Unpaid carers provide an essential but often invisible service

I have not had a day off in 11 years. I’m always alone.

I’m in an ongoing nightmare… it is exhausting and stressful.

It's like a really impossible, unpaid job, that can punch you emotionally when you least expect it.

I feel like screaming.

These are the words of unpaid carers. Their sentiments should be rare, but they’re not. They’re the norm for the millions of people supporting a loved one who is long-term unwell, dis-abled¹ or elderly. Carers in the UK today are struggling with poverty, anxiety, depression, physical health ailments, social isolation, and workplace difficulties, all because they’re supporting someone they love. It’s a system of suffering, and it must change.

There is often a knee-jerk response to this stark reality: if we invest in social care, family members can be ‘designed out’ of care provision, removing their suffering and ‘freeing’ them for paid labour instead. Funding social care is certainly very important. Waiting lists are hundreds of thousands strong, respite care (which gives family carers vital breaks) is wildly under-funded, and working conditions within paid care services are notoriously poor. This has a knock-on effect on family carers. I hear stories about this impact on a weekly basis: a daughter trying to focus at work while her father goes unfed at home because the paid care shifts are too short to make meals; a mother who’s had barely 4 hours sleep a night for years because the local respite care got cancelled; a dis-abled neighbour left to perform wound care without help, while their name languishes on a waiting list.

Improving social care would ameliorate some of this suffering, but it wouldn’t remove the need for family carers overall. Consider this: many of the people quoted above have some help from paid care, yet they remain carers, and they remain in strife. If we look at other countries with better funded social care provision, we still see intensive involvement from family members. For example, Sweden provides a higher number (proportionally) of long-term care beds for over 65s than the OECD average, yet 18% of the adult population still provides care, with a peak of 24% in the 45 to 64 age bracket. It seems that the theoretical equation of ‘fund social care = remove family carers’ does not work so well in reality. In fact, there is no care system that does not have family members and friends as its backbone: social care must be understood as necessary, but insufficient.

There are several reasons for this, not least the notion of love: when our loved one is sick, dis-abled or elderly, we want to care for them, at least some of the time. Other reasons are less obvious and only appear if, like me and the many carers I’ve come to know, you’ve been in the trenches yourself. These less obvious reasons constitute an evidence gap which JRF is now seeking to address. Producing this data will help to communicate why carers are an inextricable part of the UK’s care infrastructure. In turn, this will support the case for much-needed improvements to carers’ current rights and resources.

Invisible but essential: new evidence of carers’ roles

In mid-summer 2024, I recruited a cohort of carers in England and Wales. They range in age from their 20s to their 80s, and they are caring for a child with additional needs, a spouse, or a parent. Some have been caring for a short time – a year or so – while others have been caring for many decades. Together, they’re creating compelling new evidence about carers’ roles, captured through a 12-week diary-keeping exercise (written and visual) and qualitative interviews. Their data focuses on 3 areas, outlined below, each designed to close the evidence gap and to build understanding of carers’ irreducible role.

How much, and in what ways, are carers performing ‘indirect care’ for their loved one?

This function (which is especially relevant when the person needing care is unable to perform it themselves, for example due to neurological issues) is often overlooked as part of the carer role. It entails management, advocacy and oversight of paid care provision, state support and medical services. Examples include arranging appointments, filling in forms to claim benefits, accessing mobility aids, ensuring paid care staff have performed crucial tasks, and much more. By asking the cohort to quantify and describe these forms of indirect care, we’ll learn about the significance and nature of this function – a function which does not disappear with improved external support, but may in fact increase.

How much, and in what way, are loved ones’ health changes affecting carers?

People with long-term illnesses, disabilities, or who are frail and elderly often experience fluctuations in their condition, for example if they fall, contract an infection, or their symptoms or medications change. These unpredictable changes intersect problematically with planned services, often causing loved ones to step in. We’ll find out how much this happens across the period and its knock-on effects on external caring arrangements and carers’ own plans.

How much, and in what way, are changes to paid care provision affecting carers?

During on-boarding calls, participants noted repeatedly that failures of paid care services (such as cancellations of shifts, or impromptu closures of centres) were causing them to step in and provide care, alongside the unpredictability of their loved ones’ conditions as described above. In response, this question was added so that we can find out how much this is happening and the ways in which it happens.

Taken together, these 3 areas elucidate the role of family carers, showing that they are an essential component of any care infrastructure.

Full report coming soon

The study is already well underway, with diary entries full of rich, nuanced and thought-provoking evidence. We look forward to sharing the report with you in the coming months.