Unravelling the Mystery of Alzheimer's Disease

Main Category: Caregivers / Homecare
Article Date: 05 Jul 2004 - 7:00 PDT


Over the past few decades, Alzheimer's disease has emerged from obscurity. Once considered a rare disorder, it is now seen as a major public health problem that has a severe impact on millions of older Americans and their families.

Research on Alzheimer's disease has grown accordingly. The small group of pioneers who conducted research on the disease in the 1970s has expanded to thousands of scientists in laboratories and institutions all over the world.

The lead agency for Alzheimer's research at the National Institutes of Health (NIH) is the National Institute on Aging (NIA), which launched its Alzheimer's disease program in 1978. Since then, the study of this disease has become one of NIA's top priorities. Several other NIH institutes also conduct and sponsor studies on Alzheimer's disease, including the National Institute of Neurological Disorders and Stroke, the National Institute of Mental Health, and the National Institute of Nursing Research.

In the private sector, the Alzheimer's Association, other voluntary organizations, and private industry are also working to combat this disease. They fund research, contribute to public policy decisions, inform and educate the public, and provide critical services to people with Alzheimer's disease and their families. Their support for research is critical in the effort to understand and defeat this disorder.

Thanks to these many groups, the study of Alzheimer's disease is moving ahead rapidly. This booklet explains what Alzheimer's disease is, describes what we have learned to date, and provides a glimpse into future directions for research.

Introduction

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

AD 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 AD 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 AD increases.

Contiues at the NIH website. Click here for full table of contents about Alzheimer's Disease.

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