By Becca Verda, the Alzheimer’s Association Washington State Chapter
Alzheimer’s research has emerged as a new star in the scientific field. The Alzheimer’s Association International Conference (AAIC) was held in Washington D.C. last month and the world began to buzz with excitement for Alzheimer’s research.
Some of the most popular studies were those that explored lifestyle changes, which is no surprise, as we’ve heard promises (but no guarantees) of Mediterranean diets, chocolate and red wine preventing Alzheimer’s in the past. But now we have promising links backed by research between lifestyle and Alzheimer’s disease. Three studies released at AAIC found moderate to high intensity exercise may not only slow symptoms of individuals living with dementia, but could lead to improved cognitive function. And better yet, research says we need our sleep after this exercise to stop the hallmark plaques and tangles before they even begin to damage the brain.
Other topics popular among the onslaught of media coverage last month were studies on the impact of education on Alzheimer’s, evidence suggesting women’s brains are especially vulnerable to the disease (highly relevant as nearly 2/3rds of the individuals living with Alzheimer’s are women), and the promise of new detection methods, including saliva tests, that are less costly and invasive.
As the world’s largest dementia forum, AAIC propels research forward and places it into the public’s eye. When researchers have a platform to share findings, they gain access to more resources to scale up their studies and pursue groundbreaking discoveries. For many, these discoveries aren’t just about lifestyle changes, they are a life-changing reality. Brian Whitney of Manson, Washington, attended AAIC this year as a research volunteer and participant in DIAN-TU, Dominantly Inherited Alzheimer’s Network Trial. Brian qualifies for DIAN-TU, because he carries a rare deterministic gene mutation that will someday develop into Alzheimer’s disease. For Brian and his family, this research means hope, “It’s the first time that they’ve ever looked at a drug and tried treatment on people before they showed symptoms of Alzheimer’s. That’s exciting to me. To me that’s a reason to hope,” said Brian.
However, Alzheimer’s research hasn’t always been popular or hopeful. Dr. David Knopman, a neurologist with the Mayo Clinic’s Alzheimer’s Disease Research Center, told NPR at AAIC how the times have changed for Alzheimer’s research:
“I’ve been involved [in Alzheimer’s research] since the early 1980s, and at that time, people didn’t even know what Alzheimer’s was. I think in the last 10 years, there has been a real quantum leap in sophistication that is truly staggering in its intensity, also its cost, but also in the kind of answers it can deliver.”
Alzheimer’s Research: The Quantum Leap
Dr. Knopman hits two very important points that have driven Alzheimer’s disease research to its current popularity: 1. Awareness and 2. Funding.
Films such as Glen Campbell’s I’ll be Me and Lisa Genova’s Still Alice, starring Julianne Moore, have increased awareness of Alzheimer’s by showing the harsh realities of the disease and the devastation families experience as they watch their loved ones suffer. Simply telling the world about Alzheimer’s, however, isn’t enough–even if you are a celebrity. To conquer a disease as mysterious as Alzheimer’s, we need research, medical trials and scientific studies; we need funding.
The nation is finally beginning to understand the need for funding. Currently there are 5.1 million Americans living with Alzheimer’s disease. The cost to care for those individuals this year will total $226 billion. By 2050 the number of American’s living with Alzheimer’s is expected to triple to 13.8 million and the cost of care will rise to $1.1 trillion.
We need a cure. And finding one is becoming a priority for the federal government.
The National Plan to Address Alzheimer’s was passed in 2012, to prevent and effectively treat Alzheimer’s by 2025. At the time, the National Institutes of Health (NIH) dedicated $503 million to Alzheimer’s research annually. This year, Congress unanimously passed the National Alzheimer’s Project Act and the Alzheimer’s Accountability Act to increase funding to $591 million. The NIH predicts spending for Alzheimer’s research will increase again to total $638 million in 2016. These increases have aided progress, however annual funding for Alzheimer’s disease pales in comparison to cancer (5.6 billion annually) and HIV/AID’s (3.1 billion annually).
Advocates like Myriam Marquez are knocking on legislators’ doors demanding more. Myriam carries the same rare genetic form of Alzheimer’s that Brian and his family carry. “When I learned that I had Alzheimer’s, I decided I was going to be a warrior and help find a cure, because I have children,” said Myriam. “Statistically speaking, if my mother has four children and three of us have Alzheimer’s and I’ve got four children….” she trailed off concerned for her children. The reality of Still Alice isn’t one she has to face herself; it’s a reality her children could live as well.
Myriam isn’t a celebrity, but her story has convinced legislators that funding Alzheimer’s research is worth the investment. “Alzheimer’s has affected too many families in Washington State and across the country, so it is critical we invest in research and programs that work toward finding a cure,” said Washington State Senator Patty Murray. “It’s so important to hear the stories of those whose lives have been impacted by this disease. Their passion and dedication is a daily reminder of why we must keep fighting for a cure.”
Myriam, like Brian, also volunteers for the one of four preventative studies currently underway. She travels to Los Angeles every year for testing that includes a spinal tap so researchers can understand her form of Alzheimer’s and possibly decode other forms of dementia in order to prevent the disease.
Thanks to a grant from Washington University in 2008, DIAN (Dominantly Inherited Alzheimer’s Network) was established. Later, in 2012, the Alzheimer’s Association, the largest private funder of Alzheimer’s research in the nation, was convinced of DIAN TU’s potential and awarded it the largest grant in Association history. These seed grants are critical to innovative studies that drive research forward. Without private and nonprofit funding, DIAN TU could not have provided research results to apply for and receive a $45 million NIH grant.
More organizations are getting into the business of funding innovative research that makes quantum leaps possible. Collaboration is essential. Recently, the Paul G. Allen Family Foundation awarded $7 million in Alzheimer’s research funding, $500,000 of which will go to grants discovered as part of a larger call made by the Alzheimer’s Association. Nonprofits and private organizations will never be able to back research with the level of funding that comes from the NIH, but they can support unconventional and perhaps risky research that has the potential to pay off big.
Alzheimer’s Research: Risks vs. Pay offs
Judy Lytle, Science and Technology Program Officer with the Paul G. Allen Family Foundation, lead the team selecting Alzheimer’s research grants. “Taking chances…that’s something that Paul Allen does,” said Judy. “Microsoft was a chance, right? He likes to go after those things that are moon shots…so if something works, it should have a rather large impact on the field either in the short term or the long term.”
Alzheimer’s disease has touched Paul Allen’s family, and it motivated him to fund research. A partnership with the Alzheimer’s Association was a natural step; a step that could make the scientific advancements necessary to find a cure by 2025.
The risk organizations take investing in the most innovative Alzheimer’s research is worth the payoff, because the world needs another decade of quantum leaps. Moon shots change the world for people like Brian and his family. “Hopefully at some point [my daughter] is going to be able to look back and say, ‘Man, my dad, my family, we got it done!” said Brian.
In 2025 Brian’s daughter will be 30 years old, not far from her family’s average age of younger onset Alzheimer’s disease. The future she holds depends entirely on whether we give innovate research a fighting chance to create a new future for her family.