AARP study shows depth of family caregiver challenge

Thursday, May 16, 2019

Home Alone Caregiver ReportWhen AARP published its Home Alone report in 2012, it was the first comprehensive national look at how families were managing caregiving responsibilities. Seven years later, the organization has updated that foundational work with a new report, Home Alone Revisited, which seeks a deeper understanding of the experience of family caregivers.

At Council on Aging, we were particularly interested in this work because it aligns closely with our ongoing employer-based study of caregiver issues. This workplace survey is helping us identify specific needs of families in our area. COA will apply that understanding to work with businesses, communities and other organizations to create awareness and provide the support our families and our regional economy will need in the the future - especially as the region’s older adult population grows exponentially over the next 10 years.  

Among the major findings of Revisited are that the pressures on family caregivers are greater than at almost anytime in our modern history. For example, it reveals that caregivers are called on to provide more intensive and complex care than in earlier generations. Many of the tasks that formerly were performed by health care professionals—such as managing medications, testing and caring for a loved one with a mental or behavioral condition—are now left to family caregivers.

Some of this is due to the changing nature of our health system as a whole. Among family caregivers of those hospitalized in the past year, 60 percent reported they were asked to perform daily health care tasks for their loved one after discharge. And there is often a greater cost to those caregivers than just their time and labor.

The study also found that those caregivers who perform skilled care tasks face greater worry, stress and other negative impacts that can affect the rest of their lives, including family relationships and their work. Loss of sleep was frequently cited. Many stated that, after only a cursory explanation, they were more or less left on their own to learn how to perform the additional tasks. Most notably, those without support in executing skilled care activities were less confident in the quality of care they were providing, leading potentially to a cycle of negative outcomes.

The study concludes with some concrete actions that employers, communities and health care providers can take to address the modern caregiver challenge. Among other things, Home Alone Revisited prescribes increased awareness of how common family caregiving has become and the demands and costs to caregivers, their families and their employers. It calls for providers and employers alike to improve their ability to recognize and instruct family caregivers and to offer information and support that is both community- and workplace-based.

A holistic approach is essential to address the modern caregiver challenge, requiring communities, businesses and health care professionals to coordinate their support efforts. As the study notes in its conclusion, we can’t go back to the “good old days,” if such a time ever really existed beyond our imaginations. Supporting and strengthening caring families and communities requires long-term, forward-looking solutions.

To see the AARP study Home Alone Revisited, go to this link. If your organization would like to participate in our workplace caregiver survey, click here to provide your contact information. If you or someone you know needs help with caregiving right away, contact us at (513) 721-1025.