This quote is very pertinent to anyone who has experienced long term chronic illness, particularly those with an illness that is not ‘easy to see’ or ‘easy to diagnose’. A broken leg or hip is obvious, but for so many of us, many of our symptoms are invisible, and the social context is completely ignored. Anyone living well with dementia is automatically assumed to either be lying, or that their doctors are wrong.
Let’s hope the more western medical doctors take notice of the DAI webinar and this quote…
Please keep the blog going and the emails. The issue always is preventing marginalization by family, friends, clinicians, politicians, etc., of persons with dementia, including but not limited to FTD and Alzheimer’s.
Steve Perlis
Thanks Steve… I’ll do my best
My guess is that “diagnosis” is the most difficult part of a doctor’s work. My guess is that some misdiagnosis is based on poor training, some based on not having or taking enough time to look closely, some based on prejudice, and some based on inexperience.
However, when you think of all the variables that present themselves in how many ways, for how many different people, at how many different stages of an illness, in how many combinations and permutations, with how many different ways the symptoms are explained, and how many different ways of measuring the results … it is amazing that most doctors do as well as they do!
Not excusing them but trying to understand. The solution? The patient and their family need to take a more active, involved role in the diagnosis; the doctor needs to take more time and listen more carefully and spend more time in researching the possible diagnoses available to him/her.
What I loved about this quote, was it came from a medical doctor. There are so few who admit to what they don’t know, or were not taught in the context of the whole person. At least my own neurologist, for all is self proclaimed genius, admits easily there is so much he does not know about the brain. I admire that a lot in him.
Here’s another one by a young woman doctor in the US. The parallels between racism and dementia-ism. ageism just leapt out at me: https://www.statnews.com/2017/05/17/bias-undertreatment-pain/
Thanks for reminding me about that article Susan, I think I posted it on social media platforms recently too. Lots of truth in both xxx ps I have been writing a blog for many weeks now about some of the parallels between racism and dementia
I believe that many people fear developing dementia even more than they fear cancer. I think this is where the denial comes into play, and doctors only want to diagnose illnesses that they can treat. They are at a loss when it comes to basically untreatable illnesses like dementia.
Agree Paulan, the research now supports that as well. Dementia was declared the most feared disease for people over 65 in Australia a few years ago, taking over from cancer, as it was in the UK a while ago as well, and I think there it was most feared for anyone over 50. One worry I have had about the DFC’s and other awareness campaigns, as well as the fundraising campaigns, is they use the ‘discourse of suffering and tragedy’ to help them, especially in fundraising, but this has possibly been a huge part of the increased the stigma and fear of the disease.
People fear it because of the ongoing, pervasive and insidious negative narrative which lies at the root of everything else (i.e. poor care, drugging with antipsychotics, etc.). We need to change the very foundation of the narrative. That’s what I’m working so hard to do. #FightTheGoodFight
100% with you on everything you have said AS xxx
FYI Kate, I think this is the origin of this meme: http://www.sfgate.com/opinion/openforum/article/Funding-healthy-society-helps-cure-health-care-3177542.php
I had seen it before and was curious as to where it came from so I did a search.
Thanks Susan, I have also emailed Laura, as wanted to discuss it further with her.
just a reminder also about the blog post about the “upside of dementia,” which you said you want to send to me to be included in the post i’m writing 🙂
Oops… I have zero recollection of that. Not even sure if I have written it, published or even started it?????
When do you need it by? xx
LOL! We had agreed a deadline of June 16, which was yesterday 😛
Thanks for making me feel right at home in forgetting just about everything all the time 🙂
Shall I send you an email with the details? X
yes please!
Just sent 🙂