Introduction

The importance of recognising the contribution of unpaid (typically familial) carers and supporting them to meet their own needs has become increasingly accepted in policy and practice in the UK and internationally over recent years. In England, for example, the Care Act 2014 established the carer’s right to an assessment of their own needs and created a duty for local authorities to provide information and advice and to meet carers’ eligible needs (Henwood et al, 2017).

Understanding the core purpose of carer support is vital in shaping the nature of the support offer, ensuring that it is appropriate in intensity and duration and assuring that impact and outcomes can be measured. Despite the greater awareness of carers and recognition of the importance of meeting their needs, it is also apparent that the ‘basics’ are often missing, particularly in terms of identifying carers (and encouraging them to self-identify), undertaking assessments of carers’ needs and offering them anything beyond general information and advice, or ‘signposting’.

Evidence from a growing body of research points to the commitment and dedication of carers, with many taking on a role that becomes progressively more demanding as the needs of the person they care for intensify, often as the carer experiences their own deteriorating health and advancing years (Henwood et al, 2018; Zhang et al, 2022). Most carers want to be able to continue caring but also need support to enable them to do so. That support should be reliable and consistent, offered at regular intervals, and intended to build the carer’s resilience. In practice, carers’ narratives too often tell a story of only getting support at a point of crisis or when they become desperate, and that support tends to be a one-off or intermittent offer that sets them on a path of navigating highs and lows. Far from supporting carers, such a pattern is likely to undermine their psychological well-being and deplete their personal strengths and resources.

In this article, we draw on a recent evaluation of carer support commissioned by a local authority in England to reflect more broadly on the conceptualisation and framing of carer support in local policy and practice. We argue that the objectives of support are often not clearly articulated or may be based on false assumptions and expectations around the outcomes of services, impacting what and how support is offered. The service we evaluated was commissioned using a social impact bond (SIB), whereby payment was related to outcomes focused on improved carer well-being and reduced ‘carer breakdown’. The evaluation used a theory-based mixed-methods approach, drawing on a range of material, including administrative data (performance indicators and case files), carer-reported outcome measures and semi-structured interviews with stakeholders, including carers, at various points during the three-year evaluation (Institute of Public Care, 2024).

Carer support

The case for supporting carers is in part a moral or ethical one (as well as a legal requirement): we should support what carers do, not least because without them, the health and care system would be overwhelmed. This point is made forcefully by the carer representative organisations that highlight the notional ‘value’ of unpaid care: an estimated £162 billion annually in England and Wales in 2021 (Petrillo and Bennett, 2023). Despite this substantial value, it is also clear that the support provided to carers is often more apparent than real. Census data from 2021 indicate an increase in the number of hours of care provided, reflecting a decline in the availability of formal social care support and the impact of the COVID-19 pandemic in reducing access to services and collective provision, including day-care opportunities.

The idea of ‘carer breakdown’ is a complex and controversial one: most carers do not ‘break down’ in the sense of suddenly giving up their caring role; rather, they will continue to care in the face of almost impossible pressures. However, plenty do reach exhaustion and feel that they cannot continue to care at the same intensity and are desperate for support but keep struggling on because of the complex emotional demands of their responsibilities (Henwood et al, 2018; Zhang et al, 2022).

Our evaluation found the commissioners placed heavy reliance on ‘reducing carer breakdown’ as a key outcome indicator, together with an expectation that the prevention of such ‘breakdown’ would result in delayed or reduced use of adult social care and support, translating into substantial savings over five years. We found that support to carers generally improved their self-reported well-being (as measured by assessments using the Carers Star^TM). However, the assumption of avoided carer breakdown and cost savings for adult social care was not demonstrated and seemed to be a distorting objective. Furthermore, rather than seeing carer input as a substitute for formal care and support, a complementary approach appeared to be more productive. Carers who were managing more intensive or complex needs were more likely to benefit from contingency support (including respite) provided through adult social care for the person with care needs.

The importance of addressing the carer and the person cared for as a dyad (that is, addressing the quality of life of the carer and the person they support individually and jointly rather than as entirely separate ‘cases’) is increasingly recognised in the carer discourse and research, though often overlooked in practice (Rand et al, 2022). This is not without controversy, however, and there are risks that the needs of carers can become overlooked or given less priority than the needs of a care recipient (Rand et al, 2022). A dyadic approach to the needs of the carer and the person cared for was not a stated objective in the carer service we evaluated, and we found a lack of connectivity in systems and processes between the carer support and adult social care. The analysis of carers’ and care recipients’ separate case records highlighted the lack of awareness or transparency of the respective services. The absence of integrated or joined-up support recognising the interdependency and interconnectivity of needs is particularly deleterious for carers providing more intensive support and for those with complex family dynamics or who have care and support needs of their own. Since carer support (including assessment) is frequently commissioned through third-sector carer organisations, the structural and organisational barriers to integrated, dyadic and holistic approaches to adult social care can be significant and difficult to overcome.

Carers continue to be seen primarily as a resource for formal care services: without carers’ extensive contributions to supporting people who are also receiving some level of social care, it is likely the demands on formal (and publicly funded) care would be significantly greater. However, the avoided costs in our evaluation were hypothetical and could not be evidenced through short-term savings (which the commissioners anticipated would be the case). We could not fully test this thesis, as the evaluation was taking place alongside the real-time implementation of the support programme and there was no counterfactual control group.

In any case, do we need to challenge the usefulness of ‘carer breakdown’ as a measure? It is a binary term that implies a person is either a carer or not. In practice, all care takes place in the context of a relationship, and there is a continuum of caring. One reason that people often do not self-identify as carers is that the point at which the ‘normal’ interactions and mutual support in a relationship tip into care can be a subtle and gradual process, particularly with older carers when there is an element of interdependence (Henwood et al, 2018; Zhang et al, 2022) and in cultures where family obligations carry expectations about responsibilities that are not distinguished as ‘caring’ (Greenwood et al, 2015).

Monitoring carer stress or assessing the risk of burnout might be more meaningful in detecting when carers need additional support, but the idea of ‘breakdown’ can be – intentionally or otherwise – pejorative. While the term might be used as shorthand to refer to someone needing full-time, publicly funded care because the carer cannot continue, it is also implicit that there is a failure on the part of the carer to be sufficiently robust, and it removes any idea of choice from the caring relationship. In reality, however, the decision to step back from caring when it no longer feels manageable is often taken over a longer period and might be a better outcome for all concerned. Choice is complex, but carers who feel that they have little choice experience poorer outcomes, with greater distress and worse health than carers who feel they have choices, including the choice to stop caring (Arksey and Glendinning, 2007; Larkin and Mitchell, 2016).

These are important matters that reflect more than linguistics; our evaluation found carers feeling abandoned and lost when their caring came to an end, either through bereavement or because the person cared for had moved into permanent care. They felt that they were no longer seen as carers and their identity was suddenly removed, along with any support. Despite the terminology, the definition of carer breakdown is very utilitarian, which ignores the emotional and psychological aspects and the potential impact of trauma and mental health deterioration. How post-caring support should be part of the package for carers is an often-overlooked component, as well as one where peer support and the teaching of coping strategies are likely to be of particular value.

Towards a new model?

Carer support is typically framed around ‘information, advice and support’ and measured against metrics of numbers of carers identified, assessments carried out, information and signposting provided, and types of support (such as carer breaks) delivered. This tells us relatively little about outcomes and whether support meets carers’ needs or how it could better do so, and the continuum of carer needs and circumstances needs to be matched by a similar range of support. Straightforward needs for information and advice might be adequately addressed by ‘low-level support’, but this is unlikely to be sufficient to meet complex or intensifying carer needs. If avoiding carer breakdown (and, by implication, avoiding more people needing greater input from adult social care) is used as a proxy for success, it may do so by ignoring the increasingly heavy demands and expectations falling on carers.

A debate is needed to build consensus around understanding ‘what good looks like’ for carer support, both in the UK and internationally. Appropriate objectives and metrics need to be more sophisticated than simply increasing the number of carers known to services, conducting more assessments and ‘avoiding breakdown’. Good support should be responsive to individual needs and circumstances, be reliable and consistent rather than only providing short-term or ad hoc interventions, enable meaningful choices, and reflect the diverse lived reality of carers and what really matters and makes a difference to them, to the people they support and to the quality life of both.

Funding

The evaluation was funded by Norfolk County Council.

Conflict of interest

The Institute of Public Care, Oxford Brookes University, was commissioned by Norfolk County Council to carry out the evaluation. The authors declare that there is no conflict of interest.