Human rights in dementia care

sheep 2This image  came to me via a dear friend (#twinnie) Shibley Rahman, with different words in the speech bubbles, and I asked my very helpful BUB to change the wording to my own. I hope you like it. Of course, it might sound a little too outrageous, or outraged, or even a little ‘in your face’ (can’t think of a fancier way or word to say that), or maybe even a bit confrontational.

It is probably meant to be confrontational. Why? Quite frankly, it is still the simple basic human rights of people with dementia that is so often being denied to them, especially in residential care. It still shocks me that a caring profession has been pushed into providing care that is far from person centred, because of the economic factors of running aged care.

Sadly, in many nursing homes with residents who are decent and wonderful human beings…. mothers, fathers, grandfathers, aunts, sisters, friends… people who have contributed to society for most of their lives, they are being restrained with medication or physical restraints. Being “medicated” to make them easier (but not cheaper) to care for, or placed in beds designed so they cannot get out of them, or a ‘seat belt’ to the chair for ‘their safety’. Oh, and they are being locked in “Secure memory units”, which to me is just a fancy term for being locked in jail, or trapped in a cage.

According to my online Encarta Dictionary, medication is the “treatment of an illness using drugs“. However, the use of a significant proportion of the drugs STILL being used to medicate people with dementia is not being used to treat an illness, but to manage “behaviour(s)”, to make the resident more compliant and easier for the staff. More often than not, research says, it is not being used for illness at all, but to restrain them, and dementia is actually a contraindication to most of the psychotropic drugs being dished out to people with dementia and many elderly in residential care.

There is another form of restraint that does not appear in the literature, but that I am experiencing, and led me to add the image of sheep being caged, with its harsh wording on this blog. It is the fact that the voices of people with dementia are still either being left out, or when asked for, then not only being rejected, but ignored.

As an advocate for people with dementia and the elderly, I regularly speak at events or online about the issues facing us, and the amount of ruckus this seems to muster is unsettling.

It seems to “rock the boat” (Prof Debra Myerson, via some presentation slides by Helen Bevan @helenbevan) makes people uncomfortable, defensive and slow to accept you are not just being a destructive trouble maker. When I give negative feedback, I suspect I have trouble not sounding annoyed, and sounding like more than just “the grit in the Oyster shell” (Glenn Rees), as I take things personally, and definitely feel a responsibility to stand up for the rights of everyone with dementia.When it comes to my human rights, it is personal! But to walk that fine line of rocking the boat, and still being in the boat, is very difficult, and to be able to do that we need to “conform and rebel” at the same time.

Creating change for people with dementia, and the elderly especially those living in aged “care”, is really my goal in speaking out, and in being a “boat rocker”.

I do still say for the majority of the time, aged and dementia care is more about being Purse-centred care than Person-centred care. The money crunchers and owners of many of the aged care sites often insist on their managers running on low staff levels and using other cost cutting strategies, all of which impact the level of person-centerd care that is possible to a resident, by staff who for the most part are doing their best to provide optimum care.

Recently I was pleased to read many people’s examples of really good care that a number of twitter-friends had tweeted about, after my “purse-centred care” tweet! It is encouraging to hear of positive experiences for everyone, so let’s hope change – not continued PCC talk fests – really is in the air. For the most part, staff working in residential care facilities are doing their very best to provide good care, but constrained by funding, low staff levels and the notion that task based care is more important than person centred care.

<blockquote class=”twitter-tweet” lang=”en”>

It’s a disgrace most providers of dementia & aged care are providing Purse-centred care not Person-centred care @legalaware @Aspirantdiva

— Kate Swaffer (@KateSwaffer) June 28, 2014

26 thoughts on “Human rights in dementia care

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  5. It is not just in the health and care system that people with dementia suffer. In my experience it is in every day services provided by utility companies and local government who refuse to accept they have responsibility and duties to people with disabilities.


  6. I’d like to bring up the topic of human rights from another perspective ….. of someone’s right to live and die as they choose. If someone with dementia wants to access a peaceful death before they deteriorate too much they aren’t able to do it with the help of the medical fraternity. ie. there is no legalised voluntary euthanasia in Australia. Consequently people are forced to kill themselves, often brutally, before they would ordinarily wish to. Hanging and poisonous gas (from their car’s exhaust) is a common way for the elderly to die.

    Luckily there is a drug that has gained popularity that provides a safe, dignified death. However it’s difficult to access and people risk imprisonment if they try to buy it.

    I wish – I DEARLY wish – the dementia organisations would support what its members want. 80% of Australians support legalised voluntary euthanasia, and I’m sure at least 80% of those with dementia would support it too. Why can’t they promote the issue with parliament? After all, there would be very strict laws in place and no chance of problems.

    I’d love to read a blog post by you on the topic Kate. Have a think if you’re willing to write one.


    • I for one support the concept of legalized voluntary euthanasia. I believe that we should have a right to personal dignity and consideration of our loved ones which this entails. If and when I think that I have no positive purpose, I want to leave.


      • I’m not dis-agreeing with you George, as personally I very much agree with you, but do realise there are those who disagree vehemently too.. it is very personal for everyone.


  7. Thanks for your work. A lot of nursing homes, at least in the U.S., routinely prescribe numerous “chemical” restraints for those with dementia. The staffing levels are horrendously low in most places. It’s rather ironic, if you want quality medical care as you age in the U.S. prison is your best bet.


    • Prescribing them is tantamount to murder in many cases… it is a very hot topic here in Australia at the moment, and hopefully things will change. As you say, prison is a much betrter place to live than many aged care facilities! Or maybe a cruise ship, except a couple were sent off a ship here in Australia becasue the wife had dementia!


  8. Unfortunately the Dementia train like all ‘change’ trains is slow to move along, but move along it does despite the speed. Keep up the good fight as it encourages others to do the same. You’re getting there, it just may not feel like it. Blessings and love….. VK


  9. Hello, Kate – sometimes the way people with dementia are treated – both inside families as inside facilities – seems to be stuck in 19th century ways, or earlier. Although, I’ve learned, in some old cultures people who live with symptoms of dementia are treated as a natural part of society.


  10. Hi Kate. I don’t take offence at the reworked cartoon. My wife has been in aged care for nearly 1 year. The type of care home you describe is nothing remotely like the one in which she resides. I think that is mainly because it is not run by private owners and operators but by a not for profit church centred organisation called Baptcare. I have been very happy with the care they provide, and the extra care they took with my wife while I had to go into hospital for 11 days. Their care is definitely person centred with all of the carers and nurses bringing a kind and patient approach to their work. I visit 5 times a week for up to 2 hours each time and I have never seen any physical restraints that you mention.
    So in summary, not all care homes are the same. My advice to anyone looking for an aged care home is go for one which in run by a not for profit organisiation.
    Keep up the good work with the advocacy.


    • Thank goodness she is receiving good care, I am THRILLED. Perhaps you are right, the not for profit aged care sector is doing it better than most. And I’m glad you didn’t take offence too, although realise some may. I guess my point about being caged in, is that we cannot simply put a lock on the front door of a mental health hospital, but we do in a nursing home or memory unit within the home, without any thought to human rights…


  11. Thank you, Kate! I have just started leaving comments and feedback online, and have been surprised at how many times my comments on blogs (which have never been in the least confrontational, but I think maybe push the envelope of people’s comfort level simply because I state that I have dementia) are not approved. THANK YOU


    • THANK YOU for joining the conversation here… it is wonderful to have another person with dementia speaking up.

      It sometimes doesn’t surprise me I get negative comments (like todays blog might) as I am sometimes confrontational, but more often than not, like you, I simply offer an authentic voice, or another opinion, which people without dementia don’t seem to like hearing (reading)…

      Please don’t let it stop you xox


      • Kate —

        Another person with Dementia here. I was diagnosed with Alzheimer’s about a year and a half ago.

        In past years, I spent a good deal of personal and professional time working for the “independent living of people with severe disability”. I was also one of the original archetects of the ADA (American with Disabilities Act). Surrounding that time, I also wrote the first Federal Grant for an Independent Living Center in the U.S. (for CIL Berkeley, CA). I believe there are now over 1,200 such centers in the U.S.

        I have been very surprised at the amount of “stimulus generalization” predjudice when I mention to people the nature of my current disability. There seems to be an assumption that I don’t know what I am talking about and that dementia means lack of common sense, knowledge, and/or understanding.

        I am “staking out my claim” to live independently in my family as long as possible with my conditions. Although I have already received a few setbacks, (e.g. regarding driving), I will continue with assistance and care to be as independent as possible. I use many adaptive mechanisms and devices to help achieve independence and self-support. I am 69 years old and not ready to “retire” from being an active member of society.

        Sincerely, —- George Watters


      • Hello Geroge, thanks for joining the conversation here. And good on you for “staking out your claim”… keep it up! Reclaim your prediagnosis life, do not let others think you are no longer a whole person!


  12. Pingback: Human rights in dementia care | Never mess with a Senior!!!

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