Stand up and speak out…

Recently I posted Jennifer Bute’s story of being diagnosed with dementia. A couple of her quotes really stood out to me.

The first quote is about compensating for the symptoms of dementia:

To compensate, I became ruthlessly efficient,  writing everything down as soon as I had spoken to the patient and   following up referrals immediately. However, I knew that if I continued working  I could no longer guarantee this.’ 

This talks about compensating for the symptoms of dementia through efficiency, and must be one reason why people often doubt the diagnosis. Most [people with dementia] work very hard in the earlier stages of the disease to compensate for and cover the symptoms up, 1. because it is embarrassing and humiliating to show cognitive decline, and 2. PWD need and want to keep functioning as well as possible, for as long as possible.

I find it curious that when we start declining in other areas of our health, such as losing our sight and needing to wear reading glasses, or are diagnosed with something like diabetes or even cancer, no-one questions the diagnosis. This shows the ignorance and lack of real awareness about the impact of dementia, not only in the wider community, but even amongst health professionals and service providers. I can only hope by speaking out this will help bring about much needed change. Accusing a person of not having dementia feels like bullying, something we teach our children is wrong.

Jennifer’s second quote also rings true:

I didn’t tick certain boxes so as far as the  medical profession was concerned I couldn’t have dementia, and was sent away to  cope as best as I could.’

The MMSE is being shown to be inadequate for assessing for a diagnosis of dementia. It has also been proven it is able to be manipulated to achieve pre-selected scores, for example, in order to get a placement into aged care. Sometimes, tests like MRI’s don’t show any signs of dementia. But, most people know when things are going wrong, such as when forgetfulness is getting in the way of daily living, or an acquired dyslexia appears out of the blue, or the naming of faces or objects becomes impaired, even if they can still name the Prime Minister and know what day and year it is. The grief and loss of chronic or terminal illness, and the notion of dying earlier than expected, is profound, and so to be told you have nothing wrong with you is insulting, and more importantly, hurtful.

Stand up speak outWe need more voices of people living with the symptoms and diagnosis of dementia to speak up, to teach others what it is really like from their [our] inner experience. I have joined people like Richard Taylor, JenniferBute, NormMcNamara and Keith Oliver who are speaking up all around the world and changing perceptions and attitudes, and day by day, hopefully, this will encourage others to take the risk of joining this world-wide campaign.

Copyright © 2013 Kate Swaffer: Creating Life With Words, all rights reserved.

7 thoughts on “Stand up and speak out…

  1. So true Kate and i am going to speak out about Dementia after my Grandads diagnosis and how people underestimate other neutrological conditions/mental illnesses and chronic illnesses too.


  2. Problem is Kate that the general community don’t ever get to hear the real stories. I’ve never heard of the people you mentioned, for example.

    There must be famous people with dementia – eg. actors et al – but they don’t ever get to tell their story I don’t think.

    It needs programs like 60 Minutes, Today Tonight etc and magazines like Woman’s Day and the sunday newspapers to publish stories. But everything has to be done in a way that people will actually WANT to read/watch/listen.

    But most people won’t. There was an article about encephallitis in the sunday newspaper (I have this diagnosis) and the headline had the word “brain” in it…… I saw the headline and read it – my mum, on the other hand, didn’t notice the story. It wasn’t the type of headline that attracted her attention.


    • The people I mentioned in the blog have been talked about, or featured here a few times, as have a couple of famous people… but of course with memmory loss, you might have forgotten that. Sometimes I post blogs that I’ve written about before, for the same reason!!!

      And then I get a rude comment from someone (I always delete these!!) to say I’m being repetitive. Ah well, such is the wider not always generous audience. 😉

      I’ll have to feature a few more famous people, or write a list of them. I found a blog a while ago with many of them, but can’t find it now!!!


  3. Greetings Kate….I had no idea there was such a denial of dementia!! Why would people do this in the first place? Is this all wrapped up with insurance and their need to deny coverage? Such a disgrace, but change is upon us! So much happening now behind the scenes. You’ll see very soon. I promise…Blessings…VK


    • I think it is simply a case of ignorance, and preconceptions about how people with dementia are meant to behave, i.e. if we are not doing things like dribbling into our soup or taking off our clothes in public, then we can’t possibly have dementia??


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