Family caregivers: Pakistan’s overlooked second patients

ISLAMABAD, Jul 31 (APP)::Not every hero wears a white coat. Some spend years quietly caring for a child with autism, a parent with dementia, or a loved one living with a disability or mental illness. Their days begin before sunrise and end long after everyone else has gone to bed. They give their time, energy, and love without expecting anything in return. Yet while everyone asks about the patient, very few ask a simple question: How is the caregiver?

For many families in Pakistan, caregiving is a lifelong responsibility. Mrs. Nadia, a resident of Rawalpindi, who is caring for her daughter with a mental disorder for the past 30 years, said every day demands patience, strength, and sacrifice. “Looking after her daughter is emotionally and physically exhausting, but she continues because her child depends entirely on her.”

Kamran, a 40-year-old another Rawalpindi resident caring for his father who lives with dementia, told APP that the challenges extend beyond the home. He said caregivers often face social misunderstanding, with people staring, asking insensitive questions and failing to recognise the realities of the condition. “The most painful part is watching someone you love suffer while feeling helpless,” he said. Like many caregivers, Kamran acknowledged that he often neglects his own health while prioritising his father’s care.

Doctors say these experiences are common. Clinical psychologist Dr. Usama, practicing at the Pakistan Institute of Mental Health, explained that caregivers often suffer from stress, anxiety, depression, frustration, sleep problems and emotional exhaustion because they spend their time caring for others while neglecting themselves. He said caregiver burnout was not a sign of weakness but a natural response to long-term stress that should be recognised and treated early.

Caregiver burnout is becoming increasingly common as Pakistan’s need for long-term care continues to grow. According to the 2023 Population and Housing Census, the country has around 3.5 million persons with disabilities, nearly 1.6 percent of the population. Most depend on family members because rehabilitation centres, home-care services and long-term care facilities are limited. As a result, unpaid family members provide round-the-clock care, often sacrificing their own health, careers and personal lives.

Family caregivers of persons with disabilities often bear an invisible psychological burden that can be as debilitating as the physical demands of caregiving, according to a practicing psychiatrist Dr. Zainab. “Years of continuous caregiving, financial strain and social isolation leave many caregivers vulnerable to chronic stress, anxiety, depression and emotional exhaustion. Unfortunately, their mental health needs are rarely recognised because the focus remains on the patient,” the psychiatrist said.

The expert stressed that caregivers should be treated as “second patients” and recommended, respite care, support groups and financial assistance to reduce burnout.

International research echoes these concerns. Dr. Anthony Komaroff of Harvard Medical School says caregiving can bring emotional rewards but also place a heavy physical, emotional and financial burden on families. The World Health Organization says supporting caregivers is essential because healthier caregivers provide better care and improve patients’ quality of life.

Experts say the burden is made heavier by the limited support available in Pakistan. Affordable mental health services, respite care, counselling, caregiver support groups and workplace policies remain scarce. Many caregivers hesitate to seek help because caregiving is often seen as a moral duty, and admitting struggle is viewed negatively.

Many developed countries, including Canada, the United Kingdom and Australia, provide disability benefits, home nursing, respite care, counselling and caregiver support programmes. These services do not remove the challenges of caregiving, but they help families cope with emotional and financial pressure. In contrast, Pakistan offers very limited institutional support, leaving families to shoulder much of the physical, emotional and financial burden of long-term care.

Experts believe Pakistan needs to expand home healthcare, counselling services, caregiver support centres and financial assistance for families caring for persons with disabilities. Public awareness campaigns are also needed to encourage caregivers to seek help instead of suffering in silence.

Psychiatrists warn that caregivers are often the forgotten patients of the healthcare system. Psychiatrist Dr. Zainab, said supporting their mental health was essential because “a caregiver who is emotionally exhausted cannot continue providing quality care indefinitely.” Recognising caregiver burnout through counselling, respite services and social support is not just compassion,it is an investment in healthier families and a stronger society.