How planning for long-term care is burdening middle-class Americans

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• Amna Nawaz:

  Long-term care is already a huge problem in the United States, one that's growing as the baby boom population ages and one with big financial costs.

  William Brangham looks at the impact this is having on middle-class Americans and how they're having to rearrange their lives.

• William Brangham:

  The numbers alone give a very stark sense of what America is facing. Between now and 2030, every single day, about 10,000 Baby Boomers will turn 65.

  By 2050, there will be 85 million Americans 65 and over. Nineteen million of them will be 85 or older. Already, the total cost of long-term care for the elderly is around half-a-trillion dollars every year.

  A new series by KFF Health News and The New York Times called "Dying Broke" looks at the financial and emotional consequences of inadequate long-term care, a circumstance that often leaves middle-class Americans in financial ruin.

  The series profiles people who have had to spend down their life savings to qualify for government help, and it reveals a largely broken private insurance market.

  Jordan Rau of KFF Health News was one of the lead reporters on this series.

  Jordan, thank you so much for being here.

  The series title, "Dying Broke," is so sobering, as are many of the profiles of the stories that you tell. Broadly speaking, can you lay out the problem that you document here?

• Jordan Rau, Senior Correspondent, KFF Health News:

  Thanks for having me.

  What our series looked at was long-term care for the elderly in particular. These are people who need personal aides because they can't do basic activities of daily life, like making meals, getting up, going to the bathrooms, or people that have cognitive impairments like dementia.

  And a lot of people think that Medicare covers this, but that's not the case. It doesn't cover any of that. So, our series looked at this huge gap in support for American families. Some people have taken out long-term care insurance, but, in fact, that's a small amount, and that market is pretty broken and doesn't work.

  And so, as you said, a lot of people end up just being left to their own devices. They spend enormous amounts of their own life savings, and often they have to rely on friends or family. And a lot of the series looked at the family members who have made enormous sacrifices to help their parents.

• William Brangham:

  Yes, one of the many stories — they're all quite profound — but one of the stories you tell is about Gay Glenn and her mother, Betty Ann (sic).

  Can you tell us a little bit about their story?

• Jordan Rau:

  Sure.

  Gay moved from Chicago to Kansas when her mother had dementia and needed to be in a nursing home. And so she moved there to both help her and also to sort out her finances. The nursing home costs over $10,000 a month. And she had to hire a lawyer, as many people have to do, just to figure out how to get her mother to a point where she could qualify for Medicaid.

  So, Medicaid, as we touched on, is the federal-state program that does cover — provide long-term care for people, but you have to have almost no assets in many states and very little income. So you basically have to be destitute.

  And Gay was working on this. At the same time, she had to figure out what to do with her mother's house, and she had to give up a lot of her own career and personal desires to help her mother. And, meanwhile, she was living in — her mother had a very modest rental apartment, and Gay was living there.

  And because of the Medicaid rules, she actually had to be paying rent to her mother, and struggling with all that. And she spent — the mother ended up spending down being on Medicaid. And then, right before she died, they sold the house, and she was off Medicaid.

  So it was really a complete view of just how Byzantine this system is for people and how draining it could be both emotionally and financially.

• William Brangham:

  Byzantine is such a good word for it.

  I mean, if a family finds that they do have to pay out of pocket for this type of care, what's the range of costs they could expect to pay?

• Jordan Rau:

  Well, it depends on what your care choice is.

  So you can try and have aides at home. And that's difficult to find these days because of such a shortage. Many people want to go into assisted living facilities, which are a step less intense than a skilled nursing facility. And those facilities can cost anywhere — $3,000 is the bare minimum almost everywhere.

  And if you have dementia or extensive needs, it can be as high as $15,000 a month. So that's what people are looking for. And the same thing, depending on how much care you need — if you thought you could get 24-hour personal care at home, it can be as expensive. So it could be debilitating for all but the very richest America.

• William Brangham:

  And what are the other kinds of experiences? I know you profiled a whole slew of families, but can you tell us a little bit about some of the other experiences that people had?

• Jordan Rau:

  We had — we wrote about people who went into assisted living facilities. And the way that they were billed, they were often charged very specific moments for every minute that they got care.

  And that was in the original contracts. But as their needs increased and got worse, often, the costs would increase astronomically. So we wrote a lot about them and also about that industry, which is a very profitable one owned by some very large real estate investment trusts, a number of them, not all the facilities.

  And we also looked at whether those places always deliver on the care that they promised that people are paying so lavishly for.

• William Brangham:

  You also detail a few different attempts during the Obama administration and then more recently in the Biden administration to try to address this. And either those efforts either failed to launch or never were passed.

  But you also report how the way that the U.S. cares for its elderly population is so different than our other peer nations in Europe and elsewhere. Can you explain that?

• Jordan Rau:

  Sure.

  So, the United States spends significantly less on long-term care than most other wealthy nations. Now, at the very — the most lavish, the most generous are — is a place like the Netherlands, where they have a publicly funded insurance program, as well as other programs. And you're really taking care of well.

  But other places, other countries have a whole skew of things that we don't have. For instance, in Japan, they assign a care manager to help you navigate this Byzantine system that we talked about. And other places have more generous financial aid, so that you don't have to be totally bankrupt.

  And so that's what — we looked around at other countries and really found the United States fares very poorly in comparison.

• William Brangham:

  All right, the series is called "Dying Broke."

  Jordan Rau of KFF Health News, thank you so much for being here.

• Jordan Rau:

  Thank you so much for having me.