Half of the 40 million people who care for a family member or friend with a chronic illness or disability in the United States are performing complicated medical tasks, including giving injections, managing tube feedings, and handling medical equipment, often with little or no training or support, according to a report released Wednesday by AARP.
These caregivers bear heavier responsibilities—and greater emotional strain—than those who do not perform medically complex tasks, the report found. They are three times more likely to spend 20 hours a week or more providing care, and also twice as likely to help with basic activities of daily living, such as bathing and eating. Nearly half reported they felt depressed or hopeless compared to one-third of those who did not perform medically complex tasks.
Increasing demands on caregivers reflect the growing complexity of available medical treatments, growing numbers of people living longer with chronic conditions and a trend toward shorter hospital stays, among other changes, researchers for the report said in a presentation of findings Wednesday at the American Society on Aging conference in New Orleans.
“Caregiving is not what it used to be. It is intense and complex,” said Susan Reinhard, senior vice president and director at the AARP Public Policy Institute and lead author of the study. “We have to do a lot more to prepare these vital members of the caregiving team.”
The report, Home Alone Revisited: Family Caregivers Providing Complex Care, follows an initial report in 2012 that found similarly high numbers of caregivers providing medically complex care. That report prompted the creation of a “Home Alone Alliance” between AARP, United Hospital Fund, Family Caregiver Alliance, and the UC Davis-Betty Irene Moore School of Nursing to promote training and support for family caregivers. The alliance has produced a series of videos showing how to handle specific complex tasks.
The findings also fueled the successful passage in 42 states of the CARE Act, which requires hospitals to record the name of the family caregiver on the patient’s medical record and provide the caregiver with instructions about medical tasks he or she will need to perform at home.
With funding from The John A. Hartford Foundation and the AARP Foundation, the follow-up study took a more in-depth look at the specific medical tasks that family caregivers are doing and the diversity of caregivers doing this work. Findings were based on an online survey of nearly 2,100 family caregivers.
The report found that family caregivers perform a range of medical tasks. Nearly all — 82 percent — manage medications and about half prepare special diets and assist with canes or walkers or other mobility devices. More than a third — 37 percent — deal with wound care, and just under a third —30 percent—manage incontinence.
These growing responsibilities affect caregivers in all racial and ethnic groups and of all ages and across genders. Increasingly, caregiving tasks are being assumed by younger relatives that medical professionals may not recognize as family caregivers. One in four family caregivers is a millennial.
Social isolation is a common challenge. Many caregivers said they learned to do tasks such as wound care or managing incontinence on their own. About half said they worry about making a mistake. The majority said they had no choice but to take on medically complex tasks.
The report also showed some positive outcomes from performing more complex responsibilities. In particular, older caregivers, Generation X or Baby Boomers, said performing such tasks eased their worries about their family member’s condition, made them feel they were making an important contribution and taught them new skills.
“Family caregivers are the linchpin in our health care system, particularly for older adults,” said Rani E. Snyder, program director at The John A. Hartford Foundation, in a statement. She called the report is a “rallying cry for an all hands-on-deck approach” to creating a system that better prepares these “often forgotten members of the health care team.”
Michael Alison Chandler is managing editor at MemoryWell. Previously, she was a staff writer at the Washington Post for 13 years.