We want people who live with dementia to be safe and secure. We worry about them leaving where they are and not being able to find their way back. They might fall and break bones. They might bump into things and get cuts and scrapes. They might get hit by a car or a bus. They might fall into a river and drown. Anything might happen.
The problem is, anything might happen to anyone at anytime, and, while we prefer autonomy for ourselves, we want safety for those we love. We want to protect the people we love who live with dementia from cuts and scrapes and suffering. So we constrain and restrain them, and we restrict them from doing things we think might cause them injury or harm. We lock them in places and we don’t let them out. When they respond as any “normal” person would, we pathologize their behaviour and sedate them with antipsychotic drugs.
Most human beings don’t like to be confined. We want to be able to move around. We are curious and adventuresome. We like to explore and investigate and discover. It’s in our genes. Why do people who live with dementia try to escape the chairs, rooms, houses, institutions and stigma we lock them into? Because it’s normal human behaviour.
People who live with dementia are just like people who don’t live with dementia: we want to go where we want, when we want. We want to do what we want, not what other people want us to do. If we are prevented from going where we want and doing what we want, we may get agitated, anxious or angry. It’s not rocket science. It’s more like child’s play. No one wants to live in a box, figuratively or literally. Painting a prison the colours of the rainbow doesn’t change the facts that it’s still a prison and that people don’t like to be locked in.
It’s normal human behaviour to try to open closed doors, leave confined spaces and explore our environment. It’s natural to want to be free. We need to find ways to help people with dementia do what we all do naturally, and to stop punishing them for being human. Sedation is another form of prison. The bars aren’t made of plastic, wood or metal, but they are just as real.
https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/
https://myalzheimersstory.com/2016/05/24/20-questions-to-ask-yourself-about-wandering/
Take my short survey on behaviour here.
Copyright: wernerimages / 123RF Stock Photo
My Alzheimer's Story 
Thank you for continuing to reframe how we see the disease, and helping us learn how these actions are quite normal and shouldn’t be labeled otherwise. 🙂
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Thanks Mike 🙂
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I think we need to find better ways to be able to track people who have dementia or cognitive issues; better ways to permanently identify them; better police, EMS and ER rooms education regarding locating and interacting with this population before deciding that a wandering/exploring behavior is “normal” and shouldn’t be cause for concern. Especially if a person is the legally responsible party, when someone with dementia wanders away, telling other family members that the missing relative was following a normal inclination that all human beings feel is natural isn’t going to cut it, especially if they are hurt or die as a result. I understand that confining the person isn’t want we want to do, but it’s going to take lots of changing of minds to convince the majority that having dad die outside on a cold day because he wanted to find his favorite old fishing hole was better than dying two years later inside a locked facility. And the legal ramifications in society today aren’t going to do much to back you up, nor will they back up a facility that allowed a resident to walk out behind someone else who was then hit by a car crossing the street because she was trying to “get home”.
This is a much more complicated issues than your article makes it appear to be, especially when there are multiple people involved in the caregiving. Maybe because we are talking about elderly people the discussion will allow them more freedom to do what they want, but I think it will be a long time before the consequences of what you propose can happen without regard to legal and moral issues which can be quite convoluted and complicated.
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Dear Zuzu,
Yes, I agree with you – it is much more complicated, and there are a multitude of issues to be addressed not the least of which are the legal implications. As with everything, there is no black-and-white, but rather a wide spectrum of greys.
However, my purpose with this post is really to help us to better understand the source of the behaviour and thus to more easily identify what causes it so that we can then find better ways to address it – ways that allow the person living with dementia, depending on what stage he or she is not, to freely engage with life, remain as independent as possible for as long as possible, and realize her or his full potential as a human being for as long as she or he is able to.
My purpose is also to provoke out-of-the-box thinking as well as solutions, not provide all the answers which would be an impossibility.
Thank you for your comment and insights, which broaden the discussion at hand.
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It is very scary when they do wander off. In the middle of the night recent my husband, John, decided to go out. He never usually want to go anywhere without me. He left without a walking aid and only his onesie on. I woke at 5 a.m.to find him gone. I searched all over our property but no sign of him. I did not believe he would lead the property but just in case walked to the next street both ways. No sign of John. He is now very frail and I could not conceive that he could have gone far. Everyone was still asleep. I then rang the police. They then searched the property but couldn’t find him. He was eventually found over a kilometre away clinging on to a letterbox. In one hand he had several pages he had taken from a photo album.
He was cold….
The police were so good.
I got him inside, got him warm and some breakfast. I then asked where he was going. He w
Had to go to see the editor of our local newspaper. He didn’t know why. He was quite happy and not at all traumentized by the experience.
My mother followed someone out of the Home where she was. She was found at the door trying to get back in. She got out but immediately wanted to go back as it was unfamiliar.
Nobody suggested medication in either case. In both cases everyone carried on with normal routines to make them feel safe and secure.
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I agree Diane, it IS frightening when people leave somewhere and become lost. However, I also feel we need to find better ways of dealing with people become lost than drugging them. I’m glad “Nobody suggested medication in either case. In both cases everyone carried on with normal routines to make them feel safe and secure.” That’s the way it should be.
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Aggression, physical and verbal abuse, flinging their own poop… hmmm…. so glad that there are places to help handle these aspects of dementia. You can call it prison all you want, it doesn’t change the fact that they are not ‘normal’ anymore.
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Thanks for your comment Beth. I guess I would first ask myself what causes the aggression, physical and verbal abuse and poop flinging, which is part of what I have explored in these posts:
20 questions that help explain why people with dementia get agitated and physically aggressive
29 behaviours you could be sedated for
Lots of research shows this kind of behaviour can often be addressed as demonstrated by Leah Bisiani’s comment above. The way such behaviour is handled in many, if not most, institutions is to medicate the person who lives with dementia rather than by addressing the underlying cause of the behaviour.
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Thanks Susan – it is always so refreshing to have someone like you supporting my models of care, my passion, my crusade so to speak, in changing the old archaic cultures and philosophies of care.
I feel very privileged to be able to express myself on your site as I do in my consultancy workplace, and very much appreciate you.
Beth, and any person who would like more insight into behavioral expression and why/how they occur, please, feel free to contact me through Susan or through my website.
I think many of us are so unaware that often WE are the triggers to behavioral expression.
We also always need to understand the progression of dementia – what type it is, and where that person is situated moment by moment – unless we enter their reality we truly cannot sit in judgement on any behavioral expression
Especially, when we look at ourselves, our anxiety related or stress related responses our annoyance, impatience, and intolerance to the behavior of a person with a cognitive deficit. Why is it WE are NOT then labelled so negatively and disciplined for OUR unacceptable behavior??????.
L.x
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“I think many of us are so unaware that often WE are the triggers to behavioral expression.”
What you say is so true Leah, and sadly, I didn’t realize it until very late in the day. I could have save myself and my care partner so much anxiety and needless suffering by being a detective and getting to the root cause of behaviour instead of attributing it to the disease.
I hope by working together we and others can make positive change. Thanks for all you do.
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The pleasure is all mine.
Together we can always make a difference on a much larger scale.
With love.
L.x
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Indeed we can. We can indeed. X
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I am quite saddened to hear you feel that way Beth, and really do hope that none of your loved ones need your help at any stage of their life. Dementia is the worst disease that you could ever endure. It takes compassionate people to understand, and to go through it.
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@Anonymous: I was sad too. But it sounds to me as if Beth already has people in her life you need help and that her experience is the basis of her comment. I may be wrong, but that’s what I inferred from her comment.
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You are so right my friend.
The comment about ‘normal’ I find quite offensive.
What is normal? Normal to whom? I bet these so called judgmental ‘normal” people pick their nose in private, or drink out of the milk container or eat with their fingers when they shouldn’t, or do things noone else considers normal.
Normal is but a social perspective based on nothing, because we are all so different from one another that there s no basis for normal.
Having dementia does not remove humanity or who a person is. Normal is not part of the equation here. This attitude is where all the negative stereotypical and ageist views on dementia come from. Such a lack of understanding.
Even when I ran facilities I ensured all the people who lived there had free reign to wander happily wherever they chose – we created an environment so stimulating, warm, homelike, that they wandered ‘happily’ touching the fluffy walls, the tactile wall hangings, the memory boxes, moving to the music in the background, responding to the colour, the plants, the gardening. Sitting outside with friends and family having a cuppa. Entertaining. Laughing. Communicating.
The key was to continue life as they knew it, so we brought in everything we needed to to establish life as similar as possible to what they have lived.
Thus they weren’t depressed, they didn’t withdraw, they weren’t bored out of their brains and they were not restricted by our task orientated little lives as caregivers.
This is what person centered care is about.
The person!!!! And maintaining who they are and the choices, references, activities and hobbies they have chosen throughout their lifetime.
We also knew those who liked to go walking at certain times of the day, or go for a wander down the shops, or walk the dog. I would ensure staff maintained these routines thus the need to ‘escape’ never or rarely ever occurred. The person was supervised, and did not have the need to try and escape as we would pre empt their routine and go with them. Give them company.
There are always a myriad of procedures in place re risk of absconding and all persons who understand dementia should already have these in place. These are the safe guards but rarely needed if you understand the individual you care for.
They include:
Wandering checklists – check for that person at specific intervals
Wandering identification assessment – copies in files,and given to local police and favored places of that person
Risk assessments
Place a card of ID in the wallet of the person saying basically where they live, that they live with dementia and please call these numbers
Have key padded doors at the front and signs for visitors and tradespeople not to let people out before speaking to staff
Staff awareness
Etc etc etc
This is not rocket science.
It is about compassion, imagination, creativity, and understanding the person.
If dad wants to smoke all day in the garden and its freezing – let him. So its cold??? Put a coat and hat and scarf on him, a hot cup of tea in his hand, and let him do the only thing that probably gives him joy at this stage of his life. Its not what will kill him now.
Trying to climb an 8 foot fence because his rights are disrespected may however be what does kill him!
These people are human beings – just like with our children we cannot wrap them up in cotton wool and throw away the key forever.
That’s not living life.
There is always an element of risk but there are risks that are preventable, and then there is without doubt, and will always be accidents. We just need to be as aware as we can be of the preventable ones.
We do not have the right to remove all the value from a persons life just because we are so caught up with bureaucratic and ridiculous rules that we can be more flexible with.
I used the above processes for years, and my research supports that what it does do, is allow people to live their life which is what they deserve,
It also reduces behavioral expression to such an extent that risk is reduced so significantly (especially falls and serious fall related injury), that all the issues people whinge about, are basically eradicated because the people being cared for are not exhibiting behavior that is MORE risky to themselves and others.
We place people at much higher and severe risk by restraining and drugging and restricting and disrespecting these human beings who deserve the golden years and nothing less.
Something to think about is it not????
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I totally agree with you at Leah, and furthermore I would delete the word “wandering” from our vocabulary in reference to people who live with dementia until it’s no longer used to label normal behaviour.
More on that here: 20 questions to ask yourself about “wandering”
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AMAZINGSUSAN I agree, but I’m just curious what word you would substitute for “wandering” as that’s what I’ve been using for my mom. She has Dementia but she is the loving, caring person she always has been.
With her being an educator for over 30+ years, Dementia is the only thing that took this passion from her or she would still be teaching.
She now has 24×7 caregivers at her home. One day she “wandered” out of her house and down the street while her caregivers were taking care of my father in the back room. They went to find her and she was gone! All within 5-10 minutes.
Luckily a neighbor was coming home from the grocery store and found her at the end of her street. The neighbor knew about her condition and brought her back home.
She has done this several times and has also been found hiding in a closet.
So, I just refer to this as “wandering” around, losing focus, confusion, bewildered, and disoriented.
Any suggestions would be greatly appreciated.
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Mini, I’m creating a blog post to answer your question; thanks for your patience 🙂
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Amazing Susan…Do you mind if I share some of your links on my caregiving page…and yes I was a caregiver for 15 years in our home. My husband had FTD and passed in our home December 2006. I never want any caregivers to go through what we went through therefore our page and a book. Just eliminating their alienation has been a huge help to so many.
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I would love it if you shared some of my links on your caregiving page Susan Scarff. the only thing I ask is that you not copy and paste my posts in their entirety, but rather provide links to my pages, which would be great.
I share your mission and purpose. I too want to help as many people as possible to have an easier and more meaningful time during their caregiving experience. We’ve come a long way since 2006, and there is still a long way to go. Thanks so much for connecting. I have liked your FB page.
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“We need to find ways to help people with dementia do what we all do naturally, and to stop punishing them for being human. Sedation is another form of prison. The bars aren’t made of plastic, wood or metal, but they are just as real.”
I really support this fragment of your post!
This is exactly the reason why I’m going to realise a warm, caring home for people who suffer from dementia. The keywords are autonomy, freedom, love and respect! Our mission is to provide this home based on complementary nursing.
(Located in the Netherlands)
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I am interested in your reply. Here, in New Zealand, we have been looking at the dementia villages in the Netherlands. Our first one is being built at present. I love the idea where there is a secure village with houses, shops etc in a secure environment. The people in this environment can then continue to lead their lives in a way which is familiar to them. It sounds amazing and I will be following our one with great interest. What a wonderful (and enlightened) idea. I suspect that in this environment they could wander around to their hearts content but never be lost. Medication would be a thing of the past.
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Fingers crossed Diane.
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anonymous: keep us posted and send us some links please.
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Yes I agree this is a well written article, and I agree I would feel confined.
I am interested in how you think a care home should manage a situation where someone living there is always trying to leave? This person is not safe to be wandering the streets looking for home.
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Dear anonymous, this is the question that so many long-term care facilities struggle with. I think the answer lies in completely rethinking the way that institutional “care” is provided. It means designing and building facilities in new ways, and using a completely different approach – one that involves appropriate levels of activity, engagement, respect, understanding, and which creates an environment that people can explore without wanting to flee. One approach is the dementia care village like this one: http://hogeweyk.dementiavillage.com/en/
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