Multiple news stories recount the same sad story. Lockdowns and social distancing are necessary public health interventions to prevent widespread COVID-19 infections that would overwhelm hospitals and run-up a sad tally of dead and disabled Americans. But these interventions mean America’s families struggle to balance multiple commitments: care for sick or disabled relatives, raise and educate children, and work. Family members of residents of long-term care facilities that restrict visitors are reporting rapid declines in their relatives’ health and well-being. These awful events display how “visitors,” often a spouse or adult child, are long-term care institutions’ essential but hidden caregivers. They effectively staff the understaffed and under skilled facilities. The surge in unemployment is further stressing families’ resources to care.
For me, these terrible events aren’t news. In my 20-plus years at the Penn Memory Center caring for older adults living with dementia, I’ve witnessed caregivers, typically women, reduce or even give up work to care for an aging parent or parent-in-law and struggle to find quality services and supports such as an adult day activity program or some extra help at home.
Before COVID, nearly 18 million people were caregivers. They worked to sustain the lives of older adults living with disabilities or in their slow journey of recovery from sickness back to health. Most were family or friends. The tally of their uncompensated time and effort is a staggering figure. Each year, the wages foregone by caregivers of persons living with dementia, for example, adds up to billions of dollars. This is money a family could have used to purchase a car, pay a college tuition or saved for their future care and contributed to social security. Those whose profession is caregiving, the formal caregivers, receive a paltry wage. Last year, the average personal care aide received about $12 per hour. In just a few months, COVID has multiplied these staggering facts and figures and amplified the burdens of caregiving in America.
And yet, as bad as things are, I’m cautiously optimistic.
These awful events might inspire America’s leaders to finally strive to achieve a greater good. This election could undo bitter partisan warfare instigated some four decades ago when the Republican Party was overrun by an anti-tax and anti-government sentiment.
Democratic presidential nominee Joe Biden has plans. Formal caregivers will receive training and increases in their wages. Family caregivers will receive a $5,000 tax credit to compensate for the lost wages or out-of-pocket expenses. The waitlist for Medicaid’s long-term care services for impoverished older Americans will be eliminated.
In 2016, presidential candidate Donald Trump supported a similar tax credit. President Trump’s 2017 tax measures didn’t enact it. Trump’s campaign website doesn’t mention caregiving. There are no proposals to address the needs of America’s caregivers. The Republican health care plan is not a plan, but an ideological riposte. Any plan Democrats propose is dismissed with one word: “socialism.”
Once upon a time, but not that long ago, things were different.
In 1988, there was close to bipartisan agreement on the left and the right to support caregivers. In that election year, a coalition of 140 organizations created “Long Term Care ’88,” a movement for social and political change.
“It was all about social insurance,” Stephen McConnell, the director of the campaign, recounted to me in a recent interview. “We’d done a lot of polling. The public supported it. They’d be willing to pay extra money in taxes.” The goal was passage of a social insurance program like Medicare and Social Security, paid out of payroll taxes, that would provide long-term care for all Americans.
The campaign featured the bipartisan pair of senators from Iowa (Republican Charles Grassley and Democrat Tom Harkin) interviewing each presidential candidate at public forums on long-term care. The candidates’ comments were edited into a three-minute ad broadcast before caucuses and primary elections. Every candidate – Republican and Democratic – supported the idea, except one: George H. W. Bush. He went on to win the presidency in a landslide.
An anti-tax and anti-government sentiment soon dominated the Republican Party. In Bush’s successful campaign to succeed Ronald Reagan, he promised “Read my lips: no new taxes.” His support for a 1990 increase in marginal tax rates enraged enough members of his party that his 1992 reelection campaign faced a crippling primary challenge. Congressional leadership embraced a strict position of tax cuts and no tax increases.
The April 1990 National Reporter recounts Alzheimer’s disease advocates’ visit to Rep. Tom DeLay’s (R-Texas) congressional office to make their case for long-term care insurance. “Though DeLay greeted the volunteers warmly and assured them that their issue was ‘dear to my heart,’ he cooled when the talk turned to the need for a federal long-term care program.” After the activists left his office, he explained to the reporter, “That’s where we may break ranks. No one has yet told me how we’re going to pay for this.”
The 1994 Republican take-over of the House, Newt Gingrich’s ascent to the speakership, and DeLay’s to majority whip, launched the Republican revolution. Bipartisan consensus to design and support a long–term care social insurance program collapsed. The governing philosophy was to shrink government, lower taxes, reduce spending and shift health care from federal to state governments. Caregiving became a families’ private responsibility. America’s caregivers became collateral victims of a 30-year-long ideological battle.
COVID should put an end to this decades-long neglect. It has created a vast common space of suffering and so a coherent, widely understood narrative. Suddenly, we’re all caregivers or in need of caregivers. Now, we all feel and understand the struggles of persons living with chronic diseases such as dementia and heart failure, and their families. Our common story is that caregivers are essential workers.
Politicians need to listen to these stories. As they do, they’ll find themselves back to the years before 1988, when both Republican and Democratic lawmakers recognized that America’s caregivers need an infrastructure to support their work.
Jason Karlawish is a professor at the University of Pennsylvania Perelman School of Medicine, co-director of the Penn Memory Center and author of “The Problem of Alzheimer’s,” forthcoming in February 2021.