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Friday, February 13, 2009

Patterns of progression in Alzheimer’s disease, Part 1

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. Over the next few weeks I am will be providing excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Dr. Barry Reisberg of New York University has been studying Alzheimer’s disease for decades, and one of the ways he gained notoriety early on was in developing what he called a Global Deterioration Scale (GDS) which outlines the order in which people with Alzheimer’s disease tend to lose specific skills. He came up with seven stages, although stage one is basically any normal adult, and stage two is any normally aging adult, so concern only arises if people enter stage three. The later stages also have subsets: 7a, 7b, 7c and so on.

For a long time his work was somewhat controversial. Opponents felt that categorizing people with dementia – even into early, middle and late stage categories – was subjecting them to labels that limited expectations of them. The number one tenet to remember in this field is: If you’ve met one person with Alzheimer’s disease, you’ve met one person with Alzheimer’s disease. In other words, everyone with AD remains a unique individual and deserves to be treated as that individual, not as a “disease.”

The National Alzheimer’s Association now uses Reisberg’s stages to help identify common patterns of progression, but always with this caveat: [I]t is important to note that all stages are artificial benchmarks in a continuous process that can vary greatly from one person to another.

Early stage patterns

Using Dr. Barry Reisberg’s Global Deterioration Scale, early stage dementia is equivalent to his Stages 3 and 4, middle stage is equivalent to his Stages 5 and 6, and late stage is equivalent to his Stage 7, but there is tremendous variation within each of those stages. For example:

In Stage 3, a person with AD may be unable to follow a map and consequently get lost driving to a new location. By Stage 4, he may still be able to find familiar locations, but he may misjudge the distance of an approaching car or be unable to interpret the meaning of a traffic signal, so that his impaired judgment makes him an unsafe driver. (Some would say he is an unsafe driver even in Stage 3.)
In Stage 3, a person with AD may have gone from misplacing her glasses (Stage 2 = all of us!) to misplacing an object of real value, often wedding rings or other jewelry. By Stage 4, she may start to hoard or hide objects for safekeeping, particularly if she is under the delusion that "people are stealing things." Sometimes, however, it may not be a matter of "hiding" as much as simply randomly "putting away" with no memory for where. People who want to try to preserve order usually find that labeling drawers and leaving notes works pretty well in these early stages.

We all lose our train of thought from time to time, particularly if we are under stress or there is a lot going on around us, but by Stage 3 you will have begun to notice in the person word-finding difficulties, particularly for names, that go beyond the expected. By Stage 4, the give and take of normal conversations may be slowed, but if you allow the person with AD to set the pace and scope of the conversation, many can still do quite well.

Next up: More on early stage patterns of progression in AD.

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