- Pay attention.
- Get ready. It may be you. It may be someone you love.
- Make a plan. And don't forget an advance directive for medical care.
- Waiting for dementia to happen may be too late.
By Michael D. Hurd
Dementia is a chronic disease of aging that robs people of cognitive function, leaving them unable to tend to even the most basic activities of living. But demented persons can live for many years, incurring long-term care bills that can leave surviving spouses impoverished and estates depleted.
In a study published recently in the New England Journal of Medicine, my colleagues and I reported that the total costs of paying for care for seniors with dementia in the United States are expected to more than double by 2040. Medicaid pays these costs for the poor, and some people have private insurance. But for large numbers of elderly Americans, dementia brings not only human suffering but financial ruin as well.
Designing and building a program to protect Americans from the cost of dementia care is a daunting and expensive task, one that probably cannot be accomplished without the help of the federal government. The federal government has broad experience in creating health safety nets and has been expressing concern over the state of the nation’s long-term care systems for some time now. If Congress and the administration need a reason to act, our numbers on costs can provide it.
Currently, some 15 percent of Americans 71 or older have dementia. That is about 3.8 million people; a large number to be sure, but one that will pale by comparison to the 9.1 million expected to be suffering from the disease by 2040.
Our report, The Monetary Costs of Dementia in the United States, estimated that in 2010 Americans spent $109 billion for dementia care purchased in the market place, like nursing home stays. Factoring in the costs of informal care—provided by family members or others outside of institutional settings—the total cost of caring for dementia patients grew to between $159 billion and $215 billion.
As the U.S. population ages in the coming decades, we can expect these costs to continue to escalate. Even if we assume that dementia’s prevalence stays at the current rate and the cost of care per person does not go up, our research showed that by 2040 total costs will have soared to between $379 billion and $511 billion as measured in today’s prices.
We estimated that the average cost per case in 2010 was between $41,000 and $56,000, but this average conceals a great deal of variation from family to family. A large majority of Americans will not face large costs for dementia care. Many patients will have their care covered by Medicaid or private long-term care insurance, or their stays will be short and relatively affordable, or for some other reason they will avoid serious hardship.
Yet, a minority of families will face financially devastating costs because of very long nursing home stays. This calls for an insurance-style solution, one in which the costs of long-term care could be spread across the entire population rather than being concentrated on the unlucky few.
Insurance companies are probably not going to step into the void because the costs associated with these extreme cases are quite uncertain. But the federal government could take it on and, in fact, has crafted similar solutions in the past.
For example, in 2006, Medicare Part D was partly enacted to protect seniors from the high out-of-pocket costs of expensive medicines such as exotic prescription drugs for cancer and other diseases. The program was designed to help all seniors, but especially those with prescription drug bills large enough to impoverish them.
As recently as 2010, the federal government sought to create a long-term care safety net for the aging population. The Community Living Assistance Services and Support Act, the CLASS Act, was enacted as part of President Obama’s health care reform package. The CLASS Act was supposed to do something for seniors by setting up a self-funded and voluntary long-term care insurance program. But, last year, the administration determined that implementing the law would be too expensive and it was abandoned.
It is time for the government in partnership with industry to return to the drawing board to craft a plan that will provide protection for the more than 9 million people who will need care for dementia by 2040. Until it does, too many Americans will be forced to spend themselves into poverty.
A National Caregiver Corps: What the Administration Could Do
This post in March outlines her excellent idea.
Again, go there and read the whole post and thoughtful, supportive comments thread.
What’s a country to do? Launch a Caregiver Corps, a program modeled on similar valuable, successful, and long-lived efforts, such as the Peace Corps, AmeriCorps, VISTA, and Teach for America. Such a program could recruit volunteers from several pools: high school graduates not trained for the workforce; college graduates facing a tough economy and huge undergraduate debt; and older adults, those healthy enough to want to remain in the workforce and contribute to others’ well-being.
Volunteers could sign up for a year or two. In exchange for their service, they could earn tuition credits to cover the cost of college; they could receive some degree of loan forgiveness, to lessen the burden of debt; they could be paid a stipend that acknowledges the value of their work. They could be assigned to community-based organizations that serve older adults, such as Area Agencies on Aging, non-profit health care institutions, social services agencies, and others. While they could offer enthusiasm, compassion, and insight, they could also learn the kinds of skills required to care for an older adult and his or her family. They could learn about the public policies that affect that care. They could acquire medical and nursing skills—the kind of skills family caregivers use routinely in their daily routine. They could be exposed to older people, and bridge the generational gap that splits our country on this demographic. In the end, they might even be inspired to pursue a career that features caring for one another.
That, it seems to me, is something Americans have always done best—and will have to do more, as we all reach our own old age. Developing people who have the skills, resources, and motivation to help us in our self-interest. And it is in theirs, too. Millenials face the highest unemployment of any group in the country, and finding ways to become marketable, employable adults is critical to their own security and future.