What is Alzheimer's Disease?

Alzheimer's disease (AD) is a progressive, degenerative disease of the brain which results in impaired memory, thinking and behavior. It affects an estimated 4 million American adults.

At first, you may have trouble finding words, finishing thoughts, following directions, remembering names or other information. Later you may feel confused and frustrated, and have difficulty accomplishing tasks and making decisions. Other people may notice changes in your personality or behavior.

It is difficult to say how quickly these changes will occur, since they vary from person to person. Sometimes people with AD stay at the same level of functioning for several months or a year before noticeable changes occur. But the disease is progressive and, over time, it will make you less able to function in your usual activities.

In the meantime, though, there are several things you should know. First, and most important, you are not alone. There are many people- family and friends, health care professionals, and others-who can help you in the days ahead. Second, there are some things you can do that will help you cope with this disease, now and in the future.

Your Diagnosis

Although Alzheimer's disease is the most common type of dementing illness, it can be difficult to diagnose, especially early in the course of the disease. There is no simple test that will tell your doctor whether or not you have AD. What's more, there are many other conditions that can produce similar symptoms and are sometimes mistaken for AD. That's why it's important to see a doctor you trust and who knows about dementing illnesses to make sure the diagnosis of Alzheimer's disease is correct.

What Will Change?

Your illness will bring about many changes in your life-changes you may find it hard to think about. But knowing what to expect will give you more opportunity to plan.

You can expect to find increasing problems thinking and remembering, reading and writing, learning new information and making decisions. Eventually you'll have trouble doing familiar tasks like driving, managing money, or discussing current events. Later on, you may have difficulty dressing or bathing yourself.

These changes in your ability will also mean changes in your lifestyle and in your relationships with others. You may need to simplify your life and establish a comfortable routine.

Most likely, you'll have to rely more and more on family, friends, and professionals for help. In time, you'll need to entrust responsibilities to them, such as managing your checkbook, preparing your meals, and keeping up your house. If you're used to leading an independent life, or accustomed to taking care of others, it may be difficult for you to accept this new, more dependent role. Understandably, you may feel frustrated, angry, or depressed at times.

But learning to accept help can be rewarding, for you and for those you love. One thing that Alzheimer's disease won't change is your need for friendship and affection. You'll continue to need and appreciate the presence of other people-the touch of a hand, a smile, or a hug-just as you always have, just as all of us do.

Treatments And Disease Progression

The risk factors and influences upon the progression of AD are unknown. Increasing numbers of physicians believe that Alzheimer's disease is a complex, multifactorial disease, like heart disease or cancer, that can be caused by the interactions between numerous influences. Scientists are currently searching for new treatments that could slow or stop the degenerative process of Alzheimer's disease.

One drug treatment tacrine, or THA, was approved by the Food and Drug Administration in September, 1993 for the treatment of mild to moderate AD. In studies, a minority of Alzheimer's patients who tried the drug showed memory improvement, though only temporarily. The potential risks and benefits of this drug or any drug treatment which may become available should be discussed with a doctor in order to decide whether it is appropriate for you.

Day By Day

In light of all the changes you'll be going through, consider these practical steps to maintaining your own well-being:

Be patient. You have an illness that is affecting many of your abilities. Don't be too hard on yourself. Accept help when it's offered- and ask for it when you need to.

Don't be embarrassed to ask people to explain something or to repeat what they've told you.

Simply tell them you have a memory problem.

Don't be afraid to admit to family, friends and your doctor that you're sad or depressed. In many cases, your doctor can prescribe medication to manage depression, sleeplessness and anxiety.

Work with your family and friends to get the benefits to which you're entitled, such as health insurance, disability pay, Social Security disability, Medicare and Medicaid.

Write things down. Make notes to yourself and others, lists of things to do and reminders of where things are.

Put important things-keys, eyeglasses, dentures, money-in the same place every time. Make yourself a note of where that place is.

Take care of your physical health. Exercise regularly, maintain a healthy diet, cut down on alcohol or eliminate it entirely, and take your medicine as prescribed.

Continue to do the things you enjoy. Listening to music, drawing, gardening and playing sports are great ways to express yourself and stay active.

Spend time speaking with others who have recently been diagnosed with Alzheimer's disease.

Planning Ahead

Although you may feel perfectly capable, it is important for you to recognize your limitations. Here are several practical matters you should address. Taking care of these things now will help ensure that they go according to your wishes in the future.

Work

If you're still working, you need to begin to prepare yourself, both mentally and financially, for retirement. If you own your own business, you'll need to decide what should become of it when you can no longer handle it by yourself. Don't hesitate to get whatever help you need in doing this, whether it's a lawyer, a financial advisor, or members of your family.

Money and legal matters

Make sure that all your important documents - your will, your insurance policies, your mortgage and other financial papers - are the way you want them to be. Put them in one place, and be sure that someone - a family member, your lawyer, or a trusted friend - knows what and where they are.

Take the time now to designate someone to help you manage your affairs and make important decisions when you can no longer do so. You may need the advice of an experienced lawyer to make sure that everything is done according to your wishes. A lawyer can also advise you about steps to take to make sure you get the health care services you need and provide financially for you and your family.

Living arrangements

Make plans with your family or friends for adjustments in your living situation. This may include discussing where or with whom you want to live when you can no longer take care of yourself. Don't hesitate to go to a counselor, social worker, or lawyer for help and advice.

Issues relating to your care in the advanced stages of AD are not always easy to consider, but discussing these care strategies early on is important. Talk with family members about all the care options currently available, including nursing care, adult day programs and hospice services.

Medical care It's important for you not only to select someone to make important decisions about your medical care, but also to make your wishes known in writing. It is becoming more common for everyone to create advance directives for their future health care, financial plans, and feelings about sustaining life support. Again, check with a knowledgeable lawyer to be sure that this is done correctly and that your wishes will be followed.