We Are All "Carers"
So, who are these carers that your NGO supports?
A. P. : They are all those who, without being paid for it, take care of a loved one: a parent suffering from a chronic pathology, a child suffering from a mental disorder or a disabled friend. The majority of healthcare organizations focus uniquely on the sick person. However, he or she that makes the difference is often the carer. 85 % of support work is done by the relatives, but doctors often pepper them with information for a half-hour. With my NGO, Carers Worldwide, we give a voice to this population that doesn’t get any recognition. The problem is even more urgent, since the family unit is exploding in developing countries. People used to live together and help each other. Today, agriculture is no longer a profitable trade and the children move from city to city to study or find work. The extended family1 hardly exists anymore, except in villages. When a member of the household falls ill, those who have to take care of them find themselves isolated and invisible, as if they were shut away in their own world.
How do you help them to break this isolation?
A. P. : We have created nearly 300 psychological support groups in different regions of India and Nepal, to give them the opportunity to meet other people in the same situation and to learn by sharing their experiences. Furthermore, 85 % of the carers face physical or mental problems due to their status, which is often precarious. To remedy this, we collaborate with different health centres and have trained seventy doctors to better respond to their needs. We also provide them with information on how to deal with family and relationship problems. We started three years ago with 150 carers; we are now at 5,500. This betters the lives of 27,000 individuals.
Beyond this psychological support, what can be done to improve their material situation ?
A. P. : Because their role as caregivers is extremely time-consuming, 90 % of the carers lose their income, their job, not to mention that the sick person can no longer work either. Sometimes, when children have to take care of relatives, they can no longer go to school. We have therefore imagined an alternative system with the creation of community care centers in which two paid carers take care of several sick people. This way, 255 children and 2,460 adults have been able to return to work or school. We also do lobbying, by launching carers’ associations. In Nepal, we have created two cooperatives with over 600 members that save money by helping each other. There and in India, we also initiated the first Carers Day two years ago. Discussions are taking place with the UN to extend it throughout the world.
Do you work with or in the place of government and the healthcare system?
A. P. : In the place of, sadly. In a country of 1.3 billion people like India, there are statistics on everything – mental illness, AIDS, handicap – but absolutely none on carers. These people are often women who don’t have the choice. Already vulnerable, they must also keep house and spend their nights asking themselves what would happen to the loved one if they died. However, as they seem in good health, doctors continue to think that it is useless to be concerned with their fate. We sensitize and train medical personnel to take the family of the sick person into account. We dialog with public and university administrations to act on a large scale.
Recently, the state of Jharkhand, one of the poorest in India, asked us for help to get closer to 20,000 carers in the territory. This proves to what point our model has a positive influence on the quality of care and the quality of life.
What pushed you to get involved?
A. P. : I had long worked in the domain of mental health in India and observed how carers were isolated. Then, when our second daughter was born, we discovered that she suffered from a form of Down’s syndrome. Despite all our knowledge, we really needed the support of our friends and family. Without them, I don’t think we would be where we are today. This is what made me reflect on the situation of carers in less developed countries.
In the long run, what would be the solution to better recognize the roles these individuals play?
A. P. : These aids represent a veritable volunteer army. For doctors, and for pharmaceutical companies, they are the ones that allow for a treatment to be successful. For patients, they are the brothers and the friends who are indispensable for living from one day to the next. There are also human and economic stakes: 90 % of carers can no longer work, which deprives the nation of their productivity. We must therefore collaborate with the deciders and actors in healthcare to take care not only of the sick, but also of the caregivers. And not only in India and Nepal: a study by the World Health Organization estimates that with the increase in life expectancy, many more carers will be needed in developed countries. Whether we are rich or poor, a king or an untouchable, on this planet, we will all one day be the carers or the cared for.
By Côme Bastin
1. Traditionally, several generations of a family lived under one roof.