Dementia rights ! 

DEMENTIA RIGHTS

DEMENTIA IS A DISABILITY,
YET OUR NEEDS ARE HARDLY EVER MET IN THE SAME WAY AS OTHER DISABILITIES

HOW ARE OUR RIGHTS BEING MET WHEN WE ARE LITERALLY ALL BUNGED INTO THE SAME POT, THE ILLNESS IS AS INDIVIDUAL AS WE ALL ARE

HOW ARE OUR INDIVIDUAL AND BASIC HUMAN RIGHTS BEING MET HERE

WE ARE USUALLY ‘LET GO ‘ FROM WORK IN THE TIME OF PRE DIAGNOSIS WHILST WE ARE NOT IN A FULL CAPACITY OR IN A PLACE TO MAKE AN INFORMED DECISION, WITH LITTLE OR NO INFORMATION

HOW ARE OUR RIGHTS BEING MET HERE

SO LATER, WHEN MORE INFORMATION DOES COME, WHEN IT DAWNS ON US THAT ITS NOT ‘DEATH ON DIAGNOSIS’ THAT WE COULD HAVE CARRYED ON WORKING,
THAT WE WERE STILL CAPABLE OF SO MUCH MORE THAN WE WERE TOLD
WE CAN’T THEN FIGHT TO GET OUR JOB BACK EVEN IF WE WANTED TO

WHERE WERE OUR RIGHTS THEN

WE ARE PRESCRIBED WITHDRAWAL, VERY EARLY ON, TOLD WE CANT DO ANYTHING ANYMORE, TO GET OUR AFFAIRS IN ORDER.
HOW IS THIS GUARANTEEING OUR RIGHT OR RIGHTS TO PARTICIPATE AND CONTRIBUTE TO SOCIETY

HOW ARE OUR RIGHTS BEING MET HERE

SERVICES ARE VERY SKETCHY, A POSTCODE LOTTERY OF SORTS, USUALLY INAPPROPRIATE, AND MOSTLY PROVIDED BY STAFF THAT HAVE LITTLE OR NO KNOWLEDGE OF THE ILLNESS
HOW ARE OUR RIGHTS BEING LOOKED AFTER THEN, COMPARED WITH OTHER DISABILITIES

WE MUST ALSO NOT FORGET ABOUT THE RIGHTS OF PWD IN RESPECT OF THEIR CULTURE, THEIR BELIEFS AND THEIR RELIGION

ARE OUR RIGHTS BEING MET HERE

WE HAVE HEARD ABOUT THE WORLD COUNCIL FOR DEMENTIA, ANOTHER COLLECTION OF PEOPLE DOING THINGS ON OUR BEHALF, AMAZING, GREAT, WHERE IS OUR INCLUSION, WHERE ARE THE FOLK WITH DEMENTIA ON THESE BOARDS, AT THESE CONFERENCES
WHERE ARE OUR RIGHTS THERE

IT SHOULD ALWAYS BE “NOTHING ABOUT US, WITHOUT US”

PEOPLE WITH DEMENTIA SHOULD NEVER LOSE THEIR RIGHTS AT THEIR DIAGNOSIS
BUT ACTUALLY HAVE MORE ‘RIGHTS’ AS IT IS OR AT LEAST SHOULD BE,
A RECOGNISED DISABILITY

BUT IN REALITY MOST OF THESE THINGS ARE NEVER MET
ARE OUR RIGHTS BEING MET AT ALL ??

……………..

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3 thoughts on “Dementia rights ! ”

  1. Well said Chris…
    This is exactly what I mean by the Prescribed Disengagement that is dished out to us all!!!
    Give up work, get your end of life affairs in order, and get acquainted with aged care… as if that is all that is left of our lives!!!
    It is why I continue to bang on about a more ethical post diagnostic pathways of care and support; support for living as well aspkossible, support for o ur disabilities, in the same way all other people with disabilities expect, and support to remain employed if that is our wish… See you very soon too! Kate

  2. A very well written intelligent article. I work in dementia care, and as an observer I sometimes feel as if it’s easier for people in the medical profession to package and lable people all too quickly with little thought to their individual personalities and needs.. a type of one shoe fits all approach. It sometimes feels as if we are still throwing rocks at the moon regarding dementia.

  3. Good Afternoon Chris,

    Having read your blog and watched the recent “living with Demementia” documentary, we would really like to get in touch with you.

    Myself and my mum run an advocacy business which provides bespoke support and services for those with Dementia and their families. We would like you to contact us in view of an event we are hosting next month which we would like to invite you and Jane to.

    I look forward to hearing from you,

    Many Thanks

    Sarah Yardley

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