With Alzheimer's, Planning Is... Health Article

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., director of 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.

The challenge

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.

A lot of changes will occur in those years. The impact those changes will have on you and your family will depend a lot on how active you are now in getting ready for what lies ahead.

Is it Alzheimer's?

Forgetfulness is common. So is confusion. But if forgetfulness or confusion becomes frequent or shows up in odd ways, such as repeatedly asking the same question, then it's time to talk with your physician.

The Alzheimer's Association offers this list of signs that should prompt a doctor's visit:

• Recent memory loss that affects job skills

• Difficulty performing familiar tasks

• Problems with language

• Disorientation of time and place

• Poor or decreased judgment

• Problems with abstract thinking

• Misplacing things

• Changes in mood or behavior

• Changes in personality

• Loss of initiative

The only way your doctor can tell whether you may have Alzheimer's is by examining you and ruling out other possible causes -- many of which can be treated.

Feelings remain

People with advanced Alzheimer's seem to have little connection with the world around them, so it's hard to know what's going on in their minds. It seems clear, however, that they do have an emotional life.

"What we know about their mental state is what we can infer from facial expressions and from their reactions," says Dr. Gillick. "For example, babies and animals will evoke a smile. And we can see them respond to music and watch them tap their feet while listening to it."

Even if people have lost the capacity to understand words, Dr. Gillick adds, they respond to people's tones and attitudes.

The fact that a person with Alzheimer's does not seem like the same person, she concludes, does not mean the person's life is terrible -- only that it's different.