Public Release: 

Caregivers likely to experience emotional, physical, financial difficulties

The JAMA Network Journals

Being a caregiver for an older adult isn't easy. A new study suggests that family and unpaid caregivers who provide substantial help with health care were more likely to miss out on valued activities, have a loss of work productivity and experience emotional, physical and financial difficulties, according to an article published online by JAMA Internal Medicine.

Almost 8 million older adults with significant disabilities live in the community with help from family and unpaid caregivers. Caregivers not only provide most assistance with everyday activities but they help with a range of health care activities, including physician visits.

Jennifer L. Wolff, Ph.D., of the Johns Hopkins Bloomberg School of Public Health, Baltimore, and coauthors used data from two nationally representative samples that provided insight into older adults and the caregivers who help them. The study included 1,739 family and unpaid caregivers of 1,171 older adults. The caregivers provided substantial, some or no help with health care, which was defined as coordinating care and managing medications.

The study sample represented 14.7 million caregivers assisting 7.7 million older adults, of which 6.5 million caregivers (44.1 percent) provided substantial help, 4.4 million (29.8 percent) provided some help and 3.8 million (26.1 percent) provided no help with health care.

Among older adults receiving substantial help with health care activities, 45.5 percent had dementia and 34.3 percent had severe disability, according to the study.

Caregivers who provided substantial help with health care were more likely to:

    Live with older adults
  • Experience emotional, physical and financial difficulty
  • Participate less in valued activities, such as visiting friends and family, going out for fun, attending religious services, and participating in club or group activities
  • Report loss of work productivity
  • Utilize supportive services, although only about one-quarter utilized such services

Due to the nature of the study, the authors cannot draw cause-and-effect conclusions.

"Because the magnitude and scope of assistance provided to disabled older adults by family and unpaid caregivers far exceed those of paid caregivers, and because their involvement persists across both time and settings of care, devising organizational strategies and health care practices to identify and more purposefully engage and support family caregivers merits greater attention by health system stakeholders seeking high-value care," the study concludes.

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JAMA Intern Med. Published online Feb. 15, 2016. doi:10.1001/jamainternmed.2015.7664. Available pre-embargo to the media at http://media.jamanetwork.com.

Editor's Note: The study includes funding/support disclosures. Please see the article for additional information, including other authors, author contributions and affiliations, financial disclosures, funding and support, etc.

Commentary: Putting the Spotlight on Invisible Family Caregivers

"The study by Wolff and colleagues confirms and extends the existing knowledge about family caregivers who provide the most demanding levels of care for older adults at high risk of poor outcomes. Shining the spotlight on invisible family caregivers is just the first step, but it may be the most important," writes Carol Levine, M.A., of the United Hospital Fund of New York, in a related commentary.

JAMA Intern Med. Published online Feb. 15, 2016. doi:10.1001/jamainternmed.2015.8002. Available pre-embargo to the media at http://media.jamanetwork.com.

Editor's Note: Please see the article for additional information, including other authors, author contributions and affiliations, financial disclosures, funding and support, etc.

Media Advisory: To contact corresponding study author Jennifer L. Wolff, Ph.D., call Stephanie Desmon at 410-955-7619 or email sdesmon1@jhu.edu. To contact commentary author Carol Levine, M.A., call Bob de Luna at 212-494-0733 or email rdeluna@uhfnyc.org.

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