In a hut in Mangalavada, Pavagada taluk in Karnataka, Hanumantharaya, 32, looks distractedly at his neighbors sitting around him. Hanumantharaya was diagnosed with intellectual disability and psychosis when he was a child. His mother, Lakshmamma is his primary and only caregiver. Lakhshmamma, 80, is exhasuted. “It's very tiring to keep an eye on him all the time. He gets angry and aggressive at people around him sometimes. After I am gone, who will take care of him?” she says. Lakshmamma is part of the disability self-help group (or sangha) in Mangalavada, created with the help of Narendra Foundation in Pavagada, and Basic Needs India (BNI), a not-for-profit organization on mental health based in Bangalore. The organizations work together on building community participation in mental health care in villages like Mangalwada.
Lakshmamma reaches out to members of the sangha to care for her son on the days that she needs to step away from home. “As a caregiver, she can feel lonely and exhausted. We help caregivers like her take a break from caregiving and tend to their other work. We take turns in caring for the mentally ill person in their family,” says Satish, a member of the disability group. But for quick errands like a dash to the local store, she can also turn to her neighbors.
Years of participating in awareness programs conducted by development workers, along with numerous medical camps at the district level by mental health professionals, have sensitized members of this village and several others towards the needs of the mentally ill and their caregivers. This sensitization works to the benefit of caregivers like Lakshmamma.
Why community mental health care matters
Care for persons with mental illnesses does not end with medication. An important aspect of recovery is rehabilitation and support from caregivers and the community in which they live. After receiving medical treatment, persons with mental illnesses may also need rehabilitation to return to their daily activities, to begin to work and support themselves and their family, and also to participate in the community.
One of the main aims of community mental health is inclusion of mental healthcare into primary healthcare, to reach out to larger communities living in areas that do not have adequate medical facilities. Organizations such as BNI work with partner organizations and mental health professionals to support community mental health services in such areas. Community workers play an active role in spreading awareness, reaching out to patients, and getting them treated at medical camps. Awareness programs are presented through street plays and songs, making them more relevant to the locals.
What is community caregiving?
Shantaram, a mentally ill person, had come wandering on the streets of a locality in Thalvadi, Erode district. An NGO representative took Shantaram to a medical camp in the area. In the absence of any caregivers to administer his medication, the local police station took up the responsibility. The police personnel administered medicine to him everyday for about three months. Shantaram recovered from his illness and recalled where he came from. The police personnel dropped Shantaram back to his village.
(This narrative is based on real events. Names have been changed to protect privacy)
Community caring or caregiving is where members of the community take responsibility of providing support and care to a person with chronic illness. Caregiving often includes administering medicines and taking care of the person's safety and wellbeing. Community caregivers could include extended family, friends or neighbors who are willing to volunteer their time and effort to offer the primary caregiver temporary respite from their caregiving tasks.
The caregiver should remember to follow the advice of mental health professionals in providing drugs and caring for the patient. They should remember that the treatment plan of one patient is not the same as another.
Can community caregiving work in an urban setup?
In cities, caregivers form support groups where they get together to discuss caregiving and find support among themselves. But the concept of community support is yet to become common in urban areas. “The idea of community is much stronger in a rural setting, where there are people with a nature to volunteer, help and care for another person. An urban setting does not have a closed community group because people are involved in their own work, are migrating from place to place, and don't have a sense of community. But the existence of such a system could be of great help to patients and caregivers,” says Dr N Janardhana, associate professor, department of psychiatric social work, NIMHANS.
Experts say that for the larger community to be involved in the care of people with mental illnesses, there has to be increased awareness of mental health issues which in turn will result in empathy.
Benefits to the caregiver and person with illness
Caring for a person with serious mental illnesses like schizophrenia, bipolar disorder, is usually long term and can become exhausting for the caregiver in the long run. They may not be able to continue in their regular job or attend any social gathering due to the constant need to be with the person. But, with support from neighbors or family, the burden of caregiving becomes lighter. This allows caregivers like Lakshmamma to take up a job and support their families financially. With a strong support group, as is seen in many rural settings, the neighbors often keep an eye out for the person with illness. With a community setup, a caregiver may feel relieved and less isolated. The patient will also find a strong support system being a part of the community and their behavior due to the illness is easily accepted by the community who knows them. Therefore, when the person recovers from the illness, the community can help them become a functional member.
How can a community member help?
Building community awareness
Many mental health problems (such as depression, schizophrenia and others) can be effectively treated by working together with people who experience mental illness in their own homes and communities, using resources and support networks that are available to them. Awareness-raising campaigns and large-scale dissemination of knowledge and skills will help in reducing the stigma attached to mental illness.1 Activities such as street theater, wall writing related to mental illness effectively help in sensitizing the community members about the importance of mental health. “The constant exposure to such information helped in bringing awareness among the people about mental illnesses and hence reducing stigma,” says Dr Janardhana. He adds, “Persons with illness who have recovered after treatment and medication, will also make a positive impact on the community members."
1- Janardhana, N & Naidu, DM (2012). Inclusion of people with mental illness in Community Based: need of the day. International Journal of Psychosocial. Vol 16(1) 117-124