The study, one of very few conducted on unpaid caregivers, suggests caregivers who provide “substantial help” to stricken relatives often endure their own setbacks along the way.
Researchers say those involved in intensive caregiving for loved ones were about twice as likely to experience physical, financial and emotional difficulties as those less involved. In cases where caregivers also work and provide for their own families, caregivers are three times more likely to be less productive on the job due to the burden of related distractions and fatigue, according to the analysis.
The study is thought to be one of the first national surveys to assess the well-being of caregivers who take on the primary responsibilities of caring for incapacitated loved ones. The research suggests those who are intensely focused on the health and well-being of a disabled family member or friend were more likely to ignore important aspects of their own lives.
“Families are really invisible, even though they’re commonly attending medical visits or they’re involved when someone’s in the hospital, managing the transition back home,” said study author Jennifer Wolff. She is an associate professor of health policy and management at Johns Hopkins Bloomberg School of Public Health in Baltimore.
The study published in the Feb. 15 online edition of JAMA Internal Medicine shows that caregivers see themselves as daughters, sons, spouses and friends as opposed to “caregivers,” says Carol Levine, director of the New York City-based United Hospital Fund’s Families and Health Care Project. Some feel uncomfortable and others are too overwhelmed to join support groups and take advantage of their services, says Levine.
In many cases, family members feel as though they cannot share their angst with others for fear they will suggest a different arrangement. In cases where there is only one caregiver, health issues linger for caregivers as do many sad and often traumatic memories of situations they experience.
“By expecting family members to do all this stuff with relatively little support, we’ve created a multigenerational set of health problems, and so I think it’s extremely concerning,” Levine said.
The study included data from two national surveys: Wolff and colleagues estimated that 14.7 million unpaid caregivers in the United States — mostly family members — assist 7.7 million older adults. Nearly half of the older adults have dementia, and more than a third have a severe disability.
Adding to the trauma of watching a loved one suffer, they are often the only ones asking questions about treatments, giving injections and managing medications — a stressful role that can take an emotional toll on them, said Levine.
Meanwhile, family members and friends who become caregivers to severely disabled people or loved ones suffering from terminal illness often go without psychological support and do not seek health care for themselves because there is only so much time in the day. They’re overwhelmed, too focused on their dependent’s doctor appointments and performing tedious, difficult tasks for their disabled loved one.
