Alzheimer's Disease : The Impact and Mystery

by National Institute on Aging

Often, Mary was afraid, a nameless, shapeless fear. Her impaired mind could not put a name or an explanation to her fear. People came, memories came, and then they slipped away. She could not tell what was reality and what was memory of people past. The bathroom was not where it was yesterday. Dressing became an insurmountable ordeal .... Mary gradually lost the ability to make sense out of what her eyes and ears told her.... She worried about her things: a chair, and the china that had belonged to her mother. They said they had told her over and over, but she could not remember where her things had gone. Perhaps someone had stolen them. She had lost so much.... Mary was glad when her family came to visit. Sometimes she remembered their names; more often she did not. She never remembered that they had come last week, so she regularly scolded them for abandoning her.... She was glad when they didn't try to remind her of what she had just said or that they had come last week, or ask her if she remembered this person or that one. She liked it best when they just held her and loved her.

This excerpt from The 36-Hour Day, a book for families and caregivers of people with Alzheimer's disease (AD) and other similar diseases, gives a glimpse into what an Alzheimer's patient might be thinking and feeling. The gradual slipping away of mind and memory is frightening and frustrating, both for the person with the disease and for family and friends. Not so long ago, we couldn't do much for Mary or others like her. Happily, that situation is changing. Thousands of scientists, voluntary organizations, health care professionals, and families are working hard to learn more about Alzheimer's. They are also finding ways to manage, treat, and eventually perhaps, prevent this terrible disease.

Alzheimer's is an irreversible, progressive brain disease that slowly destroys memory and thinking skills, eventually even the ability to carry out the simplest tasks. Although the risk of developing AD increases with age - in most people with AD, symptoms first appear after age 60 - AD is not a part of normal aging. It is caused by a disease that affects the brain. In the absence of disease, the human brain often can function well into the tenth decade of life.

The Impact of Alzheimer's Disease

Alzheimer's Disease is the most common cause of dementia among people age 65 and older. Dementia is the loss of memory, reason, judgment, and language to such an extent that it interferes with a person's daily life and activities. It is not a disease itself, but a group of symptoms that often accompanies a disease or condition.

AD is a major public health problem for the United States because it has such a huge impact on individuals, families, the health care system, and society. Scientists estimate that up to 4 million people now have AD. For every 5-year age group beyond 65, the percentage of people with AD doubles.

More than 34 million people are now age 65 or older. This number is 13 percent of the total population of the U.S. The percentage of people over age 65 will increase rapidly over the next few years as the "baby boom" generation reaches 65. In addition, the group of people over 85 - the group with the highest risk of Alzheimer's disease - is the fastest growing segment of the population. By 2050, 14 million older Americans are expected to have Alzheimer's disease if the current numbers hold and no preventive treatments become available.

Slightly more than half of those with Alzheimer's Disease are cared for at home, while the rest are in different kinds of care facilities. A recent study estimated that the annual cost of caring for one person with AD in 1996 was between $18,400 and $36,100, depending on how advanced the disease was and whether or not the person wasat home. The cost of care has been steadily rising since then. The national cost of caring for people with AD is now thought to be about $100 billion every year. The cost of care is not only financial. Families, friends, and caregivers strugglewith great emotional and physical stress as they cope with the physical and mental changes in their loved ones. Caregivers must juggle many responsibilities and adjust to new and changing roles. As the disease gets worse and caring at home becomes increasingly difficult, family members face difficult decisions about long-term care. The number of caregivers - and their needs - will steadily grow as our population ages and the number of people with Alzheimer's Disease in reases.

How Many New Cases of AD Were There in 1995? How Many New Cases May Occur in the Future?

Researchers recently projected the number of new cases of AD that could occur every year over the next 50 years if current population trends continue and no preventive treatments emerge. They estimate that the number of new cases every year will double between 1995 and 2050 - from 377,000 to 959,000. Two factors will combine to cause this large increase: the fact that the risk of Alzheimer's Disease increases as people get older. The growing numbers of older people, especially those over 85.

The annual number of new cases will begin to climb sharply around the year 2040, when all the baby boomers will be over 65.

Unraveling the Mystery

Thinking about Alzheimer's disease leads to questions such as: Will I get it? What causes it? What can be done to cure it or prevent it? Scientists ask the same types of questions, and this booklet describes their search for answers. It is written for people with AD, their family members, friends, and caregivers, and anyone else interested in AD.

Unraveling the Mystery has two sections. Part 1 gives readers the basics - it's a "walking tour" through the brain. Illustrations with text show what a healthy brain looks like and how it works, and what happens in a brain affected by Alzheimer's Disease. Part 2 talks about current research and the advances that are bringing us closer to ways of managing, and eventually defeating, AD. Throughout, terms in bold are defined in a glossary at the end of the booklet.

The end of the booklet also includes a list of publications and resources that family members and caregivers may find useful as they live day-to-day with the disease.

A booklet like this would not have been possible 25 years ago. Other than some basics, we knew very little about AD. We did not even know it was a distinct disease, different from normal aging. Today, we know much more about Alzheimer's disease - what it is, who gets it, how it develops, and what course it follows. We are better able to diagnose it early and accurately. We even have some promising leads on possible treatments. Recent studies are also beginning to focus on factors that might be used to reduce a person's risk of developing Alzheimer's Disease in the future. Research conducted over the last two decades has deepened our understanding of this devastating disease. It also has expanded our knowledge of brain function in healthy older people and identified ways we might lessen normal age-related declines in mental function.

About the Author

www.nia.nih.gov
NIA, one of the 27 Institutes and Centers of NIH, leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. In 1974, Congress granted authority to form NIA to provide leadership in aging research, training, health information dissemination, and other programs relevant to aging and older people.