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“Am I a carer?” Why self- and social identification of carers are becoming unavoidable topics

young caregiver with elderly man in park

“Am I a carer?”  Why self- and social identification of carers are becoming unavoidable topics

Across the UK, approximately 10.6 million (1 in 5 adults) provide unpaid care and support for an ill, older or disabled family member, close friend or neighbour. Centre for Care research has found that, between 2010-2020, every year 4.3 million of people became unpaid carers, and suggests that this number will increase as a consequence of our ageing population and healthcare improvements.

And yet, many people do not recognise themselves as carers, nor are they identified as such by organisations and institutions, even if their role is increasingly important for the social and economic sustainability of the welfare system.

Personal identification as an unpaid carer: a complex process

The Carers UK’ “State of Caring” report (2022) analyses the results of an online survey involving 13,400 unpaid carers, and highlights the length of time it can take individuals to recognise their roles, and work, as carers. In just of half of participants (51%), it took them over a year, and for over a third (36%) of respondents, three years or more.

Why it takes so much time for carers to self-identify is complicated. However, one element could be the complexity of the caring role.  

The physical, emotional, and cognitive tasks associated with caring may only become clear gradually, leading to a progressive development of an identity as caregiver. This entails negotiating personal needs and working timetables with the contingent agenda of the person cared for, perceiving constant responsibilities, and realising that a longstanding relationship characterised by reciprocity, shared experiences, and well-established roles needs to be renegotiated. The State of Caring report also highlights social expectations as a factor in preventing self-identification as an unpaid carer. Almost three-quarters (71%) of survey participants stated that seeing themselves primarily as a family member or friend was a barrier to recognising themselves as a carer. Being a carer of a close person is perceived as part of being a ‘good’ partner, parent, or friend, and this may generate ambivalent feelings: gratification and interconnection, as well as anxiety and moral obligations.

Why is identifying unpaid carers so important? 

The self- identification of unpaid carers is important to request and obtain the help needed to care safely and well. As established by the Care Act 2014, all adult carers are entitled to ask the Local Council for an evaluation of their needs, to assess their eligibility for suitable and available support. The Carers’ Assessment allows for recognition as a ‘registered carer’, but only 25% of English unpaid carers interviewed said that they had undergone the assessment, and of those not assessed 39% explained that not knowing what an assessment was, created the main obstacle to engaging with the assessment process.

Not identifying unpaid carers is not only a personal issue, but also a public and collective one. It is in society’s best interest that organisations, in healthcare and elsewhere, identify carers. Caring has a huge economic value. The work of unpaid carers was valued at £132 billion per year in 2015, and £193 billion per year (£530 million per day) during the Covid-19 pandemic. According to Carers UK, in 2021, when the consequences of the pandemic were still ongoing, two-third of unpaid carers used their own income or savings to pay for care, support services, equipment, or products for the person they care for. Considering this data, the suspicion arises that overlooking carers suits society, as their contribution is bigger than what they receive back in term of help.

The relational and financial worth produced by carers, however, is fragile and needs supporting. Carers’ wellbeing may be impacted by their role, as suggested by increasing evidence that caring should be considered as a social determinant of health. In addition, the cost-of-living crisis has caused growing financial pressures for individuals and families, with 63% of carers revealing they were extremely worried about managing their monthly costs.

In what contexts may unpaid carers be systematically identified? 

Healthcare and working settings are a privileged context for the systematic identification of unpaid carers.

Carers UK recommends the adoption of a strategic and clear approach across all NHS structures, which would improve data collection about the number and role of carers, and to the recognition of carers as ‘partners in care’. Within the healthcare system, general practices have a crucial role in carer identification. This may involve the whole practice team as well as trained link workers, and would occur at different phases: at registration, diagnosis, and on hospital admission or discharge.

elderly couple speaking with health professional

Identifying and registering carers would benefit both the practitioners (who could determine a patient’s reference person), and the carers. These might have tailored replies to their health needs, priority access to vaccinations, and the possibility of receiving official documentation on their role as carer for applying for benefits. Currently, the identification of carers across the healthcare system remains fragmented. However, the pandemic has called attention to the role of unpaid carers, and there are promising steps forward towards the development of technical guidance for GPs and of quality standards for carer-friendly GP practices.

The workplace is another key context for identifying and supporting carers. During the “State of Caring Conference” (November 2022), speakers explained that in the past few years there was a significant push in recognising and supporting unpaid carers at work over and above legislative responsibilities. In professional settings, unregistered and non-disclosed carers are difficult to identify, partly because self-declaration is not mandatory, and partly because carers may feel guilty or stigmatised when juggling work and their caring role. Caring responsibilities, in turn, may have a significant impact on their professional performances and progressions. Even if achieving a ‘good enough’ work-life balance remains complex, there are signs of cultural change, and the recognition that caring can have a positive spill-over effect in terms of skills, with adequate arrangements to benefit both workers and employers.

A number of employers now pay more attention to unpaid carers from the recruitment phase, with job advertisements including information on flexible working arrangements and homeworking, accreditations, or commitment to support. Actions to help carers include raising awareness of managers, the organisation of peer support groups, and the possibility of asking for a different role or even to take a career break. Finally, in England, the Carers’ Leave Bill, currently in the process of approval, will entitle eligible unpaid carers to 1 week of unpaid leave a year, regardless of how long they have been in their workplace.

Identifying unpaid carers and paying attention to their needs represents the steps in recognising the value and importance of their ‘reproductive work’, namely the caring and nurturing activities that sustain daily life and support individuals and communities.

About the author

Serena is a Postdoctoral Researcher Associate affiliated to the ESRC Centre for Care and based at the University of Kent, Centre for Health Services Studies. In her current role of qualitative researcher in the Centre for Care team, Serena is working on the project ‘Care workforce change: organisation, delivery and development.

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