Young carers' experiences of services and support: What is helpful and how can support be improved?

Globally, many children and young people provide support to family members who have poor physical or mental health, are disabled, or misuse drugs and alcohol. These young carers are at higher risk of poorer education, employment, health, and social participation outcomes compared to their peers without caring responsibilities. In the UK, awareness of the challenges faced by young carers, and a framework of their legal rights, are relatively well-developed. However, it is unclear how support can most effectively be provided. Taking a qualitative approach we explored experiences and views of young carers (aged 9-25), conducting focus groups or interviews with 133 young carers and 17 parent care recipients. We explored what aspects of services and support are seen as helpful, valued, and acceptable to young people, and what could be improved. A reflexive, thematic analysis was conducted. Valued support came from: young carers groups (including peer support), school-based and mental health support, and support for the care recipient. Helpful aspects of support included someone who listens and understands, and can be trusted not to break confidentiality; involving the young person in information, decision-making and planning (sometimes including regarding the care recipient); and finding and linking to other services. There was a difficult balance for practitioners between being perceived as proactive, persistent or intrusive when offering support to a young carer, but it was important to allow opportunities for young carers, and those they care for, to change their minds about when and whether to access support. Many interactions were perceived as unhelpful or threatening to the family, and there was often not enough of the type of support that was valued. Sharing of positive experiences can be beneficial for both people seeking support and those delivering it; key messages on what is helpful from the perspective of young carers can help support and shape practice approaches.

Projected costs of informal care for older people in England.

BACKGROUND: Health economics research and economic evaluation have increasingly taken a societal perspective, accounting for the economic impacts of informal care. Projected economic costs of informal care help researchers and policymakers understand better the long-term consequences of policy reforms and health interventions. This study makes projections of the economic costs of informal care for older people in England. METHODS: Data come from two national surveys: the English Longitudinal Study of Ageing (ELSA, N = 35,425) and the Health Survey for England (N = 17,292). We combine a Markov model with a macrosimulation model to make the projections. We explore a range of assumptions about future demographic and epidemiological trends to capture model uncertainty and take a Bayesian approach to capture parameter uncertainty. RESULTS: We estimate that the economic costs of informal care were £54.2 billion in 2019, three times larger than the expenditure on formal long-term care. Those costs are projected to rise by 87% by 2039, faster than public expenditure but slower than private expenditure on formal long-term care. These results are sensitive to assumptions about future life expectancy, fertility rates, and progression of disabilities in the population. CONCLUSIONS: Prevention schemes aiming to promote healthy aging and independence will be important to alleviate the costs of informal care. The government should strengthen support for informal caregivers and care recipients to ensure the adequacy of care, protect the well-being of caregivers, and prevent the costs of informal care from spilling over to other sectors of the economy.

Effects of mental health status during adolescence on primary care costs in adulthood across three British cohorts.

PURPOSE: This study examines the association between mental health problems in adolescence and general practice (GP) costs during adulthood up to age 50 in the UK. METHODS: We conducted secondary analyses of three British birth cohorts (individuals born in single weeks in 1946, 1958 and 1970). Data for the three cohorts were analysed separately. All respondents who participated in the cohort studies were included. Adolescent mental health status was assessed in each cohort using the Rutter scale (or, for one cohort, a forerunner of that scale) completed in interviews with parents and teachers when cohort members were aged around 16. Presence and severity of conduct and emotional problems were modelled as independent variables in two-part regression models in which the dependent variable was costs of GP services from data collection sweeps up to mid-adulthood. All analyses were adjusted for covariates (cognitive ability, mother's education, housing tenure, father's social class and childhood physical disability). RESULTS: Adolescent conduct and emotional problems, particularly when coexisting, were associated with relatively high GP costs in adulthood up to age 50. Associations were generally stronger in females than males. CONCLUSION: Associations between adolescent mental health problems and annual GP cost were evident decades later, to age 50, suggesting that there could be significant future savings to healthcare budgets if rates of adolescent conduct and emotional problems could be reduced. TRIAL REGISTRATION: Not applicable.

Early onset of care needs in the older population: The protective role of housing conditions.

Most older people wish to live in their own homes as they age and to have a choice over their housing and care situation. Housing has the potential to play a key role in promoting independence, delaying and/or preventing the onset of care needs and in influencing the level and type of care provision required. However, many older people live in homes that are not suitable for their comfort and needs. Our study focuses on older people living in non-specialist housing in England and aims to i) explore how housing characteristics cluster; and ii) investigate their association with an early onset of care needs. We used four waves of a large representative longitudinal sample of people aged 50 or over, covering the period 2012 to 2020. We performed Latent Class Analysis and a Cox regression survival model to provide answers to our research questions. We found that people living in poor housing conditions or living in social rented housing are more likely to experience early onset of care needs, which may lead to a higher demand for, and utilisation of, long-term care services. We believe that gaining a better understanding of the relationship between housing-related conditions and care needs is paramount from the preventative and service provision point of view, and is of relevance to policymakers, practitioners, and current and future adult long-term care users.

Receipt of help by people with cognitive impairment: results from the English Longitudinal Study of Ageing.

OBJECTIVES: We investigated whether people with dementia or low memory/orientation reported more help misaligned with needs - more unmet need and/or more unrequired help - than other people with similar levels of functional limitation, and examined associations with quality of life. METHODS: From pooled English Longitudinal Study of Ageing data from waves 6, 7, and 8, we identified community-dwelling people aged 50+ with: dementia (n= 405); low memory/orientation but no dementia (n= 4520); and intact memory/orientation (n= 10,264). Unmet need (not receiving help for the functional limitation) and unrequired help (receipt of help without the respective functional limitation) were used as outcomes in two-part regressions. Quality of life (CASP-19) was used as a continuous outcome in a linear regression. Functional limitation and its interaction with cognitive status and socio-demographic factors were included in the models. RESULTS: Those with dementia or low memory/orientation but few functional limitations reported more unmet needs and unrequired help than their counterparts with intact memory/orientation. At high levels of limitations, the needs of those with dementia or lower memory/orientation were met more often and the receipt of unrequired help was similar compared to those with intact memory/orientation. Unmet need and unrequired help were associated with poorer quality of life. CONCLUSIONS: Unmet need and unrequired help were particular challenges for those with poorer cognition and potentially at early stages of dementia; they were associated with lower quality of life. Our results highlight the importance of good-quality timely diagnosis, identification of needs, and person-centred assessment to help improve quality of life.

Functional disability and utilisation of long-term care in the older population in England: a dual trajectory analysis.

This study investigates the developmental trajectories of long-term care needs and utilisation in older people aged 65 years and over in England. The data came from the English Longitudinal Survey of Ageing (ELSA, waves 6-9, 2012-2018, N = 13,425). We conducted dual trajectory analyses to cluster people's trajectories of care needs (measured by functional disability) and utilisation into distinct groups. We conducted logistic regression analyses to identify the factors associated with trajectory memberships. We identified three trajectories of long-term needs (low, medium, and high) and three trajectories of care utilisation (low, medium, and high). Both care needs and care hours increased with age, but the speed of increase varied by trajectory. Females, minority ethnic groups, people with low wealth, and those experiencing housing problems were more likely to follow the joint trajectories characterised by higher care needs and higher care intensity. People with low or medium care needs stayed in the same trajectories of care utilisation. In contrast, people in the high-needs trajectory followed divergent trajectories of care utilisation: 63% of them followed the trajectory of high care intensity and the rest (37%) followed the trajectory of medium care intensity. Lack of spouse care was the leading predictor of trajectory divergence (OR = 3.57, p < 0.001). Trajectories of care needs and utilisation are highly heterogeneous in later life, which indicates persistent inequalities over time. Single people with multiple functional limitations face an acute and enduring risk of inadequate care and unmet needs. The amount of support is as important as the availability of support. Supplementary Information: The online version contains supplementary material available at 10.1007/s10433-022-00723-0.

Inequalities in unpaid carer's health, employment status and social isolation.

Providing higher-intensity unpaid care (higher care hours or care within the household) is associated with negative impacts on people's paid employment, mental health and well-being. The evidence of effects on physical health is mixed and carer's social and financial outcomes have been under-researched. The biggest evidence gap, however, is on how outcomes vary by factors other than type or level of care provision, in particular socio-demographic factors. Our study used two waves of data (2017/19 and 2018/2020) from the United Kingdom Household Longitudinal Study for people aged 16 and older. We investigated the effects of providing care for 10 or more hours a week or within the household in interaction with people's socio-demographic characteristics. Outcomes included mental and physical health, social isolation, employment status and earnings. We found that caring responsibilities interacted with gender, ethnicity, socio-economic status (as measured by highest educational qualification), or age to affect carers differentially in a number of areas of their lives leading to, and exacerbating, key disadvantages and inequalities.

A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers.

Introduction: COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life. Methods: In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life. Results: Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life. Discussion: Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.

How have the Care Act 2014 ambitions to support carers translated into local practice? Findings from a process evaluation study of local stakeholders' perceptions of Care Act implementation.

The Care Act 2014 imposed new statutory duties on English local authorities in relation to family or informal carers and it broadened carers' statutory entitlements to assessment, care and support, irrespective of eligibility for local authority funding of the person they care for. Despite this legislative framework, local authorities appear to be translating the new legal obligation into practice in different ways. This paper draws on evidence from in-depth interviews held during 2017-2018 with key stakeholders in three English local authorities to investigate whether and how local efforts meet the Act's intention of supporting carers. We explored local goals associated with supporting carers, local authorities' approaches to needs assessment and service provision as well as barriers and facilitators to adoption of the new legal obligations towards carers. The paper draws on Twigg, J., & Atkin, K. (1995), typology to explore perceptions of local stakeholders of the interaction between formal care system and carers post-Care Act. The findings indicate that despite a clear Care Act emphasis on meeting carers' needs, when faced with financial constraints the formal care system approaches carers mainly as a resource and often supports carers to keep cared-for people away from health and social care systems. Although replacement care is a vital element in the Care Act's ambitions to support carers, in sampled authorities, it was often newly being subject to needs thresholds and financial assessment of people they care for, leading to reported conflicts of interests between carers' needs and those of cared-for-people. The Care Act is nonetheless seen as having made progress in legitimising carers' needs as clients. Social care professionals increasingly emphasise the importance of meeting carers' needs and well-being as valued and desirable outcomes.

A Longitudinal Study of Functional Unmet Need Among People with Dementia.

BACKGROUND: Understanding the changes of unmet need in dementia may enable effective targeting of help and allow people to stay in their homes longer. OBJECTIVE: We investigated changes in unmet need and functioning over a 4-year period and the role of socio-demographic factors in these changes among people with dementia. METHODS: 234 community-dwelling people with dementia at baseline were studied in three consecutive waves (four years) of the English Longitudinal Study of Ageing (ELSA). Unmet needs (self/informant-reported limitations for which no help was received) and functional limitations (self/informant-reported difficulties in activities/instrumental activities of daily living and mobility) were modelled with latent growth curves. Sex, age, partnership, and socioeconomic status at baseline were used as predictors. Admission to a care home was an additional outcome. RESULTS: Unmet needs increased over time, especially among those who initially had more functional limitations. Unmet needs contributed to faster decline in functional capability, except among those with many limitations initially. The major driver of increased unmet needs was not having a partner (direct effect). Age, sex, and wealth contributed indirectly via the initial level of functional limitations and/or unmet need. Those with several functional limitations but few unmet needs were most likely to move to a care home. CONCLUSION: Unmet need increases over time in those with dementia with mitigating effects of having a partner and initial levels of functioning. Meeting needs at early stages of dementia, especially for those living alone and when functional limitations are low may help slow functional decline.

The high cost of unpaid care by young people:health and economic impacts of providing unpaid care.

BACKGROUND: Many countries worldwide have experienced reductions in provision of formal long-term care services amidst rising need for care. Provision of unpaid care, meanwhile, has grown. This includes care provided by young people. Care responsibilities can affect a young people's health, education and employment. We aimed to investigate the impacts on the employment and health of young people aged 16 to 25 of providing care, and the associated individual and public expenditure costs. METHODS: We examined employment, earnings and health impacts for individuals, and a range of economic impacts for society, focusing on young people aged 16 to 25 providing unpaid care in England. We applied regression analysis to data from three waves of the UK Household Longitudinal Study (2013/2015, 2014/2016, and 2015/2017) to compare employment and health outcomes among carers and non-carers, and two-part Generalised Linear Models to estimate costs. To address potential selection bias, we then used propensity score matching methods to explore outcomes for a matched sub-sample of young adult carers who started providing care at baseline (2014/16). RESULTS: Young people aged 16 to 25 who provided care at baseline (2014/16) were less likely to be in employment, had lower earnings from paid employment, and had poorer mental and physical health at follow-up (2015/17) compared to young people of the same age who were not providing care at baseline.. There were substantial costs to the state of young adults providing care from lower tax revenue, welfare benefit payments, and health service use. In aggregate, these costs amounted to £1048 million annually in 2017. CONCLUSIONS: High individual impacts and costs to the state of providing unpaid care, and the potential of such impacts to compound existing inequalities, have many implications for policy and practice in the health, social care, employment and welfare benefits sectors. In particular, the findings reinforce the case for reducing the need for young people to provide unpaid care, for example through better provision of formal care services, and to provide ongoing support for those young people who do provide care. As impacts are seen in a number of domains, support needs to be multidimensional.

Long term economic impact associated with childhood bullying victimisation.

Being bullied is associated with mental health problems in childhood, with increasing evidence of persisting negative impacts, and increased mental health service use, into adulthood. There are also impacts of bullying victimisation on employment, income and being in poverty, but little is known about the long-term economic impacts. We therefore aimed to estimate the most important economic consequences at age 50 of being bullied in childhood: to our knowledge this is the first study that does so. Using 1958 British birth cohort data collected in 1965, 1969, 1991, 2003 and 2008 (study samples size 7323-9242), we find substantial and durable individual and societal economic impacts four decades after the childhood bullying occurred. Both men and women who were bullied in childhood were less likely to be in employment and had accumulated less wealth in the form of home-ownership or savings than participants who were not bullied. Individual earnings from paid employment were lower for women who were bullied in childhood. Frequent bullying in childhood was also associated with higher societal employment-related costs for men and higher health service costs for women. Our findings underline the importance of preventing bullying in childhood and, as the consequences are so long-lasting and pervasive, supporting people still experiencing the negative consequences in the decades that follow.

Public expenditure costs of carers leaving employment in England, 2015/2016.

In the context of global population ageing, the reconciliation of employment and unpaid caring is becoming an important social issue. The estimation of the public expenditure costs of carers leaving employment is a valuable measure that is of considerable interest to policy makers. In 2012, the Personal Social Services Research Unit estimated that the public expenditure costs of unpaid carers leaving employment in England were approximately £1.3 billion a year, based on the costs of Carer's Allowance and lost tax revenues on forgone incomes. However, this figure was known to be an underestimate partly because it did not include other key benefits that carers who have given up work to care may receive. This paper presents a new estimate of the public expenditure costs of carers leaving employment. Key sources of information are the 2009/2010 Survey of Carers in Households, 2011 Census and 2015/2016 costs data. As well as Carer's Allowance, the estimate also now includes the costs of other benefits that carers leaving work may receive, namely, Income Support and Housing Benefit. The results show that the estimated numbers of carers who have left employment because of caring have increased from approximately 315,000 to 345,000. Due mainly to the inclusion of a wider range of benefits, the public expenditure costs of carers leaving employment in England are now estimated at £2.9 billion a year. The new estimate comprises £1.7 billion in social security benefits paid to people who have left their jobs because of unpaid caring, plus another £1.2 billion in taxes forgone on this group's lost earnings. The paper concludes that, if there was greater public investment in social care, such as "replacement care" to support carers in employment, and fewer carers then left employment, public spending on benefits would be lower and revenues from taxation would be higher.

The role of youth mental health services in the treatment of young people with serious mental illness: 2-year outcomes and economic implications.

AIM: This study aims to evaluate the outcomes and economic case for a UK innovative youth-specific mental health service for 16-25 year olds. METHODS: A pre-, during- and post-treatment comparative design for 20 young people at high risk of developing psychosis who received 2 years' treatment with the service, using outcomes that concurred with the service aims: changes in mental health, employment rates and service use. RESULTS: Forty-five percent of those at risk and with symptoms of serious mental illness commencing treatment were not receiving mental health services at baseline. Compared with service use prior to treatment at the youth-specific service, hospital admissions, Accident and Emergency, and criminal justice system use appear to decrease over the 2 years of treatment and the year after treatment, with potential cost differences of £473 000. Mental health improved or stayed the same, compared with baseline. Employment rates improved, although the sample size for this is very small. Potential cost differences associated with service users moving into employment over the 2 years are £148 000. The estimated cost over 2 years of providing the youth-specific mental health service to these young people was £106 000. CONCLUSIONS: Given the extensive long-term negative consequences and high costs of untreated mental illness in the 16-25 age group and the documented problems young people have in receiving appropriate services, this youth-specific, age-appropriate service model appears to be successful, with improved outcomes and cost differences in the short-term, and with encouraging implications for the longer term.

Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for.

Previous UK research has found expressed unmet need for services by unpaid working carers and among disabled and older people. There are, however, suggestions from research that views on unmet needs for services differ between carers and care-recipients. Working carers in the UK say that the care-recipient is sometimes reluctant to accept services and the few international comparative dyad studies that have been carried out find that carers perceive higher unmet need than care-recipients. Recent policy discussions in England have also recognised that there may be differences of opinion. We collected data in 2013 from working carer/care-recipient dyads in England about perceived need for services for the care-recipient, disability, unpaid care hour provision and individual and socio-demographic characteristics. We find that care-recipients as well as their carers perceive high unmet need for services, although carers perceive higher unmet need. For carers, unmet need is associated with the disability of the carer-recipient and being the daughter or son of the care-recipient; for care-recipients it is associated with unpaid care hours, carers' employment status and carers' health. The majority of dyads agree on need for services, and agreement is higher when the working carer provides care for 10 hours or more hours a week. Services for care-recipients may enable working carers to remain in employment so agreement on needs for services supports the implementation of legislation, policy and practice that has a duty to, or aims to, support carer's employment.

The Effectiveness of Paid Services in Supporting Unpaid Carers' Employment in England.

This paper explores the effectiveness of paid services in supporting unpaid carers' employment in England. There is currently a new emphasis in England on 'replacement care', or paid services for the cared-for person, as a means of supporting working carers. The international evidence on the effectiveness of paid services as a means of supporting carers' employment is inconclusive and does not relate specifically to England. The study reported here explores this issue using the 2009/10 Personal Social Services Survey of Adult Carers in England. The study finds a positive association between carers' employment and receipt of paid services by the cared-for person, controlling for covariates. It therefore gives support to the hypothesis that services for the cared-for person are effective in supporting carers' employment. Use of home care and a personal assistant are associated on their own with the employment of both men and women carers, while use of day care and meals-on-wheels are associated specifically with women's employment. Use of short-term breaks are associated with carers' employment when combined with other services. The paper supports the emphasis in English social policy on paid services as a means of supporting working carers, but questions the use of the term 'replacement care' and the emphasis on 'the market'.