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ALZHEIMERS

DISEASE

Unraveling the Mystery

National Institute

on Aging

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ALZHEIMERS

DISEASE

Unraveling the Mystery

Preface

Over the past few lead agency for AD research at nizations around the world, and decades, Alzheimer’s 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 NIA’s 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

stitutes also conduct and sponsor working, and highlights new millions of older Americans

studies on AD.

approaches for helping families

and 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 NIA’s Alzheimer’s Disease Education and Referral Center website at www.nia.nih.gov/alzheimers.

There, you will find 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 Center’s many other offerings. These include free publications about AD and AD

caregiving, clinical trials information, and a list of NIA-funded Alzheimer’s Disease Centers.

2 ALZHEIMER’S DISEASE Unraveling the Mystery

Table Contents

of

4 INTRODUCTION

    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

    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

    4

62 IMPROVING SUPPORT FOR

FAMILIES AND OTHER CAREGIVERS

    2

64 Research Findings Benefit Caregivers

20 WHAT HAPPENS TO THE BRAIN IN AD

66 Early-Stage AD Support Groups:

21 The Hallmarks of AD

A Vital Source of Help

21 Amyloid Plaques

25 Neurofibrillary Tangles

69 CONCLUSION

26 Loss of Connection Between

Cells and Cell Death

70 GLOSSARY

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

ALZHEIMER’S DISEASE Unraveling the Mystery 3

Introduction

“Never have I loved my husband of 41 years more than I do today....Though he may not know I’m 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.”

This excerpt from Lessons Learned: Shared studying AD so that they can find 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 Alzheimer’s 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 first

the numbers will increase significantly 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 crit-

human brain often can function well into the

ical 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

definitions of boldfaced terms.

4 ALZHEIMER’S DISEASE Unraveling the Mystery

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 benefit individuals, families, and of course. The number of AD caregivers—and

the Nation as a whole.

their needs—can 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 financial 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 difficult, 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

heavy economic burden on society. The national

Part 1 gives readers some basics about the

direct and indirect costs of caring for people with

healthy brain. Illustrations and text show what a

AD are estimated to be more than $100 billion a

healthy brain looks like and how it works.

year. A 2004 study provided an equally sobering

Part 2 focuses on what happens in the brain

picture of the impact of AD. It is estimated that

during AD.

if current AD trends continue, total Federal

Medicare spending to treat beneficiaries with the

Visit the National Institute on Aging (NIA)

disease will increase from $62 billion in 2000 to

Alzheimer’s Disease Education and Referral

$189 billion in 2015.

(ADEAR) Center website at www.nia.nih.gov/

For these reasons, AD is an urgent research

alzheimers/alzheimers-disease-video to view

priority. We need to find ways to manage and treat

an animation that helps this part of the book

AD because of its broad-reaching and devastating

come alive.

impact. We now know that the disease process

ALZHEIMER’S DISEASE Unraveling the Mystery 5