Alzheimer's Disease Wreaks Havoc on Identity

A diagnosis of Alzheimer's disease can be devastating to the individual and to the family, said Piero G. Antuono, MD, Medical College of Wisconsin Professor of Neurology and Director of the Memory Disorders Program at Froedtert and the Medical College of Wisconsin. Dr. Antuono practices at the Neuroscience Center at Froedtert & Medical College Clinics.

Memory loss might happen slowly, and by the time a diagnosis has been made, the disease is likely to have been present for years or even decades. When a memory problem begins to interfere with daily life, that is the time help and a diagnosis should be sought, said Dr. Antuono.

The Nature of Memory
"Memory in many ways defines us," Dr. Antuono said. "What makes us different is just that. It's our history of the past. It's culture, habits, things we've learned along the way. It is very worrisome when we start having doubts about our memories. It's our memories that define us more than the heart, or the liver. It's our identity.

Memory changes constantly as we revisit old memories and add new experiences. "It's a very dynamic, very fluid function," Dr. Antuono said, adding that memory can be influenced by many factors, including alcohol, sleep deprivation, sickness, medication, diet and more. "We all experience ups and downs. We all experience poor concentration, poor focus sometimes, because we've got things on our minds or because we feel sick."

When Memory Problems Persist
While all people experience memory problems, it is important to know when the issue becomes more serious and might indicate an underlying disease.

Assessing memory problems depends on the individual because "normal" is different from one person to the next. "We each have a different world in which we function. You really need to know the person, their cultural background and their social environment to make an assessment," explained Dr. Antuono. "Frequently when we're testing people, we find that some people appear 'normal,' but we have a sense they've been declining."

There are many possible medical causes for a memory problem. "There are conditions that can cause memory problems, such as strokes, neurological diseases like Parkinson's or Huntington's disease, medications, depression…those are the most common conditions we see in the clinic (besides Alzheimer's)," Dr. Antuono said. Alcohol and trauma are other possible causes. More rare causes include frontal temporal dementia or Creutzfeldt-Jakob disease.

Steps to a Diagnosis
"The diagnosis is made primarily by talking, collecting information from the patient and most importantly from the next of kin so you have an independent point of view, because the person with the memory problem cannot always recollect the events," Dr. Antuono said. "Generally, the first thing they forget is that they're forgetting. If we ask them what's going on with their memory, they say they don't have a memory problem or if they do, they minimize it." It's the caregiver or family member who can relate the details which can help determine a diagnosis.

"In Alzheimer's disease, the beginning of the memory loss is very slow, very gradual, and you can't really tell when the problem started," Dr. Antuono said. In retrospect, many families can point to past events and see the beginning of the slow decline.

Depending on the quality, frequency, nature and content of the memory problem, a clinical profile is prepared. A neurological examination usually confirms what the history reveals, Dr. Antuono said. A person who has stroke risk factors and previous strokes combined with signs of stroke is determined to have had a stroke; a brain scan will likely confirm diagnosis.

Dealing with the Diagnosis
"Having a diagnosis of Alzheimer's disease is as deadly as cancer," Dr. Antuono said. "There's a certain prognosis of years of life. Financially it can be a disaster for the family - no one pays for the care services required during the course of the disease because it is considered custodial care. Except for medications, the family is on its own. That can be a problem because it frequently takes two people to care for one person who has dementia at home." Everything must be monitored - from daily care to finances to medications.

For health care providers, Alzheimer's is a time-consuming disease. "The clinical visits are very long," Dr. Antuono said, "as are the phone calls trying to manage the behavior." Doctor visits include the patient, caregiver and many times, several other family members talking with the physician and with each other about how to best manage the disease. "You have family conferences which may not occur in a general practice setting.

"Frequently, the caregiver is also a 'victim' of Alzheimer disease. It's typically a daughter who quits her work, goes part time, moves or dramatically changes her lifestyle to provide care," Dr. Antuono said.

Treatment for Alzheimer's
The life span after a diagnosis of Alzheimer's disease used to be about two years, Dr. Antuono said, and now it's eight to ten years. "We don't have a cure, but we have managed to dramatically prolong life because we're much more attentive to the needs of the patient." From medical needs to safety issues, the treatment has progressed significantly in recent years.

"We have medications on the market that may slow the progression of symptoms, although the disease cause is not affected. People still die after eight, ten, or twelve years - but the way they get there is different. Instead of having a continual, gradual, progressive decline, we try to introduce a plateau that can last a year or a year and a half with one medication; then we add another medication, hoping to introduce another plateau."

"It's like saying you have pneumonia. I give you an aspirin. I'm not killing the bug that causes the pneumonia, but the fever goes away, the pains and aches go away. You can talk, you can walk, but the outcome is still going to be the same, however, you have a better quality of life."

Behavior is another aspect of treatment. The anxiety, restlessness and confusion that are hallmarks of Alzheimer's need to be managed, Dr. Antuono said. At different times, psychiatric symptoms such as depression, hallucinations and psychotic features must also be treated. Working with the caregiver to manage the patient at home is a crucial component and means teaching them how to anticipate a crisis, deflect a confrontation and create a routine, calming environment. "It's taking care of the caregiver so they don't feel burned out, or overwhelmed."

The Memory Disorders Program at Froedtert & the Medical College of Wisconsin provides comprehensive care to both patients and families through a specialized care team of physicians, neuropsychologists, nurses and a social worker who provide ongoing support during diagnosis and treatment to those affected by Alzheimer's disease.

Melissa Rigney Baxter
HealthLink Contributing Writer

MCW Health News presents up-to-date information on patient care and medical research by the physicians of the Medical College of Wisconsin.