Research and analysis

Informal carers and employment: summary report of a systematic review

Published 12 September 2019

© Crown copyright 2019

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Introduction

Background

DWP commissioned a systematic review to enhance understanding of the employment-level consequences of informal caring through a robust evaluation of the available published research evidence. This paper summarises the key findings.

The impact of caregiving on the ability of the UK working age population to participate in the labour market poses a growing economic and social policy challenge. Carers who exit employment are unlikely to return after their caregiving period ends.[footnote 1] The challenge for the UK has been noted, with one study indicating that more UK carers exit employment than elsewhere in Europe.[footnote 2]

A report from Carers UK found that carers aged in their 40s and 50s are more likely than carers of other ages to exit the labour market,[footnote 3] based on Census 2011 data. Despite the apparent association between caring and reduced labour market attachment, the causal relationships between caring and the intensity and duration of work, remains unclear. In policy terms, an assessment of the evidence related to the relationships between care and work can inform future approaches to help carers stay active in the labour market. A clear understanding of typical trigger points where carer’s employment is likely to be at risk, can help to inform the content and targeting of any future interventions.

Summary of Findings

Risks to employment exit

  • the age at which a person is most at risk of leaving their employment in order to care is between 50 and 64. Factors such as proximity to State Pension Age, and the likelihood of being ‘sandwich carers’ (looking after dependent children as well as older parents) are believed to contribute to employment exit.[footnote 4]
  • access to formal care can be a trigger for carers leaving employment. Lack of flexibility, and the inability to find formal care are also reported as issues surrounding obtaining formal care provision.[footnote 5]
  • key transition points across the carers ’caring journey’ can also cause friction with employment. The most obvious transition point is the transition into becoming a carer. Changing circumstances can increase the risk of employment exit.[footnote 6]

Strategies for Employment Retention

  • the most commonly cited workplace need identified by carers in the literature, is access to flexible working arrangements. In cases where workplace flexibility is not possible some carers will reduce their working hours[footnote 7], or downgrade to a less senior role.[footnote 8]
  • having a carer friendly employer was recognised as significant for successful employment retention among carers. Informal arrangements, such as employers allowing carers extra leave days to deal with emergencies were appreciated by carers.[footnote 9] More formalised policies such as the use of a carers register enabling carers to access emergency leave and leave to attend medical appointments as well as a carers passport (a document drawn up between an employee and manager outlining the needs of employees with caring responsibilities)10 were popular, though not common; the literature identified only one such instance of an organisation implementing a carers passport.

Barriers to Employment Re-Engagement

  • evidence shows that the longer a carer has been disengaged from the labour market, the harder it is to re-engage.[footnote 11] Those over 50 are more likely to say they prefer to be out of work whilst caring, and do not consider themselves to be “unemployed”.[footnote 12]
  • carers of working age in the general population are more likely to be in work than Carer’s Allowance claimants.[footnote 13]

Research Objectives

The aim of the systematic review was to enhance understanding of the employment-level consequences of informal caring by answering three questions:

1. What causes carers to experience a change in labour market status from employed to either unemployed or economically inactive as a result of caring responsibilities? 2. What strategies do working carers utilize to enable them to remain in employment? 3. What are the barriers to non-working carers’ re-engagement with employment?

Methodology

A systematic review protocol was agreed by the researcher and DWP. Thirty-eight relevant documents adhering to strict selection criteria (annex 1) were analysed to form the review.

1 Risks to Employment Exit

Difficulties Obtaining Formal Care

Some carers have difficulty ascertaining what services are available, how to access them and how to address eligibility concerns.[footnote 14] Others report difficulty locating formal care that is adequate for the care-recipients requirements, or find formal care services they have been offered unreliable[footnote 15] making it harder to fit around potential working hours.

Co-Residence

Carers who live with the person they care for are significantly more likely to give up work than those who live apart from their care recipient.[footnote 16] The literature shows that co-resident carers are more likely to exit employment.[footnote 17]

Inflexible Employer

A common trigger to employment exit is the inability to negotiate flexible working. However, many carers noted that their employer did not have formal policies to support them,[footnote 18] requiring the carers to rely on negotiating informal arrangements that were dependant on the goodwill of their employer.

Weak Attachment to the Labour Market

Those who care for more than 10 hours per week are less likely to have a degree.[footnote 19] One study reports almost half of respondents to a survey of 500 Carer’s Allowance recipients had no formal qualifications whatsoever.[footnote 20]

Key Transition Points

A key transition point is an event resulting in “acute change”, for example a disabled child moving into adult social care[footnote 21] or an adult moving into older people’s services. The most prominent transition points mentioned in the literature are the transitions into caring, and out of caregiving due to death. Carers’ needs are likely to change at this point in ways that may impact upon their employment. Most carers will feel vulnerable, and may be at their most isolated due to services that they had relied upon for their support, such as nurses, are withdrawn after the care recipient has died.[footnote 22] They may also experience a decline in their own health due to not feeling able to look after themselves during their period of caring[footnote 23] which could cause them to give up working.[footnote 24]

Workplace Hostility

Workplace hostility has been identified as coming from both colleagues and managers. Carers felt colleagues and managers didn’t understand their caring role, felt they had no support from their employer, and some were not comfortable discussing their caring role at work. Others report their managers had withheld progression opportunities and some reported that they were made to feel guilty for requiring support at work because of their caring role.[footnote 25]

Occupation Type

Type of occupation matters. Higher skilled managerial or professional roles are often reported as being more accommodating of flexible working, as well as offering better salary and conditions providing an incentive to stay in work. For those working in lower skilled or routine roles, caring has a significantly higher impact on their employment.[footnote 26]

Care Intensity

Carer employment rates decrease as the hours of caring increase.[footnote 27] Many studies place an intensity threshold at 20 hours,[footnote 28] beyond which care intensity poses a significant risk to employment. A majority those who provide over 20 hours a week reporting they have low, or no, qualifications,[footnote 29] creating another barrier to working.

Hours of caregiving per week increase with the age of the care giver,[footnote 30] putting older carers more at risk of leaving their job. Similarly, co-resident carers provide significantly more hours of care than non-resident carers,[footnote 31] making them more likely to leave work to care. Carers are also significantly less likely to remain employed if they provide physical or personal care, or if they are the ones to manage other care support arrangements.[footnote 32]

Carer Health

Carers with health problems are more likely to exit employment. Carers are also more likely to suffer ill health than non-carers[footnote 33], including mental ill health. Those providing intensive care are between two and three times more likely to report ill health[footnote 34] and therefore are at higher risk of exiting employment.

Difficulties Concentrating

Those carers who leave work, were more likely to have experienced caring related interruptions whilst at work.[footnote 35] Carers have identified the need for them to plan or arrange alternative care arrangements whilst at work, or being distracted by worrying about their care recipient.[footnote 36] Many carers who have remained in employment say their work is negatively impacted through tiredness, and believe their quality of output is impeded.[footnote 37]

Age

Those aged 50 and over who provide 10 or more hours of care more likely to leave employment altogether rather than change their working pattern.[footnote 38] Carers over 50 are also more likely to be ‘sandwich caring’ (looking after both older relatives and parenting younger children)[footnote 39], adding another level of responsibility.

Gender

Women are more likely exit employment than men.[footnote 40] One study posited that this was due to women having a greater fear of the stigma and negative career repercussions from disclosing care issues.[footnote 41] Overall, women provide more hours of care than men, and among carers who are in paid work, women are more likely than men to work part time.[footnote 42] When looking at the types of care duties performed, one paper suggested women manage the more physically and psychologically damaging activities, such as personal care and pain management.[footnote 43]

2 Employment Retention Strategies

Formal Care

Formal care can be a significant strategy in facilitating carer employment. Evidence shows that a carer is significantly more likely to remain in employment if the care recipient is in receipt of at least one formal care service.[footnote 44]

Flexible Working

Flexible working is the most prolific employment retention strategy identified in the literature. Many carers in employment chose their work role for its flexibility.[footnote 45] Some opt for self-employment,[footnote 46] or working unsocial hours[footnote 47] for the inherently flexible nature of these roles.

Statutory Care Assessment

Under the Care Act 2014, local authorities must carry out an assessment of anyone who appears to require care and support, regardless of their likely eligibility for state-funded care. The assessment should focus on the person’s needs, and include their carer or someone they nominate. Evidence indicates that a timely and person-centred assessment, can be a support gateway to enable carers to access services.[footnote 48] It was a common finding for carers to report that assessors did not discuss work, despite the centrality of working and caring to carer assessment guidelines.[footnote 49]

Technology

Alarms and sensors can help by alerting services or carers if the care recipient suffers a fall. Carers state alarms help give them peace of mind while at work,[footnote 50] allowing them to remain in their job.

Carer Friendly Employer

Carers appreciate informal gestures such as their employer turning a blind eye to absences,[footnote 51] and putting in place employee assistance and staff welfare programmes. One large employer had created a carers register[footnote 52] where staff identified as carers were entitled to emergency leave, as well as special leave to attend appointments, which proved popular. Similarly, some organisations have adopted the use of a carers passport[footnote 53] – a document outlining the needs of employees with caring responsibilities. Carers also appreciated creation of staff carer networks that allowed them to network and receive support from other carers.[footnote 54]

Change Working Pattern

Carers often reported choosing to make alterations to their working pattern when they have become overwhelmed with the demands of juggling work and their caring role.[footnote 55] This can include reducing their working hours, which was particularly popular with those who have low skilled and low income jobs.[footnote 56] Carers also report downgrading to a less senior role in these circumstances, or turning down a promotion, because of their informal caring role.[footnote 57]

Among carers who are in paid work, women are more likely than men to be working part time - often in low paid, low grade jobs.[footnote 58]

Family Support

Receiving support from family and friends can have a positive effect on employment rates of informal carers.[footnote 59]

3 Barriers to Employment - Engagement Engagement Engagement

No time/energy to search for work

This is particularly true of those with more intense caring roles.[footnote 60]

Unable to Find Flexible Employment

Many carers are restricted in the number of hours they are able to work,[footnote 61] or complex logistical requirements are created by the demands of their caring role. The literature has also identified that flexible working is less readily available for those looking for work than those who are already employed,[footnote 62] making it harder for unemployed carers to find flexible arrangements.

Difficulties Obtaining Formal Care

Problems with flexibility of formal care have been previously identified, meaning carers can have trouble arranging alternative care arrangements during their potential working hours.[footnote 63]

Carer Beliefs

A common theme emerging from the literature was carers tend to view caregiving as a full time job, and therefore do not consider themselves unemployed if they choose not to be in work.[footnote 64] Also identified were negative perceptions around accepting services, with some reporting they saw accepting support as failure, or an inability to cope.[footnote 65]

Benefits

A survey of Carer’s Allowance claimants linked with Census 2011 data found that carers of working age in the general population are more likely to be in work than Carer’s Allowance claimants.[footnote 66]

Age

Those who are 50 or over are more likely to say they prefer to be out of work whilst caring, and are also less likely to return to the labour market if the period of caring terminates.[footnote 67] This age group also cite problems with finding an age appropriate job (for example, a non-physical role), and issues dealing with age discrimination[footnote 68] as preventing them from engaging with the labour market.

Outdated Skills

Some carers are disengaged from the labour market for so long that their skills become out of date.[footnote 69] Evidence shows that the longer someone is out of work, the harder it is to re-engage, due to lack of experience (and job searching experience) and a disconnection from valuable networks.[footnote 70]

Health

Emerging health problems provide a significant barrier to re-engagement with employment, particularly after long periods spent caregiving.[footnote 71]

Conclusions

Several factors arise from the analysis of the evidence related to care and work. The age of the care giver appears to be a significant factor in carer’s employment status. Being between 40 and 65 puts a carer at significant risk of exiting employment, and being over 50 has been found to be a barrier to re-engaging with employment if the carer has previously left their job.

Weak attachment to the labour market through having fewer formal qualifications also remains a risk to carers leaving work. Transition points such as becoming a carer, as well as other key transition points in the caring journey, can trigger carers to leave work in order to care. The review highlights that the process of obtaining formal care can be difficult to negotiate. Having done so, some carers find the provision they have obtained lacks flexibility, and doesn’t meet the needs of the care-recipient, leaving them at further risk of leaving work to care.

Achieving good flexible working arrangements is the most commonly cited factor in the literature to help working carers stay in work. If carers are unable to access flexible working, many are likely to choose to reduce their working hours, or leave their job altogether. Having a carer friendly employer was also seen as important by carers. Using a carers register and carers passport was also popular in some organisations, meaning carers were entitled to extra emergency leave, and leave to attend medical appointments.

Re-engaging with employment can be difficult for carers who have previously left work to care. Evidence in the review has shown the longer a carer has been disengaged from the labour market, the harder it is for them to re-engage with employment. This could be due to outdated skills, their own declining health, or being unable to find appropriate formal care for the needs of their care-recipient. Additionally, the literature has identified that carers of working age in the general population are more likely to be in work than Carer’s Allowance claimants.

Annex 1: Methodology

A systematic review protocol was agreed by the researcher and DWP. Thirty-eight relevant documents adhering to strict selection criteria were analysed to form the review.

Inclusion Criteria

  • the review is restricted to data concerning the UK population.
  • the review adopts the General Household Survey (GHS) definition of ‘carers’ as those people who “identify themselves as having extra responsibilities of looking after someone who has a long-term physical or mental ill health or disability, or problem related to old age.” This definition excludes “those caring as volunteers for a charity or organisation, those caring for someone in an institution, those providing financial support only and those caring for someone with a temporary illness or disability).”
  • documents must discuss carers’ change in labour market status from employed to either unemployed or economically inactive.
  • documents must discuss carers’ change in labour market status from employed to either unemployed or economically inactive.
  • if several versions of a document were available, only the most recent version is used.
  • only English language sources are included.
  • the review is limited to sources published from 1st May 2008 to 1st May 2018. This ensured the relevance of the review, enabling it to focus upon contemporary trends. A preliminary scoping exercise suggested that this ten-year timeframe would produce enough data to be comprehensive whilst also manageable with regard to the project timeline and available resources.
  • demographics included both women and men.
  • to address the review questions as a set, the review framed labour market participation as a binary measure reflecting a person’s status as being either “in” or “out” of the labour market.

Exclusion Criteria

  • data examining non-UK Labour markets.
  • non-English language sources.
  • data published outside the 2008-2018 parameter.
  • data covering non-adult carers (i.e. those under age 16 years).

Due to the heterogeneous nature of the data, the review adopted a ‘meta-aggregation’ synthesis. This approach used original findings extracted from research studies to generate a synthesis representing the collective meaning of all relevant data on the review topic. The review complimented meta-aggregation with an appraisal screening to assess the dependability of the synthesis.

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  11. Fry, G., Singleton, B., Yeandle, S., & Buckner, L. (2011). Developing a clearer understanding of the Carer’s Allowance claimant group. Department for Work and Pensions Research Report 739. ↩

  12. Fry, G., Singleton, B., Yeandle, S., & Buckner, L. (2011). Developing a clearer understanding of the Carer’s Allowance claimant group. Department for Work and Pensions Research Report 739. ↩

  13. Brimblecombe, N., Pickard, L., King, D., & Knapp, M. (2018). Barriers to receipt of social care services for working carers and the people they care for in times of austerity. Journal of Social Policy, 47(2), 215-233. ↩

  14. Arksey, H., & Morée, M. (2008). Supporting working carers: do policies in England and The Netherlands reflect ‘doulia rights’?. Health & social care in the community, 16(6), 649-657. ↩

  15. Brimbleombe, N., Pickard, L., King, D., & Knapp, M. (2018). Barriers to receipt of social care services for working carers and the people they care for in times of austerity. Journal of Social Policy, 47(2), 215-233. ↩

  16. Fry, G., Singleton, B., Yeandle, S., & Buckner, L. (2011). Developing a clearer understanding of the Carer’s Allowance claimant group. Department for Work and Pensions Research Report 739. ↩

  17. HM Government (2010). See Recognised, valued and supported: next steps for the Carers Strategy ↩

  18. Michaud, P. C., Heitmueller, A., & Nazarov, Z. (2010). A dynamic analysis of informal care and employment in England. Labour Economics, 17(3), 455-465. ↩

  19. Fry, G., Singleton, B., Yeandle, S., & Buckner, L. (2011). Developing a clearer understanding of the Carer’s Allowance claimant group. Department for Work and Pensions Research Report 739. ↩

  20. See Association of Directors of Adult Social Services, Carers UK, Employers for Carers (2011) Carers and Employment – Making a Difference, Realising Potential ↩

  21. See Marie Curie (2015) The Hidden Costs of Caring ↩

  22. See Marie Curie (2015) The Hidden Costs of Caring ↩

  23. See Employment Task Force (2008) New Deal For Carers: Employment Task Force ↩

  24. Glendinning, C., Tjadens, F., Arksey, H., Morée, M., Moran, N., & Nies, H. (2009). Care provision within families and its socio-economic impact on care providers. Heslington, York: Social Policy Research Unit, University of York. ↩

  25. See Carers UK (2014) Supporting employees who are caring for someone with dementia ↩

  26. Aldridge. H and Hughes. C (2016) Informal carers & poverty in the UK: An analysis of the Family Resources Survey. London: NPI. ↩

  27. Yeandle, S., & Buckner, L. (2017). Older Workers and Care-Giving in England: the Policy Context for Older Workers’ Employment Patterns. Journal of cross-cultural gerontology, 32(3), 303-321. ↩

  28. Aldridge. H and Hughes. C (2016) Informal carers & poverty in the UK: An analysis of the Family Resources Survey. London: NPI. ↩

  29. Muller, C., & Volkov, O. (2009). Older women: work and caregiving in conflict? A study of four countries. Social work in health care, 48(7), 655-695. ↩

  30. Michaud, P. C., Heitmueller, A., & Nazarov, Z. (2010). A dynamic analysis of informal care and employment in England. Labour Economics, 17(3), 455-465. ↩

  31. Milne, A., Brigden, C., Palmer, A., & Konta, E. (2013). The intersection of employment and care: evidence from a UK case study. European Journal of Social Work, 16(5), 651-670. ↩

  32. See Employment Task Force (2008) New Deal For Carers: Employment Task Force ↩

  33. Milne, A., Brigden, C., Palmer, A., & Konta, E. (2013). The intersection of employment and care: evidence from a UK case study. European Journal of Social Work, 16(5), 651-670. ↩

  34. Brimbleombe, N., Pickard, L., King, D., & Knapp, M. (2018). Barriers to receipt of social care services for working carers and the people they care for in times of austerity. Journal of Social Policy, 47(2), 215-233. ↩

  35. Calvano, L. (2015). Eldercare: The new frontier of work–family balance. The Psychologist, 28, 202. ↩

  36. Hamblin. K and Hoff. A (2012) Carers@Work: Interviews With Working Carers: Summary Report. Oxford Institute of Public Aging. ↩

  37. Carers UK, in collaboration with Age UK, Carers Trust, Independent Age, Macmillan Cancer Support, Motor Neurone Disease Association and MS Society (2016) Building Carer Friendly Communities: Research report for Carers Week 2016. London: Carers UK. ↩

  38. Doebler, S., Ryan, A., Shortall, S., & Maguire, A. (2017). Informal care-giving and mental ill-health – differential relationships by workload, gender, age and area-remoteness in a UK region. Health & social care in the community, 25(3), 987-999. ↩

  39. Doebler, S., Ryan, A., Shortall, S., & Maguire, A. (2017). Informal care-giving and mental ill-health – differential relationships by workload, gender, age and area-remoteness in a UK region. Health & social care in the community, 25(3), 987-999. ↩

  40. Milligan, C., & Morbey, H. (2016). [Care, coping and identity: Older men’s experiences of spousal care-giving. Journal of aging studies, 38, 105-114. ↩

  41. See Employment Task Force (2008). New deal for carers ↩

  42. Doebler, S., Ryan, A., Shortall, S., Maguire, A. (2016). Informal caregiving and mental health – differential relationships by workload, gender, age and are-remoteness in a UK region. Health & Social Care in the Community, 25(3) doi 10.1111/hsc.12395 ↩

  43. Carers UK, in collaboration with Age UK, Carers Trust, Independent Age, Macmillan Cancer Support, Motor Neurone Disease Association and MS Society (2016) Building Carer Friendly Communities: Research report for Carers Week 2016. London: Carers UK. ↩

  44. See Alexander, C (2014) Time to be Heard: A Call for Recognition and Support for Young Adult Carers ↩

  45. See Ewing, G., Grande, G. (2013). Development of a Carer Support Needs Assessment Tool (CSNAT) intervention ↩

  46. Arksey, H., & Morée, M. (2008). Supporting working carers: do policies in England and The Netherlands reflect ‘doulia rights’?. Health & social care in the community, 16(6), 649-657. ↩

  47. See Marie Curie (2015) The Hidden Costs of Caring ↩

  48. Victor, E. (2009). A systematic review of interventions for carers in the UK: outcomes and explanatory evidence. London, UK: Princess Royal Trust for Carers. ↩

  49. See Association of Directors of Adult Social Services, Carers UK, Employers for Carers (2011) Carers and Employment – Making a Difference, Realising Potential ↩

  50. Arksey, H., & Morée, M. (2008). Supporting working carers: do policies in England and The Netherlands reflect ‘doulia rights’?. Health & social care in the community, 16(6), 649-657. ↩

  51. Hamblin. K and Hoff. A (2012) Carers@Work: Interviews With Working Carers: Summary Report. Oxford Institute of Public Aging. ↩

  52. Hamblin. K and Hoff. A (2012) Carers@Work: Interviews With Working Carers: Summary Report. Oxford Institute of Public Aging. ↩

  53. See Association of Directors of Adult Social Services, Carers UK, Employers for Carers (2011) Carers and Employment – Making a Difference, Realising Potential ↩

  54. See Association of Directors of Adult Social Services, Carers UK, Employers for Carers (2011) Carers and Employment – Making a Difference, Realising Potential ↩

  55. Calvano, L. (2015). Eldercare: The new frontier of work–family balance. The Psychologist, 28, 202. ↩

  56. See Carers UK (2017) State of Caring 2017 ↩

  57. Employment Task Force (2008) New Deal For Carers: Employment Task Force. ↩

  58. Milne, A., Brigden, C., Palmer, A., & Konta, E. (2013). The intersection of employment and care: evidence from a UK case study. European Journal of Social Work, 16(5), 651-670. ↩

  59. Fry, G., Singleton, B., Yeandle, S., & Buckner, L. (2011). Developing a clearer understanding of the Carer’s Allowance claimant group. Department for Work and Pensions Research Report 739. ↩

  60. See Victor, E. (2009). A systematic review of interventions for carers in the UK: outcomes and explanatory evidence. Princess Royal Trust for Carers ↩

  61. See HM Government (2010). Recognised, valued and supported: next steps for the Carers Strategy ↩

  62. Brimblecombe, N., Pickard, L., King, D., & Knapp, M. (2018). Barriers to receipt of social care services for working carers and the people they care for in times of austerity. Journal of Social Policy, 47(2), 215-233. ↩

  63. Fry, G., Singleton, B., Yeandle, S., & Buckner, L. (2011). Developing a clearer understanding of the Carer’s Allowance claimant group. Department for Work and Pensions Research Report 739. ↩

  64. Milligan, C., & Morbey, H. (2016). Care, coping and identity: Older men’s experiences of spousal care-giving. Journal of aging studies, 38, 105-114. ↩

  65. Fry, G., Singleton, B., Yeandle, S., & Buckner, L. (2011). Developing a clearer understanding of the Carer’s Allowance claimant group. Department for Work and Pensions Research Report 739. ↩

  66. Fry, G., Singleton, B., Yeandle, S., & Buckner, L. (2011). Developing a clearer understanding of the Carer’s Allowance claimant group. Department for Work and Pensions Research Report 739. ↩

  67. Riedel, M., & Kraus, M. (2016). Differences and similarities in monetary benefits for informal care in old and new EU member states. International Journal of Social Welfare, 25(1), 7-17. ↩

  68. see Employment Task Force (2008) New Deal For Carers: Employment Task Force ↩

  69. Fry, G., Singleton, B., Yeandle, S., & Buckner, L. (2011). Developing a clearer understanding of the Carer’s Allowance claimant group. Department for Work and Pensions Research Report 739. ↩

  70. Muller, C., & Volkov, O. (2009). Older women: work and caregiving in conflict? A study of four countries. Social work in health care, 48(7), 655-695. ↩

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