Adeline Riley's family wasn't sure at first what was going on. "You'd tell her something over and over and she wouldn't remember," said her daughter Ann. "I'd have a whole conversation on the phone with her and she'd have no memory of it."
She was in her 70s, a time when memory does seem to slip a bit−forgetting a movie seen two weeks before or not remembering where you put your glasses are familiar symptoms of brains that are slowing down, along with the rest of the body. For Adeline Riley, however, that forgetfulness grew and began to erode her ability to be her normal, active self. "Before," said her husband, Joe, "she'd always have to be doing something."
A family doctor sent the Rileys to see a neurologist at the Stanford Center for Memory Disorders, where a team of diagnostic specialists tested Adeline Riley's memory and looked also at her blood and brain and medications for all possible explanations for her problem.
The diagnosis was dementia, a broad term that covers a group of conditions that sometimes involve memory, sometimes other parts of thinking, feeling and moving. Dementia can't yet be seen in a blood test, or an MRI, but what's happening in the brain is "more than just forgetting something every once in a while," said Riley's doctor at Stanford, Geoffrey A. Kerchner, MD, PhD. "It means a person's thinking has declined to the point that they've had a functional change−to where they need help with daily life."
Dementia is progressive. For many patients, the earliest symptom is that loss of memory; other problems may appear later. "I often tell my patients, 'Most of your brain is working really well,'" Kerchner said, "but some parts are not."
How Memory Works
Researchers know that memory is not just "one big thing," said Frank Longo, MD, PhD, Chair of the Stanford Department of Neurology and Neurological Sciences. "The hippocampus, the amygdala, and the cortex are the main gears, but they need other gears to move. They don't operate individually. Memory and its product, learning, depend on networks of neurons that connect one memory-function part of the brain with others, enabling the storage and transfer of information that is the core of human thought and emotion."
Memory begins with sensory input−sight, sound, smell, taste, touch. These fleeting snapshots of the world can only linger in a short term memory basket for only a few seconds before they disappear to make room for new experiences. When an experience is important−when we exercise conscious control over it−it's transfered into a long term memory basket. Awareness is required for that step. "If we want to hold on to information, we have to pay attention and rehearse it, until it consolidates," Longo said.
Long term memory is the reservoir of what makes us who we are. When we ponder and plan, we call up information from those long term memory stores and hold it temporarily in short term memory. That's what we do if asked to spell a word backwards.
Our life is a constantly running film which most of us rewind and fast-forward at will. When it stops running smoothly, we lose track of where we are and, ultimately who we are.
-Geoffrey A. Kerchner, MD, PhD, Stanford Hospital & Clinics Center for Memory Disorders
The interaction between short and long term memory is dazzling in its intricacies — and when normal communication between the two stops, the effect is devastating and pervasive. Adeline Riley's fading ability to move information to long term memory explains her short attention span. "It's hard to watch a movie or read a book if you don't have any recollection of what happened 120 seconds ago," said Kerchner. "Our life is a constantly running film, which most of us rewind and fast-forward at will. When it stops running smoothly, we lose track of where we are and, ultimately, who we are."
It is not safe for Adeline Riley to drive or to cook. Her husband won't let her do the laundry anymore, because she started putting quarters in the washing machine, and forgetting that the clothes needed to be dried. When she reads, Joe Riley said, "she can read maybe a chapter and she puts the book down. 'I'm bored now,' she'll say. I'll say, 'Is the story becoming a little thin?' 'No, I'm just tired of reading.' I keep after her constantly." She likes to watch television, he said, "but I limit her. I try to keep her occupied with little odds and ends."
Even talking about what's happening is difficult. The word dementia in popular culture conjures images of complete insensibility, Kerchner said, making conversation about it difficult. "Adeline hates the word dementia," said her husband, "so we just use the phrase, loss of memory."
To give promising new treatments their best shot, we need to start them at the first sign of the disease. We need to make the diagnosis early and accurately.
-Michael D. Greicius, MD, MPH, Director, Stanford Hospital & Clinics Center for Memory Disorders
More than 100 years since Alois Alzheimer described the pathological findings in the disease that bears his name, "our thinking has evolved," Kerchner said. "Dr. Alzheimer's patient was a 51-year-old woman, and for many decades, the disease was thought to be a very rare disorder of young people. The term senile dementia was used to describe thinking problems in old age."
Physicians and scientists now recognize that Alzheimer's disease is the most common cause of age-related cognitive decline. It now affects about 5 million Americans, a number that will rise with the growing percentage of individuals over the age of 65.
Treatments have been slow to emerge and currently target only the symptoms of the disease. However, disease-modifying therapies, discovered in Stanford's Alzheimer's Translational Research Program, are in various stages of early testing. Michael Greicius, MD, MPH, Director of the Stanford Center for Memory Disorders, said the development of effective treatments depends on development of sensitive diagnostic tests. "To give promising new treatments their best shot, we need to start them at the first sign of the disease," he said. "We need to make the diagnosis early and accurately." Seeing what's happening inside the brain is crucial. Greicius' brain imaging lab has developed a functional MRI test to document disrupted connections between regions in the brain's memory network−the kind of information that should allow earlier diagnosis.
For now, the most important therapy is an active lifestyle. "There is strong evidence that regular aerobic exercise and mental stimulation can prolong functional independence," Kerchner said. Support groups for caregivers and other resources are equally important. Stanford Hospital's Aging Adult Services works closely with the Center for Memory Disorders to make sure that patients and their families get the comprehensive care they need.
Planning a Future
Getting accurate information, Kerchner said, can be very helpful psychologically and practically. "The one thing that I hate to see is families in denial. 'Mom's getting old. She'll be fine.' Although these conversations seem unpleasant to initiate, it is far better to discuss plans for long term care and housing with a loved one before something bad happens."
Adeline Riley will soon be leaving the Bay Area with her family, but will still be close to the light of her life, her four-year-old granddaughter. "She comes to have breakfast with us and spends a couple of hours with us in the afternoon," said Joe Riley. "They have a special game they play called wiggleworm."
"There are times when I'm not remembering anything and other times when I remember real good," Adeline Riley said. "It's very frustrating. I just try to remember more."
Despite knowing what's happening to his wife, Joe Riley has not given up trying to help her. "She'll sit down and try to tell me something and she can't get it out. She just gets so frustrated. You can see it on her face, that she's trying extra hard," he said. "I'll say, 'Wait a minute, let's just simmer down and talk about it, and we'll get it."
"It is sad to diagnose dementia, and to witness a patient's deterioration," said Kerchner as he reflected on his practice, "but I find reward in helping patients and families to discover what is happening, to get accurate information, and to use this knowledge to find a path forward."