All people are carers, in some way or for some time. Routine caring is innate—we raise children, tend to sick relatives, look after aging parents, form bonds of love and friendship that hold caring as implicit. However, among us—we, the general carers—is a critical population of more specialized carers. They devote their lives to helping others navigate chronic illness, disability, or age. Such carers exist everywhere, says Anil Patil, founder of Carers Worldwide, but rarely are their contributions recognized and their own needs met. He explains to Ashoka’s Chris Cusano why now is the moment to recognize their contributions.
Chris Cusano: Who are we talking about when we talk about carers?
Anil Patil: First of all, caring is universal. All of us, one or the other day, will either become a carer or will be cared for by somebody else. There is no one-size-fits-all description. Whether you are rich or poor, it doesn’t discriminate; whether you are prime minister or president, you too will be a carer; it doesn’t discriminate between scientist and singer. It affects each one of us.
We are talking about those informal, unpaid, carers—typically family members but not always—who commit a significant portion of their lives to look after another’s additional needs. This devotion can come at high cost. Carers’ own health and well-being may suffer; they may forego paid work outside, skip school, fall into debt, lose contact with their community and become isolated. They form an invisible population.
They may not have gone to universities. They may not know how to read and write, but they know how to care. Can we recognize that? Can we appreciate that? And to the patient, those millions of cared-for persons, the carer is indispensable— the daughters, mothers, husbands, grandmothers, friends, neighbors who make each day possible.
Carers’ participation in the formal healthcare system is crucial. The doctor prescribes a pill, but at home who reminds the patient and brings a glass of water? Who brings the patient to the doctor in the first place? Carers are the unpaid, frontline army.
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Cusano: Is it possible to estimate the value of informal caring?
Patil: We can see that worldwide, in economic terms, this is an issue of structural importance. Some countries have begun to tally the contributions of informal carers, others have not. The results are telling. For example, there are more than 6 million carers in the UK; that is, roughly one person in eight has some informal caring duties. The government calculates their contribution at 134 billion pounds, more than the National Health Service budget in 2017. A recent European Quality of Life Survey reported 20% of that population takes part in informal care. An OECD study found that over 10% of adults over 50 take on a caring role. Approximately two-thirds are women with the number of male carers slowly increasing. Although we don’t have numbers for every country, we can expect carers to similarly factor into the economy, because the same basic pattern exists virtually everywhere. And the current global Covid-19 pandemic can only increase demand.
Cusano: What’s happening in South Asia, where Carers Worldwide runs programs today?
Patil: Similar to many parts of the world, South Asia is just beginning to recognize its carers. In India, Bangladesh, Nepal, the socio-economic conditions are changing rapidly. Large, extended families are eroding into nuclear families, which affects the culture of care.
Consider the scale: If we apply that European number of 20% to India, we would find 273 million carers! Already, there are 100 million Indians over the age of 60. It is natural that eventually many of them will require care. We could see a fourfold increase in demand for carers by 2030.
Cusano: What have you learned from your direct work with carers?
Patil: Carers Worldwide works with more than 70,000 carers and family members, largely through programs and services delivered by local partners. By the end of 2030, we plan to reach 10 million through a combination of programs and policy change in the countries where we work, changing whole systems and their approach to care.
We have come to understand carers’ unmet needs. Carers often pay a high price: lost income, missed education, neglected health and well-being, financial security, growth and happiness. One common need was time off—many family carers have never taken a holiday and don’t have regular breaks. Through our partner organizations, we have found solutions for them.
However, carers are also very proud of the service they provide to their loved one—there is not only need, but also great strength, courage, creativity, skill, and potential.
We also have the issue of young carers, who risk their own futures. We work with more than 300 young carers–97% are girls. We can infer that there must be invisible young carers everywhere—it’s a global issue. Five years ago, all of the young carers we identified had dropped out of school. I’m very happy to share that all of them are back to school full-time. To provide local, alternative, care options to help these children and other carers, we promoted 22 community caring centers. Now young carers are able to go back to school and adult carers can engage in paid work or have a break from caring.
Cusano: What does it mean to “put carers on the global agenda”?
Patil: The status of carers is a human-rights issue, one which nobody is talking about. Eventually, we would like to see family carers considered in the vision, mission, program, and budget of every organization involved in public health and related fields. That is a message for both public agencies and international funders. If, for example, the WHO were to require that funding recipients include carers in their plans, the issue would become prominent.
In fact, the world already takes action in many situations where a carer is present, but perhaps unrecognized: disability, senior care, child-care, recovery and rehabilitation. How can they adopt this perspective on carers? Can they take a moment to ask the carer in the room, How are you doing? What do you need? Can they deliver their service better by more actively supporting the carer?
And this is also a matter of economic policy. Is carer a recognized occupation? How many informal carers are there? Which policies help and which hurt? In India, we have gotten the role of carers recognized in two crucial laws, the Rights of Persons with Disabilities Act of 2016, and the Mental Health Act of 2017. Both, for the first time, recognize support to carers. They are now, in principle, eligible for social security and other programs. The status of carers requires a transformation at this level.
Can we adapt our old frameworks to include the reality of carers? It is a global question. Their voices must be heard and included in their own right.
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