Taken from the January/February 2013 issue of the Women's Health Activist Newsletter.

Take, for example, Susan, who lives in Maryland with her family. Like many women, she has had to juggle the needs of both her immediate family and her parents. Susan recently lost both her mother and father. Sadly, what she and her family went through when Susan’s father became ill clearly illustrates how desperately we need to finish the job of reforming our health care system in order to better support families during health crises.

Susan’s dad began to show signs of Alzheimer’s Disease in the days after his wife’s funeral in 2008. He couldn’t find his pajamas, didn’t recognize the furniture in his home and, worst of all, couldn’t remember his late wife’s name. It was clear to Susan that he couldn’t continue to live on his own, and she and her husband decided to bring him to Maryland where they could care for him every day. Susan reached out to the local Alzheimer’s Association to get help putting together a plan to care for him in her home. Only then did she learn first-hand how disjointed our health care system is.

For Susan, the challenges began with the need to convince her dad’s neurologist that what he called “memory loss” truly was Alzheimer’s Disease. Like many older individuals, and people with Alzheimer’s, Susan’s father had multiple health problems and saw five different doctors for five different conditions. Susan knew she needed a plan, so she created a spreadsheet to keep track of her father’s care, including the drugs he took and the doctors he saw. She took a copy of that list with her to every one of her father’s medical appointments. She quickly realized that, because of our disjointed health care system, it had become her responsibility to coordinate her father’s care. Whenever one of his doctors prescribed a new drug, Susan checked with the other providers to make sure there wouldn’t be any dangerous interactions between the medications. When he had to go to an emergency room, she described herself as “standing guard” over her dad to make sure no harm came his way.

Unfortunately, Susan’s full-time juggling act is all too typical. According to a report by the National Alliance for Caregiving and AARP, more than three in five caregivers of adults (66 percent) are women.ⁱOver one-third of these caregivers (37 percent) also have children under age 18 living at home. Susan’s dad’s significant health needs are not uncommon either. Most older Americans (90 percent) have at least one chronic condition such as diabetes, heart disease, or arthritis; 77 percent of Americans over age 65 have multiple chronic conditions.ⁱⁱ The average 75-year-old has three chronic conditions and takes five different prescription drugs.ⁱⁱⁱ Older adults who have five or more chronic health conditions, on average,see 14 different doctors, make 37 doctor visits, and fill 50 separate prescriptions each year.^iv

Coordinating all of these providers, visits, and medications is an enormous task, which many caregivers do without the support they need from the health care system. The lack of coordination is expensive for us as a society, as well, and results in unnecessary costs stemming from harmful drug interactions, duplicate tests and other procedures, conflicting diagnoses, and contradictory medical instructions.

Although caregiving is often a labor of love, it can be harmful for the health and economic security of caregivers as well. Many Americans are exhausted and overwhelmed by their caregiving and coordination responsibilities, and this is particularly true for women who hold jobs outside the home. According to the Evercare and the National Alliance for Caregiving survey of unpaid caregivers, one in three caregivers used their savings (34 percent) or cut back on basic home maintenance (32 percent), and nearly one in four caregivers (23 percent) cut back on spending for their own health or dental care, in order to help with the expenses associated with caring for their relative or friend.²

Women can be particularly financially threatened by their caregiving responsibilities. According to a MetLife survey, “For women, the total individual amount of lost wages due to leaving the labor force early because of caregiving equals $142,693. The estimated impact of caregiving on lost Social Security benefits is another $131,351. Thus, the cost impact of caregiving on lost wages and Social Security benefits for women equals $274,044.”^v

Fixing these broken aspects of our health care system will make an enormous difference for women and families in the “sandwich.” One of the Affordable Care Act’s (ACA) major goals is to work with patients and their caregivers, doctors, nurses, hospitals, health plans, and others to create a patient-centered system that coordinates medical care. There is so much heat around the new health care law that it’s easy to lose track of the law’s benefits. The simple truth is that “Obamacare” contains key ingredients that will transform our health care system from one that is shaped by providers’ interests into one that is dedicated to providing the services and supports patients and families need. That change is long overdue.

To help ensure passage of the ACA and its successful implementation, activists formed the Campaign for Better Care in 2010. Led by the National Partnership for Women & Families, it has formed a broad-based consumer coalition that is working hard to make sure the ACA addresses the needs of the Sandwich Generation and other family caregivers.

Our successes include making sure the ACA prevented insurers from charging women more simply because of gender, guaranteed access to preventive care without co-pays and deductibles, and gave older women access to an annual wellness visit and help paying for their prescriptions. We also worked to make sure that parents like Susan can keep their kids on their insurance policies until age 26, are no longer vulnerable to annual or lifetime caps on benefits, and prevent insurers from refusing to cover pre-existing conditions. These changes are already improving the lives of caregivers and other Americans.

Some of the ACA’s most important provisions will improve care for patients by testing innovative approaches to delivering patient- and family-centered care; improving communication and collaboration among providers; and ensuring safer transitions when patients move across settings, such as going from the hospital to their home. It will be a few years before those changes fully take effect but, when they do, things will improve even more for women like Susan.

Health reform won’t magically solve the many challenges associated with caring for multiple generations of family members. But it will help create a health care system that supports us and our loved ones at our time of greatest need. That’s the kind of sandwich I can go for. Learn more about the Campaign and other caregiving resources at: http://www.nationalpartnership.org

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Debra L. Ness is president of the National Partnership for Women & Families, which leads the Campaign for Better Care.

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