One woman’s struggle with memory problems highlights the issues of dementia, a mounting problem as the population ages.
As a senior at University City High School in 1960, Sanford J. Kornberg was part of what would become the most comprehensive study of teenagers ever conducted.
Against the backdrop of the heated space race between the U.S. and the Soviet Union, the test of 440,000 students set out to identify the strengths and interests of the new generation to see if American teens were being guided into a career that would make the best use of their talents.
Now, 58 years later, Kornberg is being tested again, part of a study focusing on memory and cognitive skills in an effort to help unlock the mysteries of Alzheimer’s disease, the most common form of dementia.
“I very, very vaguely remember taking the test when it was administered in 1960,” said Kornberg, 76, who now lives in Connecticut. “I basically forgot about it. With Alzheimer’s and other corresponding diseases, it’s fascinating that they are doing this follow-up.”
The National Institute on Aging estimates that by 2050, the number of people living with Alzheimer’s will more than triple, to 16 million, and the cost of caring for those with the disease will exceed $1 trillion a year.
The tests then and now are part of Project Talent, a study originally developed by the American Institutes for Research, or AIR, and funded by the U.S. Office of Education.
There were three follow-ups to the initial test — at one, five, and 11 years after graduation.
“It was intended to be a 20-year study but funding ran out,” said Susan Lapham, co-director of Project Talent. However, the AIR did not want to let the large pile of data remain idle.
“We approached the National Institutes of Health and said: ‘Hey, we have this really cool database. Wouldn’t it be great to follow up 50 years after high school and learn what happened, focusing on dementia and what some of the precursors might be?”
The group invited itself to more than 700 50th high school reunions of those who graduated in the years 1960 to 1963 to question attendees on what they would like to see in a follow-up study.
“As we age, we fear losing our memory” was the overwhelming sentiment, Lapham said. Of the original participants, Project Talent was able to locate 96 percent of them (26 percent of those tested in 1960 have died).
With funding by NIH, a smaller sampling, about 22,500 of the high school students, have been asked to participate, receiving letters or emails over the summer.
“Our aging population means that the burden of Alzheimer’s disease and other cognitive diseases continues to grow,” stated the notice participants received. “The newest Project Talent follow-up study will collect information on how memory and other thinking activities changes with age, and will be combined with all the data that you have provided since entering the study in 1960.
“This will give researchers a unique and extremely valuable opportunity to understand the many factors that determine why some people develop dementia while others do not.”
The initial group included students from 1,353 high schools including 34 in Missouri. Local school districts in addition to University City included Maplewood-Richmond Heights and Pattonville as well as Christian Brothers College High School and Academy of the Sacred Heart in St. Charles, which closed its high school in 1972.
The Post-Dispatch has created a private group for those living with dementia or caring for someone who has symptoms.
The study, continuing through December, is in three stages. First, a paper questionnaire “that fills in the gaps” including list of places lived, jobs held and family life was sent out. That will be followed by a 20-minute phone interview focusing on cognitive assessment. Participants will be run through a series of tests including counting backwards by various intervals and repeating a list of words they were given earlier in the conversation.
The last part will be an online survey, focusing on health history.For Judy Arnowitz, a 1962 graduate of University City High School, she is glad to be part of a study that could help prevent dementia, something her father had.
As people get older, their conversations skew toward declining health. For Arnowitz, it’s her recent bout with double pneumonia. For her friends, it is hip and knee replacements.
“We just had our 55th reunion last year. People would say: ‘Did you hear so and so has cancer?’ It’s just horrible. Our parents used to talk about this stuff. Now it’s us.”
The new round of tests is expected to be a conversation at this weekend’s reunion of the University City High School class of 1963. That’s when Robert Brownstein, who now lives in Chicago, graduated.
Like others who took the initial test, Brownstein was asked to pick from a list “the one occupation you expect to make your career” and “the one you would most like to enter.” Becoming an architect — the route Brownstein took in his studies at Washington University and the University of Pennsylvania — was not a choice so he went with “some other occupation different from any above.”
Lawyer, doctor, teacher and engineer were on the list along with housewife, farmer, clergyman and secretary. But in 1960, computer scientist and information technology specialist were not.
Individual test scores from the 1960 tests were mailed back to the schools that summer, to be distributed to the students by guidance counselors. However, in many cases, that did not happen.
“The return rate was sporadic,” Lapham said. “Some schools didn’t even have a guidance counselor.”
As participants began the new round of questions, many were anxious to share how life turned out.
“We had a guy tell us that he scored really high in English and now he’s a math teacher, so ‘ha, ha, you guys were wrong,’” Lapham said.
A woman shared that while she scored high in accounting, her guidance counselor told her: “Don’t worry your pretty head, you’ll be a housewife anyway.” Initially, that was the case. But after raising a family — and after a divorce — the woman went back to school and got her CPA.
Arnowitz, who lives in west St. Louis County, was asked in the latest round of questions how old she feels.
“I put down 65 because I don’t feel 74”. She also was asked if she was “happy in life” and “safe in her home.” She marked yes to both.
The goal is to ask a broad array of questions that ultimately help determine factors that put people at greater risk of dementia, Lapham said. Participants in the latest round of testing have been eager to help, she said.
“They tell us: ‘Even if you don’t solve the problem of dementia for me, I want to solve it for my kids and grandkids.’”