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 advocates. Show all posts
Showing posts with label advocates. Show all posts
Sunday, January 9, 2011
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
http://earlyonset.blogspot.com
http://boomerobics.blogspot.com
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
http://earlyonset.blogspot.com
http://boomerobics.blogspot.com
Saturday, March 14, 2009
Missouri Advocates at State Capitol for Memory Day
I am an Alzheimer’s Advocate and participate in Memory Day at the state capitol in Jefferson City. Wednesday, I made my annual trip to speak to my legislators. My sister-in-law, Ginger, went with me this year.
The biggest challenge of Memory Day is finding a place to park. How every parking space within miles of the state capitol can be full is a mystery to me. I looked for parking place close to the Truman Building. My first mistake was trying to go in the entrance that is now barricaded with pylons to discourage terrorists, I suppose. I went around the block only to discover the other side had only an exit. I shot across a bridge to nowhere, turned around in a parking lot, and drove back around the block.
I trolled the parking lot while Ginger kept a sharp eye out for an empty slot. After cruising all around, we exited that parking lot and entered the one across the street for a more realistic chance. Finally, in the second to last row, we found an empty parking place. With perfect positioning, we were able to exit the car without stepping into the lake-size mud puddle that surrounded the front half of the car.
My cell phone rang just as I hopped over the puddle. It was Ike Skelton’s office setting up a time for our visit during the Public Policy Forum in Washington, DC. I juggled my bag and wrote the time in my calendar.
A March wind gusted around us as we headed toward the capitol building. Ginger and I wore pictures of Jim over our hearts. In the photo, Jim wears his Stetson and looks like a movie star or country-western recording artist.
After a short training session, we found a seat in the rotunda for the ceremony. The ceremony opened with a “Hello” song and drummers. After the awards and recognition, we began our legislative visits. We made a statement by donning purple “Alzheimer’s Association” sashes. It’s really hard to ignore 240 people wearing “beauty queen” sashes!
During our visits, the senate debated and passed SB176 which calls for the creation of a Missouri Alzheimer’s State Plan Task Force. This Task Force will assess the current and future impact of Alzheimer’s disease and examine the resources available for families affected by dementia. After their assessment, the Task Force will develop and implement recommendations to help Missourians take a proactive approach to make life better for the 110,000 Missourians with dementia, their caregivers, and families.
Our other objective is to maintain funding for Alzheimer’s Service Grants. The grants help the four Missouri Chapters continue with their important mission to provide services and support to families who are on the Alzheimer’s journey.
I consider myself to be a poster child for these services. Respite funds provided by the Mid-Missouri Chapter were my only financial support while Jim lived at home. The Alzheimer’s support group and educational programs helped me be a better caregiver. As a person who’s been there and done that, I know the life-changing possibilities of the $539,000 service grants. These grants save Medicaid dollars by delaying admittance to expensive nursing homes. As advocates we asked our senators and representatives to support these two priorities.
We make a difference when we share our personal stories with our legislators. The heart of Memory Day isn’t about politics, it’s about the people we know and love who are living with dementia, and our living memories of the ones lost to the disease.
The biggest challenge of Memory Day is finding a place to park. How every parking space within miles of the state capitol can be full is a mystery to me. I looked for parking place close to the Truman Building. My first mistake was trying to go in the entrance that is now barricaded with pylons to discourage terrorists, I suppose. I went around the block only to discover the other side had only an exit. I shot across a bridge to nowhere, turned around in a parking lot, and drove back around the block.
I trolled the parking lot while Ginger kept a sharp eye out for an empty slot. After cruising all around, we exited that parking lot and entered the one across the street for a more realistic chance. Finally, in the second to last row, we found an empty parking place. With perfect positioning, we were able to exit the car without stepping into the lake-size mud puddle that surrounded the front half of the car.
My cell phone rang just as I hopped over the puddle. It was Ike Skelton’s office setting up a time for our visit during the Public Policy Forum in Washington, DC. I juggled my bag and wrote the time in my calendar.
A March wind gusted around us as we headed toward the capitol building. Ginger and I wore pictures of Jim over our hearts. In the photo, Jim wears his Stetson and looks like a movie star or country-western recording artist.
After a short training session, we found a seat in the rotunda for the ceremony. The ceremony opened with a “Hello” song and drummers. After the awards and recognition, we began our legislative visits. We made a statement by donning purple “Alzheimer’s Association” sashes. It’s really hard to ignore 240 people wearing “beauty queen” sashes!
During our visits, the senate debated and passed SB176 which calls for the creation of a Missouri Alzheimer’s State Plan Task Force. This Task Force will assess the current and future impact of Alzheimer’s disease and examine the resources available for families affected by dementia. After their assessment, the Task Force will develop and implement recommendations to help Missourians take a proactive approach to make life better for the 110,000 Missourians with dementia, their caregivers, and families.
Our other objective is to maintain funding for Alzheimer’s Service Grants. The grants help the four Missouri Chapters continue with their important mission to provide services and support to families who are on the Alzheimer’s journey.
I consider myself to be a poster child for these services. Respite funds provided by the Mid-Missouri Chapter were my only financial support while Jim lived at home. The Alzheimer’s support group and educational programs helped me be a better caregiver. As a person who’s been there and done that, I know the life-changing possibilities of the $539,000 service grants. These grants save Medicaid dollars by delaying admittance to expensive nursing homes. As advocates we asked our senators and representatives to support these two priorities.
We make a difference when we share our personal stories with our legislators. The heart of Memory Day isn’t about politics, it’s about the people we know and love who are living with dementia, and our living memories of the ones lost to the disease.
Saturday, February 16, 2008
Alzheimer's Advocates
On Memory Day, hundreds of Missouri advocates will converge on our state capitol to urge our senators and representatives to support legislation to help our fellow Missourians with Alzheimer’s and their families. On March 12, Missouri advocates will distribute copies of Alzheimer's Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer's to our state legislators.
As a long-time advocate, I know personal stories make a greater impact on legislators than statistics. The book contains 37 true stories, but even if legislators read only the title, they will realize that 110,000 Missourians are living with dementia.
Many books have been written about Alzheimer’s, but this type of anthology gives a rare opportunity to show how the disease affects families from different points of view. This book brings to life the challenges of living with dementia and shows the courage of persons with dementia and their families as they adjust their lives to accommodate dementia.
Now, the Early Onset Book Project seeks submissions for a book devoted to young onset dementia. This is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. This book will be formatted much like the Missouri book with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles.
Writers do not need to be professionals! In fact, stories written by the primary caregiver or the person with dementia are the most compelling. I will edit stories, if necessary, before submitting them to the judges. The deadline is June 30, but I certainly hope most stories are submitted well in advance of the deadline so proper editing will give them the best chance of being selected for the book.
The Alzheimer’s Association estimates that approximately 500,000 Americans have dementia that began before age 65. My vision is that the Early Onset Dementia book will make a huge impact on legislators at every state level and in Washington, DC.
One definition of advocate is, “A person who pleads on behalf of another.” Your compelling slice-of-life stories help convince legislators of the need for increased National Institute of Health research funds to find a cure for Alzheimer’s.
Are you an Alzheimer’s advocate? If you aren’t, you should consider becoming one by sharing your story with this project.
As a long-time advocate, I know personal stories make a greater impact on legislators than statistics. The book contains 37 true stories, but even if legislators read only the title, they will realize that 110,000 Missourians are living with dementia.
Many books have been written about Alzheimer’s, but this type of anthology gives a rare opportunity to show how the disease affects families from different points of view. This book brings to life the challenges of living with dementia and shows the courage of persons with dementia and their families as they adjust their lives to accommodate dementia.
Now, the Early Onset Book Project seeks submissions for a book devoted to young onset dementia. This is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. This book will be formatted much like the Missouri book with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles.
Writers do not need to be professionals! In fact, stories written by the primary caregiver or the person with dementia are the most compelling. I will edit stories, if necessary, before submitting them to the judges. The deadline is June 30, but I certainly hope most stories are submitted well in advance of the deadline so proper editing will give them the best chance of being selected for the book.
The Alzheimer’s Association estimates that approximately 500,000 Americans have dementia that began before age 65. My vision is that the Early Onset Dementia book will make a huge impact on legislators at every state level and in Washington, DC.
One definition of advocate is, “A person who pleads on behalf of another.” Your compelling slice-of-life stories help convince legislators of the need for increased National Institute of Health research funds to find a cure for Alzheimer’s.
Are you an Alzheimer’s advocate? If you aren’t, you should consider becoming one by sharing your story with this project.
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