Winter 2008

Elder Home Care — Workforce Challenge For the 21st Century
By Larry D. Wright, MD, FACP, AGSF
Aging Well
Vol. 1 No. 1 P. 32

As more people age at home, the need for trained caregivers increases. Expanded recruitment of home caregivers and setting national certification standards are a good start to the solution.

There’s an all-too-familiar scenario for professionals in the American healthcare system working with older adults and their families. It typically begins with a trigger event such as the following: A widow living independently becomes hospitalized for an acute illness. Just prior to being discharged, she learns that she must have assistance with self-care at home. The alternative is admission to a nursing facility until she fully regains her independent functional status.

The patient and her family inquire about available home caregivers for hire, only to find the hospital discharge planner is aware of just a small list of individuals who do that work in the area, and most are completely booked. As an alternative, he offers a list of home care agencies which, though more expensive, will provide the same type of caregiver. What often follows is the stressful experience of learning firsthand the reality of our country’s limited resources and support available to keep older people at home.

The scarcity of workers who offer home care is just one way the system fails to provide what older patients and their families need to remain in their homes. The shortage is pervasive, affecting every aspect of this particular direct-care workforce. The reality is that the number of available employees is insufficient for the current need, and the prospect of the supply meeting the demand in the future looks even bleaker.

Broadly speaking, the term home caregivers encompasses four different sources. There are two types of state-paid workers: personal assistants supplied through a Medicaid-reimbursed program and Medicare-covered aides working for a certified home healthcare agency. Similarly, there are two different privately paid workers, both of whom are paid either out of pocket by the recipient and/or family or, occasionally, by private long-term care insurance. These are generally independent contractors or workers employed by a home care agency.

The other major factor in learning to navigate the noninstitutional long-term care system is possibly of greater concern—the widespread lack of training within the formal workforce. Neither training nor certification is required among those in the two groups representing privately hired workers. Even more surprising is the inadequacy of the training provided for many of those in the government-paid groups. By contrast, the prerequisite of full training and certification as certified nursing assistants (CNAs) is strictly enforced for care delivered by new frontline employees in the institutional setting of a nursing home.

Most Long-Term Care Occurs in the Home
According to the 2002 Health and Retirement Study sponsored by the National Institute on Aging, approximately 8.7 million older adults in the United States are receiving long-term care in the home as defined by the need for assistance with at least one activity of daily living (ADL). Of those, 2 million are classified as severely disabled or having three of more areas of ADL dependency. To put this in proper perspective, one must remember that the total population of elders receiving long-term care in nursing homes is estimated to be 1.4 million.

Not only are most older Americans who require long-term care receiving it at home, but the overwhelming majority prefer to remain there, no matter how dependent or disabled they may become. Recent Census Bureau data show the percentage of adults 75 and older living in nursing homes has declined significantly over the last 15 years, from 10.2% in 1990 to 7.4% in 2006. The oldest elders are less likely to reside in nursing homes now—16% of those over 85 live in one compared with 21% in 1985, according to the National Nursing Home Survey.

Unfortunately for frail elders, it’s still true that the single most important determinant of whether an individual will have to move to a nursing home is the presence or absence of an adult female relative willing to serve as primary caregiver. This perception hasn’t changed over the last several decades, but the reality of how much family caregivers can be relied on in the future may change with the demographic trends of the aging population and the shifting makeup of the American family.

The “informal caregiver workforce,” a euphemism for unpaid family caregivers, provides 75% to 80% of the care for older adults at home. By any standards, this represents a huge contribution to long-term care in the country. In economic terms, it has been variously estimated that this group saves the country up to $257 billion annually.

Currently, the representative baby boomer couple has more living parents than children. That alone points to a major part of the coming crisis in caregiving for the next 30 to 40 years. The backbone of home-based elder care—the informal caregiver workforce—is a fragile, stressed-out group. Vulnerable to the risks of burnout, depression, personal health issues, inadequate personal finances, insufficient support from other family members, lack of respite, and limited community services or resources, the family caregiver simply cannot continue to be the main solution to in-home caregiving needs.

With the changes in the American family as another contributing factor, the landscape of future elder caregiving becomes even more challenging. Fewer children per family, more childless couples, higher divorce rates, and adult children residing at greater distances from their parents are just a few factors that directly influence the ability of family caregivers to continue to carry the load they have traditionally.

System Overhaul?
A mounting consensus among the professional healthcare and social services communities favors a thoughtful, comprehensive overhaul of the long-term care system in the United States. Among the desired objectives would be accommodating the general preference for care delivered in the home rather than an institutional setting.

However, reaching an agreement on how to change the long-term care system would likely be far less difficult than implementing the change. If financing the new system is removed from the discussion, the biggest obstacle would arguably be workforce shortages, and the most taxing of these would undoubtedly be the inadequate number of frontline caregivers (personal care assistants and nurse assistants) to provide home care for functionally dependent elders. Any such rational reorientation of the system would result in a new emphasis on home care as part of a more integrated system where care followed the patient rather than being unreasonably restricted to institutional settings.

The interest in meaningful change for the long-term care system and concern about workforce shortages is hardly limited to the professional community. This is reflected in the consensus findings of the 2005 White House Conference on Aging, which involved 1,200 representatives from a wide cross section of concerned individuals nationwide. They were charged with bringing 50 recommendations for addressing the challenges of our aging society. Two prominent issues noted in the conference’s final report were improving America’s long-term care system and addressing caregiver workforce problems, with proposals directly involving them included in five of the top 10 and nine of the top 20 recommendations.

Increasingly, learning to live with chronic diseases dominates the health concerns of older adults heading to retirement and beyond. As more of the population enters the later years of elderhood, the toll of chronic diseases superimposed on the aging process and physical deconditioning leads to mounting numbers of dependent and disabled persons requiring long-term care.

However, the American healthcare system is not focused on the issues arising from increasing chronic disease and, least of all, on the resulting dependency and increasing need for long-term care services. Instead, it is a system that has been built and sustained on a model of addressing all health concerns using cutting-edge, high-tech, second-to-none acute care interventions. It has captured the imagination of the world with its ability to rescue, resuscitate, revive, cure, and fast-track in the delivery of acute care.

Meanwhile, the progressive demographics of our aging society brings an ever-increasing number of older adults into the healthcare system. The fastest growing segment—the over-85 group—also has the greatest prevalence of chronic diseases, frailty, and dependency. As a result, in 1995, for the first time, the American healthcare system provided more units of chronic than acute care, and the trend will likely not be reversed in the foreseeable future.

The pervasiveness of the system’s acute-care emphasis is best demonstrated by the inherent administrative and regulatory focus of Medicare. Ironically, the very population whose health is increasingly defined by chronic disease finds itself subject to the qualifications and restrictions of a third party payer that embraces the acute care template.

Clearly, the majority of long-term care already occurs in the home. The description of the current system as being “institution centered” reflects the system’s emphasis and bias with respect to regulatory standards of care, reimbursement, and entitlement. With the disproportionate numbers of individuals receiving care at home, it’s paradoxical that most of this care seems to occur outside the system rather than within a more integrated situation.

Boomers Present Different Picture
The overall inadequacy of the long-term care system to satisfactorily meet the current and projected demands for the burgeoning older population seems to be continually more evident. What may only become apparent later is the less-accepting attitude of future elders—the baby boomers—toward the limited options offered by the system to deliver the care they most need and desire. Currently, they’re experiencing the system as caregivers for their older parents and don’t like what they’re finding. Having previously considered aging from a more superficial viewpoint as the leading edge of the culturally transforming youth movement, boomers are receiving a wake-up call on the reality of the “golden years” through their difficult decision making as caregivers.

In particular, it’s almost certain future retirees won’t find the current institutional bias to be satisfactory and will be even more insistent on receiving needed care in their home. Those most needing long-term care services now have been reluctant to complain, though they’re often displeased. At the risk of stereotyping, it does seem that among their many cited virtues has been their sacrificial willingness to accept the undesirable rather than risk “being a burden” to family or society.

It’s a safe bet this won’t be a feature of the boomers’ late-life personality. If their parents could be described as accepting, they’re more aptly labeled as demanding. And the political clout attributed to boomers may be brought to bear on issues that impact them in any major way. It’s difficult to think of many issues that touch boomers more personally or universally than the challenges related to caregiving of older adults—their parents at present and themselves over the next few decades.

Not Part of Broader Reform
But even with the political muscle boomers may possess, the prospects of having a dramatic effect on the currently entrenched long-term care system would be, at the very least, problematic. It is widely believed that meaningful system reform will await the completion of the larger battle for general reform of the American healthcare system. Apparently, taking up the fight only for major long-term care change would further tangle the already complex undertaking of broader healthcare reform. For that reason, it won’t be seriously addressed until the latter has been accomplished.

This isn’t to say progress can’t be made toward significant improvement of many deficiencies currently faced in long-term care, especially with respect to the home caregiver shortage. If the issue remains unaddressed for another decade, incentivizing the growth and development of this crucial workforce may be so far behind that we won’t be able to catch up. Starting now to make recruitment for home caregiving more attractive and effective can begin to make a difference. Setting national standards for training is needed, especially for those hired privately. National certification would be a positive factor in raising the credibility and competence of this workforce and could help address the low wage expectation. Finding creative ways to develop benefits will also be crucial.

Older adults and their families who struggle to maintain care in the home will increasingly need the respite well-trained home caregivers can provide. It’s only with a blending of family caregiving and the assistance of competent hired caregivers that we’ll be able to care for our growing older population in a way that allows them to avoid unnecessary moves to other living facilities.

Our current elders deserve it. Hopefully, the boomers will demand it.

— Larry D. Wright, MD, FACP, AGSF, is director of the Schmieding Center for Senior Health & Education and medical director of senior health at Northwest Health System in Arkansas.