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Let’s Stand Up Against Alzheimer’s Disease : Research Dollars for This Vicious Affliction Will Remain a Trickle Unless Public Speaks

<i> Edward R. Roybal (D-Los Angeles) is the chairman of the House Select Committee on Aging</i>

In recent years more and more Americans have had a personal contact with Alzheimer’s disease and related disorders.

Biomedical research has given us the miracle of longer life, with an age span of 70 years no longer uncommon. The over-65 age group is the fastest-growing segment of our population and is changing in character. The stereotype of the tottering retiree is being replaced by a modern, on-the-move older adult who looks more like a person in the age range of 55 to 65. Neither of the stereotypes is correct, and both of them misconstrue the heterogeneous character of America’s elderly. However, as we age we cannot ignore the truth that we become more frail and more susceptible to the diseases that are associated with advancing years. One of the cruelest of these is dementia, and one of the most common forms of dementia is Alzheimer’s disease.

Alzheimer’s disease is vicious. At present it can’t be prevented, cured or even effectively treated. The victims go through a period in which they slowly lose cognitive ability and independence--continuing to live but unable to care for themselves. Most are cared for at home, adversely affecting the patterns of living of the entire family. Over time, Alzheimer’s disease patients often become too difficult for the families to handle without outside help. Such care, be it administered at home or in a nursing home, can easily reach $22,000 a year or more.

The true human and economic cost of Alzheimer’s disease is as enormous as that of heart disease and cancer, but the federal response has been meager. Annual federal research funding for several major diseases is nearly $1 billion each, compared to just $67 million for Alzheimer’s-related research.

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At the same time, the cost of care to the victims of Alzheimer’s disease is calculated at more than $50 billion annually. Even this high cost figure underestimates the true effect, since the figure does not include the largest portion of care that the victims receive--that from their family and friends, the legions of unpaid caregivers.

Very few persons have any form of health insurance that will pay for the care of dementia patients. We estimate that more than 200 million Americans are underinsured for long-term costs. The only major long-term-care insurance cover-age comes from Medicaid, for those who are poor or spend down their resources to the poverty level. In fact, one-half of Medicaid-covered nursing-home patients became impoverished through the high cost of their long-term health care. Of the elderly who are living alone, more than 90% would be impoverished after one year in a nursing home. Federal financial aid for long-term care is not available through Medicare.

The downhill path of Alzheimer’s can continue for many years. One recent study estimated the average duration from onset to death at six to eight years. However, some cases may last as long as 25 years.

The demographics of Alzheimer’s should be cause for alarm. As our population ages, the number of those afflicted will grow: 1% of the population up to age 75 has the disease. Within the age group of 75 to 85, the number increases significantly, to 10%, and within the age group of 85 and over it doubles again to a frightening 20%. The age group of 85 and older is the fastest-growing portion of our population. When our present group of “baby boomers” are in their retirement years, as many as 6 million of them will fall victim to Alzheimer’s disease or a related disorder.

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One of the tragedies of the situation is that we first recognized the enormity of Alzheimer’s disease just when the federal government was cutting back its spending for health care. As a result, federal funds for badly needed assistance programs and worthwhile Alzheimer’s research have been severely limited, and have never grown to a level commensurate with the size of the problem.

Reps. Henry A. Waxman (D-Los Angeles) and Pete Stark (D-Oakland) have joined me in introducing a bill that calls for a tripling of biomedical research funding, creating new state programs and an expansion of training of health-care professionals and paraprofessionals. It aims to make up for past deficiencies in public support to Alzheimer’s victims and to provide a major boost in research funding. An Office of Technology Assessment study reports that federal funding supports less than one-fifth of the dementia-related research projects that have been approved by experts in the field.

It is the responsibility of Congress to find the money to support a war against dementia, but Congress must get the impetus and direction from the American people. When tight federal budgets call for difficult choices, the public must make its will clear. It should demand that a way be found to protect every member of our society from dreaded diseases like Alzheimer’s.

If we can find money to build weapons of war to take lives, we should certainly find money to find ways to save lives. When we compare the economic cost of care for Alzheimer’s victims to research dollars expended, we see that the federal government funds roughly $1 for research for every $1,000 in societal cost. This imbalance indicates that we do not understand and have not accepted the magnitude of Alzheimer’s disease and its effect on millions of American families.

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