What it is like to have Alzheimer’s Disease:

Years before our diagnosis, we began making accommodation in our life for the loss of faculties that was slowly creeping up on us, changes so subtle that we barely noticed them ourselves, and as they were intended to maintain our apparent performance, intended to be completely invisible to others.

By the time we are diagnosed, we have all sorts of things going on – lists, procedures, linked procedures, pockets full of stick-it notes and bookie’s pens, etc, to enable us to carry on functioning as well as we can as closely as we used to.

Our failing memory does not immediately mean an inability to think logically, or make us immune to being hurt by thoughtlessness disrespect or insult - though one of the ‘benefits’ is that we quickly forget the hurt and resentment.

We may no longer know instinctively what day it is, or what we had for breakfast today (or indeed if we have had breakfast today), or why we have just translocated, or even why we have just moved our cursor! but some of us can still remember faces from long ago and retain our vocabularies (though sometimes struggling to remember the word, despite knowing it exists), enabling us to solve wordles and crosswords; We can still learn new things (gradually and eventually with cue cards!) and it is good for us and our brain stimulation, which might help in constructing new routes through the cortex around the damaged neurons, it is called cognitive resilience and is supposedly helped amongst other activities by learning new things, especially, music, language, and art; if you ever knew how to do time dilation calculations for objects moving close to the speed of light, you still can, but it doesn’t assist in determining what day it is or when or what our last meal was, or why we have just translocated!  Yes, there are some things we can no longer do so well, but the unaffected parts of our brain work as well as ever.

Going anywhere (especially overnight, and more especially for several nights), now needs fraught days of advance contingency planning because we have become useless at coping with the unexpected like a change of routine or a misplaced object.

Mostly we are capable of accepting where we are (we have had many years to slowly arrive), but lack of consideration from others, especially people who we would hope and expect to understand us, like bureaucrats and jobsworths (both public and private) is frustrating and annoying. Anyone dealing with the public should be forced to understand what the sunflower riband indicates (and also “the forget me not” medallion on it if that gets established). 

Do not ask us if we remember something, and get annoyed when we don’t – there is nothing we would like better than to remember. Do not ask us / tell us to remember something if we are not in a position to record it. Do not expect us to take anything away from a detailed telephone conversation except a general impression of having had a pleasant, confusing, meaningless, or annoying telephone conversation (GPs please note!).

On the other hand, be wary of falsely accusing us of having forgotten something, to cover up someone else’s failure, we can rarely (but not never) prove we haven’t forgotten something, and being aware of our difficulty we are likely to accept that we have indeed forgotten (even when we haven’t).

It is not patronising, insulting or unsympathetic to ask us if we have written down anything important arising during a conversation or discussion.

It is not very productive to ask us convoluted questions or a barrage of questions or demand quick replies, or finish our sentences while we fish for the word, and we need time to respond.

It is important that everyone we associate with, is also aware of what is going on in our heads, and that our behaviour, though seeming to be just as it used to be, may sometimes turn in unexpected directions and our speech and language may occasionally appear to be “inappropriate”, because the bit of brain that acts as our censor may not be working so well anymore