MOVE. VOICE. OPEN. BLOG. Share your story! Your experiences caring for someone with Alzheimer's, or working toward Alzheimer's funding and awareness can be so helpful to others. Blog it out and know that you're being heard every step of the way.
In honor of Black History Month, the Alzheimer's Association recognizes African-Americans who have helped lead the fight against Alzheimer's. These Champions have furthered research for prevention and a cure; made strides in care and support; and raised awareness of Alzheimer's disease.
Solomon Carter Fuller, MD
Solomon Carter Fuller, M.D., was among the first known black psychiatrists and a pioneer among Alzheimer's Champions. The grandson of a slave, Dr. Fuller worked along side Dr. Alois Alzheimer, who discovered the traits of the disease in 1901. Dr. Fuller is responsible for countless contributions to the field as a researcher and educator. The Solomon Carter Fuller Mental Health Center in Boston is named in his honor.
This week President Obama delivered his first State of the Union to Congress, which highlighted the ongoing health care reform debate on Capitol Hill.
As this debate carries on, the Alzheimer's Association will continue to work tirelessly to ensure that, as Alzheimer’s advocates, your voice is heard in Washington. Now is not the time to rest, but to continue our commitment to passing reform that works for families affected by Alzheimer’s.
Please take a moment to find out more about our healthcare reform priorities here.
Each year, hundreds of Alzheimer advocates – people with the disease, caregivers, and family members – from across the nation come to Washington, DC to hone their advocacy skills and then share their perspectives, experiences, and recommendations in meetings with their elected representatives. A unique platform of information sharing and learning, the Alzheimer Action Summit truly represents the best of civic engagement in the American political process.
We are pleased to announce our agenda for 2010 includes remarks from veteran political strategist, author and educator Donna Brazile. In addition to gracing several national publications’ “most powerful lists,” Brazile is also the recipient of the Congressional Black Caucus Foundation’s highest award for political achievement. A syndicated columnist and political analyst, Brazile was the first African American woman to manage a presidential campaign in 2000 for then Vice President Al Gore. This seasoned politico, best-selling author and regular CNN and NPR contributor will offer attendees invaluable insights about grassroots advocacy from her extensive experience in local, state and national politics.
Please visit alz.org/summit for more information, and to register today.
Mike Splaine, Director of State Policy and Advocacy Programs, recently traveled to India to meet with the Alzheimer’s and Related Disorders Society of India. Mike shares some of his experiences about the trip below.
It is hard to imagine meeting the challenge of Alzheimer’s disease in a developing country with limited infrastructure. Alzheimer’s and Related Disorders Society of India (ARDSI) is doing just that. I had the privilege of joining our colleagues from ARDSI as guest faculty for their annual conference in Kolkata and then in Delhi for the final consultation meeting to design a national Alzheimer strategy for India.
The theme of the meetings was building dementia “solidarity”:
* Solidarity within the Alzheimer community that has slowly developed in India in the past 17 years of scattered local organizations across a sub continent.
* Solidarity between sectors of the community such as researchers, caregivers and hospitals.
* Solidarity to work together with other non-governmental organizations and government to craft a real strategic approach to the challenge of dementia.
India is huge—1.5 billion people (and 500 million cell phones), and diverse culturally, medically, and socially. It is the epicenter of the rapidly growing challenges of Alzheimer’s disease – by 2020 an estimated doubling of persons affected, to over 6 million. This reflects global trends. We estimate that 60% of persons with AD worldwide will live in a developing country by 2020.
I shared some of our U.S. story with state Alzheimer plans and also our tools and experience in building an approach to advocacy and public policy. Though India is a democratic nation like ours, political traditions and conventions are surprisingly different.
The local leaders were hospitable to a fault, friendly and – like Alzheimer advocates I have met all over this country – passionate and committed. That said, every time I got comfortable I was reminded of just how a different a place India is. For example only 2% of persons of 60 have any health insurance – and almost all of these have just hospital coverage and it is derived from their children putting them on a work based family plan!
The final product of these deliberations will be an India AD report to be released next fall, with facts, faces, promising practices and action recommendations. This will be a first from a developing nation. You can read more about ARDSI at http://ardsi.org.
Mike Splaine with P.G. Datta Ray of the Alzheimer’s and Related Disorders Society of India – Calcutta Chapter.
All of us can do what Kate has done. Talk to your friends, family, and co-workers. Write to your local papers and tell them why Alzheimer’s needs to be a national priority. Call the district office of your congressman and explain the impact this disease has had on your loved ones. It’s the many voices that together that will make the difference. Each conversation, each call, each letter matters.
Best of all, register to join us in Washington, DC for the Advocacy Forum. We’ll train together as advocates, discuss what needs to be done and how to make the case, and then we’ll do it. On the last of the three days, we’ll head to the Hill and make our case directly to our Senators and Representatives in Congress. Our advocates consistently tell us what a rewarding time they have meeting new friends and advancing a cause that means so much to them.
Learn more about the Advocacy Forum or sign up today! Together we can take action and change the course of this disease.
When the Breakthrough Act was introduced in 2007, it took 19 months to gain 92 cosponsors and the bill was never brought to a vote.
The Alzheimer’s Breakthrough Act (S.1492/H.R.3286) was reintroduced in July. Over the last five months, efforts by Alzheimer advocates have helped bring 101 cosponsors to support this bill.
Although we still have a long way to go in the process of the Breakthrough Act becoming law, we need to keep up the momentum to add more cosponsors to this bipartisan bill.
It’s a busy time in Washington. In addition to health care reform, Congress is busy finishing the Appropriations bills in both the House and the Senate.
We want to make sure the bills include funding for Alzheimer’s disease research at the National Institutes of Heath (NIH) and funding for the Healthy Brain Initiative at the Centers for Disease Control (CDC).
We had the privilege this week of visiting with some outstanding Alzheimer’s advocates from Bucknell University in Pennsylvania – the Beta Mu Chapter of the Tau Kappa Epsilon Fraternity.
On Columbus Day, these students completed their annual Reagan Run, in honor of Ronald Reagan, one of their more famous brothers. The run took them from the steps of their campus to the front lawn of the White House. For more information on the Ronald Reagan Run for Alzheimer's click here.
They brought with them not only $20,000 for Alzheimer’s research, and the promise of more on the way, but also a commitment to advocacy. They are gathering signatures from their fraternity at this moment in support of the Alzheimer’s Breakthrough Act (S. 1492/H.R. 3286), which we will present to the four Tau Kappa Epsilon brothers who are currently members of Congress.
Thanks to Tau Kappa Epsilon for an outstanding example of the vision, enthusiasm and commitment that provide the foundation for every successfully advocacy campaign.
Please take a moment to add your own voice to the campaign for passage of the Alzheimer’s Breakthrough Act by asking your member of Congress to sign on as a cosponsor if you have not done so already.
As 78 million American baby boomers age, the prevalence of Alzheimer's disease will skyrocket. Economically, it has the potential to bankrupt an already fragile health care system. Socially, we have yet to overcome much of the stigma associated with it. In terms of basic knowledge and research, Alzheimer's is progressive, it is fatal, and there is currently no cure for it.
Despite these sobering facts, great progress is being made in the discovery of Alzheimer's causes and treatments. This progress must continue. To ensure that critical research funding becomes and remains a priority, we must all raise awareness about this disease. We must hear from even more Alzheimer advocates, including people living with the disease, their friends and family, public servants, celebrities and the entertainment industry.
This year, HBO Documentary Films and First Lady of California Maria Shriver were on the forefront of this awareness effort with "The Alzheimer's Project." The Alzheimer's Association would like to applaud and congratulate all those involved in the creation of these films on winning two Creative Arts Emmy awards. "The Memory Loss Tapes," which shadows seven individuals living in various stages of Alzheimer's, won for Exceptional Merit in Nonfiction Filmmaking; and "Grandpa, Do You Know Who I Am? with Maria Shriver," which captures what it means to be a child or grandchild of someone with Alzheimer's, won for Outstanding Children's Nonfiction Program. Both of these films revealed the realities of Alzheimer's disease, sparking conversations in living rooms nationwide and at more than 110 Alzheimer's Association community screenings.
Shriver, who served as an executive producer on the series and is a passionate voice for her own father and all those living with the disease, deserves special recognition. In addition to "The Alzheimer's Project" and numerous other advocacy activities, Shriver has testified before Congress as a compelling witness of the physical, emotional and financial devastation of this disease. Shriver's presence at Alzheimer's Association events from candlelight vigils to galas is felt and appreciated by the 5.3 million Americans living with Alzheimer's and their 10 million caregivers.
Yesterday, September 21, 2009, was World Alzheimer's Day and the Alzheimer's Association would like to thank all Alzheimer's Champions committed to the fight against Alzheimer's. An American develops Alzheimer's every 70 seconds. Now is the time to follow the lead of Shriver and all of the partners in the HBO documentary by joining the cause at www.alz.org.
One way the Alzheimer’s Association is marking this day is through the release of the 2009 World Alzheimer Report. The report shows that the number of people with Alzheimer’s and other dementias is rising substantially worldwide. The impact on families, governments, and national healthcare systems will be immense, and it is essential that governments respond to this significant global public health threat now.
The Alzheimer's Breakthrough Act of 2009 (S. 1492/H.R. 3286), introduced in the Senate by Senators Barbara Mikulski (D-MD) and Christopher "Kit" Bond (R-MO) and in the House by Representatives Edward Markey (D-MA) and Christopher Smith (R-NJ), seeks to increase funding for Alzheimer’s at the National Institutes of Health (NIH) to $2 billion which would be a significant step in restoring momentum in the pursuit of better diagnosis, prevention and treatment.
The legislation also creates a National Summit on Alzheimer's, which would bring together researchers, policymakers and public health professionals to discuss the latest promising research avenues in Alzheimer's disease.
Watch this clip from the TODAY Show interview with Alzheimer’s Association President and CEO Harry Johns and actor and Alzheimer Champion David Hyde Pierce:
The following is the story of an actual Tailgate to Tackle Alzheimer's event, which raised money to support the Alzheimer's Association.
Wow, what a game. I knew that watching my favorite college football team was going to be a blast but luckily we were able to also turn it into something good. This past fall we hosted a Tailgate to Tackle Alzheimer’s event before and after our game. We combined our usual gathering of friends and family with a chance to take action against Alzheimer’s. We were able to collect donations, register advocates and share the importance of bringing awareness about this devastating disease. It was easy. We received the supplies needed from the association, combined it with our own purple party favors and created an environment for having fun all while benefiting a great cause. So step up, take action and join me again this fall as we Tailgate to Tackle Alzheimer’s. I look forward to seeing your event at your local parking lot this fall.
This weekend wraps up a month of in-district action where advocates asked our federal officials to pass health care reform this year that includes long-term services and supports for people with Alzheimer’s and to co-sponsor the Alzheimer’s Breakthrough Act.
I want to personally thank the thousands of advocates who carried our messages into town hall meetings and district offices. Our Washington, DC staff will follow up on all of your efforts.
Congress returns to Capitol Hill after Labor Day to move forward with health care reform legislation in September with a goal of finishing the process by the end of October. Keep an eye out for more on the progress of our priority issues in the weeks to come.
One final point – Advocacy in August wasn’t just about Congress. In this account, Liz McConnell reflects on her advocacy on behalf of Alzheimer’s with the President.
“Since attending the Obama Town Hall Meeting in Portsmouth, New Hampshire I continue to have hope. I saw hope in the faces of most of the general public who attended, the Obama staff, volunteers and the President himself. Those attending are hoping for reform of the healthcare system, and my hope is that reform will include changes in attitudes and policy regarding long-term care and increases in research funding for Alzheimer's Disease.
I came to the event as a volunteer, but also as an advocate. I want people to think broadly about healthcare reform, and include Alzheimer’s disease in that equation. I spent the first hour before my volunteer duties began distributing purple ‘Stop Alzheimer’s Now’ stickers to the waiting crowd. Inevitably, people tell me their stories of loved ones diagnosed or lost to Alzheimer’s. When they tell me their stories, they make connections with changes that must occur, and often talk about their fears of the increase in numbers of people who will be diagnosed. Without a change in the system, their fear is that they might one day be a part of those greater numbers of people diagnosed in a broken healthcare system.
During the event, there was one question relating to Medicare and the savings the administration is hoping to gain through greater efficiencies within the system to help pay for part of the cost of healthcare reform. There was concern expressed that the savings would be gained through taking away currently offered services. President Obama made assurances that the cost savings will come from efficiencies and not cuts in service.
As an advocate, I want to make sure the President keeps that promise. Alzheimer’s disease should be foremost in his mind when it comes to reform. My opportunity to remind the President of that came at the end of the event. When the President shook my hand I held onto his right hand and placed a purple ‘Stop Alzheimer’s Now’ sticker in his left hand. He put the sticker in his pants pocket.” Who knows what he thought when he pulled that sticker out later? I like to think he spent at least a couple moments thinking about what can be done to do just that: “Stop Alzheimer’s Now”.
So, advocacy is critical to our success. But it’s also often fun, and surprisingly straightforward. If we all engage in Advocacy, we will much sooner get to our vision of “A World Without Alzheimer’s”.
The message -- that Advocacy is both rewarding and straightforward -- comes through in the following dispatch from Gabrielle Corey in West Virginia:
“Justin Knabb and I (decorated in purple “STOP Alzheimer’s NOW” stickers!) headed to a town hall meeting in the beautiful Erma Byrd Gallery of the University of Charleston where WV Senator Jay Rockefeller was scheduled to talk about health care reform. After Sen. Rockefeller discussed his health care reform initiatives, he opened the floor up for questions.
“Justin got to ask the Senator if he was in support of (and would co-sponsor) the Community Living Assistance Services and Support (CLASS) Act. Senator Rockefeller adamantly announced his personal support for the bill but said that the Finance Committee had declined support of it and he would therefore not become a co-sponsor.
“Unfortunately, Justin and I had to peace out for a Memory Walk meeting, but we were told by one of our advocates that Senator Rockefeller closed the meeting by mentioning his mom’s struggle with Alzheimer’s. Although Senator Rockefeller declined support for the bill, Justin and I were pleased that we got to ask the question so Senator Rockefeller knew that WV cared about including long-term care in health care reform efforts.”
Our thanks to Justin and Gabrielle. Their story makes another important point about advocacy. Just the act of asking a question often prompts our Congressmen to talk about Alzheimer’s. And when that happens, it often stays on their minds.
Senator Rockefeller is a Congressional Alzheimer champion. He is a long-time advocate of accessible and quality healthcare and is recognized as one of the Senate's strongest champions for health care reform. Senator Jay Rockefeller and Sharon Percy Rockefeller were the recipients of the sixth annual Alzheimer’s Association Sargent and Eunice Shriver Profiles in Dignity Award.
He is also a co-sponsor of the Alzheimer’s Breakthrough Act (S.1452/HR 3286).
In my last entry, I described how the work of an Alzheimer’s advocate was continuing to have an impact years later. Over the next few days, I’ll be sharing recent reports from advocates around the country who are having an exciting, positive influence during the August recess when their elected officials are back home in district.
The first example comes from Massachusetts at an event hosted by one of Alzheimer’s strongest and most steadfast Congressional champions, Congressman Ed Markey. Here’s the story as related by Jennifer Carter:
“Congressman Ed Markey held a healthcare reform forum at the newly-opened Markey Senior Center (named after his parents) in his hometown of Malden, MA on July 12th. It was an event to both ask questions of the Congressman about healthcare reform as well as to express specific concerns about the different bills and issues being discussed in Congress.
“There were about 40 different civic groups, community organizations and agencies present that evening and I was fortunate enough to have ample opportunity to talk about the importance of Alzheimer’s disease and protecting those with the disease.
“I asked about research funding as well as ending the Medicare two year waiting period and was well received, with support from the other agencies and organizations present! The Congressman also talked about his experience with his mother who had Alzheimer’s disease and his frustration with a healthcare system that would not allow more community-based care and home care. He also spoke about what he referred to as the need for CPR in healthcare- Coverage, Prevention and Research- in order to make the US health system really work for all residents in the US. Over all, the experience was wonderful – Congressman Markey, a long time supporter of the Alzheimer’s Association, is a true supporter of all the Association stands for – research, early diagnosis, quality care and dignity!”
Jennifer makes a great point that we often overlook – advocacy is fun. It’s also more straightforward than we often realize.
But don’t wait to take action!
Congressman Ed Markey is leading the fight against Alzheimer’s. He introduced the Alzheimer’s Breakthrough Act (S.1452/HR 3286) earlier this year, tell your member(s) of Congress to sign on!
I had the privilege of joining the Alzheimer’s Association this past April to help push forward our public policy agenda with Congress, the Administration, and state governments across the country. I couldn’t have joined at a more interesting time. But, like you, we don’t do this work because it’s interesting. We do it because it’s a mission. We’re advocates because we recognize how important it is for our country to move off the mark, and respond to this disease with energy, focus, and determination that’s equal to Alzheimer’s devastating impact.
To be candid, so far our federal government hasn’t done so. However, thanks to the tireless efforts of Alzheimer’s volunteer advocates and committed champions in Congress, we are starting to see encouraging signs that momentum is building in this direction.
One recent conversation with Senate Majority Leader Harry Reid indicates how volunteer advocate efforts and Congressional champions work hand in hand. In this meeting to discuss how we can secure more Alzheimer research funding, Senator Reid mentioned how his views on Alzheimer’s were shaped several years ago, well before he was leader of the Senate. Senator Reid was told by a Nevada doctor about his first hand experiences caring for Alzheimer patients. The doctor also made a prediction the Senator never forgot – if we don’t find a way to treat this disease, it will bankrupt the nation. The doctor was right, of course, and his conversation set the stage many years later for us to have a very productive meeting with one the most powerful elected officials in the nation.
What’s the point? Well, one point is that the work of our grassroots advocates, like the Nevada doctor, is extremely important. More than you may know. You might not see the impact the day of a visit, a phone call, or an email, but it can last for years to come and add critical momentum to all our efforts.
Have a moment to take an action right now? Please urge your Members of Congress to co-sponsor the Alzheimer’s Breakthrough Act (S.1492/H.R. 3286). Then, call your local Alzheimer’s chapter to let them know that you want to participate in visits to your local congressional offices. Every visit, every conversation, matters.
I hope you’ll keep visiting this blog, and share it with your friends. We’ll be using it to keep you up to speed on our efforts. We also hope you’ll leave a comment and let us know how your efforts are going as well.
- Robert Egge Vice President, Public Policy and Advocacy National Alzheimer's Association
- Immunotherapy Targets Alzheimer’s Tau Tangles - - More Doctors Diagnosing and Treating Mild Cognitive Impairment -
Vienna, July 15, 2009 – Surprising new insights into how a Phase III Alzheimer’s drug might work were among the advances in potential therapies targeting two abnormal brain proteins – beta amyloid and phosphorylated tau – that were reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
Scientists also reported on how clinicians view and treat mild cognitive impairment (MCI), a research category used to define the state between normal aging and Alzheimer’s, that is now being used widely in clinical practice.
“There are now more than 26 million people living with Alzheimer’s and dementia around the world. The cost of caring for these people, and those who will get it in the next few years, will bankrupt the world’s healthcare systems,” said Ralph Nixon, PhD, MD, vice chair of the Alzheimer’s Association Medical & Scientific Advisory Council.
“But, as these studies and many hundreds more reported at ICAD 2009 show, there is hope. There are currently dozens of drugs in clinical trials for Alzheimer’s. This, combined with advancements in diagnostic tools, has the potential to change the landscape of Alzheimer’s in our lifetime. How fast we get there depends completely on the investment in research. We need more government and private dollars for Alzheimer’s research now to capitalize on the progress we’ve made in the last decade,” Nixon added.
The studies reported at ICAD 2009 were: -- Sam Gandy, et al -- Dimebon®, A Clinically Promising Drug For Alzheimer Disease, Regulates Amyloid-Beta Metabolism In Cultured Cells, In Isolated Nerve Terminals, And In The Interstitial Fluid Of The Living Rodent Brain. -- Moran Boimel, et al -- Immunotherapy Targeting Pathologically Phosphorylated Tau In A Tauopathy Mouse Model. -- Scott Roberts, et al -- Clinical Practices Regarding Mild Cognitive Impairment (MCI) Among Neurology Service Providers.
Vienna, July 14, 2009 – Changes in the brain measured with MRI and PET scans, combined with memory tests and detection of risk proteins in body fluids, may lead to earlier and more accurate diagnosis of Alzheimer’s, according to new research reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
The National Institute on Aging’s (NIA) Alzheimer’s Disease Neuroimaging Initiative (ADNI), data from which forms the basis of these three studies, is a $60 million, 5-year, public-private partnership to test whether imaging technologies (such as MRI and PET), other biomarkers, and clinical and neuropsychological assessment can be combined to measure progression toward Alzheimer’s.
A biomarker is a substance or characteristic that can be objectively measured and evaluated as an indicator of normal body processes, disease processes, or the body’s response(s) to therapy. For example, blood pressure is a biomarker that indicates risk of cardiovascular disease.
“With the continued aging of the population and the growing epidemic of Alzheimer’s, early detection of the disease is crucial for risk assessment, testing new therapies, and eventual early intervention with better drugs, once they are developed,” said Ronald Petersen, PhD, MD, chair or the Alzheimer’s Association Medical & Scientific Advisory Council.
The studies reported at ICAD 2009 were: -- Michael Ewers, et al - Biomarker Based Diagnosis Of Very Mild Alzheimer’s Disease: A Multicenter Study. -- Susan Landau, et al - Comparing predictors of conversion: Data from the Alzheimer’s Disease Neuroimaging Initiative. -- Dawn C. Matthews, et al - Hippocampal glucose metabolism predicts cognitive decline and correlates to disease progression in the ADNI population.
Vienna, July 14, 2009 – Eating a “heart healthy” diet meant to lower blood pressure, and maintaining or increasing participation in moderate physical activity, may help preserve our memory and thinking abilities as we age, according to new research reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
“We can’t do anything about aging or family history, but research continues to show us that there are lifestyle decisions we all can make to keep our brains healthier, and that also may lower our risk of memory decline as we age,” said William Thies, PhD, Chief Medical & Scientific Officer at the Alzheimer’s Association.
The studies reported at ICAD 2009 were: -- Heidi Wengreen, et al -- DASH diet adherence scores and cognitive decline and dementia among aging men and women: Cache County study of Memory Health and Aging. -- Deborah Barnes, et al – The impact of changes in physical activity levels on rate of cognitive decline in a biracial cohort of non-demented elders. -- Mary Tierney, et al – Intensity of long-term physical activity and later life cognition in postmenopausal women. -- Thomas Obisesan, et al – Aerobic-related physical activity interacting with apolipoprotein E genotypes, is associated with better cognitive function in a nationally representative sample: The Third National Health and Nutrition Examination Survey (NHANES III).
The 2009 Alzheimer’s Association International Conference on Alzheimer's Disease (ICAD 2009) brings together more than 3,000 researchers from 70 countries to share groundbreaking research and information on the cause, diagnosis, treatment and prevention of Alzheimer’s disease and related disorders. ICAD 2009 will be held in Vienna, Austria at Messe Wien Exhibition and Congress Center from July 11–16.
PTSD ASSOCIATED WITH HIGHER ALZHEIMER’S/DEMENTIA RISK; MODERATE ALCOHOL CONSUMPTION MAY LOWER IT
PTSD ASSOCIATED WITH HIGHER ALZHEIMER’S/DEMENTIA RISK; MODERATE ALCOHOL CONSUMPTION MAY LOWER IT
Also, Survey Shows Adults Don’t Know Heart Risk & Alzheimer’s Risk Are Related
Vienna, July 13, 2009 – Though discoveries about Alzheimer’s disease risk factors are often in the news, adults do not know about the relationship between Alzheimer’s disease risk and heart health, nor that physical activity can be protective against dementia, according to new research reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
Two additional studies reported at ICAD 2009 show higher Alzheimer’s risk in veterans with post-traumatic stress disorder (PTSD), and lower Alzheimer’s risk among adults who consume moderate amounts of alcohol.
“Your brain plays a critical role in almost everything you do: thinking, feeling, remembering, working, and playing – even sleeping,” said Maria Carrillo, PhD, Director of Medical & Scientific Relations at the Alzheimer’s Association. “The good news is that we now know there’s a lot you can do to help keep your brain healthier as you age. These steps might also reduce your risk of developing Alzheimer’s disease or another dementia.”
“There’s a strong and credible association between heart health and brain health. If people learn about and do some simple lifestyle modifications, such as being more physically active and eating a brain healthy diet, it could have an enormous impact on our nation's public health and the cost of healthcare,” Carrillo added.
The studies reported at ICAD 2009 were: -- Colleen Jackson, et al – Dementia literacy: Public understanding of known risk factors. -- Kristine Yaffe, et al -- Post-traumatic stress disorder and risk of dementia among U.S. veterans. -- Kaycee M Sink, et al - Moderate alcohol intake is associated with lower dementia incidence: results from the Ginkgo Evaluation of Memory Study (GEMS).
Vienna, July 13, 2009 – The number of people with Alzheimer’s and dementia – both new cases and total numbers with the disease – continues to rise among the very oldest segments of the population in contradiction of the conventional wisdom, according to research reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
Previous epidemiological studies have suggested that the number of people with Alzheimer’s and dementia begins to level off and perhaps even go down a bit in people age 90 and above, known as the “oldest old.” This is the fastest growing segment of the population in western countries.
“The number of people affected by Alzheimer’s and dementia is growing at an epidemic pace, and the skyrocketing financial and personal costs will devastate the world’s economies and healthcare systems, and far too many families,” said William Thies, Ph.D., Chief Medical & Scientific Officer at the Alzheimer's Association. “We must make the fight against Alzheimer’s a priority before it’s too late.”
“However there is hope. There are many drugs in late stage clinical trials for Alzheimer’s that show promise to slow or stop the progression of the disease. This, combined with advancements in early detection, has the potential to change the landscape of Alzheimer’s in our lifetimes. But we need more funding for research to see these possibilities through to completion,” Thies said.
The research reported at ICAD 2009 includes a study of more than 2,100 individuals age 80 years or older in eight municipalities of Varese province, Italy, and a systematic review and collaborative analysis of studies reporting the prevalence of dementia in Europe. -- Ugo Lucca, et al – Risk of dementia continues to rise in the oldest old: The Monzino 80-plus Study. -- Emma Reynish, et al – Systematic Review and Collaborative Analysis of the Prevalence of Dementia in Europe.
Dr. William Thies discusses studies presented during the first day of the 2009 Alzheimer's Association International Conference on Alzheimer's Disease.
Vienna, July 12, 2009 – A doctor’s positive attitude to Alzheimer’s diagnosis and their trusting, personal relationships with local dementia support service providers are powerful enablers for early diagnosis of Alzheimer’s, according to new research reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
Current data suggest that less than 35 percent of people with Alzheimer’s or other dementias have a diagnosis in their medical record. While there is currently no cure for Alzheimer’s, early detection is critical to ensuring that people have the power to plan their own healthcare and future, according to the Alzheimer’s Association.
“Being diagnosed early is vital to receiving the best help and care possible, living one’s life to the fullest, and capitalizing on opportunities such as participating in clinical studies,” said William Thies, PhD, Chief Medical & Scientific Officer at the Alzheimer’s Association.
Dr. Nerida Paterson, Senior Lecturer in the Discipline of General Practice at the University of Newcastle, Australia, and colleagues are interviewing more than 100 general practitioners (GPs) from four Australian research sites. At ICAD 2009, Paterson reported an interim analysis including interviews with 25 GPs.
The most cited enabler to early Alzheimer’s diagnosis is a doctor’s positive attitude to the diagnosis and treatment of dementia. Most of the GPs reported that referral to local services for planning, education, and support is an important part of disease management. Additional factors that encourage early Alzheimer’s diagnosis include: support from relatives and caregivers, belief in the patient’s right to know, and the desire of GPs to be honest and open with their patients.
The studies reported at ICAD 2009 were: -- Nerida E. Paterson, et al - Early diagnosis of dementia in primary care in Australia: A qualitative study into the barriers and enablers. -- Nerida E. Paterson, et al - The barriers to the early diagnosis of dementia and diagnostic disclosure in primary care.
The 2009 Alzheimer’s Association International Conference on Alzheimer's Disease (ICAD 2009) brings together more than 3,000 researchers from 70 countries to share groundbreaking research and information on the cause, diagnosis, treatment and prevention of Alzheimer’s disease and related disorders. ICAD 2009 will be held in Vienna, Austria at Messe Wien Exhibition and Congress Center from July 11–16.
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit alz.org.
Vienna, July 12, 2009 – Results from two large studies using DHA, an omega 3 fatty acid, were reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
One of the trials was conducted by the Alzheimer’s Disease Cooperative Study (ADCS) supported by the U.S. National Institute on Aging (NIA), and the second by Martek Biosciences Corporation. The NIA trial lasted 18 months and was conducted in people with mild to moderate Alzheimer’s. Martek’s trial was six months, and was conducted in healthy people to see its effect on “age related cognitive decline” Both studies used Martek’s algal DHA.
The results of the ADCS trial show no evidence for benefit in the studied population. The Martek trial showed a positive result on one test of memory and learning, but that study was in healthy older adults with mild memory complaint, not people with Alzheimer’s or another dementia. The results need confirmation.
“These two studies – and other recent Alzheimer’s therapy trials – raise the possibility that treatments for Alzheimer’s must be given very early in the disease for them to be truly effective,” said William Thies, PhD, Chief Medical & Scientific Officer at the Alzheimer’s Association. “For that to happen, we need to get much better at early detection and diagnosis of Alzheimer’s.”
DHA (docosahexaenoic acid) is the most abundant omega 3 fatty acid in the brain. Previous animal studies and epidemiology in humans suggested that DHA may be beneficial in people with Alzheimer's.
The studies reported at ICAD 2009 were: -- Joseph Quinn, et al – A clinical trial of docosahexaenoic acid (DHA) for the treatment of Alzheimer's disease. -- Karin Yurko-Mauro, et al – Results of the MIDAS Trial: Effects of Docosahexaenoic Acid on Physiological and Safety Parameters in Age-Related Cognitive Decline.
- Overcoming the Biggest Obstacle to Improving Alzheimer’s Treatments -
Vienna, July 12, 2009 – Partnering with local physicians, working with local clinics, and conducting educational seminars and health fairs were found to be the most effective tools in recruiting people for Alzheimer’s clinical studies, according to new research reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
Surprisingly, patient registries and Internet recruiting were found to be much less successful recruitment strategies, according to staff at the U.S. Alzheimer’s Disease Centers (ADCs). The National Institute on Aging (NIA) funds 30 ADCs at major medical institutions across the nation.
“Second only to inadequate funding, recruiting participants for clinical studies is the single greatest barrier to developing better treatments for Alzheimer's disease,” according to William Thies, PhD, Chief Medical & Scientific Officer at the Alzheimer’s Association. “These studies give us clear information – from people who are conducting large scale clinical trials now – on how we may recruit participants better and faster in the future.”
In another study looking specifically at recruiting African Americans for Alzheimer’s genetics studies, researchers found that having a relative with the disease, use of minority study personnel, and monetary compensation were the most powerful incentives for participation in research.
The studies reported at ICAD 2009 were: -- Tamara S. Markgraf, et al - Recruiting for Alzheimer’s disease Research: A systematic review of recruitment techniques and challenges among NIH funded ADRCs. -- Goldie S. Byrd, et al - Ascertaining Older African Americans for Genetic Studies in Alzheimer’s Disease. -- Ulrika Akenine, et al - Why AD patients and caregivers participate in randomized clinical trials.
"My boyfriend would tell me I was forgetting conversations we had. I was forgetting certain things yet retaining others, so he accused me of "remembering only what I wanted to remember." He also told me I wasn't the same person. I wasn't acting like my "old self." I often became irritated and aggravated with many things which was unlike my normal personality.
With the help of Early Diagnosis and Intervention with medication and treatment, I found out I wasn't going crazy. I found medications to slow down the AD process and therapy to help me cope with my disease. I am still an active member of society, do volunteer work, help take care of my mom who, also has Alzheimer's disease, and am still able to take care of myself. I am able to live alone and function pretty well. I have been able to put all my affairs in order so that my daughter won't have to face that when I can no longer make those decisions. I am able to participate in clinical trials of new medications which may be disease modifying.
Early Diagnosis and treatment has helped me and my loved ones make the best of the situation."
"I felt my wife was nagging me about my driving; in my view, there was nothing wrong with it. I agreed to a meeting with my doctor to discuss her complaints. He agreed with her; he told me not to drive.
To foil their view and show them how wrong they were, I took a simulated driving test at Sister Kenny Institute in Minneapolis. I failed it miserably.
After a Neuropsychometric test, I was diagnosed as having Alzheimer’s disease.
The test told them I had substantial visual peripheral perception deficiency. This meant that I would see things but they had no meaning. This explained why I was screwing up driving, why I was falling after tripping over things in plain sight. It explained why I bumped into closed windows and was clumsy as could be.
My tripping and falling shattered a 12- year-old hip replacement that required surgery that had me on my back homebound, unable to walk, for 2 months. The recovery was rough. That was price enough! I am now on my feet ready to live again.
Knowing about the source of my clumsiness has helped me and my family create a safer environment. It has also given me the opportunity to pursue creative, social and fun activities as much as I want, which is very important to me. I just let my wife drive!"
"The first sign for me was forgetting and having trouble at work. I was trusting my brain to be there and denying that something was wrong. The problem with that I was forgetting too many things and I thought it was menopause. I saw my OBGYN and she said that all was well. I then went to my primary care doctor and we did blood tests. Everything came back normal.
As time went on, it was getting worse and my family, friends and co-workers were growing very impatient with me, especially when I missed dinners or events that were planned. Working as a meeting planner was a more specific problem: I was not able to multitask as I had been for years. I could not remember things without writing them down, and then I could not find the paper with the note on them. And that was that...I had Younger-Onset Alzheimer’s Disease...
It was a blow, but I am not the type of person that gives up that easily. Now, I am active in my community, educating others about this disease and getting involved."
"One of the first indications that something was awry was missing appointments that were on my schedule. Frequently, I put times down wrong, or failed to follow the time I had down correctly, arriving too early, late or not at all.
Now that I am diagnosed with Alzheimer’s, I keep two schedules to avoid missing anything. At one time I didn’t keep a schedule. A busy lawyer, I had every appointment, deadline and due date in my head.
With Alzheimer’s, I know I need to take these extra steps and it helps me be able to continue to be active and involved."
Since the release of Still Alice, I've had the privilege of talking to a lot of audiences about Alzheimer's. One of the most common questions people ask me is:
"When I can't find my keys, how do I know if that's normal forgetting or a symptom of Alzheimer's?"
My quick and dirty answers are usually something like:
"Well, when you find your keys, are they on the table or in the refrigerator?"
and
"We all have trouble finding where we put our keys. It's worrisome if you find your keys and then can't remember what you're supposed to do with them."
Forgetting keys, names, how to get somewhere, how to do something--How do we know when it's normal and when it's Alzheimer's?
They also provide this phone number if you'd like to talk to someone about your concerns: 877 IS IT ALZ
My friend Kris recently shared one of her early warning signs (warning sign #4) with me:
My biggest tell-tale sign was when I'd gone shopping with my husband, and we went to a Best Buy store. I was looking at some CDs, and my husband had gone off somewhere else, and I looked up from the CDs, and I didn’t know where I was or how I had gotten there. It's kind of hard to be in a Best Buy store and not know you’re in a Best Buy store, you know, with all the Best Buy signs everywhere. The only way I can describe it, and it’s so funny because in your book it was like this, it’s like an out of body experience.
I remember going out of the store to look at my surroundings, and I looked at the sign, but I couldn’t read that it was Best Buy. I saw the sign, but I couldn’t put together that I was at the Best Buy store. So I remember sitting down on the steps in front of the store and thinking, 'Well, I got here somehow, I’m just going to have to figure out how I got here.'
I sat there for a while and then went back in the store, and I recognized my husband. And I thought, 'OK. I got here with him, I’m still not sure where I am, but I got here with him and I’m okay because I know I can get home with him.' And I didn’t say anything to him. I just followed him out to the car, got in the car, went home, and that night I still could not remember where I had been.
I didn’t want to alarm my husband about it, so just jokingly I said to him, 'You know, I know we went out today, but I can’t remember where we went.'
He said, 'We went to Best Buy.'
And I said, 'Oh, yeah.'
How old were you?
46.
When I was diagnosed with Alzheimer's, I was relieved because now I knew there was a name to it. I know there’s no cure, and it broke my heart, but by the same token, now I knew what I was dealing with and that I wasn’t crazy.
"There was one episode with my memory that scared me a great deal. When I was trying to recall something, in my mind, a large black cloud appeared, covered the answer and it was gone.
I was on a bus on my way to visit my daughter when an elderly woman sat next to me. We began to chat as strangers do. During the conversation she asked where my daughter lived. I got out “Allen…” and that black cloud enveloped the rest. And I stammered, "No it's not Allentown, that's in Pennsylvania. It's not Allenberg, I never heard of that. It's Allen something or other." I must have looked as upset as I felt, because she patted my hand and said, "That's all right dear, we all forget things as we get older."
I know now that the black cloud wasn’t just a sign of aging. Once I was diagnosed and starting getting treated for Alzheimer’s, the black cloud disappeared."
This week, the Alzheimer’s Association is launching its new Early Detection campaign, “Know the 10 Signs.” We’ve asked our Early Stage Advisors to contribute some of their personal experiences recognizing the signs of Alzheimer’s. These courageous individuals have all endured the arduous process of discovering their disease and have volunteered their energy to the Alzheimer’s Association to advance the most effective step in Alzheimer’s treatment: Early Detection.
Every day this week, we’ll be posting real stories of diagnosis and the relation of each to the 10 Signs of Alzheimer’s disease. For more information on the 10 Signs, please contact the Alzheimer’s Association at 877-IS IT ALZ (877.474.8259) or visit alz.org/10signs.
Two years ago, I had a conversation with my friend, Jay, that changed my life. Here is some of what we talked about.
I ask him, “What did it feel like to hear those three words---You Have Alzheimer’s?”
“We (he and his wife) never really did have a moment of denial. I’d accepted the Alzheimer’s Disease diagnosis when the doctor put me on Aricept. That was the time of shock and relief. Finally, we have an answer. We never thought of Alzheimer’s, but it was great to know that it’s not something mysterious anymore. It’s just this thing that five million other Americans have.”
When Jay and his wife left his doctor’s office, they went straight to a bookstore to learn more about Alzheimer’s Disease. They bought The Forgetting (Shenk), Alzheimer’s Early Stages (Kuhn), and Alzheimer’s for Dummies. They learned about the symptoms and stages, living with the disease, and planning for the future. He took the medications prescribed by his physician. But something in Jay urged him to learn and do more.
Armed with a diagnosis, they attended a mind-body retreat, where Jay began to discover new parts of himself, unused by Jay the architect, undamaged by Jay the man with Alzheimer’s.
He ate vegan meals rich in anti-oxidants and learned about natural healing. He began exercising.
“Every morning at the retreat, we did exercises focused on strength and balance and getting the lymph system moving. Aerobic exercise is the number one thing you can do for your health, your brain, and the growth of your brain.”
He started reading more, but not about Alzheimer’s Disease. He tells me that I absolutely have to read Eckhart Tolle, Deepak Choprah, Jon Kabat-Zinn, Stephen Levine, Gary Zukav.
“I’ve been spending a lot of time and attention on books about consciousness and healing. This is the real deal about who we really are, the stuff they never taught you in school. I’m taking it all in as fast as I can without getting in a hurry and falling over myself.”
Jay is looking at me now, his eyes alive and bright, his voice louder and sure of itself. He’s excited about all this, and his mood infects me easily. I perk up.
Look at all you’re discovering.
“I’ve taken my life back. I’m happy. I’ve never been happier. I’ve been spending a lot of time on self-awareness, discovery, and actualization through meditation. I never meditated before this disease. I’m starting to get it down. In the last year, I’ve been actively involved in an intensive meditation group that meets weekly, and the miracles that have been happening since I’ve started doing it have been just amazing.”
I’m nothing short of awed by Jay’s transformation. Here’s a man who has been diagnosed with a disease synonymous with death, but the man before me, in this present moment, is not a dying man.
“My main avocation has always been music. I’m in a folk string group, and I’d always played the banjo and guitar. Recently, my friends in the group encouraged me to try mandolin, so for a few years now I’m becoming a serious mandolin player.”
Wow, that’s impressive. You realize that you have a disease that makes it difficult to learn new tasks.
“Yes, but that’s exactly what you need to do! It’s like doing my Sudoko every morning. Learning a new song, a new skill, challenging the grey matter and forging new pathways. And music also gives me a connection to the people I play with. My wife and I have been in a community chorus for years. It’s a great outlet for self-expression and creativity..”
Jay, what you’re doing is incredible. You know, most people can’t imagine you. When most people think of Alzheimer’s, they see end stage. They skip immediately from diagnosis to deathbed.
“For the first time in my life, I’ve got nothing to lose. It’s liberating. It’s real clear to me. Our priority is living the good years we have left. We know the shape of the end of this thing, but we still have a lot of living to do. Right after diagnosis, I began attending a guitar/mandolin camp, including a couples weekend with my wife, and I’ve already signed us up for next year’s mandolin camp and couples’ weekend. And I bought a new car, even though I may not be able to drive much longer.
I’ve come to see the importance acceptance and accommodation—accepting the diagnosis and all its implications, and learning to adjust and accommodate to the limitations it imposes—and then refocusing and reprioritizing my life to my newly rediscovered core values. Anyone can discover their own. Mine are family, creativity, life-long learning, service to community.”
A man with a video camera is hovering a few feet away. I look down at my watch. My time with Jay is about up. He has an interview with some folks from HBO next. I wish I we had more time together. I’m learning, inspired. I like him. He knows who he is and what he’s about. It’s magnetic. I want to be in the presence of his peace and excitement for life. I don’t know many people in this world who have what Jay has found with Alzheimer’s.
“A brilliant young professor left me, over 50 years ago, with 'it’s all in how you hold it.' For me, after all of this, it all boils down to living my life like there’s no tomorrow, while conducting myself and treating my body-mind-spirit in such as way as to maximize the number of tomorrows that I’ll have available.”
A couple of years ago, I sat down and talked with my friend James about his life before Alzheimer's.
James used to be the Director of IT for a Fortune 500 company. At any given time, he was responsible for twenty-five to thirty projects on a global basis, he received over a hundred emails daily that required responses, he attended six to ten meetings each day, and he worked anywhere from sixty-five to one-hundred hours each week. He likened his job to the corporate version of an air traffic controller. A self-proclaimed adrenaline junkie, he thrived in this kind of intense environment and was consistently ranked in the top ten percent of their 70,000-person workforce.
He rattled off descriptions of his work life with effortless enthusiasm. He told me that it was a really exciting time in his life, that his work was great and fabulous and that he loved it. I was undoubtedly convinced.
And then his Alzheimer’s symptoms began to surface. James’ first and most salient symptom was exactly what we all think of when we think of Alzheimer’s Disease –forgetting. But James was only 43 years old at the time. Forgetting doesn’t wave its arms and scream Alzheimer’s at the age of 43. Both James and his primary care doctor blamed his high-pressured job. He needed to slow down. Relax. His doctor thought he might be depressed. James didn’t think so. He had a lot of energy, and aside from forgetting things, he felt like himself. But he trusted his doctor and went on Wellbutrin.
The forgetting continued.
What kinds of things was James forgetting? He forgot to go to meetings, that there ever was a meeting, that it was he who’d actually called the meeting, people’s names, people he’d known for years, where he’d placed needed documents.
What did this forgetting feel like?
“I think of my mind as a desk, and all the papers on it are my memories, all the things I’m keeping track of. It’s as if someone sneaks up when I’m not looking and takes random pieces of paper off my desk. When I turn back around and look, it’s as if those pieces of paper never existed. I won’t even realize they’re gone until whatever they’re needed for comes up. Then I’ll have no idea where they are. They’re gone. That’s what was happening with my memories. I wouldn’t realize my memories were gone, and I would maybe even argue that they weren’t gone until they were needed, and then I wouldn’t have anything to draw on.
I also lost my ability to multitask. When you multitask, you keep information in place holders in your mind. You’re using your short-term memory. I think of it like an air traffic controller, keeping track of where all the planes are all the time. Even when you’re focusing on one particular plane, you have to keep the other planes in mind. Part of what made me successful as a director was my ability to work on twenty-five to thirty projects at once. I was losing sight of meetings, documents, conversations, the existence of entire projects.”
His planes were starting to collide, wander off the radar screen, and hit the ground.
“I also lost my sense of time. Two hours would feel like twenty minutes.”
This is also a symptom of forgetting. The way we perceive the passage of time requires the ability to string together memories of what happened between a time ‘then’ and another time ‘now.’ If memories are missing, stolen off the mental desk, this tends to shrink that time period.
With all this forgetting at a job that required a high level of remembering, James was beginning to fail at work. I wondered if maybe home life, where he didn’t have the same kinds of multitasking demands placed on him, was more forgiving.
What was happening at home?
“I would get home and be just exhausted. I’d hardly be able to speak because I was so tired. I think it was because my mind was working so hard to get through the day at work, that by the time I got home, my mind literally had nothing left. I would sit there and be blank for a while. It had to be frustrating for my wife, to see me spending all my energy and passion at work and having nothing left at home. That was really difficult on my family, wondering why Dad’s disengaged, why Dad doesn’t want to do anything. To them, it probably looked like depression. But it turns out it was something else.”
After an arduous journey through a series of medical tests that excluded every other possible known cause of forgetting, James was ultimately diagnosed with “the only rock left on the table.” Alzheimer’s Disease. James was forty-five years old.
The Alzheimer's Association commends the independent Alzheimer's Study Group (ASG) on their report released today, “A National Alzheimer’s Strategic Plan: The Report of the Alzheimer’s Study Group”. The report explains the looming national crisis created by Alzheimer’s disease and offers real solutions for the nation.
Alzheimer's Association President and CEO Harry Johns, along with members of the Congressional Task Force on Alzheimer’s Disease called for the creation of the Alzheimer’s Study Group in July of 2007. Today the Alzheimer's Association is pleased to receive the report on behalf of the larger Alzheimer community.
“You can be assured that the Alzheimer’s Association will play a leading role in seeking the enactment of the core recommendations present in the ASG report, says Johns, “There must be an investment in Alzheimer’s proportionate to the current and future impact of the disease. This investment must be far more than the grossly inadequate funding today.”
The ASG report confirms that we will spend nearly $20 trillion on Alzheimer’s by the middle of the century. That’s equal to 25 stimulus bills — more than one stimulus sized bill every other year between now and then.
Johns continues, “For the federal government, state government and families – the economic impact of Alzheimer’s is devastating. We must seize the solutions presented in the ASG report and invest in initiatives that result in better coordinated care, more supportive services for families and ultimately the prevention of the disease. An investment in Alzheimer’s is not only good social policy, it is an economic necessity.”
The Alzheimer's Association also thanks ASG co-chairs Former Speaker Newt Gingrich and Former Senator Bob Kerrey, ASG members Christine Cassel, Meryl Comer, Steven E. Hyman, Henry McCance, Mark McClellan, Sandra Day O’Connor, James Runde, David Satcher, and Harold Varmus, and ASG Executive Director Robert Egge for their outstanding work.
The Alzheimer’s Association The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit www.alz.org.
Contact: Alzheimer's Association Media line: 312.335.4078 E-mail: media@alz.org
Washington, D.C., March 24, 2009 – Total healthcare costs are more than three times higher for people with Alzheimer’s and other dementias than for other people age 65 and older, according to the Alzheimer’s Association’s 2009 Alzheimer’s Disease Facts and Figures, released today.
In the new report, total healthcare costs are calculated as per person payments measured from all sources. Medicare payments alone are almost three times higher for people with Alzheimer’s and dementia than for others age 65 and over; Medicaid payments alone are more than nine times higher.
“With the country facing unprecedented economic challenges and a rapidly aging baby boomer population, now is the time to address the burgeoning Alzheimer crisis that triples healthcare costs for Americans age 65 and over,” said Harry Johns, Alzheimer’s Association CEO.
“It is widely understood that addressing health care is key to the country regaining its financial footing,” continued Johns. “And there is no way this can be done without improving Medicare and Medicaid which Alzheimer’s directly impacts. A strategy to immediately confront Alzheimer’s has the potential to save millions of lives and billions of dollars by reducing the burden on Medicare and Medicaid.”
People with Alzheimer’s are high consumers of hospital, nursing home and other health and long-term care services, which translates into high costs for Medicare, Medicaid and millions of families. As families struggle to survive in a deepening recession and as states grapple with budget shortfalls, Alzheimer’s disease threatens to overwhelm them both. Most people with Alzheimer’s also have one or more additional serious medical conditions, such as diabetes or coronary heart disease. Their Alzheimer’s greatly complicates the medical management for these other conditions and drives up costs significantly.
According to the Facts and Figures report, in 2006: Medicare beneficiaries with diabetes plus Alzheimer’s or another dementia had 64 percent more hospital stays than those with diabetes and no Alzheimer’s, and their average per person Medicare costs were $20,655 compared to $12,979 for beneficiaries with diabetes but no Alzheimer’s or dementia.
Medicare beneficiaries with coronary heart disease and Alzheimer’s disease or another dementia had 42 percent more hospital stays than those with coronary heart disease and no Alzheimer’s or dementia, and their average per person Medicare costs were $20,780 compared to $14,640 for beneficiaries with coronary heart disease but no Alzheimer’s or dementia.
With family members providing care at home for about 70 percent of people with Alzheimer’s disease, the ripple effects of the disease can be felt throughout the entire family. According to Facts and Figures, in 2008, nearly 10 million Alzheimer caregivers in the U.S. provided 8.5 billion hours of unpaid care valued at $94 billion. In addition to the unpaid care families contribute, the report also reveals that Alzheimer’s creates high out-of-pocket health and long-term care expenses for families. Out-of-pocket costs that are not covered by Medicare, Medicaid or other sources of insurance are 28 percent higher for Medicare beneficiaries with Alzheimer’s than those without. Individuals with Alzheimer’s and other dementia living in nursing homes or assisted living facilities incurred the highest out-of-pocket costs – an average of $16,689 a year.
Growing Prevalence of Alzheimer’s Disease and Dementia According to the report, there are 5.3 million Americans living with the disease and every 70 seconds someone in America develops Alzheimer’s disease. By mid-century someone will develop Alzheimer’s every 33 seconds. By 2010, there will be nearly a half million new cases of Alzheimer’s each year; and by 2050, there will be nearly a million new cases per year.
Alzheimer’s is the sixth leading cause of death in the country, surpassing diabetes; it is the fifth leading cause of death among individuals 65 and older. From 2000 to 2006, while deaths from other major diseases dropped -- heart disease (-11.5 percent), breast cancer (-.6 percent), prostate cancer (-14.3 percent) and stroke (-18.1 percent), deaths from Alzheimer’s disease rose 47.1 percent.
“Currently, there are no treatments that can prevent, delay or reverse Alzheimer disease and research funding has been stagnant for the past six years. With the first baby boomers turning age 65 in just two short years – and entering the arena of increasing risk for developing Alzheimer’s – an aggressive plan is needed now to address the threat of this disease. There are too many lives, too little time and too much at stake for anything less,” Johns said.
Implications for States Demographic trends indicate that the number of affected individuals and families will grow significantly in the years to come, not only having a profound effect on families and health systems but on state budgets as well. In order for states to plan for this rapidly growing population, they must first have reliable information about the characteristics and needs of their residents who are coping with Alzheimer’s or other dementia. An existing survey process is the easiest way to obtain this important information. The Behavioral Risk Factors Surveillance System (BRFSS) is an annual state public health survey done in conjunction with the Centers for Disease Control and Prevention (CDC). Since 2003, some states have added questions about caregiving for people with Alzheimer’s and other dementias in their BRFSS surveys.
The new Facts and Figures report highlights the BRFSS survey findings from the states of Washington and North Carolina. The BRFSS survey allows residents to say for themselves what their challenges are. For example in Washington, 48 percent of the caregivers for individuals with memory loss or cognitive impairment revealed that stress was the greatest difficulty they faced. Beginning this year, an approved set of family caregiving questions is available for all states to add to their BRFSS survey, and another set of questions on cognitive impairment is being developed for 2010.
Mild Cognitive Impairment (MCI) – An Emerging Issue Experts believe that early detection of Alzheimer’s disease and early intervention with improved therapies provides the greatest opportunity to delay or stop additional damage to the brain. To that end, the new report highlights the emerging role of a condition known as mild cognitive impairment (MCI). A person with MCI has problems with memory, language or other essential cognitive functions that are severe enough to be noticeable to the individual and others, but not severe to interfere with daily life.
There is consensus within the scientific research community that intervention with any disease-modifying treatment should occur as early as possible, ideally even before symptoms appear. Individuals with MCI have a higher risk for developing Alzheimer’s disease, but more research is needed to determine why some people with MCI go on to develop Alzheimer’s and why some do not. By participating in scientific studies and clinical trials, individuals with MCI will help to speed progress in finding ways to prevent or cure Alzheimer’s by providing scientists with the opportunity to test new Alzheimer treatments and learn faster whether or not the treatments work.
“There is a rich, diverse variety of treatment possibilities for Alzheimer’s that scientists are exploring, offering great hope that drugs that may slow or even reverse disease progression could be on the horizon – saving millions of dollars in public health programs,” said Ronald Petersen, M.D., Ph.D, the Alzheimer’s Association’s Medical Scientific Advisory Council Chair. “A national strategy and a sustained commitment to Alzheimer research is what is needed to today to make Alzheimer survivors tomorrow.”
The full text of the Alzheimer’s Association’s 2009 Alzheimer’s Disease Facts and Figures can be viewed at alz.org. The full report is scheduled to appear in the Mary 2009 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association (volume 5, issue 3)
The Alzheimer’s Association The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s.
Whether you have Alzheimer’s or are of a certain age that you’ve started routinely forgetting where you put your keys, you’re probably hearing a lot about the benefits of “exercising your brain.” We hear this “use it or lose it” philosophy mentioned frequently in sound bytes from medical experts, but what are they really asking us to do? And why? Are they just trying to get us to do lots and lots of crossword puzzles?
Here’s what they mean. Let’s think of the neurons in your head as roads, and let’s say you’re trying to remember a piece of information. Let’s say you’re trying to remember my name: Lisa Genova. When you think, “What is her name?” your brain starts looking for the road that will take it to the answer. You might travel down the road “VOICE OPEN MOVE Blogger” to get to Lisa Genova.
If you’ve only been to this Blog once, and that’s the only piece of information you know about me, you might have a hard time at first finding that one and only road. And because it hasn’t been well-traveled, the road might be small, unlabelled, maybe not even paved. It might take you a few minutes (or all day!) to remember my name.
But if you start going to my Blog over and over, if you travel this particular road over and over, or in other words, if you practice and rehearse this information, “Lisa Genova is the VOICE OPEN MOVE Blogger,” then the road becomes stronger. It becomes simple to find with a nicely labeled street sign, and it’s now wider and paved. After many experiences with “Lisa Genova is the VOICE OPEN MOVE Blogger,” this road becomes familiar territory, smooth and easy to travel on. You now know my name and can remember it easily.
But what happens if you are in the earliest stages of Alzheimer’s, and amyloid-beta is starting to clog some of your synapses? Imagine amyloid-beta as a roadblock, keeping you from traveling down that road that leads to the information you’re looking for. What if amyloid beta is blocking the “VOICE OPEN MOVE Blogger” road to Lisa Genova. If this is the one and only road to my name, and it is blocked, then you can’t retrieve my name. Now when you ask yourself, “Who is the VOICE OPEN MOVE Blogger?” you cannot remember no matter how hard you think. The information is inaccessible. Forgotten.
But let’s say you paved more than one road to my name. Let’s say you also built “Author of Still Alice Street” and “Neuroscientist from Harvard Avenue” and “That Italian Scientist/Author who lives on Cape Cod Boulevard.” Now you can have a roadblock on “VOICE OPEN MOVE Blogger Road” and still have three other ways to get to my name. These other roads may not be the most direct routes to my name if you haven’t traveled them as much, but they’ll still lead you to Lisa Genova. You can still remember me.
The more connections you make to a piece of information (the more roads you build) and the more you use or rehearse that information (the more you travel those roads), the more able you’ll be to detour clogged connections (amyloid beta road blocks), and remember what you’re trying to remember.
It is possible that there has never been a moment in America with so much potential to either advance or diminish Alzheimer's research and care. Our nation faces unprecedented times and, with that, comes an unprecedented opportunity to seize this moment and insist our leaders make a greater investment in finding ways to effectively treat, cure, and prevent Alzheimer's disease.
There are an estimated 5 million people who already have Alzheimer's. As many as ten million people care for them. The disease has risen to the 6th leading cause of death in the U.S. Millions more will experience the devastating effects if we don't stop Alzheimer's now. Components of the stimulus package and health care reform could benefit them.
From March 23-25, the Alzheimer's Association will take its fight to Capitol Hill for its annual Public Policy Forum.
It is critical to our mission, to the people we serve, and to society at large to make this Public Policy Forum louder than ever. We need advocates from every state and from every congressional district. We need people with the disease, their caregivers, health care professionals, business leaders, and scientists to raise their voices and educate our policy makers so they know that an investment in Alzheimer's is an investment in the economic health of the nation and the personal health of millions.
The volunteers and staff of the Alzheimer’s Association are working hard to make as much noise as possible about key Alzheimer's issues and to make it as easy as possible for people to attend the Forum. Early-bird discounts and group discounts are available.
Never before has so much been at stake nor has time to help families and advance science been more precious. We need to demonstrate both in numbers and in facts why Alzheimer's matters. I look forward to seeing you, and all the others you'll recruit, in Washington.
Harry Johns President and CEO Alzheimer's Association
Please contact the Alzheimer's Association at info@alz.org
Today's post is a beautiful article written by Phil Bolsta. Thank you, Phil, for sharing this with me.
On a recent Thursday night, my dad slept in his own bed in his own home for the last time. He just didn’t know it. He probably never will. He was to spend Friday night—and surely the rest of his life—in a nearby nursing home.
His memory had been failing for at least a decade but it wasn’t until a warm September evening six years ago that I truly became alarmed. In my mind, it was the night he veered off the main highway of life and began weaving erratically down Alzheimer’s Avenue.
He had headed the stats crew for University of Minnesota football games for forty years, and as was his custom, he was going to sleep over at my metro-area townhouse after the game rather than drive an additional seventy miles to his home in St. Cloud. I didn’t expect him until after midnight; at a quarter to one, the phone rang. He was lost. He was calling from the Hopkins House Hotel a couple of miles away. I cheerfully told him it was no problem, that all he had to do was head east on Highway 7. He said he didn’t know which way east was, which startled me. I then heard five words that sent a chill up my spine. In a soft, sweet voice, he said, “I’ll never make it, hon.” I paused for a moment, then said, “I’ll be right there.” I drove over and he followed me home.
It was another couple of years before he stopped driving altogether. A year after that, my mom began bringing him to the St. Cloud Veterans Administration Medical Center for adult day care. it was a godsend for both of them. He loved the staff, loved to swim and exercise and, best of all, loved to while away the time working on arts and crafts projects. My parents’ house is filled with these little treasures. A pink ceramic piggy bank he painted stares happily down at me from a shelf as I write this.
He was very happy at the V.A. until just a couple of months ago. When he no longer could follow simple instructions and began needing one-on-one attention even to color a picture, the staff gently told my mom it was time. At home, when he was unable to shower in the morning without help, my mom knew she had run out of options. With a heavy heart, she drove him to the nursing home Friday morning.
Lately, I’ve been thinking a lot about a man named Roger Delano, who contracted a rare and incurable condition called transverse myelitis, an inflammation of the spine that causes paralysis. Delano, who recounted his experience in Self-Realization magazine, said he was unfazed when a doctor told him he would never walk again. Indeed, thanks to his unshakable faith, he was able to walk out of the hospital under his own power nine days later. Here’s what he wrote:
I knew that everything that was happening to me was up to God, that He was the only healer. I felt safe, knowing I was surrounded by the overarching mantle of His perfect care. Whatever God brought to me, I wanted. Even if I retained all of the mobility of a flowerpot, it didn’t matter. I was still the same, the vehicle of expression had changed, that’s all. A flowerpot can still hold a beautiful flower.
Some would say that my dad’s slow descent into oblivion—into flowerpothood—is an unspeakable tragedy. I prefer to view it as the natural unfoldment of a divine plan, the details of which I am not privy to. As Richard Bach so eloquently stated ,”The mark of your ignorance is the depth of your belief in injustice and tragedy. What the caterpillar calls the end of the world, the master calls a butterfly.”
As my dad slips ever more deeply into his cocoon, I know the glimmer of recognition in his eyes will soon begin to flicker and fade. But that’s okay. With a hug, a kiss on the cheek and a shoulder rub, I can still communicate with him through the language of the heart. Besides, I will know who he is—and that he will forever be who he always was.
And when the day comes that the changeless, eternal essence of who he is bursts forth, free to soar once again, I will hit my knees and thank God for giving me the gift of being my father’s son.
In the picture I’d seen of Rich on the internet prior to meeting him, he has short brown hair and a full beard covering his face. He’s wearing a white T-shirt under a denim blue, button-down shirt. He is not smiling. He looks menacing. It occurs to me that the photograph could pass for a police mug shot!
In person, he appears nothing like this unflattering picture of him on the internet. Rich is blond and smiles with blue eyes that are kind and sparkle. His face is clean-shaven, smooth and pink, the kind of gentle face my grandmother would’ve unabashedly approached and patted on both cheeks while saying, “Aren’t you handsome?” He looks at least a decade younger than his online picture and even younger than he is. Rich is fifty years old.
I learn that Rich has a masters degree in journalism and was the managing editor at a major newspaper for four years when his first symptoms began. It had been his job to assign stories to writers and photographers and edit stories. He made sure everything came together. He was highly competent and loved his job. He loved the written word.
Suddenly and inexplicably, Rich became tired, the kind of abnormal tired that sleep could not restore.
“My job typically needed me twelve hours a day, six to seven days a week. I’d go to work and last at my desk for ten minutes.”
He was diagnosed with Chronic Fatigue Syndrome. He could no longer work. Everything stopped.
“I know fatigue is a part of Alzheimer’s disease, and I know this disease is very strange and shows up differently for different people. But I still don’t know if the fatigue was due to Alzheimer’s or something else.”
His next symptom didn’t fall under the classic heading of ‘forgetting’ either.
“I started experiencing auditory hallucinations. These are very disturbing. I’d be in another room, and I’d hear the TV on, but I wouldn’t remember turning the TV on. I’d go in the other room, and the TV wasn’t on. I’d think, ‘Why am I hearing the TV?’ So I’d turn the TV on. Now I’d hear the actual TV AND the TV that I was hearing in my head.
Or I’d be listening to the stereo to a CD that I’ve been listening to for thirty years, and I know well what it sounds like. Then this harpsichord music would begin playing over it. And I’d think, ‘Well that shouldn’t be there, that doesn’t have anything to do with this!’ So I’d turn it off, so the CD music wasn’t playing anymore, but the harpsichord music was still there.”
About half of people with Alzheimer’s disease experience auditory and visual hallucinations. But Rich didn’t know this at the time.
“Then I was getting lost. I’ve pretty much lived in Los Angeles for most of my life and, I’ve been driving since I was sixteen years old. I was going to places that I’ve been to a thousand times, and I was just completely getting lost and not knowing how to get back. And again, I know this city like the back of my hand. I know it’s a complicated city, it’s not like living in a small town, but you drive Los Angeles. I went to school at USC. I know this city. And I was getting off the freeway and not knowing where I was. I was getting freaked out. My doctor just kept poo-pooing it and dismissing me. He really just didn’t listen to me.”
His doctor told him he was too old to have schizophrenia. He told him he clearly wasn’t depressed. Rich knew what he didn’t have. But he didn’t have any answers either.
So how did you get to a diagnosis of Alzheimer’s?
“My insurance changed, and I saw a new doctor and told him what had been going on. He said, ‘I don’t like the way this sounds’ and sent me for an MRI, a PET scan, and neuropsychological testing.
So I went and had the MRI and the PET and didn’t know the results. Then I went for the neuropsych testing which was eight hours a day for two days, and it actually spilled over, so it was probably a little more. It was exhausting. This may sound funny, but while I was taking the test, I was blowing it, but I didn’t know it. And she (the woman who administered the test) didn’t give it away. She just kept saying, ‘Good! Great!’ Encouraged by this, I would continue reading passages and answering questions. I thought I was acing the test! I wasn’t aware of this at the time, but she had me read at the twelfth grade level, and I got all the answers wrong. And she just kept moving down—eleventh grade, tenth grade, nineth, eighth, seventh. She stopped when I could finally answer some of the questions right, somewhere at grade school level. I was completely unaware that I wasn’t getting them all right.
At the end of the last day of testing, she had her report and my doctor had the scan results, and we all had the conversation. The MRI was clean, but the PET scan showed atrophy and hypoperfusion in the frontal, temporal, and parietal lobes. And all the mistakes I’d made in the neuropsych tests made sense in terms of where the deficits were on my PET scan. The doctor told me I had Alzheimer’s disease.”
What did hearing those two words do to you?
“I was really devastated. This was never on my radar at all. I was thinking brain tumor. Not that I wanted one, of course, but that’s what I was thinking.”
How did your life change after diagnosis?
“Emotionally, I went to a very dark place. I don’t talk about this too much, but I really did consider suicide. My mind went to where most people’s minds go when they think of Alzheimer’s. I kept thinking of lying in a bed somewhere, and I didn’t want to. So I thought, ‘Why not just cut to the end now?’ For about two months, I was in really bad despair. Then I talked with Michelle (the Director of Programs at the Los Angeles Chapter of the Alzheimer’s Assocation). She spent a couple of hours with me and listened to me and referred me to an early stage support group. That was really the turning point for me, having a place to connect with other people. That very first support group, I met Jay, and we went to lunch. We just have this connection, that kind of bond with someone where you’re able to talk openly about what you’re going through.”
Through his support group in Los Angeles, through online support groups, and through the Early Stage Advisory Panel for the National Alzheimer’s Association, Rich has forged many new and intimate relationships with others who have young onset Alzheimer’s. Finding others navigating similar waters gave Rich what he needed—real life examples of people living with Alzheimer’s. Not lying in a bed somewhere.
How did your existing relationships change after diagnosis?
“The person who has known me the longest has had a really hard time with this. She kept saying, ‘You don’t have this. Don’t say it. They’re wrong.’ Whatever process I had to go through to accept my diagnosis, get beyond my own denial, and deal with it, it was painful. But I went through it, and I accept my diagnosis. I want to tell people like her, ‘Don’t make me try to convince you for fifteen minutes that I have Alzheimer’s!’ But I have to go through that with people. With this one friend of mine, I had to keep going through this with her. She just wouldn’t believe me.
Then, I’ll tell her a story about me forgetting something that could never be mistaken for normal, and she’ll go to the other guardrail. Now she’ll say, “You can’t live at home alone anymore! You can’t be taking care of your mother! You need to sell your house!” Suddenly, I’m completely incompetent. And before that it was all, ‘There’s absolutely nothing wrong with you’ over and over. There’s no gray area. It’s just either or.”
I think this is a hard thing for people who aren’t familiar with Alzheimer’s Disease to understand, that it isn’t zero to end stage. When you were first diagnosed, your thoughts went straight to being in the fetal position in a bed somewhere, right?
"Right. I’ve learned differently."
Tell me what a good day is for you.
“A good day is going to my support group, meeting with friends, staying connected with people. I like reading the New York Times. It makes me feel connected to the world. But when I read the newspaper now, it takes me so long to read it. I’ll read an article and two minutes later have no comprehension of it. So I’ll have to read it again and again and again. It’s really frustrating, especially because of what I used to do for a living. I used to not only read stories but edit them and make them better. So it’s really disconcerting to me. Audiobooks are somewhat easier. I sometimes put things on my iPod and listen to them. I sometimes have better recall aurally. And if I like something, I’ll put it on again. And it’s almost as if I haven’t heard it before. That can be nice because it’s like experiencing something all brand new.”
What did you hope for your future before Alzheimer’s disease?
"My dream was to live in New York and work as a journalist for the New York Times."
In this season of giving and sharing, I'd like to share with you this wonderful story written by my friend, Jade Angelica, founder of Healing Moments---
Yes, Virginia, there is a Santa Claus by Jade Angelica
It was the Christmas season. As I walked down the long corridor admiring the festive holiday decoration, I noticed Virginia. She appeared restless and agitated. As I passed by her chair on my way to the craft room, Regina leaned forward and reached out to me with her small, delicate hand.
Almost whispering, she said, “Can you come here? I have to ask you something.”
Moving close to her and taking her reaching hand into my own, I bent down and looked into her eyes. “OK,” I said.
With grave sincerity, she asked, “Is Santa real?”
From the urgency of her expression and the firmness of her grip, I knew the answer to this question was deeply important to Virginia. I also knew, instinctively, that in this moment, the answer to her question was YES.
“Yes,” I said, returning her firm grip. “Yes, Santa is real.”
She relaxed her grip ever so slightly and replied, “I thought so. But they are trying to tell me there isn’t one.”
“Who’s telling you this?” I asked.
“Well, I don’t want to say,” she replied. “I don’t want to get anyone in trouble.”
“Oh no. You mustn’t tell then,” I said, reinforcing her choice to protect the doubters.
Still clearly upset by the quandary, Virginia leaned closer to me and asked, “But what should I do now?”
Taking both of her hands into mine and looking deeply into her eyes, time stopped for me. It was moment of true connection with Virginia when I replied, “You just keep believing. You just keep believing.”
“Yes.” She took a breath. “Yes. I’ll do that.”
“Just keep believing.” I repeated this over and over like a mantra.
“Thank you,” Virginia said, her sweet smile revealing a row of missing front teeth. “I feel so much better.”
She let go of my hand and sat back in her chair with a sigh of relief, peaceful at last.
Virginia is not the real name of the one hundred year old woman who asked me if Santa is real. I didn’t know her name when we spoke. It’s possible that she didn’t know her name either. Virginia lives in a nursing home on the same floor as my mother. Both women suffer with Alzheimer’s Disease.
Receiving a question about Santa’s existence from a woman who is one hundred years old caught me by surprise, and at first I wasn’t sure about how to respond. Very quickly, however, I remembered the importance of being present in this moment and the healing implications of meeting person’s with Alzheimer’s in their current reality, which for Virginia might have been Christmastime, 1915.
As I reflected on my conversation with Virginia, I realize it was both an endearing and a profound experience for me. After I left her and walked on toward the craft room to work on a project with my mother, I noticed that I felt better, too…. more peaceful, more joyful.
I also felt inspired. From the intensity of her question, Virginia could have been asking me if there is a God. Given the course of Alzheimer’s Disease, every person afflicted with Alzheimer’s and their families and friends touched by this illness might have wondered about this from time to time. Or, out of her history and the circumstances of Virginia’s life – or any of our lives – we might sometimes wonder if there is really a reason to hope – or if there is justice or love, or if there will ever be peace in the world. We all might have doubts.
Everything about this encounter was a surprise for me: the question of Santa’s existence posed by a woman one hundred years old; knowing with certainty that “Yes” was the healing answer; and the power of my own words to bring comfort to Virginia in a time of confusion. Mine was a faithful reply: In the face of doubt and fear and resistance, just keep on believing in all things good.
After Mom went to bed, I looked for Virginia to say good night, but I couldn’t find her anywhere. I’m hoping she slept peacefully that night, still believing in the Good Giver of Gifts. I did.
I've been doing a lot of pre-publication interviews for STILL ALICE lately. In one of these, I was asked, "What's your motto?" I had to think for a minute, and then I said,
"Say YES whenever possible."
I'd never been forced to put this idea into words before, but I do believe in this philosophy, and it guides me a lot in my life. Since that interview, I've started thinking more about mottos and how they can influence how we choose to live. Barack Obama has a couple of great ones,
"Change." and "Yes we can!"
I asked my friends who have dementia what their mottos are, and I've posted them here. If you have a motto, a life lesson, or advice you'd like to share, please feel free to add a comment here, and I'll add it to the list.
What is YOUR motto?
At the time I started on my journey of getting a diagnosis, I heard this song by Tim McGraw, Live Like You Were Dying. This song and the words have the meaning of the rest of my life. I am really trying to "live like I was dying." --Edye
My earlier mottos have lost much of their relevance for me, but the one that has come to be the most dear to me is from an ad in a yoga magazine in 2002 . It's pretty tattered by now. :-) It is a pen & ink drawing of a Buddha on a surfboard on a huge snake of eternity and the motto is: "In the face of eternity....Style" Which to me means: Don't go out with a whimper. Savor every moment! Ride the wave of life into the beyond! --Jaye Lander, 62 this month, Early Onset Alzheimer’s Disease
I keep this with me as I advocate: "Change happens when ordinary people see extraordinary people, get to know them and see what they can do." (as read in The Vancouver Sun newspaper, May 31, 2008) --Jim
I have three mottos that I go by. The first two are quotes by Helen Keller: "Alone we can do so little; together we can do so much" and "Life is a daring adventure or nothing." Then my personal one is: Keep on keeping on! --Lynn Jackson
“You are mostly measured in life by how you deal with your losses and reversals. Handle them with grace placing positive spin on them.” This is my working motto/theme. I am a 72 year old retired trial lawyer who is Alzheimer’s Afflicted. I was diagnosed 2 years ago in Early Stage. I am working hard at staying here for as long as I can. My intent while here is to make a difference advocating for economy in patient long term care and letting anyone interested know it is not nearly as bad having it as worrying about getting it. --Mike Donohue
"I don't have time to worry about what I can't do -- I'm too busy enjoying what I can do." And "Nothing I've seen since is as scary as the bombs falling on the farm in WWII when I was a little girl." --Jenny
Live in the moment -- life's too short to worry about the future. Enjoy every day you have. --Kris Bakowski, Early stage Alzheimer's, 53 years old.
My favorite motto is: "Act enthusiastic & you'll be enthusiastic." It has been my favorite for many years and still applies. Guess it's sort of like “fake it until you make it.” I also believe our ultimate purpose in life is to help others. --Sharon in KS, diagnosed with FTD in 2/2007 & changed to MCI in 9/2008
"I'm living my life like there's no tomorrow." And that boils down to spending as much time as possible with my family and friends, and doing as much music as time allows. --Jay
I would like to share Kris' motto "Live in the moment -- life's too short to worry about the future. Enjoy every day you have" and include "Don't worry. Worry alone will not improve the out come. Be happy. Seek happiness" --Darryl White - from the frozen tundra of Wisconsin
" Whatever you can do, or dream you can, begin it. Boldness has genius, power and magic in it." Goethe. --Chuck Jackson
Why take medication for Alzheimer's when they don't work?
I've heard this question too many times to count. My answer has always been anecdotal, second-hand:
But they do!
Finally, we have a scientific answer confirming what I've suspected and witnessed. Dr. Alireza Atri and his colleagues at Massachusetts General Hospital published the first long-term study of the real-world use of cholinesterase inhibitors, like Aricept, and Namenda in the July/September issue of Alzheimer Disease and Associated Disorders. They found that patients taking BOTH Aricept and Namenda declined less than patients taking only Aricept and even less than patients taking no medication.
Did these patients still decline? Yes.
Is this combination therapy a cure? No.
If you have Alzheimer's, is it worth getting on BOTH medications as soon as possible? According to the results of this study and what my friend Bill says, Yes.
Bill: My doctor referred me to a psychiatrist, and he immediately put me on Aricept and Nameda.
Me: How did he figure out you had Alzheimer’s?
Bill: He didn’t. He said to me, ‘I’m going to do one thing. You’ve been working on this thing for four months. Your doctor doesn’t know what it is. I have no idea what it is. But I’m going to put you on two medications. If in fact you have Alzheimer’s, and we confirm that a year from now, because it’ll take that long, you’ll have already been on the medication. If we don’t put you on the medication, you’ll have lost all of that cognitive ability, and you’ll never get it back.
It’s different today, with the medications we have. When my Dad had this, when they finally found out what was going on, it was, Make him as comfortable as you can. There were no ways of medically caring for these people then. If anything, they were sedated, to make them less…less…less…ahh”
Me: Agitated?
My stomach sinks as soon as I hear myself offer the word, and I hold my breath. Whenever I encounter someone with Alzheimer’s struggling to find a word, I have to work to keep myself from becoming an enthusiastic guesser in a game of Charades. My instinct is to jump in and make a stab at it. But if the word I suggest isn’t the right word, then my interruption might derail his train of thought entirely. Luckily, I picked the right one.
Bill: Yes, thanks, agitated. He said to me, ‘You’re just too young to give up on.’ So what this doctor did in good faith, putting me on these two medications, turned out to be a God send for us. And I don’t think that’s happenstance. I think things work for a purpose. It took me about eight months to get in to see the neurologist I needed to see. I took the neuropsych testing twice, for two days. That confirmed it.
Me: What went through your head when you were told you had Alzheimer’s Disease?
Bill: I was relieved. I’d been searching for so long. What started out as a four-month journey turned out to be an eighteen-month odyssey. I was relieved. I’ve never been angry, never been afraid. Now there are people who are angry, who are in denial, who are frustrated and feel a stigma associated with it. There are many people in my support group who are angry. Anger, in denial, frustrated, scared. I am none of those. I’ll be the first one out saying I’ve got Alzheimer’s. It is a disease I have. It is not who I am.
Last week, someone innocently asked the DementiaUSA email group a not-so-innocent question. He asked if anyone knew how someone with dementia would go about getting a handicapped parking permit. As a person with dementia who still drives, he wants to use the handicapped spaces as a way of helping him remember where he parked his car.
Man, did he unwittingly stir the pot! The debate this question precipitated went on for days.
Here was one side:
If you can’t remember where you parked, it’s a sign that your symptoms are bad enough that you shouldn’t be driving anymore. You might not remember where you are or where you’re going and get dangerously lost. You might not remember how to operate the car or remember how much time you need to stop or to complete a turn in front of on-coming traffic and cause an accident. You might get hurt or hurt someone else, or worse, kill yourself or someone else. If you have Alzheimer’s and can’t remember where you parked your car, the solution isn’t ‘get a handicapped parking permit.’ It’s time to give up your license.
And here was the other side:
I would sometimes forget where I parked my car well before I had dementia. People without Alzheimer’s who leave a mall and can’t remember where they’d parked don’t hand over their keys. I drive slowly and cautiously and only in familiar places. I’ve never been in an accident. I only drive with my husband/wife, never alone, and he/she acts as my co-pilot.
As I was ‘lurking,’ reading without chiming in, I thought about my own recent experience losing my parked car.
Just the other day, I, a 37-year-old woman without dementia, stepped outside the grocery store, stared into the sea of mostly silver SUVs, and thought, “Now where the heck did I park?” I then spotted my car almost instantly but only because two giant kayaks, one bright orange and one bright blue, were perched high on its roof. Clearly and thankfully, forgetting where you parked isn’t criteria for giving up your driver’s license.
I was also reminded of an enlightening conversation I had almost exactly a year ago with my friend James who has young onset Alzheimer’s. Here is his perspective.
“I want to let my capabilities drive what I can do. I don’t want to hand over what I still have to this disease before it insists on taking it.
I didn’t want to give up my keys. Driving to me is one of the core things that allows you to maintain some engagement and freedom in the world, and when that’s gone, you’re dependent on the rest of the world to get you around.”
But driving with Alzheimer’s? Surely this combination is a tragedy waiting to happen, I’d thought. Alzheimer’s compromises the ability to multi-task. It causes spatial disorientation, impairs depth perception, and narrows field of vision. It’s easy to imagine the many things that could go wrong. And they do.
We see it in the news all too often. I remembered hearing about a woman from Wyoming who, at age fifty-eight and diagnosed with Alzheimer’s, got confused on her way to the airport to pick up her daughter and ended up over 650 miles from home. Police found her body about a mile from her car four days later.
The risks are real and potentially life threatening, for the driver and for others. At some point, James shouldn’t be behind the wheel. But how can James, with Alzheimer’s obscuring his ability to self-evaluate, recognize that point?
James didn’t guess, argue, or insist. He took an intensive driving exam. They tested his vision and his reaction time. They put him in video simulators. They even tested his memory. Then they put him behind the wheel. He drove on highways, side streets, through construction routes with detours, and parallel parked.
James passed the test with flying colors. He relies on this objective score to tell him whether he can continue to drive, not on the piece of paper that says he has Alzheimer’s. He has an agreement with his family that he’ll take the test every year. If the results show a decline, if he’s no longer a good candidate for driving, or if at any time anyone in his family becomes uncomfortable with his driving, he’ll give it up. And he won’t argue about it.
“But even then, I hope people will offer support. The answer isn’t ‘well now you should stay at home,’ but ‘now let’s consider some alternatives.’ Is there a bus service? What programs are available? Are there volunteers?”
So, for now, James drives with Alzheimer’s.
At the end of the heated online debate, the parties agreed to disagree. There was no consensus, no black and white, no right and wrong. Some remain drivers, others have become willing passengers.
And I remain grateful for the brightly colored kayaks on the roof of my car.
It’s the #1 rule in Improvisational Acting. You say, “Yes, and,” to everything you are offered. As actors cooperating to create a fictional reality on stage, you agree to agree, or nothing works.
If your fellow actor says to you, “Come for a ride on my new magic carpet!” your job is to ‘accept the gift’ and join in:
“Okay! This is a beautiful weave, what is it silk?”
or
“I’d love to! This magic carpet is way nicer than my cousin Aladdin’s. His is a ’91, it’s all frayed and worn, and it stalls out all the time. Where did you get it?”
or
“I’m in! Where should we go?”
And the conversation, the relationship, can continue.
If you say:
“No. I don’t want to.”
or
“No, that’s not a magic carpet. That’s an ordinary rug.”
If you deny or negate the reality your fellow actor has offered to you, then you will kill your opportunity to interact in a way that grows and builds and leads you somewhere. If you say No, the scene is dead.
I recently had the good fortune to participate in a Healing Moments workshop which applies this Improvisational Acting rule to communicating with people with Alzheimer’s. By saying Yes—and, by agreeing to the reality a person with Alzheimer’s is experiencing, we can meet them in the present moment and find opportunities to interact in ways that grow and build and lead somewhere.
Here is the exercise I remember most. I was asked to say a simple statement, something I believe to be true. I said, smiling, “I have the most beautiful 6-month old boy.”
The instructor, looking me straight in the eye and without smiling, said, “You do not have a 6-month old baby. Your kids are all grown. You don’t know what you’re talking about.”
My turn came around again.
“It’s a glorious, sunny day outside.”
“No, it’s not. It’s dark and cloudy, and it’s going to rain.”
Here’s what I noticed. Even though I knew this was just an exercise, I didn’t want to talk with this woman. I didn’t like being told I was wrong, I didn’t like the look on her face, and I didn’t like her tone of voice. In fact, I felt my emotions stirred by the interaction, like I was readying to argue or fight.
When the instructor said, “Yes—and,” I felt great. I liked her and wanted to say more.
“I have the most beautiful 6-month old boy.”
“He is gorgeous. Such intelligent eyes. You’re so lucky to have such a beautiful baby.”
“It’s a glorious, sunny day outside.”
“It is. I think the daffodils are in bloom now. Those are my favorite flowers.”
In an improvisational theatre scene, in a conversation with someone with Alzheimer’s, in life, we don’t know what is going to be said or done next. Instead of trying to control what happens or negate what happens, try being present with the person you’re with, go where they ask you to go, and see where it leads you together.
For more information about Healing Moments programs and workshops, go to www.HealingMoments.org
An Alzheimer's Ribbon is available at Caring.com. Please make your own ribbon and post it on your blog, social networking page, or anywhere else you've got a web presence! For each ribbon posted, Caring.com will donate $10 to the Alzheimer's Association.
ALZHEIMER’S DISEASE SUPERSEDES DIABETES AS SIXTH LEADING CAUSE OF DEATH IN THE UNITED STATES
CHICAGO, June 12, 2008 -- Alzheimer’s disease is now the sixth leading cause of death in the United States, according to the Centers for Disease Control and Prevention (CDC) National Center for Health Statistics. The CDC estimates that 72,914 Americans died of Alzheimer’s disease in 2006. With an unprecedented historic population shift of 78 million aging baby boomers in the country and this disease poised to strike 10 million boomers - it is clear this escalating epidemic must be addressed now.
Today, as many as 5.2 million Americans are living with Alzheimer’s disease. The Alzheimer’s Association’s 2008 Alzheimer’s Disease Facts and Figures report revealed one out of eight baby boomers will develop this disease that currently has no effective disease-modifying treatments to halt or delay its progression. Experts predict by 2010, there will be almost a half million new cases of Alzheimer’s disease each year; and by 2050, there will be almost a million new cases each year.
“The CDC’s announcement that Alzheimer’s disease jumped from the seventh to the sixth leading cause of death should serve as a wake-up call to the nation,” said William Thies, PhD, vice president of Medical and Scientific Relations at the Alzheimer’s Association. “The fact that there are no effective treatments for Alzheimer’s has allowed the disease to pass diabetes. It is vitally important that we increase Alzheimer’s research funding to slow or stop the progression of this devastating disease.”
Researchers are closing the gap in developing accurate ways to diagnose and treat Alzheimer’s. Although there are several promising drugs currently in Phase III clinical trials, insufficient research funds are committed to research focused on Alzheimer’s disease treatment and prevention. This situation is further compounded by the fact that for the past five years the NIH budget has been essentially flat. The personal and economic impact of Alzheimer’s is so large that no one entity can solve the problem alone. It will require all levels of government and the private sector working together to diminish the human and economic cost. It must begin with accelerating research.
The CDC also reported that while deaths from Alzheimer’s disease were on the rise, other chronic conditions were on the decline. Between 2005 and 2006, the largest decline in age-adjusted death rates occurred for influenza/pneumonia (12.8 percent), and also included chronic lower respiratory diseases (6.5 percent), stroke (6.4 percent), heart disease (5.5 percent) diabetes (5.3 percent), hypertension (5 percent), chronic liver disease (3.3 percent) and cancer (1.6 percent).
The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit www.alz.org.
I can’t really talk about Jenny without including Don. Don is Jenny’s husband. And more than anyone else I’ve met with Alzheimer’s, they are in this experience together.
I meet up with Jenny and Don at a café. Around lunchtime, it’s crowded and noisy with customers. We decide we need to find a quieter and less distracting place to sit and talk. Jenny is thirsty, so Don leaves us to buy a bottled water for her before we go. He has just finished telling me that Jenny fell outside on the pavement.
Are you cut?
“What do you mean?”
Are you bleeding anywhere?
“Why?”
You just fell?
I’m unsure that I want to pursue this line of questioning. I don’t want to shine a spotlight on her Alzheimer’s like this. I don’t want to make her uncomfortable.
“I did? Is that what he said?”
Yes.
“Oh, then I must’ve. I’m fine.”
She smiles and puts me at ease. So much about Jenny strikes me as vibrant and playful and young in spirit. She’s wearing a hot pink shirt and crocs. Her gray hair is pulled back tight into a high ponytail. Even her name, Jenny, and not Jenn or Jennifer, is fun.
Don returns with her water, and we head off and find a quiet spot.
Tell me about a typical day for you.
“I always go out. I walk a whole lot. We live near water, so I love walking down by the…the….the…”
“Lake Michigan,” says Don.
“Lake Michigan, yes. I love walking. I always have.”
Do you walk alone?
“Oh, yes.”
Where do you live?
“Up at the top…it looks right down to the water. It’s wonderful. It’s a lovely view. I walk there and almost anywhere. I walk up to…within…ahh, it’s so clear to me.”
“The Art Institute,” says Don.
“Yes, the Art Institute. The Cultural Center. You know, it’s very nice.”
Jenny’s anomia is quite severe and interferes with almost every answer she gives.
“I go to concerts at the Cultural Center. No set schedule. I can’t do as much as I used to do. But I always want to walk forward. I get angry at people who don’t want to let me do things or insist that I do or don’t, whether it’s silly or important. I don’t like those rules. On the other side of it…I…it’s doing what I really love to do…is spend time down close to the water.”
I wonder if her experience of this symptom is frustrating or embarrassing. It doesn’t seem to bother her. She appears to be genuinely enjoying our conversation.
What is it like having Alzheimer’s?
“I don’t think about it. I think I know all I want to know about Alzheimer’s. I do most things now that I did before. I definitely got annoyed when I found out I had it. But I thought it was me. It was a relief to know it was something other than me causing the problem.”
“Jenny was diagnosed April 1, 2002. Some joke! Her major symptom was agitation. As soon as she was diagnosed, the agitation stopped,” said Don.
Tell me about what you like to do at home.
“I look at some of the old bits of…I’ve been putting things away for years and years and years and years.”
“Letters to your mother. What she’s been putting away. She’s been going through letters she wrote to her mother,” explains Don.
“They’re steamy!” Jenny laughs.
She doesn’t remember her own letters to her mother when she reads them, but she enjoys them, often laughing out loud as she reads. She doesn’t mind that she doesn’t remember writing them or the stories as belonging to her own history. This feels normal to her. The stories in those letters happened so long ago, she feels that anyone could forget them. She’s not disturbed at all. She enjoys the letters for the content that’s there and doesn’t see them as evidence of a woman she once was who she can no longer remember.
“I sometimes look at some of the old stuff. I was an only child.”
“For a while you were. You have a sibling. There are two of you,” says Don.
“Oh, yes, that’s right. Anyway…”
Jenny and Don have many of these exchanges. Jenny can’t find a word, and Don fills in the blank. Jenny says something inaccurate, and Don corrects her. And she then agrees or disagrees or chooses to ignore him and continues on in stride, unruffled. Don is never patronizing. He’s not correcting an Alzheimer’s victim. The respect he has for his wife is obvious and enormous, and I can’t imagine it has been diminished at all by this disease. These little sidebars feel like the ordinary exchanges between a husband and wife who’ve been married for a long time. Of course, what Jenny can’t remember isn’t ordinary. But they both treat it that way. And it moves the conversation along. No one is embarrassed or upset or apologizing.
“I’m English to begin with. I came here in…”
She looks to Don.
“’64.”
“Yes, ‘64, and I actually didn’t like it very much. It seemed a stuffy place!”
She laughs.
“Well, she’d been in Africa for five years.”
“I was in Nigeria for four years, so I’d already done all that.”
What were you doing in Nigeria?
For the rest of my conversation with Jenny, we don’t talk about Alzheimer’s. She tells me about Nigeria, about college at Oxford, about her former job in health advocacy, about her travels and friends. At one point, I realize that we don’t have much time left together, and I’m tempted to ask her to get back to talking about Alzheimer’s. But thankfully, I don’t. Jenny isn’t about Alzheimer’s. Don isn’t about Alzheimer’s either. I remember what she’d said earlier:
“I don’t think about it.”
Her Alzheimer’s is like a naughty toddler throwing a tantrum in the middle of the room. If they were to try to tame it, bargain with it, or beg it to stop, if they became embarrassed or enraged by it, they’d only be feeding energy into it, making it bigger. It would take over and define their experience. Instead they ignore it and carry on. It’s there, but they don’t focus on it.
When I think back on my conversation with Jenny, I picture sunny walks along Lake Michigan, concerts at the Cultural Center, and Africa. I remember her pink shirt, her ponytail, and her laugh. And I remember the big hug she gave me when we were done.
Lisa Genova, Ph.D. author of STILL ALICE, excerpted from LIVING ALZHEIMER'S
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research.
Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
Alzheimer's Association National Office, 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601-7633
Alzheimer's Association is a not-for-profit 501(c)(3) organization
Solomon Carter Fuller, M.D., was among the first known black psychiatrists and a pioneer among Alzheimer's Champions. The grandson of a slave, Dr. Fuller worked along side Dr. Alois Alzheimer, who discovered the traits of the disease in 1901. Dr. Fuller is responsible for countless contributions to the field as a researcher and educator. The Solomon Carter Fuller Mental Health Center in Boston is named in his honor.
Solomon Carter Fuller, M.D., was among the first known black psychiatrists and a pioneer among Alzheimer's Champions. The grandson of a slave, Dr. Fuller worked along side Dr. Alois Alzheimer, who discovered the traits of the disease in 1901. Dr. Fuller is responsible for countless contributions to the field as a researcher and educator. The Solomon Carter Fuller Mental Health Center in Boston is named in his honor.
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