Caregivers in Crisis: Rosalynn Carter Institute Report Sounds the Alarm on Caregiving in the Time of COVID

AMERICUS, GEORGIA – Just days before World Mental Health Day on October 10, the Rosalynn Carter Institute for Caregiving (RCI) today released “Caregivers in Crisis,” a report on the impacts of the COVID-19 pandemic on the mental health and well-being of caregivers. In a survey of more than 400 caregivers from 46 states, the vast majority – 83 percent – reported increased stress related to caregiving since the start of the pandemic. 

Participants also reported a decrease in help and support, increased isolation, concerns about financial instability, and a debilitating impact on their overall mental and physical health. 

“This report reinforces our worst fears about the 53 million caregivers nationwide and the many more who are beginning their caregiving journey because of the pandemic.” said Dr. Jennifer Olsen, Executive Director of the Rosalynn Carter Institute for Caregiving. “This is our emergency room moment; and if we do not begin to seriously address the needs of caregivers and provide the necessary supports, this indispensable, largely invisible component of our health care system is in danger of collapse.” 

The survey, administered between June 2 and August 1, was funded by RCI’s partner, the Bristol Myers Squibb Foundation. 

“Since the pandemic started, traditional supports and services that have been a lifeline to unpaid family caregivers have been diminished or in some cases cut off completely, leaving caregivers – an already vulnerable population – at greater risk for burnout, stress, and declining mental and physical health,” said John Damonti, President of the Bristol Myers Squibb Foundation. “This data from RCI must serve as a call to action, to act quickly to support those who provide our community’s most critical care.”  

With increased health and safety COVID restrictions being imposed on an already overburdened medical and home care workforce, unpaid home and family caregivers are being increasingly relied upon to provide complex care in the home – often without any training, respite, or ongoing support. In the survey, caregivers shared candid and heartbreaking reflections on their experiences as the pandemic continues.  

  • “He has become very violent and the drinking is out of control. [He has] major mood swings and he is also creating damage in the home and cleaning is taking up most of the day.” 
  • “Feeling alone, isolated, no help, not able to get out, not able to get respite care, loneliness and sometimes depression.” 
  • “Taking care of 5 small children and a teenager and the home and myself and my wounded warrior … with no help. Goodness, I can’t believe I’m not crazy.”  

In some cases, caregivers reported extreme challenges, including becoming homeless in one case, or dealing with suicidal thoughts in another. 

  • “The stress has increased because self-care has become a thing of the past. There is no time for that because my veteran has regressed so much in his progress due to the stay-at-home order and COVID-19 pandemic situation.  He is having more PTSD symptoms and more suicidal ideation, which means he needs to be watched more.” 

“Reading these comments is a sobering reminder of the tremendous pressure that caregivers are under,” Dr. Olsen added. “RCI programs are designed to improve the health, strength, and resilience of caregivers, which is absolutely essential, but it isn’t enough. We need to take a holistic look at health care and community-based supports so that contributions of caregivers are recognized, and their needs are met.” 

Other key survey findings: 

  • Caregiver burden and stress is impacting the well-being of caregivers, leading to increases in depression and anxiety, and decreases in overall health and wellness. 
  • Caregivers surveyed indicated a decline in support received, from family and friends to adult respite. 

In analyzing the survey results, RCI offered several recommendations for policy and programmatic changes that could lead to improved health and resilience of caregivers, including in times of crisis or increased stress. Some of these recommendations are in direct response to the pandemic, while others address longstanding challenges that have been exacerbated. Recommendations include increasing access to counseling and telehealth services, expanding caregiver workshops and coaching, connecting caregivers with peer support, expanding paid family leave policies, building better respite options, and strengthening support for basic needs like food assistance and home health workers.  

To learn more about RCI’s programs and record of advocacy, visit www.rosalynncarter.org.