November 13, 2013
The Long Goodbye
The scary thing about Alzheimer’s is the lack of answers. You are told what the disease is when you receive the diagnosis. However, you do not know why it is occurring, how the disease will progress, and when the end will come. You play the waiting game, and there are no winners.
Each person’s brain is different, so it seems logical that brain diseases would vary person to person. But Alzheimer’s, a terrifying neural deterioration, is particularly individualized. A person can receive a diagnosis and remain in decline for an additional 15-20 years. Conversely, they could just as easily deteriorate drastically over a period of months.
There are identified stages of Alzheimer’s, but the lengths are not defined. Alan McStravick of redOrbit refers to the disease as “The Long Goodbye.” I think that this phrase is hauntingly accurate. You slowly watch the person that you love disappear within him or herself. They become a shell of the individual that you knew.
The only sure thing is that it will end. At some point the person will have little to no mental capacity left. It is unlikely that they will respond to their surroundings or recognize loved ones. You do not know when the end is coming. You merely hope for its arrival. Oftentimes family members have finished grieving before the person has died. From their perspective, their loved one checked out a long time ago.
Would answers help? The process is miserable, but would defined lengths of misery lessen the pain? Many would respond yes. If they were told how long they had to watch and wait, perhaps they could be better prepared and adjusted.
Researchers at the Columbia University Medical Center believe that they have developed a mechanism that can accurately predict an individual’s “timeline” following an Alzheimer’s diagnosis.
Referred to as the Longitudinal Grade of Membership (L-GoM ) model of Alzheimer’s progression, this mechanism recognizes the nuances that affect an individual’s diagnosis. To illustrate the power of this model, the researchers detailed the stories of two 68 year old patients who were diagnosed with Alzheimer’s.
The two patients had the same mental status score, but one was experiencing delusions and was more dependent on their caregiver. Based on these small deviances, the L-GoM model accurately predicted that one person would die within three years and the other would live more than ten additional years.
This is a rather stark contrast. My question: Do you want to know? Does the ambiguity make it more manageable? Does the patient want to know how much time they have left? Does the family want to know how to plan? Many of us know people who have received an Alzheimer’s diagnosis. We have watched the disease take its toll. This model offers a timeline.
In my opinion, this model is most useful when it can be coupled with a treatment plan. I think being told that you are going to decline rapidly or remain unresponsive for a number of years would be devastating. Personally, I would not want to know.
The only blessing of Alzheimer’s is that eventually the patient has no idea what is going on. If they were aware when the end was coming, I think anxiety would be unmanageable. Until this technology can be presented with a “plan of action,” I think it could do more harm than good.
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