Caregiver Action Network: Caring for Those Who Care for Loved Ones

By John Schall, CEO, Caregiver Action Network

In 1991, two friends – one caring for her mother with Parkinson’s; one caring for her husband with MS – discovered similarities in their issues as caregivers. Realizing that others must be in the same situation, they made it their mission to provide support to others who may not know how to reach out for help and who did not even know the phrase “family caregiver.”

Since 1993, Washington, D.C.-based Caregiver Action Network (the National Family Caregivers Association) has been tirelessly working to advance resourcefulness and respect for family caregivers across the country. There is now so much more support for family caregivers than when CAN began, and much of the progress is due to the work of this organization.

Caregiver Action Network continues to be the nation’s leading family caregiver organization working to improve the quality of life and to promote resourcefulness and respect for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

Some of the major accomplishments during these many years include the huge rise in public awareness of family caregiving as measured by the enormous growth in media coverage; the passage of the National Family Caregivers Support Program; the acceptance of the term “family caregiver” by thought leaders; and the realization by government officials and others that family caregiving is a lifespan issue, not one just restricted to the aging community.

CAN exists for caregivers, and they need all the help they can get. Two out of every five adults – 39% of the U.S. population – provide care for a chronically ill, disabled or aged family member or friend during any given year and typically spend 20 hours per week providing care for their loved one, while 13% of family caregivers are providing 40 hours of care a week or more. For six in ten family caregivers, this is, of course, in addition to already working a full- or part-time job. The value of the services family caregivers provide is estimated to be $522 billion a year, twice as much as is spent on homecare and nursing home services combined.

CAN provides free educational programs that help family caregivers develop the confidence and capabilities they need to function as advocates for themselves and their loved ones, and ultimately to become effective members of their loved one’s healthcare teams. Education enables CAN to achieve its goals by creating resourceful and capable caregivers, reducing caregiver stress, and increasing respect for caregivers.

CAN programs are designed to help family caregivers be the essential members of the care team that they are, by teaching family caregivers to be effective care coordinators, and focus on key coordination activities such as planning a doctor’s visit, managing medications, preparing for an emergency room visit/ICU stay, monitoring care for a hospitalized loved one, and care-recipient transfers. Our educational resources assist in learning to develop effective coping skills for dealing with caregiving at all times and particularly at times of stress.

Connecting caregivers to one another is a crucial aim of CAN. Caregivers need to know they are not alone. CAN maintains a national peer-support volunteer corps, and provides on-demand webinars, toolkits, monthly e-letters of resources, news, how-to articles, caregiver stories and answers to pressing questions. In addition, the Family Caregiver Forum enables caregivers to connect and help each other. This online forum is a safe place where any caregiver can ask a question of others dealing with similar circumstances and expect thoughtful and helpful responses.

CAN also provides two separate websites aimed specifically at caregivers of cancer patients and caregivers of those with rare diseases. Help for Cancer Caregivers is a unique collaboration of organizations with a shared goal of improving the health and well-being of the people who care for people with cancer. Caring for Rare Disease Caregivers is a guide for family caregivers of loved ones with rare diseases. Both contain vast information tailored specifically for the unique circumstances of caregivers for their respective diseases.

In addition to a vast repository of educational materials, CAN also offers the Assisting Caregiving Employees (ACE) program to large employers. It is more costly to lose employees who are caregivers and have to hire and train new employees. The ACE Program helps major companies and organizations provide their caregiving employees with the resources they need to help with their caregiving responsibilities so that they can remain productive and healthy employees.

CAN partners with many other organizations and corporations in advocacy efforts for policies of interest to family caregivers. To increase its reach, CAN collaborates with disease advocacy associations like the COPD Foundation. CAN addresses the needs of the caregiver so that the disease advocacy organizations can focus their expertise on the disease itself.

So if you need help managing any of the many challenges that come from caregiving – such as medications, isolation, feelings of anger or depression, or communicating with doctors – feel free to check out CAN’s free resources. And if you are a patient who relies on a family member for help, do them a favor and send them to CAN’s resources because they need someone to lean on, too!

For more information, visit www.CaregiverAction.org, call (202) 454-3970, or email at info@CaregiverAction.org.