Bob Skemp’s mother, who raised 10 children and led a Girl Scouts Council, has Alzheimer’s disease. She still recognizes loved ones but forgets where she is and what day it is.
Sigrid Knuti’s mother, a meticulous dental hygienist and seamstress rendered lost and vacant by Alzheimer’s, died from the disease.
Skemp and Knuti are among more than 1,500 people in UW-Madison’s Wisconsin Registry for Alzheimer’s Prevention, or WRAP. It’s the country’s largest study of children of parents with the disease, who face a greater risk of acquiring it.
Alzheimer’s affects about 5.2 million Americans, including more than 100,000 in Wisconsin. Dementia costs an estimated $214 billion a year, reportedly more than cancer or heart disease. Findings from WRAP and other studies are reshaping how experts think about Alzheimer’s and what people can do to try to prevent it.
Obesity, smoking, stress and other factors may have as much to do with getting Alzheimer’s as aging does, said Dr. Mark Sager, longtime director of WRAP until he retired last month.
“What we view as a disease of old age is actually a disease of lifestyle and environment to some extent,” Sager said.
A University of California-San Francisco study in 2011 found that seven factors — diabetes, high blood pressure, obesity, smoking, depression, physical inactivity and low educational attainment — contribute to up to half of Alzheimer’s cases.
Lowering the prevalence of the risk factors by 25 percent could prevent nearly 500,000 Alzheimer’s cases in the U.S., the researchers found.
Staying mentally active is also key: A study in France last year found that people who delay retirement reduce their risk of dementia by 3.2 percent for every extra year worked.
Meanwhile, Georgetown University researchers said in March that an experimental blood test — based on 10 lipids, or fats — can predict, with 90 percent accuracy, whether people in their 70s will get Alzheimer’s. The findings need to be confirmed by larger studies.
Reducing the risk
Ozioma Okonkwo, a geriatrics researcher at UW-Madison, will begin a study this summer looking at how two types of exercise affect brain health.
The study, funded by the Alzheimer’s Association, expands on findings from WRAP participants’ reports of their activity levels.
Those who report higher levels of physical activity have less age-related memory loss and fewer age-related changes in brain markers linked to Alzheimer’s. The markers include amyloid protein, glucose metabolism and hippocampus volume.
“The effect of age on all four study measures was diminished with increased physical activity,” Okonkwo said.
There is no “definitive evidence” on what can prevent Alzheimer’s, according to the National Institute on Aging. But since the few drugs available to treat the disease generally have little effect, the growing findings on prevention are promising, Sager said.
“You can, without medication, reduce your risk,” he said.
Skemp, 57, of La Crosse, eats a balanced diet and stays active biking, cross-country skiing and helping his parents maintain their hobby farm. Because of his mother’s Alzheimer’s, “I’m more conscious I should be doing these things,” he said.
Knuti, 72, solves sudoku puzzles, teaches skiing and bikes or walks daily, counting her steps with a fitness wristband. She tries for 10,000 steps a day.
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“I’m in the biggest race of my life,” Knuti said of trying to prevent Alzheimer’s, which claimed her mother at age 88. “I’m trying to stay ahead of the curve.”
Nationwide, as the population ages, staving off Alzheimer’s and other types of dementia is also a financial challenge. Dementia costs $214 billion a year, according to the Alzheimer’s Association. Direct dementia care purchases in 2010 were $109 billion, compared with $102 billion for heart disease and $77 billion for cancer, according to a Rand Corp. study last year.
Testing cognitive decline
WRAP, which started in 2001, follows about 1,000 children of people with Alzheimer’s and a control group of about 500 similar adults who don’t have a family history of the disease.
The study recently received a $4.2 million federal grant to continue for at least another five years.
Participants periodically undergo cognitive testing and fill out questionnaires about their well-being, with some volunteering for brain scans and spinal taps. Researchers probe the test results for early signs of dementia.
Last year, organizers added a new feature: Participants can learn if their cognitive tests suggest a significant decline, then ask their doctors for an assessment for Alzheimer’s or other dementia.
Since there is no sure way to prevent or treat Alzheimer’s, offering to share the WRAP findings raised ethical questions and required approval from UW-Madison’s Institutional Review Board, Sager said.
But more than 90 percent of WRAP participants surveyed wanted to know of a potential decline.
“We were asked to do this,” Sager said.
Worries about the future
Skemp agreed to be notified of a decline but hasn’t received such news. He says he doesn’t worry much about getting Alzheimer’s. “If it happens, it happens,” he said.
He and eight of his nine siblings, ages 48 to 61, are in WRAP. Most live near their mother, age 85, who lives at home with their father in La Crosse. The couple still travels twice a year to Arizona.
Frances Skemp was diagnosed with Alzheimer’s about 10 years ago, but the progression has been relatively gradual, her son said.
Knuti, who agreed to be notified of a decline, is one of a handful of people Sager has contacted to inform them of potentially troubling test results.
Knuti had a difficult cognitive testing session last fall, she said. A tester showed her four geometric figures, which she was supposed to re-create on a blank piece of paper. When she wasn’t able to do that, she broke down and cried.
When Sager called, he asked about what was going on in her life. She said she was depressed over the sudden death of her 46-year-old daughter from a heart condition about a year earlier.
That could explain the poor effort on the tests, Sager said.
Knuti, who has two other daughters, ages 45 and 31, wants them to know more about preventing Alzheimer’s by the time they are her age. Knuti’s sister is also in WRAP, and their husbands are in the control group.
Knuti remembers her mother, Hilde Erickson, looking vacant and yelling that she was lost during her final months at an assisted-living facility.
“That’s the fear we children live with,” she said. “I want to be the last person in my family to have to worry about this.”