Dementia and human rights

human-rights1aSince being diagnosed with dementia and joining the global campaign by people with dementia to help improve things such as person centred care, and advocating for what are the most basic of human rights for PWD, it fascinates me we still have so far to go in achieving this.

Why are people with dementia having to fight so hard to be treated as whole and individual human beings, when virtually all other groups in our ‘civilised’ western society are accorded these rights?

What I find so curious about this, is people with dementia have always been ‘cared’ for by an industry sector whose whole focus is to care for people who are sick or infirmed! They are trained to ‘care’, and yet so many are not providing care that respects our humanity.

Dementia and aged care is definitely not ‘sexy’, and it is easier and cheaper to care for task needs rather than to care for the whole person It seems to me these days this sector is mostly trained to treat the symptoms of disease and illness, rather than the person.

Those who view involuntary restraint – physical or pharmacological – in aged care facilities or hospitals unquestionably and simplistically as a ‘best interests’ regime should be asking whether involuntary treatment in fact amounts to less favourable treatment. In terms of a person’s subjective experience, and the fundamental rights and freedoms so central to the a person’s human rights, it certainly is. This treatment of people with dementia often will have serious, debilitating and stigmatising side effects.

Something that should be understood about involuntary restraint, is that it  usually involves a strongly felt and expressed resistance to the treatment, as opposed to an inability to express or make a decision due to an impairment relating to communication or cognition. The expression usually manifests itself in ‘behaviour’, and there will often be good reason for a person’s resistance quite apart from the restriction on their autonomy.

And don’t ever forget, the restraint is ALWAYS involuntary on the part of the person being locked up or restrained.

Being restrained – locked in a ‘secure memory unit’, given drugs to make us compliant, or using physical restraints such as being strapped to the chair or bed – is done with the justification it is for our safety, and helps aged care or hospitals comply with their duty of care (avoid insurance claims!!). As I see it, restraint is used as it is the quickest, cheapest and easiest way of providing ‘care’ with limited staff and funding.

In many cases, it is worse than being locked in prison. The person with dementia has not broken the law or done anything wrong, they simply have a degenerative cognitive illness.

10 thoughts on “Dementia and human rights

  1. Pingback: NDIS update (for Australia) |

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  3. Dear Kate, I have to speak out for the dementia facility where my wife has been for many years. I do not see the restraint that you describe, nor do I see the dumbing down that you allude to. I do see a very personal approach to every resident without any agression in attitude. I do think that this situation has improved markedly since the beginning, and maybe the staff have been reading your blog?
    Where I have a problem is the community attitude to dementia, and the willingness to accept it as a disease that can be managed without drugs and restraints. Perhaps this attitude will change with your work and Alzheimers Australias work. Early diagnosis is a critical key in my mind, so that acceptance can make it easier for PWD and their carers and the general community.
    I like your comparison to say a broken leg, where you need help, but it doesnt stop you being a person.

    • Derar Jeff, I am so glad you have spoken out for them. It is so refreshing to hear these good stories, and to see that change is underway. It makes the work I am doing worth the very great effort, even though it may not be directly attributed to me! For every change, there needs to be MANY who work together, all taking small regular steps. Community attitude is changing too, and will eventually get there. Take care, and keep on being the amazing husband that you so obviously are.

  4. Kate….Why are we having to fight for anything? The whole world is one big fight right now for basic freedoms and the right to be. Until the dark ones are destroyed everything in life will continue to make no sense. There is no sense to what they are doing. It is all cruel and heartless and so far away from love its frightening. We just have to keep fighting to win out over the darkness for when we do the whole world will change, not just one small facet….Keep the faith and hope alive….VK xxo

  5. Wow Kate, I read your blog every day. (And voted) I’m not a person to pass comment as a rule. But…. Today’s blog is right up there. I feel you have your shield on and spear at the ready. It’s a poor paid industry and I’m not sure that its going to change in a hurry. Sad to say. Another reason my mum will stay home and I will struggle on. Strength and Blessings to you.

    • Thanks for following my blog, and for voting. As you rightly reminded me, it is a very underpaid sector… but this is no reason for human rights to be denied. Well done with looking after your mum, she is very lucky to have you. I’m sure you’ll be glad you struggled on, for as long as you can. With love and hope…

  6. To see someone you love, someone who has given you a huge start in life, being strapped to a chair ‘for their own good’ is one memory I will carry to my grave. Guilt is not a positive emotion but as a community we should all feel guilt at the way we treat these people not for their own good but for the efficient running of the human cattle yards we call aged care homes. I will forever feel terrible at the way we treated my father in the last year of his life.

    • Sadly, we both feel the burden of this gross infringement of Dad’s human rights… I will forever have the vision of his horror at being strapped in, and the intense sadness in his eyes…

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