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Unpaid Caregivers Were Already Struggling. It's Only Gotten Worse During The Pandemic

Jun 17, 2021
Originally published on June 17, 2021 5:58 pm

The pandemic has taken a massive toll on people's mental health. But a new report by the U.S. Centers for Disease Control and Prevention confirms what many of us are seeing and feeling in our own lives: The impact has been particularly devastating for parents and unpaid caregivers of adults.

Two-thirds of survey respondents who identified as unpaid caregivers said they experienced mental health challenges during the pandemic, such as symptoms of anxiety or depression, or suicidal thoughts.

Only one-third of people with no caregiving responsibilities reported the same symptoms.

Of the more than 10,000 survey respondents, more than 40% identified as being unpaid caregivers.

"What is striking here is just how widespread unpaid caregiving responsibilities are in the population and how much of a burden and a toll these responsibilities" are having, says Shantha Rajaratnam, a co-author of the study and a psychologist at the Turner Institute of Brain and Mental Health at Monash University in Australia.

The study also found that people who care for both children under 18 and adults — many of them part of the sandwich generation — are faring the worst, with 85% of this group experiencing adverse mental health symptoms.

"It's an extremely important study," says psychologist Dolores Gallagher-Thompson, professor emeritus at Stanford University who has researched family caregivers and their challenges.

The study is the first to document the problems caregivers have experienced during COVID-19, she notes, and underscores "the importance of paying attention to caregiver issues, caregiver mental health" and the need for education and resources to better support them.

The contrast between caregivers and others is stark

The study, part of ongoing research by The COVID-19 Outbreak Public Evaluation (COPE) Initiative, is based on surveys conducted in December 2020 and February-March 2021.

More than half of those who identified as caregivers said they had experienced symptoms of anxiety or depression, or of disorders like PTSD related to the stress and trauma of COVID-19.

A significant number of caregivers said they had contemplated suicide. Nearly 40% reported having passive suicidal thoughts, meaning "wishing that they had gone to bed and didn't wake up," says study co-author Mark Czeisler, a graduate student at Monash University and a research trainee at Brigham and Women's Hospital in Boston.

And more than 30% had seriously considered taking their own life — about five times the number of noncaregivers, the study found.

Across the board, mental health impacts have been more severe for people who care for both children and adults. Half of this group said it had seriously considered suicide in the past month.

The pandemic worsened the challenges caregivers face

Even before the pandemic, being an unpaid caregiver was stressful and associated with a higher risk of mental health issues, says Gallagher-Thompson. The COVID-19 pandemic has made things even harder.

For instance, the pandemic has taken away many formal and informal sources of support for caregivers.

That was the case for Dr. Nicole Christian-Brathwaite. She's a Boston-based child psychiatrist and lives with her husband, her mother, her husband's father and two sons, who are 4 and 6.

Before the pandemic, her father-in-law, who has dementia, went to a day program for seniors with cognitive decline. Her mother, a survivor of breast and lung cancers, went to physical therapy twice a week, doctor appointments and met with friends.

When the pandemic hit, they lost those services and social support — at the same time Christian-Brathwaite and her husband began working from home while taking care of their sons and parents.

Life at home became much more complicated. Her sons developed behavioral problems with the transitions and stresses of the pandemic. Her mother struggled with chronic pain, and was hospitalized during the pandemic. And there were days when her father-in-law was confused, disoriented or aggressive.

"Many days I was walking around on edge waiting for something to happen because our entire setup was so very fragile and vulnerable," says Christian-Brathwaite. "It's been exhausting."

And her mental health has suffered. "I certainly was dealing with insomnia," she says. "I was short tempered. I was more irritable. I didn't have the same tolerance for things."

More support needed to help caregivers cope

The new study highlights the extent to which unpaid caregivers have struggled during the pandemic, says Gallagher-Thompson.

"There are some serious issues here that shouldn't be ignored," she says.

And yet caregivers are often ignored by the health system, which is set up to focus only on patients.

"Family members are rarely asked, 'How does this affect you? What is difficult? How can we help you? How can we support you in being able to carry out your role, your tasks, your responsibilities?'" Gallagher-Thompson says.

As the new study shows, support can make a big difference — respondents who could rely on others for help with caregiving had a lower incidence of mental health symptoms.

So it's important to educate and support caregivers. For example, physicians can start by screening their patients' caregivers for mental health symptoms and provide more resources to those who need it, says Gallagher-Thompson.

Christian-Brathwaite hopes the new study will help physicians recognize that family caregivers are just as important to consider while treating patients.

"We really need to take a step back and look at the village that's around them because our patients can't be successful without having the support from family," she says.

Copyright 2021 NPR. To see more, visit https://www.npr.org.


The pandemic has taken a toll on people's mental health. A new CDC report says that toll has been much higher for unpaid caregivers, those taking care of loved ones. NPR's Rhitu Chatterjee has the story.

RHITU CHATTERJEE, BYLINE: Amy Adams lives in Seneca, Ill. Last December her mother, who lives nearby, suffered a heart attack and ended up in the hospital, needing bypass surgery. But Adams wasn't allowed to see her.

AMY ADAMS: 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.

CHATTERJEE: And not being able to visit made it hard for her to get medical information about her mother.

ADAMS: My mom - she had, like, multiple, you know, specialists, you know, seeing her. And so it's - you know, it was really hard to try to touch base with them, you know, to get, like, a picture.

CHATTERJEE: By the time Adams brought her home two months later, she felt out of the loop and unprepared as a caregiver. Her mother has been in and out of hospital since, and Adams herself has developed severe anxiety.

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

CHATTERJEE: Over 40% of people in the United States identified as unpaid caregivers in a new study. Author Mark Czeisler says two-thirds of this group said they had struggled with mental health symptoms.

MARK CZEISLER: 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.

CHATTERJEE: In comparison, only a third of people without caregiving responsibilities had these symptoms in the month before. Czeisler, a research trainee at Brigham and Women's Hospital in Boston, says the caregivers who were affected the most is the sandwich generation, those taking care of children under 18 as well as older loved ones.

CZEISLER: In that group, the prevalence of adverse mental health symptoms went up to 85%.

CHATTERJEE: And they were five times more likely to have mental health symptoms than people without these roles. Co-author Shantha Rajaratnam is a psychologist at Monash University in Australia.

SHANTHA RAJARATNAM: What is striking here is just how widespread unpaid caregiving responsibilities are in the population and how much of a burden and a toll that these responsibilities can be having.

CHATTERJEE: Psychologist Dolores Gallagher-Thompson at Stanford wasn't involved in the new study but has worked with unpaid caregivers. She says caregiving has always been stressful, but the pandemic made it even harder, partly by taking away people's usual coping mechanisms.

DOLORES GALLAGHER-THOMPSON: Exercise, going to the gym, going to church, going to the movies, going out to dinner.

CHATTERJEE: The usual in-person services and supports people relied on in pre-pandemic times disappeared as well.

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.

CHATTERJEE: And as the new study confirms, support can make a big difference. People who had help with caregiving coped better and had lower risk of mental health problems. Rhitu Chatterjee, NPR News.

(SOUNDBITE OF DIIV SONG, "UNDER THE SUN") Transcript provided by NPR, Copyright NPR.