We Need to do a Better Job Caring for 40 Million Family Caregivers

Family caregivers are invisible.

Those children, spouses, or other relatives who provide personal assistance to loved ones with physical or cognitive limitations are often taken for granted or even ignored. But without them, our system of long-term supports and services would collapse. Frail elders and younger people with disabilities would get sicker. Hospitalizations would increase. Medicare and Medicaid costs would explode.

There are at least 40 million family members caring for adults in the US. According to a new study by the AARP Public Policy Institute, they provided 37 billion hours of assistance in 2013, or an average of 18 hours a week. And AARP figures the economic value of that care was $470 billion. To put it another way: that’s roughly what it would cost to replace that family assistance with paid services.

A New Way To Get Hospice Services Without Giving Up Aggressive Treatment

A new Medicare pilot program will make it easier for patients to access some hospice benefits without giving up standard medical treatment for a terminal disease. It is an important step towards building a health system that fully integrates social, spiritual, and palliative care such as pain management with health care. But it doesn’t get all the way there.

Today, fewer than half of all Medicare recipients ever enroll in hospice, and those that do often wait until just a few days before they die. While we are still trying to understand why, one reason may be that people feel they are being forced to give up medical treatment in exchange for hospice services. This pilot could begin to change that.

What Are the Chances You’ll Need Long-Term Care And How Much Will It Cost?

What are the odds you’ll need assistance to help with personal activities such as bathing or dressing before you die? For those about to turn 65, it’s about 50/50, according to an important new study. On average, you can expect to need this high level of care for about two years. But one-in-five Americans will need such assistance for less than one year while about one in seven will need extensive help with daily living for five years or more.

A New Vision for Long-Term Care

Today, America’s vision of long-term care is limited and grim. Supports and services for frail elders or younger people with disabilities are delivered in a fragmented, disorganized way that puts recipients of care at risk for serious harm or even death and likely wastes billions of dollars. Indeed, if the goal of supports and services is to provide the best possible quality of life for those who need personal assistance, we are doing almost everything wrong.

How Liberals and Conservatives Are Working Together To Improve Long-Term Care

The number of people needing long-term supports and services is likely to double by mid-century, and there is broad agreement across the political spectrum that our system for delivering and financing that care is, frankly, terrible. But for years, these problems seemed intractable. How could we break the political gridlock that has infected this issue, along with so many others?

In 2012, a small group of policy experts formed what we called The Long-Term Care Financing Collaborative #LTCollaborative to find a way. And today, we are releasing our first report: It describes an integrated model of delivering care that aims to improve the quality of life of those with complex chronic conditions and better support family members and communities that assist them.

What Many 65-Year Olds Don’t Know About Medicare

You know the old mantra: When you turn 65 you are eligible for Medicare and Social Security. But matters are no longer that simple. And because growing numbers of older Americans are not taking Social Security benefits until past 65, they may be making poor Medicare choices or missing out on some benefits entirely–simply because the government is not telling them they need to actively enroll for health coverage.

If you are already collecting Social Security when you turn 65, getting Medicare is relatively simple.  When you signed up for your Social Security annuity payments (as early as age 62), you also did the paperwork to start getting Medicare at 65.

Steps on the Path to Public/Private Long-Term Care Financing

Yesterday, the CEO of the nation’s largest long-term care insurance company, Genworth, acknowledged the US needs a new model of LTC insurance that includes some government role.  Tom  McInerney estimated that between half and two-thirds of Americans simply cannot afford to buy insurance in the traditional private market.  A 50-something can expect to pay an average of $2,500-$3,000-a-year for a typical policy ($150-a-day for three years, with inflation protection).

And that’s not the only problem. It is impossible to buy private insurance to protect against truly catastrophic long-term care risk of more than 10 years and difficult to buy coverage for more than five years. And perhaps as many as one-quarter of those who would like to buy can’t: They cannot pass the medical underwriting necessary to qualify for insurance.

A New Way For Family Caregivers To Get Lawmakers’ Attention

Here is a political mystery: At least 44 million Americans are caring for aging parents or other relatives and friends. That’s more than one of every six adults in the US—an enormous voting block. Yet, their interests are largely ignored both in Washington and in state capitals.

Now, the Altarum Institute, a non-partisan, Washington-based research organization, has come up with a new way to get caregiver issues on the political radar. The initiative, called the Family Caregiver Platform Project , is aimed at getting families who help their loved ones with personal care involved in writing the policy platforms of the political parties.

Big Strides in Cancer Treatment Will Increase Long-Term Care Needs

Cancer researchers are closer than ever to achieving their long-held dream of turning the disease from a death sentence to a chronic illness. This would be a remarkable scientific achievement. But while people may soon routinely live decades with their cancer in remission or even cured, they will not become immortal. Most will eventually suffer from some other debilitating condition and require a period of long-term supports and services.

A New Snapshot of America’s 44 Million Family Caregivers: Who They Are and What They Do

A landmark new study paints a dramatic picture of family caregivers: Nearly 44 million adults in the US are providing personal assistance for family members with disabilities or other care needs. That’s more than one out of every six adults. More than 34 million care for frail elders and nearly 4 million help children with disabilities. About 6.5 million care for both.

The typical family caregiver is a 49-year-old woman who is assisting a parent or in-law and working at a paid job. She reports spending an average of about 24 hours-a-week providing personal assistance such as bathing or dressing or helping with activities such as shopping or rides. Almost six in 10 say they perform nursing or other complex care tasks, such as giving oral medicines or injections, wound care, or operating medical equipment.