I wrote last week that I dearly desired a map or guidebook that would help me navigate the world of Alzheimer’s that Harvey and I were dropped into. Although we were supported and understood, I still felt lost.
One of the instruments that gave me some structure in which to frame our experience was an article about the stages of Alzheimer’s disease.
There are actually several ways to stage this disease, though, making the search for this instrument harder that one might think.
The most simple staging names just three: Mild, Moderate, and Severe. To complicate things further, these three stages may also be referred to as early, middle, and late.
Mild stage Alzheimer’s disease connotes that the disease is mild enough that the patient can function independently with only close friends and family taking notice of some cognitive issues. Severe stage would include patients that are totally dependent on caregivers for most of their needs. Moderate stage, therefore, includes patients between these two extremes. The Alzheimer’s Association has a good, easy-to-understand article here: https://www.alz.org/alzheimers-dementia/stages
The advantage of the three stage schema is its simplicity. It’s easy to discuss the disease this way with friends and family as well as in a doctor-patient relationship. But I wanted more in-depth information, something that might give me a more precise timeline. I knew, and our neurologist confirmed, that there is no way to gauge how an individual patient may progress through the disease. Every patient’s course is different, but still, I wanted something more specific.
The Mayo Clinic’s website lists five stages: https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448. Preceding the three stages already discussed, they add preclinical Alzheimer’s disease and mild cognitive impairment due to Alzheimer’s disease. Still not the help I wanted, but it was interesting.
Preclinical Alzheimer’s disease means that changes can be seen on a PET scan, indicating the presence of plaques, but there is no cognitive impairment. This stage can last for years and is usually only noted in research trials. We know that patients who develop Alzheimer’s disease do indeed show changes in the brain years before symptoms emerge. This information is useful for clinical researchers. If we can develop drugs to give to patients at this most early phase of the disease, maybe we can halt the progression much earlier than we can with the medications we currently use. But just because plaques can be seen in the brain, it doesn’t mean a person will develop Alzheimer’s disease.
I’ve briefly discussed mild cognitive impairment before, but in review, this stage implies that only the patient, and those closest to him or her, are aware of some memory lapses. There is no impact on their vocation or relationships. Not everyone diagnosed with mild cognitive impairment goes on to develop Alzheimer’s disease, but the majority do.
WebMD lists seven stages:https://www.webmd.com/alzheimers/guide/alzheimers-disease-stages#1 This staging expands the simpler mild, moderate, and severe labeling by adding moderately severe and very severe; as well as retaining normal (preclinical) and very mild (mild cognitive impairment). I found this to be more helpful.
Remember, though, that a patient may have symptoms in two of the stages at once. It’s not a clear delineation between them. More of a gradual shift. I often noticed a new cognitive loss one day that disappeared for a while, only to recur and be persistent later on. It was like a preview of what was to come.
It’s confusing to have so many different staging schema. I’m going to tell you about another one next week. These stagings are maps of sorts, but they are still not perfect, because there can be no perfect map of Alzheimer’s world for every person affected. Maps and timelines are as individual as, well, individuals.