India’s health system is usually discussed in terms of hospitals, doctors, nurses, medicines, insurance, and government budgets. All of these matter, but, as a paper by Yan and others (https://doi.org/10.3389/fpubh.2025.1666386) demonstrates, another part of the health system is almost always present yet rarely seen clearly. This is the family caregiver.
This is reflected most commonly in health systems having thoughtlessly adopted the word ‘Bystander’ into their lexicon when referring to caregivers – a dismissive word that relegates them to passive observers, when in reality they do the heavy lifting.
A caregiver may be a daughter who keeps track of her mother’s medicines, a husband who brings his wife back for follow-up after childbirth, a grandmother who helps care for a newborn, a parent supporting a child with disability, or a neighbour who helps an older person reach a clinic. In India, such caregiving is not exceptional. It is part of how care actually happens. One estimate suggests that India may have about 275 million caregivers, roughly one-fifth of the population. Yet most of them remain informal, unsupported, unpaid, and often untrained.
Many essential tasks can be supported safely by families: recognising warning signs, maintaining medicine adherence, helping with feeding and hygiene, preventing bed sores, supporting mobility, preparing for emergencies, and communicating better with providers.
This matters because the contact between a patient and the formal health system is often very brief. A doctor or nurse may have only a few minutes to explain a diagnosis, a medicine schedule, warning signs, diet changes, rehabilitation steps, or when to return to the hospital. Once the patient goes home, the family must carry the responsibility. When this is done without preparation, families can become anxious and overwhelmed. They may miss danger signs, misunderstand instructions, or delay seeking care. This is not because they do not care. It is because we have expected them to perform care work without treating them as part of the care team. This is reflected most commonly in health systems having thoughtlessly adopted the word ‘Bystander’ into their lexicon when referring to caregivers – a dismissive word that relegates them to passive observers, when in reality they do the heavy lifting.
The solution is not to shift all medical work onto families. Complex clinical tasks must remain with trained health workers. But many essential tasks can be supported safely by families: recognising warning signs, maintaining medicine adherence, helping with feeding and hygiene, preventing bed sores, supporting mobility, preparing for emergencies, and communicating better with providers. These are not small things. They can decide whether a patient recovers well, returns to the hospital unnecessarily, or deteriorates at home.
A trained caregiver can observe changes, ask better questions, follow instructions more reliably, and help prevent avoidable complications. The health worker remains central, but the family becomes a better partner.
Some Indian organisations already show what is possible. Noora Health’s Care Companion Programme trains patients and family members in practical, culturally appropriate skills, often before discharge from public hospitals. Pallium India has developed training material and videos to support home-based and palliative care. Caregiver Saathi works on the emotional and identity burden of caregiving. Nayi Disha helps families of children with developmental disabilities find information, rights-based guidance, and peer support. Kerala’s palliative care experience shows how community volunteers can reduce isolation and support families. These examples are different, but they point in the same direction: caregivers do better when they are recognised, trained, connected, and supported.
This also has implications for health workers. Supporting caregivers should not be seen as adding another burden to nurses, doctors, ASHAs, or community health workers. Done well, it can make their work easier. A trained caregiver can observe changes, ask better questions, follow instructions more reliably, and help prevent avoidable complications. The health worker remains central, but the family becomes a better partner.
The first step is a change in imagination. We should stop seeing the patient’s family only as visitors, attendants, or bystanders. They are often the ones who keep care going. If we train them well, protect them from overload, and respect their role, they can become a quiet but powerful extension of the health system.
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The second step involves formalising family caregivers’ roles, an approach that can help reinforce several of the World Health Organization (WHO) Health System Building Blocks (https://l1nk.dev/gsnd6l2). However, there is also a gender concern that cannot be ignored. Much unpaid care work is done by women. Formal recognition of caregivers must not simply make women’s invisible labour more demanding. It should reduce burden, share responsibility, provide practical help, and, where appropriate, offer financial or social protection. India already has small examples, such as support for households using life-sustaining devices and caregiver payments for selected conditions. These need not be designed as welfare alone. They can be linked to health system goals, especially where caregiver support prevents complications, readmissions, or avoidable institutional care.
India does not need to wait for a perfect health workforce before improving care. It can begin by strengthening the people who are already caring.