The pandemic has exposed a disorganized, inefficient and dangerous system of long-term care for older adults in the United States: Those 65 and older account for 80 percent of the deaths caused by covid-19. While more than 50,000 of those fatalities have occurred among people living in nursing homes or assisted-living facilities, at least as many older adults living at home have died as well, according to data from the Centers for Disease Control and Prevention and the Kaiser Family Foundation. The persistence of several myths has hampered efforts to reform the troubled long-term-care system.

Myth No. 1

Medicare pays for long-term care.

Half of the approximately 800 baby boomers who responded to a 2019 Insured Retirement Institute survey said they expected to rely on Medicare to pay for their long-term care needs. A 2016 AP-NORC poll found that, among respondents age 40 and older, the largest share, 38 percent, expected Medicare to foot the bill. Half as many in that same poll expected to rely on Medicaid.

But traditional Medicare does not pay for long-term care. While some Medicare managed-care plans are beginning to provide modest long-term support and services, these benefits are limited; for example, they may cover one weekly visit to an adult day program. By contrast, Medicaid, the joint state and federal health insurance program for the poor, pays for about half of all long-term care costs. Still, Medicaid long-term support and services are available only to those with relatively low incomes and modest financial assets. As a result, families often pay these costs out of pocket or provide care on their own with no paid support.

Myth No. 2

Most elderly people receive long-term care in nursing homes.

As the author of a book on caring for older adults, I’m often invited to speak to consumer groups about programs and services for frail older adults. In those sessions, I ask what comes to mind when I say “long-term care.” At nearly every event, most audience members respond by saying “nursing homes.” Nursing home care is so synonymous with aging that long-term-care insurance often is called nursing home insurance, even though nearly all new policies cover care in all settings, including at home. It is a bit like calling auto insurance Honda insurance.

The reality is that 14 million adults in the United States need long-term supports and services, according to AARP, based on government data, and of those only about 700,000 are long-stay residents of nursing homes, according to ATI, a consulting firm that analyzes nursing home data. Roughly 600,000 receive short-term post-acute care in skilled-nursing facilities, and about 500,000 are in assisted living or other long-term-care facilities. The remaining 12 million, 85 percent, live in their own homes or with relatives.

Myth No. 3

It is always better to age in place.

A 2018 AARP survey found that three-quarters of Americans age 50 and older wanted to stay in their own homes as they aged. People have been even more reluctant to move into long-term-care facilities since the coronavirus outbreak. Occupancy in many nursing homes fell sharply through the spring. A recent article in the Nation headlined “It’s Time to Abolish Nursing Homes” envisions “a world with home care for everyone: no more institutions.”

But aging at home is not always the best option, at least in today’s broken system of long-term care. It requires a strong support network, including active and informed family caregivers or a highly engaged community. People aging at home must overcome two challenges. First, the maze of services is often beyond their capacity to navigate. They may need to arrange home modifications, home care aides, transportation, medications, meal deliveries, adult day programs and coordination among many health-care providers. Second, living alone at home can be terribly isolating, which is itself a serious health risk. The pandemic has made this problem even more severe. Imagine an 85-year-old widow with dementia living alone in a suburban cul-de-sac, unable to leave her home or see visitors because of the risks of the coronavirus.

Some older adults now living in facilities could have theoretically remained at home. But for others, safe and fully supportive aging in place is unrealistic.

Myth No. 4

You'll need to parent your parents as they age.

There are at least three books with the title “Parenting Your Parent,” including one co-authored by a physician. The phrase implies a dramatic role reversal: An adult child takes on a new, dominant role in the family. Now, the child makes all the decisions: “Dad, you have to stop driving.” Or “Mom, it’s time to move into the nursing home.”

Older adults may need support from their children, but they don’t want to be controlled by them, and in any case that kind of dominance is not the equivalent of parenting. One of the great fears of old age is loss of autonomy, and many older adults resist allowing their children to take over their lives. At the same time, adult children often feel guilty about their inability to slow their parents’ decline and are driven to “do something.” The mix can be toxic.

Adult children should think of themselves as care partners, not caregivers. They’ll never really be parents to their parents, even if they provide intimate personal support for them, such as helping with bathing or going to the bathroom. “The senior generation wants to feel cared for but not controlled,” writes social worker Jennifer Axelson. “. . . They want to have a say — the final word — when decisions about their care are considered.” A 2018 study by Northwestern University geriatrics professor Lee Lindquist found that older people were more likely to accept support if they felt that, contrary to being parented, “by accepting help, they were in turn helping the person providing the help.” This is another way they feel they are preserving autonomy and independence as they age.

Myth No. 5

The government can jump-start private long-term-care insurance.

In August, the Trump administration issued a 64-page report aimed at “potentially making” private long-term-care insurance “more affordable and accessible.” Last year, during her presidential primary campaign, Sen. Amy Klobuchar (D-Minn.) proposed a tax credit equivalent to 20 percent of premiums. “We need to make it easier for people to get long-term-care insurance,” she said during a debate in January.

Yet there is no evidence that tax subsidies or other government incentives can create a thriving market for long-term-care insurance. American consumers purchased fewer than 60,000 traditional policies last year, down 90 percent from two decades ago. About 90 percent of insurance carriers have withdrawn from the market, unwilling to bear the risk of the very long periods of care needed by people with dementia and other persistent diseases. This has occurred even though premiums are partially deductible against federal income taxes, and 33 states provide some kind of tax subsidy.

Premiums can exceed $4,000 annually for a 60-year-old woman buying a midrange policy, a cost beyond the resources of many consumers. Insurers reject one-third of prospective buyers because they have pre-existing conditions or a family medical history of chronic disease such as dementia. In short, few consumers want to buy these policies, and most insurers don’t want to sell them.

Twitter: @howard_gleckman

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