Vancouver, Canada — With FDA approval of a brain amyloid imaging compound in early 2012 and the expected start in 2012 and 2013 of three clinical trials in people with pre-symptomatic Alzheimer’s disease, issues around disclosure of dementia risk status are becoming more urgent. Several research efforts have been reported at the Alzheimer’s Association International Conference describing the creation and evaluation of new risk disclosure methods, and the examination of related ethical issues.

Alzheimer’s is a devastating, progressive, and fatal illness. There is a movement in the Alzheimer’s research field to detect and treat the disease earlier – even before there are outward symptoms – so that people do not have to suffer from the debilitating memory and thinking problems that lead to loss of normal daily activities and independence, and eventually death.

A number of Alzheimer’s prevention trials are in the planning stages. They will be conducted in people without memory or thinking symptoms who are considered at-risk for Alzheimer’s on the basis of genetic and/or biomarker positivity.

A biomarker is something in the body that can be measured as an indicator of normal biological processes, disease processes, or changes in response to therapy. For example, cholesterol levels are a biomarker for heart disease. A variety of imaging and fluid biomarkers are under investigation in Alzheimer’s disease. Biomarkers allow investigators and clinicians to detect Alzheimer’s-related changes in the brain and other body systems prior to the onset of dementia symptoms due to Alzheimer’s.

“Biomarkers are being increasingly used in clinical practice and research trials to provide risk information for Alzheimer’s. The goal is to develop evidence-based methods for communicating this risk in effective and supportive ways,” said J. Scott Roberts, Ph.D., of the University of Michigan, School of Public Health. Dr. Roberts is chair of an AAIC 2012 featured research session where new research on disclosing risk information will be reported and discussed.

One of the most promising biomarkers is brain imaging using positron emission tomography (PET) scans that can show whether a person has deposits of an abnormal protein called beta amyloid, which is one of the hallmarks of Alzheimer’s disease. There also are well-established genetic risk factors, such as the APOE Alzheimer’s risk gene.

Based on current knowledge, APOE-e4 is the gene with strongest impact on Alzheimer’s risk. APOE-e4 is one of three forms of the APOE gene; the others are APOE-e2 and APOE-e3. Everyone inherits a copy of APOE from each parent. Those who inherit one copy of APOE-e4 have an increased risk of developing Alzheimer’s. Those who inherit two copies have an even higher risk, but not a certainty. Scientists estimate that APOE-e4 is implicated in about 20 to 25 percent of Alzheimer’s cases. APOE-e2 may provide some protection against Alzheimer’s.

Until recently, the presence of brain amyloid could only be confirmed by autopsy. Now it is possible to look for the protein in living brains using a special type of dye during a PET scan. These PET scans may help determine whether or not a person who is experiencing memory loss has Alzheimer’s disease.

“People with memory loss who test negative on a PET scan using the newly-approved dye do not have Alzheimer’s disease,” said William Thies, Ph.D., Alzheimer’s Association Chief Medical and Scientific Officer. “Their symptoms are caused by something else. If they test positive, the cause is likely Alzheimer’s, but that is not 100% certain because the presence of amyloid can be detected in other diseases besides Alzheimer’s. We do not yet know what the test means in people without symptoms. The predictive value of the test is uncertain.”

“The disclosure of test results to cognitively normal older people raises some important ethical issues because researchers and clinicians do not yet know how to interpret them. How will this biomarker information be gathered? When, how, and to whom will it be disclosed? How do we disclose it accurately while minimizing any potential negative impact? These are issues that must be addressed by the research and healthcare communities, with crucial input from Alzheimer’s families and other stakeholders,” Thies added.

The Alzheimer’s Association currently is working with the Society of Nuclear Medicine to develop guidelines for when an amyloid PET scan is appropriate and how it should be interpreted.

Disclosing Alzheimer’s disease genetic risk to people with MCI

The Risk Evaluation and Education for Alzheimer’s Disease Study (REVEAL) is a multi-center randomized clinical trial enrolling people with mild cognitive impairment (MCI) to investigate the impact of disclosing “imminent” Alzheimer’s disease risk information – specifically, the probability of progressing to Alzheimer’s within the next three years. The trial tests different methods for disclosing this information, including a method where genetic testing is used to refine the risk estimates given to study participants.

“We hope to learn how people with MCI and their study partners respond to health education and learning risk information,” said Robert C. Green, M.D., MPH, of Brigham and Women’s Hospital and Harvard Medical School. “We continue to evaluate how well participants understand the Alzheimer’s risk assessment and what they do with the information. We’re monitoring how the people with MCI and their care partners adjust psychologically and what health related and behavioral changes they make in response to the new information.”

Green and colleagues designed and are implementing an evidence-based procedure for risk estimation and an experimental trial of APOE genotype disclosure in people age 55 to 90 with MCI and their study partners recruited at four university medical centers (Harvard, Univ. of Michigan, Univ. of Pennsylvania, and Howard). Participants receive risk estimates for their chance of progressing to Alzheimer’s disease that are based on their age, MCI diagnosis and APOE genotype (intervention arm) or age and MCI diagnosis alone (control arm). Risks disclosed to participants range from 8-57% in the intervention arm and 25-44% in the control arm.

The research team developed graphics and language to facilitate communication of APOE genotype and numerical risk estimate. Both participants with MCI and their study partners are followed up to 6 months following risk disclosure to determine its impact on caregiver distress, health behavior, and insurance/lifestyle changes. To inform further development of educational materials, researchers will also evaluate how well participants understood the information that was provided to them.

“This is the first study to examine the impact of disclosing Alzheimer’s genetic risk information to individuals with MCI,” Green said. “We believe the findings from REVEAL will have important implications for clinicians and policy makers in informing the future practice of educating and treating people at risk for Alzheimer’s.”

Disclosing brain amyloid imaging results to people with MCI and their families

Brain amyloid imaging is increasingly recognized as a powerful tool for predicting whether people with MCI will transition to Alzheimer’s disease.  As this technology moves from the research setting into clinical practice, an emerging concern is that people with MCI may have difficulty comprehending their test results.

Given the lack of research on disclosing this information to people with cognitive impairments, Jennifer Lingler, Ph.D., of the University of Pittsburgh, Pennsylvania, and colleagues conducted a study to develop a standardized procedure for effectively communicating amyloid imaging results in the context of MCI, which is often described as an intermediate state between normal cognitive aging and Alzheimer’s.

Based on previous research and insights from a panel of experts in neuroimaging, neuropsychology, risk communication, regulatory affairs, and bioethics, Lingler developed scripts and visual aids that guide clinical researchers in disclosing positive, negative, or inconclusive amyloid scan results. Ten people with MCI and 10 of their family members participated in mock results disclosure sessions and provided feedback on the procedure.

The researchers found that:

• The great majority of participants reported that the session was “easy to follow,” (19 of 20) “included just about the right level of detail,” (17 of 20) and was “just about right” in length (17 of 20).
• All 20 participants rated the information as “clearly presented.”
• Eight of the 10 family members and seven of the 10 people with MCI correctly repeated their mock results back to an interviewer after the session.
• Analysis of interview data from the five participants with questionable comprehension suggested that (a) cognitive factors may explain problems with comprehension among those with MCI, while (b) emotional factors may underlie problems with comprehension among family members.

“Our study demonstrates that it is possible to provide people with MCI and family members with highly comprehensible and acceptable information about their brain imaging results of Alzheimer’s risk,” Lingler said. “However, since some of the participants had some difficulty, we recommend that a family member or friend be present, and that emotional support be provided, when imaging results are discussed.”

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“It’s a national disgrace that so many families dump their elderly parents in nursing homes and assisted living facilities. We need to become a nation of family caregivers. Sons and daughters should invite their aging and aged mothers and dads to live with them,” says trends analyst and forecaster, and family caregiver, Stephen L. Goldstein, Ph.D.

“Yes, you can!” Goldstein reassures families in his memoir/how-to, When My Mother No Longer Knew My Name: a son’s “course” in “rational” caregiving. It could be titled “the joy of caregiving!” It’s the first book families need to read, the caregiver’s “one-minute manager.” Each brief, compelling chapter turns what a son learned on-the-job into immediate help for others. Step-by-step, Goldstein traces how his caregiving role evolved from nominal to 24/7.

“I would never let my mother live in a nursing home,” he says adamantly. “Diplomatically, I had to convince her to move in with me when she was strong and healthy. Eventually, I learned how to deal with her dementia—finding a sandwich in the clothes dryer, changing her diaper (rarely, thank God!), keeping her from choking to death. Finally, I had to discover how to care for myself after she died.

“I wrote the book I never found before and while I was my mother’s caregiver,” Goldstein says. “There’s no theory. Strategically placed throughout the book are 75 practical tips that turn my experience into advice others can use. My narratives make caregiving real. My tips make it manageable—even joyful.” There’s a “Self-Assessment” so current and potential caregivers can benchmark and increase their ability to manage the often lonely, challenging, unpredictable, and overwhelming roles they may assume.

When My Mother No Longer Knew My Name is a one-man support group, written like a friend who’s “been-there-done-that,” talking anecdotally, but authoritatively, to a friend who needs help. It’s raw and gritty, funny and inspiring. It makes people weep, but also gives them hope they can overcome a mountain of seemingly insurmountable challenges, for which they likely feel devastatingly unprepared.

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The Alzheimer’s Association commends the Obama Administration for dedicating new resources in the fight against Alzheimer’s in a uniquely challenging fiscal year in advance of the first ever National Alzheimer’s Plan.

“This infusion of funds is important and the Alzheimer’s Association appreciates this step by the Administration,” said Harry Johns, President and CEO of the Alzheimer’s Association. “We are committed to working with the Administration, Congress and the Advisory Council on Alzheimer’s Research, Care and Services to ensure the development and implementation of an effective National Alzheimer’s Plan.

In order to meet the expectations of all Americans affected by this epidemic, the plan must address the critical need for care and support as well as accelerate research toward prevention, treatment and ultimately a cure.”

After the passage and enactment of the National Alzheimer’s Project Act with full bipartisan support last January, Americans affected by Alzheimer’s made impassioned demands for decisive action on Alzheimer’s during the Alzheimer’s Association’s nationwide public input campaign.

The more than 40,000 individuals who participated in the process live on the frontlines with Alzheimer’s disease. The struggles they face reflect the experiences of the estimated 5.4 million Americans living with Alzheimer’s and their 15 million unpaid caregivers. They are eagerly waiting to see if the federal government’s commitment to solving this crisis is proportionate to the magnitude of this disease.

Within just 38 years, as many as 16 million Americans will have the disease and it is projected to cost the country more than $1 trillion annually.

The Association will continue to support the process underway to develop the first National Alzheimer’s Plan led by Health and Human Services Secretary Kathleen Sebelius.  All of these efforts will help to ensure the nation is at last equipped to overcome Alzheimer’s – the public health crisis of this century – and meet the goal set forth by the Administration to prevent and effectively treat Alzheimer’s disease by 2025.

One of the Alzheimer’s Association’s recent contributions to this process has been to convene a taskforce of leading Alzheimer’s scientists to determine the scope of work and scale of investment need to achieve this goal. Results of this assessment are expected to be released later this month.

Image Courtesy of   https://www.facebook.com/actionalz

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Bill Edwards Presents and  the Las Vegas Convention and Visitors Authority (LVCVA) will celebrate the life and legacy of “The Greatest,” Muhammad Ali at the 16th annual Power of Love Gala on Saturday, Feb. 18, while raising funds in support of the Cleveland Clinic Lou Ruvo Center for Brain Health and the Muhammad Ali Center. ABC will televise the event nationally on Saturday, Feb. 25, at 7 p.m. EST/ 4 p.m. PST.

On Feb. 18, Bill Edwards Presents and Keep Memory Alive, the fundraising arm of the Cleveland Clinic Lou Ruvo Center for Brain Health, will transform the MGM Grand Garden Arena into a 70th birthday celebration for Ali designed to honor the boxing legend’s contribution to the world and raise awareness for Alzheimer’s, Huntington’s, ALS, Multiple Sclerosis and Parkinson’s, the disease “The Champ” has been battling since 1984.

Proceeds from the event will benefit the Cleveland Clinic Lou Ruvo Center for Brain Health’s work toward enhanced treatments and research of neurocognitive disorders and the Muhammad Ali Center in Louisville, Ky.

Performers and celebrity supporters slated to appear at the celebration include Lenny Kravitz, Sean Combs, Anthony Hopkins, John Legend, Queen Latifah, Cee Lo Green, David Copperfield, Andre Agassi, Stefanie Graf, Jim Brown, Randy Courture, Brad Garrett, Kelly Rowland, Robin Leach, James Gandolfini, Steve Schirripa, Chazz Palminteri and Sammy Hagar.

Boxing icons scheduled to attend the celebration include Sugar Ray Leonard, Ken Norton, Tommy “Hitman” Hearns, Roberto Duran, Angelo Dundee, and Leon Spinks. Even more big names from the entertainment and sports worlds will be added to the lineup as the event nears.

“This year’s Power of Love Gala will bring attention and funds to the important work being done at the Cleveland Clinic Lou Ruvo Center for Brain Health on a whole new scale,” said Larry Ruvo, Chairman, Keep Memory Alive. “We’re excited to have the opportunity to shed light on the fight to knock out neurocognitive disorders while celebrating the life and ongoing contributions of the legend, Muhammad Ali.”

“Muhammad Ali has been an inspiration to millions of people all over the world including me,” said Bill Edwards. ”My favorite Ali quote, ‘If my mind can conceive it, and my heart can believe it, then I can achieve it!’ I am honored to be associated with such a great event for a great cause that honors The Greatest of All Time.”

In keeping with its 16-year history, the Power of Love Gala will showcase a celebrity-chef-packed dinner featuring Tom Colicchio, Scott Conant, Michael Mina and Wolfgang Puck, a Dom Perignon reception and one-of-a-kind live and silent auction items. In addition, the evening will also include a birthday celebration for Ali, featuring performances and heartfelt tributes from some of the world’s hottest entertainers and sports icons.

The gala’s celebration for Ali aligns with the Cleveland Clinic Lou Ruvo Center for Brain Health’s recent launch of a landmark study examining the long-term brain health of professional fighters.

Aiming to improve the safety and health of fighters, the study will help determine whether magnetic resonance imaging (MRI) of the brain, along with other tests, can detect subtle changes in brain health that correlate with impaired thinking and functioning.  Researchers hope the information uncovered by this research will eventually result in better ways to prevent permanent brain injury in not only fighters, but also in others who may suffer from brain trauma.

“We are thrilled to bring together some of the biggest entertainers, sports figures and celebrities in the world to salute Muhammad on this monumental evening.  Again, the People’s Champion is raising his fists high to support and bring awareness to these important organizations,” said Kraig Fox, Chief Operating Officer of CKx.

Scott Sibella, President and COO of MGM Grand, said, “Hosting this event is an incredible honor for all of us at MGM Grand and our parent company, MGM Resorts International.  The work that these organizations do to combat diseases that impact all of us is tremendously humbling and we’re thrilled to be playing a small role in the fight.”

“Promoting a Muhammad Ali fight sparked my career in 1966 and I’ve had the very fortunate opportunity to be involved in his legendary journey,” said Bob Arum, the founder and CEO of Top Rank, a professional boxing promotion company based in Las Vegas. “I’ve seen my career come full-circle by celebrating the remarkable life of a boxing legend and supporting his fight to end brain disorders.”

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After a two-day meeting of government leaders and private sector experts that focused on the proposed framework of an historic national plan to defeat Alzheimer’s disease, Eric J. Hall, founding president and CEO of the Alzheimer’s Foundation of America (AFA) and a member of the Advisory Council on Alzheimer’s Research, Care and Services established by the National Alzheimer’s Project Act (NAPA),on January 19 released this statement:

“Our nation is placing an intense and unprecedented focus on Alzheimer’s disease right now, giving hope to Americans that the bold recommendations and thoughtful discussion that emerged during his meeting of the Advisory Council and ongoing will result in a powerful plan that turns the tide of the disease.

“In the year since NAPA was passed by Congress and signed by President Obama, the Alzheimer’s Foundation of America has consistently sought input from family caregivers, clinicians, researchers, healthcare professionals, policymakers and the general public about their personal and professional experiences with Alzheimer’s disease, their recommendations for change and their hopes that the NAPA process goes beyond a ‘check the box exercise.’

Their voices formed the basis of AFA’s report ‘No Time to Waste,’ which provides hard-hitting recommendations that align with the draft plan being discussed by the Advisory Council. “Never before has our nation been poised like this to pursue and achieve what Americans facing this devastating brain disorder demand and deserve.

We are at a pivotal juncture to alter the current course of Alzheimer’s disease, and we must act aggressively yet realistically in order to carry the momentum forward.

“Since fiscal concerns and the growth of the Alzheimer’s population cannot go unnoticed, it is critical that we design this plan with incremental, fundable and attainable goals, which include substantially increasing our scientific knowledge surrounding the disease; preventing, delaying and slowing progression of symptoms; researching and implementing best practices of care; providing much-needed support services for families; and ultimately obtaining the cure we are all waiting for.

“There’s no doubt that we have no time to waste, but it will be vital to engage Congress and sustain their commitment in order to achieve a national plan to defeat Alzheimer’s disease and help countless families now and in the future. Much work lies ahead, but I am confident that we are on the right path toward the resolution of this crisis.”

The Alzheimer’s Foundation of America (AFA) released its “No Time to Waste” report in October 2011 in response to the mandate by NAPA for federal officials to develop an integrated national plan to defeat Alzheimer’s disease.  AFA’s report urges wide-scale public awareness campaigns, including messaging to drive earlier detection and to “shift the focus from fear to acceptance of the disease.”

Other calls for action include: a substantial investment in research toward the prevention, treatment, care and cure of Alzheimer’s disease; additional dementia training and reimbursement for primary care clinicians; and greater training and support for family caregivers of all demographics, including teenagers and ethnic populations, across the continuum of care.

At the Advisory Council meeting this week, Hall further recommended family-friendly workplace policies; tax breaks for expenses related to care giving of loved ones with Alzheimer’ disease; and Medicare-provided support services, such as respite care, that can greatly benefit both individuals with the disease and the health and well-being of family caregivers.   Image Courtesy of   https://www.facebook.com/AlzheimersFoundationofAmerica

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2012 Presidential Candidates are answering the calls from thousands of Alzheimer’s disease advocates around the country asking leaders how they would stop Alzheimer’s, a disease that affects 5.4 million Americans and cost the nation $187 billion last year.

Three presidential candidates – Newt Gingrich, Jon Huntsman and Michele Bachmann – are the first to release videos discussing how they would address the Alzheimer’s crisis and lead a national effort to stop the disease. The videos represent the first indication that the fight against Alzheimer’s will be an issue in the 2012 Presidential race. To view all three videos, please visit:http://www.usagainstalzheimers.org/alz2012/.

“Alzheimer’s disease will cost our nation $2 trillion over the next decade if we don’t act,” said George Vradenburg, co-founder and chair of USAgainstAlzheimer’s, who led the effort to gather comments from all 2012 candidates. “These three candidates emphasize that a strategy of curing Alzheimer’s disease can be a critical driver in reducing health care costs, with the proper regulatory environment and private and philanthropic partnerships and investment. We look forward to hearing from the other candidates, including President Obama, on how they would address Alzheimer’s.”

In the past month, USAgainstAlzheimer’s reached out to the campaigns of all 2012 presidential hopefuls, including President Obama, seeking a video response to how they would address the Alzheimer’s crisis. The following are excerpts from the videos received thus far:

Former Speaker Newt Gingrich has long made Alzheimer’s disease one of the centerpieces of his campaign, outlining a series of proposals in his new “21st Century Contract with America” that emphasize the need for greater brain science research, medical innovation and a more agile Federal Drug Administration. “Alzheimer’s affects millions of people, and it affects the families of millions of people because an Alzheimer’s caregiver is twice as likely to have a health problem as somebody who’s not a caregiver. Alzheimer’s is going to cost us between now and 2050, as much as 20 trillion dollars, and that’s why it’s very important that we take steps such as I’m proposing in my brain science initiative,” Gingrich said. To see Gingrich’s video, click here: http://bit.ly/snq9k7.

Ambassador Jon Huntsman aims to increase funding for research and bolster public-private partnerships to develop a cure for Alzheimer’s disease. “[Alzheimer's] carries a tremendous human toll, but also a financial toll, driving up health care costs by hundreds of billions of dollars a year. It is a disease with no treatment and no cure, but that doesn’t mean there is no hope. Experts believe a cure is possible by the end of this decade, but only with a sustained, targeted, and national commitment,” said Huntsman. “Now it is time for us to declare a War on Alzheimer’s, and rally the American people around the belief that this disease is beatable.” To see Huntsman’s video, click here: http://bit.ly/tQuvTf.

In her message, Rep. Michele Bachmann referenced the development of the polio vaccine and how this cure gives hope to those seeking a cure for Alzheimer’s. She said, “It was once predicted we would spend$1 billion a year on polio, maybe even more. Today, polio costs us virtually nothing, because Jonas Salk found a vaccine — a cure — and I’d like to see that same thing happen with Alzheimer’s. Because I believe a cure is always better — and cheaper — than more care.” To see Bachmann’s video, click here:http://bit.ly/v1WAHN.
Currently, 5.4 million Americans suffer from Alzheimer’s and the disease impacts 14.9 million caregivers nationwide. In the coming decades, the number of Americans suffering from Alzheimer’s will triple. Without a cure, over 10 million baby boomers will die from the disease.

Alzheimer’s is the sixth leading cause of death in the U.S. and remains the only disease in the top ten with no means of prevention, treatment or cure. It is a disease that destroys not only one’s memory and shortens one’s life, but disables one’s physical capacities as well. Despite the personal and financial toll Alzheimer’s inflicts, the National Institutes of Health invests only about $450 million per year toward Alzheimer’s research — less than $90 per person living with the disease.

USAgainstAlzheimer’s is a national advocacy campaign and advocacy network committed to stopping Alzheimer’s by 2020. An independent non-profit organization working in partnership with the Alzheimer’s community, USAgainstAlzheimer’s works to advance policies and elect candidates dedicated to stopping the disease by supporting research for a cure.

For more information about USAgainstAlzheimer’s, visit http://www.usagainstalzheimers.org/.

Image Courtesy of  Christopher Halloran / Shutterstock.com

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