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Briefing
Care

The future of care needs: a whole systems approach

This new approach brings together action to improve paid care with support for unpaid carers and social networks.

Looking at data on people’s interaction with care services, we find that in elder care, informal care use far outstrips formal care use, while for childcare a significant minority do not use any formal childcare. JRF analysis found that over the period 2016–2022, over half of people aged 65 and over who were being cared for only accessed informal care while under a fifth only accessed formal care. For children, the numbers accessing formal care were higher. Just over half of families of children in England aged 14 and under used formal, paid services over the same time period. The variance in formal care use between these two groups could be for a range of reasons: for example, childcare is comparatively more affordable and accessible than adult social care.

These are likely conservative estimates as people can draw on multiple types of care to meet their needs. Our analysis found that around a quarter of people aged 65 and over being cared for accessed both formal and informal care. We also know that children being cared for formally, especially very young children who need round-the-clock care, are also being cared for informally by family or other networks.

Finally, we also know that paid support which we might not class as ‘care’, like neighbours checking in and cleaners and handymen helping people live independently, is an important component of meeting care needs, but which is often forgotten. Our analysis shows that approximately 70% of disabled people over 65 using care in the UK received help through paid support services like these.

Unpaid care is a crucial part of the future of care needs

Expanding paid care services will help reduce the burden of care on women and those who have no other choice to care, and are a crucial way to help women enter and stay in the labour market. But it would be very difficult for government to eliminate unpaid care altogether.

People become unpaid carers for a range of reasons, and many genuinely want to care, while others feel they have to or have no other choice but to care (for example, because their household cannot afford paid care). Forthcoming JRF research on people’s attitudes towards care shows how people, despite barriers, do want to care. When asked to score how happy or unhappy people felt about providing care from 1 (negative feelings) to 10 (positive feelings), unpaid carers in our survey tended to be happy, with a mean score of 7.1 (Jitendra et al., 2024, forthcoming).

Digging deeper, we asked both unpaid carers and parents who provide the bulk of care for someone to tell us why, and the frontrunning reason for both groups was that they wanted to, 46% of unpaid carers and 40% of parents said this. Only a minority said they provided most of the care for someone because paid care services were too expensive, 15% for unpaid carers and 18% for parents.

Additionally, the relationship between informal and formal care is complex. It is not true that increased availability of unpaid care necessarily means a comparable reduction in the need for, or use of, paid care services. Researchers have found that even when people draw on formal care services, there is still a need for unpaid care, for example to liaise with care workers for someone with high care needs. One US study found that more formal care hours were not associated with any reduction in informal care hours undertaken (McMaughan Moudouni et al., 2012).

Research from Scotland, where personal care has been free for over 65s since 2002 and all adults since 2019, found that the presence of unpaid carers could actually increase the use of paid care services in the short term as unpaid carers helped cared-for people access their entitlements (Lemmon, 2020). More broadly, care needs can also be volatile and changeable. As Emily Kenway, an author and unpaid carer writes, illness can be ‘lawless’, meaning the often mechanistic routine through which paid care services are delivered is unlikely to meet every care need (Kenway, 2023).

This points to a need for more unpaid care as well as an expansion in paid care services. PSSRU estimated in 2018 that the number of disabled older people receiving unpaid care is projected to increase from 2.1 million in 2015 to 3.5 million in 2040, with more disabled older people projected to receive care from their partner than their child. This includes people with a range of care needs, from intense and full-time to low-intensity (Wittenberg et al., 2018).

Using data from Understanding Society and demographic growth estimates, we estimate that there will be 400,000 more people caring for elderly, sick or disabled people for 10 hours or more in the UK by 2035. This represents an 11.3% increase overall. If we broaden our scope to include low-intensity carers (0–9 hours), this grows to an additional demand for unpaid carers in 2035 reaching 990,000, 10.6% higher than now. In total, the projected number of high-intensity carers needed by 2035 is 4 million and for all carers is 10.3 million. It is likely that unmet care needs would also continue to rise alongside this, given that the proportion of over 65s in the population is growing faster than the average.

While the largest projected increase in unpaid carers is amongst the over-65 population, there is due to be a marked increase in the number of working-age people caring for elderly, sick or disabled people, with 130,000 more working-age people caring for 10+ hours by 2035. This rises to 350,000 if you include all carers. This is likely to present a challenge to the labour market, with 2.7 million working-age people undertaking more than 10+ hours of unpaid care by 2035.

The projections for parent carers show a more complicated view. Low birth rates between 2012 and 2022 means there are fewer children to care for, despite a recent uptick in birth rates. Our analysis suggests that by 2035, there will be 7 million parents caring for children under 14, compared with 7.2 million now.

Care needs are getting more intensive and long-running

Changes in the health of the nation will also have an impact on caring needs. The NHS’s Personal Social Services Survey of Adult Carers in England for 2023–4 which surveys over 200,000 carers found carers primarily supported people with physical disabilities, long-standing illnesses, dementia and problems with ageing.

We are already seeing changes in the needs which carers are meeting suggesting the demand for care is in flux. For example, more carers were caring for someone with dementia, a mental health condition or a learning disability in the last 10 years, while fewer were supporting those with a physical disability or problems connected to ageing (NHS England, 2024).

How could these changes affect the type of care we need?

The nature of different health conditions affects the type of care needed to manage them:

  • Learning disability can create very long-term and intensive care needs. Research with carers has found that the majority of carers looking after adults with learning disabilities had been doing so for over 20 years (NHS England, 2022).
  • The projected increase in the prevalence of dementia will necessitate more intensive and long-term care needs, some of which will need to be met by an increase in paid care services but much of which will likely need to be met by unpaid carers.
  • An increase in the prevalence of diabetes could necessitate more specialised knowledge about medication and treatment to manage the condition, as well as care needs which can arise unexpectedly or suddenly if the disease is not yet diagnosed.
  • Increases in the prevalence of anxiety and depression, the most common mental health conditions, will likely require both more high-intensity care, and care which can meet unexpected needs, given the sometimes volatile nature of these conditions.

We can see that the intensity of care needs is already changing. The number of full-time carers (those caring over 35 hours per week) is increasing sharply while other types of carer remain broadly steady. Low-intensity care (0–9 hours per week) makes up the bulk of care frequency but has also remained stable.

An increase in the number of high-intensity carers poses significant questions for policy-makers, these carers’ ability to work is severely curtailed, and largely their individual incomes will come from savings and benefits. This points to a need for a benefits system which offers carers dignity and protection from hardship, over the potentially long periods they may need to draw upon it.

But even as more women work, they remain the likely primary carers in a household, both for adults and children. Our analysis of Understanding Society found that in the last 10 years, men and women’s caring patterns remain broadly unchanged in the UK, with women significantly more likely to be undertaking unpaid care for a sick, elderly or disabled person (see Figure 6). While we cannot get comparable data for parents from Understanding Society, Figure 7 shows, using recent data for the UK, that women are providing more childcare, even as more mothers are in the workplace.

Finally, we find that there are more people with caring responsibilities in the UK, both those caring for adults and children, in work than before. Figure 8 shows that this is particularly the case for parents, whose rates of employment participation have increased by 14% points from 2010.

Taken together, this means that even as birth rates have declined and there may be less demand for childcare, the supply of carers is also curtailed because fewer women are available to do it. 

Some of this unmet need will be met by paid care services — this is especially true in early years education and childcare, where working parents of very young children will become eligible for subsidised childcare from this autumn. However, young children need round-the-clock care, and research suggests placing young children in full-time childcare long term could have negative developmental impacts (Erickson, 2018). This points to the need for more unpaid care capacity needed, not solely paid care. For adults needing long-term care, there is no planned expansion of subsidised social care planned to meet the demand for care created by changing gender and work norms.

Higher demands for care need new solutions. We should not assume women in families will pick up the burden of care, and should recognise that the financial penalty for doing so is increasingly more consequential. That more carers, of both adults and children, are engaged with the labour market, and that this trend is likely to continue, suggests that reforms which help people care and work will be central to meeting the changing demand for care.

Figure 9: Systems will need to work together to meet future care needs

More generous benefits can act as an incentive to undertake unpaid caring. Given the future of the care system will depend heavily on the availability, and wellbeing, of unpaid carers, we should see carer benefits as part of the National Care Service.

Work and benefits should integrate for carers, for example, many carers want to work but are restricted by an earnings limit in Carer’s Allowance. Government needs to ensure working-age carers can benefit from tapered benefit income, either through a redesigned Carer’s Allowance payment, or by ensuring eligible carers are claiming Universal Credit.

The National Care Service could better personalise care by embedding local ‘circles’ which offer emotional and manual support for people needing help. In childcare, this could include cooperative models of childcare where parents undertake care for their children and others in a rota.

A Future Care Needs Taskforce

Without a change in direction, rising care needs risk overwhelming our outdated and fragmented systems.

To meet these complex and growing needs as part of a cross-departmental and joined-up strategy, Government should set up a new Future Care Needs Taskforce for England. This would collectively plan how to meet these needs in different domains, being mindful of how these systems can interact to best support those needing care and those undertaking it. This would likely also save the taxpayer money. While the relationship between take-up of paid and unpaid care is complex, we can reasonably say that in the long run it is cheaper to meet care needs through unpaid care and paid care services than through paid care services alone.

Government should set the scope of the taskforce, like that of the Child Poverty Taskforce, to set the overall strategy and goals for meeting growing and changing care needs, this could be limited to planning how to meet care needs, or have a broader remit to also work to reduce care needs where possible.

The Taskforce should be set up by the end of 2024 and chaired by the Secretary of State for the Department for Health and Social Care with ministerial representation from the Department for Work and Pensions, the Department for Business and Trade, the Ministry of Housing, Local Government and Communities and the Department for Education and regular discussions with devolved governments, with the potential to include Public Health England if the remit of the Taskforce includes reducing care needs. This Taskforce should be able to commission research to set out the demand for different kinds of care and how we might meet them, consult with stakeholders, plan interventions, and make policy recommendations to government ahead of the 2025 Spending Review. When strategy has been decided, it should report to the Health Mission Delivery Board every 6 months.

The Government has a unique opportunity to build a system capable of turning the tide and offering an exemplar to other countries facing the challenges of a changing society. But it is only through this cross-governmental collaboration that we can meet one of the greatest challenges our nation, and the world, faces.

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