Alzheimer's Disease

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Alzheimers Disease Unraveling the Mystery and Home Safety

Table of Contents
1. Alzheimers Disease Unraveling the Mystery Pages 1-80
2. Home Safety for People with Alzheimers Disease Pages 1-40

ALZHEIMERS
DISEASE
Unraveling the Mystery
National Institute on Aging

National Institutes of Health
ALZHEIMERS
DISEASE
Unraveling the Mystery
Preface
O
ver the past few lead agency for AD research at nizations around the world, and
decades, Alzheimers the National Institutes of Health many private-sector research,
disease (AD) has (NIH). NIA launched its AD education, and advocacy groups,
emerged from program in 1978, and since the study of AD is moving
obscurity. Once considered a then, the study of this disease ahead rapidly. This book explains
rare disorder, it is now seen as has become one of NIAs top what AD is, describes the main
a major public health problem priorities. Several other NIH in- areas in which researchers are
that has a severe impact on mil- stitutes also conduct and sponsor working, and highlights new
lions of older Americans and studies on AD. approaches for helping families
their families. The National Thanks to the work of NIH and friends care for people
Institute on Aging (NIA) is the institutes, other research orga- with AD.
TO GET THE MOST OUT OF THIS BOOK
Learn the Basics of the Healthy Brain Discover What Happens

to the Brain in AD
The parts of the brain (pages 10-13)
How neurons work (pages 14-16) The hallmarks of AD (pages 21-26)
The changing brain in healthy aging The changing brain in AD (pages 27-33)
(pages 17-19)
Explore Cutting-Edge AD Research Learn about Caregiver Support
Looking for causes (pages 36-47) Who are AD caregivers? (page 63)
Diagnosing AD (pages 48-53) Reducing the personal costs of caregiving
Searching for treatments (pages 54-61) (pages 64-67)
Taking care of mom or dad from a distance
(page 68)
TO LEARN EVEN MORE

Visit NIAs Alzheimers Disease Education and Referral Center website at www.nia.nih.gov/Alzheimers.
There, you will nd resources to accompany this book, such as downloadable versions of the illustrations
and an animation that shows what happens to the changing brain in AD. And while you are there,
explore the ADEAR Centers many other offerings. These include free publications about AD and AD
caregiving, clinical trials information, a list of NIA-funded Alzheimers Disease Centers, and NIAs
searchable AD Library database of thousands of materials about AD.
2 ALZ HEIMERS DISEASE Unraveling the Mystery

Table of Contents
4 INTRODUCTION p a r t 3
4 AD: A Growing National Problem 34 AD RESEARCH: BETTER QUESTIONS,
5 About This Book NEW ANSWERS
36 Looking for the Causes of AD
36 Genetic Factors at Work in AD
40 Other Factors at Work in AD
p a r t 1
8 THE BASICS OF THE HEALTHY BRAIN 48 New Techniques Help in Diagnosing AD
50 Exciting New Developments in
10 Inside the Human Brain AD Diagnosis
10 The Main Players
12 Other Crucial Parts 54 The Search for New Treatments
12 The Brain in Action 55 Helping People with AD Maintain Their
Mental Functioning
14 Neurons and Their Jobs 56 Managing Symptoms
14 Communication 57 Slowing, Delaying, or Preventing AD
16 Metabolism
16 Repair
17 The Changing Brain in Healthy Aging
p a r t 4
62 IMPROVING SUPPORT FOR
FAMILIES AND OTHER CAREGIVERS
p a r t 2 64 Research Findings Benet Caregivers
20 WHAT HAPPENS TO THE BRAIN IN AD 66 Early-Stage AD Support Groups:
A Vital Source of Help
21 The Hallmarks of AD
21 Amyloid Plaques
69 CONCLUSION
25 Neurobrillary Tangles
26 Loss of Connection Between
70 GLOSSARY
Cells and Cell Death
27 The Changing Brain in AD 74 FOR MORE INFORMATION
27 Preclinical AD 74 Information and Support Resources
28 Very Early Signs and Symptoms 75 Caregiving Support and Services
30 Mild AD 76 Research and Clinical Trials
31 Moderate AD 76 Recommended Reading
31 Severe AD
A L Z HE I M ERS D I S EA SE Unraveling the Mystery 3

Introduction
Never have I loved my husband of 41 years more than I do today....Though he may not know Im his wife,
he does know that my presence means his favorite foods and drinks are near at hand....I wonder why I can
sit daily by his side as I play tapes, relate bits and pieces of news, hold his hand, tell him I love him. Yet I am
content when I am with him, though I grieve for the loss of his smile, the sound of my name on his lips.
T
his excerpt from Lessons Learned: Shared studying AD so that they can nd ways to manage,
Experiences in Coping, by participants treat, and one day prevent this terrible disease.
of the Duke University Alzheimer
Support Groups, gives a glimpse into AD: A GROWING NATIONAL PROBLEM
what a person with Alzheimers disease (AD) and For many older adults and their families, AD
a family caregiver might experience as the disease stands in the way of the Golden Years. It also
progresses. The gradual slipping away of mind presents a major problem for our health care system
and memory is frightening and frustrating, both and society as a whole. AD is the most common
for the person with the disease and for family and cause of dementia among older people. Recent
friends, and can elicit strong feelings of love, grief, estimates of how many people in the United States
anger, and exhaustion. currently have AD differ, with numbers ranging
AD is an irreversible, progressive brain disease from 2.4 million to 4.5 million, depending on how
that slowly destroys memory and thinking skills, AD is measured. But scientists agree that unless
eventually even the ability to carry out the simplest the disease can be effectively treated or prevented,
tasks. In most people with AD, symptoms rst the numbers will increase signicantly if current
appear after age 60. AD is caused by a disease that population trends continue.
affects the brain. In the absence of disease, the Our aging society makes AD an especially criti-
human brain often can function well into the cal issue. A 2005 Census Bureau report on aging
10th decade of life. in the United States notes that the population
Not so long ago, we were not able to do age 65 and older is expected to double in size to
much for people with AD. Today, that situation about 72 million people within the next 25 years.
is changing. Thousands of scientists, voluntary Moreover, the 85 and older age group is now the
organizations, and health care professionals are fastest growing segment of the population. This is
all the more important for a neurodegenerative
See the glossary on page 70 for

denitions of boldfaced terms.

disease like AD because the number of people begins many years, perhaps even decades,
with the disease doubles for every 5-year age before symptoms emerge. Discovering ways to
interval beyond age 65. identify AD in the earliest stages and halt or slow
AD not only affects the people with the disease, its progress will benet individuals, families, and
of course. The number of AD caregiversand the Nation as a whole.
their needscan be expected to rise rapidly as
the population ages and as the number of people ABOUT THIS BOOK
with AD grows. During their years of AD care- Thinking about AD leads to questions such as:
giving, spouses, relatives, and friends experience What causes it? What can be done to cure it or
great emotional, physical, and nancial challenges. prevent it? Will I get it? Scientists ask the same
As the disease runs its course and the abilities of types of questions, and this book describes their
people with AD steadily decline, family members search for answers. It is written for people with
face difcult, and often costly, decisions about the AD, their family members and friends, caregivers,
long-term care of their loved ones. and others interested in AD.
The growing number of people with AD and This book has four sections:
the costs associated with the disease also put a
Part 1 gives readers some basics about the
heavy economic burden on society. The national
healthy brain. Illustrations and text show what a
direct and indirect costs of caring for people with
healthy brain looks like and how it works.
AD are estimated to be more than $100 billion a
Part 2 focuses on what happens in the brain
year. A 2004 study provided an equally sobering
during AD.
picture of the impact of AD. It is estimated that
if current AD trends continue, total Federal
Medicare spending to treat beneciaries with the Visit the National Institute on Aging
disease will increase from $62 billion in 2000 to (NIA) Alzheimers Disease Education
$189 billion in 2015. and Referral (ADEAR) Center website
For these reasons, AD is an urgent research at www.nia.nih.gov/Alzheimers/ADvideo
priority. We need to nd ways to manage and treat to view an animation that helps this part
AD because of its broad-reaching and devastating of the book come alive.
impact. We now know that the disease process
A L ZHE I M ER S D I SE A SE Unraveling the Mystery 5

Introduction
Part 3 talks about current research and the A book like this is possible only because of
advances that are bringing us closer to ways of the major progress that scientists throughout the
managing and eventually defeating AD. world have made. Not long ago, we knew very
Part 4 focuses on issues important to AD little about AD other than some facts about its
caregivers and families, including current research major characteristics. Today, we are beginning
that is nding ways to improve caregiver support. to understand more about what AD is and who
gets it, how and why it develops, and what course
The end of the book includes a list of publica-
it follows. We are learning about the complex
tions and resources that people with AD, family
interface between AD and normal age-related
members, and caregivers may nd useful as they
changes in the brain. We also are getting much
live day to day with the disease.
Then and Now: The Fast Pace of Developments in AD Research
A s shown in this timeline, we have learned a lot since Dr. Alzheimer presented the case of his patient, Auguste D.
The pace of research continues to accelerate as new ndings open more and more doors to discovery.
19O6 196Os
Dr. Alois Alzheimer, a German neurologist and Scientists discover a link between dementia and
psychiatrist, describes the case of a 51-year-old the number of plaques present in the brain. AD is
woman, Auguste D., who had been admitted to recognized as a distinct disease, not a normal part
a hospital 5 years earlier with a cluster of unusual of aging.
symptoms, including problems with comprehension
and memory, an inability to speak, disorientation, 197Os
behavioral problems, and hallucinations. After her Scientists nd that levels of acetylcholine, a
death, Dr. Alzheimer examined her brain tissue and neurotransmitter important in memory formation,
described two of the hallmarks of ADnumerous falls sharply in people with AD. This discovery is
globs of sticky proteins in the spaces between one of the rst to link AD with biochemical changes
neurons (beta-amyloid plaques) and a tangled in the brain.
bundle of brils within neurons (neurobrillary Alzheimers disease becomes a common term as
tangles). recognition of AD as a major public health problem
grows.
191Os 194Os NIA is established.
Belief persists that senile dementia is a normal part
of aging. 198Os
Diagnostic criteria for AD are established.
195Os Genetic links to early-onset AD begin to surface.
Scientists study the biological structure of plaques Congress mandates NIA as lead Federal agency
and tangles. for AD research.
6 ALZ HE I ME R S D IS EASE Unraveling the Mystery

better at diagnosing it early and accurately. Most function in healthy older people and identied
important, we now have some promising leads on ways we might lessen normal age-related declines
possible treatments. Studies also are beginning in mental function. Most importantly, this accu-
to focus on preventive strategies by examining mulated research has increased our appreciation
lifestyle factors that might inuence a persons for just how complex AD is. It is now clear that
risk of developing AD. many scientic and clinical disciplines need to
Since the 1970s, research supported by work together to untangle the genetic, biological,
NIA and other organizations has deepened and environmental factors that, over many
our understanding of this devastating disease. years, set a person on a course that ultimately
It also has expanded our knowledge of brain results in AD.
Scientists start to unravel the biological pathways 2OOOs

that lead to the development of beta-amyloid The FDA approves other AD drugs, including
plaques in the brain. rivastigmine (Exelon), galantamine (Razadyne),
Abnormal tau protein in tangles is identied. donepezil (Aricept), and memantine (Namenda)
to treat symptoms of AD.
199Os Early work on an AD vaccine begins.
The U.S. Food and Drug Administration (FDA) Many new AD clinical trials, initiatives, and
approves tacrine (Cognex), the rst drug used to studies are launched, looking at a broad array of
treat AD. This drug has since been replaced by translational, treatment, and prevention issues.
other medications. New transgenic mouse models, including one
Genetic mutations linked to early-onset and that develops both plaques and tangles, are
late-onset AD are discovered. developed.
The first transgenic mouse model of AD is Pittsburgh Compound B (PiB) is developed, allowing
created. researchers to see beta-amyloid plaques in the

Additional diagnostic criteria are developed for AD. brains of living people.
Characteristics of mild cognitive impairment are The growing sophistication of neuroimaging
described and dened. techniques, genetics, memory and cognitive

NIA launches the Alzheimers Disease Education tests, structured interviews, and other technologies
and Referral Center, AD Cooperative Study, and improve our ability to identify people at high
other initiatives to conduct and support AD treatment risk of AD.
and prevention clinical trials.

PART
1
Basics
The
of the
Healthy
Brain
T
o understand AD, it is important to
The Brains
know a bit about the brain. This part of Vital Statistics
Unraveling the Mystery gives an inside
view of the normal brain, how it works,
AD U LT W E I GH T
and what happens during aging.
about 3 pounds
The brain is a remarkable organ. Seemingly
without effort, it allows us to carry out every AD U LT S I Z E
element of our daily lives. It manages many body a medium cauliower
functions, such as breathing, blood circulation, NU M BE R O F N E U R O NS
and digestion, without our knowledge or about 100,000,000,000 (100 billion)
direction. It also directs all the functions we carry
NU M BE R O F S Y NA P SE S
out consciously. We can speak, hear, see, move,
remember, feel emotions, and make decisions (the gaps between neurons)
because of the complicated mix of chemical and about 100,000,000,000,000 (100 trillion)
electrical processes that take place in our brains. NU M BE R O F C AP I L L A R I E S
The brain is made of nerve cells and several (tiny blood vessels)
other cell types. Nerve cells also are called about 400,000,000,000 (400 billion)
neurons. The neurons of all animals function in
basically the same way, even though animals can
be very different from each other. Neurons survive the brain is only about 2 percent of the bodys
and function with the help and support of glial weight, it receives 20 percent of the bodys blood
cells, the other main type of cell in the brain. Glial supply. Billions of tiny blood vessels, or capillaries,
cells hold neurons in place, provide them with carry oxygen, glucose (the brains principal source
nutrients, rid the brain of damaged cells and other of energy), nutrients, and hormones to brain cells
cellular debris, and provide insulation to neurons so they can do their work. Capillaries also carry
in the brain and spinal cord. In fact, the brain away waste products.
has many more glial cells than neuronssome
scientists estimate even 10 times as many.
Another essential feature of the brain is its
enormous network of blood vessels. Even though

P A R T 1 The Basics of the Healthy Brain
Inside the
Human Brain
T
he brain has many parts, each of which The occipital lobe, which is at the back of the
is responsible for particular functions. brain, is concerned with vision.
The following section describes a few The temporal lobe, which runs along the
key structures and what they do. side of the brain under the frontal and pari-
etal lobes, deals with the senses of smell, taste,
THE MAIN PLAYERS and sound, and the formation and storage of
Two cerebral hemispheres account for 85 per- memories.
cent of the brains weight. The billions of neurons
The cerebellum sits above the brain stem and
in the two hemispheres are connected by thick
beneath the occipital lobe. It takes up a little more
bundles of nerve cell bers called the corpus cal-
than 10 percent of the brain. This part of the
losum. Scientists now think that the two hemi-
brain plays roles in balance and coordination. The
spheres differ not so much in what they do (the
cerebellum has two hemispheres, which receive
logical versus artistic notion), but in how they
information from the eyes, ears, and muscles and
process information. The left hemisphere appears
to focus on details (such as recognizing a particular
face in a crowd). The right hemisphere focuses on
Front View of the Brain
broad background (such as understanding the rela-
tive position of objects in a space). The cerebral
hemispheres have an outer layer called the cerebral
cortex. This is where the brain processes sensory
information received from the outside world,
controls voluntary movement, and regulates
cognitive functions, such as thinking, learning,
speaking, remembering, and making decisions.
The hemispheres have four lobes, each of which
has different roles:
The frontal lobe, which is in the front of the
brain, controls executive function activities
like thinking, organizing, planning, and
problem solving, as well as memory, attention,
and movement.
The parietal lobe, which sits behind the
frontal lobe, deals with the perception and
integration of stimuli from the senses.

Side View of the Brain
This illustration shows a three-dimensional side
view of one of two cerebral hemispheres of the brain.
To help visualize this, imagine looking at the cut side
of an avocado sliced long ways in half, with the
pit still in the fruit. In this illustration, the pit is
several key structures that lie deep within the brain
(the hypothalamus, amygdala, and hippocampus)
and the brain stem.
joints about the bodys movements and position. The hippocampus, which is buried in the
Once the cerebellum processes that information, it temporal lobe, is important for learning and
sends instructions to the body through the rest of short-term memory. This part of the brain is
the brain and spinal cord. The cerebellums work thought to be the site where short-term
allows us to move smoothly, maintain our balance, memories are converted into long-term
and turn around without even thinking about it. It memories for storage in other brain areas.
also is involved with motor learning and remem- The thalamus, located at the top of the brain
bering how to do things like drive a car or write stem, receives sensory and limbic information,
your name. processes it, and then sends it to the cerebral
The brain stem sits at the base of the brain. It cortex.
connects the spinal cord with the rest of the brain. The hypothalamus, a structure under
Even though it is the smallest of the three main the thalamus, monitors activities such as body
players, its functions are crucial to survival. The temperature and food intake. It issues instructions
brain stem controls the functions that happen to correct any imbalances. The hypothalamus also
automatically to keep us aliveour heart rate, controls the bodys internal clock.
blood pressure, and breathing. It also relays
information between the brain and the spinal THE BRAIN IN ACTION
cord, which then sends out messages to the Sophisticated brain-imaging techniques allow
muscles, skin, and other organs. Sleep and scientists to monitor brain function in living
dreaming are also controlled by the brain stem. people and to see how various parts of the brain
are used for different kinds of tasks. This is
OTHER CRUCIAL PARTS opening up worlds of knowledge about brain
Several other essential parts of the brain lie deep function and how it changes with age or disease.
inside the cerebral hemispheres in a network of One of these imaging techniques is called
structures called the limbic system. The limbic positron emission tomography, or PET
system links the brain stem with the higher scanning. Some PET scans measure blood
reasoning elements of the cerebral cortex. It plays ow and glucose metabolism throughout the
a key role in developing and carrying out instinc- brain. (For more on metabolism, see page 16.)
tive behaviors and emotions and also is impor- During a PET scan, a small amount of a radioac-
tant in perceiving smells and linking them with tive substance is attached to a compound, such
memory, emotion, and instinctive behaviors. The as glucose, and injected into the bloodstream.
limbic system includes: This tracer substance eventually goes to the brain.
When nerve cells in a region of the brain become
The amygdala, an almond-shaped structure
active, blood ow and glucose metabolism in
involved in processing and remembering strong
that region increase. When colored to reect
emotions such as fear. It is located in the temporal
metabolic activity, increases usually look red
lobe just in front of the hippocampus.
and yellow. Shades of blue and black indicate
decreased or no activity within a brain region.

In essence, a PET scan produces a map of serotonin. (To learn about exciting developments
the active brain. using one new tracer, see PiB and PET on page
Scientists can use PET scans to see what hap- 28.) Some of these neurotransmitters are changed
pens in the brain when a person is engaged in with age, disease, and drug therapies.
a physical or mental activity, at rest, or even
while sleeping or dreaming. Certain tracers can
track the activity of brain chemicals, for example
neurotransmitters such as dopamine and

Neurons
and Their
Jobs
T
he human brain is made up of billions to survive and stay healthy. These processes are
of neurons. Each has a cell body, communication, metabolism, and repair.
an axon, and many dendrites. The
cell body contains a nucleus, which COMMUNICATION
controls much of the cells activities. The cell Imagine the many miles of ber-optic cables that
body also contains other structures, called run under our streets. Day and night, millions of
organelles, that perform specic tasks. televised and telephonic messages ash at incredible
The axon, which is much narrower than the speeds, letting people strike deals, give instructions,
width of a human hair, extends out from the cell share a laugh, or learn some news. Miniaturize it,
body. Axons transmit messages from neuron to multiply it many-fold, make it much more complex,
neuron. Sometimes, signal transmissionslike and you have the brain. Neurons are the great com-
those from head to toehave to travel over very municators, always in touch with their neighbors.
long distances. Axons are covered with an insulat- Neurons communicate with each other through
ing layer called myelin (also called white matter their axons and dendrites. When a dendrite re-
because of its whitish color). Myelin, which is ceives an incoming signal (electrical or chemical),
made by a particular kind of glial cell, increases an action potential, or nerve impulse, can be
the speed of nerve signal transmissions through generated in the cell body. The action potential
the brain. travels to the end of the axon and once there, the
Dendrites also branch out from the cell body. passage of either electrical current or, more
They receive messages from the axons of other typically, the release of chemical messengers,
neurons. Each neuron is connected to thousands called neurotransmitters, can be triggered. The
of other nerve cells through its axon and dendrites. neurotransmitters are released from the axon
Groups of neurons in the brain have special terminal and move across a tiny gap, or synapse,
jobs. For example, some are involved with to specic receptor sites on the receiving, or post-
thinking, learning, and memory. Others are synaptic, end of dendrites of nearby neurons. A
responsible for receiving information from the typical neuron has thousands of synaptic connec-
sensory organs (such as the eyes and ears) or the tions, mostly on its many dendrites, with other
skin. Still others communicate with muscles, neurons. Cell bodies also have receptor sites for
stimulating them into action. neurotransmitters.
Several processes all have to work smoothly
together for neurons, and the whole organism,

Neurons in the Brain
Once the post-synaptic receptors are activated, METABOLISM

they open channels through the cell membrane All cells break down chemicals and nutrients to
into the receiving nerve cells interior or start other generate energy and form building blocks that
processes that determine what the receiving nerve make new cellular molecules such as proteins.
cell will do. Some neurotransmitters inhibit nerve This process is called metabolism. To maintain
cell function (that is, they make it less likely that metabolism, the brain needs plenty of blood
the nerve cell will send an electrical signal down constantly circulating through its billions of
its axon). Other neurotransmitters stimulate nerve capillaries to supply neurons and other brain
cells, priming the receiving cell to become active cells with oxygen and glucose. Without oxygen
or send an electrical signal down the axon to more and glucose, neurons will quickly die.
neurons in the pathway. A neuron receives signals
from many other neurons simultaneously, and the REPAIR
sum of a neurons neurotransmitter inputs at any Nerve cells are formed during fetal life and for a
one instant will determine whether it sends a sig- short time after birth. Unlike most cells, which
nal down its axon to activate or inhibit the action have a fairly short lifespan, neurons in the brain
of other neighboring neurons. live a long time. These cells can live for up to 100
During any one moment, millions of these sig- years or longer. To stay healthy, living neurons
nals are speeding through pathways in the brain, must constantly maintain and repair themselves.
allowing the brain to receive and process informa- In an adult, when neurons die because of disease
tion, make adjustments, and send out instructions or injury, they are not usually replaced. Research,
to various parts of the body. however, shows that in a few brain regions, new
neurons can be generated, even in the old brain.
The
Changing Brain
in
HealthyAging
I
n the past several decades, investigators have In some people, structures called plaques and
learned much about what happens in the tangles develop outside of and inside neurons,
brain when people have a neurodegenerative respectively, although in much smaller amounts
disease such as Parkinsons disease, AD, or than in AD (see The Hallmarks of AD on page 21
other dementias. Their ndings also have revealed for more information on plaques and tangles).
much about what happens during healthy aging. Damage by free radicals increases (free radicals
Researchers are investigating a number of changes are a kind of molecule that reacts easily with other
related to healthy aging in hopes of learning more molecules; see The Aging Process on page 42 for
about this process so they can ll gaps in our more on these molecules).
knowledge about the early stages of AD. Inammation increases (inammation is the
As a person gets older, changes occur in all parts complex process that occurs when the body
of the body, including the brain: responds to an injury, disease, or abnormal
situation).
Certain parts of the brain shrink, especially
the prefrontal cortex (an area at the front of the What effects does aging have on mental
frontal lobe) and the hippocampus. Both areas function in healthy older people? Some people
are important to learning, memory, planning, and may notice a modest decline in their ability to
other complex mental activities. learn new things and retrieve information, such
Changes in neurons and neurotransmitters as remembering names. They may perform worse
affect communication between neurons. In certain on complex tasks of attention, learning, and
brain regions, communication between neurons memory than would a younger person. However,
can be reduced because white matter (myelin- if given enough time to perform the task, the
covered axons) is degraded or lost. scores of healthy people in their 70s and 80s are
Changes in the brains blood vessels occur. often similar to those of young adults. In fact, as
Blood ow can be reduced because arteries narrow they age, adults often improve in other cognitive
and less growth of new capillaries occurs. areas, such as vocabulary and other forms of verbal
knowledge.
It also appears that additional brain regions can
be activated in older adults during cognitive tasks,

such as taking a memory test. Researchers do not and unique mix of genetics, environment, and life
fully understand why this happens, but one idea is experiences, the balance may tip in favor of a dis-
that the brain engages mechanisms to compensate ease process that will ultimately lead to dementia.
for difculties that certain regions may be having. For another person, with a different reserve and
For example, the brain may recruit alternate brain a different mix of genetics, environment, and life
networks in order to perform a task. These nd- experiences, the balance may result in no apparent
ings have led many scientists to believe that major decline in cognitive function with age.
declines in mental abilities are not inevitable as Scientists are increasingly interested in the
people age. Growing evidence of the adaptive inuence of all these factors on brain health, and
(what scientists call plastic) capabilities of the studies are revealing some clues about actions
older brain provide hope that people may be able people can take that may help preserve healthy
to do things to sustain good brain function as brain aging. Fortunately, these actions also benet
they age. A variety of interacting factors, such as a persons overall health. They include:
lifestyle, overall health, environment, and genetics
Controlling risk factors for chronic disease,
also may play a role.
such as heart disease and diabetes (for example,
Another question that scientists are asking
keeping blood cholesterol and blood pressure at
is why some people remain cognitively healthy
healthy levels and maintaining a healthy weight)
as they get older while others develop cognitive
Enjoying regular exercise and physical activity
impairment or dementia. The concept of
Eating a healthy diet that includes plenty of
cognitive reserve may provide some insights.
vegetables and fruits
Cognitive reserve refers to the brains ability to
Engaging in intellectually stimulating activities
operate effectively even when some function is
and maintaining close social ties with family,
disrupted. It also refers to the amount of damage
friends, and community
that the brain can sustain before changes in
cognition are evident. People vary in the cognitive Vascular Disease on page 43 and Lifestyle
reserve they have, and this variability may be Factors on page 45 provide more information
because of differences in genetics, education, about these issues and how they may inuence the
occupation, lifestyle, leisure activities, or other life risk of developing AD.
experiences. These factors could provide a certain
amount of tolerance and ability to adapt to change
and damage that occurs during aging. At some
point, depending on a persons cognitive reserve

ACTIVE Study May Provide Clues to Help Older Adults Stay Mentally Sharp
T he phrase use it or lose it may make you think

of your muscles, but scientists who study brain
health in older people have found that it may apply
After 5 years, people in each group performed
better on tests in their respective areas of training
than did people in the control group. The reasoning
to cognitive skills as well. In 2006, scientists funded and processing-speed groups who received booster
by NIA and the National Institute of Nursing Research training had the greatest benet.
completed a study of cognitive training in older adults. The researchers also looked at the trainings effects
This study, the Advanced Cognitive Training for Inde- on participants everyday lives. After 5 years, all three
pendent and Vital Elderly (ACTIVE) study, was the rst groups who recieved training reported less difculty
randomized controlled trial to demonstrate long-lasting, than the control group in tasks such as preparing
positive effects of brief cognitive training in older adults. meals, managing money, and doing housework.
The ACTIVE study included 2,802 healthy adults However, these results were statistically signicant for
age 65 and older who were living independently. only the group that had the reasoning training.
Participants were randomly assigned to four groups. As they get older, many people worry about their
Three groups took part in up to 10 computer-based mental skills getting rusty. The ACTIVE study offers
training sessions that targeted a specic cognitive hope that cognitive training may be useful because it
abilitymemory, reasoning, and speed of processing showed that relatively brief and targeted cognitive
(in other words, how fast participants could respond exercises can produce lasting improvements in the
to prompts on a computer screen). The fourth group skills taught. Next steps for researchers are to deter-
(the control group) received no cognitive training. Sixty mine ways to generalize the training benets beyond
percent of those who completed the initial training also the specic skills taught in ACTIVE and to nd out
took part in 75-minute booster sessions 11 months whether cognitive training programs could prevent,
later. These sessions were designed to maintain delay, or diminish the effects of AD.
improvements gained from the initial training.
The investigators tested the participants at the
beginning of the study, after the initial training and booster
sessions, and once a year for 5 more years. They found
that the improvements from the training roughly counter-
acted the degree of decline in cognitive performance
that would be expected over a 7- to 14-year period
among older people without dementia:
Immediately after the initial training, 87 percent
of the processing-speed group, 74 percent of
the reasoning group, and 26 percent of
the memory group showed improvement
in the skills taught.

PART
2
What Happens
Brain
to the
AD
in
The
Hallmarks of AD
A
lzheimers disease disrupts critical metabolic AMYLOID PLAQUES
processes that keep neurons healthy. These Amyloid plaques are found in the spaces between
disruptions cause nerve cells in the brain the brains nerve cells. They were rst described
to stop working, lose connections with by Dr. Alois Alzheimer in 1906. Plaques consist
other nerve cells, and nally die. The destruction of largely insoluble deposits of an apparently toxic
and death of nerve cells causes the memory failure, protein peptide, or fragment, called beta-amyloid.
personality changes, problems in carrying out We now know that some people develop
daily activities, and other features of the disease. some plaques in their brain tissue as they age.
The brains of people with AD have an abundance However, the AD brain has many more plaques
of two abnormal structuresamyloid plaques in particular brain regions. We still do not know
and neurobrillary tanglesthat are made of whether amyloid plaques themselves cause AD or
misfolded proteins (see Protein Misfolding on whether they are a by-product of the AD process.
page 41 for more information). This is especially We do know that genetic mutations can increase
true in certain regions of the brain that are production of beta-amyloid and can cause rare,
important in memory. inherited forms of AD (see Genes and Early-
The third main feature of AD is the loss of Onset Alzheimers Disease on page 38 for
connections between cells. This leads to dimin- more on inherited AD).
ished cell function and cell death.
To view a video showing what happens to

the brain in AD, go to www.nia.nih.gov/
Alzheimers/ADvideo.

P A R T 2 What Happens to the Brain in AD
From APP to Beta-Amyloid Plaques
A myloid precursor protein (APP), the starting

point for amyloid plaques, is one of many proteins
associated with the cell membrane, the barrier that
the APP molecule at one
end of the beta-amyloid
peptide, releasing sAPP
encloses the cell. As it is being made inside the cell, from the cell (Figure 3).
APP becomes embedded in the membrane, like a tooth- Gamma-secretase then
pick stuck through the skin of an orange (Figure 1). cuts the resulting APP
In a number of cell com- fragment, still tethered in
Figure 3
partments, including the the neurons membrane,
outermost cell membrane, at the other end of the
specic enzymes snip, or beta-amyloid peptide.
cleave, APP into discrete Following the cleavages
fragments. In 1999 and at each end, the beta-
2000, scientists identied amyloid peptide is
Figure 1
the enzymes responsible released into the space
for cleaving APP. These enzymes are called alpha- Figure 4 outside the neuron and
secretase, beta-secretase, and gamma-secretase. begins to stick to other
In a major breakthrough, scientists then discovered beta-amyloid peptides (Figure 4). These small,
that, depending on which enzyme is involved and soluble aggregates of two, three, four, or even
the segment of APP where the cleaving occurs, APP up to a dozen beta-amyloid peptides are called
processing can follow one of two pathways that oligomers. Specic sizes of oligomers may
have very different consequences for the cell. be responsible for reacting with receptors on
In the benign pathway, alpha-secretase cleaves the neighboring cells and synapses, affecting their
APP molecule within the portion that has the potential to ability to function.
become beta-amyloid. This eliminates the production of It is likely that some oligomers are cleared from
the beta-amyloid peptide and the potential for plaque the brain. Those that cannot be cleared clump
buildup. The cleavage releases from the neuron a frag- together with more beta-amyloid peptides. As the
ment called sAPP, which has benecial properties, process continues, oligomers grow larger, becoming
such as promoting neuronal growth and survival. The entities called protobrils and brils. Eventually, other
remaining APP fragment, still tethered in the neurons proteins and cellular material are added, and these
membrane, is then cleaved by gamma-secretase at increasingly insoluble entities combine to become the
the end of the beta-amyloid segment. The smaller of well-known plaques that are characteristic of AD.
the resulting fragments also is released into the space For many years, scientists thought that plaques
outside the neuron, while might cause all of the damage to neurons that is seen
the larger fragment remains in AD. However, that concept has evolved greatly
within the neuron and in the past few years. Many scientists now think that
interacts with factors in the oligomers may be a major culprit. Many scientists
nucleus (Figure 2). also think that plaques actually may be a late-stage
In the harmful pathway, attempt by the brain to get this harmful beta-amyloid
beta-secretase rst cleaves away from neurons.
Figure 2

From APP to Beta-Amyloid Plaque

Healthy and Diseased Neurons

Inside a
Healthy Neuron NEUROFIBRILLARY TANGLES
The second hallmark of AD, also described by
Dr. Alzheimer, is neurobrillary tangles. Tangles
are abnormal collections of twisted protein
threads found inside nerve cells. The chief
component of tangles is a protein called tau.
Healthy neurons are internally supported
in part by structures called microtubules,
which help transport nutrients and other
cellular components, such as neurotransmitter-
containing vesicles, from the cell body
down the axon.
Tau, which usually has a certain number of
phosphate molecules attached to it, binds to
microtubules and appears to stabilize them. In
AD, an abnormally large number of additional
phosphate molecules attach to tau. As a result
of this hyperphosphorylation, tau disengages
from the microtubules and begins to come
together with other tau threads. These tau
Inside a Diseased Neuron
threads form structures called paired helical
laments, which can become enmeshed
with one another, forming tangles
within the cell. The microtubules can
disintegrate in the process, collaps-
ing the neurons internal transport
network. This collapse damages
the ability of neurons to com-
municate with each other.
Formation of Tau Tangles

LOSS OF CONNECTION BETWEEN The AD process not only inhibits communi-

CELLS AND CELL DEATH cation between neurons but can also damage
The third major feature of AD is the gradual neurons to the point that they cannot function
loss of connections between neurons. Neurons properly and eventually die. As neurons die
live to communicate with each other, and this throughout the brain, affected regions begin to
vital function takes place at the synapse. Since shrink in a process called brain atrophy. By the
the 1980s, new knowledge about plaques and nal stage of AD, damage is widespread, and
tangles has provided important insights into brain tissue has shrunk signicantly.
their possible damage to synapses and on the
development of AD.
Loss of Connection
Between Cells
This illustration shows

the damage caused by AD:
plaques, tangles, and the
loss of connection between
neurons.
26 A L ZH EIMER S D ISE AS E Unraveling the Mystery

The
Changing Brain
in
AD
N
o one knows exactly what starts severity of cognitive problems at diagnosis.
the AD process or why some of the Although the course of the disease is not the same
normal changes associated with in every person with AD, symptoms seem to
aging become so much more extreme develop over the same general stages.
and destructive in people with the disease. We
know a lot, however, about what happens in the PRECLINICAL AD
brain once AD takes hold and about the physical AD begins deep in the brain, in the entorhinal
and mental changes that occur over time. The cortex, a brain region that is near the hippocampus
time from diagnosis to death variesas little as and has direct connections to it. Healthy neurons
3 or 4 years if the person is older than 80 when in this region begin to work less efciently, lose
diagnosed to as long as 10 or more years if the their ability to communicate, and ultimately die.
person is younger. Several other factors besides This process gradually spreads to the hippocam-
age also affect how long a person will live with pus, the brain region that plays a major role in
AD. These factors include the persons sex, learning and is involved in converting short-term
the presence of other health problems, and the memories to long-term memories. Affected
regions begin to atrophy. Ventricles, the uid-
lled spaces inside the brain, begin to enlarge
Preclinical AD
as the process continues.
Scientists believe that these brain changes
begin 10 to 20 years before any clinically
detectable signs or symptoms of forgetful-
ness appear. Thats why they are increasingly
interested in the very early stages of the disease
process. They hope to learn more about what
happens in the brain that sets a person on the
path to developing AD. By knowing more about
the early stages, they also hope to be able to

PiB and PET
I magine being able to see deep inside the brain tissue of

a living person. If you could do that, you could nd out
whether the AD process was happening many years before
symptoms were evident. This knowledge could have a
profound impact on improving early diagnosis, monitoring
disease progression, and tracking response to treatment.
Scientists have stepped closer to this possibility with the
development of a radiolabeled compound called Pittsburgh
Compound B (PiB). PiB binds to beta-amyloid plaques in the
brain and it can be imaged using PET scans. Initial studies
showed that people with AD take up more PiB in their brains
than do cognitively healthy older people. Since then, scien-
tists have found high levels of PiB in some cognitively healthy
people, suggesting that the damage from beta-amyloid may In this PET scan, the red and yellow colors
already be underway. The next step will be to follow these indicate that PiB uptake is higher in the brain
cognitively healthy people who have high PiB levels to see of the person with AD than in the cognitively
whether they do, in fact, develop AD over time. healthy person.
develop drugs or other treatments that will to a substance, the presence of a disease, or the
slow or stop the disease process before signicant progression over time of a disease. For example,
impairment occurs (see The Search for New high blood cholesterol is a biomarker for risk of
Treatments on page 54 for more information). heart disease. Such tools are critical to helping
scientists detect and understand the very early
VERY EARLY SIGNS AND SYMPTOMS signs and symptoms of AD.
At some point, the damage occurring in the brain
begins to show itself in very early clinical signs and Mild Cognitive Impairment
symptoms. Much research is being done to identify As some people grow older, they develop memory
these early changes, which may be useful in problems greater than those expected for their age.
predicting dementia or AD. An important part of But they do not experience the personality changes
this research effort is the development of increas- or other problems that are characteristic of AD.
ingly sophisticated neuroimaging techniques (see These people may have a condition called mild
Exciting New Developments in AD Diagnosis cognitive impairment (MCI). MCI has several
on page 50 for more on neuroimaging) and the use subtypes. The type most associated with memory
of biomarkers. Biomarkers are indicators, such as loss is called amnestic MCI. People with MCI are
changes in sensory abilities, or substances that ap- a critically important group for research because
pear in body uids, such as blood, cerebrospinal
uid, or urine. Biomarkers can indicate exposure
28 ALZ HEIM ERS DISE ASE Unraveling the Mystery

Charting the Course from Healthy Aging to AD
T his chart shows cur-

rent thinking about the
evolution from healthy aging
AD brain
Amnestic MCI:
memory problems;
Cognitive
decline
changes start other cognitive accelerates
to AD. Researchers view it as decades before functions OK; after AD
a series of events that occur symptoms brain compensates diagnosis
show for changes
in the brain over many years.
This gradual process, which
results from the combination of
biological, genetic, environ- Normal age-related
mental, and lifestyle factors, memory loss
eventually sets some people Total loss of
on a course to MCI and independent
possibly AD. Other people, function
whose genetic makeup may
be the same or different and
who experience a different Birth 40 60 80 Death
combination of factors over a Life Course
lifetime, continue on a course
Healthy Aging Amnestic MCI Clinically Diagnosed AD
of healthy cognitive aging.
a much higher percentage of them go on to de- AD (see Genetic Factors at Work in AD on

velop AD than do people without these memory page 36 for more information). And, they have
problems. About 8 of every 10 people who t found that different brain regions appear to
the denition of amnestic MCI go on to develop be activated during certain mental activities in
AD within 7 years. In contrast, 1 to 3 percent of cognitively healthy people and those with MCI.
people older than 65 who have normal cognition These changes appear to be related to the early
will develop AD in any one year. stages of cognitive impairment.
However, researchers are not yet able to say
denitively why some people with amnestic MCI Other Signs of Early AD Development
do not progress to AD, nor can they say who As scientists have sharpened their focus on the
will or will not go on to develop AD. This raises early stages of AD, they have begun to see hints of
pressing questions, such as: In cases when MCI other changes that may signal a developing disease
progresses to AD, what was happening in the brain process. For example, in the Religious Orders Study,
that made that transition possible? Can MCI be a large AD research effort that involves older nuns,
prevented or its progress to AD delayed? priests, and religious brothers, investigators have
Scientists also have found that genetic
factors may play a role in MCI, as they do in
A LZHEIMERS DISEA S E Unraveling the Mystery 29

explored whether changes in older adults ability to Mild to Moderate AD

move about and use their bodies might be a sign of
early AD. The researchers found that participants
with MCI had more movement difculties than the
cognitively healthy participants but less than those
with AD. Moreover, those with MCI who had lots
of trouble moving their legs and feet were more
than twice as likely to develop AD as those with
good lower body function.
It is not yet clear why people with MCI might
have these motor function problems, but the
scientists who conducted the study speculate that
they may be a sign that damage to blood vessels in
the brain or damage from AD is accumulating in
areas of the brain responsible for motor function.
If further research shows that some people with
MCI do have motor function problems in addi- MILD AD
tion to memory problems, the degree of difculty, As AD spreads through the brain, the number of
especially with walking, may help identify those at plaques and tangles grows, shrinkage progresses,
risk of progressing to AD. and more and more of the cerebral cortex is
Other scientists have focused on changes in affected. Memory loss continues and changes
sensory abilities as possible indicators of early in other cognitive abilities begin to emerge. The
cognitive problems. For example, in one study they clinical diagnosis of AD is usually made during
found associations between a decline in the ability this stage. Signs of mild AD can include:
to detect odors and cognitive problems or dementia.
Memory loss
These ndings are tentative, but they are
Confusion about the location of familiar places
promising because they suggest that, some day, it
(getting lost begins to occur)
may be possible to develop ways to improve early
Taking longer than before to accomplish
detection of MCI or AD. These tools also will help
normal daily tasks
scientists answer questions about causes and very
Trouble handling money and paying bills
early development of AD, track changes in brain
Poor judgment leading to bad decisions
and cognitive function over time, and ultimately
Loss of spontaneity and sense of initiative
track a persons response to treatment for AD.
Mood and personality changes, increased
anxiety and/or aggression
In mild AD, a person may seem to be healthy
but is actually having more and more trouble
making sense of the world around him or her. The
realization that something is wrong often comes
gradually to the person and his or her family.

Accepting these signs as something other than Hallucinations, delusions, suspiciousness or
normal and deciding to go for diagnostic tests can paranoia, irritability
be a big hurdle for people and families. Once this Loss of impulse control (shown through
hurdle is overcome, many families are relieved to undressing at inappropriate times or places
know what is causing the problems. They also can or vulgar language)
take comfort in the fact that despite a diagnosis An inability to carry out activities that involve
of MCI or early AD, a person can still make multiple steps in sequence, such as dressing,
meaningful contributions to his or her family making a pot of coffee, or setting the table
and to society for a time.
Behavior is the result of complex brain
processes, all of which take place in a fraction of
MODERATE AD
a second in the healthy brain. In AD, many of
By this stage, AD damage has spread to the areas
those processes are disturbed, and these disrupted
of the cerebral cortex that control language,
communications between neurons are the basis
reasoning, sensory processing, and conscious
for many distressing or inappropriate behaviors.
thought. Affected regions continue to shrink,
For example, a person may angrily refuse to take
ventricles enlarge, and signs and symptoms of the
a bath or get dressed because he does not under-
disease become more pronounced and widespread.
stand what his caregiver has asked him to do. If
Behavioral problems, such as wandering and
he does understand, he may not remember how
agitation, can occur. More intensive supervision
to do it. The anger can be a mask for his confu-
and care become necessary, which can be
sion and anxiety. Or, a person with AD may
difcult for many spouses and families. The
constantly follow her husband or caregiver and
symptoms of this stage can include:
fret when the person is out of sight. To a person
Increasing memory loss and confusion who cannot remember the past or anticipate the
Shortened attention span future, the world can be strange and frightening.
Inappropriate outbursts of anger Sticking close to a trusted and familiar caregiver
Problems recognizing friends and family members may be the only thing that makes sense and
Difculty with language and problems with provides security.
reading, writing, and working with numbers
Difculty organizing thoughts and thinking SEVERE AD
logically In the last stage of AD, plaques and tangles are
Inability to learn new things or to cope with widespread throughout the brain, most areas of
new or unexpected situations the brain have shrunk further, and ventricles have
Restlessness, agitation, anxiety, tearfulness, enlarged even more. People with AD cannot
wanderingespecially in the late afternoon or recognize family and loved ones or communicate
at night in any way. They are completely dependent on
Repetitive statements or movement, occasional others for care. Other symptoms can include:
muscle twitches
Weight loss
Seizures
Skin infections
Difculty swallowing

Groaning, moaning, or grunting AD Spreads Through the Brain

Increased sleeping
Lack of bladder and bowel control
Near the end, the person may be in bed much or
all of the time. The most frequent cause of death for
people with AD is aspiration pneumonia. This type
of pneumonia develops when a person is not able to
swallow properly and takes food or liquids into the
lungs instead of air.
Severe AD

The Buddy Program at Northwestern University
T he medical school curriculum

The Buddy Program at Northwestern University
demands that students spend
enormous amounts of time in the
classroom and clinic learning the
information and skills necessary
for a career in medicine. How-
ever, little or no time is set aside
for students to be with patients
outside the hospital or clinic
setting. As a result, it is hard for
medical students to get to know
the human side of the diseases
they are learning about.
The Buddy Program pairs medical students and people with AD
A program at Northwestern
to spend time withand learn fromeach other.
Universitys Cognitive Neurology
and Alzheimers Disease Center museums, exercising together, or hands-on way to learn about AD
is adding just that element to its even just sharing a coffee or a and related dementias, and it
medical education. The Buddy meal. The students also are able helps him or her understand the
Program, begun in 1998, to observe their buddies clinical daily realities and issues involved
matches rst-year medical evaluations at the Center. Other in caring for and supporting
students with people diagnosed medical schools have started people with AD and their
with AD or another form of similar programs. families. It also introduces them
dementia. About 10 to 15 The people with AD and to the career path of research
medical students participate their families are selected from and clinical practice in AD and
every year. They rst take a Northwesterns Alzheimers related dementias. For the person
3-hour orientation course on AD, Disease Center and other with AD, participation in the
family issues, and communication related programs at the university. program provides an opportunity
skills. Then, for the next year, they Families are contacted about for friendship and socializing
spend at least 4 hours a month participating, and the people and an outlet for sharing their
with a person with dementia in with AD are selected based on experiences with a sympathetic
addition to monthly meetings their ability to understand the listener.
with the program coordinators. nature of the program and their For many of the students, the
Together with the persons willingness to spend time every program is a transformative
caregiver and the programs month with the student buddy. experience. They become very
professional staff, students and The program has clear ben- close to their buddies and family
their buddies choose activities ets for both the medical student caregivers during their year
for their visits together. Activities and the person with AD. For the together, and continue the friend-
can include shopping, visiting medical student, it provides a ship even after the year is over.

AD RESEARCH :
PART
3
Better
Questions,
New
Answers
S
cientists have studied AD from many drug treatments. Findings from current research
angles. They have looked at populations are pointing scientists in promising directions for
to see how many cases of AD occur the future. They are also helping researchers to
every year and whether there might ask better questions about the issues that are still
be links between the disease and lifestyles or unclear.
genetic backgrounds. They also have conducted Part 3 of Unraveling the Mystery describes what
clinical studies with healthy older people and scientists are learning from their search for:
those at various stages of AD. They have done
The causes of AD
many studies with laboratory animals. They
New techniques to help in diagnosis
have begun to look at neuronal circuits and
New treatments
networks of cells to learn how AD pathology
develops and spreads. They even have examined Results from this research will bring us closer
individual nerve cells to see how beta-amyloid, to the day when we will be able to delay the onset
tau, and other molecules affect the ability of of, prevent, or cure the devastating disease that
cells to function normally. robs our older relatives and friends of their most
These studies have led to a fuller under- precious possessiontheir minds.
standing of many aspects of the disease, improved
diagnostic tests, new ways to manage behavioral
aspects of AD, and a growing number of possible

P A R T 3 AD Research: Better Questions, New Answers
Looking
for the
Causes of AD
O
ne of the most important parts of persons risk, such as the age at which the disease
unraveling the AD mystery is begins. Slow and careful detective work by scientists
nding out what causes the disease. has paid off in discoveries of genetic links to the two
What makes the disease process begin main types of AD.
in the rst place? What makes it worse over time? One type is the rare, early-onset Alzheimers
Why does the number of people with the disease disease. It usually affects people aged 30 to 60.
increase with age? Why does one person develop Some cases of early-onset disease are inherited and
AD while another remains healthy? are called familial AD (FAD). The other is
Some diseases, such as measles or pneumonia, late-onset Alzheimers disease. It is by far the
have clear-cut causes. They can be prevented with more common form and occurs in those 60 and
vaccines or cured with antibiotics. Others, such as older. Gaining insight into the genetic factors
diabetes or arthritis, develop when genetic, lifestyle, associated with both forms of AD is important
and environmental factors work together to start because identifying genes that either cause the
a disease process. The role that any or all of these disease or inuence a persons risk of developing it
factors play may be different for each individual. improves our ability to understand how and why
AD ts into the second group of diseases. the disease starts and progresses.
We do not yet fully understand what causes AD,
but we believe it develops because of a complex
series of events that take place in the brain over a
long period of time. Many studies are exploring
the factors involved in the cause and develop-
ment of AD.
GENETIC FACTORS AT WORK IN AD

Genetic studies of complex neurodegenera-
tive diseases such as AD focus on two main
issueswhether a gene might inuence
a persons overall risk of developing
a disease and whether a gene might
inuence some particular aspect of a
DNA, Chromosomes, and Genes: The Bodys Amazing Control Center
T he nucleus of almost
every human cell contains
an encrypted blueprint, along
with the means to decipher it. This
blueprint, accumulated over eons
of genetic trial and error, carries all
the instructions a cell needs to do
its job. The blueprint is made up of
DNA, which exists as two long,
intertwined, thread-like strands
called chromosomes. Each cell
has 46 chromosomes in 23 pairs.
The DNA in chromosomes is made
up of four chemicals, or bases,
strung together in various sequence
patterns. The DNA in nearly all
cells of an individual is identical.
Each chromosome contains
many thousands of segments,
called genes. People inherit two
copies of each gene from their
parents, except for genes on the
X and Y chromosomes, which are construction, operation, and repair. DNA that causes a disease is
chromosomes that, among other Even though all genes are present called a mutation. Mutations
functions, determine a persons sex. in most cells, the pattern in which also can change the activation
Each person normally has one pair they are activated varies from cell of a particular gene. Other more
of sex chromosomes (females are to cell, and gives each cell type common (or frequent) changes in
XX and males are XY). The its distinctive character. Even slight a genes sequence of bases do not
sequence of bases in a gene tells alterations in a gene can produce automatically cause disease, but
the cell how to make specic an abnormal protein, which, in turn, they can increase the chances that
proteins. Proteins in large part deter- may lead to cell malfunction and, a person will develop a particular
mine the different kinds of cells that eventually, to disease. disease. When this happens,
make up an organism and direct Any permanent change in the the changed gene is called a
almost every aspect of the cells sequence of bases in a genes genetic risk factor.

Genes and Early-Onset A Different Genetic Story in

Alzheimers Disease Late-Onset Alzheimers Disease
In the early days of AD genetics research, scientists While some scientists were studying the role of
realized that some cases, particularly of the rare chromosomes 21, 14, and 1 in early-onset AD,
early-onset AD, ran in families. This led them to others were looking elsewhere to see if they could
examine DNA samples from these families to see nd genetic clues for the late-onset form. By 1992,
whether they had some genetic trait in common. investigators had narrowed their search to a region
Chromosomes 21, 14, and 1 became the focus of of chromosome 19. They found a gene on
attention. The scientists found that some families chromosome 19 that they were able to link to
have a mutation in selected genes on these chromo- late-onset AD.
somes. On chromosome 21, the mutation causes an This gene, called APOE, produces a protein
abnormal amyloid precursor protein to be produced called apolipoprotein E. APOE comes in several
(see page 22 for more on APP). On chromosome forms, or alleles2, 3, and 4:
14, the mutation causes an abnormal protein called
The APOE 2 allele is relatively rare and may
presenilin 1 to be produced. On chromosome 1,
provide some protection against the disease. If AD
the mutation causes another abnormal protein to be
does occur in a person with this allele, it develops
produced. This protein, called presenilin 2, is very
later in life than in those with an APOE 4 allele.
similar to presenilin 1. Even if only one of these
APOE 3 is the most common allele. Research-
genes that are inherited from a parent contains a
ers think it plays a neutral role in AD.
mutation, the person will almost inevitably develop
APOE 4 occurs in about 40 percent of all
early-onset AD. This means that in these families,
people who develop late-onset AD and is present
children have about a 50-50 chance of developing
in about 25 to 30 percent of the population. Peo-
the disease if one of their parents has it.
ple with AD are more likely to have an APOE 4
Early-onset AD is very rare, and mutations in
allele than people who do not have AD. However,
these three genes do not play a role in the more
at least one-third of people with AD do not have
common late-onset AD. However, these ndings
an APOE 4 allele. Dozens of studies have con-
were crucial because they showed that genetics was
rmed that the APOE 4 allele increases the risk
indeed a factor in AD, and they helped to identify
of developing AD, but how that happens is not
some key cell pathways involved in the AD disease
yet understood. These studies also have helped to
process. They showed that mutations in APP can
explain some of the variation in the age at which
cause AD, highlighting the presumed key role of
AD develops, as people who inherit one or two
beta-amyloid in the disease. Mutations in pre-
APOE 4 alleles tend to develop AD at an earlier
senilin 1 and 2 also cause an increased amount of
age than those who do not. However, inheriting
the damaging beta-amyloid to be made in the brain.
an APOE 4 allele does not mean that a person
will denitely develop AD. Some people with one
or two APOE 4 alleles never get the disease, and
others who do develop AD do not have any APOE
4 alleles.

The Hunt for New AD Genes
F or some time, scientists have

suspected that, in addition
to APOE 4, as many as half a
In 2003, NIA launched the
Alzheimers Disease Genetics
Study to identify at least 1,000
dozen other risk-factor genes exist families with members who have
for late-onset AD, but they have late-onset AD as well as members
been unable to nd them. In 2007, who do not have the disease. All
scientists unveiled their discovery of of these family members provide
one new AD risk-factor gene. blood samples and other clinical
This AD risk-factor gene is data for the initiative. The material
called SORL1. It is involved in collected allows investigators to
recycling APP from the surface of create and maintain immortalized
cells, and its association with AD cell linescells that are continu-
was identied and conrmed in ously regenerated in the laboratory.
three separate studies. Research- These cell lines are crucial for the
ers found that when SORL1 is exhaustive DNA analysis studies
expressed at low levels or in a needed to identify risk-factor genes, be drawn from existing samples
variant form, harmful beta-amyloid each of which may have relatively of blood and tissue; other genetic
levels increase, perhaps by small effects on AD development. material will be collected from new
deecting APP away from its More than 4,000 new cell lines participants.
normal pathways and forcing it are now available for researchers New AD genetics discoveries
into cellular compartments that to study risk-factor genes for late- are possible largely because
generate beta-amyloid. onset AD. of close collaboration among
As AD genetics research has A new initiative, the Alzheimers scientists, participation of volunteer
intensied, it has become increas- Disease Genetics Consortium, families, new genetics tech-
ingly clear that scientists need was launched in 2007 to acceler- nologies, statistical and analytic
many different samples of genetic ate the application of genetics advances, and rapid data sharing.
material if they are to continue technologies to late-onset AD For example, the SORL1 studies
making progress in identifying new through collaborations among most involved 14 scientic institutions in
risk-factor genes. Genetic material of the leading researchers in AD North America, Europe, and Asia
is also essential for identifying genetics. The ultimate goal of this and the participation of more than
associated environmental factors effort is to obtain genetic material 6,000 people who donated blood
and understanding the interactions from 10,000 people with AD and and tissue for genetic typing. An
of genes and the environment. 10,000 cognitively healthy people important part of NIAs efforts to
These advances ultimately will to comprehensively scan the whole promote and accelerate AD
allow investigators to identify people genome for the remaining AD genetics research is to make
at high risk of developing AD and risk-factor genes, as well as those biological samples and data
help them focus on new pathways for age-related cognitive decline. publicly available to approved
for prevention or treatment. Some of the genetic material will researchers.

OTHER FACTORS AT WORK IN AD rened antibody approaches are now being tested
Genetics explains some of what might cause AD, in clinical trials, and additional research on new
but it does not explain everything. So, researchers ways of harnessing the antibody response contin-
continue to investigate other possibilities that may ues in the lab.
explain how the AD process starts and develops. Another important area of research is how
beta-amyloid may disrupt cellular communication
Beta-Amyloid well before plaques form. One recent study
We now know a great deal about how beta- described how beta-amyloid oligomers target
amyloid is formed and the steps by which specic synaptic connections between neurons,
beta-amyloid fragments stick together in small causing them to deteriorate. Other scientists are
aggregates (oligomers), and then gradually form studying other potentially toxic effects that plaques
into plaques (see page 22 in The Hallmarks of have on neurons and in cellular communication.
AD for more on this process). Armed with this Understanding more about these processes may
knowledge, investigators are intensely interested allow scientists to develop specic therapies to
in the toxic effects that beta-amyloid, oligomers, block the toxic effects.
and plaques have on neurons. This research is
possible in part because scientists have been able Tau
to develop transgenic animal models of AD. Tau, the chief component of neurobrillary tangles
Transgenics are animals that have been specially (see page 25 in The Hallmarks of AD for more
bred to develop AD-like features, such as on tau), is generating new excitement as an area
beta-amyloid plaques. of study. The recent focus on tau has been spurred
Beta-amyloid studies have moved forward to by the nding that a mutant form of the protein
the point that scientists are now carrying out is responsible for one form of frontotemporal
preliminary tests in humans of potential therapies dementia, the third most common cause of late-life
aimed at removing beta-amyloid, halting its dementia, after AD and vascular dementia. This
formation, or breaking down early forms before form is known as frontotemporal dementia with
they can become harmful. parkinsonism linked to chromosome 17 (FTDP-
For example, one line of research by a pharma- 17). Finding this mutant protein was important
ceutical company started with the observation that because it suggested that abnormalities in the tau
injecting beta-amyloid into AD transgenic mice protein itself can cause dementia.
caused them to form antibodies to the beta- New transgenic mouse models of AD have
amyloid and reduced the number of amyloid helped tau research make rapid progress. For
plaques in the brain. This exciting nding led to example, a recent model, the triple transgenic
other studies and ultimately to clinical trials in mouse, forms plaques and tangles over time in
which human participants were immunized with brain regions similar to those in human AD.
beta-amyloid. These studies had to be stopped Another recent transgenic mouse model, which
because some of the participants developed contains only human tau, forms clumps of
harmful side effects, but the investigators did damaging tau laments also in a region-specic
not give up hope. Rather, they went back to the fashion similar to AD in humans.
drawing board to rethink their strategy. More These studies of tau also have suggested a
mechanism for tau damage that is different from
that previously suspected. With these new insights,

scientists now speculate that one reason tau may Protein Misfolding
damage and kill neurons is because it upsets Researchers have found that a number of devastat-
the normal activity of the cell, in addition to ing neurodegenerative diseases (for example, AD,
forming neurobrillary tangles. Parkinsons disease, dementia with Lewy bodies,
Other studies of mutant tau in mice suggest that frontotemporal lobar degeneration, Huntingtons
the accumulation of tau in tangles may not even be the disease, and prion diseases) share a key
culprit in memory loss. Rather, as with beta-amyloid, characteristicprotein misfolding.
it may be that an earlier and more soluble abnormal When a protein is formed, it folds into a
form of the protein causes the damage to neurons. unique three-dimensional shape that helps it
Researchers Explore Neurodegenerative Cousins
N eurodegenerative diseases like AD, Parkinsons

disease, amyotrophic lateral sclerosis (ALS),
and dementia with Lewy bodies share more than the
a combination of genetic, lifestyle, and environmental
causes and they develop over many years.
This graphic shows one way of thinking about
basic characteristic of misfolded proteins. They also how these diseases may be linked as well as what
share clinical characteristics. For example, people makes them unique. By investigating the unique
with AD have trouble moving, a characteristic of characteristics of these diseases as well as the
Parkinsons disease. Sleep-wake disorders, delusions, characteristics they share, scientists hope to learn
psychiatric disturbances, and memory loss occur in even more than they would if they focused on each
all of these diseases. These diseases also result from disease by itself.
Damaging Processes
Lifetime Occurring Before Neurodegenerative
Influences Symptoms Appear Early Symptoms Diseases*
Tremor
Memory loss
Amyloid plaques AD/PD
Executive function AD
Tau tangles problems DLB PD
Genes
Other abnormal Movement problems PDD
Environment protein deposits VaD
Systemic Gait and balance problems
Reduced oxygen
factors flow to tissues Sleep-wake disorders FTLD
Toxic processes Hallucinations ALS
Delusions
Rigidity
*AD = Alzheimers disease, AD/PD = AD with parkinsonism, ALS = amyotrophic lateral sclerosis, DLB = dementia with Lewy bodies,
FTLD = frontotemporal lobar degeneration, VaD = vascular dementia (includes multi-infarct dementia), PD = Parkinsons disease,
PDD = Parkinsons disease with dementia
Adapted from an Emory University illustration

perform its specic function. This crucial process Scientists do not know exactly why or how
can go wrong for various reasons, and more these processes occur, but research into the unique
commonly does go wrong in aging cells. As a characteristics and actions of various misfolded
result, the protein folds into an abnormal shape proteins is helping investigators learn more about
it is misfolded. In AD, the misfolded proteins are the similarities and differences across age-related
beta-amyloid (the cleaved product of APP; see neurodegenerative diseases. This knowledge may
From APP to Beta-Amyloid Plaques on page 22 someday lead to therapies.
for more on the formation of beta-amyloid)
and a cleaved product of tau. The Aging Process
Normally, cells repair or degrade misfolded Another set of insights about the cause of AD
proteins, but if many of them are formed as part comes from the most basic of all risk factors
of age-related changes, the bodys repair and aging itself. Age-related changes, such as inam-
clearance process can be overwhelmed. Misfolded mation, may make AD damage in the brain worse.
proteins can begin to stick together with other Because cells and compounds that are known to be
misfolded proteins to form insoluble aggregates. involved in inammation are found in AD plaques,
As a result, these aggregates can build up, leading some researchers think that components of the
to disruption of cellular communication, and inammatory process may play a role in AD.
metabolism, and even to cell death. These Other players in the aging process that may
effects may predispose a person to AD or other be important in AD are free radicals, which are
neurodegenerative diseases. oxygen or nitrogen molecules that combine easily
with other molecules (scientists
call them highly reactive). Free
radicals are generated
in mitochondria, which are
structures found in all cells,
including neurons.
Mitochondria are the cells
power plant, providing the
energy a cell needs to maintain
its structure, divide, and carry
Mitochondria and
Free Radicals
Any given cell has hundreds of
mitochondria. This illustration
shows twoa healthy mitochon-
drion and an oxidatively stressed
and damaged one. The arrows
indicate the movement of free
radicals, which can spread easily
from damaged mitochondria to
other parts of the cell.

The Brains Vascular System
This image shows the complexity of the human brains
vascular system, particularly large and small arteries
that carry oxygen from the lungs to the brain. Although
many blood vessels are visible here, this image shows
fewer than half of the total number in the brain.
out its functions. Energy for the cell is produced

in an efcient metabolic process. In this process,
free radicals are produced. Free radicals can help
cells in certain ways, such as ghting infection.
However, because they are very active and combine
easily with other molecules, free radicals also can
damage the neurons cell membrane or its DNA.
The production of free radicals can set off a chain
reaction, releasing even more free radicals that
can further damage neurons (see illustration on Vascular Disease
page 42). This kind of damage is called oxidative For some time now, hints have been emerging
damage. The brains unique characteristics, includ- that the bodys vast network of small and large
ing its high rate of metabolism and its long-lived blood vesselsthe vascular systemmay make
cells, may make it especially vulnerable to oxida- an important contribution in the development of
tive damage over the lifespan. The discovery that dementia and the clinical symptoms of AD. Some
beta-amyloid generates free radicals in some AD scientists are focusing on what happens with the
plaques is a potentially signicant nding in the brains blood vessels in aging and AD. Others are
quest for better understanding of AD as well as for looking at the relationship between AD and vascu-
other neurodegenerative disorders and unhealthy lar problems in other parts of the body.
brain aging.
Researchers also are studying age-related AD and Vascular Problems in the Brain
changes in the working ability of synapses in The brain requires a constant and dependable ow
certain areas of the brain. These changes may of oxygen and glucose to survive and ourish. The
reduce the ability of neurons to communicate brains blood vessels provide the highways to deliver
with each other, leading to increased neuronal these vital elements to neurons and glial cells.
vulnerability in regions of the brain important Aging brings changes in the brains blood
in AD. Age-related reductions in levels of vesselsarteries can narrow and growth of new
particular growth factors, such as nerve growth capillaries slows down. In AD, whole areas of
factor and brain-derived neurotrophic factor, nervous tissue, including the capillaries that supply
also may cause important cell populations to be
compromised. Many studies are underway to tease
out the possible effects of the aging process on the
development of AD.

and drain it, also are lost. Blood ow to and from studies). These studies have found, for example,
various parts of the brain can be affected, and the that heart disease and stroke may contribute to the
brain may be less able to compensate for damage development of AD, the severity of AD, or the de-
that accumulates as the disease progresses. velopment of other types of dementia. Studies also
For some time now, study of the brains blood show that high blood pressure that develops dur-
vessel system in AD has been a productive line of ing middle age is correlated with cognitive decline
inquiry. One important nding has been that the and dementia in later life.
brains ability to rid itself of toxic beta-amyloid by Another focus of AD vascular research is the
sending it out into the bodys blood circulation metabolic syndrome, a constellation of factors that
is lessened. Some scientists now think that poor increases the risk of heart disease, stroke, and type
clearance of beta-amyloid from the brain, com- 2 diabetes. Metabolic syndrome includes obesity
bined with a diminished ability to develop new (especially around the waist), high triglyceride
capillaries and abnormal aging of the brains blood levels, low HDL (good cholesterol) levels, high
vessel system, can lead to chemical imbalances in blood pressure, and insulin resistance (a condition
the brain and damage neurons ability to function in which insulin does not regulate blood sugar
and communicate with each other. These ndings levels very well). Evidence from epidemiologic
are exciting because they may help to explain part studies now suggests that people with the meta-
of what happens in the brain during the develop- bolic syndrome have increased risk of cognitive
ment of AD. These ndings also suggest several impairment and accelerated cognitive decline.
new targets for potential AD therapies. Nearly one in ve Americans older than age 60
has type 2 diabetes, and epidemiologic studies
AD and Vascular Problems in suggest that people with this disease may be
Other Parts of the Body at increased risk of cognitive problems, including
Research also has begun to tease out some MCI and AD, as they age. The higher risk
relationships between AD and other vascular associated with diabetes may be the result of high
diseases, such as heart disease, stroke, and type 2 levels of blood sugar, or it may be due to other
diabetes. It is important to sort out the various conditions associated with diabetes (obesity, high
effects on the brain of these diseases because they blood pressure, abnormal blood cholesterol levels,
are major causes of illness and death in the United progressive atherosclerosis, or too much insulin
States today. in the blood). These ndings about diabetes
Much of this evidence comes from epidemio- have spurred research on a number of fronts
logic studies, which compare the lifestyles, be- epidemiologic studies, test tube and animal
haviors, and characteristics of groups of people studies, and clinical trials. The objective of these
(see Describing Scientic Findings: The Type of studies is to learn more about the relationship
Study Makes an Important Difference on page between diabetes and cognitive problems and to
47 for more information about epidemiologic nd out in clinical trials whether treating the disease
rigorously can positively affect cognitive health and
possibly slow or prevent the development of AD.

Lifestyle Factors
We know that physical activity and a nutritious diet
can help people stay healthy as they grow older. A
healthy diet and exercise can reduce obesity, lower
blood cholesterol and high blood pressure, and
improve insulin action. In addition, association
studies suggest that pursuing intellectually
stimulating activities and maintaining active
contacts with friends and family may contribute
to healthy aging. A growing body of evidence now
suggests that these lifestyle factors may be related Epidemiologic studies show that higher levels
to cognitive decline and AD. Researchers who of physical activity or exercise in older people are
are interested in discovering the causes of AD are associated with reduced risk of cognitive decline
intensively studying these issues, too. and reduced risk of dementia. Even moderate
exercise, such as brisk walking, is associated with
Physical Activity and Exercise reduced risk.
Exercise has many benets. It strengthens muscles, Clinical trials show some evidence of short-term
improves heart and lung function, helps prevent positive effects of exercise on cognitive function,
osteoporosis, and improves mood and overall well- especially executive function (cognitive abilities
being. So it is not surprising that AD investigators involved in planning, organizing, and decision
began to think that if exercise helps every part of making). One trial showed that older adults who
the body from the neck down, then it might help participated in a 6-month program of brisk
the brain as well. walking showed increased activity of neurons in
Epidemiologic studies, animal studies, and key parts of the brain.
human clinical trials are assessing the inuence More clinical trials are underway to expand
of exercise on cognitive function. Here are a few our knowledge about the relationship of exercise
things these studies have found: to healthy brain aging, reduced risk of cognitive
decline, and development of AD. (See Partici-
Animal studies have shown that exercise in-
pating in a Clinical Trial on page 59 for more
creases the number of capillaries that supply blood
information).
to the brain and improves learning and memory in
older animals.
Diet
Researchers have explored whether diet may help
preserve cognitive function or reduce AD risk,
If you want to know more about the
with some intriguing ndings. For example,
benets of exercise and physical activity
studies have examined specic foods that are rich
and learn ways to be active every day,
in antioxidants and anti-inammatory properties
NIA has free information just for you!
to nd out whether those foods affect age-related
Call 1-800-222-2225 or visit
www.nia.nih.gov/Exercise.

changes in brain tissue. One laboratory study In one of these studies, researchers worked
found that curcumin, the main ingredient of with older adults living in New York who ate the
turmeric (a bright yellow spice used in curry), Mediterranean dieta diet with lots of fruits,
can bind to beta-amyloid and prevent vegetables, and bread; low to moderate
oligomer formation. Another study in amounts of dairy foods, sh, and
mice found that diets high in DHA poultry; small amounts of red meat;
(docosahexaenoic acid), a type of low to moderate amounts of wine;
healthy omega-3 fatty acid found and frequent use of olive oil. The
in fish, reduced beta-amyloid researchers found that sticking
and plaques in brain tissue. to this type of diet was associated
Other studies have shown with a reduced risk of AD and
that old dogs perform better on that the association seemed to
learning tasks when they eat diets be driven by the whole approach,
rich in antioxidants, such as vitamin rather than by its individual dietary
E and other healthful compounds, while components. A follow-up study found
living in an enriched environment (one in that this pattern also was associated with
which the dogs have many opportunities to play and longer survival in people with AD.
interact with people and other dogs). All of these results are exciting and suggestive,
Scientists also have examined the effects of but they are not denitive. To conrm the results,
diet on cognitive function in people. A very large scientists are conducting clinical trials to examine the
epidemiologic study of nurses found an association relationship of various specic dietary components
between participants who ate the most vegetables and their effect on cognitive decline and AD.
(especially green leafy and cruciferous vegetables)
and a slower rate of cognitive decline compared Intellectually Stimulating
with nurses who ate the least amount of these Activities and Social Engagement
foods. An epidemiologic study of older adults Many older people love to read, do puzzles, play
living in Chicago found the same association. The games, and spend time with family and friends. All
researchers do not know the exact reason behind these activities are fun and help people feel alert
this association, but speculate that the benecial and engaged in life. Researchers are beginning to
effects may result from the high antioxidant and nd other possible benets as well, for some studies
folate content of the vegetables. have shown that keeping the brain active is associ-
Dietary studies, such as the curcumin study in ated with reduced AD risk. For example, over a
mice or the vegetables study in nurses, generally 4-year period, one group of researchers tracked how
examine individual dietary components so that often a large group of older people did activities
scientists can pinpoint their specic effects on an that involved signicant information processing,
issue of interest. This approach has obvious such as listening to the radio, reading newspapers,
limitations because people do not eat just single playing puzzle games, and going to museums. The
foods or nutrients. Several recent epidemiologic researchers then looked at how many of the partici-
studies have taken a different approach and looked pants developed AD. The researchers found that
at an entire dietary pattern.

the risk of developing AD was 47 percent lower in The reasons for these ndings are not entirely
the people who did them the most frequently clear, but a number of explanations are possible.
compared with the people who did the activities Among them:
least frequently. Another study supported the value
Intellectually stimulating activities and social
of lifelong learning and mentally stimulating
engagement may protect the brain in some way,
activity by nding that, compared with older study
perhaps by establishing a cognitive reserve.
participants who may have had AD or who had
These activities may help the brain become
AD, healthy older participants had engaged in more
more adaptable and exible in some areas of
mentally stimulating activities and spent more time
mental function so that it can compensate for
at them during their early and middle adulthood.
declines in other areas.
Studies of animals, nursing home residents, and
Less engagement with other people or in
people living in the community also have suggested
intellectually stimulating activities could be
a link between social engagement and cognitive
the result of very early effects of the disease
performance. Older adults who have a full social
rather than its cause.
network and participate in many social activities tend
People who engage in stimulating activities may
to have less cognitive decline and a decreased risk of
have other lifestyle qualities that may protect
dementia than those who are not socially engaged.
them against developing AD.
Describing Scientic Findings:

The Type of Study Makes an Important Difference
T hese days, the media are

full of stories about scientic
studies. It can be hard to know
followed by the participants. That
is why, in epidemiologic studies of
AD, scientists only say that a nd-
of control allows scientists to be
more certain about why they get
the results they do. It also allows
what to conclude about their nding is associated with AD, or not. them to be more denitive in the
ings. Knowing how the study was The epidemiologic evidence linking words they use to describe their
conducted can help put the results a behavior and AD is, at best, sug- results. Of course, showing a
into the right perspective. gestive, but we do not know that cause-and-effect relationship in
One main type of research is the behavior by itself actually helps tissue samples or even in animal
the epidemiologic study. These to cause or prevent AD. studies still does not mean that the
studies are observationalthey Other types of researchtest relationship will be the same in
gather information about people tube studies and studies in ani- humans. Clinical trials in humans
who are going about their daily malsadd to the ndings from are the gold standard for decid-
lives. Study participants follow epidemiologic studies. Scientists ing whether a behavior or a
many behaviors and practices. It use them to examine the same specic therapeutic agent
is difcult, therefore, to determine issue but in ways in which the actually prevents or delays AD
the exact benets or risks of one various factors that might inu- (see Participating in a Clinical
particular behavior from among all ence a result are controlled to Trial on page 59 for more on
the healthy or harmful behaviors a greater degree. This element this kind of research).

New Techniques
Help in
Diagnosing AD
A man in his mid-60s begins to notice that his mimic those of AD. Finding out early that the
memory isnt as good as it used to be. More and more observed changes in cognitive abilities are not AD
often, a word will be on the tip of his tongue but but something else is almost always a relief and
he just cant remember it. He forgets appointments, may be just the prod needed to seek appropriate
makes mistakes when paying his bills, and nds that medical treatment (see Causes of Dementia on
hes often confused or anxious about the normal hustle page 50 for more information). For the small
and bustle of life around him. One evening, he sud- percentage of dementias that are treatable or
denly nds himself walking in a neighborhood he even reversible, early diagnosis increases the
doesnt recognize. He has no idea how he got there or chances of successful treatment. Increasing early
how to get home. diagnosis and improving treatment are among
NIAs most important goals.
N
ot so long ago, this mans condition Even when the cause of a loved ones dementia
would have been swept into a broad turns out to be AD, it is best to nd out sooner
catch-all category called senile rather than later. One benet of knowing is medi-
dementia or senility. Although we cal. The drugs now available to treat AD can help
now know that AD and other causes of dementia are some people maintain their mental abilities for
distinct diseases, in the early stages it is difcult to months to years, although they do not change
differentiate between the onset of AD and other types the underlying course of the disease (see Helping
of age-related cognitive decline. We have improved People with AD Maintain their Mental Function-
our ability to diagnose AD correctly, and doctors ing on page 55 for more about these drugs).
experienced in AD can diagnose the disease with up Other benets are practical. The sooner the per-
to 90 percent accuracy. A denitive diagnosis of AD, son with AD and the family have a rm diagnosis,
however, is still only possible after death, during an the more time they have to make future living
autopsy, and we are still far from the ultimate goal arrangements, handle nancial matters, establish
a reliable, valid, inexpensive, and early diagnostic a durable power of attorney and advance direc-
marker that can be used in any doctors ofce. tives, deal with other legal issues, create a support
Early diagnosis has several advantages. For
example, many conditions cause symptoms that

Current Tools for Diagnosing AD
W ith the tools now available,

experienced physicians
can be reasonably condent about
how behavior and personality
have changed; many times,
family and friends know some-
They may do a computed
tomography (CT) scan or a
magnetic resonance imaging
making an accurate diagnosis of thing is wrong even before (MRI) test:
AD in a living person. Here is changes are evident on tests. CT and MRI scans can detect
how they do it. strokes or tumors or can reveal
They conduct physical and changes in the brains structure
They take a detailed neurological examinations that indicate early AD.
patient history, including: and laboratory tests:
A description of how and when Blood and other medical tests Exams and tests may be repeated
symptoms developed. help determine neurological every so often to give physicians
A description of the persons functioning and identify possible information about how the persons
and his or her familys overall non-AD causes of dementia. memory and other symptoms are
medical condition and history. changing over time.
An assessment of the persons They conduct neuro- Based on ndings from these
emotional state and living psychological testing: exams and tests, experienced
environment. Question-and-answer tests physicians can diagnose or rule
or other tasks that measure out other causes of dementia, or
They get information memory, language skills, ability determine whether the person has
from family members or to do arithmetic, and other MCI, possible AD (the symptoms
close friends: abilities related to brain func- may be due to another cause), or
People close to the person can tioning help show what kind of probable AD (no other cause for
provide valuable insights into cognitive changes are occurring. the symptoms can be found).
network, and even consider joining a clinical trial with them for as long as possible. Finally, early
or other research study. Being able to participate diagnosis gives family caregivers the opportunity to
for as long as possible in making personal decisions learn how to recognize and cope with changes over
is important to many people with AD. time in their loved one as well as to develop strate-
Early diagnosis also gives families time to recog- gies that support their own physical, emotional,
nize that life does not stop with a diagnosis of AD. and nancial health.
The person is still able to participate in many of
the daily activities he or she has always enjoyed,
and families can encourage the person to continue

Causes of Dementia
D ementia is the loss of cognitive functioningthinking, remembering, and reasoningto such

an extent that it interferes with a persons daily life and activities. It is not a disease itself, but a
group of symptoms that often accompanies a disease or condition. Some dementias are caused by
neurodegenerative diseases. Dementia also has other causes, some of which are treatable.
Neurodegenerative Diseases that Cause Dementia Other Causes of Dementia

Alzheimers disease Medication side effects
Vascular dementia Depression
Parkinsons disease with dementia Vitamin B12 deciency
Frontotemporal lobar degeneration, including: Chronic alcoholism
frontotemporal dementia Certain tumors or infections of
frontotemporal dementia with parkinsonism the brain
linked to chromosome 17 (FTDP-17) Blood clots pressing on the brain
Picks disease Metabolic imbalances, including
supranuclear palsy thyroid, kidney, or liver disorders
corticobasal degeneration
Scientists also see advantages to early diagnosis. measured through memory and recall tests. Tests
Developing tests that can reveal what is happen- that measure a persons abilities in areas such as
ing in the brain in the early stages of AD will help abstract thinking, planning, and language can
them understand more about the cause and devel- help pinpoint changes in these areas of cognitive
opment of the disease. It also will help scientists function. Researchers are working to improve
learn when and how to prescribe the use of drugs standardized tests that might be used to point
and other treatments so they can be most effective. to early AD or predict which individuals are at
higher risk of developing AD in the future.
EXCITING NEW DEVELOPMENTS Other studies are examining the relationship
IN AD DIAGNOSIS between early damage to brain tissue and out-
Scientists are now exploring ways to help physicians ward clinical signs. Still others are looking for
diagnose AD earlier and more accurately. For changes in biomarkers in the blood or cerebro-
example, some studies are focusing on changes spinal uid that may indicate the progression of
in mental functioning. These changes can be AD (see Very Early Signs and Symptoms on
page 28 for more on this work).
One of the most exciting areas of ongoing
research in this area is neuroimaging. Over the
past decade, scientists have developed several

highly sophisticated imaging systems that have
been used in many areas of medicine, including
AD. PET scans, single photon emission
computed tomography (SPECT), and MRI are
all examples. These windows on the living brain
may help scientists measure the earliest changes
in brain function or structure in order to identify
people who are at the very rst stages of the
diseasewell before they develop clinically
apparent signs and symptoms.
To help advance this area of research, NIA
launched the multi-year AD Neuroimaging
Initiative (ADNI) in 2004. This project is fol-
lowing about 200 cognitively healthy individuals
and 400 people with MCI for 3 years and 200
people with early AD for 2 years. Over the course
of this study, participants undergo multiple MRI
and PET scans so that study staff can assess how
the brain changes in the course of normal aging Biological samples also are available for approved
and MCI, and with the progression of AD. By biomarker projects. NIA hopes that this initiative
using MRI and PET scans at regularly scheduled will help create rigorous imaging and biomarker
intervals, study investigators hope to learn when standards that will provide measures for the
and where in the brain degeneration occurs as success of potential treatments. This would
memory problems develop. substantially increase the pace and decrease the
Another innovative aspect of ADNI is that cost of developing new treatments. The ADNI
scientists are correlating the participants imaging study is being replicated in similar studies by
information with information from clinical, researchers in Europe, Japan, and Australia.
memory, and other cognitive function tests, and These types of neuroimaging scans are still
with information from blood, cerebrospinal uid, primarily research tools, but one day they may be
and urine samples. Results from these samples used more commonly to help physicians diagnose
may provide valuable biomarkers of disease AD at very early stages. It is conceivable that
progress, such as changing levels of beta-amyloid these tools also may someday be used to monitor
and tau, indicators of inammation, measures of the progress of the disease and to assess responses
oxidative stress, and changing cognitive abilities. to drug treatment.
An important ADNI achievement is the
creation of a publicly accessible database of
images, biomarker data, and clinical information
available to qualied researchers worldwide.

New Technologies Help People Participate in AD Research at Home
T raditionally, AD scientists have collected data by

asking people to come to a clinic once or twice a
year over a period of years. They give the participants
Science University is exploring the use of unobtrusive,
simple technology and intelligent systems to detect
and monitor subtle changes in movement that may
a physical exam and ask them to take a series of indicate age-related cognitive changes. This project is
memory, language, and other cognitive function tests. building on research that has suggested that motor-
These studies collect much useful information, but function changes may arise before memory changes
they have their limitations. For one thing, participants become apparent (see Very Early Signs and
are seen only once or twice during the year, so the Symptoms on page 28 for more on this research).
data collected represent only a snapshot in time. All of the 300 study participants are 80 years or
The studies cannot effectively capture day-to-day older or have a spouse of a similar age, and live
uctuations in behaviors and cognitive abilities. independently in Portland-area retirement communi-
Another limitation is that participants are seen in ties. Wireless, infrared motion sensors, like those
a research setting, not in their natural community used to automatically open grocery store doors, have
environment. For many, coming to the clinic can be been placed strategically throughout the participants
inconvenient, difcult, or both. homes to gather data about changes in their walking
Advances in technology, as shown in the two or dressing speed over time. Special software also
research projects described here, offer some hope has been installed on each participants home
for dealing with these challenges by bringing computer to measure motor skills and speed in typing
research to people right in their own homes. or using a mouse. The sensors and computer software
collect data about motion, not what the volunteer
MOTION DETECTORS TELL is actually doing. Privacy is largely not a concern
AN INTERESTING STORY therefore, because the volunteers are not directly
Scientists who are trying to develop methods for observed and no video or photographs are taken.
diagnosing AD as early as possible continually The 3-year study began in early 2007, so results
grapple with two challenges in conducting their are not yet available. However, a small pilot study
research. First, they need to nd easy and accurate using the same type of sensors showed a clear
ways to collect data from older people, who often difference in the walking speeds of people age 65
have physical, emotional, or cognitive problems. and older who had MCI, compared with cognitively
Second, they need to nd ways to assess accurately healthy people of the same age, over time periods
the very early changes in physical or cognitive of nearly a year. These data suggest that a remote
abilities that could indicate that AD is progressing. sensing system like this is a feasible technology and is
Under an NIA grant, the Oregon Center for Aging potentially sensitive enough to distinguish accurately
and Technology (ORCATECH) at Oregon Health & between affected and unaffected people.

This photo shows ORCATECH
study participants at home. The
small device between the photo-
graphs on the wall is an infrared
motion sensor.
USING TECHNOLOGY mood. This study is looking at questions such as

TO COLLECT DATA AT HOME how likely people are to complete the questions
Researchers at nearly 30 sites nationwide are using each method, which method is the most
comparing various ways of collecting data, including efcient, and how sensitive each method is.
the use of an in-home kiosk that combines a Having a data collection system that is easy to
touch-screen computer monitor with a telephone use and that collects data accurately and completely
handset, an interactive voice-response system, and may encourage wider participation in AD clinical
traditional mail and telephone. All three methods trials. It also may reduce the expense and burden of
gather the same data about several areas known to conducting AD research. Early results from this study
be important in early detection of cognitive decline: show that the older participants were skeptical at rst
memory; language skills; attention and concentration; about using the kiosk, but once they learned how to
activities of daily living; quality of life; health care use it, they became enthusiastic and excited about
and resource use; and changes in global well-being participating.
as measured by self-rating of health, cognition, and

The
Search
for New Treatments
M
ore and more, scientists are able most immediate need is for treatments to control
to think about ways to treat, slow, cognitive loss as well as problem behaviors, such as
or perhaps even prevent AD at a aggression, agitation, wandering, depression, sleep
number of possible points during disturbances, hallucinations, and delusions. Safe
the years-long continuum of disease progression. medications that remain effective over time are
This continuum begins with the very earliest needed to ease a broad range of symptoms and to
disease stage, even before symptoms are evident, improve a persons cognitive function and ability
moves to the rst signs of memory and cognitive to carry out activities of daily living. Scientists also
problems, then continues through the mild and are investigating treatments that combine medica-
moderate stages, and ends with the very late stages tions with lifestyle strategies to lessen the risk of
and the persons death. developing cognitive decline or AD. Eventually,
As a result, researchers who focus on developing scientists hope to develop treatments that attack
AD treatments think a lot about the importance the earliest manifestations and underlying causes
of timing: When would it be best to intervene of AD, thereby slowing, delaying, or preventing
and what interventions are most appropriate at the disease from progressing and damaging cog-
which time? These questions are similar to those nitive function and quality of life. Scientists use
asked with other conditions, such as heart disease. clinical trials to pursue all these goals.
For example, a physician would prescribe different Today, NIA, other NIH institutes, and private
treatments for a patient who is seemingly healthy industry are conducting many clinical trials of
but who is at risk of having future heart disease AD interventions (see page 59 for more about
than for a patient who is actually having a heart clinical trials). These studies focus on several
attack or whose heart disease is well established. The key areas:
same decision process now can be applied to AD.
Helping people with AD maintain their mental
It has become clear that there probably is no
functioning
single magic bullet that will, by itself, prevent or
Managing symptoms
cure AD. Therefore, investigators are working to
Slowing, delaying, or preventing AD
develop an array of options from which physicians
can choose. For people who already have AD, the

HELPING PEOPLE WITH
AD MAINTAIN THEIR MENTAL
FUNCTIONING
In the mid-1970s, scientists discovered that
levels of a neurotransmitter (a chemical that carries
messages between neurons) called acetylcholine
fell sharply in people with AD. This discovery was
one of the rst that linked AD with biochemical
changes in the brain. Scientists found that
acetylcholine is a critical player in the process of
forming memories. It is used by neurons in the
hippocampus and cerebral cortex, which are areas
of the brain important to memory function. This
discovery was an important initial breakthrough in
the search for drugs to treat AD.
Four medications, tested in clinical trials, have
been approved by the FDA for use in treating AD
symptoms. Donepezil (Aricept), rivastigmine
(Exelon), and galantamine (Razadyne) are pre-
scribed to treat mild to moderate AD symptoms.
Donepezil was recently approved to treat severe
AD as well. These drugs, known as cholinesterase
inhibitors, act by stopping or slowing the action of
acetylcholinesterase, an enzyme that breaks down
acetylcholine. They help to maintain higher levels
of acetylcholine in the brain. In some people, the
drugs maintain abilities to carry out activities of
daily living. They also may maintain some think-
ing, memory, or speaking skills, and can help with
certain behavioral symptoms. However, they will
not stop or reverse the underlying progression of
AD and appear to help people only for months to
a few years. The newest approved AD medication
is memantine (Namenda), which is prescribed to
treat moderate to severe AD symptoms. This drug
appears to work by regulating levels of glutamate,
another neurotransmitter involved in memory
function. Like the cholinesterase inhibitors,
memantine will not stop or reverse AD.

MANAGING SYMPTOMS The damage of AD affects many different parts

of the brain. This presents a problem because even
My father is often agitated. He paces up and down,
small tasks require the brain to process signals that
wringing his hands and crying. I know hes sad or
often involve more than one region of the brain. If
anxious about something but he cant tell me whats
this processing is disrupted because of AD, the
bothering him. Asking him about it just makes him
person may not be able to do the task or may act
more upset.
in a strange or inappropriate way.
Last week, I visited Mom in the nursing home. We In light of our growing understanding about the
had a great time. Then yesterday, I went to see her effects of AD on the brain, behaviors like the ones
again. When I walked into her room, she didnt know highlighted above suddenly make sense or even
me. She thought I was her sister. provide a loving opportunity for caregivers:
My husband used to be such an easy going, calm For a man who can no longer distinguish between past
person. Now, he suddenly lashes out at me and uses and present, the anguish caused by the death of a par-
awful language. Last week, he got angry when our ent may be as real today as it was many years before.
daughter and her family came over and we sat down
Sitting down to a family meal may produce
to eat. I never know when its going to happen. Hes
intense anxiety when a person has no idea what to do
changed so muchit scares me sometimes.
with the knife and fork in front of him and all the
Gran hums all the time. She used to be a singer. Is conversation and activity feel overwhelming.
she trying to relive her past?
Memories of favorite songs from long ago resurface and
As AD begins to affect memory and mental provide a compelling link to a happy time in the past.
abilities, it also begins to change a persons emo-
Behavioral symptoms, often emotional and
tions and behaviors. Between 70 and 90 percent
upsetting, are one of the hardest aspects of the
of people with AD eventually develop one or more
disease for families and other caregivers to deal
behavioral symptoms. These symptoms include
with. They are also a visible sign of the terrible
sleeplessness, wandering and pacing, aggression,
change that has taken place in the person with
agitation, anger, depression, and hallucinations
AD. Researchers are slowly learning more about
and delusions. Some of these symptoms may
why behavioral symptoms occur and are conduct-
become worse in the evening (a phenomenon
ing clinical trials on new treatmentsboth drug
called sundowning) or during daily routines,
and non-drugto deal with difcult behaviors.
especially bathing.
Coping with Behavioral Symptoms

For more information on how to deal with
behavioral issues and symptoms, visit the
caregiving section of NIAs Alzheimers
Disease Education and Referral (ADEAR)
Center website at: www.nia.nih.gov/
Alzheimers/Caregiving/HomeAndFamily.

SLOWING, DELAYING,
OR PREVENTING AD
AD research has developed to the point where
scientists are looking beyond treating symptoms
to addressing the underlying disease process.
Slowing the progress of AD could do much to
maintain the functioning of people with AD and
reduce physical and emotional stress on caregivers.
Delaying ADs effects also could help to postpone
or prevent placement in an assisted living facility
or nursing home, and reduce the nancial costs of
the disease. Preventing AD altogether is, of course,
the ultimate long-term goal.
NIA and pharmaceutical companies support
treatment clinical trials that are aimed at slow-
ing, delaying, or preventing AD. The advances
in our knowledge about the mechanisms and risk
factors associated with AD have expanded the memory performance. The trial will provide
types of interventions under study. These trials useful data on the safety, feasibility, and
are examining a host of possible interventions, potential effectiveness of this innovative treatment
including cardiovascular treatments, hormones, approach. Investigators may be able to use the
type 2 diabetes treatments, antioxidants, omega-3 results to plan future full-scale clinical trials.
fatty acids, immunization, cognitive training, and Beyond pilot studies, investigators also are
exercise, among others. conducting full-scale AD clinical trials of various
For example, NIA funds pilot trials to learn interventions. One of these trials, the Alzheimers
whether treating one or another aspect of type 2 Disease Cooperative Study (ADCS), is testing
diabetes will affect cognitive health and AD pro- whether one omega-3 fatty acid (DHA), found in
gression. A pilot trial is a relatively small clinical the oil of certain sh, can slow the progression of
trial that collects initial data on the safety, cognitive and functional decline in people with
effectiveness, and best dosage of a potential mild to moderate AD. During the 18-month
treatment. This information helps investigators clinical trial, investigators will measure the
decide which treatments should be tested in progress of the disease using standard tests for
larger, full-scale trials. One 4-month pilot trial functional and cognitive change. Researchers also
has examined the effects on AD of administering will evaluate whether taking DHA supplements
a nasal-spray form of insulin. This trial is has a positive effect on possible physical and
founded on evidence that AD is associated with biological markers of AD, such as brain atrophy
reduced levels of insulin in cerebrospinal uid
and that treatment with insulin improves

and proteins in blood and spinal uid. The ADCS Cancer Prevention Trial (SELECT). SELECT
is a federally established consortium conducting is evaluating whether taking selenium and/or
clinical trials on AD, with sites across the United vitamin E supplements can prevent prostate
States and Canada. cancer in healthy men older than 60 years.
Full-scale AD prevention trials are under- PREADVISE is evaluating whether these
way as well. One such trial, Prevention of supplements can help prevent memory loss and
Alzheimers Disease with Vitamin E and dementia by protecting brain cells from oxidative
Selenium (PREADVISE), is being conducted in damage (see The Aging Process on page 42 for
conjunction with a National Cancer Institute- more on oxidative damage). About 6,000 of the
funded trial called the Selenium and Vitamin E more than 30,000 men enrolled in SELECT are
participating in PREADVISE.

Participating in a Clinical Trial
R apid advances in our

knowledge about AD have
led to the development of many
a trial. Here are some facts that
potential participants might want to
know about clinical trials.
small number of participants and
examines its action in the body
and its safety. The main goals of
promising new drugs and treatment Phase I trials are to establish the
strategies. However, before these WHAT KIND OF highest dose of a new drug that
new strategies can be used in clini- TRIALS ARE THERE? people can tolerate and to dene
cal practice, they must be shown Treatment trials with existing drugs the dose at which people may
to work in people. This means or behavioral strategies assess begin to experience harmful side
that clinical trialsand volunteer whether an intervention already effects. These trials generally last
participantsare an essential approved for other purposes may only a few months.
part of AD research. Advances be useful in treating age-related If results show that the treat-
in prevention and treatment are cognitive decline or AD. For ment appears to be safe, it will
possible thanks to volunteers who example, trials have tested whether go on to Phase II and Phase
participate in clinical trials. drugs used to lower cholesterol III clinical trials. Phase II trials
Clinical trials are the primary help slow progression of AD. involve larger numbers of people
way that researchers nd out if Treatment trials with experimental studied over longer periods of
a promising treatment is safe. drugs or strategies show whether time than Phase I trials. In these
Clinical trials tell researchers which a new drug or treatment approach trials, the study team wants to
treatments are the most effective can help improve cognitive function know whether the treatment is
and for which people they may or lessen symptoms in people with safe and effective at changing
work best. Trials can take place AD, slow the progression to AD, the course of the disease. Phase
in various settings, such as private or prevent it. Interventions tested II trials occasionally also involve
research facilities, teaching hos- in these trials are developed from the use of a placebo (an inactive
pitals, specialized AD research knowledge about the mechanisms substance that looks like the study
centers, and doctors ofces. FDA involved in the AD process. Experi- drug). Results from Phase II trials
approval is necessary before mental drugs, for example, are give study staff an indication of
scientists can begin a clinical trial. rst tested in tissue culture and in the effective dose to take into
Participating in a clinical trial animals to determine their actions in Phase III trials. Phase III trials are
is a big step for anyone, including the body. Safety and effectiveness large studies that compare an
people with AD and their care- studies are also conducted in experimental treatment with a
givers. That is why physicians and animals before the compounds placebo or standard treatment
clinical trials staff spend time talking are tested in humans. to determine safety and efcacy
with participants about what it is (whether the treatment has the
like to be in a trial and the pros and WHAT ARE THE PHASES power to produce an effect).
cons of participating. It is also why OF CLINICAL TRIALS? After these phases are complete
they get a signed informed consent During Phase I trials, a research
form before a person enrolls in team gives the treatment to a C ont i nu e d o n nex t p a ge

Participating in a Clinical Trial (Continued)
and investigators are satised that representative (usually a family groups may receive a different
the treatment is safe and effective, member) to give permission for the drug, a placebo, or a different
the study team may submit its person to participate. Laws and intervention. Comparing results for
data to the FDA for approval. FDA regulations regarding informed different groups gives researchers
experts review the data and consent differ across States and condence that changes in the
decide whether to approve the research institutions, but all are test group are the result of the
drug or treatment for use in patients intended to ensure that participants experimental treatment and not
with the disease under study. are protected and well cared for. some other factor, such as the
Next, people go through a placebo effect (this is when people
WHAT HAPPENS WHEN screening process to see if they feel an effect because they think
A PERSON SIGNS UP FOR A qualify to participate in the trial. they are getting the test medica-
CLINICAL TRIAL? If they qualify and can safely tion even though they are really
First, it is important to learn participate, then they are enrolled getting a placebo). In many trials,
about the trial. Staff at the clinical in the trial. no onenot even the research
research center explain the trial teamknows who is getting the
in detail to potential participants WHAT HAPPENS treatment and who is getting the
and describe possible risks DURING A TRIAL? placebo or other intervention. This
and benets. Staff also talk If participants agree to join the means that the participant, family
about the participants rights as trial and an evaluation process member, and the staff are blind
research volunteers, including shows they meet all the criteria for to the treatment being received.
their right to leave the trial at participation, then a baseline This kind of trial is called a double-
any time. Participants and their visit is scheduled with the trial blind, placebo-controlled trial.
family members are entitled to staff. This visit generally involves As the trial progresses, partici-
have this information repeated cognitive and physical tests. This pants and family members usually
and explained until they feel they gives the team information against must follow strict medication or
understand the nature of the trial which to measure future mental treatment instructions and keep
and any potential risks. and physical changes. detailed records of symptoms. Every
After all questions have been In most clinical trials, partici- so often, participants visit the clinic
answered, participants who are pants are randomly assigned to or research center to have physical
still interested in joining the trial different study groups so that and cognitive exams, give blood
are asked to sign an informed each study group has people and urine samples, and talk with
consent form. In some cases, a in it of about the same average trial staff. These visits allow the inves-
participant may no longer be characteristics (such as age, sex, tigators to collect information on the
able to provide informed consent educational level, or cognitive effects of the test drug or treatment,
because of problems with memory ability). One group, the test see how the disease is progressing,
and thinking. In such cases, it is group, receives the experimental and see how the participant and
still possible for an authorized drug or intervention. Other the caregiver are doing.
60 ALZHEIMERS DI SE ASE Unraveling the Mystery

WHAT SHOULD choose which study group to be
PEOPLE CONSIDER in, or not knowing for a long time
BEFORE PARTICIPATING IN whether the study was successful.
A CLINICAL TRIAL? Ongoing and open communica-
People who have participated in tion with study staff can help to
AD clinical trials say that its a good reduce this frustration.
idea to consider the following issues Finding the right clinical
before deciding to join a trial. trial. Some clinical trials involve
participants who are cognitively
Expectations and motiva-
healthy or have only mild symp-
tions. The test drug or treatment
toms because they are testing a give insights into what to expect
may relieve a symptom, change
drug that might delay a decline in the future. They also can share
a clinical measurement, or reduce
in cognitive function. Other trials information about support groups
the risk of death, but clinical trials
involve participants who have and other helpful resources.
generally do not have miraculous
more advanced AD because they
results and participants may not
are testing a treatment that might FOR MORE INFORMATION
receive any direct benet. With
lessen behavioral symptoms. Or, a To learn more about AD clinical
a complex disease like AD, it is
trial may be testing new strategies trials, visit the Alzheimers Disease
unlikely that one treatment will
to help caregivers. Even if a par- Education and Referral (ADEAR)
cure or prevent the disease. Some
ticipant is not eligible for one trial, Centers Clinical Trials Database
people choose not to participate
another trial may be just right. website (www.nia.nih.gov/
or decide to drop out of a study
The biggest benet of all. Alzheimers/ResearchInformation/
because this reality does not meet
Many families nd that the biggest ClinicalTrials). This NIA website
their expectations. Others choose
benet of participating in a clinical includes a list of AD and dementia
to stay in a trial because they
trial is the regular contact with the clinical trials currently in progress
realize that even if they get no
study team. These visits provide an at research centers throughout
or only a slight benet, they are
opportunity to get state-of-the-art the United States. It also provides
making a valuable contribution to
AD care and to talk regularly with information about the phases
knowledge that will help people
AD experts who have lots of practi- of clinical trials and how to
in the future.
cal experience and a broad per- participate, explains the drug
Uncertainty. Some families
spective on the disease. The study development process, and provides
have a hard time with the un-
team understands and can provide links to other useful websites.
certainties of participationfor
advice about the emotional and Also, visit the clinical trials web-
example, not knowing whether
physical aspects of the person with sites of the National Institutes
the person is taking the test
AD and the caregivers experi- of Health (www.clinicaltrials.gov)
treatment, a placebo, or a control
ence. Team members can suggest or the Alzheimers Association
treatment, not being able to
ways to cope with the present and (www.alz.org).

PART
4
Improving Support
for Families
and Other
Caregivers
O
ne of the greatest costs of AD can One of the hardest decisions that many
be the physical and emotional toll families face is whether and when to place
on family members, caregivers, and a loved one with AD in a nursing home or
friends of people with the disease. other type of care facility. Once this decision
The changes in a loved ones personality and is made, families must decide what type of
mental abilities; the need to provide constant, care is best for the person and the family.
loving attention for years on end; and the demands Many investigators are working to identify
of bathing, dressing, and other caregiving duties in strategies that can lead to improved quality of
the later stages of the disease can be hard to bear. care in various facilities, including adult day
Many caregivers must assume new and unfamiliar care centers, assisted living facilities, continuing
roles in the family, and these changes can be both care retirement communities, nursing homes,
difcult and sad. Not surprisingly, caregivers of and special care units (separate areas within
people with dementia spend signicantly more nursing homes or assisted living facilities
time on caregiving tasks than do caregivers of designed especially for people with
people with other types of illnesses. dementia).
Who Are AD Family Caregivers?

Many primary caregivers are family raising children of their own. Brothers and sisters: Siblings
members, and NIA-funded research Juggling two sets of responsibilities may assume primary responsibility
has shown that the value of informal is often tough for these members for care if they live close by. Many
family caregiving of people with of the sandwich generation. of these caregivers also are older
cognitive impairment adds up to and may be coping with their own
Daughters-in-law: Many women
billions of dollars every year. Who frailties or health problems.
in this group help take care of an
are these family caregivers?
older person with AD. They are Grandchildren: Older children
Spouses: This is the largest group the third largest group of family may become major helpers in
of caregivers. Most are older, too, caregivers. caring for a grandparent with AD.
and many have their own health Grandchildren may need extra
Sons: Although many are involved
problems. support if their parents attention is
in the daily care of a parent with
heavily focused on the ill grand-
Daughters: The second largest AD, sons often focus on the nan-
parent or if the grandparent with
group of primary caregivers is cial, legal, and business aspects of
AD lives in the familys home.
daughters. Many are married and caregiving.
ALZHEIMERS DISEASE Unraveling the Mystery 63

P A R T 4 Improving Support for Families and Other Caregivers
Research Findings Benet

Caregivers
A
lthough research on family caregiver
support is still in its early days, we have
already learned much about the unique
aspects of caregivers personalities and
situations. For example, it is well established that
AD caregivers often experience stress, anxiety,
depression, and other mental health problems as a
result of the continuing and demanding nature of
AD care. This chronic stress can have detrimental
effects on the physical health of caregivers. The
physical and emotional effects of AD caregiving
can last a long time, even after the death of the
person with AD.
On the other hand, research also has shown
that caregiving can have important positive effects, AD caregivers do not all have the same
including: psychological and physical response to caregiving.
For example, caregivers who have strong support
A new sense of purpose or meaning in life
systems and well-developed coping skills may be
Fulllment of a lifelong commitment to a spouse
able to weather the stresses of caring for a loved
An opportunity to give back to a parent some
one with AD. Others who have few breaks from
of what the parent has given to them
caregiving responsibilities and/or have preexisting
Renewal of religious faith
illnesses may be more vulnerable to the physical
Closer ties with people through new relation-
and emotional stresses associated with dementia
ships or stronger existing relationships
care. Caregiver research is beginning to discover
effective ways to ease the burden of caregiving.
Researchers have learned that:
The information and problem-solving needs
of caregivers evolve over time as AD progresses.
Therefore, support programs should be tailored
to the needs of the caregiver at various stages of
caregiving. Programs can respond by offering

services and information geared to different
Where Are People with
stages of the disease. Alzheimers Disease Cared For?
Traditions and attitudes about caregiving
vary across cultural groups. For example, some Home
researchers have found that African-American Assisted living facilities (those in the early stages)
caregivers use fewer formal in-home services than Adult day care centers
do white caretakers. Some populations may nd Nursing homes
it difcult to publicly admit that a family member Special care units
has AD and may be reluctant to seek help with
caregiving issues. Therefore, programs and services
for caregivers must be culturally appropriate and
sensitive to factors that positively and negatively
inuence caregivers attitudes and ability to carry ones, made life easier for them, improved their
out their responsibilities. caregiving ability, improved the care recipients
Use of multiple types of support over an life, and helped them keep their loved one at
extended period of time helps caregivers. For home.
example, the Resources for Enhancing Alzheimers Developing ways to help caregivers become
Caregiver Health (REACH) clinical trial showed educated about AD, improve exibility in
that caregivers who received 6 months of inten- responding to caregiving demands, and learn a
sive help with caregiving strategies had signicant variety of practical strategies can help. Studies
improvements in overall quality of life. They also are teaching caregivers how to read the emotional
had lower rates of clinical depression compared to and physical cues of the person with AD and to
caregivers who did not participate in the program. understand the sequence of events that often
The caregiving strategies included information leads to inappropriate behaviors. They are also
sharing, instruction, role plays, problem-solving, helping caregivers respond to the needs of the
skills training, stress-management techniques, and person with AD in a variety of creative ways,
telephone support groups. Caregivers reported such as maintaining exibility in the face of
that taking part in REACH helped them feel many demands, becoming educated about the
more condent in working with their loved disease, learning practical strategies, using available
For Information About AD Support Groups

To nd out whether an AD support group is operating in your area, contact:
NIAs Alzheimers Disease Education and Referral (ADEAR) Center at 800-438-4380 or
visit www.nia.nih.gov/Alzheimers/ResearchInformation/ResearchCenters
Alzheimers Association at 800-272-3900 or visit www.alz.org

resources, involving other family members and

friends, and balancing the needs of the person
with their own needs.
Helping caregivers deal with the complicated
issue of whether and when to place a loved one
in a nursing home is an important aspect of
caregiver support. People with dementia are
at much greater risk of nursing home placement
than are other older people of the same age.
Placing a loved one in a nursing home may relieve
some of the burden of caregiving, but it does not
necessarily reduce caregiver stress or emotional
distress. Moreover, nursing home costs now Helping caregivers stay physically active has
average more than $70,000 per year. big benets. Researchers have found that regular
One clinical trial tested the effects of an moderate exercise is an important stress reliever for
enhanced counseling and support program on caregivers. Exercise helps to reduce blood pressure
nursing home placement and caregiver health. increases due to stress, improves sleep quality, and
This program for caregivers consisted of six sessions reduces psychological distress and depression.
of individual and family counseling, support
group participation, and on-demand telephone EARLY-STAGE AD SUPPORT GROUPS:
counseling. Participants in the program were able A VITAL SOURCE OF HELP
to delay placement of their loved ones in nursing For families and friends who care for a person with
homes by about 18 months. Researchers attributed AD, talking with others who are going through the
the effects of the program to greater tolerance for same experience can be a vital lifeline. AD support
memory and behavior problems in the person with groups provide a place where caregivers can seek
AD, improved satisfaction with the support respite, express concerns, share experiences, get
provided by family and friends, and fewer tips, and receive emotional comfort. NIA-funded
symptoms of depression. Moreover, it appears Alzheimers Disease Centers, the Alzheimers
that the extra time at home did not come at the Association, and many other organizations sponsor
expense of the caregivers sense of well-being. in-person and online AD support groups all
around the country.
Improved diagnostic tests and increasing aware-
ness of AD mean that more and more people are
now being diagnosed at early stages of AD. People

in the early stages often still have good coping separate groups; in others, people with AD and
skills and are intensely aware of themselves and their caregivers are together for part of the session
their symptoms. They also may feel considerable and apart for the remainder.
distress, embarrassment, and isolation because of a Other types of early-stage support groups are
perceived stigma associated with the disease. As a less structured. Members discuss topics of their
result, a growing number of people with early-stage own choosing, and the groups meet regularly over
AD and their family members are looking for cop- an extended time. Members with AD may stay in
ing strategies, meaningful activities, and mental the group as long as they are able to meaningfully
stimulation. They are eager to educate themselves take part in the discussion and activities.
about AD, share common experiences, and break Early-stage support groups are not for everyone.
the potential barriers and isolation caused by their Some people with early AD and their families may
diagnosis. This has led to the formation of early- not benet because of family conict, denial, cogni-
stage support groups specically designed to meet tive impairment, or discomfort with the intimacy
their needs. of a group experience. However, most participants
Some early-stage support groups follow a report positive outcomes, such as a greater sense
structured model, with 1- to 2-hour sessions of control over their lives and feelings that they
scheduled over 6 to 8 weeks. The sessions are are not alone. Many participants nd early-stage
led by a facilitator and discussion topics are support groups helpful because they instill a spirit
determined in advance. Guest speakers provide of camaraderie, build coping skills, and forge
information and help on specic topics such as relationships and emotional support that continue
legal and nancial planning. In some programs, to help the person with AD and the caregiver even
the person with AD and the caregiver meet in after the sessions end.
What Happens Next?

It is a question many people and their families ask when AD is rst diagnosed.
Members of an early-stage support group at the Northwestern University Alzheimers
Disease Center in Chicago wrote What Happens Next? to help people with early-
stage dementia cope with their feelings and the practical aspects of everyday life.
For a free copy, call the Alzheimers Disease Education and Referral (ADEAR)
Center at 800-438-4380 or visit www.nia.nih.gov/Alzheimers/Publications/
WhatHappensNext.htm.
A L Z HE I M ERS D I S EA SE Unraveling the Mystery 67

Taking Care of Mom or Dad at a Distance
T aking care of a parent with AD who lives

hundreds of miles away is a real worry facing
many adults. How can we make sure Mom gets the
brothers decided to see whether videoconferencing
could be a way to keep in touch with her. They in-
stalled a computer with a video camera in her home so
best care possible if were not there all the time? they could check on her daily, helping fulll her wish to
What can I do to help Dad live at home for as long continue living independently on the family farm while
as possible? assuring themselves that she was faring well.
That was the dilemma facing Ken Nixon and his We had a need, and we patched the system
two brothers in 2001. Their mother lived in an Arkan- together at rst, says Ken. It exceeded our
sas farming community and wanted to stay there. Ken expectations in being able to keep our mother
and his brothers lived 3 to 5 hours awayclose, but independent and connected to the family. We could
not close enough. call and have coffee with her every morning, and it
With funding from NIA, Ken and his brothers got her day started off right. She had something to
created a multi-purpose, Internet-based system called look forward to every dayone or two of her boys
AttentiveCare that is currently available to others faced was going to visit.
with the same long-distance caregiving challenges. After 6 months of using the home-grown system,
Back in 2001, broadband Internet service had just Nixon decided to develop it to help other caregivers.
become available in their mothers community, so the In 2003, he applied for and received a grant from
NIA to rene the AttentiveCare prototype and test its
feasibility in providing informal, long-distance care to
people with AD.
He later received another grant to evaluate the
software, services, and caregiver usage and benets
of the system in a variety of caregiving situations. The
participants in this study are distance caregivers of
persons with early- to moderate-stage AD who had
the AttentiveCare system installed in their own homes
and the homes of their family members with AD.
AttentiveCare now features videoconferencing,
multimedia reminders to help care recipients function
independently, and slide shows to keep care recipi-
ents connected with family. The systems journal and
data logging capability also allows family caregivers
to maintain and share information about the care
Ken Nixon and his grandson use AttentiveCare to recipients health and well-being, whether they are
check in with Kens mother. across the street or thousands of miles away.

Conclusion
T
he future builds upon the events and
experiences of the past. Thats certainly true
of AD research. Our knowledge of AD is
advancing rapidly, and we have much to
celebrate in our scientic successes.
At the same time, we cannot forget that AD remains
an urgent problem for our Nation. The challenge is
to continue building on these discoveries so that we
can create a brighter future in which the potential of
successfully managing AD or even preventing this
terrible disease can become a reality.
Glossary
Acetylcholinea neurotransmitter that plays Axonthe long extension from a neuron that
an important role in many neurological functions, transmits outgoing signals to other cells.
including learning and memory.
Beta-amyloida part of the amyloid precursor
Amygdalaan almond-shaped structure protein found in plaques, the insoluble deposits
involved in processing and remembering strong outside neurons.
emotions such as fear. It is part of the limbic
Brain-derived neurotrophic factor
system and located deep inside the brain.
(BDNF)a growth factor that stimulates survival,
Amyloid plaquea largely insoluble growth, and adaptability of some neurons.
deposit found in the space between nerve cells
Brain stemthe portion of the brain that
in the brain. Plaques are made of beta-amyloid,
connects to the spinal cord and controls automatic
other molecules, and different kinds of nerve
body functions, such as breathing, heart rate, and
and non-nerve cells.
blood pressure.
Amyloid precursor protein (APP)the
Capillarya tiny blood vessel. The brain has
larger protein from which beta-amyloid is formed.
billions of capillaries that carry oxygen, glucose
Apolipoprotein Ea protein that carries (the brains principal source of energy), nutrients,
cholesterol in blood and that appears to play some and hormones to brain cells so they can do their
role in brain function. The gene that produces this work. Capillaries also carry away carbon dioxide
protein comes in several forms, or alleles: 2, 3, and cell waste products.
and 4. The APOE 2 allele is relatively rare and
Cerebellumthe part of the brain
may provide some protection against AD (but it
responsible for maintaining the bodys balance
may increase risk of early heart disease). APOE
and coordination.
3 is the most common allele and appears to play
a neutral role in AD. APOE 4 occurs in about Cerebral cortexthe outer layer of nerve cells
40 percent of all people with AD who develop surrounding the cerebral hemispheres.
the disease in later life; it increases the risk of
Cerebral hemispheresthe largest
developing AD.
portion of the brain, composed of billions of
nerve cells in two structures connected by the
corpus callosum. The cerebral hemispheres control
conscious thought, language, decision making,
emotions, movement, and sensory functions.

Cerebrospinal uidthe uid found in DNA (deoxyribonucleic acid)a long,
and around the brain and spinal cord. It protects double-stranded molecule within the nucleus of
these organs by acting like a liquid cushion and the cell that forms chromosomes and genes.
by providing nutrients.
Early-onset Alzheimers diseasea rare
Chromosomea threadlike structure in form of AD that usually affects people between
the nucleus of a cell that contains DNA. DNA ages 30 and 60. It is called familial AD (FAD) if it
sequences make up genes. Most human cells runs in the family.
have 23 pairs of chromosomes containing
Entorhinal cortexan area deep within the
approximately 30,000 genes.
brain where damage from AD often begins.
Clinical triala research study involving
Enzymea protein that causes or speeds up a
humans that rigorously tests safety, side effects,
biochemical reaction.
and how well a medication or behavioral
treatment works. Free radicala highly reactive molecule
(typically oxygen or nitrogen) that combines
Cognitive functionsall aspects of conscious
easily with other molecules because it contains an
thought and mental activity, including learning,
unpaired electron. The combination with other
perceiving, making decisions, and remembering.
molecules sometimes damages cells.
Computed tomography (CT) scan
Genethe biologic unit of heredity passed from
a diagnostic procedure that uses special x-ray
parent to child. Genes are segments of DNA and
equipment and computers to create cross-sectional
contain instructions that tell a cell how to make
pictures of the body.
specic proteins.
Corpus callosumthick bundles of nerve cell
Genetic risk factora variant in a cells
bers that connect the two cerebral hemispheres.
DNA that does not cause a disease by itself but
Dementiaa broad term referring to a decline may increase the chance that a person will
in cognitive function to the extent that it interferes develop a disease.
with daily life and activities.
Dendritea branch-like extension of a neuron
that receives messages from other neurons.

Glossary
Glial cella specialized cell that supports, release energy. In others, the cells use energy to
protects, or nourishes nerve cells. make complex compounds out of simpler ones
(like making proteins from amino acids).
Hippocampusa structure in the brain that
plays a major role in learning and memory and is Microtubulean internal support structure for
involved in converting short-term to long-term a neuron that guides nutrients and molecules from
memory. the body of the cell to the end of the axon.
Hypothalamusa structure in the brain Mild cognitive impairment (MCI)
under the thalamus that monitors activities such a condition in which a person has memory
as body temperature and food intake. problems greater than those expected for his or
her age, but not the personality or cognitive
Late-onset Alzheimers diseasethe
problems that characterize AD.
most common form of AD. It occurs in people
aged 60 and older. Mutationa permanent change in a cells DNA
that can cause a disease.
Limbic systema brain region that links
the brain stem with the higher reasoning elements Myelina whitish, fatty layer surrounding
of the cerebral cortex. It controls emotions, an axon that helps the axon rapidly transmit
instinctive behavior, and the sense of smell. electrical messages from the cell body to the
synapse.
Magnetic resonance imaging (MRI)
a diagnostic and research technique that uses Nerve growth factor (NGF)a substance
magnetic elds to generate a computer image of that maintains the health of nerve cells. NGF also
internal structures in the body. MRIs are very clear promotes the growth of axons and dendrites, the
and are particularly good for imaging the brain parts of the nerve cell that are essential to its ability
and soft tissues. to communicate with other nerve cells.
Metabolismall of the chemical processes Neurodegenerative diseasea disease
that take place inside the body. In some metabolic characterized by a progressive decline in the
reactions, complex molecules are broken down to structure, activity, and function of brain tissue.
These diseases include AD, Parkinsons disease,
frontotemporal lobar degeneration, and dementia
with Lewy bodies. They are usually more
common in older people.

Neurobrillary tanglea lamentous Synapsethe tiny gap between nerve cells
collection of twisted and hyperphosphorylated tau across which neurotransmitters pass.
found in the cell body of a neuron in AD.
Taua protein that helps to maintain the
Neurona nerve cell. structure of microtubules in normal nerve cells.
Abnormal tau is a principal component of the
Neurotransmittera chemical messenger
paired helical laments in neurobrillary tangles.
between neurons. These substances are released by
the axon on one neuron and excite or inhibit Thalamusa small structure in the front of the
activity in a neighboring neuron. cerebral hemispheres that serves as a way station
that receives sensory information of all kinds and
Nucleusthe structure within a cell that
relays it to the cortex; it also receives information
contains the chromosomes and controls many
from the cortex.
of its activities.
Transgenican animal that has had a gene
Oxidative damagedamage that can occur
(like human APP) inserted into its chromosomes.
to cells when they are exposed to too many free
Mice carrying the mutated human APP gene often
radicals.
develop plaques in their brains as they age.
Positron emission tomography (PET)
Ventriclea cavity within the brain that is
an imaging technique using radioisotopes that
lled with cerebrospinal uid.
allows researchers to observe and measure activity
in different parts of the brain by monitoring blood Vesiclea small container for transporting
ow and concentrations of substances such as neurotransmitters and other molecules from one
oxygen and glucose, as well as other specic part of the neuron to another.
constituents of brain tissues.
Single photon emission computed
tomography (SPECT)an imaging technique
that allows researchers to monitor blood ow to
different parts of the brain.

For
More
Information
INFORMATION AND referrals to local resources and services and spon-
SUPPORT RESOURCES sor support groups and educational programs.
Online and print publications are also available.
Alzheimers Disease Education
and Referral (ADEAR) Center The Association also funds AD research.
P.O. Box 8250
Alzheimers Foundation of America
Silver Spring, MD 20907-8250
322 Eighth Avenue, 7th Floor
800-438-4380 (toll-free)
New York, NY 10001
www.nia.nih.gov/Alzheimers
866-232-8484 (toll-free)
This service of the National Institute on Aging www.alzfdn.org
(NIA) offers information and publications on
The Alzheimers Foundation of America provides
diagnosis, treatment, patient care, caregiver
care and services to individuals confronting
needs, long-term care, education and training,
dementia and to their caregivers and families,
and research related to Alzheimers disease. Staff
through member organizations dedicated to
members answer telephone, email, and written
improving quality of life. Services include a
requests and make referrals to local and national
toll-free hotline, consumer publications and
resources. The ADEAR website offers free, online
other educational materials, and conferences and
publications in English and Spanish; email alerts
workshops.
and online Connections newsletter registration;
an AD clinical trials database; the AD Library
Dana Alliance for Brain Initiatives
database; and more.
745 Fifth Avenue, Suite 900
New York, NY 10151
Alzheimers Association
212-223-4040
225 North Michigan Avenue, Suite 1700
www.dana.org/danaalliances
Chicago, IL 60601-7633
800-272-3900 (toll-free) The Dana Alliance for Brain Initiatives, a non-
www.alz.org prot organization of more than 265 leading
neuroscientists, helps advance public awareness
The Alzheimers Association is a national,
about the progress and promise of brain research
non-prot organization with a network of
and disseminates information about the brain.
local chapters that provide education and
support for people diagnosed with AD, their
families, and caregivers. Chapters offer

CAREGIVING SUPPORT AND SERVICES National Family
Caregivers Association
Children of Aging Parents
10400 Connecticut Avenue, Suite 500
P.O. Box 167
Kensington, MD 20895-3944
Richboro, PA 18954-0167
800-896-3650 (toll-free)
800-227-7294 (toll-free)
301-942-6430
www.caps4caregivers.org
www.thefamilycaregiver.org
This nonprot organization provides information
The National Family Caregivers Association helps
and referrals for nursing homes, retirement
educate and support people who care for loved
communities, elder-law attorneys, adult day-care
ones with chronic illness, disability, or the frailties
centers, insurance providers, respite care, assisted
of old age. The Association offers an online library
living centers, support groups, and State and
of information and educational materials, work-
county agencies. It also offers fact sheets, a news-
shops, and other resources.
letter, and conferences and workshops.
National Hospice and
Eldercare Locator
Palliative Care Organization
800-677-1116 (toll-free)
1700 Diagonal Road, Suite 625
www.eldercare.gov
Alexandria, VA 22314
Eldercare Locator is a nationwide, directory- 800-658-8898 (toll-free)
assistance service helping older people and their www.nhpco.org
caregivers locate local support and resources. It is
This nonprot organization works to enhance the
funded by the U.S. Administration on Aging, whose
quality of life for people who are terminally ill. It
website at www.aoa.gov also features AD information
provides information, resources, and referrals to
for families, caregivers, and health professionals.
local hospice services, and offers publications and
online resources.
Family Caregiver Alliance
180 Montgomery Street, Suite 1100
Well Spouse Association
San Francisco, CA 94104
63 West Main Street, Suite H
800-445-8106 (toll-free)
Freehold, NJ 07728
www.caregiver.org
800-838-0879 (toll-free)
The Family Caregiver Alliance is a nonprot www.wellspouse.org
organization that offers support services and
The nonprot Well Spouse Association gives
information for people caring for adults with
support to spouses and partners of people who are
AD, stroke, traumatic brain injuries, and
chronically ill and/or disabled. It offers support
other cognitive disorders.
groups and a newsletter.

More
For
Information
RESEARCH AND CLINICAL TRIALS RECOMMENDED READING

Alzheimers Disease Cooperative Study The ADEAR Center offers fact sheets; easy-to-
University of California, San Diego read materials; booklets about topics such as being
9500 Gilman Drive diagnosed with early-stage AD, caregiving, home
La Jolla, CA 92093-0949 safety, and comfort and care at the end of life;
858-622-5880 and more. See the ADEAR Center listing under
www.adcs.org Information and Support Resources above for
contact information.
The Alzheimers Disease Cooperative Study
(ADCS) is a cooperative agreement between NIA Consumers and professionals interested in AD also
and the University of California, San Diego, to may wish to refer to the following materials:
advance research in the development of drugs to
treat AD. The ADCS is a consortium of medical
Ballard, E.L., & Poer, C.M. Lessons Learned:
research centers and clinics working to develop
Shared Experiences in Coping. Durham, NC:
clinical trials of medicines to treat behavioral
The Duke Family Support Program, 1999.
symptoms of AD, improve cognition, slow the rate
Available for $7 from the ADEAR Center,
of decline caused by AD, delay the onset of AD,
P.O. Box 8250, Silver Spring, MD 20907-8250;
or prevent the disease altogether. The ADCS also
800-438-4380; www.nia.nih.gov/Alzheimers.
develops new and more reliable ways to evaluate
This book documents the experiences of people
patients enrolled in clinical trials.
caring for loved ones with AD. Filled with short
stories and advice, it is intended for caregivers
Alzheimer Research Forum
who wish to take comfort and learn from the
www.alzforum.org
experiences of others. Caregivers discuss the
The Alzheimer Research Forum, an online com- caregiving process, such as getting a diagnosis,
munity and resource center, offers professionals and nding support services, making decisions about
the general public access to an annotated index of treatment and living arrangements, and coping
scientic papers, research news, moderated discus- with stress and caregiver burden.
sions on scientic topics, libraries of animal models
and antibodies, and directories of clinical trials,
Dash, P., & Villemarette-Pittman, N. Alzheimers
conferences, jobs, and research-funding sources.
Disease. New York: American Academy of
ClinicalTrials.gov Neurology, 2005.
www.ClinicalTrials.gov This concise volume provides an overview of
ClinicalTrials.gov is a registry of federally and recent ndings regarding the causes, diagnosis, and
privately supported clinical trials conducted in the treatment of AD. It is designed to help caregivers
United States and around the world. Users can and family members gain a better understanding
search for clinical trials and nd information
about each trials purpose, who may participate,
locations, and phone numbers for more details.

of AD and the available options for coping Mace, N.L., & Rabins, P.V. The 36-Hour Day:
with and managing this illness. Sixteen chapters A Family Guide to Caring for People With
answer questions about topics such as the Alzheimers Disease, Other Dementias, and
denition of AD and dementia, AD versus other Memory Loss in Later Life, 4th ed. Baltimore:
causes of dementia, treatments for behavioral Johns Hopkins University Press, 2006.
symptoms and other complications of AD,
This book offers guidance and comfort for families
and practical issues for the patient and family.
caring for loved ones with AD, other dementias,
Illustrations, a glossary, and a list of resources
and memory loss in later life. The fourth edition
are also included.
includes chapters on topics such as getting
medical help for the person with dementia,
Doraiswamy, P.M., & Gwyther, L., with Adler, behavioral symptoms of dementia, nursing homes
T. The Alzheimers Action Plan: The Experts and other living arrangements, and research in
Guide to the Best Diagnosis and Treatment for dementia. New information discusses diagnostic
Memory Problems. New York: St. Martins Press, evaluation, caregiver resources, legal and
2008. nancial information, nursing homes and other
communal living arrangements, and the latest
This book, by a physician and social worker at
updates on research, medications, and the
Duke University, offers information about how to
biological causes and effects of dementia.
get an early and accurate AD diagnosis and why
Available in a large-print version.
it matters, life after the diagnosis, state-of-the-art
treatments, coping with behavioral and emotional
changes through the early and middle stages of Messer, M. Pressure Points: Alzheimers and
AD, accessing the latest clinical trials, and Anger. Durham, NC: Duke Family Support
understanding the future of AD. Program, 2000. Available for $12.50 from the
ADEAR Center, P.O. Box 8250, Silver Spring,
MD 20907-8250; 800-438-4380; www.nia.nih.
Kuhn, D., & Bennett, D.A. Alzheimers Early
gov/Alzheimers.
Stages: First Steps for Family, Friends and
Caregivers, 2nd ed. Alameda, CA: Hunter House In simple, easy-to-read language, this book
Publishers, 2003. addresses issues such as setting boundaries,
managing anger positively, and risk factors for
With increased awareness of the symptoms of AD
anger in AD care. It offers tangible action steps for
and improved diagnostic techniques, more people
responding appropriately, rather than abusively,
are learning that they or a family member have a
memory disorder. This book, written by experts
at Rush University Alzheimers Disease Center in
Chicago, helps readers understand and nd ways
to cope with the early stages of the disease. It also
includes an extensive resource list of websites,
organizations, and references to consumer and
professional literature.

More
For
Information
when feeling angry. Participants in Alzheimers Petersen, R., ed. Mayo Clinic Guide to
support groups share helpful techniques and Alzheimers Disease: The Essential Resource for
coping mechanisms, as well as enlightening Treatment, Coping and Caregiving. Rochester,
anecdotes about caring for a loved one with AD. MN: Mayo Clinic Health Solutions, 2006.
Caregivers, family members of AD patients,
This guide is designed to help nonprofessionals
clergy, and health professionals all may benet
understand dementia and its effects on the mind,
from this publication. Two companion
the differences between dementia and changes
booklets are also available from the ADEAR
associated with normal aging, and how to improve
Center: Hit Pause: Helping Dementia Families
memory and maintain good mental function. It
Deal with Anger (for health professionals; $3.00)
includes information about changes that occur in
and Wait a Minute! When Anger Gets Too Much
normal aging; the process of diagnosing dementia;
(for families and caregivers; $2.00).
non-AD forms of dementia; how AD develops,
and AD stages, diagnosis, and treatment. New
Perry, G., ed., Alzheimers Disease: A Century information about mild cognitive impairment,
of Scientic and Clinical Research. Journal of ways to stay mentally sharp, and research trends,
Alzheimers Disease, book edition, Fairfax, VA: IOS along with an action guide for caregivers, are
Press, Inc., 2006. also included.
This volume brings together the important
discoveries in the AD eld since the diseases
original description by Dr. Alois Alzheimer a
century ago. It traces how the importance of AD
as the major cause of late-life dementia came to
light and narrates the evolution of the concepts
related to AD throughout the years. Fifty papers
are organized into sections on historical
perspective, neuropathology, synaptic changes,
amyloid, tau, disease mechanisms, genetics, and
diagnosis and treatment.

Restak, R. The Secret Life of the Brain. Tanzi, R.E., & Sisodia, S.S. Alzheimers Disease:
Washington, DC: Joseph Henry Press, 2001. Advances in Genetics, Molecular and Cellular
Biology. New York: Springer Publishing Company,
This companion to the PBS documentary takes
2006.
the reader on a fascinating journey through the
developing brain, from infancy and childhood This book examines every major aspect of AD
through adulthood and old age. The author ex- clinical, epidemiologic, structural, chemical,
amines brain disorders and mechanisms of brain genetic, molecular, and therapeutic. This edition
repair and healing. includes expanded coverage of related dementing
disorders, including prion diseases, Picks disease,
frontotemporal disorders, an in-depth discussion
Shenk, D. The Forgetting. Alzheimers: Portrait
of transgenic models, and the biochemistry
of an Epidemic. New York: Random House, Inc.,
of presenilins. It also discusses treatment of
2003.
symptoms with therapeutic drugs and AD clini-
An eloquent and moving description of AD, The cal trials. The broad coverage of AD in this book
Forgetting is an exploration of, and meditation on, will be of special interest to clinicians, educators,
the nature of memory and perceptions of self. It investigators, and health administrators.
is a readable, accessible description of the history
of AD, research, and the human impact of the
Uetz, D., & Lindsay, A. Into the Mist:
disease. Calling AD a death by a thousand
When Someone You Love Has Alzheimers.
subtractions, the author describes the science
Philadelphia: Xlibris Corporation, 2005.
of AD in clear and easy-to-understand terms.
This book combines information from
researchers, experts, and families in a
Snowdon, D. Aging With Grace: What the
comprehensive guide for AD caregivers. It
Nun Study Teaches Us About Leading Longer,
offers personal accounts of three families caring
Healthier, and More Meaningful Lives. New
for a loved one from the earliest stages to the
York: Random House, Inc., 2002.
last stages, illustrating the commonalities and
This book describes the participants and ndings differences among AD patients and the ways their
from the Nun Study, a long-term project examin- families handle the most difcult challenges. It
ing aging and AD in a unique population of 678 also provides information to help families cope
Catholic sisters. The nuns gave Dr. Snowdon with the psychological aspects of AD, behavior
access to their medical and personal records and problems, and communication difculties. The
agreed to donate their brains upon death. The book covers such topics as the stages of AD,
book discusses the relationship of early linguistic Medicare, Medicaid, long-term care insurance,
ability to risk of AD, the association of stroke and geriatric care management, the diagnosis of AD,
depression with AD, and the role of heredity and causes and prevention, and drug treatments.
lifestyle in healthy aging.

Credits
Writer Photography
Anne Brown Rodgers Front Cover Doug Sanford, Photogroup
Inside front cover, page 8, 55 Blend Images
Medical Illustrator
Page 1 Blend Stock
Stacy Jannis
Jannis Productions Pages 9, 19, 39, 61 Photodisc
Page 13 Dynamic Graphics; scans on computer
3D Modeling screen courtesy of William Jagust, M.D., University of
Bill Dempsey California, Berkeley
Rebekah Fredenburg Page 16 Fancy Photography
Page 20 Comstock
Graphic Design
Fatima Ameen and Jeffrey Dever Page 28 University of Pittsburgh
Dever Designs Page 33 Cognitive Neurology and Alzheimers Disease
Center, Northwestern University
Project Coordinator Page 34, back cover Thinkstock
Susan R. Farrer
JBS International, Inc. Pages 36, 62 Corbis
Page 43 Berislav Zlokovic, M.D., Ph.D., University of
Special Thanks Rochester, and Stacy Jannis, Jannis Productions
NIA appreciates the extraordinary contributions Page 45 Pixland Stock
of the following people to the vision and creation
of this book: Page 46, inside back cover Brand X Pictures
Marcelle Morrison-Bogorad, Ph.D., and the staff Page 51 Jeff Miller, University of Wisconsin-Madison
of the NIA Division of Neuroscience Page 53 Oregon Center for Aging and Technology,
Patricia D. Lynch, former senior public affairs Oregon Health & Science University
specialist, NIA Ofce of Communications and Page 57 Plainpicture Photography
Public Liaison Page 58 Digital Vision
David M. Burton, JBS International, Inc. Page 64 Alloy Photography
Page 66 Marty Katz
Page 68 Caregiver Technologies, Inc.
Page 69 Flirt Photography
Page 78 Stockbyte
80 ALZHEIMERS DISEASE Unraveling the Mystery

For additional copies of this
report or further information about
Alzheimers disease, please contact:
Alzheimers Disease Education
and Referral (ADEAR) Center
P.O. Box 8250
Phone:
800-438-4380
Email:
adear@nia.nih.gov
Website:
U.S. Department of
Health and Human Services
NIH Publication Number: 08-3782
September 2008
TABLE OF CONTENTS
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
What Is Alzheimers Disease? . . . . . . . . . . . . . . . . . . 2
What Are the Symptoms of Alzheimers Disease?. . . 3
General Safety Concerns . . . . . . . . . . . . . . . . . . . . . . 4
Is It Safe to Leave the Person with Alzheimers

Disease Alone?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Home Safety Room by Room . . . . . . . . . . . . . . . . . . . 7
Home Safety Behavior by Behavior. . . . . . . . . . . . . 18
Special Occasions/Gatherings/Holidays . . . . . . . . . 23
Impairment of the Senses. . . . . . . . . . . . . . . . . . . . . 25
Driving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28
Warning Signs of Unsafe Driving. . . . . . . . . . . . . . . 31
Natural Disaster Safety. . . . . . . . . . . . . . . . . . . . . . . 32
Who Would Take Care of the Person with

Alzheimers If Something Happened to You?. . . . . . 34
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
Additional Resources . . . . . . . . . . . . . . . . . . . . . . . . 37
Home Safety for People with Alzheimers Disease
Introduction
Caring for a person with Alzheimers disease is a challenge that
calls upon the patience, creativity, knowledge, and skills of each
caregiver. We hope that this booklet will help you cope with some
of these challenges and develop creative solutions to increase
the security and freedom of the person with Alzheimers in your
home, as well as your own peace of mind.
This booklet is for those who provide in-home care for people
with Alzheimers disease or related disorders. Our goal is to
improve home safety by identifying potential problems in the
home and offering possible solutions to help prevent accidents.
We begin with a checklist to help you make each room in your

home a safer environment for the person with Alzheimers. Next,
we hope to increase awareness of the ways specific impairments
associated with the disease can create particular safety hazards
in the home. Home safety tips are listed to help you cope with
some of the more hazardous behaviors that may occur as the
disease advances. We also include tips for managing driving and
planning for natural disaster safety. The booklet ends with a list of
resources for family caregivers.
page 1
What Is Alzheimers Disease?

Alzheimers disease is a progressive, irreversible brain disease
that slowly destroys memory and thinking skills. Estimates vary,
but experts suggest that as many as 5.1 million Americans have
the disease, which affects people of all racial, economic, and
educational backgrounds. Although Alzheimers primarily affects
people age 60 or older, it also may affect people in their 50s and,
rarely, even younger.
Alzheimers disease is the most common cause of dementia in

adults. Dementia is a loss of memory and intellect that interferes
with daily life and activities. Dementia is not a disease; rather,
it is a group of symptoms that may accompany certain diseases
and conditions. Other symptoms include changes in personality,
mood, or behavior.
Other causes of irreversible dementia include vascular dementia

and alcohol abuse. The recommendations in this booklet deal
primarily with common problems in Alzheimers, but they also
may be helpful for people with other types of dementia.
page 2
What Are the Symptoms of Alzheimers Disease?

There is no typical person with Alzheimers disease. There is
tremendous variability among people with Alzheimers in their
behaviors and symptoms. At present, there is no way to predict
how quickly the disease will progress in any one person or the
exact changes that will occur. We do know, however, that many
of these changes will present problems for caregivers. Therefore,
knowledge and prevention are critical to safety.
People with Alzheimers disease have memory problems and

cognitive impairment (difficulties with thinking and reasoning),
and eventually they will not be able to care for themselves. They
often experience confusion, loss of judgment, and difficulty
finding words, finishing thoughts, or following directions. They
also may experience personality and behavior changes. For
example, they may become agitated, irritable, or very passive.
Some people with Alzheimers wander from home and become
lost. Others may not be able to tell the difference between day
and nightthey may wake up, get dressed, and start to leave the
house in the middle of the night, thinking that the day has just
started. People with Alzheimers also can have losses that affect
vision, smell, or taste.
These disabilities are very difficult, not only for the person with
Alzheimers, but for the caregiver, family, and other loved ones
as well. Caregivers need resources and reassurance to know that
while the challenges are great, specific actions can reduce some
of the safety concerns that accompany Alzheimers disease.
page 3
General Safety Concerns

People with Alzheimers disease become increasingly unable
to take care of themselves. However, the disease progresses
differently in each person. As a caregiver, you face the ongoing
challenge of adapting to each change in the persons behavior and
functioning. The following general principles may be helpful.
1. Think prevention. It is very difficult to predict what a person

with Alzheimers might do. Just because something has not
yet occurred does not mean it should not be cause for concern.
Even with the best-laid plans, accidents can happen. Therefore,
checking the safety of your home will help you take control
of some of the potential problems that may create hazardous
situations.
2. Adapt the environment. It is more effective to change

the environment than to change most behaviors. While some
Alzheimers behaviors can be managed with special medications
prescribed by a doctor, many cannot. You can make changes in an
environment to decrease the hazards and stressors that accompany
these behavioral and functional changes.
3. Minimize danger. By minimizing danger, you can maximize

independence. A safe environment can be a less restrictive
environment where the person with Alzheimers disease can
experience increased security and more mobility.
page 4
Is It Safe to Leave the Person with

Alzheimers Disease Alone?
This issue needs careful evaluation and is certainly a safety
concern. The following points may help you decide.
Does the person with Alzheimers:

v become confused or unpredictable under stress?
v recognize a dangerous situation, such as fire?
v know how to use the telephone in an emergency?
v know how to get help?
v stay content within the home?
v wander and become disoriented?
v show signs of agitation, depression, or withdrawal when
left alone for any period of time?
v attempt to pursue former interests or hobbies that might
now warrant supervision, such as cooking, appliance
repair, or woodworking?
You may want to seek input and advice from a health

care professional to assist you in these considerations. As
Alzheimers disease progresses, these questions will need
ongoing evaluation.
page 5
Home Safety Room by Room

Prevention begins with a safety check of every room in your
home. Use the following room-by-room checklist to alert you to
potential hazards and to record any changes you need to make.
You can buy products or gadgets necessary for home safety at
stores carrying hardware, electronics, medical supplies, and
childrens items.
Keep in mind that it may not be necessary to make all of the

suggested changes. This booklet covers a wide range of safety
concerns that may arise, and some modifications may never be
needed. It is important, however, to re-evaluate home safety
periodically as behavior and abilities change.
Your home is a personal and precious environment. As you go

through this checklist, some of the changes you make may impact
your surroundings positively, and some may affect you in ways
that may be inconvenient or undesirable. It is possible, however,
to strike a balance. Caregivers can make adaptations that modify
and simplify without severely disrupting the home. You may want
to consider setting aside a special area for yourself, a space off-
limits to anyone else and arranged exactly as you like. Everyone
needs private, quiet time, and as a caregiver, this becomes
especially crucial.
A safe home can be a less stressful home for the person with
Alzheimers disease, the caregiver, and family members. You
dont have to make these changes alone. You may want to enlist
the help of a friend, professional, or community service such as
the Alzheimers Association.
page 7
Throughout the Home

w Display emergency numbers and your home address near all
telephones.
w Use an answering machine when you cannot answer phone
calls, and set it to turn on after the fewest number of rings
possible. A person with Alzheimers disease often may be
unable to take messages or could become a victim of telephone
exploitation. Turn ringers on low to avoid distraction and
confusion. Put all portable and cell phones and equipment in a
safe place so they will not be easily lost.
w Install smoke alarms and carbon monoxide detectors in or near
the kitchen and all sleeping areas. Check their functioning and
batteries frequently.
w Avoid the use of flammable and volatile compounds near gas
appliances. Do not store these materials in an area where a gas
pilot light is used.
w Install secure locks on all outside doors and windows.
w Hide a spare house key outside in case the person with
Alzheimers locks you out of the house.
w Avoid the use of extension cords if possible by placing lamps
and appliances close to electrical outlets. Tack extension cords
to the baseboards of a room to avoid tripping.
w Cover unused electrical outlets with childproof plugs.
w Place red tape around floor vents, radiators, and other heating
devices to deter the person with Alzheimers from standing on
or touching them when hot.
w Check all rooms for adequate lighting.
page 8
w Place light switches at the top and the bottom of stairs.

w Stairways should have at least one handrail that extends
beyond the first and last steps. If possible, stairways should be
carpeted or have safety grip strips. Put a gate across the stairs
if the person has balance problems.
w Keep all medications (prescription and over-the-counter)
locked. Each bottle of prescription medicine should be
clearly labeled with the persons name, name of the drug,
drug strength, dosage frequency, and expiration date. Child-
resistant caps are available if needed.
w Keep all alcohol in a locked cabinet or out of reach of the
person with Alzheimers. Drinking alcohol can increase
confusion.
w If smoking is permitted, monitor the person with Alzheimers
while he or she is smoking. Remove matches, lighters,
ashtrays, cigarettes, and other means of smoking from view.
This reduces fire hazards, and with these reminders out
of sight, the person may forget the desire to smoke.
w Avoid clutter, which can create confusion and danger. Throw
out or recycle newspapers and magazines regularly. Keep all
areas where people walk free of furniture.
w Keep plastic bags out of reach. A person with Alzheimers
disease may choke or suffocate.
w Remove all guns and other weapons from the home or lock
them up. Install safety locks on guns or remove ammunition
and firing pins.
w Lock all power tools and machinery in the garage, workroom,
or basement.
page 9
w Remove all poisonous plants from the home. Check with local
nurseries or contact the poison control center (1-800-222-1222)
for a list of poisonous plants.
w Make sure all computer equipment and accessories, including
electrical cords, are kept out of the way. If valuable documents
or materials are stored on a home computer, protect the files
with passwords and back up the files. Password protect access
to the Internet, and restrict the amount of online time without
supervision. Consider monitoring computer use by the person
with Alzheimers, and install software that screens for
objectionable or offensive material on the Internet.
w Keep fish tanks out of reach. The combination of glass, water,
electrical pumps, and potentially poisonous aquatic life could
be harmful to a curious person with Alzheimers disease.
Outside Approaches to the House

w Keep steps sturdy and textured to prevent falls in wet or icy
weather.
w Mark the edges of steps with bright or reflective tape.
w Consider installing a ramp with handrails as an alternative to
steps.
w Eliminate uneven surfaces or walkways, hoses, and other
objects that may cause a person to trip.
w Restrict access to a swimming pool by fencing it with a locked
gate, covering it, and closely supervising it when in use.
w In the patio area, remove the fuel source and fire starters from
any grills when not in use, and supervise use when the person
with Alzheimers is present.
page 10
w Place a small bench or table by the entry door to hold parcels

while unlocking the door.
w Make sure outside lighting is adequate. Light sensors that
turn on lights automatically as you approach the house may
be useful. They also may be used in other parts of the home.
w Prune bushes and foliage well away from walkways and
doorways.
w Consider a NO SOLICITING sign for the front gate or door.
Entryway
w Remove scatter rugs and throw rugs.
w Use textured strips or nonskid wax on hardwood and tile floors
to prevent slipping.
Kitchen
w Install childproof door latches on storage cabinets and drawers
designated for breakable or dangerous items. Lock away all
household cleaning products, matches, knives, scissors, blades,
small appliances, and anything valuable.
w If prescription or nonprescription drugs are kept in the kitchen,
store them in a locked cabinet.
w Remove scatter rugs and foam pads from the floor.
w Install safety knobs and an automatic shut-off switch on the
stove.
w Do not use or store flammable liquids in the kitchen. Lock
them in the garage or in an outside storage unit.
page 11
w Keep a night-light in the kitchen.

w Remove or secure the family junk drawer. A person with
Alzheimers may eat small items such as matches, hardware,
erasers, and plastics.
w Remove artificial fruits and vegetables or food-shaped kitchen
magnets, which might appear to be edible.
w Insert a drain trap in the kitchen sink to catch anything that
may otherwise become lost or clog the plumbing.
w Consider disconnecting the garbage disposal. People with
Alzheimers may place objects or their own hands in the
disposal.
Bedroom
w Anticipate the reasons a person with Alzheimers disease
might get out of bed, such as hunger, thirst, going to the
bathroom, restlessness, and pain. Try to meet these needs by
offering food and fluids and scheduling ample toileting.
w Use a night-light.
w Use a monitoring device (like those used for infants) to alert
you to any sounds indicating a fall or other need for help. This
also is an effective device for bathrooms.
w Remove scatter rugs and throw rugs.
w Remove portable space heaters. If you use portable fans, be
sure that objects cannot be placed in the blades.
w Be cautious when using electric mattress pads, electric
blankets, electric sheets, and heating pads, all of which can
cause burns and fires. Keep controls out of reach.
page 12
w If the person with Alzheimers disease is at risk of falling out

of bed, place mats next to the bed, as long as they do not create
a greater risk of accident.
w Use transfer or mobility aids.
w If you are considering using a hospital-type bed with rails and/
or wheels, read the Food and Drug Administrations up-to-date
safety information at www.fda.gov/cdrh/beds.
Bathroom
w Do not leave a severely impaired person with Alzheimers
alone in the bathroom.
w Remove the lock from the bathroom door to prevent the person
with Alzheimers from getting locked inside.
w Place nonskid adhesive strips, decals, or mats in the tub and
shower. If the bathroom is uncarpeted, consider placing these
strips next to the tub, toilet, and sink.
w Use washable wall-to-wall bathroom carpeting to prevent
slipping on wet tile floors.
w Use a raised toilet seat with handrails, or install grab bars
beside the toilet.
w Install grab bars in the tub/shower. A grab bar in contrasting
color to the wall is easier to see.
w Use a foam rubber faucet cover (often used for small children)
in the tub to prevent serious injury should the person with
Alzheimers disease fall.
page 13
w Use a plastic shower stool and a handheld shower head to

make bathing easier.
w In the shower, tub, and sink, use a single faucet that mixes hot
and cold water to avoid burns.
w Set the water heater at 120 degrees Fahrenheit to avoid
scalding tap water.
w Insert drain traps in sinks to catch small items that may be lost
or flushed down the drain.
w Store medications (prescription and nonprescription) in a
locked cabinet. Check medication dates and throw away
outdated medications.
w Remove cleaning products from under the sink, or lock
them away.
w Use a night-light.
w Remove small electrical appliances from the bathroom. Cover
electrical outlets.
w If a man with Alzheimers disease uses an use electric razor,
have him use a mirror outside the bathroom to avoid water
contact.
page 14
Living Room
w Clear electrical cords from all areas where people walk.
w Remove scatter rugs and throw rugs. Repair or replace torn
carpet.
w Place decals at eye level on sliding glass doors, picture
windows, and furniture with large glass panels to identify the
glass pane.
w Do not leave the person with Alzheimers disease alone with
an open fire in the fireplace. Consider alternative heating
sources.
w Keep matches and cigarette lighters out of reach.
w Keep the remote controls for the television, DVD player, and
stereo system out of sight.
Laundry Room
w Keep the door to the laundry room locked if possible.
w Lock all laundry products in a cabinet.
w Remove large knobs from the washer and dryer if the person
with Alzheimers tampers with machinery.
w Close and latch the doors and lids to the washer and dryer to
prevent objects from being placed in the machines.
page 15
Garage/Shed/Basement
w Lock access to all garages, sheds, and basements if possible.
w Inside a garage or shed, keep all potentially dangerous items,
such as tools, tackle, machines, and sporting equipment, either
locked away in cabinets or in appropriate boxes or cases.
w Secure and lock all motor vehicles and keep them out of sight
if possible. Consider covering vehicles, including bicycles,
that are not frequently used. This may reduce the possibility
that the person with Alzheimers will think about leaving.
w Keep all toxic materials, such as paint, fertilizers, gasoline, or
cleaning supplies, out of view. Either put them in a high, dry
place, or lock them in a cabinet.
w If the person with Alzheimers is permitted in a garage, shed,
or basement, preferably with supervision, make sure the area
is well lit and that stairs have a handrail and are safe to walk
up and down. Keep walkways clear of debris and clutter, and
place overhanging items out of reach.
page 16
Home Safety Behavior by Behavior

Although a number of behavior and sensory problems may
accompany Alzheimers disease, not every person will experience
the disease in exactly the same way. As the disease progresses,
particular behavioral changes can create safety problems. The
person with Alzheimers may or may not have these symptoms.
However, should these behaviors occur, the following safety
recommendations may help reduce risks.
Wandering
w Remove clutter and clear the pathways from room to room to
prevent falls and allow the person with Alzheimers to move
about more freely.
w Make sure floors provide good traction for walking or pacing.
Use nonskid floor wax or leave floors unpolished. Secure
all rug edges, eliminate throw rugs, or install nonskid strips.
The person with Alzheimers should wear nonskid shoes or
sneakers.
w Place locks high or low on exit doors so they are out of direct
sight. Consider installing double locks that require a key. Keep
a key for yourself, and hide one near the door for emergency
exit purposes.
w Use loosely fitting doorknob covers so that the cover turns
instead of the actual knob. Due to the potential hazard they
could cause if an emergency exit is needed, locked doors
and doorknob covers should be used only when a caregiver
is present.
w Install safety devices found in hardware stores to limit how
much windows can be opened.
page 18
w If possible, secure the yard with fencing and a locked gate. Use
door alarms such as loose bells above the door or devices that
ring when the doorknob is touched or the door is opened.
w Divert the attention of the person with Alzheimers disease
away from using the door by placing small scenic posters on
the door; placing removable gates, curtains, or brightly colored
streamers across the door; or wallpapering the door to match
any adjoining walls.
w Place STOP, DO NOT ENTER, or CLOSED signs on doors in
strategic areas.
w Keep shoes, keys, suitcases, coats, hats, and other signs of
departure out of sight.
w Obtain a medical identification bracelet for the person with
Alzheimers with the words memory loss inscribed along
with an emergency phone number. Place the bracelet on the
persons dominant hand to limit the possibility of removal, or
solder the bracelet closed. Check with the local Alzheimers
Association about the Safe Return program.
w Place labels in garments to aid in identification.
w Keep an article of the persons worn, unwashed clothing in a
plastic bag to aid in finding someone with the use of dogs.
w Notify neighbors of the persons potential to wander or become
lost. Alert them to contact you or the police immediately if the
individual is seen alone and on the move.
w Give local police, neighbors, and relatives a recent photo of
the person with Alzheimers, along with the persons name and
pertinent information, as a precaution should he or she become
lost. Keep extra photos on hand.
page 19
w Consider making an up-to-date home video of the person

with Alzheimers disease.
w Do not leave a person with Alzheimers who has a history of
wandering unattended.
Rummaging/Hiding Things
w Lock up all dangerous or toxic products, or place them out of
the persons reach.
w Remove all old or spoiled food from the refrigerator and
cupboards. A person with Alzheimers may rummage for
snacks but may lack the judgment or taste to rule out spoiled
foods.
w Simplify the environment by removing clutter or valuable
items that could be misplaced, lost, or hidden by the person
with Alzheimers disease. These include important papers,
checkbooks, charge cards, and jewelry.
w If your yard has a fence with a locked gate, place the mailbox
outside the gate. People with Alzheimers often hide, lose,
or throw away mail. If this is a serious problem, consider
obtaining a post office box.
w Create a special place for the person with Alzheimers to
rummage freely or sort (for example, a chest of drawers,
a bag of selected objects, or a basket of clothing to fold or
unfold). Often, safety problems occur when the person with
Alzheimers becomes bored or does not know what to do.
w Provide the person with Alzheimers a safe box, treasure chest,
or cupboard to store special objects.
page 20
w Close access to unused rooms, thereby limiting the opportunity

for rummaging and hiding things.
w Search the house periodically to discover hiding places. Once
found, these hiding places can be discreetly and frequently
checked.
w Keep all trash cans covered or out of sight. The person with
Alzheimers disease may not remember the purpose of the
container or may rummage through it.
w Check trash containers before emptying them in case
something has been hidden there or accidentally thrown away.
Hallucinations, Illusions, and Delusions

Due to complex changes occurring in the brain, people
with Alzheimers may see or hear things that have no basis in
reality. Hallucinations involve hearing, seeing, smelling, or
feeling things that are not really there. For example, a person with
Alzheimers may see children playing in the living room when no
children are there. Illusions differ from hallucinations because
the person with Alzheimers is misinterpreting something that
actually does exist. Shadows on the wall may look like people,
for example. Delusions are false beliefs that the person thinks
are real. For example, stealing may be suspected but cannot be
verified.
It is important to seek medical evaluation if a person with

Alzheimers has ongoing disturbing hallucinations, illusions, or
delusions. Discuss with the doctor any illnesses the person has
and medicines he or she is taking. An illness or medicine may
cause hallucinations or delusions. Often, these symptoms can be
page 21
treated with medication or behavior management techniques. With

all of these symptoms, the following environmental adaptations
also may be helpful.
w Paint walls a light color to reflect more light. Use solid

colors, which to an impaired person are less confusing than
a patterned wall. Large, bold prints (for example, florals in
wallpaper or drapes) may cause confusing illusions.
w Make sure there is adequate lighting and keep extra bulbs handy
in a secured place. Dimly lit areas may produce confusing
shadows or difficulty with interpreting everyday objects.
w Reduce glare by using soft light or frosted bulbs, partially
closing blinds or curtains, and maintaining adequate globes or
shades on light fixtures.
w Remove or cover mirrors if they cause the person with
Alzheimers disease to become confused or frightened.
w Ask if the person can point to a specific area that is producing
confusion. Perhaps one particular aspect of the environment is
being misinterpreted.
w Vary the home environment as little as possible to minimize the
potential for visual confusion. Keep furniture in the same place.
w Avoid violent or disturbing television programs. The person
with Alzheimers may believe a story is real.
w Do not confront the person with Alzheimers who becomes
aggressive. Withdraw and make sure you have access to an
exit as needed.
page 22
Special Occasions/Gatherings/Holidays
When celebrations, special events, or holidays include
large numbers of people, remember that large groups may
cause a person with Alzheimers disease some confusion
and anxiety. The person with Alzheimers may find some
situations easier and more pleasurable than others.
w Large gatherings, weddings, family reunions, or picnics

may cause anxiety. Consider having a more intimate
gathering with only a few people in your home. Think
about having friends and family visit in small groups
rather than all at once. If you are hosting a large group,
remember to prepare the person with Alzheimers ahead
of time. Try to have a space available where he or she
can rest, be alone, or spend some time with a smaller
number of people, if needed.
w Consider simplifying your holidays around the home,

and remember that you already may have more
responsibilities than in previous years. For example,
rather than cooking an elaborate dinner at Thanksgiving
or Christmas, invite family and friends for a potluck
dinner. Instead of elaborate decorations, consider
choosing a few select items to celebrate holidays. Make
sure holiday decorations do not significantly alter the
environment, which might confuse the person with
Alzheimers disease.
page 23
w Holiday decorations, such as Christmas trees, lights, or

menorahs, should be secured so that they do not fall or
catch on fire. Anything flammable should be monitored
at all times, and extra precautions should be taken so
that lights or breakable items are fixed firmly, correctly,
and out of the way of those with Alzheimers disease.
w As suggested by most manufacturers, candles of any

size should never be lit without supervision. When not
in use, they should be put away.
w Try to avoid clutter in general, especially in walkways,

during the holidays.
page 24
Impairment of the Senses

Alzheimers disease can cause changes in a persons ability to
interpret what he or she can see, hear, taste, feel, or smell. The
person with Alzheimers should be evaluated periodically by
a physician for any such changes that may be correctable with
glasses, dentures, hearing aids, or other devices.
Vision
People with Alzheimers may experience a number of changes
in visual abilities. For example, they may lose their ability to
comprehend visual images. Although there is nothing physically
wrong with their eyes, people with Alzheimers may no longer
be able to interpret accurately what they see because of brain
changes. Also, their sense of perception and depth may be altered.
These changes can cause safety concerns.
w Create color contrast between floors and walls to help the
person see depth. Floor coverings are less visually confusing
if they are a solid color.
w Use dishes and placemats in contrasting colors for easier
identification.
w Mark the edges of steps with brightly colored strips of tape
to outline changes in height.
w Place brightly colored signs or simple pictures on doors
to important rooms (the bathroom, for example) for easier
identification.
w Be aware that a small pet that blends in with the floor or lies
in walkways may be a hazard. The person with Alzheimers
disease may trip over the pet.
page 25
Smell
A loss of or decrease in the sense of smell often accompanies
Alzheimers disease.
w Install smoke detectors and check them frequently. The person

with Alzheimers disease may not smell smoke or may not
associate it with danger.
w Keep refrigerators clear of spoiled foods.
Touch
People with Alzheimers may experience loss of sensation or may
no longer be able to interpret feelings of heat, cold, or discomfort.
w Set water heaters at 120 degrees Fahrenheit to avoid scalding

tap water. Most hot water heaters are set at 150 degrees, which
can cause burns.
w Color code separate water faucet handles, with red for hot and
blue for cold.
w Place a sign on the oven, coffee maker, toaster, crock-pot,
iron, and other potentially hot appliances that says
DO NOT TOUCH or STOP! VERY HOT. The person with
Alzheimers should not use appliances without supervision.
Unplug appliances when not in use.
w Use a thermometer to tell you if bath water is too hot or too
cold.
w Remove furniture or other objects with sharp corners or pad
the corners to reduce potential for injury.
page 26
Taste
People with Alzheimers disease may lose taste sensitivity.
As their judgment declines, they also may place dangerous or
inappropriate things in their mouths.
w Keep all condiments such as salt, sugar, or spices hidden if

you see the person with Alzheimers using excess amounts.
Too much salt, sugar, or spice can be irritating to the stomach
or cause other health problems.
w Remove or lock up medicine cabinet items such as toothpaste,
perfume, lotions, shampoos, rubbing alcohol, and soap, which
may look and smell like food to the person with Alzheimers.
w Consider a childproof latch on the refrigerator, if necessary.
w Keep the toll-free poison control number (1-800-222-1222) by
the telephone. Keep a bottle of ipecac (vomit-inducing agent)
available, but use only with instructions from poison control
or 911.
w Keep pet litter boxes inaccessible to the person with
Alzheimers disease. Do not store pet food in the refrigerator.
w Learn the Heimlich maneuver or other techniques to use in
case of choking. Check with your local Red Cross chapter for
more information and instruction.
w If possible, keep a spare set of dentures. If the person keeps
removing dentures, check for correct fit.
page 27
Hearing
People with Alzheimers disease may have normal hearing, but
they may lose their ability to interpret what they hear accurately.
This loss may result in confusion or overstimulation.
w Avoid excessive noise in the home such as having the stereo

and the TV on at the same time.
w Be sensitive to the amount of noise outside the home, and
close windows or doors, if necessary.
w Avoid large gatherings of people in the home if the person
with Alzheimers shows signs of agitation or distress in
crowds.
w If the person wears a hearing aid, check the batteries and
functioning often.
Driving
Driving is a complex activity that demands quick reactions,
alert senses, and split-second decisionmaking. For a person with
Alzheimers disease, driving becomes increasingly difficult.
Memory loss, impaired judgment, disorientation, impaired visual
and spatial perception, slow reaction time, certain medications,
diminished attention span, and inability to recognize cues such
as stop signs and traffic lights can make driving particularly
hazardous.
People with Alzheimers who continue to drive can be a danger to

themselves, their passengers, and the community at large. As the
disease progresses, they lose driving skills and must stop driving.
page 28
Unfortunately, people with Alzheimers often cannot recognize

when they should no longer drive. This is a tremendous safety
concern. It is extremely important to have the impaired persons
driving abilities carefully evaluated.
Explaining to the person with Alzheimers disease that he or she

can no longer drive can be extremely difficult. Loss of driving
privileges may represent a tremendous loss of independence,
freedom, and identity. It is a significant concern for the person
with Alzheimers and the caregiver. The issue of not driving may
produce anger, denial, and grief in the person with Alzheimers, as
well as guilt and anxiety in the caregiver. Family and concerned
professionals need to be both sensitive and firm. Above all, they
should be persistent and consistent.
The doctor of a person with Alzheimers disease can assist the

family with the task of restricting driving. Talk with the doctor
about your concerns. Most people will listen to their doctor. Ask
the doctor to advise the person with Alzheimers to reduce his
or her driving, go for a driving evaluation or test, or stop driving
altogether. An increasing number of States have laws requiring
physicians to report Alzheimers and related disorders to the
Department of Motor Vehicles. The Department of Motor Vehicles
then is responsible for retesting the at-risk driver. Testing should
occur regularly, at least yearly.
When dementia impairs driving and the person with Alzheimers

disease continues to insist on driving, a number of different
approaches may be necessary.
page 29
w Work as a team with family, friends, and professionals, and

use a single, simple explanation for the loss of driving ability
such as: You have a memory problem, and it is no longer safe
to drive, You cannot drive because you are on medication,
or The doctor has prescribed that you no longer drive.
w Ask the doctor to write on a prescription pad DO NOT
DRIVE. Ask the doctor to write to the Department of Motor
Vehicles or Department of Public Safety saying this person
should no longer drive. Show the letter to the person with
Alzheimers disease as evidence.
w Offer to drive, or ask a friend or family member to drive.
w Walk when possible, and make these outings special events.
w Use public transportation or any special transportation
provided by community organizations. Ask about senior
discounts or transportation coupons. The person with
Alzheimers should not take public transportation
unsupervised.
w Park the car at a friends home.
w Hide the car keys.
w Exchange car keys with a set of unusable keys. Some people
with Alzheimers are in the habit of carrying keys.
w Place a large note under the car hood requesting that any
mechanic call you before doing work requested by the person
with Alzheimers disease.
w Have a mechanic install a kill switch or alarm system that
disengages the fuel line to prevent the car from starting.
page 30
Warning Signs of Unsafe Driving

Often, the caregiver or a family member, neighbor, or
friend is the first to become aware of the safety hazards of
someone with Alzheimers behind the wheel. If the driver
with Alzheimers disease experiences one or more of the
following problems, it may be time to limit or stop driving.
Does the person with Alzheimers:

v get lost while driving in a familiar location?
v fail to observe traffic signals?
v drive at an inappropriate speed?
v become angry, frustrated, or confused while driving?
v make slow or poor decisions?
Please do not wait for an accident to happen. Take action
immediately!
page 31
w Consider selling the car and putting aside for taxi fares the
money saved from insurance, repairs, and gasoline.
w Do not leave a person with Alzheimers alone in a parked car.
Natural Disaster Safety

Natural disasters come in many forms and degrees of severity.
They seldom give warning, and they call upon good judgment
and the ability to follow through with crisis plans. People
with Alzheimers disease are at a serious disadvantage. Their
impairments in memory and reasoning severely limit their ability to
act appropriately in crises.
It is always important to have a plan of action in case of fire,

earthquake, flood, tornado, or other disasters. Specific home
safety precautions may apply and environmental changes may
be needed. The American Red Cross is an excellent resource
for general safety information and preparedness guides for
comprehensive planning. If there is a person with Alzheimers in
the home, the following precautions apply:
w Get to know the neighbors, and identify specific individuals

who would be willing to help in a crisis. Formulate a plan
of action with them should the person with Alzheimers be
unattended during a crisis.
w Give neighbors a list of emergency phone numbers of
caregivers, family members, and primary medical resources.
page 32
w Educate neighbors beforehand about the persons specific

disabilities, including inability to follow complex instructions,
memory loss, impaired judgment, and probable disorientation
and confusion. Give examples of some of the simple one-step
instructions that the person may be able to follow.
w Have regular emergency drills so that each member of
the household has a specific task. Realize that the person
with Alzheimers disease cannot be expected to hold any
responsibility in the crisis plan and that someone will need to
take primary responsibility for supervising the individual.
w Always have at least an extra weeks supply of any medical or
personal hygiene items critical to the persons welfare, such as:
l food and water
l medications
l incontinence undergarments
l hearing aid batteries
w Keep an extra pair of the persons eyeglasses on hand.
w Be sure that the person with Alzheimers wears an
identification bracelet stating memory loss should he or she
become lost or disoriented during the crisis. Contact your local
Alzheimers Association chapter and enroll the person in the
Safe Return program.
w Under no circumstances should a person with Alzheimers
be left alone following a natural disaster. Do not count on
the individual to stay in one place while you go to get help.
Provide plenty of reassurance.
page 33
ho Would Take Care of the Person with

W
Alzheimers If Something Happened to You?
It is important to have a plan in case of your own illness,
disability, or death.
w Consult a lawyer about setting up a living trust, durable power
of attorney for health care and finances, and other estate
planning tools.
w Consult with family and close friends to decide who
will take responsibility for the person with Alzheimers.
You also may want to seek information about your local
public guardians office, mental health conservators
office, adult protective services, or other case management
services. These organizations may have programs to assist
the person with Alzheimers in your absence.
w Maintain a notebook for the responsible person who will
assume caregiving. Such a notebook should contain the
following information:
l emergency phone numbers
l current problem behaviors and possible solutions
l ways to calm the person with Alzheimers
l assistance needed with toileting, feeding, or grooming
l favorite activities and foods
w Preview board and care or long-term care facilities in your
community and select a few as possibilities. Share this
information with the responsible person. If the person with
Alzheimers disease is no longer able to live at home, the
responsible person will be better able to carry out your
wishes for long-term care.
page 34
Conclusion
Home safety takes many forms. This booklet focuses on the
physical environment and specific safety concerns. But the home
environment also involves the needs, feelings, and lifestyles of
you the caregiver, your family, and the person with Alzheimers
disease. Disability affects all family members, and it is crucial
to maintain your emotional and physical welfare in addition to
ensuring a safe environment.
We encourage you to make sure you have quiet time, time out,
and time to take part in something you enjoy. Protect your own
emotional and physical health. Your local Alzheimers Association
chapter can help you with the support and information you may
need as you address this very significant checkpoint in your home
safety list. You are extremely valuable. As you take on a
commitment to care for a person with Alzheimers, please take on
the equally important commitment to care for yourself.
page 36
Additional Resources
Several organizations offer caregivers information about
Alzheimers disease. To learn more about support groups, services,
research, and additional publications, you may wish to contact the
following groups:
Alzheimers Disease Education and Referral

(ADEAR) Center
P.O. Box 8250
1-800-438-4380 (toll-free)
The National Institute on Agings ADEAR Center offers
information and publications for families, caregivers, and
professionals on diagnosis, treatment, patient care, caregiver
needs, long-term care, education and training, and research
related to Alzheimers disease. Staff members answer telephone,
email, and written requests and make referrals to local and
national resources. The ADEAR website offers free, online
publications in English and Spanish; email alert and online
Connections newsletter subscriptions; an Alzheimers disease
clinical trials database; the Alzheimers Disease Library database;
and more.
page 37
Alzheimers Association
225 North Michigan Avenue, Floor 17
Chicago, IL 60601-7633
1-800-272-3900 (toll-free)
1-866-403-3073 (TDD/toll-free)
www.alz.org
The Alzheimers Association is a national nonprofit association
with a network of local chapters that provide education and support
for people diagnosed with Alzheimers disease, their families, and
caregivers. The Association also supports research on Alzheimers.
Alzheimers Foundation of America

322 Eighth Avenue, 7th Floor
New York, NY 10001
1-866-232-8484 (toll-free)
www.alzfdn.org
The Alzheimers Foundation of America provides care and
services to individuals confronting dementia and to their
caregivers and families through member organizations dedicated
to improving quality of life. Services include a toll-free hotline,
consumer publications and other educational materials, and
conferences and workshops.
page 38
Ageless Design
3197 Trout Place Road
Cumming, GA 30041
1-800-752-3238 (toll-free)
www.agelessdesign.com
This organization offers books, videos, a newsletter, and other
products for caregivers of people with Alzheimers disease.
American Red Cross

2025 E Street, NW
Washington, DC 20006
1-703-206-6000
www.redcross.org
The Red Cross offers health information, health services, disaster
relief, and emergency services to the public. Local chapters
provide programs for older people, including safety courses and
home nurse care instruction.
Children of Aging Parents

P.O. Box 167
Richboro, PA 18954
1-800-227-7294 (toll-free)
www.caps4caregivers.org
This nonprofit group provides information and materials for adult

children caring for their older parents. Caregivers of people with
Alzheimers disease may also find this information helpful.
page 39
Eldercare Locator
1-800-677-1116 (toll-free)
www.eldercare.gov
Eldercare Locator is a nationwide directory-assistance service
helping older people and their caregivers locate local support
and resources. It is funded by the U.S. Administration on Aging,
whose website at www.aoa.gov also features Alzheimers
information for families, caregivers, and healthcare professionals.
Family Caregiver Alliance

180 Montgomery Street, Suite 1100
San Francisco, CA 94104
1-800-445-8106 (toll-free)
www.caregiver.org
The Family Caregiver Alliance is a nonprofit organization that
offers support services and information for people caring for
adults with Alzheimers, stroke, traumatic brain injuries, and
other cognitive disorders.
Well Spouse Association

63 West Main Street, Suite H
Freehold, NJ 07728
1-800-838-0879 (toll-free)
www.wellspouse.org
This nonprofit organization gives support to spouses and partners
of people who are chronically ill and/or disabled. It offers support
groups and a newsletter.
page 40
The National Institute on Aging gratefully acknowledges the
caring staff of the Alzheimers Disease Research Center at
the University of California, San Diego, and the Alzheimers
Association of San Diego, who shared their valuable advice,
experience, and expertise to create this booklet.
Contact the ADEAR Center for additional Alzheimers

disease information, including the free publication Caring
for a Person with Alzheimers Disease: Your Easy-to-Use
Guide from the National Institute on Aging.
Alzheimers Disease Education and Referral (ADEAR) Center

1-800-438-4380
The ADEAR Center is a service of the

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
NIH Publication No. 02-5179
August 2010

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Alzheimers Disease Unraveling the Mystery and Home Safety

1. Alzheimers Disease Unraveling the Mystery Pages 1-80

2. Home Safety for People with Alzheimers Disease Pages 1-40

National Institute on Aging

TO GET THE MOST OUT OF THIS BOOK

Learn the Basics of the Healthy Brain Discover What Happens

Explore Cutting-Edge AD Research Learn about Caregiver Support

TO LEARN EVEN MORE

2 ALZ HEIMERS DISEASE Unraveling the Mystery

A L Z HE I M ERS D I S EA SE Unraveling the Mystery 3

See the glossary on page 70 for

4 ALZ HEIMERS DISEASE Unraveling the Mystery

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 5

Then and Now: The Fast Pace of Developments in AD Research

6 ALZ HE I ME R S D IS EASE Unraveling the Mystery

Scientists start to unravel the biological pathways 2OOOs

created. researchers to see beta-amyloid plaques in the

described and dened. techniques, genetics, memory and cognitive

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 7

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 9

10 ALZ HEIMERS DISEASE Unraveling the Mystery

12 ALZ HEIMERS DISEASE Unraveling the Mystery

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 13

14 ALZ HEIMERS DISEASE Unraveling the Mystery

Once the post-synaptic receptors are activated, METABOLISM

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 17

18 ALZ HEIMERS DISEASE Unraveling the Mystery

T he phrase use it or lose it may make you think

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 19

To view a video showing what happens to

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 21

From APP to Beta-Amyloid Plaques

A myloid precursor protein (APP), the starting

22 ALZ HEIMERS DISEASE Unraveling the Mystery

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 23

Healthy and Diseased Neurons

24 ALZ HEIMERS DISEASE Unraveling the Mystery

Formation of Tau Tangles

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 25

LOSS OF CONNECTION BETWEEN The AD process not only inhibits communi-

This illustration shows

26 A L ZH EIMER S D ISE AS E Unraveling the Mystery

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 27

PiB and PET

I magine being able to see deep inside the brain tissue of

28 ALZ HEIM ERS DISE ASE Unraveling the Mystery

T his chart shows cur-

a much higher percentage of them go on to de- AD (see Genetic Factors at Work in AD on

A LZHEIMERS DISEA S E Unraveling the Mystery 29

explored whether changes in older adults ability to Mild to Moderate AD

30 ALZ HEIMERS DISEASE Unraveling the Mystery

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 31

Groaning, moaning, or grunting AD Spreads Through the Brain

32 ALZ HEIMERS DISEASE Unraveling the Mystery

T he medical school curriculum

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 33

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 35

GENETIC FACTORS AT WORK IN AD

A L ZHE I M ER S D I SE A SE Unraveling the Mystery 37

Genes and Early-Onset A Different Genetic Story in

38 ALZ HEIMERS DISEASE Unraveling the Mystery

F or some time, scientists have

Alzheimer's Disease

Alzheimer's Disease