Over the years, as Allen P Ugargol, professor of practice, public policy, Indian Institute of Management Bangalore (IIM-B), Bengaluru, conducted his field-based community research projects on older adults, he always found that family caregivers for the elderly were primarily women. “Precisely it’s the daughters-in-law and spouses,” Ugargol told Happiest Health while recalling his experience of interviewing 24 households from Kerala’s Kottayam in 2015.
The interviews were part of ‘Family caregiving for older adults: gendered roles and caregiver burden in emigrant households of Kerala, India’, a 2018 research paper that was published in the journal Asian Population Studies.
The research paper was a collaborative work by Ugargol with Ajay Bailey, professor of social urban transitions from Utrecht University in the Netherlands.
“I have done several field-based community research works on elderly and their family caregivers in Goa and Kerala,” said Ugargol, a public health professional and demographer. “My research works specifically looked at the issues faced by older adults and their caregivers. For example, how daughters-in-law take on/are compelled to take on these filial caregiving duties when adult sons migrate/live away for employment/education.”
His research line focuses on the interdisciplinary crossroads of demography, public health, gerontology and healthcare management by blending quantitative and interpretive approaches.
Kerala has the maximum proportion (16.5 per cent) of elderly people in its population across India and Goa has 11. 2 per cent, as per the National Statistical Office (NSO)’s ‘Elderly in India 2021’ report.
Women and caregiving
Among the 24 caregivers to older adults (who were part of the Ugargol and Bailey’s research project), 11 were spouses (nine female spousal caregivers and two male spousal caregivers), eight daughters-in-law, two daughters, one son-in-law and two neighbours.
Thus, the research paper once again established a well-accepted social norm (especially in India) that family or informal or unpaid caregivers are usually women — who are again either wives or daughters-in-law.
Another 2020 research paper, ‘Reciprocity between older adults and their caregivers in emigrant households of Kerala, India’ by Ugargol and Bailey, again reiterated the important role played by wives and daughters-in-law in elderly caregiving.
Take for instance the cases of Elsa (35), Padma (37), Dannie (34) and Ruth (31) — names used by Ugargol in the research paper to protect the identities of these people — from Kerala’s Kottayam.
These women share several commonalities in their lives. All of them had to quit their secure and well-paying jobs abroad and return to India to provide care for their parents-in-law. Elsa is working as an assistant professor in Kottayam now, but Padma, Dannie and Ruth — who all worked as nurses earlier — have no jobs currently.
The process of caregiving becomes more physically and mentally daunting when the caregiver herself is elderly.
Matilda is 73 years old. Despite her own age-related health issues, she is looking after her husband — who is visually impaired. All her three children have moved out of the family house to establish their own respective careers and start their own family lives.
Their stories were mentioned in Ugargol and Bailey’s research work. It is not that these women were forced to become caregivers. They volunteered to take care of the older adults as it is considered their duty and responsibility.
However, often family caregivers face many emotional, financial and physical challenges. According to the US’s National Institute on Aging (NIA), caregivers play an important role in how the healthcare system functions and should be made a part of the healthcare team.
Talking about why she had to stop working, Padma said, “After coming to India, I was working for three months. I had to quit the job after my mother-in-law fell down and broke her leg, as she needed constant care. Then I had my son. Now I do want to work, as my children are older. I want to take up a job close to home, but there is no one to help.”
Padma, 37, quit her nursing career in Dubai and returned to India to take care of her elderly parents-in-law. While her husband is working abroad, she stays with her parents-in-law and two children in Kottayam.
“In a traditional society like India — where elderly people are usually nursed in their homes — caregiving invariably becomes the duty and responsibility of women,” Dr Steve Paul Manjaly, consultant geriatrician, Apollo Hospitals, Bannerghatta Road, Bengaluru, told Happiest Health. “India is witnessing a demographic change in the last few decades. The care of the elderly is a big issue.”
Global rise in ageing population
According to the Census 2011, India has 104 million older people (60+years), constituting 8.6 per cent of the total population of 1.21 billion.
However, the NSO’s ‘Elderly in India 2021’ report stated that India’s elderly population (aged 60 and above) would touch 194 million in 2031 from 138 million in 2021– a 41 per cent increase over a decade.
It is not just India that is witnessing a steady growth of its ageing population with an increase in life expectancy. It is a global phenomenon.
In 2019, the number of people aged 60 years and older was one billion. This number will increase to 1.4 billion by 2030 and 2.1 billion by 2050, as per the World Health Organization (WHO).
An American experience
Deborah Witt Sherman, professor at Nicole Wertheim College of Nursing and Health Sciences, Miami, US, told Happiest Health that caregiving for the elderly and infirmed was a complex issue. It varies from country to country because of tradition, culture, ethos and governance, she added.
In her 2019 research paper, ‘A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients’, Sherman wrote in detail about various health and psychological issues faced by Sharon while taking care of her mother Mrs M (84). Sharon’s case highlights the complexities involved in caregiving when the caregiver is left with little or no support.
Do informal caregivers mean women?
A 2016 research paper, ‘Gender differences in caregiving among family – caregivers of people with mental illnesses’, stated that women predominate among caregivers of the elderly. The study was done by Nidhi Sharma, Subho Chakrabarti and Sandeep Grover, department of psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh, India.
The study cited that 70 to 80 per cent of impaired elderly across the globe are nursed in their homes by their family members. Around 57 to 81 per cent of all the caregivers of the elderly are women — either wives, daughters or daughters-in-law. However, the study also mentioned the fact that the gender dynamics in caregiving are changing fast as more and more men are looking after their old and infirm family members.
Another study, ‘Daughters provide as much elderly parent care as they can, sons do as little as possible’, by the American Sociological Association (ASA) in 2014 found that daughters provide an average of 12.3 hours of elderly parent care per month as compared to sons’ 5.6 hours.
The study suggested that “in the division of elderly parent care among siblings in mixed-sex sibling groups, gender is the single most important factor in the amount of assistance each sibling provides.”
The study was based on a sample of more than 26,000 Americans over the age of 50.
Who cares for caregivers?
The story of Mumbai-based psychologist Maitreyi Nigwekar is a testimony that care for caregivers is a distant dream. As a teenager, Nigwekar actively assisted her mother to take care of her father, who was battling alcoholism. It was not an easy job for young Nigwekar. The doubts, queries and struggles associated with caregiving left a mark on her.
In 2015, Nigwekar, after finishing her master’s in health psychology from the University of Leeds, England, started her own not-for-profit organization, Adveka Foundation, in Mumbai. Speaking to Happiest Health, Nigwekar said that Adveka Foundation was a platform to provide love, care and protection to caregivers looking after people having physical and mental issues. “We mostly hosted women — mothers, sisters, daughters-in-law and spouses,” she said. “There were some men too — mostly fathers of young children.”
After supporting around 3,000 caregivers, mostly informal and unpaid family members of the elderly, diseased and infirmed, the foundation had to wind up its operations in August 2020 — during the first wave of the pandemic. The reason behind the closure of Nigwekar’s “dream project” was a lack of funding.
“Nobody really cares for the caregivers,” she said. “It is often a lonely job. It is unrecognised. Caregiving is usually labelled as a duty towards our loved ones. The burden of caregiving is usually on women, especially in India. We forget that it is a 24X7 work. It often leads to physical, mental, psychological and financial strain to the attendants.”
At Adveka Foundation support groups were formed among the caregivers. Regular counselling was provided to the caregivers with the emphasis that they need to first take care of themselves before attending to someone else’s needs. “If a caregiver is facing any physical, mental or financial issue it would affect their caregiving process too,” said Nigwekar. “It is important to educate caregivers that all these factors are interconnected.”
Talking about the role of governmental agencies in providing support to caregivers, Nigwekar said that they were not even remotely on the radar of the government.
No institutional support
Unpaid carers are not formally recognised in India. The Right to Persons with Disability Act 2016 defines a carer as any person including parents and other family members who with or without payment provides care, support or assistance to a person with a disability.
India does not provide direct financial support to unpaid carers. The Right to Persons with Disability Act 2016 has a provision for a carer allowance for persons with disabilities with high support needs, but that provision has not yet been implemented.
According to the Organisation for Economic Co-operation and Development (OECD), the intergovernmental body for economic progress and world trade, headquartered in Paris, France, across the globe, women spend two to ten times more time on unpaid care work than men. The unequal distribution of caring responsibilities is because of discriminatory social institutions and stereotypes of gender roles.
As per the OECD, in India, a man usually spends 36 minutes in a day on unpaid care responsibilities, whereas a woman spends six hours. Indian women spend 85 per cent of unpaid work on housework, which includes taking care of the elderly and children. Ironically, out of the 36 minutes, 36 per cent of men’s unpaid work goes into housework and the rest of the time is spent on shopping, taking care of family members and travelling related to household activities.