Caring for Chronically Ill Older Adults: A View Over the Last 75 Years

Abstract

We explore major trends over the last 75 years that affect care provision to chronically ill older adults. We examine shifting demographics that have altered the nature and dynamics of family and formal care systems. Next, we identify changes in clinical health care approaches, including the rising population of chronically ill older persons and concerns about continuity of care. We conclude with an assessment of the growing impact of the technological revolution on both family and professional care.

Three-quarters of a century ago, the new Journal of Gerontology published an article by Noah (1946) on “Care of the Chronic Aged Sick.” This article was a response to an influential paper published earlier that same year in The Lancet. Written by Margaret Warren, an English pioneer in the field of geriatric medicine, the paper was a call to arms for vigorous research and policy development aimed at improving care for older people.

Warren asserted that “today the profession and the country generally have to face a population with a greater number of elderly folk and fewer young people to assist or nurse them” (Warren, 1946: 6406). Noah (1946) concurred, concluding that these concerns also applied to the United States: “in Britain as in the United States, with the aging of the population the problem of caring for the aged sick is a huge and ever increasing one” (Noah, 1946: 486).

Drs. Noah and Warren’s assessments still apply today. Care concerns are identified as a crisis both by researchers and the media, noting a critical shortage in the geriatric work force (Lee & Sumaya, 2013) and a diminishing supply of family caregivers for the baby boomers as they age (Gaugler & Kane, 2015). Advances in diagnosis and treatment of acute medical conditions have increased the life span. However, current health care delivery models are ill-equipped to treat and manage chronic illnesses, and limited progress has been made in improving outcomes for the vast majority of chronic conditions.

In this article, we discuss major trends since Noah’s and Warren’s interchange that affect caregiving. Space limitations prevent an exhaustive analysis; we therefore limit our focus to highlighting changes and continuities in: (a) demographic shifts that have altered the nature and dynamics of family and formal care systems; (b) clinical health care approaches; and (c) the impact of the technological revolution on caregiving.

Changing Population Dynamics and Locations of Care

Over the past 75 years, the changing nature of the intergenerational family has shaped the experience of people as they age and need care. It is especially important to consider the shifting experience of caregiving between the baby boom generation and that of their parents, who are now the oldest-old. The baby boomers are causing an enormous surge in the older population and their experiences are likely to differ dramatically from their parents. We must look at the baby boom generation as both the care-providing children of very old parents and as a group increasingly in need of care from their own family members.

A striking change in caregiving relations results from the lengthened expected lifespan, from 68 years in 1950 to 79 years at present (Mather, Jacobsen, & Pollard, 2015). Family members are spending more time than ever before occupying intergenerational family roles. The proportion of people in mid-life and beyond with a surviving parent has increased dramatically. Just between 1988 and 2007, the percentage of people age 45–64 with at least one surviving parent increased from 47% to 62% (Wiemers & Bianchi, 2015). The longer life expectancy has two consequences that will affect generations to come. First, many baby boomers are still engaged in care for their parents while they are also providing support for children and grandchildren. Second, the children of the baby boomers can look forward to even longer periods of time spent caring for their parents.

Changes in family structure make it likely that baby boomers are having an easier time caring for their parents than their own offspring will in the future. Pressure on boomer siblings has been mitigated because their parents were likely to be married and therefore could rely on their spouses for care; younger people today have higher rates of remaining single and of divorce than their parents (Mather et al., 2015). Thus, persons now in late middle age will enter old age in greater numbers without a partner, and therefore are likely to require more support from their children.

However, given that they are more likely to have only one, two, or no children, such family support will be in limited supply for boomers (Fingerman, Pillemer, Silverstein, & Suitor, 2012). The boomer generation can share caregiving responsibilities among multiple siblings due to the high fertility of the post-war generation. Research has established that family members now, as in the past, provide much of the care for frail older individuals (Schulz, Beach, Czaja, Martire, & Monin, 2020). Few good answers have as yet emerged regarding what will happen when large numbers of individuals in need of care have few or no available family members to assist them. A pressing challenge for societies around the globe is how they will adapt family caregiving policies to this new demographic reality.

An additional demographic trend affecting care is the increasing diversity of the population aged 65 and older. The racial and ethnic minority percentage of the older population increased from 10% in 1970 to 20% in 2010. It will increase to over 40% between by 2050. From 2% in 1970, almost one-fifth of the older population will be Hispanic in 2050 (Seltzer & Yahirun, 2014). African American and Hispanic older adults have higher rates of activities of daily living (ADL) limitations than their White counterparts; the rates are even higher among low-income minority older people (Thach & Wiener, 2018). Throughout the life course, racial and ethnic minority individuals experience threats to inclusion and an accumulation of disadvantage (Lichter, 2013). Ensuring equity of care resources throughout the population is an important priority over the coming decades.

The range and configuration of long-term services and supports for chronically ill older people at present also has changed over the past 75 years. Although family members continue to be the major providers of care, nursing homes are increasingly relied upon for care of the frailest older people. In the first half of the 20th century, even the most impaired older people who had family members were usually cared for at home, with group living settings largely populated by individuals who were impoverished and alone (Decker, 2005). Over time, a notable change has been the increasing impairment of nursing home residents, with the percentage requiring heavy or total ADL assistance climbing steadily since the 1960s (Decker, 2005).

Although moving the care of the most impaired older people into nursing homes has relieved some of the burden on family members, one feature of nursing homes has not changed: persistent concerns about quality of care. From earlier exposés (Vladeck, 1980) to contemporary concerns about abuse (Weinmeyer, 2014), policy makers and media have continually noted deficiencies in care and called for reform. Advances have occurred in regulation and in care practices, but this challenge, little altered over 75 years, will urgently need to be addressed as the baby boomers stress the entire long-term care system over the coming decade.

There are also indications of positive changes that may mitigate the strained balance between family and formal care. After reaching a peak in 1990, rates of institutionalization for older people have declined somewhat (Crimmins, Zhang, & Saito, 2016). This decline is due in part to improved medical treatments (especially in coronary and vision care), improved health promotion, and rising educational and socioeconomic levels among some population groups (Chernew, Cutler, Ghosh, & Landrum, 2016; National Academies of Science, Engineering and Medicine, 2016). It also results from an expanding array of long-term support services since that has occurred since the 1950s (Achenbaum & Carr, 2014). In particular, the dramatic growth in assisted living and other forms of senior housing provides alternatives to nursing home care (Fernald, 2018).

Transformations in Health Care Approaches

Significant advances in medical sciences and technology over the past 75 years have led to major transformations in both the types and intensity of health care aging adults receive, affecting family caregivers in multiple ways. A nonexhaustive list of advances over this period includes intensive care units to treat patients with respiratory failure; hemodialysis units to support patients with kidney failure; coronary catheterization units, bypass surgery, and angioplasty to treat patients with coronary disease; organ transplantation for patients with end-stage organ disease; a panoply of antibiotics to treat patients with infectious illnesses; as well as a vast array of chemotherapies and biologicals (e.g., stem cell therapy, immunotherapy) to treat patients with cancer.

These advances have helped many older adults lead longer and better lives. However, they also lead to a greater number of years living with multiple impairments. For medically ill older adults in the hospital setting, family caregivers often serve as the care recipient’s primary decision makers. This process entails navigating decisions around whether to undertake or continue life-prolonging treatments or to pursue comfort measures, often over repeated hospitalizations. Many family caregivers who have to make these decisions experience emotional burden that can persist over the long-term (Hebert and Schulz, 2006). Having advance directives in place appears to mitigate this risk among surrogate decision makers, but does not eliminate the stress involved (Hickman & Pinto, 2014; Sullivan & Slatore, 2015).

A second major change in health care that affects caregiving involves a shift in the way it is reimbursed. The creation of Medicare in 1965 provided health care coverage to eligible persons ages 65 and above to include the costs of inpatient hospital care (Part A). To help curb skyrocketing healthcare costs that occurred as a consequence of this reimbursement practice, Medicare adopted a prospective payment system in 1983 that paid hospitals a predetermined amount of money using a diagnosis-related group (DRG) mechanism. The DRG approach categorized patients by way of illness severity and associated costs of care.

Major consequences of this change included significantly shorter hospital stays and a shift to care and service provision out of the hospital into the home and community, placing even more burden on family caregivers. Over the past four decades, caregivers have been expected to perform complex medical tasks at home. These responsibilities include managing complex medication regimes—administering injections, maintaining feeding tubes and catheters, operating specialized medical equipment, and performing wound care—a process referred to as the medicalization of caregiving. Caregivers must take into account the overwhelming desire of most older people to “age in place” despite increasingly complex medical conditions (Binette & Vasold, 2018).

A final trend that affects caregivers is the problem of health care fragmentation. Over the past 75 years, medical care has undergone a significant transformation with respect to specialization. In the 1950’s, very few physicians pursued careers as subspecialists (e.g., cardiologists, gastroenterologists), whereas as recently as 2015, the vast majority of medical graduates entering residencies in internal medicine (88%) planned to work as subspecialists (Dalen, Ryan, & Alpert, 2017).

Thus, in 1945, a typical 75-year-old adult would likely have made a single visit to see his or her general practitioner over the course of a year. Sixty years later, a typical Medicare beneficiary would see a median of two primary care physicians and five subspecialists working in at least four different practices over a 12-month period (Pham, Schrag, O’Malley, Wu, & Bach, 2007). This trend is likely to persist, thereby increasing the work of many family caregivers who not only help to coordinate these visits but attend them as well. Health care fragmentation is endemic in the U.S. health care system and other countries and significantly increases the burden of family caregiving (Taylor & Quesnel-Vallée, 2017).

Advances in Technology

Both professionals and caregivers from the 1940s would be astonished at the technological advances that have occurred over the ensuing 75 years. We are still in an early stage, however, of fully exploiting these innovations to improve caregiving. It is likely that existing and emerging technology applications can help address the pending shortage of both professional and family care providers for older adults and the increased demands on informal caregivers discussed earlier. These applications can be used to facilitate medication and disease management; monitor functional and cognitive status; enhance safety and access to care; and improve communications and social connectivity.

Technology can also be used as a mechanism for intervention delivery. This strategy may be especially helpful for older adults in rural locations or whose family members are employed or live at a distance. These technologies include computers and mobile devices, telemedicine, e-health applications, and sensing and monitoring systems. In the future, there will be continual innovations and advances, such as developments in robotics, wearables, artificial intelligence, and virtual reality applications that can facilitate the support of aging adults (Czaja, 2016; Schulz, 2013; Vollmer Dahlke & Ory, 2017).

For example, embedded or integrated activity-monitoring systems can track and detect changes in activity patterns, such as movement (e.g., time spent in bed) or sleep, and allow for real-time transfer of information to health care providers or other family members. These systems will help caregivers to detect changes in a care recipient’s functional status or medical condition, enabling early intervention and prevention of worsening of conditions or hospitalization (Kaye et al., 2011; Mirelman et al., 2016). Other technologies can track medication adherence, monitor vital signs and other health indicators, or provide reminders about health-related activities such as medical appointments (Czaja, 2016).

Also noteworthy is the increased potential of the “internet of things” (i.e., the interconnection of computing devices embedded in everyday objects that allows them to send and receive data), as well as the rise of ubiquitous computing. These innovations offer potential for unobtrusive monitoring of health indicators and the ability to simultaneously and continuously monitor environmental conditions, daily activity patterns, vital signs, and sleep patterns. In general, older adults have positive perceptions of “smart technologies” in terms of enhancing their ability to live independently. However, there are concerns about privacy, usability, and the cost associated with these systems that must be considered as these technologies expand (Chaudhuri et al., 2017; Demiris et al., 2004).

Investigators have found that technology applications are useful for caregivers in terms of enhancing emotional support and knowledge about caregiving and strategies to help facilitate caregiving tasks (Czaja, Loewenstein, Schulz, Nair, & Perdomo, 2013; National Academies of Science, Engineering and Medicine, 2016). Caregivers are generally receptive to using technologies to help them monitor and support care recipients with task activities. They are also willing to pay at least a limited amount for these technologies (Schulz et al., 2015). Examination of technology applications to support family caregivers has grown tremendously over the past decade and promises further advances.

Although technology holds promise in terms of providing support for older adults and reducing the demands and associated stress of caregiving, these systems and applications must be designed to be useful, usable, and reliable for all potential user groups. Unfortunately, all too often technology applications are designed without accounting for the needs, preferences, and abilities of users. In this case, the user group is broad and includes older adults and informal and formal care providers. Systems and applications must also be affordable and accessible. Currently, a digital divide still exists for many older adults such as those who are of lower socioeconomic status, minority, live in rural locations, or are in the older cohorts (Anderson and Perrin, 2017). Provision of training and technical support is also critical to successful technology adoption.

Conclusion

The past 75 years have seen patterns of both change and continuity in caring for chronically ill older people. Technological advances have occurred that could not have been anticipated by a gerontologist or geriatrician in 1945. Similarly, changes in family structure, including the rise of blended and alternative family forms and the growth in women’s employment outside the home, were largely unanticipated. Concerns about the failure to create a system of care in which chronically ill older people can live life to its maximum potential, however, constitute an enduring theme over the past three-quarters of a century.

The coming 75 years undoubtedly will bring further changes. Most obviously, the aging of the population will continue unabated, especially among the oldest-old. In 20 years, the oldest baby boomers will increase the population ages 80 and above to 28 million people, more than three times that of 2000 (Fernald, 2018). Developing evidence-based methods of supporting the increasingly limited number of family caregivers to this exploding population represents an urgent priority over the coming years, as is improving management of chronic illnesses. A major challenge, given growing numbers of chronically ill older people and diminishing family support, is the critical workforce shortage. The inability of the labor market to keep pace with the number of older adults in need of services (Spetz, Trupin, Bates, & Coffman, 2015) is a significant threat to care systems and requires urgent academic and policy attention.

Finally, advances in the potential of technology to assist both family and professional caregivers represent a dramatic change over the past 75 years. However, that potential has yet to be reached beyond preliminary advances. To truly capitalize on its promise, we need a strong-evidence base regarding which technology applications are most beneficial to whom and in what context. Further, to advance policy in this area, data on the cost effectiveness of technological solutions to care challenges is warranted. Similar to Warren’s and Noah’s plea in 1946, the coming years require careful research and policy development to achieve the optimal mix of human and technological solutions to caring for the chronically ill older population.

Funding

This work was supported by an Edward R. Roybal Center Grant from the National Institute on Aging (P30AG022845).

Conflict of Interest

None reported.