,000 by The Princess Royal Trust for Carers. The latter figure would equate to approximately 1 in 12 secondary school-aged children in Scotland.

Demographic change and its implications for health and well-being

26. Data related to projected demographic change and its implications for health and well-being is also discussed in the report. Being able to project demographic changes to the population of Scotland is an important part of many policy areas, but particularly in respect of carers' policy given the view that if the population is ageing and in greater need of care and support, this may create extra burdens for the state, social services and people's families. A number of demographic projections have been produced and published by the General Register Office for Scotland and on behalf of NHS Scotland's Information Services Division. These will have implications for the future health and well-being of the population and on the provision of unpaid care in the future as the population ages.

Key findings

27. The aim of this research project was to identify, analyse and present useful statistical information on unpaid carers in Scotland. Each of the sources consulted and presented in this report make a different contribution to telling the story of caring in Scotland. Some of the emergent themes and findings from these data sources are presented below:

Caring in Scotland

28. Caring requirements: The SHS 2007/2008 estimates that around 14% of households contain someone requiring care. This compares to 33% of households reporting that they contain someone with a long-term illness or disability.

29. The prevalence of caring in Scotland: The 2001 Census estimated that around 10% of the population were providing care to another person and around 4% of the population were providing over 20 hours per week. While around 7% of households in the SHS sample have a carer providing help or care within the home, around 10% of the adults randomly selected for the survey provide additional help or care to someone not living with them.

30. Number of carers in a household: The SHS found that 79% of carer households have only one carer, 17% have two carers and 4% have 3 or more carers, providing care within the household. Most households in Scotland (96%) which have a person requiring additional help or caring needs has only one person in need of the extra help or care.

31. Who carers care for: The majority of carers providing help or care within the home, provide care to a parent. This was closely followed by care to other relatives including spouses, children and siblings.

32. Time spent caring: In the 2001 Census, 63% of carers were undertaking less than 20 hours of care per week and 23% were undertaking more than 50 or more hours per week. In the SHS, 48% of Scottish carers providing care to other household members provide 'continuous care'. The adults randomly selected for the SHS indicate that 79% of carers providing care to people not living with them are providing less than 20 hours per week.

33. Time carers have been a carer: For those undertaking a caring role in the household, the SHS reported that over 70% of carers have been providing care for over 5 years.

34. Support services carers use: The 68% of carers providing care to people not living with them, reported that they did not access any external support. Carers who access support reported that the most common type of service utilised was practical support including transport (22% of carers).

Characteristics of Scotland's carers

35. Age: Across all the data sources it was found that as carers get older they appear to take on more caring responsibility. The 2001 census reports that 69% of carers were aged 50 or more. The SHS indicates that 56% of carers who provide care within their household and 51% of carers providing care to people not living with them are aged 50 or more. The data was limited on young carers, as the full extent of caring undertaken by young carers is unlikely to be revealed in such surveys.

36. Gender: The 2001 Census data indicated that around 11% of women were undertaking a caring role, compared to 8% of men. The prevalence of female to male carers was around 60:40. Data relating to claimants' of the Carer's Allowance in Scotland supports this finding, with more women than men claiming the allowance. This finding is further substantiated by the SHS, as 63% of women and 37% of men provide care to people not living with them. However this difference in prevalence is less apparent when unpaid care is provided by a carer to someone within their household - in this case 54% of women and 46% of men provide care.

37. Ethnicity: The available data was unable to provide sufficient information on black and minority ethnic ( BME) carers in society. Low reported numbers should not necessarily be taken as an indication of low prevalence of caring, but could be a reflection of the difficulties survey research has in adequately sampling small groups in society.

38. Health of Carers: Around 12% of carers undertaking an unpaid caring role and 18% of those undertaking more than 20 hours of unpaid care a week reported that they are in poor health. This is interesting and important in highlighting how carers may themselves suffer from the effects of illness and disability.

39. Economic Activity: Amongst economically active carers providing any unpaid care to household members, it is part-time workers (both self-employed and employed) who are most likely to be carers. These two groups, along with the unemployed, are also the groups who are most likely to provide over 20 hours care each week. For economically inactive people undertaking any unpaid care, the biggest proportion of carers are those who already have family/home caring responsibilities, followed by those who are retired.

40. Social Class: The households least likely to have a carer who cares for another household member are those households in the higher managerial and professional occupations at around 7% of households. Households with a carer are most likely to be in the lower managerial and professional occupations class (26%).

41. Scottish Index Multiple Deprivation ( SIMD): The largest proportion of households with a carer (28%) are in the 20% most deprived data zones in the SIMD. The proportion of households with a carer decreases steadily as deprivation decreases, so that households in the least deprived 20% of data zones are those with the lowest prevalence carers in Scotland (13%).

Conclusions

42. This project aimed to outline the main sources of information on carers in Scotland and present key information which can be used by policy makers, practitioners and other stakeholders working with carers in Scotland, to provide a better shared understanding of carers.

43. Each source of data consulted, analysed and discussed in this research provides different and important insights into unpaid carers in Scotland. The 2001 Census data provides a snapshot of the total population that can be used as a comparative baseline. Comparing the 2001 Census data with data from the SHS, DWP and SHeS, it has been established that:

  • a higher proportion of women provide unpaid care than men
  • carers are more likely from middle aged or older age groups.

44. Analysis of the SHS data has identified that for carers providing care to someone within their household, they are far more likely to be providing continuous care, than a carer providing care to someone not living with them. This difference in caring demands is something that can not be identified from the Census and is useful to know when considering the different needs/requirements of a carer.

45. It is generally thought that much unpaid caring is hidden particularly among BME and young carer groups. This may be due to a lack of cultural sensitivity in the services and information provided to carers. In some cases, carers may choose to remain hidden.

46. Data from large scale surveys such as the Census and SHS provide limited information on young carers and BME groups because of the relatively small sample size from these groups. In addition, these groups may have difficulties completing the survey or may not identify themselves as carers.

47. To understand the extent and nature of caring amongst such groups other qualitative research methods will need to be explored. This may go someway to countering the problems identified in this research.

48. This research, together with the National Carers' Strategy in Scotland, published in July 2010 demonstrates a willingness to assess progress towards meeting recommendations of the Care 21 Report. This will go some way to furthering the interests of carers in Scotland.