When initially diagnosed with a disease, most people want to find out as much as possible about it, including its likely trajectory. Responding to this need, different Alzheimer experts have constructed models of disease progression, identifying the different stages of the disease. Unfortunately, they provide conflicting information.

 

Dr. Barry Reisberg developed a 7-stage guide in 1982 that is still in general use and adopted by the Alzheimer’s Association. The Mayo Clinic has a 5-stage tool. Web MD has a 3-stage tool. The National Institute for Aging also has a 3-stage tool, revised in 2011, but its stages are different than Web MD. Some staging tools include pre-clinical phases, and though there are many symptoms in common, they appear in different stages. All of them recognize that the disease progresses very slowly, but the projections of how long people will live with Alzheimer’s range from 8 to 25 years.

 

Too Much Information, or Not Enough?

 

The guidelines that itemize a long list of symptoms do not identify those symptoms that are likely to develop, and those that are rare. This undifferentiated approach creates an unnecessarily frightening picture of the disease. Families can spend years fearing the onset of violent behaviors that may never materialize. There is very little information available on the prevalence of violent behavior. However, commentators say that it is rare and sporadic. One estimated that only 5 to 10% of patients develop violent behavior.

 

At the other extreme, some people assume that patients will develop all the listed behaviors. When they realize that their loved one does not have all of them,  they conclude, wrongly, that their loved one doesn’t have Alzheimer’s.

 

Accuracy

 

People look at staging guides for accurate information on the progression of the disease. The range in stages, symptoms, and estimated disease trajectory found in Alzheimer guidelines eloquently speaks to the fact that Alzheimer’s does not have a consistent trajectory. Efforts to provide anything but a general description of the mental and functional decline of Alzheimer’s patients can be misleading.

 

Stigmatization

 

People looking at the staging descriptions are understandably shaken by what may lie ahead. Not only are families made fearful of their futures, so is the general public. They read about violence and personality transformations and conclude that Alzheimer’s patients are a risk to the community. One reason for the social isolation of Alzheimer’s patients lies in the misperceptions of the general public about what the disease does to people, misperceptions that are reinforced by some of the staging guidelines.

 

Alternatives

 

People use staging guides because they want to know what to expect. But as some wise person observed, “Once you have seen one case of Alzheimer’s disease, you have seen one case of Alzheimer’s disease.” Here are some general observations that may help:

 

• Every patient will have a unique response to Alzheimer’s disease and is unlikely to exhibit all the symptoms described in the staging guidelines. However, over time expect an Alzheimer’s patient to be unable to process new information, to exercise executive functions, such as planning and organizing, or to complete activities of daily living (dressing, bathing, personal grooming, etc.) without assistance.

 

• Some of the more troubling behaviors associated with Alzheimer’s can be a frustrated effort to communicate, or can be caused by an underlying health problem, such as a urinary tract infection or an adverse reaction to medication, which can be addressed.

 

• The disease progresses very slowly, so most Alzheimer’s patients will have many years when they are capable of a great deal and families should make the most of this time.

 

• It is impossible to know how long it will take for the disease to run its course, and people often die of other health problems. Therefore it is important to plan for a long disease process, while knowing that its course will be unpredictable.

 

• People with Alzheimer’s have problems with memory, but their ability to love and be loved, and to enjoy the moment, remain.