Caring for carers: Anil Patil’s mission to support a neglected workforce

While working in rural India on a mental health initiative, Anil Patil was struck by a recurring fear voiced by nearly every carer he met: "What will happen to the person I care for if something happens to me?"

This question struck a deeply personal chord. Years later, when Patil's second daughter was born with Down syndrome, he suddenly found himself navigating a new and uncertain world. Although he and his wife were living in the UK at the time and received vital support from the National Health Service (NHS), they still struggled—not just logistically, but emotionally too. It took the combined effort of family, friends and understanding colleagues to help make the weight of caregiving bearable.

"I started thinking deeply about the carers themselves — the people behind the scenes, who are often completely invisible," Patil stated. "You can see the pain of the person being cared for. But you can't see the internal battles of the carer"

This combination of his personal and professional experiences laid the foundation for Carers Worldwide, a first-of-its-kind organisation that Patil founded in 2012 to address the deep and systemic neglect of unpaid family carers across South Asia.

An invisible majority

Caregiving, especially in South Asia, is a role almost exclusively assigned to women — daughters, wives, mothers, etc. They step into it not out of formal obligation, but because love, expectation and gender norms demand it. For these carers, there is no financial transaction, no state recognition and no social protection from the government.

"These are not trained professionals. They are everyday people caring for a loved one with a chronic illness, mental health condition, disability, or age-related need," Patil explained. "And society doesn't see them — because caregiving doesn't look like a job. But it is."

Patil's approach was simple but revolutionary. He began by listening to carers directly, mapping out their daily challenges and hopes, and building a model around their actual needs. In 2013, Carers Worldwide launched its pilot at a local level in India, supporting 250 carers of people with cerebral palsy, Down syndrome and spinal cord injuries. 

Within 18 months, the impact was so tangible that the Carers Worldwide model was scaled up across five states in India, later expanded to Nepal, Bangladesh, and by the end of last year, a feasibility study was carried out in Pakistan.

"These are not trained professionals. They are everyday people caring for a loved one with a chronic illness, mental health condition, disability, or age-related need. And society doesn't see them — because caregiving doesn't look like a job. But it is.

Anil Patil, Founder and Executive Director, Carers Worldwide

In Bangladesh, the organisation works with partners like Centre for Disability in Development (CDD) and Society for the Welfare of the Intellectually Disabled (SWID), raising awareness, designing and developing a programme, building evidence by collecting the data, providing training and capacity-building and help them to work at a broader policy level. 

"Our partners already work with people with disabilities," said Patil. "They're best placed to identify the primary carers. We equip them with the tools to support not just the cared-for but also the ones doing the caring."

One of his most powerful frameworks is the "triangle of care or partners in care" with three interdependent sides: the person receiving care, the medical professionals and the carer. 

"Doctors often give instructions on how to care for someone but rarely ask how the carer is doing. That is a massive oversight," Patil claimed.

The consequences for ignoring carers are dire. He recalls speaking to a man who felt his wife — once a gentle and attentive carer — had become short-tempered and disengaged. "He thought she didn't care anymore," Patil said. "But she was simply burnt out."

"These are not trained professionals. They are everyday people caring for a loved one with a chronic illness, mental health condition, disability, or age-related need. And society doesn't see them — because caregiving doesn't look like a job. But it is."

Carers Worldwide's baseline survey shows that 89% of carers across its programmes show signs of anxiety and depression. Over 86% report physical ailments, while almost all of them face severe financial stress. In Bangladesh, 93% of carers are women, many of whom drop out of school or leave jobs to care full time, often without any state support or social safety net. 

"There are statistics on people with disabilities, mental illness, and dementia etc, but not on the people who care for them," Patil pointed out. "It's a population hiding in plain sight."

The impact

Carers Worldwide offers a multi-pronged approach: including peer support, health screenings and mental health counselling, short breaks, economic empowerment, and policy advocacy. 

One of its most transformative interventions is the creation of carers' support groups. These are peer-led communities where carers meet monthly to share, learn, and heal. In Bangladesh, 50 such groups have been established, with over 1,800 established across the region.

"When we started, carers would come to the centres and just cry," Patil said. "Now they speak in front of thousands. They're advocating, lobbying local authorities, and running training sessions themselves."

To ease the burden further, Carers Worldwide has launched community caring centres — spaces where carers can temporarily leave the person they care for in trained hands, so they can run errands, attend social events, or simply rest. Bangladesh now has seven such centres, part of a regional network of 70. "It's mostly for children, but the impact is huge," Patil noted. "It gives time, dignity, and space back to the carer."

The financial side of caregiving is often the heaviest burden. "We try to understand what kind of jobs the carers did before," Patil said. "Can they return to it? Do they have new ideas that we can help make happen?"

Carers Worldwide provides income-generation training, small grants, and logistical support to carers. When they started, only 30% had any source of income. Today, over 80% earn — many through small cooperatives run and managed by carers themselves.

"We have also introduced a first-of-its-kind helpline for carers in Nepal. In Bangladesh, we recently registered a national platform for carers and organisations wishing to support them, called Carers Alliance Bangladesh," Patil added. "Through this platform, carers can seek guidance, advocate for policy change, promote greater awareness and recognition of carers, inform decision-makers about the role and impact of caring, and educate stakeholders on the vital contribution carers make to health, social, and economic sustainability."

And there have been some successes. In India, Carers Worldwide played a role in key legislative reforms, including the Persons with Disabilities Act and the Mental Health Bill Act, both of which now formally recognise caregiver support. Last year, the Government of Karnataka became the first state in South India to introduce a carers' allowance—an achievement we are especially proud of, as it reflects the impact of our sustained advocacy efforts.

Due to the political condition in Bangladesh last year, it has not yet been established on a country-wide level but Patil is hopeful. "It's happening district by district. Eventually, it will go national."

Building a care-sensitive world

Patil says that caregiving is not a niche issue, it will happen to everyone eventually. "Most people will become carers at some point in their lives. The healthcare system is completely dependent on them but does nothing for them. That's not sustainable," he asserted.

A 2008 WHO report warned that by 2030, the need for long-term care in low- and middle-income countries (LMICs) is expected to rise by 400%. "We are sitting in a bubble that's going to burst," Patil said. "In South Asia, we have lost the joint family safety net. But governments haven't stepped in to fill that role."

To prepare, Carers Worldwide is looking at new possibilities. They are exploring corporate sensitivity training, to help employers identify and support employees who double as carers. Many corporations are losing out on skilled workers. Patil believes that sensitising managers is crucial. "They are losing skilled workers and spending more on recruitment. It is in everyone's interest to support carers."

Carers Worldwide is also planning to inspire, train, and offer consultancy support to INGOs such as Oxfam and BRAC to help integrate carers into their programmes. "We want our current partners to become resource organisations, providing support to carers within their own networks," he said.

Eventually, Patil hopes to set up employee resource groups, offering carers practical assistance such as directories for disability-friendly home modifications or other services.

Carers Worldwide is now more than a decade old, currently operating in three countries and reaching tens of thousands of families. Funded by philanthropists, trusts and foundations, and international donors, the organisation is working to become self-sustaining — staying with local partners for a maximum of seven years before helping them stand on their own.

But for Anil Patil, the mission is timeless.