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

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20 questions aggression Boxing gloves

Note: I first published these “20 questions” in April 2015, since which the post has been shared thousands of times. Also, I’ve been asked by Dr. John Morley, director of the division of geriatric medicine at Saint Louis University, one of the United States foremost authorities on geriatrics, and editor of the Journal of America Medical Directors to reformat the piece and submit it as an editorial for JAMDA. This is a “wonderful insight, which should be required reading for all persons who have to work with persons with Alzheimer’s disease,” Dr. Morley wrote in the request to me. I’m reposting the piece now for the benefit of new MAS subscribers, and others who may not yet have seen it.

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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 with dementia (PWD) 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.

Teepa thin banner

20 questions

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

  1. What would you do if you had to walk a mile in their shoes?
  2. How would you react if your children took your car keys away and told you couldn’t drive anymore for no reason?
  3. How would you react if people told you it was daytime when you knew for a fact it was the middle of the night?
  4. 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?
  5. What would you say if someone came and took your dog or cat away?
  6. How would you react if somebody kidnapped you from your home and took you to a prison full of sick and crazy people?
  7. 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?
  8. How would you react if you wanted a drink and were told you couldn’t have one?
  9. How would you respond if you loved peace and quiet and you were now surrounded by loud noises, and strangers who shouted, groaned and talked nonsense all the time?
  10. How would you react if people less than a quarter your age talked to you like you were a two-year old?
  11. 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?
  12. 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?
  13. 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?
  14. 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?
  15. 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?
  16. 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?
  17. 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?
  18. What if things like this happened every day? How would you feel?
  19. How would you express your feelings if you couldn’t find the words? What if you did find the words and no one listened?
  20. 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

Subscribe here for my free updates.

31 Comments

  1. Pingback: 20 things & beings i love & am grateful for today

  2. Pingback: Understanding the Frustrations and Agitation of a Person Living with Dementia | HelloCare

  3. My father has dementia, had always been even tempered while my mom, now the caregiver. Was always given to angry outbursts growing up. So everything in this article makes sense, but it’s hard to communicate this to my mom who used to communicating by raising her voice and arguing. Yesterday my dad was in ER for not being able to urinate, was even tempered in hospital as it was explained to him he had to be catheterized for a week , but as soon as he got home he tried to rip it and and was in a yelling rage. There really was no way to change the subject, or go with what he saying. The only thing I could think of doing was for him to given medication, which calmed him and he went to sleep. Through all of this, the biggest issue is getting my mom to follow the simple rules when things get intense. I understand to some extent that caregivers are being told they need to make so many pains to accomodate, see things from the dementia patients perspective, while their own is negated, sometimes forgotten, devalued.

    • RE: “I understand to some extent that caregivers are being told they need to make so many pains to accommodate, see things from the dementia patients perspective, while their own is negated, sometimes forgotten, devalued.”

      Yes, it really sucks, and it’s incredibly hard to to do. However, in my experience those accommodations make it EASIER on the care partner in the long term, so it’s actually in their best interests.

      With respect to your dad, sometimes there truly are no other options, and if it works then all the better.

  4. RE: the loved one who is insistant on doing something they cannot do….and what I did more than once…. My Dad who was 90+ had times when he thought he was working in Maine…even though we lived in Arizona! One Christmas, at our home in the mountains, we were in the aftermath of a serious snow storm. My Dad got up one morning insisting that he had to go out and find out where he had parked the load of new cars on the semi, that he had to drive to Maine, RIGHT NOW! Now, obviously he didn’t have a semi and had arrived to our house in their Chrysler, with my Mom driving…but he was leaving, in the snow….he was putting on his shoes and going to walk and look for the semi etc etc. I ended up talking to him about the weather, and had him look out at all the snow….and said that it just didn’t seem ‘safe’ to be on the road in a semi this day. So I offered to ‘call’ his boss and explain the weather situation. I said to Dad….” You know your boss wouldn’t want you to be in an accident and would not want any damage to come to those cars, right?” I am sure he would understand. So my Dad gives me a phone number, and his boss’ name. Have no idea if it was a real person from his path, but for sure, not a real phone number…but I got on my cell phone and ‘made the call’. We had quite a “conversation”….and my Dad never even asked to talk to the ‘boss’ himself. He accepted that it was OK to wait til the weather cleared….and that his ‘boss’ wanted him to call back in a couple days. So all was well, and of course, by that afternoon, Dad had forgotten all about the semi and new cars on the load somewhere in never never land…that he had to deliver to Maine. It simply never came up again on that trip. BUT…when he was placed in Memory Care…it came up occasionally, as he thought he was living in a boarding house, and was leaving daily to drive to Maine to go to work! When we went to visit, and asked about his day, we would hear all about his day of being out working in the woods, and how he’d climbed a 60 foot tree to help cut it down and more!! This REALLY was one of the jobs he had back in Maine, when he was in his early 20s and he must have really enjoyed that time of his life!! It generally worked with him to agree with what he wanted, but perhaps we couldn’t do it right now….but lets go have some ice cream….or walk around and look at the flowers, etc….until we heard we could leave…..and it would all be forgotten by the distractions.

  5. I would have just put him in the car and driven him around for awhile. Maybe stopped and got an ice cream by that time he would have forgotten all about the strange hotel and be tired from the trip.

    • Yes, that would be fine on the condition that you put links back to the original blog post here and include the name MyAlzheimersStory.com. This is my original thought and intellectual property 🙂 Thanks for asking; many people just go ahead and copy and paste without attribution which is theft 🙁

  6. I am just now learning that the man I married 24 years ago had dementia. Up until 3 months ago I was overwhelmed with frustration of not knowing why he behaved, communicated, thought, reasoned the way he did. I yelled at him to the point of hating him. Someone finally told me what I have been dealing with. My life is totally different with this new understanding.

  7. How do you “go with their flow” when their flow is getting up and walking when you know they can’t walk and they are going to immediately fall down, but the PWD believes they can walk anywhere they want to and fight you when you attempt to keep them from hurting them self?

    • Anita, I know it’s very hard. Here is an example from my experience: the PWD keeps trying to stand up. I help him or her to stand up, and we just stand there, for 30 seconds or a minute or two or three or whatever. If she or he tries to take a step, I help her or him. My way is to stand in front of the person and hold his or her hands. I can feel from the feeling of his or her hands in mine how she is doing. We stand. After awhile it becomes apparent whether the person can take a few steps or not. If he can’t I say: “Would you like to sit down now?” And if she is unable to walk on her own, she will say “Yes, okay.” People with dementia don’t want to fall on their face any more than the rest of us do. In most cases, they know when they can or cannot walk.

      And yes, sometimes you have to repeat this many times. And it can be very tiresome.

      Try not fighting. Try assisting, affirming and supporting. See what happens.

      For the record, I believe it’s worse to hurt someone by physically or chemically restraining them than it is to hurt themselves by falling while they try to engage life in whatever way they can.

      • Tried that with my mom. She kept getting up and walking without her walker so I lightly took her elbow and was willing to walk with her anywhere she wanted to go. She jerked her arm away, cursed me to hell (“God damn you”) and said let go of me! She is in a facility. I could not manage her at home. I am broken.

        • Kathy, I’m sorry it didn’t work for you, and I’m sorry your mother was verbally abusive. I’m sorry for your pain and for the fact you feel broken. I hope you’re able to find healing one day. Standing with you in grief, Susan

      • I disagree…an unsteady confused person who is in danger of falling and breaking a hip…should not be allowed to try…this assumes that the caregiver has all of the time in the world to show a confused mind that they aren’t able while putting them at risk….

        • It’s your prerogative to disagree. But I wouldn’t want you “caring” for me.

          Life is inherently risky. Risk is something we all deal with every day. Sure, we should try to mitigate it, but we can never eliminate it. I would rather die trying, than die from giving up. But that’s me. I don’t think life is worth living if you can’t really live.

          More on the issue of remaining seated here: please remain seated for the rest of your life

  8. Hi Susan. I am one of your followers on AWR and have been for some time. I am particularly taken with your postings about your mom and your journey and experiences with her. You do so well keeping up to date with the postings as well as taking care of your mom every day.

    I am the CEO of the Alzheimer Society of Chatham-Kent in Ontario.

    Having worked with people with dementia for over 20 years, I have learned so much but also acknowledge that there is so much more to learn. Every day our clients and the staff from our Day Program, Respite Program or Counselling Program reveal something new that needs to be considered when giving care.

    We also lead the Behavioural Supports Ontario Initiative for the Erie St. Clair LHIN where our focus is supporting those with behaviours in Long Term Care and in the Community. I am proud of this program but admit we have a long way to go to change systems.

    If you would be so kind as to indulge me, I wanted to share with you the terminology we use for “aggression” and “violence”.

    Since those two words immediately bring images and thoughts which put those with dementia in a negative light, we have come up with a term: “Responsive Behaviours” which translated means “all behaviour has meaning.”

    This fits perfectly with the questions you recently posted on your website. So instead of using aggressive or violent, we say the person is exhibiting Responsive Behaviours which may be caused by environmental or medical needs.

    So many times I meet people for the first time and eventually end up telling them where I work. Often the response is “..oh…THOSE people are violent right?” And so starts my public education.

    Thank you Susan for letting me share. Please keep up the good work. I will continue to monitor your site and share your insights on AD and care giving with our audience.

    Stay strong,
    Mary Ellen

    • “Since those two words immediately bring images and thoughts which put those with dementia in a negative light, we have come up with a term: “Responsive Behaviours” which translated means “all behaviour has meaning.”

      Mary Ellen, TYSM for your comment and our conversation and yes, you are 1000% dead right we must do everything possible to eliminate language that paints people with dementia in a bad light.

      I couldn’t agree more with the fact that “all behaviour has meaning.”

      A resounding YES! to the person is “exhibiting Responsive Behaviours which may be caused by environmental or medical needs.” And when the needs are properly met, “problematic” responsive behaviours will hopefully be addressed and resolved.

      Thanks again for your input and I look forward to your wisdom and insight going forward.

      #fightthegoodfight

      Susan

    • Mary Ellen’s comments put “violence” and “aggression” by persons with dementia in a better light. I will be more careful myself in the future.

      I have referred to Gregory’s extreme, disruptive behaviors as “Resistive” because the “V” and the “A” words seem to imply that the person is acting with the intent of being hurtful.

      We continue to learn something new every day!

      • Why are we attempting to “whitewash” these kinds of behavior? People need to know the reality of what caregivers go through when someone they love with all their heart says “I hate you” or worse.

        • Dear anonymous, in no way is this an attempt to “whitewash” anything. Rather, it’s an attempt to help people to understand what might lead to the behaviour, and ultimately to let go of their own reactions.

          Like you, I have been on the receiving end of abuse. I’ve had insults hurled at me, and suffered as a result. However, I learned that when that happened it was the disease talking, not the person. Also, as the disease evolved over time over time my care partner stopped being verbally abusive.

          I’m thankful that, for the most part, I was able to see past hurtful words and behaviour. I invite you to write a post sharing your reality of “what caregivers go through when someone they love with all their heart says ‘ I hate you,’ or worse.” And/or to share your feelings here in the comments. doing so may help you to heal. I’m sorry for your pain 🙁

  9. These questions really make you think. Such a great way to get the proper perspective on what your loved one is actually experiencing. Thanks for making the PDF available.

  10. The answer to most of those questions, if it was me in mom’s shoes, would be to REVOLT, probably fight back, maybe become violent (if not sneaky!)

    My guess is that it was NOT your fault. You probably had no control over the situation and I am not sure what I would have done in your place. Discussion doesn’t always work. Rationalizing doesn’t always work. Lying doesn’t always work. Distraction doesn’t always work.

    What did you to to help her calm down?

    • EXACTLY! And my guess is that’s what most PWD do. It’s what I would do. It’s what I am doing LOL!

      And yes none of the things you mentioned always works. Nothing always works. But some things work way better than others….

      I’ve become a big, big fan of Teepa Snow and Naomi Feil who advocate different but I think complimentary approaches.

      As to what I did that night, I’ll tell you in the fullness of time… In the meantime, any guesses?

    • You are right it was not my fault in the sense that I was doing the best I could with the knowledge I had under extraordinarily difficult circumstances. But my behaviour added fuel to the fire. Not intentionally of course. So it is with many caregivers natural and professional who are not trained in skills, tools and techniques that help rather than hurt the situation. That’s what I mean by my fault. I mean it not to blame, but in the sense of one thing caused another… Thanks for helping me clarify 🙂

    • Yes it is. But worse is the way we try to “manage” it and the people who have it. We could do SO MUCH BETTER! I could have done SO MUCH BETTER.

      I hope I can use what I’ve learned to help others…fingers crossed.

      Thanks for following and commenting – lovely to have your support <3

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