Dementia and Human Rights

Ten years ago this week, I was diagnosed with a rare form of younger onset dementia, aged 49. An early 50th birthday present from the Universe!

I don’t remember saying thank you, but I should have.

Ultimately, it has been the third greatest gift of my life, and created a deeper purpose than I’d ever had before. But the road has been very rocky, definitely ‘the’ roller coaster ride of my life, and one that has highlighted so many breaches of the most basic of my human rights.

It has also highlighted quite profoundly, and with incredibly thunderous clarity, exactly who were my true friends.

Dementia has also brought me a very large group of new friends, who I love as much as my pre dementia friends, and who are people I often refer to as my ‘Dementia family’.

I’ve also fully experienced what Dr Martin Luther King expressed as the sense of ‘otherness’, to the point on many occasions where I’ve felt that others have treated me as a ‘non-human being’.

Thankfully I’m resilient and optimistic by nature, or the reactions to dementia may not have become a gift! As I’m currently in Geneva this week, covering as many dementia related meetings and sessions as humanly possible, with a bit if help from my very patient Back Up Brain, I thought I would list some of the breaches of my human rights, since diagnosis.

Human Right breach 1:

My doctor told me there was nothing he could do, other than monitor the progression, but he said it was likely I’d progress quickly and be dead by now. He also stopped looking at me or talking to me, until I made it very clear ‘I was still all there!!!’

Human Right breach 2:

The whole of the rest of the health care sector, especially service providers and advocacy organisations told me to go home, get my end of life affairs in order, and start going to dementia day care once a month to get used to it.

I trademarked this as Prescribed Disengagement®️ and 10 years later, it is still happening to most people today.

Human Rights breach 3:

When I failed my driving test, resulting in losing my driver’s license, I ‘lost’ my job! No one, not even the dementia experts td me I had a human right to be supported to stay at work, with Reasonable Adjustments, which should have been automatically provided by my employer.

Human Right breach 4:

The health care sector does not offer not provide funding for Rehabilitation including speech pathology at the time of diagnosis.

Human Rights breach 5:

The health care and service provider sectors do not provide any form of Palliative care and counselling, in line with other terminal illnesses, at the time of diagnosis.

Human Rights breach 6:

I was not provided with Disability Assessment or proactive disability support at any time by the health care or service provider sector, nor any proactive disability support to maintain my independence and live my life as well as possible, for as long as possible.

My university however, immediately set me up with this approach, teaching me to accept and see the symptoms of dementia as acquired disabilities, allowing me to continue living a positive meaningful life.

Signing off with some good news, which may alleviate at least one of these human rights breaches:

So, as I attend the Seventy First World health Assembly this week, it has been one of the greatest joys of my last 10 years, to have been able to ensure Dementia Alliance International is a founding member of a new Association, The Global rehabilitation Alliance. I now have a unique opportunity to ensure globally, that rehabilitation specialists learn that dementia and rehabilitation do go in the same sentence, and all people with dementia have a human right to be provided affordable, accessible rehabilitation.

38 thoughts on “Dementia and Human Rights

  1. I am appalled that you were let down so badly by health care experts at diagnosis. I am however inspired by your positivity and determination to change things for others. My Dad had Vascular Dementia post Stroke aged 85 and it was a rocky road. We received some amazing support and conversely some that was lacking in kindness and compassion.


    • Hi Sue, unfortunately my story is still SO common, 10 years later, which is the real tragedy. For all the rhetoric, stuff all has changed!!! Although my husband would, yes, but it’s slowly changing due to the collective advocacy of so many people now. Glad you received some positive support for your dad. I eventually was linked to an incredible social worker, and with her, and the University Disability Support unit, I was able to become positive, proactive and ultimately very productive. X


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  4. Hello Kate

    Just a note to let you know I’m thinking of you in your usual significant confrontation with anything that diminishes who people living with dementia are. I’ve been tracking some trends in my work and despite best efforts of some people, we are still missing the real connection to actual living people. Somehow we need to break the hold of traditional ‘boxes’ of practice that keeps steering people into an almost self-congratulatory smugness of doing what’s best for others – without even checking in with the ones who know most what it is like and what is needed. Keep up the inspirational work. I look forward to a coffee when you get back.


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  6. Thank you Kate. Thank you for your continued fight to make things better for people like us; thank you for your support and encouragement….in fact thank you for being you. Take care. X


  7. Kate, this is another amazing and inspiring post-you are amazing and inspiring and i love following your blog and always look forward to reading past posts and new posts-and well done on managing to live 10 years with dementia-an amazing accomplishment-and you have proved the doctors wrong! You continue to amaze me, and thank you soooooooooo much for all the amazing work you do to make the world a better place for those living with dementia, and i am not sure where i would be with my Grandads dementia if a didn’t follow your blog so thank you again. Congratulations Kate, and wishing you all the best for the next 10 years+! I am sooooo proud of you Kate and i am sure your family are too-so glad you have gained many new friends and many new blog followers who all seem lovely, and i love the saying ‘dementia family’. Although i don’t have dementia, i am probably considered part of the ‘dementia family’. You certainly have gained lots more friends, and i admire your determination and perseverance. You are a wonderful example of someone living live to the fullest despite the challanges in your life. You are a star!


  8. Kate I again applaud you and salute you for such a phenomenal win, but also for just being such an exceptional human being.
    I’m still at a loss, as is often the case, regarding why anyone must fight so hard and long for acknowledgement in an area that is obviously an integral human right.
    It again just flagrantly demonstrates how unfair and discriminating is the health sector, still, in regards to people living with dementia.
    This in my mind is further neglect of people living with dementia, with no logical reason but institutionalised bias.
    Rehabilitation applies to any person and no one has the right to decree otherwise.
    So so proud of you my friend. My hero and inspiration.


    • Thanks girlfriend… you’d have been horrified to have been sitting in a room with me Wednesday night, listening to the total lies from someone in our government about how good the Australian health system is doing in terms of dementia. Including talking about BPSD as if it was a good thing!!! Apparently my face said it all 🤬🤬🤬🤬

      Liked by 1 person

      • Omggggg. I don’t know if I would have been able to hold my tongue babe!!! I would have loved to see your face…..well…I can definitely imagine the horror and the death stare!!!!!
        I can’t believe they are getting away with this rubbish still Kate!!! Nor that they actually seem to believe their own lies. Surely this can’t be put down to ignorance any more. All I can suggest is we put it down to moronic “stupidity”. So so frustrating………
        These people in positions where they should be using their power for good, are the catalysts to creating the continued stigma attached to dementia, & the fault lays with them for generating this attitude by still using terminology like BPSD, that instills ongoing unfair & negative attitudes & are a representation only of their fears. Hence may I reinforce that these discriminatory attitudes are frequently the impetus in creating inaccurate perceptions about those that live with dementia, instilling negative, pessimistic mindsets, that are then, prejudicially passed on to people who live with dementia.
        Not cool!!!!!
        Together we will be heard eventually Kate!!!!

        Liked by 1 person

      • I am sure it was a dreadful and bastardized session and I would have been more than annoyed that’s for sure.
        Definitely be vocal when you get home Kate and let them know this ignorant attitude must cease. Give me a call babe and we can plan our assault!!!!!!!


  9. Wow Kate, a bumpy road indeed. Thank you for your courage and tenacity and for the remarkable ability to see your diagnosis as an opportunity. You are an inspiration.


  10. P.S. Kate, I’ve just noticed there are no twitter and FB sharing options included under you share button – I wanted to share this on twitter. It’s just a matter of changing your share options in the backend.


  11. In crisis lies opportunity, in challenge hides change, in despair lies hope, in loss lies gain, and yes, diamonds may be found in the dirt.

    Congratulations on turning a negative into a positive Kate, and the rest of the world should be saying thank you too.


  12. Congratulations Kate on another inspiring blog, wishing wind in your sails as you tread new ground to instigatie a global push to move closer to accessible and affordable rehabilitation for those we love who live with dementia, thanks for your resilience and persistence, the world is a better place because you are in it, with love and gratitude Ness


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