Supporting the Care Partner Community During National Family Caregivers Month and Beyond

November is National Family Caregivers Month (NFCM), a month dedicated to elevating the important role care partners play in supporting family members and friends living with a serious health condition. At Genmab, NFCM affords us an opportunity to reaffirm our commitment and appreciation for care partners and the critical role they play – especially when caring for someone with cancer, a key community we serve.

In the U.S., nearly 40% of people will be diagnosed with some kind of cancer in their lifetime.[1] These people often rely on support and guidance from friends, family and coworkers to get them through the journey. We’re inspired by these care partners – they’re the reason we get up in the morning and continue to advance our research and deepen education around oncology care navigation. By celebrating them, we hope to raise awareness of the breadth of support they provide so others can fully appreciate the time and weight of their role – especially when caring for someone living with later stages of disease.

While some cancer patients hire formal care partners, most have informal care partners – a spouse, an adult child, a sibling, a friend. In fact, according to a survey, approximately 2.8 million individuals in the U.S. were providing care for an adult family member or friend with cancer over the previous 12 months.[2] At Genmab, we believe care partners are the unsung heroes in cancer care – they’re not paid for what they do, and they’re usually not trained to provide this care, yet they often become the lifeline for a person with cancer.[3]

Quite simply, they do what they do out of love. Care partners ensure that even the most mundane daily needs of those in their care are being met despite the significant responsibility and impact it often has on their lives.

Caring for a loved one is selfless work, and the responsibilities are often time-consuming and allow little room for daily responsibilities, work and family, as well as balance in one’s personal life. According to a survey, care partners in the U.S. spend an average of 32.9 hours weekly caring for their loved one.2

“Being a care partner has a significant impact on your family in terms of juggling work and life activities. As my wife spent time traveling to visit my mother-in-law during her cancer treatments, I remained home researching options and navigating the care system while balancing day-to-day activities. Being fully employed and having two kids, balancing work and family responsibilities, as well as providing emotional support – it’s a lot,” said Christopher Leggett , Head of Global Commercial Innovation at Genmab, on his experience as a care partner for his mother-in-law, who was diagnosed with Merkel cell carcinoma in 2019.

In addition to the day-to-day impact, most care partners are thrust into this role with no relevant experience or preparation. And finding reliable sources of information can be difficult, time consuming or met with communication barriers between the care partner and patient care teams. Most care partners also identify themselves as joint decision makers and often feel like they lack information and knowledge to make important decisions, such as determining where to get treatment or the best way to make a treatment plan.?

Chris shared, “Many people don’t realize that even if you’re a blood relative, next of kin or an in-law, access to patient care teams and having important conversations as the primary care partner doesn’t happen as often or as smoothly as they would like. It’s really challenging to get people to call you back. You spend hours chasing people down, looking through patient portals and trying to make sense of the sheer amount of information.”

The challenges care partners face in getting and relaying information to their loved ones and making difficult decisions can be mentally taxing. It takes a toll on them and can result in stress, anxiety and emotional exhaustion. As they navigate the demands of providing care and support for their loved ones, they also often have to have tough conversations.

“My mother-in-law failed on several treatments including a clinical trial, yet we respected her wishes to continue looking for additional options in her quest for more time. As a care partner, the hard part is when you understand the prognosis and you can get a sense from the physician that it’s only a matter of time. You’re often caught in the middle of communicating that message to your loved one,” said Chris.?

A cancer diagnosis and course of disease can be devastating for patients and their families. While NFCM is a chance for us to show support for care partners and the important role they play, it’s also a time for us to dig deeper and raise much-needed awareness of the barriers they face in doing so.

At Genmab, we’re committed to deepening the understanding of the incredibly important role care partners play and aim to shine a light on the issues, educate communities and increase support for their work. Follow along on Genmab’s X and LinkedIn channels for more information on the impact of caregiving.

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For more information and resources for care partners, please visit:

·??????? American Cancer Society

·??????? CancerCare

·??????? Cancer.net

·??????? Caregiver Action Network

·??????? Family Caregiver Alliance

·??????? National Alliance for Caregiving

#NFCMonth #CaregivingHappens

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[1] Cancer Statistics. National Cancer Institute. https://www.cancer.gov/about-cancer/understanding/statistics

[2] Cancer Caregiving in the U.S. Caregiving.org. https://www.caregiving.org/wp-content/uploads/2020/05/CancerCaregivingReport_FINAL_June-17-2016.pdf

[3] Research on Cancer Caregivers and Decision-Making. CancerCare. https://www.cancercare.org/cancer-caregivers