More than two-thirds (69%) of unpaid caregivers of people living with cancer in the United States say the pandemic has worsened their emotional and mental health, and a similar percentage (66%) say the pandemic has made caregiving harder overall. These are the findings of a new analysis of more than 100 U.S. cancer caregivers surveyed in the Carer Well-Being Index conducted by Embracing Carers®, an initiative led by EMD Serono, the healthcare business of Merck KGaA, Darmstadt, Germany in the U.S. and Canada, in partnership with nine global caregiving organizations.
While the challenges faced by parents caring for young children through stay-at-home advisories were spotlighted throughout the pandemic, the increasing pressures of caring for a sick loved one, particularly one with cancer, have received much less attention. In fact, although 76% of cancer caregivers say the pandemic has brought greater awareness and understanding of the struggle of unpaid caregiving, 90% still believe the important role of caregiving is not widely recognized by society.
“Family caregivers are not only a crucial part of the U.S. healthcare system, but the backbone of our society, yet they continue to be under-recognized and under-supported, hampering their ability to care for their loved one as well as maintain their own health and well-being,” said Chris Round, President of EMD Serono. “The EMD Serono Embracing Carers® Carer Well-Being Index is one tool to help bring much-needed attention to the role and needs of the caregiver during the pandemic and beyond. We remain steadfast in our commitment to working with the public and private sectors to shape new programs and resources to address the issues raised in this survey.”
Increased Responsibilities, Decreased Well-Being
Almost half (48%) of cancer caregivers surveyed say the people they are caring for rely on them more than ever before, and almost all (94%) say they put the needs of the person they care for above their own during the pandemic. Given these findings, it is perhaps not surprising that more than two-thirds (69%) of cancer caregivers say the pandemic has worsened their emotional and mental health. In fact, more than one-third (38%) report feeling like they do not have anyone to turn to for support, while another third (32%) feel like nothing they ever do as a caregiver is enough. At the same time, a wide majority (83%) say they are being relied on for emotional support by the person they care for.
These stressors are having a profoundly negative impact on cancer caregivers’ relationships:
- One in 5 (21%) say it negatively impacts their relationship with the person they care for.
- More than a quarter (28%) say it negatively impacts their relationships with family members other than their spouse/partner.
- More than a third (34%) say it negatively impacts their relationship with their spouse/partner.
- Almost half (46%) say caregiving negatively impacts their relationships with friends.
Despite all this, the overwhelming majority of cancer caregivers (94%) say caring for their loved one during the pandemic is hard but rewarding.
“Even in non-pandemic times, the pressures of caregiving can be far-reaching and negatively impact the financial, physical and emotional well-being of the entire family, and these data underscore how the pandemic has only increased these pressures, particularly for cancer caregivers,” said Lisa Winstel, Chief Operating Officer of Caregiver Action Network and a member of the Embracing Carers® advisory board. “As we start to round the corner with COVID-19, it’s critical that we don’t lose sight of the fact that for many caregivers, the responsibilities and accompanying stress will not abate.”
Survey Highlights Support Needs
General support and financial challenges are among the biggest that cancer caregivers faced during the pandemic (49% and 36% respectively).
- One-third (32%) say they have had less opportunity to access support systems (e.g., family and friends) and services (e.g., activities, group sessions).
- One in 5 (20%) cite lack of support from family and friends due to COVID-19 exposure concerns.
- Another 1 in 5 say they are challenged by not being able to afford everything they need to be a caregiver (21%) or having difficulty juggling their paid job/career and caregiving (19%).
Cancer caregivers also highlight a range of support they feel would be important to ensuring they are able to properly care for their loved one, including:
- Help navigating the health and social services/care systems to ensure they are getting all the benefits they are entitled to (87%)
- Caregiver-friendly workplaces that understand and respond to their needs (83%)
- Ways to connect with other caregivers (e.g., social media, forums) (75%)
The mental health consequences of caregiving are apparent throughout the survey findings, as is the need for more support to cope with the emotional stress, with nearly all (94%) cancer caregivers agreeing more mental/wellness resources need to be readily available.
For research, resources and more information for caregivers, please visit embracingcarers.com.
The IPSOS-led survey was conducted via online and phone methodologies in September and October 2020, with over 9,000 unpaid carers across 12 countries, including the United States and Canada. Unpaid carers were defined as those who care for someone with a long-term illness (e.g., cancer), physical disability (e.g., spinal cord injury), or cognitive mental condition (e.g., Alzheimer’s). The base sample size for cancer caregivers was n=1,035, including 109 cancer carers from the US and 102 from Canada. Statistically significant differences between cancer carers and all other carers were evaluated using the Chi-square test with p ≤ 0.05.
To download the US Carer Well-Being Index report, please click here.
About Embracing Carers®
Embracing Carers® is a global initiative led by Merck KGaA, Darmstadt, Germany, operating as EMD Serono, EMD Millipore, and EMD Performance Materials in the United States and Canada. It is a collaboration with leading caregiver organizations around the world designed to increase awareness, discussion, and action about the often-overlooked needs of caregivers. Given that caregivers need support and often do not know where to turn for help, Embracing Carers® was created to fill that void.
Commitment to Cancer
Merck KGaA, Darmstadt, Germany, is a science-led organization dedicated to delivering transformative medicines with the goal of making a meaningful difference in the lives of people affected by cancer. Our oncology research efforts aim to leverage our synergistic portfolio in oncogenic pathways, immuno-oncology, and DNA Damage Response (DDR) to tackle challenging tumor types in gastrointestinal, genitourinary, and thoracic cancers. Our curiosity drives our pursuit of treatments for even the most complex cancers, as we work to illuminate a path to scientific breakthroughs that transform patient outcomes. Learn more at www.emdseronooncology.com. Follow us on Twitter: @EMDOncologyUS and LinkedIn: EMD Serono, Inc.
About EMD Serono, Inc.
EMD Serono—the healthcare business of Merck KGaA, Darmstadt, Germany in the U.S. and Canada—is engaged in the discovery, research and development of medicines for patients with difficult to treat diseases. The business is committed to transforming lives by developing and delivering meaningful solutions that help address the therapeutic and support needs of individual patients. Building on a proven legacy and deep expertise in neurology, fertility and endocrinology, EMD Serono is developing potential new oncology and immuno-oncology medicines while continuing to explore potential therapeutic options for MS and other immunologic diseases. Today, the business has approximately 1,500 employees around the country with commercial, clinical and research operations based in the company’s home state of Massachusetts. Follow us on Twitter: @EMDSerono, LinkedIn: EMD Serono, Inc. and Facebook: EMD Serono.