I can’t say that often enough, so I’m going to say it again: dementia rates are falling. Previous small studies have found the same trend, and a large national survey recently confirmed it. The total number of cases will rise along with the number of older people in the population, but the likelihood of any given person getting dementia has dropped—significantly. Lead author Dr. Kenneth Langa estimates the decrease at 25 to 30 percent compared with the rate in the early 1990s. And people are being diagnosed at older and older ages.
This comes as a surprise to epidemiologists along with the rest of us, especially give a surge in diabetes among older Americans, which significantly increases the risk of dementia. It’s part of a larger trend that that New York Times has dubbed a “medical mystery of the best kind”: common diseases of aging are in retreat in the United States and some other wealthy countries.
A recent study from the National Bureau of Economic Research confirms it: “the increase in life expectancy in the past two decades has been accompanied by an even greater increase in life years free of disability.” In other words, although longer lives mean spending more years with disease, “disability-free life expectancy” has risen faster than lifespan. Better treatments for heart disease and for vision problems—cataract surgery, that is, which has become a simple outpatient procedure—are responsible for much of the improvement, as are better diagnoses, but they don’t explain the trend. Although Parkinson’s, dementia, and diabetes remain huge concerns, even the rate of “all-cause mortality,” which lumps together chronic diseases, is falling. And every one of those diseases links to aging. Perhaps, all these degenerative diseases share something in common, something inside aging cells themselves, suggests Dr. Steven R. Cummings of the California Pacific Medical Center Research Institute. The cellular process of aging may be changing, in humans’ favor. That seems like a stretch, but more research into the biology of aging is definitely welcome and badly needed.
Why don’t more people know these things—especially the good news about dementia rates? A 2012 Marist poll found that Alzheimer’s had edged out cancer as the disease Americans fear most. Part of the reason is just human: fears loom large because danger affects survival. Part of it is because of media coverage: scary stories pull people in, and dementia is a terrifying prospect. And the alarm garners research dollars. In the words of advocate Christine Bryden, who lives with dementia, “What is the cause of the stigma and fear? It’s the stereotype of dementia: someone who cannot understand, remembers nothing, and is unaware of what is happening around them. This stereotype tugs at the heartstrings and loosens the purse strings, so is used in seeking funds for research, support, and services. It’s a Catch-22, because Alzheimer’s associations promote our image as non-persons, and make the stigma worse.” What age scholar Margaret Gullette calls “our irrational fear of forgetting” has made such deep inroads into our psyches that routine memory lapses provoke terror, and diagnoses invoke thoughts of suicide.
The odds of dementia increase with age, but the illness is not typical of aging. Our fears are way out of proportion to both the scale and the nature of the threat. Falling dementia rates ought to reduce those fears, as should the fact that the world is becoming a better place to be a person living with dementia, thanks to the work of remarkable advocates like Bryden, grassroots movements like Momentia in Seattle, and geriatrician and thought leader Bill Thomas. Thomas proposes an approach based on his Eden Alternative nursing homes, humane communities where people with dementia thrive. Since there’s no cure for the disease, Thomas point out that, “the tool we have is culture.” Few of us are medical researchers, but each of us has the capacity to reduce the stigma and suffering associated with dementia through culture change. What can we learn from people living with dementia, how can we learn to face the disease on an emotional level, and how can we change the culture to become more inclusive?
Thomas is taking this idea on the road with his Disrupt Dementia tour, which advances the idea that a dementia-inclusive world is a human-inclusive world. That world, says tour member and psychotherapist Kyrié Carpenter, “offers a cure of sorts for what we currently call dementia.” The tour blends film, music, story-telling, and cutting-edge research into an event that turns conventional thinking on its head in a very welcome way. The tour kicked off in California this week, and it’s probably coming to a city near you. Check out the itinerary here. And be less afraid.