Swetha (name changed), a 27-year-old schoolteacher from Tamil Nadu, faced a traumatic turn of events when her 62-year-old father was left paralyzed throughout his right side due to a massive stroke. A stroke occurs due to a blockage in blood vessels supplying the brain and requires urgent treatment for complete reversal of the paralysis.
The nearest hospital was 3 hours away, and by the time they arrived, it was too late to effectively and ultimately reverse the blockage in the blood vessel.
Swetha had already experienced emotional and financial turmoil when her mother lost her prolonged battle with cancer, depleting their savings. Now with her father, once a healthy farmer, left dependent on her, Shwetha was overwhelmed. She was uncertain how to juggle the responsibilities of caring for her two children, her career, and now her father.
Sadly, stories like Swetha’s are very common in India, even with the latest advances in modern medicine. Stroke is the second most common cause of death and the fourth leading cause of disability worldwide. For one in five survivors, long-term institutional care becomes necessary, and one in three survivors becomes partially or wholly dependent on their family members, intensifying the burden.
Regrettably, India lacks comprehensive studies about the problems of the caregivers to stroke patients - especially the financial burden.
Based on the findings from a survey, in 2017-18, families were found to be spending an average of INR 40,360 per episode of stroke-related hospitalization. This, however, is just the amount paid directly when seeking healthcare. Along with this, many indirect costs also add to the financial destruction due to the disease. These include loss of wages of patients and caregivers due to absence from work and the cost of travel to the health center, among others.
These expenses significantly add to the financial burden and often go unnoticed. The economic destruction of the disease is frequently disproportionately more on the economically weaker sections of the society.
It has been noted in Western societies that organized provision of care in a stroke unit is associated with better survival, sooner return to home, and better functional independence in the activities of daily living of stroke survivors. Such stroke units contain trained professionals such as occupational therapists, physiotherapists, speech therapists, and dieticians.
