Oh, the stigma of having a mental illness! Once we got the diagnosis of dementia – Alzheimer Disease my heart sank and I thought: “How do I cope with a mental illness?” It was an honest mistake. Dementia of which Alzheimer Disease is the most prevalent form is NOT a mental illness. Yet, I too immediately classified this brain disease as mental illness. It was easy for me to grasp the outcome of a stroke, or brain aneurysm, but deterioration of the brain without such a direct cause was suspect and to be shunned. Yes, we have come a long way in recognizing what mental illness is but there is still a stigma about it and since dementia concerns the workings of the brain it all gets lumped into that basket of things not understood. It comes down to being ignorant, not knowing, a state we dislike, so we stigmatize.
Persons with a mental illness are no longer shut away in an asylum, or ‘madhouse’. Both understanding and treatment have advanced where we now recognize mental illness as just that, a mental illness. On the other hand dementia is a physical illness. Although this disease is being studied and research abounds there is still not a definitive cause for the more than 120 types of dementia that have been identified so far. Technical and medical terms like beta-amyloid protein fragments usually referred to as plaques and tau or tangles are batted around. I now can bat around such terms with understanding but they are the mechanics of a disease that attacks the brain and leads to death. You can begin to understand the complexity of the disease when examples include Lewy Body, vascular, frontotemporal, Parkinson’s disease and even Cruzeveldt-Jacobs Disease which is the human form of what is commonly called Mad Cow disease. Naturally the latter is an example not trotted out too often as the word ‘mad’ is a red flag to any raging bull or misunderstood brain disease which can lead to even more stigmatization.
Another honest mistake is to think that all these numerous forms are just a different kind of Alzheimer Disease. Like Alzheimer Disease these are types of dementia. In fact Lewy Body has its own abnormal protein called alpha-synuclein buggering up the works in the brain. Each one identified has its own pathology and just to make life more difficult there is also mixed dementia which is now recognized as being more prevalent than previously thought. That is usually a diagnosis which is a combination of vascular dementia and Alzheimer Disease. It signifies too that the two main engines of our body, the heart and the brain are both compromised. I think since research is ongoing we could wake up one day and hear that ‘mixed’ is not only two, but three or four or more ganging up on one brain.
My Bert is a classic case of Alzheimer Disease. The last doctor told him his blood pressure was better than many younger people, to which Bert replied: “I am only 19.” I was not going to correct him to say he was a toddler in the brain department! Yet, it is true that my Bert is healthy. He eats well, has not put on or lost weight. Whatever negative symptoms he exhibits, and there are many, all stem from those darn plaques and tangles that are filling up his brain, interfering with the memory and communication processes. Messages are confused, delayed, misunderstood or not understood at all. We are both frustrated.
It is uncharitable to stigmatize anyone for any reason. We have had the honour to meet and become friends with a most accomplished, outstanding citizen, and the epitome of a gentleman who had actually been institutionalized in a mental health facility twice. He was completely cured and felt enormous gratitude for the professional help he received. He acknowledged the fact of having a mental illness. He knows the difference between that and dementia. Many of us do not. However we can learn.
The Meander: A doctor making rounds in a Mental Health facility sees a patient writing furiously. “What are you writing?” He asks.
“Oh, who are you writing to?”
“What does it say?”
“How the heck would I Know? The postman hasn’t come as yet!”
A doctor making the rounds in a Memory Care facility sees a patient painstakingly forming letters on paper.
“You seem to be writing a letter.” He says.
“Are you writing to a friend?”
“What does the letter say?”