Currently I am working on a piece titled “What is dementia?” which I have decided to turn into a short series of blogs. So often, I am asked questions that I had imagined health practitioners would (and should) actually know the answers to if they are working in the field of dementia, but even some of the educated ones are operating under a lot of myths and misperceptions. Only last week, yet another registered nurse who has been working in a dementia specific unit for more than 20 year, asked me is Alzheimer’s disease dementia.
What this means, I think, is although I realise there is a lot of upskilling of medical and nursing staff going on in many countries, it cannot come quickly enough! Imagine if I worked in ICU, and didn’t know how to insert a cannula or resuscitate someone, a very simple procedure in an area like that. We would all, quite rightly, be outraged…
So, today I am adding an image produced by my BUB (who did not wish to take the credit for – sorry darling!!!) for the book I co authored with Lee-Fay Low, released only this week by New Holland Publishers Diagnosed with Alzheimer’s or another dementia (2016, p 17), as it gives a simple picture of how the word dementia is not a disease itself, but an umbrella term for a large number of different neurological disorders or syndromes. Lee-Fay and I decided what text to use in the boxes, but he did the design and formatting for us.
Somewhere this week, I read that believing dementia is simple to understand, simple to diagnosis or to treat, is done at your peril, and I am sure this is true!
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Thanks Kate & Pete. Fab graphic.
Now to “unpack” it….(still thinking about co-designing a workshop)
Good luck! x
Thank you for this piece and for so many others. I love the way you are writing so strongly and honestly on this important topic.
Thanks Deborah… perhaps one of these days, we will get to do that interview too! 🙂
Very good: but it’s Creutzfeldt–Jakob disease
Pete the Pedant
Oh dear… Lee-Fay will be devastated to read this! It may be one of the few edits that didn’t make it to the final cut, which now I am over my second book, is the norm! There are quite a few ‘final edits’ that didn’t make it in this book, including the better quality images. As authors, of course, it reflects on us, not the publisher…
Great image diagram 🙂 But I’m sure I read somewhere that dementia is progressive and fatal. Is this right? What if you have a disease that progresses, but is treated and stabilised. Is this dementia.
I researched this because I wanted to work out once and for all if encephalitis is a form of dementia. I have encephalitis that was progressing – at the time of treatment my memory was so bad that I was unable to count backwards from 10. I could talk ….. just couldn’t count backwards. But with treatment I improved a lot, but am still left with a lot of cognitive problems, including significant memory problems. Plus many other symptoms still, like mild anxiety, constant hunger and thirst, 24/7 pain (3 different types), bad fatigue, occasional vision problems ….. I researched it a while ago, and I decided that I was fitting in the dementia basket (just can’t remember what my reasoning was, based on what I read. But I didn’t and don’t consider it important enough to print and keep)
If it’s got to be fatal / terminal, you might like to include that in your diagrams (too late for the book, but could you change it for your online diagrams?) That way it will be correct for as long as you keep them onlilne 🙂
As far as I know yes, most types of dementia rare considered terminal. I think due to many o fun being diagnosed so much earlier in the disease process, the ‘prognosis’ we will receive in the future will be vastly different to what is currently given. x
Hi Kate don’t forget Postieril. cortical Atrohy Which tends to affected people in their 50 s and is dam hard to diagnose if only Gps listen to patients we know our. bodies .
Xx Anne
This diagram was simply a ‘brief’ graphic, and needed to be so, therefore not able to include every single dementia syndrome… but hopefully in this series I can fill in some gaps. Hugs to you xx
How totally ridiculous!!! Do I look like I have depression? Did you know I have had Breast cancer twice? You are dead right, people have no idea. I have learned so much just from doing the foundation units of my degree in dementia care, and before that in a very solid Certificate III in aged care. Again, it depends on who is taking that course too.
I have been trying to get interest or ascertain if there is anyone within my mother’s over 50’s retirement village, in having a social get together for older folk that are having memory problems. Considering the statistics, I figure in a village of nearly 400 people there must be a few who have dementia and a few who may have early onset or early stages of dementia. The retirement villages are more interested in those who are cognisant enough to read newsletters and who can get to the community hall. In a way it is like the broader community, nobody looks further than the surface. But maybe if there was preventative measures and education, there would be more inclusion for those that do not fit the independent models of living.
I have put my hand up to start an initiative to address it. Not sure what we will do yet, but i am sure there is a need.
regards
Adrienne
Keep up the ‘rage’ Adrienne… great to have someone beside me! xx
It is shocking, Kate, you’re right. I was on a panel at a health services group – some medical, care home operators, nurses, etc. – meeting and at the break an audience member approached me, looked me up and down and said I didn’t have Alzheimer’s. How did he arrive at that? He said, look at how well you’re dressed. What he didn’t know, I told him, was my wife helped me coordinate my outfit. That was a few years ago but I can’t get it out of my mind. Take care Kate, Jim, Canada
Thanks for joining us here Jim… the ‘but you don’t look like you have dementia’, said after meeting us for 2 minutes, still astounds me as well! It is as if we must be meant to have horns… oops, some might actually say I do haha. You take care too Jim, and hopefully next time I’m in Canada, we will spend a bit more time chatting. xx