When you hear the word Alzheimer's, what comes to mind? Forgetting? Getting lost? Old-timers? Disease? For the past 35 years a war has been waged to irradiate Alzheimer's disease, but do we even really know what that is?
In my first post in this series we looked at how the field of psychology diagnoses dementia (which they now call neurocognitive disorder). From that post we can see the markings of dementia (including Alzheimer's), while descriptive of symptoms, do not point to a clear cause like most diseases. Margaret Lock, in her thorough and thought-provoking book The Alzheimer's Conundrum, explains why what we colloquially refer to as Alzheimer's is a phenomenon more than a disease:
In contrast to diseases in which bacteria, toxins, tumor formation or specific genes are clearly implicated in causation, it is more difficult to sustain consistent arguments and reach consensus about a phenomenon like Alzheimer's where, aside from the contribution of aging itself, causation is undeniably complex and remains, for all intents and purposes, unknown.
We know what the experience of Alzheimer's looks like from the outside and its undeniable correlation with age. However, we do not know the exact culprit, or combination thereof, of this experience; therefore, classing it as a disease to be irradiated is to put the proverbial cart before the horse. How can we hope to cure something when its causation is unknown?
Why do we think it is a disease?
It all started in 1906 with Alois Alzheimer who discovered senile plaque and cerebral cortex thinning associated with the elderly in a woman of 55 who had exhibited the symptoms of what we now call Alzheimer's, as well as neurofibrillary tangles. The tangles are now commonly assumed to be the cause of the phenomenon of Alzheimer's. There is a very strong correlation between the tangles he discovered and the symptoms of Alzheimer's disease. For a long time this correlation was taken as causation. The problem is that the tangles associated with Alzheimer's can only be detected in a post-mortem autopsy. If a doctor does not think someone may have Alzheimer's it is highly unlikely they would have the brain autopsied for the tangles associated with Alzheimer's. This has led to a sore lacking of data about Alzheimer's, aging and our brains.
Now this is beginning to change, and we have 678 nuns to thank. They are taking part in a longitudinal study on aging (The Nun Study), including the donation of their brains upon death to be autopsied. Sarah Robinson in her doctoral dissertation "Alzheimer's the Difficult Transition" summarized the initial findings:
The brain autopsies revealed that some nuns who had exhibited high levels of memory loss and cognitive impairment while living only had minimal plaques, tangles, or brain deterioration, while other nuns who showed absolutely no signs of memory loss or cognitive impairment while living had brains full of plaques, tangles, and deterioration. While most brains affected by Alzheimer's do have plaques and tangles, [David] Snowdon's [director of the nun study] research reminds us of the complexity of the condition, and of the fact that biology does not always predict symptoms and vice versa.
These finding suggest that there is not a clear cause and effect relationship between the tangles and Alzheimer's. This data, however, is new and small in comparison with the public understanding of Alzheimer's as a disease resulting from tangles.
Does it really make a difference if we see Alzheimer's as a disease or a phenomenon?
If, as is generally accepted, Alzheimer's is a disease to be irradiated, what of those currently experiencing it? During my work, I have witnessed elders in the later stages of Alzheimer's written off as crazy or ignored. We care for their basic physical needs, but largely ignore their deeper needs as human beings such as love, purpose and community. In the worst-case scenario, they are regarded as already gone -- just bodily shells of a person that once was. I believe this comes from seeing Alzheimer's as an incurable disease. Efforts are focused on irradiating the disease but what of those that are living it right now? What of their quality of life? What of their purpose? Viewing Alzheimer's as a phenomenon offers a different perspective.
Webster defines phenomenon as:
something (such as an interesting fact or event) that can be observed and studied and that typically is unusual or difficult to understand or explain fully
Accordingly, Alzheimer's the phenomenon, is difficult to understand but it is also something to be observed and studied.
This perspective offers a reciprocally beneficial relationship for those experiencing the phenomenon and those that care about them, which in turn increases the quality of life for all. Looking at it this way offers a purpose to Alzheimer's. We can continue to value the person who experiences it as a productive member of our society from whom we can learn and grow.
The shift in a word may seem small however the shift in intention can offer dramatic differences in the experience of life for those living with Alzheimer's and their loved ones.