Here it is… MY expert opinion.

expert 1It seems the ‘experts’, namely those people who work in a field, but may not have any personal experience in that field, are always considered and called the experts, and the patients or consumers who are living with the experience or disease are often treated like morons or idiots, as if they have no expert insight or understanding of that topic or sector.

This of course, has happened in the dementia sector, even though people without dementia have no idea what  the lived experience is actually like. I am regularly asked to contribute to state, national and international work on dementia, and most of the time, my previous knowledge and current qualifications are ignored, and I am written up in the final report or communique as a patient, person with dementia, or consumer.

This is totally unreasonable, and offensive, and it is time all people with dementia started to request their qualifications, pre dementia experience, knowledge and careers are recognised, in the same way as everyone else if they are providing expert advice to anyone else. In fact, we should start charging a fee for it! We are no longer willing to be someone’s ‘tick box’ so they can say they have included us, and instead want an equal place at the table. Mini rant over… 🙂

30 thoughts on “Here it is… MY expert opinion.

  1. Dear Kate – You speak for all of us – whether we be Younger, Over 65, Indigenous, Multi-cultural, Multi-Lingual, Trans-Gender, Remote, Mad or Whatever – and whether we live Alone, in a Commune, are Homeless, or in Prison, live with our Lover, our Partner, or our next-Door neighbour. Living with dementia we speak the same language and I do understand exactly what you’re saying. So continue to be our Voice and tell it how it is.

  2. Kate, another anecdotal comment. V’s service provider had asked us to do a “memory book”. Well, given V’s identity it makes more sense to do a multi media history of her career…and wind in other significant bits of her life, as she sees it. You should’ve seen the raised eyebrows when we told them this.

    That makes me think of who the intended users of a “memory” anything are assumed to be. It’s too often lip service to person centred care, in a format that care workers are comfortable with. Not about the person’s ongoing identity.

    V’s dad refused any photo reminders of his life when he moved into residential care. For him, that just hurt.
    Both he and my mother preferred to communicate directly, in the “here and now”.

    PWD need to wrtite their own bios for any presentation (which should be paid, as for any other speaker, if that applies in the context) and not accept to be introduced as a person with dementia first, and an academic (for example) second!

    • Like her father, I dislike photo memory books, as when you can’t remember the people in them, or the occasions, it simply heightens our distress!!! It is, I suspect, more for those ‘caring’ for us, than us, yet another tick box… keep at it with your individualised record for V!! xox

  3. Boy does this resonate with me as an expert on my mom, as well as her behaviors and her needs at a time when she is no longer able to articulate what they are. You can’t imagine the bullshit so-called experts (including doctors, nurses, social workers) have tried to feed me.

    I blogged a little about it here: http://myalzheimersstory.com/2015/01/04/the-right-thing-to-do-when-somethings-wrong/ I find it so frustrating. I imagine you must find it doubly so 😦

  4. A most excellent mini-rant–from a geri-psychiatrist, former AD researcher, current carer of 2 parents living quite well w/ dementia. Thanks for your work Kate!

  5. You just explained the insane, upside down world we have suffered in forever. Difficult at best, horrendous most of the time. The injustices are staggering and constantly building. Nothing about the medical world and their best Buddies Big Pharma,have ever been fair, especially since they have spent decades slowly killing us off, not healing us. Dementia I am sure is just the same. The patient is ignorant, the Doctor knows all and what he knows is gospel…How insane to think we have played into this scenario for so long without question! Bought it all hook, line and sinker! Well look out Doc’s, we are not buying your agenda any longer. Patients of all illness should be consulted always, after all, they are the ones with the true knowledge, not some text book mumbo jumbo…I have been watching carefully Kate and the reign of the almighty doctor we’ve always known is quickly ending. The people have caught on and big pharma is taking a nose dive because people have turned against their poison…It will all come to an end my friend, I just pray I am here to witness it after so many years of hard work. Hang in their and keep ranting anytime! That is healthy! Much love…VK

    • Much love to you too dear VK… and thanks for your support and friendship. We, the people, are speaking out and up for change, and against big Pharma, and the more of us who do, the better we will all be (IMHO!!)… xox

  6. Yes, it sounds like you’re being included “just to shut everyone up” so that they can’t be accused of not including those with dementia, when they might not have any intention of really listening to what you have to say!!

  7. Dear Kate,

    This is an issue for (almost) every patient in the world. Our perspective never matters, unless we have a medical degree. And even in those circumstances, things are tricky. This is a sad assumption of Western modern medicine. For people living with dementia there is indeed the stigma associated to the illness that makes things even more difficult – if not tragic. Or altogether impossible, if you’re unlucky enough to live in the wrong country of the planet.
    And yet, I am hopeful. Things are changing, slowly but they are, and I can tell the signs are all there to grasp. Your speech at the WHO last week is a clear proof of such change. Next months’ ADI conference, with a commendable line-up of keynote speakers living with dementia, is another testimony of such paradigm shift in the making.
    But of course, change needs small and big heroes who fight for all of us, and pave the way to a better world. And although I can hardly imagine what it must be like for you to feel ignored, not taken seriously, or even insulted by other “experts” (and I could not be more sympathetic and supportive…), I encourage you, Kate, not to give in to their negativity.
    Fear of change is one of the worst enemies of our species. Ignorance is its ugly twin sister.
    Thank you for always being such an inspiration.
    xoxo

    eloisa

    • Thanks my lovely friend… who I will be meeting soon in Italy!!! and I love these lines – “Fear of change is one of the worst enemies of our species. Ignorance is its ugly twin sister.” xox

  8. Absolute agreement, it is more than a little frustrating and unbelievably patronising and condescending. I would add that this happens in all areas where patients are involved in health care. It seems to me that as soon as the word ‘patient’ is used, the person is metaphorically seen in night attire and submissive. Any lifetime experience of disease or qualifications from employment become invisible. It is worthy of note that in major discussions or consultations it is generally the spokesperson of a particular charity or ‘patient association’ who is brought in and often they have little or no direct experience of the condition. However, taking a longer view, more people are speaking up and slowly but surely attitudes will change – you’ll make them!

  9. kate, I really enjoy reading your blogs. I think your keynote at the ADI conference was unequivocally ‘out of the park’. Your thoughts and ideas are definitely worth listening to. I am sorry you are upset, not absolutely clear, what has upset you, but are you saying ‘ someone has not valued what I say’ ?

    • Thanks for your support… a general blog, about an almost daily challenge for most people with dementia. So no, I had not been upset personally yesterday, but a friend had been, and that blog was partly written many months ago, as my draft folder of over 70 blogs tells me. Not being respected, believed nor acknowledged as having any expert insight into one’s own health is a common occurrence.

  10. It does seem as if it’s only those diagnosed with dementia who are not credited with their acquired credentials and qualifications (i.e. their life skills and achievements PRIOR to diagnosis). It’s as if these skills and qualifications are erased from their life going forward which is just obscene. This does not happen with people who are diagnosed with cancer, heart conditions, diabetes etc so why is it done with dementia diagnosis? As you said Kate, “WTF ?”.

    • haha, I’m very glad my WTF has been accepted without angst!!! as a blogger, one never knows when someone is going to rage against you, and I thought that might bring on some rage!!! xox

  11. I couldn’t agree more Kate! As a carer of those in the community with dementia ( a recent career change) and also having cared for a long time for my beautiful Mum up until her death at home, I have encountered so much of this misplaced focus on “experts in the field”, not to mention the plethora of pharmaceuticals to treat dementia prescribed by “experts”.
    The “experts” are actually those who live daily with the disease and can provide the most accurate insight into what this means.

  12. As always ‘spot on!’ And you should not have to excused for having a ‘Mini rant!!’ And it is insulting when the so-called experts use your expertise and take credit for it and worse still don’t acknowledge the source or offer payment! As you continue to say, if you had a diagnosis other than dementia the level of support for you and acknowledgement of your expertise would be completely different. As you so succinctly put it – WTF !!!!

  13. Indeedy! It gets more than sickening to listen to what people think ABOUT people with dementia and, from my perspective as a care partner/supporter, to be asked ABOUT V by friends who could make the effort to ask HER. I’d hate to be “studied” like a near extinct creature!!!
    Then there’s that patronizing thing of “what do you like doing?” when all she wants is to be living her real life and for people to enable that when she can’t do it alone. Bugger the “activities” offered to people who want a hell of a lot more than to fill in time…
    Do the “experts” assume that people’s knowledge, skills and experience just somehow disappear with a diagnosis?

    • Commenting on your last question Lynda… it would seem so! I have said many times people treat me as if I am no longer human, and cannot think or function AT ALL, and this is from the time of diagnosis!!! WTF…

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