Alzheimer's Association Update

Article Outline

• International Conference on Alzheimer's Disease Presents Latest Research Findings and a Window into Future Challenges
  • Disease Mechanisms and Therapeutic Strategies
  • Biomarkers
  • Risk Factors and Prevention
  • Communication Style and Quality of Life
• Alzheimer's Disease Advocates Storm Capitol Hill
• American Express Cardholders: Vote for “Early Detection Matters”

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International Conference on Alzheimer's Disease Presents Latest Research Findings and a Window into Future Challenges 

Does one protein mechanism underlie the development of plaques and tangles? Which risk factors most accurately predict the development of dementia? How does the communication style of caregivers affect the quality of life of individuals with Alzheimer's disease (AD)? The Alzheimer's Association 2008 International Confe rence on Alzheimer's Disease (ICAD), held July 26–31 in Chicago, sought to answer these and other questions in diverse areas ranging from drug trials to genetics, neuroimaging, diagnosis, and social and behavioral issues in AD and other forms of dementia.

Historically the world's largest gathering of AD and dementia researchers, ICAD 2008 broke previous attendance records, drawing more than 5,400 attendees to 2,000-plus plenary, symposium, oral, and poster presentations. The conference attracted media attention both in the United States and abroad, with coverage by outlets including ABC, the BBC, CBS, CNN, NBC, the Associated Press, Reuters, The Wall Street Journal, and USA Today.

Opening the conference, Alzheimer's Association President and CEO Harry Johns thanked the attendees for the work they do every day to unlock the mysteries of dementia and shared some of the Association's strategic goals. These include “raising Alzheimer's from a disease to a cause that is embraced worldwide,” increasing financial support to researchers, and enhancing advocacy efforts to heighten awareness of the epidemic of AD. The disease and other dementias cost the United States more than $148 billion annually in Medicaid and Medicare services and in indirect costs to businesses that employ AD and dementia caregivers. According to one study, providing care for the estimated 29.3 million people worldwide with AD cost $315 billion in 2005 [Wimo A et al. Alzheimer's & Dementia 2007;3:381–91].

To accelerate the pace of research and the sharing of research advances, Johns announced that the usually biannual ICAD will be held annually. The 2009 meeting will take place July 11–16 in Vienna, Austria.

Disease Mechanisms and Therapeutic Strategies 

Researchers' and clinicians' keen interest in the development of drugs that will slow or stop the progression of AD was especially evident on the second day of the event, when a symposium on disease-modifying drugs drew a full house. The symposium featured six speakers who reflected the global focus on disease modification. The speakers and their topics were Bruno Vellas, MD, PhD, Purpan-Casselardit Hospital, Toulouse, France (Recommendations and Outcomes of Disease-Modifying Drugs); Eric Siemers, MD, Ely Lilly and Company, Indianapolis, Indiana (Disease Modification: Will We Know It When We See It?); Yasuo Ihara, MD, University of Tokyo, Japan (Why a Beta-Amyloid Vaccine?); Colin Masters, MD, PhD, Mental Health Research Institute, University of Melbourne, Parkville, Australia (Rational Therapeutic Strategies for Modifying AD: Beta-Amyloid Oligomers as Validated Targets); Roger Nitsch, MD, University of Zurich, Switzerland (Beta-Amyloid Immunotherapy in AD); and Bengt Winblad, MD, PhD, Karolinska Institutet, Stockholm, Sweden (Safety, Tolerability, and Immunogenicity of the Beta-Amyloid Immunotherapeutic Vaccine CAD106 in a First-in-Man Study in AD Patients).

ICAD 2008 gave attendees insight into the broad range of drugs in clinical trials. They incorporate an array of approaches to impact biologic processes associated with AD. “The overarching message is how robust the pipeline is,” said speaker Sam Gandy, MD, PhD, Mount Sinai School of Medicine, New York, New York. “Research is moving on all fronts and in unexpected directions.”

Paul Aisen, MD, University of California, San Diego, discussed the significant challenges facing those who conduct clinical trials. Among the challenges is the slow decline of placebo groups in clinical trials. For a drug to show that it stops or slows the progression of AD, the group that receives a placebo must fare worse. This requires longer trials lasting at least 18 months, because that is how long the placebo group needs to show a decline. Phase III clinical trials, which can cost $200–$300 million, still carry a high risk of failure because of the potential of larger sample sizes and longer trial durations to produce results different from smaller, shorter Phase II trials. Strategies to use in Phase II trials to decrease the risk of Phase III trials include aiming for “hints of clinical efficacy” and showing proof of the drug's mechanism of action through biomarker studies.

The physical changes to the brain in AD begin years before clinical symptoms such as memory loss develop. Disease-modifying drugs will likely be most effective before individuals develop clinical symptoms. A significant task before the research community is showing that impacting putative biomarkers of AD, such as the level of beta-amyloid in cerebrospinal fluid (CSF) and patterns of brain loss seen on imaging tests, results in cognitive benefit in the clinical setting. Doing so could elevate biomarkers to the status of surrogates for AD in the eyes of regulatory agencies that establish the requirements for clinical trials. This would enable researchers to set biomarker changes as evidence of a clinical trial's success.

“There is a movement to identify the disease earlier and earlier, and we need presymptomatic biomarkers to do this,” said speaker Ronald Petersen, MD, Mayo Clinic, Rochester, Minnesota. “A consistent theme has emerged of early detection for early intervention.”

Biomarkers 

Biomarkers have been an area of intense focus by researchers. Identifying biomarkers could lead to the development of simple tests such as blood tests that would be easy to use in the clinical setting and more readily accepted by the public than more complicated tests. Neuroimaging, which is able to detect very small changes in the structure of the brain, can be used to show both the degree of brain loss at any given time as well as the rate of loss of brain volume over time. Some presenters believe rate of brain loss might be more important than brain volume alone in the early detection of AD and other dementias.

Risk Factors and Prevention 

Beginning in the mid-1990s, large epidemiologic studies were undertaken to identify factors that contribute to brain health as well as to cognitive decline. These studies had consistent findings, showing that factors such as physical and mental inactivity were associated with higher risk of cognitive decline. However, these studies were conducted with individuals in late life and lasted for only a few years. More recent studies provide data from individuals beginning at mid-life and ending in late life.

Communication Style and Quality of Life 

The quality of life of individuals with AD and other dementias is affected by numerous factors. Some factors are well-known, such as the importance of the individual continuing to engage in enjoyable activities and creating a safe physical environment for the individual. Less well-known is the effect of caregiver communication style on quality of life. However, researchers have discovered that the impact is significant.

For more research news from ICAD 2008, visit http://www.alz.org/media_12490.asp. CD-ROMs of ICAD presentations are available at http://www.alz.org/ICAD.

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Alzheimer's Disease Advocates Storm Capitol Hill 

The 20th Annual Alzheimer's Association Public Policy Forum took place May 12–14 in Washington, DC. The forum was chaired by Association board member and former Medical and Scientific Advisory Council Chair Steven DeKosky, MD, then on faculty at the University of Pittsburgh and now dean of the University of Virginia School of Medicine. The chief objectives of the meeting were to highlight the urgent need to increase federal research funding for AD and to raise awareness about the importance of ending the 2-year Medicare disability waiting period for persons with AD younger than 65.

Individuals with AD, AD caregivers, Association staff members, and volunteers attended more than a dozen workshops and plenary sessions to hone their advocacy skills. Presentations included a research update featuring Dr DeKosky and Mary Woolley, President of Research!America, the nation's largest not-for-profit public education and advocacy alliance working to make federal funding for research a higher national priority. Dr DeKosky discussed the current and future direction of AD research, highlighting the ongoing search for biomarkers, advances in research that are improving diagnosis of AD, and medications being tested in clinical trials. Woolley gave participants helpful tips for how they can become stronger advocates for research funding and shared “best practices” from other effective advocacy campaigns that can be replicated by the AD community.

The Public Policy Forum ended when more than 600 Alzheimer's disease advocates stormed Capitol Hill, participating in more than 300 meetings with their elected officials to ask for a $125 million increase in AD research funding for the National Institutes of Health (NIH) and an end to the 2-year Medicare waiting period. Advocates also delivered personalized letters from 6,000 individuals who could not attend the forum but wanted to make their voices heard.

In addition to visiting with their members of Congress, advocates packed a Senate Aging Committee hearing featuring former Supreme Court Justice Sandra Day O'Connor, former House Speaker Newt Gingrich, former Association Early Stage Advisory Group member Chuck Jackson, AD caregiver Suzanne Carbone, and AD researcher Rudolph Tanzi, PhD, Harvard University, as witnesses. The testimony from Jackson and Carbone underscored the urgency of addressing the AD crisis. Dr Tanzi's update on the latest advances in science outlined how much has been accomplished in AD research and how much more needs to be done to stem the tide of the 10 million baby boomers who stand poised to develop AD in the absence of disease-modifying treatments. Many of the 11 senators in attendance told personal stories about how their families had been affected by AD. Several remarked that they had never seen so many people at a Congressional hearing.

The standing room only hearing was covered by media including ABC, CBS, C-SPAN, NPR, Reuters, and the Associated Press. The coverage leading up to the hearing drew Good Morning America, USA Today, and The Washington Post, which featured a front page story on Jackson.

The impact of the advocacy efforts combined with the press attention from the Senate hearing was felt in late June when the Senate and House Appropriations Committees approved legislation that would increase research funding for the NIH by approximately 4%. This would increase funding for AD research to approximately $662 million and keep pace with medical research inflation for the first time in 4 years.

Unfortunately, the bill is not expected to pass this year but will act as a placeholder and help drive discussions in early 2009 when Congress will likely bring up the spending measure for a final vote. On the Medicare front, advocates secured 56 additional cosponsors for the Ending the Medicare Disability Waiting Period Act (S 2102/HR 154).

To see photos from this year's forum and a Webcast of the hearing, visit http://www.alz.org/publicpolicyforum/08/overview.asp. The 2009 Public Policy Forum will be held March 23–25, 2009, in Washington.

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American Express Cardholders: Vote for “Early Detection Matters” 

As the September issue of Alzheimer's & Dementia: The Journal of the Alzheimer's Association went to press, “Alzheimer's Disease: Early Detection Matters” was a leading contender for the American Express Members Project. The top five projects will receive funding totalling $2.5 million. The Alzheimer's Association asks readers who are American Express cardholders to vote for this project. Voting is open until October 13 at membersproject.com.

“Early Detection Matters” (project OGSSPK), if funded, will create and implement an education program to show the importance of seeking an early diagnosis of Alzheimer's. Of the approximately 5.2 million Americans with Alzheimer's, only about half have been diagnosed. Early diagnosis gives individuals time to plan for their futures and seek treatment options, factors that can improve quality of life.