My wife and I recently opened our home for nearly three months to care for a cherished family member and her spouse. What more valuable use of our home, time, and resources could we possibly have, we thought. And we were right. But there were costs—to our family finances, our privacy, and our working lives.
In a very small way, we experienced what millions of Americans live with, many on a constant, long-term basis. More than 65 million of us spend an average of 20 hours a week as unpaid caregivers. Looking only at people being cared for who are at least 50 years old, 90 percent of them are family members.
[See What to do About Retiree Healthcare Costs.]
Family caregiving is now experiencing the inescapable impact of several related trends:
1. The American family has splintered over the past 40 years. Women, the traditional caregivers, are more likely to work, to marry later, if at all, and to have fewer children. Older Americans are increasingly likely to live alone and far away from family members.
2. Older Americans are the nation's fastest-growing population group. Steady increases in life spans are a terrific achievement, but one that raises the odds that elderly family members eventually will become infirm and require care, perhaps for many years.
3. Healthcare costs have risen for years at rates far in excess of overall inflation. They are bankrupting our society. Medicare and Medicaid are running unsustainable deficits. Still, individuals are shouldering their own mountains of healthcare expenses. Studies have found that unanticipated healthcare costs, driven by accidents and chronic illnesses, are the largest cause of personal bankruptcy.
4. The extended recession and weakness in the economy have sapped pocketbooks and reduced people's ability to provide unpaid care to family members.
[See Pat Summitt, at 59, Takes on Alzheimer's.]
Half of family caregiving is provided to a mother (36 percent) or father (14 percent). Grandparents and in-laws each receive 11 percent of all caregiving, and spouses care for one another in 6 percent of the cases. These numbers come from research funded by MetLife in 2009, and sponsored by the National Alliance of Caregiving in collaboration with AARP. An Alliance spokesperson says the findings remain accurate.
More people—caregivers, as well as those being cared for—are older. Among caregivers, 55 percent are older than 50, compared with 47 percent in 2004 and only 38 percent in 1997. Among people receiving care who are at least 50 years old, 31 percent are 85 and up—the so-called "old old"—versus 24 percent in the earlier surveys.
Nearly everyone age 50 and older (96 percent) takes prescription drugs, and half of these people need help from caregivers with their medications. Half of all caregivers also hold full-time jobs, making for a lot of stress. Most caregiving is for long-term physical or mental conditions, and the average caregiving situation lasts 4.6 years.
AARP has been doing a terrific job researching and publicizing the rising societal weight of family caregiving. It also has looked at ways for individuals and institutions to improve a caregiving system that evolved in an earlier time before today's pressures appeared. Late last year, the group highlighted caregiving memoirs and advice of 10 authors. It showcased their work and analyzed the common challenges they faced.
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If you are involved in family care—either as the caregiver or recipient—here are 10 common realities of care that AARP identified. By learning to anticipate and cope with these challenges, the quality of care can improve. So can the caregiving stresses borne by family members, most of whom are trying to do what's right.
1. Caregiving is a role (and a relationship).
2. Families benefit from discussing preferences and decision making with each other and with healthcare professionals.
3. Long-term services and supports (LTSS) are expensive.
4. Communication, coordination, and collaboration are fundamental to good care.
5. The most vulnerable and traumatic points in healthcare and LTSS are transitions from one setting to another.
6. Some help and support to care for the caregiver is available if it can be found.
7. Being "proactive" is the key.
8. Public policy solutions are crucial.
9. Advocacy, at both the individual and system levels, is a fundamental part of caregiving in today's world.
10. Culture change is needed.
Here are the 10 authors and caregiving works that AARP highlighted:
1. Howard Gleckman, Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America's Most Urgent Health Crisis (New York, NY: St. Martin's Press, 2009).
2. Jane Gross, A Bittersweet Season: Caring for Our Aging Parents—and Ourselves (New York, NY: Knopf, 2011).
3. Robert L. Kane, MD, with Jeannine Ouellette, The Good Caregiver: A One-of-a-Kind Compassionate Resource for Anyone Caring for an Aging Loved One (New York, NY: Penguin Group, 2011).
4. Carol Levine, editor, Always on Call: When Illness Turns Families into Caregivers (Nashville, TN: Vanderbilt University Press, 2004).
5. Suzanne Geffen Mintz, A Family Caregiver Speaks Up: "It Doesn't Have to Be This Hard" (Herndon, VA: Capital Books, Inc., 2007).
6. Walter Mosley, The Last Days of Ptolemy Grey (New York, NY: Penguin Group, 2010).
7. Peter V. Rabins, MD, MPH, with Nancy L. Mace, The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer's Disease, Related Dementias, and Memory Loss, 5th ed. (Baltimore, MD: The Johns Hopkins University Press, 2011).
8. Jonathan Rauch, "Letting Go of My Father," The Atlantic, April 2010.
9. Gail Sheehy, Passages in Caregiving: Turning Chaos Into Confidence (New York, NY: HarperCollins, 2010).
10. Cheryl E. Woodson, MD, To Survive Caregiving: A Daughter's Experience, A Doctor's Advice on Finding Hope, Help and Health (West Conshohocken, PA: Infinity Publishing.Com, 2007).
Twitter: @PhilMoeller
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Bette Scott of PA 4:31PM February 03, 2012
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Dr. G of TX 9:29PM January 25, 2012