I have blogged about the use of restraints for people in aged care and/or with dementia, both physical and pharmacological, and how I think it is a crime against our human rights. There is another blog brewing on this, and I still think it is a disgrace but have no idea (yet) how we can change it. However a few days ago when we were walking around in Bath, I experienced personally why the use of physical restraints might be necessary. As a person with dementia, whilst everything looks ok on the surface, there is a lot happening below the surface. Being in crowds is not only difficult, but can be traumatic as the internal din inside our (my) head gets much louder, and our ability to focus on things such as safety are impaired. My ability to process information and things around me becomes more difficult, and the dyslexia even more so as, for example, I see signs back to front and upside down. My dear husband and I were wandering around Bath when this happened and I thought the one way road was going the opposite way to what the actual sign said. I looked one way, and thought it safe to cross the road, then suddenly with an air of intensity and fear, my husband yelled at me to cross the road quickly, before I was hit by a bus. He was in shock as the bus just missed me, whilst I was barely aware of its existence. I had not heard it, I had not even considered it would be coming from the direction is came from; thankfully my husband and guardian Angel Sophia were watching out for me as I arrived onto the other footpath just in time… dear husband even had considered for a split second if he should run across the road and push me out of the way of the bus, but realised he would have been hit with the full force of it instead, also not a desirable outcome! I was completely oblivious to the danger but felt his distress and relief when he got to me after the bus had gone by. So I wonder, do I now need to be restrained, like a two-year old on a lead from wrist back to my dear husband? I’m not sure about this any more, and although it would seem rather inhumane and radical, the alternative is not attractive either. How do we keep people with dementia safe, other than walk with us and hold our hand, when we get to where I now am now. I still don’t look, act or sound like I have dementia to most people, and most of the time, can hide the ever-changing symptoms, but they are there, and they are starting to scare my dear husband as he sees very clearly the changes and what might be ahead of us. Much more so than me.
The next part of this blog is some new thoughts I have had about the stigma sometimes experienced by people living with dementia, and about the labels which are used, which I felt needed further consideration. When I received the Safe Return bracelet from Alzheimer’s Australia, I initially wore it, but it does not use a symbol like a medic alert bracelet, and instead clearly says, Safe Return on the disc. We (my family) decided I should wear it because I regularly get lost. However, I soon stopped wearing it as felt embarrassed and humiliated by the label it gave me. Then at the recent ADI conference in London I got my knickers in a knot about being labeled a Person with Dementia rather than as a delegate on my conference lanyard, and stubbornly refused to wear it. However, the common voice of those of us with dementia at this conference spoke about wanting to be accepted without stigma or labels in our communities, but that we also want some sort of level playing ground, and like someone who is sight impaired or in a wheel chair, our disabilities are taken into account. But I wonder, if you can’t see them or we don’t make them clear to you, how can we reasonably expect you to make compensations for them. You cannot read our minds, and so if we don’t speak out, how will things ever change, but also, if we aren’t prepared to accept some sort of’label how can you possibly assist us more fully? It is a tough topic, but it does seem logical that for you to be able to make any allowances for us, you need some sort of visual cues… without the white cane, we may never know someone cannot see. My dear husband casually suggested people with dementia might need to wear a special coloured jacket or wristband, to which of course I said, you’ve got to be joking! But maybe he is right, and it is not as simple as us just saying treat me with respect; how will you know we might need more assistance than other people, who mostly look and act just like us, unless we tell you, unless of course you can read our minds. Well, that is, until we get to the secure lock down in the dementia unit, when we are being restrained, for our own safety?
Yes, it sure is very tough when you are in crowds with a large chunk of people around you-especially foreign people in a new enviroment who you don’t even know. When people with dementia are in crowds, they do get quite disorientated and accidents do happend like safety accidents. That event sounds scary and i do agree-there should be some physical restraints for people with dementia-particulary with road safety. My advice about restraint in a less harsh extent-maybe have a companion with you-perhaps your husband and children or friends in situations where there are a large chunk of people around you, so they can ensure you are safe and to help alleviate any dramatic and sudden events happening again. It sure is frightening when you don’t know what’s around the corner-i would find it frightening too if i was in the same scenario. I have a mixed view on medical barclets personally. Medical bracelets exist in New Zealand-no one in my family wears one. A little bit of analogy on medical bracelets in New Zealand, Kate and the requirements if the person or the person’s family wants them to wear one. People in New Zealand generally wear a medical bracelet if they have diabeties, epillepsy or an allergy, however, i am sure there are some people who have dementia or heart disease wear them though. Medical bracelets are very good for people with dementia, because if they get lost they will be found, and them having a medical bracelet will therefore help alleviate the number of missing people we read about in the newspaper etc. However, i can understand how you felt about wearing a medical bracelet, especially for someone with younger onset dementia, as medical bracelets make some people seem inferior. I think you made a good decision to remove the bracelet, due to how you were feeling. One thing i love about medical bracelets is that they help understand people’s conditions, which means there is generally more compassion, empathy, and tender for what they are going through. Medical bracelets do ‘label’ people though, which can be a downside. My Grandad doesn’t wear one, and before reading this blog, i actually never thought about him wearing a medical bracelet, although i personally think he doesn’t need one, as he doesn’t get lost and there street is all uphill which is an advantage(or disadvantage)as he can’t really get lost and there street is a culdesac too. He struggles walking uphill, so we are pretty sorted in that regard.
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I learnt today from a practicing registered nurse that it is no longer legal to restrain people in hospitals or aged care facilities in the UK, as it is now considered a breach of their human rights, regardless of their own, or others safety issues… a point of interest in our current discussions
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I so agree with everyone’s responses, such a difficult few issues. Safety for self or others vs personal rights… who knows when one starts and the other stops? I see a lot of abuse of pharmacological restraint which seems unnecessary, and sometimes seems to be the same as the use of TV to mind children used by many, saves to much time for the carers or parents. I don’t ever see laziness by the carer staff in residential settings, but there is acute understaffing, and the carer to resident ratio makes it impossible to offer better face to face care at many sites. I have however seen lack of interest in the people in an acute hospital setting, where the staff are more interested in sitting in the office looking at the computer, rather than giving personal care to their patients (my friend in hospital for 3 months late last year was exposed to what we all saw as negligent care). No answers, just a lot mnre questions.
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I often worked on medical or surgical wards where patients with acute or chronic brain syndrome (including some with dementia) might be admitted. We would avoid restraining any patient, either physically or chemically, like crazy. But if one of them tries to get out of bed in the middle of the night, falls and breaks their hip, then dies of the complications of a fractured hip, who is responsible?
My aunt hated being in the secure section of Kapara, but my uncle had finally had to place her there because he could no longer cope with having to find her when she had wandered off, often crossing busy roads, wandering in front of traffic, or taking a bus or train to some far-flung destination.
What of the aggressive confused one who is a danger to others in the residence? What do we tell the relatives of the co-resident who gets assaulted and damaged?
I argued very much for my dear neighbours staying in their own home – but to do that we and their relatives had to accept the risk that one day their behaviour, when left to their own devices, may result in their death or harm. They were happier that way, but at a cost.
A difficult one, but it is unfair to call the urge to protect an abuse of human rights – unless it is done unecessarily or through laziness.
And is chemical restraint (sedation) any better then physiclal restraint? It happens all the time!
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Trevor and I were only discussing labels last night. And we came to the same conclusion as you, commonsense prevailing they are necessary. At a conference last year Trevor said Toni was a special needs person and was howled down by one of the people there who had disabilities. We disagree, she does have special needs, it is a fact. Toni does need a wheelchair, Toni does need 24/7 assistance, and does need help with toileting and food preparation and dressing and bathing and all the things most folks take for granted. She does have special needs, that is a fact!
Although her speech is regressing we still understand her basic needs, most of the time anyhow. Too often carers/support workers/family assume because she does not ask for a drink she does not need one or does not ask for a cardy/jumper/blanket she is not cold. Perhaps everyone should have a Safe Return disc, when my mum got one for her sister with dementia she ordered one for herself as well. Everyone needs to feel safe.
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You bring up some great points. I think for those with dementia who are still in the “aware stage” like you and my husband, it would be more loving to just hold hands. It wouldn’t put a label on you. Have you thought of just getting a regular medical alert bracelet that on the inside lists your condition? Here in the States people with diabetes, seizures, medication allergies, ect can choose to wear them. On the front of the bracelet it states medical alert.
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