Editor’s Note: Jo Ann Jenkins is CEO of AARP. She is the author of “Disrupt Aging,” now available in paperback. Follow her on Twitter @JoAnn_Jenkins. The opinions expressed in this commentary are her own.
Dementia is not a subject that produces a lot of good news and even when it does there tends to be a caveat attached – a qualifier, a “but.” Case in point: media reports last week of a study, published by the Journal of the American Medical Association, finding that the percentage of Americans age 65-plus who suffer from dementia declined by one-and-a-half percentage points, from 12% to 10.5%, over the 12-year period studied. It was good news, to be sure.
But here’s the caveat: over the same 12-year period the total number of people suffering from dementia in the United States grew, significantly, and now sits at nearly 6 million. In other words, although a slightly smaller percentage of older people are developing dementia, the skyrocketing size of the 65+ population means that, overall, there are more people with dementia – lots more.
Looking ahead, the Centers for Disease Control and Prevention (CDC) projects that over the next generation or so (by 2050) the number of people suffering from dementia in the US will increase about 250% to nearly 14 million.
None of which is intended to diminish the stalwart work of many of the brightest minds in medical science, who, collectively, have endeavored for more than 30 years to find ways to treat dementia. But progress has been painfully slow. Despite decades of research and billions of dollars spent, dementia remains not just incurable but largely untreatable. There’s not even a widely available screening tool for diagnosing the disease.
Digging deeper, it’s been more than 15 years since a new dementia drug, Namenda, was approved for use in the US and it’s one that brings only partial and temporary relief of symptoms of the disease while doing nothing to halt its progress. Since that drug’s introduction, more than 400 clinical trials for new dementia-focused drugs have failed.
Once-promising research focusing on eliminating brain plaques thought to cause dementia have, unfortunately, not produced effective treatments. With so much effort, yet such modest progress, it’s no surprise that many drug companies have scaled back, if not altogether abandoned, their research programs into new drugs to fight dementia.
Reason for hope
However, with stakes as high as those posed by dementia, hope springs eternal. An important example can be found in the work of the Dementia Discovery Fund (DDF), a venture fund focused solely on discovering and developing effective new drugs for treating dementia. Comprised of an influential group of strategic investors, including Bill Gates, DDF hasinvested in 17 companies and projects focused on dementia drug discovery with the goal of developing disease-modifying treatments for a range of different forms of dementia.
This week AARP will announce that it is investing $60 million in DDF’s work, in addition to securing participation from UnitedHealth Group and Quest Diagnostics, which have invested $10 million and $5 million respectively, totaling $75 million, to the DDF’s fight against a disease that has not seen a new approved treatment in more than a decade.
DDF has an active program of identifying new companies developing drugs to treat dementia. It is also creating and funding new projects that can develop into biotech companies in areas of strong scientific interest where none currently exist. DDF’s goal: by 2025, developing three to five new drugs that can aid people with dementia.
It will take years
But let’s not get carried away: DDF’s work will play out over years. And, even then, there’s no “guarantee” of success – only that stones are being turned over, possibilities pursued, new paths forged. Meanwhile, dementia’s scourge continues, largely unabated – and it’s not just those diagnosed with the disease who suffer.
Studies show that in the US alone more than 16 million unpaid family caregivers spend more than $230 billion a year providing 18 billion unpaid hours of support to relatives (mostly aging parents and grandparents) suffering from dementia. That’s more than 20 hours per week, every week – on top of working a job.
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If you’re untouched by the realities of caregiving so far, hopefully your good fortune will continue, but as the statistics from CDC and others show, the odds grow worse each year. That’s why lawmakers, the private sector and other stakeholders need to, in their own ways, join the fight against dementia, not just in terms of drug development, but on other fronts as well.
One example is the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, newly signed into law, with following bipartisan support, which requires the Secretary of Health and Human Services to bring representatives from the private and public sectors; caregivers, employers and others together to find establish a plan to support unpaid family caregivers.
Of course, even the best plans don’t always pan out, and you never get anywhere without trying.
But let’s be thankful that, when it comes to dementia, people are still trying.