Alzheimer's Experts Provide New Treatment, Advocacy Plan

Deborah Brauser

September 07, 2012

September 7, 2012 — A group of leading researchers, advocates, and clinicians in the field of Alzheimer's disease (AD) have released a new consensus document containing a list of prioritized goals as well as treatment and policy recommendations for the disorder.

This "strategic roadmap," which will be published in the September issue of Alzheimer's and Dementia, came out of a recent summit meeting stemming from the Marian S. Ware Alzheimer's Program at the University of Pennsylvania (Penn).

Recommendations include linking the latest scientific findings on AD with clinical care, establishing an international registry, and using biomarkers for earlier identification of the disorder.

"This plan addresses the needs of a truly responsive healthcare system: to integrate healthcare and social services as well as research and educational programs that support people with Alzheimer's, family members, and other caregivers along an individualized and changing illness trajectory," lead author Mary Naylor, PhD, RN, professor of gerontology and director of the NewCourtland Center for Transitions and Health at the Penn School of Nursing in Philadelphia, said in a release.

"Alzheimer's is an enormous and complex disease, and we believe that creative thinking, repurposing of existing funds, vigilance in reducing waste, and a constant focus on cost effectiveness will help make these recommendations a much-needed reality," added senior author John Trojanowski, MD, PhD, director of the AD Core Center and professor of pathology and laboratory medicine at Penn, in the same release.

The authors note that their hope is that if parts of the new plan can be implemented globally, then preventive treatments for AD could be developed within the next decade.

In an official statement released today, the Alzheimer's Association said that in light of the recent release of other plans addressing AD, it is important for experts to come together to garner consensus about what should be evaluated and implemented.

"This preliminary set of recommendations should be considered, along with other such efforts in the Alzheimer's field," said the organization, noting that they add to a growing national dialogue about the disorder.

Goals Identified

According to the plan's authors, 5.4 million people now have AD, and more than 15 million Americans are AD caretakers.

The Ware Invitational Summit was convened in June and included experts from academia, advocacy groups, clinicians, and nonprofit groups, including the Campaign to Prevent AD by 2020. The attendees had previously been divided into 4 workgroups (Biomarkers, Clinical Care and Health Services Research, Drug Development, and Health Economics/Policy/Ethics), and each group came to the meeting with a preliminary list of specific recommendations that were discussed and modified.

The authors write that the goals identified by the overall group "mirror those reflected in the United States National Plan to address Alzheimer's Disease (USNPAAD)," which was released by the US Department of Health and Human Services in May 2012.

Key recommendations that came out of the meeting, and which are listed in the new consensus document, include the following:

  • Decrease the time from research to clinical practice by revising the regulatory process, increasing grant support, and incentivizing the development of medications for AD;

  • Establish a population-based registry of elderly adults both with and without dementia;

  • Develop a system that incorporates genetic, biologic, cognitive, and environmental markers; and develop new biomarkers; and

  • Propose legislation requiring that information gained through biomarker studies not be used in insurance or employment decisions.

"Our plan aims to provide good quality care for affected patients and families, advance our understanding of the pathophysiology and natural history of AD and other dementias, develop effective treatments to slow or prevent these diseases, and translate scientific advances successfully into policy and practice," write the authors.

"The diverse perspectives collected in this report provide constructive, ethical, cost-effective guidance for policymakers," coauthor Jason Karlawish, MD, associate director of the Penn Memory Center, said in the release. "The recommendations serve as a clear roadmap to bring caregivers, researchers, clinicians, and advocacy groups together and provide them much-needed support now and in the future."

Timely Report

In an accompanying editorial, Ara S. Khachaturian, PhD, executive editor of Alzheimer's and Dementia, and colleagues write that this new plan is "quite timely" with the recent releases of the USNPAAD, the National Institutes of Health Alzheimer's Research Summit report, and the Alzheimer's Association's Workgroup on the National Alzheimer's Project Act (NAPA) Scientific Agenda for a National Initiative on AD.

"Although the ultimate objective for these efforts is to advocate for increased government research funding and support for services, another important goal is to identify achievable public policy opportunities to modify existing programs and regulations without significant impact to department budgets," they write.

The editorialists also note that significant regulatory changes are needed to reduce disincentives for conducting prevention trials in order to spur drug development. "Perhaps the most identifiable hurdle is archaic patent laws, particularly in the US," they write.

"The bottom line is a clear need for thoughtful assessment of these logistical and economic issues...and hopefully some solutions that are balanced and fair to all stakeholders."

The Penn AD program is supported by the Marian S. Ware 2006 CWG Charitable Lead Annuity Trust.

Alzheimer's Dement. 2012;8:445-452, 379-380.