Nov 14, 2011, 12:00 PM, Posted by Lynn Feinberg
By Lynn Feinberg, MSW, Senior Strategic Policy Adviser, AARP Public Policy Institute
My father was one of the smartest, most caring, and endearing persons I have ever known. An attorney by profession and a veteran of World War II, he was a loving husband, father, and grandfather, and a true friend. Everyone liked and respected my dad. And I mean everyone. He had that unique ability to connect with people of all ages. Quiet and gentle by nature, he was a listener. When he spoke, it was always with words of kindness and wisdom. Caring for my father—along with my mother, two sisters, and four home care aides—and ensuring that he lived in old age with the dignity and respect that he deserved was one of the most important, and profoundly meaningful, experiences of my life. It was also one of the hardest roles I’ve ever had. He died nearly 3 years ago at the age of 94. I miss him deeply.
As a social worker and policy researcher, I’ve been working on family care issues for about 25 years now – before family caregiving for an aging relative or friend became the “new normal” of the baby boom generation. Even with my professional knowledge in the areas of gerontology, health care, and long-term services and supports (LTSS), we couldn’t always get it right for my dad. As a family, we faced what many of the 62 million family caregivers in the U.S. experience day in and day out: our health care and LTSS systems are enormously fragmented, very expensive, and are not set up to meet the needs of family caregivers or those for whom they care.
By default, the real coordinators of care for frail elders and adults with disabilities are their family caregivers. The economic value of the unpaid care they provide is estimated at $450 billion in 2009 by the AARP Public Policy Institute, up from $375 billion in 2007. If family caregivers were no longer available—or let’s say hypothetically, went on strike for a day—the health care and LTSS systems would be overwhelmed by the increasing need for services and supports.