Families provided $470 billion in unpaid care to loved ones in 2013

(Reuters Health) - Family caregivers in the U.S. provided an estimated $470 billion in unpaid medical support and other services to their loved ones in 2013, up from $450 billion five years earlier, according to a recent report from AARP.

Those unpaid services are worth more than total Medicaid spending for 2013 and also more than annual combined sales that year from the four largest U.S. technology companies (Apple, Hewlett Packard, IBM and Microsoft), researchers say.

An estimated 40 million family caregivers worked an average of 18 unpaid hours each week helping spouses, parents, partners and other loved ones, AARP estimated.

Almost half of the caregivers performed complicated tasks such as giving injections, operating medical equipment, and wound care.

“Providing care for a family member, partner, or friend with a chronic, disabling or serious health condition – known as ‘family caregiving’ – is nearly universal today,” lead report author Susan Reinhard, director of public policy for AARP, said by email. “It affects most people at some point in their lives.”

To assess the scope of unpaid care and services, Reinhard and colleagues analyzed data from 11 surveys of family caregivers done between 2009 and 2014.

All of these surveys included caregivers and patients over the age of 18, and questioned participants about whether family caregivers currently or within the past month provided help with daily activities such as bathing or dressing or assistance with other tasks like managing finances or preparing meals.

In 2014, 60 percent of caregivers were employed at least part-time, and 40 percent of the working caregivers were at least 50 years old. One analysis found that many of these workers are providing 21 hours a week of unpaid care in addition to their paying jobs.

One in five workers left their jobs earlier than planned to help care for a loved one, losing an estimated $300,000 in income and benefits each, on average.

Family caregivers generally provide so much unpaid help because their loved ones need a variety of different assistance that’s hard to get from one provider and due to a lack of affordable alternatives, said Carol Levine, director of the families and health care project at the United Hospital Fund, a nonprofit research and philanthropy organization in New York.

“For those who provide long-term care for years and for those with particularly demanding situations – caring for someone with dementia, for example – the detrimental effects on caregivers’ mental and physical health, financial status, employment, and on other family relationships have been well documented,” Levine, who wasn’t involved in the study, said by email.

Family caregivers may benefit from strengthened relationships with their loved ones, as well as a sense of satisfaction from making it possible for loved ones to remain at home instead of moving to an institutional setting, Levine noted.

“There are potential upsides,” she said.

For many families, unpaid care provided to loved ones might be scaled back if more social services and medical assistance was available, particularly for complex tasks that can be difficult to master without clinical training, said Barbara Given, a nursing professor at Michigan State University in East Lansing.

The best time to assess resources in the community is before loved ones become too infirm to care for themselves without help, Given, who wasn’t involved in the study, said by email.

“For all families, as people are aging or have chronic disease, families should have discussions about the plans they will have for care and discuss some of their preferences,” Given said. “They should become aware of community resources, and they should identify a health care professional, physician or nurses who they are able to talk to and seek out for assistance when they do need to provide care.”

SOURCE: AARP Public Policy Institute, online July 16, 2015.