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Estimating the Soaring Price Tag and Other Costs of Dementia Care

April 4, 2013 at 12:00 AM EDT
A new study by the RAND Corporation estimates the cost of dementia care as $41,000 to $56,000 anually per patient. Jeffrey Brown examines the findings and implications with Dr. Ronald Petersen, director of the Mayo Alzheimer's Disease Research Center, and Dr. Richard Hodes, director of the National Institute of Aging.
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JEFFREY BROWN: And now the rising toll from dementia economically, medically, and emotionally.

A study by the RAND Corporation published in this week’s New England Journal of Medicine estimates the cost of caring for Americans with Alzheimer’s and other forms of dementia between $157 billion and $215 billion dollars a year. On a per-person basis, that translates into $41,000 to $56,000 dollars annually.

The costs include direct medical spending, informal family care, lost productivity and long-term care. The latter accounted for 84 percent of total costs. And the problem is growing fast. The costs and number of people with dementia are expected to more than double within 30 years.

We explore the findings and implications with two experts, Dr. Ronald Petersen, the director of the Alzheimer’s Research Center at the Mayo Clinic, and Dr. Richard Hodes, director of the National Institute on Aging, which is part of NIH. His institute financed the new study.

Dr. Petersen, let me start with you.

First, define dementia for us. What does that encompass?

DR. RONALD PETERSEN, Director, Alzheimer’s Research Center, Mayo Clinic: Well, dementia is an umbrella term that involves individuals who have a problem usually with memory and with other thinking skills that is of sufficient severity to affect their daily function.

So that’s dementia. Now, under dementia, we look for a variety of causes of the dementia. And in aging, in 70- and 80-year-old individual Alzheimer’s disease is the most common cause of the dementia.

JEFFREY BROWN: Now, Dr. Hodes, why the very — why the rise — why the very steep rise? Not just a rise, but it’s a very steep rise. Why is that happening?

DR. RICHARD HODES, Director, National Institute on Aging: Well, the principal factor responsible for rise is the increased number of older people who are at risk.

Age is, in effect, the greatest risk factor for Alzheimer’s disease. And due to successes in public health and many other aspects of our environments, we have generated an increase in life expectancy. More people grow to be old and therefore become at risk for Alzheimer’s disease.

JEFFREY BROWN: So the good news is that we live longer, but as we do it, this is part of the bad news?

RICHARD HODES: That’s precisely right. And that’s why there’s such an imperative for us to do something about it, to make sure these projections, which assume that we’re not going to be able to interfere, to slow the progression of Alzheimer’s or prevent it is not the case.

And so we focus a great deal of attention now on research with, I must say, a great deal of optimism as well as hope in finding ways to prevent …

JEFFREY BROWN: OK. But before we get to that, I want to focus a little bit more on the study, Dr. Petersen, because this study looked at the costs. And that’s the kind of news here is the ballooning costs. Where are those costs rising the most?

RONALD PETERSEN: Well, the costs are a combination of direct costs to the medical care system and then informal costs in terms of nursing home care, long-term care, individuals being cared for at home.

And it’s really the latter aspect that really escalates the costs for dementia care over the upcoming years. The medical costs rise as well because people with dementia will cost the system more than people without dementia for other medical illnesses like diabetes, but the real cost increase comes from the care that these individuals require, either at home or in a nursing home environment.

JEFFREY BROWN: And, Dr. Hodes, some of that care especially at home would come from family members. And we have an aging baby boom. It’s part of what you’re talking about with the number, the increased number of aging people.

RICHARD HODES: Exactly.

Although we recognize what direct costs mean, the costs that are consequent to people who stay at home and provide care or the loss of income from those who can no longer be productive is huge. And as you’re suggesting, with the baby boom generation moving on, we are going to have a larger and larger number of older people.

And because families tend to be smaller and demographics are in that direction, there are going to be fewer children, people who are able to sustain the roles that are traditionally those of caregivers, so fewer people to take care of more people and an aging population with Alzheimer’s disease.

JEFFREY BROWN: Now, let me ask you. You started to talk about some of the diagnosis and treatment. Where are we in terms of effective diagnosis and treatment?

RICHARD HODES: Well, the past years have seen really remarkable progress in a number of areas.

For example, we are able through studies of brain imaging and other biomarker studies to detect some of the early processes in Alzheimer’s disease years and even decades before symptoms appear. And this has given hope that it may be possible to test interventions at that early stage before a great deal of damage has been done in the brain and be more effective than we have been to date.

JEFFREY BROWN: Hope, but where are we in the process? Are we just at the hope stage or at early research? Or what do you tell the millions of people who might be facing this?

RICHARD HODES: Research, as it needs to, is over a spectrum, from the most basic.

But it includes the initiation of clinical trials, which for the first time are testing interventions, treatments at this very early stage before symptoms. So in the years to come, we will be learning about whether they are effective or not and have real reason to hope that we may exceed the past disappointments.

JEFFREY BROWN: Dr. Petersen, fill that in a little bit. How do you see that, the situation for research? And what are the particular challenges of research and treatment in something — over something like this?

RONALD PETERSEN: Well, as Dr. Hodes says, the current drugs on the market are what are called systemic drugs. So they treat some of the symptoms of Alzheimer’s disease.

But what we really need to have an impact on this disorder is to have disease-modifying therapies. And there are many of these, 50 to 100 at any given time that are under investigation by a variety of biotechs, pharmaceutical industry. And these trials are ongoing, and it just takes one two of these to hit to actually have an impact on the underlying disease process that will affect the numbers that we have seen in this study from the RAND Corporation.

JEFFREY BROWN: Let me just stay with you for a minute, because I’m imagining that many people watching this have personal connections or concerns about this. What do people look for? I’m going back to the definition of dementia in a sense. What should people look for in themselves and in loved ones when you talk about short-term memory loss, long-term memory loss?

What are the signals?

RONALD PETERSEN: Well, one of the areas of progress in the last few years has been our ability to detect the disease at an earlier and earlier state.

So we now don’t wait for the dementia stage, but we actually identify people at what’s called the mild cognitive impairment stage. This is a stage in which people are forgetful, more forgetful than they used to be and probably more forgetful than they ought to be for their age, but otherwise their cognitive and functional abilities are preserved.

Nevertheless, when we marry these subtle memory impairments with biomarkers, we’re able to detect those individuals who are at risk for developing the disease. So what families can look for is unusual, atypical forgetfulness in their family member.

So if somebody starts forgetting now information that they typically would have remembered without difficulty, a doctor’s appointment, a golf tee time, things of that nature, and they start doing that on a repeated basis, doesn’t mean they have Alzheimer’s disease, doesn’t mean they have mild cognitive impairment, but it may warrant an evaluation by their personal physician to see if there might be other interventions, treatable causes that could account for those symptoms.

JEFFREY BROWN: And, Dr. Hodes, coming back to the cost rise, whether it’s personal cost or government cost, all kinds of institutional costs, what can be done? What can be done as a society? We just talked a little bit about individually.

RICHARD HODES: Well, the United States in the past two years has initiated a national plan, as have some other nations across the world, which is comprehensive. So it calls for action at the research level, but it also looks for ways in which clinical care of those affected and long-term care and support can be initiated.

So we’re in a real era of improved coordination to address what are otherwise, as you have alluded to, just enormous problems.

JEFFREY BROWN: And, Dr. Petersen, a last word from you. What would you say? What can be done at this point?

RONALD PETERSEN: Well, I think the National Alzheimer’s Project Act that led to the first United States plan for Alzheimer’s disease is a major step in that direction.

This plan, which was announced last May, really outlines a blueprint for attacking this disease at the prevention level, at the treatment level, dealing with individuals and families who have the disease and how we are going to measure this as a federal government. So I think we’re going in the right direction, and hopefully we will be able to muster appropriate resources for it.

JEFFREY BROWN: All right, Dr. Ronald Petersen and Dr. Richard Hodes,, thank you both very much.

RICHARD HODES: Thank you very much.

JEFFREY BROWN: And, online, you can learn more about genetic testing and your own risk for Alzheimer’s. That’s on our Health page.