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,"
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
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."