Alzheimer's Toll Reaches 5 Million

A new report released by the Alzheimer’s Association brings some bad news: an estimated 5.1 million Americans currently have Alzheimer’s disease (“Alzheimer’s Disease Facts and Figures 2007,” available at http://www.alz.org/national/documents/Report_2007FactsAndFigures.pdf.) And the problem is likely to get worse. By 2050, the number of people over age 65 with Alzheimer’s will have more than doubled, rising to at least 11 million. In a press release put out by the Alzheimer’s Association, the organization’s president issued a call to action: “We must make the fight against Alzheimer’s a national priority before it’s too late. The absence of effective disease modifying drugs, coupled with an aging population, make Alzheimer’s the health care crisis of the 21st century” (Alzheimer’s Association News Release, 3/20/07, available at www.alz.org/media_7362.asp). He’s right: we need to turn our attention to this devastating disease, both by looking for treatments and by finding better ways to care for afflicted individuals. But there’s something else we can do now which would improve the quality of life for those with Alzheimer’s—and simultaneously decrease the cost of their care. The media’s response to the Alzheimer’s Association report is to clamor for more research—which is a fine idea as far as it goes, but it fails to acknowledge that no progressive neurologic disease has yet been cured, not Parkinson’s disease, not stroke, not multiple sclerosis. What we can do today is to provide more hospice care and less intensive hospital care to people with Alzheimer’s disease.

The report presents a striking graph showing that the average amount spent by Medicare on people with dementia (both Alzheimer’s disease and other types) was almost three times what Medicare spent on other patients: $13,207/year compared to $4,454/year. A small fraction of the total is spent on home health aides, but an enormous proportion is spent on hospital care and on nursing home care: the cost of hospital care for the patient with dementia is 3.2 times higher for a patient with dementia than for other Medicare patients ($7,074/person compared to $2,204/person) and the cost of skilled nursing home care is more than ten times higher for a patient with dementia ($2,144/person compared to $210/person), where skilled nursing home care translates into care in a subacute or rehab unit after hospitalization. Medicare pays only for this kind of “skilled nursing facility,” not for custodial long-term care.

By contrast, only a very small percentage of people who die of advanced dementia receive hospice care. One recent study found that a mere 5.7% of nursing home residents and 10.7% of people with dementia living at home were referred to hospice even when they were dying of their dementia (SL Mitchell, JN Morris, PS Park and BE Fries, “Terminal Care for Persons with Advanced Dementia in the Nursing Home and Home Care Settings,” Journal of Palliative Medicine (2004); 7:808-16.

Taken together, these observations about the medical care we give people with dementia paint a disturbing picture. Instead of proving comfort care to people who are at the end of their lives, who no longer can get dressed or go to the bathroom by themselves, and who can no longer carry on a conversation, we are sending them to the hospital and subjecting them to invasive and costly tests and treatments that they cannot understand. If they survive the hospitalization, we send them to a rehabilitation facility because they are often too debilitated after their acute hospital stay to return to the same nursing home or home environment from which they came.

Most older people, when asked, say that if they developed Alzheimer’s disease they would not want invasive and painful medical care intended to prolong their lives, treatment that would simply allow them to develop even more advanced dementia. But once they lose the ability to make decisions for themselves, we routinely subject them to precisely the kind of medical treatment that most of them would not want.

We can do something about this travesty today. We can talk to healthy older people about their preferences for care and document their wishes in an advance directive. It’s not unreasonable to ask patients, well before they show any signs of cognitive impairment, to think about the general approach to medical care they would favor if they turn out to be among the 42% of people over 85 who will develop dementia. We can also establish standards for what constitutes appropriate care for people with dementia, standards that would determine just what physicians recommend to patients and families. Searching for a cure is a noble undertaking and we should pursue it wholeheartedly, but as long as millions of Americans continue to contract Alzheimer’s disease, we have a responsibility to provide humane and appropriate medical care for all who suffer from this tragic condition.

Recent Interview

An interview from Ruth Dempsey at Aging Horizons:

Ruth Dempsey: In The Denial of Aging, you argue: "Despite my vitamin and exercise regimens, I am likely one day to find myself sick or frail. Better I come to terms with this reality now." Why is this message important?

Muriel Gillick: I worry that if we deny the realities of old age we will squander our resources on ineffective but costly screening tests. We will waste our resources on ultimately futile but expensive treatment near the end of life, leaving us insufficient funds for a beneficial cure.

I am concerned that if we assume Alzheimer's disease will be cured and disability abolished in the near future, we will have no incentive to develop long term care facilities that focus on enabling residents to lead satisfying lives despite their disabilities.

And I'm afraid that if we assume diet and exercise will prevent chronic disease, we will fail to look for better models of care for chronic disease. We will not bother to overhaul our medical system so that it provides incentives to physicians and hospitals to improve the care of chronic illness.

RD: You emphasize evidence-based medicine. What is it, and how is it likely to affect me?

MG: Evidenced-based medicine is an approach to medical care that rests on scientific studies. Instead of simply assuming that tests or treatments will produce the desired result, we don't prescribe those interventions unless we have sound evidence that they work.

If your physician adheres to these precepts, he or she will not prescribe something for you without good data indicating that it makes sense. This means that you will not get treatments you may read about in the popular press that sound like a good idea but have not been tested. It means you will not be subjected to treatments that are useless but have worrisome side effects. It also means that what seems desirable treatment one year may turn out not to be advisable the following year when there is new data.

RD: You recommend a brand of intermediate care for frail older people. Can you give me an example? Why is this type of care important?

MG: Many people - including physicians - tend to think that there are only two approaches to medical care: maximally aggressive treatment (whatever devices, drugs, or operations are relevant for your condition) or hospice type care, care that is focused exclusively on comfort. In fact, there are often options in between these two extremes.

A frail older person with a heart attack might be perfectly willing to have a cardiac stent placed to keep his narrowed coronary artery open (a procedure done while you are awake and requiring typically a day or two in the hospital), but not willing to undergo open heart surgery, a riskier procedure with a longer recovery period.

It's important to consider such options so as to avoid over-treatment, which often results in side effects and complications that you might strenuously wish to avoid, and also to avoid under-treatment - being deprived of potentially life-prolonging or quality of life enhancing therapy.

RD: Making end-of-life decisions can be complicated for both patient and family. Can you give me some guidelines?

MG: It's critical to have open conversations with your family members and your physician about your overall goals. You may not know whether or in what circumstances you might want to have cardiopulmonary resuscitation or be on a ventilator. But you may be able to talk about what is important to you - is it living as long as possible, no matter what? Is it retaining whatever independence you have in areas such as walking, hearing, and seeing? Or is it just being as comfortable as possible?

Explain your views to your family and your physician, who can then help translate these goals into practice. Also choose one person to speak for you - to be your surrogate or health care proxy - in case you are too sick to speak for yourself.

RD: In the book, Ruth Schatz, 93, is suffering from dementia. She is also stuck with a high-powered defibrillator that keeps going off. What can be done?

MG: Whenever an older person develops a new medical problem, it's important to think about how to address that problem in the context of the whole person, not just his heart or his kidney or whatever is failing right now. A person who develops heart problems and has progressive dementia may warrant a very different approach from a vigorous older person with the same heart problem. Typically primary care physicians or geriatricians are better at dealing with this sort of issue than specialists.

It's also important to review the overall situation periodically - drugs or devices that make sense for someone at a particular point in time may no longer make sense later. They should be discontinued or turned off if they are no longer serving the original purpose.

RD: You consider community essential for a good old age. Will you please elaborate?

MG: One of the greatest challenges in dealing with older individuals is to help them find meaning in their lives. Typically they are finished with child-rearing and have retired from their occupations. They may simply feel superannuated.

The ways most people find meaning are through participation in something larger than themselves, in their community. They need to find ways to give to that community, whether it's through tutoring elementary school children or providing advice to out-of-work executives or teaching English as a foreign language to new immigrants.

But for older people to find such opportunities, the community needs to make them available. Transportation for older individuals will have to be provided. Part-time work needs to be acceptable. Only if society recognizes its responsibility towards the elderly will the elderly be able to give to the surrounding society.

RD: You say, "A good old age is within our grasp. But we must reach in the right direction." Can you please explain?

MG: There are three or four things to keep in mind.

First, we need to change our personal behaviour. I said we shouldn't put our faith in exercise, but that doesn't mean we shouldn't do what little we can to stay limber. Exercise markedly decreases risk of heart disease, the leading cause of death in people over 65. Exercise can help prevent obesity, increasingly recognized as epidemic. And people who stay fit tend to stay self-sufficient. They can carry groceries and go up the stairs.

We should keep moving but probably shouldn't make so many geographic moves.

Cultivating relationships with family and friends mitigates against loneliness. It also has effects on health - social contacts influence the rate of recovery from a heart attack, a stroke, or a hip fracture. Finally, social engagement can help delay the onset of dementia and minimize its impact.

Second, in the realm of preventive medicine, we need to stop obsessing about things that no longer matter, resisting the impulse to request Pap smears and prostate specific antigen tests, and start paying attention to new areas that do matter. Falling and breaking a hip presents a far greater threat to independence and happiness at age 85 than does cervical cancer. We also need to consider intermediate care not just aggressive care or hospice.

Also, it's important to give people tools to help them change their behaviour. For example, we need to have some kind of continuing health education for older people. We may need prolific peddling points to encourage exercise - something like frequent flyer miles. We could have password protected sign-in sites with exercise bikes. At approved weigh-in centres, we could get points for achieving exercise and weight goals that could be used toward purchase of medications or other medical services not covered by insurance.

Third, institutional changes are also imperative. Nursing homes need to be more resident-centered. There are models of care that let residents decide when they will get up, what they will do.

As well, assisted-living facilities have to allow for negotiated risk. Diabetics may not want tight control of their blood sugar if it means forgoing the few pleasures in their lives. The facility shouldn't be penalized for serving sweets, provided residents have a choice and make an informed decision. A wobbly person may not want to use a walker, even if she risks falling. Again, the facility shouldn't be penalized for falls, provided residents are offered physical therapy, encouraged to use walkers, and they declined based on understanding of risks and benefits.

In the Grey Zone

When I went to medical school, the condition “mild cognitive impairment” had not been recognized. Patients either had dementia (which was often referred to as “senility” or “senile dementia” or “senile dementia of the Alzheimer’s type”) or they didn’t. Now we believe that dementia may be twenty years in the making. This makes a lot of sense for Alzheimer’s disease, the most common form of dementia, because Alzheimer’s is due to the abnormal deposition of a normally occurring protein called beta amyloid. If too much beta amyloid accumulates in the brain—and it tends to build up in the part of the brain particularly involved in memory, the hippocampus—the result is amyloid plaques. These plaques are something like dental plaque, but unfortunately there is no easy way to get rid of them. They can’t just be scraped off. In fact, Alzheimer’s disease may result from an imbalance between the deposition of amyloid and its removal. It takes a good long time for enough plaque to build up to result in the problems with memory, thinking, and behavior that constitute Alzheimer’s disease. So it’s not surprising that somewhere along the line, as the process develops, a person might have enough beta amyloid to experience mild memory loss without having enough amyloid to meet the criteria for dementia.

Mild cognitive impairment, or MCI, has been a hot topic of research. Clinicians have tried to define just exactly what MCI is. They have sought to distinguish it from “age-associated memory impairment,” the very slight degree of memory loss that is typically found when comparing old people (especially very old people) to young adults. MCI is now defined as a condition in which patients or families report memory problems which are not sufficient to interferer with daily life. (See R. Petersen, J. Stevens, M. Ganguli et al, “Practice Parameter: Early Detection of Dementia: Mild Cognitive Impairment,” Neurology 2001; 56: 1133.)

Researchers have also tried to figure out whether everyone with MCI is destined to develop dementia. Studies have varied in their findings, but the rate of progression to dementia is somewhere between 6 and 25% per year. Finally, investigators have studied whether any interventions can prevent the development of full blown dementia in people with MCI. One study evaluated the use of Vitamin E and of Donepezil (Aricept), two drugs that are used in the treatment of Alzheimer’s. Unfortunately, Vitamin E had no effect. Donepezil was associated with a lower rate of progression to Alzheimer’s in the first year of treatment, but not subsequently. (See R. Petersen, R. Thomas, M. Grundman et al: “Vitamin E and Donepezil for the Treatment of Mild Cognitive Impairment,” New England Journal of Medicine 2005; 352: 2379.)

How should physicians approach patients with MCI? What should families do? What should patients do if they are given this intimidating diagnosis? Right now there is no reliable way to predict who will go on to develop dementia. Magnetic Resonance Imaging (MRI) is a promising technology: patients with degeneration in the hippocampus are at risk of progression to Alzheimer’s. So too are patients with abnormal metabolism in the temporal lobe as measured on a Positron Emission Tomography (PET) scan. But these tests cannot determine with certainty who will progress and who will not. (See K. Blennow, M. de Leon, H. Zetterberg, “Alzheimer’s Disease,” The Lancet 2006; 368: 387.) Until we have treatment that will effectively prevent MCI from progressing, there is little point in trying to predict who is going to get the disease. Patients with MCI should be evaluated regularly, however, to see if they have developed Alzheimer’s or another form of dementia. At that point, treatment may be beneficial. In the mean time, patients with MCI should be sure to appoint a health care proxy to make decisions for them if they lose the capacity to make decisions themselves. And they should take the opportunity to tell their proxy what matters to them—just in case.

Alzheimer’s Centennial

On November 6, 1906, Alois Alzheimer presented a paper to his medical colleagues describing a patient, Auguste D, who had a progressive, ultimately fatal form of dementia. He studied her brain tissue under the microscope after she died, describing the tangles and plaques that would become the hallmarks of the disease. Her illness, which he distinguished from the “senility” found so often in elderly patients—Auguste D was only 51—would become known as Alzheimer’s disease.

It would take more than half a century until we recognized that “senile dementia” and “Alzheimer’s disease” were one and the same. Most people who develop this dread condition, marked by cognitive changes (memory loss being the earliest and most striking example), behavioral changes (agitation and often paranoia), and ultimately, total dependence on others for the most basic functions of daily life, are in their seventies or eighties. Less commonly, they develop the same symptoms at a much younger age. Often these individuals have a hereditary form of the disease—but it is fundamentally exactly the same disorder.

How much progress have we made in understanding and treating Alzheimer’s disease in the past 100 years? An article in the British periodical, The Lancet, (Konrad Maurer, Ian McKeith, Jeffrey Cummings et al, “Has the Management of Alzheimer’s Disease Changed Over the Past 100 Years?” Lancet 2006; 368: 1619-1621) argues that many of the basic approaches to care remain unchanged, though the number of available medications has increased enormously. The authors indicate that already a century ago, Alzheimer understood that a key element of care was the environment. Patients with dementia need calm and compassionate caregivers and an atmosphere that is distracting but not excessively stimulating.

But what about all those medications we use today—Donezpezil (Aricept) and Memantine (Namenda) and drugs such as Risperidone (Risperdal) and Olanzapine (Zyprexa)? Just how much better are they than the small doses of alcohol and sedatives such as chloral hydrate and paraldehyde that were used in Alois Alzheimer’s day? Today’s pharmacologic agents may have fewer side effects than their predecessors, certainly an important consideration, but they are far from benign—the antipsychotics, for example, have been associated with an increased risk of stroke.

What concerns me is that the effectiveness of the medications we routinely and liberally use in Alzheimer’s disease is regrettably only modest. The cholinesterase inhibitors (such as Aricept) result in a statistically significant improvement in measures of global function—but it’s far from clear that they make a real difference in the daily lives of most patients and their caregivers. A review of all studies on these drugs by the British National Institute for Health and Clinical Excellence concluded the evidence for real benefit was so questionable that they should not be considered the standard of care (see my blog posting, “Americans, Alzheimer’s, and Aricept..”) The antipsychotic drug that are commonly used for agitation, restlessness, paranoia and other major behavioral features of Alzheimer’s have just been examined at in the most sophisticated and careful study to date. Unfortunately, the conclusion of this study is that these medicines are usually no more effective than placebo (See Lois Schneider, Pierre Tariot, Karen Dagerman et al, “Effectiveness of Atypical Antipsychotic Drugs in Patients with Alzheimer’s Disease,” New England Journal of Medicine 2006; 355:1525-1538). And the glutamatergic antagonists (ie Memantine) have been shown to slow the progression of disease in patients whose dementia is already advanced—an effect which some might regard as tantamount to leaving patients suspended in a condition worse than death. (See Barry Reisenberg, Rachelle Doody, Albrecht Stoffler et al, “Memantine in Moderate-to-Severe Alzheimer’s Disease,” New England Journal of Medicine 2003; 343:1333-41).

Scientists have made remarkable strides in understanding the genetic and biochemical underpinnings of Alzheimer’s disease. Several promising avenues of research into treatment are being vigorously pursued—a vaccine, tested in mice, has led to dramatic regression of plaques in the brain. But bran diseases are extraordinarily complicated and those affecting thinking are particularly recalcitrant to treatment. Perhaps we should spend as much effort on designing more humane environments in which to care for people with dementia as we do searching for a pharmacologic fix.

A Time to Be Born, A Time to Die

On September 6, the Food and Drug Administration (FDA) approved the use of the artificial heart. The AbioCor heart, the device that was approved, has been used in 14 people. Their experience formed the basis of the FDA decision. All 14 had very advanced heart failure at the time of the surgery, so advanced they were not expected to live for more than a month. They could scarcely walk without getting short of breath and they were not candidates for a heart transplant (typically because of their age or other medical conditions). All 14 have died: 2 died during surgery, and 6 of the survivors suffered strokes. They lived an average of 5.2 months with the surgery, including one subject who lived for 17 months. However, only one was discharged home. Ten left the hospital only with short passes, and 1 moved to a hotel near the hospital. The cost of the device has been set at $250,000 by AbioMed, its manufacturer. The hospital charge for the insertion (not counting the cost of the prolonged hospital stays that have been required to date) is estimated at $100,000.

A little over a year ago, the scientific advisory panel to the FDA recommended against approving the device. FDA approval is contingent on a device being “safe and effective.” The artificial heart was deemed “effective,” since it prolonged life from an expected one month to an average of 5.2 months. The advisory panel, by a 7:6 vote, concluded they could not consider a device which led to major strokes in 50% of the recipients and which kept almost all patients hospitalized until their deaths “safe.” Usually, the FDA heeds the recommendation of its advisory panel. In this instance, without any engineering modifications since the advisory panel met in June, 2005, the FDA nonetheless approved the device. What happened?

The story of just who put pressure on whom to win approval of the device has yet to be researched. Interestingly, back in 1976, the director of the National Heart, Lung and Blood Institute tried to pull its contracts with 4 firms for designing and manufacturing the total artificial heart on the grounds that the technology was too flawed and too expensive. He didn’t expect anticipate the response from 2 powerful senators, Orrin Hatch of Utah and Edward Kennedy of Massachusetts, in whose states several of the firms were based. At their insistence, the contracts were reinstated—including the one to Abiomed, the Danvers, Massachusetts firm that produces today’s AbioCor heart. (For further insights on the history of the AbioCor heart, see the article by Renee Fox and Judith Swazey, “He Knows That Machine is His Mortality: Old and New Social and Cultural Patterns in the Clinical Trial of the AbioCor Artificial Heart,” Perspectives in Biology and Medicine 2004; 47:74-93).

What we know today is that the FDA decided not to grant full approval, but to allow use of the device under its “humanitarian exception” provision.” The standard in these cases is that the device be “safe and probably beneficial” and that the condition for which it is used afflicts fewer than 4000 individuals per year. The FDA, to be fair, has a tough job. It has to weigh the risks and the benefits of a new device. It has no clear calculus for doing this. In clinical practice, we typically offer treatments that “work” and expect patients to figure out, using their own personal values, whether the potential advantages of the treatment outweigh the disadvantages. When the treatment (whether drug or device) simply doesn’t do what it’s supposed to do, the job is fairly easy. When it does what it’s alleged to do, but there’s a safer alternative, the job of deciding on approval is also fairly straightforward. In the case of the artificial heart, it seems to “work,” if we define working as, on average, prolonging life. But the cost to the individual is enormous. Tom Christenson, the one subject who lived for 18 months after the implant, developed a fever to 107, kidney and liver failure and respiratory problems. He actually made it home for a few months, only to be readmitted to the hospital at which point the decision was made to disconnect the power source of the device and allow him to die.

Just because the FDA has approved use of the device doesn’t mean that it will automatically be paid for by the major health insurers. Medicare, for instance, has a process for making coverage decisions for controversial technologies such as the artificial heart. Medicare is required by law to make available to enrollees in the Medicare program any medical intervention that is “reasonable and necessary,” a phrase even less well-defined than the FDA’s “safe and effective.” Officially, Medicare is not supposed to take cost into consideration. This has become increasingly problematic as more and more expensive and only marginally useful procedures have entered medical practice, such as lung volume reduction surgery (an operation in which parts of the lung are cut out of patients with emphysema), the implantable defibrillator (a device that automatically shocks the heart if it detects a potentially dangerous heart rhythm), and the left ventricular assist device (another device used for patients suffering from very advanced heart failure, one that boosts the function of the heart rather than replacing the heart entirely). As a result, the Centers for Medicare and Medicaid Services has begun setting the price it will pay for certain procedures far below their actual cost—the left ventricular assist device was initially reimbursed at $70,000 even though the device alone cost $65,000 and the surgery to insert it typically cost over $200,000. With the AbioCor Heart, if Medicare does agree to cover the device, it will no doubt employ a similar strategy: it will choose to permit use of the device but pay something like $150,000—roughly what it pays for a heart transplant but less than half the cost of the new procedure—a strategy that will no doubt put a crimp on actual use of the procedure. (See my article, “Medicare Coverage for Technological Intervention: Time for New Criteria? Published in the New England Journal of Medicine 2004; 350: 199-203).

Replacing the human heart has been the American dream since the National Institutes of Health established an Artificial Heart Program in 1965. Originally granted $600,000 and 5 years to achieve its goal, the project has continued for over 40 years. Along the way, it has been critically reviewed multiple times, sometimes with the recommendation that the work continue only if the technology is expected to be cost-effective, or a good “value for the money.” At $350,000 to implant the AbioCor heart—and this figure does not take into account the full cost of hospitalization for these patients (all but 2 of the initial 14 cases spent the rest of their lives in the hospital)—it is surely not a good value. Heart disease is a critically important problem in America, afflicting some 5 million people. Perhaps it’s time to focus on preventing this disease—which we can do, if we do a better job on the prevention of high blood pressure, diabetes, and cigarette smoking. For those patients who do develop heart failure and who are dying of their heart failure, palliative care is an excellent means of addressing their symptoms and supporting them and their families in their final days.

Dutch Treat

The Framingham Study is probably the most famous long-term medical study ever designed. Founded in 1948 to identify risk factors for heart disease, it began by following 5209 people from the city of Framingham, Massachusetts. It was so successful, definitively showing the importance of smoking, high blood pressure, cholesterol, diabetes, and inactivity in causing coronary heart disease, that a second group of about 5000 people were added in 1971—the children of the first group, along with their spouses. Less well-known, but also teeming with useful insights is another epidemiological study, this one conducted in a suburb of Rotterdam, Holland (A. Hofman, P. deJong, C. van Duijn et al, “Epidemiology of Neurologic Diseases in Elderly People: What Did We Learn from the Rotterdam Study?” Lancet Neurology 2006; 5: 545-50).

The Rotterdam Study has been following a group of men and women since 1990 and is concerned with finding potentially modifiable factors that put older people at risk of debilitating chronic disease. It recruited just under 8000 people over the age of 55, with the oldest participant age 106. Each study member was put through a 2-hour interview at home and a 5-hour battery of tests. On average the examinations were repeated every 3 years, focusing on the heart, the blood vessels, eyes, skeleton, and brain.

Just as the Framingham Study was particularly concerned with heart disease, the Rotterdam Study was especially interested in understanding more about neurologic disease (such as dementia and Parkinson’s disease), visual problems (mainly macular degeneration), and problems with mobility (arising principally from osteoporosis and fractures). The investigators found that by age 85, about 20% of the study group had dementia, and by age 95, the percentage had risen to over 40%. But they also found that the same factors that are associated with heart disease—high blood pressure, cholesterol, and cigarette smoking, along with diabetes—are associated with dementia. And those factors appeared to be important not just for the development of “vascular dementia,” or the dementia arising from multiple strokes, but also for producing Alzheimer’s disease.

The good news from Rotterdam, confirming earlier findings from smaller studies, is that we may be able to prevent dementia in the elderly, or at least delay its clinical manifestations, by treating high blood pressure, lowering cholesterol, avoiding smoking, and preventing or treating diabetes. It remains to be demonstrated that actually doing all these things will in fact make a difference, but it seems well worth a try.

Thinking About Long-Term Care Insurance

I’ve always dreaded when people ask me whether they should buy long term care insurance. They assume that as a physician specializing in the care of geriatric patients, I should know the answer, or at least have an opinion. There are so many different policies and people’s circumstances vary so much that I’ve never known what to say. Now the AARP (American Association of Retired Persons) Public Policy Institute has commissioned a report that sheds considerable light on the subject: “Comparing Long-Term Care Insurance Policies: Bewildering Choices for Consumers” (May, 2006). I still don’t have an answer, but at least I understand the issues better.

By way of background, we should all recognize that we face a substantial risk of needing nursing home care. Nearly 50% of people who recently turned 65 can expect to spend some time in a nursing home before they die. For many this will be the last place they live in; for some, it will be a facility where they stay for rehabilitation after hospitalization. The majority of people over age 80 need some form of long term care—fully 68% of men and 77% of women who live at home need assistance with everyday activities (see Wan He, Manisha Sengupta, Victoria Velkoff, and Kimberly DeBarros: US Census Bureau, Current Population Reports, P23-209, 65+ in the United States: 2005. US GPO, Washington, DC, 2005.

We should also be aware that Medicare pays for only a small fraction of our long- term care needs. Medicare covers up to 100 days of skilled nursing home care each “benefit period,” (where a benefit period typically starts at the time of hospitalization). But this kind of “skilled nursing home” care involves short-term rehab after a hospital stay only. Medicare may also pay for a home health aide or homemaker for a limited time after an acute illness. It does not pay for the kind of ongoing care than an older person with one or more chronic diseases may need. Medicaid, the insurance program for the poor and the disabled, does pay for nursing home care or services in the home for those who have used up most of their resources. The actual Medicaid eligibility criteria vary considerably from state to state since Medicaid is a joint federal-state program.

If you think you want to get long term care insurance, you typically need to choose among policies that only cover care in institutional settings, policies that only cover care at home, and comprehensive policies that provide both. While some people figure that the point of a policy is to be able to pay for home care so as to avoid going into a nursing home and therefore are interested only in a home-care policy, the coverage provided is likely to be inadequate to pay for full time help. Many people decide that if they’re going to get long-term care insurance, they may as well guard against all eventualities.

Finally, consumers should be aware that their premiums can increase. Insurance companies cannot single out particular individuals for increases based on their particular circumstances, such as their health. They can, however, raise premiums to entire groups of people, for example those over age 75. Here are some of the specific questions you need to ask if you are looking at a LTC policy:

Does it cover assisted living?

State laws often require that those LTC policies that cover “facility care” provide coverage for assisted living facilities. However, there is no standard definition of assisted living, so insurers can claim that a particular assisted living facility does not qualify.

What level of disability is needed to qualify?

LTC policies only kick in if the insured meets a specified level of disability. Most (but not all) policies accept the standard of impairment in at least 2 activities of daily living (such as dressing, bathing, or going to the bathroom). However, insurance companies can choose how they will determine if you are dependent in these areas.

What is the daily benefit?

The daily benefit amount provided can be as low as $50 a day or over $300 per day. In some cases, if your benefit ceiling is $150/day and your costs are $100/day, you effectively forfeit the difference, even if the following year you enter a nursing home and your costs go up. Another approach is to use a “pool of money.” The total benefit is then the daily benefit times the number of days of coverage (ie the duration of the policy). The pool can be spent for any combination of services: it might be spent slowly (if your only needs are modest home care) or more quickly (in a nursing home).

How long is the waiting period?

Once a person has met the policy’s “disability trigger,” the waiting period is the time before the benefit actually begins. If you have a 100-day waiting period, and nursing home care costs $150/day, you will have to pay $15,000 before the insurance company starts to pay.

What is the duration of the benefit?

Once you start using the LTC benefit, you may have anywhere between 1 year’s worth of coverage and a lifetime’s worth. Most people who need long-term care need it for several years.

Does it have inflation protection?

Unless you have inflation protection, the daily benefit will lose in value relative to the cost of care. This is an especially severe problem for younger purchasers whose benefit may be inadequate to cover the costs of care years later.

Summary

As the AARP report suggests, it would be very helpful if the government mandated standard policy benefits and provisions, just as is the case for supplemental Medicare policies. In addition, it would be desirable to require companies to offer to pay family caregivers. Finally, LTC policies that pay benefits for multiple types of care should make the total value of all benefits available in any covered setting.

Until such regulations are passed, consumers are faced with a confusing array of possibilities. If you decide you want to buy LTC insurance, you should generally choose a comprehensive policy. You should make sure that by “comprehensive” it in fact does cover assisted living facilities. You probably will want a policy that specifies the maximum total amount it will pay out and that allows you to allocate that amount between home care, assisted living, and nursing home care, as you see fit. You should be sure that the benefit will go into effect once you are dependent in 2 activities of daily living, that the waiting period if no more than 100 days, and that the duration of coverage is at least 3 years. The cost of the premium for such a policy may be very high. Once the insurance agent quotes you a premium, you will need to consider whether you would be better off setting aside money regularly as a special LTC fund for yourself.

Washington Post Review

The following review appeared in the Washington Post on Sunday. It's perhaps a bit overstated, but positive nonetheless.

In The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies (Harvard Univ., $25.95), Muriel R. Gillick whacks all the major players orchestrating the Last Dance of America's senior citizens. Medicare is misguided, she argues. Nursing homes are like prisons. Assisted living facilities are too often motivated by greed. Doctors (Gillick is a physician, by the way) are too willing to extend life at any cost. Relatives often have lousy judgment about what's best for a loved one. Even those facing their own finality are too focused on themselves.

In assessing the nation's retirement and health care institutions, Gillick is not the first to see flaws that are ruinous both for the seniors receiving aid and for those of us receiving huge bills for that aid. For example, she notes that while most people want to spend their last days at home, only a quarter of people over age 65 do so. Twice as many die in hospitals, which are so focused on keeping patients alive that they haven't mastered the art of respectfully allowing those near death to leave this world.

For those who need medical care, Gillick would deliver more of it at home, via phone calls, visits from practitioners and other simple measures that have proved effective and efficient. But don't mistake Gillick for a heartless advocate of rationed care. She wants to keep old people alive and well for however long each person can thrive. But she views many efforts to protect nursing-home residents as more of a problem than a solution. By focusing on statistics and standards aimed at ensuring quality of care for these people, she contends, the government is actually prompting these institutions to ignore quality of life.

Gillick challenges Baby Boomers to reengineer nursing homes, first into true homes where elders can thrive and, when necessary, into places providing the care they need to either recover or spend their final days in comfort. More broadly, she challenges her generation to embrace the inevitability of aging and to make the most of it. That would be quite a legacy for the Baby Boomers to leave their children.

--Tom Graham

When More is Less

Last week, Dartmouth’s Center for the Evaluative Clinical Sciences released the latest version of its “atlas” of medical care in the U.S. Since 1993, the Dartmouth Atlas Project has produced a fascinating series of studies examining the geographic variability in health care resources and their utilization. A consistent theme throughout the life of the project has been that the availability of resources drives their use: surgical rates—even for elective surgery—are higher in communities with more surgeons; hospitalization rates are higher in areas with more hospital beds. The newest report, called “The Care of Patients with Severe Chronic Illness: A Report on the Medicare Program by the Dartmouth Atlas Project” draws the same conclusions about the care for people with chronic disease (available in entirety online here)

Chronic disease—conditions such as diabetes, cancer, and heart disease—is the major health problem among Americans today, afflicting some 90 million people and accounting for 7 out of 10 deaths. The care of people with chronic illness accounts for over 75% of all U.S. health care expenditures. And most of the people with chronic conditions are elderly.

The principal finding of the Dartmouth study is that Medicare spends much more per enrollee in some states than in others. Spending for patients with severe chronic illness during their last 2 years of life ranges from almost $40,000/person in New Jersey, Washington, D.C., California, New York and Maryland, to under $25,000 in states including Idaho, Iowa, West Virginia and North Dakota. The variability is not due to higher rates of sickness in some regions. In fact, differences in illness levels are “virtually unrelated to differences in spending.” The other disturbing finding of the study is that the extra spending does not buy longer life or better quality of life. On the contrary, those with chronic illness in high spending regions have shorter life expectancies and less satisfaction with their care.

Spending on chronic illness varies by state, with those states that have greater reliance on primary care than on specialists spending less money and depending less on intensive care units. In Florida, for instance, Medicare patients who died spend an average of 4.7 days in the ICU during the last 6 months of life (a marker of the aggressiveness of care), whereas patients in North Dakota spend only 1.5 days. Academic medical centers also vary in the way they manage chronic illness: during the last 6 months of life, for example, patients who use New York University Hospital have an average of 76 physician visits, compared to 24 visits for patients who use the Mayo Clinic. In general, acute hospitals are dramatically over-used (in Hawaii, patients spend an average of 16.4 days in the hospital during their last 6 months of life, compared to 7.3 days in Utah) and hospice care is under-utilized (while in Arizona, 44.7% of dying patients are enrolled in hospice, in Alaska it is only 6.7% and the national average is 27.2%).

The authors conclude that what we need is “a population-based, community wide integrated system for managing severe chronic illness.” I agree. Specialists have no incentive to refer patients to hospice care; they do have incentives to order diagnostic tests and to use ICU care. Hospitals likewise, unless they are part of a network of care, have no incentive to enable patients to die at home; they benefit if their beds are filled. If we had a comprehensive system—and the closest that any segment of the U.S. comes to such an approach is the Veterans Administration system—Medicare would reduce its costs on patients with chronic disease by 30%, while simultaneously improving care.

Aricept Redux

Three months ago I wrote a column arguing that in the U.S. we over-use donepezil (Aricept), a drug widely touted as helpful in early Alzheimer’s disease (“Americans, Alzheimer’s, and Aricept,” February 1, 2006). In Britain, by contrast, careful review of all the available studies led to the recommendation by NICE (the independent National Institute for Health and Clinical Excellence) against routine use of this medication. Now a new study suggests that donepezil may help patients with advanced Alzheimer’s disease, people who need help with basic tasks such as bathing and dressing and who have profound cognitive impairment (see B. Winblad, L. Kilanter, S. Erikkson et al, “Donepezil in Patients with Severe Alzheimer’s Disease: Double-Blind, Parallel Group, Placebo-Controlled Study,” Lancet 2006; 367:1057-65). How can this be? Are we seeing an attempt to find some use, any use, for this drug, which does not appear to be tremendously useful in early Alzheimer’s patients, the group in whom it was initially targeted?

The new study was carried out in Swedish nursing homes. Subjects were randomized to receive either donepezil or placebo and they were treated for 6 months. The treated group showed slight improvement in tests of mental function and a lower rate of deterioration in basic activities of daily living compared to controls. But before families rush to request donepezil for their relatives, we should consider the intriguing possibility raised by the study’s authors: perhaps what the donezpezil did was to counteract the negative effects of the many other medications these individuals were taking. Virtually all the people in the study (99%) were taking other medications, and 80% were on psychoactive medications intended to control their behavior. We know that the brains of individuals with dementia are very sensitive to chemicals that affect the nervous system—they are very prone to developing delirium, or an acute confusional state. Before concluding that all patients with severe dementia should be given donepezil, we need to study its effectiveness in demented persons who are on no other medications. Only then can we figure out whether we should dole out more donepezil (assuming that the “statistically significant” benefits are in fact clinically meaningful)—or give patients a drug holiday, discontinuing the many potentially toxic medicines they are currently taking.