Caregiver Stories: The Carer Well-being Index

By: Emma Burick & EMD Serono

Caregivers haven’t been alone in experiencing the pressures of the COVID-19 pandemic but many faced pressures, demands and work-personal life challenges that others may not understand. Especially for those who are taking care of loved ones with cancer, Multiple Sclerosis (MS), Alzheimer’s or other long-term illnesses, physical disabilities or cognitive/mental conditions, we know that the pandemic has affected their economic, physical and mental well-being. They’ve struggled with emotional isolation and often sacrifice their own health and well-being for the sake of people they love. At First Descents (FD), we’re committed to raising awareness of these challenges caregivers face and support them in addressing these unmet needs.

In 2020, FD launched a new collaboration with EMD Serono, Inc. and the Embracing CarersTM initiative. This global initiative, in collaboration with leading organizations around the world, is working to increase awareness, discussion and action about the often-overlooked needs of caregivers. With EMD Serono’s support, FD will expand its caregiver programming in 2021 and provide the FD experience to caregivers for people living with MS for the first time, as well as support existing programs for those impacted by cancer and other serious health conditions. This collaboration makes this organizational milestone possible and we are thrilled to extend the healing power of adventure to more caregivers within our community.

Together, FD and EMD Serono have been elevating the experiences of caregivers within the First Descents community. These powerful stories are but a few of the many realities and challenges caregivers and their loved ones have been facing before, and through, the COVID-19 pandemic.

Embracing Carers™ released the Carer Well-Being Index to determine the current and residual impacts of COVID-19 on unpaid caregivers, including its impact on their economic, physical and psychological well-being. Unpaid caregivers are often family members, neighbors, or friends who haven’t had formal caregiving training.

While caregivers weren’t alone in experiencing 2020 as a highly emotional and unstable period, they faced unique pressures, demands and time commitments often overlooked by society. They must now navigate fast-changing telehealth and technology demands, provide emotional support during a globally taxing time, and handle increased responsibilities at home—all at once.

“I feel overwhelmed having to be there for my family and my father all at the same time.” – 43-year-old Male taking care of someone with Alzheimer’s, Dementia

Amid these rising responsibilities, many caregivers sacrifice their own health and well-being for the sake of people they love. They deal with emotional isolation. Financial strife hits hard as unemployment spikes and salaries are imperiled. Many lack the time to care for their own physical and emotional health. These challenges are even more significant among women and racial/ethnic minority caregivers, who encounter inequities throughout the job market and the economy.

Add it all up, and the United States faces a deep societal problem: American caregivers are undercounted, unheard, struggling and feel all but invisible.

“See us. Hear us. Care about our stories and our pain!” – 36-year-old Female caring for someone with an ongoing cognitive condition

Now more than ever, federal and state governments, employers, community organizations and everyday Americans all have roles to play in addressing that problem. Caregivers should not have to face these hardships and inequities alone. They’re sacrificing for us, one by one. As a society, we can help them, together.

View the Results of the United States Survey here.

First Descents has published the above information with the permission of EMD Serono and the Embracing CarersTM initiative. To learn more about EMD Serono and the Embracing CarersTM  initiative, visit the website here.


About EMD Serono, Inc.

EMD Serono – the biopharmaceutical 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 diseases such as psoriasis, lupus and MS. 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. www.emdserono.com.

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