*Originally published April 21, 2016, re-published with video February 21, 2020
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 eradicate Alzheimer’s disease, but do we even really know what that is?
An Alzheimer’s diagnosis is a sub-type of a dementia diagnosis, different sub-types are used to communicate differing symptoms and causations. In the field of psychology a diagnosis of dementia (which is now called neurocognitive disorder) including Alzheimer’s is based on symptoms, as are most psychological diagnoses. Most diseases however are diagnosed based on causation not just symptoms. Margaret Lock, in her thorough and thought-provoking book The Alzheimer’s Conundrum, explains why this distinction means that 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 correlation with age is undeniable. We do not know the exact culprit, or combination of culprits, of these experiences; therefore, classing it as a disease to be eradicated 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 when Alois Alzheimer discovered senile plaque and cerebral cortex thinning in a woman only 55 years of age. This woman also exhibited the psychological symptoms of what we now call Alzheimer’s. Upon autopsy neurofibrillary tangles were found in her brain. Tangles such as these 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 the tangles associated with Alzheimer’s can only be detected in a post-mortem autopsy. Without a diagnosis of probable Alzheimer’s it is highly unlikely the brain will be autopsied for the tangles associated with Alzheimer’s. This has led to a sore lack 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” (an amazing read in its entirety) 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 findings 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 eradicated, how does this affect people currently experiencing it? I have witnessed elders in the later stages of Alzheimer’s written off as no longer a part of our society. Their basic physical needs are cared for, but their deeper needs as human beings, such as love, purpose and community, are largely ignored. 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 eradicating 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.
Alzheimer’s the phenomenon is difficult to understand and, accordingly, something to be observed and studied. When something is observed and studied this offers a purpose, something to be learned. This perspective offers a reciprocally beneficial relationship for those experiencing the phenomenon and those that care about them (they can learn from each other and the phenomenon), which in turn increases the quality of life for all. Suddenly, Alzheimer’s and the person experiencing it are no longer pathological, rather they are interesting and valuable. We can continue to value the person who experiences Alzheimer’s the phenomenon, and their caregivers, as productive members 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. This shift does not deny the suffering that is present; this shift offers a very important ‘and’ to the conversation about Alzheimer’s.