Aman Batish, Co-founder Manas Mitra & Member, State Mental Health Authority, Haryana (as a representative of caregivers)
Caregiving and its problems are important areas of concern in the domain of mental disorders and it is crucial to understand why caring for caregivers is an aspect worthy of greater attention. However, before specifically dealing with this issue, it is important to have some insight into the origin of these problems which often lie elsewhere -in the realm of human nature itself.
Seeking happiness is fundamental to human nature; we all want to be happy and avoid distress. In the Bhagavad Gita Chapter 2, verse 66 while talking about happiness, the Supreme Lord Sri Krishna reveals the secret of achieving this desirable objective to Arjuna:
nāsti buddhir ayuktasya na cāyuktasya bhāvanā na cābhāvayataḥ śāntir aśāntasya kutaḥ sukham
He says, “One who is not connected with the Supreme [in Krishna consciousness] can have neither transcendental intelligence nor a steady mind, without which there is no possibility of peace. And how can there be any happiness without peace?”
The first part of this verse deals with deeper spiritual realizations which are beyond the scope of this article and need not be further elaborated upon, being matters requiring personal experience. But the second part, even by mundane understanding, hints towards the most basic and primary requirements for achieving a state of happiness in life -A PEACEFUL AND STEADY MIND. It is not difficult to relate to this on the basis of one’s own life experience and it may be easily understood that there can be no real or lasting happiness without inner peace, which is not possible without a steady mind. The relevance of quoting this verse here is that in the context of caregiving it talks about the origin of the problem -no happiness without (inner) peace, the solution -a steady mind and even a strategy to execute the solution (beyond the scope of this article).
We perceive situations as happy or distressful based upon our beliefs about what is good or bad (and therefore happy or distressful) for us, which are further formulated on the basis of the conditioning and experiences that we have acquired in our life. However, fundamentally speaking, we are generally unhappy or distressed in two situations - a) when something undesirable happens and b) when our desires remain unfulfilled or unsatisfied.
The problems of caregiving
Most caregivers in general, and specifically those looking after a person with a mental disorder, frequently find themselves forced in to situations (often not in their control), which are perceived as distressful by them, during the process of caregiving. Such undesirable experiences can deeply disturb the inner peace of caregivers and cause great distress. Therefore, they are more prone to feeling stress, tension and what is known as the burden of care. This has also been corroborated and widely documented by scientific research dealing with caregiver burden in the domain of mental disorders. It has also been fairly well established by such studies that caregivers often need care and support themselves.
It is quite evident that any stress resulting from the process of caregiving may eventually prove detrimental not just for the caregivers but also for their beneficiaries and the very process of caregiving itself. It is therefore imperative that strategies are devised to relieve caregiver stress and reduce the burden of care to help and support caregivers.
As indicated in the first part, all effective strategies to reduce caregiver burden must focus on a) the problem side -the stressors disturbing inner peace and b) the solution side -a steady mind/ an effective coping mechanism. Recent scientific studies focusing on this subject have highlighted the effectiveness of some such strategies. A few of them specifically suited to caregivers of persons with mental disorders are discussed hereafter.
Family centric community living: This can be done by way of establishing communities (like group housings or farm-based communities for example) that have been envisioned and specifically designed to rehabilitate and meet the caregiving requirements of families looking after persons with mental disorders as a unit. Such families can then pool in resources and share their problems and solutions as well. A recent India based study documenting the benefits of such community-based rehabilitation (CBR) revealed that the out-of-pocket expenses of the families receiving CBR in availing treatment reduced to INR 492/- annually as against INR 15074/- annually without CBR. Further, the expenditure on medicines and psychiatric consultation reduced to zero. Another study has highlighted that, those receiving CBR showed significant improvement in outcomes of treatment, particularly reduction in disability vis-à-vis those not receiving CBR. Scientific evidence has certainly pointed favourably towards community-based rehabilitation as a strategy, especially w.r.t caregiver support and it may provide the solutions to their specific concerns and issues.
Spirituality based therapy: This is a less explored but potentially important approach towards reducing the perception of burden and stress in caregivers. Quite often during the caregiving process the caregivers feel compelled to ask and deal with questions that may be better addressed in the domain of spirituality than through conventional approaches. Spiritual solutions may provide much needed comfort, solace and an effective support mechanism for easing the burden of care. A recent study on caregivers of patients with Alzheimer’s disease pointed that spiritual care can reduce care strain in such caregivers. Another India specific study also highlighted the importance and prevalence of religious coping in Indian and eastern culture. By way of personal experience as well, it is safe to say that spiritually oriented people have greater inner strength to cope with stress by virtue of their belief system being based in spiritual knowledge. More scientific evidence may be needed to say anything conclusive in this matter as of yet, but spirituality and spiritual knowledge may never the less be used as a supportive strategy -the effects may be notional but the benefits can be real.
Yoga and other alternative therapies: Yoga and pranayama-based therapies have been found to be beneficial not just for physical fitness but also for mental and holistic wellbeing. Yoga was found to increase the level of functional recovery in Schizophrenic patients. These techniques can certainly benefit in reducing the stress of care as well.
Assessment and appraisal of caregivers: Frequent assessment of care associated stress using scientific tools and measures can play a critical role in providing timely and appropriate support to caregivers. Using tools like Burden Assessment Schedule can help identify the important predictors of burden in caregivers. For example in a recent India based study duration of illness and perceived social support were found to be significant predictors of caregiver burden. Such tools can help in assessing the vulnerability of individual caregivers and help in formulating suitable mitigation strategies also.
Other strategies: Provision of facilities such as half-way homes or other similar rehabilitation measures to provide respite to caregivers can also prove useful.
Caregiver stress is a real and important issue in dealing with mental disorders. It can become a stumbling block in the effective management, treatment and rehabilitation of persons with mental disorders if left unattended. Educating caregivers about effective coping strategies and facilitating the implementation of these strategies can be most helpful in reducing the burden of care.
Reducing the burden of care and supporting the caregivers is like watering the roots of a plant, it is the most effective way to hydrate and heal the entire plant. Adopting merely a patient-centric approach for treatment and rehabilitation is like watering the leaves directly -it may be necessary at times and have instantaneous benefits in acute conditions, but from a long-term perspective and a holistic point of view the benefits may turn out to be only superficial.
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