Talk to someone at the University of Wisconsin-Madison who is working in Alzheimer’s disease research, clinical care, or outreach, and you’ll quickly notice that fighting the condition is a team effort with as much grit and dedication as any Badgers football season. Through a network of personnel, volunteers, research centers, institutions, and memory clinics, there are hundreds of individuals and dozens of resources striving to reverse the tide of Alzheimer’s disease. Just as defensive and offensive lines each have a specific role on the football field, every UW-Madison Alzheimer’s disease group has a part to play. For example, the Wisconsin Alzheimer’s Disease Research Center (ADRC) and the Wisconsin Alzheimer's Institute (WAI) work together to end Alzheimer’s disease from two different angles. The Wisconsin ADRC’s primary focus is generating new knowledge through research, and the WAI is well-known for bringing new knowledge to communities.
Research studies by ADRC and WAI have complementary goals for discovery and intervention, and they share common data elements, which allows researchers to pool data for studies—thereby achieving even greater impact. Wisconsin ADRC and WAI faculty and staff also collaborate on scientific areas to advance science into care and treatment, moving progress from benchside (research laboratories) to bedside (clinical settings) to curbside (communities in Wisconsin and beyond).
Talk to a caregiver or philanthropic donor who has heard about Alzheimer’s disease efforts at UW-Madison, though, and the granularity of institutional resources falls away. In its wake, it leaves an awareness that “the good people at the University are working on it.”
Rising Storm of Alzheimer's Disease Creates Urgent Need
The work can’t come fast enough. Alzheimer’s disease is the sixth leading cause of death in the United States, affects more than 5 million Americans, and results in a new diagnosis every 66 seconds. Current US costs will top $259 billion by the end of this year, and a 2014 study found that 42 percent of families with a member who has Alzheimer’s disease pay more than $20,000 per year for care. If present trends continue, it’s estimated that by 2050 one person will be diagnosed with Alzheimer’s disease every 33 seconds. Costs of care could top a staggering $1.1 trillion, threatening the financial solvency of Medicare.
Despite this, federal funding for Alzheimer’s disease research has lagged for decades, hovering around $500 million annually in comparison to approximately $5 billion for cancer research and $1.2 billion for heart disease research. While scientists and clinicians are grateful for a recent boost in spending on Alzheimer’s disease research, there’s grave concern that it won’t be enough to make a difference as quickly as society will need it.
Philanthropy can play a key part in closing the gap, and explaining UW-Madison’s team approach in sweeping terms is essential. “We needed a way to tell a united story about what the UW School of Medicine and Public Health is doing in the area of Alzheimer’s disease with the goals of engaging as many people as we can, building awareness of the disease, and helping raise philanthropic dollars for this great body of work. That ‘way’ is the UW Initiative to End Alzheimer’s, which was founded in 2016,” said Dori Suddarth, director of development for the initiative.
Creating a Framework for Giving
The UW Initiative to End Alzheimer’s provides a framework for donors to understand the breadth of the Badger approach. “Right here in Madison, Wisconsin, there is work being done to address all aspects of Alzheimer’s disease, and this is unique. We are not only conducting groundbreaking research to find treatments, preventive measures and hopefully a cure but also working with patients, families, and the community through innovative education, outreach, and programming, as well as doing community-based research to identify best practices in dementia care. It is program that takes the work from bench to bedside to curbside,” said Ms. Suddarth.
The fight is personal at UW-Madison. “The minute my father passed away from Alzheimer’s disease, I knew I was going to make this my life’s work. I have dedicated my entire professional life to finding a cure to this disease and I won’t stop until the job is done,” said Sanjay Asthana, MD, professor and head, Geriatrics and Gerontology, associate dean for gerontology, director of the ADRC, and Duncan G. and Lottie H. Ballantine Geriatric Professor.
These sentiments are shared by Ms. Suddarth, whose family has also been touched by the disease. “My grandfather had Alzheimer’s and my father-in-law is currently suffering from this disease so it is something I think about every single day in my personal life. But that is just my personal pride and gratitude. The pride that has come from being associated with this incredible group of people (faculty, researchers, volunteers, staff, etc.) has been an unexpected surprise for me,” she said. By coming in closer contact with UW School of Medicine and Public Health (SMPH) members working on Alzheimer’s disease, Ms. Suddarth sees daily the passion and determination of the team. It’s a story she relates to donors, and one that helps give hope in the face of challenge.
And the magnitude of the team effort required of SMPH members working on the disease is clear. “In order to serve those in Wisconsin who are suffering from Alzheimer’s disease, we all need to come together to share our knowledge and be generous with information surrounding this disease – that’s the only way we will effectively serve the citizens of the state,” said Jane Mahoney, MD, professor, Geriatrics and Gerontology and director of the WAI.
The team effort between ADRC and WAI members is continually magnified, as well, both through collaborations and because many faculty members hold appointments at both organizations. The groups complement and amplify one another, creating a synergy that is fully dedicated to ending Alzheimer's disease.
Working Toward a Brighter Future Together
“Alzheimer’s disease is about 50 years behind cancer,” said Ms. Suddarth. “There was a time when the same stigma was attached to cancer and people felt it was hopeless - a death sentence - but because there was an influx of financial support, treatments were found. We need more people to recognize the problem and get behind finding a solution.”
It's a sentiment shared by Alzheimer's advocate and movie star Seth Rogan, who took up the cause when he watched his mother-in-law become disabled by dementia before she turned 60. "Americans whisper the word 'Alzheimer's' because their government whispers the word 'Alzheimer's,'" Mr. Rogen told a Senate hearing in 2014. "It needs to be yelled and screamed to the point that it finally gets the attention and the funding it deserves and needs."
At UW-Madison, Badgers are doing what they do best: rolling up their sleeves and tackling the challenge head-on. “Our goal with the Initiative to End Alzheimer’s is to play a major role in forging a solution by focusing on our priorities: research, public health, models of care, health equity, and talent retention and recruitment,” said Ms. Suddarth.
- UW Initiative to End Alzheimer’s
- "Where's the War on Alzheimer's?," AARP Bulletin, January/February 2015
— by Robyn M. Perrin, PhD, July 27, 2017