En español | It’s been 15 years since the last drug to treat dementia was approved. Breakthroughs remain elusive and the incidence of Alzheimer’s and other brain diseases continues to grow, from 6 million people in the U.S. today to an estimated 14 million in the coming generation. Of the leading causes of death still on the rise, dementia is the only one that doesn’t have a cure or an effective treatment.
These are among the dramatic figures addressed Monday by a panel of experts convened by AARP to discuss the state of dementia research and funding for it.
The Dementia Discovery Fund (DDF), a London-based investment fund set up to finance dementia research, reached its funding target of $350 million, thanks largely to a $60 million investment from AARP announced Monday. With this new infusion of cash and greater access to data, DDF hopes to see three to five new treatments emerge in the coming decade.
AARP’s investment, which coincides with its 60th anniversary, was announced earlier in the day by Jo Ann Jenkins, AARP CEO. “For our 38 million members, it’s the number one issue they fear the most,” she explained. The panel, moderated by Katie Couric, also included Kate Bingham, managing partner of SV Health Investors, the venture capital fund that runs the DDF; Peter Pronovost, chief medical officer at UnitedHealthCare Inc., which is also invested in the fund; and technology journalist Natali Morris. Another player in DDF’s quest, Microsoft founder Bill Gates, provided a videotaped testimonial to help introduce the panel.
Pronovost outlined three reasons that finding effective treatment is so hard: First, the disease typically begins decades before symptoms appear; second, it’s difficult to do studies that compare healthy people with people who suffer dementia; and third, research is oriented toward finding simple answers, when the causes of dementia may be many.
As an example of how research is struggling with the complexity of the disease, Pronovost explained that while much recent research has focused on amyloid beta (a protein found in the brains of Alzheimer’s patients), attempts to address the protein have not yielded any results in improving the lives of patients. Meanwhile, recent studies have linked dementia to issues as varied as the onset of menopause, leaky gut syndrome and the herpes virus.
“We think there are lots of different drivers,” said Bingham, who cited immunology as one of the most promising fields of investigation. “We will be looking hard at obesity, at inflammation. I am very optimistic because we have a varied approach to looking at the disease.”
Morris cited exactly that approach as a reason to remain hopeful. “I’m encouraged by the holistic view,” she said, citing environmental toxins, head trauma and disruptions in the microbiome as possible “dementagens” — factors that may play a role in causing or exacerbating dementia.
Because it’s impossible to tell who is developing dementia until symptoms appear, the DDF’s immediate goal is to develop drug therapies that would hold dementia in its place, Bingham said. But the best possible outcome is to be able to identify future patients before they start to develop symptoms. “We don’t wait for people to have heart attacks before we start treating them,” Bingham said. “We need to identify who is at risk from dementia.”
Treatments that prevent the onset of brain diseases would lift an enormous burden off of caregivers, Pronovost said. “The average cost to care for a dementia patient is $300,000,” he explained. And the burden isn’t just financial, it’s emotional. “One in five of the 35,000 calls [United HealthCare] gets every day is not from a patient, but from a caregiver,” he said.
And Jenkins cited the need to safeguard Medicare and Medicaid from the future impact of a dementia epidemic. “We can’t, as a society, allow this to get to crisis stage,” she asserted.
“We see this as an investment in hope,” Jenkins said. “If we give up hope, it says we’re comfortable with the status quo.
“And we’re not.”