Being a family caregiver is a lot harder than it used to be. Providing personal assistance, such as help eating or bathing, is tough enough. But now, many  family caregivers are acting more like nurses. They have to manage medications, change dressings on wounds, and even monitor and operate  medical equipment, from home dialysis to mechanical ventilators.

According to a new survey by the AARP Public Policy Institute and the United Hospital Fund, nearly half of all family caregivers are providing medical or nursing services to their loved ones. This level of assistance not only puts far more pressure on these family members, it also creates new risks for those receiving care from people who treat them with the best of intentions but have little or no training.

Yet the health system has done next to nothing to recognize this new, more intense level of care by family members. For instance, half of those doing wound care, such as changing dressings or treating bed sores, said they learned how to perform these tasks on their own or from a friend or neighbor (though some reported getting help from medical professionals as well). Not surprisingly, almost half said they are afraid of making a mistake.

If paid caregivers were providing the same assistance, they’d be subject to strict licensing, training, and educational requirements. In many states, certified nursing assistants are barred by law from performing many of these tasks, ostensibly because they do not have the skills. Yet, the medical system seems perfectly OK with leaving this work to family members who often have no training at all.

Often, these caregivers are providing this high level of assistance in an effort to keep loved ones with chronic disease at home and out of care facilities. More than half report doing so  because they cannot afford paid care and no-one else is available to help. 

About 40 percent of family caregivers surveyed were adult children caring for parents and about 20 percent were spouses (usually women). However, spouses were twice as likely to be providing both nursing care and personal assistance as personal assistance alone.

Those receiving care were likely to be suffering from stoke, arthritis, dementia, cardiac disease, or diabetes. Often those receiving nursing-type care suffered from more than one of these illnesses.

This trend towards higher levels of care is only going to grow. The Baby Boomers are aging and living longer with chronic disease. Under pressure from Medicare, hospitals are discharging patients “quicker and sicker.” Increasingly those with chronic illness are resisting nursing home care. And the costs of paid care are outpacing the ability of families to pay.

At the same time, Medicare has begun to penalize hospitals that readmit too many patients. It would be interesting to see how readmission rates compare between those families that ar serving as DIY nurses, and those who can afford paid assistance. 

Family caregivers are the bedrock of our care system. The AARP/United Hospital Fund study helps us understand how important they are. I hope it will be a first step in encouraging insurers, policymakers, and medical providers to give these family caregivers the support they need.