The Challenge of Long-Term Care for Caregivers and a Federal Commission

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June 4, 2013; The Willits News (via the Associated Press)

HopeHealth, a nonprofit formerly known as Hospice & Palliative Care of Cape Cod, provides assistance to home health caregivers like Gail McCarthy as she takes care of her 76-year-old husband, who suffers from Alzheimer’s. The nonprofit’s Hope at Home program helps caregivers through at-home visits with psychologists, who provide caregivers with a variety of kinds of support, but what seems key is simply counseling caregivers themselves so that they can survive the stress and exhaustion of what is often a 24/7 challenge.

A study by the RAND Corporation said that 4.1 million Americans suffer from Alzheimer’s or other forms of dementia. According to the study, as reported in the Willits News, “Alzheimer’s is the most expensive illness in the country, topping cancer and heart disease and costing families and society $157 billion to $215 billion a year.” One of the costs is the lost wages for unpaid caregivers, which amount to between $41,000 and $56,000 per year per patient.

George Vradenburg of USAgainstAlzheimers reports that caregivers of people with Alzheimers have shorter lifespans than other caregivers. “It’s just exhausting,” according to Vradenburg, to deal with the challenges posed by patients with Alzheimer’s.

Home healthcare is one of the elements of long-term care to be examined by the Commission on Long-Term Care that was created as part of the fiscal cliff deal in January, and Vradenberg is a member, but he might find that being part of a presidential commission is exhausting and frustrating in its own right. Readers might recall that the fiscal cliff deal eliminated a long-term care provision of the Affordable Care Act—the CLASS Act—with the explanation from both sides of the aisle that it simply wasn’t workable, thus the creation of the Commission.

However, in mid-April, commissioners reported having had informal conversations but no official meetings, to the point of not even having chosen a chairperson for the commission. Politico called it “slow-walking toward deadline.” In its wisdom, Congress gave the commission a six-month lifespan from the time commissioners were appointed (the White House only made its last appointments in mid-March) and no budget (in place of its own nonexistent staff, the commission will have access to staff detailed from Senator Jay Rockefeller’s office, since Rockefeller was a prime mover behind the creation of the commission). According to Howard Gleckman writing for Forbes, the commission may have its first meeting later in June.

That hardly generates much confidence in the nation’s progress on this critical issue. The challenges of long-term care at home are matched by the challenges of paying for care at facilities, such as assisted living facilities or nursing homes. Last month, the New York Times reported on a 2013 study by the Richmond, Virginia-based insurance provider, Genworth Financial, that put the national median daily cost of a private room in a nursing home at $230 a day, or $6,900 a month, and a shared room at $213 a day or $6,390 a month. For an assisted-living facility, the median monthly cost is $3,450. Costs of long-term care facilities are rising rapidly. In 2008, the median annual cost of a private nursing home room was $76,525, but in 2013, it climbed to $83,950, an increase of almost 25 percent. For assisted-living facility care, costs rose 4.55 percent between 2012 and 2013 alone.

To take this back to NPQ Newswires from earlier this week, one of the significant pieces of coverage in Medicaid is for long-term care that would otherwise be unbelievably unaffordable for lower-income households (thus the desire of some people to “spend down” to become income-eligible for Medicaid-covered long-term care). That’s one more reason why households with incomes up to 138 percent of the federal poverty level deserve expanded Medicaid coverage.

So, Gail McCarthy, whose husband has since been put into a nursing home after a stroke, and others like her will have to wait for the no-budget, no-staff commission to generate its recommendations for new regime of providing and paying for long term care. For the families facing long-term medical care challenges, this is no way to make public policy.—Rick Cohen 

  • Owen L

    The median daily cost of assisted living is $3,450.???

  • rick cohen

    whoops! monthly!

  • Matt McCann

    Too many people want to avoid the issue of Long Term Care planning, at least until it actually happens. Many Americans need to plan for Long Term Care just like they plan for retirement. For many, affordable Long Term Care insurance many be an answer. You must health qualify and premiums are based on your health and age at the time someone gets a policy.

    Most people start looking at learning more from 45 to 65 years-of-age. If you have assets to protect and think you should learn more about the physical, emotional and financial burdens that long term care can place on family and friends then someone should be pro-active.

    A few good websites to learn more: and I would recommend you learn from a specialist who works with a number of top companies, not just one or two. Policy design is very important since some people buy too much coverage or way too little coverage.

    Long Term Care insurance will pay for care in your home, as well as adult daycare, assisted living and nursing home care. Most long term health care services are custodial in nature, which means help with normal activities of daily living. This is the type of care NOT paid for by health insurance or Medicare.