Rosalynn Carter Institute Finds Caregivers Are in Crisis

As we are now well aware, COVID-19 has brought about a second health emergency, which is a pandemic of loneliness and isolation among older adults adhering to mandated social restrictions. The Rosalynn Carter Institute for Caregiving (RCI), realizing such restrictions may also have an outsized impact on caregivers of older adults, studied the issue and on Oct. 8 published “Caregivers in Crisis: Rosalynn Carter Institute Report Sounds the Alarm on Caregiving in the Time of COVID.”

The Institute had received what it called a “steady stream of informal reports from the caregivers served by RCI regarding the increase in their stress,” so it set out to survey the caregiving experience during the pandemic, changes in stress levels and causes of that stress. The report also measured changes in caregiver/care recipient relationship and changes in access to supportive services.

Although the study sample was relatively small at 422 caregivers, and limited to people already connected to services and to the Internet (which leaves out potentially more isolated caregivers), the findings are still stark and well worth paying attention to.

Overall the survey indicates a decline in the physical, mental and emotional state of caregivers. And as their well-being has declined, so, too, their relationships with care receivers have suffered. Plus, the caregivers’ ability to access services has decreased.

A full 83 percent of caregivers surveyed reported increased stress related to caregiving since the pandemic’s beginning; 42 percent noted that there were far fewer caregivers in their circle available to help them; and key sources of stress were additional caregiving or household duties, and worry over infecting family members. Other stressors included financial concerns, instability and lack of resources.

“The stress has increased because self-care has become a thing of the past,” said one survey participant.

Financial stressors included employment or lack thereof, out of 70 respondents that cited this as a financial stressor 46 had lost income or wages due to a layoff or furlough; and 53 percent had lost income due to a temporary closing or slowdown of their own business.

Regular doctor visits were delayed by 80 percent of respondents, dental care by 63 percent.

Some respondents expect to return to work, but this was another source of stress as 75 percent of these same respondents are very worried about becoming infected with COVID-19.

Generally one would hope caregivers with this level of stress would seek support, but the survey found such support lacking. When asked “What is the biggest challenge over the past 2-3 months for you personally to your role as a caregiver?”; many responded that it was increased social isolation. When isolated they are unable to access needed services and activities.

“The isolation has been the biggest hurdle,” said one respondent. “Not being able to participate in activities that get me out of the house has made me frustrated and resentful.”

Care recipients are also feeling the isolation, in some cases causing a deterioration in their well-being, too. “Because of isolation, my wife’s Alzheimer’s condition deteriorated quickly and I was no longer able to care for her. She is now in a memory care facility,” said a respondent.

Relationships between caregivers and care recipients are also evolving due to the pandemic, with 55 percent of respondents reporting an increase in frequency of contact, and 39 percent saying that their personal connection with the care recipient had increased since the pandemic. Oddly, though, due to stress, respondents also said their closeness and ability to communicate well with care recipients had declined. Relationships changed due to constant care provision, which was tough to manage.

At the same time, there is a lack of consistency in available resources to help. Caregiver support groups are being used, but still needed by many more.

The report includes many helpful recommendations for aiding these caregivers: increase access to peer support; create more comprehensive virtual community-building resources to combat social isolation and loneliness; and increase awareness of, access to and availability of respite options (supplementing with virtual options); also practical support needs to be bumped up, including help with food, supplemental childcare and education support, home health workers and home cleaning services.

“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 healthcare system is in danger of collapse.”