About this Challenge:
It’s no secret that mental health tends to decline as we age (Alzheimer’s, dementia, etc). Some is natural cognitive decline; some is disease with severe cognitive impairment due to diseases associated almost entirely with aging.
By 2020 there will be 43 million Americans over 65 and 15 million over 85 (double the figures of 1980). Almost certainly, we are facing an unprecedented number of mentally impaired citizens.
Hope for cures is not a strategy. What should we be doing to prepare to meet the needs of tens of millions of mentally impaired older citizens?
Meet the Challenge Team
The Challenge Team Members are leaders in their fields and reflect multi-disciplinary, passionate and thoughtful perspectives for the Challenge they represent.
Challenge Team members participate in the discussion held by the Great Challenges community, and will be creating responses to questions submitted by the community on the discussion tab.
Dr. Brangman is a graduate of Syracuse University and earned her medical degree from SUNY Upstate Medical University in Syracuse, New York. She completed her internship, residency, and geriatric fellowship programs at Montefiore Medical Center in the Bronx, New York.
She is Professor of Medicine and Division Chief of Geriatric Medicine at SUNY Upstate Medical University. She is also Director of the Central New York Alzheimer’s Disease Assistance Center. Dr. Brangman is board certified in internal medicine and geriatric medicine.
Dr. Brangman has received many honors, including Best Doctors of Northeast Region and Hartford Geriatrics Leadership Scholars Award. Upstate Medical University recently established the Sharon A. Brangman, M.D. Endowed Professorship in Geriatric Medicine in honor of her leadership in geriatrics at Upstate and the Central New York region.
She serves on the board of The OASIS Institute based in St. Louis, and the Foundation for Health in Aging. She has been active in the American Geriatrics Society, serving on the Board of Directors for ten years, and recently completing terms as President and Chair of the Board.
Geriatric medicine encompasses so many more clinical issues than Alzheimer’s disease, but I spend a significant amount of clinical time helping patients and families manage this devastating disease. Perhaps with the exception of cancer, there is no other diagnosis that people fear and dread more. Alzheimer’s disease removes the memories that make us all unique and leads to the unwinding of an individual’s independence, personality and relationships that take a lifetime to develop.
I typically have two “patients” in my office; the official patient who is assigned to see me, and the caregiver who brought the patient in. Successful patient care means helping the caregivers as well.
Meryl Comer is an Emmy-award winning reporter and syndicated business talk show host with over 30 years of experience in broadcast journalism. She was one of the first women to host a nationally syndicated TV debate show that specialized in business news as it relates to public policy.
Comer was named President of the Geoffrey Beene Foundation Alzheimer’s Initiative in 2008. Winner of the 2005 Shriver Profiles in Dignity Award and the 2007 Proxmire Award, Ms. Comer has provided testimony before Congress on behalf of the Alzheimer’s Association and served on the 2008-09 Alzheimer’s Study Group, charged with presenting a National Strategic Plan to Congress. She is credited with the spirited Rock Stars of Science campaign to salute our researchers and attract the next generation to careers in science. For the last 16 years, she has cared for her physician/researcher husband with early onset Alzheimer’s. Ms. Comer is currently writing a book, Slow Dancing with a Stranger, to benefit Alzheimer’s research.
I am a former TV journalist, not a scientist, nor a neurologist or a gerontologist. Why do my personal observations warrant a place in this scientific conversation? Let’s just say I have put in almost two decades of “on the job training” and “real time testing” of the latest therapies designed to slow the progression of a disease that will ravage the baby boom generation. Alzheimer’s disease is a pending epidemic greater and deadlier than a flu pandemic. No one survives its onslaught.
Studies show that those who get the disease have the bio marker in them between 10 to 20 years before exhibiting any symptoms. We are ticking time bombs without even knowing it. How ironic that the generation that wouldn’t trust anyone over age 30 and still embraces youth is now succumbing to a scourge linked to age.
Jeffrey L. Cummings, M.D., Sc.D. is director of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, Nevada and Cleveland, Ohio -- a clinical care, translational research, and clinical trials enterprise specializing in care of patients with neurocognitive deficits and development of new therapies for neurodegenerative disorders. He also chairs the Neurological Institute of Cleveland Clinic.
Cummings’ research and leadership contributions in the field of Alzheimer’s disease have been widely recognized with prestigious awards from the American Geriatrics Society, the John Douglas French Alzheimer’s Research Foundation, the national Alzheimer’s Association, the American Association of Geriatric Psychiatry and others.
Cummings is expert in clinical trial design and analysis, global trial implementation, and trial outcome measures. He is the author of the Neuropsychiatric Inventory (NPI) which is the most commonly used tool for clinical trials characterizing behavioral disturbances in dementia syndromes. He has authored or edited over 30 books and published 600 peer-reviewed papers.
As a neurologist who cares for patients with Alzheimer’s disease and a clinical trialist who works to test drugs in clinical trials and find new solutions for Alzheimer’s, I am aware of the tremendous challenges patients and caregivers face. New solutions for involving patients in trials and advancing new therapies are urgently needed.
Guy Eakin is the Vice President of Scientific Affairs at the BrightFocus Foundation.
Eakin leads the foundations efforts to identify promising and innovative research to combat Alzheimer’s disease, macular degeneration, and glaucoma. Dr. Eakin works to ensure continued research progress in each of the over 100 active research projects throughout the world.
Prior to coming to BrightFocus Foundation, Eakin worked in medical research at Memorial Sloan Kettering Cancer Center in New York City, and at the University of Texas, M.D. Anderson Cancer Center in Houston, Texas. During his research career, he studied and developed new ways of visualizing complex microscopic events in living cells and animals.
Eakin holds a Ph.D. in Developmental Biology from Baylor College of Medicine, and a Bachelor of Science degree in Biology from Indiana University. In addition to his oversight of the scientific programs, Dr. Eakin is a spokesperson for the organization, having been featured in works presented by Prevention magazine, Oprah.com, the National Press Foundation, and others. He previously served on the board of directors of the Grants Managers Network, a 2000-member organization committed to best practices in grants management.
My leadership role at the BrightFocus Foundation has provided opportunities to hear the desperation of our public constituents mirrored by the very real concerns of the scientists whom we fund. Our public friends undergo heroic personal struggles in a vacuum of therapeutic advances against Alzheimer’s disease. Meanwhile, our scientists survive no less heroically in a paradoxical culture of shrinking research budgets in the face of increasing disease prevalence.
This lead me to commit my professional life to science advocacy, helping the world’s most promising scientists secure the resources necessary to meet this unique and growing 21st century challenge.
William H. Thies, Ph.D., is Chief Medical and Scientific Officer for the Alzheimer’s Association in Chicago. Thies oversees the world’s largest private, nonprofit Alzheimer’s disease research grants program. Under his direction, the annual grants budget has more than doubled, and the program has designated special focus areas targeting the relationship between cardiovascular risk factors and Alzheimer’s, caregiving and care systems, and research involving diverse populations.
Under Thies’ stewardship, the annual Alzheimer’s Association International Conference has grown into the world’s leading forum on dementia research, attracting 4,000 scientists to six days of state-of-the-art presentations on virtually every topic of significance in the field.
Thies played a key role in establishing the Association’s Research Roundtable, a consortium of scientists from industry, academia and government who meet regularly to explore topics of mutual interest in drug discovery and eliminate barriers to progress.
In previous work at the American Heart Association, Thies formed a new stroke division that became the American Stroke Association. Prior to joining AHA, he held faculty positions at Indiana University in Bloomington and the University of Pittsburgh. Thies earned a B.A. in biology from Lake Forest College and a Ph.D. in pharmacology from the University of Pittsburgh School of Medicine.
My position with the Alzheimer’s Association provides me the privilege of interacting with a great variety of people who are deeply involved in the cause of ending Alzheimer’s disease.
I regularly meet with academic and industry scientists, and I see their passion for discovery and for conquering this awful disease. I have many opportunities to engage with people with Alzheimer’s and their families. I feel their desperation and weariness; and also their bravery, perseverance and hope.
These connections, plus my involvement in public policy, show me that Alzheimer’s is a problem that affects everyone in the community – and which cries out for community-driven solutions.
George Vradenburg is the Chairman and Co-Founder of the USAgainstAlzheimer’s Network and USAgainstAlzheimer’s, a 501c(3)/c(4) education and advocacy network and campaign committed to educating and mobilizing America to stop Alzheimer’s by 2020. Through USAgainstAlzheimer’s, George launched the SPRINT Agenda, a public/private effort to accelerate the therapeutic pipeline from basic research to Alzheimer’s therapies in the market. George has brought powerful voices to the fight against Alzheimer’s as co-convener of Leaders Engaged on Alzheimer’s Disease (LEAD), a network of major Alzheimer’s-serving organizations. He served on the National Alzheimer’s Advisory Council to advise the National Alzheimer’s Strategic Plan and he helped conceive and support the Alzheimer’s Study Group and the Alzheimer’s Disease International’s World Alzheimer’s Reports. Through the Vradenburg Foundation, George and his wife Trish launched and co-chaired the National Alzheimer’s Gala for eight years, raising over $10 million for the Alzheimer’s Association.
George is active in the civic and philanthropic community, as Chairman of the Board of The Phillips Collection and the Geoffrey Beene Foundation’s Alzheimer's Initiative. He is also the co-founder and Vice Chairman of the Chesapeake Crescent Initiative and serves on the board of the University of the District of Columbia. Vradenburg is also a member of the Council on Foreign Relations and the Economic Club.
Before his retirement, George served in senior executive positions at AOL/Time Warner, CBS and Fox.
Alzheimer’s robbed my mother-in-law of her zest for life and her dignity. Once I saw how this disease ravages not just individuals, but entire families, I made a commitment to stop Alzheimer’s. This is not just a personal issue; Alzheimer’s is a national health and fiscal crisis as well. After a career in the media, entertainment, and Internet worlds, I founded USAgainstAlzheimer’s to turn my global advocacy experience in championing the growth of the Internet, freedom of the press and policy issues to create a movement to reject the “business as usual” attitude toward Alzheimer’s and aggressively battle this disease through innovation, public-private partnerships and policy change.
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Question 1What are the top 10 contributing factors – including medical and non-medical -- that make the coming “dementia tsunami” a complex and difficult problem, and how do those factors interact with each other?
That's a great question. The dementia tsunami as you so aptly bill it is a threat to our national and global health, economic prosperity, and security. Let's take a deeper look at the factors:
- Our nation, the populations of other developed nations and, increasingly, the populations of developing nations, are aging, meaning that Alzheimer's - as a disease related to aging - is only going to become ever more prevalent in the coming decades unless we make significant progress in the discovery and development of a means of prevention and treatment. Aging expert and USAgainstAlzheimer's board member Ken Dychtwald tells this story like no one else can. Essentially, thanks to public health innovations and advances in medicine, humanity has helped conquer many of the diseases and other causes of death that for thousands of years kept life expectancy in the 35-45 age range, progress that enabled us to add more than 30 years to the average life expectancy of Americans during the past century. This growth in healthy life spans generated unprecedented economic prosperity, but the aging of populations generally -- coupled with the aging of the baby boom generation specifically -- means our nation and other developed and developing nations will experience tremendous growth in the number of persons age 65 and older, adding to the financial costs of caring for Americans and putting a drag on economic growth. We must make sure our health and social service systems are prepared to ride what Ken Dychtwald has for decades predicted as a historically-unprecedented "age wave".
- What is painfully obvious, yet not always adequately understood, is that no one survives Alzheimer's. Of course other diseases claim lives but many of them, particularly those that are most common - including many forms of cancer, diabetes, heart disease, HIV/AIDS, and more - can be prevented and/or treated. That is not true for Alzheimer's and related dementias. Alzheimer's is currently the sixth leading cause of death in the United States and the only leading cause of death than cannot be prevented or treated with a disease-modifying therapy. Right now, here in the U.S. alone, more than 5 million Americans are suffering this sentence, and about 36 million people globally - more than the current population of people with HIV/AIDS - are dying with dementia. Most of these people are forced by the disease to pull out of the workforce and many will be dependent completely or entirely on family caregivers, which gets us to the next factor:
- Fifteen million family caregivers are taxed with providing uncompensated care to their loved ones. See any family caregiver, particularly one who has provided care for years, and I bet you they will look as though they've gone through hell. They will be tired and worn down; they will be sick with ailments that have gone undiagnosed or unaddressed because they lack the time and/or money to seek medical care; they will be suffering from loneliness and isolation, possibly even depression, brought about by their own loss of a professional and personal life and by experiencing the deterioration of their loved one. Even if still working outside the home, chances are they will have bypassed promotions, have reduced the hours they work, and have been far less productive given these stressors. The reality of tens of millions of people - both patients and their caregivers - forced out of the workforce and out of being productive and contributing members of society - is an economic disaster, with unpaid caregivers contributing more than $210 billion this year in uncompensated care, according to the most recent iteration of Facts & Figures by the Alzheimer's Association.
- Shifting gears slightly, another factor is the lack of a highly focused and goal-oriented Alzheimer's research agenda. When America has strived to solve complex challenges in the past, we have used highly targeted and outcomes-oriented initiatives, like the moonshot in the 1960's, HIV/AIDS treatment efforts in the 1990's and the sequencing of the human genome earlier in this century, to do so. We need a similar goal-oriented and milestone-driven approach to developing means to treat and prevent Alzheimer's and dementia and prevent this tsunami from becoming the national disaster it most assuredly will become without a comprehensive and aggressive response.
- Inadequate levels of public research funding for Alzheimer's and dementia imposes another challenge in addressing the tsunami. We all know well the fiscal and economic challenges our nation faces. Given these budgetary realities, tens of billions of dollars in increased NIH and other funding is highly unlikely for the foreseeable future. But we also know that Alzheimer's is already costing our nation hundreds of billions of dollars annually while our federal research commitment to the disease is less than $500 million. Congress and the NIH must step up and recognize that only by investing appropriate sums of money into targeted Alzheimer's research will we be able to save taxpayers trillions of dollars in the decades ahead, as well as to achieve our national goal of preventing and treating Alzheimer's by 2025. We also must provide the policy environment that will incent the biopharmaceutical industry to retain its commitment to Alzheimer's research.
- Related to the research challenge are the scientific challenges associated with the disease as well as the complexity, length, and cost associated with the drug development process. It now takes fifteen years and more than $1 billion to develop one therapy. That is too long and too expensive - simply unacceptable. While scientific and medical breakthroughs funded by increased public and private investments are absolutely essential, we must also change the current 'business as usual' attitude and work to compress the drug development timeline significantly using a variety of innovations and tools in order to translate scientific breakthroughs into life-enhancing and extending medicines more quickly and efficiently. Qualified biomarkers, data standards and data sharing, and robust patient registries are all examples of tools that would have such an impact.
- The extraordinary length of Alzheimer's disease compared to other diseases is another factor. The average patient lives with the disease for a number of years before being diagnosed and then for an average of 8 years after diagnosis, with some living 20 years or longer. Meryl Comer can speak more to the toll it takes on caregivers. Many of us have experienced loved ones battling cancer or other diseases and know how painful those last few months can be. But Alzheimer's imposes a very long and extremely exhausting experience for the victim, one that exacts a tremendous toll on caregivers and other loved ones.
- Another factor to consider is that our health system is ill-prepared to care for tens of millions of people with Alzheimer's victims over the coming decades. Patients with Alzheimer's and other dementias cost Medicare about 3 times more money than patients without Alzheimer's, nine times for Medicaid. Alzheimer's, particularly as the disease progresses, makes it nearly impossible for patients to self-manage their other conditions, for example, a diabetic forgetting to manage his/her blood glucose levels. And, in the latter stages of the disease, Medicaid-supported institutionalization is common because of a victim's total dependency on others for care. This means comorbidities go unaddressed, causing the patient to become sicker and to require more intensive and expensive interventions. Our health care system must become more dementia-capable and dementia-sensitive with the goal of increasing the quality of care and at the same time reducing costs of care and care giver burden.
- Related to this point is the fact that our nation is sorely lacking an adequate number of appropriately trained dementia caregivers ranging from skilled nursing professionals through geriatricians and related specialties. We absolutely must recruit more competent individuals into these careers and also help improve the competency and knowledge of those already in the field. The National Plan has set some important goals and strategies in this area and they must be pursued aggressively. Most care facilities are simply ill-prepared to provide quality dementia care. Compounding the problem further is that our healthcare financing system is also ill-equipped to compensate for both care planning services, for the costs of long-term nursing facility care and for the living wage required to assure a motivated and capable care workforce.
- Finally, another factor we must address is the stigma associated with Alzheimer's and dementia. Until all of us are as comfortable assessing our brain health as we are our body health, patients and caregivers will remain closeted for far too long, delaying entry into the care and support systems as well as gaining access to the innovations coming from the research enterprise. Given the likelihood that effective interventions will need to be administered far earlier on in the disease process - likely when symptoms are very mild or even non-existent - it is critical for patients and caregivers to overcome their fear, and the stigma and isolation, now associated with the disease. We must bring Alzheimer's out of the shadows, first and foremost, so patients receive the care they need and so our elected officials recognize the scope of the crisis and summon the political will to act accordingly.
Select a Question to View The Challenge Team's Responses
The following questions were submitted by the TEDMED Community and selected for further discussion. The Team Members have weighed in on each, select below to see their responses:
Members of the Great Challenge Team, Preparing for the Dementia Tsunami gathered on Google + Hangout to discuss the topic in a virtual roundtable event.
View the Live Event recast and then continue the discussion by leaving your thoughts below!
|MODERATOR: Judy Bachrach is a contributing editor at Vanity Fair magazine, a weekly blogger at worldaffairsjournal.org - view it here. She is also currently writing a book on near-death experiences for National Geographic Book. Learn more about Judy here and follow her on Twitter @judybachrach.|
Sharon A. Brangman, MD, Meryl Comer, Jeffrey L. Cummings, MD, ScD, Guy Eakin, PhD, William Thies, PhD, George VradenburgMeet the Team