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Who Cares for the Caregivers?

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Anyone who has ever flown will remember the safety demonstration flight attendants give in the case of a sudden drop in air pressure. The flight attendant sternly warns that it’s imperative to put on your oxygen mask before helping the child or disabled person sitting next to you. It’s a useful reminder that before taking care of others you must take care of yourself (in this case, because you would pass out from lack of oxygen and be of no help to anyone at all!). And yet, somehowa this message gets lost for the millions of Americans called to take care of a loved one for days, weeks, months or even years. Who takes care of them?

November marks “National Family Caregivers Month,” to recognize family caregivers in the U.S.—over 43 million at last count[1], providing unpaid care to others. They care for partners battling cancer, children dealing with depression, ailing parents suffering the debilitating effects of Alzheimer’s, and hundreds of other unique situations. Those who become caregivers almost overnight can feel lost, facing new responsibilities and having to care for what are often unrecognized wounds. Many face a lifetime of care, such as parents of mental health patients—many of whom are in their teens or early 20’s, or returning military personnel who too are typically under 35 with young families.

Family caregivers prioritize the well-being for those they care for, frequently ahead of their own well-being, which can lead to the neglect of their own health. Caregivers:

· Report lower levels of satisfaction with their family and marital relationships;
· Face higher rates of depressive symptoms, stress, and anxiety than non-caregivers;
· Have lower self-ratings of physical health and impaired health behaviors[2];
· Are impacted financially, spending 37 billion hours on family caregiving each year (estimated to be worth $470 billion in unpaid wages[3]), with over half working full time while caring for others.[4]

Caregivers often navigate these challenges on their own, and many don’t self-identify as a provider of care at all. Too few are aware that interventions are available to them that have been shown to significantly improve their quality of life, and in turn, the lives of those they care for. Interventions that can consist of support groups, skills training, and education. All this, while evidence has shown time and again that to maximize impact, interventions must occur early, integrate care, provide coverage, and be outcome-based.

At Johnson & Johnson, we are currently working with partners to deliver programs and services that increase access to resources, reduce caregiver burden, and improve family well-being. Building comprehensive interventions at the community level can help family caregivers better cope with the challenges of caregiving and have a beneficial impact on the mental health of all – both caregivers and their loved ones.

One such partnership is with Operation Family Caregiver, a program of the Rosalynn Carter Institute for Caregiving, which relies on proven, personalized methods to support and coach families of returning military service members as they navigate new challenges. Operation Family Caregiver is one of the very few family caregiver programs providing services specifically to military families. The program is currently offered at 12 physical locations across the United States with expansion plans underway. Together we are working on highlighting evidence-based caregiving practices and raising public consciousness on the unique needs of military caregivers.

Another example is our partnership with mhNOW—a multi-sectoral initiative across U.S. cities to bring mental health professionals, private companies, and others to the table to identify and scale up proven and innovative approaches to accelerate solutions for mental health over the coming years. In New York City, ThriveNYC-- a supporting partner of mhNOW, is launching a mental health plan to train 250,000 people in mental health first aid, and giving caregivers and the general population the tools to empower themselves and better assist friends and family members. This demonstrates the power of collaboration in connecting existing services and programs to deliver a more impactful approach within targeted geographies.

Caregiving is incredibly stressful, impacting health, work, family finances, and personal relationships. To be strong to take care of a loved one, you must yourself be strong. As a company that has a commitment to improving the lives of individuals and strengthen the capacity of communities, we are issuing a call to action to catalyze new partnerships and create greater public awareness around the critical role played by family caregivers. We want to bring their stories of strength and hope out of the shadows, and elevate the role of caregivers as a national public health priority.

Together, we can marshal the expertise and resources and help scale investment in evidence-based, family-whole programs that support caregivers and improve the health and well-being of both caregivers and those they care for. So the next time someone asks, “And who cares for the caregiver?” we can collectively answer: “We do.”

For Caregiver support and other resources please visit

[1] National Alliance for Caregiving and AARAP, 2015.

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