They watched helplessly as Alzheimerâ€™s robbed their loved ones of memory and cognition. Theyâ€™ve agonized over the slow progress toward a cure for a scourge thatâ€™s long defied treatment. Theyâ€™re terrified the disease could someday come for them.
As one failed drug trial after the next has dashed hopes for a medical miracle, many healthy people haunted by the specter of Alzheimerâ€™s are turning to research that suggests lifestyle changes â€” from fitness regimens and brain games to better diets and social interactions â€” might help stave off the disease or push back its onset.
â€śItâ€™s very scary [knowing] that it could happen,â€ť said Ann Whaley-Tobin, 68, of Canton, a retired schoolteacher whose mother died of Alzheimerâ€™s. Whaley-Tobin bicycles, practices yoga, and tries to keep her mind active through reading and crossword puzzles.
â€śIâ€™m going to do anything I can do to delay or prevent it,â€ť she said.
For drug makers, developing the first Alzheimerâ€™s therapy has long been seen as the great white whale: the toughest challenge and biggest opportunity. An estimated 5.7 million Americans, two-thirds of them women and the great majority over 65, live with the condition, according to the Alzheimerâ€™s Association. The cohort is projected to swell to 14 million by 2050, as the population ages. Todayâ€™s drugs treat symptoms but donâ€™t alter the diseaseâ€™s course.
More than a dozen seemingly promising experimental medicines have flopped in clinical trials over the past three decades. The latest failure came this month, when Eli Lilly and AstraZeneca scrapped their drug candidate, lanabecestate.
By contrast, some of the most encouraging Alzheimerâ€™s news of late has come not from pharmaceutical labs but from studies that take a more holistic look at how to grow old while at risk of the disease. A two-year study in Finland, for example, found in 2014 that what researchers call preventative steps, such as more exercise and better nutrition, helped improve the mental function of more than 1,200 older people deemed at risk of developing dementia.
In an effort to expand that research, a $20 million clinical trial sponsored by the Alzheimerâ€™s Association is recruiting 2,500 volunteers ages 60 through 79 at up to five sites across the United States. The two-year study, called US POINTER, will evaluate the impact of exercise, nutrition, cognitive and social interaction, and self-management of medical conditions.
â€śWeâ€™re looking at anything and everything,â€ť said Susan Antkowiak, vice president of the associationâ€™s Massachusetts and New Hampshire chapter. â€śWe think these lifestyle interventions can make a difference.â€ť
Medical researchers say thereâ€™s no evidence fitness, healthy eating, or mental exercises can halt the progression of Alzheimerâ€™s once it has begun. But they express cautious hope such behaviors can at least postpone its onset.
â€śI think it complements but canâ€™t replaceâ€ť drug discovery, said Dorene Rentz, an associate professor of neurology at Harvard Medical School.
â€śThere is some evidence that a lifetime of cognitive engagement and cognitive activity may create more neuronal connections in the brain that can give you some resilience. If you can push the onset of Alzheimerâ€™s back longer, you can save billionsâ€ť in the cost of caring for people with dementia.
For families affected by dementia, trials of anti-Alzheimerâ€™s drugs aimed at breaking up tangles of amyloid or tau protein deposits in the brain can seem plodding and remote. Lifestyle changes are relatively simple to adopt, and within their control.
Donna Lajoie, 58, has Alzheimerâ€™s on both sides of her family. A marathon runner, she runs or works out in the gym almost every day. She also eats plenty of fish and vegetables and takes several daily supplements, such as tumeric and ginkgo biloba, advertised as promoting brain health. â€śKeeping your body physically stimulated helps your brain,â€ť she said. â€śI think itâ€™s essential.â€ť
Recent research on the benefits of mental exercise has also been encouraging. A study in Germany last year demonstrated that older factory employees who had more work task changes showed greater â€ścognitive plasticity,â€ť giving correct answers to questions more quickly and better processing new information.
The findings â€śargue for non-phamacological interventions,â€ť said Ursula Staudinger, who conducted the study with colleagues at Jacobs University in Bremen, Germany, and now teaches at Columbia University.
More workplace research is underway. Staudinger and her team are taking a larger look at the tasks of US blue- and white-collar workers over 50 years old gleaned through analyzing a massive database compiled at the University of Wisconsin.
â€śCognitive development advances when people challenge themselves,â€ť said Jackie James, codirector of the Boston College Center on Aging & Work, which studies flexible work options.
Members of families with Alzheimerâ€™s say that mental and physical workouts confer many health benefits, even if they are not an alternative to a cure.
Whaley-Tobin, the Canton cyclist, biked 62 miles through parts of New Hampshire and Massachusetts on June 9 in the 2018 Ride to End Alzheimerâ€™s, the disease that afflicted her late mother and aunt, as well as a cousin. She completed the charity race in under five hours.
â€śI was cycling with a couple of people who were 30 years younger than me,â€ť she said.
Lajoie, the marathon runner, who lives in Bostonâ€™s South End and owns a business that buys furnishings for hotels, said her exercise â€śis a good overall reliefâ€ť from the stresses of her life. Since losing her father and grandmother to Alzheimerâ€™s, she tries to keep up with the scientific research and compares notes with her two sisters who are also fitness buffs.
â€śWhen you have family members youâ€™ve lost and you see what they went through, it can be extremely frustrating,â€ť she said. â€śBut you canâ€™t give up hope.â€ť
Another marathoner, Wilmington graphics designer Nicolle Renick, was inspired by distance running as a teenager, when her father took her to see the Boston Marathon. Years later, when her dad was diagnosed with frontotemporal dementia, which causes cognitive and neurological problems similar to those brought on by Alzheimerâ€™s, she began running, partly to honor him.
Renick, 38, has completed five Boston Marathons, raising money for research and sometimes training with others whose loved ones have suffered from Alzheimerâ€™s. She visits her father at an assisted-living facility in Woburn and thinks of her running as part of his legacy.
Somewhere deep down, she said, she and her fellow runners hold onto the hope that all those miles on the road will spare them their loved onesâ€™ fate.
â€śWe all kind of have that in mind,â€ť she said.