There are Four Kinds of People in the World

One of my favorite quotes comes from a champion caregiver advocate and a Former First Lady, Rosalyn Carter. She poignantly said, “there are only four kinds of people in the world; those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers” (Carter & Golant, 1994, p. 3). To me, this represents the circle of life, and one of the leading survivalist reasons humans (and other mammals) thrive on relationships with others.

“In the United States, the vast majority of care that allows older people to live in their own homes is provided by family members who do not receive pay for their services. As the older share of the population increases, meeting the care needs will become more challenging for families. A variety of trends have contributed to a widening gap between older Americans’ need for care and the availability of family members to provide that care, raising the potential for growing unmet needs, a heavier burden on individual caregivers, and increased demand for paid care” (PRB, 2016, p. 1). The Sandwich Generation A consequence of society’s shift in waiting until older to marry and have children and having sequential marriages and additional children has been that women and men are sandwiched between caring for both their children and aging parents and grandparents at the same time. My mother married at 19 years-old and had three children by the time she was 24 years-old. Divorced at 29 and a single parent, she cared for my great-grandmother in our home while raising three small children. She remarried at 34 and had another child at 35. My mother at the age of 55 was a caregiver to both her parents, moving in with them, as an empty nester and single, again. I married for a second time at 39 and had two more children by the time I was 42 years old. I too, like my mother, became a caregiver while raising small children at home. However, I was 53 at the time. According to Goyer (2015), “65% of family caregiving is performed by a woman, age 49, who is caring for her mother and the caregiver provides on average 20 hours of care a week over a five-year period” (p. xix). “It is likely that this woman is also caring for her children and spouse and probably working full or part-time out of the home” (Rein, 2017, p. 6). Wickert, Dresden, and Rumrill (2013) call this type of caregiver “the Sandwich Generation refer[ring] to adults, usually between the ages of 40 and 60, who are raising children while at the same time caring for parents or grandparents. The Sandwich Generation does not discriminate – it includes people of both genders, representing all religions and every racial and ethnic group” (pp. 7-8). Moreover, “one out of every eight Americans between the ages of 40 and 60 is currently in the middle of the sandwich of care and responsibility, supporting minor children while caring for an elderly parent or grandparent at home” (Wickert et al., 2013, p. 8).

Lower Birth Rate My grandmother was one of twelve children. They make television shows about this size of a family today. “Approximately 80 percent of adults over age 65 have children, but this percentage is declining because of fertility rates” (Hooyman & Kiyak, 2011, p. 342). Some of the causes of a lower birth rate among families are the increased age of partners when they marry, rate of divorce, the number of women working full-time out of the home, birth control accessibility, and the cost of raising children in today’s society. The significance of a lower birth rate among families is that there will be fewer caregivers available to provide support to aging parents and selves. Goyer (2015) reports that “in 2010, there were seven potential caregivers between the age of 45 and 65 to care for one person 80 or older. By 2030, that ratio will decline sharply to 4:1 and by 2050, 3:1” (p. xix). Combine this statistic with the additional challenge in the lowering numbers of trained and educated health professionals, and we have a looming crisis in America.

Increased Life Expectancy

The average life expectancy is 78.1 and expected to increase to 82.6 in 2050 (Hooyman & Kiyak, 2011, p. 15). “This shift results mostly from advances in medicine. A result is a growing number of people who survive to old age, often with one or more health problems requiring long-term care” (Hooyman & Kiyak, 2011, p. 16). The impact that this reality poses is compounded by the lower birth rate, the delay in childbearing age, and the incidence of family dissolution. Not only will informal caregivers be diminishing in numbers, but those in need of care will also be increasing in numbers. In the long-term care business, this is not considered a problem, per se, since institutional care will be in peak demand. However, it is a dramatic change in societal values and beliefs, of the past, as we navigate how to provide familial care to our oldest-old with multiple chronic conditions in the absence of extended family. It will call for a change in societal views about long-term care and present a need to partner formal caregiving with informal caregiving.

Public Policy Model In my opinion, the most significant public policy initiative needed to face the challenges ahead requires an emphasis on helping caregivers navigate the system, to educate the public on long-term care options, and to provide outreach to informal caregivers to partner with formal caregiving services to ease the burden of care. “Complicating the caregiver burden is a health system in the U.S. that is hard to navigate, inefficient, uncoordinated, expensive, inaccessible, and at times, muddled with uneducated or uninvested health practitioners. My stress and anxiety as a caregiver come, in part, from the lack of support from the U.S. health care system. Since the stroke, my mother has received long-term support and services (LTSS) via countless of health care providers. Interactions and services received by LTSS providers include hospitals, primary care physician, neurologist, skilled nursing facility, outpatient therapy, home health agency, county health department, DARS, PACE, Department of Family Services, and the Department of Social Services (DMAS). Through all eleven LTSS provider or agency interactions, no one placed my mother on an LTSS tickler list or placed me as the caregiver on an LTSS mailing or email list to inform me of services available to either my mom or me. In the information age that we live in, I find this mind-blowing yet poignant as to the state of fragmentation of our health care system today. The system’s reliance on unpaid caregivers to not only care for our largest and growing vulnerable population; but to also navigate the complex web of services and financing of services without a social and healthcare schematic, is a national tragedy” (Rein, 2017, pp. 8 & 11). Specifically, the strategies needed to reform public policy are to strengthen, fund, and elevate current health policy and programs in the U.S. One example is to promote and fund the Older Americans Act (OAA) amended in 2000 which aids unpaid caregivers. The National Family Caregiver Support Program (NFCSP) was initially established to target older caregivers (60 years and older). The NFCSP was amended in 2006 to expand service to family caregivers of persons over 60 years old, caregivers of persons with dementia regardless of the age of onset, and caregivers of disabled children and adults between the ages of 19-59 (Qualls, 2009, pp. 210-212). “Although the NFCSP has brought national attention to caregivers from legislators, advocates, and policymakers, in 2010, approximately 700,000 caregivers had received services from the NFCSP costing $154,197,000 or $220 per caregiver annually (AoA, 2016, National family caregiver support program, p. 7). There are an estimated 43.5 million caregivers, so only 1.6% of the caregiver population is gaining support from NFCSP” (Rein, 2017, p. 12). Other specific strategies to improve public policy on informal caregiving include a focus on health information technology and portable electronic health records; focusing on the triple aim which includes improving the population’s health, improving the patient and family experience, and reducing the costs of care; and providing an outreach agency to partner with informal caregivers so that available services and care options can be used in adjunct to family caregiving. “Innovative programs have to evolve to help seniors and their caregivers” (Rein, 2017, p. 14). To conclude, I offer another quote by Rosalind Carter which resonates with me and many, many other caregivers, “People don’t want to admit that they are caregivers. They feel it is just their responsibility to care for a mother or a grandmother. Today's caregivers need to identify themselves as such and, in doing so, recognize the need for help and be willing to receive help” (Carter & Golant, 1994). Equally, public policy needs to recognize the value of family caregiving and be willing to offer more programs and services to protect and preserve the dwindling supply.

References Carter, R. & Golant. S. (1994). Helping yourself help others: A book for caregivers. New York: NY: Three Rivers Press. Goyer, A. (2015). Juggling life, work, and caregiving. Chicago, IL: ABA Publishing. Hooyman, N.R. & Kiyak, H.A. (2011). Social gerontology: A multidisciplinary perspective (9th ed.). Boston, MA: Allyn & Bacon. Population Reference Bureau (PRB). (2016, February). Family caregiving. Today’s Research on Aging, Issue 33. Rein, D. (2017, April 21). Caring for the caregiver. Unpublished paper submitted to SJCME. Qualls, S. H. & Zarit, S. H. (2009). Aging families and caregiving. Hoboken, NJ: John Wiley & Sons, Inc. Wickert, K.M., Dresden, D.S., & Rumrill, P.D. (2013). The sandwich generation’s guide to eldercare. New York, NY: Demos Medical Publishing, LLC.