CLOSER, UNIVERSITY COLLEGE LONDON (UCL) SOCIAL RESEARCH INSTITUTE – WRITTEN EVIDENCE (ASC0069)

Authors: Dr Neil Kaye, UCL Research Fellow and Rob Davies, Head of Policy and Dialogue

Reviewers: Professor Emla Fitzsimons, Interim Director and Jon Tebbett, Project Manager

1. About us:

1.1  CLOSER[1], the home of longitudinal research, is the interdisciplinary partnership of leading social and biomedical longitudinal population studies, the UK Data Service and The British Library. Our mission is to increase the visibility, use and impact of longitudinal population studies, data and research.

1.2  Our studies[2] comprise of both national and regional longitudinal population studies from across the UK. They include the British Birth Cohort Studies, ONS Longitudinal Study, English Longitudinal Study of Ageing, Born in Bradford, Southampton Women’s Survey, Avon Longitudinal Study of Parents and Children, Generation Scotland, Understanding Society – the UK Household Longitudinal Study, and more.

1.3  CLOSER has been funded by the UKRI Economic and Social Research Council (ESRC) since 2012 and is based at the UCL Social Research Institute.

2. Our reason for submitting evidence:

2.1  CLOSER represents multiple longitudinal population studies across the UK. These national scientific assets follow the same people and households over time, often from birth, collecting a wide array of data and information about study participants, which enable researchers and policymakers to explore people’s complex lives and how changes in society affect health, community and education. By collecting data at intervals from the same people over their lives, these studies are continuously building an ever-richer data resource that captures how life in the UK changes over time and how events and exposures have long-term impacts.

2.2  Longitudinal population studies are recognised as vital sources of evidence on how early circumstances and experiences affect people’s lives from childhood to adulthood, providing insights into individual short and long-term change and the relationship between different elements of people’s complex lives that cannot be obtained from any other data sources. They allow researchers to explore how different groups vary, and how and why people’s lives change, enabling a greater understanding of the difference between causal relationships and correlation.

2.3  Several UK longitudinal population studies ask their participants questions related to care provision, which has enabled us to look at research across multiple studies to inform our evidence submission. Our submission draws on research using the following longitudinal population studies:

• Millennium Cohort Study (MCS)
• 1958 National Child Development Study (NCDS)
• Understanding Society – the UK Household Longitudinal Study
• The English Longitudinal Study of Ageing (ELSA)

2.4  A full list of research papers used to inform this evidence submission can be found in Annex 1.

3. Key messages:

The invisibility of adult social care and its consequences:

• One of the reasons that adult social care is ‘invisible’ is because data collection in social surveys to measure the provision of informal care increases the probability of under-reporting: there are differences in the interpretation of what constitutes ‘care’ across people, with the implication that some groups (e.g. women) tend to underestimate the amount of care given.

The impact of the COVID-19 pandemic on carers:

• The decline in mental health seen during lockdown was significantly greater among home-carers compared to the general population.
• Those people who care for an adult child experienced a more marked deterioration in mental health compared to home-carers looking after a spouse or child under 18.
• Young carers reported significantly higher psychological distress and lower mental wellbeing during the pandemic compared to their peers without caring responsibilities.

Better support for unpaid carers:

• Greater flexibility in employment is required for adult children who are providing informal social care to their parents to enable them to remain in work.
• Increased public investment in ‘replacement care’[3] to support carers in employment could lead to savings in public expenditure.
• More psychosocial support is needed for adolescent carers to help them return to education and catch up with their studies.
• It is important to recognise the entire caregiving journey, from its beginning to end and take a holistic approach to policies on informal care.

The future of adult social care:

• Models based on longitudinal data forecast that over the next 20 years (to 2035) adults over 65 with high dependency needs will increase by 36%.
• A greater proportion of older people will have complex social care needs and the burden on informal care will fall more heavily on older spousal carers, who will be increasingly living with disabilities and multiple health conditions.

4. Evidence and insights on adult social care from UK longitudinal population studies:

1. The invisibility of adult social care:

• Data collection on the prevalence of adult social care suffers from a measurement problem insofar as informal care provision is typically collected only by broad participation questions. This has the effect of increasing the probability of under-reporting provision, with some groups (e.g., women) tending to underestimate the amount of care given in a non-random way. [1]
• Current assessments of adult social care need used in research and policy are not easily translatable into frequency of support provision for social care practitioners. [2]

“The Care Act (2014) conceptualises needs in terms of outcomes (e.g., hygiene, toileting, education) and the impacts that not meeting those outcomes would have on an individual's daily life. Such a conceptualisation does not explicitly translate to frequency of social care support provision required” [2]

2. Future of adult social care:

• Models based on longitudinal data forecast that, over the next 20 years (to 2035) adults over 65 with high dependency needs will increase by 36%. A greater proportion of older people will have complex social care needs. [3]
• As social care needs for this section of the population increase, it is likely that there will be less support available from adult children with the increase in the retirement age. The burden of informal care will fall more heavily on older spousal carers who will be increasingly living with disabilities and multiple conditions. [3]

3. Intergenerational adult social care:

• Intergenerational exchange of care between parents and adult children has been shown to vary significantly depending both on the type of care required and on past relationships and past exchanges of support within families (e.g. from grandparents to grandchildren). [4]
• Broadly speaking, parents who support their children beyond their adolescence might expect to receive more support with instrumental tasks as they grow older; nevertheless, support with other types of tasks might be dependent on a range of other factors, including most importantly parental need. [4]
• For adult children, who are providing informal social care to their parents, greater flexibility in employment is required to enable them to remain in work. Whilst this disproportionately relates to women, research suggests that men too tend to reduce their working hours or stop working when they are involved in intense care-giving or particular types of care. [5] (see section 6, below)

4. The impact of the COVID-19 pandemic:

• The decline in mental health seen during lockdown was significantly greater amongst home-carers compared to the general population, and it stayed poorer through to July 2020 even as the general population’s mental health appears to have recovered slightly [6]
• Those caring for an adult child experienced a more marked deterioration in mental health compared to home-carers looking after a spouse or child under 18 [6]

“Our results clearly demonstrate that the mental health of home-carers, which was already poor pre-pandemic, has been disproportionately affected by COVID-19 and associated mitigation measures.” [6]

• Analysis of adolescents using the MCS has shown that young carers reported significantly higher psychological distress and lower mental wellbeing during the pandemic, compared to their peers without caring responsibilities [7]
• More psychosocial support is needed for adolescent carers to help them return to education and catch up with their studies [7]

“Worse outcomes were associated with poor sleep quality, attempted suicide at baseline [at age 17, just pre-pandemic], low social support, and a strong feeling of loneliness during the pandemic. These factors were significantly more likely to be observed among adolescent carers than noncarers.” [7]

5. Local authority/public investment in adult social care:

• Contractions in public spending make many older people experience the double plight of having social care needs and not being able to meet them in full [8]
• Research using ELSA has found that a 29% fall in local authority expenditure on community-based social care for older people would lead to an increase of between 6.1 and 9.7% in older people with unmet needs [8]
• Whilst recent longitudinal data have highlighted the negative consequences for employment of unpaid care, local authorities are not in contact with large numbers of carers whose employment is at risk [9]

“Although local authorities in England have a duty to support unpaid carers whose employment is at risk, there is little evidence that they do so to any great extent” [9]

• Research has indicated a clear relationship between the availability of local primary care services and satisfaction with health services amongst older people. However, the availability of care services is unable to fully overcome the complex social care needs associated with living among the most deprived communities [10]
• Recent research has argued that greater public investment in ‘replacement care’ to support carers in employment could lead to savings in public expenditure and would therefore represent good value for money for the Government. However, the amount of money provided to local authorities appears inadequate compared to the likely cost of ‘replacement care’ required. [11]

“The finding that the costs of ‘replacement care’ for working carers are lower than the costs of carers leaving employment suggests that it would be cost-effective for the government to provide ‘replacement care’ services to working carers. … [T]he savings would amount to £1,233 a year per carer.” [11] 

6. Effect of informal care provision on employment:

• Research combining quantitative and qualitative methods using the NCDS has highlighted that around 1 in 7 working carers reduce their economic activity in midlife – around the age of 50-55 – and that among carers, being female and reporting poor health increases the likelihood of reducing one’s employment [12]
• Recent longitudinal data have shown that even 10 hours provision of unpaid care a week by people in midlife has negative consequences for employment [9]
• The gender differences in unpaid informal care have been highlighted in several studies [9][10][13], e.g., informal care from adult daughters has been found to substitute for a lack of sufficient formal care (whilst the same is not true for sons) [13]
• However, the negative impact of caring on labour market participation is evident for both men and women:

“…gender differences in the effects of unpaid care provision on employment are likely to be attributable to various factors. On the one hand, men who provide care for long hours may be particularly likely to leave the labour market because men are more likely to work full-time than women, and unpaid care provision is more compatible with part-time employment. On the other hand, midlife women who start providing care for long hours may [have been] particularly likely to take early retirement [before the equalization of the state retirement age].” [9]

• Analysis of ELSA data has found that providing care for more personal tasks, and for a higher number of hours, are associated with exiting employment for both men and women carers [5]

7. Carers’ mental health and support:

• As noted above, the effect of caring on carers’ mental health has been exacerbated by the circumstances around the COVID-19 pandemic [6][7]
• Research has also linked caregiving responsibilities with lower levels of baseline and follow-up wellbeing measures. In particular, levels of quality of life decline significantly over time, reflecting the ongoing deterioration to one’s sense of autonomy, control over their everyday lives, and general outlook on life [14][15]
• However, this deterioration in quality of life is specifically associated with entry into spousal/child caregiving [14][16], with no such association found for those caring for someone other than a spouse or child – in fact, amongst this latter group, life satisfaction increased, and feelings of depression reduced [14]
• This research also found that undertaking caring can lead to a positive increase in wellbeing as long as carers felt appreciated, with a sense of reciprocity key to maintaining positive experiences of caregiving responsibilities [16]

“…while caring was generally not significantly associated with wellbeing… [w]hen carers in this study were divided between those who felt appreciated for their caring and those who did not, however, caring became significantly associated with each of the wellbeing outcomes including life satisfaction, depression and quality of life.” [16]

• Carers who participate in social activities, such as sport, community or cultural groups, report better mental health and subjective wellbeing, however barriers to participation include lack of time, energy and finance [15]
• Amongst older people it is also important to support those with diverse carer ‘trajectories’, including those discontinuing in the role (either through a change in care setting, needs or through widowhood). It is important that older carers are supported to construct a life post-caring [17]

“Importantly this paper has shown the importance of recognising the entire caregiving journey, from its beginning to end, and advocates the importance of taking a holistic approach to policies on informal care.” [17]

• Research has highlighted a link between physical health as a determinant of receipt of support for men; whilst for women mental health status is a strong determinant of receipt. Gender based differences in need raises questions about which sources of support are most appropriate for different needs and for how social care provision should be organised in the future. [18]

“Policy concerns about the supply of social care increasingly refer to the ‘mix’ between informal, formal state and formal paid-for sources of support, and the need to strike a balance between public and private resources in the context of an ageing population.” [18]

27 May 2022

Annex 1: Research papers used to inform this evidence submission

[1] Rutherford, A. C., & Bu, F. (2018). Issues with the measurement of informal care in social surveys: evidence from the English Longitudinal Study of Ageing. Ageing & Society, 38(12), 2541-2559.

[2] Willis, R., Channon, A. A., Viana, J., LaValle, M. H., & Hutchinson, A. (2019). Resurrecting the interval of need concept to improve dialogue between researchers, policymakers, and social care practitioners. Health & Social Care in the Community, 27(5), 1271-1282.

[3] Kingston, A., Comas-Herrera, A., & Jagger, C. (2018). Forecasting the care needs of the older population in England over the next 20 years: estimates from the Population Ageing and Care Simulation (PACSim) modelling study. The Lancet Public Health, 3(9), e447-e455.

[4] Evandrou, M., Falkingham, J., Gomez-Leon, M., & Vlachantoni, A. (2018). Intergenerational flows of support between parents and adult children in Britain. Ageing & Society, 38(2), 321-351.

[5] Gomez-Leon, M., Evandrou, M., Falkingham, J., & Vlachantoni, A. (2019). The dynamics of social care and employment in mid-life. Ageing & Society, 39(2), 381-408.

[6] Whitley, E., Reeve, K., & Benzeval, M. (2021). Tracking the mental health of home-carers during the first COVID-19 national lockdown: evidence from a nationally representative UK survey. Psychological medicine, 1-10.

[7] Nakanishi, M., Richards, M., Stanyon, D., Yamasaki, S., Endo, K., Sakai, M., ... & Nishida, A. (2022). Adolescent Carers' Psychological Symptoms and Mental Well-being During the COVID-19 Pandemic: Longitudinal Study Using Data from the UK Millennium Cohort Study. Journal of Adolescent Health, 70(6), 877-884.

[8] Iparraguirre, J. L. (2020a). Reductions in local government spending on community-based social care and unmet social care needs of older people in England. The Journal of the Economics of Ageing, 17, 100126.

[9] King, D., & Pickard, L. (2013). When is a carer’s employment at risk? Longitudinal analysis of unpaid care and employment in midlife in England. Health & Social Care in the Community, 21(3), 303-314.

[10] Wu, Y. T., Prina, M., & Matthews, F. (2022). The availability of local primary care services, satisfaction with health services and self-rated health in older English adults: A population-based study. Preventive Medicine Reports, 27, 101786.

[11] Pickard, L. (2019). Good value for money? Public investment in ‘replacement care’ for working carers in England. Social Policy and Society, 18(3), 365-382.

[12] Vlachantoni, A., Wang, N., Feng, Z., & Falkingham, J. (2021). Informal Care Provision and the Reduction of Economic Activity Among Mid-Life Carers in Great Britain–A Mixed-Methods Approach. Social Policy and Society, 1-18.

[13] Iparraguirre, J. (2020b). Household composition and the dynamics of community-based social care in England. Ageing & Society, 40(8), 1631-1646.

[14] Rafnsson, S. B., Shankar, A., & Steptoe, A. (2017). Informal caregiving transitions, subjective well-being and depressed mood: Findings from the English Longitudinal Study of Ageing. Aging & Mental Health, 21(1), 104-112.

[15] Vlachantoni, A., Feng, Z., Wang, N., & Evandrou, M. (2020). Social participation and health outcomes among caregivers and non-caregivers in Great Britain. Journal of Applied Gerontology, 39(12), 1313-1322.

[16] McMunn, A., Nazroo, J., Wahrendorf, M., Breeze, E., & Zaninotto, P. (2009). Participation in socially-productive activities, reciprocity and wellbeing in later life: baseline results in England. Ageing & Society, 29(5), 765-782.

[17] Palmer, M. F. (2022). Associations of discontinuation of care: A longitudinal analysis of the English Longitudinal Study of Ageing. Health & Social Care in the Community, 30(2), e445-e460.

[18] Vlachantoni, A., Shaw, R. J., Evandrou, M., & Falkingham, J. (2015). The determinants of receiving social care in later life in England. Ageing & Society, 35(2), 321-345.