The high cost -- and stress -- of caring for the elderly

Man walks 6 miles to visit wife

More than half of recently surveyed affluent Americans age 50-plus said they would rather die than spend time in a nursing home. 

Instead, 71 percent of respondents to a recent study from Nationwide Retirement Institute said they hope a loved one will take care of them and that they can compensate that person financially for their efforts. "It's clear respondents do want the care of a loved one, but they don't want to be a burden on spouses or adult children," said Holly Snyder, vice president of Nationwide's life insurance business.

But the reality is caregiving is often stressful, both emotionally and financially. The Nationwide study, released Wednesday, also surveyed adults 50 and older who had been or are caregivers. "We found that only 20 percent of caregivers received some kind of financial support, and more than half of them spend their own money -- on average about $4,000."

A separate study by the National Alliance for Caregiving and AARP found that 16 percent of women caregivers and 6 percent of men take a less demanding job to care for a loved one. Twelve percent of women and 3 percent of men quit work altogether. That can lead to a loss of $304,000 in wages and benefits on average over a lifetime, according to AARP research.

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Insurance doesn't offer much relief. Steep premium increases and troubles in the industry have put long-term care insurance, which covers the cost of nursing homes, assisted-living facilities and home health care, out of reach for many people. Only 27 percent of Nationwide's survey respondents have such coverage for themselves or someone else.

In addition, Medicare doesn't cover most long-term care costs, which often comes as a surprise to people when they enroll. That said, some limited relief may be on the horizon for people covered by Medicare Advantage policies. Private insurers sell Medicare Advantage plans as an alternative to traditional Medicare, often with extras such as vision and dental coverage.

The list of extras Medicare Advantage insurers can offer starting in 2019 has significantly increased, thanks to an April ruling from the Centers for Medicare and Medicaid Services that expands the definition of health-related benefits.

The new rule opens the door to coverage of adult day-care services, home-based palliative care, in-home support services, caregiver support, non-opioid pain management, memory fitness services, home and bathroom safety devices and modifications, transportation to and from doctor visits, and over-the-counter health items, according to a list provided in a CMS memo.

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Great as the new coverage sounds, it isn't required. Insurers will offer these extras only if they choose to. Firms are just now filing their 2019 plans with regulators, so it remains to be seen how many Medicare Advantage policies will expand benefits.

And even for those that do, it's important to remember that not all policyholders will necessarily be eligible for all of the benefits,

Other relief may come from your state. Caregivers may want to check with their Area Agency on Aging to determine if their state has passed one of the many new laws that offer a range of breaks, including tax credits for elder care and allowing sick leave to be used to care for an elderly person, according to AARP. More such laws are in the pipeline.

Hawaii, for instance, provides $70 a day for services such as respite care or adult day care for some working people who care for an elderly loved one. And several states have passed laws requiring employers to allow paid family leave to be used for caring for an elderly relative.

No matter what kind of insurance you have or what state you live in, there's one thing everyone can do right now, said Snyder. Start talking. 

She was surprised to find from the Nationwide survey that 39 percent of people have not discussed long-term care planning with anyone, including a spouse, partner, children or financial adviser. "I hope that changes," Snyder said. "The solution starts around these conversations."