Do dementia sufferers know their condition?
It's been written about a lot and experts seem to think that - yes - on some basic level people do know what is happening to their mind, and they take endless steps to hide the troubles from themselves and others...to present an OK face to the world.
I've been thinking about this recently cos I found Okaasan's interview with the doctor at her general health check recently.
I was hunting for the COSTCO card in the car and found the envelope of test results and interview where Yujiro had left it in the glove compartment...
As I have no morals at all, I got a kind student to help me translate it so I can peer into Okaasan's self-presentation to the world. Apparently Yujiro was in the room with her during this interview..."she lied!" he noted wearily. Of course he could hardly contradict his mum in front of her!
Okaasan scored very well for her age on the physical things and general life circumstances questions:
Do you go out on your own every day? (Yes)
Do you take public transport unaided? (Yes)
Do you exercise daily? (Yes)
Do you talk to people beyond immediate family? (Yes)
That kind of stuff...
She admitted to:
Do you do your own banking and financial affairs? (No)
Do you visit the homes of friends or family? (No)
But then a few little porky pies:
Do you do daily grocery shopping? (Yes!)...errr...well squid, and icecream, random veg., fish paste sausages....
Have you fallen over in the past year? (No!)
Do you have problems remebering the current date/time/month? (No!)
and my absolute favorite....
Do people around you sometimes say:"You've told me this story before?" (No!)
The last question is a Beaut!
How would a person with memory problems REMEMBER people saying this?
And who would say this to a person with dementia? No stranger would say it. No aquaintance would say it. Only very close friends and family maybe. And if they already realize you have dementia ...they are unlikely to be pointing out your failings.
It's a real chicken and egg situation.
Of course this is a very general, quick health and living cicumstances check-up and I expect the doctor knows there is a certain amount of Economy with the Truth.
But even so. It isn't very representative of Okaasan's current condition for the local health service records. She scored a very respectable 3/20 on the Daily Life questions and 1/5 on the Emotional Wellbeing questions.
I reckon 6-7/20 on the Daily Life would be a truer reflection of Okaasan in 2010.
I did think about suggestioning to Yujiro that he drop the doctor a note for the file - pointing out that Okaasan's answers about herself were a bit off the mark. But I've decided to leave it this year.
She would never submit to any medical care for dementia (or anything else!) and at the moment she is bumbling along in life ok. Another year or two it may be different. At least she HAD the check-up and is on the files now locally as an elderly woman living with her son and being cared for at home.
But it's interesting.
Okaasan of course knows that she is physically very healthy. She credits this to two meals and day, no food before 11 am, regular exercise etc as recommended by Katsuzo Nishi, a Japanese healthy living guru in the 1940s and 50s.
I reckon she does know that her memory is not good....so she writes endless little notes to herself in her room, and she constantly checks her bag and often asks us the name of things.
But of course, she isn't going to tell a strange doctor with a waiting room of people anything about this. She has no close friends. Yujiro is her one and only confidante.
We noticed recently that:
a) she really has very little awareness of weather, even if she's been out in it. Sapporo the past few days had had torrential rainfall and if we mention this she looks puzzled and says: "Was it? Not where I was. I must have been inside!" when the soaked umbrella in the hallway tells another story.
b) she often buys foods that are on her mind, but she doesn't know why, either i) something we served for dinner the night before; ii) food mentioned in a conversation or iii) food she's seen on a TV program. And there are definate Foods of the Moment. The past few weeks there has been a lot of squid, fish paste sausages, green beans, ice cream...
c) the Going Out Routines - at the moment late afternoon/early evening it's a walk to Seiyu and then coffee and McNuggets in McDonald's.