Caregiving During The Pandemic Takes A Toll On Mental Health : Short Wave Caregivers in the "Sandwich Generation" have reported a steep decline in mental health, as did others who had to juggle changes in the amount of caregiving they had to provide to loved ones. Caregivers have struggled with anxiety, depression and PTSD at rates much higher than those without caregiving roles. NPR correspondent Rhitu Chatterjee talks about the study and her reporting with Emily Kwong.

If you or anyone you know is struggling, help is available. Call the National Suicide Prevention Lifeline at 1-800-273-8255. You can also check out this previous episode, 'How To Reach Out When Someone You Know May Be At Risk Of Suicide.'

Caregiving During The Pandemic Takes A Toll On Mental Health

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EMILY KWONG, HOST:

Just a heads-up - we do talk about suicidal thoughts in this episode about mental health. Thanks.

MADDIE SOFIA, HOST:

You're listening to SHORT WAVE from NPR.

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KWONG: Since it began, one thing is certain. The pandemic has taken a toll on people's mental health. And Rhitu, you want to talk about a group that has been hit especially hard by this, and that's caregivers.

RHITU CHATTERJEE, BYLINE: Yes. We're talking about unpaid caregivers, specifically parents of little ones. We've seen or read stories of how they've struggled during the pandemic. And there's another group of caregivers we've perhaps heard a little less about, those taking care of adult loved ones, people like Amy Adams (ph) of Seneca, Ill.

AMY ADAMS: In December, my mom had a heart attack while I was out in Colorado on vacation. She ended up having to have cardiac bypass surgery.

CHATTERJEE: And over the next several months, Amy's mother battled one complication after another, going in and out of hospitals and nursing homes. And Amy, as her mother's primary advocate and caregiver, developed severe anxiety.

KWONG: Yeah. So caregivers like Amy, they're the subject of a recent CDC study. Rhitu, what did that study find?

CHATTERJEE: Yeah. So this recent report found that about 40% of U.S. adults surveyed identified themselves as unpaid caregivers, so people taking care of kids younger than 18 and/or adult loved ones. And two-thirds of that group said they were struggling with adverse mental health symptoms like anxiety, depression, PTSD in the month before the survey.

KWONG: That's a big number.

CHATTERJEE: And it's much higher than those without caregiving roles.

KWONG: So today on the show, we talk about caregiving, how the pandemic has made that crucial role more difficult and this new data, which shows how this past year has affected caregivers' mental health.

CHATTERJEE: And we'll also explore what the health care system can do to help them.

KWONG: I'm Emily Kwong.

CHATTERJEE: And I'm Rhitu Chatterjee. You're listening to SHORT WAVE from NPR.

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KWONG: OK. So Rhitu, we heard from Amy Adams at the beginning.

CHATTERJEE: Mmm hmm.

KWONG: Tell me a little bit more about what these past few months have been like for her and for her mom.

CHATTERJEE: Yeah. So remember her mother had a heart attack in December, when Amy was away on vacation. Soon as she found out, she hopped on a plane, flew back home to be with her mom. But...

ADAMS: I was not allowed to go into the hospital to, you know, check on her, to see how she was doing. So she ended up in three hospitals before she ended up where she had her surgery with no family support whatsoever. And she was too ill to even talk on the phone with me.

KWONG: Wow. That sounds really hard. And was this all because of how things were at the height of the pandemic - because, you know, hospitals were limiting visitations?

CHATTERJEE: Exactly. And Amy, who's a psychiatric nurse, tried to stay on top of her mother's condition...

KWONG: Yeah.

CHATTERJEE: ...Her treatments by phone, virtually. But because she wasn't seeing her mother's medical team face to face, she says it was really hard for her to get even basic information like, say, her mother's lab works. And so by the time she was discharged two months later, Amy said she felt very out of the loop and unprepared to care for her mother.

KWONG: That sounds like a really stressful situation. And it became even more stressful once her mom came home.

CHATTERJEE: Yeah. And, you know, I'll admit that having had to take care of a sick parent during multiple health crises in pre-pandemic times, the work is very rewarding, but also incredibly stressful just under normal circumstances. So throw in the pandemic, and things became even harder. So it's no surprise that Amy's mental health took a toll.

ADAMS: For a good month or so, I was just, like, not sleeping, terribly anxious, very irritable, overwhelmed.

CHATTERJEE: And Amy is not alone among caregivers in feeling this way. I spoke with one of the authors of the recent study, Mark Czeisler. He's a researcher at Brigham and Women's Hospital in Boston. And Mark said that unpaid caregivers in his study reported a range of adverse mental health symptoms.

MARK CZEISLER: Those would be symptoms of anxiety or depression, symptoms of COVID-19 trauma and stress-related disorders and suicidal ideation, either wishing that they had gone to bed and didn't wake up or having seriously considered trying to kill themselves.

KWONG: Wow. And, Rhitu, suicide is something you and I have talked about on this show before.

CHATTERJEE: Yeah.

KWONG: Suicidal thoughts can really span a range.

CHATTERJEE: Yeah. So, you know, Mark mentioned people having thoughts of going to bed and not waking up. Those are sort of passive suicidal thoughts. And Mark said 40% of the unpaid caregivers in their study reported experiencing those passive thoughts, and 30% had more serious suicidal thoughts - so actively considering ending their lives. And of course, there was some overlap between the two groups because some people had both passive and more serious, active thoughts.

KWONG: Just to pause a bit here, we did an episode about how to support those struggling with suicidal thoughts, Rhitu and I. And we've shared it in our episode notes. So if you or anyone you know is struggling, help is available. You can call the National Suicide Prevention Lifeline at 1-800-273-8255.

CHATTERJEE: I'm so glad you brought that up, Emily. And people can also text, home - H-O-M-E - to 741741.

KWONG: OK. So Rhitu, are there any additional findings from this CDC study that we should highlight?

CHATTERJEE: Yeah. So Mark Czeisler told me that his study also found that one group of unpaid caregivers struggle the most during the pandemic, and that's the sandwich generation - so parents of kids younger than 18 who are also taking care of adult loved ones.

CZEISLER: In that group, the prevalence of adverse mental health symptoms went up to 85%. And that group also had five times the odds of experiencing these symptoms compared to people without these responsibilities.

KWONG: Eighty-five percent of this group.

CHATTERJEE: Yeah, and we're talking about people taking care of two generations of loved ones during tremendously trying circumstances, right?

KWONG: Right.

CHATTERJEE: And most of these people also have their day jobs. So they're juggling their job responsibilities with these high-stress caregiving roles. And so I talked to one person in this Sandwich Generation, Dr. Nicole Christian-Brathwaite, who's a child and adolescent psychiatrist based in Boston.

KWONG: Oh, yeah. We had Nicole on the podcast before to talk about the mental health crisis among children during the pandemic.

CHATTERJEE: That's right. At home, she's a mother of two boys, 4 and 6 years old, and she's a caregiver for her elderly mother and father-in-law.

NICOLE CHRISTIAN-BRATHWAITE: My mother has survived breast cancer and lung cancer and is immunosuppressed for autoimmune disease. And my father-in-law suffers from pretty significant dementia. And so they're both very vulnerable.

CHATTERJEE: And Nicole said that before the pandemic, her mother had doctor's appointments, physical therapy, social visits, and her father-in-law had access to a lot of in-person support and services.

CHRISTIAN-BRATHWAITE: My father-in-law would go to a day program for seniors with cognitive decline or cognitive issues. And so at the very least, two or three times a week, he was out of the house and socializing and getting fresh air. And that was helpful for him but certainly also helpful for us just to ease the burden a little bit of taking care of him because he really requires 24/7 support and care.

CHATTERJEE: And all of that support and care went away when the pandemic started because, you know, doctors' offices were trying to reduce COVID risk, and either they shut down altogether...

KWONG: Right.

CHATTERJEE: ...Or switched things to virtual where they could. And her mom, also because she was high risk, canceled her social visits, like most of us did at the time. And all of that care fell on Nicole, her husband and her sister-in-law, who lives close by, who also helped out.

KWONG: And then she's got her kids to take care of during the pandemic, too.

CHATTERJEE: Right. And Nicole and her husband were working from home, trying to take care of everybody, and she says it was all exhausting. You know, her sons were struggling emotionally. They developed some behavioral issues like a lot of kids. Her father-in-law became confused, disoriented or aggressive. And her mom had severe chronic pain and even ended up in the hospital.

CHRISTIAN-BRATHWAITE: I definitely feel like many days I was walking around on edge waiting for something to happen because our entire setup was so very fragile and vulnerable.

CHATTERJEE: And she said that she ended up struggling with insomnia, irritability and just feeling completely overwhelmed for a period of time. Things are better now, but the past year has been really hard.

KWONG: So, Rhitu, it sounds like one of the reasons for this spike in adverse mental health symptoms is that social services and programs to support kids and older people have really diminished during the pandemic.

CHATTERJEE: Yeah, and I know from reporting on kids' mental health that the loss of services added a lot of stress on families. And I spoke with psychologist Dolores Gallagher Thompson at Stanford, who has worked with and researched caregivers, and she confirmed that this loss of services was a huge problem for caregivers of adults as well.

DOLORES GALLAGHER THOMPSON: You know, it was very hard to find home health care workers that were willing to come into the home, like, to give physical therapy or occupational therapy or to give the caregiver a respite period - very hard to find such individuals. And even if you could find them, many families were reluctant to bring them in.

KWONG: Yeah. Well, now that more businesses and medical offices and just these indoor spaces are open here in the U.S., have those supports and services returned for families? And do we know whether unpaid caregivers are feeling emotionally better right now?

CHATTERJEE: Yeah, so to answer your first question, yes, many in-person supports and services have come back in recent months.

KWONG: Good.

CHATTERJEE: And a majority of the most vulnerable elderly population is now vaccinated - same with health care workers. So families like Nicole's also feel more comfortable accessing those services. Hospitals, too, have updated their visitation policies to allow limited visitation. When I spoke to Amy Adams, she had found a nursing home for her mother that would allow her to visit regularly.

KWONG: OK.

CHATTERJEE: That said, the last survey captured in the CDC study was from early spring this year, so that means many unpaid caregivers might still be struggling.

KWONG: Right. We don't know the latest about how they're doing. OK, so, Rhitu, does the study talk about how health care systems can somehow address this problem?

CHATTERJEE: The report says there's an urgent need to have public health efforts to support this population.

KWONG: OK.

CHATTERJEE: Caregivers need access to mental health care. And Stanford's Gallagher Thompson says that unpaid caregivers often fall through the cracks, as in the health care system just isn't checking in on them. She says every time a doctor or nurse sees a patient, it's an opportunity to also check in on that patient's caregiver.

GALLAGHER THOMPSON: So the identified patient, when that person goes for their clinic visits, they go for their tests, you know, they go for their treatments - that's the time to identify who is the caregiver and to do these quick screenings and assessments.

KWONG: Right, because I imagine that if the caregiver isn't doing well, that could also affect the person they're caring for.

CHATTERJEE: Yeah. And we know that mental health treatment can make a big difference, and so can support in terms of social services to alleviate some of that stress. And as the CDC study also showed - that unpaid caregivers who felt they had the support had a much lower risk of having mental health symptoms.

KWONG: Well, NPR health correspondent, Rhitu Chatterjee, thank you so much for shedding light on this population, what they've been through and what kind of support they need, you know, heading into the future.

CHATTERJEE: Thank you, Emily.

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KWONG: Before we go, just a reminder - the phone number for the National Suicide Prevention Lifeline is 1-800-273-8255. Reach out if you need support.

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KWONG: This episode was produced by Brit Hanson and Thomas Lu, fact-checked by Indi Khera and edited by Viet Le and Gisele Grayson. The audio engineer for this episode was James Willets. I'm Emily Kwong. Thanks for listening to SHORT WAVE, the daily science podcast from NPR.

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