Contributed by: Dennis Fortier, President, Medical Care Corporation
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We write about this topic frequently as the general media tend to be fairly inconsistent in their characterization of dementia. As we are careful to point out, dementia is the loss of cognitive capacity that results from various diseases, accidents, and medical conditions. In and of itself, dementia is not a disease.
Having said that, an important new perspective presented this month by Time might add ongoing confusion to this topic. In a well-written piece, based on a publication in the New England Journal of Medicine, researchers advocate the perspective that patients actually die of dementia. This perspective is akin to viewing dementia as a disease, not a symptom of other medical problems.
While I agree with the author's main point, that patients with dementia are suffering all sorts of systemic biological failures due to a progressive level of brain damage (and will most likely die from these failures), it is the underlying diseases that produce both the dementia and the death.
One key point in the article that I want to support and emphasize is this: For physicians and caregivers, it is important to recognize that, once demented, the patient's health may have reached such a poor state that a focus on palliative care is warranted over aggressive treatment of the underlying problems. While I think it would create undue confusion to define "dementia" as a disease and to identify it as a "cause of death", the point about approaches to better care is well taken and should be noted.
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There are so many layers to this topic. Mainly I think that the danger of calling dementia a "terminal disease" is the temptation for the person diagnosed with dementia, and as importantly, their families, to give up rather than make the absolute most of the rest of their lives. It is a disease that could last years and years, not a few months or years like terminal cancer. There is also the temptation, therefore, to do nothing: no medication to improve quality of life in the first few years for example, no cognitive therapy.
ReplyDeleteA problem that I have with the Time article is that the study they quote only studied people in a nursing home, who were presumably then, seniors. They do not mention a median age. They mention an average time frame of life expectancy of over 400 days, but do not say "from when." From the date the study started? The date the people moved to the nursing home? The date of original diagnosis? In addition, most of the illnesses that the residents with dementia got are a normal result of aging. I do agree that the brain is an organ that ages and then eventually gives up, leading to such things as organ failure or the patient not eating. However, the brain fails in people without dementia. Brain failure is not an indicator that dementia is a terminal disease.
I would like to have seen the study include people with early onset Alzheimer's. They would be able to factor out many of the causes of death typical in the elderly, and study causes of death of people with dementia who are only in their 50s and 60s.
Dementia is a symptom of numerous neurological diseases. Some of these are reversible, most are not. A PCP is typically not the person to delve further into the cause. Rather, the patient should be sent to a neurologist for an in-depth examination to diagnose the cause of the dementia. All too often, a patient is diagnosed with Alzheimer's disease without having looked at the other symptoms that may be present. Is the patient having problems with storing or retrieving memories? Can they perform sequential tasks from memory? Are there leep disorders, autonomic dysfunctions or hallucinations that are precursors to other neurological diseases such as Dementia with Lewy Bodies. Or, is it just a vitamin deficiency, or perhaps a thyroid problem; both readily treatable.
ReplyDeleteI will have to agree that the Time article made me question the fact that some of the data cited needed much more specific information that was well questioned by Ms Bramly. But the fact remains, that once diagnosed with Alzheimer's disease ,the eventuality is a gradual shut down of functions and death. The "how" and "when"is different for each person but the end result is going to be the same, Alzheimer's is a terminal illness. I have seen it happen with my Aunt and am now experiencing the journey with my husband. His losses cannot be reversed, it is just a question of time as to how and when Alzheimer's will consume him, he is terminal.
ReplyDeleteThe Time article is correct in calling Alzheimer's a terminal illness.
The previous comment illustrates the confusion that prompted me to initially write this post.
ReplyDeleteThe commenter correctly refers to Alzheimer's as a terminal illness and, in fact, there is no dispute about that. The dispute (and the confusion) come from calling "dementia" a terminal illness, which it is not.
I find these comments misleading. My husband is ill with some kind of neurological disease. He always exercised, ate very well, was not overweight, does not have hypertension, does not have high cholesterol. Many, many examinations and blood tests have been done. We had a brain scan at the AMEN clinic. There suggestions of higher anti-depressants worked for a while and then he had a major incident and we stopped their protocol. He reacted badly to all the memory drugs and Parkinson's drugs to control his physical loss. He is being treated for thyroid disease, but it hasn't made any noticeable difference. He is taking all kinds of supplements. It's nice to say there is treatment out there, but no doctor we have talked to suggests that this won't kill him.
ReplyDeleteWe are doing the PK protocol under Dr. Patricia Kane's suggestions. There is slight improvment, but nothing dramatic at all.
Seems like you should outline what kind of treatment makes so much difference. And I know most people make poor life style choices, but that is not our case and he is very, very ill. I am doing everything I can to make his life meaningful and productive but it is a full time job. Kate in Oregon
Is this anything we didn't know?
ReplyDelete