My husband and I have started a new national campaign called USAgainstAlzheimer's. Our goal is clear-cut: to stop or avert Alzheimer's by the year 2020. We have been going door-to-door in Congress and the Senate, as well as meeting with Administration officials asking/begging for additional funding for research. This is a bipartisan effort since he is a Republican and I am a Democrat and because this Alzheimer's knows no party lines!
During this process I was struck by how many Senators/Representatives and Administration officials seemed resigned to Alzheimer's being a part of their lives. Before I leave those offices I offer a piece of advice: if you want to avoid Alzheimer's, die young.
While governments around the world are being challenged and turned inside out by texts and tweets, some of our policymakers are stuck in the old three-door routine in dealing with advocates for issues like Alzheimer's: Door 1 -- listen, sympathize, but can't get involved right now; Door 2 -- glance at all the facts, sympathize, will try to get back to you in the next few months; Door 3 -- understand the fiscal and emotional stakes and act now!
Here are the realities:
An estimated 5.4 million American's have Alzheimer's disease. Another American develops Alzheimer's disease every 69 seconds. In 2010, 14.9 million family and friends provided 17 billion hours of unpaid care to those with Alzheimer's and other dementias.
The majority of caretakers are women. Thus, women may very well witness the erosion of all the progress they have made in the workplace in recent decades -- not because they aren't well-equipped for the job, but because they have to stay home and care for a parent or a husband with this hideous disease.
The cost of caring for those with Alzheimer's to American society will total $183 billion in 2011.
Deaths from Alzheimer's increased 66 percent between 2000 and 2008, and Alzheimer's is the only cause of death among the top 10 in America without a way to prevent, cure, or even slow its progression.
Should a person reach 85, one out of two will fall into the chasm of this disease. So, assuming you have a meaningful other, either you will have Alzheimer's and he will be taking care of you or you will be taking care of him -- feeding, bathing, toileting, etc.
Alzheimer's is three times as costly to Medicare/Medicaid; it will bankrupt our country. It is our economic pandemic. Now is the time to invest -- later will be too late. Clearly, there's a strong case, yet so many policymakers just don't get it. Maybe they have to be that way -- like a doctor has to distance herself from the fact that her patient -- the 6-year-old moppet sitting across from her -- has inoperable brain cancer. This physician may have ways to prolong a life, but not a lifetime.
On the other hand, a government official can help to save a generation by allocating more money for research.
Starting this year, more than 10,000 baby boomers everyday will turn 65. As these baby boomers age, one out of eight of them will develop Alzheimer's -- a disease which takes prisoners and all of them are on death row. No warden is called to stop it. But before it kills, it takes the victim and the victim's victims -- the family -- down a long road of heartbreak, despair and financial drain. There's a lot going on behind those doors.
I urge our elected and Administration officials to choose door 3. That door opens up to hope and possibility. That box is filled with research -- lots of research - which is the only option we have to avert this merciless disease.
How can we focus the Administration and Congress on the need for this research? Here's one way: http://www.alz.org/join_the_cause_advocacy.asp
I also have way too much first hand experience with this dreadful disease.
But sadly, unless a person has up close and personal knowledge of the toll Alzheimer's takes, it just does not compute with them. Not sure if they are scared of getting it (which I think is the case of baby boomers) or what. You really have to walk a mile in the shoes of an Alzheimer's loved one or a person with the disease to grasp a deep understanding.
I pray for a cure or at least much better treatment in the very near future. Until then, we need to work as a community to find a more demonstrative way to show people what is like to live with Alzheimer's. Facts and figures are impactful but there has to be a way to really hit people upside the head to make them understand that this is real epidemic.
And --
Have lived thru this in my family -- and written a new novel about a grandmother with Alzheimers who bonds with her granddaughter: THE BIRD HOUSE. ("Complex and poignant" -- Publishers Weekly.)
With a good dose of public education about the many causes of memory loss and the importance of early intervention, we could reduce stigma associated with dementia, and facilitate constructive discussions about memory loss between patients and their primary care physicians. With a good dose of physician education, we could better equip them to distinguish age-related memory concerns from those that should be more thoroughly evaluated. This would facilitate earlier intervention and more effective treatment for all causes of memory loss, including Alzheimer's disease.
We discuss this theme regularly at the Brain Today blog: www.BrainToday.com
the costs involved to do nothing really outweigh the costs for research. Alzheimer's disease has the ability to cripple this country all by itself. I suspect that only when these politicians are affected by the disease themselves will they get involved. On that aspect it's only a matter of time before they are. Trish your article has inspired me and I'm going to let our members know of your monumental efforts. To learn more about the Alzheimer's Research Association Please visit: http://www.alzheimersresearchassociation.com/ or our blog at: http://alzra.org/wordpress/
Thanks again Trish, you have made my day.