This is the title of a section of John Zeisel’s ‘I’m still here’. It’s all very obvious once you’ve read it, but it’s really helpful to have all this set out so clearly.

Zeisel differentiates between the primary symptoms of Alzheimer’s disease, the secondary symptoms and the tertiary symptoms (which may not be symptoms at all, but rather natural reactions to social and physical environments).

The primary symptoms are directly attributable to either cognitive or functional impairments. Memory difficulties are the most obvious example of cognitive impairment but executive function (referring to our ability to organise the complex sequences of activities involved in, for example, using tools and even in the activities of daily life, such as dressing) is also very significant as are speech deficits.

Secondary behaviours would not occur if it were not for the primary symptoms but are not immediate reactions to them. So a primary symptom might be difficulty in controlling ones impulses but if this leads to aggression, as it can do, it isn’t the case that aggression is a primary symptom, rather it is a reaction to not being able to handle what is happening to the person. It’s important to distinguish between those secondary behaviours which are disturbing to others and those which aren’t. There’s a tendency to just accept the latter  but it might be quite possible to help a person who is apathetic and listless by involving them in meaningful activities, for example.

Tertiary symptoms are behaviours that may not be symptoms at all. Two examples Zeisel gives are things such as withdrawing from participating in meaningful activities and uninvoked aggression.

Then he discusses the nonsymptoms which he classifies as caregiving nonsymptoms, social environment nonsymptoms, medical treatment nonsymptoms and physical environment nonsymptoms. I’ll return to these in a future post.

The reason why this kind of analysis is important is that once you accept the approach it is clear that at least some of the secondary and tertiary symptoms might be susceptible to treatment. And Zeisel points out the difference between cure and treatment: As yet, there is no cure for dementia, but a lot of the symptoms and nonsymptoms are susceptible to treatment.


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