Alzheimer’s Advocates have cause to celebrate with the presidential endorsement of the National Alzheimer’s Project Act (NAPA). Why is this Act so important and why have advocates put so much effort into a national coordinated effort to staunch the Alzheimer’s tsunami headed our way?
Aging baby boomers. Age is the No. 1 risk factor of Alzheimer’s and statically speaking the aging baby boomers drastically increase those at risk for Alzheimer’s. For the next 19 years, Boomers turn 65 at the rate of 10,000 per day! By 2050 the care cost of Americans with Alzheimer’s will skyrocket from the current $172 billion to $1 trillion.
What is the purpose of NAPA? According to my 2010 Alzheimer’s Action Summit Advocate’s Guide, NAPA will—
• Launch a campaign within the federal government to overcome Alzheimer’s disease.
• Establish an inter-agency Advocacy Council to create a coordinated National Alzheimer’s Disease Plan
• Comprehensively address the federal government’s efforts on Alzheimer’s research, care, institutional services, and home- and community-based programs.
• Accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s disease.
• Decrease health disparities by ensuring ethnic and racial populations at higher risk for Alzheimer’s receive much-needed care and services
In a time when we worry about the national debt, finding effective treatment or a cure for Alzheimer’s disease is more important than ever. For each person with Alzheimer’s, Medicaid costs are 9 times higher and Medicare payments are 3 times higher.
I have been an advocate for more than a decade. I don’t suppose I would have ever bothered to put so much time, effort, money, and passion into such a cause if I hadn’t personally seen the destruction caused by dementia. When Jim was diagnosed with an Alzheimer’s type of dementia, it changed both our lives, and the lives of our extended family and network of friends. Living with dementia is something our minds cannot comprehend if we don’t have that personal involvement.
The thought of having a 50/50 chance of developing Alzheimer’s for those who live to be 85 should be cause for concern for anyone who hopes to live a long, healthy life. Other rarer types of dementia show up in much younger people. Jim was 49 when he developed corticobasal degeneration. Younger people develop frontotemporal dementia and can develop Alzheimer’s, especially the hereditary form.
Alzheimer’s should concern all of us. It’s not just a disease of the elderly that involves some forgetfulness. It’s not a joke for late-night TV. It is a devastating, fatal brain disorder that is financially and emotionally draining for the entire family. It is a time of ongoing loss and sadness and a disease I wouldn’t wish on my worst enemy.
NAPA means this country has finally recognized that Alzheimer’s needs aggressive action tempered by a comprehensive plan. Unless we use adequate resources to find a cure for Alzheimer’s, we face our future with trepidation.
The Alzheimer’s Association credits 300,000 advocates for passing NAPA. More than five million Americans have Alzheimer’s. Think how much more progress we could make if each person with Alzheimer’s had one family member who became an advocate. If that were the case, the tsunami would be millions of people concentrating their efforts on finding a cure for Alzheimer’s now, not at some unforeseeable time in the future.
Copyright Jan. 2011, L. S. Fisher
http://earlyonset.blogspot.com/
sources: www.alz.org
Alzheimer’s Action Summit 2010 “My Experience, Our Voice” Advocate’s Guide
Showing posts with label NAPA. Show all posts
Showing posts with label NAPA. Show all posts
Sunday, January 9, 2011
Monday, December 20, 2010
A Letter to the President: Sign the National Alzheimer’s Project Act
For the first time, I wrote a letter to the President of the United States! I asked him to sign the National Alzheimer’s Project Act (NAPA). It’s not that I never had anything to say to the President before, but no issue ever motivated me enough to actually write. Besides, you always know he isn’t going to read his letters anyway. I’m sure he isn’t too concerned about one person’s opinion, but if he gets a million emails sent to him, they will be a nudge in the right direction.
This Act has been in the works since 2007. During our legislative visits at the 2010 Alzheimer’s Advocacy Forum my granddaughter, my friend Cindy, and I talked to our representatives and senators to ask them to support NAPA. After 1,000 advocate meetings, 50,000 emails, 10,000 phone calls, and 110,000 signatures gathered during the Alzheimer’s Breakthrough Ride, both the Senate and House of Representatives passed the bill establishing NAPA.
NAPA will be a coordinated effort to use our resources on research for a cure and effective treatment, provide appropriate home, clinical, and institutional care for the 5.3 million persons with Alzheimer’s, improve community based programs, and support for families. In my opinion, NAPA is the most important legislative act for families who are struggling with an Alzheimer’s diagnosis.
After a series of tests, a doctor told my forty-nine-year-old husband that he had early-onset dementia.
“What would cause that?” I asked.
"Most likely Alzheimer’s,” the doctor said.
We didn’t know much about Alzheimer’s at the time, but I can tell you from personal experience that it is a devastating diagnosis. There are no words to describe the heartbreak of knowing your loved one has an incurable brain disease that will rob him of his abilities, personality, memories, and eventually his life.
By 2050, without a cure for Alzheimer’s, an estimated 16 million Americans can hear the same bleak diagnosis. Age is the No. 1 risk factor for Alzheimer’s and as the Baby Boomers age, more people will be at risk than ever. NAPA does not guarantee a cure, but it is definitely a step in the right direction. Alzheimer’s has never received the attention of diseases like AIDS or cancer. What good will it do to cure other diseases to find ourselves at a 50% chance of developing Alzheimer’s once we reach 85 years old? I don’t know about you, but I hope to be able to recognize my children, grandchildren, and great-grandchildren as long as I live.
Jim died in 2005 at fifty-nine years old after ten years with corticobasal degeneration, an Alzheimer’s type of dementia. Today would have been our 41st wedding anniversary had dementia not cut his life short.
I wrote my letter to the President because of Jim, and I’m sure your loved ones are worth the few minutes it takes to go to www.alz.org and send a letter to the President in support of NAPA.
Copyright © December 2010, L. S. Fisher
http://earlyonset.blogspot.com
This Act has been in the works since 2007. During our legislative visits at the 2010 Alzheimer’s Advocacy Forum my granddaughter, my friend Cindy, and I talked to our representatives and senators to ask them to support NAPA. After 1,000 advocate meetings, 50,000 emails, 10,000 phone calls, and 110,000 signatures gathered during the Alzheimer’s Breakthrough Ride, both the Senate and House of Representatives passed the bill establishing NAPA.
NAPA will be a coordinated effort to use our resources on research for a cure and effective treatment, provide appropriate home, clinical, and institutional care for the 5.3 million persons with Alzheimer’s, improve community based programs, and support for families. In my opinion, NAPA is the most important legislative act for families who are struggling with an Alzheimer’s diagnosis.
After a series of tests, a doctor told my forty-nine-year-old husband that he had early-onset dementia.
“What would cause that?” I asked.
"Most likely Alzheimer’s,” the doctor said.
We didn’t know much about Alzheimer’s at the time, but I can tell you from personal experience that it is a devastating diagnosis. There are no words to describe the heartbreak of knowing your loved one has an incurable brain disease that will rob him of his abilities, personality, memories, and eventually his life.
By 2050, without a cure for Alzheimer’s, an estimated 16 million Americans can hear the same bleak diagnosis. Age is the No. 1 risk factor for Alzheimer’s and as the Baby Boomers age, more people will be at risk than ever. NAPA does not guarantee a cure, but it is definitely a step in the right direction. Alzheimer’s has never received the attention of diseases like AIDS or cancer. What good will it do to cure other diseases to find ourselves at a 50% chance of developing Alzheimer’s once we reach 85 years old? I don’t know about you, but I hope to be able to recognize my children, grandchildren, and great-grandchildren as long as I live.
Jim died in 2005 at fifty-nine years old after ten years with corticobasal degeneration, an Alzheimer’s type of dementia. Today would have been our 41st wedding anniversary had dementia not cut his life short.
I wrote my letter to the President because of Jim, and I’m sure your loved ones are worth the few minutes it takes to go to www.alz.org and send a letter to the President in support of NAPA.
Copyright © December 2010, L. S. Fisher
http://earlyonset.blogspot.com
Subscribe to:
Posts (Atom)