This seems to be such a common question and issue. Everyone wants to know the answer. I have blogged about this in the past, but the question still comes up all the time. If it is not a mental illness does that make it better? If it is a mental illness, well does that somehow make it worse? Does it make AD less real if it is a mental illness.
When my mother developed AD, it was so shocking, so furious, so heart-breaking, I don't remember ever really pondering that question, because I was so overwhelmed, so bewildered, my head was spinning. Being seventeen at the time, it felt like I had a million things on my mind already. The whole process was like a waking dream.
My book "When Can I Go Home?" speaks to that waking dream. It also speaks to the process of me becoming a doctor and a psychiatrist- much of that process happened while she was dying from the disease.
For me a related question is, did I ultimately choose psychiatry as a specialty, because my mother had AD, and she had it long before I was anywhere near going to medical school.
I mean I could have entered and specialty right? God knows my life would have been a lot different if I had. Life would have been a lot less of a financial struggle, I would not have faced so much disdain and prejudice, because of the horrible stigma we place on mental illness. That stigma is why the question of AD being a mental illness is so important and why we place so much emphasis on it.
People with mental illness face it every day. It is parallel in my world. Let me explain what it is like. For so many people there is something uncomfortable, disquieting, "icky" about being a psychiatrist and mental illness in general. When someone learns a person is a physician, it immediately conjures up biases, stereotypes, preconceived notions. People might think you are smart, hard working, or a weasel, that your are no better than them, and all the usual chip-on-the-shoulder things and biases we have about physicians. Some still respect you as a person more than if you were not a physician.
But as soon as you advise your are a psychiatrist, my God, do peoples' expressions change. Many people get that "icky" disquieting feeling. They are also let down in some fashion. The ideal of a physician and all the underpinnings is gone. "Not the same as a real doctor"
Why do we consider the whole concept of mental illness as something subhuman, something more related to morality than a clinical manifestation? In our prejudicial minds the leap between someone having mental illness and their questionable integrity and questionable character is not a leap, but a thin blurred line.
So if you are a good person with good character from a family of good and decent character and someone gets AD, does that mean somewhere along the lines there was a breech of character, someone did something wrong? If it is NOT a mental illness then no intergrity or character issues right? Sort of off the hook. Moreover if it is a mental illness, then on some level would that not mean it is less than real- at least in the sense that if the person tries harder, than maybe it will go away. If we just figure out what that character flaw is.
If you have mental illness you know what it is like to be treated a little bit less than human, to have your character called into question, that prejudice, that bias, that icky feeling and manner other people present to you because you have mental illness. If you don't have mental illness, imagine what it would be like to have to live with that bias. I mean real imagine it for a second.
So AD is not a mental illness or a "functional" illness in this way: You can see it, you can find the amyloid plaques, we are moving closer to being able to test for it- checking spinal fluid, biomarkers. Therefore it is legitimate. It is real. We have tests and we can tangibly SEE it. But here is the problem, this is why we want to know if it a mental illness. We as family members are in the twilight zone. A gray area:
The everyday CLINICAL world lags behind the RESEARCH world, by 10 or 15 years.
Right now you can't routinely see it on a blood test, or a really good MRI or CT, you can see non-specific atrophy of the brain consistent with it, but you can't really definitively see it, unless you look at brain tissue on an autopsy, after the person has died from it. At least in 2010, thats the everyday reality we are all faced with.
Here's how Alzheimer's is a mental illness is 2010. We can't really see it on an x-ray or any blood test that you or I or most Americans may have access to. Nor with the deterioration and reduction of health care delivery, non of us are going to have much access to the evolving sophisticated research anytime soon, the same research that politically helps legitimize Alzheimer's disease.
-Alzheimer's disease affects behavior, actions, thoughts feelings personality, cognition, a persons manner of relatedness to others, all those things we conventionally equate with "MENTAL ILLNESS.
My mother had changes in her personality, and behaviors, sometimes it was odd, sometimes bizarre, sometimes not, but there were changes. Most AD victims do have these at some point. AD makes your brain deteriorate. You brain regulates behavior, personality, something has to do this and it is the brain. behavior and personality are not random or coincidental happenings.
A neurological disorder is so legitimate, a psychiatric disorder is not legitimized in our society.
The best answer to the question is "Alzheimer's disease is a progressive neurological disorder with overlapping psychiatric symptoms. Alzheimer's disease is a progressive deterioration of the brain. The brain regulates behavior and personality. In our society we have severe bias and prejudice toward mental illness and pass judgment harshly on psychiatric disorders but not neurological disorders." That's how I would answer that right now. There just is not a perfect yes or no answer. The correct answer is both, the more correct answer is, it does not matter, If you say yes it is a mental illness, you would not be incorrect but it immediately changes our views of the disease, based on our biases. If you say NO it is not a mental illness, we all breath a sigh of relief. We feel a bit better in that disease is legitimate.
In the end the question does become irrelevant as you or your family member struggles with the diabolical process. It does not really make the process easier to know it is not a mental illness.
Remember people with mental illness are just people, they have feelings too, hopes, dreams, just like everyone else. People with mental illness can develop Alzheimer's disease, just like people who never had mental illness can also get Alzheimer's. The behavior and personality changes associated with Alzheimer's can be at times crazy, bizarre, strange weird, it is upsetting and disquieting. The person is not doing it on purpose, It is not a sign of character, or something we have done right or wrong in our lives. The same can be said for mental illness.
The health care world incidentally and ironically has some of the strongest and worst biases about mental illness. As a psychiatrist, I face it from other doctors, maybe not as much as from other non-physicians that work in the health care field, but it is there. There are also so many people in the Alzheimer's world- caregivers, health care workers, bureaucrats, that have this bias, it is so Hypocritical, two-faced and not very humane, but it is where we are at as a society. Something we don't like to talk about or admit, Alzheimer's=neurological, mental illness= uncomfortable, "icky". Let's admit that prejudice and start growing up and working past it.
Until we start getting over ourselves and becoming truly humane towards all disease states, and people suffering from them, including mental illness, you are not going to see much true progress. towards treating the aging population with respect, dignity and honor. After all if it is easy to secretly judge people with mental illness, it is not easy for the fascist, intellectual, politically superior to exploit this?- to place less value on the aging and the elderly and those with Alzheimer's disease? Get it? We are talking out of both sides of our mouth when we distinguish Alzheimer's as not a mental illness. It is easy to exploit that paradox, that is part of the reason why we have not advanced much in our society in our understanding of Alzheimer's, and we ponder the question of AD being a mental illness. It is a vicious circle. Throw in the health care debacle and limited resources, and you are one step away from the E word, euthanasia.
Hence cost savings- euthanasia. free thinking atheist, cool people with certain correct, political views= forward thinking know- it-alls? utilitarian,- grow up.- most people will get old some day, and all that youth driven narcissism won't really matter will it? "How many people under thirty years old, say "well if I ever get like that just shoot me!"
It's all our faults, it's how we are raising up our kids, generation after generation.
Here is an a paradoxical, optimistic point, I believe the legitimacy of AD will be hammered in stone (in other words the clinical world will catch up to the research world, and we will have everyday access to the legitimizing tests that unequivocally convince us that AD is a clinical disease) this will happen long before the stigma and prejudice toward mental illness is obsolete.
If I was a policy maker, or if I worked for a nice big non-profit and could lobby for AD all day, I would lobby that the question of Alzheimer's disease being a mental illness is irrelevant. I wouldn't spend all day working to draw that line ion the sand, that distinction for society. It Exacerbates the stigma, to argue the point.
So my mother's Alzheimer's disease was a factor probably in me going into psychiatry, but not THE factor. There was no one main factor. It certainly taught me about empathy, and emotional pain and loneliness, ands societal prejudice, something most psych patients deal with on a day to day basis. (and family members of an Ad victim.) Yes its true I saw the emotional anguish the disease causes, I lived it. I thought psychiatry was the most humane of all medical specialties, some days I still think that, other days not. After all, a psychiatrist talks to their patients, understands there patients from a human aspect, not a disease aspect, or so most of us thought. That is why most went into it. It seemed to bridge the gap between the art and the science of medicine in so many ways, in ways that nobody cares about much anymore, in ways society places little value on- IE. humanity. Cost-effectiveness supersedes humanity. that's the reality, throw in some power-drive economics and political correctness and well you have more bias and prejudice but yet we still convince ourselves everything is okay.
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