Alzheimer's disease isn't anyone's fault. We don't know what causes it, and we don't know how to prevent it.
That's important to remember, says Sam Fazio, Ph.D., spokes person for the psychosocial science, medical and scientific affairs for the national Alzheimer's Association. "We expect people to act in certain ways. When their behavior is difficult, we expect them to change in response to care or attention. But people with Alzheimer's can't change. They can't go back to being the way they were."
That means that if you or someone you love has Alzheimer's, your life will change. It does not mean that your life is over, or that you have no control over its quality. Learning and planning as much as you can now may have a major effect on your quality of life.
Alzheimer's is a risk that comes with age. It affects millions of Americans, and as the population ages that number will rise.
The search for a cure continues. "Some investigators think we are close," says Muriel R. Gillick, M.D., associate professor of ambulatory care and prevention at Harvard Medical School and author of Tangled Minds: Understanding Alzheimer's Disease and Other Dementias. "But we still have a long way to go."
Alzheimer's destroys brain cells, causing a decline in mental functions that affects memory, thinking, language and behavior. The first symptoms may be increasing episodes of forgetfulness and confusion. Over time, the confusion worsens, and people lose "executive function" -- the ability to solve problems.
"When you or I face a problem," Dr. Gillick says, "we may come up with a dumb solution, but at least we know how to approach it. Even simple problems like forgetting the key are overwhelming for someone with an advanced stage of Alzheimer's. That person can have no idea what to do next."
The steady decline can lead to inappropriate behavior. It can cause detachment from reality, anxiety, agitation and fear. It can lead to dangerous situations, such as wandering off. Eventually, the disease can affect the body and lead to serious health problems.
An early diagnosis gives patients and families "time to adjust and learn what they need to learn," Mr. Fazio says. Start by calling the Alzheimer's Association.
"The association has materials about the disease that can help you learn what to expect," Mr. Fazio says. The national office can help you contact one of 200-plus local chapters for everything from support groups to care giving services.
After a diagnosis
Before you begin planning, the Alzheimer's patient must understand there is a problem.
"People with Alzheimer's don't have a lot of insight into their problem," says Dr. Gillick, "and the condition gets in the way of making judgments."
Helping the person understand can be difficult. Patience and persistence are important, Dr. Gillick says. "Sometimes we say it will make family members feel better to make plans now." Enlist the help of your health care team.
These are the next steps for the patient and family:
Choose a proxy to make health care decisions when the patient can no longer do so. "If you have Alzheimer's, talk about what kind of care you will want to have," Dr. Gillick says. "What kind of interventions will you want to sustain life?"
Assess the patient's safety. "For instance," asks Dr. Gillick, "can the person boil water without creating a danger of fire?" An occupational or physical therapist can help evaluate the home and the person's abilities. Learn about the past: "Have there been incidents that suggest safety is already an issue?"
Decide which medications to take, if any. Experts disagree on the effectiveness of existing Alzheimer's medications, but some drugs may offer other health benefits. "There may be opportunities to participate in a clinical trial of a new drug or a new treatment," Dr. Gillick adds. Ask your doctor about potential benefits or risks.
The average length of life after an Alzheimer's diagnosis is eight years, but some people live as long as 20 years.