Alzheimer’s Action Summit

For the eleventh time, I made the trip to Washington DC to add my voice to other Alzheimer’s advocates. For the second time my granddaughter went with me.

We were at the airport Saturday morning for our 6:30 AM flight and arrived in DC mid-morning. While we waited for our room to get ready, we rode the Old Town Trolley down to the mall and toured the Museum of Natural History. Sunday, we visited the national zoo to admire the pandas, elephants, apes, and reptiles. Considering the forecast, the weather turned out to be fantastic.

Sunday evening the Summit began with the roll call of the states and a representative from each state told about their accomplishments in the past year. After the roll call, we learned a storm was coming in and the candlelight rally would be held at the hotel.

During the rally, several people spoke, but one that stood out the most for me was twenty-two-year-old Keri Roaten, caregiver for the grandmother that raised her. Just like caregivers twice her age, or even four times her age, Keri’s life has been put on hold. While each caregiver sacrifices many other events in life, it seemed particularly poignant to me that Keri missed activities that most teenagers take for granted. She missed her prom and her college dreams were put on hold. We held our candles high in remembrance and tribute for Keri’s grandmother and for loved ones living with the disease and for those whose journeys have ended.

The first time I lit a candle at the vigil, I had just placed Jim in a nursing home. I was plagued with doubts, fears, and anxiety. Five years later in 2005, I lit my candle only a few short weeks after our journey ended. This year, my heart ached and my eyes burned at the raw emotion of those were at an emotional crossroads.

Monday was a full day that  began at 7 AM and ended at 10 PM. We heard Newt Gingrich, a longtime supporter, share his concern about the economic future of this country when, without effective treatment or a cure, Alzheimer’s will cost the American Government $20 trillion between now and 2050. Gingrich is optimistic that the scientific community will have a breakthrough if we invest in Alzheimer’s research. During lunch, Melody Barnes, domestic policy advisor to the President, spoke of President Obama’s serious attention to the fight against Alzheimer’s. She considers the National Alzheimer’s Project Act a step to further research and awareness.

The Summit culminates with legislative visits. We met with the health aides for our senators and our representative to discuss our legislative issues. Senator Blunt dropped by for a photo op.

This year we had a two-fold mission: the Alzheimer’s Breakthrough Act and the HOPE for Alzheimer’s Act. We used a new approach on the Alzheimer’s Breakthrough Act. Rather than asking for a dollar amount for research, we asked for research funding to be driven by what the scientific community deemed necessary to make significant progress. The HOPE for Alzheimer’s Act covers three areas: (1) Early and Accurate Diagnosis, (2) Care Planning that ensures caregivers know all available resources, and (3) Medical Record Documentation.

My granddaughter and I were tired by the time we headed to the airport for our trip home. I hope that someday we can make the trip to Washington, DC, just to sightsee. My wish is for the day Alzheimer’s is one of those diseases that people “used to have” but has been wiped from the face of the earth. Until then, I’ll pack my bags once a year to become a VOICE for those with Alzheimer’s and their caregivers.

Copyright © May 2021 by L. S. Fisher
http://earlyonset.blogspot.com/

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President Signs National Alzheimer’s Project Act

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

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My Experience, Our Voice

Once again I made my annual pilgrimage to Washington, DC, and joined other advocates to bring our message to Capitol Hill. This year my friend, Cindy, and my granddaughter went with me. We went a few days early to visit the magnificent museums and monuments scattered throughout our capitol city.

Of all the sights in DC, the Vietnam Memorial touches me the most. About twenty years ago, Jim and I went to Washington, DC, on a business trip. Jim had seen the memorial on TV, and being a Vietnam veteran, it was at the top of his “must see” list. We walked hand-in-hand past the memorial that first time, tears streaming down our faces, overwhelmed at the sight of the Wall. The simple, yet majestic, glossy, black granite wall is inscribed with 58,261 names, each representing a life lost.

For the past ten years, I’ve made the trip to Washington, DC, without Jim, but I feel his presence with me, especially when I visit the Wall. Each time I touch its surface, the tears flow for all those lives lost, and for others destroyed by Vietnam—for the wounded in spirit as well as in body.

Vietnam was a burden that rested heavy on Jim’s soul. He struggled with depression verging on despair. Still, he found solace and healing through his musical talent. The most unfortunate symptom of Jim’s dementia was when his smooth singing voice was silenced. I became an Alzheimer’s advocate and his voice by proxy.

A record number of advocates attended the Alzheimer’s Action Summit this year. An alarming number of those with the disease have younger onset. It may be that younger people are more motivated to take on the insurmountable challenges of a disease that many of them never imagined would affect them.

Each of us comes to Washington, DC, from different backgrounds with different stories, or experiences. We came with "One Voice" and a focused approach to bring Alzheimer’s out of the shadows and into the light—hopefully, the spotlight. While mortality from stroke, HIV, heart disease, prostate and breast cancer has decreased in the period of time from 2000-2006, Alzheimer’s deaths have increased by 46.1%. What is the difference? We have focused on those diseases and funded research to find effective treatments.

Alzheimer’s funding in 2009 was $469 million, plus $77 million from the American Recovery and Reinvestment Act. This is far short of the billions spent each year on other major diseases. Without the investment in research, we will never have the payout of success.

Each of us can make a difference by becoming an advocate. If you weren’t able to make it to the Summit, you can still add your voice to the more than 600 advocates who stormed Capitol Hill with the Alzheimer’s message. Pick up the phone and call, or email your legislators, to ask them to support and co-sponsor:

· The Alzheimer’s Breakthrough Act (S. 1492, H.R. 3286). Alzheimer’s research would become a priority of the National Institutes of Aging and funding established at $2 billion. It would also include a study of the unique problems facing those with younger-onset dementia.

· Alzheimer’s Detection, Diagnosis, Care, and Planning Act will help expedite diagnosis and bundle services to ensure care planning to maintain quality of life. It is estimated that currently less than half of the people with dementia have been diagnosed.

· The National Alzheimer’s Project Act (S. 3036, H.R. 4689) would create a National Alzheimer’s Disease Plan. Currently 5.3 million Americans have Alzheimer’s and without a cure as many as 16 million will have the disease by mid-century.

Alzheimer’s is an expensive disease. Medicare costs are six times higher for a person with Alzheimer’s, Medicaid is a staggering nine times higher, and private insurance costs are 26% more. The monetary cost doesn’t even come close to the emotional toll this disease takes on the entire family when a beloved relative develops dementia. Share your experiences so that our voices will be heard.

copyright (c) 2010 L. S. Fisher
http://earlyonset.blogspot.com

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We Shall Overcome

Tonight at the Alzheimer’s Action Summit Candlelight Vigil more than six hundred voices sang “We Shall Overcome.” Accompanied by an acoustic guitar and with candles held high, the sheer grit and determination of the advocates makes overcoming Alzheimer’s seem more a palpable possibility that just a lofty goal.

Steve spoke of living with Alzheimer’s. How we need to use our voices to deliver a firm message that Alzheimer’s is the seventh leading cause of death. It is time to stop accepting crumbs that fall from the table. The time of polite asking has come to an end.

David Hyde Pierce motivated us to make our VOICE heard at the Capitol, the White House, and across the nation. Those of us at the Candlelight Rally were joined by more than 10,000 virtual candles.

This is the tenth time I’ve lit my candle at the vigil. Something seemed different this time. Maybe it’s something as subtle as the name change from Public Policy Forum to Action Summit. Maybe it’s because we didn’t just have a vigil, we experienced a rally. Whatever the difference, the determination and spirit of this group makes me think we really shall overcome.

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