Around 450 million people worldwide are suffering from some mental or behavioral disorder according to the WHO, of which schizophrenia, bipolar disorder, depression, and alcohol use disorders are important causes for years lived with disability. According to the evidence available, in India, about 190–200/1000 population have a psychiatric or mental disorder, this accounts for about 20% of the whole population. The major issues faced in India regarding mental health are lack of mental health workforce, financial aid, stigma, and caregiver burden.
Many of us at some point while taking care of mentally ill patients in our lives would have experienced the tug between the desire to care for our loved ones, and the stress that comes with that responsibility.
Dealing with those feelings at a personal level is challenging and even harder as it is deeply ingrained in us to be there for the family at the cost of your health and your mental health.duty and expectations are deeply intertwined with love and kinship.
A caregiver has been defined as “a family member, who has been staying with the patient for more than a year and has been closely related with the patient's daily living activities, discussions, and care of health. Caregivers often have to sacrifice their own wants and undertake a lot of stress and are very much ignored.
When we talk about the caregivers, many questions arise in the mind. How to help a patient with severe chronic mental illness? Rise in nuclear families and poor institutional support, what options do we have? Frequently, we face such questions from the aging parents, who may be the only caregivers. Then there are some patients, who may be living alone? Or the only caregiver is the spouse, who has to earn a livelihood to survive and also has young children to take care of.
The concept “caregiver burden” was first introduced by Treudley in 1946 as the negative impact of caregiving on caregiver's mental health and quality-of-life. It has two dimensions: objective and subjective. The objective burden refers to the tangible effects of the caregiving on the family such as disrupted family routines, constraints on family's social and leisure activities and financial costs, whereas the subjective burden includes the caregiver's negative appraisal of circumstances such as feelings of loss, guilt, shame, and anger.
The caregivers caring for their patient with mental illness feel stressed, anxious and low, since the illness tends to be chronic and demanding. there may occur burnout and emotional exhaustion.This continuous stress of caregiving may affect the physical and mental health of the caregivers. It can also lead to poor quality of caregiving for those under their care as well leading to adding the possibility of abuse of the patient and further deterioration of the patient’s condition.
The most frequent statements caregivers give pertaining to dealing with mental health patients are:
People stop coming to the house. Even close relatives are reluctant to come.”
“The children are unable to concentrate on studies because of the problems their father created.”
We have to leave one person at home for him when we are away. We all keep on worrying about him for the whole day.”
Whenever she stops treatment, she loses temper and does whatever she wants to do. But we have to bear with it because we know it is not in her control.”
“There is a major financial problem, whenever he is not earning regularly due to illness.”
HOW TO HELP IN REDUCING CAREGIVER BURDEN:
The psychoeducation sessions with the families include a brief introduction to the illness, presenting symptoms, early signs of relapse, available treatments and their efficacy, safety of treatment, common side-effects, treatment related costs, identifying burden, and coping methods.
Day-to-day problems in the management of patients should be discussed, and simple and practical solutions may be offered. Simple behavioral interventions like anxiety and stress management may be undertaken.
Self-compassion: be kind and understanding about yourself instead of criticizing or blaming yourself for the illness of the patient.
Energizeyourself: make an attempt to regularly participate in activities that energize you in the form of hobbies and have me-time.
Set goals you can reach:
Break large tasks into smaller steps that you can do one at a time. Make lists of what's most important. Follow a daily routine. Say no to requests that are draining.
Take care of physical health:
Find ways to sleep better. Move more on most days. Eat a healthy diet. Drink plenty of water.
Ask for help:
Asking for help is a sign of strength, not weakness. Reach out to those closest to you, and don’t be scared to seek support from professionals. We are not supposed to bear life’s burdens alone – so use your community.
Lastly, taking care of yourself is not selfish. No matter who you are or what your circumstances are, it is important that you take care of your physical, emotional, and spiritual self.
Dr. Damanjit Kaur (MD Psychiatry)