Friday, February 15, 2013

Alzheimer’s Future: Research or Palliative Care


I’m a baby boomer and I know just how old we are getting. This year I plan to retire and hope to have time, finally, to enjoy all the activities I’ve had to put on the back burner or reserve for a few weeks of vacation. What I don’t want in my future is to be brought down by Alzheimer’s as we know it today.

Alzheimer’s disease would rob me of my memories, my skills, and effectively end life as I know it. I want to remain active throughout my old age and still have the ability to enjoy life thoroughly. I want to be like my mother!

We are nearing the crossroads with Alzheimer’s as we baby boomers age. Left unchecked, 13.8 million of us can look forward to developing Alzheimer’s disease. I don’t think there are thirteen of us who want this future, much less 13.8 million.

Why is this important to us? We all want to think that we will be one of the lucky ones that without Alzheimer’s in our future. The biggest problem is we are not investing in preventing Alzheimer’s. We seem to be sitting on our butts instead of doing something about Alzheimer’s now.

Do you know how much this country invests in Alzheimer’s research? Last year the National Institutes of Health invested $606 million in Alzheimer’s research. That seems like a lot of money, doesn’t it? In fact, for Alzheimer’s it was the first time research funding from NIH exceeded $500 million. Should we be doing a happy dance? Not so fast. How much will it take to find a cure for Alzheimer’s? Just to give it some perspective—NIH spends $6 billion a year on cancer, and $3 billion for HIV/AIDS.

I know we have a budgetary crisis, and I really think we need to do something about it. In 2012, the cost of Alzheimer’s care totaled $200 billion, including Medicare and Medicaid payments of $140 billion. The cost of Alzheimer’s care is expected to increase 500% to $1.1 trillion by 2050 as we baby boomers age.

Think about these staggering numbers for just a moment. I’ll admit that I have trouble wrapping my head around numbers that start with a “b,” much less a “t”. If you look at Alzheimer’s from strictly a financial viewpoint, you have to admit that something has to be done. The only logical way to stop this impending financial disaster is to find a cure, or at least treatment that will halt the disease before it destroys independent living.

Are we ever going to accomplish this goal without investing in research? That is a question we need to ask our legislators, and it is one we do ask each year during our Capitol Hill visits following the Alzheimer’s Advocacy Forum.

For a moment, let’s put all talk of financial considerations aside. The bottom line in this entire argument is the emotional impact on those diagnosed with dementia and their families. Alzheimer’s is a life-changing event from which there is no turning back. It takes strength and determination to continue with quality life for persons with the disease, their family, and friends.

Though my volunteer work with the Alzheimer’s Association, I’ve met many people with Alzheimer’s and caregivers who manage this devastating diagnosis with dignity and courage. They have allowed news media into their homes to bring awareness. They don purple sashes, talk to their legislators about the disease, and leave a sense of urgency in their wake. Advocates with the disease give a face to the 5.4 million Americans who are living with Alzheimer’s right now, right here, in the United States.

So when we talk about the future of Alzheimer’s, we need to push, and push hard, for a cure, not palliative care for 5.4 million people today or 13.8 million in 2050.  Each life disrupted by Alzheimer’s is one too many. Our loved ones are not statistics—they are human beings with families that love them and memories far too precious to lose.

Copyright © February 2013 by L.S. Fisher