Caregivers under-trained, overwhelmed, says poll

WASHINGTON — Adults in the United States who are providing long-term care for aging relatives and friends have little training for their stressful roles, but plenty of commitment, according to a poll.

The Associated PressNORC Center for Public Affairs Research survey finds that caregivers don’t just give rides to the doctor and go shopping. Nearly half provide some kind of medical care, from changing bandages (30 percent) to inserting catheters or feeding tubes (6 percent).

Only 47 percent of those say they got most or all of the training needed for their often delicate tasks.

Despite all the challenges, more than 9 in 10 call their care-giving experience worthwhile, even if they also find it stressful (77 percent), and overwhelming (52 percent).

“It’s a labor of love, but it can be stressful,” said Cheryl Johnson, a factory supervisor from Bay Minette, Ala., who along with other family members is caring for her elderly mother and stepfather. “Nobody can ever be prepared for that.” Her mother has liver disease.

The poll of people age 40 and over who have either provided or received long-term care offers a glimpse into homes where aging and disabled people are being cared for by an ad hoc army of relatives, neighbors and friends.

It highlights how long-term care remains a major unmet need for government programs and private health insurance.

The lack of training for caregivers is a shortcoming in the health system, said Judy Feder, a professor at Georgetown University McCourt School of Public Policy.

“Caregivers are taken for granted and they are invisible in the system,” Feder said. “It’s bad for them, it’s bad for care recipients, and it’s bad for the system because there’s evidence that if you engage them, it improves the quality of care.”

Some switch to part-time jobs; others say they’ve endured serious repercussions. Eight percent say they were excluded from job growth opportunities, 7 percent had their roles or responsibilities changed, and in rare cases, some report being fired or asked to resign. (The federal Family and Medical Leave Act applies only to larger employers.)