Family caregivers help with wider range of healthcare tasks than thought

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A Yale-led study finds that while many family caregivers assist older adults with serious health problems like dementia and disability, the majority aid adults without those issues. Caregivers are also helping with a much wider range of activities than previously thought, said the researchers.

The findings, published April 20 in the Journal of the American Geriatrics Society, highlight the need for more attention and resources for family caregivers to lessen the significant financial, emotional, and physical burdens they bear, said the researchers.

An estimated 6.6 million older adults nationwide receive some form of living assistance in their communities. The majority of individuals providing help are “family caregivers,” defined as family, friends, or neighbors. To estimate the number of family caregivers offering help to older adults and describe the assistance they give, the Yale-led team analyzed data from two nationally representative surveys of caregivers and older adults.

Using the 2011 National Health and Aging Trends Study and the National Study of Caregiving, the researchers also assessed caregiver “burden” — the emotional, physical, and financial difficulties experienced by caregivers. They analyzed how helping older adults limited caregivers’ participation in social activities, such as time spent with friends and religious groups.

“The big take-home was the largest absolute number of older adults who are getting help are people without dementia or disability,” said first author Catherine Riffin. “That’s important because this group has been largely overlooked in prior research.”

The research team also found that many caregivers are providing help beyond routine household tasks such as shopping, housework, and transportation. They also assist with multiple activities related to health maintenance, ranging from making doctor appointments and ordering medicines to diet and dental care.

The more tasks provided, the greater the burden for caregivers, the researchers said. Those caring for adults with dementia and disability reported the most burden, but nearly half of those assisting adults with less serious issues also said caregiving took a toll. A significant proportion of all caregivers limited their participation in social activities because of their caregiving responsibilities. 

“It’s an emotional and physical burden, and also compromises their participation in enjoyable activities,” said Riffin.

Overall, the study underscores the need for researchers and clinicians to engage in a broader assessment of all caregivers with the goal of providing appropriate assistance and resources.

Other authors on the study are Peter H. Van Ness, Jennifer L. Wolff, and Terri Fried.

The study was supported in part by the Claude D. Pepper Older Americans Independence Center at Yale School of Medicine, and by National Institute on Aging training grants.

Health & Medicine

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Ziba Kashef: ziba.kashef@yale.edu, 203-436-9317