Dementia... in case you forget

As per Google:  Dementia (noun) – A chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.

As per Merriam-Webster: Dementia (noun) – A mental illness that causes someone to be unable to think clearly or to understand what is real and what is not real; A usually progressive condition (as Alzheimer’s disease) marked by deteriorated cognitive functioning often with emotional apathy.

A simple explanation of dementia was described to me by an employee at the Alzheimer’s office. She said imagine the synapses in the brain which are electrical currents traveling to a nerve ending where it zaps a nearby nerve-ending thereby completing its process. Now imagine that when the electrical current gets to the first nerve-ending, there is no other nerve-ending for it to zap onto. The thought contained in that first nerve-ending never gets completed and gets lost somewhere in the brain. Those thoughts are still there, stored somewhere in the gray matter, but retrieving them is problematic and sometimes impossible.

There is more than one type of dementia.

1. There is the ever looming Alzheimer’s Disease which slowly erodes memory and thinking skills which is the most common in the dementia family.
2. Frontal Temporal Dementia is a group of diseases which affects decision-making, behavioral control, emotion and language. They are:
1. Primary Progressive Aphasia – which gradually degenerates speech and language;
2. Progressive Supranuclear Palsy – which gradually degenerates walking and balance;
3. Corticobasal Degeneration – which gradually degenerates nerve cells that control mobility and vision;
4. Behavioral Variant FTD – which involves changes in personality, behavior and judgment.
3. Lewy Body Dementia – This type of dementia is associated with Lewy bodies and Parkinson ’s disease. It is the second most common dementia.
4. Mild Cognitive Impairment – This is defined in deficits in memory that do not significantly impact daily functioning. Memory problems are minimal.
5. Vascular Dementia – This is a subtlety progressive form of dementia causing progressively worsening memory due to reduced blood flow in the brain.

Riley’s primary care physician is concerned that his problems with memory and weakness in his right side are not improving. After Riley was released from hospice in August 2012, he improved from not being able to walk, feed himself or tend to his personal needs to being able to do all those things with little assistance. Now, today, he cannot walk without the assistance of a walker because he has very little balance and even then he falls almost daily. At the same time, his memory of current personal events has become shorter. It was the primary doctor’s hope that an appointment with a neurologist might be able to reveal the cause his decline.

Our appointment with Dr. Brain was informative as far as the damage from Riley’s previous strokes, but an MRI was needed to provide more clues. The results of the MRI were that he has brain atrophy, a common occurrence of excessive alcohol abuse which contributes to dementia, but there were no signs of any other condition that would cause dementia. Dr. Brain’s conclusion was that Riley is choosing not to remember things and that he only has mild cognitive impairment. He did not explain that this diagnosis was in fact a term for a form of dementia.

My reaction to this diagnosis was shock. I wondered if Riley had been “playing” me and really was able to function far better than he was showing just to keep me under his thumb. I could hear the words in my head, but something was just not right. It made no sense. Riley’s main goal is to be rid of me to stop me preventing his drinking and driving drunk. If he were truly capable of remembering and has no dementia, he would be making sure I knew so that he could prove that he was perfectly capable of living without me and managing his own life. We left Dr. Brain with me being more confused than ever.

Of course, those of you who have been following me know that I wouldn't just leave it at that. I started researching, making phone calls and trying to sort it all out. Drs. Google and Wikipedia have always given me great answers, but this time I added the Alzheimer’s Organization North Carolina, Merck Medical Dictionary and a whole array of other means of information. Below is a “in a nutshell”, condensed and straight to the point kind of things I learned in my quest for understanding.

MRI and CT scans do NOT provide a good determination of dementia. The only true test for dementia of any sort is a brain biopsy which cannot be performed while the patient is alive. It is done during autopsy. So you may not get an absolute “dementia” diagnosis until after the diagnosis doesn’t matter anymore – after all – the patient is dead.

The very best indicator of dementia is the observation of family and friends as to the changes in the behavior of the patient. It is helpful if the primary caretaking person, spouse, family, etc. – whoever is around the patient the most – keep a journal of odd or out of the ordinary actions of the patient.

As in the case of an alcoholic, there are other factors that can be documented that are helpful in determining the true state of mind. For example, the drinking history must be considered as to quantities of liquor over specific periods of time; how many times the alcoholic went through the detoxification process; has there been a diagnosis of hepatic encephalopathy or Wernicke-Korsakoff; has there been any strokes or heart attacks; and, is the alcoholic still drinking.

In Riley’s case there has been drinking to extreme, cessation of drinking, and back to drinking to extreme many times over and over again encompassing more than 30 years. While he most likely had hepatic encephalopathy long before, it was diagnosed in 2008 along with Wernicke-Korsakoff. Both conditions are brain function related and destroy the synapse connections. Riley had a stroke in 2009 which left him with some function and memory defaults, but not to the extreme. The heart attack and mini-strokes in 2012 further caused havoc in his brain. With all the trauma to Riley’s body and brain, the question shouldn’t be does he have dementia, but rather why wouldn’t he have dementia?

An MRI or CT scan can’t record as an image that is not visible. I tried to find a test that would measure the synapse activity, but found only research material using rodents. It appears that there is no test for the living breathing person who may have dementia.

My best measurement of Riley’s mental capabilities is what he presents to me each and every day. The inability to remember what’s for dinner tonight; the lack of ability to use the tv remote; his idea that if I would just let him drink his life would be so much better even if it kills him; the absolute insistence that he will be shot at the age of 103 by a jealous husband; the continual references to childhood friends and circumstances and inability to remember how to use the car seat controls; the contradictions in what he knows to be true and that the truth will not apply to him; his inflated sense of entitlement; and, thinking that he can still buy a new car for about $2,500  simply reconfirms to me that he has dementia. Add to all that the increasing inability to walk; his struggle with using the correct word in a sentence; his vision impairments; a difficulty swallowing; and a loss of emotional connections.

In fact, I believe he has Frontal Temporal Dementia, both Corticobasal Degeneration and Behavioral Variant FTD, which gradually affects all the functions performed in the frontal lobe of the brain. This makes sense to me because the toxins from alcohol usually settle in the frontal lobe region of the brain. I ask again – why would anyone not expect him to have dementia?

In my opinion, Dr. Brain’s diagnosis does not take into consideration the other factors of Riley’s condition. In all fairness to the good doctor, he has requested the records of a prominent forensic psychiatrist who recently examined Riley and found him to have dementia and lack competence to care for himself. He is doing further review of Riley’s case.