Wednesday, September 20, 2006

Today is World Alzheimer’s Day, set aside by Alzheimer associations around the world to concentrate on raising awareness about dementia. There are an estimated 24 million people around the world who currently have dementia.

Alzheimer’s is one of the costliest maladies draining insurance companies and family savings. And because the medical community is now able to help us live longer lives, the number of Alzheimer’s sufferers is increasing at an alarming rate.

In June 1999, Rep. Ed Markey, Massachusetts Democrat, and Rep. Chris Smith, New Jersey Republican, joined as co-chairs of the Bipartisan Congressional Task Force on Alzheimer’s Disease, a task force that continues providing an immeasurable degree of leadership.

Sens. Hillary Clinton, New York Democrat, and Susan Collins, Maine Republican, head the Senate effort. Both are active, vigorous and conscientious advocates.

Congressional committees responsible for funding Alzheimer’s research and treatment projects voted to limit or decrease most projects in the budget now under consideration on Capitol Hill.

Alzheimer’s disease is a progressive brain disorder that gradually destroys a memory and ability to learn, reason, make judgments, communicate and carry out daily activities. As Alzheimer’s progresses, individuals may also experience changes in personality and behavior, such as anxiety, suspiciousness or agitation, as well as delusions or hallucinations.

Because Alzheimer’s is a disease, a malfunction if you will, in the brain, patients and their families often experience difficulty in properly diagnosing the disease and getting treatment. While doctors often rely heavily on the patient’s complaints to diagnose other diseases, a patient with Alzheimer’s may be unable or reluctant to describe his or her own confusion and distress.

Add to that, the patient may be reclusive, untrusting and/or overly proud. The patient may suffer through long days of confusion and misinterpretation, only to rally in front of the doctor and hide any hint of disability.

My friend Ron may be the classic example of Alzheimer’s disease running amok in a sufferer both confused and no longer able to routinely make rational decisions others take for granted. He is not only unable to make the decisions; he agonizes over simple decisions for days or weeks at a time.

And Alzheimer’s disease sufferers can be dangerous, in extreme cases, to themselves and others. Ron has had three recent car accidents. His insurance policy was revoked. But, unable to properly self-diagnose and afraid a doctor might recommend he stop driving, Ron, like untold numbers of others, retains his license, continues to drive, and found new, though more expensive, insurance coverage.

We experienced the agony of Alzheimer’s in our own family. My mother progressed over several years from exhibiting slightly odd behavior to the stage we all most fear. She became almost a totally different person. She became both difficult to care for and hard to love. She eventually needed full time nursing home care: a costly proposition even for the well-heeled and adequately insured.

Fortunately, there is lots of help available. Help groups, seminars and treatment opportunities abound. In my county, for example, people over age 65 can ride a taxi almost anywhere for $1 so nobody who feels unsafe doing so needs to drive.

What are the costs of a progressive brain disease on an aging society?

At the 10th International Conference on Alzheimer’s Disease and Related Disorders (ICAD), in Madrid in July 2006, Dr. Anders Wimo of the Stockholm Gerontology Research Center and Aging Research Center at Karolinska Institute, Sweden, said worldwide costs of dementia care (combined direct and informal costs) is around $248 billion annually. This overlooks the fact many suffer the ill effects and still receive no care and that our aging population is growing at a breathtaking rate.

“These startling cost estimates for Alzheimer’s care clearly illustrate the great challenges faced by both families and our national health-care systems as the number of people with Alzheimer’s continues to grow,” said William Thies, Alzheimer’s Association vice president of medical and scientific relations. “Increasing the funding for Alzheimer’s research into early detection, better treatment and prevention is critical to curbing this impending world health disaster. We can fund research now or wait for Alzheimer’s to overwhelm the health systems in the U.S. and throughout the world.”

According to the Department of Health and Human Services Administration on Aging, the older population — persons 65 years or older — numbered 36.3 million in 2004 (the latest year for which data are available). They represented 12.4 percent of the U.S. population, about 1 in 8 Americans. By 2030, there will be about 71.5 million older persons, more than twice their number in 2000. People 65 and older represented 12.4 percent of the population in the year 2000 but are expected to grow to 20 percent of the population by 2030.

According to the U.S. Alzheimer’s Association, Medicare costs for people with Alzheimer’s will be more than $1 trillion by 2050 and Medicaid costs for nursing home care alone will be about $118 billion.

Nobody can say for sure how many among us will have Alzheimer’s in the future but some experts say we will have 16 million or more Alzheimer’s sufferers in America by 2050. The treatment costs will certainly be staggering.

“All too often, seniors are unable to access adequate mental health care in their communities, even when they have access to other health care services in places like local community centers,” said Miss Collins, who works closely in the Congressional Task Force on Alzheimer’s Disease with Mrs. Clinton and others.

Add to this health-care crisis an often overlooked segment of the population that Mrs. Clinton often discusses: patients and sufferers from Early Onset Alzheimer’s Disease. These are younger sufferers; people sometimes as young as 50.

“Alzheimer’s doesn’t just affect the elderly,” Mrs. Clinton said. “When Alzheimer’s disease or other dementias unexpectedly strike younger individuals, they face daunting challenges in addition to the disease itself, like difficulty obtaining a diagnosis, early retirement and the loss of jobs and income.”

Congressional funding for Alzheimer’s education, research and related programs such as 24-hour-a-day, seven-days-a-week Call Centers, the National Family Caregiver Support Program, and other efforts, is never easily secured. Congressional committees with oversight and funding authority for Alzheimer’s projects have already recommended cutting funds for several Alzheimer’s programs in this budget cycle and the House and Senate are not expected to vote on Alzheimer’s projects until after the November elections.

“Although we have made progress in the awareness, diagnosis, and treatment of Alzheimer’s over the past 15 years… we must do more,” Mrs. Clinton said. “We must continue to make this disease a national priority. This means directing more resources to learn how to identify early onset dementia and stop its progression.

“I am hopeful that together we can combat this disease and do all we can to bring hope, help and an eventual cure to the millions of Americans with Alzheimer’s.”

John E. Carey is the former president of International Defense Consultants Inc.

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