Dealing with a chronic or degenerative medical condition can be isolating, as well as painful — and not just for patients. In millions of homes across the United States, family members are caring for a parent or older relative, with little or no coordinated help. It taxes them financially, physically, and psychologically. A new study of more than 1,700 family caregivers helps to quantify the price they are paying. It also highlights the crucial part they play in the way health care is delivered, and makes a convincing case for granting family caregivers equal access to medical data doctors share among themselves.
The study, conducted by researchers at the Johns Hopkins Bloomberg School of Public Health in Baltimore, and published by JAMA Internal Medicine, found that about 14.7 million unpaid caregivers assist 7.7 million — mostly older — adults, many of whom have dementia. Family caregivers can be overwhelmed and exhausted, so focused on tending to the needs of a loved one that they make decisions detrimental to their own well-being. Some eat poorly and stop exercising. Others give up social activities that reduce stress, or they struggle to stay focused on the job. For instance, the study found that people responsible for the in-home health care of an older adult were more than three times as likely to “experience work productivity loss” as someone who didn’t take on such duties.
The role of family caregivers will loom larger as providers are pressured to improve efficiency while cutting costs. Decreasing the number and frequency of hospitalizations is critical to such efforts, and it means more older patients are being sent home sooner than they might have been a few years ago. Once patients are discharged, their families usually are left to cope with issues like drug dosing, wound care, and the monitoring of vital signs. They might not know where to find assistance, simply don’t have the time to look for it, or worry that insurance won’t cover enough of any added costs.
“We have highly trained providers in a highly regulated environment, and we release patients into the care of their families, who often are left hanging,” says Jennifer Wolff, the study’s lead author and an associate professor at the Bloomberg School of Public Health. Those families are “invisible” to medical professionals, Wolff says, despite the essential care they provide around the clock. “They have less access to the information that they need to manage care.”
The study raises awareness of the work that family caregivers perform on a daily basis, but it also should prompt change. Patients suffering from dementia are not capable of retrieving and analyzing their own medical records. Meanwhile, doctors are reluctant to release patient records to someone else — even a daughter or son — because of privacy concerns. Giving family caregivers password credentials to access to their relatives’ electronic medical records would be a practical step toward connecting them with doctors, nurses, and hospitals to manage care.
“There’s a big opportunity for the system to better understand who is really providing care for patients at home,” says Wolff. That includes insurance companies, which must broaden their definition of health care “provider” by offering reimbursements for expenses like ramps and safety rails that make at-home care easier and safer.