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 The Encyclopedia of

Alzheimer’s disease
Second Edition
 The Encyclopedia of

Alzheimer’s Disease
Second Edition

Carol Turkington
and
Deborah Mitchell

Foreword by
James E. Galvin, M.D., M.P.H.
 Disclaimer: This book is intended to provide helpful information on the subject matter covered herein. It is sold with
the understanding that the authors and the publisher are not engaged in rendering professional medical, health, or any
other kind of personal professional services via this book. If the reader wants or needs personal advice or guidance, he
or she should seek an in-person consultation with a competent medical professional. Furthermore, the reader should
consult his or her medical, health, or other competent professional before adopting any of the suggestions in the book
or drawing inferences from information that is included herein. The authors and publisher specifically disclaim any
responsibility for any liability, loss, or risk, whether personal or otherwise, that someone may incur as a consequence
direct, or indirect, of the use and application of any contents of this book. In no way does reading this book replace
evaluation by a physician. Also, the full responsibility for any adverse effects that result from the use of information
in this book rests solely with the reader.

The Encyclopedia of Alzheimer’s Disease, Second Edition

Copyright © 2010, 2003 by the Estate of Carol Turkington

All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic
or mechanical, including photocopying, recording, or by any information storage or retrieval systems, without
permission in writing from the publisher. For information contact:

Facts On File, Inc.

An imprint of Infobase Publishing, Inc.
132 West 31st Street
New York NY 10001

Library of Congress Cataloging-in-Publication Data

Turkington, Carol.
The encyclopedia of Alzheimer’s disease / Carol Turkington with Deborah Mitchell ; foreword by
James E. Galvin.—2nd ed.
p. cm.
Includes bibliographical references and index.
ISBN-13: 978-0-8160-7766-3 (hardcover : alk. paper)
ISBN-10: 0-8160-7766-5 (hardcover : alk. paper) ISBN: 978-1-4381-2858-0 (e-book) 1. Alzheimer’s disease—
Encyclopedias. I. Mitchell, Deborah R. II. Title.
[DNLM: 1. Alzheimer Disease—Encyclopedias—English. WT 13 T939e 2009]
RC523.T87 2009
616.8'31003—dc22 2009006661

Facts On File books are available at special discounts when purchased in bulk quantities for businesses,
associations, institutions, or sales promotions. Please call our Special Sales Department in New York
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You can find Facts On File on the World Wide Web at http://www.factsonfile.com

Text and cover design by Cathy Rincon

Composition by Hermitage Publishing Services
Cover printed by Sheridan Books, Ann Arbor, MI
Book printed and bound by Sheridan Books, Ann Arbor, MI
Date printed: March 2010

Printed in the United States of America

10 9 8 7 6 5 4 3 2 1

This book is printed on acid-free paper.

LHL-Alzheimer-FNL.indd 4 4/2/10 10:52:39 AM

To my wife, Doris, and my sons, Chris, Jake, and Conor.
They are my source of inspiration and strength.
—J. E. G.

h
 CONTENTS
Foreword ix
Acknowledgments xiii
Introduction xv
Entries A–Z 1
Appendixes
Appendix I: Alzheimer’s Disease Resources 222
Appendix II: Alzheimer’s Disease Centers 232
Appendix III: Area Agencies on Aging 236
Appendix IV: International Alzheimer’s Disease
 Associations 241
Appendix V: Legal/Financial Issues 248
Appendix VI: Read More about It 254
Appendix VII: Alzheimer’s Disease Clinical Trials 256
Glossary 261
Bibliography 264
Index 285
 Foreword
F ew words evoke more fear or uncertainty than
dementia. Dementia comes from the Latin de-
“apart, away” and mens, “mind,” but for millions
dementing disorder, increases with age for every
decade after 65. It is currently estimated that there
are more than 5 million Americans with AD, up to
of people the word indicates a thief that has stolen half of whom may be undiagnosed.
away a loved one’s personality, memory, language, About one in 10 individuals over the age of
and knowledge. The transformation typically is 65 and half of everyone over age 85 will develop
gradual, a slow decline in abilities that eventually dementia. In addition to AD, other common
leaves behind a victim who is uncommunicative, causes of dementia are cerebrovascular disease and
uncomprehending, and unresponsive. I use the Parkinson’s disease. The annual direct and indirect
term victim deliberately, because anyone who has costs of Alzheimer’s and other dementias to Medi-
seen a loved one changed by the progression of care, Medicaid, and businesses amount to more
these relentless disorders knows this image is apt. than $148 billion. Dementia is clearly a challenge
I say disorders because dementia is not a single that affects many sectors of society.
disease but, rather, a symptom of many conditions Overt clinical dementia is not the only cogni-
that cause brain dysfunction. Dementia is associ- tive/memory deficit that affects so many older
ated with a wide range of symptoms, modes of individuals. Terms such as mild cognitive impairment
onset, clinical courses, and therapeutic responses. and age-associated memory impairment have been
Perhaps the one positive thing that can be said proposed to characterize people who have some
about this condition is that the diverse background memory challenges but who have relative preser-
of clinical symptoms provides researchers with vation of other cognitive abilities and functions of
fertile grounds for developing theories and insights daily life. It has been difficult to reach consensus,
into the basic inner workings of the brain and of however, on how and when these entities should
the mind. be diagnosed. Moreover, because the prevalence of
Over the years, I have often looked upon my dementia increases with age, and because there is
patients with sorrow because I am all too aware of wide variation in test performance among normal
the changes that will occur in their lives. I am in older adults, the boundaries between age-related
awe of the inner strength and resolve of so many cognitive decline and very early dementia are
caregivers who strive to provide their loved ones sometimes uncertain, both to the patients and to
with the care they deserve. I watch as they look the physicians who treat them.
for answers and for hope. In the early part of the 20th century, Dr. Alois
Dementia is a common problem. There is a good Alzheimer described his first patient (Auguste D)
chance that everyone who opens this book will with the disorder that would come to bear his
know someone who has dementia. The prevalence name. A psychiatrist, Dr. Alzheimer examined
of Alzheimer’s disease (AD), the most common Auguste D in an institutionalized setting after she

ix
 The Encyclopedia of Alzheimer’s Disease

was admitted for delusions of extreme jealousy 1992. In 1996 donepezil (Aricept) was approved.
and spousal infidelity. She lived only four and Donepezil was followed by rivastigmine (Exelon)
a half years after she was admitted to the sani- in 2000 and galantamine (formerly Reminyl; now
tarium. Dr. Alzheimer performed an autopsy and Razadyne) in 2001. All four of these drugs are in
described the classic senile degenerative changes the category of cholinesterase inhibitors. Then in
that have come to be synonymous with AD. For 2003, the Food and Drug Administration (FDA)
three-quarters of a century after that, the diag- approved memantine (Namenda), the (so far) sole
nosis of AD was largely relegated to individuals drug in the glutamate receptor–blocking agent
confined to nursing homes and psychiatric insti- classification. Currently there are more than 100
tutions, bedridden and incontinent, unaware of new compounds undergoing clinical trials for the
their surroundings. People living at home who treatment of dementia.
had memory problems were often told they were The high level of research activity offers hope
just getting old or a little senile. Memory problems for a brighter future of the care of dementia
were misdiagnosed as “hardening of the arteries” patients. With the advent of advances in molecu-
or “part of the normal aging process.” In general, lar biology, genetics, pharmacology, and biochem-
there was little effort to search for either the cause istry, we have learned so much about the disease
of the disease or for treatments. process that mechanistic approaches to both diag-
Two factors dramatically changed these per- nosis and treatment now seem within reach. The
ceptions. The first was the creation in 1974 of search for biomarkers of the disease has greatly
the National Institute on Aging (NIA) within the advanced. Very soon it will be possible to take a
National Institutes of Health (NIH). From this point blood test to make a diagnosis of AD. We are also
onward, significant focus was placed on the public on the brink of being able to image the pathology
policy implications of the aging American popula- of AD in a living person’s brain, enabling clinicians
tion, as it was becoming increasingly apparent that to accurately diagnose an individual at the earliest
a marked proportion were experiencing some form possible stage of dementia.
of memory impairment. One of the first actions of Treatment options will also greatly expand. In
the NIA was to create centers of excellence for addition to the symptomatic treatment from the
clinical and basic science research investigating cholinesterase inhibitors and the newest drug addi-
AD and other forms of dementia. Twenty-nine tion, memantine, mechanism-based approaches
such centers now operate in the United States, will enable clinicians to prevent the production of
and other branches of NIH have also established amyloid proteins and enhance its removal from
centers to investigate other diseases of the elderly the brain.
such as cancer and Parkinson’s disease. There is still so much more to do, however. It
The second important factor was the chemical is estimated that within one generation (the year
analysis of the proteins found in the brain lesions 2050), there will be as many as 16 million Ameri-
of AD: amyloid beta protein in the senile plaques cans with dementia. People with AD currently
and tau protein in the neurofibrillary tangles. With make up half of all nursing home populations,
targets of scientific inquiry and funding available and AD is the sixth leading cause of death in the
for scientists to pursue these new avenues of United States. Part of the problem still lies in the
research, the chase was on. Neuroscience research underrecognition of the disorder. Fewer than half
is now one of the largest areas of scientific growth, of the individuals with dementia are correctly
along with cancer and cardiovascular disease. diagnosed, and more important, even in the face
Once the federal government and academia of diagnosis, less than half of all persons with
displayed interest in dementia, the pharmaceutical dementia are treated with the only medications
industry leapt into action. With advances in the currently approved to treat the disease. This is not
molecular understanding of AD, the first medica- the case with other diseases of the elderly, such
tion for the treatment of AD (tacrine, Cognex; as hypertension, diabetes, or heart disease. If the
no longer actively marketed) was approved in field is to advance further, families and clinicians
 Foreword xi

must be more aware of the problems so that as read it. In today’s world most medical information
new treatments become available, eligible patients is readily available on the Internet or at university
are prescribed them. Knowledge is power! libraries. The information is also available from
I first became interested in dementia observ- most family physicians.
ing my grandfather’s battle with Parkinson’s dis- I have dedicated my professional career to help-
ease and dementia. He was diagnosed during ing individuals with dementia and their families,
my junior year in high school. Over the next 15 and I provide a substantial amount of (what I con-
years I watched a vital, strong-willed individual sider) useful information to each family from the
decline both physically and mentally until he was time of the first office visit through the terminal
essentially immobile, mute, and unaware of his portion of the patient’s life. Should I really take
surroundings. Ultimately, the only response my the time to put all of this information down in
grandfather was able to consistently make was to one place so that it is readily available to someone
his visual hallucinations, causing him eventually searching for answers?
to fall and fracture his hip. Although the surgeon Of course, that is when I came to understand
succeeded in repairing his fracture, my grandfather the true value of this project. The real question
never recovered, passing away in his sleep at the is not should I help put together this volume, and
rehabilitation hospital. This experience combined now this updated version, but rather why I had not
with my interest in science led to the pursuit done it sooner.
of a career in neurology, focusing on geriatric Volumes such as the Facts On File series pro-
disorders. vide families and patients with Alzheimer’s disease
Sadly, back then I was not able to provide my and other forms of dementia the information and
grandmother with information that might have resources they need and provide it in an easy-to-
prevented grandfather’s death or at the very least understand and easy-to-read format.
made both their lives a little bit easier. I hope we
have succeeded in providing such useful informa- —James E. Galvin, M.D., M.P.H.
tion with this updated volume. Associate Professor, Neurology,
When I was first approached to assist in this Psychiatry and Neurobiology
project, I questioned the value of producing an Director, Memory Diagnostic Center
encyclopedia about Alzheimer’s disease. I won- Director, Education and Community Outreach
dered about the individuals who would read it Alzheimer’s Disease Research Center
and, more important, why they would want to Washington University School of Medicine
 Acknowledgments
I would like to acknowledge the sources of my
research support, including the National Insti-
tute on Aging, the National Institutes of Health,
generous support of Alan A. and Edith L. Wolff.
Most of all, I wish to thank all my patients, their
families and caregivers, who have taught me so
the American Federation for Aging Research, the much but constantly show me that I have so much
Missouri Alzheimer Disease and Related Disorders yet to learn.
Program, the Longer Life Foundation, and the —James E. Galvin, M.D., M.P.H.

xiii
 Introduction
S ince the 2003 edition of this volume, research-
ers and investigators dedicated to unraveling
the mysteries of Alzheimer’s disease have been
beta amyloid, the hallmark of Alzheimer’s, and
dimebon, a drug that targets the mitochondria, the
source of energy for all cells. As of this writing, bap-
working diligently and making great strides in ineuzumab and dimebon were both in Phase III tri-
increasing our understanding of and our ability als while two other drugs, Flurizan and Alzhemed,
to prevent and treat Alzheimer’s disease. To help failed Phase III trials and were withdrawn.
bring you up to date with the many new develop- In genetics, one of several findings was the
ments and exciting prospects surrounding this dev- gene SORL1, which has been implicated in late-
astating disease, one that is affecting an increasing onset Alzheimer’s disease. This gene appears to be
number of adults in our aging population, we have involved in a cellular sorting process that eventu-
put together this revised edition. ally leads to the formation of amyloid plaques.
Among the many new developments, for exam- So far, the only way to definitively diagnose
ple, are a novel drug that may slow the progression Alzheimer’s disease is an autopsy, and the need
of moderately severe to severe Alzheimer’s disease for reliable methods to identify the disease in the
and another that may soon enter the marketplace; living brain would be invaluable for early diagno-
exciting discoveries in genetics that may allow doc- sis and for monitoring the impact of treatment. A
tors to determine who is at greater risk for devel- study published in March 2007 in the Archives of
oping Alzheimer’s and how to better treat their Neurology stated that a positron emission tomog-
patients; innovative diagnostic tools that may help raphy (PET) done after injection of Pittsburgh
identify Alzheimer’s in the living brain and one compound B (PIB), a radioactive dye, showed the
day permit clinicians to diagnose the disease early distribution of amyloid at autopsy matched the
on; and improved ways to safeguard the emotional overall distribution seen on the PET-PIB scan. If
and physical health of Alzheimer’s caregivers. Take the accuracy of this test can be replicated in large
a look at each of these areas. trials, it may become one way to make a definitive
In 2003, the Food and Drug Administration diagnosis of Alzheimer’s disease in a living brain.
(FDA) approved memantine, the first and only Some new discoveries about the impact on
drug in its class (it blocks glutamate) that can treat Alzheimer’s disease caregivers have also come to
moderate to severe Alzheimer’s disease. During light. For example, researchers found that people
the same time frame, the manufacturer of tacrine, who care for Alzheimer’s patients have shorter
which had been approved in 1993 for treatment of telomeres than non-caregivers. Telomeres are bits
mild Alzheimer’s, stopped actively marketing the of genetic material found at the end of chromo-
drug, as it is associated with liver damage. Among somes. Although shortening of telomeres is part
the possible new drugs that may someday hit the of the natural aging process, caregivers have telo-
market are bapineuzumab, a drug that clears away meres that are significantly shorter than those of

xv
xvi The Encyclopedia of Alzheimer’s Disease

a control group. Caregivers also have signs of a President Bill Clinton on July 16, 2000. Among its
weaker immune system and more inflammation- goals was an acceleration of research on new ways
promoting proteins. With this and similar informa- to prevent and treat the disease, with specific focus
tion, experts can take steps to protect the health of on the development of an Alzheimer’s vaccine. To
Alzheimer’s caregivers. these ends, the NIH set aside $50 million through
Also since 2003, two international conferences 2005. Again, some results of this initiative can be
were held. The Alzheimer’s Association Interna- found in these pages.
tional Conference on Prevention of Dementia Today scientists in both public and private sec-
attracted more than 1,000 scientists, physicians, and tors are working together to understand more
policymakers who shared information and goals. At about this devastating disease. Some of the major
the second conference in June 2007, the Centers for supporters of Alzheimer’s research are part of the
Disease Control and Prevention and the Alzheimer’s NIH Alzheimer’s Disease Working Group, which
Association released the first National Public Health includes the National Institute on Aging, the
Road Map to Maintaining Cognitive Health. This National Institute of Neurological Disorders and
road map, which can be viewed at www.cdc.gov/, Stroke, the National Institute of Mental Health,
offers strategies for evaluating public perceptions and the National Institute of Nursing Research.
about cognitive health, recommends specific actions They are joined by dozens of nonprofit organiza-
that can be taken to support cognitive health, and tions that provide monies for research and much-
calls for more research into the risk factors for cog- needed support for Alzheimer’s patients and their
nitive decline and interventions to prevent it. caregivers and families.
At the time the previous volume was published, This book has been designed as a guide and ref-
the National Institutes of Health (NIH) had launched erence to a wide range of subjects relevant to the
several initiatives, and now in this revised version understanding of Alzheimer’s disease. It includes a
we can share some of the fruits of their labors. wide variety of contact information for organiza-
One initiative was called the NIH Alzheimer’s Dis- tions and governmental agencies affiliated with
ease Prevention Initiative, which was designed to the condition, including current Web site addresses
accelerate the progress of experts who are engaged and contact information. However, the book is not
in findings ways to delay or prevent the onset of meant to be a substitute for prompt assessment
Alzheimer’s disease as well as working on getting and treatment by experts trained in the diagnosis
potential new treatments to market. One of the and support of Alzheimer’s disease.
initiative’s projects was a clinical trial that focused In this encyclopedia we have tried to present the
on preventing or delaying the onset of clinically latest information in the field, based on the most
diagnosed Alzheimer’s disease in people at risk, up-to-date research and current FDA approvals of
which was launched in March 1999. The three-year new treatments. Readers will find comprehensive
study (sponsored by the Alzheimer’s Disease Coop- entries on the suspected causes (and controver-
erative Study Group) investigated the effectiveness sies), risks, diagnoses, prevention, and treatment
of donepezil (a drug prescribed for mild to moder- of the disease.
ate Alzheimer’s) and vitamin E in delaying or pre- Although information in this book comes from
venting the onset of Alzheimer’s disease in people the most recent medical journals and research
who had mild cognitive impairment. The results sources, readers should keep in mind that changes
of the study were published in the June 9, 2005, occur very quickly in neurology. A bibliography
issue of the New England Journal of Medicine and are has been included for those who seek additional
explained in detail elsewhere in this volume. sources of information.
A second initiative, called the President’s Initia- —Deborah Mitchell
tive on Alzheimer’s Disease, was announced by Tucson, Arizona
Entries A–Z
 A
abstract language See language areas of the supersedes doctor-patient confidentiality issues;
brain. failure to report the problem can make doctors
liable.
See also elder abuse.
abuse Abuse of a patient with Alzheimer’s disease
may be physical, psychological, financial, material,
or any combination of these. Because patients with acetylcholine A chemical messenger that brain
Alzheimer’s are demented, they are vulnerable to cells use to communicate with each other, espe-
a wide range of abuse by others—either caregivers, cially in parts of the brain important for thought,
family, friends, or strangers. In an institution, a memory and judgment. Acetylcholine is a critical
patient may be abused not only by a staff member, neurotransmitter in the process of forming memo-
but by another patient, an intruder, or a visitor. ries, and it is the neurotransmitter commonly used
Physical abuse is usually easy to spot, but other by nerve cells in the hippocampus and cerebral
types of abuse may be more insidious. Emotional cortex—regions devastated by Alzheimer’s disease.
abuse includes verbal assaults, threats of abuse, Normally, acetylcholine is produced by these brain
harassment, and intimidation. Neglect is usually cells, released to carry signals, and then broken
the responsibility of a caregiver who fails to pro- down for reuse by enzymes. When brain cells are
vide food, clothing, shelter, or medical care. Finan- damaged by Alzheimer’s disease, they produce less
cial abuse involves misusing or withholding the acetylcholine, which disrupts communication in
patient’s money. the brain.
Sometimes, sexual abuse may be a problem; Since low acetylcholine levels were first dis-
this could involve anything from inappropriate covered in patients with Alzheimer’s disease, the
touching or fondling to any sexual activity when chemical has been the subject of hundreds of stud-
the patient is unable to understand, unwilling to ies. Scientists have found that acetylcholine levels
consent, or physically forced to participate. can be as much as 90 percent lower in people with
Family members who don’t live with the patient Alzheimer’s. They have also discovered that low
can guard against abuse by routinely asking ques- levels are linked to memory problems.
tions directly related to abuse or neglect. If the Acetylcholinesterase is an enzyme that breaks
patient confirms abuse, family members should down acetylcholine. Medications that disrupt the
examine the patient thoroughly and document transmission of acetylcholine in the brain are
findings, including the person’s statements, behav- known as anticholinergic drugs. They work by
ior, and appearance. Family members should blocking cholinergic receptors, preventing acetyl-
maintain well-documented medical records and choline release or completely depleting neurons
photographs that can provide concrete evidence that use acetylcholine.
and may be crucial in any legal case. A recent study (2008) found that the use of anti-
Many states require physicians to report sus- cholinergic drugs is associated with a more rapid
pected elder abuse and neglect to a designated state decline in cognitive abilities and performance in
agency. A doctor’s duty to report suspected abuse older individuals. The study, which was presented


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