The “Fierce Urgency of Now”: Geriatrics Professionals Speaking up for Older Adult Care in the United States

Abstract

A century ago, most older Americans had dozens of descendants and lived on a farm, so family members were usually able to provide needed support. But today, family structure makes care of older adults more difficult. Smaller families live farther apart, older caregivers have their own disabilities, and families are disrupted by divorce and substance use. Furthermore, family caregivers often must manage complicated technologies and risky medications.1 These volunteer caregivers now provide most of the personal care to older adults,2 losing an average of $300 000 in lifetime income and retirement security.3 The population aged 45 to 64 years, the peak caregiving age, will increase by 1% between 2010 and 2030 while the population older than 80 years will increase by 79%.4 Between 2015 and 2050, the number of frail and disabled older adults needing long-term supports and services (LTSS) will more than double,5 with the largest increases in the 2030s. A person at age 65 faces an average of 2 years of living with two or more activities of daily living dependencies, and one-seventh of us will be this disabled for 5 years or more,6 requiring near-constant personal care and attention from another person. Old age looks to become grim for most Americans. Fewer family caregivers, a low supply of healthcare workers, inadequate personal savings, shortsighted policies, and declines in pension plans will weaken both the availability of supportive care and the ability to pay out of pocket for the costs of disability in old age. Geriatricians in the 2030s may be able to prescribe very costly medications for older Medicare beneficiaries who cannot get supper. Most older Americans who live with disabilities will not be able to pay for adequate housing, food, medicine, and personal care. All who serve older adults must shoulder the responsibility to help avert this oncoming suffering and social disruption. The window of opportunity for effective change is already narrow; procrastinating for a decade will be too late. Much of the personal care for older family members will have to come from paid helpers. However, the paid personal care workforce is too small, too unskilled, and underpaid. Already, 2.8 million people, mostly women, work in these jobs,7, 8 and the number will need to grow dramatically.9 About one-fifth are recent immigrants,10 so policies to cut low-wage immigration would curtail availability. High demand and low supply should increase the pay and benefits, but state budgets for Medicaid and limited personal resources constrain this market. Having a large workforce doing very difficult and injury-prone jobs at less than a living wage should be unacceptable; however, paid caregivers have little power. Nevertheless, the rising number of older adults requiring these services will force some increase in pay and benefits. When the boomers were babies, most fathers had pensions, Social Security, and a mortgage-free home at the time they retired, and they mostly died quickly with their first serious health problem. In recent decades, many US companies have phased out pensions and employer-sponsored retirement savings and have had workers rely on individual investments and savings. Not only have employees not saved much, but the recession in 2008 hit late middle-aged people (ages 50-65 y) especially hard11 as they tried to deal with underwater mortgages, younger family members in distress, and job loss. Indeed, the median person coming to retirement in 2014 had only $15 000 in retirement savings beyond Social Security.12 The average retirement lasts 20 years,13 so most Americans have inadequate funds for housing,14 food, and medicines for much of their retirement, even if they can work to supplement income. Their first substantial illness will leave them destitute. Most Americans still believe that Medicare and Social Security protect them from the costs of long-term care,15 until they discover otherwise when their first family member needs LTSS. They then realize that Medicaid is their safety net, but Medicaid requires both severe poverty and substantial illness and disability, and then it provides mostly unappealing nursing homes. States are already buckling under Medicaid's costs, so they will probably make it even more difficult to access Medicaid in old age. Federal funding for community services to support disabled persons has been nearly flat for 2 decades.16, 17 One study identified eight cities with more than a 6-month waiting list for home-delivered food.18 A recent simulation of incomes and housing costs for the next decade concluded that 60% of middle-class older adults would be unable to afford a home by 2029.14 When I started working in long-term care in 1978, data showing the projected increase of people living past 80 years seemed reassuring. We had time to make changes to ensure retirement security and affordable healthcare for the oldest old. Because everyone knew that children in the 1950s would be in their 80s in the 2030s, surely we would make plans to ensure appropriate and affordable care! But we have not done so. Some assume that we will just have to raise taxes and count on Medicaid. Not only does that encounter stiff political headwinds, but it would not be enough. There will just be too many aging adults without housing, money, or self-care capabilities. Taking all of what we will need in the 2030s from contemporaneous taxes would severely weaken the economy, perversely making taxation less effective.19 Instead, substantial private savings are essential. That strategy reduces the tax burden and provides capital for investment, stimulating the economy. The lead time on savings, however, is considerable. If we hope to make a difference in the 2030s, people who are now age 45 to 60 must participate very soon. Savings for retirement while working must become easy to do and widely acknowledged as essential. Few people save for long-term care, few companies still offer long-term care insurance, and their policies have expenditure caps and exclusions along with frequent premium increases, making it both unaffordable and inadequate. Meeting the needs of disabled older adults requires a strong economy. This consideration adds to the moral claim that personal care workers need to be paid a reasonable wage and benefits because better compensation for low-income workers stimulates the economy. Without major changes, the advent of large numbers of disabled older adults will lead to economic downturns and many older adults without housing or food, leading to distraught families, the impoverishment of multiple generations as younger family members try to provide support, and despair. However, older adults and their families vote. They do not yet vote on these issues, but they will as they come to understand the situation. The resulting balance, in crude terms, will be between the citizens' push to provide more government support and the adverse effects on the economy. A future of comfort and meaningfulness for our frail and disabled geriatric patients, and ourselves, is still possible. We could learn to be a country that supports our older citizens while building strong communities, families, and economies. What it would take is a strong will to achieve this now because implementation will take a dozen years and that is all we have. How could this be done? First, the United States must incentivize saving for retirement and for long-term care. Cohen and colleagues simulated a very clever approach.20 The federal government would pick up the tail end of long-term care costs, but when that “tail” begins would depend on the disabled older person's lifetime earnings in Social Security. A minimum wage earner might qualify after 1 year, whereas a high earner might have to cover 4 or 5 years privately. This strategy would have some marvelous effects. It would add less than 1% to the Medicare tax. It would create a vibrant marketplace in private long-term care coverage or savings because people would know by midlife what they would need to avoid bankruptcy from LTSS costs. Insurance coverage would be more reasonably priced and stable because costs would be more predictable. Large numbers of people would avoid spend-down to Medicaid, and the investment of premiums would stimulate the economy. Second, we can develop “front-end” coverage at the start of a long-term illness or decline. Washington State has initiated a tax-based plan to provide $36 000 for front-end coverage.21 Minnesota is considering an added premium on Medigap plans in the state to accomplish similar goals.22 Hawaii has started a limited program to pay caregivers,23 as has the Veterans Health System.24 Third, the United States needs to invest in the work-readiness of young people. Half of our children are now born into poverty, covered by Medicaid.25 Many arrive at adulthood without marketable skills, and too many spend time in prison. Planning for a healthy economy in the 2030s must ensure that virtually all young adults are prepared for and engaged in productive work.19 Fourth, quality geriatric medical care and our many proven programs for improved service delivery must become widespread and standard. Fifth, we need a few dozen communities enabled to deliberately drive down the per capita cost of disability in older age while making services much more reliable and appropriate.26 Much of the experience of disability in older age depends on the happenstance of local community arrangements, so communities should take on a responsibility to monitor and improve system performance. Learning how much we could accomplish and how quickly requires enabling community-level innovation. Practitioners who know the challenges facing older adults living with disabilities must engage in public processes that can accomplish reforms. We need to know our political leaders, of whatever party, because the challenges of old age affect us all. Every leader, from the mayor to the president, must understand the issues and possibilities and count on us to provide facts and guidance. Professionals serving older adults need to push these issues onto the public agenda. Opportunities abound: in the upcoming election season, attend candidate forums and town halls to raise these issues; make allies of everyone who serves older adults—meal delivery volunteers, dementia caregiver groups, hospice teams, and so on. Push professional groups and interest groups to take up older adult care issues. Write op-eds and talk with local news outlets. If every professional working with sick and disabled older people spent 2 hours per month for the next 14 months, we would have hundreds of thousands of hours in civic action. The issues would be debated in the federal election cycle, and thus would be quizzed in polls and discussed as reasons to support one or another candidate. This would make it safe for some leaders to emerge, for Center for Medicare and Medicaid Innovation to undertake much bolder innovation trials, and for communities to learn to create highly reliable and efficient care arrangements. We have done this before: we developed hospice, the Program of All-Inclusive Care for the Elderly (PACE), Acute Care for Elders (ACE) units, palliative care, home-based primary care, and restraint-free nursing homes. Working to get the society to deal with long-term services and supports will sometimes be awkward or embarrassing, but together we can force LTSS onto the policy agenda. In his “I Have a Dream” speech, the Reverend Martin Luther King Jr. included the phrase “the fierce urgency of now” to call America to eliminate race discrimination without delay. All who serve older adults have an obligation and an opportunity to act now. We can avert the suffering that will be in store if current arrangements drift for the next decade. If we fail, old age will be uncertain for all and miserable for many. We can do better, and we should. The author has declared no conflict of interest for this article. The author is solely responsible for this writing. No sponsor participated.