If the title, "The Long Goodbye," makes you think of the 1953 hardboiled private investigator novel by Raymond Chandler, you probably haven't spent a lot of time thinking about Alzheimer's disease.  Those three words are increasingly entering our vocabulary as a metaphor for this devastating disease that gradually steals memories, connections to family and friends, independence and eventually lives.

Alzheimer's disease is the result of the destruction of nerve cells (neurons) in the brain.  We don't know what causes it to happen, how to prevent it or how to cure it.  It's progressive, meaning that symptoms worsen over time, and irreversible.  Alzheimer's affects everything – cognitive ability, spatial ability, reasoning ability, decision-making ability, vision, balance, and even the immune system.

Today, over 5 million Americans live with some form of Alzheimer's disease and another 360,000 new cases are diagnosed each year.¹  And, since it's a disease that increases with age, the numbers will soar as our average life expectancy increases and baby boomers grow old.  The number of people in the United States with Alzheimer's is expected to more than triple by the middle of this century.

There are three known types of Alzheimer's Disease.²

• Early onset Alzheimer's:  This is a rare form of Alzheimer's disease in which people are diagnosed with the disease before age 65. Less than 10% of all Alzheimer's disease patients have this type.
• Late-onset Alzheimer's:  This is the most common form of Alzheimer's disease, accounting for about 90% of case.  It usually occurs after age 65 and may or may not be hereditary.
• Familial Alzheimer's disease (FAD):  This is an extremely rare form of Alzheimer's disease, accounting for less than 1% of all cases. It has a much earlier onset (often in the 40s) and can be clearly seen to run in families.

We know that advancing age is the number one risk factor for developing Alzheimer's disease and heredity plays an important but smaller role.  There are also several lifestyle factors that may be implicated, including high cholesterol, high blood pressure, being overweight, getting little exercise and eating an unhealthy diet.  Other probable risk factors are head injuries, brain inflammation and exposure to toxins.    

Being absent-minded does not equal having Alzheimer's disease.  Warning signs of Alzheimer's disease include: ³

• Memory loss
• Difficulty performing familiar tasks
• Language problems
• Disorientation to time and place
• Poor or decreased judgment
• Problems with abstract thinking
• Misplacing things
• Changes in mood or behavior
• Changes in personality
• Loss of initiative

Diagnosing Alzheimer's can be challenging, especially in early stages.  Quite often, both patients and their families will try to cover up problems.  In the past, a definitive diagnosis could only be made through an autopsy.  Today, a PET scan coupled with neuro-psychology testing can give doctors a fairly complete picture.     

Alzheimer's goes through three general stages called early, mid and late stage, or mild, moderate and severe.  In early-stage Alzheimer's, mood swings and the weakening of mental abilities begin to be noticeable.  People may begin to have trouble with driving, paying bills, and other tasks of daily life. As the disease progresses, people have difficulty with simpler tasks, such as using appliances, using the telephone, and dressing. By the mid-stage, major changes in behavior develop, and people may begin to forget where they are. In the late-stage, physical problems dominate; people have trouble walking, talking, swallowing, and controlling their bowels and other body functions. Eventually, the disease is fatal. 

The disease follows a unique course for each patient. We don't know how long it will take an individual to go through each stage and wide variations are possible. Survival could be as few as a couple of years in more aggressive forms of the disease, but some people may live for 15 to 20 years.  

New drugs have proven effective in slowing the progress of the disease.  One class of drugs known as acetylcholinesterase inhibitors, sometimes called cholinesterase inhibitors, work by preventing the breakdown of acetylcholine, a chemical in the brain that helps memory and other thinking skills. Donepezil is the generic name of a commonly prescribed cholinesterase inhibitor (in the show it is referred to by a brand name, Aricept). Two other generic cholinesterase inhibitors are galantamine and rivastigmine.  A newer drug that has also proven effective is memantine.  Recently, a multi-center study was directed by University of Rochester Medical Center faculty.  It concluded that memantine, when taken with donepezil, helped moderate-to-severe Alzheimer's patients maintain or in some cases improve their memory and other mental activities and their ability to do the tasks of daily life.  Memantine is one of a new class of drugs for treating Alzheimer's and the first approved by the FDA for advanced Alzheimer's patients.

Of course other factors, such as care and personal environment, are also important for people with Alzheimer's disease and their caregivers. Physical, emotional, and mental activities, such as music therapy and brain exercise (doing crossword puzzles), have shown to be helpful. 

¹ Alzheimer's Association, What is Alzheimer's?
² WebMD, Alzheimer's Disease Guide, September 09, 2008
³ Alzheimer's Association, Diagnosing Alzheimer's Disease
 

Learn more about Alzheimer's Disease:

Key Point 1: The time to prepare for the future is at the earliest stage of a disease when the patient, the family and the healthcare team can plan together.  A family needs to talk openly about the consequences of the diagnosis and what it means to the future.

Key Point 2: With many diseases, the care giving burden progresses as the disease progresses.  The caregiver's health is important not only for the patient, but also for the caregiver's long term wellness.