Sunday, May 23, 2010

Change the Trajectory of Alzheimer’s

For the past ten years, I’ve joined with other Alzheimer’s advocates to proclaim loud and clear that Alzheimer’s disease will have a detrimental impact on this country’s financial future. We who advocate for Alzheimer’s research and programs sometimes feel neglected. Mega resources are spent on diseases that are better known or understood, or sometimes trendy in the sense that it catches the attention of the media or a popular celebrity.

The first hurtle for Alzheimer’s advocates is to educate legislators, and the American public, that Alzheimer’s isn’t a joke about people getting older and more forgetful. We point out, politely of course, that Alzheimer’s isn’t getting much of the National Institute of Health’s research pie and still far short of the $1 billion goal we had the first year I attended the Public Policy Forum.

The Alzheimer’s Association has just released a report “Changing the Trajectory of Alzheimer’s Disease: A National Imperative.” Research dollars for Alzheimer’s is pushed to the bottom of the list—after all, it affects only elderly people, doesn’t it? It’s just a little forgetfulness, isn’t it? There is medication that slows or stops the progression, don’t you know? The answers to those questions are wrong, wrong, and wrong again.

Alzheimer’s is an incurable brain disorder that brings about brain cell death. It is an economic and emotional hardship on the family when their loved one is diagnosed with dementia. Harry Johns, President and CEO of the Alzheimer’s Association, said, “Today, there are no treatments that can prevent, delay, slow or stop the progression of Alzheimer’s.”

As advocates, we tell our personal stories and rely on staggering statistics to persuade legislators to allocate more funds to eradicate this devastating disease. Alzheimer’s has forever changed the lives, and dreams of more than five million Americans.

An investment in research now can drastically change the trajectory of Alzheimer’s. Without effective treatment or a cure we can expect the number of people 65 or older with Alzheimer’s to increase from 5.1 million today to 13.5 million by the middle of the century. This is the human tragedy of the disease. Financially, by the time Medicare, Medicaid, medical expenses, and providing care are factored in—Alzheimer’s disease will cost the United States $20 trillion (with a T) over the next forty years.

Of course, the ultimate goal is to find a vaccine to prevent Alzheimer’s or treatment that will cure the disease. Even a five-year delay would reduce the 2050 numbers to 7.7 million instead of the 13.5 million projected to develop the disease.

When Jim developed an Alzheimer’s type of dementia, I learned what an un-funny joke it is. I received the wakeup call informing me that dementia doesn’t just affect the elderly. Jim was only forty-nine when the relentless process began. After ten years, the disease won—just like it has 100% of the time. The only survivors at Memory Walk are the family members who learned that through perseverance, faith, and unconditional love, they can endure the decade or decades leading to the journey’s end.

Has the time come that we need to end our polite request for Alzheimer’s research dollars? Has the time come for us to demonstrate the same perseverance for research that we showed to survive caregiving, or living with a disease without a cure?

A first step is to push for the National Alzheimer’s Project Act. This legislation would develop a national plan through a National Alzheimer’s Project Office. With the combined efforts of stakeholders in the disease—caregivers, people with the disease, providers—and federal government agencies, a comprehensive plan could be devised to address all the issues caused by Alzheimer’s. Not only do we need research so that someday we have survivors, we also need programs for those living with the disease.

Age does not cause Alzheimer’s, but it is the No. 1 risk factor. Without a united effort to find the elusive cure for this disease, those of us who live to be eighty years old will have a fifty percent chance of developing Alzheimer’s. I don’t think it is selfish of me to admit I don’t want to spend the last years of my life with a brain disorder that will rob me of my memories. The time has come to kick our advocacy up a notch to change the trajectory of Alzheimer’s.

copyright (c) May 2010 L. S. Fisher
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