Joyce Botti, 60, a former high school Spanish teacher from Bournedale, Mass., was diagnosed with early-onset Alzheimer's disease last year.
When high school Spanish teacher Joyce Botti started complaining about memory problems a few years ago, doctors dismissed her concerns as normal signs of aging.
But new research being presented Wednesday at an international Alzheimer's conference suggests that Botti's worries -- like those of others suffering so-called "senior moments" -- could be the earliest indicators of devastating brain disease.
Botti, now 60, was forgetting little things – her keys, coffee at the drive-through, scheduled meetings – but she was also making mistakes when writing on the blackboard or trying to recall certain words in class.
Then, one day, the Bournedale, Mass., woman turned off the water in the shower at home and couldn’t remember how to get out.
“All these things that we try to explain away. I knew there were too many things coming together,” said Botti, who demanded to see a neurologist and was diagnosed last year with early-onset Alzheimer’s.
She said she wishes that doctors would have paid closer attention to her initial concerns, a theme echoed this week by a raft of new research at the Alzheimer's Association International Conference in Boston that shows the memory and thinking lapses people notice themselves could be early markers of risk for Alzheimer’s disease.
Not to scare anyone – especially the 1 in 8 baby boomers who report memory problems, according to a recent report – but patients' own concerns may predate clinical changes in the brain and in cognitive functions that may indicate disease, the findings suggest. In other words, people who think they have Alzheimer's disease just might be right.
“Years before a clinical diagnosis of Alzheimer’s disease, the individual may be the best judge that his or her memory isn’t what it used to be,” said Rebecca Amariglio, a researcher in the neurology department at Brigham and Women’s Hospital in Boston.
Amariglio, along with other researchers in the U.S., France and elsewhere studied volunteers in their 70s or 80s -- and found links between self-reported memory concerns and potential indicators of cognitive impairment or actual disease. In several separate studies, their work detected associations between memory complaints and levels of a brain protein known as beta-amyloid, links with genetic markers for Alzheimer’s disease and predictors of diagnoses of mild cognitive impairment (MCI), or dementia.
“It’s just now getting appreciated by researchers in the field that we shouldn’t ignore these subjective memory concerns,” Amariglio told NBC News.
Joyce Botti poses for a portrait at her home in Bourne, Mass., on Wednesday July 17, 2013.
Early awareness of so-called subjective cognitive decline, or SCD, could bolster research that will one day lead to screening, treatment and even prevention of the disease that affects more than 5 million Americans and has no cure, noted Heather Snyder, director of medical and scientific operations at the Alzheimer’s Association.“What we've called Alzheimer's disease is actually the later stages of the disease," she said. "You can go back potentially further and identify biological changes a decade or more earlier."
In a study of nearly 200 cognitively normal people, Amariglio and her colleagues queried the participants about their memory concerns – and then used PET scans to measure the build-up in their brains of beta-amyloid, a protein that is a known risk factor for Alzheimer’s disease.
They found that the people with the greatest concerns about their memory problems also had the highest levels of beta-amyloid in their brains.
What’s more, the link between memory concerns and higher beta-amyloid levels was greater in participants who had higher levels of education and work status.
“If there are any detriments, they’re more apt to notice that they’re not able to keep up at this very high pace,” Amariglio explained.
In another study presented Wednesday, researchers tracking nearly 4,000 elderly nurses found that early concerns about memory problems were linked to later declines on tests, particularly in people with the apolipoprotein E4 gene, known as ApoE4, the strongest known marker of Alzheimer's disease.
Cecilia Samieri of Research Center Inserm U897 in Bordeaux, France, worked with colleagues at Brigham and Women's to study some 3,861 nurses enrolled in the Nurses' Health Study, who had been been evaluated for the ApoE4 gene. The participants were asked about seven specific memory symptoms and then given a battery of objective memory tests four times over the next six years, from 1995 to 2001.
In carriers of the ApoE4 gene, those worried about even a single memory problem showed signs of decline in verbal memory over the six years, reported Samieri.
In carriers without the gene, concerns about three or more memory symptoms predicted memory decline, the researchers found.
Yet another study released Wednesday followed more than 530 volunteers aged 73 or older at the University of Kentucky for an average of 10 years. Researchers found that older people who reported changes in their memory were almost twice as likely to be diagnosed with mild cognitive impairment, or MCI, or with dementia years later, said Richard J. Kryscio, director of the school’s Sanders-Brown Center on Aging.
“We simply asked them, since the last time you came in, have you noticed any change in your memory?” recalled Kryscio. “Half the subjects said yes."
In the volunteers, who are part of the school's Biologically Resilient Adults in Neurological Studies project, the initial memory complaints occurred an average of six years before a diagnosis of dementia and nine years before a diagnosis of MCI, noted Kryscio.
But he and other researchers took pains to emphasize that their work shouldn’t necessarily worry everyone who’s ever had a memory glitch.
“In a sense, you have to separate them from the ordinary person who is getting older,” said Kryscio, noting that research subjects are particularly attentive to their memory skills because they know they’re going to be tested.
It’s important to distinguish between normal memory lapses and significant memory problems, which usually change over time and affect multiple aspects of daily life, noted Snyder, of the Alzheimer’s Association.
“If you forget your keys, that’s one thing,” she said. “If you forget what your key is for, that’s another thing.”
(For people who are concerned, Snyder recommends taking the Alzheimer's Association's test about the top 10 signs and symptoms of the disease.)
Patients who experience significant changes in memory or thinking should monitor their cognitive function the same way they monitor their heart health, she noted. If you’re concerned about problems, tell your family and see your health provider, she suggested.
That’s just what Joyce Botti did when she noticed that a lot of little memory lapses were “adding up” and that the trouble was escalating.
"In January it was happening once a week, but by spring it was happening every day, maybe three or four times a day," Botti said.
Though some people might not have wanted to hear such a difficult diagnosis, Botti said it was more important for her to know. "If there is a cure, try me first," she said.
She realizes that many memory complaints are, indeed, simple signs of aging. But others, she warned, are not.
“When you find yourself forgetting to get out of the shower, you should probably make a phone call,” Botti said.
JoNel Aleccia is a senior health reporter with NBCNews.com. You can reach her on Twitter at @JoNel_Aleccia or send her an email.
First published July 17 2013, 10:31 AM