For Immediate Release:
Contact: Nancy Thompson
February 24, 2012
AARP Calls for National Attention to the Growing Challenges of Caregiving
New Report Exposes the Difficulties of Caregiving and Offers Practical Advice to Family Caregivers and Those Who Support Them
WASHINGTON, DC – Backed by the weight of 10 leading authors on caregiving, a new AARP report defines the challenges facing America’s family caregivers and calls for a reexamination of policies and strategies to strengthen and support caregiving families. “A Call to Action: What Experts Say Needs to Be Done to Meet the Challenges of Family Caregiving," is the outcome of an AARP forum of authors and experts in health and caregiving. http://www.aarp.org/relationships/caregiving/info-02-2012/Call-to-Action-What-Experts-Say-Needs-to-Be-Done-to-Meet-the-Challenges-of-Family-Caregiving-AARP-ppi-ltc.html
Specifically, the group concluded that family caregivers need better education and awareness, more financial relief, better communication and collaboration with health care professionals, heightened recognition of their contribution from healthcare providers and a variety of supports in policy initiatives.
The panel of long-time experts in health or caregiving Robert L. Kane, MD; Carol Levine; Suzanne Geffen Mintz; Peter V. Rabins, MD, MPH; Howard Gleckman, and Cheryl E. Woodson, MD, and popular writers Jane Gross, Walter Mosley, Jonathan Rauch, and Gail Sheehy, who have recently turned to this topic for personal or professional reasons also offered personal insights that reflect the struggles and wisdom born of experience of many caregiving families.
Among their insights:
* According to Walter Mosley, age is the great equalizer among races, because all older people are marginalized by society. Mosley is a well-known mystery writer and author of The Last Days of Ptolemy Grey.
* Describing the caregiving conundrum, Suzanne Mintz, author of A Family Caregiver Speaks Up: “It Doesn’t Have to Be This Hard” concluded that caregivers become care coordinators by default . . . thrust into this role without preparation, training or support. Jonathan Rauch, who writes for The Atlantic, likened it to becoming a member of an isolated army of caregivers—each operating as a force of one with little social infrastructure and cultural support, and long-time New York Times writer Jane Gross, author of A Bittersweet Season: Caring for Our Aging Parents—and Ourselves said the question she hears most often from family caregivers is “What do you mean Medicare doesn’t pay for long-term services and supports?”
* It is critical for caregivers to take breaks and get out of the house recommends Peter Rabins, co author with Nancy L. Mace of The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss. He also suggested that caregivers focus on maximizing what their loved one can do—but accept what the person can no longer do. Gail Sheehy, author of Passages in Caregiving: Turning Chaos Into Confidence, advised family caregivers to look for a doctor or nurse who can serve as their health care “quarterback.”
* Four authors, Howard Gleckman, author of Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America’s Most Urgent Health Crisis, Robert Kane, MD, co-author of The Good Caregiver: A One-of-a-Kind Compassionate Resource for Anyone Caring for an Aging Loved One , Carol Levine editor, Always on Call: When Illness Turns Families into Caregivers, and Cheryl Woodson, MD author of To Survive Caregiving: A Daughter’s Experience, A Doctor’s Advice on Finding Hope, Help and Health stressed the need for better training for health professionals and improving their communication and coordination with family caregivers.
Noting that family caregivers will face an even greater burden in the near and long term future as baby boomers reach older age and budget cuts exacerbate flaws in the current system , the panel called on policymakers, caregiving advocates, and health care professionals to:
* Educate Americans about what Medicare does—and does not—cover.
* Promote ways that people can talk to each other and share their stories, tips and wisdom.
* Urge a national discussion about how Americans approach advance care planning.
* Engage communities and faith-based organizations to offer both practical and emotional support to family caregivers and make communities more livable.
* Educate health care professionals, older adults, and their family caregivers about palliative care and how it can be integrated with health care and supportive services.
* Advance proactive public policies and programs to help people know where to find the right kind of care and help even before they need it, at an affordable cost.
These experts argued that better options are critically needed by American families to help them pay for long-term services and supports and that this must be a public policy priority. They also called on policymakers and health care professionals to develop better communication, coordination, and collaboration with caregivers, including paying attention to the health impact of caregiving on the caregivers themselves. Finally, they recommended support for family caregivers in policy initiatives including:
* payment and delivery systems that would offer practical and affordable resources to support care coordination, and reimburse health care and social service professionals for consultations with family members;
* requiring all government agencies with programs that potentially effect family caregivers to include a “family caregiving impact statement” for assessing the expected or potential effects of a proposal or rule on family caregivers;
* requiring new models of care tested under the Innovations Center at the Centers for Medicare & Medicaid Services to assess and address family caregivers’ needs;
* strengthening workplace policies to recognize and accommodate workers who may also have eldercare responsibilities..
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