Support groups can help relieve the burden of caregivers

In my previous article, we looked at the importance of recognizing the burdens placed on caregivers and the resulting effects on their mental health. Recognition and timely support of caregivers will not only improve their wellbeing and ability to care, but also prevent emotional strains and mental stresses from developing into full-blown mental health conditions.

Support is often best provided close to home by family members, friends or colleagues. Helping the caregivers you know to stay healthy can preserve both their physical and mental wellbeing. Make sure they are eating healthily and getting enough sleep. Perhaps you could take them a dish for lunch or dinner, have a meal together or share some fresh vegetables or fruit you have grown or bought. Lack of sleep is a key factor that increases stress and depression. Help them work out how to get enough sleep if theirs is regularly disrupted – can they get someone in to care for one night a week or can they take naps during the day? Regular exercise is an effective stress buster. Offer to sit with their loved one whilst they go to a yoga class or take a walk. If they find it hard to get motivated to go out alone, join them. This could also give you an opportunity to talk to each other and allow them to share their concerns and worries, or equally and most importantly, talk about topics completely unrelated to caregiving.

In addition to this level of support, the mental health of caregivers can be supported by meeting with other caregivers, with whom they can share common experiences and gain mutual support. For the last two years, Carers Worldwide has been working with partner organizations across India to bring caregivers together into caregivers’ support groups. These groups evolve depending on local needs, geography and numbers. Some are organized at village level and meet every two weeks, others get together once a month. The groups are facilitated by experienced community workers from our partner organizations – local NGOs which are well established and have worked for years with people with disabilities or mental illness. By partnering and taking part in capacity building training with Carers Worldwide, these NGOs have recognized the critical role caregivers play and understand that their needs must be effectively addressed in addition to those of the person affected.

For many caregivers, attending a caregivers’ group has given them a fresh lease of life and the opportunity to come out of their houses for the first time since they started caring. The first few times a group meets can be highly emotionally charged as caregivers express feelings they have previously kept buried. They are so used to the focus being on the person for whom they care, that the relief they feel at being asked about how they are and what their own needs are can be overwhelming. All the caregivers involved have committed 100% to the groups. They gain huge value from the emotional support and friendship and realize that they are not alone. This boosts their confidence and self-esteem and initiates a process of empowerment.

The activities and impact of the caregivers’ groups have gone beyond what we had originally planned or hoped for. In one cluster of villages in rural northern Karnataka, group members have set up their own informal mobile-phone-based network for immediate support outside of group sessions. If a member misses a meeting, the other caregivers will immediately call her  to check how she is and why she hasn’t attended. They will then reach out in whatever way required to ensure she is supported and help her through whatever problem or emergency she is experiencing. Members regularly phone each other between meetings if they need a listening ear or advice. If a caregiver has a particular practical need or request, the members will pull together to try and help her or seek advice from the partner organization. Their mutual support has even extended to offering each other respite from caregiving. Tilotamma, a group member in our project area in Jharkhand looks after other caregivers’ relatives so they can get to the market for a few hours, an activity they would otherwise find most challenging. When we recently visited the support groups, 100% of the caregivers involved reported that their mental wellbeing has improved after joining the group.

Our experience tells us that for those caregivers who live with significant levels of stress or have developed depression or anxiety, access to professional counseling services is important. This type of provision should be available without fear of stigma and caregivers should be given support to find the right counselor, who can work with them over time to find ways to deal with their experiences.

Caregivers are vital players in society. The burdens associated with caring must be recognized and caregivers should be afforded the consequent mental and emotional support they require. In the words of Rashida Begum, caregiver for her three children with advanced muscular dystrophy and member of one of our caregivers’ groups, “Life is still hard, my problems are still there, but now I have been thrown a lifeline and can face my future.”

In my next article, I will talk about the need for caregivers to have respite or a short break and the ways alternative care options can be established in the community.

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 columns@whiteswanfoundation.org

The opinions expressed in this column are those of the author and do not necessarily represent the views of White Swan Foundation.