We have already discussed the difficult but rewarding nature of caring for a sick or disabled relative. Being a caregiver impacts all areas of one’s life. However, many of the caregivers we work with tell us that the additional economic hardships their families face are the most challenging to bear. When individuals become caregivers, they typically face a tremendous financial burden. Where families were already on a low income, the effects can be disastrous. A survey conducted by Carers Worldwide in 2015 found that 93 per cent of families in our project areas across India that included a caregiver were living below the poverty line, a shocking figure in this day and age. So what exactly are the challenges and how can they be overcome?
The stress and anxiety of caring is compounded by the lack of money. In many cases, the person being cared for will have had to give up their own job, and this loss of income has real consequences for families. In addition, their caregiver (usually a spouse or female family member) often has to cease any kind of employed work in order to care for their loved one. This loss of two incomes is a huge blow to the family. The situation is often compounded by the additional but unavoidable medical expenses incurred. Families who were already struggling to make ends meet are often most affected. The dramatic change in the family’s economic circumstances adversely impacts their ability to cope with an already difficult situation.
In India, there are several government schemes that provide support to the person affected. They include the state disability pension and the National Trust scheme, which supports the cost of medical and therapeutic care for those with severe disabilities. However, there is no recognition of the wider impact on the family, and no economic support for relatives who have taken on the role of caregiver.
Carers Worldwide has recognised that caregivers need sustained income generation opportunities that can co-exist with caring responsibilities. Facilitating this is a key part of our programmes with partners across India. Through taking a caregiver-focused approach based on individual interests, skills, family needs and caring responsibilities as well as careful consideration of local markets and opportunities, we identify livelihoods that are appropriate and are sustainable for that caregiver and family. Local government work schemes, training schemes or loans can be accessed to assist caregivers to start a new livelihood. Alternatively, livelihood activities offered by local NGOs can be tapped into, with caregivers seen as priority beneficiaries due to their social and economic situation.
Alongside getting caregivers into work, it is vital to ensure that the quality of care experienced by the person affected is not compromised. Alternative caring arrangements need to be considered carefully; for example, involving extended family members or neighbours, or providing care at community based centres, an initiative Carers Worldwide is spearheading with selected partners.
Over the past year, taking a proactive approach to tackling economic hardship amongst caregivers has resulted in almost 900 caregivers restarting paid work and bringing their families back up above the poverty level. Along with economic growth, these caregivers have experienced renewed self esteem and social inclusion.
The case of Nirmala and her family demonstrates how this approach can transform lives. Nirmala, a widow, has cared for her four children since her husband died. Her oldest daughter, Vidya, has cerebral palsy. With no family support, Nirmala was unable to go to work, and the family sunk into poverty. Nirmala approached our partner organisation in Andhra Pradesh and joined the caregivers’ programme promoted by Carers Worldwide. She received a loan of Rs 10,000 and established a small tailoring business. She has since then joined the local caregivers group where she takes part in their group savings scheme, helping secure the future of the family. Vidya started receiving therapy and the support needed to attend the local school, which means she is learning and gaining independence; Nirmala now has more time to work, and her earnings support her family.
Focused, practical support for caregivers ensures that Nirmala and others like her can build sustainable livelihoods, continue to care and strengthen their families’ economic security, break down the disadvantages they face and create brighter futures.
*Names changed for purposes of confidentiality
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