The concept of SCD or subjective cognitive decline is very helpful in explaining what happened to my friend and colleague Paula a while back.
Paula can now report that she had a year long period of “subjective memory decline” for which she had no words to explain her mental confusion at the time it occured. She remembers the experience now that she has recovered. Because she was quietly confused and impaired during this period, she did not repeat things out loud, but she did repeat questions compulsively over and over again in her head; questions such as…why can’t I suddenly remember my address or phone number? Why can’t I think like I normally do ? What should I do next? What do I usually do? Why don’t I know? How do I make rice again [she makes rice every night so..] Why am I having trouble reading the grade 9 level newspaper when I have a graduate degree and usually love to read ? What is happening to me? SHould I call in sick to work? But what will I say? I am not sick, am I? I can’t explain this. I don’t know what to do….and so on….[Paula is usually very good at interpersonal communication so this is really unlike her].
This cognitive impairment lasted over a year and then lifted. It is very painful for a previously competent person to become moderately incompetent. It was very humiliating for her. And she felt so guilty because she was not doing her best and was letting people down.
She and I have been trying to figure out what she experienced since then for the past 20 years. We had descriptions of her experience but we did not have the appropriate words. We have learnt a lot since we started talking over coffee.
We have written a blog together, trying to figure out the best way to tell researchers that sometimes, moderate subjective memory decline can occur overnight [as it did for Paula] and then you lose the capacity to do much else but fret about it day and night silently.
That is what happened to Paula. When she tried to explain this to doctors, they typically did not understand the severity of the cognitive impairment because she looked OK and the cognitive impairment is kind of hidden and subject to incorrect assumptions on the part of the doctor, because you have suddenly become too impaired to communicate or explain.
You are a black box, if you will, and doctors and family and friends simply decide what is bothering you based on their past experience, they never think that you may have subjective memory decline instead of the more usual psychological and social issues plaguing themselves.
Would some of you know of a researcher or clinician who would like to interview Paula in order to learn more from a person who remembers now what she could not remember then?
On zoom , we are not restricted to any geographic area, we can speak with researchers anywhere in the world.
This is the first time we are reaching out this way.
We have done a lot of work. Paula now understands that she had milder attacks since the age of 19. Her conclusion then was that she had to read a lot in order to keep her mind in better shape. These attacks were remitting and relapsing and she never saw them coming so she just went on as best she could.
As she became older, she also had mild attacks, mostly in winter and mostly in the school where she worked [the building where she worked was very old, over 100 years old, and had many ventilation issues and was overcrowded and stuffy, especially in winter.
Paula never understood these symptoms and could not verbalize her mild level of impairments because she did not understand them during or after. And they always lifted so she then went on with her life.
We think that this is the reason why many people cannot report even mild instances of subjective cognitive decline. Paula’s mind when they occured was too fuzzy and no one ever noticed and she simply became average instead of really high functioning at work and at home. Who except her would notice that?
You may be surprised what we learnt about the more physiological aspects of Paula’s case and you may not agree with our findings but we would like to have a conversation about what it is like to have intermittent chronic periods of mild to moderate impaired cognitive function that are impossible to explain. We are very interested in cerebral blood flow.
We discussed this for 20 years and it took 20 years for us to begin to e able to put words to Paula’s experience…that is how unlike normal cognitive function this state really is……..and this is why no one would ever imagine that a person like Paula [or anyone else] would ever wake up suddenly impaired one day and remain so for over a year before it lifted and she was able to go back to her normal activities and level of competence.
As you may imagine Paula does not want this state to ever return, yet she still has attacks from time to time, although they may last 2-3 weeks before lifting completely. During the attacks she cannot access her accumulated knowledge on cognitive function-normal or impaired and again becomes at a loss for words. So no one knows.
We have not found many scholars that are interested but then, it took us a long time to discover the correct academic terminology.
Subjective cognitive decline is a useful concept for the beginning of any syndrome involving brain dysfunction, from delirium to dementia to all kinds of mental illness syndromes.
Researchers seem to be starting to understand this, which is a huge step forward, we think, we hope.