In this article, I will highlight the ways families, the community and local organisations can provide practical support to caregivers by sharing the responsibilities of care and providing a much needed break to the primary caregiver.
We have talked to caregivers across India, Nepal and Bangladesh and learnt of the harsh realities facing them day in day out and the concerns that keep them awake at night. Time and again, we hear that they do not get a break from caregiving: no time for themselves, no time even to go to work without worrying for the welfare of the disabled or mentally ill relative for whom they care. Our most recent survey conducted with our partners in India showed that 90% of caregivers are concerned about not being able to take a break from caregiving.
Having no alternatives for care can have dire consequences. We heard from Shantamma,* full time caregiver for her 12 year old son Gangappa*, who has cerebral palsy. The only way she could go to work was to lock him in the house on his own all day. But then she could not concentrate on her work and spent her day worrying about him. Returning home, she would find him in an appalling physical state and highly distressed. Consequently, Shantamma does not often go out to work anymore. This means that she, Gangappa and the rest of the family sometimes only get to eat one meal a day. Sadly and shockingly, there are millions of Shantammas and Gangappas across the region.
A core aspect of the Carers Worldwide model is identifying and implementing alternative care options. We work with the caregiver, cared-for person and family members to establish the best ways that care can be shared. In many cases, other relatives, close friends or neighbours can be equipped to take on care for part of the day, giving the caregiver time to take care of daily household tasks or leave the house to go to market. This relieves either the worry of having to leave their loved one alone or the physical strain of having him or her accompany them, an ordeal that can be challenging for both caregiver and cared-for.
Sometimes though, more is needed. For this reason, we are piloting an innovative, community led alternative in two of our project areas: a concept known as “community caring centres.” Led jointly by caregivers and community members, with the support of local NGOs, these centres are located in the heart of the community. Welcoming, equipped with toys and therapy materials and staffed by trained locals, the centres will be a haven for both caregiver and cared-for. For a small daily fee, caregivers will be able to leave the child or adult for whom they care and go about their daily work, secure in the knowledge that their loved one will be kept safe, well fed and stimulated. The children and adults attending the centres will be out of the house, engaging in activities that will support their physical and emotional needs. It is a win-win situation. Caregivers can get a break, go to work, earn enough to support their family, all without the burden of worrying about their loved one’s welfare. The children and adults attending the centres will experience company, play, therapy and quality care. On top of all this, the centres will provide training and employment for the local women staffing them.
What I have described is a simple initiative but one which can go a long way towards easing the responsibilities of caregivers. Feedback tells us that these centres are just what they need. One mother, who has been able to return to tailoring full time told us, “My community appreciates my skills and I feel valued again. My son is well looked after: I have peace of mind.” As for her son, he simply says, “It’s fun here! I made a new friend.”
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.