Alzheimer's Disease

Alzheimer's disease is a progressive, degenerative neurologic disease involving the accumulation of abnormal amounts of a chemical substance called amyloid in various parts of the brain. It particularly involves those areas of the brain crucial for memory. Approximately 10% of cases are genetic. The cause of the remaining cases is not known, though certain risk factors, some of which are also genetic, have been identified. Alzheimer's disease afflicts an estimated 4.5 million Americans. The risk of developing the disorder rises with age: only 5% of people aged 65-74 have Alzheimer's disease, while nearly 50% of those over 85 have the illness.

Does remaining intellectually active prevent Alzheimer's disease?

Mental activity, while beneficial for social well-being, cannot prevent Alzheimer's disease, although there is evidence that mental stimulation may delay the onset of the disorder. Once a person has Alzheimer's, mental activity can improve a person's performance (just as practicing can improve one's piano playing), but will not halt the progression of the disease. Becoming withdrawn and reclusive, particularly if one develops full-fledged depression, can exacerbate the deficits due to dementia.

Is there treatment for Alzheimer's disease?

There are medications that may be useful for individuals with Alzheimer's disease. The major class of drugs that are prescribed to delay the progression of the disease in individuals with mild to moderate disease are the cholinesterase inhibitors, such as Donepezil or Rivastigmine. Another type of drug, used in people with moderate to severe Alzheimer's is Memantine, which has been shown to delay progression to the most advanced stages of the disease. Whether it is desirable to prolong the moderately severe stage, however, is questionable. A British analysis of all the studies examining the effectiveness of these drugs found that they result in a modest improvement in cognitive function as measured by standard tests. However, whether these changes are great enough to translate into any meaningful practical improvement is questionable. The British review sparked considerable controversy, and the drugs continue to be widely prescribed, especially in the United States.

Other medications used in the treatment of Alzheimer's disease target the symptoms of paranoia and agitation rather than cognitive impairment. Most commonly used are the neuroleptics, or antipsychotics, such as Risperidone or Haloperidol. Recent studies suggest there may be an increased risk of stroke after initiating these drugs, but the data are preliminary and the risk, if real, is small. Other side effects, such as sedation and gait imbalance, are often the limiting factors in their use. Other medications such as the antidepressant Trazodone and the anti-seizure medication Carbamazepine are sometimes helpful in controlling the behavioral symptoms associated with Alzheimer's disease.

Is a cure for Alzheimer's disease imminent?

Scientists have made tremendous progress in understanding the biochemical basis of Alzheimer's disease over the past ten years. The genes responsible for three different forms of inherited Alzheimer's disease (on chromosomes 1, 14, and 21) have been identified. The molecular pathways that are disturbed in the more common, non-genetic form of the disease have also been described. But it's a long way from understanding the biological basis of a disease to developing a cure. Curing Alzheimer's disease is a particularly tough problem, given the complex nature of diseases of the brain. In fact, no progressive neurologic disease-such as Parkinson's, multiple sclerosis, or amyotrophic lateral sclerosis (Lou Gehrig's disease) has been cured. Breakthroughs are possible and progress is certain, but a cure is probably not around the corner.

For more information about Alzheimer's disease, see M. R. Gillick, Tangled Minds: Understanding Alzheimer's Disease and Other Dementias


Advance Care Planning

Advance care planning-thinking about what approach to care they would want if they became seriously ill-is critically important for older people. It is important because many older people become too confused to make decisions when they are ill, even individuals who are totally intact mentally when they are well. It is also very useful to plan ahead because it gives people an opportunity to think about what are often difficult issues in a relaxed atmosphere. Since most older people will develop significant medical problems sooner or later, concerns about what kind of treatment to choose are likely to be very real and not merely theoretical.

What Kind of Advance Directives Should Older People Use?

Advance directives are instruments for specifying in advance, when of sound mind, what you would or would not want in the event you become unable to make decisions for yourself. Two types of advance directive in widespread use are the health care proxy and the living will. Designating a health care proxy simply means selecting who will be empowered to make decisions on your behalf if you lose the capacity to do so. Completing a living will means indicating what sort of approach you would favor in the event, for example, of a terminal illness. Ideally, older people should appoint a health care proxy and fill out a living will. If you choose a proxy, you should discuss with that person your preferences. If you sign a living will, versions of which are available from many organizations such as Aging With Dignity (available on line through agingwithdignity.org ), you should consider specifying particular interventions that you might find excessively burdensome, such as being put on a ventilator (a breathing machine) or having a permanent feeding tube.

Will advance care planning prevent a Terri Schiavo situation?

Cases such as that of Terri Schiavo, a young woman in a persistent vegetative state whose husband and parents disagreed about the approach to her care, are fortunately rare. Specifying who should make decisions for you if you are unable to make decisions for yourself and talking to your designated surrogate about your wishes can go a long way to avoiding the sort of bitter conflict that arose in the Schiavo family. To be sure that your advance directives are portable-that decisions made in one setting (such as the doctor's office) are carried over to other sites of care (such as the hospital)-it may be useful to make use of "do not resuscitate verification orders" or "comfort care orders" available in many states. These documents have been developed to assure that advance directives are honored by ambulance drivers as they transport patients from home to the hospital or the doctor's office. In Massachusetts, whose "DNR verification orders" went into effect on January 1, 2000, there is a special form that must be presented to ambulance drivers if patients wish to avoid attempted cardiopulmonary resuscitation (chest compressions, electric shocks, and artificial respiration in the event the heart stops) or intubation (insertion of a breathing tube into the lungs in the event of seriously compromised breathing). The form must be signed by the patient and his proxy and by his physician. An alternative to the form is a special bracelet carrying the equivalent information.

Other states, such as Oregon and West Virginia, have more comprehensive forms that enable patients to make decisions about which of a variety of treatments they would want or not want. Oregon pioneered this form, the Physician Orders for Life-Sustaining Treatment (POLST), which is recognized throughout the state.

Any older person who has decided against particular interventions in the event of serious illness should consider completing a "DNR verification order," "POLST" form, or whatever is available in his state. This step is especially important for patients enrolled in a hospice program or who have advanced heart or lung disease, where there is a reasonably likelihood that they will be sick enough during transport to a hospital for these measures to be initiated. Completed forms should be tacked onto the refrigerator or the bracelet should be worn at all times.

For more information about advance directives, see M.R. Gillick, "Advance Care Planning," New England Journal of Medicine 2004; 350: 7-8.


Medicare

Many older Americans believe that once they reach age 65, they will not have to worry about getting health care: all their needs will be proved by Medicare, the federal health insurance program. The one widely acknowledged flaw in the program, the lack of a prescription drug benefit, was remedied by the Medicare Modernization Act of 2003. With this addition, surely Medicare is a nearly perfect program. In fact, Medicare does not cover a great many beneficial treatments and services, ranging from eyeglasses and hearing aids to long-term nursing home care. The net effect is that elderly people today are paying more out of pocket for health care than they did before Medicare was introduced. But the problem with Medicare is not just what it leaves out. A deeper, more fundamental problem is that embedded in the Medicare program are powerful incentives that shape the kinds of decisions that physicians, hospitals, and patients make-and these incentives serve to discourage them from using exactly the kinds of treatment that make sense for huge numbers of older people, such as intermediate and palliative care.

Medicare is an excellent program-for the most vigorous of older people. It is no surprise that Medicare serves very robust elders well, since it was originally designed to provide coverage for older patients with episodic, reversible disease. It works beautifully for a person with an acute illness such as pneumonia or gallstones, which typically requires a brief hospital stay and a short course of treatment-antibiotics for the former and surgery for the latter. For robust elders with several chronic diseases-and nearly 80% of people over 65 have at least one chronic condition-Medicare is not quite as good: it does not routinely include special programs to manage those chronic diseases, nor does it fully cover prescription drugs, which are critically important to prevent the chronic diseases from becoming acute problems.

But if Medicare is a good program for robust elders, it is profoundly inadequate for people who are frail or who are nearing the end of life. The reason that it is inadequate is that it favors institutional care over home care, it supports technology-intensive treatment rather than labor-intensive care, and it fails to provide adequately for chronic diseases. And people who have multiple medical conditions or are on the home stretch fare best with care that keeps them out of hospitals, that helps them manage chronic illness, and that substitutes low-technology treatment for invasive therapy.

Medicare and the Frail Elderly

Medicare favors high tech solutions to medical problems by encouraging hospital care for a variety of conditions that could be adequately treated in the less technologically-intensive environment of the nursing home. Uncomplicated pneumonia or a blood clot in the leg can readily be treated in a skilled nursing home. But in order to be eligible for admission to a nursing home, Medicare regulations require that a patient stay over night in a hospital for three days. This rule does not only mean Medicare favors an expensive option (hospital care) over a less expensive alternative (skilled nursing facility care) In fact, hospitalization is not merely costly; it is also risky. In the hospital, an elderly patient is typically put through extensive testing, which is likely to turn up some "problem" that leads to more testing, none of which is necessarily in the patient's best interest. Hospitalized patients are at risk of contracting serious infections from being in the hospital itself. And the multiple moves characteristic of a modern day hospital stay are frequently disruptive and potentially dangerous: every time a patient transfers from one setting to another, a physician has to transcribe his orders. Each time the medication orders are re-written, a process that is currently done by hand, by the physician at the receiving end of the transfer, there is a chance of an error. When patients move from one site to another, their new caregivers often do not know anything about their baseline status. They cannot judge what problems are new and which issues are old. As a result, patients who develop acute confusion-a state which is both serious and treatable-are often mistakenly thought to have dementia, and patients who are depressed-which is likewise serious and treatable-are often misdiagnosed as withdrawn or cognitively impaired.

What people with frailty so desperately need, and what is missing from conventional Medicare, is care that offers continuity, coordination, and comprehensiveness. They need a team approach to care because the health of a frail older person is as dependent on social workers, physical therapists, chaplains, and nurses as it is on physician care. Typical teams are comprised of a physician, social worker and nurse who serve as the core and who call in other members as needed. A member of the team has to be available any time of day or night since emergencies occur at all hours. Frail individuals also need chronic disease management, an intensive system of monitoring the various disorders that render them frail. Medicare is only now beginning to provide coverage for a few selected disease management programs.

Medicare and End-of-Life Care

End-of-life care illustrates all of Medicare's perverse incentives-substitution of high technology for low technology care, substitution of institutional care for home care, and a focus on acute rather than chronic illness. Many terminally ill patients are hospitalized for management of intractable symptoms such as pain, nausea, or shortness of breath. These patients will typically receive aggressive treatments and diagnostic tests, rather than exclusively palliative care. Medicare also favors hospital care over home care for terminally ill patients, with the exception of those enrolled in hospice, because home care, like skilled nursing facility care, is difficult to arrange without a prior hospital stay. As a result, 50% of Medicare beneficiaries die in the hospital and only 16% at home, although the vast majority would prefer to die at home.

Even the hospice program, in which patients can enroll if they have a prognosis of less than six months, though very well-regarded by participants and their families, focuses primarily on the actively dying patient. End-of-life care should be seen as treatment for patients with a "serious and complex illness," a condition that is disabling, progressive, and ultimately fatal. That hospice care is widely viewed by patients and physicians alike as care for the dying is reflected in the fact that the median survival of patients after enrollment in Medicare hospice is a mere 36 days, and many patients die within a week. While an exclusive focus on comfort care makes sense for many patients whose death is imminent, a combination of palliative and curative treatment may be quite reasonable for patients whose prognosis is less certain or who are not psychologically ready to accept the label of "terminal illness." The current reality is that the majority of patients who are near the end of life receive technologically intensive care in a hospital and enroll in hospice, if at all, only when they will die in a matter of days or weeks. Restructuring the incentives within Medicare would allow patients with serious and complex illness to be eligible for home care without denying them the possibility of hospital treatment.

True Medicare Reform

If Medicare is deeply dysfunctional for frail elders and for those approaching the end of life, how should it be reformed? The key is that the one-size-fits-all model does not work for older people, who are a heterogeneous group with vastly differing needs depending not on their chronologic age but on their overall state of health. The Medicare program has implicitly acknowledged this reality by creating two distinct alternatives to conventional Medicare for a fairly small segment of the eligible population: the Program of All-Inclusive Care of the Elderly (PACE) for the frail and the hospice program for the terminally ill. The criteria for enrolling in these Medicare variants are so restrictive that not many have done so (in the case of PACE), and those who do join (in the case of hospice), are only in the program for a very short period. The vast majority of older people continue to subscribe to traditional Medicare, whether the fee-for-service or the capitated variety. But these versions of Medicare, suitably modified, can form the basis for a new system of three discrete packages offering an intensive, a comprehensive, and a palliative approach to care.

Adapted from "The Trouble with Medicare" in M.R. Gillick's forthcoming book, The Denial of Aging

For further details see also M.R. Gillick and S.L. Mitchell, "A Framework for Meaningful Medicare Reform," Journal of Aging and Social Policy 2004; 16: 1-12.

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