A whole new type of medical care lies ahead.
The new Patient Protection and Affordable Care Act (Affordable Care Act) is complicated, to say the least. How could it not be? It's designed to change the way healthcare is provided and financed. The document is more than 2,000 pages long, and, no, I haven't read them all. But I know people who have, and they helped me gather information on the family caregiver-friendly sections. With this article, the National Family Caregivers Association (NFCA) is introducing a series of educational pieces designed to explain them.
A Bit of History
When NFCA was founded in 1993, Cindy Fowler (co-founder) and I had to explain to people who family caregivers were and what we did. I would often say, "A family caregiver is someone like Cindy and me. Cindy cares for her mom, who has Parkinson's disease, and I care for my husband, who has multiple sclerosis (MS)."
"Oh," they would respond, or, "I'm so sorry." But it was obvious most of the people we spoke with couldn't make a connection between what we were describing and an experience from their own lives.
Fast-forward to 2010. It's hard to meet someone in his/her mid-40s or older who hasn't had a caregiving experience or doesn't expect to have one.
The role of family caregivers in caring for people with chronic conditions and/or disabilities is now acknowledged as a key component in the provision of healthcare and long-term care. Healthcare professionals have a growing respect for the work of family caregivers, and research proves the negative impact the extreme stress of being a family caregiver can cause. While this respect has yet to translate into the types of significant changes most family caregivers can see in their daily lives, there definitely has been progress in the 17 years since NFCA's birth—and more is on the way.
Read more in the March 2001 issue of PN.