Caring Through Cancer: Carers' Hours, Health and the Gaps in Support

Many people with cancer rely on unpaid care from a partner, relative or friend. In the United States alone, at least 2.8 million people were estimated to have cared for an adult with cancer in the year before a 2015 national survey, averaging about 33 hours a week. Pooled studies from many countries find symptoms of depression in roughly a quarter to over four in ten of these carers, and many cut their working hours. What carers most often say they lack is information, training and support that services could provide.

Caring for someone through cancer often means learning to manage medicines, drains or feeding at home, travelling to appointments, speaking up in clinics, keeping a household and a job going, and doing all of this while worried about someone you love. Health systems increasingly rely on this unpaid work, especially as more treatment moves out of hospital. Yet carers are rarely counted in national statistics, seldom assessed in their own right, and often left to work out complex tasks alone. This study brings together the best international evidence on how many people care, what it costs them in health, work and money, and what they say they are missing. Most of the data come from the United States, the Nordic countries and China, and we say so where it matters.

Millions of people care, often for more than 30 hours a week, and few statistics count them

We found no global count of people caring for someone with cancer. Most estimates come from surveys, and the best-documented is from the United States. The National Alliance for Caregiving, working with National Cancer Institute (NCI) researchers, analysed its nationally representative Caregiving in the U.S. 2015 survey (fielded in late 2014) and estimated that at least 2.8 million people in the US had provided unpaid care for an adult family member or friend with cancer in the previous 12 months^[1][2]. It is a survey-weighted estimate (about 7% of an estimated 39.8 million adult carers), not a register count, and now more than a decade old. The cancer-specific findings below rest on 111 respondents caring for someone with cancer against 1,164 caring for someone with another condition, so each percentage carries wide uncertainty^[2].

The same survey found that cancer carers gave more hours than other family carers: 32.9 hours a week against 23.9 hours. Sixty-two per cent were in the survey's most intensive care category, defined by weekly hours and help with daily activities such as bathing and feeding, against 38% of carers of people with other conditions^[1][2]. Cancer caregiving tended to be episodic, lasting about two years on average (1.9 years against 4.1 years for other carers)^[2], and NCI's professional summary of the same analysis adds that half of cancer carers were in paid work at the same time, working an average of 35 hours a week^[4].

Cancer carers were also more likely to advocate for the person they cared for with health providers, community services and government agencies (62% against 49%), and almost twice as likely to say they needed help or information with end-of-life decisions (40% against 21%)^[1][2].

Families with children are part of this picture too. Using the US National Health Interview Survey for 2000 to 2007 (13,385 adults with a history of cancer), Weaver and colleagues estimated that 14.0% of adults living after a cancer diagnosis lived with a child under 18, rising to 18.3% of those diagnosed within the previous two years. Weighted to the US population, that meant about 1.58 million parents with a history of cancer living with 2.85 million children, including an estimated 562,000 children living with a parent in the early phases of treatment and recovery^[5]. Those children are seldom counted in service planning, though support for them depends on the same stretched parents.

Outside the US, carer numbers are mostly charity-commissioned survey estimates; we could not check a current UK figure at source, so we have left it out.

Around a quarter to four in ten carers show signs of depression, and diagnosed mental illness rises after a partner's diagnosis

Three meta-analyses have pooled screening-questionnaire studies of depression in carers of people with cancer, from many countries. They differ in which studies they included, which is why their figures differ:

• Geng and colleagues (2018) pooled 30 studies covering 21,149 carers and found a prevalence of 42.30% for depression and 46.55% for anxiety^[6].
• Bedaso and colleagues (2022) pooled 35 studies with 11,396 participants and found a pooled depression prevalence of 42.08%^[3].
• Pan and Lin (2022) pooled 85 studies covering 23,317 carers in 25 countries, published 2001 to 2021, and found a weighted average depression prevalence of 25.14%^[7].

These are mostly cross-sectional surveys using symptom scales, so they measure symptoms at one point rather than diagnosed illness, and the studies vary widely in quality and setting. A fair reading is that somewhere between a quarter and four in ten carers have significant depressive symptoms. Figures for single cancers fall in a similar range: a 2022 systematic review of carers of people with pancreatic cancer (nine studies, 6,023 carers) reported clinical levels of anxiety in 33% and depression in 12% to 32%, though it rated three of its four quantitative studies as poor quality^[8].

Stronger evidence that the strain is real, and not just a feature of who answers surveys, comes from national registers. Hu and colleagues followed 546,321 spouses of people diagnosed with cancer in Denmark (1986 to 2016) and Sweden (1973 to 2014), comparing them with 2,731,574 spouses of people without cancer, none of whom had a previous psychiatric diagnosis^[9]. In the first year after their partner's diagnosis, spouses had a 30% higher rate of a first psychiatric disorder diagnosed in hospital-based inpatient or outpatient care (adjusted hazard ratio 1.30), a 38% higher rate of depression (1.38) and roughly double the rate of stress-related disorders (2.04). Over the whole follow-up the raised rate was smaller (1.14). It was higher when the cancer had a poorer outlook, such as pancreatic cancer (1.41), when it was diagnosed at an advanced stage (1.31), and when the person with cancer died during follow-up (1.29). In absolute terms, first psychiatric diagnoses ran at 6.8 per 1,000 person-years among exposed spouses against 5.9 among the comparison group, so most spouses did not receive a diagnosis; the study shows a measurable rise, not an inevitability.

The sharpest rise is in the first year, when the person with cancer is in the most intensive phase of diagnosis and treatment and the family is in contact with cancer services most often. That is the window in which a carer's own needs could most easily be noticed. Mental health for people with cancer themselves is covered in our sibling study on cancer and mental health.

Caring costs carers paid work and income, most heavily during treatment

Hours of care have to come from somewhere, and for working-age carers they often come out of paid work. In the US, the same National Alliance for Caregiving analysis found that 25% of cancer carers reported high financial strain and 50% high emotional stress (a rating of 4 or 5 on a 5-point scale)^[2][4].

A study from China gives a clear picture of how work changes over time. Among family carers of 1,155 people living after cancer (the study's long-term survivors), as reported by the people they cared for, 45.6% had reduced their working hours and 17.4% had stopped working altogether during primary treatment. After treatment, 25.2% were still working fewer hours and 6.6% had left the workforce completely^[10].

Using a different US national survey of carers, from 2003 to 2006, whose figures are not directly comparable with the 2015 survey above, Yabroff and Kim found that carers gave on average 8.3 hours of care a day for 13.7 months, with the longest and most intensive care for people whose cancer had spread to distant sites. Valuing those hours at the 2006 US median wage, the estimated value of carers' time over the two years after diagnosis ranged from $38,334 for breast cancer to $72,702 for lung cancer^[11]. These are modelled values of unpaid time, not cash spent, and older dollars, but they show the scale of work that health systems receive without paying for it. The wider money and employment effects for people with cancer are covered in our sibling study on money and work after a cancer diagnosis.

Carers' most common unmet needs are information, emotional support and being included in care

When carers are asked what they lack, the same themes recur across studies. A systematic review by Lambert and colleagues grouped unmet needs reported in 29 studies of partners and carers of adults with cancer into six domains. They included needs about comprehensive cancer care (reported by between 1.1% and 96% of carers, depending on the study and item) and emotional and psychological needs (3% to 93.2%)^[12]. The very wide ranges reflect different questionnaires and settings, so they show which needs recur rather than a single prevalence.

In advanced cancer, Wang and colleagues reviewed 50 studies and identified seven domains of unmet need among informal carers. Needs for information about the illness and its treatment were reported by between 26% and 100% of carers across studies^[13]. NCI's evidence summary describes what carers say they want: recognition of their role, information about treatment and likely outcomes, guidance on changes in the person's health, support for coping with stress, and training for the medical tasks they are asked to do at home^[4].

These describe a gap between the work that cancer care now expects families to do and the preparation and recognition families receive for it. NCI's summary notes that, ideally, a comprehensive carer assessment should take place at diagnosis, at emergency presentation and at major transitions in care, and that carers' needs should be assessed separately from the patient's, because the two do not always identify the same challenges^[4].

Support for carers can help, but services reach few of them

Support for carers helps, modestly. A meta-analysis of 29 randomised trials published between 1983 and March 2009, testing three types of intervention for family carers of people with cancer, found that they had small to medium positive effects for carers^[14]. NCI's summary of the same meta-analysis puts the effect on carers' strain at a small g = 0.22 (11 studies), with a larger effect on ability to cope (g = 0.47 at three months) and no significant effect on depression, and calls the efficacy of carer interventions overall mixed^[4]. The carers in those trials were mostly women (64%) and mostly white (84%), with a mean age of 55^[14], so the evidence says little about carers from other groups.

At the end of life, support for families is built into the definition of good care. The World Health Organization describes palliative care as a team approach that supports patients and their caregivers, including practical needs and bereavement counselling. Yet WHO estimates that only about 14% of people worldwide who need palliative care currently receive it^[15], which means most families caring for someone at the end of life do so without that team behind them. Place of death and access to palliative care are covered in our sibling study on end-of-life and palliative care.

What the evidence asks of us

The figures point to a few practical changes, none of which asks families to do more:

• Count carers. Few national statistics can say how many people care for someone with cancer, or for how long. National carer and health surveys could record the condition of the person cared for, and cancer services could record who the main carer is, so that the work families do is visible in planning.
• Assess carers in their own right, early. The register evidence shows the steepest rise in spouses' psychiatric diagnoses in the first year after diagnosis^[9], and NCI's evidence summary describes assessing carers at diagnosis and at major transitions, separately from the patient^[4]. That is when families are most often in contact with cancer teams.
• Prepare carers for the tasks they are given. Information about the illness, its treatment and what to expect is among the most consistently reported unmet needs^[12][13]. If care at home depends on families, training for that care belongs in the treatment plan.
• Protect carers' work and income. Large shares of carers cut or leave paid work during treatment^[10]. Carer leave, flexible working and income support are policy choices, and the Chinese data suggest they matter most during treatment.
• Fund support that has been tested, and test it more widely. Trials show small to medium benefits from carer interventions^[14], but the carers in them were mostly women and mostly white. Funders could support trials with men, minority ethnic carers, young carers and carers in low- and middle-income countries.
• Make family support part of palliative care everywhere. WHO's definition of palliative care includes support for caregivers and bereavement counselling, and the World Health Assembly (resolution WHA67.19) called on member states to improve access^[15]. With only about 14% of people in need receiving palliative care, most families are still waiting for that promise to reach them.

Language: this piece says "people with cancer" and "people living with and after cancer", and describes the illness and its treatment plainly, without combat metaphors. Clinical terms such as "stage", "incidence" and "net survival" are used in the sense the cited source defines them.

Why we're publishing this

Carers are often the last people anyone asks about. Charities, hospices and carers' organisations see the strain every day, but they are frequently asked for numbers to back it up. This study gathers the published evidence in one place, with every figure traced to its source, so that the case for carer support can be made on the data. The difficulty described here sits in how services are designed and funded, not in the people being cared for, and not in the families who care for them. It sits alongside the wider cancer research library.

How to read this data

Carer numbers here are survey-weighted estimates: the US figure of 2.8 million comes from a 2015 survey in which 111 respondents were caring for someone with cancer, and the estimate of children living with a parent with cancer from survey data for 2000 to 2007. Neither is a register count and both are dated. The depression figures come from meta-analyses of mostly cross-sectional questionnaire studies; they describe symptoms on screening scales at one point in time, not clinical diagnoses, and the studies differ in quality, country and setting. The Danish and Swedish register study counts only diagnoses made in hospital-based specialist care, so it misses distress that is never diagnosed or is seen only in primary care, and its hazard ratios compare rates between groups rather than giving any individual's risk. The value-of-time figures are modelled from wages in 2006 US dollars. The employment figures from China come from one study population, reported by the people with cancer rather than the carers. The evidence gathered here comes mainly from the US, Denmark, Sweden and China; we found little population-level data on carers in low- and middle-income countries.

Use this data

Free to cite with attribution to Better Health For Everyone. Charities, campaigners and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Important: This article summarises published research for general information. It is not medical advice and cannot be used to diagnose, treat or predict anything about an individual. If you have concerns about your own or someone else's health, please speak to a qualified health professional.

Sources

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2. National Alliance for Caregiving, in partnership with the National Cancer Institute and the Cancer Support Community. Cancer Caregiving in the U.S.: An Intense, Episodic, and Challenging Care Experience (analysis of 111 cancer caregivers and 1,164 other caregivers in the Caregiving in the U.S. 2015 survey; PDF). National Alliance for Caregiving, 2016. caregiving.org/wp-content/uploads/2022/11/CancerCaregivingReport_FINAL_June-17-2016.pdf
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