Fifth Annual Dementia Congress Educates 1,000 Health Professionals
More than 1,000 physicians, advanced practice nurses, and physician assistants convened in Orlando Nov. 3–5 at the Fifth Annual Dementia Congress, a continuing medical education conference supported through an unrestricted educational grant from Eisai Inc. and Pfizer Inc., and jointly sponsored by the Alzheimer’s Association, the UCLA Center on Aging, and the Academy for Healthcare Education. Over the three-day meeting, a slate of distinguished faculty with international distinction in clinical research and practice presented current concepts and opinion in diagnosis, treatment, and care.
The overall goal of the Dementia congress is to encourage a positive clinical attitude toward active medical management of dementia over the course of the illness from diagnosis through the end of life. The event features keynote addresses, general interest sessions, and three breakout tracks geared to members of the primary care team, neurologists and psychiatrists. Attendees are free to move from one track to another to take advantage of specific presentations that serve their educational goals. All presentations and meals are free of charge to attendees.
Each annual program kicks off with a “hot topics” panel moderated by congress chair David S. Geldmacher, M.D., in which track leaders and other selected faculty debate high-interest emerging issues. Topics tackled by this year’s panel included the potential for future therapies to be both symptomatic and disease modifying; possible biological mechanisms underlying the impact of cardiovascular disease on cognition; and the applicability of various positron emission tomography (PET) imaging techniques to presymptomatic diagnosis.
Panelists addressed “hot topics” in the order selected by attendees via a state-of-the-art, real-time interactive keypad response system. Featured in all sessions, the keypads provide a means for attendees to answer questions, offer opinions, and evaluate faculty and educational content immediately following presentations. With the exception of faculty and content ratings, all feedback is instantly quantified and displayed on the presentation projection screens. Audience participation is also encouraged through frequent question-and-answer opportunities.
Key concepts emerging from congress sessions included the following:
•With regard to dementia, a “passive medicine” model prevails in which practitioners wait for a patient to raise concerns about cognitive function. This approach leaves an estimated 60 percent of individuals with dementia undiagnosed, potentially depriving them and their families of interventions, care and services that can have a significant impact on quality of life. Undiagnosed dementia can also undermine safety and optimal management of co-existing conditions.
•Control of vascular risk factors and regular exercise are emerging as the two most effective dementia risk-reduction strategies currently available. However, girth and inactivity continue to increase in the United States, and many individuals may be unable or unwilling to make the necessary commitment to long-term lifestyle changes.
•Evidence continues to mount that in many cases, dementia tends to be symptomatically and neuropathologically heterogeneous.
•Although behavioral manifestations remain among the most troubling symptoms of dementia for practitioners, diagnosed individuals and families, nonpharmacological strategies and medications can be helpful when carefully tailored to the individual and the situation.
The lively atmosphere of the hot topics session resurfaced in “case study challenges,” where track faculty presented and debated individual patient vignettes, illustrated with video clips. At pivotal decision points, attendees also offered input via their keypads. The case studies provided some clinical surprises as well as solid grounding in core concepts.
The Fifth Annual Dementia Congress offered up to 14.25 hours of American Medical Association category I continuing medical education (CME) credit through the Academy for Healthcare Education. For information about future events, please visit the congress Web site at www.dementiacongress.com.
Research Roundtable Explores Health Economics and the Real-World Value of Therapy
An ongoing debate in dementia treatment centers on whether a statistically significant impact on cognitive test scores actually translates into a “clinically meaningful benefit” that may be noticeable and satisfying to diagnosed individuals, family caregivers or health professionals. Current FDA criteria for dementia drug approval attempt to address this issue by requiring investigational agents to show a significant impact on “global function” as well as on cognition. This issue of “real-world” benefit is further complicated by growing concern about the ever-increasing cost of medical care in an aging world, where health expenditures continue to outpace inflation by a significant margin.
At a Nov. 7–8 meeting in Washington, D.C., members and invited guests of the Alzheimer’s Association Research Roundtable explored current implications of this debate and how the “real-world value proposition” might evolve and affect future drug discovery and development of next-generation treatments.
Research Roundtable chair Dale Schenk, Ph.D., senior vice president and chief scientific officer at Elan Corporation plc, set the tone for the meeting by observing, “Our goal is not to get drugs approved for Alzheimer’s disease; our goal is to change the lives of patients and caregivers.”
First presenter C. Daniel Mullins, Ph.D., Professor and Chair of the Pharmaceutical Health Services Research Department at the University of Maryland School of Pharmacy, helped frame the terms of the discussion by pointing out that health economics is really about decision-making in the face of scarce resources and imperfect, often conflicting, evidence. The task is to develop meaningful models of real-world value that adequately reflect the special considerations involved in “cognitive health” economics and care.
Over the next two days, a series of distinguished presenters explored the nature of those special considerations and what some potentially useful value models might look like from varying perspectives. There was general agreement that quality-adjusted life years (QALYs), one of the most widely used current models for gauging treatment value, are not an appropriate yardstick for dementia. In addition to certain limitations inherent in the concept, QALYs are biased against conditions that affect mental function and, with their emphasis on life expectancy, also biased against older adults.
There was also a consensus that ideal dementia-relevant value models should somehow account for the subjective experience of diagnosed individuals and caregivers. How do patients, families, and caregivers define value and how do we measure it? Yet the prospect of factoring in input from individuals with dementia, whose capacity to report their internal state declines over the course of the disease, poses special challenges. And few models consider the impact on family caregivers, partly because third-party payers tend not to care about this dimension. From a payer’s perspective, “value” often equates with “low price.” Howard Fillit, M.D., executive director of the Institute for the Study of Aging in New York City, suggested that it would be easier to gain acknowledgement of the impact on caregivers by emphasizing that in addition to affecting “soft” informal costs, improved caregiver well-being can reduce direct medical costs such as hospitalization of the diagnosed individual, which accounts for a large percentage of the excess cost associated with dementia.
Several speakers cautioned that even from a strictly financial perspective, attention must be paid not only to cost-effectiveness, but to overall health system budget impact. Even a treatment that met cost effectiveness benchmarks on a case-by-case basis could bankrupt a payer who had to make it available to every eligible beneficiary covered by its plan. A related issue is that if future diagnostic strategies or treatments should become tied to validated biomarkers, the cost of monitoring biomarkers needs to be factored into treatment costs.
Also complicating the effort to capture the subjective dimension of value is the tendency of caregivers and diagnosed individuals not to agree about life quality. Rebecca E. Ready, Ph.D., assistant professor of psychology at the University of Massachusetts at Amherst, said that diagnosed individuals with almost any disease tend to report better quality of life than do their caregivers. She also observed that part of this discordance is due simply to the “Rashomon effect,” a universal human tendency for individuals to report contradictory but equally plausible accounts of the same event or experience. One of the few issues on which patients and caregivers consistently agree is that neuropsychiatric symptoms such as depression, irritability and apathy have the greatest negative impact on quality of life.
Sube Banerjee, M.D., professor of mental health and aging at King’s College, London, reminded attendees that there is no straightforward correlation between dementia severity and quality of life. There are individuals with advanced dementia who report satisfying quality of life, and there are those with very mild disease who report poor quality. As one strategy to help resolve discordance between patient and caregiver perceptions, he recommended asking caregivers not, “What kind of quality of life do you think your loved one has?” but rather, “How do you imagine the person with dementia feels about his or her quality of life?”
The meeting concluded with a panel on “Patient and Family Perspectives on Burden of Disease and Benefits of Intervention.” Moderated by Stephen McConnell, Ph.D., Alzheimer’s Association senior vice president for public policy, the panel included diagnosed individuals and current and former caregivers who contributed a highly personal perspective on the theoretical issues examined by the other speakers.
The Alzheimer’s Association Research Roundtable is a consortium of senior scientists from industry, academia, and government who convene regularly to explore topics of mutual interest in drug discovery and development as well as common barriers to progress. The recent meeting on “Health Economics and the Real-World Value of Therapy” was one of the Roundtable’s biannual Spring and Fall “topic meetings,” at which members and invited guests conduct an in-depth exploration of an issue or concept identified by members as particularly relevant. Topic meetings are structured to include presentations by scheduled speakers, panel discussions, and question-and-answer opportunities.
One or more papers based on each topic meeting appear in Alzheimer’s & Dementia. Watch for papers from the Health and Economics and Real-World Value event in a future issue.
The Research Roundtable welcomes new members. If you would like more information about joining, please contact Jay Thompson, Alzheimer’s Association associate director, corporate initiatives, at jay.thompson@alz.org. If you have any questions about the scientific mission of the Roundtable, please contact Maria Carrillo, Alzheimer’s Association director, medical and scientific relations, at maria.carrillo@alz.org.
FULL TEXT