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Long-Term Care: The Crisis Everyone Must Face

The system for helping people who can no longer care for themselves is broken and costly

Nearly 70 percent of Americans who reach age 65 will someday require help from others to get through their day. On average women will need help for 3.7 years, and men for 2.2 years.

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Jo Ann Jenkins
Photo by Timothy Greenfield-Sanders

These are truths we don’t like to think about. And that’s perfectly understandable: none of us want to think of ourselves — or the people we love — as being incapable of living independently and functioning fully; nor do we want to contemplate becoming a burden on those we love or, in their absence, reliant on charity, government or hired help for being fed and cared for.

But we do need to consider it, for one important reason: The way America provides long-term care to those who can no longer care for themselves — be it due to illness, injury, dementia or simply the cumulative effects of a long life — is deeply flawed.

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The reality is this: Only a modest percentage of Americans have the wealth needed to afford whatever long-term care needs emerge in their later years. For Americans on the opposite end of the economic spectrum, Medicaid will make sure that those who qualify will have a bed, food, nursing care and the levels of support required to live with at least some level of dignity and comfort.

The challenge is for what Nancy LeaMond, AARP’s chief advocacy officer, astutely describes as “the gigantic middle” — the large majority of Americans whose income and resources make them ineligible for Medicaid or most other safety-net assistance, yet are not nearly wealthy enough to sustain the ongoing costs of aides coming to their home, or for a room in an assisted-living facility or nursing home.

We all know who is filling the gap: unpaid family caregivers. Some 53 million Americans of all ages devote a portion of their day to feeding, driving, cleaning, paying bills and making sure the medicine gets taken by a loved one not able to do these tasks on their own. You can say this is as it should be: Family and close friends are always best for taking the lead on caring for someone in need. And that care should be given at home whenever possible, rather than in an institutional setting. We at AARP completely agree.

But as you will read, the toll on America’s caregivers is often great — too great. The support systems needed to assist them — whether from employers, the health care industry or government — often come up far short. And while long-term care insurance policies are available for precisely this need, they are often expensive, complicated and beyond the reach of those who could benefit from them. So very few people buy them.

In this report, the editors of the AARP Bulletin set out to accurately describe the state of long-term care in America, with a particular focus on caregiving at home (dealing with nursing home challenges and shortcomings is a whole other discussion). They spoke to a wide range of experts on why these flaws exist and how they can be fixed. They deliver a wide range of advice and support to help you not only to think about this vital issue, but to be the best caregiver you can be when the time comes.

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Improving America’s long-term care system is one of AARP’s top goals. As you will see, we are working hard on many fronts to adjust attitudes about caregiving, and to change laws, influence employers and provide family caregivers with the resources, information and support they so desperately need. And they deserve it: if you are looking for heroes in America, you need only look at the legions of unpaid caregivers who sacrifice so much, most every day. To you, we offer our deepest thanks and our determined commitment for positive change.

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