Tom Gilson

“Dementia diagnosis brings relief, not depression”–Why?

This made absolutely no sense to me at first:

‘The major finding is that both patients and their families feel relief, not increased anxiety, upon learning the [Alzheimer’s] diagnosis,’ says study co-author John C. Morris, M.D., the Harvey A. and Dorismae Hacker Friedman Distinguished Professor of Neurology and director of the Alzheimer’s Disease Research Centre.

‘Nobody wants to hear the diagnosis of Alzheimer’s disease, but even that is preferable to recognising there’s a problem and not knowing what it is. At least having the diagnosis allows people to make plans for the future, including treatment as appropriate.’

One reason an Alzheimer’s diagnosis can be comforting to both family members and patients, suggests Carpenter, is that it provides an explanation for what’s been going on with the patient. Caregivers, he notes, are often quick to attribute symptoms of dementia to the person, rather than the disease, and patients wonder if they are going ‘crazy.’ This study confirms that most patients, regardless of their degree of impairment, tend to experience a sense of relief after getting their diagnosis.

[From Science Centric | News | Dementia diagnosis brings relief, not depression]

My wife and I were at an Alzheimer’s patient’s funeral just last Monday. He was a friend’s father; we didn’t know him ourselves. One family member told me that in spite of the pain of the loss, his death “really was a blessing for him” because his last few years had been so difficult. It is truly an awful, dread illness.

So how can it be a relief to find out you have it? How can it help to know–for the study included people in very early stages of impairment–that this disease is going to rule your future? Only one answer seems to make sense to me.

Do you know what a relief it is when you find out a problem isn’t “all in your head”? If you poke around the web a bit–search for “it was all in my head”–you’ll read about people with Restless Leg Syndrome (which I happen to have), lupus, fibromyalgia and other syndromes with subtle beginnings. They’ve been told they’re imagining things, or they’re going crazy, or that they’re just trying to get attention. In other words, they have a psychological problem. When I first had RLS symptoms I thought, “what’s wrong with me–why am I so anxious?”

Then they find out there’s a genuine organic cause for their malady. The cause may not be well understood–diseases with well-understood causes usually get diagnosed more quickly–but at least there’s consensus that whatever it is, it’s physical. It isn’t mental. It’s not a psychological problem. They’re not going crazy. People with depression often find it some comfort to think of it as a chemical imbalance.

Note again what Dr. Carpenter said:

Caregivers, he notes, are often quick to attribute symptoms of dementia to the person, rather than the disease, and patients wonder if they are going ‘crazy.’

First, caregivers find out the person is not the problem, it’s the disease. Second, patients learn they are “not going ‘crazy,'” they have an illness. This really is a source of relief, the relief of finding out “it’s not all in my head.”

But of course it is all in their heads. Where else would it be? That’s the question that takes this decidedly important and personal issue to an even broader level of application.

There are those who believe that we as persons (our intellectual, emotional, volitional, and personality aspects, that is which is how I’ll use “person” for the rest of this article) are fully explained by the physical processes in the brains. On that “physicalist” view, the person is the brain and its processes, and nothing else. And on that view it makes no sense to “attribute symptoms to the person, rather than the disease.” The disease is in the brain and gradually takes over. There’s no distinguishing the person from the disease, because the brain is all there is. The brain is ruled by the disease. The person has actually changed. It’s foolish and contradictory to say, “she’s the same person on the inside, she’s just suffering a horrible illness.” Like it or not, on a physicalist view, the person really is going crazy.

That is most decidedly not my view. I have often contested physicalism. I’m convinced we are more than physical. Our personhood is both physical and non-physical, and the non-physical–the soul–is the core. We interact with the physical world through the physical body, but the physical body is not the sum total of the person.

On this view, Alzheimer’s patients’ relief upon diagnosis makes sense. There’s a genuine and proper distinction: “It’s not me going crazy, it’s my brain getting fouled up.” Caregivers are right to distinguish the disease from the person.

Daniel Dennett, a leading physicalist philosopher of mind, calls these beliefs mistaken, a “folk psychology” attributable not to any correspondence with reality, but to some evolutionary advantage it has conferred. I acknowledge his objection. I can’t tell you how wrong I think he is.

I’ve argued this on a more formal level, but this time, on an admittedly more emotional and informal level, I throw in my lot with the Alzheimer’s patients and their caregivers. The patients are not just their brains and bodies. They are not their disease. At their deepest core, they are not going crazy. Their souls survive the disease and, I think, actually escape it to become what they were apart from it. In the meantime they are experiencing a tragedy, but the tragedy is not who they are, it is something happening to them.

It takes a non-physicalist view of personhood to be able to say that. Most patients and their families have probably never thought about it in those terms–but surely if they view it that way, as most apparently do, they are on the right track.

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7 thoughts on ““Dementia diagnosis brings relief, not depression”–Why?

  1. This is true of just about any disease. Take ALS for instance. The sufferer of this illness has all the same mental faculties, their body just deteriorates around them. Without a diagnosis you will feel crazy and the physicians can actually make you feel crazy. You know that something is wrong with you, you cannot explain what it is, and physicians cannot either (or refuse to based on the strictures of their care giving network).

    There is therefore something to be said for patient intuition.

  2. True enough. I wouldn’t doubt it for a second. The question “why” in regard to Alzheimer’s is particularly interesting, though, because it gets into the mind/brain problem. That’s why I thought it was especially worth reflecting on.

  3. When I learned I had panic disorder, I felt a great amount of comfort and relief because I was assured that I wasn’t crazy and that it could be treated. Since then, I’ve had huge improvement and met others with the same problem that helped as well.

  4. I do not have a proper support system and i notice that my sickness is getting worse i am on medication and i am ddiagnosed schizophrenic i am noticing symptoms of dementia what can i do can there be help for me in greece before the problem gets worse i live in iraklio.

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