New Data Summarizes Caregiver Burnout During COVID-19 Pandemic

New data confirm that the majority of unpaid caregivers caring for people living with cancer and other long-term conditions have experienced worsened emotional and mental health since the beginning of the pandemic, according to a new analysis of the Carer Well-Being Index Initiative.¹

The study included caregivers who care for loved ones with a variety of long-term illnesses, cognitive/mental conditions, or physically disabilities. These conditions included cancer, multiple sclerosis, Parkinson’s disease, dementia, Alzheimer’s spinal cord injury, muscular dystrophy, mental condition, and congestive heart failure. There were a total of 750 unpaid caregivers across in the US.²

Five overall themes emerged from the US survey:

• Caregivers shared that the demands placed on them had increased exceptionally. They felt that the pandemic placed more pressure on their shoulders.
• They found that their responsibilities and specific tasks had changed.
• The impact on their physical, mental, financial, and social outcomes had intensified.
• Inequities among women and racial/ethnic minorities were exacerbated.
• There is a need for solidified global support for caregivers across public and private sectors.

“It is harder for me to get the things she needs,” shared a 67-year-old woman caring for someone with cancer, in the survey. “I am afraid to go to store for groceries and medications. I do not ask for help at all because I am afraid for others to come into our home for safety reasons. I try so hard to keep her safe.”

In the United States, responses were collected between September 3 to 24 via an online survey. The confidence interval was 95% and the estimated margin of error was +/- 3.6 percentage points.

Increase in Demands

Notably, the pandemic obligated younger populations to step into the role of caregiver for the first time. Seventy-six percent of survey participants had only been a caregiver for 5 years or less at the time of data collection. Furthermore, 13% of caregivers stepped into the role during the COVID-19 pandemic. Among respondents, 18% were parents and 18% belonged to Generation Z or millennials.

Similarly, the demand on caregiver time saw an increase from 2020 to 2021. Before the COVID-19 pandemic, caregivers were spending an average of 20.6 hours a week caring for their loved one. During the pandemic, this number increased to an average of 28.1 hours per week. The addition of 7.5 weekly hours for caregiving was felt the hardest among caregivers who worked in addition to caregiving. Additionally, 30% of caregivers believed that moving forward, the amount of time they would spend caring for their loved one would become 41 hours, due to complications of the COVID-19 pandemic.

Providing emotional support was listed as a top responsibility among caregivers (77%), followed by preparing meals (70%) and transportation (68%). The need to provide emotional support was felt more significantly among female caregivers (80%) compared with male caregivers (70%). Ninety-one percent of caregivers stated that, during the COVID-19 pandemic, they put the emotional needs of their loved one before themselves.

Shifting Responsibilities

The primary change in responsibilities that emerged from the pandemic was an increased need to manage new technology. Specifically, 64% of respondents agreed that they needed to manage the technology necessary for telemedicine/virtual medical appointments, and 48% of respondents shared that they needed to manage the appropriate technology to remain in touch with loved ones. Of note, 53% of caregivers expressed a desire for additional guidance or training in the appropriate utilization of telemedicine or apps necessary to give care.

A Toll on Well-Being

Burnout has reached unprecedented levels since the initiation of the COVID-19 pandemic. According to survey results, 79% of caregivers have sacrificed a higher volume of their personal life in order to care for their loved ones. The 4 key aspects of well-being, which were impacted by the pandemic, include emotional well-being, financial well-being, social well-being, and physical well-being.

Thirty-seven percent of caregivers shared that most of their money went towards resources and supplies required to provide adequate care, such as food, household bills, and medical equipment for their loved one. Unfortunately, only 15% communicate with other caregivers, despite responses from 71% of caregivers confirming that relationships with people in similar positions helps improve emotional well-being.

Exacerbated Inequities

The survey found that women are more likely to dedicate at least 41 hours each week caring for their loved one (25% female vs 18% men). They are also likely to have more responsibilities compared with their male counterparts, such as providing emotional support (80% vs 70%, respectively) and making meals (73% vs 63%). Women caregivers are also more likely to have low income and, therefore, be susceptible to increased financial burden (56% vs 36%).

Caregivers who are part of racial minorities communities are also likely to face disproportionate struggles. Caregivers in these populations were more likely to have their salaries reduced during the pandemic compared with White caregivers (28% vs 14%, respectively). These groups also reported a higher level of concern regarding COVID-19 infections (91% vs 86%). Lastly, these groups a more urgent need for better caregiver resources and aid compared with White respondents (62% vs 50%).

The Path to Solutions

The survey queried participants abut necessary steps to help alleviate caregiver burden. The majority of cancer caregivers shared that there is an unmet range of support needed to ensure that they can properly care for their loved ones.

Necessary support included: helping caregivers navigate the health and social services/care systems to ensure they are getting all the benefits they are entitled to (87%), creating caregiver-friendly work environments and that understand and allow flexibility for caregiver needs (83%), and more ways to connect with other caregivers to help alleviate emotional burden (75%).

“Caregiving has become a lot harder,” summarized a 22-year-old woman caring for 2 individuals with ongoing chronic disorders. “So many things have changed in this world; there are certain stores that aren't open, certain places that aren't safe to bring someone whose immune system [is] compromised, and everyone's mental health has gotten worse. I have to be a shoulder to cry on, but I don't really have my own shoulder to cry on.”

References

1. New data show dramatic emotional toll of pandemic on unpaid caregivers of people living with cancer, affecting mental health and relationships. News release. Business wire. November 18, 2021. Accessed December 21, 2021. https://bwnews.pr/3phbn9R
2. The U.S. Carer Well-Being Index. Who cares for caregivers? Perspectives on COVID-19 pressures and lack of support. Embracing Carers. Accessed December 21, 2021. https://bit.ly/3Jb3WsH