management – My Alzheimer's Story

Note: this post has been shared thousands of times since I first published it. Also, Dr. John Morley, director of the division of geriatric medicine at Saint Louis University, one of the United States foremost authorities on geriatrics, and former editor of the Journal of America Medical Directors Association called the piece a “wonderful insight, which should be required reading for all persons who have to work with persons with Alzheimer’s disease.”

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Imagine this:

It’s a bitterly cold winter night. You have recently been drafted into the role of caring for your father who has dementia. You are in his house in the country, miles from the nearest town. He is a BIG man. A strong man who has farmed the land he lives on for decades. He believes he’s somewhere else. In a strange hotel with strange people. And you are one of them.

Despite the fact that he thinks he doesn’t know you, he wants you to take him home. You argue for several hours. In the end, he begins to get physically aggressive. He tries to break a window when you block him from getting out the door. Years later you learn the situation could have been avoided. His aggression wasn’t his fault. It was yours.

I have learned through personal experience, reading and research that people living with dementia (PLWD) behave in logical, natural and understandable ways to stressful situations – just like most of the rest of us do. They react as any “normal” person would, but their behaviour is attributed to the disease rather than to whatever catalyst actually sparked it.

Many people with dementia are needlessly medicated for aggressive behaviour provoked by the environment and the people around them. Care partners need to find ways to hang up their boxing gloves instead of getting into the ring with people who live with dementia. Other dementia care pioneers share my belief that we can and should reduce, if not eliminate, the antipsychotic medication that is currently given to people with dementia to treat aggressive behaviour. It sedates PWD into compliance. I agree with dementia care experts such as Teepa Snow, Naomi Feil, Dr. Allen Power, Judy Berry, Eilon Caspi, and a growing wave of others who say that to provide compassionate care to PWD we need to see the world through their eyes.

20 questions

Here are 20 questions to ask yourself to help you understand why someone with dementia might get angry or aggressive:

What would you do if you had to walk a mile in their shoes?
How would you react if your children took your car keys away for no reason and told you couldn’t drive anymore?
How would you react if people told you it was daytime when you knew for a fact it was the middle of the night?
How would you respond if someone told you strangers would be coming to your house where you had lived alone for decades to take care of you because you couldn’t take care of yourself?
What would you say if someone came and took your dog or cat away?
How would you react if somebody kidnapped you from your home and took you to a prison full of sick and crazy people?
What would you do if the people in the prison ordered you to sit down when you wanted to stand up? Or made you stand up when you wanted to sit down?
How would you react if you wanted a drink and were told you couldn’t have one?
How would you respond if you loved peace and quiet and you were surrounded by loud noises, and strangers who shouted, groaned and talked nonsense all the time?
How would you react if people less than a quarter your age talked to you like you were a two-year old?
What would you do if you wanted to escape, but all the doors were locked and you didn’t have a key? What would you do if you weren’t allowed out – ever?
How would you react if somebody tried to force-feed you? What would you do if somebody made you swallow pills you knew would put you to sleep when you wanted to be awake?
What would you do if a stranger tried to take something that belonged to you? What if they managed to get it and they wouldn’t give it back?
How would you respond if someone told you weren’t allowed to go into your own room? Or open a door? Or close a drawer? Or pick something up? Or put something down? Or go outside? Or go inside? Or do whatever you wanted?
What would you do if you were trapped, and you cried for help, and someone put you in a chair you couldn’t get out of and said you had to stay there?
What if a stranger wanted to come to the bathroom with you? What if he tried to undress you? What if he put his hand between your legs and under your arms and under your breasts?
What if you said you didn’t want to have a bath but people took your clothes off anyway and then they forced you into the bath and told you to calm down and be quiet?
What if things like this happened every day? How would you feel?
How would you express your feelings if you couldn’t find the words? What if you did find the words and no one listened?
What would you do if you were alone and powerless? How would you react if you had no control over your own life? What if you felt incompetent, invisible and inconsequential?

What would you do?

Based on my own experience, research and training with Teepa Snow, I developed a process called “BANGS” to help myself and others avert “shoot outs” with people who live with dementia. It’s easy and it works. You can learn the steps and use it too.

Watch my free one-hour webinar on BANGS here, or see it in individual chunks at these links:

“B” is for breathe.

“A” is for assess, accept, and agree.

“N” is for never, never argue

“G” is for go with their flow, let go of your ego, get over it, get on with it, get down to it

“S” if for say you’re sorry

Download a PDF here: 20 Questions that Help Explain Dementia Aggression

https://myalzheimersstory.com/2016/12/08/5-surefire-ways-to-stop-anger-and-aggression-in-people-who-live-with-alzheimers-disease-in-the-mid-and-later-stages/

Take my short survey on behaviour here.

Care Partnering, Resources, Toward better care

20 questions to ask when someone living with dementia “resists” or “refuses” care

March 25, 2019January 23, 2024 amazingsusan

When you think about it, it’s not rocket science, or at least it’s not if you haven’t bought into the biomedical model that labels normal behaviour as aberrant because people have a diagnosis of Alzheimer or a related dementia.

I hope these questions will get you thinking about how “resisting” and “refusing” care might be understood and treated differently. I also hope it will prompt solutions other than a prescription pad and antipsychotic drugs.

20 questions to ask when someone living with dementia “resists” or “refuses” care

Is the person able to do this herself? Would she prefer to do it herself?
Is the care necessary? Could it be deferred or stopped altogether?
If a stranger were doing to me what I’m doing to her, how would I feel? What would I do? How would I react?
Have I asked his permission to do what I’m doing?
Is it the right time for this? Would another time be better?
Am I the right person to be providing this kind of care to her? Would someone else be better equipped?
Have I been properly trained in this kind of care?
How did I approach her? What was her initial reaction? Did I change my approach based on her reaction? Am I going with her flow?
Did I start with and continue to use Hand Under Hand?
What was going on with him in the previous hour or two? What was he doing? Could whatever it was have caused him to feel upset or uncomfortable?
Is this the right environment to be providing this kind of care? Is more privacy needed? Is it too noisy?
Do I normally have a good relationship with her? Does she like me? Do I like her?
Am I treating him with respect? Am I treating him like a child, or a patient rather than like a person?
Am I taking steps to preserve her dignity? Am I being compassionate and understanding? Have I put myself in her shoes?
If I were on the receiving this kind of care, how would I feel? What would I do? How would I react?
How do I feel about providing this kind of care to him? Am I comfortable? Embarrassed? Matter of fact? Clinical? Angry? Disgusted?
Might I have hurt him in any way? Physically or emotionally? Could he be in pain? Is the care process painful?
Is she hot, cold, hungry or physically uncomfortable in some way?
What tone of voice am I using? What kinds of words am I using? If someone were to speak to me like I’m speaking to him, how would I feel? How might I react? What would I do?
Do I have enough time to provide this care properly? Am I hurried and rushed? If I am hurried and rushed, might this be causing her to feel anxious or uncomfortable?

More posts in the “20 questions”series.

20 questions to ask yourself about “wandering”

20 questions that help explain why people with dementia get agitated and physically aggressive

20 questions to ask yourself about dementia-related incontinence

Take my short survey on behaviour here.

Care Partnering, Challenges & Solutions, Toward better care

10 reasons people living with dementia get up in the night, and what often happens when they do

November 13, 2018January 24, 2024 amazingsusan

Contrary to what many people believe, people who live with dementia behave, for the most part, in the same way the rest of us do. Their behaviour is – again, for the most part – NOT the result of their dementia or whatever disease (e.g. Alzheimer) caused it. Rather, like all behaviour, it is driven by human emotions, perceptions and physical conditions, which means that the reasons people living with dementia get up in the night are the same reasons the rest of us do.

For example, they may:

1) Feel afraid

I remember being terrified during thunderstorms when I was a kid. I would cross the hall to my parents bedroom and ask if I might crawl in with them. My mother never said no; she always lifted the covers to let me in, and then cuddled close to comfort me. When Mom felt afraid and wanted to crawl into bed with me, I also never said no.

2) Be lonely

Who among has not at some point in her or his life felt alone, lonely and disconnected – especially at night, and/or when experiencing loss. When we feel lonely, it’s natural to search out others…isn’t it?

3) Need to use to the toilet

For the last forty years or so, I’ve gotten up to have a pee on average once a night, sometimes more. Luckily, because I don’t yet have dementia, no one has drugged me for doing so. But, unless things change, if and when I get Alzheiemer disease and am locked up in a Dementia Jail, I’ll be sedated for the thing that I will have done for half a century by then because it’ll be labeled as “wandering.” How do I know? Because that’s what happened to my mom. She got up in the night to use the toilet, and as a result was drugged into a catatonic state for the next four years.

4) Feel restless / not be able to sleep

I’ve suffered from insomnia since I was a teen at which time I was prescribed Valium by my family doctor. Valium. At age 15. Drug culture then; drug culture now. The Valium didn’t stop my insomnia – I still endure it two or three times a week. When I do, I just get up. One day, if and when I have dementia of some kind, I may be labeled a “wanderer.” Maybe you will be too, unless we change the broken system.

5) Not know where they are / think they are in a strange place

Have you ever woken up while staying in a hotel or at a friend’s place, and been momentarily disoriented? You ask yourself where you are because the surroundings don’t look familiar. When this happens to me, I usually remember fairly quickly that I’m travelling and not in my own home. But during the time between waking up, and becoming re-oriented I feel confused and kind of scared. I imagine this is what it must be like for someone living with dementia, except the reorientation part may take much longer (i.e. minutes, or sometimes even hours, or days). Listen to what it might sound like when this happens, and what not to do when it does!

6) Be physically uncomfortable (i.e. hungry, thirsty, hot, cold)

Do you sometimes get up in the night for a snack? Or an extra blanket because you feel cold? Or to open the window because you’re too hot? Besides trudging to the WC at least once a night, I also get up almost every night and have a glass of soy milk and a piece of chocolate – sometimes in a sleep-walking-kind-of-slumber!

7) Have a bad dream

Ever wake up with a start in a cold or hot sweat because you’ve been dreaming something dreadful? And the dream is so vivid that you are unsure if it was dream or reality? I bet the same happens to people who live with dementia. Maybe even more often than it happens to the rest of us, particularly to those living with dementia with Lewy Bodies.

8) Have heard an unusual sound or noise

One night a few years ago shortly after I moved into a new house, I heard a big crash. I was scared to death. I didn’t get up to investigate. I hid under the covers instead. But that’s me. Some people would get up to check it out. When I got up in the morning, I found that a big mirror had fallen off the wall and onto the living room floor. Miraculously it hadn’t broken.

9) Be a “night owl” or have worked the night shift

Some people work at night all their lives. For others, being a night owl is their way of being in the world. Sleep all day, stay awake all night. And then oops! We want them to fit with our schedule. No wonder they get angry and upset.

10) Think it’s daytime, not night

So this is the one that’s out of the ordinary. It’s tough to imagine how someone might think it’s the middle of the day when in it’s the middle of the night and vice versa. Nevertheless, try to conjure up what that might be like, or read this real-life nighttime conversation between Mom and I.

Most of us respond in a normal way when we find ourselves in certain sets of circumstances. Most of us wake up in the night from time to time, or even frequently. When we do, we may get up – it’s normal to do so.

But what happens when people who live with dementia get up in the night for any of these reasons above? Their behaviour is labeled aberrant, partly because once they are up, they forget the reason why they are up, and they become lost and/or confused because of their dementia.

Is this stressful for family members who are care partners? Yes, of course. Do they get frustrated and exhausted as a result? Yes, they often do. I know, because I’ve travelled that road. Is it inconvenient and challenging for care workers in institutions when residents walk around at night? Yes, it is. But the onus is on us to find compassionate solutions to address these issues, and not to blame the behaviour we find challenging or inconvenient on those who are living with dementia, and who are behaving just as the rest of us would under similar circumstances.

And all of this is yet ANOTHER reason we need to #BanBPSD.

More posts and PDFs in the “20 questions”series.

https://myalzheimersstory.com/2018/02/02/20-questions-to-ask-when-a-care-partner-or-resident-walks-around-at-night/

https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/

Take my short survey on behaviour here.

Care Partnering, Resources, Toward better care

20 questions to ask when a care partner or resident walks around at night

February 2, 2018January 23, 2024 amazingsusan

My first few months as the full-time care partner to my mom while she was still living in her own home were difficult, mostly because I didn’t have a clue what I was doing. I learned as I went, but it was a slow process, and some knowledge came too late to be of much use to us. But it may be of use to you.

When I became tired because Mom was up and ”wandering” in the night, I turned to her family physician and then to her geriatrician for help. Both of them prescribed antipsychotics (Risperdal and Seroquel respectively), about which I knew little at the time. Neither doctor could offer any other suggestions or options, even though I specifically asked for non-drug alternatives as I knew Mom didn’t like taking medication.

I’m certain things would have gone differently if I’d had a better understanding of the reasons Mom got up in the night. When you think about it, it’s not rocket science, or at least it’s not if you haven’t bought into the biomedical model that labels normal behaviour as aberrant because people have a diagnosis of Alzheimer or a related dementia.

I hope these questions will get you and others thinking about how this particular “behaviour” might be understood and treated differently. I also hope it will prompt solutions other than a prescription pad.

20 questions to ask when people living with dementia walk around at night

What do you do when your bladder is full? Do you ever wake up in the night with a full bladder or with the feeling that you need to pee? Does it sometimes happen more than once in one night?
What would you do if you got up in the night because you had to pee and you couldn’t find the bathroom? Would you go back to bed? Would you keep looking for the bathroom until you found it?
What would you do if you woke up in the middle of the night with an overwhelming thirst and you had forgotten to put a glass of water on the bedside table like you normally did?
What would you do if you got up in the night because you were desperately thirsty and you couldn’t find the bathroom or the kitchen to get yourself a drink of water? What if you couldn’t find the light switches either?
When you were a child, did you ever crawl into your parents’ bed because you felt afraid in the night?
Do you, have you or did you ever let your children crawl into bed with you because they are or were afraid of the dark or of something else in the night?
Do you ever have nightmares or bad dreams? Have the nightmares or bad dreams ever shaken you so badly that you wanted to get up, even though it was nighttime?
How would you feel and what would you do if you woke up from a deep sleep and you were in a strange place you had never been before and nothing was recognizable and it seemed like you were alone?
How would you feel and what would you do if you woke up in the night and you weren’t in your own bed? What if there were a stranger lying asleep beside you?
Have you ever gotten up in the night to have something to eat because you felt hungry?
What if you got up in the night to have cookies and milk because you felt hungry and you couldn’t find the kitchen? What if the place you were in was like a maze?
What would you say to someone who told you it was the middle of the night when it was actually the middle of the day? What if they told you needed to go to bed in the middle of the day?
How would you feel and what would you do if you lived alone and you found strangers in your house at night when you got up out of bed to get a drink of water?
What would you do and how would you feel if you went to the bathroom in the night, and when you were finished you didn’t know how to get way back to your bedroom? Would you stay in the bathroom? Would you try to find your bedroom?
If you were in a strange place where you were being held prisoner, and a chance arose to escape, would you take it even if it were nighttime?
How would you feel if you lay down on the sofa for a nap on a sunny afternoon and the next thing you knew you woke up in someone else’s bed in the dark with pyjamas on?
Have you ever gone into a room to get or do something and then forgotten what you went to get or do? What if that happened to you in the night? What if it were in a hotel?
Have you or do you know anyone who has sleep walked? Do you ever get up in the night and have only a vague memory of having done so the next day? Do you sometimes feel groggy and disoriented when you wake up? Do you ever get out of bed and function like you’re on “autopilot?”
Is it harder or easier to navigate in the dark than in the light? Would it be harder or easier if you forgot to put your glasses on?
Is it normal for healthy adults to go to bed at 7 p.m and sleep straight through to 7 a.m the next morning? Do you sleep 12 hours a night without waking on a regular basis?

Download the PDF here.

More posts and PDFs in the “20 questions”series.

https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/

https://myalzheimersstory.com/2015/04/19/20-questions-that-help-explain-why-people-with-dementia-get-agitated-and-physically-aggressive/

Take my short survey on behaviour here.

Image copyright: vladi59 / 123RF Stock Photo

Care Partnering, Love, Toward better care

painful care partner choices: love or loss (or sometimes both)?

January 3, 2017November 14, 2018 amazingsusan

UK dementia care pioneer David Sheard talks about two stark choices that each of us who loves someone who lives with dementia must make at some point in the journey – maybe even multiple times every day. Both choices, both paths, are painful. But one of the two creates the possibility for love, compassion, joy, and growth, while the other inevitably leads to regret, sorrow, despair and loss.

In the video below, Sheard speaks in reference to family and friends visiting loved ones who live with dementia in long-term care. But I think his wisdom applies equally to those who are primary care partners and living with their loved ones on a full or part-time basis in their homes or in the community.

Of the dozens of videos I’ve watched on dementia care, this is the one that I think is perhaps the most important of all in fundamentally changing the way we approach co-creating and maintaining loving and productive relationships with those whom we love one who live with dementia. It underlies everything else. I invite you to watch and share. Thank you.

https://myalzheimersstory.com/2018/06/24/what-if-everything-weve-been-taught-about-dementia-care-is-a-lie/

https://myalzheimersstory.com/2018/05/24/5-ways-to-make-toast-in-long-term-dementia-care/

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Care Partnering, Resources, Tips, tools & skills

20 questions to change the direction of dementia anxiety and aggression

October 14, 2016January 23, 2024 amazingsusan

I discovered through personal experience, research and observation that people living with dementia (PLWD) behave in logical, natural and understandable ways to stressful situations, just like most of the rest of us do. Although they react as any “normal” person would, their behaviour is more often than not mistakenly attributed to the disease rather than to whatever catalyst actually sparked it.

People living with dementia are people; they respond normally when they are threatened, demeaned and made to feel powerless: they resist, lash out, become agitated or try to flee. Blaming the disease leads us in the wrong direction. What we should be doing is asking ourselves questions to reset the compass ; questions such as:

What might I and/or others have done to precipitate this situation, and how can I rectify it as quickly as possible with as little disruption as possible?
Would I behave the same way in similar circumstances? How would I feel? What would I want?
How can I defuse the situation? (Hint: do not tell people who are upset or agitated to “calm down!”)
What is threatening the person? How can I remove the threat?
How can I help this person feel more at ease?
What unmet need might this person be expressing? Is s/he in pain or experiencing some other kind of physical discomfort? Is s/he hot, cold, wet, thirsty, hungry, etc.?
What environmental factors might be contributing to his/her anxiety, and how can I neutralize them?
Is my tone of voice conciliatory and respectful?
Is my body language relaxed and open?
Can the person see and hear me properly?
Have I surprised him/her in some way?
What action can I take right now to restore calm?
How can I meet her/his immediate need?
How can I meet her/his deeper need?
Have I said I’m sorry?
What more can I do to empathize?
Could I ask for the support of someone else who might be more effective in dealing with this situation?
What could I do differently next time?
What can I learn from this?
How can I share that learning with others? How can apply my knowledge to engage more effectively with this person and others who live with dementia in the future?

Too many people with dementia end up needlessly medicated for behavioural expressions that are provoked by the environment and the people around them, including paid care workers and family members such as myself who are drafted into caregiving roles with little or no experience or training.

By questioning and reframing, I believe we can transform the way we see dementia and the people who live with it; we can also find ways to deliver better care. Specifically with respect to the issue of aggression, putting ourselves in the place of PLWD will help us discover what might underly behaviour we find challenging or problematic. We can then address the underlying causes instead of inappropriately prescribing antipsychotic medications.

Download the 20 questions pdf here.

Note: I developed a process called “BANGS” to help myself and others avert “shoot outs” with people who live with dementia. It’s easy and it works. You can learn the steps and use it too. The BANGS model is outlined at these links:

“B” is for breathe.

“A” is for assess, accept, and agree.

“N” is for never, never argue

“G” is for go with their flow, let go of your ego, get over it, get on with it, get down to it

“S” if for say you’re sorry