"7 Stages” of dementia and why it isn’t accurate

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According to the Global Deterioration Scale (GDS) of dementia, there are seven stages of the disease process. I often think back to my first job out of graduate school at a Brookdale community in North Carolina. I loved the job, but one thing I didn’t like was having to “stage” my residents monthly. I had to go through my list of 50 residents and choose, from one to seven, where they fell on the GDS.

This really annoyed me. What I came to realize was this: people aren’t numbers. It is really hard to put people on a 1-7 scale based on their deterioration through dementia. This is what the scale looks like:

I’d have to put my residents as a “3″ or a “6″ depending on where I thought they were, but it was nearly impossible. I ended up putting a lot of my residents between numbers, like a “4.5,” because I couldn’t choose. There were also days that some of my residents were worse-off than other days.

Depending on the type of dementia and the person with dementia, the signs and symptoms of the stage were completely different. For example, I had residents with very early-stage dementia who had lost the ability to speak. Then, on the other side of the scale, I had people with very late-stage dementia who could still communicate quite well and remembered names, but had to be fed and were completely incontinent. 

Instead of staging people on a 1 through 7 scale, I recommend this: Early Stage, Moderate Stage, Advanced Stage. Though it sounds too simple, that’s the point. People move through dementia at completely different rates and often have completely different symptoms at different stages.

Here’s the scale I work off of, in my head, when I’m talking to people with dementia.

EARLY STAGE (not to be confused with the phrase “early onset,” which means it happens before age 65) – People are often aware of their impairments, although they are still functioning, to some degree, normally. They may have trouble with their memories. They may struggle to understand how time works, and end up missing appointments or getting confused over dates. They may mix up names, but not realize they did it. At this stage, friends and family may start to notice changes, but aren’t sure what to do about them. There may be some hoarding or other strange behavior.

Early-Moderate – I’ll talk about people being in an “early-moderate” stage when they don’t seem to fall in either category.

MODERATE STAGE – For me, this is the stage where people do not realize that they are impaired. They go about their days as if nothing is wrong, but it’s clear that they aren’t functioning at all normally. They often have a “far off” look in their eyes, as though they are present, but not truly there. People may struggle with eating, bathing, dressing, choices, mood, communication, ambulating, and more.

Late-Moderate – I’ll talk about people being in this category when they don’t fall in “moderate” or “advanced.”

ADVANCED STAGE – When I put someone into an “advanced” stage, it really means that I can foresee them passing away with in the next 2 years. They often have no idea what is going on around them. They do not know that they are at all impaired. They often have trouble with all of their ADLs and need caregivers to do everything for them. They often have trouble interacting with people around them. 

So, those are my stages. I think that they are easier to follow along, because people aren’t numbers. It’s really hard to assign someone a number when, on any given day, they may be more or less progressed in the disease process. 

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Rachael Wonderlin has a Master’s in Gerontology and is the author of two published books with Johns Hopkins University Press. She owns Dementia By Day, a dementia care consulting company.

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