Nov 14 2011
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Raise our Voices to Care for the Caregiver

By Lynn Feinberg, MSW, Senior Strategic Policy Adviser, AARP Public Policy Institute

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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.

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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.

In addition to carrying out personal tasks of daily living—such as bathing or dressing, assisting with transportation needs to medical appointments, or handling bills and insurance claims—family members are now being asked to take on a health management role in the home with little preparation or training. What many family caregivers know from firsthand experience—is that in today’s fragmented and complex health care world, the real “medical or health home” is, in reality, the home of the person with chronic care needs.

Ironically, the shift in public policy toward more home- and community-based services and away from nursing home care—which is what most individuals with chronic conditions and disabilities want—also contributes to a greater reliance on family and friends as both coordinators and providers of care. And most of these family members are also working Americans, trying to hold down a paying job in addition to their caregiving responsibilities. A body of research shows clearly that family caregiving comes at considerable emotional, physical and financial costs to the caregivers themselves. Families cannot go it alone.

So the question is this: how long can we “kick the can down the road” and place greater and greater burdens on already strained American families without better and more meaningful supports for family caregivers?

If we want the health care and LTSS systems to be better, as I did for my dad, we must demand better and more coordinated care. We must raise our voices together. We must advocate for better quality of care and quality of life. That also means advocacy and policy solutions to better recognize, support and sustain caregiving families. Why do I advocate? I do so in memory of my dad, who taught me what caring is all about.

Tags: Health & Health Care Policy, Caregiving, Voices from the Field