Great Toll on Unpaid Caregivers Helping Loved Ones

Unpaid Caregivers Family members and friends care for ill or aging seniors out of love, dedication, a sense of obligation, financial need and/or lack of alternatives. However, research shows that the efforts of those unpaid caregivers helping loved ones ultimately takes a great toll on their physical, mental and fiscal well-being.

As the population ages, more family and friends are picking up the slack and helping older people who may have disabilities, are unable to drive anymore or are just frail and in need of help. That may mean simple tasks like coordinating and driving them to doctor appointments, doling out medications (or at least putting them in those little holders by day and time), or buying groceries or prepackaged meals the person can reheat. It could be more complex and physically exhausting support like helping them go use the toilet or bathe. Even if the person needing help can afford a professional caregiver, the responsibility for coordination and filling in, when needed, still falls on family or friends.

New research published in the Feb. 15 JAMA Internal Medicine discusses the stressful, emotional and financial impact on unpaid caregivers. In fact, the study, conducted by a Johns Hopkins Bloomberg School of Public Health research team, indicated that caregivers, weighed down by fatigue and distracted by their personal situation, are three times as likely to have diminished productivity at work or in their routine endeavors. An estimated 20 percent missed work at least once in the month before the survey because of their caregiving responsibility. As a result, there is a considerable impact on other parts of the caregivers’ lives, such as unrecognized costs borne by their employers.

Caregivers are also five times more likely to miss out on important things in their own lives, such as putting off their own doctor visits and social engagements. The research showed that 28 percent of caregivers who provided significant help and 13 percent of those providing some help missed out on time for their own social life.

Noting that caregivers generally serve as key players in supervising the health care of those in their care, Jennifer L. Wolff, PhD, a Bloomberg School Health Policy and Management associate professor, pointed out that they make sure that treatment plans are followed and medications are taken at home. As such, they need to be included as a member of the health care team and given access to the patients’ health information, dietary restrictions and treatment plans. This access is a challenge because of the Health Insurance Portability and Accountability Act and its patient privacy laws.

Wolff also noted, “Little attention has been directed at understanding the extent of or consequences for this unpaid and invisible workforce that is vital to the care of the chronically ill.” Their study attempted to do this.

The researchers analyzed data gathered in the 2011 National Health and Aging Trends Study from 1,739 unpaid caregivers for 1,171 elderly adults. Findings showed that:

  • Caregivers who provide substantial care are more likely to reside with the older adult in their care than those who did not get actively involved with their health care activities (61.1 percent and 37.6 percent respectively),
  • Those providing substantial help are more likely to suffer from emotional difficulties (34.3 percent versus 14.6 percent), physical difficulties (21.6 percent versus 5.7 percent) and money issues (23 percent versus 6.7 percent) related to their unpaid caregiving responsibilities, and
  • Providing substantial help with health care needs demands far more time from the caregiver (28.1 hours per week compared to 8.3 hours per week).

Estimates are that there are now 14.7 million unpaid caregivers, most of them family, in the U.S., who help approximately 7.7 million seniors. Of those, an estimated 6.5 million caregivers provide substantial help with health care. More research needs to be done on the toll helping loved ones takes on unpaid caregivers.

Written and Edited by Dyanne Weiss

Johns Hopkins Bloomberg School of Public Health: ‘Invisible work’ takes toll on unpaid caregivers
JAMA Internal Medicine: A National Profile of Family and Unpaid Caregivers Who Assist Older Adults With Health Care Activities
Reuters: Family caregivers may be sacrificing their own health to help loved ones Helping With Health Care Takes Heavy Toll on Caregivers

Photo courtesy of Ralph Zuranski’s Flickr Page – Creative Commons License

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