Carers Worldwide

I am applying for the prize because I think it would provide a fantastic opportunity to drive forward a global caregivers’ movement. Funding from the prize would enable me to scale up my organisation’s existing work into new areas, thereby increasing the number of caregivers and family members supported through my work.

I would value marketing and media support through the prize so that I could find a way to bring the issue of caregiving on to the global agenda as the issue does not currently get the level of attention it deserves.

At present, I am developing paid-for training and consultancy services through which my organisation will train large NGOs/INGOs on the ‘Carers Worldwide Model’ and provide consultancy services to public and private sector organisations to enable them to become ‘carer-friendly’ employers. The profits generated from these services will be used to further expand the advocacy work of my organisation so that even more caregivers can be supported through policy change. I would welcome mentoring and/or networking support through the prize to develop a funding and revenue model for the services, and to connect with potential corporate partners who may be interested in utilising the service. 

I grew up in rural India and worked in the NGO sector there. Through my work I came across many persons living with mental illness, and their caregivers. When engaging with caregivers I learned many had socioeconomic and health issues but no support was available for them.

When my British wife and I relocated to the UK we started a family. Our second daughter was born with Down’s Syndrome and we became caregivers. Being in the UK we benefited from a strong support system and public sector assistance which reduced the caregiving burden. I thought back to caregivers in India who had no support and after conducting research found this was the same throughout the developing world.

In 2011, Carers Worldwide began. Our vision and purpose is to create a world in which the physical, emotional, economic and social needs of every caregiver are routinely met which we are achieving by creating and advocating for support systems and infrastructure for caregivers in developing countries.

Currently operating in India, Nepal and Bangladesh my goals for the future are to expand into other developing countries and to encourage each country to develop caregiver-specific legislation so that caregiver’s rights become protected and guaranteed.  

Caregivers of sick and disabled loved ones face social, mental, physical and economic challenges. There is no worldwide data on the scale; however, if the statistic that 1 in 5 Americans are caregivers was the same globally this would mean there are over 1.5 billion caregivers. Caregivers in developing countries are particularly hard hit due to limited availability of support systems, welfare provisions, and healthcare facilities for themselves as well as those they care for.

Our research conducted with caregivers in South Asia has found that 92% worry about not having enough money to meet their family’s basic needs and 79% of caregivers experience anxiety and/or depression. 84% of unpaid caregivers in South Asia are women and girls which perpetuates gender inequality. Despite the challenges there is no formal recognition or support for caregivers in South Asia.

We address this problem by working with well-established local NGO partners in India, Nepal and Bangladesh who implement our tried and tested ‘Carers Worldwide Model’ that holistically transforms the social, mental, physical and economic wellbeing of caregivers and their families. As well as supporting caregivers individually, we build strong links with Government authorities and advocate for caregivers’ rights at policy level. 

Before our launch, projects working with caregivers in South Asia tended to focus on how caregivers could best support those they care for. Whilst well-intentioned, this approach often increases caregiver burden.

Contrastingly, our work is innovative and unique as it is the only work in this region addressing the complex needs of the caregivers as individuals. We understand the unique barriers caregivers face in attaining socioeconomic empowerment and implement various activities to overcome these. Holistically addressing the need of caregivers is a new concept in these areas. In fact, the concept of addressing holistic needs of caregivers’ is unique globally.

What makes our work disruptive is the importance we place on advocacy. We believe that caregivers’ rights need to be formally recognised and supported if long-term sustainable change for caregivers is to be achieved. We also believe that caregivers themselves must be central to advocacy efforts, as they are best placed to know their needs, so we build the leadership capacities of caregivers and facilitate access to decision-making bodies for this to happen. For many of these caregivers, they have gone from being invisible within their own homes and communities to having the confidence to demand provisions from Governments officials. 

Caregivers play a vital role in keeping societies functioning. By ignoring the wellbeing of caregivers, they run the risk of burning out which can result in lower quality care for those they care for and in a worst-case scenario, caregivers needing care themselves.

Our work values and supports caregivers which impacts caregivers as well as the vulnerable persons they care for. Both groups are currently being left behind. More broadly it ensures the smooth functioning of society can continue.

To achieve our planned impact of a fair world for caregivers we plan to continue to increase the number of partners we work with in different areas of India, Nepal and Bangladesh and to expand into new countries. By the end of 2030 we aim to have transformed the lives of 10 million caregivers in South Asia through policy changes which we will do by forming and promoting a ‘South Asia Carers Alliance’: a civic government and engagement body that will advocate for formal recognition and rights for millions of caregivers in South Asia along with grassroots action: the most effective way to achieve change as caregivers themselves are best placed to know their needs and to advocate for them.