Contrary to What You Might Think...

Majority of caregivers report coping better with the ongoing COVID-19 pandemic than people who are not caregivers!

Who hasn't been affected by the impacts of COVID-19? We all have, personally and professionally. This pandemic has thrown us into change, isolation and struggling to cope...sometimes well and other times not-so-well. Yet, while most of us are working to build the necessary resilience to deal with it all, it turns out that those stressed out folks who have carried the burden of caring for their aging, ill or disabled family members are coping better than many of us!

How Can that Be?

Caregiving is Challenging and Sometimes Debilitating: The AARP, National Alliance for Caregiving and other research agencies have long measured the increasing rates of stress-related illnesses, isolation, depression, and many other impacts caregiving has on an individual. Layering on the COVID-19 pandemic brings more challenges to this already burdened group, of which I am personally a member.

The Surprise: Comparing Zarit Caregiver Burden Scores of a sample group Pre-COVID (2019) to 2020 pandemic results the "Severe Burden" score dropped by 50%.

As co-founder of Sagacity.Care, a digital health platform to facilitate caregiver navigation and care coordination, I have access to aggregate data collected from caregivers who completed our online Zarit Burden Interview (ZBI) Score Assessment. The ZBI is a well-known, valid measurement tool. Our team reviewed the results collected from 170 caregivers, pictured below, showing the shifts in scores.

This is not to say caregivers aren't overwhelmed, stressed, isolated, struggling, etc...because they are. What this is suggesting is that contrary to what you might otherwise think caregivers may be coping because of a resilience they have from what they do.

Digging Deeper to Understand

Not relying solely on numbers, we polled caregivers in the Nourish for Caregivers Community, representing programs in 70+ churches across the country and an online group of nearly 5,000 members. Here is what we heard:

In general it makes many things easier for me as a caregiver. My work meetings are all now remote, which means less days that I need to find someone to come stay with my loved one. I've found remote support groups that I never considered in the past. While the world has closed in for many, I am blessed because it has opened up for me in new ways. Angie C.

We also heard:

• "I can handle this better. We've been isolated and homebound for a long time. This is not new to me. Because of COVID we have better home delivery services. Now we don't have to drag my husband with dementia out to see a doctor. We can use video doctor appointments which are much easier." Kathi B.
• "My mom is 95 and I've been in "lockdown" with her since mid-2018, 2,400 miles away from my own family, caring for her. My "normal" is what many are now experiencing and I can truly empathize." Pati G.

As a remote caregiver myself for my 95 year-old father and 86 year-old mother, I can honestly say that I felt more prepared to deal with the isolation of the pandemic because I've been dealing with it for a long time. Caregiving teaches you to hone your arsenal of tools to survive and thrive... having to plan and think ahead, be stocked up on supplies, have medications pre-arranged for delivery and so many other things that all of a sudden was thrust on the world with COVID.

Caregivers Are Resilient. They Play an Important Role. They Need Support.

Putting my clinician's hat on, I know that there is truth in the statistics saying,

"90% of health care today is being provided in the home by caregivers"

Care has shifted to the home. Child care. Sick care. Aging care. With COVID, we've all become caregivers in some shape or form. Employers see their workforce now also becoming a 'careforce'.

The home has become a field hospital, a 'front line' that does not get the attention it deserves. Caregivers have a big role in caring for the health and needs of our aging population, our chronically ill, our veterans and disabled in this country.

How do we tap into this army of unpaid health care 'providers', support them and reward them for what they do?

The answer to this question is truly another, much longer article! (stay tuned :-)

However, in short, I can speak from my professional nursing experience, a family caregiver for over 30 years and a passionate solutions seeker to improving the health and well-being of caregivers and say that in this very moment we should not blink. We have an incredible opportunity to solve multiple issues by taking one step forward to build bridges between the caregiver and their 'patient' to the larger care team/healthcare ecosystem.

When a caregiver is supported, enabled to navigate the care system, gain access to vital communications and information, and to be folded into the care planning process, the 'patient' ultimately gets better care. Now, isn't that what we're all after?

Deb Kelsey-Davis, RN, MHSA is the Co-founder of Sagacity.Care and President/Co-Founder of Nourish for Caregivers. She is a caregiver to her aging parents, one of the most rewarding and challenging roles of her lifetime.