Human Rights, dementia and the elderly

ALL Australians are meant to be protected by The Universal Declaration of Human Rights, a wonderful document one that took many years to design, and to get countries to agree to. However, it seems not to apply to the health and aged care system in Australia. When we look at this declaration, we fall short for people who are chronically sick, aged and/or who suffer from dementia. If the infirmed aged residents or those suffering from dementia were a psychiatric patient, an illegal immigrant, an asylum seeker or a prisoner, they would have equal rights to the rest of the population, yet currently they do not. Physical restraints were used on a friend as an inpatient in one of Adelaide’s leading major hospitals late last year. At the time, I was told by a nurse the hospital had the legal right to do this, although I had thought this form of restraining was not allowed to be used in hospitals or aged care facilities in Australia in the 21st century. I was wrong; it is still being used, along with the overuse of pharmacological restraint. If someone in a nursing home shows even the slightest amount of agitation or anger, then medical intervention is quickly called upon, and in fact attended to in a much quicker manner than other required medical treatment. Why it is there is still physical or pharmacological restraint in use, in hospitals and nursing homes in Australia is completely questionable. It is a scandal our care model is not working. Or is it that nursing homes refuse to have enough staff on each shift to deliver more than task based care, and they merely manipulate their staffing levels to accommodate accreditation standards, to save money? I am not sure, but I continue to feel moderately ashamed to have ever been a nurse. I even started a TED conversation about this, and had just a few responses, about half of which agreed with the use of physical restraints. I scratch my head in wonder… what is wrong with us? Where has our humanity gone? I will continue to question, out loud, what is happening. Solutions are hard to find, and even those people who are making waves find themselves being pushed to the background. Some research in Australia has shown clearly that people with dementia in Queensland are receiving between 2 – 28 minutes of face to face contact with staff… per day. This researcher is not yet heralded as having something valuable to report.

Last Friday I attended a Knowledge Transfer Workshop: Do you want to update your knowledge in key areas of dementia care run the SA/NT Dementia Training Study Centre . It was an exciting and informative day yet I came away with the same compelling question that has surfaced following every other positive conference, forum, workshop or seminar about dementia care I have attended the last couple of years: Why is this knowledge not being transferred into the work place, especially in aged care? Professor Richard Fleming is a pioneer and leader in his field, and ran a workshop: How to improve the physical environment for people with dementia. He designed an evidence based Environment Audit Tool, which is free and an iPhone App is also available to go with this very soon. It was exciting and refreshing, and the facilities that changed their sites to meet these standards showed their residents have much lower levels of anxiety, and therefore reduced behaviour problems. And yet, so few facilities are complying or interested. Dr Faizel Ibrahim is currently a Consultant in Geriatric medicine at the Queen Elizabeth Hospital in Adelaide and gave a presentation: Dignity in dementia care from the acute care sector. He is passionate about improving dementia care, and just like Professor Fleming, is HORRIFIED we are still using shackles and other restraints including drugs in Australian hospitals and aged care. He is determined to make changes to hospitals and the aged care sector. Both of these dementia and aged care specialists reported Australia is lagging behind the rest of the world in this area, and countries like Norway and the UK have outlawed any type of restraints as being against our individual human rights. Hooray!

It is time to step up to the plate, speak up, speak out, and work together with like-minded people to bring about reform. It is clear we need radical change in the culture of aging so that when our grandparents, parents (and eventually ourselves) need to receive in home care, or go into aged care, we will thrive rather than decline. We have a broken system, not broken people. The system needs to be fixed so that compassionate care workers can actually provide authentic person centred care, not just go to workshops and talk about it. The people who work in aged care are some of the most caring people in the world. We don’t need new people, we need to radically transform aged care into places where people want to live, and where people truly love to work. Dr Ibrahim has pledged to give 80 free talks per year to anyone who will listen on dignity in dementia, and how to reform dementia and aged care. I’m joining him, in my own way, and hope together we can create a tsunami sized wave of people speaking out. With the researchers and doctors, at long last listening to and joining the voices of people like Richard Taylor, Carol Cronk, Christine Bryden, Helga Rohra and many other people with dementia, many of us now with a voice on the I Can I Will site, like-minded people on the dementia train, I feel very confident we can and will make change.

5 thoughts on “Human Rights, dementia and the elderly

  1. Pingback: Ita Buttrose on dementia and human rights | Creating life with words: Inspiration, love and truth

  2. I’m someone with a diagnosis of a form of dementia, and I am at risk of a multitude of other illnesses which I hate the idea of – a cancer recurrence, stroke, dementia again ….

    I do NOT want to live with dementia in my old age. So this will mean that I will have to take the necessary precautions and die earlier so that I can use my faculties and die at a time and a place that I choose.

    I have an advanced care directive so everyone knows how I feel. Ijust hope that I am never in a position to not be able to help myself.

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  3. I whole heartedly agree with you on your overarching point that Australia does not treat people with dementia in a way that protects their human rights.

    However, I respectfully disagree with your statement that illegal immigrants, asylum seekers, psychiatric patients and prisoners have equal rights as the rest of the population. The United Nations frequently chastises Australia for human rights abuses against refugees, asylum seekers and illegal immigrants and many psychiatric patients are subject to physical restraints and unnecessary, unwanted over-medicating. This is especially true in secure criminal psychiatric hospitals, where people who are effectively prisoners as well as patients have almost no say over their treatment.

    I absolutely hear what you say about the manifestly inadequate and abusive way in which dementia sufferers are treated, which may well be worse than the treatment other people are subjected to. However, this does not serve to nullify the experiences of other marginalised groups.

    Love always,
    Eliza xxxx

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    • Dear Eliza, It is such a pleasant change to be so respectfully disagreed with! Totally LOVE you for it, and also know, this is always your way so thanks for being true to you. I’m happy to be corrected regarding the human rights (or lack thereof) of other marginalised groups, although was told by nurses at the dementia workshops that patients in psychiatric hospitals or units are no longer restrained. I was not sure whether to believe them or not, as expect their definition of being ‘restrained’ may differ from that of the patient. Most definitely the overuse of medication is rife in many groups, and this is an abhorrent practise. Thanks for joining the tsunami. Love you too, Kate xxx

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