In late October 1980, Dear Abby published a letter from “Desperate in NY.” Desperate wrote about terrible changes in her 50-year-old husband: he had lost his memory and lost his job. He couldn’t drive and couldn’t be left alone in the house. They’d just been told he had something called Alzheimer’s disease, but they’d never heard of it. Could Abby help? Abby told them to send a self-addressed envelope requesting information to a newly formed organization that ultimately became the Alzheimer’s Association. Desperate, plus another 35,000 people, sent so many envelopes that the fledgling organization was swamped. That was the first many in the U.S. had ever heard of this disease. Today, Alzheimer’s and other dementias are no longer unknown, and affect five million Americans.
Dementia research has received steady funding increases and major research efforts. We know a lot more than we did in 1980. And yet the cure for dementia has proved stubbornly elusive over these last nearly 40 years. Not only don’t we have a cure today, we won’t have one anytime soon, and not in time for the millions of baby boomers at risk. Here are the reasons: experimental dementia drugs have a 99.6 percent failure rate, vastly higher than the rate for experimental cancer drugs. As a result we’ve had no new dementia drugs approved for nearly 15 years. And, successful treatments for major diseases generally require a multidrug/multimodal approach. That’s how we’ve made progress against AIDS and cancer. So we’ll need not one but several wins, when we’ve had none at all. Most importantly, even if we find drugs that work, the need to care for people with dementia is here for decades at least. The brain pathology that causes dementia forms over decades. It takes a decade to get a drug through trials and to the market. Before any new drug emerges, millions more people will develop dementia. In fact, if drugs successfully slow disease progression, we may need to care for more people with dementia, since survival rates will increase.
Supporters of drug research will object to my comments, saying that now is the time for more, not less, pharmaceutical research. They’re not entirely wrong—I am a physician and support continued scientific research on dementia. Even so, we already know there won’t be a dementia cure in time for the millions who will develop it in the decade and more ahead of us. That’s why I’m worried about our failure to create a realistic national policy to provide and pay for dementia care. We’ve focused on cure, and that’s not wrong, but we need to focus more on care. We need to provide a more realistic and just view of how to deal with the wave of dementia for our aging population.
Family members, often but not always women, bear extraordinary burdens to care for loved ones, working fewer paid hours, forgoing promotions and retirement savings and increasing their own risk for needing dementia care they can’t afford. But hiring a paid caregiver raises daunting issues. Home-care workers gained federal protection for overtime and minimum wages only in 2015, regulations from which they were exempt for decades. Many of these workers, predominantly women of color, are paid so poorly they rely on food stamps even while working multiple jobs, and lack health insurance, workers’ compensation, vacation and sick leave. We can’t honorably solve our problems by mistreating those caring for the most vulnerable. Right now, our only plan for middle-class elders is to let them lose all their assets to dementia care and then fall back onto Medicaid, the program for the poor. This nonplan is unsustainable. We’ll wipe out the safety net for the poor and the middle class if we try to crowd everyone into the same leaky lifeboat. The market for long-term care insurance is collapsing, with dozens of companies abandoning the field in recent years. Policies grow more and more expensive with less and less coverage, and many people, including me, don’t qualify for long-term care insurance because of preexisting conditions. I’d like to pay for dementia care without bankrupting the family, burdening our adult children or forcing a hardworking helper to tolerate unacceptable pay and benefits. If we focused more on the reality of dementia care, and less on the fantasy of eradication, we might deal better with these pressing issues.
We need care that is empathic and affordable, and that offers choices for those with dementia and their caregivers. Some state and federal policies are starting to provide more-flexible options, especially ones to keep people with dementia in their homes as long as possible. But we need to do more. What would be smart is also what would be right: we need to establish a viable plan for paying for long-term care. We need courageous legislators to step up with a realistic solution to this massive problem. When and if drugs offer a real benefit, they will be welcome as one component of care. There is no magic pill today, and there won’t be one tomorrow. My mother and grandmother died of dementia. Dementia is coming for me some day, and for millions of other baby boomers who will need care. The fix won’t come in pill form, and that’s the bad news we’d better face.
Dr. Powell is director, Montefiore Einstein Center for Bioethics and Master of Science in Bioethics. She holds the Dr. Shoshanah Trachtenberg Trackman Faculty Scholar Chair in bioethics, and is professor, epidemiology and psychiatry at Albert Einstein College of Medicine.
This post was originally featured on The Doctor’s Tablet, the blog of Albert Einstein College of Medicine.