Caregiving: More than just ‘doing what is right’

Millions of Americans are caregivers, helping to manage and administer medications, assist people with daily tasks, help with finances and advocate for patients. Caregivers offer their time and emotional labor, often without pay — and to the detriment of their own health. 

A new Blue Cross Blue Shield, The Health of America Report^®: The impact of caregiving on physical and mental health looks at the health impacts associated with caregiving, including stress, isolation and loneliness, as well as the overall higher rates of serious health conditions experienced by caregivers. To explore issues around the health and well-being of caregivers, BCBS ProgressHealth recently sat down with Alexandra Drane, co-founder and CEO of ARCHANGELS — a national movement to support caregivers and  reframe how society sees them. Here are some highlights from our conversation:  

While caregiving seems to be a huge component of the health care system, the role is often overlooked, and caregivers themselves feel invisible. Why is that?

It’s a beautiful thing that many caregivers don’t feel they are doing anything special; they are simply “doing what is right.” To them, they are “just a son” or “just helping a neighbor.” And that’s true, and they are—but they’re also performing a real job with real value. Five years ago, the value of unpaid caregiver labor in the U.S. was estimated at more than $470 billion a year, so imagine the value today.  

There’s another component as well. When someone has a new baby, friends and colleagues delight in asking how things are going and swapping stories, because it’s a time filled with hope and joy. But if I opened a meeting with “Sorry, I’m a little out of it today, my uncle who lives with us has Alzheimer’s and wandered out of the house,” that would more likely be met with silence.

There’s been a shame associated with talking about caregiving, a reluctance to acknowledge the reality of the “job.” We need to be sharing these stories so we can help caregivers realize they are not alone, that what they are doing matters, and that their role is valued. 

What are some of the consequences caregivers face?

While caregiving is one of the most important jobs many of us will ever do, it’s also one of the hardest. And it has very real consequences.  

Caregiving is a job, even if we don’t recognize it as one, and it’s hard to physically and emotionally be at two jobs at once. Take me, for example. I work all day, so if I’m also responsible for caring for a loved one with a serious illness, that’s not going to work. I'm going to have to quit my job or take leave. I don't think we're talking about that enough. The lost hours mean lost income, negatively impacting financial security and career development, as well as contributing to stress. Given that one in four caregivers are Millennials, and one in five are Gen Z, that becomes an economic development crisis—we’re impacting a workforce in its prime years. 

There’s another consequence—our mental health. We were part of a study published by the Centers for Disease Control and Prevention (CDC) showing that 56 percent of caregivers are suffering with anxiety or depression. Thirty-six percent have increased use of substances, and one in three experienced suicidal ideation in the month leading up to the survey. 

Additionally, the COVID-19 pandemic has shown the importance of this invisible workforce. As lockdowns and stay-at-home orders hit, many caregivers found it nearly impossible to care for their loved ones properly.    

How can caregivers be better supported?

There are actually many resources out there to help caregivers. The challenge is most don’t know about them or they are in the form of employee assistance programs (EAP) that aren’t being utilized in the way they could be. For example, most EAPs offer mental health or legal services that could be of great value to a caregiver, but a harried employee struggling to keep it all together is going to have a hard time finding them, or they might worry they’ll face a caregiver stigma. 

There are some opportunities to change this. For example, make talking about caregiving as natural as talking about the joys and tribulations of a new baby. Get leaders to share their own stories. Repurpose resources that already exist in a way caregivers can understand what they do and how they can help.  Use the ARCHANGELS Caregiver Intensity Index to measure the intensity of caregiving and validate caregiver reality. Ask how it’s going, listen for places to help—and don’t ask, “How can I help?” Just help. Even just saying, “Wow. That sounds like a lot, you’re doing a good thing,” can make a huge difference. Just knowing there’s someone there to support you can reduce the risk of depression by 40 percent and anxiety by 30 percent.