At 40, Shanti (name changed for privacy) imagined she would have had 2 children, one boy and one girl, and a small house to call her own. However, after years of struggle with infertility, which led to an ovarian cancer diagnosis, she found herself alone. Her husband left her soon after, and the responsibility of caregiving was picked up by her 30-year-old sister, Ruchi*.

What followed were months of hardship that involved navigating appointments, chemotherapy, a newly diagnosed acute hep B infection, surgery, and hormone therapy. 

This story is not an isolated incident but a stark illustration of a growing crisis in India. The burden of caregiving, often shouldered by informal caregivers such as a sister, son, or daughter, is a complex problem with far-reaching consequences. 

Over the past two decades, the average age of the Indian population has increased from 62.7 to 72.2. India’s elderly population, i.e, above 60 years, is estimated to be nearly 16 crores. Globally, India ranks second in the percentage of the total population above 65 years of age. Besides a growing elderly population, non-communicable diseases are also on the rise. This increased disease burden increases the demand for ‘caregivers’,  foreshadowing an increasingly complex problem known as ‘caregiver burden’. 

WHO defines caregiver burden as “the physical, emotional, and financial stress experienced by those providing care to others, especially those with chronic conditions or disabilities”.

In India, caregiving is substantially informal. There is a high out-of-pocket expenditure (OOPE) on medical care in India owing to inadequate insurance coverage and a lack of robust public health infrastructure. India lacks a robust formal care infrastructure, including skilled nursing facilities, extended care facilities, and acute rehabilitation centers, thereby shifting the burden of care onto family members.   

Disproportionate Burden on Women

At 30, Ruchi did not envision her life as a caregiver. The constant stress, the countless hours spent in the hospital, and the diversion of funds to her sister's medical bills took a heavy toll on her relationship, leading to her divorce. Beyond this emotional loss, Ruchi also faced a crippling financial burden. A decision borne out of love and an innate sense of responsibility had jeopardized her own future and security. 

Ruchi's personal story is a representation of a much wider, systemic issue. The burden of caregiving is shouldered disproportionately by women. An International Labour Organization (ILO) report found that in 2023, 748 million people aged 15 and above were outside the labor force due to care responsibilities, including the care of those diseased and/or disabled.

The majority of these were women (708 million). This gender disparity is especially prominent in Southern Asia, where 74% of prime-age (i.e., 25 to 54 years old) women were outside the labor force because of care responsibilities. The disproportionate burden of caregiving on women reduces their participation in the labor force and affects career growth, heightening gender disparities. 

Consequences of Caregiver Burden 

Caregiving is highly demanding, leaving caregivers with less time to look after themselves. They face increased physical stress and are more likely to have chronic diseases such as hypertension. Caregivers, especially women, often struggle with guilt when prioritizing their well-being over that of their sick loved one, leading to great psychological strain as well.

Additionally, caregivers often have to act as surrogate decision-makers, which exacerbates their psychological stress. (ref) (ref) Caregiver burden often manifests psychologically as depression and anxiety. Women caregivers in particular have been found to have greater suicidal ideation, hopelessness, doubts in their caregiving abilities, social isolation, and somatic symptoms associated with distress.

Given the limited awareness of mental health disorders within the general population, caregivers in India are particularly disadvantaged in recognizing their psychological challenges and in accessing necessary support. 

Caregivers, especially women, often have to leave their jobs, resulting in a loss of income. A study from rural Tamil Nadu estimated that informal caregivers spend close to 40 hours a week on caregiving. This increases the financial burden associated with chronic diseases and can lead to mounting debt and impoverishment. 

Addressing Caregiver Burden 

Caregivers need formal recognition, given their unique needs and health concerns. Across the world, caregivers are getting formal recognition through legislation such as the Care Act 2014 in England and the Carer Recognition Act in Australia. These Acts recognize carers’ rights, including their right to assessment and support, and empower local authorities to provide assistance to both patients and their carers. There is no formal legislation in India recognizing the rights of caregivers. 

Some countries have implemented official allowances for caregivers as well. For instance, in the UK, carers can get £83.30 a week (~ 10,000 INR) if they’re caring for someone entitled to certain benefits for 35 hours a week. Caregiving of disabled individuals is primarily the responsibility of the public health system, which is being offloaded by caregivers. Caregivers should receive support in proportion to the amount they serve the system.

 The Rights of Persons With Disabilities Act (RPwD), 2016, has a provision for carer allowance for persons with disabilities with high support needs, but this has not been strictly implemented in all states of the country. Last year, Karnataka implemented an allowance of INR 1000/month to carers of people with cerebral palsy, muscular dystrophy, Parkinson's disease, and multiple sclerosis, a step in the right direction.

Various interventions have been found to reduce caregiver stress, facilitating their health. These include comprehensive counseling sessions, support groups, home visits by social workers, adult daycare services, and even socially supportive phone calls. Group-based educational interventions have found utility in other low-middle-income countries, such as Egypt.

Psychoeducation of groups of caregivers, along with supportive sessions, has been found to reduce caregiver burden. Home-based palliative care programs have also been shown to improve caregiver satisfaction and reduce burden. Advanced care planning can also help reduce the psychological burden associated with decision-making. 

These interventions have received limited attention in India. A study conducted at the Schizophrenia Research Foundation found that a support group program was effective in fulfilling caregiver needs by providing information and peer support. Training courses are available for caregivers in the country, such as one by the Rehabilitation Council of India.

A study conducted in Goa found that Home Care Programs, mobilizing locally available community resources, can help address the burden of caring and improve caregiver mental health. Home-based palliative care services have been attempted through the Neighbourhood Network of Palliative Care in Kerala and in Tamil Nadu via the Makkalai Thedi Maruthavam scheme. However, these interventions are few and localized to only certain parts of India. There remains a need for more evidence on the efficacy of these interventions in different sociocultural contexts of the country. 

At a broader level, it is important to recognize the patient and their caregivers as partners in providing care. Caregivers are not only in need of help and care but also important constituents of the public health system. Therefore, training of healthcare workers in supporting caregivers is incorporated in the curriculum.

This can be through training in assessing home care settings, understanding and assessing caregiver burden, and ameliorating it when necessary. Additionally, more population-based research is needed to understand caregiver burden as a public health concern, specifically concerning India’s cultural context. Developing effective strategies to address caregiver burden will be impossible without such research. 

In the end, the long road to recovery is as much Ruchi’s journey as it is Shanti’s. Life will never return to what it was for either of them. Ruchi, too, had imagined kids and a small house of her one. All her dreams and aspirations are kept on hold as she nurtures her elder sister back to health.

“If I don’t care for my sister, who will? I feel scared thinking about the future, but right now, I need to hold her hand. If I were in her place, she would do the same for me”, Ruchi once confided. This is the quiet reality of millions of caregivers. Nearly everyone in this world will both give and receive care at some point in their lives.

The demands of caregiving touch every aspect of health - physical, mental, emotional, spiritual, and social. As such, the well-being of caregivers must be an urgent concern of every person in the country.

Edited by Christianez Ratna Kiruba