National Family Caregivers Association

Saturday Nov 7, 2009

The History of NFCA

In the beginning …

It evolved out of a friendship - two women leaning on each other for support. One was caring for a young husband with MS, the other for a parent with Parkinson's disease. Their caregiving experiences were vastly different, yet they quickly discovered that their needs were very much the same.

The National Family Caregivers Association was founded in 1993 when Suzanne Mintz and Cindy Fowler recognized the common bonds between them and decided to do something positive with their grief. "I was feeling isolated as an only child taking care of my mother and carrying a lot of weight alone," says Fowler. "The experience of sharing that was wonderful." Realizing that others must be in the same situation, Mintz and Fowler decided to make it their mission to provide emotional support to a group who, like them, may not know how to reach out. "Our original vision was to get information and resources into people's hands and to let them know they weren't alone," says Fowler.

Click here for a chronology of NFCA's accomplishments.

The Early Days

With little more than sheer determination and a few connections in the local business community, Mintz and Fowler published the first issue of Take Care! Self-Care for the Family Caregiver in the spring of 1992. It was a four-page newsletter they distributed to the social work departments of area hospitals and voluntary health agencies. Word of the newsletter spread quickly, and they soon found it was in demand. Armed with the knowledge that they had created something helpful to others, Mintz and Fowler took their idea one step further. In the spring of 1993, they formed the National Family Caregivers Association, and Take Care! became its official publication.

In her latest book, Love, Honor, & Value, Suzanne Mintz recalls those first discussions that led to the creation of NFCA. "We wondered why no one seemed to be focused on the fact that helping a loved one with a deteriorating illness had a very real impact on not only the person with the illness, but also on those of us who were primarily responsible for helping them. We were family caregivers, and we wanted someone to reach out to us, to tell us where to find helpful information and advice, emotional support, and real hands-on assistance when we needed it. NFCA was created to educate, support, empower, and speak up for America's family caregivers so that all caregiving families can have a better quality of life."

Today

NFCA's first decade was focused on raising awareness about the existence of family caregivers as both a specific cohort within our population, one that never existed before, and equally importantly on striving to help family caregivers themselves recognize their role as something more than being a good daughter, spouse, or parent and empowering them by providing education, support, and a public voice to enable them to speak up and reach out for the help they need.

Some of the major accomplishments of this period were the huge rise in public awareness about family caregiving as measured by the exponential growth in media coverage, the passage of the National Family Caregivers Support Program and the acceptance of the term family caregiver by thought leaders. Perhaps the greatest change of all has been the realization by government officials and other caregiving organizations that family caregiving is a lifespan issue, not one restricted to the aging community.

Today NFCA still maintains a large focus on public awareness, and caregiver education, and support, especially as it relates to helping family caregivers work effectively with healthcare providers, but we are expanding our focus on bringing about the changes necessary to improve the day-to-day lives of family caregivers. Toward this end we have begun publishing a series of articles entitled It Doesn't Have To Be This Hard as a way to inform and educate family caregivers about national and state policies that make it more difficult for them to care for their loved ones and keep them self and healthy, while simultaneously maintaining their own well-being, their place in the workforce and financial stability for the future. We are expanding our ability to reach an ever-wider audience of family caregivers and policy makers, to collect caregiver stories and build our Caregiver Community Action Network (CCAN) of state-based volunteers.

We hope you will support our efforts and join forces with us to make America a truly family caregiving friendly place.