Dementia in the acute setting

shackled patientSadly, I have yet another horror story of our acute sector in Australia, and their mistreatment of people with dementia. Obviously I had hoped the experiences I wrote of three years ago had not continued, and that care for this very marginalised group might have improved.

But alas, it seems not. When I wrote about this appalling treatment three years ago, I did not name and shame. I am not being that “restrained” this time…

A friend’s father who had Alzheimer’s Disease died in September as an inpatient of one of our main public hospitals, the Royal Adelaide Hospital, and sadly spent the last two weeks of his life starving himself to death, simply because the staff refused to allow him to go home to die, and had talked his family into leaving him into hospital, using the “but it is in the best interests of your father/husband” standard cop-out to lousy care.

He’d had another fall at home, but was not badly injured.However not long after admission he tried to get out of bed to go home, as he did not wish to remain in hospital. He had insight into what had happened, and into what was happening to him.

The label of “wanderer”, and then “agitated” and “aggressive” suddenly appeared, and without advising his family, or requesting permission, he was chemically and physically restrained. When they came to see him and discovered this, they were reassured the hospital had every right to use these restraints, and were also told it was “in their and his best interests”. This of course, is bollocks.

After two days of being shackled to the bed, and then chemically restrained as well, he decided he would not eat or drink anything more, nor allow any medication to be administered, and asked his wife and daughter to enforce this. They then sat with him most days and nights, watching him starve himself to death, a process tha took almost two weeks.

This is a gross abuse of the medical and nursing community’s power, and of a persons most basic of human rights, and someone needs to make it stop. I was so angry about it yesterday, I was unable to write a blog without the possibility of risking a law suit.

40 thoughts on “Dementia in the acute setting

  1. Pingback: Dementia: the one contraindication to prescribing antipsychotics | Creating life with words: Inspiration, love and truth

  2. This made me so sad when I read it, just an awful story. My own fear of a scenario like this is just one of the reasons I chose to ensure my beautiful Mum stayed with me at home until the very end.
    Its a disgrace that in a country supposedly as “advanced” in health care as Australia , any person could have such a cruel and undignified ending to their life .

    • Oh yes, ugly it is and was! I was at a Dignity in Care Action group meeting, and a manager and clinician from the same hospital as this horrific practgice, said she sees it all the time, and is ashamed of her colleagues… we have such a long way to go for dignified and respectful care of people with dementia…

  3. I am so appalled and disgusted that professionals in this day and age continue to treat human beings in such an abusive manner Kate. No wonder you were so distraught. i think anyone with a soul and heart would be devastated to read this.

    I have had many similar circumstances come to my notice over my 30 years in the industry, and have fought tooth and nail countless times for a persons rights, even to the stage of reporting the persons/hospitals that have abused older people with dementia. Or even just our older population. I have even had people refused admission due to being “too old”. Disgusting isnt it????

    I would like to share a true story with you.

    The worst by far though, was a very special lady i was caring for. She is, (now), 75, has advanced AD and is a vibrant little pocket rocket, 4 foot 10 and an absolutely delightful woman.

    She had avascular necrosis of the hip, so her hips blood supply was reduced to the stage where she was in agonizing pain constantly due to her hip dying. For months I advocated, fought, cried with the family, cried with her, got on my soap box, threatened hospitals and surgeons, for the rights of this lady to live a life free of pain. It was attainable so there is no reason why it could not be resolved.

    I was faced with doctors refusing to investigate a solution other than heavy sedation and pain relief, hospitals drugging and shackling her, (This was reported), hospital staff then refusing to even admit her post the shackling incident, after recurrent falls related to her dreadful pain. Their excuse was they were unable to “care for her due to her behavior!!!!” according to them, and then consequent refusal of a hip replacement by the surgeons.

    This gross lack of duty to care, the total disregard to the needs of a woman who was still relatively young, and the fact that they believed it was acceptable and appropriate for them to make a decision that sentenced her to excruciating pain for the rest of her life, they felt was justified.

    She could not walk within 4-5 months and her pain was considerable and constant. This is all due to the medical staff and surgeons refusal to operate.

    However at the 6 month mark, (yes waaaaaayyyy, but way too long for a result), I finally managed to have this lady operated on. In the end, after my continued contact, and numerous meetings with these dreadfully harsh individuals, I didn’t want her being cared for by these soulless people, except for the surgeon, as we still needed him!
    When I proposed what I wanted it was finally agreed upon, even though the charge nursing staff and surgeon made it clear that this lady would never walk again. I did respond that if she had had the hip replacement 6 months previously when we requested it, then maybe this level of neglect on their part and the time taken for them to agree to operate could have avoided all the pain this lady endured, and she would have walked post op, given she would not have been so debilitated due to their neglectful attitude.

    I developed an action plan in which I stayed with her pre admission and until she was anesthetized, and then transferred this lady home to the site i was running at the time immediately post op. We employed extra staff to ‘special’ her for 3 weeks during her recovery.

    There were no complications, no distress, no accusations of behaviour, and finally she was free of pain.

    We called her our little miracle. To our absolute delight and excitement, and tears of joy, we found her one day, 9 months later, trotting down the corridor. She has not stopped walking since.

    xxxxxxxxx

  4. I was so angry and saddened to read this. How dare they treat a person like this. This is against his human rights. I thought they had stopped using the chemical cosh except in very difficult circumstances, wanting to go home is not one of these.

    • Unfortunaltey, chemical restraint and physical restraint is still rampant in this country… poharmaceutical companies, and the doctors prescribing them have a lot to answer for, even though now “best practice” is that this is not appropriate, the sector still finds it easier than providing better care…

  5. I’m speechless …… this is terrible and this is exactly what I fear about growing older. I can see why you were so emotional. {big hug}

  6. Reblogged this on Wolsten and commented:
    Kate Swaffer shines a light on despicable treatment provided to a man with Alzheimer’s disease at the Royal Adelaide Hospital. One can only hope that this practice is not the norm.

  7. Hi Kate, I came across your blog doing the UTAS MOOC on Understanding Dementia. It is really difficult to see how a “caring” profession could provide this level of inhumane treatment in this day and age, particularly given what we now know about the condition. Makes uncomfortable/distressing reading but bravo for shining a light on this despicable practice. Steve

    • Thanks for joining the conversation here Steve, and hope you enjoyed the MOOC? It is as you say, despicable, but it is also not my first personal experience of someone close to me, in this case a girlfriends father… it seems if you have dementia, our health sector still does not know how to treat you with dignity or respect, totally shameful. No hospital would employe staff who knew so little about diabetesm heart disease, asthma, cancer, etc, but many employed know SFA about dementia it seems…

      • Yes I am really enjoying the MOOC, it (or similar) should be compulsory for anyone working with people with dementia! I’d like to develop some software tools to help people with dementia and their carers but at the moment it is looking like a daunting task!

      • Hi Kate, I recently joined your site and am enjoying reading all of the posts. I completed the MOOC last year and am now currently enjoying the Bachelor of Dementia Care. I am an enrolled nurse and have been caring for people living with Dementia for 10 years. I am team leader in our Special Care Unit and love caring for our residents. Luckily our facility is a restraint free facility and our doctors are very loath to prescribe antipsychotics unless absolutely necessary and only when needed with very strict parameters on their use. We use the Abbey pain scale regularly to ensure our residents are pain free. I regularly educate some of the staff when I see something that should not happen (mainly due to lack of education). For example, a staff member was saying “good girl” to one of the ladies. This lady became very angry, as I would. I explained to the staff member that this is an elderly lady who deserves respect and dignity, not to be spoken to as a child (pet hate of mine). This staff member had previously thought that people living with dementia did not understand what we were saying. The staff member is now more careful with her choice of words.

      • Thanks for joining the conversation here Cathie, and for continuing to study and update your wedge of dementia… we need more people like you in the health care sector for sure! huge hugs xx

  8. Oh Kate, how unbelievable in this day and age. This is something that is out of the dim dark and unenlightened era, and makes one despair. I cried reading this – what an undignified, sad and inhumane way to end a life! I do hope that by highlighting this, it will ensure it NEVER EVER happens again.

    • Yes, I saw very poor care three years ago many times, and am disgusted it is still happening… lots of anger and tears, but sadly, it will probably happen again tomorrow, and has probably happened today…

    • Yes, it was distressing to hear and I cannot imagine how tough it must have been… awful to watch someone you love (or anyone) have to starve themselves to death as the only way to take back control of their own life… 😦

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s