There is an invisible population living among us: in your street, your workplace, college or even your family. These people work long hours, for no monetary reward, often to the detriment of their own health, wellbeing and livelihood. Who are these unrecognised heroes and heroines? They are caregivers.
A caregiver is a person of any age who cares for or nurses a relative, friend or partner who requires this help due to physical or mental ill health, disability, old age, substance misuse or any other cause. Generally, caregivers do not ask to be caregivers. They may find themselves gradually taking on a caregiving role, or it may come very suddenly. It is not a role they are trained in or paid for, but it is one of the most important things they will do in their life: they are caring for another human being who, in many cases, is dependent on them to meet their physical, medical, emotional, social and economic needs. This level of holistic support is not typically available from the NGO sector or the government, and there is certainly no specific support for the carers themselves. Sadly, most professionals in the medical or social sector fail to fully realise the immense contribution made by caregivers – and in turn the immense burden it places on them.
Caregiving can be a rewarding experience and most carers are proud of their role. However, caring undoubtedly has a significant impact on the caregiver: they often have to adapt their entire life to meet the needs of the person they are caring for, leaving little time for themselves. As a result, many carers experience ill health, social isolation, stress and anxiety. Many have their own life chances and livelihood taken away from them as they give up studies or work in order to care. Those who can stay in education or the workplace often experience discrimination as a result of having to juggle work and caregiving responsibilities. These impacts are being seen more and more in India, as traditional extended family living is increasingly replaced by the nuclear family.
There is currently no data readily available on the number of unpaid family caregivers in countries like India, our neighbours, or indeed across much of Asia and Africa. Estimates from the UK put the number of caregivers there at one in eight adults (around 6 million people). Taking this figure as a guide, India would have over 150 million caregivers. That is a group of more than 150 million adults and children who are going unrecognised and unrewarded, and whose health, wellbeing and futures are significantly affected by caregiving for another person.
In the words of Dr Ajay Kumar, a psychiatrist working in Hospet, Karnataka, “Caregivers are an invisible community, sometimes even invisible to themselves. It is important to address this invisibility, which is the first thing that has to change.”
So think of the people you know: your relatives, neighbours, friends and colleagues. Could any of them be a caregiver? The chances are that you know at least one carer – they may not describe themselves as a caregiver and you may not have realised the responsibilities they carry, but they are all around us, at all levels of society. They do not have to stay invisible and unrecognised. As Ashadevi, caring for her husband Guneshwarana who has schizophrenia, says, “Just a simple ‘Hello. How are you doing today?’ would make me feel better.” These kind words, recognising the caregiver as well as the person for whom they care, are a first step towards recognition and support. This simple act could make the world of difference to a caregiver's day. If we all take the time to make that first step, who knows where the journey will end?
Future articles in this series will focus on the various impacts of caregiving, specific groups of caregivers, the move towards policy change and the impending crisis of carrgiving as our society faces significant demographic change.
Note:The term ‘carers’ is an alternative term for “caregivers” and is predominantly used in the UK, Australia and New Zealand.
Dr Anil Patil is the Founder and Executive Director of Carers Worldwide. Carers Worldwide highlights and tackles issues faced by unpaid family caregivers. Established in 2012 and registered in the UK, it works exclusively with caregivers in developing countries. Dr Patil co-authors this column with Ruth Patil, who volunteers with Carers Worldwide.For more information you can log on to Carers Worldwide.You can write to the authors at firstname.lastname@example.org
The opinions expressed in this column are those of the author and do not necessarily represent the views of White Swan Foundation.