The future of care needs: a whole systems approach

The country’s health is changing. We are living longer and more of us will need care in the future. 

This will lead to an increase in the need for paid care services but will also require an increase in informal care because not all people who need care receive paid care, and some of those who do receive both formal and informal care. Joseph Rowntree Foundation (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, around a quarter accessed both formal and informal care and just under a fifth only accessed formal care.

Informal care is an inevitable part of how care needs are and will be met. Some of this is due to unmet need for paid care services or high costs but much is due to people choosing to care. JRF research found that, for people providing the majority of care for someone, 46% of unpaid carers and 40% of parents say their main reason is that they want to.

There are genuine benefits for cared-for people of drawing on informal care as some needs fall outside the routine of formal care services while carers can also help people access the right paid care services.

If the number of carers rise only in line with population growth, JRF analysis projects that by 2035 there will be an extra 400,000 people in the UK caring for the elderly, sick and disabled for 10 or more hours per week, an 11.3% increase compared to now. Of these new carers, 130,000 will be of working age.

If we include those caring for fewer than 10 hours per week, this figure rises to 990,000 additional carers, a 10.6% increase compared to now. 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.

We also found that rates of care intensity are changing, rates of very high-intensity care (35 hours+ per week) are higher in the UK now than 10 years ago, driven by more prevalent chronic and degenerative conditions and more people caring for working-age disabled people who need long-term care.

These changes point to a future where care needs are longer, more intensive and more complex. Focusing on expanding the availability and affordability of paid care services is important to meet growing and specialised needs – but this alone will not be enough.

In order to fit the right blend of informal and formal care to people’s individual needs the state needs to enable real choice in the system. This means taking action in 4 key areas:

• Paid care services need to be more available and affordable, particularly for those on low incomes and with few savings.
• Work should allow people to care, through flexible working or paid care leave.
• The benefits system for carers and parents should provide carers with the resources and dignity to do the job well.
• Social networks should be strengthened locally so people can more readily give and access ad hoc support in their community.

Supporting and incentivising unpaid care is especially important to support more people to be carers as changing gender and work norms mean that, rightly, we are moving away from the expectation that women are expected to be caregivers more so than men.

As people draw on multiple sources of care, policy-makers need to co-design and embed systems in one another. This means:

• seeing the availability and financial security of informal carers as a central plank of the National Care Service, and factoring in the role of local social networks in providing ad hoc physical and emotional support to personalise care
• Jobcentres giving support to carers who want to work, even for a few hours a week, and ensuring carer benefits do not penalise work
• supporting local carer organisations who can help carers access the benefits they are entitled to.

There is a structural obstacle to this kind of working in government currently where future care needs are planned for primarily by the Department for Health and Social Care focusing on the paid adult social care system, with financial support for unpaid carers primarily designed and delivered by other departments separately and with respect to a set of different departmental agendas.

The first step government should take to solve this and set into motion a new strategy for meeting these needs is to create a Future Care Needs Taskforce. This would be chaired by the Department for Health and Social Care with representatives from the Department for Work and Pensions, Department for Business and Trade, the Ministry of Housing, Local Government and Communities and the Department for Education. The taskforce would plan not only how to expand paid care services but also how to unlock the caring capacity of family and social networks through paid leave, more generous carer benefits and community support.

Globally we face a ‘crisis of care’ as ageing and changing demographics drive increasing care needs which governments are struggling to meet. These care needs can be met through a range of different services and support, such as paid, subsidised or free care services in a formal setting or in one’s own home. It could also include paid help like cleaners and handymen and informal support from family, friends and social networks. Not meeting these needs can have serious consequences — it can directly affect health and development for the cared-for person, and can also put pressure on adjacent sectors like health and the labour market.

In the UK we face this challenge too. Our population is getting older (Office for National Statistics, 2022) which means our health and care services are looking after people for longer than initially anticipated. We’re also seeing more working-age adults seeking formal care services, particularly adults with learning difficulties who need very long-term care (Hu et al., 2020).

An ageing population does not automatically mean a huge increase in the need for care. Research has found that older people are on average managing their conditions through the NHS (Raymond et al., 2021) without needing more formal care and recent generations seem to be healthier as they age (Kingston et al., 2022). Beyond adult social care, birth rates have been low in the last decade meaning there will be fewer young people to care for older people in the long term – but in the short term this can lead to a lower demand for childcare and primary school closures in some areas (Hackney.gov.uk, 2023).

The scale of change, however, points to the scale of the challenge. The Personal Social Services Research Unit (PSSRU) estimates that the number of disabled older people unable to perform at least one instrumental activity of daily living without help will increase by 69% between 2015 and 2040, from 1.7 million in 2015 to 3.0 million in 2040 (Wittenberg et al., 2018). They also estimate that the number of adults with learning disabilities, mental health problems and physical disabilities will increase (Wittenberg et al., 2018). The Care Policy and Evaluation Centre estimates, based on population trends, that 29% more working-age adults, and 57% more over-65s, will need care in 2038 compared with 2018 (National Audit Office, 2021).

The Health Foundation has estimated that the prevalence of conditions with high healthcare needs, such as dementia, heart failure and diabetes, will increase significantly by 2040. These are largely managed in primary care, driving up the demand for support from GPs and community health settings (Watt et al., 2023).

More people will need care in the future

Changes in the health of the nation will change the volume and type of care needs, and in turn, the demand for care.

PSSRU estimates that paid home care, residential care and physical support services in England will all face significant growing demand by 2040: numbers needing publicly funded home care are projected to increase by 87% compared with 2015, while residential learning disability care service demand could increase by 72.5% over the same period. Based on the projected growth of the over-65s population alone, Skills for Care estimate that the adult social care system in England will need 440,000 more paid care workers by 2035, a growth of 25% from current numbers (Fenton et al., 2023). Unsurprisingly this will incur a significant cost, with researchers estimating the total cost of paid care services could more than double by 2040 if needs were met (Wittenberg et al., 2018).

But paid care services are only one part of meeting care needs. There are an estimated 3.6 million unpaid carers in the UK providing care for more than 10 hours a week, this rises to 9.3 million if you include carers undertaking fewer hours of care a week. There are 7.2 million parents with dependent children in their household undertaking at least some unpaid care. This fundamental domain of caring meets the vast majority of care needs but receives much less attention in policy debates. These unpaid carers are usually women who have to leave the labour market to care and face a financial ‘caring penalty’ (Jitendra et al., 2023).

Care needs are growing and changing, but we are not currently meeting these needs, and we could struggle to meet them in the future without policy change. For paid care services, affordability and availability remain barriers to people taking up formal care, there are 400,000 people waiting for a care needs assessment or for their care to begin and the cost of care can be a strong disincentive to access it (ADASS, 2024).

High vacancy rates in the adult social care sector persist despite overseas recruitment (Bottery and Mallorie, 2024), and there are concerns that the planned childcare expansion will be scuppered by an inability to recruit workers (Hardy et al., 2023). There are also significant gaps in sufficiency of formal, paid childcare services, especially for children with special educational needs (Hodges et al., 2024).

Changing norms in gender and work

The number of people undertaking unpaid care, and their capacity to care, is also reducing. Historic gender norms mean women still make up the bulk of unpaid carers. Our analysis of Understanding Society data from 2010–2022 shows that in the UK women make up 61.8% of carers caring for more than 10 hours per week, with men making up 38.2%.

But these norms are, rightly, changing, there are more women in the labour market (Francis-Devine and Hutton, 2024), either because they want to work or because families today often need two incomes to prevent financial hardship and insecurity (Cribb et al., 2017). While labour market inactivity due to caring for an adult has remained broadly stable, it has reduced for those caring for a child, as more women are employed and birth rates have reduced in the last decade (Ring et al., 2024).

There are 2 actions policy-makers will need to take to meet the growing and changing demand for care. The first is trying to reduce the demand itself by helping people live healthier lives for longer: for example, while care needs in childhood and old age are inevitable, the severity of care needs can be reduced through interventions to reduce the prevalence of preventable diseases. This should be an important part of government policy but is not the focus of this paper.

The second action is to meet this demand, ensuring there is sufficient, appropriate care so care needs are met and managed. These can be met through paid support, such as domiciliary care, childminders and childcare providers, or through unpaid care in family or other social networks. There is ample evidence that paid care services will need to scale up to meet growing demand. Our analysis finds that there will also be an increase in the number of unpaid carers in our society, both working-age and older carers. The type of care people do is also changing, with more people caring full time, and for longer, as chronic and degenerative conditions increase in prevalence.

Millions of people are already having to make deeply personal and difficult decisions about how to meet their own or their loved one’s care needs, a decision often between a significant financial hit to draw on paid care services, or a significant financial hit for them or a loved one to leave work to care. As the health and makeup of our country changes, more of us will have to make these difficult decisions. The best way to give people choice and freedom is to ensure that both paid care is available and affordable, and that unpaid carers can live with dignity and financial security.

This is not the system we have today. Both our paid care systems and our support systems for unpaid carers are inadequate to meet the needs of current carers and cared-for people, let alone meet the growing and changing needs of a future where we live longer while having less time to care ourselves. Paid care services are often unaffordable, scarce, of variable quality and questionable value to the taxpayer, and face existential workforce pressures which disempower and devalue workers. We find that gender, demographic and working norms mean that we can be less sure there will be enough people willing to care themselves, particularly given the financial impact. There is already evidence that we are facing a shortfall of adult children caring for their disabled older parents (Pickard, 2013).

We have arrived at our current system after years of piecemeal improvements, and in some cases inaction. Changing the status quo will require government to use both old and new tools, improving systems independently while redesigning how they interact.

A whole system approach to meeting care needs

There are 4 key domains central to meeting current and future care needs, paid care services, the benefits system, job design and social networks, all of which need to be in the view of policy-makers. These need to be improved independently so each can be a strong pillar to support people who need and give care, but planned and designed together because the objectives with respect to supporting carers are shared.

This inter-relatedness arises from the reality and ‘lawlessness’ of health, and so should be designed into any policy response. But it also could be a positive characteristic of the system, because weaving together different elements of the system to support people is a better way of giving people care that actually meets their varied needs.

Paid care services are the subject of most of the debate about meeting increasing care needs. To do so, they will need to be available, affordable and appropriate — but right now they are marred by high vacancy rates and costs, delays and sufficiency gaps. In early years childcare, the Government is mid-way through a significant expansion of subsidised formal services where funding on the system will increase by 49% in just one year (National Audit Office, 2024).

In adult social care, progress has stalled on a new settlement to make care services more affordable. The Labour Government has ruled out planned reforms to put in place a lifetime cap on the cost of care, but has committed to mandating higher pay for care workers, which could drive up the supply, quality and availability (and potentially user fees). Labour has also promised to create a National Care Service, which could establish a national set of standards for the currently fragmented adult social care sector.

Meeting growing and changing care needs requires workforce strategies which drive up pay and conditions in paid care sectors, higher minimum standards in return for public funding, progress on expanding subsidies and a drive to make care appropriate and personalised for a range of needs. Taken together, these will give many more people the choice and incentive to take up formal care services and move the burden of care from individuals and households to providers and the state.

The benefits system supports a huge number of people doing unpaid care, including unpaid carers of sick, elderly and disabled people and parents with dependent children, to replace some lost wages and help cover the additional costs of caring. Most parents receive Child Benefit, while low-income working-age households receive additional support through the Universal Credit child element and Child Tax Credits. Universal Credit varies depending on an individual’s income. Unpaid carers receive Carer’s Allowance, while the poorest can claim Universal Credit and Pension Credit with additional carer top-ups. The number of people caring on Universal Credit and carer benefits is forecast to rise (Department for Work and Pensions, 2024).

Despite this, families with children and unpaid carers are disproportionately more likely to be in poverty than the general population (JRF, 2024) and unpaid carers increasingly feel unable to look after their own wellbeing (NHS England, 2024). Labour’s promise to refocus the Jobcentre Plus to support people into work is welcome, as is the Government’s commitment to a child poverty strategy, broader review of Universal Credit, and action to tackle overpayments under Carer’s Allowance. However, the growing number of long-term, high-intensity carers means more people will be relying on the benefits system for longer while they care, and incomes need to be adequate to prevent them falling into poverty. At a minimum, the benefits that carers rely on should cover the costs of essentials and additional costs associated with caring. This means reviewing the value of the Universal Credit standard allowance and child elements, and Carer’s Allowance and carer top-ups to means-tested benefits like Universal Credit, Income Support and Pension Credit.

Increasingly, work and job design play a crucial role in enabling, or preventing, people from making the right choice about whether to care themselves or not. While there is some support available to help parents balance work and care — namely flexible working arrangements and paid parental leave — these are insufficient, with low take-up of shared parental leave and a culture of work where flexible working is not built into job design. There is significantly less support for people caring for elderly, sick or disabled people, beyond voluntary compassionate leave from employers and a new entitlement to 5 days of unpaid care leave. We know there is a significant financial penalty for people leaving work to care, with mothers facing a pay penalty of over £21,000 six years after leaving work to care, and unpaid carers facing a pay penalty of nearly £8,000 after the same period.

Some change has already been promised, Labour has committed to making parental leave a day one right for new workers and flexible working a default, and want to establish a Fair Work Agency to enforce employment rights. This will be an important first step, but without an expanded paid care leave offer, people will find themselves foregoing significant amounts of pay and risk facing poverty. JRF has called for a new Statutory Care Pay entitlement to be created, which would cover a proportion of a worker’s pay for 9 months over the course of their working life while they cared full time, and has also called for an increase in generosity in paternity leave. There should also be a long-term ‘right to return’ entitlement which allows people to take 12 months of unpaid leave with a guarantee of returning to their old job.

Finally, social networks and other support offers crucial, often hidden support for cared-for people. Grandparents can be a crucial help to keep paid childcare costs down. We found that services like cleaners and handymen met care needs instrumentally, despite them not being seen as ‘paid care services’. Social networks like neighbours and friends can also meet these needs and help cared-for people remain connected and offer emotional support. But these relationships can arise at random and some, like renters who are not rooted in place, families who live far from other relatives, or elderly people with mobility issues who do not socialise often, are not able to rely on these networks.

Hilary Cottam sets out one way the state could seek to engender and amplify these relationships, by creating ‘circles’ of neighbours who offered to help people needing support in their local community, from help around the house to picking people up from hospital appointments. Anyone could be a member and offer help, including people needing help themselves. Operating in 10 areas with 10,000 people helped, these groups seemed to have an impact on the wellbeing of the community, with a significant reduction in local hospital admissions (Cottam, 2018). Apps like NextDoor, where neighbours can share tips and sell unwanted items, or jointly, where carers caring for the same person can coordinate, point to digital tools which could build and sustain these networks. To really make an impact, local government should support and seed local networks of this kind.

Embedding and co-planning system change

We draw upon different kinds of care to meet our care needs and require a range of support to meet complex and sometimes changing needs, yet systems themselves do not often interact. Figure 9 sets out how these systems could inter-relate more dynamically.

This section is a summary of the assumptions and approaches used:

• definitions for the key variables from Understanding Society dataset
• rationale for the projections of carers in 2035, including methods discounted in favour of the chosen approach.

Definitions from variables using Understanding Society (USoc)

• We define higher intensity unpaid carer as anyone who cares for someone inside (aidhh) or outside the household (aidxhh) and cares for 10 hours or more (aidhrs), and also excluding the category 'Varies, but under 20 hours'. We chose not to apportion respondents of this group proportionate to the other 0-20 hours groups.
• Unpaid carer is defined as anyone who cares for someone inside or outside the household and cares for any number of hours.
• We create a custom cross-sectional weight conditional to each wave of the survey to account for the different weighting variables. We use cross-sectional weights as we want proportions at the time of response and are not tracking respondents across the waves.
• We also created custom demographic variables for ethnicity (racel_dv), sex (sex_dv), and age band (dvage). 
• We use jbstat to understand work status at the time of wave. We align employment with FRS and consider employment to include parental leave, temporary working arrangements and apprenticeships.
• We define 'parent' using the nchresp variable. We use this variable as a proxy for intensity, as this variable denotes responsibility for children where nchild_dv does not. We recognise the limitations of this chosen variable due to it defaulting to female caregivers.
• We define needing formal help as being 65+, having an ADL or IADL (adla-adln) and accessing formal care services (hlpforma – hlpformb). We consider conventional formal care to include support from a home care worker, care staff team or nurse. We consider unconventional formal care to include sheltered housing manager, cleaners and other groups.

We use additional datasets to support our findings from USoc, in most cases where we were unable to find the right data in USoc or where sample sizes are too small or where we did not need 13 years of data.

• We use the Department for Education’s Parents Survey, Additional Tables for data on usage of formal childcare for 0-14 year olds.
• We use ONS Time Use Survey data to illustrate time spent on childcare by sex.
• We use the NHS Personal Social Services Survey of Adult Carers in England for 2023-4 to find out what illnesses unpaid carers primarily supported people with.

Projections

In order to project numbers of future carers, we combine USoc data for our definitions of carers with ONS population estimates and projections.

We first calculate weighted proportions of unpaid caring by 5 year age band and sex in each wave of the USoc data, and match this to ONS population estimates data using the nomis data portal. We add to this the ONS’ principal projections data (ukpppsumpop) forward to 2035.

We then calculate care rate averages by age band and sex for the 13 years of USoc data, and apply these averages to the population estimates and population projections data to get a smoothed set of population numbers of carers by age band and sex from 2010-2035.

Our approach leads us to a conservative and largely population driven increase in the number of unpaid and higher-intensity carers.

Amongst the considerations for projecting number of carers forward were more formal modelling approaches. One used a basic time series forecasting approach, using a Damped Holt method to estimate the care proportions per age band and sex to 2035, using the trends in the previous 13 years of data. This approach was discounted because the yearly variance in care proportions by age band and sex created a large confidence interval for the central forecast.

The second method we considered was fitting an ARIMA model to the care proportions, using age band, sex and population estimates as external regressors, to forecast future values of care proportions up to 2035. This approach was discounted as we were not confident that our choice of regressors fully captured the complex relationship between care proportions and the population.

The choice to explore alternative modelling approaches stemmed from our understanding of the importance of time to caring, per the age bands, sex and population. In future we may explore this option further.

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