Insights From the National Family Caregivers Association

Suzanne Mintz, co-founder of the National Family Caregivers Association

Being a family caregiver is not a one-size-fits-all position. Reports indicate that family caregivers provide more than 80 percent of home health care services. To spend a majority of your time providing sustainable care to someone else is demanding, and requires a great deal of support.

That's the mission of the National Family Caregivers Association. Through education and advocacy, the NFCA provides a safe, nurturing place for a caregiver to go for understanding and resources.

LoveToKnow Seniors talked with Suzanne Mintz, the association's president and co-founder about the startling facts of caregiving, the NFCA's Caregiver Community Action Network, and what's on her wish list.

National Family Caregivers Association Interview

Please share some other statistics about caregiving that many might find surprising.

  • There are over 50 million family caregivers in the United States.
  • Almost one in five of us is a family caregiver, and for everyone else - they will in all likelihood either be a family caregiver in the future or will need one.
  • Today, family caregivers provide over $300 billion in "free caregiving services" to their loved ones every year.
  • Caregiving families, categorized as families in which one member has a disability, have median incomes that are more than 15 percent lower than non-caregiving families, and they spend 2.5 times more on out-of-pocket medical expenses than a non-caregiving family.

It is critical that family caregivers take care of themselves and their own health, because family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off a family caregiver's life. Many family caregivers also report having a chronic condition at more than twice the rate of non-caregivers.

How is the NFCA raising awareness and trying to change public policy?

  • Advocacy - It is important that we recognize that what happens on Capitol Hill and in state houses across the country actually affects what happens in our bedrooms and bathrooms on a daily basis. The NFCA is an active member of a number of healthcare-oriented coalitions and boards and we are working actively in concert with others to bring about changes to our healthcare system to make it more patient and family-friendly.
  • Awareness - The NFCA is the recognized organizer of National Family Caregivers Month held every November as a time every year to thank, support, and educate family caregivers. It has become part of our national culture, provides opportunities for educational programs in local communities and inspiring national, state, and local proclamations. At the 2008 event, there's a free, two-part teleclass for family caregivers called "Communicating Effectively with Healthcare Professionals".

In addition to the work of the NFCA, my new book, A Family Caregiver Speaks Up ? It Doesn't Have to be This Hard, includes a full chapter about how changes to our current healthcare system and public policies would mean that while it will always be a challenging situation, family caregiving simply doesn't have to be as hard as it is today.

Family Caregiving Resources

What is the CCAN?

The Caregiver Community Action Network is a unique and highly dedicated volunteer group of over 90 current or former family caregivers. They serve as presenters, speakers, panelists, and workshop directors. CCANers advocate on behalf of family caregivers, talk to local and regional media, and some even manage their own family caregiver web sites.

Some CCANers are also professional caregivers while others are full-time family caregivers. All CCANers reach out to family caregivers, providing education and support, and at times teaching caregivers to be advocates for themselves and their loved ones. Most importantly, CCANers bring the NFCA to family caregivers on a local level.

Please tell us a little more about the NFCA Story Project and its impact.

The NFCA Caregiver Story Project helps to put a face on family caregiving. It's an opportunity for family caregivers to share their caregiving journeys, hopes, and dreams for the future. It offers family caregivers a chance to both share their stories as well as to read about other family caregivers' experiences to let people know they are not alone. Our Story Project lets family caregivers know that there are so many others out there that are experiencing the same emotions, challenges and joys that are all part of being a family caregiver providing home health care.

The NFCA also uses the Story Project in our advocacy outreach to let public policy officials know what is happening in their states and congressional districts. It's also a way to create an awareness of family caregiving and the importance of health reform to better meet the needs of families dealing with chronic illness, because family caregiving just "doesn't have to be this hard."

I noticed that many people who submitted stories included a wish list. What's on your wish list?

The NFCA envisions an America in which family caregivers lead full and productive lives, free from depression, pain, isolation, and financial distress.

Additional Information

~Tracey L. Kelley

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Insights From the National Family Caregivers Association